Jump to content

Lots of questions

Guest Finrussak

Recommended Posts

Guest Finrussak

Ok...this will seem overwhelming but any/all help is appreciated. Frankly I am so very tired of more "tests" and specialists...and now that Ive gotten a Dx from Dr. Grubb ( June 05) I am loathe to go further; but even he alluded to the fact that I should consider all paths of possible condtions adding to or entangled with the POTS/OI.

1.any of you have experience with which specialist/which tests for Mast cell disorders--[i have the jug and test req.order after much fighting with Cigna and Quest and finally calling to MAYO labs directly for the instructions!!!) But I havent thankfully had a "bad enough" episode in a few weeks so it sits there in my powder room waiting...will it even be "worth" it??? Dr Biaggioni himself suggested the test to my local cardiologist after Vanderbilt turned down his urgent request to FLY me there in April after a very bad 4 day hospital stay and tilt table dropped my BP to 60 over NOTHING!!! rather than see me Vbilt had Dr B email my local doc...thats when I finally got word from Dr Grubb that he will see me ( after waiting 18 months) -even if its abnormal who will care??? my endocrinologist has all but dismissed me.

2.What about the metabolic and/or mitochondrial diseases?? Our dysauto symptoms overlap with so much its hard to know whats helpful vs overkill.(Dr. Grubb's opinion was a kind of 'if you want or if you think theres a chance you MAY want to pursue this") I think the prob is not enough info about these things is out there...let alone how often it impacts dysauto.Which specialist would be appropriate as my family practice is useless...its a residency program so I get the Doc of the Day...the dysauto stumps them let alone something like this!!!

3.Ive noticed many of you complaining of episodes of weight loss etc...I have long bouts of inability to absorb, needing diet restrictions ( gluten, dairy etc),weight loss unexplained by all else after too many tubes ("oscopies")going up and down, and pancreas inflammation with occass full blown attacks. Also I get the severe nausea and often vomting once my heart rate is zooming...almost like the retching is my body trying to force the rate down ( by a vagal thing)...afterwards I DO feel like the episode is better..anyone else??

What do you guys do for all of this??? especially the dull full 'pain' center abdomen with standing/sitting that adds to the nausea? When I am really struggling I rely on Ensure plus...at 350 cal a bottle if I can gag 1-3 down a day on a bad day at least Im getting something in. pre-Grubb,been told its 'nervous stomach', 'anxiety' etc but I seem fine unless Im in an "episode"...then fine again..any thoughts??

4. Any good/bad experience with supplements, esp. magnesium??? Lyme has me depleted ( and the CoQ10 too) so I try to remember to add these...but many vitamins/supplements add to the nausea- any helpful for the cardiac sx of this?

5.Ive been delaying asking the drs to sign forms for disabled car tags...would help as I often cant walk more than a few steps but Im loathe to "accept" my current sttae of infirmity...any others out there who had to struggle with acceptance and how??plus my 2 main drs keep saying "this is only temprorary" which I hope it is but I have been so ill for so long ( 4-5 yrs with last 2.5 nearly bedbound at least 50% time)...

thank you for your feedback!!!Im sure there are more questions I have in the midst of the oatmeal mush with holes they call my brain.


Link to comment
Share on other sites

I agree that if you feel you need more testing in order to put a better picture together it is well worth it.

It is true the POTS is just a syndrome that usually has its roots from something. For me it was from undiagnosed Lyme Disease coupled with a genetic factor, and hypermobility......

I have pursued many avenues b.c I felt it was the best thing for me in the end to have as much info about my body as I could.

I think as far as what supplements, meds, Way to eat etc.... We are all so individual that it really is hard to say that one way can work for every person.

I am lucky in the sense I do not get sick from eating... I will get bouts of nausea, and fullness, but most of the time it does not stop me from eating....

For supplements I have tried many different things. I do drink a protein shake every day made with Rice Milk....

I avoid processed foods and dairy...

I take a homoepathic cell salt




I work with a holistic Nutritionist/naturopath and so my supplents and diet can change every few months.

The biggest relief I have seen has been the use of IV fluids when needed, especially when sick.

I put electrolites in my water and take salt tabs.....I just started using Celtic Sea Salt and Himalayan Sea Salt for better mineral absorption.

And compression hose have been a lifesaver.

Also you shouold not feel guilty if you need a handicapped sticker.... There have been times in the past when I truly wish I had one.... So dont beat yourself up about it. It can help you function better and that is what it is all about.

Sorry I cannot answer all of your questions.... But just wanted to say welcome :P

Link to comment
Share on other sites

Sorry I forgot to add in my list if things that help me: antibiotics for lyme Disease. I am currently on Bactrim, Ammoxicillan, Bicillan, Malarone,,,,,

I hope you have found a good Lyme Dr to manage you as well.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...