Dont know what to do next after lot of treatments - every opinion is welcome! CFS/Inflammation

[aquariusgirl]

@MartinK
I was just reading through this thread. Wow....very impressive results with Disulfiram.

Also, earlier you talked about diarrhea and other symptoms. I wondered if they could be related to disulfiram.

So DSF chelates copper and nickel .....so when patients on disulfiram forums complain of mast cell symptoms.. I wonder if the drug has chelated their copper, which is a cofactor for DAO which breaks down histamine.

Presumably, they would have to be pretty low in copper to begin with, so I'm making a couple of assumptions here.

DSF is apparently an inhibitor of the enzyme PAM, which is involved in the synthesis of signalling peptides, such as MSH, neuropeptide Y, VIP, etc...MSH has been documented to be low in CIRs patients. One symptom of low MSH is diarrhea, according to Dr Andrew Hayward.

https://www.ncbi.nlm.nih.gov/pmc/ar...-OmDVGKtFhAUSRsay5N4S2KHAGAgfbyACasx1zJErHKfk

Another poster on facebook outlined other issues with DSF, below.


- metabolites versus intact molecule, in vitro versus in vivo
- Tryptophol
- effect on Dopamine oxidation, Norepinephrine, and psych symptoms
- neurotoxic effects of accumulation of Dopamine and Norepinephrine aldehydes
- liver toxicity
- reduced metabolism of Acetaminophen, caffeine, and theophylline

1. Dr. Kim Lewis' in vitro study demonstrated eradication of Borrellia with Disulfiram. While interesting, this information is not useful clinically, because Disulfiram never reaches the blood stream. Instead, the metabolites are what reach the blood stream (S-methylN,N-diethylthiocarbamate and its sulfoxide, diethylamine, and carbon disulfide). It's possible one or more of these have antimicrobial activity.
Before experimenting with patients, why not do a simple in vitro study of the effectiveness of these metabolites (individually and in combination) on Borrelia persisters? If these metabolites work in vivo, they would have to work in vitro, but the converse is not necessarily true.
https://www.ncbi.nlm.nih.gov/pubmed/1471547
2. Disulfiram also produces Tryptophol in the liver. Tryptophol is believed to be genotoxic.
https://content.sciendo.com/.../aiht/62/1/article-p41.xml
3. Disulfiram reduces the oxidation of Dopamine, causing a possible increase in patient Dopamine levels. It also reduces levels of Norepinephrine in the brain. This can be beneficial in some cases, but seriously dangerous in those with mental health issues, depression, anxiety, etc or sensitivity to Dopamine.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5290718/
4. The inhibition of Aldehyde Dehydrogenase not only affects the metabolism of acetaldehyde (post ethanol) but also the aldehyde metabolities of Dopamine and Norepinephrine. These are neurotoxic substances. http://pharmrev.aspetjournals.org/content/59/2/125.long
5. Liver toxicity and injury. Perhaps ALT should be monitored weekly or bi-weekly. When Disulfiram was more commonly prescribed, it was likely the number 1 cause of medication induced liver injury.
https://livertox.nih.gov/Disulfiram.htm
6. Disulfiram reduces CYP450 2E1 and thus slows metabolism of Caffeine, Theophylline, and Acetaminophen. Attached is the Flockhart table which is useful for all medications to view substrates, inducers, and reducers.
https://drug-interactions.medicine.iu.edu/Main-Table.aspx

 

[gbells]

Prusty's recently released paper claims that HHV-6 is involved, and that it alters the immune response of mitochondria

Prusty did excellent research and has been begging for funding. I think Solve ME is funding him. He papers on mitochondral fragmentation were a revelation. A very common ME complaint is depression and now we know from other research that HHV6 makes SITH1 which causes depression. EBV blocks Nf-kb which stops aptosis, HHV6 stops apoptosis at caspase-3 which was a problem in the current forumlation of Vtose that I criticized to them about. If you fragment the mitochrondria of course will lower apoptosis because there is less energy produced from them which explains the ME deficit. So ME patients end up with all these infected cells that want to apoptose but are immortalized, draining energy further. No wonder we are in such bad shape.

