'Treatment' hints for dealing with the worst CFS-symptoms (subjective) & Dr. Jay A. Goldstein

[Mrparadise]

@Learner1 Many thanks for replying here! You are for sure right when you say that Dr. Goldstein retired many years ago but some people still think that he was a leading expert in this field. For me, his approach makes totally sense (as far as I understand it).

I had a look at the two PDF-files you attached to your post and they seem really good as well!

I should for sure test about all the viruses that could potentially cause CFS or at least contribute to its symptoms. Lyme disease I have already ruled out and it came out to be negative. But I am going to test for as many viruses as I can to see if there is an active one in my body. Also I want to find some proof for my CFS to show it to my family and even the government if I do not improve soon (money wise). I know that, at least in Switzerland, there are no official biomarkers for CFS but I've heared that for example SPECT scans and Cytokines could shed light into the disease.

@Howard Many thanks to you as well - much appreciated!

The tart cherry juice seems really good and I am for sure going to try it out - thanks for sharing it!

Regarding P.E.M., I did as well lift weights in the past to a degree that my muscles would almost die. So your theory makes sense even in my case (could still be coincidence though).

@PatJ Really glad you posted again, also your introductory post was helfpul!

I had a look on your blog for better sleep and it was really interesting! I will try out some of the thing that helped you for myself - many thanks for sharing! Also the THC/CBD mix you take is interesting. The problem could be that I used to smoke a lot of weed in the past (before CFS) and all of a sudden I got anxious and sometimes even got panic attacks from it.

Also the PEM shielders thread looks interesting and I will have a look at it later, thanks!

I heard a lot now that people with SIBO generally have low stomach acid. I should test myself for that as well and if it comes out positive I would try out pepsine and betaine HCl as well.

 

[Learner1]

I should for sure test about all the viruses that could potentially cause CFS or at least contribute to its symptoms. Lyme disease I have already ruled out and it came out to be negative. But I am going to test for as many viruses as I can to see if there is an active one in my body. Also I want to find some proof for my CFS to show it to my family and even the government if I do not improve soon (money wise). I know that, at least in Switzerland, there are no official biomarkers for CFS but I've heared that for example SPECT scans and Cytokines could shed light into the disease

There is no biomarker for ME/CFS that patients can use. And, Unfortunately there are no approved treatments, so being diagnosed with ME/ CFS is not so important. It is far more important to diagnose and treat any other problems you have, like the viruses. You might find the attached helpful. Other patients have used tests from this lab to be able to find issues. You probably don't want to do them all at once, but target a few and see where you get, and then add other tests as you go along. Or maybe there's a Swiss lab that does what you need.

As for spect scans, they are like looking at the contrails of an airplane. They really tell you nothing about what's going wrong, just that you have something wrong. I find it more useful to go for the biochemistry and antibody titers and PCRs and treat what's found. Cytokines are kind of a funny thing, they communicate that something's going in in the immune system, but they can be all over the map, and they can change fairly rapidly.

The doctors I've worked with have tended to test IL-1B and IL6 to look for inflammation. However mine were low and I did a CytoDX panel of a targeted set of cytokines, which fortunately for me did show a clear pattern of autoimmunity, which led me to looking to treat autoimmune antibodies that were found. The strategy is paid off, but not everyone will be so lucky looking at cytokines. Personally, I'd do the other tests first.

 

[Mrparadise]

@Learner1 That is highly imformative! When you say that i should start with a few tests to begin with, which one specifically would you recommend to do first. I am interested the most in testing for 'things' that could really be responsible on its own for the CFS-symtoms (i hope you understand me, because my English is not that great). So lets say they found an active virus with high titers then I guess the treatment chances will be higher than just trying to improve the CFS-symptoms without having a clue what could be the cause.

Also I am now searching for a very good doctor but in Switzerland there is no official profession for ME/CFS. So I am thinking of doing a lot of tests and then visit a really good CFS practitioner abroad.

I am really desperate at the moment because I dont really know where to start (also I did quite a few tests already without any helpful outcome).

 

[Learner1]

There are very few doctors anywhere, so getting data on things that water treatable us the most useful. Not knowing you, or your history, these would be the things most patients should check:

1. Any neck or structural issues that might be causing pinched nerves. Testing might include an x-ray or for more in-depth view a standing MRI. If this is a possibility, you might want to look into Jeff W's mechanical basis website for instructions.
2. A full thyroid panel including free T3, free T4, thyroglobulin and TPO antibodies, and reverse T3. Getting thyroid properly adjusted can help you function while looking into other aspects.
3. 24-hour saliva cortisol test as well as other adrenal tests like an ACTH, morning cortisol, or ACTH stim test. some patients have high cortisol, but many have low cortisol and supplementing with hydrocortisone for adrenal sufficiency can again help us function better while we investigate other aspects.
4. Viral testing, including herpes family viruses, and maybe enteroviruses and Coxsackie virus. And, if a possibility, Lyme and coinfections.
5. Immune function testing - immunoglobulins with subclasses and a lymphocyte panel
6. Mycotoxin testing
7. Heavy metal and essential mineral testing
8. A Genova Diagnostics NutrEval testing (European office in London can help you find a doctor - I believe there are a couple in Switzerland.)

 

[Mrparadise]

@Learner1 Many thanks Learner - I will try to get this checked as soon as I can!

 

[HABS93]

@Learner1 Is it worth getting western blot for lyme ?

 

[Learner1]

@Learner1 Is it worth getting western blot for lyme ?

Sorry, I'm not a Lyme expert. Best wishes, though...

 

[Dufresne]

@Hip @Shen Many thanks to both of you for replying again!

I would have another question:

When I wake up, I feel by far the worst. My joints are stiff and I feel poisoned somehow - mentally extremely slow and confused and physically limited. I mostly have to lay down while brushing my theeth (shortly after waking up). This let me believe that something regarding my sleep has to be very wrong but after two sleep studies, nothing other than a low amount of central sleep apneas came out (they told me that this surely is not responsible for my fatigue). Other than that I am affected by bruxism and slight amount of PLMD (periodic limb movement disorder); but as well too slow to be significant. Is it really possible that CFS causes this and if yes, is there any mediaction or 'treatment' for this?

Furthermore, could someone maybe suggest some things to try for the other symptoms listed in my initial post on the very top?

Many thanks in advance to everyone!

Beware ruling out infections with weak tests. A conventional Lyme test (ELISA) indicated I didn't have it, and then the far more specific western blot came back positive. One would want to use a good lab like IGeneX for this.

An alternative doctor might suggest bruxism is a symptom of parasitic infection. Similarly the testing is a problem; people do a CDSA and they come back all clear, but then they expel a worm after a couple enemas. It's amazing to me that we still have such faith in medical testing when such a thing occurs.

Regarding feelings of being poisoned, you probably are. Perhaps try some detox, binders, etc.

Have you looked into autoimmunity for the joints? Morning joint pain, especially if it's bilateral can be symptoms of this.