jpjd59

There are two doctors that my daughter has seen who are on the West Coast. One is Dr. Goodman at the Mayo Clinic in Arizona and the other is Dr. Jaradeh at Stanford. Both of these doctors specialize in POTS patients.

Pam

We took my daughter to see Dr. Gotlieb at Stanford (a hemotogist who speciaizes in mastocytosis). My daughter has POTS and we were convinced that she had a mast cell disorder because she had all the symptoms. It turns out that she does not have a mast cell disorder but, instead, a problem with her immune system (caused by a virus which started this whole thing).

I had also e-mailed Dr. Afrin and he was very helpful in discussing with me what tests her primary doctor should run to start the process to see if she had a mast cell disorder.

Good luck!!

RubyLane:

Welcome from another Californian!!! I'm sure you will find this site very helpful.

Pam

Wow! POTs, the flu, and you still made it through your final. I'm impressed!!!!!

Jacquie802:

My daughter, who has POTS, has this feeling of shortness of breath several times per day. We have pulmonary tests run and all the tests say that her lungs and oxygen level are fine.

We have not found anything that helps (since she is so sensitive to meds she can't even take Ativan) so she just has to wait until the feeling passes.

Westernmass:

I know the feeling! It's really a disappointment when that is the best advice they have to offer.

Interesting! We have been on the POTS "journey" for 16 months now and my daughter was just diagnosed with CFS. The doctor just ran some tests and found out that her NK cells are extremely low. The doctor is now testing to see if the previous virus that she had damaged her immune system or if the virus is still smouldering somewhere in her body. The will determine what treatment he suggests for her.

Pam

Great question! I am not a person that has POTS but I am the parent of a daughter that has POTS. She has had it for 16 months and I have gone through many stages so far. Hope, fear, etc. Now I am in the anger stage. Angry that a 24 year old has to be basically bedridden. Angry that such a good child has something so bad happen to them. Angry that there is nothing I can do to cure this.

I'm sure this stage will pass and I will learn to deal with this better but right now I am just MAD!

Pam-

Was it an NK function test or NK count? They say NK function is often low in CFS. My CFS Doctor sent me for both tests - NK function was fine, but count was very low which she said is also seen in CFS. I was also tested for all kinds of viruses with Epstein Barr showing as chronic and active and a few others also showing positive. Not uncommon in CFS either. Is this a CFS specialist she's seeing?

Naomi:

Yes, the immunologist/infectious disease doctor that she is seeing is a CFS specialist.

May I ask what treatment you are doing regarding your NK count and chronic and positive virus results?

Pam

Ht888:

After seeing over 20 different doctors our new PCP referred my daughter to an immunologist/infectious disease specialist who was the doctor who ran this test. He is also testing for different viruses to see if one of the viruses is the cause for this problem.

How old is your daughter and how long ago did her symptoms start?

Pam

Has anyone else had their Natural Killer (NK) cell level tested and has it come back low? My daughter j(who has POTS) ust got her test result back and it was 4 (normal between 30 and 170). Apparently this means the immune system is not working correctly.

Naomi:

Thank goodness you still have your sense of humor!!! That's the wonderful thing about this forum - people can relate to what you are going through and they don't feel so alone when they have useless doctor appointments.

I hope you get some answers soon.

Pam

My daughter had the autonomic testing done when she had her tilt table test but that has not helped us find a solution yet to make her feel better. It has been 16 months of trying beta blockers, salt, liquid, and many other medications (all of which she can't tolerate). It now looks like it is due to an immune dysfunction problem. (We will get test results next week).

Puppylove:

Oh you poor thing! I know how it feels when a doctor tells you that. My daughter has had more than one doctor tell her that there is nothing else they can do. Keep pushing. You will find that special doctor who wants to confront this challenge head on with you.

Stay strong . . .

Yes, about 8 months into my daughter's illness we fostered a dog to help keep her company (which we ended up adopting). I know this little dog has helped her when she is feeling blue.

