My gigantic story going back to 1996, please read this, treatment plan included!

[Viala]

By the way, high dose thiamine and benfotiamine didn't cause remission in my case.

I took up to 1200mg of thiamine daily and it didn't change my energy levels, it did some typical thiamine thing though, so it was still worth a try. I may test other types of this vitamin in the future, as they may work differently.

There's a lot of information about thiamine in CFS so it is highly possible there is something to it, it may be that one missing part for some people. It would be nice to have it fixed like that.

 

[YippeeKi YOW !!]

Times seem to have changed. I remember a time when explaining the forum rules to other members wasn't allowed here. Only by moderators and reporting.

I didn't explain the rules, I posted a link to them. And while lecturing other members about the rules is one thing, trying to save them (and the mod's time) from an unintentional breach by posting a link to the rules for them is a fish of a whole different color.

 

[pamojja]

No need for defence. I like it better this way. Less disempowering than before.

Thanks for making me aware.

 

[YippeeKi YOW !!]

No need for defence.

Not defending. Explaining.

I like it better this way. Less disempowering than before.

I agree. It's sometimes feels infantilizing to not be allowed to stand our ground or follow our conscience.

I understand the need, having experienced some of the out of control full-frontal attacks that some members here feel entitled to dish out, but ...............

Thanks for making me aware.

Don't go by me. The mods and I have a long acquaintance, what with one thing and another

 

[beatsmyth]

Today I went up to 200mg of Benfo on day 5, about 2 hours ago, and will report i f any changes for the better or worse.

As someone who has battled CFS/Fibro for over a decade now, this is one of those posts where you try something that makes you better for 5 days, and you post it here to the community, and then eventually things go back to normal. I've tried so many things that made me temporarily better and wanted to shout it from the roof tops (including your specific protocol) only to return to baseline after a month or two.

Luckily I have gone through various therapies to address my own CFS that did permanently improve me and im back working full time and close to 80-90% recovered. This included low dose 1 year antibiotics to address mycoplasma infection that attaches to your nervous system and then your immune system attacks and makes holes in the myelin sheath. Then fixing the sheath with metformin, along with a number of peptides I take 2-3 times a week for maintenance, hydrogen gas infused water, methylin blue low dose, liposomal Vit C, b complex shots, multi-vitmain, Apple cider vinegar water, Turmeric with Juniper berry tea for anti-inflammatory, and a few other things. All of this works in a synergy to keep me at that 80-90% success rate, and I have found something new I am still testing that is amazing, but I want to give it 6 months before sharing it here.

And that's my last point, I found something truly amazing that helps with cognitive effects of CFS, and I am still waiting to test it for 6 months or more before posting a report on it here to the community, not a 5 day test.

 

[Violeta]

If we post what we're doing as we do it, sometimes other helpful people will come along and add in some good advice. There is no lack of space on the internet, there is plenty of room for sharing as we go along.

 

[YippeeKi YOW !!]

As someone who has battled CFS/Fibro for over a decade now, this is one of those posts where you try something that makes you better for 5 days, and you post it here to the community, and then eventually things go back to normal. I've tried so many things that made me temporarily better and wanted to shout it from the roof tops (including your specific protocol) only to return to baseline after a month or two.

As you spend more time browsing thru these threads, you'll find that this is an old tune, and we've all whistled, hummed, sung, and danced to it.

So you're in the right place.

Every so often, like clockwork, some well-intended, well-meaning messiah, brimming with good fellowship and The Good News, comes here to post their TOTAL, COMPLETE, ABSOLUTE, UNCONTESTED, HOLY GRAIL CURE FOR M.E. And is baffled by the unenthusiastic response. Then they get angry. And hurt.

It's old news to most of us, the 'cure' that, like you said, works for days, weeks, even months ..... before petering out completely, hopelessly, never to work again .... and to make it worse, just cause it works for you, doesnt mean that'll it'll work for me or that other guy or anyone else. That's the baffling nature of this pissy little pig-butt of an illness ....

So welcome to the party. You'll find friends and info here, and ways to get better. And the occasional ..... uh ..... cure .... fix .... whatever ....

 

[hapl808]

This included low dose 1 year antibiotics to address mycoplasma infection that attaches to your nervous system and then your immune system attacks and makes holes in the myelin sheath. Then fixing the sheath with metformin, along with a number of peptides I take 2-3 times a week for maintenance, hydrogen gas infused water, methylin blue low dose, liposomal Vit C, b complex shots, multi-vitmain, Apple cider vinegar water, Turmeric with Juniper berry tea for anti-inflammatory, and a few other things.

How did you find the antibiotic for that and the treatment progression? I've struggled with mostly declining function for about 25 years. Had a few years where things improved after some extended antibiotic treatments (mostly doxy or zithro), and have run through various peptides, supplements, and all the other random stuff.

 

[Viala]

I wonder if anyone who cured CFS got significantly better within a few days right after starting to take something new and never had any relapses. From what I see the things that work usually take some time so the body can heal, I've seen it in my own remissions as well, but I am curious maybe there are some people who found a quick permanent fix. That ever happened?

