Updates, News and Other Thrills in the Life Of Susan C

Had a great day!

2012-01-10T09:00:00.000-08:00

My nanny was sick the second half the day but I made dinner for us and a friend going through chemo, fed the kids and cleaned up and had to make myself go to bed I still had energy. It was like the good old days with just me and the kids hanging out and talking in the kitchen. I know the Myer's cocktail I did in the morning had a ton to do with it but I was still proud of myself. My appetite is actually normal now- I think the T3 the doctor in LA I finally went to for my thyroid (after 2 years of gaining weight) is really helping.
I'm not losing weight (still in XL when I was in a small and XS two years ago) but now I have a fighting chance. (4 diets since last spring- none worked)

So tired...my sons have to fend for themselves

2012-01-07T09:39:00.000-08:00

Haven't been able to start new treatment yet. Not up to it.
I don't know if Chronic Fatigue Syndrome is kicking up, has already been "up", or what. But I am exhausted. It happened right after I started working out. I've worked out three times now in the last week.

My "workout" routine consists of doing the arm machines- like FIVE reps for each of the 4 machines. Then a very slow bike ride- so slow the automatic computer often shuts off. I make sure not to get winded at all and only allow my breathing to increase very slightly.

After the first time, I came home and tried to have "special time" with my 6 yr old. That's when just he and I hang out together. I do it with both kids. I have toys only used for that. I got the idea from the Wonders and Worries parenting class I took 2 yrs ago. Its an agency that counsels children with a terminal or chronic illness in the family. After the first time I worked out I could NOT even keep my eyes open when my 6 yr old and I were spending time together. He was drawing things for me and I fell asleep. He kept asking me to look at the drawings. I would say a compliment then fall right back to sleep. I slept for about 4 hrs and could not get up the next day til 11am. When I got up I drove to my other son's school to take him to a doctor's appt. I was so exhausted I told my son I couldn't come into the doctor's office from the waiting room with him and he would have to go and talk to her by himself. He's 10.

Starting another kind of treatment for the first time

2011-12-28T09:00:00.000-08:00

I am not on treatment. I just couldn't make myself go back on the antibiotics. So I am looking at other holistic treatments.I think I have a good one for now. Lauricidin, IP-6 and Ribomax are just a few. I still feel like hell on it- which is good- shows it's working. (I tried just those three for one day to see before the holidays.) I'll start when the kids go back to school after the holidays. 1-3-2012. It could be just as bad but not as damaging to the body. This will most likely be at least a decade long thing at least til I get well. Most people I know that are "over" it took that long. I am just hoping it won't be as hard the whole time like the hell It's been the past three years.

Another issue is they still can't balance my thyroid and I am up to 60 lbs overweight now. I have tried 4 diets since last spring. In the new year I'm just going to try again with a different one this time and this time try to excersise aerobically every day. Not going to be easy on treatment but I am bigger than an XXL now and on my way to diabetes. (I was a size 6 for the past 25 years before my thyroid became an issue.)

Started another round today

2011-09-06T11:38:00.000-07:00

Last round they finally determined I was allergic to Septra and stopped it thank God. I didn't write about it here.
It gave me ulcers and candida all over my tongue and under it. I couldn't eat for four days straight the first time. The second time I refused to do it after the first dose. Finally my nurse went to Dr J and he said to stop it. So that was last round. One week of that and two weeks off of that. But the two weeks off I didn't get a rest from the symptoms. Weird symptoms keep coming up. Mostly fatigue. One day I woke up at 10 up for about 2 hrs back to sleep til 8pm and back to sleep at a normal time. My kids are so clingy and desperate for time with me. I don't have it or the energy to give it to them but I make it.

Today I started another round and within a few hrs I feel pretty bad. Dry heaves, hands shake, breathlessness, Dull headache, weakness, intolerant of any kind of smells. Did a detox method I frequently do but made it worse. I am breathing short breaths through my mouth. Can't go anywhere and definitely could't drive.
My housekeeper doesn't believe me anymore. She asks how I am doing but doesn't say anything after I say I feel awful. Feet and legs hurt so bad I am in the wheelchair.

Nanny has to take other child to an appt. I have to meet my 6 yr old at the bus stop today and I don't know how I am going to drive the two houses to do it and return the enthusiastic smile and wave he will give me when he sees it is me and not the nanny. Won't be able to turn my head in the car to see the picture he drew today.
After that will let him get his own snack and go back to bed.

Happy 4th!

2011-07-04T10:46:00.000-07:00

Going back on antibiotics

2011-06-22T09:21:00.000-07:00

Everything the doctor said made a lot of sense. I've had 6 mos break so that's good I think. 2 more yrs now of orals he says. I keep the PICC line for supportive therapy- 75 grams vit C and the Myer's cocktails.

Slight Relapse?

2011-06-19T19:42:00.000-07:00

I had been doing great the last month or so- going to the gym, gardening, cooking, no naps...
But then despite all my efforts to avoid it, my son got the flu from his friend. Then my other son got it and then I got it. But it wasn't like any "flu" I had ever experienced. This went on and on. After about 4 days I could get out of bed but was exhausted immediately. It hasn't stopped. It is getting better but is so slow. I have some of the Lyme symptoms back- sensitivity to light and sound, headaches, nausea in addition to the Lyme. I am trying not to get depressed about it but plain and simple I just was. Depression is a symptom of Lyme also though. So that's where I am. I don't know when I will be able to get back to where I was.
One of my (holistic) doctors told me I wasn't relapsing, I was just getting over the flu really slowly. But I don't think that's right. On Tues we have a phone consultation with my Lyme specialist in DC. I know he will want me back on oral antibiotics. UGG! That means for me at least in the beginning to clear the calendar and live in bed. I hate that. We will see.

Ben Stiller Reveals he may have Lyme Disease

2011-05-15T07:54:00.000-07:00

Ben Stiller Reveals he may have Lyme Disease

POSTED BY HANNAH ON MARCH - 26 - 2010

Actor, Ben Stiller

Hollywood funnyman Ben Stiller may be among one of the thousands of people around the world who have contracted the chronic condition Lyme disease. Like many other sufferers Stiller, 44, discovered he may have this potentially harmful disease after seeking treatment for another ailment, in this case an inflamed knee which never healed after he injured it whilst on a charity related trip to Mozambique. Stiller explained that "I was in Africa about three and half weeks ago and I stepped in a ditch in Mozambique", but after a few weeks his knee was still very painful and inflamed, causing Stiller to walk with a limp at times and so he sought further medical assistance. Despite numerous tests doctors could not identify the cause of the inflammation and infection and this painful condition was exacerbated by some arthritic elements that were revealed on MRI scans.

Lyme Disease Suspected

Stiller’s knee injury grew steadily worse over the following weeks and was so painful at one point he almost had to pull out of a high profile interview with one of America’s premier TV talk show hosts David Letterman, which had been scheduled for March 23. However recently a breakthrough in Stiller’s mystery knee complaint came through when one of his doctors queried whether or not he had ever had Lyme disease. Stiller had been on the East Coast during the height of the tick season the previous year (ticks are prime carriers of Lyme disease) and that at this time his son had actually contracted the disease. Lyme disease is well known for causing severe joint pain and arthritic conditions, and Stiller’s doctors finally diagnosed Lyme disease as the most likely cause of his painful knee condition. As Stiller explained to Letterman in his interview this breakthrough came just at the right time, as the next stage of his treatment would have been orthoscopic procedures followed by possible invasive surgery, and as he said “…if it is Lyme disease, I won’t have to have the procedure done, which is great", as this treatment could have seriously restricted his mobility for months and prevented him from working on any new movies or other projects.

Confirming Lyme Disease

Lyme disease is a difficult condition to properly diagnose, as it can in some cases take months or even years for the symptoms to appear, and standard testing can not always identify positively whether or not the bacteria that causes Lyme disease, Borrelia burgdorferi, is actually present in the system. Although there are still more tests to go ahead before Stiller can be confirmed with Lyme disease, he could be among thousands of patients around the world suffering from this potentially debilitating condition who are initially misdiagnosed, and undergo months of futile tests. Lyme disease is easy to treat in the early stages with antibiotics, but if left to develop it can cause a number of painful symptoms such as inflammation and swelling of the joints, and it can also be much more difficult to treat once the bacteria has spread throughout the body’s system.

News

Obit and update

2011-05-14T10:37:00.000-07:00

Ive been feeling GREAT!

I really need a break from antibiotics. Doing Myers and a therapeutic dose of vit c for Lyme 75 grams- it's high enough for cancer patients as an alternative to chemo. IN the nick of time as had to fire household mgr/nanny.

Say prayers I dont get sick again. Thanks for hanging in there with me- lets hope it sticks!!

Thanks, Susan

___

Sterling Edgar Walton: Old-fashioned doctor who spent time with
patients

02:42 PM CDT on Tuesday, April 12, 2005

By JOE SIMNACHER / The Dallas Morning News

Dr. Sterling Edgar Walton was known for the time he spent with his
patients. After he took a leave of absence from his North Dallas
general practice in December to battle Lyme disease, many of them wrote
wanting to know when he would return.

Dr. Walton, 57, died Friday of complications of Lyme disease at his
Dallas home.

A memorial will be at 1 p.m. today at Park Cities Presbyterian Church,
4124 Oak Lawn Ave. He was buried in Capital Memorial Gardens in Austin.

"He was your old-fashioned doctor who spent time with patients," said
his wife, Becky Walton of Dallas. "He was your family doctor."

Dr. Walton had a passion for medicine and never intended to retire, his
wife said.

"People view him as a very humble, understated person, but he was a
perfectionist," Mrs. Walton said.

Born in San Antonio, Dr. Walton was named for his uncle, Dr. Edgar
Dunstan, an internist who was named superintendent of Parkland Hospital
in 1937. Dr. Dunstan was a mentor and role model for his nephew.

Dr. Walton grew up in an Army family, traveling the globe when his
father was transferred. He graduated from Radford High School in
Honolulu, where he was valedictorian.

He received his bachelor's degree from Rice University, where he was in
the marching band. He received his medical degree from what is now the
University of Texas Southwestern Medical Center at Dallas in May 1973.
He was an intern at Baylor College of Medicine in Houston.

Dr. Walton's career included all aspects of family practice. He even
delivered babies early in his career, his wife said.

He began his professional career practicing at Baylor University
Medical Center before moving to Medical City Dallas about 15 years ago,
his wife said.

Dr. Walton was past president of the Dallas Academy of Family Practice.

"He also had a lifelong love of music," his wife said. "He was an
accomplished pianist and had sung with choirs all over Dallas."

Dr. Walton was an active member of Park Cities Presbyterian Church,
where he sang in the choir. He was devoted to his church, gave
generously and welcomed missionaries into his home, his wife said.

In addition to his wife, Dr. Walton is survived by a daughter,
Elizabeth Campbell of Nashville, Tenn.; a sister, Linda Walton of
Dallas; a brother, Norman Walton of Dallas; and two grandchildren.

Memorials may be made to the Park Cities Presbyterian Church Choir.

Haven't posted in a long time

2011-05-01T10:01:00.000-07:00

Ok, so this will be a rambling post because I haven't wanted to post because I don't want to be a sick person anymore with a blog. Instead I would like to be a mom. Please God, let me leave the former identity behind!

Since the beginning of the year I have been trying to treat holistically. Using high doses of Vit C. I have hit a plateau and might have slid back a little bit. I am trying to support my body now and even treat in a way that supports my body (high doses vit c, ozone) but I can't get to all the places I have to get to in a week in the number of visits I should probably get to in order to do this. So I don't know where I am in treatment. Another unhappy fact is that my thyroid started getting off track in Aug 09 and is still not balanced. The only thing I do have control over is now I can excersise since I am off IV meds.
I really need to get on a schedule of fat burning excersise but that involves the legs and feet which aggravates my pain. (still have the picc so cant swim)
So now I am up almost 50 extra pounds on my 5' 4" frame. I am frankly miserable physically. I have been really thin and often athletic the last 25 yrs and now I am plainly FAT. I used to wear Smalls now I wear Extra and XXLarges.
I was running twice a day up til the day I was in the wheelchair with the bad pain May of 08 before we knew what was wrong.
So now I am finding myself choosing between avoiding pain and benefits of aerobic exercise. (Avoiding pain wins every day) However, even when I don't have anyone to push me in the wheelchair and I have to do a lot of walking with the walker and I hurt but get the benefit of aerobic excersise, my weight still stays the same.
I started a diet last Wed and am not losing. I will have yet another physician (3 in the last 2 months) check my thyroid numbers and see what different thing they would do and try that and maybe it will be the magic thing that gets numbers going down. Other than that, I don't know yet what else I will do.

