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

[Mrparadise]

Dear PR-community,

I have just introduced myself to PR and I am glad to be part of such a caring and highly sophisticated forum.

My most desired approach would be to test possible 'treatments', starting with the ones that helped the most people and provided the most substantial improvements. Therefore, I would have to find out, from what approach most people in here profited the most. For sure, I know that especially with CFS, everyone is different and if there would be an easy fix then this forum would most probably not even exist. But even knowing that, I would love to see what most of you benefited from.

In my introduction post I have been told that another approach would may be better and I can actually already understand why. The mentioned approach would be to write down the most debilitating symptoms (subjectively seen) and try to find something to reduce the suffer. I will try to put into words what affects me the most and would be grateful if someone could suggest a possible 'treatment' for these following symptoms.

1) Sleep: non-restorative sleep --> waking up extremely tired and feeling weak (feels like I am poisoned somehow). I can't sleep for more than 7 hours without waking up muliple times afterwards. Somehow I feel like sleep is a really big problem overall.

2) PEM: That's basically responsible for the huge impact of the disease in my opinion and I don't know how to deal with it other than pacing. The trigger is physical activity for sure but also emotional.

3) Not possible to enjoy life anymore, not being depressed but life does not feel vibrant anymore and I cannot tolerate alcohol like all my friends do once in a while.

4) Anxiety: I was already anxious before but I'd say a bit less than I am now. I can still function a bit but I try to avoid stress and any problems in order to not getting axious and overstimulated. That's really a huge limitation.

5) Stomach issues: SIBO, feeling full and strange in the belly all the time. Also my microbiome is not alright after doing some tests (also did a thryve sample recently)

Then I also wanted to mention a possible approach that I want to try: For me, so far, Dr. Jay A. Goldstein was one of the most informed doctor regarding CFS and I am really sad that he is not active anymore. I bought both his books and try to understand them even if it seems not too easy to do so. I am at the moment trying to find a practitioner in Switzerland who is willing to follow his treatment protocol. I am not sure if this approach is the best but what Dr. Goldstein stated in his books makes totally sense to me (as far as I understand it at least). I am aware that there is a PR-thread which is about this awesome doctor and his treatment protocol for CFS but I couldnt get enough actual patient reviews out of it. Is there maybe anyone who tried it and who is willing to share the information here? I know there are people who had the chance to see him personally but I search for someone who could have convinced a practitioner, after Dr. Goldstein retired, to try out his protocol.

There is a lot of information in the PR-forum and I will definitely going to read as much as I can here but I hope that someone is going to comment below. I consider every comment helpful and I will highly appreciate it.

Many thanks in advance for your help!

 

[Hip]

For me, so far, Dr. Jay A. Goldstein was one of the most informed doctor regarding CFS and I am really sad that he is not active anymore. I bought both his books and try to understand them even if it seems not too easy to do so.

The impression I have is that Dr Goldstein's treatments were flash in the pan remedies: they might work temporarily, but may not hold out long-term. I actually had great improvements from one of his treatmens: Wellbutrin. It worked really well, and I thought I had found my own personal way out of ME/CFS. But then mysteriously after 2 weeks, it just stopped working.

I think you will find someone else making similar comments in the Goldstein threads.

 

[Hip]

3) Not possible to enjoy life anymore, not being depressed but life does not feel vibrant anymore and I cannot tolerate alcohol like all my friends do once in a while.

You may be suffering from anhedonia, which is the loss of the ability to enjoy activities that were previously enjoyable. I have this. There is a related condition called blunted affect, which is were your emotions become weaker; this is a listed ME/CFS symptom.

4) Anxiety: I was already anxious before but I'd say a bit less than I am now. I can still function a bit but I try to avoid stress and any problems in order to not getting axious and overstimulated. That's really a huge limitation.

May be of interest: Completely eliminated my severe anxiety symptoms with three supplements!

 

[Mrparadise]

@Hip Many thanks for your input - much appreciated. May I ask you, as an experienced user, what treatment did help most people on this forum (if you have to name one or just a few) - based on your opinion and from what you have read in all the years.

If you were me, what approach would you chose in order to have a good plan? Like, in which order would you try things and where to start? I am aware of the treatment roadmap (I already did a lot of tests without any findings so far) but if I may ask you as a person what you personally would suggest in hindsight.

Many thanks in advance!

 

[Hip]

Many thanks for your input - much appreciated. May I ask you, as an experienced user, what treatment did help most people on this forum (if you have to name one or just a few) - based on your opinion and from what you have read in all the years.

From seeing stories on this forum, I would say treatments which have a track record of helping ME/CFS include: Valcyte, Valtrex, oxymatrine, vitamin B12 injections, tenofovir, GcMAF, IVIG, interferon, pyridostigmine and LDN. See: list of ME/CFS recovery and improvement stories.

