List of ME/CFS Recovery and Improvement Stories

[godlovesatrier]

Ah ok so it can take awhile then. Thanks for the info.

 

[godlovesatrier]

@BrightCandle how are you doing now? Still maintained your gains on the protocol? I am asking more so that those returning here have an idea how we are both getting on.

I am currently doing experiments to prove that the protocol is driving up my ebv titers. I am semi convinced it's doing this but I won't know for sure for another few weeks. I believe the beta glucans and egcg might be involved in ramping up the immune system which over taxes the body and ebv just loves that sort of environment. However I can't prove this yet but it makes me wonder if that's why patients keep rotating spironolactone to compensate for the protocols issues around ebv titers going up. For me the protocol is still the best thing I've ever done for my ME I would say in the last 2 years. I am maintaining 70% I would say, even with my recent infection, possibly ebv flare and such. Time will tell if this is not sustainable though. I should cavaet this by saying that I was perfectly fine, and at 80% prior to the covid jab 3rd June, whereby I had a deterioration afterward that I still haven't come out of. So I am fairly convinced the covid jab weakened my immune system enough for viruses to replicate.

 

[BrightCandle]

@BrightCandle how are you doing now? Still maintained your gains on the protocol? I am asking more so that those returning here have an idea how we are both getting on.

....

Improving slowly, 80-85% hummingbird scale.

I have no obvious limit that I can find currently although still gradually working upwards. Today I did 1.5 hours of resistance training including some supersets and walked for an hour. I am waking and sleeping at the right times and can do preplanned activities and my memory is functioning fairly normally. I can now utilise normal exercise range heart rate for an extended period without fatigue but I haven't tried pushing to max heart rate or anything super hard yet, muscles are still needing to recover and build somewhat I have some clear weaknesses from not walking much for 2 years. Fitness and heart rate rapidly improving, weight is reducing a little and muscle is building, craving protein like mad. Pain in the body is gone, headaches are drastically reduced and never in the way anymore, mild at worst and not daily anymore. I still have a little vision weirdness effect when those headaches occur but its less problematic.

Still have bad constipation but its my only remaining big symptom, all the pain all the misery is gone. Can't seem to reduce the drugs for this yet, carrying on with full dose but I can tell its changing. Before this my poop was dry and it barely smelt of anything, its more "biologically active " and it is a lot more normal texture its just not getting enough water in the stools naturally yet, I think its improving but not easy to quantify.

The protocol itself is definitely a treatment not a cure so far, I missed a dose the other day and I noticed a few hours later, those powders and pills are essential now and need to be regular and spaced correctly. In terms of protocol I tried 3.31 last week but it went badly coinciding with a reduction in 5HTP, I turned hulk levels of angry. Went back to 3.2 with the increased EGCG, reduced monohydrate and forskolin. I am gradually coming off my 2 prescription meds for the continuous migraines, Candesartan I am at half dose (waiting for BP to stabalise before I quarter it) and I haven't used my Electriptan in months. Good chance I will be off all the prescription meds in a few weeks and I am not off them as I remain cautious and am making slow changes.

Going well, not normal but slowly but surely continuing to improve no signs of a snap back or crash or anything like that and its day 50 or so. I could work full time and am starting to consider it. I need to go further and harder and ensure all is just working as it should but so far I haven't pushed hard as if I do crash I want to do so a little not a lot. Haven't felt like this in 7 years, feel good if not yet quite perfect.

 

[Hip]

@BrightCandle you might like to post your experiences with Josh's 3.2 protocol on a new thread. The mods are allowing members to make posts and new threads on their experiences with Josh's protocols.

It would be a bit off-topic to focus on lengthy discussion about Josh's protocols on this thread, so a new thread might be a good idea.

You may like to detail exactly what supplements and doses you are taking, and how often you are taking them, so that the info is preserved. If you continue to remain in your improved state (I hope you do, but often ME/CFS treatments stop working), then I will add your story to the first post in this thread.

 

[BrightCandle]

...

It remains classified as a medical trial on Phoenix Rising so I can not do that. I am allowed to say how I am responding to it but not what it is.

 

[Hip]

It remains classified as a medical trial on Phoenix Rising so I can not do that. I am allowed to say how I am responding to it but not what it is.

There is nothing in the forum rules which prevents you from posting what protocol you are following or what drugs or supplements you are taking. The protocol was posted earlier in this thread.

If you don't want to start a thread, you can post on an existing Josh Protocol thread. You might also like to post about the people who had adverse effects on the protocol; I think there were a couple of people, and it would be good to detail the adverse effects as well as the benefits.

 

[chelsea49]

Prebiotics are food which feed friendly bacteria in the gut, but which bad bacteria cannot eat.

Not sure if mentioned or not but this statement isn't true prebiotics like Inulin and FOS do feed bad bacteria.

 

[Woof!]

Excellent topic and interesting list, Hip.

What took me from SEVERE to MODERATE is strict avoidance of dietary and environmental triggers. No drugs needed, simply a bit of experimentation, a willingness to let go of fragrances & certain foods and a willingness to make a few lifestyle changes.

Has anyone on PR ever done a survey on triggers that - on an individual basis - bring about or promote symptoms of ME/CFS or FM? Some of my triggers: dustmites, starches (in food or environment), grains except oatmeal, cauliflower, beans, potatoes, smoke, mold/mildrew, talc, apples and pineapple (and about 2 dozen other things that I'm happy to live without, since I feel so much better). I'd be happy to put together such a survey if no one has already done so. Same with a survey on co-morbidities...such an interesting topic.