Update from Lyme Patient Donna

2011-03-29T17:53:00.000-07:00

Hey... You won't believe this... M. has Lyme and Bartonella!!!!!! Aughhhh!!! My dr is sure... Igenex tests went out today... :( explains a lot tho

Found out today Vit D is only 16, and his sugar was also low... 50. He is on supplements now but no abx yet. Waiting for Igenex I guess. IDK. He has a bartonella scar on his back that our doctor last year told us were stretch marks... but I really thought in my gut he was wrong but ... well... I wish I had done something sooner but I didn't. THe tests last year were the sucky ones... all negative of course. now he has been on minocycline for 2.5 m recently for his acne... so even the igenex tests could be screwed up. Great.

Trying now to balance everything and just get him out of High school w/a diploma. The school is being really supportive so that's a relief. I think I may just pull him, do home bound, and let him take it easy for the next few months. When he starts tx this could get really hard for hiim, so if all he needs to do is pass English and fill out some packet for gym credit, well, that would be a gift for him.

Even if the igenex are negative the dr is convinced.... he has so many symptoms. I hope that he gets at least some positive bands on the blot though as it would be an easier sell on tx. Ugh. Thanks for your prayers. I feel exhausted on the heels of Joe being pretty sick with an upper respiratory thing, Nathaniel sprained his ankle and that took a lot of running around, and now this. I'm feeling pretty symptomatic.... so will lay low for a few days and just rest. I was feeling SO much better.

2011-02-20T15:29:00.000-08:00

Wow. This person, Heather was committed to an insane asylum because no one believed she had Lyme. Incredible story.

After all I did choose the "aggressive" protocol...

2011-02-18T08:25:00.000-08:00

I've been doing very well lately. But there's a high chance of probability I have this.

"The antibiotic-induced increase in gram-negative organisms usually does not result in adverse effects, and once antibiotic treatment is discontinued, the nasal flora reverts to its previous state. However, in a small number of patients, the increased number of gram-negative organisms results in a transfer of organisms to neighboring areas of the face. The bacteria populate existing acne lesions and can also cause pustules to arise de novo." Love it.

2011-01-27T06:11:00.000-08:00

Today I WALKED to the bus stop with the kids with NO PAIN (partly because it was early in the am). I was in a wheelchair and could not walk or stand at all without HORRIBLE pain 2 years ago. I am off treatment these past 2 weeks so all these awesome things happen BUT I have to start treatment again next week.
I ended IV therapy 2 weeks ago (will keep picc line for supportive iv therapies) but I have to continue for 2 more yrs on orals til Jan 2013.

I feel so good I don't want to start treatment again.

I am 30 LBS overweight and have to figure out some way to get that off. I have to be careful overdoing it with excersise or my body won't be able to handle killing the bacteria, getting rid of their die-off toxic effects, and taking the stress of the excersise. Plus I really can't do much with the potential for severe pain in my feet with this peripheral neuropathy. My metabolism is now set pretty low so dieting alone doesn't seem to do one thing although I am constantly doing it anyway.

2011-01-24T11:37:00.000-08:00

Quick update:
I had been doing really well on an off-treatment week due to Myer's Cocktails IVs.
I went on my last IV Levaquin and Merrem exactly two weeks ago. It did it's job too well and I got such a toxic reaction at the end of my week that I am still recovering from it. Horrible rash that lasted over a week. Feeling awful. Sleeping 14 hrs a day. Its finally starting to lift now.

"My Lyme disease is not the IDSA Lyme disease "

2010-12-30T23:28:00.000-08:00

"Chronic lyme sufferers around the country are fighting back against damaging public and mainstream medical opinion that chronic lyme disease does not exist, as reported recently in the Chicago Tribune’s article “Chronic Lyme disease: A dubious diagnosis.” These long-term Lyme patients are using the two things they still have – their voices and their stories – in solidarity, publishing essays entitled “My Lyme disease is not the IDSA Lyme disease” as a rebuttal to this article, in blogs all over the Internet. Below you’ll find H’s story. She wishes to remain anonymous to protect her family, who have since come a long way in supporting her in her Lyme journey."

today

2010-12-21T11:12:00.001-08:00

Wow. Huge herx last night. Big sweats, light sleep all night. Body hurts all over Glad it's working.

Tonight

2010-12-20T19:22:00.000-08:00

So tired since I didn't get to sleep last night til 4:30am (that's with insomnia meds). And since I have a super packed day tomorrow and have to get up so early to fast and do bloodwork before Dr visits before Christmas holiday, I was going to treat myself to an early bedtime. Tomorrow- thyroid doc, an IV infusion, psychiatrist appt (have to get those insomnia, and occasional anxiety and depression meds thank you Lyme), detox holistic doc., and first trip to orthodontist, ( grind teeth so much -side effect of Lyrica- that I need jaw assistance. ).

Swear to God the labwork (everybody wants blood!), doctor visits and trips to the pharmacy for the huge amount of pills I take take more energy from me than the actual disease does. No wonder one of my symptoms is "fatigue":

So I tried to go to bed at 7:30. Thought I could made it but 9 yr old's hamster got lost- lots of searching, crying, and feeling guilty by "people".
Then 5 yr old wanted to read me a book. Was happy to stay up for that since it was the first time he has read a book! It was painfully slow, not many words learned by sight yet but I got excited for him and couldn't get the smile off my face. He was so proud. I love that look. Now I am awake. Bedtime will wait.

Insurance

2010-12-20T18:59:00.000-08:00

Principal insurance sent a letter that they won't pay because I don't have Lyme Disease. YAY!
I guess I'll be getting better now anyday! (haha)

We have Aetna now and we're anticipating the same letter. (switched cos last april)
My IV cost is $5,000 a month.
I wish there was a way we could half-way boycott insurance and just have catastrophe insurance. But what has this condition I'm been?
And Lyme does kill you btw. It's just a long slow death - (not trying to be dramatic, honest I'm not). It usually does it via cardiac arrest.
Another cause of death is explained here by an anonymous mother:
"Suicide is actually the leading cause of death for people with Lyme. When I was first diagnosed and reading about the disease, I couldn’t figure out why there were links to suicide prevention lines. I get it now."

Transmission without a tick

2010-12-19T23:26:00.000-08:00

Lyme can be sexually transmitted.
I used to think it rare, and was more from men to women but then I have met, here in Austin, couples that come to support groups where they both have it but one is sick with it and they put all their energy into THAT partner and don't treat the other at all. In most cases because it is so expensive.
And what are they doing to prevent further spread from one back to the another?

I have also met a lesbian woman that transferred her disease in the beginning of her relationship to her partner. The partner is handling it ok and can work but the other woman is so ill her mother moved in with them to take care of her daughter. Her daughter's pain is in her head and all down her spine. The mother calls me from time to time to ask for advice on medicines and other things. We got sick at almost exactly the same time. I was told Wed though that the pain meds I am on that I told her mother about her daughter tried it and it has helped her a lot.

Lyme can be transferred in-utero and through breastmilk. In another case I know of, through two different people here in Austin, a lesbian couple got a sperm donation from a friend of theirs they didn't know had Lyme. The donor didn't either. It was transmitted to both the mother and child. The child is 7 and I'm told she has her good days and days where she can't get out of bed at all.
I find the way all of these important facts on it's transmission have been turned into secret little anecdotes that are only shared person to person is frighteningly unconscionable. These facts need to be shared with the public.
In all cases, without treatment the disease progresses.

Great news and not fabulous news

2010-12-18T22:15:00.000-08:00

Doing really well. Pain and fatigue are both low. I can take over the world!
All due to IV Myer's cocktails: (contents: Calcium, B6, B12, B complex, Vit C and magnesium). I actually went out by myself with the kids and we did a bunch of errands and got some Christmas gifts from a few stores and went to Hoppin House THEN out to eat and I wasn't exhausted.
That's the great news!

The not fabulous news is Dr J says he wants to "challenge" me a little bit. yay.
So it will be 2 IV antibiotics- Levaquin and Merrem and 2 oral antibiotics- Rifabutin and Flagyl.

So many antibiotics in my world the past 2 years. I rarely stop to think about it. I refuse to look at the actual or possible damage that does/could occur past systemic candida. But I know there are many. But no other treatment choices for someone with late stage Lyme.

I am just so happy though that there is SOMETHING that deals with the pain and makes my body feel so much better and kills the fatigue some. Thanks, God!

Thursday Dec 9, 2010

2010-12-09T20:44:00.000-08:00

Tonight little one wet the bed and was crying when I was taking a saline IV ringer on an IV stand. I took the saline bag off the stand and held it and went to him. It was a challenge to wrestle and coax a very fussy child, undress him, sheets etc. attached to an IV bag. Ha ha! But I bit the top of the bag to hold it and then had 2 free hands. Husband helped.

I have been doing high doses of IV Vit C and something akin to an IV Myer's Cocktail. For the rest of that day I had no pain.
I did 25 grams of Vit C Mon, 50grams on Wed and will do 75 grams on Friday and stay there for... well, who knows really? I don't care, I am just so happy I have 3 days a week where the pain is relieved. I need to stay cautiously optimistic and happy because there are no guarantees on the future and health and such, right?

The Myers' cocktail is composed of nutrients that are recognized to be deficient or involved in a variety of pathologies and chronic diseases: Magnesium, Calcium, Vit B12, B6, B complex, Vit C.

Now time for a positive post

2010-12-01T22:25:00.000-08:00

Positive post. Over the Thanksgiving holiday I was in bed for much of it because I was dosing but I did get out and made some cute gingerbread houses and gingerbread christmas trees with one of my kids and 2 of the neighborhood kids that were here. A 3 yr old, a 5 yr old and a 7 yr old. I'll try to get some pictures of them and post. They came out so cute.
I also decorated our whole house inside and out (only low hanging things though- ladders are bad- balance not good at all) with decorations and it looks great. Christmas is in our house.

New pain game plan

2010-12-01T11:14:00.000-08:00

I know it sounds strange but you do get used to the pain and you do live with it. Sometimes you don't even know it's there when it is. For me that's when I am out with other people in a social setting, enjoying other people which is one way I try to do as many social things as possible.

But I finally realized that when it's always there then you try to ignore it and you don't notice when it gets really bad. I am going to start paying attention and when it makes be break out in a sweat, or makes me make pain noises like groans out loud when I am trying to get things done either at home or in public (embarrassing- but I swear sometimes I don't even notice it!), that's when I need to to give up whatever it is that I am doing, go to bed and not answer the phone or talk to anyone. That way I won't yell at the husband or the kids or start crying and wanna give up again when it's that intensity.

And what do you say when it's been two and a half years since you've gotten sick and someone says "How are you doing? You ARE getting better, right?"
You look like a total faker or masochist if you give them a factual answer, which, taking them at face value is what they asked for, right? Assuming that, how can you answer "yes" or "no" or get close to summing up a factual experience for them? Do you say "I think so."? Or are you supposed to lie and say like a teenage cheerleader from your wheelchair "TOTALLY BETTER!"

Good Thanksgiving

2010-11-28T19:42:00.000-08:00

Good Thanksgiving. Good friends/family.

It was also the first day of dosing this round. Third month of this protocol. Flagyl, IV Merrem, Septra and Rifampin. That first day brought a ton of foot and leg pain. But then the cold front was coming in too. The pain got better after that. So I am enjoying that. Made gingerbread christmas tree and gingerbread houses with my sons and the kids that run through my house every day. Accomplishment. I was tired after that and Flagyl makes me nauseous and weak. But it's not bad. Not like Tigecycline.

