abx and lyme

[Guest guest]

Thank you, .

How long did it take for you to feel a significant difference in your health, once you started the antibiotics? Did you feel worse at first?

Is there a particular protocol that you followed?

What about candida from all those antibiotics?

Getting the lyme and co-infections test from igenex is expensive. Is it worth just doing the western blot first?

Ann

[Guest guest]

> How long did it take for you to feel a significant difference in your

> health, once you started the antibiotics? Did you feel worse at

first?

A loooong time. Started October 2004 with doxy 300 + ceftin 1000 per

day. Thought I noticed something after 6 weeks or so. Not much. I

think I stopped waking up 5-10 times a night, but that was already

improving by itself. Being able to sleep was the first great relief.

I started going to 3 classes in late Jan 2005, a few miles from my

parents house, and could barely do it, had to lie down after lecture,

missed about 1/2 of lectures. Trying to do bio and chem labs was

hilariously difficult, I could barely stand and my concentration was

trash. I could still barely drive. Was on antibabesials then. Not

feeling much improved, maybe 25%. Still researching suicide methods.

Started hitting babesia with a few days of B-artemether (DANGER:

babesia is not malaria, there can be important biological differences,

so saftey and efficacy of this treatment are unknown in babesiosis,

and it is NOT artemsinin). Then the " traditional " mepron + zith +

artemisinin for about 4 months. I took doxy too some of that time,

after evaluating for myself whether that might be a bad idea. Some say

it may react with mepron but I couldnt find any facts.

During that time I slowly gained significant stamina, but didnt feel

much better. I dont know what microbe this was a function of. I

probably didnt have babesia; WB was equivocal but FISH was negative.

Unless they messed up the FISH, it should be extremely sensitive.

Eventually (spring) I could go to class just fine most days. But I

still felt like I had a hangover all the time... like complete crap,

still way too depressed to talk to old healthy friends even on a

computer. Could walk 1.5 miles all the time and at times 4.

Then in May I was like, what I'll do here is do tinidazole. This

turned out to be the best drug for me. Did zith + doxy + tini for a

while. At this point I needed to start antidepressants to be able to

move back to UVA for summer classes, cause I was too depressed to cook

for myself very much. ADs didnt help lastingly but I tried like 5

different ones thru mid August. Progress during that time (tini 2 g +

doxy 400 daily) is unclear because I sustained heavy side effects from

ADs during treatment - real heavy. This was hard to figure out because

the AD withdrawal effects were the safe as the side effects. But by

the time I quit them my depression/malaise was waning. Then 2 weeks

later in September it seemed like I felt fine most of the time. One

day I just ran like 200 yards down the street and the next week I

started running for real, at first I felt pretty heavy and crapped out

after a mile. Later it felt more normal to be exercising, but still

not quite.

All in all, it always took about 2-3 months to see a hefty difference.

Every few months Id be like, damn, I aint having fun, but things

are " easy. "

> What about candida from all those antibiotics?

Check. Plenty of it on my tongue. Not very responsive to heavy,

extended nystatin us last time I tried. Random increases and decreases

of whats on my tongue (about 3 fold) do not correlate to any symptom

fluctuations. What my gut looks like, god knows. But its not how you

look, its how you feel. Im not saying candida may not be more

seriously harmful to others than to me. I dont know.

> Getting the lyme and co-infections test from igenex is expensive. Is

it

> worth just doing the western blot first?

IGeneX is quite significantly more likely to show some reactivity than

non-specialty labs. It depends on what you want the test for. When I

got the borrelia WB I didnt have a money problem so I just sort of

went along tho the results were not very important to my ideas about

what needed to be done with me. Doctors may feel it to be obligatory

as a part of diagnosis. Almost all doctors treating CFS with heavy abx

focus on borrelia as the cause. Youd have to ask flat out, will you

treat me without a WB or not, if you want an answer. Some doctors

arent into any patient input, so you have to decide how much you want

to compromise, or youll end up giving right in. I sort of respect

doctors, after experiencing how demanding the contemporary sciences

are. And being an ILADS doctor is probably not easy at all. So its not

just a business relationship to me... but, its still my ass.

Maybe IGeneX could help you out some. I know they are aware of how it

is for our kind. Health insurance may pay for some of it, possibly

even all, if you have any. If you dont, you are going to need to

figure out the drug companies needy meds programs if you need super-

expensive drugs like ceftriaxone, mepron, or zith.

The co-infection tests are another story. There seems to be a stronger

case that they are useful, whereas I cant think of any real treatment

decision I would personally make on the basis of a lyme WB result.

I never had one single herxoid reaction, ever, except on fluconazole,

a 10 day course, a whole year ago. Youd think I would have been smart

enough to take it again, but regretfully it took me this long to get

around to it. I'll take some tomorrow. I have no clue what organism I

will be attacking with it. As long as it dies I ultimately dont give a

damn.

If you really want some heavy details of my thoughts on chosing

therapies, I wrote about it recently on this thread:

http://www.thisisms.com/modules.php?

name=Forums & file=viewtopic & t=1729 & start=0

Maybe you know this but you can google up the cancerweb medical

dictionary if you need to look up any terms.