Dr to put it all together (east coast)

[Pink]

I have seen so many drs and I'm so overwhelmed with being sick.

My main issues are insomnia, heavy weakness, breathlessness & sick crawling twisting feeling in stomach & front of my head. Very dizzy and have fainting spells.
I also get headaches & pain/burning, have difficulty sitting & standing; as well as gastroparesis and eosinophilic esophagitis.

I saw Dr Enlander in NYC, a functional med dr, rheumatologist, a dr at local holtorf medical, an infectious disease dr, a gastroenterologist, an autonomic cardiologist & recently a sleep dr.

Most everything is normal except
Hhv6, reactivated ebv, maybe low parasympathetic response, and some vitamin/iron deficiencies plus my stomach issues.
I'm not sure about the mcas test results.

I'm taking valcyte, prescription iron, multi vitamin, align probiotic, protonix.
Nothing is helping and in fact I feel worse.

The sleep dr gave me slow release ambien & lexapro which are making me even sicker. I'm waiting for at home sleep study approval.

Please I need one dr who can look at all my myriad of results and guide me.
I am so anxious from being so sick and nothing working & being told to exercise, and that I'm just anxious.

Aside from my regular dr sho is sympathetic but doesn't know much about cfs, I had bad experiences with each of my drs.
I dont have strength or money to go to dr Kaufman.

Please help me.
I cant live this way anymore. I'm panicky and desperate.

 

[Pink]

I forgot that I have candida in blood but not in stool, took medicine for that and was on a very strict candida diet for 2 months that made me a lot sicker.

My lyme tests all showed only 1 active band but all drs say it's a false positive. I did have the medicine to treat it with no benefit.

Thyroid (incl antibodies & reverse t3) all normal.
Hormones all normal.
Adrenal bloodwork is normal.
Etc

 

[Diwi9]

@Pink - I'm sorry you're going through this panic at the moment. Probiotics can be good, but have you been tested or treated for SIBO? Even if you are negative on the test, a course of Rifaximin might help. I don't know if your functional medicine doctor would try to address that.

FWIW - I trialled Lexapro years ago before my official ME/CFS diagnosis and it was a disaster, but then I do not respond well to SSRI' or SNRI's. I take Ambien now when I have really bad insomnia. It helps. If you are on LDN, see if you can switch to taking in the morning, that is what my specialist suggested I try and it has helped.

 

[Pink]

Thanks @Diwi9 I asked my gastroenterologist about sibo she said maybe but not likely.
I haven't gone back to any of those drs (besides the gastro) bec I had very bad experiences with them.

I did very poorly on ldn. It made me so anxious and feeling very aggressive.

I have not done well on ssri either in the past. but the sleep dr put me on it now to try to regulate my sleep.
Ambien doesn't work for me any longer. I was switched to slow release ambien.

 

[Shoshana]

I wish I had something to suggest.
I hope that someone else does.

 

[Diwi9]

Thanks @Diwi9 I asked my gastroenterologist about sibo she said maybe but not likely.
I haven't gone back to any of those drs (besides the gastro) bec I had very bad experiences with them.

I did very poorly on ldn. It made me so anxious and feeling very aggressive.

I have not done well on ssri either in the past. but the sleep dr put me on it now to try to regulate my sleep.
Ambien doesn't work for me any longer. I was switched to slow release ambien.

That's interesting that Lexapro has improved your sleep. It's been many years since I trialled it, but I remember having disturbed sleep with the worst nightmares.

I tested negative for SIBO last year, but my doctor did a course of Rifaximin thinking false negative. On day ten of treatment, I experienced a 10 remission. It was wonderful. I later tried the herbal SIBO treatment with no success, in fact it made gave me horrible nausea...won't do that one again!

Have you tried Benadryl at night? It's part of my protocol, won't punch through horrible insomnia, but can assist on average nights.

 

[Pink]

No the lexapro is not helping my sleep at all.

 

[Diwi9]

No the lexapro is not helping my sleep at all.

