Coartem/ Riamet for babesia - a difficult experience

[Hanna]

Thanks for the link @Dufresne . Could be linked indeed, though the guy dealt with numbness after several months of ininterrupted Tinidazole. I did only 3 pulsed courses of the drugs 91 week on, 3 weeks off). But perhaps it may be enough for me to trigger some neuropathy.

I forgot one point also. Because of the myriad of interactions with my latest drug (Riamet),I stopped all my supplements. Maybe, the absence of my daily vitamins B have exacerbated the problem. I have just resumed my B-complex now, and will see if there is some improvement.

 

[Hanna]

I finished yesterday my last pills of Riamet and I am in a bad shape. In fact, my leg muscles can't do their job properlym and I have terrrible difficulty to remain standing on my feet (and now that's not because of pots).

I had some reflection about babesia treatment and the link with mitochondrial failure.
From what I read, docs asked from patients who take mepron etc to stop all CoQ10 supplements.
If I recall correctly, one doc (sorry don't recall who) explained that the babs drugs were doing their job by attacking the CoQ10 in the mitochondries of the bugs. Therefore supplementing with CoQ10 was proscribed.

But... if taking babs drugs lead to CoQ10 depletion into the bugs mitochondries, the same phenomenon should occur within our proper mitos. And if a patient has already some mitochondrial problems (I was diagnosed by Acumen Labs via Dr Myhill), this may produce a big crash.
I don't know if this hypothesis is right. One thing I know : I am in a middle of my biggest crash since May 2014!

 

[Daffodil]

@Hanna hi..id be interested to know how you are now...and if the Coartem ended up helping..?
thank you

 

[Hanna]

@Daffodil Hi, in fact Coartem was a big help for babesia symptoms, but it took each time 4-5 months for them to appear once again. So I decided I didn't want to continue this route - as I don't see myself taking the drug twice a year (3 rounds of 3 days, with one off inbetween) without complete eradication of the problem.

After more than a year on ABX (which targeted all forms of borrelia : cellwalls/intracellular/biofilm etc) - no pulsing, I have switched to phytotherapy only.
Results are mild for the moment (but I am only on Buhner's Protocole for 2 months).

1. I see that Buhner's herbs target my babesia symptoms in the same way that Coartem did in the past (apart breathing and swallowing problems from time to time)
2. No real change in PEM, and energy levels (perhaps +10% ?)
3. Mild improvement on pain (fibro- sciatica- joints)
4. Improvement in neuro disturbances (tinnitus/hyperacusia/light sensitivity/difficulty to evaluate depth/dizziness)

I intend to follow the protocole 8-12 months and reevaluate the situation.

As we still don't have a cure (we don't know for sure what is linked to ME/ what is linked to Lyme and Co - and even which are the preferred drugs and how to take them) and docs are still searching, I am concentrating on the TERRAIN, trying to work on the detox at different levels.
I already see some positive outcome whith techniques as "odd" as "bains derivatifs" (see thread by @Asklipia ) which work on my pain in fascia in legs and help me to keep standing longer on my feet than I did before.

 

[Rlman]

@Daffodil Hi, in fact Coartem was a big help for babesia symptoms, but it took each time 4-5 months for them to appear once again. So I decided I didn't want to continue this route - as I don't see myself taking the drug twice a year (3 rounds of 3 days, with one off inbetween) without complete eradication of the problem.

After more than a year on ABX (which targeted all forms of borrelia : cellwalls/intracellular/biofilm etc) - no pulsing, I have switched to phytotherapy only.
Results are mild for the moment (but I am only on Buhner's Protocole for 2 months).

1. I see that Buhner's herbs target my babesia symptoms in the same way that Coartem did in the past (apart breathing and swallowing problems from time to time)
2. No real change in PEM, and energy levels (perhaps +10% ?)
3. Mild improvement on pain (fibro- sciatica- joints)
4. Improvement in neuro disturbances (tinnitus/hyperacusia/light sensitivity/difficulty to evaluate depth/dizziness)

I intend to follow the protocole 8-12 months and reevaluate the situation.

As we still don't have a cure (we don't know for sure what is linked to ME/ what is linked to Lyme and Co - and even which are the preferred drugs and how to take them) and docs are still searching, I am concentrating on the TERRAIN, trying to work on the detox at different levels.
I already see some positive outcome whith techniques as "odd" as "bains derivatifs" (see thread by @Asklipia ) which work on my pain in fascia in legs and help me to keep standing longer on my feet than I did before.

so your antibiotic therapy did not give you any improvements overall?

 

[Hanna]

@Rlman , I would say that ABX gave me a small improvement (+10% ?), not much.
At first, I was enthousiastic, and wanted to believe I was on the right track. But in May - after 11 month of ABX, I had a small show (I am a painter), and though I stayed on a sofa the whole opening, I had then a bad PEM that has been lasting for months (though there is some improvement lately with Buhner's herbs + diet + detox).