 

[godlovesatrier]

Just to add. When I went on my no dairy no gluten no caffiene no alcohol and no processed food (within reason) diet and then removed all fragrances a few years later inc anything that might flare mcas (pretty confident I don't have it thankfully!) I certainly saw improvement over the course of a month or two. Over time though my baseline has probably been more heavily eroded by slightly higher emotional demands, slightly higher exertional demands and seemingly seasonal vaccines and possibly even worsened pollen seasons.

Before 2019 with it's seemingly very bad pollen season I remember having a better baseline. Same with the covid vaccines of 2021.

As for the survey @Dr.Lynne I'm not aware of one. But if you want to go to the time of compiling it and publishing it on a new thread that would be great. Always interested to see the results of polls like that.

 

[Wishful]

On my last shopping trip, I was lamenting how limited my food choices were. I've had to avoid all too many food categories or families. So sad.

You listed cauliflower and potatoes. Did you not also have troubles with other foods in those families? I had to avoid the whole brassica family due to their goitrogenic nature. They can be safe if cooked long enough, but then they're disgusting mush. I had to avoid the nightshade family too, since solanine and tomatine both triggered symptoms.

Food sensitivities do change over time. I'm not as sensitive to potatoes or tomatoes now, but since last winter I've had to give up most protein-rich foods due to proline sensitivity.

 

[Woof!]

You listed cauliflower and potatoes. Did you not also have troubles with other foods in those families?

I can't eat broccoli either, sad to say (I really love both cauliflower & broccoli, too, sigh). Stay tuned for the rest of my list (I'll be the first one to take my new survey - grin)...

 

[Woof!]

On my last shopping trip, I was lamenting how limited my food choices were. I've had to avoid all too many food categories or families. So sad.

I have found that the best way to make the same ingredients taste different and oh-so-tasty is to vary the spice blends I use (all without starches used as anti-caking ingredients). My go-to spice website is: https://spicesandtease.com/

Whenever I'm in NY City, I always stop at their booth in Grand Central Terminal's market. When I can't get to the city (I'm in North Carolina now), I order online. For omelets, I love their "omelet/potato" blend, and for veggies their "Kebob" blend is really addictive (in a good way). Good spices take good food and good ingredients and elevate them to a whole 'nother level, and they're a godsend to those of us on vastly restrictive diets. (BTW, Spices and Tease sent me their Kebob blend recently as a little add-on gift when I ordered 2 tins of something else. Good marketing on their part, 'cause now I'm in love with it, too).

 

[Woof!]

Whoops! I just realized how off-topic we've gotten. I promise to put together my survey as quick as I can. When I do, I'll start a new thread so we can talk lots about all our creepy triggers - grin!

 

[SpiralOut]

C60 Supplement

C60 (buckminsterfullerene) is a molecule comprising 60 carbon atoms that are arranged into a spherical shape. C60 targets the mitochondria where it acts as a non-perishable resuable antioxidant. 1

• ME/CFS patient — with moderate ME/CFS makes at least a 1-level gain and goes back to work as a result of taking a C60 supplement.

There's a lot of history (and not some little drama) you can read over on longecity with regard to C60, but this should suffice: https://www.longecity.org/forum/top...renes-in-olive-oil-to-extend-life-in-rodents/
Cliffs: It remains an intriguing substance in theory but the reality is that the Baati study has not been replicated, and worse, all the stuff on the market has not been prepared so as to avoid adulteration with light, and as such may be carcinogenic (as shown in rodents).

 

[junkcrap50]

There's a lot of history (and not some little drama) you can read over on longecity with regard to C60, but this should suffice: https://www.longecity.org/forum/top...renes-in-olive-oil-to-extend-life-in-rodents/
Cliffs: It remains an intriguing substance in theory but the reality is that the Baati study has not been replicated, and worse, all the stuff on the market has not been prepared so as to avoid adulteration with light, and as such may be carcinogenic (as shown in rodents).

Yes. Agree 100%. However, there are several anecdotes of it having good success, at least short term.

 

[Nuno]

This is, hands down, top 3 posts in PR forums history.

@Hip , do you know where does one get Oral Interferon Alfa? Or suppositories? I'm interested in trying this stuff, to see if it is of any benefit, but can't seem to find anything online. And neither the Linda's story link (in her website) is working correctly.

Thx in advance

 

[Hip]

do you know where does one get Oral Interferon Alfa? Or suppositories?

Suppository suppliers listed in this post.

 

[Nuno]

Suppository suppliers listed in this post.

Thx, do you know if anyone has tried this before in the forums? Or am I gonna be the first cfs person to try it?

 

[Hip]

Thx, do you know if anyone has tried this before in the forums? Or am I gonna be the first cfs person to try it?

I tried low-dose oral interferon for about a week, but got increased mental health symptoms, so stopped. I don't think anyone else has tried it. My method of administration detailed in this post.

 

[Nuno]

I tried low-dose oral interferon for about a week, but got increased mental health symptoms, so stopped. I don't think anyone else has tried it. My method of administration detailed in this post.

Interesting, what about intra nasal or IFN gamma that they also sell? Have you ever tried that or know someone who has?