I am in the process of trying to persuade a local hyperbaric place to let me do a protocol for Lyme there. They have to talk to the powers that be. It's off their standard program. Wish me luck. I would pay out of pocket. $8-$10,000. If I did that protocol I think my Lyme tab would be up to about $140,000. Not total costs that insurance pays, that's out of pocket.

November 19, 2010 2 yrs since my Lyme Diagnosis

2010-11-19T21:56:00.000-08:00

I often wonder why I am sick lately as it will be 2 yrs I was diagnosed this month and 2 and a half yrs I have had the horrible pain. I had no idea at all healing would take this long.

If I didn't have the pain I think I would have much to offer. I could do a lot of good. I could teach teen boys in jail to paint landscapes like I used to. I could work at Hospice. I find I offer all that up to God and try to persuade him to let me outta this so I could do good but he doesn't . Lately I've been mad at him. I guess I'll come out of it. I'll come across a way he is still in my life and forgive him or something. Then berate myself for letting my faith go away for a little while. Will wait patiently to feel that way again.

2 Year Anniversary of my Diagnosis today

2010-11-19T00:01:00.000-08:00

That'senoughofthatnowit's12:01soIneedtogettobed.

Today - a gift from...

2010-11-18T18:45:00.000-08:00

Yesterday the pain from my feet and calves were so incredible in intensity. I was shaking worse than I had ever before. I was in the wheelchair just to go around the house. I had to take my 9 yr old to the doctor (his). He helped me. He even tried to get the wheelchair in and out by himself but it is way too heavy, the little sweetie. I can barely manage it.

Today I had a really good day. The last one I remember for sure was April on the lack of pain and on severe malaise together. So go figure. My foot pain is great and the malaise and fatigue is gone. It is amazing. And there was nothing that I did yesterday that was unusual that would have helped anything today.

Today my body woke me at 5, which is an hour and a half earlier than normal.

(aHH! is this how it starts?! you're middle aged when you go to sleep and when you wake up you're a "senior"?! )

My little one came in at 5 saying he was going to throw up. (and eventually he did) and had to stay home from school. I took care of him and had some naps with him til11am but after that, no resting or naps and it's 11pm and I'm still not tired!

I wrapped Christmas gifts, played in the playroom with kids, took care of my sick 5 yr old, and "jammed" with him on guitar and bass when he felt better. I felt just like a normal person. Man, if this is what it feels like to be normal then I'm high on drugs! Who would ever need drugs?!
Thank you to whatever/whoever did this. I don't even know who or what to thank anymore.

Nov 15th Dr J appt

2010-11-16T20:54:00.000-08:00

Appt with Dr J yesterday over the phone. On me taking almost two weeks to come back and not feel like total hell, he thinks that my immune system is coming back and is more overreactive so it takes me longer to come back from the drugs. Also thinks that toxicity is an issue. So he gave me next week on for one week on and 2 weeks off meds.
So I will be ON Merrem IV, Septra, Flagyl, Rifampin orals for Thanksgiving week and off the following 2 weeks.
Then I start Levaquin IV Dec 13th through Dec 24th for two weeks. New drugs added:

B-12 SHOTS
DEPLIN
RESVERATROL
ACETYL L-CARNATINE
VOLTAREN GEL

So that's 23 different drugs now on the daily schedule. (weren't you keeping count?)

2010-11-13T16:51:00.001-08:00

• Lyme history 2010 there's a "perfect storm":

1. In 1980 the US deemed it legal for Government and Universities to

PATENT AND PROFIT FROM LIVE ORGANISMS. The Lyme organism was discovered in 1981. Then they say there was a sort of an "Oklahoma land grab".

2. Now government and universities are patenting parts of the organism often on the "federal dime"and information is no longer shared in order to PROTECT FUTURE PROFITS. See this movie. Or contact me and I can lend or buy you a copy. Fascinating, really.

• In other words, "deregulation has led to a climate in which science favors profits over medical necessity".

Reaching "the math" total

2010-11-13T15:44:00.000-08:00

Yesterday my neighbor asked how I was doing and I tried to be general but she kept asking more and wasn't daunted by my answers the all people are. Then the more I talked the more I was
"doing the math" of my life,
past and present in my head:

• Testing is extremely flawed with many many false negatives. The most accepted-as-accurate test that exists often fails to show how much infection is in one's body to even "throw the doctor a bone" beginning and during the course of treatment. So they do a lot of guessing.

• There is no money being put into research which would help develop a more accurate test.

• There is no standard course of care. Treatment is like throwing a whole store full of really expensive spaghetti and seeing what sticks.

• "Deregulation has led to a climate in which science favors profits over medical necessity". Click or see post above.

• Longterm antibiotic treatment seems to be what works best- orals and/or IV for many years.

• Being over-medicated with antibiotics have the same symptoms as Lyme disease.

• You risk becoming antibiotic resistant.

• You risk getting a systemic yeast infection.

• Your teeth do turn dark and you risk getting "cavitations" in them with longterm antibiotic treatment.

• It is sexually transmitted. I have seen this more often than not in support groups.

• It is transmitted in-utero. I have seen this more often than not in support groups.

• There are no doctors who are allowed to treat Lyme in Texas. Texas Medical Board doesn't like it. Lyme doctors are "persecuted" for things like very small record keeping errors but the docs know its because they treat Lyme.

If you don't believe me, go on any Lyme website for example- lymefriends.com and see that no one is allowed to mention any doctor by name. It's the same on all the Lyme support sites.

• There are only a handful of doctors who treat Lyme in the US and they are persecuted as well.

This is because the Infectious Diseases Society (a national organization) has maintained for a long time that there is no chronic Lyme. They call it "post Lyme syndrome". No one is clear why this is. Some say IDSA insists there is no chronic lyme because they don't want to lose face changing their mind. Some site other reasons. See text pasted from IDSA website here.

"The Infectious Diseases Society of America’s (IDSA) 2006 Lyme disease guidelines reported there is no convincing biological evidence for the existence of chronic Lyme, nor has long-term antibiotic therapy been found to be useful after the completion of short-term treatment. In fact, long-term antibiotic therapy can be harmful, sometimes leading to deadly complications."

• The doctors that treat it exclusively are extremely expensive. I have what I consider to be good friends with Lyme online all over the country that are going broke, losing their houses, spending their kids' college money and disability is the only thing that puts a bandaid on their broken legs.

• I am in chronic nerve pain. It feels like fire lit under my calves and feet and like I am being slit with a very sharp and clean-cutting knife in those areas. Sometimes it's ok but more often that not, the pain is very severe.

• The pain is at the mercy of any changes in the weather.

• I have a family with children to care for. For Christ's sake!- 2 active boys that seem like four.

• They don't ask me to play anymore.

• They are in elementary school (ages 5 and 9) and need me.
• One child has complex layers of problems that need my attention

• I can't do the daily mom tasks because of severe malaise and fatigue and pain with any weight on my feet. I was in a wheelchair for 9 months in the beginning of treatment. 4 of those months I had no idea what was wrong with me.

• I have had to have an expensive nanny to "be me" for 2 and a half years.

• Of all the things I have been and wanted to be, stay-at-home mom was at the top of the list.

• The five year old doesn't remember a time when I wasn't sick. Asked me where my wheelchair was when looking at my wedding picture when he was 3.

• Other questions and comments from the kids: "Mom sometimes I think 'why you'?" "Mommy, did you kiw (kill) d bugs yet?" "Mom, why don't you want to be around me anymore?" "Mom, I know it's not my fault but I always feel like it is."
"Mommy, I've been meaning to ask you...how did you get your 'Wyme' Disease?"
Kinder teacher to class:"What's the most dangerous predator?" My child : "A tick."
"How do you GET Lyme Disease?" Try to answer that one without scaring the child AND without lying.

• I sleep 16 hrs a day and am in bed doing as much mom stuff as I can in bed about 3 of the 5 hrs left in that equation.

• I've had 9 months of oral antibiotics only and 11 months of IV and orals.

• This feels like it's going on f-ing forever and there is no end in sight.

• All I want to do is take care of my family and if I can somehow get there, volunteer with adolescents in lock-down like I used to (teach acrylic painting) and work with the dying in Hospice.

When I was answering my neighbor's questions I started crying as I finished "the math" and reached the total. But she helped me see the ways I was doing better.
Thanks to Sylvia.

Click HERE.

What My 9 yr old said to me

2010-11-13T00:38:00.000-08:00

The other night my 9 yr old wanted me to do something and I was in so much pain I couldn't and told him I couldn't because the pain was so bad. He stroked my hand and said
"I know it's not my fault but I feel like it is."

That killed me. I had handled it though probably a yr ago, before he expressed any of those feelings but I guess kids need to hear it more. I covered it well the other night after that though. Told him he didn't even know how much he helped me and listed the ways. So sweet he smiled and hugged me so hard for a "long-ish" amount of time.

"Stay-at-Home" or "Lay-at-Home Mom"?

2010-11-12T13:39:00.000-08:00

Today I calculated that I sleep 16 hrs a day. Off meds.
Up 6:30 to 7am.
Sleep 7-12 noon
Up 12-7 pm
Sleep 7-11 pm
Up 11-1am
Sleep 1-6:30 am

Lesbian Couple and their child

2010-11-09T22:30:00.000-08:00

My friend told me her friend knows a lesbian couple in our town that wanted to have a child. So a male friend of their's donated for them. He had not been feeling that great but it was no big deal. Only it was a big deal. Cause he had Lyme Disease.

With that conception the mother and the child both contracted it. The girl is 7 yrs old now. Some days she feels ok and some days she can't get out of bed. I have no idea about the mother.

I am trying to come to grips with the order of the universe. My old "every 'gosh-darn rough patch' teaches you something" is not working anymore. The "God only gives you what you can handle"has beyond pissed me off. And the unfairness is making me really bitter when I don't wanna be.

Today

2010-11-09T22:29:00.000-08:00

Last night I had a migraine so bad. So I took something for it, it wasn't working. Then another and another. (forgot all of what I took). None of it was working. I've had this happen before. It's when your body is so drug- loaded it can't absorb anything else. I was in agony and couldn't relax to try to go to sleep.
Finally it started working but I was so over-medicated I knew it would affect me this morning. Of course I had to miss my kinder's "kinder lab" time AGAIN. Hate that so much.
Woke at noon. So weak all day long. Couldn't keep the weight of my head up. Went out to eat with husband. First thing I noticed was the noise in the restaurant so I put in some ear plugs immediately. I put my head on husbands shoulder or the back of the booth. I think he wanted me to be my old self or more snappy or something so he kept riding me in the disguise of being concerned.
He kept saying "Ya ok, hon? Ya need to go home, sweetie? Honey, you're fading here. You sure you're ok? Maybe we'd better get this to go..."
over and over I finally got a mad and told him that this is me. This is it. I feel like hell all the time. This is just it. I feel like hell but I get to go out to eat while I feel like hell and I have a good time the way that I am and I/we just have to be ok with that.

Predators and Prey

2010-11-09T22:16:00.000-08:00

We're predators that's why our eyes are in front. Prey have their eyes on the sides of their head so they can see if something's coming. I wonder how our eyes have to evolve to prevent microscopic bacteria you can't see or feel from entering your body.

Yesterday

2010-11-07T11:12:00.001-08:00

Yesterday husband woke me up at 10:45am for a Lyme support group meeting at 11am. I went in the clothes I slept in the night before which were also the clothes I wore the day before. I used the walker. Everyone went around and talked about what treatment they were doing. They stayed for a long time on me, asking me questions. I guess cause I looked the sickest, which is always really just so so uncomfortable everywhere you go. You're always the giant sick stupid elephant in the room. It sucks. A guy asked to see my PICC line so I rolled up my sleeve and showed it to him.
I learned more about some treatments I was considering- Ozone therapy and another one I forgot. I think it was hydrogen peroxide.
Ozone therapy is a form of complementary medicine reputed to enhance immune system functioning. The theory behind its alleged therapeutic benefits resides in the belief that ozone, a gaseous allotrope of oxygen, may prevent or reverse disease by helping the body to better transport and metabolize oxygen. Ozone therapy is also thought to deter infectious disease by neutralizing invading bacterial enzymes that are responsible for viral infection and replication in white blood cells.
The people at the meeting were all so nice, especially Rosemary, who had opened up her lovely home for the meeting.

