New Perspective on POTS/CFS

[ethansmom]

I saw a new doctor last week, he is an infectious disease & autoimmune specialist. I was really pleased with my visit and just wanted to share. His specialty is CFS and fibromyalgia- he evaluated me for both and while I do not have fibro, he definitely seems to think I have CFS. He was also familiar with POTS and its link to chronic fatigue. He explained to me that many doctors (which we all know) send us away with a diagnosis of CFS without clear answers about WHY we have it. He believes that POTS is secondary in many cases to an underlying problem, and that many doctors are pumping us full of medications to help control our symptoms, while the cause is never identified in many cases (although some of us do know our trigger, there are times when that knowledge doesn't get us very far). Because I am a classic case, he is hopeful that he can identify some things that may help us figure out what caused this, and what we can do about it. He started off with loads of bloodwork that has NEVER been done on me before, despite repeated requests to many doctors over the last few years. He is testing for Lyme disease, and doing genetic/DNA testing that my insurance forked out $2K for . He is doing very involved testing on my immune system...to try to put the pieces together. I go back Dec. 7th for the results. He says he will keep pressing on until he has answers for me.

The fact that I am pregnant may alter the results a bit, so if everything comes back normal he will retest next year. He explained to me that I am destined to be symptom free during pregnancy because of my specific case of POTS/CFS, the production of hormones allows these viral flare ups that I have to lay dormant. I am looking forward to the end of my morning sickness so I can have a few months of normalcy again

I am cautiously optimistic, but hopeful that I will walk away with more answers than I have had thus far. Just wanted to share...

[MomtoGiuliana]

Jessica

That is great news that you found a doctor taking this so seriously -- and doing all the possible blood work, it sounds.

If he can figure out what caused your POTS and resolve it that's great.

What does he mean by symptom-free and I wonder how he knows with such certainty that you have a type of POTS/CFS that goes dormant in response to hormones. Seems like he is more willing to go out on a limb than most doctors.

Hope you are feeling much better very soon.

Katherine

[opus88]

Hey, Jessica!

Sounds like you may be looking at a keeper of a doctor! I really hope that he turns out to be as good as he sounds from this one visit. Who knows - he may be the doctor so many here are looking for!

I'm keeping my fingers and toes crossed that he works out well for you and can get to the bottom of your trouble, and I'm looking forward to your updates on this guy and your progress.

[DawnA]

I am happy for you Jessica, he sounds great!!!! I can not believe other Drs did not

have you go through blood work like a lymes test...urgh!! I hope he can help you.

dawn anich

[Guest veryblue]

Wow...it seems like you got ahold of a great doctor! He sounds like a keeper to me!! Hopefully he can find something wrong with you and fix it...then you can have the wonderful life of a busy normal mom...running all around town taking your kids here and there. I dont think I have ever said this before but Ethan is a doll. He's a cutie! I'm just glad to hear that there is a doctor out there (and in the US..thats a plus) that thinks that something is causing POTS in most cases. That's what I have always felt deep within my heart...something is just off in my body and if that was fixed then I would be fine again. I read somewhere...not sure where but I will look...that something like 95% of POTS cases are secondary to something...here's the quote I wrote it down..."POTS is usually not a diease in itself, it is the result of antoher disorder wrecking havioc on you nervous system." I wish I could find a doc that understood that concept...maybe if you dont mind you could share your docs info on this board. He might be able to help a lot of people. I would sure love to go to florida anyway...its one of the few states I havent been to. Have you asked him if he has ever found an underlying cause to a patients POTS and now they have returned to good health? Find out his track record. Sure there are some people who just have POTS from birth from genetics but many many others out there have a good chance at returning to normal again. Doctors never look for a cause...and there is much more money to be made by both doctors and pharmacutical companies in treatments rather than curative procedures.

[MightyMouse]

Jess, I'm so glad you now have a doctor who is working out well for you--you deserve it!

[MightyMouse]

BTW, regarding veryblue's suggestion about sharing doctor info-- DINET maintains a list of doctors that's accessible on the main site. In order to get a doctor added, just send an email to me or to Michelle. At that point, one of us contacts the doctor to see if they're interested in having their name posted on our site and what they'd like us to share w/ people regarding their spcecializations.

Nina

[ethansmom]

Well I will let you all know how my experiences go with this doctor...if he ends up being really fantastic, then I will contact Nina or Michelle about adding him to the list!! I am just waiting on the test results right now...so it will be about 3 weeks before I know anything else. And we'll go from there...I just hope he can follow through, as he seemed very confident that he would get to the bottom of things. I am sure he can try, but my concern would be how he would proceed with treatment even if he did figure it out. I'll keep ya posted!!

[ramakentesh]

very interesting post. Id be keen to hear how it pans out.