Discussion in 'ME/CFS Doctors' started by madietodd, Apr 16, 2012.
I want one anyway!!!!!!!
I did this in the hotel (Ares) on my first visit. I had a time with it not staying on my head, did it a second night and still trouble. I was getting the hang of it by then but it kept waking me tell me to adjust it. I bet they had a big laugh about all we were saying adjusting it. We were told it picked up everything.and there was a lot of $%@^+ LOL I came home and had an in the hospital sleep study. Guess what, even with all the problems with the result was the same, mild apnea. The in the hotel study was not paid for by insurance. It was $600.00, if I remember correctly. The in the hospital was paid and it was $3800.00 and every penny paid.
Madie did you get an answer at Klimas's. They were to get back to me and have not. The e-mail said the staff would be in touch. I have not tried again.
My husband was with me and helped me it. It was the talking Ares that kept waking me up telling me to adjust it. I am not sure if I could have got it to stay non my hdead without him but maybe more time to study it all would have helped.
Are you asking if I've heard back about Ares? I just emailed them, and of course it's Sunday.
I think we are different too. I do not like the CPAP tried three, all blew air in my eyes, finally tried a very simple one that directed the air down but if I wake up I take it off. I sleep better without it. I am due to see the sleep doctor, CPAP is plugged into the phone line so he can read everyhting I do. Sometimes I just have to take it off, I really wonder if I need it. Dr. K wants me to try some Buteyko (sp) breathing. I watched some videos on You Tube. They were not much help. I may have to get the DVD. There are no practioners of that aroud here and they do not tell the whole story on the videos.
I think we are shallow breathers because out muscles and tendons are so tight. When I was at the sickest point I would catch myself holding my breath.
Yes, I was asking if you had heard back. I inagine they are behind and the move coming up. I saw a couple posts of not getting them to reply. My message was that one of the staff would be in touch. That was three weeks ago. I did not try again.
I'll email them every day, then. Hannah didn't respond to 2 of my emails (yes, while she was still there), so their system maybe isn't well organized. I could also call my (new) doctor here and see what she says.
I just got a call from Dr. Rey (telling me not to do a sleep study before my visit). She said that Hannah is no longer with them, and has not been there for over a month, and I should stop using that email address (email@example.com).
She said I should call the office - 305-595-4300 - if I have any further questions.
Also, I received all of the questionnaires in an email. That email said to send my completed forms back to that address (firstname.lastname@example.org), which I did. Dr. Rey said it's much safer to make copies and bring them with me to my appointment.
For people preparing for their first appointment, I'd advise printing the forms and then completing them. They're a pain to do on the computer.
I give Dr. Klimas an A+ for her incredible diagnostic lab skills. But as with the other docs, there isn't anything really effective they can give you. I took Immunovir, VitD, as prescribed, and didn't notice any change. Also, she prescribed Doxepin for sleep, which is an old tricyclic anti-depressant that has sleepiness as a side effect. It did not really give me restful sleep, and you end up taking more and more every night. It's just as addictive as real sleep meds. So I dropped it.
Other stuff offered me, like Valcyte (for $2000/month!!) and Xifaxan, I just turned it down. Unless there's a known pathogen, I don't do antibiotics. I turned down the Ares sleep machine because I knew I would not be able to sleep with a plastic box stuck to my forehead, and the results would be meaningless. Oh well, she's just trying to help...
You are going to be out of pocket at least $1000, all told, after a visit there. I would say it was generally worth it, because she diagnostically confirmed an organic illness in my body. When I show the lab results to ordinary internists, they believe I'm really sick. And that's a huge help. But I'm not going back for further "treatment" because there is no treatment really for CFS. Now we just wait.
I don't think there's a cure for ME/CFS, but I firmly believe that treatment of symptoms can improve quality of life for a lot of us. What treatments work seems to vary among us, but I wouldn't say there's no treatment. Many treatments take some time to work. Other times we have to try several different treatments before we find the one that works for us. I'd say there's few, if any, quick treatments, but there are treatments.
There has not been a magic bullet, single pill treatment for me. I've had to take medications to treat HHV-6, EBV, Chlamydia pneumoniae, and coxsackie B. Each one has given me some improvement. Valcyte was the biggest one, but they all helped. None of them alone would have been enough.
Then there's treatment for NMH, tachycardia, low blood volume, etc. Some people have to try different treatments before they get the effect they need. The same is true for sleep meds and pain meds.
I wouldn't give up on treatment too soon, just because there's not a quick fix.
I saw Dr.Klimas several years ago and she was an awesome person and doctor who really seemed to care. but I never got better in any meaningful way. I had a ton of testing which was mostly covered under my PPO ins, and I was positive for many viruses and had poor immunity. But in the end, it just kept me busy but getting no where. I think she's as good as you can possibly be using the older allopathic medicine treatments.
