6 months DSF kill B. Afzelii, Garinii, Sensu S., but my CFS is still severe. B Miyamotoi cause all?

Hi all, you probably know my previous posts about helplessness in treatment due to my still progressing CFS and also about doubts whether is Lyme my main problem due to no-herxes in past atbx treatments with tetracyclines, azithromycins, benemicins, clarithromycins, ceftriaxone and more...herbal - Cowden, Buhner.

But 2 LLMDs says still - your CFS is caused by Lyme!

My last treatment was with Disulfiram and Core Buhner for 6 months (3 months from it with 375 mg DSF = target dose to my weight). There was only 2 small herxes, no big deal, liver tests perfect, no side effects.

Do you want to see the result? LEFT - before treatment, RIGHT after:

https://www.dropbox.com/s/54tn0kajizka6dl/porovnani%20LTT%20Lyme.jpg?dl=0

This seems like big success, also my CD57 are back in normal after 4 years! Now Im 2 months after treatment and my CFS is still very severe - bedbound. I can't say that the treatment helped me and I don't understand, I'm really disappointed.

Maybe here is another main problem? - B. Miyamotoi. Please, anyone else here have active Miyamotoi? And what test find it? I did Phelix Phage from REDlabs. My Phage test find active only B. Miyamotoi, no Afzelii, Garinii, Sensu Stricto.

I ask you - what are your symptoms of B. Miyamotoi? My is severe CFS - fatigue, inflammation, OI, insomnia, hard PEMs - post exertional malaise.
Anyone know someone with succesfull B. Miyamotoi treatment?

Thank youuu ;-)
Martin

Martin,

There are possible reasons. I came across several of your older posts the other night and posted something. I guess you didn’t see it. I copied and pasted here:

Tonight I was looking at old posts and somehow came across some posts you made from 2019 and earlier in 2020 about mycotoxin results. You said in another post that you didn’t have any mold problems, but I saw the MycoTox results you posted. You definitely had mycotoxins.

You have tried all sorts of heavy treatments for Lyme/coinfections without any improvements or herxing - is that right?

I saw older posts where you indicated that and everything you had addressed at that point. You also mentioned dental issues.

Mold has definitely caused the type of CFS illness you have in other people. Many of them are on a site called paradigmchange.me. Did you do an ERMI test on your house to see what kinds of mold and how much are there?

Besides mold, there are toxins from the infections. Some people need a strong binder like Cholestyramine to remove the toxins. There was a documentary about a lady in Canada with severe Lyme seizures. She responded at first to antibiotics but then got worse. After stopping antibiotics, she was given Cholestyramine, and then she improved again and recovered fully.

Another possibility is autoimmune encephalitis. There have been posts in the past by a couple of members who had severe psych symptoms and no real improvements or herxing with antibiotics or herbs after treating everything heavily for long periods. They were looking into seeing a doctor who specializes in autoimmune encephalitis. I think that’s what it was called.

Sounds like you have ME - myalgic encephalomyeltis. The other term for CFS. I just did a quick search and found this very interesting recent article about a new hypothesis related to ME. It’s on healthrising site. I believe it’s a sister site of paradigmchange.me. Here’s a link to the article. [url]https://www.healthrising.org/blog/2021/02/11/could-myalgic-encephalomyelitis-be-a-chronic-ongoing-traumatic-brain-and-spinal-cord-injury-which-is-exacerbated-by-exertion/[url]

Martin, you may barking up the wrong tree w lyme treatment if you’ve done all that w no improvement. I’ve read pretty extensively about ME/CFS since it overlaps a bit w my autonomic issues, and I don’t generally tend to think of lyme as the trigger, although it can. It tends to more often be a viral infection or a toxin like a heavy metal, mycotoxin or organophosphate that kicks it off.

