Klimas cfs clinic

[leaves]

if you get an appointment at www.cfsclinic.com youll get to see her pretty soon. See my first post in this thread for details about the costs and the tests they do!

 

[Robin]

Leaves, thanks for sharing your experience with us! Keep us posted on how you do with the treatments; I hear of a people getting a positive modest to moderate benefit from the imunovir.

I'd like to go see her but I'm severely ill and unable to travel. I just emailed her clinic to see if she might do a tele- or skype appointment with my primary care and me; maybe I can get bloodwork done and she can consult or something. I'm not sure if she can, legally, without examining me but it doesn't hurt to ask. I haven't heard back, yet, but I'm hoping!

 

[leaves]

oh they are notoriously hard to reach. Just keep spamming them. BTW dr Klimas is out till Sat as her daughter is getting married ...

 

[goldiland]

Aquariusgirl, I am 100% sure the wait list is close to 1 year. In April when I saw Klimas/Dr Rey, the next appoitment for new patient was February 2011. If you want to confirm, go to University of Miami website and call for new appointment.

Klimas is basically rotating every other visit with her existing patients with Dr. Rey. Dr. Rey was hired in Jan/Feb and I actually saw her at my last visit in April. She was also shadowing Klimas at my previous appointment to get to know the patient base. She's got a very good reputation but she is definitely not Klimas. (although who is). That being said, she is going to run the same tests as Klimas and prescribe the same treatments as Kliimas. I also know for a fact that she is working hand in hand with Klimas on new patients.

It is definitely not a half day workup with tilt, etc.... you may get a script for a tilt if they suspect you have orthostatic intolerance or a script for a sleep study, etc, but the consultation will be history, physical exam and likely giving blood. You will have a follow up via conference call/video conference in about six weeks once they have the results of the bloodwork.

As an FYI ... we all love Nancy but the administrative aspect (appointments, getting test results, getting anyone to respond to you if you have a question), of her practice is not the best.

 

[Andrew]

In the mid 1980s there was an outbreak of an illness in and around Lake Tahoe. The CDC named this illness Chronic Fatigue Syndrome. Now they are trying to cover their asses at the expense of patients. Instead of admitting they made a mistake and correcting things in the best interests of the patients, the move the definition even further away from where they had it before. And now it no longer describes the Lake Tahoe cohort, which is the cohort to which they applied the name.

In the book 1984, the protagonist Winston Smith's job is to rewrite historical records to fit the political needs of Big Brother. The CDC is doing the exact same thing. They deny that the term "Chronic Fatigue Syndrome" was given to the people in the Tahoe cohort, even though the real historical records show it was. They ignore that they have been given millions to study this. They ignore that they told congress that they were studying that illness. And now instead of having to admit that they botched things for three decades, they just say "well, CFS is a different illness. It's not those people at Lake Tahoe. It's not the rest of you who are like them. You have something else. And we don't deal with that something else, because, well, we choose not to comment on that. So screw all of you sick people out there. Don't you realize, the CDC is not about illness, it's about CYA double-speak politics."

 

[leaves]

Goldiland,
Klimas has 2 offices; one at uni of miami and also her private one "cfsclinic" that LAST one gets you an appointment very quickly, but the visit is out of pocket (tests not though)

 

[goldiland]

Yes... if you want to pay out of pocket, you can go to the clinic and see a Klimas trained physician. If you want to see klimas at U of M, it is a year to get in to see Nancy and much less time to see her associate Dr. Rey. U of M takes insurance.

 

[leaves]

Yes! But you do get to see Klimas at the clinic

 

[girlinthesnow]

Aquarius girl, I second leaves' comments. If there is any way (beg, borrow, etc) you can find the money to go to the Kendal Clinic I would go, it is a wonderful place. It's still possible to get in quite quickly ( within 8 weeks) but as more people find out about it that will change, probably soon. When I was there in January I met a woman who was severely affected. Her whole family had travelled to the clinic. Her husband's comment was 'we would have done anything to get here but soon it won't be possible to get through the door'. Sadly this is probably true. One good doctor can only be split into so many pieces.

