About to start Lyme treatment

[Daffodil]

Sue, I am still dealing with an overtriggered immune system (MCS exploded, skin rash etc) after the Bactrim allergy, so I put aside my protocol. Otherwise, I think it works.

I have no Rife, but a "MD wave" (works with the same waves). That's a portable device that I use for general support at home. The rest, I am doing with a trained bicom naturopath (working on Lyme and Co, adjusting myself to ABX... didn't work for bactrim though).
I am very sensitive to meds and chemicals in general, and so far, I went through my 5.5 months of ABX without major problems, if I put aside two allergies : Amoxycillin and Bactrim.
I don't have any proof that the "wave thing" is helping me tolerate all the stuff I am taking, but I tend to think so. Nothing very scientific though.

Thanks, Hanna. Looks like we might be on the right track....

 

[dga5000]

Hi Vitalic

I've just come back from seeing KDM in Brussels. I asked him about the 4ME as it is so expensive. He explained that one of the main reasons for giving it was that "4ME prevents herpes viruses from re-activating." He also explained that he prescribed Lypospheric Vitamin C because it increases NK cell function by up to 300%. He explained that he prescribed Vitamin B12 at such high doses because B12 neutralizes peroxynitrate and therefore helps to promote and protect brain function.

 

[Vitalic]

@dga5000 Thanks for passing that information on. As it happens I had B12 injections for 6-8 weeks a few years back but didn't notice a difference (perhaps not surprising on its own), but that was from the local doctor and so probably not even close to the dosage KDM is asking for. As a peroxynitrate scavenger it makes sense, but I also saw an article recently suggesting it may be contraindicated (or rather, be unhelpful to the methylation cycle) for people with certain polymorphisms, I'm sure someone knows what I'm talking about. I did mention it to KDM and he dismissed it as a concern.

Looking forward to getting started, so much to take into consideration though.

 

[Daffodil]

wow. had no idea lipo-c increased NK cell function!

 

[Sushi]

He explained that one of the main reasons for giving it was that "4ME prevents herpes viruses from re-activating."

I've been injecting Nexavir (4ME) for a few years. I used to have very regular herpes simplex outbreaks but have had none since injecting Nexavir regularly. My EBV titers (the ones that shows possible reactivation) have gone down considerably as well.

Sushi

 

[Charles555nc]

Hi Vitalic

I've just come back from seeing KDM in Brussels. I asked him about the 4ME as it is so expensive. He explained that one of the main reasons for giving it was that "4ME prevents herpes viruses from re-activating." He also explained that he prescribed Lypospheric Vitamin C because it increases NK cell function by up to 300%. He explained that he prescribed Vitamin B12 at such high doses because B12 neutralizes peroxynitrate and therefore helps to promote and protect brain function.

You got a source for Lypospheric Vitamin C that increases NK cell function 300%?

 

[Aerose91]

Hi Vitalic. Due to my being convinced CFS was a viral infection (and i still have my suspicions), i spent so many years researching and pursuing those treatments.Then when I was told it might be Lyme, I was just burnt out (and had mush brain and was broke!) and didn't research at all - just decided to do what the doc says..so I don't know anything about the cyst busting part.

KDM once implied that it would be 4 years before I made significant improvements..I think I am at the 2 3/4 year mark right now. I am over 40 and have had the disease so long, I maybe should not expect huge improvements, but I still do hope. I haven't come out and asked how much improvement he expects because I am afraid of the answer lol

Hi @Daffodil

This disease sucks. I'm wondering what your treatment plan from KDM is for a 4 year duration. Are you on various antibiotics for that long or was that only a specific time frame?

Hope you're doing a little better

 

[Daffodil]

Hi @Daffodil

This disease sucks. I'm wondering what your treatment plan from KDM is for a 4 year duration. Are you on various antibiotics for that long or was that only a specific time frame?

