Fussybug

POTS cardio recognized possible Mitochondrial Cytopathy. Recommended consult.

Mitochondria Disease-focused Neurologist diagnosed me with Mitochondria Myopathy - Carnitine Deficiency.

I began with Carnitor (L-carnitine) tablets and had GI reaction.

I was switched to liquid Carnitor and GI reaction resolved.

I am benefiting from the Carnitor (improved burning of muscles with exertion, improved stamina).

He just added acetyl-L carnintine OTC. That form helps brain function as it was explained to me.

Ramakentesh,

Any thoughts?

Hi Sue

I am following in your footsteps.

VIP is at 160. No tumor (yet).

Suspected involvement in my POTS and mast cell.

The whys and hows still coming together.

I would love the opportunity to swap information.

Will PM you as well.

Thanks for posting.

Amy

Thank you Jacquie!!!!!!

I had thought of that IHB. She already has doctors spread between Portland ME and southern NJ. So trying to keep her closer to home. Resources are running low.

How are you doing, BTW? Send a PM when you are up to it!

Hi

I have a friend that has been treated for Lyme Disease. She has been told her remaining symptoms appear to be POTS and should be properly evaluated by an autonomic neurologist. I see Beth Israel - are there any other options in the Boston area or going up toward ME that would be an option for her. She is Portland.

Thank you!!!!!

Great, she is very excited. It is 20 minutes from her house. Thank you again!

He looks like pediatric cardiology. What about adults?

Thank you!

Friend has Lyme Disease diagnosed and being treated. However, POTS is looking like a significant part of unresolved symptoms. She would like a consult with a compassionate doctor in DC area. I passed along Dr Khurana in MD already. Is there someone closer?

Thank you!

Checking to see if a doctor is located near Cincinnati or Indianapolis.

Also any new opinions about Dr Amir Zia in Bowling Green, KY.

Thank you!

Flower this happening to me too. I did infusion therapy last summer. Starting back up again this week. Maybe the TX heat, dryness is too much for me I don't know. I too follow my doctors fluid intake directions perfectly. My blood volume testing is in 4 weeks. Please keep me posted on any findings.

Wish you well.

Swimming has been the best. I had a flare up 8 weeks ago so I am off exercise pending testing with Dr Levine at end of August. He already told I won't be returning to the pool as a primary source of exercise. But I do feel as close to normal in the water, especially if a little cool. The therapy pool at rehab made me lightheaded and like a noodle.

I first noticed the blood pooling while taking 4 weeks of Levaquin in Spring 2009. I was then diagnosed with POTS in Spring 2010. Prior to 2009 I was not complaining of POTS associated symptoms. In hindsight, they existed in a mild form but the Lyme and Babesia symptoms - chills, fevers, swollen lymph nodes, sore throats, fatigue, muscle aches, etc were most pronounced. Now those are all gone, and POTS is predominant.

Can someone explain pulse pressure to me? And how to measure it?

Clairc I wish the best of luck, I am new to this too.

I was told my heart rate elevation didn't hit 30bpm at the first appointment - tilt table testing. . I was 28 bpm. But since neurologist has seen the bigger jumps with the 10 minute stand tests he does at office visits and the notes I've shown him. Does that make sense? Please educate me if I am confused.

I am just realizing this might be a part of my problem too, but dont have much information.

Is there an endocrinologist anywhere that treats hypoglycemia not related to diabetes?

Hi Everybody,

I have been reading from this website for quite awhile, before finally getting my validation today. I am grateful for all the education I received through reading your posts. It has been invaluable in understanding the care I am receiving. I am grateful. I would like to introduce myself in hopes of finding others in a similar situation, and so that my story will possibly be of help to someone else as yours were and continue to be for me.

My name is Amy. I contracted Lyme and Babesia in 1989 on Cape Cod. I was one of the fortunate ones that had EM rashes to tell the tale. However, with negative titers my diagnosis was delayed 14 months (which is still awful lucky). I am a Michigan native so my diagnosis and treatment began at University of Michigan. Despite aggressive and adequate treatment for Lyme and Babesia, I never regained full health. I lingered out there in a "chronic fatigue" state for years, chasing down random health problems that never came together to create a full picture. In 2008 I had a rough go with Influenza B and I took a hard turn for the worse. Symptoms were mounting monthly - low blood pressure, high heart rate, TIA-like episodes, optic neuritis, ptosis, left arm/leg weakness, GI pain, neck pain/inflammation, chills, low grade fevers, night sweats, sore throats, ear pain and ringing, cardiac symptoms, lymph node swelling and the list goes on.

Dysautonomia was diagnosed 2 years ago by Dr Vernino at UTSW in Dallas. I was slightly under the official numbers for a POTS diagnosis per my testing in the autonomic lab. Therefore, he began with a diagnosis of Orthostatic Intolerance likely caused by hypovolemia. As Dr Vernino followed me and collected more data I was eventually told I had POTS. I had the good fortune to meet Dr Levine last week, for another opinion on my complicated case. After initial findings he is sending me through to the next phase of testing, different than Dr Vernino has done. I am optimistic the August testing will shed much light.

Look forward to interacting, instead of lurking!!!!!!