treatment help

[dylemmaz]

hi everyone. looking for some treatment ideas. have had a good amount of blood work done but the only things that have come up are high mean platelet volume, elevated interlueken 2, 10, and TNF-a, very elevated ebv, cmv, and hhv6 antibodies. haven’t been tested for enterovirus infections but i suspect i’m positive.

looking for ideas of things to bring up to my doctor. so far i’ve tried, fenofibrate as anti inflammatory, celebrex, low dose abilify, low dose naltrexone, propronolol and metoprolol, mestinon, b12 and glutathione injections, high dose thiamine (+ hundreds of other supplements), fludrocortisone, and valcyte for 4 months.

i have equilibrant and i’m going to try that. but i’m looking for other treatment ideas. i’m seeing a cfs specialist so she is open to a lot of things, but usually i come in with some ideas. i really don’t know what is worth trying outside of the treatments i’ve tried already. low dose abilify has helped some, same with mestinon. everything else i’ve tried has been mostly negligible. high dose thiamine maybe helps some, as well as celebrex.

i’ve been diagnosed with pots and cfs. extreme fatigue and pem are really the only symptoms i deal with, aside from really bad pots (manageable with mestinon and metoprolol) and brain fog occasionally.

thanks for any ideas

 

[Wishful]

Cumin!

My suggestion: experiment with things from your grocery store. I've had more success there than from prescription pharmaceuticals. If you run out of things to try there, visit ethnic grocery stores. You admit that most of your fancy theoretically-chosen pharmaceuticals did nothing. I doubt that any expert in ME would list cumin or lamb chops as a potential treatment, but they did work really well for me. So, broaden your search. There's no way to prove that guava-flavoured jellybeans (lots of complex chemicals) can't be an effective treatment.

Jellybeans (and lamb chops) also taste better than those nasty drugs.

 

[YippeeKi YOW !!]

@dylemmaz

New Diagnosis and New Docs: Autoimmune Encephalitis, SFN and a Neuroimmunologist
https://forums.phoenixrising.me/thr...cephalitis-sfn-and-a-neuroimmunologist.83955/

The enormous list of the testing @Hoosierfans has done down the years, along with the ones the new Dr is running, is Post #10, but the whole thread is helpful.

Give it a browse, yes? Might be something in there you find useful ....

 

[YippeeKi YOW !!]

@dylemmaz
PS .... I agree with @Wishful .... I've had no help at all, in fact the opposite, from prescription meds, but enormous help from sources no one would think worth a second look.

We're all different, so lamb chops (one of my favorites) and guava jellybeans may not be your cuppa, but who knows what unexpected thingamabob will be?

 

[Martin aka paused||M.E.]

hi everyone. looking for some treatment ideas. have had a good amount of blood work done but the only things that have come up are high mean platelet volume, elevated interlueken 2, 10, and TNF-a, very elevated ebv, cmv, and hhv6 antibodies. haven’t been tested for enterovirus infections but i suspect i’m positive.

looking for ideas of things to bring up to my doctor. so far i’ve tried, fenofibrate as anti inflammatory, celebrex, low dose abilify, low dose naltrexone, propronolol and metoprolol, mestinon, b12 and glutathione injections, high dose thiamine (+ hundreds of other supplements), fludrocortisone, and valcyte for 4 months.

i have equilibrant and i’m going to try that. but i’m looking for other treatment ideas. i’m seeing a cfs specialist so she is open to a lot of things, but usually i come in with some ideas. i really don’t know what is worth trying outside of the treatments i’ve tried already. low dose abilify has helped some, same with mestinon. everything else i’ve tried has been mostly negligible. high dose thiamine maybe helps some, as well as celebrex.

i’ve been diagnosed with pots and cfs. extreme fatigue and pem are really the only symptoms i deal with, aside from really bad pots (manageable with mestinon and metoprolol) and brain fog occasionally.

thanks for any ideas

Why have you stopped what works for you? Abilify and Mestinon?

Your results show me what I just read in Cort's new blog post about cytokines in LC. That we are so different... Exact the cytokines that are elevated for you are very down for me...

 

[dylemmaz]

Why have you stopped what works for you? Abilify and Mestinon?

i’m still on mestinon and abilify. in fact i’m on low dose naltrexone, metoprolol, and celebrex as well. they all help, but the ldn metoprolol and celebrex only minimally. mestinon helps avoid crashes. i missed two days worth of doses because insurance was being weird and i had my first crash in many months. but i need more help, my quality of life has only increased a little bit since including all of these

Your results show me what I just read in Cort's new blog post about cytokines in LC. That we are so different... Exact the cytokines that are elevated for you are very down for me...

that’s so strange. this disease, why does it have to be like that? it really makes me doubt patterson’s conclusion that all long haulers have about the same cytokine findings. especially because there seems to be no conclusive findings in cfs cytokine research. i would be surprised if in the end the trigger is what defines cfs subsets and not the uniqueness of every patients immune responses, genetic predispositions, microbiome, etc. guess it’s possible and i should keep an open mind about it

