Anyone here that has been sick over 20 years been helped? By anything?

Strawberry

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I know being sick this many years gives me a slim chance of recovery (if any), but I'm curious if anyone has had anything that has benefited towards recovery? Even if only 10% recovery/improvement.

To anyone that responds, please mention how many years you have been ill.

Thanks in advance!
 

Stretched

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I’m PWCME ~30 years. It’s been progressive, slowly from a 3/10 to 8/10 (worse), now. I’ve tried most protocols
you read about on the forum(s) relative to drugs and supplements. Over the years I’ve arrived at a palliative
protocol which keeps me up and out of bed but a lot of sofa time; out of house and driving, slow walking ~20%.

My elixir is comprised of low doses of sertraline, Adderal, Valium and zolpidem. Regrettably, I developed peripheral neuropathy in my feet earlier this year. The nerve pain is intolerable without pain killer, oxycodone,
from an established pain clinic (MDs). Strange, but the systemic pain from ME still manifests while making my
nerve pain tolerable (around chest cavity and thoracic back area).

BTW, The anti-virals and anti-retrovirals, et al esoteric meds were expensive and only made me sicker.
 
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Strawberry

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Palliative protocol is about the closest I can come, also. It has kept me able to go to work. But now I can only do one big thing on the weekends. Either laundry (one load only, so mix darks and lights...) for two weeks, next weekend cooking meat for two weeks. But the good news about that is that I am not chronically sick any more! I was sick daily for 20 years with no break at all, but I could do a lot. So I still had a fairly active (and social) life, and raised my daughter myself. Now almost everyone has abandoned me as couch surfing isn't as fun as hiking and camping. But I'm sick only about 50% of the time now. WOOT!

I'm curious how you manage the adderal? My best friend takes that and I've joked she should give me some, but I'm afraid I would overdo and crash hard. Are you able to manage your activity while on adderal?

Oh, and I'm 25 years ME... We should form a club. :sleep:
 

Wishful

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Not quite 20 years yet for me (March 2001), but yes. T2 or iodine, one dose every 21 days, seems to reset something, keeping me at a lower level of severity. Sometimes I start feeling worse for no apparent reason, and check my journal, and yes, it was 21 or 22 days since my last T2/iodine boost. Sadly, no one else has reported it working for them. :(

The other thing I accidentally discovered was cumin (Cuminum cyminum), which very effectively blocks my physically-induce PEM. It makes a big difference in my quality of life (can do stuff without feeling lousy the next day). Wonderful stuff...for me, but again, doesn't seem to work for anyone else. :(

LDN worked well for me for a couple of years. It blocked the perceived muscle aches that prevented me from enjoying activities. After a couple of years of that, I no longer had the aches (except on rare occasions). While it worked, it qualified as a major quality of life improvement.

Also, I don't think duration of ME has an effect on the possibility of full recovery. I think that if someone discovered the proper drug, we could switch back to the fully healthy state pretty much immediately. ME seems to be an on/off state switch.
 

Strawberry

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Cumin works for me! But it is only a mental stimulator, not a physical one. I hate the taste, too. So sometimes I gag down some hoping it will help, but it doesn't.

LDN also worked great for me. For a few weeks... I was feeling so good I went into stores shopping! Then I crashed super hard, and it doesn't work anymore. I finally quit it a few weeks ago until I can talk to Dr K about it.

I eat lots of seaweed snacks, so I'm not sure if iodine would do much for me. Might be worth looking into though.
 

Stretched

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I'm curious how you manage the adderal? My best friend takes that and I've joked she should give me some, but I'm afraid I would overdo and crash hard. Are you able to manage your activity while on adderal?
I took it ~25 years on and off, up to 30mg-40mg daily. I’m back on at 10mg 2 times a day. No problem for me whatsoever at these doses. I don’t even notice it coming on. It’s calming and soothing, allowing for concentration. My only concern is to not overdo the ability it affords. Larger doses make me feel like I can study anything - not, or PEM! I don’t use extended release due to sleep. Last dose about 5pm. Most people like it for cognitive clarity but doctors can be reticent to rx it. If you want it I suggest digging up some credible research or
testimonials which validate its use in MECFS.
 

Strawberry

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I will have to keep that in mind, although my brain fog has cleared with MCAS meds. My memory still sucks, but no where near as bad. It's my body that just can NOT be upright for long. And tires so quickly.
 

percyval577

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on top of a manganese restriction it´s this, but don´t laugh. Sip for sip, in this order:


(VitC) -- juice from a lemon in say 0.8 l water (straw) -- a drop of vinegar in 0.4 l water -- 566 IU Vit D in 0.4 l water

Instead of lemon I use also cocoa (baking one) in water. In fact, to do continuously the lemon thing (and it´s sipwise over quit some time the day) might be bad, as it is a chelator -. Well, similar things might go for the other stuff as well, side effects of VitD are almost not known, though kidney stones have been looked at -

I would make sure to avoid bad influences when doing this regime, otherwise one might get worse.