I couldn't keep my head up and leaned back with legs on husband and head on arm of couch. She brought me a blanket and pillow and I fell asleep right there in the meeting with all the talking and everything. Husband woke me up to leave. I went home and had a lot of pain so I fell asleep again at 2pm til 7pm. I guess Flagyl wiped me out.
I've decided I am not going to do this next round of Tigecycline and I feel more a part of the living already. I hope my Dr sees it the same way.
I can hear the boys crashing around into something upstairs over and over. But there's no way I could get out of bed much less get out, walk there, AND stop it.

Got a System Down

2010-11-04T22:55:00.000-07:00

I dose a bag of saline water to make sure I'm hydrated. Then I do an IV dose of antibiotics and other oral antibiotics in the evenings on Mondays, Wednesdays and Fridays. I feel weak and in pain, but not too bad, til about 4pm the next day. I just try to sleep a lot. Then I dose another IV bag of saline water so I can detox. It's working well for this Merrem, and I can plan things which is great. But I know it won't be this way for Tigecycline for sure, which is next.
I used to pray a lot on Tigeh. I've got psalm 139 and the 23rd psalm posted on the dresser side that faces my bed. I've had them there so long the pages are curling with little rips.
I took them down. I've quit praying for an undetermined amount of time. And don't give me that Job ("Jobe") shit. I hate that story.

2010-10-31T14:46:00.000-07:00

Sometimes I get disheartened. But I listen to music, and it lulls me back to wanting to want to live.

Depressing I know, but it's just like that.

"An Ending" by Spooky

"The Magnificent Tree" Hooverphonic

"I Remember" by Deadmau5 and Kaskade

Soundtrack from "Happyness"

"Sweet Dispostion" by Temper Trap

"1901" by Phoenix

"Blind Hearts" by Clan of Xymox

"Skin and Bones" by The Sundays

"Breathe" by U2

stuff by The Boards of Canada

"Every day I die again and again and reborn.

Every day I try to find the courage to walk out into the street with arms out. Got a love you can't defeat. Neither down nor out..." - "Breathe" By U2

2010-10-31T13:45:00.000-07:00

45 mins til a Halloween block party and even though I will be in the wheelchair I am praying for the stinging in my feet to get better. I already missed a Halloween contest husband judged an hour ago and I am determined not to miss this party and the trick or treating afterwards.
It's hard when it gets this close to the day of my diagnosis 2 yrs ago. Its in 20 days. I remember how panicked I was in the wheelchair 2 Halloweens ago and didn't know why. I remember how on my diagnosis day I was stupidly relieved. Life's divided into the time before illness and time after that.

Parent/Teacher Conference

2010-10-31T13:33:00.000-07:00

During our first Kinder's parent/teacher conference the teacher said she asked the class what the most dangerous predator was and my 5 yr old said "A tick."
Today I did the math and figured out he doesn't remember me when I was well.

More from Lyme Patient - Nicole

2010-10-29T21:20:00.000-07:00

A teenager in BC, Canada. A virtual virtuoso in all kinds of music and instruments. Her blog is called Bite Me .

I hate to hear it when someone's life is just starting and they have this illness. All her writings are so sweet and postive, most times. More from her:
"I sometimes let myself wonder what life would feel like, if I was well. Sometimes late at night, when I have much "alone-thinking-time", I suddenly panic when I can't remember what the sensation of running was like; what the emptiness of a fern covered forest smells like on one icy winter morning; what the exact sound a water-bomb smashing into your arm makes. Its these sort of things that keep me up at night."

Friday October 29, 2010

2010-10-29T21:07:00.000-07:00

I "kicked ass" helping today in both my sons' Halloween parties at school . Had so much fun. In the Kinder class I painted faces. Almost all the children wanted something different (a tiara? a vampire?) that it was an artistic challenge plus a lot of fun. (Look, Dad! I'm using my art degree!) In the 4th grade class there was pumpkin punch, decorate a picture of the teacher in a gruesome way, glitter bugs station, bread baked like bones, ghoulish fingers made out of cheese sticks, fruit kabobs, tattoos, packed favor bags, and more my Martha Stewart room mom partners came up with that I can't remember.

But I had to walk far and with a lot of stairs between the classes. Came home and nursed the pain and was so weak I couldn't do anything but lie on the couch.

Last night I fell asleep with the Anodyne (infrared) machine strapped to my calves and when I woke in the middle of the night they had burned me so bad some of the skin peeled off. The pain is nothing compared with the neuropathy in the calves so it's no big deal. I know it sounds gross but I found it funny that I fell asleep and didn't wake up til the skin was so burned it peeled off.
(Maybe "black comedies" originated with chronically ill people?)

Nicole

2010-10-29T20:56:00.000-07:00

Weird how different Lyme manifests itself. It seems to be different in everyone.
But intense pain is always the same.

Nicole, a teenager from Victoria, BC, Canada. Blog:http://bitemeback.blogspot.com/ writes:
"I have been doing these incredible drugs (oh i sound like an addict: "but they are not addictive"),

a pain patch of fentanyl, but is really working, vicoden, gabapentin, low dose naltrexone (ldn) and IM ketamine. too many narcotics for my liking...

i fear becoming addicted to them, although i argue that if i wanted more drugs, i couldn't exactly crawl there and get them lol. this combo seems to be working well, although it is not strong enough. it makes me more able to ignore the pain and such than drop it by more than a point or two on the pain scale. except the IM ketamine, which drops my pain to about a 5-6. so wonderful!

when i was on cape breton island,

i had a terrible herx, and was just silently screaming and so beyond speaking with torturous pain, and so they took me to ER,

and i got a few high shots of demerol, which is supposed to work better than morphine, which it did. stayed overnight but it eventually worked. somehow got on the plane later in the day. it was the only flight out lol. not alot of fun."

10-28-10

2010-10-28T18:00:00.000-07:00

Oh my gosh, the weather is going to change drastically tomorrow. Cause day before it delivers fire and cutting in my legs and feet so so bad. Right now I cannot get out of bed to wash the soap off my face, brush teeth, or go miles to the kitchen to find something for a meal I should have eaten 3 hours ago. Plus, let's say for example someone is getting their calves sliced open with a knife on fire. If you say "Are ya hungry?!" they probably wouldn't address your question. More likely it would be "I'M ON FIRE! OH MY GOD HELP ME!"

10-27-10

2010-10-27T23:04:00.000-07:00

Meds going after the coinfections and I must really be getting them. 5 mins into iv eds, my head is pounding. Moves into my whole body pounding as I can feel the blood moving when the heart moves it.

Typical herx only this one is messing with my head. Trying to keep it together. Even IV saline ringers designed to wash out your system make me herx. They stir things up again. IV nurse says if I can't do two sets of meds a day, do one, and take a xanax for christ's sake. So I am doing half the meds. I was in the house mostly in bed for 24 hrs before I sucked it up and went out to eat with 9 yr old tonight. I drove with sunglasses on even though it was after dark. Lights bother me a lot. Sounds bother me. I wear earplugs. 30 watt lamp too bright. Music has been incredible. I'm super sensitive to that as well. Glad it's only temporary. Two weeks. Couldn't exist like this in the real world.

funny

2010-10-27T20:27:00.000-07:00

I was saying to husband in email that I hated dragging the boys and him through the bowels of hell with me in this disease. His response. "Do you remember when we said our marriage vows, the part about how promised to drag each other through the bowels of hell and that we were both ok with being dragged in that manner? ‘Member?"

Talked to IV nurse

2010-10-21T19:56:00.000-07:00

Gave me 2 more weeks Merrem. Then Thanksgiving week I start the make-you-want-to-die drug -TIGECYCLINE again for 2 weeks for "the big finish" she said. Then I can have my picc line out. It will be 11 months. I've been on IV treatment so long the office is giving me a discount on my $2000 "because-you-are-on-IV-meds" a month fee to the office. (Doesn't cover office visits or drugs.) Then after I get my PICC out it will be another 2 yrs on oral antibiotics. Then he thinks I will be "all well" or something like that. His hope gives me hope I guess.

A side effect of Tigecycline is "rapid weight gain".When I told IV nurse I was 152 already (had not even weighed that much when I was pregnant and had been 115 for 25 yrs) and that any weight I gain I am not losing, IV nurse said that one patient weighed 104 when she started IV meds and got up to 180 on them. Then she fractured her leg and had to get off IV meds, she lost 50 pounds in 4 months. That gives me hope too.

Lyme Patient - Sonya

2010-10-10T22:16:00.000-07:00

This blog title captures it for me dead on:
"Something is Killing Me
Dramatic, I know. But that is how it feels sometimes. Like I am dying..."
- lyme blog by Sonya

Emotional Tolls

2010-10-10T20:53:00.000-07:00

Words from dawn's blog:

"SUNDAY, OCTOBER 10, 2010

"Our Sustainer

As I start this post, I am not so sure what to say. It has been kind of an emotional and physical roller coaster this week. To be quite honest, treatment has been hard, and it has been a struggle to keep my eyes focused on Jesus and to remain hopeful. It's taking everything I can muster to hold tight to my Savior. However, I think it's important to let my readers of this blog see both sides of the journey. The happy, "correct focus", hopeful and joyful side, but also the struggle as your body fights the disease and the emotional battle of the unknown and the stresses that this disease brings. I know I have explained before how this disease hits you on so many levels. Not only do most people struggle physically, but since the bacteria has invaded your brain, it messes with you neurologically which leads to a roller coaster of emotions that you have to battle.

So, it's been a fight this week. It's been hard to fight the doubts and discouragement. I watch so many of my friends who have seen multiple Lyme doctors, been through all kinds of natural and conventional treatments only to be suffering day in and day out with no end in sight. It breaks my heart that there just hasn't been enough research done on this disease to help bring relief to this hurting community. I am sure things will be different in 20 to 50 years, but until then, it's hard to watch the difficult journeys unfold. I wish all of them could be well. I wish that they could play with their children, be a part of church ministries and perform normal day to day activities, but many of them have not gotten there yet. They are working hard and doing everything they can to get well, but are still falling short. Please pray for those that are suffering from this disease. We need to go to battle spiritually and intercede for those that are hurting..."

2010-10-10T19:26:00.000-07:00

On a med holiday. Can't remember if it's two or three weeks. Foot pain comes and goes and I canNOT figure out what is controlling it. Frustrating since I would go where ever the pain is not but I can't find that place.

2010-10-07T12:35:00.000-07:00

I need to get up to get some water so I can move some of this inflammation. But I have to work up the energy to do it and talk my mind into bearing weight on my feet. They sting real bad.
First day on this round of Flagyl which bursts cysts. Since Lyme are actually intelligent organisms, cysts are one of the forms that Lyme goes into when they sense the presence of antibiotics. I'm happy about the progress and doing well.

2010-09-22T05:27:00.000-07:00

from "4islands" at dailystrength.com

"Wow! This has been an experience I wouldn't wish on my worst enemy.

I had no idea that finally getting a diagnosis would lead to over a week of pure hell trying to find a LLMD.

Everytime I have gotten my hopes up with a drs. name they aren't taking new patients and/or have outrageous fees.

I was given the name of a dr. whose office says the NP can see me for a $500-600 initial visit and $180 follow-ups. I

I don't have out-of-network w/ my insurance so I cannot afford that.

It seems like such a scam that these drs. would charge so much when they know the situation.
Are they truly in it to help or in it for the money I now have to wonder?"

4 islands is experiencing the extreme shortage and fear that is the medical community here in the US and especially in Texas regarding the treatment of Lyme. I believe the high cost is due to the complexity of it's treatment and all the extra help (phone calls etc) from staff over years of recover time and the at-risk cost (malpractice suits, high possibility of business being shut-down from state medical boards for doctors who treat.

2010-09-20T15:31:00.000-07:00

I found a Valentine's Day card my husband made:
"Happy Valentine's Day!
I PICC you."

More rain. Ow.

