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

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And now, one interesting conclusion - I found, that I have a crown in my mouth since the year my problems started...:-/

perhaps I have found the right way...really big new hopes :)
Hi Martin!
Did you get the tooth out ? Did you get a 3D scan (Cone Beam) to check for hidden infections? How are you doing?
I am exploring the cavitations as a possible root cause of my CFS.
 

MartinK

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hey @Pauline91 yes, my tooth is out. And Cone Beam check too. Looks like all is perfect in my mouth now! :-D
More info about how Im doing now in next message! And I hope you find you root cause and work on it! ;-)
 

MartinK

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Hi all, some news here! Hopefully this will be a good read for anyone who likes positive news!

Spring of 2020 was really hard for me and I was in my worst condition ever - bedbound for 23,5 hours/day, very, very inflammed and my PEMs was 5 days long after any activity...
I did lot of bloodwork thought summer in IMD Berlin and this shows very, very positive LTT test for Lyme. Again...
Just so you know - I'm allergic to "Lyme" diagnosis after this 7 years of my CFS... Also thanks KDM haha!
It's so hard to know if the activity is correct... there is a possibility of cross reaction with EBV and more... read this:

"What can cause a false positive Lyme test result? The two most common infections that can cause your Lyme titers to be positive are Epstein-Barr Virus (the virus that causes mononucleosis) and Toxoplasma gondii (a parasitic infection). Less commonly, individuals with Syphilis and Parvovirus B19 (also known as Fifth’s Disease) can have positive Lyme disease titers."

On the other hand, I was happy with other results - many of them are better!

@Learner1 helped me a lot to decide what to do next. Thanks! I also added some my own ideas...

- now Im doing much more for better gut
- now 3 months on DNRS
- Ketotifen and Flonidan for 4 months
- Disulfiram for Lyme for 3 months, now on 300 mg/day
- more L-Carnitine
- this month I will start Oxymatrine for my very, very low IFN-g ...thanks @dreamydays for tip for buy!

Now Im better, today I danced for some minutes and it was amazing!! last month I rode my bike for some minutes. My PEMs are really shorter and better - only for 0,5 or 1 day! My energy levels are little bit better and I think, now Im 2 hours out of bed. My sleeping is normal! I sleep for 9 hours every day...amazing!

Fact is, I dont know what work for me best from this protocol...really hard to say. Its a small progress...but its amazing. I don't know if disulfiram works, but my liver works wonderfully, so I want to stay on it for the whole recommended time. I think DNRS is what helped me with sleep.

My biggest problem is still fatigue, inability to stand or sit and burning/pain in the muscles after activity.

But I want to move on! Faster, better...taste active life next year again...motivation is big

Therefore I have a question - would any of the EU members help me a little with online pharmacies?

I want to try thought this winter:
- Pyridostigmine
- Celebrex
- LDN
- Copaxone

Here in Czech Republic is very hard to buy on online pharmacies due to customs :-/ Please, PM, if someone can help to send some of this ;-)

Regards, Martin
 
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Learner1

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@MartinK thanks for the update!

Perhaps the supplement, Huperzine A, might be easier to get instead of prescription pyridostigmine? They do pretty much the same thing, increase acetylcholine to help POTS. I take Huperzine A and have found it lasts longer and has fewer unpleasant side effects than pyridostigmine....

Celebrex is a COX-2 inhibitor and antinflammatory. Curcumin has these properties as well.
 

MartinK

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Dear @Learner1 thanks a lot again! :)

I tried both, especially curcumin for long time, in best form - like Curcum-Evail. This is why I want to tried pharmaceutical form of mentioned drugs. My goal is to try to reduce inflammation as much as possible and help the muscles to function properly.

I had high positivity in my CellTrend in past:

Anti A-1- adrenergic Antibodies - 24.7 (7 is border) ...for this what drug, when I have normal blood pressure?
anti-Muscarinic Cholinergic Receptor 4 - Antibodies - 15.1 (7 is border) ...for this pyridostigmine

*I do not have POTS, but I think this may shows why I have still very, very big problems with sitting/ standing/walking.

Did anyone do the appropriate treatment according to the results of the CellTrend?
 

Learner1

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I have the same antibodies.

My specialist had me do metoprolol, Huperzine A (I couldn't have pyridostigmine due to allergens in the "inert ingredients" so Huperzine is an excellent substitute, lasting longer with fewer side effects), high dose IgG, and then Rituximab
 

MartinK

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Thanks @Learner1 ! Is metoprolol ok, when I have normal normal blood pressure, sometimes little bit low?

