Dr to put it all together (east coast)

[Mary]

@Mary thank u that is interesting.
I didnt know that about protonix.
I called both of those drs, they're not taking any new patients.

I just looked at the website link I posted for the Institute of Neuro Immune Medicine and the home page says they are accepting new patients. And I just called the number listed there - 954-262-2850 and their automated menu said they are accepting new patients. You probably couldn't see Nancy Klimas, but there are other doctors there. So I would try calling them again when they're open.

I'm just guessing here, but it seems right now your worst problems are gastrointestinal. Obviously if you can't eat hardly anything, you're not going to be able to absorb nutrients properly. I looked up eosinophilic esophagitis and read that it's autoimmune and linked to allergies. Have you been tested for food allergies or celiac disease or tried going gluten free? Celiac disease can really screw up your digestive tract. You've probably been all through this but if you haven't, that's where I would be looking.

 

[Pink]

So interesting bec I called a few months ago, but maybe things changed.
Yes I was tested multiple times for celiac and went gluten free many times. I actually got sicker.
I went on a very strict candida diet and gained a lot of weight somehow.
As far as allergies I was tested for some.

 

[Pink]

As far as what symptom is the worst it depends day to day.
The weakness is always here.
Sometimes it's the stomach.
Sometimes it's the dizziness.
The insomnia has gotten very bad lately.
ETA my anxiety is very bad now as well
I feel like I'm a lot worse since I started valcyte.

 

[Mary]

@Pink - well, you might have to stop the valcyte. Not everyone can take it. You can read about its side effects here.

Many people can't tolerate SSRIs so the Lexapro may be making you feel worse too, see its side effects here.

I don't think I could take any of the drugs you are. I'm not telling you to stop them, but rather to educate yourself about their effects and then make an informed decision.

And you said you felt worse when on the candida diet - again, you might have been reacting to the drug you were given to take; e.g., diflucan, a common one given for candida, can have these effects. I had trouble with candida 15 years ago and I took virgin coconut oil - it was very effective for me, without the negative effects of diflucan. But it was very powerful, I had to go very slowly and work gradually up to 2 tablespoons a day. It took about 11 days as I recall. I did have a strong herx reaction with it.

You mentioned MCAS testing earlier - I don't know anything about MCAS, have never had to deal with it, but many people on this board do who are very knowledgeable and so I would strongly suggest you get your test results and tag someone - e.g., Gingergrrl is extremely well-informed about MCAS.

Good luck - I hope you find some help! - and I would definitely contact the Institute for Neuro-Immune Medicine in Florida http://www.nova.edu/nim/clinic/index.html, and see what they have to say.

 

[Pink]

@Mary I was aware of the side effects however sometimes theres a benefit to dealing w side effects to ultimately have healing.
I do recall that when i originally called klimas in Florida they were unable to tell me if my sort of cfs is what they deal with or not. I would need an appointment for that, if one becomes available.

Honestly I dont know if I can put in the effort and money for a maybe.

 

[Mary]

was aware of the side effects however sometimes theres a benefit to dealing w side effects to ultimately have healing.

You're right of course. It's just that digestive problems and dizziness were almost universal "side" effects of your drugs and they seem to be some of your worst symptoms, so I didn't know if you were aware that the drugs you're taking may be part of the problem. But I'm glad to hear you're aware of this.

I had severe problems with insomnia after tapering off a 10-year lorazepam habit for sleep. I tried trazodone and hated it, and I can't tolerate anti-depressants, and after a LOT of experimentation finally have got a sleep cocktail of herbs and magnesium and amino acids which is working (at least for now! fingers crossed) and they don't leave me feeling drugged or hungover etc.

What I'm trying to say is that very often there are non-prescription drug ways of dealing with health issues which can be just as effective as the drugs but without the negative effects. But again, I'm not advising you to stop what you're doing, I just wanted you to be aware how these things may be affecting you if you weren't already.