Another surprisingly good effect is to drink from VitD and then from black tea, whereas I can´t drink black tea without having drunken a sip of VitD before.


Helpful may be sufficient unsatisfied fatty acids and some proteins.

The theory behind this were that the triggers simply did a disruption of certain structures, and this fairly unspecific stuff would help to rebuild it (thereby possibly influencing other things as well -). An order should be crucial here.
 
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Wishful

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I eat lots of seaweed snacks, so I'm not sure if iodine would do much for me. Might be worth looking into though.
For me, what my body seems to need is an abrupt spike in T2. Taking it daily made it stop working, probably because my thyroid gland adjusted to the supplemented level. What got me onto T2 was taking a multivitamin tablet which triggered a temporary remission. Experimenting found that it was the iodine. When T4 and T3 didn't do anything, I checked for whatever else iodine does in the body and found T2. The first dose of that also triggered a remission. Much more experimentation led to the 'one dose of T2 or iodine every days' regime.

So, if you were lucky enough to share my response to abrupt doses of iodine, eating seaweed regularly would prevent the abrupt dose response. My response might be unique to me though: genetics or whatever.
 

Wishful

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BTW, @Strawberry my post wasn't intended as a recommendation of what would work for you. We all seem to respond differently to treatments, so recommendations are only slightly better than trying things at random. My answer was that yes, it is possible for PWME to find treatments that work for them. It just takes a lot of experimenting, good observation skills (to notice that something is actually helping), and most of all: lots of luck. It's kind of like a lottery: a very small chance to win, but it is possible, and if you never buy tickets, you're guaranteed to never win.

So, keep trying things and hoping to notice something working. Also keep in mind that ME does seem to be reversible, rather than permanent degradation, so 20+ years without even a minor win in the treatment lottery doesn't mean you won't win on the next ticket. Stay optimistic. :hug:
 

Tammy

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CFS since 1996 .........so 23 yrs. Yes, I've been helped by following a natural anti-viral program and other supplements both recommended by Anthony William.
 

PatJ

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I have a ways to go before I hit the twenty year mark in 2023 but there are things I've found in the last few years that help. As for my current state, I'm bedbound for much of the day due to OI but have regular periods where I can be upright for 45-60 minutes.

I'm curious if anyone has had anything that has benefited towards recovery? Even if only 10% recovery/improvement.
It's my body that just can NOT be upright for long. And tires so quickly.
If you have low BP and/or OI (such as NMH with falling BP or narrowing pulse-pressure) then it can be hard to stay upright. Cayenne has helped me to stay upright longer. Three times per day I take 1/2 teaspoon in 1/2 cup of water and then chase with cold water. I had to start with 1/8th teaspoon and work up every few days while my body adjusted. The cayenne should be good quality, hot cayenne. 40,000 HU unit cayenne worked for me but 90,000 HU works better.

Magnesium is a supplement that helps to relieve the feeling of utter exhaustion. For me it can make the difference between lying in bed, not having the energy to do much or even think, vs. having the energy to be upright; think, imagine; prepare food and do other household tasks.

I developed peripheral neuropathy in my feet earlier this year.
Here's some info about what others have done for peripheral neuropathy:
* Benfotiamine might help
* Possibly a B12 deficiency
* Acetyl l carnitine (noted on a bottle of Natural Factors ALC)
* B vitamins (1, 6, 12): https://www.researchgate.net/public..._management_of_diabetic_peripheral_neuropathy
* MSG, glutamate worsens neuropathy for some people.

Antibiotics resolved the pain in this case study:
http://n.neurology.org/content/80/7_Supplement/P06.228

Weighted blanked, from an Amazon.com review:
I suffer from neuropathy due to an autoimmune disease. My Rheumatologist reccomended I try a weighted blanket to help aid in my sleep. I find this blanket has increased my quality of sleep and lessened my nightly pain. I highly recommend this to anyone who suffers from chronic pain.

From CFS_For_19_Years on PR:
Dr. Herbert Mansmann, former director of the Magnesium Research Laboratory at Jefferson Medical College, Thomas Jefferson University was a diabetic with a congenital magnesium deficiency and severe peripheral neuropathy which he was able to reverse with a year of using oral magnesium preparations at very high doses.

http://forums.phoenixrising.me/inde...ts-best-kind-to-take.52208/page-2#post-864902

Here is his original article:
http://web.archive.org/web/20071012...rchlab.com:80/Dosing-with-Mg-Suppl-6-3-04.htm

From Misfit Toy on PR:
This worked for me...take gabapentin (if you have it) open up the capsule and pour it into cream...aveeno, etc...and put it on your feet and legs. It works! It helped me big time. I have peripheral neuropathy in my feet from sjogrens.

