LymeNet Flash: opinions, please?

This is topic opinions, please? in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/26085

Posted by comunsens (Member # 2253) on :

whoa hey folks i haven't posted here since i lost internet access awhile back; i was going to say "good to see a lot of you guys are still around" but that's kind of like saying - great! you're still sick!

my question is this: i went untreated for almost four years. in july 2002 i was prescribed flagyl-biaxin, and since then i have been on three different sets of oral antibiotics (1000flagyl-500 biaxin/flagyl-1000 zithromax / flagyl-1000cefuroxine
with each set, i see no improvement for at least a month, a lot of improvement in minor symptoms and a little improvement in major symptoms (joint pain and muscle spasms and neuro-symptoms (heavy brain stuff), and then after about 5 months i "plateau", and start to get worse again.

at that point the doctor switches the antibiotics.
now this has been going on 2 years.
as i live in Canada, there is no access to I.V. therapy for me.
i'm wondering if any of you have experienced recovery, or know of those who have, from neurological symptoms (which are really my main complaint - i can deal with the body pain quite well, but cannot get used to losing my mind) without I.V. therapy.

i mean, am i going to have to switch antibiotics for the rest of my life? (i was 26 when i contracted lyme, am 32 now) what happens when the doc. runs out of available antibiotics?
or when my gut is so screwed up i can no longer take them?

i'm taking stock, and am a little scared.
this winter was the toughest i've ever had. anxiety attacks, panic, paranoia (an outgoing gregarious performance artist suddenly cannot leave her house?!), depression. it was all i could do to not jump into the ocean.

my doc (the only doc in Canada standing up for Lyme sufferers) doesn't really give me any idea of "how long" this could take, or if i should go through re-training in order to learn another profession that doesn't depend on my (previously sharp) intelligence....

agh. a wee bit down i think we are.
without I.V., - and i know this is a bit heavy question - what do you think my chances of recovery from neuro symptoms?...

sparkes.

Posted by breathwork (Member # 567) on :

Hi Sparkles....

Welcome back..or sorry that you need to be back!

Sounds to me like a coinfection may be the culprit. Babesia can keep one from getting better with lyme...I was on IV Rocephin for nine months then plateaued...Right about that time they discovered the babesia WA1 strain and I was tested for it...my titres were off the charts.

Has your doc tested for all the coinfections? Most of the LLMD's in No. CA are of the impression that babesia is not always caught by blood work...that there are strains that we don't know or test for yet....They see if the clinical picture fits babesia coinfection and treat accordingly.

I would ask you doc if he is willing to entertain this idea...

I'm sorry that you have had to find your way back to us!
Carol Ann

Posted by mjbucuk (Member # 843) on :

have you tried minocycline?

I know you don't want to hear about another antibiotic... but my son first got sick around '98 he was very sick for a few years then good for a few, and has just had a relaspe. never went off antibiotics completely... he has babesia also.

were you checked for co-infections?

Posted by David95928 (Member # 3521) on :

It's my impression that Bicillin/ Extencilline are available to people living in Canada. In my opinion, it's great stuff. Research what people her have ahd to say about it.
David

Posted by minoucat (Member # 5175) on :

I have a similar history. It now appears that babesia has been at the bottom of it, and in addition to causing it's own problems has been a safe haven for the spirochete. Looks like the other coinfections were inadvertently treated along the way, although the LLMD is still concerned about bartonella.

Extreme fatigue, anxiety, sweats, insomnia, and major brain fog were my main issues. They seem to be clearing up with the babesia tx, which is all oral meds (mepron/zith), plus IM penicillin shots for the LD, with supplements and detox thrown in.

All the best. I do so hope that you'll be posting the date and venue of your next performance soon! Total empathy with the winter thing -- if you're a creature of light and warmth, it can be a major drag to deal with when you're already sick.

Posted by comunsens (Member # 2253) on :

thanks guys - i've heard good reports about minocyline, Bowen test did not find Babesia in my blood, although i have the night sweats fevers, digestive problems, gastro attacks that might suggest Babs - although the antibiotics have slighly diminished most of those symptoms, except the sweats and the psych. symptoms. Ketek? this one is new i think and potential not covered by prov. health care....but yes, will ask doc about it, thanks.....
sparkes....

Posted by KrisKraft (Member # 4329) on :

I second the opinion that you might have a babesia coinfection. The night sweats are a big clue.

I had 2 negative Babesia tests until I took 2 two-week courses of Tequin, a Cipro drug which my MD believes has some antibabesial activity. Then I had a positive titer on an antibody test.

It's important to get the antibody test, and not the FISH or PCR tests, because the latter two tests are very specific for WA-1 and Microti, only two of the over 100 strains of Babesia. According to Igenex, antibody tests are more likely to show positive to the other strains.

--Kris

Posted by crmc (Member # 4207) on :

My brain fog/memory & concentration problems and alot of other neuro symptoms got much, much better after I was treated for Babesia.

No more night sweats or low-grade fevers either. and headaches are not as severe now.

I tested positive thru Bowen for Babesia, but like others said, tests are not always reliable.

Posted by danq (Member # 2126) on :

Hey there, uncommon one... good to hear from you - except I don't like the message.

Only you know yourself well enough to tell, but the possibility of Babesia looks strong from here. I, too, tested negative for it - from Igenex. But when I self-treated with Artemisinin it made a big difference for me.

The best known source for Artemisinin is Nutricology
It's not too expensive - about $35 does it I think.

The proper dosing is a little hard to find, but I think I collated enough good info to have it down - of course, I'm not a doctor but if you email me I'll go find that file and tell you what I've figured out.

Wish I could jump up there to where you are and give you a big smile! this here will have to do...

oh, and
Dan

[This message has been edited by danq (edited 02 July 2004).]

Posted by on :