 

[Pink]

Thank you so much @Mary

 

[Gingergrrl]

@Pink I have been thinking a lot about your situation, and apologize that I did not get to read this entire thread, but I am wondering if the extreme "anxiety" you are experiencing is from the Valcyte? I tried Valcyte in a good faith effort (at the end of 2014/ very early 2015) and it gave me severe akathisia. Akathisia is usually associated with anti-psychotic meds (which I have never taken) but I got true akathisia from Valcyte, which shocked both myself and my doctor!

The akathisia was unbearable and you feel as if you want to run miles (but I was wheelchair bound 24/7 at the time and could not even stand or walk which made it worse). It's a feeling that you would jump off the roof to make it stop. Ultimately, I could not tolerate even 1/64th of a Valcyte without some level of akathisia. When I stopped the Valcyte, it disappeared and never returned.

I am NOT anti-medication whatsoever (and am still doing both IVIG & Rituximab and take many other meds) but I could not tolerate Valcyte at any dose. We are all different, and it may not be the cause of your anxiety, but I just wanted to mention it b/c you have been on my mind and thought it was worth investigating. I hope you will find the right doctor and meds that bring you the relief that you deserve.

 

[Pink]

Crashing badly but appreciate ur post @Gingergrrl
I have anxiety for years that never did well w meds; but for sure the valcyte is exacerbating it.

 

[Gingergrrl]

Crashing badly but appreciate ur post @Gingergrrl I have anxiety for years that never did well w meds; but for sure the valcyte is exacerbating it.

No worries and no reply needed @Pink. I hope you can get some rest tonight and feel better tomorrow.

 

[Pink]

Forgot to say I stopped valcyte vitamins and anti anxiety.
Still woke after 4 hrs sleep w sharp stomach pain and racing heart.
Didn't fall back asleep
Dont understand what's happening
Very scared

 

[Dallase1]

Forgot to say I stopped valcyte vitamins and anti anxiety.
Still woke after 4 hrs sleep w sharp stomach pain and racing heart.
Didn't fall back asleep
Dont understand what's happening
Very scared

Find a functional medicine doctor. I agree with the Valcyte. It sounds like side effects. Find someone now! I recommend Mark Force in Oregon. He has changed my life, and doesn’t use “antivirals” because for the majority of people it isn’t the answer.
One supplement that helped with my energy is ADB5 by Biotics. I take one and chew it up every hour from when I wake up till about 3:00pm.

 

[Pink]

@Dallase1 I saw a functional medicine dr; and the dr at holtorf is a functional md.
I spoke to her again today, total waste of money and time.
She said take more vitamin d than I'm already taking.
And re-test for lyme (I've tested at least 3 times for it).
She had no other ideas about why I'm so weak and have worsening pem.

I asked if the reactivated infections can be causing this she said no. She didnt even agree that parvo & hhv6 are active infections; only ebv is active now according to her.

 

[Dallase1]

@Dallase1 I saw a functional medicine dr; and the dr at holtorf is a functional md.
I spoke to her again today, total waste of money and time.
She said take more vitamin d than I'm already taking.
And re-test for lyme (I've tested at least 3 times for it).
She had no other ideas about why I'm so weak and have worsening pem.

I asked if the reactivated infections can be causing this she said no. She didnt even agree that parvo & hhv6 are active infections; only ebv is active now according to her.

Get a new doctor who isn’t on a constant witch hunt for Lyme disease. It is way over-diagnosed. I saw a couple who told me I had it but when researching and going to a legit infectious disease doctor I didn’t. Parvo and HHV6 are extremely common. Do you have fevers, swollen lymph nodes? What is your ability to tolerate foods like?

 

[Pink]

Thing is I didnt think holtorf is so into lyme disease but I guess each dr is different.
No fever or swollen nodes. I cannot eat or digest food .

Honestly I spent so much money already. I'm so frustrated.

Called Cornell, they are just starting to research cfs.
Called a dr at nyu but he said he doesn't do phone interviews. I just want a basic idea of how you treat cfs.....

I am so sick and tired of seeing so many various drs.

 

[Pink]

Oh and apparently my adrenals and thyroid are fantastic.... even though my cycles are all over the place and I have so much anxiety & stress that I thought for sure my adrenals are wrecked.