I think it often comes back to glial cell inflammation. I think a toxin general aggravates these glial cells and they flip states from anti-inflammatory (m2) to inflammatory (m1). This damages nerves needed to innervate the cardiovascular processes in the heart that leads to fatigue, something dr systrom (see below) calls “pre-load failure” and has quantified using his “invasive cardiopulmonary testing” procedure. This is related to a bunch of different pro inflammatory nerve disorders (pots, SFN, etc), just a slightly different flavor

Someone else mentioned LDN, which is a great option for CFS because it regulates glial cell activity. IVIG may be helpful. Minocycline is also helpful for this since it modulates glial cells. Resveratrol in theory should help, they say. I’d also consider a binder to remove toxins like someone else mentioned. Ketogenic diet may also be helpful to lower inflammation. Mercury is notorious for driving glial cells mad, so I’d look into chelation as well.

I would look into the work of Dr David Systrom at Harvard. He works w the world renowned Annie Oaklander at Mass General. Mass General and Oaklanders department has been at the vanguard in researching all of this autonomic stuff, and he’s doing some novel research into CFS in quantifying the mechanisms by which the body fails in CFS.

He treats CFS w great success using Mestonin. I know some people in the dysautonimia groups who have had great success with it. If you call his lab he will run one of those exercise tests that looks at your metabolic and cardiovascular output

Please read:

https://www.prohealth.com/library/exercise-tests-suggest-autoimmunity-causes-the-exertion-problems-in-chronic-fatigue-syndrome-fibromyalgia-and-pots-42746?fbclid=iwar3ucyezzuzdmcqh_w2knxgp-vk_x925kw2dkitrywrhzz56jefrbzitlpe#:~:text=

And definitely watch, very informative:
https://youtu.be/az-1oaynh2k

Potsnpans, the video seems up your alley since it filled w hard data used to quantify and prove this stuff scientifically, which I know you like

Post Edited (dcd2103) : 2/20/2021 6:23:19 AM (GMT-7)

Hi all, thanks all!

@potsnpans: How long you did DSF and how looks your dosage? I know some your posts, but I don't know how long it all took. What improvement in %?

I think tetracyclines are more, more dangerously for mitochondria. Interesting protocol from "acrined". I tried D-ribose, and also NAD+ (better option than basic nicotamide I trust).

You did some mitochondria testing? I did, in our Czech lab called MitoLab. There was a lot associated with genetic testing and all my results are fine....like ATP, amino acids... only CoQ10 is still little bit low. This is interesting, because I do long time 200 mg/daily of both CoQ10 forms.

Ketogenic was without effect for me, I think its maybe not right way for chronic patients...body need all nutrients.


@WalkingbyFaith: Oh sorry, yes, I did not notice :-/ Thank you for copy!
mycotoxins - this was interesting, because ERMI testing show extremely clean house withotu any molds! My high Ochratoxin A must be from food. I did lot of Okra, Charcoal and Zeolite. Okra is very recommended from dr. Heyman. I do not have access for Cholestyramine, this is, why I tried Okra and more binders.
I did this "cleanse" for 4 months with high doses. No effects for me, but I hope my Ochratoxines and lower now (not control testing because no money).

Yes - Im patient without herxes at all. Only 2 - 3 small herxes in start with DSF.

Dental work is done - no cavitations, only last tiny amalgam left.

I dont have any psychic symptoms, this is why I think autoimmune encephalitis is not my problem. But it may be good to verify it. Thank you! I don't even have brain fog - classic symptom for many.

Yes yes, ME is very, very possible! Thank you for Healthrising article... I know Jeffs story...and Jennifer Brea had same issues with EDS / CCI. Last year I did 3T MR head and cervical spine for exclusion of it. My doctor says its good, normal, but I was advised to contact a larger specialist abroad and send him my MR pictures.
Fact is, I have bad back - hyperkyphosis. But I suppose in this case, the deterioration in health would be creeping if it were caused mechanically. My CFS started from day to day 7 years ago with flu-like symptoms.

@Garzie: This looks like a very same state like me! You also feel huge inflammation in body...and are you sensitive to temperature? Im!