 

[Martin aka paused||M.E.]

i’m still on mestinon and abilify. in fact i’m on low dose naltrexone, metoprolol, and celebrex as well. they all help, but the ldn metoprolol and celebrex only minimally. mestinon helps avoid crashes. i missed two days worth of doses because insurance was being weird and i had my first crash in many months. but i need more help, my quality of life has only increased a little bit since including all of these

that’s so strange. this disease, why does it have to be like that? it really makes me doubt patterson’s conclusion that all long haulers have about the same cytokine findings. especially because there seems to be no conclusive findings in cfs cytokine research. i would be surprised if in the end the trigger is what defines cfs subsets and not the uniqueness of every patients immune responses, genetic predispositions, microbiome, etc. guess it’s possible and i should keep an open mind about it

I'm ill since 2013. I've seen these “wow”-findings way too often... And then disappear again. So I was absolutely not “heeey” when I read the article. And some posted that some already tried the drugs Patterson thinks to do the trick - without any effect.

 

[Wishful]

So I was absolutely not “heeey” when I read the article. And some posted that some already tried the drugs Patterson thinks to do the trick - without any effect.

That's the pattern I see too. There's a great sounding claim, and then nothing, or desperate excuses for why the treatments based on the hypothesis don't work.

I keep encountering discoveries that just increase the complexities of the human body and reveal how much is unknown.

I'm wondering whether more funding should go to trying to find treatments by accident, rather than trying to figure out why our bodies aren't working properly. Maybe there have been some PWME who have found effective treatments or even cures, but the few people they told didn't manage to pass it on to someone who could bring it forward for other PWME.

 

[Martin aka paused||M.E.]

That's the pattern I see too. There's a great sounding claim, and then nothing, or desperate excuses for why the treatments based on the hypothesis don't work.

I keep encountering discoveries that just increase the complexities of the human body and reveal how much is unknown.

I'm wondering whether more funding should go to trying to find treatments by accident, rather than trying to figure out why our bodies aren't working properly. Maybe there have been some PWME who have found effective treatments or even cures, but the few people they told didn't manage to pass it on to someone who could bring it forward for other PWME.

Another problem with this board is that many users don't take it seriously if someone says that he*she is in remission... Abilify was mentioned in 2017 here before Bonilla discovered it and it was not earlier than in 2020 when Whitney and me got good results that a thread was opened. And then I was attacked by many users. Some told me that I don't have ME bc Abilify helps me and so on.
And I think what Ron now does is trying to stumble across sth by planned accident. Of course, based upon his theory.

 

[Wishful]

Some told me that I don't have ME bc Abilify helps me and so on.

One problem is that ME seems to allow some patients to benefit from a treatment, but it's only a few who happen to have a specific set of factors. Cumin worked awesomely for me, and works to some degree for a few others, but doesn't seem to work for anyone else. Figuring out precisely what set of factors allowed it to work for me might be more difficult than figuring out ME itself. So, when I read that treatment x works really well for someone, it's not so much that I doubt the claim, it's that I just don't have much expectation that it will work for me (or more than a couple of people).

I'll get more excited when I read that a treatment has been working well for a significant percentage of other PWME. Still waiting for that ...

 

[Martin aka paused||M.E.]

One problem is that ME seems to allow some patients to benefit from a treatment, but it's only a few who happen to have a specific set of factors. Cumin worked awesomely for me, and works to some degree for a few others, but doesn't seem to work for anyone else. Figuring out precisely what set of factors allowed it to work for me might be more difficult than figuring out ME itself. So, when I read that treatment x works really well for someone, it's not so much that I doubt the claim, it's that I just don't have much expectation that it will work for me (or more than a couple of people).

I'll get more excited when I read that a treatment has been working well for a significant percentage of other PWME. Still waiting for that ...

We have the Bonilla study which was not good because it was not BPC but Ron will do a good one on Abilify. If he can reproduce the findings then it's a big amount of pwME.

Not to get excited and blaming other ppl or telling them they have another disease is sth different.

 

[J.G]

Another problem with this board is that many users don't take it seriously if someone says that he*she is in remission... Abilify was mentioned in 2017 here before Bonilla discovered it and it was not earlier than in 2020 when Whitney and me got good results that a thread was opened.

Years before that, even! In December 2012, @erist wrote of their experiences with low-dose Abilify:

"Recently, I decided to try a very low dose of Abilify (.5-1mg/day as opposed to "standard" a/d dose of 5mg/day or anti-psychotic dose of 30mg/day) as an augment to the (useless) SSRI I have been on for a number of years trying to get at the fatigue and the depression. [...] Overall it has been the first thing other than the Methylation Protocol that I have noticed an immediate effect from (both good and bad) and very similar effects as well -- more energy, more appetite, much easier time getting up in the morning but also a lot of restless agitation, the wired/tired feeling, a general feeling of vibrating internally, burning skin, etc. Certainly the only psych drug that has ever had a dramatic effect on any of my symptoms."

