Post Lyme Treatment with KDM

[MartinK]

Hi all! My new LTT for Lyme is positive, CD57 (NK cells) are still low and also my IFN-G.
Looks like chronic Lyme still beats me!

I go back to Disulfiram (Antabuse) treatment. First two weeks - 50 mg / daily. No side effects, only drowsiness in the afternoon.

Anyone else now in Disulfiram? How looks KDM Lyme treatment now? Mainly Disulfiram?

Cheers, Martin

 

[Cipher]

Hi all! My new LTT for Lyme is positive, CD57 (NK cells) are still low and also my IFN-G.
Looks like chronic Lyme still beats me!

I go back to Disulfiram (Antabuse) treatment. First two weeks - 50 mg / daily. No side effects, only drowsiness in the afternoon.

Anyone else now in Disulfiram? How looks KDM Lyme treatment now? Mainly Disulfiram?

Cheers, Martin

How long did you take Disulfiram previously and at what dose?

Here's some info you might find interesting (source):

Borrelia
When diagnosis is delayed, patients often experience persistent symptoms. Research into solutions has involved screening of existing drugs for activity against borrelia.
One drug identified in this process is disulfiram, a drug commonly used to address alcohol abuse. It was identified through high-throughput screening, has been found to be useful in documented case studies, and is currently in clinical trials. Patients who have tried it have had success in treating Lyme disease. However, treatment protocols are still not entirely clear. Alcohol must be avoided, both ingested and topical, and one thing that has become clear is that it is important to go low and slow in order to avoid side-effects.
If your doctor prescribes disulfiram, useful information is available at:

• https://www.lymedisease.org/disulfiram-bauer-moysa/
• http://disulfiram.net/
• https://www.treatlyme.net/guide/antabuse-disulfiram-chronic-lyme-disease-treatment
• https://www.lymedisease.org/disulfiram-kinderlehrer-2/
• https://www.facebook.com/disulfiramforlyme/
• https://www.facebook.com/groups/dsf4lyme/
• https://www.betterhealthguy.com/episode111

Doctors should be aware of potential issues with neuropathy among Lyme patients which may be averted by using enteric-coated capsules:

• https://www.researchgate.net/publication/338319151_Antabuse_for_Lyme_Disease_The_Way_Forward
• https://www.researchgate.net/public...neuropathy-for-Lyme-Disease-and-Addiction.pdf

Azlocillin has also been shown to have potential for use in future: https://www.nature.com/articles/s41598-020-59600-4
Bartonella
Methylene blue has been found effective against bartonella in high-throughput screening and early experience shows it is useful in treating persistent Bartonella. It is also active against Borrelia.
If your doctor prescribes this, more information is available at:
https://www.facebook.com/groups/2067807336861825/

HBOT (or perhaps just breathing concentrated oxygen) might also be effective against lyme.

 

[MartinK]

Hi @Cipher , HBOT was a miracle for me! Great treatment with many benefits.

Thanks a lot for info and novel in Lyme treatment. My first treatment with Disulfiram was 3 months long, I reach 250 mg before diarrhea problems started.

And I have great news now!!! Only 3 weeks on Disulfiram now on 50 mg and my CFS and inflammation is little bit better! Today I walk around my house. No bedbound for all day. Amazing Im really happy!

 

[Cipher]

@MartinK

Oh yeah!

 

[Sushi]

HBOT was a miracle for me! Great treatment with many benefits.

Maybe you could post more about your experience in a separate thread? Others are also finding help from HBOT, both from Lyme and from ME/CFS.

 

[unicorn7]

Hi @Cipher , HBOT was a miracle for me! Great treatment with many benefits.

Thanks a lot for info and novel in Lyme treatment. My first treatment with Disulfiram was 3 months long, I reach 250 mg before diarrhea problems started.

And I have great news now!!! Only 3 weeks on Disulfiram now on 50 mg and my CFS and inflammation is little bit better! Today I walk around my house. No bedbound for all day. Amazing Im really happy!

Good to hear!
I am doing very well on disulfiram as well.