You might like this roadmap document, which details those treatments.

 

[Shen]

You are right about our cases. Everyone is different. So yeah. Personal treatment its the best course.

How your CFS started is important for example. Particularitys in your case. Etc.

 

[Mrparadise]

@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!

 

[Art Vandelay]

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

'Unrefreshing sleep' is a hallmark symptom of ME. It's quite common for people with ME to feel horrendous in the morning.

 

[Mrparadise]

@Art Vandelay Thanks for the reply! And is there something that helps with that or to improve the sleep at all?

 

[Pyrrhus]

When I wake up, I feel by far the worst.

This is common among people with low morning cortisol levels.

Normally, a healthy person has high blood levels of the "wakefulness" hormone cortisol in the morning and then the level of cortisol declines during the day and is lowest during sleep.

Many ME patients have a disruption in their daily cortisol profile, with some having lower-than-average levels in the morning or higher-than-average levels in the evening. This is typically attributed to dysfunction of the hypothalamus in the brain.

Hypothalamic dysfunction can also include disruption in other hormones, too. For example, a disruption in the regulation of vasopressin can result in higher-than-average levels of thirst and higher-than average levels of urination.

Hope this helps.

 

[Mrparadise]

@Pyrrhus Thats really interesting, thanks a lot for sharing! But I guess theres not much to do about that, right?

 

[Pyrrhus]

@Pyrrhus Thats really interesting, thanks a lot for sharing! But I guess theres not much to do about that, right?

I guess that would depend upon your approach to treatment. If you're trying to treat the cause of the hypothalamic dysfunction, you might find few-to-no viable avenues of treatment. If you're trying to treat the symptoms, not the cause, you might find many avenues of treatment, but with many dead-ends.

Best wishes. Keep learning, keep asking questions, and most importantly, think for yourself.

 

[Mrparadise]

@Pyrrhus Many thanks again for your kind reply! Its a lot to do and I am a bit overwhelmed and do not really know where to start. I would love to be able to study part-time next month and therefore, would love to start trying new things as soon as I possibly can.

 

[Art Vandelay]

@Art Vandelay Thanks for the reply! And is there something that helps with that or to improve the sleep at all?

I use melatonin for sleep. It helps mostly.

Do you have gut symptoms? I noticed that you say you feel poisoned. I also feel poisoned/hungover a lot of the time and that this correlates with my gut symptoms. It's possible that inflammation causes toxins to leak from the gut into the bloodstream which makes us feel poisoned (ie, leaky gut).

I've found that taking a digestive enzyme has helped with gut symptoms and sleep. (Although I haven't come across anyone else who has had the same benefit.)

 

[Mrparadise]

@Art Vandelay Thanks for replying again!

May I ask you how much melatonin you take and what kind of digestive enzyme you take?

 

[Art Vandelay]

May I ask you how much melatonin you take and what kind of digestive enzyme you take?

I take a 3mg extended release dose of melatonin. Sometimes I'll also take a quarter of a 3mg melatonin lozenge (dissolve under the tongue) as well if I want to get to sleep quicker.

The digestive enzyme is fairly straightforward in that it just contains betaine HCL and pepsin. There's a confusing amount of choices of enzymes that have a wide range of ingredients. Many other members here will have different preferences. I probably wouldn't waste any money experimenting with them unless I had gut symptoms (I have an IBS diagnosis also).

 

[Mrparadise]

@Art Vandelay Many thanks for clarifying!

 

[Learner1]

@Mrparadise It sounds like you do have ME/CFS. A lot has happened in the ME/CFS world since Dr. Goldstein retired 17 years ago.

I've found the attached resources helpful in identifying treatable problems. Working in your gut is also helpful. You might see if you can do a Viome test which would give suggestions for foods and supplements to improve your gut. And look into mast cell activation syndrome, which many of us have.

The other areas you might look into are whether you have herpes family viruses or Lyme - look into Bhupresh Prusty's working n HHV6, RBC, and cytomegalovirus. And if you have any symptoms of POTS, the CellTrend test from Germany might be helpful in finding antibodies causing it.

 

[Howard]

Welcome. And I can surely relate to your symptoms.

I had the same issue for seven years, waking up, not sleeping soundly, and then eventually, waking up and feeling poisoned and exhausted. Finally being able to sleep soundly and waking up feeling somewhat recovered has helped me tremendously. I still can't get out of bed, nor move around much at all (although I am improved overall), but my mental cognition has increased significantly over the past three years, perhaps due to my having restful sleep (and being able to take naps!).

