Alice

I started the Paleo diet, non gluten, non diary, non a lot of things And it made me feel great!!

No sugar also works for me. I still eat a lot of fruit and veggies but those are 'good sugars'.

Gluten blows and diary give diarrhea and sugar raises my BP and HR.

So I eat a lot of fruit/veggies/nuts/meat/eggs and trust me, you can make a lot of snacks with those ingredients

Hi,

Does someone ever linked OI/POTS/CFS to the hypothalamus?

All the things the hypothalamus regulates are disfunctioning to me.

BP/HR/Sleep/Thirst/Temperature/Fight- flyght reaction and so on.

Hi Westernmass

I wasn't ill, but I found two little 'mosquito bites' on my arm that didn't recover. So I went to my docter, who worked for Docters without Borders a couple of years before, and he recognised the typical infection.

Leishmania could be a life threatning disease, that's why they gave me the amphotericine.

I have done some traveling in South America (costa rica and Peru) and although I don't remember getting sick at the time (except actually in Peru) every once in a while I wonder if I picked up whatever is causing my pots there.

How did you know you'd been infected- what were your symptoms? Did you get very ill?

They told me the same before I received the meds. But there was no other cure. They never tested my kidney and liver rates back then, but now they are normal. My FT4 T3 and TSH are also normal.

Well...my dad's dog was just dx'ed with protothecosis (a rare parasitic infection) and the vets want/have to use the medicine you mention. They have told us up front that the medicine can be as harmful as the disease, potentially causing liver and kidney damage. So I guess my question would be, "have you had a thorough evaluation of your liver and kidneys to rule that out as an underlying cause?"

Hi

In 2008 I went to Costa Rica, a fieldstudie trip with my Biology class.

When I came home I found out I was infected by Leishmania.

May 2008 they treat me with Amphotericin B and a lot of antihistaminics (because I react allergic to Ampho B ). This treatment stole almost my whole life. I was very tired (slept for 16 - 18 hours a day) and I was forced to quit school. Begin 2009 I had to make some money so I found a job at a Blood collection center, 16 hours a week. I could manage it, but it was harsh.

December 2010 I expand to 28 hours, until september 2011. I collapsed at work (BP 170/120 HR 150) and the doc at work send me home ("O, missy you just have to much stress"). I never recovered since then, it all get worse. April this year they put me on the famous (or shout I say notorious) TTT. And there was the diagnose: POTS. HR 70 -> 130.

Are there some people here who recognize my story or the meds they gave me in 2008?

I don't have any genetic link with POTS.

Since I was treated with Amphotericine B (2008), I became very tired. I managed to live like that for 3 years, until last year september. I almost collapsed at work, I work at a Blooddonor Centre. So the doc there measured me, BP 170/120 HR 150. She taught stress (like all the rest did in the beginning) and send me home.

4 monthes of research didn't gave me any hope. But then I went to a chronic fatique centre, they put me on the TTT. HR rest 70 -> upright HR 130. It took me about half a year to get dx with POTS

My legs were always itchy after taking a shower. This was before the POTS diagnose. But my dermatologist refers to mastcell activation (hyperactivation due to stress he taught, but after reading more about POTS I think it's related.) If it's to bad, I use some antihistamines and they seem to help.

I also have the same issues about restless, painfull, legs as Joyagh describes.