Starting Tindamax

[Daffodil]

Hi all. Just started Tindamax for Lyme 2 days ago and felt worse almost immediately. Super bad brain fog! I read that this can happen..

Anyone here take this?

Thanks!

 

[Ema]

I take it in pulses. I took Flagyl first which was a disaster so Tindamax seemed like a walk in the park. I don't really get any side effects from it anymore at all.

It's a really good antibiotic if you can tolerate it. It should work on both the spirochete and the cystic form of the Bb bacteria.

Hope you feel better soon!

 

[maryb]

May be something I have to try at some stage,. Good luck with it @Daffodil
be nice if something worked without us feeling worse though.

 

[Daffodil]

thanks a lot, guys! i did read in some forums that people pulse it, but i am supposed to take it for 3 months and without another antibiotic. sure hope this one doesn't cause diarrhea....had enough of that

interesting tidbit....before i began antibiotic treatment, i had gained a lot of weight due to not being active at all for many years - at least i thought this was the only reason - but after months of antibiotics, the weight started to drop off despite no activity. at the end of a year of antibiotics, i was back to my old pre-illness weight (from 20 yrs ago!). i thought maybe it might be cuz of the year of diarrhea but the weight stayed off long after the diarrhea stopped.

until i started tindamax 2 days ago, i was off antibiotics for a few months...and my weight started to creep back up. clearly, a big hormone component to this disease possibly affected by bacteria.

 

[Hanna]

@Daffodil , Tindamax is my next ABX in my Lyme treatment (I'll begin in 2 weeks).
But the way I am gonna take it is very different from yours : one week/month, in combo with Plaquenil and Tetralysal (the rest of the month is with combo Plaq+Tetralysal+ Azythro or Cefuroxim).

Dosage is 500 mg twice a day.

I have never taken Tindamax, but had hellish reactions to flagyl (on a 1,250 mg/day regimen) in the past. Hope, this one will be easier (especially vertigo).

How much are you taking and what is your reaction so far?

 

[Daffodil]

hi hanna. i am taking only 500 mg once a day of tindamax. i have heard horror stories about flagyl on the boards.

i think my brain fog is much worse. yesterday, i was sure it was; today, i am just more overall blah feeling.

do you think all the antibiotics have helped you?

they have helped me but not enough ...looks like this will take years and years..just been sick too long! :-/

xox

 

[Hanna]

@Daffodil ,

I am sure the ABX are helping, though there hasn't been any dramatic change yet - energy and pain level remain somehow the same - it is the first time in 16 years that I notice some improvements in my health, after worsening of the condition. This gives me hope and I think it's worth making all the efforts to do the treatment.

What I have noticed :
1. far better sleep when not herxing (instead of waking several times a night) - night of 6-7 hours sleep
2. nocturia is far better too - even non existent at times!
3. less POTS
4. less drunk-like feeling when moving (walking on a boat)
5. I have even painted four times this semester (3 years without working, steady worsening of the condition from year 1998)... I had PEM after those events (1.5 hours) but nothing like a catastrophe, not landing on the ground etc...
6. I have slightly increased my daily walks inside the house
7. racing thoughts have stopped, brain is calmer

I think too that it may take some years, but that's worth! I met some people who were like me (with a wheelchair outside etc) , and now are able to have a real life - though they still take some supps and have healthy habits, and take sometimes a course of ABX.

xoxo

 

[Daffodil]

@Daffodil ,

I am sure the ABX are helping, though there hasn't been any dramatic change yet - energy and pain level remain somehow the same - it is the first time in 16 years that I notice some improvements in my health, after worsening of the condition. This gives me hope and I think it's worth making all the efforts to do the treatment.

What I have noticed :
1. far better sleep when not herxing (instead of waking several times a night) - night of 6-7 hours sleep
2. nocturia is far better too - even non existent at times!
3. less POTS
4. less drunk-like feeling when moving (walking on a boat)
5. I have even painted four times this semester (3 years without working, steady worsening of the condition from year 1998)... I had PEM after those events (1.5 hours) but nothing like a catastrophe, not landing on the ground etc...
6. I have slightly increased my daily walks inside the house
7. racing thoughts have stopped, brain is calmer

I think too that it may take some years, but that's worth! I met some people who were like me (with a wheelchair outside etc) , and now are able to have a real life - though they still take some supps and have healthy habits, and take sometimes a course of ABX.

xoxo

Bless you for all you have been through.