Thank you for sharing what help you most! Amazing...and Im really happy from you! How long you did Buhner? I haven't tried adaptogens yet (money limits).

This is, what helped me most in past, unfortunately only temporarily, then came the relapses.
Note that the treatment is not related at all - these are completely different things, but they all caused an improvement in all the symptoms.

1. HBOT - 50% better, 30 sessions, work 5 months, secont try with 40 sessions 30% better, 3 months work
2. oral Cromolyn (mast cell stabilizer) - 40% better, works for 4 months (from blood tests I dont have MCAS)
3. L-Carnitine - 20% better, 5 months works


@dcd2103: Thanks! Will write later, my eyes hurt from the monitor :-/

@dcd2103: It also occurred to me...when we talk about Systrom - did you CellTrend test for acetylcholine and muscarinic autoantibodies?

Check mine: https://www.dropbox.com/s/1z9k83in8bddayc/18-06-13%20Result%20Report%20POTS%20-%20CZ%20-%20Kuska.pdf?dl=0

This is, why I try Propranolol and Pyridostigmine now. According to the results, I should use some alpha blocker too.

Hey @Garzie OAT test is from Great Plains Lab? I'm trying to find sample results know what this test contains.
I did lot of metabolism, gene and mitochondrial testing here in Czech on genetic clinic and want to know, whether it also contains markers from OAT,

I have very low Quinolinic Acid...this is very interesting for me, it doesn't correspond to my feeling of inflammation at all!

Thank you for tips ;-)
You are from Europe, this is why you buy herbs in LymeHerbs.EU?

MartinK said...
Hey @Garzie OAT test is from Great Plains Lab? I'm trying to find sample results know what this test contains.
I did lot of metabolism, gene and mitochondrial testing here in Czech on genetic clinic and want to know, whether it also contains markers from OAT,

I have very low Quinolinic Acid...this is very interesting for me, it doesn't correspond to my feeling of inflammation at all!

Thank you for tips ;-)
You are from Europe, this is why you buy herbs in LymeHerbs.EU?

ref Quinolinic acid - thats unusual Martin - from my research pretty much all intracellular pathogens that can infect the CNS tend to cause high quinolinic acid - Lyme, Bartonella, rickettsia, etc all were documented to do so.
its part of the tryptophan metabolism in the brain and tends to go along with low seratonin - but is mainly due to one side of the pathway being overly active - causing imbalance in the neurotransmitters.


sample reports of the OAT test here
https://www.greatplainslaboratory.com/oat-samples

i have no affiliation - the sample reports are helpful as they try to explain what the markers mean

eg this one on quinolinic acid
https://images.app.goo.gl/HzUPhocu7HFEUCEy7

yes Europe - well - not anymore (post-Brexit) as i am based in the UK

Hi Martin

you have many similarities to my own condition it seems - i have Lyme and suspected Bartonella also - possibly others as I also have high titers to Mycoplasma Pneumonia - but no lung or breathing issues except small bright spots on cat scans ( many people have these - could be from past infections ).

the write-up in your link was interesting - he sounds like a very well-informed doctor to know about LPS induced systemic effects.
the link between LPS and prostaglandin E2 is not something i have seen written about much in the gut health / functional health community.
what I find interesting is that this pathway stimulates many of the same inflammatory cytokines seen in lyme disease NF-kB, IL-6, COX-2, MAPK and is also therefore suppressed by many of the herbs used to treat Lyme disease - eg resveratrol
eg - https://www.spandidos-publications.com/10.3892/etm.2019.8396

raising the possibility that much of what people experience as chronic lyme - could, in fact, be a gut bacteria LPS intolerance effect

I don't think my prostaglandin levels have ever been tested - but anything which
1, adds to the bacteria in my gut - probiotics or prebiotics
or
2, kills bacteria in my gut - eg antibiotics, antibacterial herbs etc
tend to give me increases in symptoms - or herx like reactions

by the way - there is a lot of discussions recently on this forum by myself, dcd, Potspans, walkingbyfaith and others on the possibility that this LPS related mechanism driving inflammation and ongoing symptoms. as it seems this is a common finding in people suffering from CFS - and many ( but not all ) lyme patients also.
eg this thread
https://www.healingwell.com/community/default.aspx?f=30&m=4235573