 

[goldiland]

Aquarius girl... I've been a patient of Klimas for over 10 years and she has brought me back from a bad place on two seperate occasions. After the first recovery, I was able to work in a senior management position in a Big 4 public accounting firm for close to 9 years on a full time basis and live a reasonably normal life. I pushed myself way too far, had a bad relapse and she has now gotten me back to around 80%. I am 100% convinced that this in one of the few doctors in the world who actually exceeds her reputation. You shouldn't expect miracles because there are none with this illness.... very few people are "cured". However, this woman can and will get you feeling significantly better and allow you to be functional and active and obviously that is what we all want.

My own opinion is that if you have the money, get on the next plane and see Klimas at the clinc. If you have insurance and don't want to spend the $1000-$1,500 it sound like the clinic visit costs based on Leaves posts, I would definitely go see Dr. Rey at U of M, get started on a Klimas approved treatment plan (immunovir, etc) and get on the UM waiting list to see Klimas in the next 10-12 months.

 

[aquariusgirl]

I very much appreciate all your input, but I'm undecided how to proceed.
It seems like her protocol is immune modulators, (Immunovir/LDN), maybe some sleep meds (Xyrem....been there, done that. Awful experience.) B12. (been on that for years) & then maybe anti-virals?
I've done tilt table tests, sleep studies, DNA tests. I'm looking to go on LDN anyway.
I've got a local physician who will prescribe Valtrex, which right now is the only drug I feel comfortable using.
So before I shell out another couple thousand dollars (including air fare, taxis, possibly hotel) I'm trying to figure out exactly what I would get out of this appointment.
I think I would get someone who really understands the immunological side of it and can order and monitor the right tests. That brings me back to Immunovir/LDN/anti-virals, right? That's what she has to offer me?
I need to go back and re-read some of the posts on her protocols.
I understand you have to spend money to get the right txt, but I've been to see some big names before and had nothing much to show for it.
In fact, my S.O. rolled his eyes when I said I was going to Miami to see a-n-other doctor.
I am not as skeptical as he is, but I want to have realistic expectations about how the team down there can help me.
But I guess I better make up my mind quick or I'll get stuck on a long waitlist for her private clinic.....

 

[aquariusgirl]

Ok, just re-read some of the posts on this thread. I see she also looks at the gut and hormones (but then refers u to an endo) and she is using oxymatrine ...so her txt is broader in scope than I thought.
I would love to see an endo who knew how to treat CFS, but she farms that part out...
I just don't know if there are any endos who know how to treat CFS.
Ok, I'm waffling.. so I'll shut up.

 

[goldiland]

Aquariusgirl,

You are dead on. Klimas is an immunologist and her primary focus is on the immune system in my experience. All of the things you mention (LDN, oxymatrine) are very, very recent in her practice, although she is quite open to using any supplement/drug which has double blinded scientific research behind its efficacy. Her focus is going to be on getting your immune system to function better.... increase the NK activity, decrease the cytokines and viral titers and shift the immune response away from TH2.

As far as the hormones and gut, she does look at these things if they are factors.... I would definitely recommend getting a good endo though. Get the endo to run tests and give the results to Klimas... Klimas is not going to order those kinds of tests or monitor that kind of stuff for you. You don't need any other doctor who understands CFS... you just need good specialists who can help you manage the secondary damage that CFS does to endocrine and automonic nervous systems.

I would also tell you that Klimas is not a huge supplement advocate without significant research supporting its need in CFS... The only things she recomended for a long time supplement wise were a good multivitamin and CoQ10. She has also recently begun promoting immpower (medicinal mushrooms) which have a lot of clincial reserach in Japan supporting increasing NK cell activity.

Hope some of this helps but you are already on the right track in your assesment,

Regards,
Gregg

 

[leaves]

Ok, just re-read some of the posts on this thread. I see she also looks at the gut and hormones (but then refers u to an endo) and she is using oxymatrine ...so her txt is broader in scope than I thought.
I would love to see an endo who knew how to treat CFS, but she farms that part out...
I just don't know if there are any endos who know how to treat CFS.
Ok, I'm waffling.. so I'll shut up.

Hey Aquariusgirl.