 

[MartinK]

@aquariusgirl yeah, DSF results looks really good, bad thing is no change for me after treatment :-/
Yes, DSF in effervescent form caused me diarrhea, but classic oral form in enteric capsules works well for me!

I had no side effects from Disulfiram at all, when I used enteric capsules. But I do very good supplementation with every treatment for decrease side effects. But now I want to do some break with DSF, let the body recover and see if the improvement comes later.

Next week I do another testing for my only positive Lyme strain - B. Miyamotoi

According to amazing @Hip https://mecfsroadmap.altervista.org/ I checked that I probably don't have any active viruses now and also in last years. Some antibodies are elevated, mainly in EBV and VZV, little bit HHV6 and EV6 but it is not 16 x more higher than limit. See here:

EBNA IgG 12.56 >> S/CO (0.00 - 0.50)
EBV VCA IgG 67.30 >> S/CO (0.00 - 0.75)
EBV VCA IgM 0.05 S/CO (0.00 - 0.50)
EBV EA IgG <5 U/mL (0 - 40)

HHV6 - 2.57 >> arb.j. (0.00 - 1.00)

VZV IgA 0.06 IP (0.00 - 0.90)
VZV IgG 3.87 >> IP (0.00 - 0.90)
VZV IgM 0.10 IP (0.00 - 0.90)

Also all PCR tests are negative, but know, its not always the best choice.

I won't spam all the results here, but I've verified everything. My bank account is in hell! Near bankruptcy :-/

Thanks @gbells for info with HHV6, but Im really happy looks like no active in my cause


Now I'm trying Propranolol and Mestinon (Pyridostigmine. This week with 40 mg of beta blocker and 40 mg of Mestinon. If anything helped me with PEM and energy, decrease my OI, I would cry with joy!

 

[5vforest]

Thanks for continuing to update us @MartinK.

As I think I've mentioned before, you and I have very similar histories and symptoms, so you might be interested in snooping on my recent thread (like I am here snooping on yours

 

[Hip]

I probably don't have any active viruses now and also in last years. Some antibodies are elevated, mainly in EBV and VZV, little bit HHV6 and EV6 but it is not 16 x more higher than limit. See here:

EBNA IgG 12.56 >> S/CO (0.00 - 0.50)
EBV VCA IgG 67.30 >> S/CO (0.00 - 0.75)
EBV VCA IgM 0.05 S/CO (0.00 - 0.50)
EBV EA IgG <5 U/mL (0 - 40)

If you go by Dr Martin Lerner's criteria for diagnosing active EBV in ME/CFS, then you would not have an active infection. But if you go by Prof Montoya's criteria, then you might have an active infection.

Dr Lerner says active EBV infection = high VCA IgM and/or high EA IgG diffuse. Refs: 1 2

Prof Montoya had his own EBV criteria, with active infection indicated by high EBV VCA IgG and EBV EA IgG (but he also required high HHV-6 IgG). Refs: 1 2

In your above EBV VCA IgG lab test, assuming 0.75 is the threshold for negative, then your result of 67.30 is 90 times higher than the negative threshold, so that is pretty elevated.


Originally in the roadmap I included both Lerner's criteria and Montoya's criteria. However, because this was confusing, I took the Montoya criteria out, leaving only Lerner's criteria. Lerner had successful clinical trials using Valtrex to treat EBV ME/CFS patients diagnosed with active infection by his criteria.

But I am thinking of putting the Montoya criteria back in. The only thing is, I don't know which criteria are right, or if they could both be right.

Anyway, so you would not have an active infection by Lerner's criteria, but I believe you would by Montoya's criteria.

 

[Cipher]

Yes, DSF in effervescent form caused me diarrhea, but classic oral form in enteric capsules works well for me!