I have decided, and I think it will be systematically the right one, if not the best - do massive testing for all infections, which can cause false positive lyme tests, what I describe here:

"What can cause a false positive Lyme test result? The two most common infections that can cause your Lyme titers to be positive are Epstein-Barr Virus (the virus that causes mononucleosis) and Toxoplasma gondii (a parasitic infection). Less commonly, individuals with Syphilis and Parvovirus B19 (also known as Fifth’s Disease) can have positive Lyme disease titers."

Now I know:
EBV results OK - but I will do LLT test, which I believe is the most accurate
Toxoplasma gondii - not tested yet, there is a possibility - I had meat poisoning before my CFS, I realized!
Syphilis - not possible
Parvovirus B19 - not tested yet, it will be good to check for sure! - https://me-pedia.org/wiki/Parvovirus_B19

thought - how come LLMDs don't always check for all these infections that can cross-react! I also mean KDM, which Lyme diagnoses so often (sometimes always hahah)!

QUESTION - please, is here someone, who have experiences with diagnostic and treatment Toxoplasmosis and Parvovirus B19? Did anyone solve this with your doctor?

Thanks, I hope this will moved me again for remission.
 
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Hi Martin,
There is a Facebook group for LDN users, they will know how to get LDN without a prescription. If I remember correctly there is a pharmacy in Glasgow that ships it abroad.
Are you working with a functional doctor? I am waiting for my first consult with a doctor from the Redefining Wwellness centre (Kansas City, but they do Zoom consults), they have very good results with patients suffering from Lyme, mold, parasites etc. Dr Jaban Mmoore healed himself from Lyme a few years ago.
 
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How are you doing Martin? Are you working with a functional doctor who addresses all possible root causes of chronic illnesses, Lyme, mycotoxins, parasites, heavy metals?
I think you mentioned you still had amalgams, I would get them out. Remove all toxicity. Then work with a functional doctor who has experience with complex cases.
 

MartinK

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Hi @Pauline91 thanks a lot for your suggestions!
This is great news with LDN from Glasgow!

I have not seen a functional doctor. for the last two years, I have been solving everything myself to tell the truth, also for financial reasons. But I've been considering consulting an expert for a long time if I can't find a way to get better.

Fortunately, there is only a little toxicity in my body as it seems. I know no molds, no parasites, looks like only small problem with lead, no problem with mercury. Only 1 amalgam left. I remove them with my dentist gradually and carefully.
 

MartinK

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Hi all, I have still very severe CFS, I have to admit. I'm struggling now with a very long PEM, more than 1 month because sleep problems - wake up to much early, or I can not sleep. This always will throw me again into next PEM...its like vicious circle :-( But some news here, I want to talk about it! :)

  • I started propranolol (20 mg/daily) and pyridostigmine (20 mg/daily). small doses, slow... I think the effect of propranolol is very fast, right? On the contrary is pyridostigmine...need to increase the dose for a long time, right?
  • I started Kratom Borneo Red when muscle pain is bad and strong (usually after insomnia when PEM is harder). Work really good! Only for few hours, but its a great relieve.
  • I started PEA (https://www.rs4supplements.com/en/pea/peapure-400mg) because its a really better option than scary NSAIDs. Now I can lie in bed for a long time without my back burning.
  • Still doing DNRS, good help for calm and better mood...maybe also little bit for sleep.
I have new LTT results of my Lyme...Disulfiram probably worked very well, but these Borrelia strains are probably not my main problem because I'm not feeling better. LEFT - before treatment, RIGHT after DSF!
porovnani LTT Lyme.jpg


Bad news - PHELIX Phage test from REBlabs find positive (only) Borrelia miyamotoi. How goes your treatment @serg1942 @aurel @newbie_85 ? I just started Cistus Incanus tea + Core Buhner. There is a question - does the DSF work against miyamotoi? I need some rest after DSF, for livers.

Next thing I want to solve is this:
IMG_0315-1.jpg


This is not the first time, when I see high VZV Varicella Zoster. I am thinking about some weeks with Aciclovir. Please, @Hip @Learner1 , you have a veeery big overview, Do you know anyone from the forum whose CFS was caused by this virus and acyclovir treatment helped them? I tried to search, but in vain.

I know VZV normally lives in a latent state in the nerve ganglia - and there causes common encephalitis (if I understand it right). Can that explain my neuro inflammation?

EBV may cross-reaction antibodies with Lyme. Hard to interpret results... I've ruled out other things that may cross-react with Lyme, but I'm clean.

Last thing, interesting test also from IMD Berlin - Immunomodulation. Want do do Broncho Vaxom, because may increase NK cells (CD57) ...My is low for a long time. I give for inspiration...

