Discussion in 'ME/CFS Doctors' started by maddietod, Apr 16, 2012.
sushi- i agree w what dr klimas said!
For those who were asking earlier --
Most of my bills for my visit to Dr Rey have cleared and it looks like the visit with Dr Rey, the exercise testing, and the labs are going to add up to about $6000, most of which will be covered by insurance. Of course, that cost will vary depending on what tests you need, but that's a ballpark figure for you, at least.
bigmama2 I've taken the ICC diagnostic criteria to 2 different docs, and they were both grateful to have it. This was published in The Journal of Internal Medicine, so has some credibility. The next time I see a primary care doc, I'll be taking the new ME/CFS: A Primer for Clinical Practitioners also. I can't include the link for this as I forgot to make a note of it! It's about 40 pages long, and written by several of the big names in ME/CFS.
Has anyone with Medicare seen Dr. Rey/Klimas? I hope to see her next spring, once I get back on regular Medicare, and would like some idea of what to expect.
Was just wondering if you ever got an answer about Dr Rey/Klimas taking Medicare as that is the only insurance I have and I've been debating on going there as I live in Florida and could drive.
They were not taking Medicare when I was there May 24, they will when it is all worked out.. They are working with BC/BS now too so that should be soon. All the blood work is filed though, mine was all done at the U of Miami, a ton of it. When Dr. Klimas came in with my folder my husbnd asked if that was all mine! I have never had anyone look at my immune system like that or look at all for that matter. I had EVB and HHV6 titers high.. My first visit showed only 5% of natural killer cells, a year later 25% now about 7 months later my killer cells are high NORMAL. Dr. Klimas started me on Imunivor the first visit. I take one in the morning and one at night and off weekends. The Imunivor she uses is from Canada and is $100.00 for a box of 100 so $1.00 a pill. She has not changed that dose. The shipping is outrageous though and doubled since I started, don't know why. It is $65.00.now. So at two pills a day and off weekends not too bad at all, hate the shipping. I had the tilt table test and that was $600 the first visit and it comfirmed POTS, which is under control now. Dr. K said when she saw my bp log I had it. There is a ton of paperwork to fill out before you go and believe you me they know all about you when you get there. I hd Dr. Masha Daily the first the for the physical and she did not have my chart but KNEW my case. I also had an in hotel sleep study, would not recommend that, it kept falling off my head and was a mess, had to have another here. Oddly it came out the same..mild. She does insist on a sleep study so if you have had one take the results.
The second visit Equilibrant was started and I am still taking that..one in the morning and one at night. It is ordered online and $49.99 so two a day is not bad with that. Dr. Klimas agreed with all my supplements, said not to change a thing. She is very big on Ubiquinol which I believe is better than CoQ10. I was low on estogen and testosterone but it is okay now with Esrtatest..1/2 pill. I do not like it but have to. I understand it helps the immuine system.
We have had enough Marriott points saved to pay for the hotel and it was about 5 minutes away. We had room service the first time and the day of appointment. WE always miss the stone crabs, hopefully next year..The clinic is next to the hospital and in the front building. I think hotels are cheaper in August it is so hot, not much differnt than here. We drove and took out time, a nice 700 mile drive, two days going but three easy fun ones coming back. I have overnighted my blood the last two times. Hannah sent a kit for that so results were ready when I got there. Madie, maybe you could ask about that and it would be there when you go instead of waiting a month for the results.
I had a test that Rich recommended called Ion Panel with 40 amino acids. Dr. Klimas was excited about it called it cutting edge. It was expensive but worth it. It showed a baterial infection in the small intestine.so now a stool test to find out what it is and what to treat it with. The test will come to me and I will forward to Dr. Klimas. Rich thinks the bacteria are eating my lunch so to speak. YUCK. He thinks that is why the methylation simplified program was not working well at the second testing to compare.