 

[MartinK]

Hi all, another progress with Disulfiram!
Im still only on 50 mg/day, but some days ago I have some problems with sleep and I slept less than 8 hours at night. This always causes me PEM! In last months for 4 - 5 days...and full bedbound.
But now no problem with 6 - 7 hours of sleep, no PEM and this days I took a small bike ride around the house.

This is amazing. I think when I beat Lyme, my life will be back. Lot of testing shows that I am otherwise a very healthy person and I have already fixed many things...like SIBO or inflammation (inflammation was crazy - it seemed to me like my back burns when I lie in bed and now it's cool).

@Sushi I wrote lot of about my HBOT experience in past, but I can't find it now. I did 30 and 50 sessions in hard chamber. First time it was a miracle for me and I was able to do lot of my favorite activities for 0,5 year! Its a 2 years ago. Great times!

Martin

 

[unicorn7]

Great to hear! I have the same thing, treated my Sibo and inflammation, that made it a lot better, but the disulfiram Is making a very big difference now. I only hope the effect will stay once I stop the medication.

 

[MartinK]

@unicorn7 How long you are on DSF? Dosage? ;-)
You have problems with mycotoxins or MCAS too?

 

[unicorn7]

MCAS, yes. Mycotoxins, no. I have been on disufiram for 5 months now, went very slow and had to go back three times, because I couldn’t handle it. I have been on my full dose now for 1,5 months and I’m doing very well now.

 

[MartinK]

Hi all, how are you? Who is still on DSF? Any updates?

I was really really happy, because I've made progress in recent months, which was amazing. at the best time during November, I danced for a while and also rode my bike! Energy was better, PEMs only small, for one day, better sleep, did small yoga sessions 3x day without problems...

Now I finished 5th month on DSF, last 6 weeks I hold 350 mg/day. No side effects, liver and kidney tests are always perfect.

But what happens...
I suffered a major relapse two weeks ago :-( I add that I did not have any change in treatment, I did not add or remove anything. Absolutely not understand it!
If DSF works and Lyme is really my number one problem, there should be big improvements after such a long treatment, not such a major relapse! I don't really understand what's going on. The deterioration came from day to day. At night I woke up sweaty, felt very inflamed all over my body, and the next day I woke up worse.

During the whole DSF treatment, I also used both forms of Carnitine, NAD + and most of the time also DNRS, which I attribute to a great improvement in my sleep.

I also want to tell you that I haven't had any significant herxes all the time at DSF. My dose (350 mg/day) would probably kill someone, how strong herx reactions would be...

Now I don't know what to do :-/ I tried up to 450 mg / day this week and I don't notice anything.
I consider taking a break and doing all the blood tests to check (also new Phelix Phage), as well as all the other possible infections that may cross-react with lyme in the results.
What do you think about it? continue or not? Any opinions?
Has anyone discussed with you the possibilities of cross-reactivity in the results so that the diagnosis is not wrong?

For comparison, here are the latest test results I performed before starting the DSF:

Please, lets discuss folks!

 

[Jenc]

Wow! I decided not to go forward with DSF - but I am super interested in your progress. Sorry about the setback @MartinK

 

[Cipher]

I consider taking a break and doing all the blood tests to check (also new Phelix Phage), as well as all the other possible infections that may cross-react with lyme in the results.

Sorry to hear the relapse in symptoms. Unfortunately, the Phelix Phage test seem to have a very high false-positive rate, see this post.

Has anyone discussed with you the possibilities of cross-reactivity in the results so that the diagnosis is not wrong?

This is just me guessing, but having both positive antibodies and positive LTT for 4 different antigens would be unlikely to be a cross-reaction. Also, according to this paper covering IMD Berlin's Lyme LTT test, they couldn't find any cross-reactions:

For instance, it was only possible in individual cases to examine patients with active syphilis (n = 3) or leptospirosis infection (n = 2) for potential cross reactivity. In these few cases, there was no evidence of such cross-reactivity in the Borrelia-LTT. Allergies, autoimmune diseases and acute, persistent and latent viral infections (including HIV, EBV, CMV, VZV) have now been excluded, by further investigations, as a possible cause of false-positive reactions (unpublished data).