Yes but I dont know if she does that with everyone: I am pretty extremely messed up endocrinologically, so its hart not to pay attention too.
I am still looking for such an endo too. sigh... She promised to find me one, but... has been busy I guess...

 

[srmny]

Much of the improvement in my health I credit to aggressive treatment by an endocrinologist. If you have a teaching hospital near you try getting an appointment with the department head. If your doctor can help you by giving you a referral your CFS heath history will be included in the referral. If you get an appointment on your own you might want to just present with your symptoms and not even mention CFS. Years ago Dr. Levine referred me to the head of the of Endocrinology at Columbia Presbyterian. He treated me until I left NY and made it clear that he thought CFS, NK cells, HHV-6, EBV was all nonsense. But he treated me anyway - generally my head was on his desk during our visits and most of the conversation was directed to my husband. Once I was tested and started on thyroid and hgh I have been able to stay on the meds as I have moved from doctor to doctor. But to go this route you have to go through "provocative" testing (?) They give you something to stimulate your hgh or cortisol and then draw and test multiple blood samples over a period of hours. It is a pain in the ass in that I have been made to repeat these tests every time I changed insurance companies. That meant going off the hormones for weeks, relapsing and being retested. But no doctor ever refused to renew - just the insurance companies.

 

[firefly]

Does anyone know if and how much they charge for the follow up conference call to discuss the testing results and treatment plan? I will be discussing my test results with Dr. Rey in a few weeks (haven't scheduled yet - we will as soon as the immunological testing is back) and have been wondering whether I should expect a bill for this.

If I find out, I'll post about this as well.

 

[dsdmom]

30minute phone call with the clinic is $125. Of course that could change at any point, but as recently that is what it is.

 

[sensing progress]

I just got back Wednesday from seeing Dr. Klimas at her new private clinic (the one not associated with Univ of Miami). Here's a summary of my visit:

The day started off poorly with me sleeping through my alarm and being woken up by the hotel's fire alarm going off. I had to scramble to get my stuff together and missed out on a shower and brushing my teeth (I hope that this is not what Dr. Klimas and company will remember me for).

Thankfully I did make it to the app't on time. Hannah, the office manager, greeted me and I sat and waited. A physician's assistant took me into a private room and we went over my history for about an hour. She asked a lot of questions, very comprehensive. This was mostly about when my "fatiguing illness" started, what the onset was like, my symptoms, how long they had been present, how much they affected my daily activities, etc. After this the PA met with Dr. Klimas for maybe 10 or 15 minutes, then I met one-on-one with Dr. Klimas. This was a real trip after having seen so many of her lectures and videos online. It was like meeting a ME/CFS rock star! She was also much taller than I expected, probably about 5'9 or 5'10 (although wearing heels).

We talked some about the recent XMRV/MLV research (she brought it up, not me, I was trying to give her a break from it as I imagine she's constantly bombarded by patients about it). She talked a little about the recent XMRV conference in Maryland and mentioned that she spent much of it sitting next to Dr. Harvey Alter, the author of the infamous PNAS paper that found MLV's in 86% of the ME/CFS patients. She drew a diagram explaining that the two MLV's they found in the most patients were very similar to XMRV, but not identical. She also mentioned, and this was the first I had heard of this, that the antiretrovirals that were found to be effective against XMRV in vitro were not working (or not working as well, I'm not sure which) against the MLV's that Dr. Alter, et al found.

Next we discussed autonomic nervous system dysfunction and orthostatic intolerance. Before going to the app't I was asked to do a blood pressure and pulse log three times day for seven days. I found that upon waking up in the morning my resting pulse was about 65, but around 100 after being upright for just 5 or 10 minutes with minimal activity. This is called POTS, and was confirmed by the physician assistant on the day of appointment. So I was officially diagnosed with that. Now Dr. Klimas explained something very interesting to me which I had not heard before. That with POTS your body is releasing little bursts of adrenaline to get the heart rate up when standing, and that this is having an stimulating effect on the immune system. So just being upright is revving up the already in-overdrive immune response. No wonder I feel so lousy when standing up! Treating POTS/OI can make a big difference in calming the overactive immune response that is at the heart of ME/CFS symptoms.