Dr. Klimas wants my doctor here to give me B shots for 12 weeks, I see him Wednesday. He goes along with everything. I had been feeling so much better but that test showed I was not as well as I though. Dr.. Klimas started Acyclovir 800 twice a day. She said of that it is generic but does the job and is gentle and not so toxic. She preferred that for me anyway. The test also showed high normal yeast so the dastardly Diflucan. So I have been feeling badly. I will stop now for a month. I am not sure how much of the feeling badly is Acyclovir though but I do know about yeast die off and it is ugly! I was surprised about that, so was she. It also flared the IBS. I thought that was better.
The prices have changed a little I think since I started with Dr. Kilmas, the initial was $639 and follow up was $239 and last month $269. I was there from 1:00-4:00. The first visit I was there all day. She will do phone consults after the first visit, she actually called me once after the first visit and did not charge.
I know I went to the right place and I think she is very reasonable and spends the time needed. I love to listen to her talk and tell such interesting things.. Hannah is a sweetheart and the whole staff great. They all love their jobs and like each other and it shows. I have never been in a doctor's office like that, it is more like visiting them. My physical was with a young man from Ecuador there interning, Dr. Klimas said she gets them for a year. So I have three different ones for that, all very friendly and do a good job.
Dr. Rey was there and popped in, what a character. I imagine she will stay at the Miami office. Dr. Klimas said they hope to move to Davie in August but it could be later and you know contrators so I bet later.
I cannot remember any of the other questions so ask away. I have been 4 times in all, went back a month after the first visit to get the test results and plan in person.
We were asked to be in a couples study one is stress management and the other couples with one sick. The computer will pick and we have not heard but I have saliva cotton sticks frozen to send when they are ready. One will be on the computer with video and they will send a camera and the over the phone. I hope we get the stress management.
Good Madie on making the appointment, I know I did the right thing. I waited too long, should have gone sooner but kept thinking I would get better, this is my second time. I think EVB was there off and on a long time. NO one would check for that when I was sick in the 90's, said it was too controvercial and everyone over 30 had it...well not with titers offf the wall. Dr.K suspects cocksackie but did not test for it, don't know why.
Oh this time the bad cytokines were down but still a ways to go and the good ones better but a fight going on.
I have not been posting, we were away Xmas and then kind of got out of the habit and guess I needed a break. So I am back! LOL
Good luck to those planning to go, let me know how you all make oiut.
Thanks to all who contribute the logistical information as many of us have spent way to much on, oh so little.
Marg, thanks for the update, please keep us informed, thanks again for sharing.
Marg: "I have overnighted my blood the last two times. Hannah sent a kit for that so results were ready when I got there. Madie, maybe you could ask about that and it would be there when you go instead of waiting a month for the results."
I asked about this, and Hannah said they much prefer to draw the blood there for all appointments, so it gets to the lab the same day. It sounded like for a first appointment, this wasn't an option.
Thanks for the amazing update! It's good to see you back.
Oh yeah, Klimas likes her blood fresh. Hannah suggested I send it down this last time. It was m nice to know results when I was there. Now, I have my work cut out for me and I thought I was doing so well. Who knew, wonder if the bacteria was always thetre causing trouble and eating my lunch.
I saw my doc here today, he is going to give me the B complex, no problem. I just hope they can find out what this unidentifiable bacteria is. I hope I do not have to have a culture. Chia does that though. I am on Oxymatrine but only 3 a day.
I still have not been to chat..a lot going on and our 13 year old grandson comes next week. from Denver. He is flying alone, cannot wait so he says. LOL He is a character.
Keep me psoted on your trip.
So I am all booked in for an appointment on 30th August, all my flights are booked and I've just made a reservation at the Kendall suites place. I've gone for a one-bed suite as I really want a kitchenette - I'll be jet lagged as well as the usual 'ME' sleeping problems so I want to be able to have a meal in my room whenever I want.
I haven't done the mega health questionnaire yet, start on that next week I think.