Hope you're doing a little better

hi aeros. well, first, I have to correct my last post. I think I have been on the treatment almost 2 years now - not almost 3.

it looks like the plan consists of antibiotics (both regular, IV, and herbal ones), immunoglobulin, supplements, and maybe GcMAF.

lately, the clarithromycin has been helping my brain fog a little. I just worry the diarrhea will do me in!

thanks for the kind wishes
xoxo

 

[Aerose91]

hi aeros. well, first, I have to correct my last post. I think I have been on the treatment almost 2 years now - not almost 3.

it looks like the plan consists of antibiotics (both regular, IV, and herbal ones), immunoglobulin, supplements, and maybe GcMAF.

lately, the clarithromycin has been helping my brain fog a little. I just worry the diarrhea will do me in!

thanks for the kind wishes
xoxo

Wow, so 2 years in you're still on that high of dose antibiotics huh? KDM prescribes all of them for u?

 

[Jonathan Edwards]

Hey all. So I posted recently about seeing KDM and have since got results/treatment plan back. I have a few questions but generally I'd really appreciate any advice/comments/warnings on this proposed treatment plan. I know a couple of other people here seeing KDM so would be interested to hear your progress as well.

The conclusion based on my lab work was as follows:
My IL-8 was at 7353 pg/mL (reference 0-15) which seems a little high to me. It's great to get some form of diagnosis though, as my previous thread mentioned Breakspear failed to diagnose Lyme three years ago after a positive MELISA (albeit with negative serology). I find it almost surreal that he predicted Mycoplasma after I mentioned jaw problems and it showed up on PCR.

Dear Vitalic,
You have asked for advice/comments or warnings. So even if this may not be what you want to here I think I probably should offer my thoughts. As you know there is a rule on PR that people are not supposed to give advice on medical treatment, so I will leave that alone even if others may have made some suggestions. In terms of comments, as an immnunologist I would say that the immunological assessment you have been given does not make any sense in terms of clinical immunology. It is not that as a 'conventional' immunologist I am dismissing anything unconventional. Discussion if Th1/2/17 balances is something that 'conventional' immunologists are very fond of, it is just that it is speculation based on mouse diseases that probably have nothing to do with human diseases. It is not something one would discuss in a clinical situation. I am also unsure how you have been diagnosed with borrelia infection when it is generally agreed that there are no reliable tests. As I understand it the MELISA is at the stage of a research tool rather than a clinical test.

In terms of warning I would just say that the long list of drugs you have been recommended may have side effects like allergies or alterations in gut flora with diarrhoea. I would personally be very cautious about embarking on them unless I could see there was a published trial indicating there value in my specific clinical situation. I would also worry about the cost.

 

[justy]

Hi @Vitalic - just wondering how you are getting on? have you managed to get your prescription filled in the UK? I did get mine filled after some tweaking back at Himmunitas with the script, but unfortunately I have been too ill to get going with any treatment and have now developed MCS issues with ALL drugs and supplements after attempting a fe days of Doxy - my GP is hoping this will wear off soon.

 

[WillowJ]

lately, the clarithromycin has been helping my brain fog a little. I just worry the diarrhea will do me in!

Hi, are you having this problem while on antibiotics? Please have it checked.

I hope you and everyone feel better soon.

 

[Daffodil]

Wow, so 2 years in you're still on that high of dose antibiotics huh? KDM prescribes all of them for u?

hi aerose. no i am on 2 regular oral antibiotics at a time. i will also be doing immunoglobulin with that. i could be doing GcMAF too, but its too much for me to keep track...too much stuff to take!

 

[Daffodil]

i have been noticing that the periods i go through with the most diarrhea, are the ones where my brain fog clears up the most. clearly, there is a strong gut connection to this whole thing. recently, my diarrhea has lessened and my brain fog is worse again.

 

[Vitalic]

Hey all, sorry I somehow missed the last few replies and haven't had a chance to report back.

@justy I did manage to get the prescription fulfilled by the chemist in Manchester, so thank you for your help with that. Have been to the chemist near KDM today, what a difference to the UK! Much more helpful/knowledgeable.