From Chris on PR:
I have some of what seems to be neuropathy, that manifests at night -- I have found a few things that help: a low dose of Gabapentin, use of a Revitive electric stimulator, and application of Near Infra Red LED energy.
Also, I don't think duration of ME has an effect on the possibility of full recovery. I think that if someone discovered the proper drug, we could switch back to the fully healthy state pretty much immediately. ME seems to be an on/off state switch.
I think that for those of us with long term ME/CFS we probably develop secondary health problems from having so many bodily systems disordered for such a long time.

side effects of VitD are almost not known, though kidney stones have been looked at
Kidney stones when taking vitamin D are usually from lack of magnesium. It's important to take the cofactors.
 

andyguitar

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I think that for those of us with long term ME/CFS we probably develop secondary health problems from having so many bodily systems disordered for such a long time.
Yes this is something that can be easily forgotten about and the fact that even healthy people will develop a range of health problems as part of the ageing process.
 
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In my case, this is a multi-decade lifetime experience. When the doctor told me, oh, You have mononucleosis for the fourth time, that is medically impossible: well Ok then...I seem to have something Impossible occuring here.

so decades of various depreciations and frankly the Medical System was not available to me, I did not seek help from them at all really. When the doctors betray your One Year Old self...things don't go smoothly thereafter.

So the most help, consistently, I received for the last 20 years is: chinese traditional herbs, from a very expert Practitioner. And the 3.5 mgs of LDN I have taken for- 4 years. I'm on low carb and near zero sugar...that has helped the blood sugar issues and digestion.

Recent improvements also occured by adding BCAA's three months ago...and recently, some of the mito support supplements. I think the d-ribose is helping something.
 
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good observation skills (to notice that something is actually helping)
Seems like this topic would be an interesting one to explore with our group..how DOES one enhance observational skills in this arena and how can we better MAKE NOTE OF things which help.

At this moment, I will have no clue if: 6 things I started up around Sept 1 are whats helping me feel better or if its simply I am pacing and resting better now.

Wish we had better ways to measure the body system to give us more direct "data".

I suppose I could just: stop everything. Do a big break and watch what happens. Reluctant, here.
 

tyson oberle

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If you have low BP and/or OI (such as NMH with falling BP or narrowing pulse-pressure) then it can be hard to stay upright. Cayenne has helped me to stay upright longer.
I have low blood pressure. When I googled "cayenne and blood pressure" all the articles state that cayenne lowers blood pressure. So I am not sure if I should try cayenne
 

PatJ

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I have low blood pressure. When I googled "cayenne and blood pressure" all the articles state that cayenne lowers blood pressure. So I am not sure if I should try cayenne
Cayenne is a blood pressure stabilizer so it lowers high BP or raises low BP. My BP is sometimes 75/45 when I'm lying down so I certainly qualify as having low BP. And my pulse pressure narrows as I remain upright. But cayenne helps me stay upright longer.

Sometimes my BP cuff doesn't even show a rise in BP with cayenne yet I can stay upright longer anyway. I've read that peripheral BP and central BP can be different so cayenne may still benefit but without it being visible in a BP reading.
 

Wishful

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Wish we had better ways to measure the body system to give us more direct "data".
Yes, I've often wished I had some sort of definite internal monitor for such things as pain or energy level. Maybe digital, based on a standard value? A 'percentage change from last value' would be nice too. "Oh good, chocolate donuts reduced my pain level by 7%." :D

A good way to improve observational skills would be useful too. Well, I'm sure I could improve my record-keeping to track more things in greater detail, but then I'd also need to know 'how to improve one's motivation to do that extra work while suffering from ME'. *sigh*

Likewise, the 'big break' or 'major simplification of factors' probably is the best way to test whether something is actually helping, but the worry about 'losing ground' to ME may be a valid worry. So far I haven't done anything that has caused irreversible worsening of my ME, but others have reported that, so I can't say it's not a possibility.
 
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Here's some info about what others have done for peripheral neuropathy:
Thanks for the info on Peripheral Neuropath. I’ll share the AAN article with my neurologis!

Resolution of Pain in the Absence of Nerve Regeneration in Small Fiber Neuropathy Following Treatment of Lyme Disease (P06.228)
Naomi Feuer, Armin Alaedini
First published February 8, 2016,
 
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