2010-09-20T15:25:00.001-07:00

2010-09-09T05:35:00.000-07:00

Pain seems to have been somewhat controllable since last dosing two wks ago. But when the big rains have been for these what? something like 4 days now...ouch. Pain was/is bad. I just have to go to bed and get off my feet that way. If it's really bad I go to sleep and when I wake the pain is low. Memory and balance are bigger issues this week.

Warning: moderate gross factor

2010-09-02T17:37:00.000-07:00

The Austin PICC line "medical installers" really need a lesson from the Virginia PICC line "medical installers". I feel like my arm is a piece of raw meat. I mean check this out:

Austin PICC "install":

Virginia PICC "install":

Need to learn to do everything with the left arm now.
Between that and doing too much yesterday, last night I slept 12 hrs. Up to get kids to school. Back to sleep for 4 hrs. Couldn't get out of bed til 1pm and that was only because I had to for a maintenance guy.

Supposed to start up antibiotics again tomorrow.
Going to try to rest some more.

2nd PICC line installed today

2010-09-01T17:33:00.000-07:00

ouch.

2010-08-28T19:49:00.000-07:00

This is the best info I have seen on peripheral neuropathy so I am cutting and pasting. It's long - skim over it but you can also go here to read more.

Peripheral neuropathy is a problem with the nerves that carry information to and from the brain and spinal cord. This can produce pain, loss of sensation, and an inability to control muscles.

"Peripheral" means nerves further out from the center of the body, distant from the brain and spinal cord.

Neuro" means nerves.

"Pathy" means abnormal.

The symptoms depend on which type of nerve is affected. The three main types of nerves are:

Those that carry sensations (sensory)

Those that control muscles (motor) I have muscle jerks.

Those that carry information to organs and glands (autonomic)

Neuropathy can affect any one or a combination of all three types of nerves. Symptoms also depend on whether the condition affects the whole body or just one nerve (as from an injury).

Longer nerves are more easily injured than shorter ones, so it is common for you to have worst symptoms in the legs and feet than in the hands and arms

Damage to the motor fibers interferes with muscle control and can cause weakness, loss of muscle bulk, and loss of dexterity. Sometimes, cramps are a sign of motor nerve involvement.

Other muscle-related symptoms include:

* Difficulty breathing or swallowing

* Difficulty or inability to move a part of the body (paralysis)

* Falling (from legs buckling or tripping over toes)

* Lack of dexterity (such as being unable to button a shirt)

* Lack of muscle control

* Loss of muscle tissue (muscle atrophy)

* Muscle twitching or cramping

AUTONOMIC SYMPTOMS

The autonomic nerves control involuntary or semi-voluntary functions, such as control of internal organs and blood pressure. Damage to autonomic nerves can cause:

* Abdominal bloating

* Blurred vision

* Constipation

* Decreased ability to sweat

* Diarrhea

Difficulty beginning to urinate (urinary hesitancy)

Dizziness that occurs when standing up or fainting associated with a fall in blood pressur

Feeling full after eating a small amount (early satiety

Feeling of incomplete bladder emptyin

Heat intolerance with exertion

Male impotence

Nausea or vomiting after meals

Unintentional weight loss (more than 5% of body weight)

Urinary incontinence

_______________

So the nerves that are affected for me mainly are the sensory nerves. The ones that feel. I have symptoms in some of the other categories but the one that inhibits my life the most is in sensory. My feet and legs feel like they are being cut and burned. It varies during the day depending on where I am with pain meds but it's been this way for over 2 yrs now. I am getting better now though and I have had some really great days.

2010-08-27T21:22:00.000-07:00

Stumbled onto a new Lyme blog called "Bite Me" Hilarious.

Symptoms of Lyme

2010-08-27T21:14:00.000-07:00

Symptoms of Lyme Disease

    * The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)
   1. Rash at site of bite
   2. Rashes on other parts of your body    3. Rash basically circular, oval and spreading out (more generalized)
   4. Raised rash, disappearing and recurring

          * Head, Face, Neck
   5. Unexplained hair loss
   6. Headache, mild or severe, Seizures
   7. Pressure in head, white matter lesions in brain (MRI)
   8. Twitching of facial or other muscles    9. Facial paralysis (Bell's Palsy, Horner's syndrome)
10. Tingling of nose, (tip of) tongue, cheek or facial flushing
11. Stiff or painful neck
12. Jaw pain or stiffness 13. Dental problems (unexplained)
14. Sore throat, clearing throat a lot, phlegm, hoarseness, runny nose

          * Eyes/Vision
15. Double or blurry vision 16. Increased floating spots
17. Pain in eyes, or swelling around eyes
18. Oversensitivity to light 19. Flashing lights/Peripheral waves/phantom images in corner of eyes

          * Ears/Hearing
20. Decreased hearing in one or both ears, plugged ears
21. Buzzing in ears
22. Pain in ears (stabbing), oversensitivity to sounds
23. Ringing in one or both ears
          * Digestive and Excretory Systems
24. Diarrhea
25. Constipation
26. Irritable bladder (trouble starting, stopping) or Interstitial cystitis
27. Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

          * Musculoskeletal System
28. Bone pain, joint pain or swelling, carpal tunnel syndrome
29. Stiffness of joints, back, neck, tennis elbow
30. Muscle pain or cramps, (Fibromyalgia)
          * Respiratory and Circulatory Systems
31. Shortness of breath, can't get full/satisfying breath, cough
32. Chest pain or rib soreness
33. Night sweats or unexplained chills
34. Heart palpitations or extra beats 35. Endocarditis, Heart blockage

          * Neurological System
36. Tremors or unexplained shaking
37. Burning or stabbing sensations in the body
38. Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
39. Pressure in the head
40. Numbness in body, tingling, pinpricks
41. Poor balance, dizziness, difficulty walking
42. Increased motion sickness
43. Lightheadedness, wooziness

          * Psychological well-being
44. Mood swings, irritability, bi-polar disorder
45. Unusual depression 46. Disorientation (getting or feeling lost)
47. Feeling as if you are losing your mind
48. Over-emotional reactions, crying easily 49. Too much sleep, or insomnia
50. Difficulty falling or staying asleep 51. Narcolepsy, sleep apnea
52. Panic attacks, anxiety
          * Mental Capability
53. Memory loss (short or long term)
54. Confusion, difficulty in thinking 55. Difficulty with concentration or reading
56. Going to the wrong place
57. Speech difficulty (slurred or slow)
58. Stammering speech
59. Forgetting how to perform simple tasks

          * Reproduction and Sexuality
60. Loss of sex drive
61. Sexual dysfunction
62. Unexplained menstrual pain, irregularity
63. Unexplained breast pain, discharge
64. Testicular or pelvic pain

          * General Well-being
65. Phantom smells 66. Unexplained weight gain, loss
67. Extreme fatigue
68. Swollen glands/lymph nodes 69. Unexplained fevers (high or low grade)
70. Continual infections (sinus, kidney, eye, etc.)
71. Symptoms seem to change, come and go 72. Pain migrates (moves) to different body parts
73. Early on, experienced a "flu-like" illness, after which you have not since felt well.
74. Low body temperature
75. Allergies/Chemical sensitivities
76. Increased effect from alcohol and possible worse hangover

Bullseye rash on 9 yr old

2010-08-27T15:44:00.000-07:00

One of my closest friends who has been with me through all of this way back to the first symptoms of migraine in 2002 found a bullseye rash on her son. Knowing what she knows now, she knew it was the rash characteristic of Lyme. She didn't even test her son since tests are unfortunately so unreliable but asked for four weeks of antibiotics instead. They gave her Amoxicillin instead of Doxycycline though and Doxycycline kills a whole lot more types of bacteria than about any other antibiotic. But at least he is on something.

PICC line fell out

2010-08-27T15:33:00.000-07:00

My PICC line fell out yesterday. The tegaderm patch was loose around the entry point and it was caught very loosely around the leg of the IV pole enough so it just slid out. No pain or anything.
I found a hospital to do the PICC replacement but they won't take DC orders or any Dr's orders out of state. Good ol' Texas. My PCP doesn't work on Fridays and the other docs there won't order it. Not sure why and that part is frustrating.
Infusion nurse said it won't be a big deal to have it out for four days before it's replaced. So we will do it on Monday. No big deal, just a local. Takes about 5 mins to get it in. I am so tempted to go jump in a pool this minute. 97 degrees.

One's Naps and Children

2010-08-24T09:53:00.000-07:00

It was a dosing day yesterday. (I dose MWF and take TTh and the weekend off- it's called pulsing).

I felt good during the holiday over the weekend and could even do some of my responsibilities on dosing days and that was amazing. But during dosing days if I did too much, I felt horrible. Did a lot yesterday and was so so tired and feeling bad by the time the kids got home from their first day of school. I was hoping the babysitter would take them somewhere or distract them for a little while so I could sleep some.

Five year old came into my room and hugged me hard. (first day of Kinder) He liked it but said he missed me with a little tear.

Then for the first time he declared it "Mommy day" and said that means I get to be with him all day and do whatever I wanted. Before I could answer he said "Wanna watch a movie?" (he knows thats really all I do these days with them). So we watched a kids movie. He got so closely tight right next to me and wiggled and squirmed the whole time. I was so exhausted by then I was falling asleep sitting up and waking up whenever he squirmed and tried to talk to me. I felt bad but I finally had to tell him that I was having fun but I HAD to take a nap. He said ok and put his thumb in his mouth and walked out of the room.

We spent some time together reading before bed. Can't wait til they are not at the expense of this illness.

Dosing Merrem and Vitamin C

2010-08-23T06:02:00.000-07:00

I dosed Vit C last week once at a quarter of the dose my father-in-law says I should- he's very adamant about the dosage as he read it online from google search. I wonder if I can get my doc to prescribe it all the days I don't dose IV meds. (IV doc doesn't want it on those days.) I am willing to try a higher dosage.
On non-dosing days I have been seeing some improvement for now. Cautiously optimistic.
Two big gains (for now):
I walked to the bus stop today with husband for the kids first day of 2010 school yr. No walker or car. One of my neighbors standing at the bus stop with her child and husband said she heard the Rocky Theme in her head as she saw me coming down the street.
Then yesterday I walked to the house behind ours ( it's not a very short walk) to watch our kids, husbands and other kids in the neighborhood swim. I can't swim cause of picc line. I stood in the water on the top step- something I haven't really done in awhile. Just stood there silently enjoying the no pain and five yr old swam over to me, grabbed my ankles and yelled "Mom! Your feet! You have feet!" Then to the other kids in the pool: "My mom has feet!"
They just stared at him like he was crazy. I am really hoping this is the time stays like this.

Son in Austin, Tx. mourns parents lost to murder-suicide and chronic Lyme

2010-08-17T17:53:00.000-07:00

On July 8th, police in Ocala, Florida, made a shocking discovery in a travel trailer at the side of a highway--the bodies of 48-year-old George Strobos and his 49-year-old wife Jonalyn. It turns out the couple, both suffering from advanced Lyme disease, had taken their own lives. Last night, their son, Michael Strobo, of Austin, Texas, made a series of heartfelt postings about his parents on the CALDA Facebook page. Michael subsequently gave me permission to re-post his writings here.

Michael originally wrote in eight different segments on Facebook, which Dorothy Kupcha Leland has compiled into one column here.

Part 1: Hello all, I'd like to introduce myself. My name is Michael Strobo, I am the son of the late George and Jonalyn Strobo, the couple who died in the murder-suicide at a truck stop in Florida. God bless each and every one of you (and family members too :) I didn't know what was going on when mom first startedshowing signs [of Lyme]-everything snowballed so fast I couldn't keep up. She was hospitalized on two different occasions nearly a year apart for similar episodes of delirium, psychosis, repetitious ranting, organ systems shutting down...The second ER visit the sharp doc diagnosed her with advanced LD. I thought she was partly a hypochondriac when she began reading and searching and reading and reading and talking about all this information which was all alien to me...then she got to taking some antibiotics regimen set forth by someone who wasn't even an MD.

