Progressive M.E.

[panckage]

@panckage I guess I could do some. The question is, should I push myself to do these exercises? I don`t have the answer.

That's a great start then haha. Take @caledonia 's advice and find out an activity level that doesn't make you crash and then try to gradually build up from there to see what your limit is.

I think it's the best advice because if you can eliminate crashing (or minimize it) then you can have a clearer baseline to test treatments against

 

[Mariah]

Just don't think deconditioning is THAT big of a factor in my serious decline towards being seriously ill. You do loose muscle mass, but as I said I've often tried to live as if I was well and have maintained some of it. And when I have better days/hours than the rest, I still manage to do more again.

 

[caledonia]

If you have POTS as well and do not monitor your HR you could be constantly over shooting your anaerobic threahold which will cause crashes.

Based on what I've read from the people who do well on heart rate monitors, you sound like a good candidate for this - you reported being on a beta blocker due to racing heartrate.

Hope your birthday comes soon!

ps. beta blockers can deplete melatonin which can cause insomnia. This happened to my mom. She had ME, a racing heartrate and was on a beta blocker. She didn't sleep more than a few hours a night for 20 years. Wish I had known this back then.

Betablockers also deplete CoQ10. You can supplement with melatonin and CoQ10 to compensate.

You can find out what any drug depletes by googling the name of the drug and the word "depletes".

 

[Mariah]

@caledonia My birthday is actually just a month from now, hoping to get a HR watch! My boyfriend has certainly gotten the hint now I think . I agree I am a perfect candidate for this, I have lots of POTS issues. Thanks for the other tip, I`ll check it out!

 

[Tabitha]

Sudden onset. 10 years progression. Then 20 years improving.

During progression no symptoms left. During improvement many symptoms disappeared.

How long did it take to feel better? I'm wondering because I'm looking into immunomodulation (if testing shows that's what I need). Did you feel worse before you got better? I also feel like my version of ME/CFS is progressive

 

[lansbergen]

How long did it take to feel better? I'm wondering because I'm looking into immunomodulation (if testing shows that's what I need). Did you feel worse before you got better? I also feel like my version of ME/CFS is progressive

The first thing that happened was enough pain relief within 10 minites to let me sleep for a few hours. That made I kept teken it. The next thing I noticed was that flares slowly became less severe and were shorter.

 

[Mariah]

@Tabitha What testing are you doing, and what immunemodulators are you looking into?

 

[Hip]

I developed ME/CFS in around 2005, and was in a year-by-year decline until around 2012. In my worst years, I was so whacked with fatigue, that for 2 days a week I'd be in bed asleep for around 18 hours a day, and for the rest of the week, I'd spend at 14 hours a day asleep.

What seemed to turn my year-by-year declining trend around, and made me feel a lot better, was high dose selenium, which may have work through an antiviral mechanism. I have a thread on this here:

High Dose Selenium Significantly Improves My Fatigue and Brain Fog


The improvement in health level was quite sharply defined, and occurred over 2 months in the summer of 2012, when I started taking selenium.

The only other two treatment protocols I started around that time were the supplement N-acetyl-glucosamine (I have a thread here), and the leaky gut protocol detailed here.

However, I think the selenium was most likely the cause of my significant improvements, because every time a stop taking selenium, my fatigue and brain fog quickly start to return within a week.

 

[Hip]

@Mariah
Have you tried any of the usual ME/CFS treatments that ME/CFS doctors prescribe, such as low-dose naltrexone, vitamin B12 injections, the methylation protocol, or antivirals / immunomodulators like oxymatrine (if you have enterovirus infections) or Valcyte (if you have herpes family virus infections)? Note that LDN may not work unless you also take vitamin D3.

You may find this document of interest:

Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment

 

[Tabitha]

@Tabitha What testing are you doing, and what immunemodulators are you looking into?

I'm not really sure at this point what testing. It kind of all depends if I can get my doctor to take me seriously, which will probably be difficult because of the psychiatric drugs I've tried in the past and are in my records. I have to do more research, and chart my symptoms more. I'm going to start using a heart monitor and blood pressure cuff to start charting that.

As far as immunomodulators, I'm interested in trying ldn. When I was seeing a psychiatrist, he grudgingly prescribed it for me but without any support or instructions from him I only took it for a week. Not nearly enough time to see if it would work. So I'm thinking of ordering it and giving it a real trial this time.

I've also been taking selenium because of what @Hip said on his website and my own knowledge that I have thyroid antibodies, and I'm not sure it's doing much for me. I'd say it's worth a try though. But I've only been taking it for about a month so perhaps not long enough to tell yet.

 

[joanna91]

My ME/CFS seemed to be getting progressively worse over the years and fatigue kept getting more and more debilitating and extreme, but then I discovered LDN and got my doctor to write a script for it. I've only been on it for a few months but it seems like my CFS has improved a little (as opposed to getting progressively worse over the years like it used to). However, I don't think it's a cure, even though it does help. LDN is definitely worth a try though because it has few or no side effects, very safe, and is affordable.

 

[Mariah]

I tried LDN for 3-4 months without effect unfortunately @joanna91 . Nothing seems to work for me. Glad you found something to help you!

 

[knackers323]

Levamisole. I did not get it from a doctor. I doubt any doctor will prescribe it. Back then it was freely availible.

I am not cured but compared to what it was I now am in heaven.

@lansbergen can you please tell us if there is a particular type or brand that you use and/or where we can buy it

 

[Dechi]

A paraneoplastic panel screens for autoantibodies to that cause neurological issues and many other issues with the body. This panel is associated with small cell cancer in several areas of the body but can also exist without cancer. It can present exactly like ME in some cases with similar symptom overlap.

http://www.mayomedicallaboratories.com/test-catalog/Overview/83380

The panel is done by the Mayo Clinic but also in Canada, US, UK, etc.

A ME soecialist will do a thorough workup of all know viruses, bacterias, parasites that may be reactivated. As well as the state of your immhne system and other testing as well. They will also provide treatment protocols based on findings.

In Canada there are probably 2 experts.

UK has one Dr Myhill.

US Dr. Chia, Petterson, Montoya, Klimas, Kaufman, etc.

Belgium/US Dr Kenny De Meirleir

There is also one in Germany I forget his name.

@Justin30 Who are the two experts in Canada ? I only know of one, Dr Byron Hyde.