Klimas cfs clinic

[aquariusgirl]

Leaves
Y the saline IV? to help you get thru the 4 hours?
Did it help?
I assume insurance will pay a portion of the doctor fee, right? They just wont' pay over and above their customary rate.

 

[gracenote]

I'm curious what Dr. Klimas will have to say about the sleep study. I'm wondering if the advice about setting the alarm clock is what is given to healthy clients who have sleep disorders and might not apply to someone with ME/CFS.

Thank you so much, leaves, for sharing with us. It is very much appreciated. Well done!

 

[serenity]

good point about the advice being maybe what they give normals Grace, thanks for that.
my sleep doc / nuero would not touch my fibro symptoms at all - said he was not the guy for that.
so yes maybe that advice isn't for us? not sure...
Leaves i am happy for you about your appt with Dr. Klimas that is exciting, i am jealous! haha!

 

[GoWest]

Leaves get the XMRV treated

Hi Leaves,
You don't know me, but I would love to see you and all get well. With a postiive for XMRV perhaps you want to pursue treatment of that retrovirus. At this point I don't think it will be too difficult to find a doctor in your area willing to treat you for a retrovirus. You could try someone who treats HIV or any of the top doctors for cfs such as Bell or Cheney or others. Even some of the Lyme specialists are getting on board. If you are up for reading some of the posts on this list about the validity of Mikovits' work and the invalidity of the European studies SEEMING to contradict her, I think you will be tempted to figure Klimas is missing the point here. You are spending a lot of time and money validating that you have all the symptoms of cfs. That will not treat you. You will just be poorer and at least as sick. The cfs world has been looking for a viral cause since the days of Elaine DeFreitas in the early 90s. I only wish I were in your shoes with a positive for XMRV. I would be getting treated for it yesterday.

Paula Carnes

 

[gracenote]

Hi Leaves,
You don't know me, but I would love to see you and all get well. With a postiive for XMRV perhaps you want to pursue treatment of that retrovirus. At this point I don't think it will be too difficult to find a doctor in your area willing to treat you for a retrovirus. You could try someone who treats HIV or any of the top doctors for cfs such as Bell or Cheney or others. Even some of the Lyme specialists are getting on board. If you are up for reading some of the posts on this list about the validity of Mikovits' work and the invalidity of the European studies SEEMING to contradict her, I think you will be tempted to figure Klimas is missing the point here. You are spending a lot of time and money validating that you have all the symptoms of cfs. That will not treat you. You will just be poorer and at least as sick. The cfs world has been looking for a viral cause since the days of Elaine DeFreitas in the early 90s. I only wish I were in your shoes with a positive for XMRV. I would be getting treated for it yesterday.

Paula Carnes

I have to disagree with you Paula. I have tested positive for XMRV. I am seeing a doctor who is working with WPI and Dr. Mikovits on an XMRV study. He thinks it is still too early in the research process to even know what a positive XMRV diagnoses means, and especially how to begin treatment for it. And if I remember right, treating the retrovirus doesn't necessarily mean you don't need to treat the other infections. With HIV, you also have to treat the pneumonia or the other opportunistic infections in order for the patient to have a chance at recovery. (Or with a retrovirus, would the more correct term be remission?)

As far as I know, neither Bell nor Cheney (or Peterson for that matter) are treating for XMRV at this time. Correct me if I'm mistaken.

 

[shiso]

Many thanks Leaves for sharing your experience at the Klimas clinic!

There are so few doctors worldwide who are knowledgeable about this disease, who even know what abnormalities to test for, and it must have been exciting to see one of them.

Good luck with your treatment and health, and thanks again for the well-written, clear report!

S.

 

[serenity]

i have set an appt with an actual fibro guy here in my town, i am so excited. mostly i am turned away by docs when they hear my diagnosis, but this guy works with fibro! yea! wish me luck

 

[Hope123]

There is some evidence out there that dysregulated cytokines lead to sleep problems so I think behavorial measures can only do so much. People with FM have different cytokine measures at night compared to normals and certain immune treatments for breast cancer lead to sleep problems directly. Sleeping meds are important but are a bandaid until we figure out how to get the cytokines under control.

 

[andreamarie]

I had two very good sleep specialists until one lost his position seeing patients. I have always been a night person, long before CFS. My late mother and niece are night people. Turning me into a morning person was useless. The sleep doc I see now is a night person and never tried. My best sleep time is 12 to 9, but I'm not disciplined and it's turned from 1ish to 10ish. Sleep is one of my biggest problems; I take enough meds to put a city to sleep. I never napped, even before CFS. I find sleep so important, I will not set an alarm. I did all of that in the beginning. Last wk I fell asleep at the hair salon for an 11 apt. I couldn't sleep during a sleep study because they shut the lights at 11 and I had to sleep on my back. I also started itching from the adhesive (I've always had problems with adhesive.) I'm going to see sleep specialist and see if we could set up another study.

