Brainstorm!

[Rachel]

Hi Everyone,

I need some help brainstorming!!! Despite the brain fog we face, I know that there are a lot of smart people here on the board. I?m hoping that some of you can help me!

My POTS and NCS have changed a lot over the years. And the antibody that was originally proved to be the culprit of my dysautonomia, is now gone. I?m trying to figure out what to look into next as far as tests and treatments go.

It seems that the more questions I have answered, the more questions I have! Any help you can give will be greatly appreciated.

I?ll summarize my health over the last 15 years:

1990: unexplained nausea problems

1991: ligaments in feet tearing and I needed special-made orthotics. PT told me that I?m too flexible and my ligaments are

too loose.

1993: difficulty breathing in swim practice and competitions

Extensive allergy and asthma testing, all negative

1994: mono-like fatigue

all labs normal

eventually diagnosed with NCS.

1995: diagnosed with POTS

Johns Hopkins finds an antibody in my blood to m2 muscarinic receptors (part of the ANS system). This was what was

causing my dysautonomia.

1996: We still hadn?t found a med that worked for me, but a few other things made life with POTS and NCS manageable.

Lots of fluids, counter maneuvers, diet consisting mainly of raw fruits, raw vegetables, whole grains, nuts and chicken.

1997: I was functional again. Not normal, but functional. People who didn?t know me well would have no idea that I struggled with my health.

2001: My health started getting worse again. In 7 months I went from being able to work 32 hours a week at a grocery store (standing!) to wondering how I would make it through my wedding and reception. Counter maneuvers, diet, and fluids

were no longer working.

2002: cut back drastically on activities, worked part time

2004: no longer able to work

2005: no longer able to cook, do laundry, clean, etc., and often bedridden

2006/2007: same as 2005, just not usually bedridden

So?basically, I struggled with POTS and NCS in the 90s, but learned what my body needed to survive. I got along fairly well for 4 or 5 years. And then it was like all of a sudden nothing worked anymore. And my health rapidly declined.

We checked again (just this month) for the antibody that was found in my blood because I was starting to wonder if plasmaphoresis would be my only hope for treatment. But the antibody is now gone. Can autoimmune things clear up on their own? Is that maybe why I felt better for a few years?

I suspect that I?ve had EDS all along. Maybe that is why my POTS never completely went away even during the 5 “good” years. But could something else have happened in 2001 that caused my symptoms to become so severe? Or can EDS cause POTS to be this severe?

My main new symptoms are:

Overwhelming fatigue

Muscle weakness

Cognitive difficulties

Great difficulty falling asleep, staying asleep, and getting restful sleep

Chemical sensitivities

Other than the above, my symptoms are mostly the same. They?re just much worse.

Here is a list of things that I have been tested for in the past year:

Myasthenia gravis

MS

Chiari

Mycoplasma blood infection

Mitochondrial disease

Lyme disease

Acetycholine antibodies

M2 muscarinic receptor antibodies

Vitamin B deficiencies

Thyroid, blood count, etc.

I?m going to have an echo done tomorrow.

Does anyone have any ideas for what could be causing the extreme fatigue, weakness, and sleeping difficulties? Any ideas for other tests to do?

I don?t want to give up yet. I?m just so confused! The POTS I?m dealing with now is so different from what I dealt with in high school. So I?m wondering what is going on.

I apologize for such a long post. If you made it through my whole post, congratulations!!!! If you just skimmed, I understand!

If you're able to brainstorm with me, I'd appreciate the help!

Thanks,

Rachel

Edited March 28, 2007 by Rachel

[juliegee]

Rachel,

You mentioned the EDS, so I won't. That may be the gentic unerpinning underlying all of your DXes. But, it also seems clear to me that you've got chronic fatigue syndrome, CFS, at least by Dr. Peter Rowe's standards. He's the doctor treating my son at Johns Hopkins.

You didn't mention, but are you still having stomach issues? If you are, I will give you Dr. Rowe's prescription for CFS (with stomach issues.) He asks all patients to try a 2-3 week period of a totally dairy-free diet. No milk protein at all. It's tough at first. If it helps, even a little, make it a permanent change. It may help with nausea and stomach acid, but it may also lessen inflammation throughout the whole body. And, Dr. Rowe's a huge advocate of a special type of physical therapy called manual therapy. Google it to learn more about it.

He DXed my son with NMH and CFS a few years ago. Mack is much, much improved on this therapy as well as: salt, fluids, meds, etc.) Mack doesn't have EDS like you might.

Also, as weak as you are, you are probably quite deconditioned. I would think that trying to exercise a bit, and then a bit more each day, would be a huge benefit. The heart is a muscle, and you know what they say about use it or lose it. If you can only walk a few steps. Do it. the next day a few more, etc. Keep a journal to keep track of your progress and your body's response to exercise, dairy-free, etc.

I know you were looking for possible causes of your dysfunctions to bring up at your doctor's visit... I just couldn't help sharing with you the excellent advice we got that has been so effective.

All the best-

Julie

Hi Everyone,

I need some help brainstorming!!! Despite the brain fog we face, I know that there are a lot of smart people here on the board. I?m hoping that some of you can help me!