So the treatment for POTS/OI to try is Florinef. I had a great response to taking buffered salt tablets some months ago but the effect wore off after about a month. She said this is normal as the salt initially tricks the kidneys but that they eventually compensate. Florinef on the other hand should be able to sustain the effect that I experienced. Since I'm on Florinef she ordered my serum potassium to be checked monthly, the reason for which I've forgotten. She also mentioned that if the Florinef does what it is supposed to, that is to raise my blood volume, I should put on about 2 1/2 lbs. She said that with some patients this is a turn off and they won't try it (that weight conscious?!?). She wanted also to do a tilt table test to see if I had neurally mediated hypotension (NMH), but I had already had six vials of blood drawn and wasn't feeling up for it (nor did I particularly want to pay the additional $300+ it costs). So we skipped it. It's possible that the Florinef will not be enough and will need to add a beta blocker in addition later.

Next we discussed sleep. One thing I had been wondering about was whether it's important to sleep before midnight. I had read from a couple different sources that your body only produces certain hormones in the hours asleep before that time. According to Dr. Klimas it is not important, only that you are consistent and go to sleep at same time each night. I mentioned that Benadryl helps me to sleep so she prescribed a med called doxepin which she described as a more powerful anti-histamine that was also part tricyclic antidepressant(?). She said this helps to get you into SWS (slow wave sleep). I mentioned hearing good things about Xyrem and she agreed it's a very powerful and effective drug but said that you have to be careful about using it when something less potent (and a lot less expensive! -- Xyrem costs $2000+/month) may do the job as well.

Towards the end I asked her about Low Dose Naltrexone (LDN). It didn't seem like she was going to mention it but then when I brought it up she was very enthusiastic, said it was an amazing medication and would prescribe it for me to try. I lamented the lack of clinical trial with LDN despite all the reports of it helping in various immune disorders and she said this actually has an advantage: the price stays low! As soon as the drug companies get involved it will be rebranded/reformulated and the price will shoot up.

She mentioned cognitive therapy being important and having its place in treatment. She discussed Dr. Gupta's amgydala retaining program and said it can be helpful. She used an analogy to describe that some people have laid tracks down in their brains from all the anxiety they've experienced from being sick and that rewiring those 'roads' can change your stress response and therefore affect your body's autonomic/immune reaction to stress.

Before I left she wanted me to have an IV infusion of saline (1 liter). I had never had an IV before so was a bit wary. I sat out in one of the comfy massage chairs in the waiting area and had the IV started. During this time (took about an hour) another patient was sitting across the room and Dr. Klimas came out. She sat down and all three of us started conversing. Dr. Klimas even had time to recommend some local sites to visit since I had the following day free. Interestingly the saline seems to have made a big difference for me. Usually after any sort of travel I come back home and crash for several days but this time I was able to get right back into the swing of things. I may look into getting saline IV on a semi-regular basis.

Overall Dr. Klimas was very positive and encouraging. She mentioned that's she been a HIV physician for 25 years and was there when all the AIDS patients were dying and then saw the corner turn in the mid-90's when the effective HAART drug cocktails came online. She said she feels CFS is close to turning the corner also, and that a lot may change in the next one or two years. Interestingly she said that the XMRV/MLV tests are not ready for primetime but that she is banking the blood of all her patients to be tested when the tests are reliable.

 

[lcollins64]

To Sensing Progress,
Hi, I just read your post about your appt. with Dr. Klimas. I have had CFIDS for 21+ years now. I was aware of everything you were talking about, except for the Low Dose Naltrexone. Well, I do remember seeing this before, but I've never looked it up. I just got through reading about it and it sounds amazing...to good to be true thing. I'm wondering how many CFIDS survivors have tried this LDN? When will you start yours and at what dosage and is yours a compounded one? I'm in a bad flare right now, so not sure how much sense this is making; hopefully enough for you to reply to me.
Thanks.
Lane

 

[leaves]

just a warning. i have seen Klimas in March and she prescribed LDN. I am now much worse and think that LDN was responsible. Although it may help some, there are many people on CFS who got much worse because of it. So caution please, it is not a miracle.