Interesting! Did you get disulfiram in enteric capsules from the pharmacy, or did you make your own?

HHV6 - 2.57 >> arb.j. (0.00 - 1.00)

It seems like your HHV-6 antibodies were tested using ELISA. Was it IgG or IgM? According to the HHV-6 foundation, ELISA cannot reliably tell you if your antibody titers are abnormally elevated. IFA however can, and when it comes to the laboratories the HHV-6 foundation have tested, IFA IgG titers above 1:160 were abnormal.

 

[MartinK]

I also made a comparison of my EBV results from 2020 and now (no from same lab).

2020
EBV-VCA IgM <10.00 (0.00 - 20.00)
EBV-VCA IgG 455.00 >> (0.00 - 20.00)
EBV-EA IgG 5.07 (0.00 - 40.00)
EBV-EBNA IgG 125.00 >> (0.00 - 5.00)

2021
EBV VCA IgM 0.05 S/CO (0.00 - 0.50)
EBV VCA IgG 67.30 >> S/CO (0.00 - 0.75)
EBV EA IgG <5 U/mL (0 - 40)
EBV EBNA IgG 12.56 >> S/CO (0.00 - 0.50)

EBNA IgG looks the same, IgG is now little bit more positive, if I count right.
@Hip thank you for mention Montoya! Just out of curiosity - who do you consider a greater expert? I watched in the past mainly Martin Lerner.

I did in past 3 months on Valtrex and 10-pass ozone. I suppose it should bring at least a partial improvement, even though I know it's not enough for EBV. However, I didnt notice any improvement or herx response.

@Cipher Thank you for HHV6 info...interesting. I had HHV6 negative in PCR and this test I think its a Elisa, but from result I dont know, if IgG or IgM.

I think there is no DSF in enteric capsules on market, I did it my own ;-) Capsules was from http://purecapsules.co.uk/ ...DR caps.

 

[Hip]

@Hip thank you for mention Montoya! Just out of curiosity - who do you consider a greater expert? I watched in the past mainly Martin Lerner.

Hard to say. I find Lerner's abortive infection theory of ME/CFS very interesting.

If you are looking to treat EBV ME/CFS with Valtrex, then Lerner did a study on this, whereas Montoya did not.

But both published studies on treating herpesvirus ME/CFS with Valcyte.

 

[MartinK]

I'll probably add some of this to the protocol!
http://buhnerhealinglyme.com/symptoms/treating-ebv-and-mitochondria-damage/

Japanese knotweed, Chinese skullcap root, lomatium, licorice...

Again i'll take also Lysine and Monolaurin. I've tried that in the past, but maybe for small time.

 

[gbells]

Heavy metals - lot of amalgams from my mouth are out! Now only 3 amalgams inside, I was on big surgery with wisdom teeths, infection under one is treated - all without effects.
Best heavy metals testing is? Maybe here is some way...

I had two amalgam fillings in molars taken out by a "holistic" dentist around 1998. He replaced them using calcium oxide and composites. The replacements only lasted two years and ended up needing to be refilled or crowned. Amalgam is the only filling material strong enough to hold up long term for back teeth. I do not recommend removing them. Also, I did not get any health benefits from doing it. It was a big waste of money.

Also, the nonconventional root canal material he used needed to be later removed for retreament. However, that was a nightmare because it was super hard. It took an endodontist about three hours to scrape it out while tightly and uncomfortably clamping down on my jaw with his hand. This was worse than getting an apicalectomy (which also takes 3 hours) and that says a lot.

I stick with traditional dentistry and don't waste more time and money with these guys.

 

[MartinK]

@gbells A large part of that is paid by my insurance company...luckily!
Of course, its true that the results of this dental work are sporadic in connection with ME/CFS.

But I must admit that getting rid of my wisdom teeth has brought me some benefits. Mainly elimination of frequent aphthae in the mouth. At least something!

 

[MartinK]

THIS IS CRAZY! And now someone tell me who is lying hah!