IMG_0317-1.jpg


I feel like I've moved on, but mainly to find a functional way...I don't want to do risky stupidity that could make me more worse, more severy...
Thank you to everyone who gets involved with your ideas and opinions :)

Martin
 

Hip

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This is not the first time, when I see high VZV Varicella Zoster. I am thinking about some weeks with Aciclovir. Please, @Hip @Learner1 , you have a veeery big overview, Do you know anyone from the forum whose CFS was caused by this virus and acyclovir treatment helped them? I tried to search, but in vain.
Dr Chia finds that when ME/CFS is due to active VZV, a few weeks of acyclovir can cure the illness. This is one of the most treatable forms of ME/CFS.

However, I believe Dr Chia diagnoses active VZV not via high VZV antibody levels, but by the presence of shingles rash on the skin. So VZV diagnosis is unusual, as it done by visual inspection. Even if you only have one or two shingles blisters, for Dr Chia this is enough for an active VZV diagnosis.

See this thread for more info.
 
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I have new LTT results of my Lyme...Disulfiram probably worked very well, but these Borrelia strains are probably not my main problem because I'm not feeling better.
Not necessarily. Many people with Lyme, or any other bacterias or environmental toxins, are not making progress until they have treated parasites. Have you ever done a (long enough to be efficient) parasites cleanse? Mimosa pudica is the most effective parasites killer.

There are also people whose CFS was caused by parasites only. But it is very often just one piece of the puzzle. Parasites are thriving in a weakened immune system with poor gut function, becoming "toxic bombs" themselves, making us even weaker and more susceptible to EBV reactivation, chronic Lyme etc. Have you ever worked with a functional doctor who addresses parasites, mold, lyme, heavy metals?
 

MartinK

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Thanks @Hip I probably haven't found this thread before. Looks liek no shingles blister here, but I'm deceived by the high positivity I don't see for the first time.
Looks like there is no difference between Aciclovir and Valtrex, because Valtrex will be transformed to Aciclovir?
I did some Valtrex in past without effects. I think, it was 4 years ago, and 2 months on it.

@Pauline91 yeah, Iooks like no parasites and mold here, lot of investigations in past. Heavy metals maybe little, lead was on hair test in past, but I doubt it's part of my problems.
Fact is, I waiting for my last amalgam removing and I'm ready to try some chelation protocol. Rather out of desperation, to be honest. :-/
 

Hip

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Looks like there is no difference between Aciclovir and Valtrex, because Valtrex will be transformed to Aciclovir?
I did some Valtrex in past without effects. I think, it was 4 years ago, and 2 months on it.
Yes, Valtrex is transformed into acyclovir, and would treat VZV ME/CFS very quickly, within weeks, according to Dr Chia. So I think you would have noticed improvements while taking Valtrex if you had VZV ME/CFS.
 
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yeah, Iooks like no parasites and mold here
Make sure you take Mimosa pudica for a few weeks before discarding parasites. Most people have them. If you have ever walked outside barefoot, swam in a lake/river, or eaten fish or pork, or have pets, you have parasites. And there is no reliable test to detect them. Also most of them are so tiny that you don't see them in feces. And they can hang around anywhere in the body not just the guts. ;)

About heavy metals, I personally haven't had any success with chelation (Andy Cutler chelation protocol), but I suspect I should have definitely worked on opening up my detox pathways. This is completely overlooked by the preachers of Andy Cutler chelation -_-

Have you ever tried coffee enemas? It's a very helpful healing modality for people with chronic illnesses AKA toxins overload, it's a natural way to boost the liver's glutathione production =)
 

MartinK

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Thanks @Hip ...just came PCR results of EBV and VZV...both negative. By this I assume that it is not really a reactivation. But for EBV in CFS we know that maybe PCR is not the best test :-/

@Pauline91 Thanks, you have your own experiences with Mimosa pudica? Just trying learn something about this herb. Looks like best are capsules with seeds, no tincture.

No coffee enemas here :) But know it for long time, I just have to admit that the enema has never been very pleasant to me :-D
 

Hip

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Thanks @Hip ...just came PCR results of EBV and VZV...both negative. By this I assume that it is not really a reactivation. But for EBV in CFS we know that maybe PCR is not the best test :-/
That's right, ME/CFS doctors generally look at antibody levels rather than PCR results.

Dr Lerner's criteria for active EBV is high VCA IgM and/or high EA IgG diffuse.
 
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Thanks, you have your own experiences with Mimosa pudica?
Not yet, I am having a Zoom consult with a functional doctor next week, she will have me start a comprehensive detox protocol, using Cellcore products. Mimosa pudica is part of their parasite cleanse :)
I think she will recommend coffee enemas too.
And I was thinking of doing liver flushes, but actually there are supplements from the Cellcore protocol that seem to achieve the same results as the Moritz method to clean the liver. A clogged liver is the cause of so many health issues! Chronic fatigue being a very common symptom.