My POTS and NCS have changed a lot over the years. And the antibody that was originally proved to be the culprit of my dysautonomia, is now gone. I?m trying to figure out what to look into next as far as tests and treatments go.

It seems that the more questions I have answered, the more questions I have! Any help you can give will be greatly appreciated.

I?ll summarize my health over the last 15 years:

1990: unexplained nausea problems

1991: ligaments in feet tearing and I needed special-made orthotics. PT told me that I?m too flexible and my ligaments are

too loose.

1993: difficulty breathing in swim practice and competitions

Extensive allergy and asthma testing, all negative

1994: mono-like fatigue

all labs normal

eventually diagnosed with NCS.

1995: diagnosed with POTS

Johns Hopkins finds an antibody in my blood to m2 muscarinic receptors (part of the ANS system). This was what was

causing my dysautonomia.

1996: We still hadn?t found a med that worked for me, but a few other things made life with POTS and NCS manageable.

Lots of fluids, counter maneuvers, diet consisting mainly of raw fruits, raw vegetables, whole grains, nuts and chicken.

1997: I was functional again. Not normal, but functional. People who didn?t know me well would have no idea that I struggled with my health.

2001: My health started getting worse again. In 7 months I went from being able to work 32 hours a week at a grocery store (standing!) to wondering how I would make it through my wedding and reception. Counter maneuvers, diet, and fluids

were no longer working.

2002: cut back drastically on activities, worked part time

2004: no longer able to work

2005: no longer able to cook, do laundry, clean, etc., and often bedridden

2006/2007: same as 2005, just not usually bedridden

So?basically, I struggled with POTS and NCS in the 90s, but learned what my body needed to survive. I got along fairly well for 4 or 5 years. And then it was like all of a sudden nothing worked anymore. And my health rapidly declined.

We checked again (just this month) for the antibody that was found in my blood because I was starting to wonder if plasmaphoresis would be my only hope for treatment. But the antibody is now gone. Can autoimmune things clear up on their own? Is that maybe why I felt better for a few years?

I suspect that I?ve had EDS all along. Maybe that is why my POTS never completely went away even during the 5 ?good? years. But could something else have happened in 2001 that caused my symptoms to become so severe? Or can EDS cause POTS to be this severe?

My main new symptoms are:

Overwhelming fatigue

Muscle weakness

Cognitive difficulties

Great difficulty falling asleep, staying asleep, and getting restful sleep

Chemical sensitivities

Other than the above, my symptoms are mostly the same. They?re just much worse.

Here is a list of things that I have been tested for in the past year:

Myasthenia gravis

MS

Chiari

Mycoplasma blood infection

Mitochondrial disease

Lyme disease

Acetycholine antibodies

M2 muscarinic receptor antibodies

Vitamin B deficiencies

Thyroid, blood count, etc.

I?m going to have an echo done tomorrow.

Does anyone have any ideas for what could be causing the extreme fatigue, weakness, and sleeping difficulties? Any ideas for other tests to do?

I don?t want to give up yet. I?m just so confused! The POTS I?m dealing with now is so different from what I dealt with in high school. So I?m wondering what is going on.

I apologize for such a long post. If you made it through my whole post, congratulations!!!! If you just skimmed, I understand!

If you're able to brainstorm with me, I'd appreciate the help!

Thanks,

Rachel

[cardiactec]

hey rachel,

have they checked you for lupus? ......i hope you get to the bottom of things soon....and i'd definitely have someone look into the possible EDS....

[yogini]

Hi Rachel,

I'm sorry about your dilemma. Your history was very detailed, but I am wondering what meds you have tried in the past? It sounds like you played around with meds a few years ago, but have you tried any of the more recent meds like SSRIs, midodrine, mestinon or procrit? Also, it seems that your body may have changed since then (i.e. no more antibody), so maybe it's worth going back and re-trying some of them? It would be good if you could get to one of the main POTS specialists like Mayo, Dr. Grubb or Vanderbilt.

Good luck - keep us posted on your journey.

-Rita

[yogini]

One other question - are you keeping track of how much salt you're getting? I eat a diet of fresh veggies, breads and fish/chicken, kind of like what you described. I was supplmenting my salt intake, but when I saw a nutritionist last year, I learned I still wasn't getting the salt requirements for a normal person (let alone the extra salt I need for my POTS). She told me it is really hard to get enough salt by eating those kinds of foods. I still eat fresh foods, but I have found ways to add a lot more salt to my diet. This is a big effort, bu has made a noticeable difference in my symptoms.

[pat57]

this probably makes no differance but its called an autoantibody. Anitbodies do not disappear once you have them. I don't know about auto antibodies.

[pat57]

pubmed has tons on "m2 muscarinic receptors autoantibodies" if you have hours and hours of time! However there was NOTHING on "m2 muscarinic receptors autoantibodies disappear". I asked Jeeves "autoantibodies disappear", and indeed they do. During treatment- during pregnancy. For my short look it is suspected to be temporary in both cases. And these were diabetic and adrenal antibodies- no doubt there are others, I spent only a breif time at it.