 

[Violeta]

How did you find the antibiotic for that and the treatment progression? I've struggled with mostly declining function for about 25 years. Had a few years where things improved after some extended antibiotic treatments (mostly doxy or zithro), and have run through various peptides, supplements, and all the other random stuff.

Roadback.org has a list of doctors that treat autoimmune diseases with antibiotics, if you are interested. The website is specifically for rheumatic diseases, but I imagine that it might work for ME/CFS.
https://www.roadback.org/faqs/

 

[hapl808]

I wonder if anyone who cured CFS got significantly better within a few days right after starting to take something new and never had any relapses. From what I see the things that work usually take some time so the body can heal, I've seen it in my own remissions as well, but I am curious maybe there are some people who found a quick permanent fix. That ever happened?

Supposedly Goldstein's treatments would often give immediate relief or remission and often lost for months or years, although he said he often had to switch medications once they lost efficacy. I think a few people here saw him back in those days.

 

[Viala]

Supposedly Goldstein's treatments would often give immediate relief or remission and often lost for months or years, although he said he often had to switch medications once they lost efficacy. I think a few people here saw him back in those days.

I see there is a thread about Goldstein's treatments here:
https://forums.phoenixrising.me/thr...remission-me-cfs-treatments.34516/post-533495

These quotes are particularly interesting:

Since the onset of this illness can be very sudden (you can see my story here), wouldn't it be possible that a remission could be very sudden as well? Dr. Goldstein seems to have demonstrated this thousands of times.

I mentioned in that story that my last relapse 16 years ago took place in a period of about two seconds. In that time, I went from feeling completely healthy to feeling very sick all throughout my body. There's only one thing that travels that fast through the body, and that's nerve impulses. The basis of Dr. Goldstein's theory was that one or more neural networks in the brain were not working properly in this illness, and that these neural networks could be reset with the correct medications.

One observation: given that your ME/CFS went into full remission with dramatic speed after a single dose of isosorbide dinitrate, without requiring any further doses, it seems quite likely that your ME/CFS was being maintained by the brain getting locked into a disease state that was a self-perpetuating.

Taking the isosorbide dinitrate then knocked your brain out of this particular self-perpetuating state of equilibrium, when then allowed your brain to settle back into its normal healthy equilibrium state. Once this healthy equilibrium state was achieved from a single isosorbide dinitrate dose, you no longer needed any further doses, because you brain had now settled back into its self-maintaining state of normal health.

It makes sense that CFS could be a switch type disease. That would explain why for example I woke up once early in the morning feeling completely normal and cured, well, for about two hours. Goldstein's treatment drugs may flip this switch, for some permanently. Then there is a whole bunch of supplements like thiamine that could create a similar effect and they may work for a while only because something else is being depleted, unless they are the one thing that was missing.

 

[TexRob]

Most people do not take zinc on an empty stomach. Such advice is potentially harming. Sure, you might absorb 5% more of it if you do it on an empty stomach, but zinc has never been known to be one of the few supplements that should be taken on an empty stomach. The risk of stomach upset by taking it on an empty stomach is simply not worth it.

Hmm. I am not claiming otherwise, but this is a pretty mainstream product that says it's OK. Is it possible that this form is in a form that makes it so it's not harsh on the stomach, due to how it's delivered?

https://www.amazon.com/Gummy-Natures-Bounty-Immune-Support/dp/B08HPDF5JJ
All that said, I would say my weird head twitch has gotten worse as I've restored my thiamine deficiency. I address it that way, because so many systems are functioning again, it's the best way to convey the whole body aspect that is going on.

I realized something today. I have been getting up like clockwork at around 8:30am each morning, and I thought it was because I was fully rested. I am, for the most part, but today I had a little gastric trouble, which has been a thing as it starts working again (but it's healthy movement), and so I had a movement around 8am, and then went back to sleep until noon today. I woke up and after a few minutes realized I felt incredibly rested, and the twitch was gone for the better part of the day. Now 8pm, it is doing it a little, but not bad. It made me realize that I might not be waking up because I'm fully rested so much as my brain gets very active about what I'm going to do that day, and I forgot what that was like, it's been so long. I could write a list of "100 things you won't realize were gone until they start to come back with CFS" and probably run over 100.

I took up to 1200mg of thiamine daily and it didn't change my energy levels, it did some typical thiamine thing though, so it was still worth a try. I may test other types of this vitamin in the future, as they may work differently.

There's a lot of information about thiamine in CFS so it is highly possible there is something to it, it may be that one missing part for some people. It would be nice to have it fixed like that.

I've linked to EONutrition and talked about Elliot a lot. I think he is the key to all of this, but it's really HIS understanding and implementation of the work of this doctor, and his book:

https://www.amazon.com/Thiamine-Deficiency-Disease-Dysautonomia-Malnutrition/dp/0128103876/
The big takeaway if you watch all of Elliot's Thiamine videos, is that he believes there is a dysfunction that happens that makes TTFD the ONLY form of Thiamine that can and will work for some/most people at a certain point.