That was the first diagnosis my daughter's PCP gave her "anxiety". After getting diagnosed with POTS she also saw a POTS specialist who said that she did have POTS but that she was also "anxious and depressed" and that is why she was unable to tolerate meds and that she should see a therapist. Really?????

I'd be anxious and depressed too if I felt like I was having a heart attack, had trouble breathing, and had lost the active life I once knew.

I think we finally found a doctor that gets it but she has only seen him one time. Time will tell . .. . ..

Jangle:

Thanks for the info. Yes, I know there are risks to this drug (as well as many other drugs mentioned). If in fact the labs come back in pointing the doctor in that direction, that is a decision that will have to be made. That is why I'm trying to get all the info I can now.

All I know is that my daughter cannot continue living in the state she is in. Let's keep our fingers crossed that the labs will point us in a better direction!!!

Chaos:

We have been to so many doctors trying to find answers. We have been to the Mayo in Arizona, UCSF, and Stanford (we live in California). The doctor that mentioned this drug is actually an immunologist/infectious disease specialist that was referred to us.

After we get the lab results I will let you know what the decision is on the next step.

Pam

My daughter's first TTT was through her cardiologist, which did not include testing of NE levels. Her second TTT was done at the Mayo and this was included in their process.

Pam

Has anyone tried Rituximab and, if so, what were side effects/benefits?

My 23 year old daughter has been suffering so much (bedridden) from POTS and the doctors they think (waiting for blood tests results) this was caused by a virus and is now causing her immune system to go haywire.

A doctor has mentioned Rituximab as a possibility (depending what blood tests results say).

Just curious if anyone else has tried this drug?

Pam

Ginger:

I am so sorry to hear this. I think that is part of the problem with this illness. People think that you are just "tired" all the time. Little do they know it is so much more than just being tired.

I agree with the other posts - he probably would have cheated anyway (he is just using your illness as an excuse). I mean, after all, what happened to the vows of "in sickness and in health"?????

Don't be afraid to ask friends for help. Sometimes they are willing to help, they just don't know how.

Pam

We have been to the ER probably 5 times in 16 months (at first because she had such severe symptoms and we didn't know it was POTS and the other visits were because of interactions to drugs that the doctors have prescribed for my daughter). At this point, we have pretty much stopped going to the ER because they usually just give her an IV of saline and watch her for 4 hours and then send her home.

_{Welcome! I hope you will find this site as helpful and suppportive as I have.}

_{My 24 year old daughter was diagnosed with POTS 16 months ago (after a viral illness). Among her many symptoms, GI issues are included. She also is unable to tolerate meds (even meds that she was able to tolerate before). She also has in inactive liver enzyme that causes her liver to metabolize drugs very slowly. She has tried craniosacral therapy, massage and acupunture. None of which have helped.}

_{We have been to so many doctors that I have lost count. The latest doctor said that he believes the virus that she had in June of 2011 is the cause and he is running a variety of tests (he is an infectious disease specialist so many of the tests are related to B cells, NK cells, T cells, etc.) Oh how I wish I had taken a biochemistry class to understand some of this!!! We should have the results in about 10 days.}

_{Hopefully we will know more in a few weeks!}

Robert:

You are not alone!!! If you are feeling helpless and overwhelmed with this process you need to have someone help act as an advocate for you (family member??). My daughter has POTS and I know she would not have had the energy to battle the medical system and be so persistent with the doctors without help from her family.

Whatever you do, don't give up. We are still looking for answers too (16 months so far) but I feel we are getting closer everyday.

Good luck!!!

Pam

Hey, you remember me posting a few weeks back about going to a new doctor/scientist that thinks he knows the reason for the blood flow issues to the head. Well, I had my first visit and am having testing from him. I'm not ready to post about his ideas just yet. But, Sue ---you're on the right track.

But . . . .one bad thing about this ---the stents with this procedure ----I was told only last about 18 months and then things go back to the way they were before. This doc thinks he has the reason figured out and knows what to do about it. And it doesn't require surgery.

I will for sure post --when I learn more. I have to wait for my test to come back.

Issie

Izzie:

This sounds like exciting news! I would love to know more when you are ready to share more details.

Pam