@Jonathan Edwards Thanks for your input, your evaluation of the immunological advice given to me is worrying, but if that is the case there is a lot of unsound advice being given in the context of ME/CFS and Lyme treatment - not that this would come as much of a surprise. This is a difficult question because we cannot base our treatment decisions purely on clinical trial data as one would prefer to do, there are no clinical trials for the treatment of late-stage Lyme since it is either insufficiently understood or rejected as a notion entirely. I consider myself to be a skeptic, which makes it extremely difficult to navigate when being bombarded by dubious remedies and treatments from all angles, it has been and continues to be a great source of concern for me. I was (and still am to an extent) enormously doubtful about the possibility of having Lyme myself, and more widely about the Lyme/ME connection that has been hypothesised, but I have now had three separate positive tests (MELISA, Immunosciences Multi-Peptide ELISA, LTT Elispot) and a partially positive Igenex Western Blot, plus low CD57, albeit with negative serology. My decision to go ahead with treatment basically boils down to "if it walks like a duck...". I recently saw a talk by a prominent (and oft-reviled) NHS doctor in the UK, Dr Richard Dryden, where he spoke about unclassified strains of Borrelia being discovered in Hampshire (where we happen to live) and some novel testing techniques that they are currently developing, which perhaps slightly increases the plausibility of the diagnosis (I can probably dig this out if anyone is interested but do not have it to hand).

I am actually in Belgium right now and my sister and I had our second ceftriaxone infusions today. I am seeing KDM tomorrow, I really want to ask about the lack of a cyst buster - having been on Doxy for a month prior to this it does seem like a glaring oversight. It is difficult to know what to expect from this process, planning and executing everything has been like a military campaign. We are yet to notice any significant changes in symptoms, which doesn't exactly increase my confidence in this being the correct diagnosis.

The cynical side of me suspects that this is probably a waste of time and money (I've sure been down that road with this illness already), and that Himmunitas wouldn't survive two minutes in any country with proper regulations. On the other hand there are so few doctors with the expertise and willingness to help people in this situation, at least ones which are not manifestly in it to exploit desperately sick people.

 

[msf]

I wouldn't dare to question Prof. Edward's on the immunology, but I would question the claim that there is no way to prove borreliosis because there aren't any reliable tests. What about the ELISA (which Vitalic tested positive on) and the Western Blot? I'm sure Prof. Edwards was speaking figuratively rather than literally, but it seems to me that a lot of these Lyme debates end up with some very extreme views being expressed on both sides (either everyone has Lyme or no one has it).

I would also question any diagnosis of Lyme, just like I would question any diagnosis, but that doesn't mean I would reject it outright as a possibility

 

[Jonathan Edwards]

I wouldn't dare to question Prof. Edward's on the immunology, but I would question the claim that there is no way to prove borreliosis because there aren't any reliable tests. What about the ELISA (which Vitalic tested positive on) and the Western Blot? I'm sure Prof. Edwards was speaking figuratively rather than literally, but it seems to me that a lot of these Lyme debates end up with some very extreme views being expressed on both sides (either everyone has Lyme or no one has it).

I have no first hand experience of Lyme tests but I assume the ELISA and Western Blot tests are methods of detecting antibodies and the detection of antibodies is in general not a reliable way to diagnose chronic infection. The presence of antibodies merely indicates that you may have had the infection in the past, or something similar, or have an immunological disease that produces antibodies erratically anyway. And antibody levels are as long as a piece of string - there is no positive and negative so the result has to be interpreted in the light of very carefully validated reference populations. If there is no culture or microscopy gold standard I am not sure how this can be done.

 

[msf]

I take your point, but that would potentially put you at odds with not just Prof. De Meirleir but also any other doctor (including those in the NHS) who diagnosed Borrelia based on a positive serology. Which I think is fine in theory, but unfortunately patients have to make difficult choices in a very uncertain area.

 

[Valentijn]

I consider myself to be a skeptic, which makes it extremely difficult to navigate when being bombarded by dubious remedies and treatments from all angles, it has been and continues to be a great source of concern for me.

I was a bit doubtful too ... but a few days after starting IV antibiotics, I developed the classic herxheimer reaction, which didn't consistently abate until the last week of the first course. And then the same experience for the second course, and more of the same during 4 months on oral antibiotics.

Those final herxheimer-free weeks of each course, and then during a three-week break while importing an antibiotic (manufactured in this country but not distributed here, ironically), were quite a revelation. I was able to think clearly, walk up and downstairs much more easily, and do a lot more around the house than I could prior to starting on antibiotics. Whatever the explanation might be, antibiotics seem to be helping me quite a bit, even though I do worse regarding OI while I'm actually on them.

And at some point, any reasonable treatment with a rational basis is worth a shot

 

[Vitalic]

@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.