I took a break from this forum, but I've worked up to 300mg of TTFD every morning with my other already mentioned supplements, and continued a whole foods, unprocessed diet. I'm feeling signs of changes I haven't seen since 2012 (my liver transplant), definitely 2018.

I've reached out to Elliot and while he has not responded, his site says he's not taking patients. Perhaps a fellow of his is, and I asked about them, and am awaiting a response. I have scheduled to meet with a functional medicine doctor in my area. I'll be disappointed if they aren't familiar with TTFD, because that + nutrition is really where I want guidance in this phase, as I think it's going to be months and months for me.

Anyhow, as I said, I took a break from the forum, when I am crashed and low, I get very angry. I was bullied a lot as a kid, and I now go nuts on bullies, and when I am feeling poor, it makes me want to just rage at people. When your nervous system is basically shut down, that fight or flight is real, and sometimes it makes me want to fight.

I'm out of that crash, by following Elliot's guide and referencing this chart of his:

I reccomend the whole video, but I used that pink table as a guide to get out of the crash, but never quit my TTFD, but I did quit Benfothiamine during that crash. I tried an extra 200mg of TTFD one evening with dinner, and that made me feel paradoxical effects again, mainly in head pain, and kind of head confusion that comes with a bad headache. I have just stayed with the 300mg with my first meal, and things have been going well.

 

[TexRob]

Oh, and as far as it being premature, perhaps it was/is, but I believe I talked about it in this thread already. I have this frustrating "gift" of seeing patterns early, very early, it made IT very easy for me. This also manifests in being able to read facial expressions and body language to a level that makes it hard to hide stuff from me, or to lie to me. Basically my life is like that dumb Mel Gibson movie where he knows what everyone is thinking.

The point I am making is, this feels like an epidemic that Elliot and a few others have realized, and from the information I have gathered I fully agree. I think people get tripped up on the fact that TTFD is a BIG part of the specific long term outcomes I and others are having. I got frustrated because I often see these patterns throughout my life, and then years later people come on board. I feel that way here, I just want you all to try this, and then when you do it for months and you can come and say, "TexRob, you sir are a liar", I will eat humble pie.

 

[TexRob]

Last thing, I don't want to sit here and list every single thing that has improved, so if someone has questions, I can answer them. I'll give a freebie since I just love putting myself out there for your benefit. My libido has been kind of obnoxious (active) when not in a crash, which isn't something I've experienced in years.

I also find myself satiated by food, and MOST of the time I don't get tired afterwards, but energized. I find myself wanting healthy stuff and am finding the whole foods thing to be easy combined with the nutrients. Things definitely feel "right" in those regards.

 

[TexRob]

Just keeping a record of stuff. I think today is day 22 since I began and have not quit treatment. One major crash that was documented here.

Today I removed my Magnesum and Potassium Gluconate, and swapped them for Potassium Citrate, and Magnesium CitraMate (citate and malate combo). Both are from Thorne. I'm hoping this helps with my still slower urination, and perhaps the head stuff. I again tried to sleep in today, and could not, brain was ready to go and excited for the day. Not even an hour post morning meal and vitamins and feeling more energetic than prior, again.

 

[TexRob]

A month and a few days in and I've had some hiccups. Much like some people not so smoothly put it previously.

That said, even with the down cycle and gastric problems, I am still sweating, I still have temperature regulation, I still get watery eyes, hiccup, burp, etc. I think why this is so hard is we have like 20 conditions as a result of this. I'm going down the biofilm disruptor path now, because I can't figure out why else my body stops absorbing water, nutrients, etc. I have no desire to do Xifaxin again, unless my doctors are willing to do a fecal transplant afterwards.

The way my body stops absorbing is so frustrating, but there are signs it's still getting some of what it needs compared to before treatment. I find that even while I am struggling, my reserves are building. It's just really hard when it feels like a knife in my stomach and back.

I ordered Kirkman Biofillm Defense as a way to try and help. In the meantime I started taking apple cider vinegar before my first meal today.

 

[Cecco]

I think I now know why Dr. Eric Berg always recommends a keto diet. Because it does not contain carbs that are contaminated with glyphosate.

“You need thiamine for augmenting your immune system. If you don’t have a lot of thiamine, you’re not going to be able to generate a healthy immune response. That’s why it’s a part of septic protocols. If you’re wrecking it with glyphosate exposure that’s disrupting the shikimate pathway in your gut microflora, you’ve got a huge problem.”

https://childrenshealthdefense.org/...oxic-legacy-glyphosate-destroying-our-health/

So if you consume glyphosate you wreck your shikimate pathway which then results in the B1 deficiency. This then also results in a wrecked immune system which ends in chronic infections aka ME/CFS.

From a spiritual perspective you could come to the conclusion that it's all a big plan because bad entities need negative energy to thrive and who could provide better energy then people who suffer their whole life.

 

[Jackb23]

Where is the suicide risk checklist?

 

[TexRob]

Where is the suicide risk checklist?

https://phoenixrising.me/myalgic-en...igue-syndrome/lily-chu-eleanor-stein-suicide/