Part 2: .......all at once she was displaying physical and mental effects of a person twice her age. I don't guess she ever recovered back to "normal". Soon my dad was experimenting with antibiotics and claimed Herxheimer's reactions in the joints....mom was laid off for something unrelated (i.e. the economy) Thank God unemployment kicked in. Some time in there was really when The Unknown set in... Who's gonna treat it? Who's gonna say for sure what it is? How long will it take? How much will it cost? How soon can she go back to work? Is it all in her (their) head??? I'm sure everyone can relate. I feel guilty now, but back then I just didn't know what to do or think. And I'm sorry for everyone out there who has to experience it. Often times no matter how difficult something is to deal with, it's a whole lot easier to deal with it if YOU KNOW YOUR ENEMY!! Well as I stated there were a lot of Unknowns.

Part 3: For whatever reason, I believe partially it was the inability to prescribe long term abx, their answers were not here in TX. The last time I saw them well (all relative) was at the end of last August as they headed for Florida. The next ten months was filled with chasing rent houses, numerous doctors; so many... I couldn't keep up with what city they were in or the doctors' names... My mom's unemployment got extended a couple of times, which helped a little, but then one day it ran out-soon after her insurance ran out as well. Well this certainly came at a bad time. For months they had slowly been selling off possessions and draining their savings accounts. For almost two months, they lived in a cargo trailer. 5' x 10'. I'm not kidding. My dad had installed a "kitchen" sink in the front of it, built bunk beds out of 2" x 2"s and they used pool floaties as cushions to sleep on.

Part 4: A neighbor pipe-fitter had cut a hole in the wall and welded a brace in which they installed an AC unit. They lived in that thing at RV parks for two months. I called it the RT. It wasn't a recreational vehicle (RV) it was a recreational trailer. They used it as "home" until they purchased a travel trailer from a guy at a gas station somewhere. Well that pretty much killed their funds. They did return once for one week in April, I was working as a full-time firefighter and attending a full time paramedic program so my time was limited. They looked bad. They both had lost a lot of weight and looked as if they had aged ten years in ten months. We had dinner together one night--I brought pizza. And in the same old nature of my parents, they demanded they pay for their share. I didn't let them though, and I'll never forget how they always tried to pay for things like that :) One day we took a several hour drive to pick up a piece of material I had bought for my property.

Part 5: That was the last time I spent any length of time with them. My mom slept in the back seat of the truck almost the whole way there and back. It was heart wrenching to see them in that condition. Words can't explain. Again, y'all know. Well they headed back to Florida. And in the next few months I received a few phone calls, emails or texts out of despair. That was not uncommon. I am the only remaining child--my brother died ten years ago from cancer. I helped out a little financially. Mostly I tried to give them hope, give them something to look forward to. Back in December I had purchased 20 acres. The deciding factor for me to buy it was that I was allowed per covenant restrictions to build a main residence and a smaller, second residence on the property. That was going to be where my parents were going to live when they got through this blasted disease.

Part 6: The best thing was that there is a flat spot conducive for a large garden, and the way I had it all laid out, my dad and mom would get to drive past the existing windmill on their way to and from their house. Something I thought was to be very special for my dad considering all the stories he had of climbing every windmill they passed growing up as a kid in TX, AZ, and LA. I also promised to give them my .243 caliber hunting rifle as a gift when they got better and could move back home. The .243 is a great caliber for TX Hill Country whitetail deer, and small enough my mom would be able to shoot it with ease. Everytime I talked with them I tried to drive them into The Word. Studying the Word of God. I know from tough times in life, albeit on a much smaller scale, that the best source of peace and hope in this life comes only from God. We have a Creator. A faithful, loving, compassionate Father. I reminded them constantly of this.

Part 7: My dad sent me a text once, that said I was right. He felt much more peaceful after having listened to a study of Pastor Murray's. (Pastor Arnold Murrayof The Shepherd's Chapel). In the last hand-written letter my mom mailed to me she said my dad had been sleeping better since she had been reading The Bible to him before bed. This is something I encourage everybody to do. They were in so much pain. Constantly. Emotionally, physically. They had lost everything, including their health. They were living completely on the road. Two trucks and two trailers, one to live in and one to store their last possessions. With no money and no answers. No plan, no outlook. Nothing but grey areas, stress, loss of mental function, constant nausea and analgesic patches........Well I did get a phone call the day they died. Those details are mine. I don't know what to say now. I'm sorry there are so many people affected by such a terrible, stealthy enemy.

Part 8: Please stay strong if you are affected, please support those around you who are. Everybody feel free to contact me anytime you would like. If I can be of help to anyone trying to get something accomplished politically, let me know. I don't know what else to say. Thank you all for your thoughts and words and prayers. My parents were special people. I spread most of their ashes near where we had spread my brother's ashes 10 years ago. I kept a little of all 3 of them though. I'm going to spread the rest of it out at my property under that windmill where their ashes can turn back to dust together. I know their souls have already gone back to be with God who gave them. I know I'll rejoin them one day. Thank you all for taking the time to read this. God bless you, and again, if you need anything, don't be a stranger!

Contact blogger Dorothy Kupcha Leland at dleland@lymedisease.org.

2010-08-10T22:27:00.000-07:00

During my killer migraine that lasted from Sun to Tuesday morning finally being broken by an anxiety drug of all things. Monday night my son asked for secret fun night. This just consists of him starting out as if he is going to bed and coming up instead so as not to piss off 5 yr old. We watch old Malcolm in the Middle reruns, laugh at them, and we might have a snack, feeling so decadent to eat so late at night. I sometimes work on the computer, without 5 yr old interrupting to ask how tall the sky is, then asking to so see infinite or God, or why don't snakes have legs, so I can get a lot done. 9 yr old always wants to hold my hand during the show, so if I am on the computer I have to type with one hand. But I know all the episodes anyway so can do both easily. Then he gets to sleep in my room, on the floor in a sleeping bag or on the lounge next to the window. I always enjoy these but last night I was dying last night with pain, bag of ice on head and watching tv with my sunglasses on. Then nausea. Got us both a sprite- another treat, But I had made my decision to do this even though I was so sick because he wanted time with me so much. I have been to DC once a month since Jan '10 and I sleep a lot on certain days and I think time with a sick mom is better than no time at all. He always wants to help me on the nights I am in pain and I let him in little way. I ask him for a few things and he brings them.

Shout Out

2010-08-10T21:27:00.000-07:00

I had a killer migraine Sunday and Monday. I have no idea what it is from as I was not on any treatment. Maxalt wouldn't touch it. Ativan finally kicked it Tuesday morning.

In the middle of the headache, with the bag of ice I had permanently attached on my head all day, I took it off for a wonderful dinner with some wonderful family friends to celebrate 35 years of marriage on Sunday. They have been so wonderful to us we have really appreciated them. The young girl was our nanny for many years til she got her degree and had her own family. Our son was ringbearer in her wedding. Steve, the father in law of that nanny whom we first met this family (her family) through, is a regular reader of the blog and wanted to see the event mentioned.
Probably wants details in here too- it was at Ruth's Chris Steakhouse. All 3 of the grandchildren came and the other one on the way showed up too. Our two children, their "surrogate grandchildren" were there also and all 5 of them ran around in the room that was reserved and had a great time!

Steve deserves a shout out. Hey there Steve and Cindy! We love yall!
Best to all,
Susan
PS. Steve, where was your movie camera at the event?!

Home from latest DC Doc trip

2010-08-10T21:09:00.000-07:00

I know that most people get their PICC lines out after the (more or less) regular type and duration of treatment I have had. But the doctor recommended another round. This time with two I've had before but not together. Not sure how many more IV treatments and didn't ask. I know that he is looking at each one individually to see how I respond on and after each round. This particular round as I have researched targets Lyme and coinfections and the bursting of any bacterial cell walls. One of the meds I will be on is also used for syphilis, meningitis, and it must also treat cancer in some way. It's on the "Livestong" website, Lance Armstrong's website.
On the days I am off treatment I am using a protocol of high vitamin C taken thru the picc line. It's not the "Salt C" protocol. Just a really high dose. 25 grams. The people that found success in this and wrote online about it used 100 grams. Wikipedia says: The uses and recommended daily intake of vitamin C are matters of on-going debate, with RDI ranging from 45 to 95 mg/day. Proponents of megadosages propose from 200 mg to more than 2000 mg/day.
All of those from Wikipedia is in mgs, my script is for 25 grams and my father in law read it should be 100 grams. So we are giving it a try. The dose tonight didn't make me feel better. As a matter of fact, it feels like a regular dose of antibiotics. Wonder if I will herx much, I hope not.
Here's a new lyme blog I found. She is with Dr J too. http://lymeandtheco-infections.blogspot.com

August 3, 2010

2010-08-02T22:09:00.000-07:00

My energy is better today. On Saturday while visiting in-laws out of town, I had to take 3 naps during the day. We were having fun and I hated to miss out but the pain and fatigue was so bad and evident I was encouraged to go to bed. Couldn't help finish a sewing project, couldn't help with dinner etc.
Today the energy was good, probably because I slept til 1pm after getting up for an hour to get 5 yr old off to camp.

Getting better every day

2010-07-29T20:21:00.002-07:00

I am finally getting my strength and energy back from that last dose of Tigecycline and can go out to Dr's appts and even short errands.
However the pain in my feet and legs is still bad. Walking short distances around the house and even driving is painful. I have someone else drive me as much as possible.

2010-07-27T21:35:00.000-07:00

Today has been the best day yet. Yes I'm still in the wheelchair and can't leave the house (don't even want to - I'm so different than what I used to be)! Depressing. Yes, I couldn't sleep til 330 am last night (that's with a prescrip sleep aid) and I wasn't up til 11am and back to sleep 1pm to 7pm but tonight I was able to take a bath, change clothes and clean up a little and now set up a ringer without having to lie down in complete exhaustion and weakness. Yesterday I didn't go to sleep til 330 again. Up at 130pm, back to sleep at 2pm and not up til 7. Weird to sleep all day. Makes you feel like a loser when you have kids that need you. Even though I have a nanny. A few days after dosing I was so weak I couldn't even hold a book in my lap to read. I set it up with blankets instead. I would have had my mother come to help me with this particular dose, eating/bathing etc. but by the time I needed her, it was too late. The nanny helped me with almost everything anyway- God bless her.

I just got up to set up an IV ringer. They want it at a fast drip. Makes me feel bad- it washes the bacteria out and brings mild symptoms. I do one everyday that I don't take antibiotics. I know ID docs ( who I don's see) think that what I am experiencing is "post lyme syndrome" and that after a month on antib, all the bacteria are killed and what's left over is the lasting damage the Lyme has done. But that's not true. You have to be on abx for a long time and people get better very slowly when you're in late stage like me. The ringer is to detox or to put it frankly to flush out whatever bacteria I have killed. Not flushing them out is what makes people so sick. They give off bad toxins when they die.

Most people have no idea what Lyme even is. It used to be uncommon but I think it's going to get more common. But a few people here in this small community (we're in the hills with lots of deer) - a few (maybe about 5 people) have been bitten and have called me asking what to do and I have helped them. Also TWO of a facebook friend friends have posted about how they dont' know what's wrong with them or what they have and have been to a bunch of doctors who can't help them but they have symptoms of Lyme and don't know it.

(My old doctor used to say "when it doesn't make sense think tick born infection".)

I emailed my frind right away and she doesn't understand the gravity of the situation understandably but is going to tell them to look into it. I hope these posts help some people.

2010-07-26T17:37:00.000-07:00

Got my other wheelchair and my walker back. Worried for nothing.

I am learning more and more. Being in constant pain drains adrenals as they are constantly in 'flight or fight' mode, excreting much cortisol and eventually not working at all. The endocrine system gets thrown off balance and hormones, thyroid, immune system - all can be compromised. Then the sympathetic nervous system kicks in and vision problems, dizziness , etc can start to occur. Also bladder problems, memory problems and sleep disturbances. (i couldn't sleep til 3:30 last night and that's with a prescription sleep aid.) Lyme cause all these things or can make them worse but it not always an active Lyme infection that is the culprit. After you get lyme under control, it is important to address the damage left in its wake and start working on rebuilding your bodies systems. I need to work on the autoimmune part. My body thinks the nerves in my feet and calves are an enemy so they have been attacking it for two years. I am back to the wheelchair. I am sitting in it right now. I have got to learn more to figure out how to get out of this part of it. It's going to be hard. But I've had to figure out everything else about this disease on my own. (God bless the internet.) Doctors are best at shrugging. I am the only one that can figure this autoimmune thing out and heal it. Lots more work to do. I am just really exhausted.

