My treatment for Borrelia miyamotoi

[duncan]

However, disulfiram for example have been shown to exhibit effective activity against B. burgdorferi persisters both in vitro and in vivo.

This was on mice.

Disulfiram seems to be generating a polarized response among users, much the same way dapsone did. Watercooler discussions I've seen or taken part of suggest it's particularly onerous for sufferers of neuroborreliosis, but that's anectotal, so who knows? Fallon should be wrapping up his clinical NIH study soon, so it may provide for greater insight.

 

[Hip]

From what I understand from their patent, it seems like they don't actually add phages to the blood sample, but analyze if any phages exist in the sample. It seems like they mean a high percentage of people infected with Borrelia ssp. will "acquire" the specific phage for that particular pathogen, even in the early phase. I have a hard time understanding how this is possible, but what do I know.

That's interesting.

I also know very little about the lifecycle of bacterial phages, and the routes by which bacteria acquire these phage infections.

Either the test got a massive false-positive rate, or 48 % of healthy people have a chronic, but asymptomatic borrelia infection. Either way, it seems like a positive test result doesn't tell you very much.

Very good point. That certainly seems like it is the case.

If we assume that 48% of healthy people do have a low-level asymptomatic Borrelia infection, and if we assume that those ill with chronic Lyme have maybe a higher-level Borrelia infection (or perhaps a Borrelia infection in a critical organ like the brain), then this test does not seem capable of distinguishing between the two, between an inconsequential low-level infection, and a problematic higher-level infection.

 

[aurel]

After almost 10 years I have been finally diagnosed to have Borrelia miyamotoi. My plan will include 6 weeks of I.V. antibiotics (Ceftazidim, Flagyl, Doxycycline) followed by Disulfiram. I am looking forward to see if I feel better after it. I will write updates once I start. I also read in Buhner book (2nd edition) that andrographis is effective for Borrelia miyamotoi so I may try this as well before I can start with treatment. Pray for me please.

I have recently received the same diagnosis by KDM.
Phelix phage blood test was negative. Then I was told to take Serrapeptase for 4 days and subsequently send my urine sample to redlabs. The urine test was positive for Borrelia Miyamotoi.

Explanation for negative blood and positive urine test: KDM said that immune cells in the blood may fragment the bacteriophage DNA. Therefore, it is sometimes falsely negative. This does not happen in urine, which therefore allows for a higher sensitivity.

Treatment is exactly the same as yours.

A few days ago, I talked to another patient who has just finished the 6 week IV protocol and is now moving on to the Disulfiram (DSF) protocol. She reported only mild side effects from the abx but no significant improvement so far. In her view, significant improvement should NOT be expected from the IVs but will only come over time with the DSF protocol. (well, who knows?)

I am currently in the process of getting a second opinion and will then decide whether to go forward with the treatment.

Looking forward to reading about your further progress and will report mine here.

 

[newbie_85]

I will also wait with IV protocol for a month or two because of corona situation as IV therapy is not very accessible here in my country.

It worries me a bit what Cipher posted about Phage qPCR positives in healthy group. My friend actually asked them about this and they said that this was not done by RED but by Leicester as a part of the initial setup and not their, they said they do confirmatory sequencing for all positive-like samples. Who knows, if I was a millionaire I would just ask 10 of my healthy friends to do this test and pay for it (around 3000$ in total for 10) and we would know more clear picture.

 

[aurel]

I have started the antibiotic protocol on the 16th of Nov:
doxycycline, ceftazidim, metronidazole - IV, 5 days a week, 6 weeks

So far (1.5 weeks in), only mild side effects: mild nausea and mild increase in brain fog. I am taking loads of probiotics to avoid diarrhea.
No significant positive changes so far.

I actually got my health insurance to pay for most of the treatment.

Will report when there is more to say.

@newbie_85 : regarding the validity of the test, I came to the following conclusion after extensive research and talking to a world renowned infectious disease specialist. Currently, there is insufficient scientific evidence to either support or reject (a) the validity of the test and (b) the proposed treatment. i.e. there are no peer reviewed studies that evaluate the test and there are no RCTs that evaluate this specific antibiotic protocol. Although there are RCTs that look at long term and/or combined antibiotic treatment of lyme disease, there are none that investigate this particular triple combination. Furthermore, most studies have looked at b. burgdorferi and not miyamotoi.

The same goes for the second part of the treatment (i.e. the Disulfiram protocol). Insufficient data so far, but reputable researchers (e.g. from Johns Hopkins) are currently looking into it (although seemingly only for b. burgdorferi).