I suffered a major relapse two weeks ago :-( I add that I did not have any change in treatment, I did not add or remove anything. Absolutely not understand it!

It might just be a temporary infection you've gotten that will pass. But, it could be a Lyme relapse. Disulfiram is not 100 % effective unfortunately, so if your symptoms continue you might want to re-test the Lyme LTT to see if you still got an active Lyme infection. This paper found other compounds and combinations more effective than Disulfiram alone against Borrelia burgdorferi persister cells.

 

[Aubry]

Did you search for other pathologies? Sjogren, dysautonomia, mcas, dysbiosis.
My impression is people stick way too long whit a very questionable diagnosis as chronix lyme...

 

[MartinK]

@Cipher Thanks a lot for your support ;-)
Yes, I know about some possibilities in false positivity in Phelix Phage test, but in compare with LTT from IMD and TestLine Microblog Array can be very useful to verify what is happening - and see, if all the tests speak the same! ...because we all know that the diagnosis of one test is very inaccurate.

Oh, nice article from IMD Berlin! Great to know! But I want to rule it all out anyway, at the same time I want to add that for example Parvovirus B19 or Toxoplasma Gondii I have never tested.

You know a lot, thank you! May I ask you what treatment you did? What treatment helped you? I guess Lyme is, depending on how much you know about it, the main thing that caused your illness?

@Aubry Hi there! Yes yes, lot of the investigations was performed in the last 6 years! My symptoms are quite narrow - extremely fast muscle fatigue, PEMs, feelings of inflammation (I write feelings, because lot of inflammation markers are OK), I hate hot temperature, OI - some type of dysautonomia...not able to sit, stay, walk longer.
Lot of my blood tests are directly exemplary, I don't have many differences that are typical for some patients.
And my CFS started by the day after the flu like, much of the disease begins slowly, stealthily...

But really thanks you for your opinions ;-) How are you? KDM patient in past right?

 

[MartinK]

@Cipher Hi there, out of curiosity, I contacted RED labs about false positivity of Phelix Phage, here is answer:

"We do not have false positive results as we perform confirmatory sequencing for every positive-like sample."

Anyone else researched it?

 

[Judee]

So I am still with my spirochetes....

I am looking into this protocol: https://www.lymeneteurope.org/forum/viewtopic.php?f=12&t=4891&sid=ba0052a7d7e309b1235c2a4d8047b155
He's not a doctor but some type of biologist who got better himself with the protocol. He seems to back up a lot of his ideas with studies.

If DSF works and Lyme is really my number one problem, there should be big improvements after such a long treatment, not such a major relapse!

With DSF there are so many things you have to avoid. Not just the alcohol/ethanol products but anything ending with -ol, sugars, things containing nickel if you have a nickel sensititivity, etc. Is it possible you got exposed to something--even in a soap or food (flavorings) that could have caused the relapse? It seemed like you were on the right track. This seems like the best you have been, so far with this disease. Is that correct?

This doctor talks about the nickel sensitivities: https://www.karenvrchota.com/healthnews/2019/9/25/disulfiram-for-lyme-disease

 

[Aubry]

Borrelia wpcr phage test has not 1 published study peer reviewed or tested with healthy controls...

 

[aurel]

@Cipher Hi there, out of curiosity, I contacted RED labs about false positivity of Phelix Phage, here is answer:

"We do not have false positive results as we perform confirmatory sequencing for every positive-like sample."

Anyone else researched it?

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 borrelia infection without any symptoms. Teulieres said that it is possible that my symptoms come from this infection, but it is far from certain. This is consistent with the post quoted above by @Cipher and with the statement you received from redlabs.
This would mean that

• The statement "There are many false positives" is incorrect
• However, the statement "Many people who test positive are healthy" is correct -> They have the infection, but is does not harm them. This is what the presentation posted by Cipher says. In my understanding, the presentation says nothing about specificity (i.e. the proportion of false positives).

This distinction is crucial.

 

[Aubry]

They can claim what they want. I only believe controlled studies. Until then this test is totally unreliable.