Hmm...strange that you got prescribed that one since it is known to mess with sleep. I see people on the forum on various SSRI/SNRI's, they are just not possible for me...some of the worst experiences of my life.

Just out of curiosity, are you on a ketogenic diet? I am and it tends to exacerbate my insomnia.

 

[Pink]

No I'm not currently on any diet I eat the few bites that I can if I can. Today it was 4 bites of toast and 2 teaspoons applesauce.

 

[Dallase1]

I have seen so many drs and I'm so overwhelmed with being sick.

My main issues are insomnia, heavy weakness, breathlessness & sick crawling twisting feeling in stomach & front of my head. Very dizzy and have fainting spells.
I also get headaches & pain/burning, have difficulty sitting & standing; as well as gastroparesis and eosinophilic esophagitis.

I saw Dr Enlander in NYC, a functional med dr, rheumatologist, a dr at local holtorf medical, an infectious disease dr, a gastroenterologist, an autonomic cardiologist & recently a sleep dr.

Most everything is normal except
Hhv6, reactivated ebv, maybe low parasympathetic response, and some vitamin/iron deficiencies plus my stomach issues.
I'm not sure about the mcas test results.

I'm taking valcyte, prescription iron, multi vitamin, align probiotic, protonix.
Nothing is helping and in fact I feel worse.

The sleep dr gave me slow release ambien & lexapro which are making me even sicker. I'm waiting for at home sleep study approval.

Please I need one dr who can look at all my myriad of results and guide me.
I am so anxious from being so sick and nothing working & being told to exercise, and that I'm just anxious.

Aside from my regular dr sho is sympathetic but doesn't know much about cfs, I had bad experiences with each of my drs.
I dont have strength or money to go to dr Kaufman.

Please help me.
I cant live this way anymore. I'm panicky and desperate.

Let me ask you about the Holtorf doctor.... what did they do for you and which treatments did they try?

 

[Pink]

Ordered lots of bloodwork said to take vitamins based on previous bloodwork I brought in.
She was very insistent my vitamins were crucially low. However, 3 other drs disagreed.
I did try some supplements but saw no benefit & my stomach got a lot worse.

I was not impressed w her and I'm annoyed they want a lot of money just to discuss my lab results so I haven't gone back.
Fyi, this dr was not at holtorf in California.

 

[Dallase1]

Ordered lots of bloodwork said to take vitamins based on previous bloodwork I brought in.
She was very insistent my vitamins were crucially low. However, 3 other drs disagreed.
I did try some supplements but saw no benefit & my stomach got a lot worse.

I was not impressed w her and I'm annoyed they want a lot of money just to discuss my lab results so I haven't gone back.
Fyi, this dr was not at holtorf in California.

I’d definitely see a functional medicine doctor with a reputable past. I also heard from people who say that the Holtorf people are on a hunt for Lyme disease. How long have you been on Valcyte and who prescribed it?

 

[Pink]

The valcyte was given by my primary care dr.
She's doing what she can but her knowledge is limited.

I had hoped holtorf would be able to put it all together but as I said I wasnt impressed.

 

[Pink]

Sorry forgot the valcyte is about a month.

 

[Dallase1]

Sorry forgot the valcyte is about a month.

I’d be careful on that. Seems like LDN may be a safer choice and a good option for you. Have you heard of that? It’s cheap too.

 

[Pink]

Ldn was awful for me

 

[Dallase1]

Ldn was awful for me

Why? How low did you start?

 

[Pink]

Heart racing, terrible anxiety feeling very sick overall. I tried it on more than one occasion. Cant recall the dose.
It's a family thing, my mother also has very bad side effects from any medication at a and so do i

 

[Mary]

@Pink - some of your symptoms may be due to the protonix - see here for some of its common side effects, including headaches, insomnia, dizziness, nausea, etc.

I've heard good things about Dr. Susan Levine in New York - you can do a search on this board for people who have seen her. Also, if you can get to Florida, I would try the Institute of Neuro Immune Medicine, headed by Nancy Klimas who is extremely well-regarded in the ME/CFS community. http://www.nova.edu/nim/clinic/index.html

 

[Pink]

@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.