So in my understanding, this is an experimental treatment without any guarantees. BUT it seems to be based on extensive clinical experience of an expert and the side effect profile is not so bad. So I decided that it is worth trying.


Cheers

 

[newbie_85]

@aurel thank you for your message, I appreciate it. Please let me know how things after a few weeks or when you can again. As for me, I haven't started it yet. I am doing now buhner protocol (Andrographis, Cat's Claw, Japanese knotweed, Sida acuta, Houttuynia, Skullcap,Isatis, green tea) with infrared sauna. It worked fine for a few weeks, then I added rizol + high dose vitamin d + added also Methyl Folate which made me feel very bad for a few days. I suspect it is methly folate that made be feel so bad. Now will go back to only herbs without rizol and methly folate.

 

[aurel]

@aurel thank you for your message, I appreciate it. Please let me know how things after a few weeks or when you can again. As for me, I haven't started it yet. I am doing now buhner protocol (Andrographis, Cat's Claw, Japanese knotweed, Sida acuta, Houttuynia, Skullcap,Isatis, green tea) with infrared sauna. It worked fine for a few weeks, then I added rizol + high dose vitamin d + added also Methyl Folate which made me feel very bad for a few days. I suspect it is methly folate that made be feel so bad. Now will go back to only herbs without rizol and methly folate.

Interesting! Did your doc recommend that as an alternative to the antibiotics or did you decide to go this route on your own? (Btw: I am assuming that your doc, like mine, is KDM, right?)

 

[newbie_85]

No he doesn't. I just started taking it because I am waiting for a bit better corona situation before I can start IV antibiotics.

 

[aurel]

Today, I completed the 6 week persister protocol (doxycycline, metronidazole, ceftazidim on every weekday).

• Never had any serious side effects - only mild ones like a little nausea, mild dizzyness, or headache.
• No die-off reactions.
• Although I have pretty good veins, I never really tolerated the venous line for more than two days in one vein. So I had to switch a lot.
• No diarrhea. I took probiotics daily.
• No improvement so far
• Since, after a little fighting, my (public) healthcare insurance paid for most of the treatment, I only had to chip in about €400 in total.

The next step is the disulfiram protocol. Let's see what happens...

BTW: I had a skype call with Louis Teulieres, one of the developers of the test. He said (perhaps unsurprisingly) that he has high confidence in the phage test and that a positive result guarantees an active infection. However, he did acknowledge that it is definitely possible for someone to have an active b. miyamotoi infection without any symptoms. He said that it is possible that my symptoms come from this infection, but it is far from certain. He seemed to agree that it is a good idea to try the treatment against b. miyamotoi, although he would have probably chosen a different antibiotic protocol.

@newbie_85 any interesting progress on your side?

 

[MartinK]

@aurel
thanks for info! hold my thumbs for you ;-)
Louis Teulieres said, which protocol would he choose?

What are your main symptoms?

 

[newbie_85]

@aurel thank for the update! Did he say anything about the study where in 25 healthy volunteers 12 showed positive (see previous page for the study)?

I wish you all the best with disulfiram protocol. Maybe monitoring liver function would be a good idea, I heard that this medicine can be very hard on liver.

I am still on herbal protocol, I feel worse then before I started. I will persist probably a few more weeks.

 

[aurel]

@MartinK - I didn't ask Teulieres for details on the protocol he would choose. I was mainly interested in what he had to say about the reliability of the test and the significance of a positive result. At least in my case (and I think in many others as well) KDM tries to not only get to the borrelia with this protocol, but also influence the microbiome at the same time. Metronidazole also kills certain gram-negative bacteria that are often overgrown in his patients. These gram-negative bacteria allegedly release LPS into the body, which causes inflammation (i.e. metabolic endotoxemia).
You can find my main symptoms in my introductory post: https://forums.phoenixrising.me/threads/introduction.81859/#post-2304736

@newbie_85 - I did not discuss this study with him. Anyways, this study seems to be an initial validation of the initial test. We do not know whether redlabs has changed it and uses a more advanced protocol and might find a lower percentage of healthy controls to be positive. My own experience as an academic researcher has told me not to focus too much on these early quantitative reports. In the absence of large trials, I am more interested in the qualitative opinion of an insider who has a deep understanding of the topic (like KDM and Teulieres) than a chunk of preliminary data. In my own field of research (which is not biomedicine), you can usually learn much more from talking to an expert, than from analyzing small preliminary studies, because the knowledge of an expert is usually a couple years ahead of what has been published (Given that it often takes multiple years to get a paper published and that not everything that is learned is published).
Thanks! Yes, KDM has told me to check liver enzymes at least once a month.
All the best with the herbs!