Tart cherry juice (or tart cherry powder) was game-changing, and got me headed in the right direction. Here's one pilot study supporting its use.

https://pubmed.ncbi.nlm.nih.gov/28901958/

Pilot Study of the Tart Cherry Juice for the Treatment of Insomnia and Investigation of Mechanisms - PubMed<https://pubmed.ncbi.nlm.nih.gov/28901958/>

Montmorency Tart Cherry Juice

Results: Eleven subjects were randomized; 3 with sleep apnea were excluded and referred. The 8 completers with insomnia increased sleep time by 84 minutes on polysomnography (P = 0.0182) and sleep efficiency increased on the Pittsburgh Sleep Quality Index (P = 0.03). Other questionnaires showed no significant differences. The serum kynurenine-to-tryptophan ratio decreased, as did the level of prostaglandin E2 (both P < 0.05). In vitro, cherry juice procyanidin B-2 dose-dependently inhibited IDO.

Conclusions: Cherry juice increased sleep time and sleep efficiency. Cherry juice procyanidin B-2 inhibited IDO, increased tryptophan availability, reduced inflammation, and may be partially responsible for improvement in insomnia


P.E.M.

Utilizing my muscles to any great extent and for any period of time initiates severe P.E.M. within 10 to 20 minutes. Depending upon the amount and the duration of muscle stimulation, I feel poisoned, exhausted, and in severe cases my breathing becomes labored and quite difficult.

Recovery time seems to depend upon the level of exertion.. or, the amount and extent of pressure applied to my muscle tissue. For instance, if my caregiver washes my feet, I feel mildly poisoned and exhausted for upwards of 20 minutes. If she washes my entire back, the symptoms may last up to four or five hours, but fortunately the breathing struggles only last for 30 to 45 minutes.

Physical exercise plays out much the same way. And I've long suspected something related to a rabdomiolisis response (a crush injury), wherein my muscles release a fair amount of myoglobin and creatine kinase into my bloodstream.

Why do I suspect this? My son had a rabdomiolisis episode when he was 3 years old, so perhaps it's genetically related, or I could be generally prone? Of course, I don't know.

The other thing is that up until I became too ill to do so, I used to work out heavily with weights, to the point of muscle exhaustion. And I'm quite sure I pushed myself into a rabdomiolisis state many times, making myself physically ill by consistently working out to muscle failure.. while also feeling similarly poisoned back then, afterwards.

But again, this is my interpretation based upon my limited medical knowledge. And there are no doctors who are willing to entertain anything I say in regards to this. So hopefully, I am not clouding the issue for you.

Either way, the tart cherry juice sleep remedy helped me achieve restful sleep immediately, and for the first time in seven years. The only drawback for me is that it sometimes creates intestinal bloating.

H

 

[PatJ]

1) Sleep: non-restorative sleep --> waking up extremely tired and feeling weak (feels like I am poisoned somehow). I can't sleep for more than 7 hours without waking up muliple times afterwards. Somehow I feel like sleep is a really big problem overall.

Poor and/or unrefreshing sleep is a common problem with ME/CFS. Some people with ME/CFS find that they feel better with less sleep. For me it's a weird and unpredictable mix. Sometimes I can get four hours sleep and feel better than if I had eight hours of sleep. Other times I wake after a few hours, lie awake for hours feeling OK, then fall asleep again; then I wake up feeling terrible.

One thing that I noticed years ago was that my blood sugar was dropping early in the morning (4am at the time). Trying to sleep through it left me feeling terrible for the rest of the day. By shifting my sleep and wake times (sleep at 7, get up at 3:30am, eat by 3:45 before my blood sugar dropped) I was able to keep my blood sugar stable and felt better during the day.

I also rely on melatonin and either Dr. Christopher's Relax-eze, or a mix of 50:50 THC:CBD oil for better sleep at night. Also, see my signature line on this post for a link to my blog post about what I've done for better sleep.

2) PEM: That's basically responsible for the huge impact of the disease in my opinion and I don't know how to deal with it other than pacing. The trigger is physical activity for sure but also emotional.

Hip has a list of potential PEM shielders and relievers that some people have found useful.

) Stomach issues: SIBO, feeling full and strange in the belly all the time.

Many people with ME/CFS have low stomach acid. This can lead to SIBO. It can also cause a feeling of fullness, especially after meals with protein since stomach acid is required to break down protein.

I rely on betaine HCl with pepsin due to my low stomach acid. I've found that I need one 650mg capsule for every 4-6 grams of protein in a meal.

When I first started betaine supplementation I needed to use a single 350mg tablet and increase the dose every few days to avoid stomach discomfort. I think my stomach lining had thinned due to lack of stomach acid and needed to thicken to tolerate higher doses of betaine HCl.

One other tip: magnesium is an essential supplement for many people with ME/CFS. For me it makes the difference between having so little energy that I feel utterly exhausted vs. having enough energy to do essential things around the house (with appropriate pacing to avoid overdoing it). I use powdered magnesium glycinate and/or magnesium malate.