2010-07-26T16:38:00.000-07:00

Some neighbors called and said the wife has a herniated disc and could they borrow my wheelchair and any crutches I had.
From the not asking if I was still using these things, I guess they had seen me on my feet recently on the front porch or getting in the car or something and like everyone else figured it was like every other illness in that the progress looks like a diagonal line going up on a graph, and was well in swing.

As the lymies know, progress can go very forwards and very backwards. At this time I am on the back end of the lyme recovery deal-that-I-can't-refuse and am in the wheelchair a lot and use the walker every time I'm alone and out of the house.

But I didn't tell the neighbor that.

What I did tell him was "sure and did he want the walker too?' like an idiot. Giving it to him though felt so good to be in a position to help someone else for a change. I even gave him different bags of tea for a few different ailments she might also be experiencing.
Thank goodness I had two wheelchairs so I still have one. I can ask the husband to put it in the car for me the night before if I am able to drive and have to drive somewhere the next day. If I remember. I wouldn't have given my only one away for sure I know.

But I'm so stupid. Now I have to figure out a way to get the walker back. Unless I want to pay another $119 plus tax.
Hopefully no one who reads this and figures out who they are gives away my situation. Mums the word, ok?

2010-07-26T00:13:00.001-07:00

New knee pads

2010-07-23T22:29:00.000-07:00

Got new knee pads last week. The thick volleyball kind. Very helpful on hardwood floors, of which we have a lot of. I don't have a wheelchair for downstairs right now so when I put the kids to bed, which is almost every night, I crawl. This is only when the (foot/leg nerve) pain is so bad I can't take anymore, (any kind of weight on them makes it worse) which was every day for a few weeks there. The kids are used to it and it's never seemed to bother them.

Symptoms to look for in a child

2010-07-23T16:48:00.001-07:00

In addition, Lyme disease can be passed through sexual contact to partners and also through the placenta to children.

July 23, 2010

2010-07-23T16:15:00.000-07:00

Still trying to recover from last dose of Tigecycline. After that last post last night I was so ill I turned off everything and sat in the dark. Horrible nausea and headache. Headache so bad the pillow was too hard and couldn't recline cause needed head straight up. So I was sitting up and laying back down for awhile til finally fell asleep. I had done too much. Had taken a bath, changed bedspread and wrote a post. But I never know what's "too much" til it's too late.
Today is better after I slept in til 11am. I made myself quit feeling like a slacker and let myself sleep late and it made all the difference in the way I felt when I woke up- so much better.
I did do too much again though. But it's not killing me the way it would have yesterday. Had to go to a thing for parents to see what 9 yr old did in camp. I promised to go but it was a bad promise. Fatigue from being in car and chatting/laughing. I didn't even drive. I was in the wheelchair not for pain but for fatigue. I was pushed the whole time by nanny and had to wear sunglasses. Couldn't really hold my head up so leaned on five yr old's head who was sitting in my lap and no one knew the difference. Kept eyes closed to rest for most of it so could see son's part. Didn't have to see people staring at me today because could only keep my eyes level at people's waists. So tired again so will rest.

Pictures of me without my knowing again

2010-07-22T22:50:00.000-07:00

Bask in my beauty below.

Taken a few days ago by five yr old when I wasn't so sick I could use the computer. It gives me a horrible headache right now. Plus I have been so tired/weak and haven't been able to organize my thoughts til now.

Just had to go dry heave again. Need to stay off this thing and sit in the dark awhile. Maybe get some sleep. Wow. My head is in so much pain.

July 22nd, 2010

2010-07-22T22:45:00.000-07:00

I decided I can't do anymore of this drug. I have had four doses of the strongest IV antibiotics yet- Tigecycline. Four doses total for this and last week combined. I was supposed to have eight doses total for this and last week combined.

I am having a bad time recovering. Madison said I was in and out of consciousness/lucidity yesterday.

The last dose was Mon and it is now Thurs and I am still not recovered. I am so weak at times I cannot even hold a book up. I propped one up on blankets. I have had some good spots. I start feeling like I am getting better then I do something simple like talk on the phone or last night I went out to eat and it knocks me flat again. I have severe night sweats. Even the nausea comes back. I am trying to stay put completely in bed for a few days to make sure I recover.

My infusion nurse called and said we have overloaded my body with more than it can handle and she won't be surprised if it takes the whole two weeks to recover. It was supposed to be this way.

It takes longer and longer for me to recover after each dose of this stuff. This is my third round.

It's strange but since this started my body doesn't know when to sleep even when I'm exhausted. I don't sleep without phamaceutical help.

Hell of a headache. I use a lot of ice on my head to help pain and inflamation that causes the headache.

There's a divet in my place in the bed now.

My nanny does everything, playdates, everything. My friends, maintenance guys etc. have her cell number. My good friend, Chereen called here tonight. Her child was here on a playdate, I heard her on the answering machine. "Hi Madison, just checking on the kids etc..."

I was bypassed completely for the first time. It's ok right now.

July 14, 2010

2010-07-14T19:59:00.000-07:00

Meds making me feel pretty sick but I can still do a few things to help around the house and drive to appts. yay. Rarely sit anywhere, always lying down. Low grade headache always. Zofran really helps with the nausea but it just keeps coming back. Relentless.

July 13, 2010

2010-07-13T19:41:00.000-07:00

Busy day until about 3:30. Very tired. Slept 4 hrs 3:30-7:30 and still tired.

my world for now

2010-07-12T21:05:00.000-07:00

Meds from past treatments

Everyday meds

IV Detox meds

1st Dose Tigecycline this round....3-5 left this week

2010-07-12T19:34:00.000-07:00

1st day of a 2 week cycle of dosing- I am jerking so hard every 20 seconds it's hard to type without messing up.
Head hurting. Will distract with un-procrastination. I need to get real.
"Before You buy a Mobility Scooter"... is a must read on "disabled-world.com". I remind myself I am only 45, not 85, and I am not really all that disabled and it makes me feel better.
The "Cruzin Cooler" is a cooler you sit on with wheels, a motor and a steering wheel. Swear
Here comes familiar nausea. Soon I won't be able to type, nor will I care that I am temporarily typing-disabled.
Compact for sure. 3 or 4 wheeled? Please vote.

2010-07-12T13:12:00.000-07:00

Two dead in murder-suicide had advanced Lyme disease

Video here

The bodies of George and Jonalyn Strobo were found Thursday at a Pilot station.

By Austin L. Miller
Staff writer

Published: Saturday, July 10, 2010 at 6:30 a.m.
Last Modified: Saturday, July 10, 2010 at 9:24 a.m.

In happier times, George R. Strobo and his wife Jonalyn Maureen Strobo loved crisscrossing the country in their camper.

On Thursday, deputies found the 48-year-old man and his 49-year-old wife shot to death inside a travel trailer at the Pilot Travel Center at Interstate 75 and County Road 484.

Robert Sandlin of the Marion County Sheriff's Office said Friday that the deaths were a murder-suicide.

Sandlin said investigators recovered three guns inside the trailer - two .357 handguns and a derringer.

The derringer was wrapped inside a blanket, along with the body of the couple's beloved 14-year-old Chihuahua, Dolly, who also died from a gunshot wound.

"At this point in the investigation, the only two people involved in this case are the ones we located in the trailer," said Sandlin.

He would not reveal whether any of the guns were used in the shooting.

Although an autopsy was conducted Friday on both victims, Sandlin declined to say where they were shot or elaborate on the fatal wounds.

He did say, however, that several handwritten notes were found near the bodies, and that the bodies were within close proximity to each other.

Peggy Strobo Haynes, 55, the sister of George Strobo, lives in Colorado Springs, Colo.

She spoke with the Star-Banner by phone Friday afternoon.

She said her brother and sister-in-law both were in the advanced stages of Lyme disease.

According to the Centers for Disease Control website, Lyme disease is caused by the bacterium borrelia burgdorferi and is transmitted to humans by infected ticks.

If left untreated, infection can spread to joints, the heart and nervous system.

July 9, 2010

2010-07-09T20:49:00.000-07:00

Pain bad. Not under control. If mornings are good, I can drive for errands. If not I have the babysitter drive me places during the day. But I'm in the wheelchair for those places and at home.

July 7, 2010

2010-07-07T19:47:00.000-07:00

Last night (today) I ended up falling asleep at 6AM.

This too shall pass?

2010-07-06T03:50:00.000-07:00

Haven't been to sleep yet tonight. Can't sleep. It's a lyme thing.

Last week- the week of rain and bad weather from Hurricane Alex was really tough for me. None of the pain meds were working. The rain and gray days where the pressure changes and it needs to rain but won't but threatens and hangs around anyway are really hard and even the wheelchair doesn't help. It was so bad I was in my bed several days trying to sleep away the time - it was all I could think to do because it was torture. By July fourth it was pretty good so that was good and had a fun day. Still couldn't make it to the parade though.

My faith in recovery is wavering a bit as things drag on and pain continues. 2 yr anniversary of this thing was end of May. "This too shall pass" has applied to everything in my life thus far but might just not apply here- we will see- some never get better and if i'm getting better then it is taking its time.

Monday June 28, 2010

2010-06-28T14:09:00.000-07:00

Cognitive bad. Balance bad. A few nights ago, I fell against the wall in my room. I was taking a few steps backwards to move my IV pole and tripped over the IV pole foot.
At the bank today I was moving from the walker to a chair. I was starting to sit a bit sideways in this office rolling chair which moved the arm of the chair. It rolled backwards and I fell sitting on the floor. It wasn't embarrassing. Especially when a customer came over to help, then the bank manager came hurrying out to offer something in an obvious C.Y.A. fashion.
I don't remember what it was.
Like a new pen.
These sound like plausible falls maybe to anyone. But for me it's new. I majored in dance for a year in college. I have great body control. Never fallen before like that.

June 27, 2010

2010-06-27T12:36:00.000-07:00

I try to keep this updated on what the latest is on my treatment and how I am doing.

Last week the doctor said he wanted to give me another week off. I am having so many balance and cognitive issues tells him there is still a lot of swelling.
The picc line will come out when all the IV meds are done. I am guessing Aug or Sept? I am not anxious to rush it because I want to take advantage of all the strong IV meds to blast this thing.

Foot pain has been very challenging. Burning and pin sticks all over feet and burning up the calf. He gave me some new meds to help with pain. I'm back in the wheelchair a lot of the time at home and it helps.

June 13, 2010

2010-06-13T19:17:00.000-07:00

Hi, I've been on Tygecycline for 2 weeks. I did get the nurse to dial it down the second week thank God. I did 4 instead of 6. Tough treatment as it supposedly gets all the forms at once. But it's supposed to be the best so who am I to complain?

Here's a more info than you probably want.

B. burgdorferi spirochetes take up residence in tissues of people bitten by ticks that carry the bacteria in their guts and inject them via saliva. The spirochetes’ most familiar form is an agile, spiral-shaped swimmer associated with acute symptoms of Lyme disease and rapid reproduction of the bacteria. But as Margulis explains, these bacteria can “go underground” and persist for years by entering a self-protective, quiescent stage known as a spirochete round-body (RB) propagule. In this state, they better resist what scientists call “unfavorable environmental conditions” such as starvation, desiccation and exposure to antibiotics such as penicillin and deoxycillin. Chronic Lyme disease symptoms correlate with the continuous presence of reversible RB propagules in patients’ moist tissues.

What the Brorsons’ work shows is that, unlike other antibiotics, Tygecycline administered at the correct dosage and timing destroys the bacterium even when it has protected itself in this quiescent stage. Other antibiotics, if they do anything at all, simply cause B. burgdorferi to enter its RB propagule state and wait out the treatment. “Tigecycline is, so far, the only known antibiotic that destroys the Lyme disease spirochete in both the growing and the quiescent RB stages of its life history” Margulis notes.