[pat57]

so I did another search

"Acetycholine antibodies"

And false postives have occured from an RA med and general anesthiea. Were you on any immune suppressive drugs? Seems that is a treatment and they disappear then too. Please bear in mind these were quick searches. I can't give anymore details than already stated.

[Tanzanite]

Make sure you check out candida too, that can cause all sorts of weird and not wonderful symptoms!

Going though anti-fungals myself at the moment, and my general health is already a little better, symptoms of which I put down to POTS. I still suffer badly with POTS but some things are a little better.

[lthomas521]

Have you had a blood volume determination and a cardiac output test?

http://www.cfids.org/archives/2003rr/2003-rr2-article01.asp

[Guest tearose]

I can't shed any more light on this for you but am glad others have.

It may be that things in us will continue to change over time and someday your antibodies will again look suspicious. Who knows.

I think even with the testing, we need to ask ourself what would we do with the information? Would we do anything differently? Do they have medications or ways of treating us should a test come back positive?

I hope you find the answers you are looking for.

this whole area is still new and bewildering...

best regards,

tearose

[lavender]

Hi Rachel,

How was your echo?

Do you have an upcoming appointment with Grubb at all? I can't remember if that worked out at all? does you doctor have any ideas? could he talk with Grubb?

What have you tried for your sleep? Would it be worth retesting for the antibody or are they pretty sure thats not an issue at this point?

wish i could help!

[bttrflyamby1981]

I can't add anything, just wanted to give my support.

[Rachel]

Hi Everyone,

Thank you for your replies! I'm sorry it has taken me a while to get back to you all. I've been very sleep deprived lately, so I was too brainfogged to think clearly enough to respond. But here I am again, so I'll give it a try!

Julie,

Thanks for all of the information!

I still have some nausea problems, but it is nothing like I had when I was younger. I don't throw up very often anymore, whereas it used to be a common occurrence.

I have wondered about CFS, but I wasn't sure if I should pursue a diagnosis at this point or not because I didn't think it would change treatment that much. But it sounds like from your reply that there would be some treatments if I had CFS. I'll have to google manual therapy and see what I think. And I'll also talk to my doctor some more about CFS.

I exercise as much as I'm able, but it just doesn't seem to be helping. I'm very strong all things considered, but my strength just doesn't last.

Angela,

No, I've never looked into lupus. Thanks for the suggestion. I'll have to check into that.

Rita,

Sorry, I forgot to mention meds! I have a list as long as my arm of all the meds I've tried. I've actually never found one that helped me. Even Florinef didn't work due to side effects. Meds I've tried include: SSRIs, Midodrine (currently giving this one a second try), Mestinon, Ritalin, beta blockers, and more. I have not tried procrit, however. But I have looked into it will probably my doctor about it since our latest med trials aren't getting us anywhere.

I do have an appointment with Dr. Grubb, but it isn't until December. Meanwhile, though, I'm trying to get as many tests and med trials done as possible so that Dr. Grubb has more information to work with. I'm afraid I'm at the point where I'll just need to go to mayo for extensive testing, but we just don't have the money for that.

I try to eat a lot of at least one food with salt every day (V8, salted pretzels, popcorn, Gatorade, sea salt added to food), but I've never actually counted how many mgs of salt I'm getting each day. Some days I know I don't get enough. I just get so tired of salt! Maybe I need to go back to salt tablets. I did that years ago, though I never noticed much help from them either.

Pat,

Thank you for the information. No, I've never been on any immune suppressive drugs.

Tanzanite,

I checked into candida, but my symptoms don't fit. I do appreciate the help, though!

lthomas,

I've never had a blood volume test, though my doctors in the past have suspected low blood volume.

I hadn't heard of the cardiac output test. How exactly is that done?

Tearose,

Yes, I've wondered the same thing. What would I do if a particular test came back positive? Would there even be a different treatment? I'm trying to figure out what possibilities are even worth pursuing at this point. What little energy I have is precious. So I'm not sure how much I want to use up with tests that might shed a bit of light on my health, but offer nothing in the way of further help and treatment.

Lavender,

We don't have the results back from the echo yet. It was done by a tech and she wasn't allowed to tell me anything. So I have to wait for the report to be sent to my doctor and then have one of his nurses call me. From what my husband and I saw on the screen everything looked normal, but of course we aren't doctors!

Yes, I have an appointment with Dr. Grubb in December. And my local doctor is working to see what he can do for me (meds, tests, getting me in sooner to specialists, etc). I'll have to ask my doctor all sorts of questions at the next visit and see what he says about antibodies, autoantibodies, tests, and treatment. So far all of the tests have been negative and none of the meds have worked. I don't know what my doc is going to say!

For sleep I have tried otc sleeping pills and Klonopin. I need to give the otc pills another try. The last time I tried them I was suffering from side effects from a different med, so that may be why I was wide awake all night even with the sleeping pills! As far as the Klonopin goes, it helped me sleep at night and helped me to stay asleep, but the side effect of muscle weakness was too much for me.

Amby,

Thanks for your support!

Well, that was long, but I think I've covered everything. Thank you everyone for brainstorming with me! I greatly appreciate your help.

Rachel