Their thread here: https://forums.phoenixrising.me/threads/abilify-and-energy.20815/

I think concern over what the claimed efficacy of certain drugs and supplements may or may not suggest about our illness plays a role in how patients respond to improvement and/or recovery stories posted by other pwME. As does, tragically but totally understandably, a degree of Stockholm Syndrome.

 

[heapsreal]

hi everyone. looking for some treatment ideas. have had a good amount of blood work done but the only things that have come up are high mean platelet volume, elevated interlueken 2, 10, and TNF-a, very elevated ebv, cmv, and hhv6 antibodies. haven’t been tested for enterovirus infections but i suspect i’m positive.

looking for ideas of things to bring up to my doctor. so far i’ve tried, fenofibrate as anti inflammatory, celebrex, low dose abilify, low dose naltrexone, propronolol and metoprolol, mestinon, b12 and glutathione injections, high dose thiamine (+ hundreds of other supplements), fludrocortisone, and valcyte for 4 months.

i have equilibrant and i’m going to try that. but i’m looking for other treatment ideas. i’m seeing a cfs specialist so she is open to a lot of things, but usually i come in with some ideas. i really don’t know what is worth trying outside of the treatments i’ve tried already. low dose abilify has helped some, same with mestinon. everything else i’ve tried has been mostly negligible. high dose thiamine maybe helps some, as well as celebrex.

i’ve been diagnosed with pots and cfs. extreme fatigue and pem are really the only symptoms i deal with, aside from really bad pots (manageable with mestinon and metoprolol) and brain fog occasionally.

thanks for any ideas

Id be jumping on antivirals. Start with something like famvir and if its not enough to hit hhv6 than consider valcyte. Antivirals are a long term treatment so can take months to improve.

 

[dylemmaz]

Id be jumping on antivirals. Start with something like famvir and if its not enough to hit hhv6 than consider valcyte. Antivirals are a long term treatment so can take months to improve.

took valcyte for 4 months with no improvement. ebv, cmv, and hhv6 were not my triggers i can confidently say. possible they are reactivated but i did get no benefit with valcyte and i was taking a pretty big dose for 4 months

 

[heapsreal]

took valcyte for 4 months with no improvement. ebv, cmv, and hhv6 were not my triggers i can confidently say. possible they are reactivated but i did get no benefit with valcyte and i was taking a pretty big dose for 4 months

Sounds fair enough. The only thing i can add is dr lerner found that many with high viral titres that didnt respond, he tested for lyme and mycoplasma etc which he found alot of in antiviral non responders and antibiotic treatment helped???

 

[dylemmaz]

Sounds fair enough. The only thing i can add is dr lerner found that many with high viral titres that didnt respond, he tested for lyme and mycoplasma etc which he found alot of in antiviral non responders and antibiotic treatment helped???

ive done extensive testing for lyme and co infections. negative for all. a bit hesitant of antibiotics unless i can confirm some infection because my gut problems are in remission and i really don’t want to live through that struggle again. thank you for the ideas

 

[heapsreal]

ive done extensive testing for lyme and co infections. negative for all. a bit hesitant of antibiotics unless i can confirm some infection because my gut problems are in remission and i really don’t want to live through that struggle again. thank you for the ideas

Thats cool, thought id ask. Im interested to see what else you find helpful.

 

[Learner1]

Sounds fair enough. The only thing i can add is dr lerner found that many with high viral titres that didnt respond, he tested for lyme and mycoplasma etc which he found alot of in antiviral non responders and antibiotic treatment helped???

Did you have quantitative PCR tests? On multiple occasions?

I wouldn't underestimate the power of antivirals. Valcyte was tremendously helpful for me @1.8g/day over 20 months the first time, But my HHV-6 which reactivated after my COVID vaccine does not seem to responding at the same dose, so my doctor recently added famvir at 3gva day, taken with the Valcyte. I wouldn't underestimate the destruction these viruses can cause, multiplying your problems.

 

[Breagjam]

Famvir and valacyclovir gave me GI tract problems, so unfortunately I had to stop them after about a month. I was disappointed I had side effects.

 

[Learner1]

Famvir and valacyclovir gave me GI tract problems, so unfortunately I had to stop them after about a month. I was disappointed I had side effects.

Many drugs have side effects. It is worth trying to understand what is causing the side effects and mitigate them rather than discontinuing the only drug that will help. Most of my GI side effects over time have been caused by mast cell activation, and taking mast cell stabilizers, like cromolyn sodium and quercetin, and antihistamines, like ketotifen have greatly helped mitigate them.