Today i received results from Armin Labs because I wanted to verify my positive b. Miyamotoi result from REDlabs - PhelixPhage test.

I must admit that I havent more confused for a long time. It is known that the Elispot test - LTT is more often a false positive, so I believe in this true negativity. Is PhelixPhage bad? Or Armin labs test is no accurate? Lot of questions empower my mind.

Now I definitely dont know, after 7,5 years, what causes and worsens my CFS :-(

Do you verified the result of the Phelix test @aurel @newbie_85 @Jenc @serg1942 ?

 

[aurel]

According to louis teulieres, LTT is highly unreliable - you can trust neither a positive nor a negative result. It is particularly unreliable if you have already had antibiotic treatment.
In any case, a test should always be interpreted in the context of other lab results by a skilled and experienced clinician who understands your particular situation.
Do you work with a clinician or do you simply do the testing on your own?

 

[gbells]

Given that we know HHV-6 masks EBV I now am wondering whether it can do the same for bacterial antibodies which would give false negatives. If you have symptoms I would request treatment if you have HHV-6 just in case.

 

[5vforest]

Martin, I'm sorry to hear that the test results are only adding to the confusion. I think with the fact that all of these test methods have not been validated, we can only speculate why the results are not the same.

I am still in the same place as you, I have CFS-like symptoms and decent evidence of active Borrelia, but antibiotics have not helped me so far.

I want to have hope that I/we will find a treatment that works, but I think there is a decent chance that there is some unknown etiology for "post treatment Lyme" in the same way that the etiology of ME/CFS is unknown.

@aurel do you have a source that you can link for that? I am interested in what he has to say.

@gbells Martin's tests are PCR and T cell, they are not testing antibodies.

 

[aurel]

@aurel do you have a source that you can link for that? I am interested in what he has to say.

Check out the videos here https://louisteulieres.com/test-phage/
He talks about LTT And its Fragility

 

[5vforest]

Very interesting, I was not aware of his website. Thanky ou!

 

[JES]

These are my results. I never knew what to make of them. A Lyme disease diagnosis should also be based on the clinical picture. I never had a rash or developed any typical Lyme symptoms following a tick bite, although I've been to places with ticks and had at least a couple. I think Borrelia miyamatoi is even less known to cause long-term symptoms than burgdorferi, so I would say that result is worth even less time worrying about than mine.

I was prescribed a couple of antibiotics years ago, doxycycline and a macrolide to treat a chronic mycoplasma infection (which ironically shows negative on ArminLabs test). I didn't notice anything from the antibiotics, positive or negative. If you don't respond to antibiotics, I think it's probably a sign that this treatment path isn't worth taking.

 

[crypt0cu1t]

Hi there,
someone already knows me here, someone not... and I am not happy with this report at all. But...lot of disappointment in recent months.
Fact is, summer is here and this year is hot temperature lot of worse for me - I feel the bed is burning with me!
My problems are the same from the beggining - bad CFS and lot of inflammation feelings.
5 Years was could handle it, last year after some flu I get worse and this year is critical...lot hours of day in bed, hard symptoms.

This all after lot of treatments. I know I had a Lyme and EBV when I was a child and lot of doctors still want me on Lyme protocols, but I did not respond of all treatments in past - no herxes, no nothing... tetracyclines, clarithromycines, rifampicinum, metronidazolum, some IV atbx...
And herbs - Cowden full support for 1 year, now Buhner for 0,5 year - core and Babs... no respond, no herxes... I can drink it in liters and nothing happens. Maximum dosages are no problem for me.
Essential oils, stevia, enzymes...all things for biofilms and persisters...
dr. KDM still want me on "persister protocol" but Im pretty scared of this, when another atbx and herbs for Lyme do nothing for me. And I dont want more chemistry in my weak body.

With this all Im still on big support from supplements - CoQ10, liposomal C, good B complex, E, D, K, Curcumin with piperin, lot of good oils...

