Cfs/me doc?

[Likaloha]

Does everyone have a doctor that mainly does your cfs/me problems? I have never been able to find one, but my rheumatologist/pain specialist does as much as he can! My primary care takes care of my blood pressure and kidney issues, but I do not have a specialist for my cfs.. Maybe this is normal?

 

[Wishful]

I don't have one. As far as I know, there's nothing doctors can do for ME at this point, so there's no reason to bother looking for one. I think it's more important to have a doctor--GP or specialist of whatever sort--who is willing to try to help you by writing prescriptions for drugs that you think are worth trying. If you have other medical problems, possibly stemming from ME, you'd need doctors appropriate for those problems.

 

[Likaloha]

Thanks wishful.. Just wondered what others were doing.. I sometimes see people talking about protocols and other stuff, and just wondered if I was doing the best I could... I have been sick for more than 16 years and have really stopped research.. Thanks for talk the time to reply.. Lisa

 

[Wishful]

I think most of those protocols are self-prescribed. I also wonder if many of them aren't actually doing what they are believed to do. If you're taking dozens of supplements every day, how can you be sure that each one is actually doing something. Regular testing, by not taking them for a period of time, seems important. I've encountered plenty of things that seemed to give a benefit at first, but then stopped working.

Also, as far as I know, no doctor can properly prescribe treatments for you. No one knows what chemical mechanisms are involved, so no one knows how to correct them. Also, we all seem to respond differently. One person benefits from supplement A, while another finds that it makes their symptoms worse. The complicated protocols that one person swears by seems almost guaranteed to not be optimum for anyone else. We each have to figure out what works for us, and what things to avoid.

For me the most important tool is a daily food/activity/symptom journal. Our memories are too unreliable, but a journal allows you to go back and verify that you consistently feel better or worse after "x". Feel unexpectedly worse one day? Check back, and find that you tried a new snack, or switched to a different brand. I've been surprised at some of the correlations uncovered by my journal.

I didn't discover my effective PEM blocker (cumin) until year 15 or 16, but it makes a huge improvement in my quality of life (can do physical stuff again without PEM), so don't give up experimenting and hoping to discover something that works for you. No doctor would have suggested cumin, or T2 (my other reliable ME treatment). Both of my reliable ME treatments were accidental discoveries. Maybe an ME specialist's suggestion would work for you, but I don't think that the probability is any greater than for something you decide to try for yourself.

 

[Desertstorm]

Does everyone have a doctor that mainly does your cfs/me problems? I have never been able to find one, but my rheumatologist/pain specialist does as much as he can! My primary care takes care of my blood pressure and kidney issues, but I do not have a specialist for my cfs.. Maybe this is normal?

Very normal. I have my care split between four docs and non of them could get their heads around it. I take care to watch what each is up to as not to conflict with the others. It is pretty much treating symptoms. That said one doc who really has taken the time to read up on ME/CFS called a hospital wide meeting to discuss my case so ER docs and others are more aware. In this regard I feel very lucky. In fact several docs such as radiology and wound care have taken the time to speak with me about CFS and Gulf War Illness.

 

[Timaca]

I think most of those protocols are self-prescribed. I also wonder if many of them aren't actually doing what they are believed to do. If you're taking dozens of supplements every day, how can you be sure that each one is actually doing something. Regular testing, by not taking them for a period of time, seems important. I've encountered plenty of things that seemed to give a benefit at first, but then stopped working.

Also, as far as I know, no doctor can properly prescribe treatments for you. No one knows what chemical mechanisms are involved, so no one knows how to correct them. Also, we all seem to respond differently. One person benefits from supplement A, while another finds that it makes their symptoms worse. The complicated protocols that one person swears by seems almost guaranteed to not be optimum for anyone else. We each have to figure out what works for us, and what things to avoid.

For me the most important tool is a daily food/activity/symptom journal. Our memories are too unreliable, but a journal allows you to go back and verify that you consistently feel better or worse after "x". Feel unexpectedly worse one day? Check back, and find that you tried a new snack, or switched to a different brand. I've been surprised at some of the correlations uncovered by my journal.

I didn't discover my effective PEM blocker (cumin) until year 15 or 16, but it makes a huge improvement in my quality of life (can do physical stuff again without PEM), so don't give up experimenting and hoping to discover something that works for you. No doctor would have suggested cumin, or T2 (my other reliable ME treatment). Both of my reliable ME treatments were accidental discoveries. Maybe an ME specialist's suggestion would work for you, but I don't think that the probability is any greater than for something you decide to try for yourself.

Wishful~ can you explain your cumin and T2 treatments? What you do and how they help you? Are you referring to the spice cumin? Thanks!

 

[Timaca]

Does everyone have a doctor that mainly does your cfs/me problems? I have never been able to find one, but my rheumatologist/pain specialist does as much as he can! My primary care takes care of my blood pressure and kidney issues, but I do not have a specialist for my cfs.. Maybe this is normal?

And to not get off topic....I do have a CFS doctor. I saw all kinds of doctors trying to figure out what was going on with me, and no doctor could find anything wrong. I see Dr. Montoya at Stanford and I have been helped by antimicrobial treatments. I am not normal (for me) but I am much better than I was at my worst.

In addition to antibiotics and antivirals, I changed my diet. At this time, I eat whole foods, plant based, vegan, gluten free (and oat free). I am still testing some foods (eg need to test peanuts for example)...but changing my diet has helped. I didn't think I had food intolerance issues, but apparently I do.

 

[Wishful]

Wishful~ can you explain your cumin and T2 treatments? What you do and how they help you? Are you referring to the spice cumin? Thanks!

Yes, I found that cumin (Cuminum cyminum) very effectively blocks my physically-induced PEM. Half a level tsp of ground cumin works for me, and it lasts 3 days. With it, I can do pretty much any physically strenuous task, for hours, without triggering PEM. It doesn't block my cerebrally-induced PEM. I posted details about it in the PEM subforum ('Possible PEM Blocker?'). No one else has reported that it works for them though. Totally blows my chances for a Nobel prize.

T2 is similar in that it works reliably for me, but no one else has reported benefits for their ME. My ME symptoms will rise significantly from the baseline level, and taking a single dose (100 mcg) of T2 (3-5 diiodothyronine) seems to reset something and restores my symptoms to the baseline level again. The reset lasts for a very consistent 21 days; something that should identify which biological process is involved, but I still haven't figured it out. Taking more T2 or taking more than one dose doesn't help more, and actually interferes with the benefits. Also, taking iodine (small drop of tincture of iodine) works just as well as the T2, so I assume that it's boosting my thyroid gland's production of T2. The iodine likewise works on a single dose rather than daily supplementing.

There's a brand of T2 available on Amazon last time I checked. After my last bottle of T2 ran out, I switched to iodine, since it's cheaper. Actually, my last bottle of T2 stopped working, because at one capsule every 21 days, it had lost potency before I used it up. For cumin, I use no-name ground cumin from the local grocery store.

If you do decide to try one or both, please post your results, even if negative. I keep hoping they'll work for someone else.

 

[Likaloha]

Thanks everyone for your replies... unfortunately much of my problem is the residual brain damage from the West nile meningoencephalitis... I had one of the first cases in my area, so had very delayed treatment (even though there is no cure )the e.r. could have kept me the first time and my meningitis may not have turned into encephalitis and I may not have been going into multi-organ failure.. anyway,really just wanted to say thanks for reading and taking the time and energy to reply... Lisa