2010-06-04T23:03:00.001-07:00

I don't have diabetic peripheral neuropathy but this ad just seemed to illustrate the pain of peripheral neuropathy so well. The little pins and the fire are accurate but crack me up as an illustration.

June 4, 2010

2010-06-04T21:57:00.000-07:00

A shout out to Marlee. Thanks for keeping up with me and gently bugging me to keep my blog updated. Here are two nice long posts for you.

I keep trying to "advise God" here in this situation that I could do a lot more to help this world if I were well instead of spending so much time fighting a lengthy ridiculously hard to get rid of disease, but he keeps answering no. However, he's brought me this far, and he will walk me through to the end. Mysterious ways.

I did go to DC the end of May. I was discouraged when I went up because the foot and leg pain was still hard to manage. "Severe peripheral neuropathy" is what Dr J said and last time had said the damage was more extensive than he had originally thought. But he said he was encouraged by the way I had been able to handle all the medications. Especially that last round of Tigecycline.

Three of my online friends who go to Dr J. were on Tigecycline all had repeated vomiting and two of them told me they were ready to go ahead and die. One lives in the UK and travels to the US just for treatment. I thought I was so *smart* because the first round was pretty easy compared to my friends.

This time I was wrong. The boys went out of town for three days and I was alone. Looking forward to this for awhile. Was going to be able to finish thoughts and do some art projects and be quiet as long as I wanted and not talk if I didn't want to. But the herx came on so hard. In bed from Tues til Fri afternoon. Lots of bed sweating. Fixing food, bathing, letting dog out and feeding him took a lot of mental cheerleading before I could get up to do it. But I did it and the dog only missed one meal on the last day. I didn't have the energy to call anyone and explain what I needed to them. (Stephanie, thanks for checking on me the first night when I thought I was so smart and not herxing badly.)

I wish I could describe it but I really can't. In addition to shaking, mental fog, depression/anxiety, you feel so awful. Like just before the flu when you are going to vomit for the first time and you just want to die and you're so weak you can barely make it to the bathroom. You feel too bad to watch TV or read. All you can do curl in a ball and stare at the covers and pray to go to sleep. I guess its like that.

Also I never am self aware enough to know I have the depression and anxiety til it's over. Depression and anxiety are also symptoms of Lyme as is insomnia.

Winston Churchill said "It's hard to fight an enemy that has outposts in your head."

I remember our housekeeper letting herself in to clean and I was so out of it, I couldn't even open my eyes. She vacuumed in the room and everything. Other than the food and the dog, I was sort of glad I was alone. I slept off and on for days in this one space.

One night I took a good dose of prescription sleeping pills and took my Tige and the three other antibiotics. I knew I was going to feel badly so I wanted to make sure I slept through it. But the nausea was so bad it actually woke me up with horrible dry heaves and I jumped out of bed and grabbed the nearest trash can. I went right back to sleep though.

You have to get all the forms though at once and it will make you sick. It's all a means to an end. It is an intelligent bacteria. It morphs into forms the antibiotics can't reach when it senses the presence of them. This week: IV Tigecycline, Oral Mepron, Flagyl, Artemisinin, and Septra. I'm just like a senior using my meds as a topic of conversation.

It's hard to imagine it was 2 yrs ago the neuropathic foot pain started and I was googling like crazy trying to find a cause. I thought I was insane because I couldn't find a cause so I thought it was my fault.

I emailed the nurse today to dial down the treatment some so I wouldn't herx so bad. She did and I was so grateful. I wish I knew where I got this bacteria. I am stumped. Onward through the maze.

May 20-23

2010-05-25T22:07:00.000-07:00

D is looking fwd to his Vegas trip the 20th 23rd and I am too.
I am looking forward to a busy and fun friday-
10am Pump It Up - inflatable place for 5 yr old's end of preschool party
11:30 PTO (PTA) lunch
2pm 5 yr old's well check
5:45 9 yr old's baseball with family and end of season party
7 Formal graduation dinner for one of my favorite nannies

I got places for both kids to spend the night since I was going to be at the grad dinner. Easier to do that sometimes than get a sitter. Got a family friend and former minor league baseball player to take 9 yr old to party/game- then to the spend the night family. I was looking forward to C's grad dinner. But thurs night my body was aching so badly I thought it was a bad herx. Then I got a fever. I slept through a lot of it and when I woke up sometime on Fri I had 104.5 temp.
No one was home but D kept checking on me from Vegas. I knew if I just took some fever reducer med it would come down and run it's course. But D was freaked when I told him the 104.5. He got the home house call doctors (White Glove- wonderful service by the way!) to come. I told him I was just going to take fever reducer and fluids but he said "You're delirious and you are unable to make decisions!" Whatever. I guess the front door was unlocked or something. I just remember the nurse was there. She thought it was a picc line infection at the heart. I knew it wasn't because I wasn't having any pain or any weird symptoms. She was nice but a little pushy and said I was dehydrated I should have already been to the ER. I showed her my fever was down to 100.5 but she said that wasn't a good enough drop on fever reducer.
Now I am not against medical attn when you need it but the ER is rarely a good idea to get this. When I go I vow never to go again, with my kids or alone. I kind of think the only way to go to the ER is on a stretcher. Faster service I imagine. I did not have the strength to go sit at all and in a freezing room on some hard chairs for God knows how many hours, picking up more pathogens and spreading mine just to have them say "OK you're fevers down..here are your lawsuit avoiding discharge instructions that will be complete common sense and will take the next hour to read the whole thing to you even though you can read." I was just feeling desperate to sleep.

When she started talking ER I was thinking "Well what the hell are you here for? Isn't this service for people who are too sick for the ER"but I didn't say it. I just said that I didn't need to go to the ER. She called D and turned away from me and told D that I was out of it and "not with the program". She wanted my white count checked. Stephanie up the street as usual dropped everything for me and took me to go get blood drawn. My white count wasn't elevated so I didn't have to go to the ER. Slept a lot. Fever came down as I expected. Crisis avoided. D came home a day early "in case you were gonna die". Big thanks to Anne D for taking the initiative and just taking the kids away to her house for a long time. Especially since nanny didn't show that day.

Tuesday May 18, 2010

2010-05-18T19:23:00.000-07:00

Dad's bday on coast was fun. Lots of kids. Lots of people. Nobody told me I looked good. Which means there are no liars in my family. Also no liars at church, the elementary school, preschool, or at hairdressers. Car wash, city hall, book club, or home town. Postoffice or husband's office.
Grocery store.

During the weekend, I had to join the seniors (except no other seniors did it) and close my eyes/lay head back when we were sitting talking in a group with all that I was doing -(sitting on a rock at the beach watching our kids play, sitting on the couch talking, sitting at my dad's party, sitting at the dinner table, sitting and taking pictures/movies, sitting at ice cream shop- ha ha.).
It probably looked so weird. Felt weird. Just so tired though. Sister took care of my kids doing so much with her kids too.

Now my symptoms are kind of worse than they were before treatment. But that's due to a lot of things and will change- not walking straight, weak, chills, always hot, freezing hands/ feet, cant seem to keep eyes open more than halfway. Look stoned or drunk I guess. Hope I don't get pulled over (note to self: learn alphabet backwards).
Fatigue is getting me now. Naps don't help. Tired on coffee. But end of yr stuff at school/sports is crazy and bordering on ridiculous. It's busier than Christmas. Except you don't get to shop/wrap/bake and freeze early. Trying to enjoy it because there are lots of "lasts" with kids. Husb out of town Thurs thru wkend but I have a little help calling for help with friends. (Both my sitters graduating from UT this wkend so can't help) Might have more help if I get another sitter to help me on Fri and Sat with a bribe ($20 hr). I am dosing "the hard stuff" this fri and sunday and it gets me big time with fatigue too. I am going to try to force rest as much as possible. Husb calling my "Sybil" on the emotional stuff. Funny.
Time for another trip to DC - going next Tues.
Took family/campaign pic off wall from when I was well- can't look at it anymore. Won't be that person again.

Foot Pain won't break up with me

2010-05-17T08:58:00.000-07:00

Foot pain made a reappearance when we had those hellacious storms this weekend where I was on the coast. I was holding pretty steady and did through a lot of the storms but then the storms were so relentless and came and went at night and during the day that the pain came back and hasn't left. It's sunny and beautiful. I am going to try to get it under control again and see if we can keep it going for awhile this time.

Heart

2010-05-14T06:07:00.000-07:00

This area in my chest around where my heart is aches from time to time. Its not that bad so I offhandedly told my husband last week and he got all excited and said I needed to see my heart doctor because hard antibiotic treatment can cause heart damage. It's a risk I have to take if I want to get well.

I'm having the aches again this week and I am not going to tell anyone about them this time (husband and my doctor don't read blog) because heart damage and dying is not that high on my list of things I worry about. Being in horrible pain for the rest of my life. That's what I worry about. I can't be in that pain anymore. I want to watch my children grow up really badly but I really can't be in that pain. Again, more personal than I want to be so don't tell anyone. (ha.)
Might be just from busy week. End of school is crazy. All moms know.

TYGECLINE doses AM PM(SUN)
Make appts with endocrinologist, pain doc, orthopedist, neurologist
Call Principal- re 12/10 claim
Call Aetna -pre 4/10 claims
DO BLOOD WK - THYROID
Liver function Blood work Dr J
345 Susie- Kid Clips- kids
Baseball Game W Wed 515pm Hatley WE BRING SNACK THIS WK
Check in mail for W's coach's gift

Baseball Game A on W 530pm Chavez st

Check to game for A's coach's gift
430 T's bday pty Sat- get gift
Get/find black shirt, pants, socks - W's end of yr show
Get sitter check for last Sat in mailbox
Yard man check under mat
Send money for A's end of yr gift teacher
3pm W dentist appt
4 A's 5 yr Well check
Card/ gift- D- 10 yr anniv
CN Graduation dinner 4/21/10-get gift
Mom misses detox appt tues 1pm
Mom misses pain hypntherapy appt tues 1000
Take in car - repairs
4/20 Deadline kinder placemt forms
Send in forms L treatment kids
Mom misses Pest control 8-12 Mon appt
Call in appt- thyroid doc - Mon 1015
Check to preschool re: end of yr party at inflatable place
Contact other HmRm Moms re: help end of yr 3rd grade pizza party June 1 (collect/distribute pizzas 4 classes)
Tell neighborhood kids to go home
Surprise Grampa with 4 hr trip w/ kids to hometown for 75th b-day surprise party- Gift- Grampa's bday
(you're in charge of music from 50's)

5/13/10

2010-05-13T21:02:00.000-07:00

1. I lean to left big time like a defective grocery cart when walking- sometimes bump into corners. I look like a drunk person in a skit on Saturday Night Live. Betty White walks better than I do. Gets better as the day goes on. Still stays though.

2. I wore sunglasses in my child's robot demonstration at school in class at 8am today. Just couldn't show the occasionally slowly closing eyes of the walking dead. I had forgotten about the demonstration til D reminded me. 45 mins late. Missed son's first demonstration.

3. Left side of chest aches. Some schools of thought say antibiotic therapy damages it.

4. Older son says teacher gets mad when he brings water in a plastic water bottle.

I've been married ten yrs today. "In sickness and in health..."

2010-05-13T20:25:00.001-07:00

D really wants to go to a farewell concert at Paramount. Probably a group going. Should be fun.

I want to want to go. I just don't.

Who is this person that, for the first time, doesn't want to go with friends to a concert ? If you can tell me you will get a prize. Maybe something off my 4 yr olds floor.

I was thinking about it and think people offer to help or offer understanding with diseases they have heard of or understand. If not, I feel the action of a repelling magnet in groups of people. Especially with a wheelchair or walker at a gathering.

FOOT PAIN ALMOST NONE TODAY- THANKS AGAIN, GOD!

2010-05-12T20:11:00.000-07:00

It's really hard to leave what you were

when you don't know what you're becoming.

(special thanks to 4 yr old's secret photographing techniques)