Some SC Immunoglobulines from my doc for 2 years now...

10-pass ozone - nothing for me

Ketogenic diet for possible mast cell activation and inflammation - massive ketogenic flu and no more for me. Maybe few days I was little better, but no longer results. I dont know, if do ketogenic for next months or stop it... (now Im 3 months on it)
Maybe I try histamine diet... but its all shooting void of despair.

HBOT - firts year impressive results, this year nothing for me (absolutely not understand it!)
Anyone thinking something about it? One year most effective treatment (40 sessions) and now (another 40 sessions) nothing... all in hard chamber.

Sauna, epsom salt bath - this detox methods makes my inflammation harder, another detox methods makes nothing. Somethimes PEM from this...and last PEM was from massage.

Mold things - dont know, I live in good new house for 12 years now...no molds here

Possible gut problems - many diets trying, no allergens...this make nothing too.
I was on KDM normix/mesalazine/biokult gut protocol without results. But my digestion feels perfectly fine...no bloating or something...better than ever. Dont understand, why Kyna and PGE2 are increased a lot... (LPS related)

Heavy metals - lot of amalgams from my mouth are out! Now only 3 amalgams inside, I was on big surgery with wisdom teeths, infection under one is treated - all without effects.
Best heavy metals testing is? Maybe here is some way...

Maybe is there some more in this crazy 6,5 year! But its a fact, I'm much worse over it all. Crazy thing is, on paper - on results (lot of investigation) is lot of results better and better! Im crazy everytime when I see results and feel my body, my CFS and inflammation... all is bad like 500 meters walk for a day and 2 days in bed after this "massive performance".

Sometimes I thought it was psychic (from despair), but fact is, I am very positive most of the time, carrying over a lot of things. Its not like - thinking about my state and symptoms comming, no - symptoms comming and I'll realize it.
This is, why Im little bit uncertain with all that neuro-programming programs... (DNRS and more) :-/

What do I think about it? Something inside me makes a massive inflammation and this makes all that problems - like chronic-active immune system fighting with something that doesn't exist for some time.

Fact is, I dont now what to do next? :-/ stop buhner and all around, save some money and try some completely different? Im very unsure with the infections in me, but still not find right way...
I think if I get rid of inflammation, I'll be much healthier, but I don't know how to do it anymore...

Some ayurveda stuff?
Parasites?
Get out last amalgams and start chelation?
Try immune supressors?
Hyperthermia? (because fever makes me better - 2 times verified after flu
Analgetics? (this is most crazy idea...no solving problem, but when I woke up after wisdom teeths surgery narcosis last year, I felt 100% healthy for 1 day! I attribute it to analgesics)
Bee venom therapy?
Or?

Everything is welcome! every advice, every tip...this can't work anymore, something must happen ...

Most crazy thing is, blood test results are still better, but Im still worse. and I don't know how I can endure that inflammation in the summer :-/

Thanks a lot, Martin

What dose of SCIG were you doing?

 

[MartinK]

@aurel I contacted Teulieres this week for consultation! ;-) Last 2 years I did all testing on my own. Before this I was KDM patient. I also contact dr. Klemann office for consultation, because he have many experiences with Disulfiram for Lyme.
I hope this brings some answers also for you @5vforest ;-)

@gbells Please do you have a link to some quality scientific article that would talk about HHV6 masking EBV? I would like to know more about it, EBV is still a big question for me and HHV6 as well. I need to get an IFA test too! Thanks

@JES testing only B. burgdorferi is very insufficient :-/ What about other strains?
Its very, very important check the status of tribes like Sensu Stricto group, Garinii, Afzelii and now also Miyamotoi.

Yes, without reaction to atbx is very suspicious if the infection is really positive and causing the problem, but it is important to mention that the infection can be so long lasting - now its only under a biofilm that most antibiotics cannot break. Therefore, some common protocols fail in chronic patients.

@crypt0cu1t I think it was 5 ml of immunoglobulin in one dose.