I am at the end of week 1 on DSF: mild nausea, sleepiness, mild joint pain, nothing exciting. The joint pain makes me hopeful - maybe herx?! Will report when there is more to say.

 

[maple]

@aurel how’s itgoing?

 

[5vforest]

@MartinK you too, how is it going?

 

[aurel]

I am in week 4. 200mg/day, target dose is 300mg/day.
mild joint pain (which I did not have before).
Liver enzymes are slightly increased, but not too much - I can continue treatment but have to monitor them.
Otherwise no significant changes.

 

[MartinK]

Hi @5vforest
now Im 1 month from DSF = body is clean from drug, just doing lot of testing for Lyme and possible cross-reactivity infections.
On list is LTT for Lyme, MicroBlot Array for Lyme, Phelix Phage for Lyme, classic WB for Lyme - wondering how the results will match!
Not know I have no antibodies for Leptospirosis and Toxoplasma Gondii, 2 possible cross-reaction infections.

I'm still struggling with big crash, now bedridden, in the meantime I'm trying Oxymatrine to stimulate IFN-g...TH1 immunity and PEA for inflammation.

When I get all my results, Im ready to try Cistus tea + Core Buhner.

About Cistus: https://klinghardtinstitute.com/lyme-disease/dr-klinghardt-biological-lyme-protocol/
https://acuintegra.com/cistus-incan...is-kill-lyme-bacteria-according-to-new-study/

@aurel hold my thumbs for you! Please, do lot of milk thistle + dandellion for livers! ;-)

 

[aurel]

Update:
I am in week 8 of my DSF treatment. This is the third week on my target dose.
Since I have stopped increasing the dose, my nausea and tiredness/sleepiness have decreased - my body seems to be getting used to the stuff.
Two weeks ago, I had an intense reaction: fever, chills, intense muscle pain for a couple of hours.

I talked to KDM today.
I told him about my slightly increased liver enzymes (AST and ALT increased, GGT normal) and my joint pain.
As expected, he said that the joint pain, as well as the reaction from two weeks ago is a die-off reaction and thus a good sign.
Liver enzymes: AST and ALT were already increased before I started DSF (This was news to me because he drew blood during my last visit to do liver enzyme tests and I hadn't received the results). This is because of infection, not because of DSF liver toxicity. GGT, which is normal in my case, is the relevant indicator for DSF liver toxicity.
He cannot predict how long I will have to take DSF. He does want to speculate how widely/deeply the borrelia have spread. It could be 2 months, it could be 10 months, whatever, we will see.
For now, he is not concerned with anything but the borrelia. He thinks that I will slowly get better on DSF

 

[Lily2021]

Hello Aurel! Hello Newbie! I have read your discussions with great interest. I am also a patient of Professor DE MEIRLEIR. I will start the 6 week treatment. It is extremely expensive (1500 euros just for the products and I have already paid 2000 euros for the analyzes). I don't understand why nothing is refunded. I wanted to know how it all worked for you. And also what to expect. I read that you then went to the DSF. Excuse me if my questions are naive, I land ... ;-) Thank you already if you have the time to answer me.

 

[aurel]

Hi Lily2021,

regarding costs:
My insurance refunded most of the triple antibiotic protocol. I don't know how it works in your country, but maybe it is worth a try. I am assuming that KDM will put you on disulfiram as well after the 6 week i.v. treatment, right? The disulfiram (DSF) protocol is not expensive - including the accompanying supplements it is about €100-200 per month. I have been a patient of KDM for a while now. When I am at his practice (roughly every 4-6 months), he usually orders tests for about €1000-1500.

regarding treatment effects:
The triple antibiosis did not have any noticeable effect on me - only mild side effects, no improvement. However, that does not mean that it was wrong to do it. According to KDM, it is just the first step. After I completed this protocol, my qpcr test was still positive.
I have now been taking DSF for 19 weeks, 14 of which I have been on the full dose. I constantly have mild die-off reactions (joint and muscle pain) but my condition has not improved yet. I will keep doing the DSF protocol at least for a couple more months, because I have hope that it will eventually help me. So the jury is still out in my case.

Let me know if you have any more questions.

Cheers
aurel

 

[Lily2021]

Thank you very much for your reply and your honest reply! I'm sorry to hear that the results are long overdue for you ... All of this is obviously very complicated. But I too am determined to do the treatment and do everything possible