About to start Lyme treatment

[Dufresne]

So far neither myself or my sister have had any extreme/acute herxheimer reactions, nothing at least that would be suggestive of a major die-off of spirochetes. Did manage to see KDM before leaving to pose the cyst question, the reason he doesn't start with a Flagyl/Tindamax type antibiotic is due to the potentially severe herx reaction, he prefers to target the extra-cellular form initially. This decision is presumably based on a lot of clinical experience so is hard to argue against, but given that we have been on Doxy for some time I am finding it difficult to justify the delay. Would be interesting to know the kind of protocols other doctors that treat late-stage Lyme are using and how they incorporate the cyst-busters.

I believe doxy is effective against intracellular bugs, provided one's immune system is not too messed up and humorally dominant. Remember doxy is bacteriostatic, and if your immune system is not able to finish the job, all you're doing is stunning the buggers. I know Dr Horowitz tends to double up on his intracellular antibiotics.

A lot of people get a significant herx using samento and, as Dr Sapi has shown, it works as well as doxy on spirochetes while still hitting cysts and such. This has been my experience as well. I don't herx at all on high-dose doxy, but samento will get me for at least a few days into a new protocol.

Incidentally, I'm a huge Radiohead fan. I've seen them several times, front row and everything, despite this shitty disease.

Abstract
A tick-borne, multisystemic disease, Lyme borreliosis caused by the spirochete Borrelia burgdorferi has grown into a major public health problem during the last 10 years. The primary treatment for chronic Lyme disease is administration of various antibiotics. However, relapse often occurs when antibiotic treatment is discontinued. One possible explanation for this is that B. burgdorferi become resistant to antibiotic treatment, by converting from their vegetative spirochete form into different round bodies and/or into biofilmlike colonies. There is an urgent need to find novel therapeutic agents that can eliminate all these different morphologies of B. burgdorferi. In this study, two herbal extracts, Samento and Banderol, as well as doxycycline (one of the primary antibiotics for Lyme disease treatment) were tested for their in vitro effectiveness on several of the different morphological forms of B. burgdorferi (spirochetes, round bodies, and biofilmlike colonies) using fluorescent, darkfield microscopic, and BacLight viability staining methods. Our results demonstrated that both herbal agents, but not doxycycline, had very significant effects on all forms of B. burgdorferi, especially when used in combination, suggesting that herbal agents could provide an effective therapeutic approach for Lyme disease patients.

 

[heapsreal]

@Dufresne I have always thought that high doses over 400mg a day of doxycycline were bacteriocidal, thats what i have read anyway?? I think this is similar with other bacteriostatic abx if the dose is increased??

 

[Dufresne]

@Dufresne I have always thought that high doses over 400mg a day of doxycycline were bacteriocidal, thats what i have read anyway?? I think this is similar with other bacteriostatic abx if the dose is increased??

I've read that as well, concerning doxycycline (400-600mg oral), which is why I've tried higher doses. I still didn't get any herx or notice much improvement. Doxy had a slight effect on my babesia, but I decided to not continue taking it for such little benefit. I suppose it could be that my borrelia is resistant to the drug. I really don't know.

 

[Hanna]

@Valentijn Well that is pretty good evidence you are in the right ball park .

So far neither myself or my sister have had any extreme/acute herxheimer reactions, nothing at least that would be suggestive of a major die-off of spirochetes. Did manage to see KDM before leaving to pose the cyst question, the reason he doesn't start with a Flagyl/Tindamax type antibiotic is due to the potentially severe herx reaction, he prefers to target the extra-cellular form initially. This decision is presumably based on a lot of clinical experience so is hard to argue against, but given that we have been on Doxy for some time I am finding it difficult to justify the delay. Would be interesting to know the kind of protocols other doctors that treat late-stage Lyme are using and how they incorporate the cyst-busters.

@Vitalic, my doc waited 3 months of ABX before giving me the cysts buster because of the severe Herx reactions. I have already taken it (Tinidazole), three times : one week on, 3 weeks off (when off, I take other ABX in combo).
I don't know if I am going to pursue this regimen, as I have developped some pain in legs (that are linked to femoral nerves according to my local doc) and it may be linked.

 

[Vitalic]

@Dufresne Interesting, I think the clinic in Belgium had pinned up on the notice board if not that exact paper certainly a similar one which was analysing the effectiveness of Samento/Banderol on the cystic form. I did hear that Grapefruit Seed Extract was effective for this purpose as well but I have not seen any evidence supporting this. You are lucky to have seen Radiohead several times, have been a fan for about thirteen years but the kind of big festivals they typically play at are not my cup of tea (especially since being ill).

@Hanna Thanks, that seems to be consistent with the advice given to me. We are concerned though that having been o n Doxy for 6 weeks prior to IV for co-infections that this might have knocked enough into cystic form to render the IV less effective. Having said that I am feeling atrocious today, barely able to open my mouth to speak - not sure if you can have a delayed reaction 3-4 days after the last infusion.

 

[Hanna]

@Vitalic I understand your question.
Same goes for me. I still don't succeed in identifying for sure the "culprit" of my present and long lasting crash if it is an herx reaction, a PEM or something else (or a combo) it may be linked to :
1. tinidazole
2. Riamet
3. PEM : I should have reduced even more my activity because of those strong drugs
4. EMF sensitivity much worse in winter, cose I am confined into my flat and can't do earthing like rest of the year (we have even snow)

 

[Vitalic]

@Hanna Agreed. Interestingly however, we just got back from our first IV infusion in Malta and whilst still in the hospital, within about 20 minutes of finishing the infusion, I experienced this wave of flu-like feeling that was analogous to the usual PEM symptoms I have had for the last 6 years, it's still present right now but not quite as acute as it was for the 1-2 hours immediately after. This was with no activity whatsoever prior to the infusion and no other contributing factors that I can see, the likelihood of an adverse reaction having done three consecutive days without issue last week seems rather remote. So this is the strongest indication so far that it may actually be having a clinical effect, almost as if having the 4 day gap has allowed more spirochetes into the bloodstream, nevertheless I remain intensely skeptical. The psychologists would probably say I have had a flight-or-fight response due to the psychological stress of being in a hospital in a foreign country that has consequently reinforced my erroneous illness beliefs.