My current treatment has gotten me to 90% in 20 months. its no quick fix but I'm glad I'm outta bed!
Angela, do I remember correctly that you've been concentrating on adrenal support?
There are some many things going wrong in cfs/me and also each patient has different things going wrong. We have to slowly treat each abnormality the best we can, some treatments wont show any obvious effects until other dysfunctions are treated. some treatments we can tolerate until something else is sorted. It is a jigsaw puzzle and u have to put the right pieces in at the right time i think.
One example i had was that i tried valcyte and kept getting incredibly worse and had to stop. I tried it a few times with no success. At the time i had ongoing sinus problems and i was also trying to sort out my adrenals by juggling different hormone(pregnenolone/dhea) which took me time to get it right. Eventually after being on antibiotics for awhile(ended up being 6 months) my sinuses started to improve. Adrenals, i ended up just sticking with a low dose of dhea capsulse(did try creams but too strong) and slowly increased it to 25mg a day, testing showed it was in the mid range at this dosage. I dont know if it was coincidence or not but i think not, but once these were sorted i tried valcyte again and this time had no issues with it and i started to improve. So i got lucky and put the right pieces of the jigsaw puzzle in at the right time. I still have a couple pieces missing but slowly getting there.
What treatments did you try when you were seeing Nancy Klimas?
My focus has been on methylation and nervous system nutrition and treatments. My doc combines several different leading protocols but doesn't seem to get caught up in the mess of thinking that only one approach is right. I like that she changes tactics when needed and doesn't hesitate to ask me what I think or how my body responds to certain things. I think medicine can be an amazing field when applied properly and that should always include listening to your patient.
The treatments with Dr. Klimas included immune, viral, adrenal, and POTS related protocols. I didn't respond but others have gotten better. The travel nearly did me in too, though. But I don't know of anyone who recovered like I am now but I'm sure there must be some. I do really think she does the best she can but is sorta stuck in that allopathic mind frame of big pharma being the answer for everything. I doubt any drug program is going to heal many of us. Its going to be a combination of things and I'm sad to say that it'll never be an easy one.
Less than a month to go before my first appointment with Dr K and I'm hoping that someone reading this might be able to help. I have been trying for the last three months to get an answer to a simple question before my visit:
Are there any useful blood tests my doctor (GP, PCP) might be able to get done before I go, because that will save me a lot of money.
Unfortunately despite many emails (including to Hannah before she left) and many many messages left with the receptionists for Dr Rey/Klimas I have had no response. Zip. Nothing. Its rather irritating but of them but I now I will just have to make up some things to ask my doctor for so basic things, nothing too fancy like - vit D, iron, magnesium, crohns disease. Any suggestions peoples?
PS good luck Madie it must be your turn very soon.
I had D, B12, TSH, T3, T4, Lyme but they repeated that one anyways.
It's awful that they're not getting back to you. I wonder if you could just ask which tests could be done locally, once you're in Miami ? It takes them a month to get all the results and do the second consultation. Hopefully, that's plenty of time for you to get work done by your doctors and emailed to them.
I'll try to remember to ask the blood tech when I'm getting my draw done. If you don't mind, it might be helpful if I have your name (PM) in case I get into a more-than-theoretical discussion about your question. Also, is your appointment with Dr. Klimas? [Mine is with Dr. Rey.]
My appointment is on Wednesday!
I just got back from seeing Dr. Rey. She's fabulous. The whole process took 2 hours exactly, despite starting a half hour late. I probably spent an hour of that time with Dr. Rey.
They only draw blood there for the viral testing that normal labs don't do - 4 vials. The rest is put on a lab order to take to your own lab. The results from Quest should take about 2 weeks, and Dr. Rey said she'll call me immediately about any issues that show up. The specialized testing takes 6 weeks, and I've scheduled a phone consult to get that information.
I got a little bit of treatment information that's worth sharing. My blood pressure is higher in bed than when I'm up. Dr. Rey said (1) drink a half to 3/4 gallon of water a day and salt all of my food to taste, and (2) take my blood pressure 3x a day and never let the top number get under 100. If I'm unable to do this with the water and salt, she wants to know about it in 6 weeks.
Also, for my sleep issues (can't fall asleep or stay asleep) she has a specific anti-oxidant regimen that takes 4 weeks to build to maximum doses. If in 6 weeks my sleep isn't much much better, then I need a neuro sleep study. I'll type that out if anybody is interested.
If anybody wants to hear more about the clinic, or the hotel I'm staying at, or my experience getting to the hotel from the airport without a car - let me know and I'll tell all. Basically, it's not all perfect, but it was surprisingly easy. And everybody at the clinic is smart, kind, and friendly. I had a great time.
Congratulations! You did it!
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