Discussion in 'ME/CFS Doctors' started by PhoenixBurger, Jun 5, 2013.
Just wondering. Thanks.
You can buy online as supplement from Dr Elander in his website. You can divide dose to start low and put the rest in distilled water in fridge.
Thanks Inester. ! Still curious about Rey.
Yes she does. And it has bascially eliminated the burning I use to get in the front of my shins by the end of almost every day.
Thats good to know. I met with her last week finally. It was such a strange sensation to speak to a doctor who actually has a clue about medicine. Truly a surreal experience..
Thank you posting this.That is most refreshing to hear.
Could you tell me what to expect when I go. I have waited so long that I just want to function and have energy again. I all ready started ldn and getting my viral load down. But thyroid and Adrenals are a issue. I Will bring labs with me hoping i can get a head start. Will they start testing I would love to try the NK booster shot I heard about. Did you have to do the exercise test? At this moment i would go in to a crash.Thank you for any info. Totally grateful……..
Nothing to be curious about.
All she prescribes is: equilibrant (buy online), immunovir (just buy inosine), and LDN (any M.D. can prescribe this really). That's it.
I had violent reactions to all of those at tiny doses and wasn't offered anything else. I was constantly told that they hadn't seen this or that before and that "it's normal to feel bad at first, eventually you'll feel better" and I just got worse and worse.
Also my friend went down there for a month and hasn't left her bed since. She tried all those things plus antivirals, and has only gotten worse. Her viral titers went up.
I guess some people have good experiences and some don't but it's important to hear both sides. I was only given the good side and left after having such a horrible appt. that I basically had a nervous breakdown in miami (I do not like that city).
But it's mostly possible that i don't have CFS. The problem is Dr. R didn't rule out other things. Turns out lupus has never even been investigated, there is neuro-psychiatric lupus, CNS lupus................ etc. etc. They just didn't look into other things, no CFS doctor has for me.
Right now doctors think I have some form of autoimmune dysautonomia, PANDAS, and possibly autoimmune encephalitis. So important for these doctors to look at other things............. I was referred to some sleep neurologist down there and he just talked about sleep hygiene, my sleep hygiene is actually good doesn't change any of the horrible sleep problems I have.
Not true. That is absolutely NOT all she prescribes. It may be all she would prescribe for you, which is an entirely different matter. My daughter and I have quite a few different prescriptions from her and didn't get all those you mentioned. She prescribes based on your individual tests and symptoms.
It's too bad Dr Rey couldn't help you. As you say, it may be that you don't have ME/CFS, in which case it's less surprising that multiple ME/CFS specialists can do nothing for you. It sounds like you have a number of health problems not directly related to ME/CFS. Hopefully you can get some of them under control and feel better. Then it might be easier to sort out whether you actually have ME/CFS.
Eliminating some of the obvious possible reasons for your symptoms, such as lupus, should have been the job of your local primary care physician. That's one reason Drs Klimas and Rey want a referral from your local PCP.
FYI, viral titres will sometimes increase with antivirals if the patient's immune system was suppressed by the virus. The patient will also sometimes feel pretty awful as the immune system comes back online and goes after infections it wasn't strong enough to fight previously. It's not the most common situation with antivirals, but it does happen.
I'm just offering my experience and I believe it is what I should do. I was only given very hopeful experiences.
I have had several friends go down there and we were all offered the same 3 things except one of my friends was given an antiviral for mono and like I said, her titers got worse and she was basically told there is nothing they can do for her just like with me. We all had the same labs done, I ended up paying thousands of dollars for them out of pocket (well my mom) and all FOUR of us, with vastly different results were offered in this order: #1. equil, #2. immunovir, #3. LDN. Also I was not given samples for immunovir like other people so there was $300.00 down the drain.
Do I think I have CFS? Unfortunately yes. I wish I didn't. But I am "severe" on the spectrum and get insane reactions to everything. Can't depend on GP's, mine was horrible and most are.
My first appt. went so horribly, I can't even describe in words the disappointment, that I did have some sort of a nervous breakdown and my mother and I left miami that night as I was passed out in the back seat after crying for hours. It was rushed, too quick, the secretary was unbelievably rude to me on the phone and in person (she's no longer there), and I felt completely hopeless. My questions weren't answered.
Also, with my friend she said she didn't need a tilt table test she could just doing something there in the office (WHAT). I completely disagree with this! Does Dr. R do tilt table tests? I don't even know, not with me or my friend.
The other thing, I would bring up issues and she would just say "go see a sleep neurologist" as if I hadn't done that like 10 x's before. Or mention dysautonomic problems and "go see a dysautonomia specialist" as if they are just around the corner. I thought that CFS specialists were supposed to cover all of those problems, I don't have the money nor transportation nor health to go off seeing more specialists, I really wanted them to try and treat everything as a whole.
This is my experience. We ALL have different experiences. Some people love a doctor while others, not so much. That is normal. It would not be fair of me not to mention these things that I have heard from other people too. Please don't bash me, I'm really sick, and I've been completely honest with how it went down for me. If you don't like it, I can't change the past.
Also it is there job to say "maybe you don't have cfs", "maybe you should look into other things". Maybe you should look into this: ___________.
I would totally disagree that she prescribes based on your "individual tests and symptoms". I would put my hand on a bible and take an oath to disagree to that. When my 4 friends and I compared our labs, compared our symptoms (through email), SO DIFFERENT yet we were all offered the same things and given a piece of paper with the same supplements. I just disagree based off of personal experience. Also while in the waiting room I overheard other patients talking about how immunovir made them "crazy", "depressed", "incredibly moody"...................
I can say that I've heard differently about klimas, heard good things but who knows. In the end, I don't think any of them have a CLUE what causes cfs or what to do. Immunomodulators can make people crazy sick and way worse, it's quite a russian roulette gamble.
With the 3 things I've mentioned I still think it's important to let other users know what else she does offer instead of just saying I'm wrong. Naturally it would be good to discuss what else she's done for YOU or your loved one.
It seems harsh but I wish someone had been more honest with me before I blew all my money and hope going to miami. This is a truthful experience from a patient who has seen hundreds of doctors.
P.S. My mom is an R.N., a very caring and compassionate nurse who is really good at her job, and even considering going into psychiatric nursing. She would back up everything I've said here and probably have more to add, she had the same feelings and we often don't agree on things.
No need to respond to me, I've got enough to deal with. Just discuss your personal experiences and the varying treatment your were offered.
I get this too - mine seems to get better when I take magnesium. Any idea what causes it?
Maybe that is where the virus(es) are hanging out?
You can also try a Google Site Search
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