I have been sick 21 yrs and at one point, could not get out of bed at all, other than to go to the bathroom. The various treatments helped enough so that now I can do the minimum necessary to care for myself (buy food, cook, etc.).

After the antibiotics, my lymphadenopathy was gone, the aching in the lymph nodes were almost gone, the intense hunger was gone, and night sweats were gone too.
xoxox

 

[justy]

@Hanna @Daffodil your posts give me hope! I have some more abx to try after the Rifmapicin caused a bad reaction and am now too scared ti try them. I am feeling so much more ill I am afraid fo what they will do to my body. Everyone keeps saying 'you must be so excited to be starting your treatment soon (oral abx and IVIG in clinic) but I am just scared.

I am starting on Clarithromycin (Biaxin) then two weeks later Doxy.

 

[Hanna]

Bless you for all you have been through.

I have been sick 21 yrs and at one point, could not get out of bed at all, other than to go to the bathroom. The various treatments helped enough so that now I can do the minimum necessary to care for myself (buy food, cook, etc.).

After the antibiotics, my lymphadenopathy was gone, the aching in the lymph nodes were almost gone, the intense hunger was gone, and night sweats were gone too.
xoxox

@Daffodil, Yes those night sweats... I forgot them too! Gone! This last winter, though there was some snow outside, I had periods when I had to change pijamas twice!

My doc says, this may be a good indication there was some babesia at work. I did a round of Riamet in July. But he wants me to take some artemisinin now in order to keep the symptoms at bay, as there is chance -if it is babesia- that one round of Riamet may not be enough for eradication.

 

[justy]

I have been having night sweats for the past 9 years (began at age 35) not sure if ive been tested for babesia - ai also have air hunger. So glad that some of your symtpoms are improving.

 

[Hanna]

@Hanna @Daffodil your posts give me hope! I have some more abx to try after the Rifmapicin caused a bad reaction and am now too scared ti try them. I am feeling so much more ill I am afraid fo what they will do to my body. Everyone keeps saying 'you must be so excited to be starting your treatment soon (oral abx and IVIG in clinic) but I am just scared.

I am starting on Clarithromycin (Biaxin) then two weeks later Doxy.

I understand you @justy 100% !
It is so scaring when you go through bad reactions to one ABX. And then you're too scared to undertake an other. I made an allergic reaction to Amoxycillin and was not enclined to put myself at risk one more time. I waited two weeks before embarking on a new drug.
Take your time, to "digest" the Rifampicin episode, in order to lessen also the level of anxiety (if I have some feeling, I am playing the russian roulette, there is chance I am gonna have some bad reaction). This is not science of course, but I feel that one has to be a "minimum" confident about beginning a new drug, in order to avoid over-reactions.

Easy to say... Not easy to do. Once again, I fully understand you, in a fortnight I'll have to begin my regular combo with addition of Bactrim, and I have to work hard in order to temper my fear (a lot of Bactrim scaring stories on the net).

But I am convinced it is worth to try, though we may have some long way (and also bad exoeriences) before we find which are the "right" drugs for us. I hope the Clarithro will help you Justy,
xoxo

 

[Hanna]

I have been having night sweats for the past 9 years (began at age 35) not sure if ive been tested for babesia - ai also have air hunger. So glad that some of your symtpoms are improving.

Testing babesia seems to be very tricky, even when it is direct observation. Some docs as mine (*), prefer simply to give to the patients who experiment babesia symptoms (among them, night sweat, tremors, air hunger, coughs) a first "blind" round and see what it does. And only then pursue with the other ABX for the rest of the "zoo".
(*) his experience told him that treating lyme, bart etc... if one hasn't treated babesia first is much more complicated. but that is one opinion. like docs, there are many...

 

[Daffodil]

KDM wanted me to be tested for babesia after I told him about the night sweats but the FISH test at Igenex was negative.

justy...sadly, nothing about this treatment is quick or painless. It is slow slow slow and you only notice major improvement after a very long time. There is no "aha" moment....but you will be better. I really do think KDM knows what is happening to us.

xox

 

[Charles555nc]

KDM wanted me to be tested for babesia after I told him about the night sweats but the FISH test at Igenex was negative.

justy...sadly, nothing about this treatment is quick or painless. It is slow slow slow and you only notice major improvement after a very long time. There is no "aha" moment....but you will be better. I really do think KDM knows what is happening to us.

xox

Told you to try tindamax! by the way you were right about the vitamin D thing, I was taking too much and had a bit of a crash. Now its about 2000-4000iu of vitamin D a day with weekends off for this guy.