Maybe next August some of us will meet there!
I have a few questions for those that have seen Klimas or Rey:
-what kind of improvements are they seeing with their patients?
-it seems like klimas uses immunovir and equilibrant frequently, what other treatments do they offer?
-do you need to fax in a referral from your primary care physician before you make the appointment?
-are all of the patients really sick? i'm one of the milder cases - functioning at 60-70%, just wondering if I would feel out of place
What kind of tests do you have on the first appointment? Is it just bloods or other things as well?
Uni, I'm also one of the milder cases, but I still get a little sicker every year.
You have to bring the referral with you. I've made my appointment, but don't yet have a referral.
Have you been going there a while or as a new patient were you able to see Klimas rather than Rey? I was under the impression Dr. Klimas doesn't see new patients any more? I'm interested in that stomach thing, I wonder if I have something like that. What symptoms did you have that alerted you to possibly having that, was it just the methylation not working well?
Good questions, especially about the improvements and treatments, I'm curious about that as well.
Another question to add:
Is it best to get lab tests before you visit her? Viral titers, immune panel, NK function, etc. Or she order those and then follow up with treatment when they come back?
They look at the immune system like no one else at he U of Miami and file all the insurance. I know Peterson sends blood there. I had my blood drawn at the first visit. I chose to go back in a month for results and plan. You can get results and plan in a phone consult if that is easier. The plan whould be decided after seeing the tests. I was found to have high titiers for EVB and HHV6. I also have POTS and the tilt table proved that. It is under control with electolyte drink and low dose beta blocker patch. I stayed with one the in the morning and one at night Imunivor and Equilibrant. Acyclovir has been added. The activation is not much but maybe Acyclovir will take care of it.
I had a test that Rich suggested and it showed that even with all my supplements some nutrients were low. He felt that "something was eating my lunch" so to speak. I had a stool test and BINGO.. I have two parasites in the small intestine. One is a normal one that a person would get from a restaurant worker not washing hands the other is not human and is not known. I would guess if someone with a pet worked in food service it could pass that way..don't know. Food may have been contaminated. I did have food poisoning , don't know if that was it.
I sent the stool test to Hannah and asked for a phone consult. The reply was that Hannah was no longer there and one of the staff would be in touch. I was shocked! I will miss her, she helped me a lot.
I do have the protocol of Dr. Jon Kaiser so think that is the way to go. It is 20 days with two drugs and herbs and probiodics. I left all the information at my GP's office and then learned he was leaving for Spain so I hope he checks his desk before he leaves and he can get me started. He was at the hospital. I am excited about it since it could be the missing piece. I know it is not going to be fun but what is with this illness?
We lived in Europe for 5 years and I started having IBS a short time after we returned. I have no idea if I picked something up there or not. If something has been eating my nutrients no wonder I got sick. The B's are so low I am getting a shot once a week. Dr. K said for 12 weeks. The second methylation panel was not as good as the first and that was the first clue. So, for those not having luck with methyation maybe check the stool.
I will say the first test ION Panel with 40 amino acids was expensive but 18 pages long and showed a lot. Dr. Klimas said the test was state of the art.. Dr. Klimas and Rich both thought bacteria in the small intestine at that time. The second test showed the parasites. Insurance will pay for that one. If my GP did not check his desk, I will call Dr. Klimas. I go for my shot tomorrow so hope he let me the two scripts.
I know a lot is going on at the clinic with the move coming soon
I am doing better but still was not where I wanted to be and now know why. I must have some very healthy parasites. EEEK. I can do everyhting in the house and cook, had company for a week.. I am a good actress though and don't look sick. LOL I am much better than my first visit to Miami...I don't know how I did that one.
Yes, to go even if 70%, you could get to 90 or 100.
Thanks for your detailed answer. What was the stool test you got? There's so many different ones, and I'm not sure which ones are accurate.
You can also try a Google Site Search
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