The cost of the Great Plains OAT test is $300-350 the last time I checked
there are other labs now using similar technology - eg genova

there is also another newer technology - DUTCH - which studies an even wider range of urine metabolites in a similar way - but uses dried urine - which is stable during transport it seems - also worth considering

Garzie,

WOW!!!!

“ sounds like a very well-informed doctor to know about LPS induced systemic effects.
the link between LPS and prostaglandin E2 is not something i have seen written about much in the gut health / functional health community.
what I find interesting is that this pathway stimulates many of the same inflammatory cytokines seen in lyme disease NF-kB, IL-6, COX-2, MAPK and is also therefore suppressed by many of the herbs used to treat Lyme disease - eg resveratrol
eg - https://www.spandidos-publications.com/10.3892/etm.2019.8396

raising the possibility that much of what people experience as chronic lyme - could, in fact, be a gut bacteria LPS intolerance effect.”

I didn’t read any link, just your comments. My doc did test my prostaglandins once in conjunction with some other tests for MCAS. Out of the things she tested, prostaglandins was the only one that was flagged as high. It wasn’t super high, but it was higher than lab range.

I have heard of prostaglandins playing a role in PMS and menstrual pain. I have not had a menstrual cycle in almost 2 years, so that shouldn’t have affected my lab results. I did, however, have a lot of pain and misery with my menstrual cycles for decades. Got better by mid to late 30’s.

I did not know it was linked to LPS or gut issues. I wonder if my doctor knows this.

Post Edited (WalkingbyFaith) : 3/6/2021 9:06:42 AM (GMT-7)

yes - my thinking is that there is likley a chain or caskade of actions and reactions going on in the body once inflammation in teh gut gets out of control
eg
inflammation in gut =>leaky gut lining=> more systemic inflammation + immune dysfunction+translocation of bacterial proteins and possibly live bacteria => a host more symptoms

may of which have the potential for self-perpetuating effects in the body or loop back to re-enforce upstream events to cause a vicious cycle and hence stuck health conditions

i have looked into specific mechanisms on this in the past - and of course, with any cascade with potential cycles within it, then it becomes really quite difficult to positively identify which is indeed the true root cause

prostaglandins could be in there or there could equally well be something else upstream of those

i will try to find time to write up some of what i found in my research on this and post it up for discussion

hi Martin
i find the phage-based test technology very interesting - but i am also wary because no one outside that single lab has any knowledge of it and I have not seen any validation of its sensitivity or specificity numbers

I had long conversations with Armin labs representatives on the LTT tests and they shared that it's not unusual for the LTT to be negative if you have low numbers of CD57+ cells - as that indicates a very low performing natural killer cell function / disrupted immune function and in those cases LTT is negative even if the infection is present.

i believe CFS symptoms are also associated with low natural killer cell functions ( of which CD57 are a subtype) - and so would be interested to hear if you had CD57+ cell counts tested

@Garzie: Yeah, I did "CD57 NK cells count" every year. It was very low, but IMD Berlin on "NK cells function test" shows good work of my NK cells. But now - after 6 months of DSF, Inositol IP6 and Oxymatrine, my NK cells count is in normal after years! From 40 000 to 95 000 in one year is amazing for me. Unfortunately, this progress did nothing for me. :-/

@Girlie: sure, sure, no problems with coinfections, constantly monitored and I do not even have typical symptoms of Bart or Babs. ;-)

“ @Girlie: sure, sure, no problems with coinfections, constantly monitored and I do not even have typical symptoms of Bart or Babs. ;-)


Lots of overlap with the symptoms.
This is why Dr J treats all the three B’s.
Just something for you to think about....