 

[serenity]

i had a horrible time with my sleep study, could not sleep with all those uncomfortable wires. had to take Ambien.
i think i had like 3? it was so hard. then i tried all the CPAP & mouthpieces & all that crap. my official diagnosis was Upper Airway Resistance Syndrome. but i think it's just the normal bad sleep we CFS / Fibro patients get. i think my docs just didn't understand, not being specialists in my actual problem. i have an appt with my sleep doc tomorrow to try a new med, my nightmares are back & i am sleeping poorly again. been on Lunesta for a couple of years & it just isn't doing the trick anymore. i do so much better when i sleep.

 

[leaves]

yes Fybro it is the same for me, sorry Leaves that i jumped on the negative there - didn't mean to, just a reaction to the idea of waking up when i dont want to. ack! haha!
but i really do hope it works for you.

Haha, Sure I understand that

quote Gracenote: I'm wondering if the advice about setting the alarm clock is what is given to healthy clients who have sleep disorders and might not apply to someone with ME/CFS.

Yeah that makes sense, I'll let you know what she says!

 

[leaves]

Leaves
Y the saline IV? to help you get thru the 4 hours?
Did it help?
I assume insurance will pay a portion of the doctor fee, right? They just wont' pay over and above their customary rate.

No it wasn't; it was to see whether my tilt test diagnosed IO would improve with increasing blood volume. I did not feel a lot better; it did help for 2 hours or so I think, but no lasting effects. . It was onlyhalf a bag too. I would not do it again given the high costs, but I guess it was an experiment.
I dont know about the insurance system, I only recently moved to the US and it is allvery mysterious to me.

 

[leaves]

Hi Leaves,


Paula Carnes

Hi Paula,
Thank you for your concern. At this point it is not clear how xmrv causes disease, and whether reducing viral load will reduce symptoms. Moreover there are no antretrovirals that are both safe and proven xmrv effective on the market. At this point taking antiretrovirals is not a sensible option.
Some months ago I contacted Dr Mikovits that I would be interested in participating in clinical trials to test antiretrovirals. I did this because I want to help advance the treatment and research for CFS. But I do want to have careful dr supervision, as taking antiretrovirals can be dangerous for my fragile state (I am doing reasonably well lately) and I dont want to create a reistant xmrv virus either. As of now there are no trials available, but if there are then dr Mikovits will contact me.

 

[GoWest]

Cheney is treating it with artesunate and wormwood and stem cells. Are other cfs and Lyme docs treating it? Yes, but I don't know specifics and have no right to post information. Hopefully, some doctors will begin to present information IF they see improvement in patients.

AZT, as Mikowits has said, will probably be the big player on the board, but most docs will not consider using it at this time for the reason you mention - unsure if XMRV is the cause, and because AZT even at low dose, has some risk. I agree with you that treating what may be co-infections is important - Lyme, mycoplasma, c. pneumonia, EBV, HHV6 ad nauseum. My experience and that of thousands of other cfs patients is that treating these will not cure us. It may make us somewhat better for awhile. That is certainly true in my case. And the treatment for co-infections is longterm antibiotics and has its own risks without any guarantees of cure.

I tested negative at VIP for XMRV - negative culture. I hope to get retested when they get a serology test. If I were positive I would be knocking on every doctor's door in town to get AZT. That is my opinion, but everyone will have to decide for themselves or wait awhile for more evidence.

Paula Carnes

 

[goldiland]

Leaves,

Ask Klimas about Xyrem... if your sleep study is showing you are not getting stage 3 or 4 sleep, this is one of the only phamaceuticals that will allow you to get alpha wave sleep. She put me on Xyrem about 18 months ago and it made a huge difference.

Paula, I know all of us want a cure and are willing to try things but I'd personally be very wary of using an unproven drug or combination of drugs for XMRV. I've had multiple discussions with Klimas on this and she is very concerned about creating drug resistance with anti-virals that may or may not be effective. She experienced something similar with HIV/AIDS; patients were on early anti-virals and many patients were ultimately drug resistant to the effective cocktails that were developed in the 90's.

 

[leaves]

Thanks for the advice! I will ask her about that. I think she mentioned it but said it would not work if you had sleep apnea as it would then get worse. So maybe not for me but we will see!

 

[Rrrr]

leaves,

thanks for this thread. i finally just read it! i'm excited to read it and follow yr progress. i love nancy klimas. please keep us updated as much as possible on:

1) what your labs show
2) what dr klimas recommends regarding those lab results
3) how you fair with her recommendations/ treatments.
4) if your insurance covered ANY of the office visit cost ($800+)

we are all routing for you!
Rrrr

 

[Rrrr]

leaves,

i know klimas' clinic is new, but did she make any noises about maybe taking medicare soon? i called a month or two ago and they said they do not take it now. but i did not ask about the future.

Rrrr

 

[leaves]

Test results in !!

Hi RRRR and others

Ok so I just got my test results and a teleconference with Dr Klimas.

Sleep study: I have very short rem sleep and low quality sleep. She wants me to take a sleep medication, I forgot the name. Liquid something. I think it was the Xyrem that Goldiland mentioned above. This is to improve deep sleep. She also suggested me to take nasalcrom for me to breathe better, as well as some kind of sleep apnea shirt to make sure I sleep on my side (or just put a tennisball on the back of my shirt) and to wear a thing on my nose to keep it open (?).


My vitamin D was low, which is pretty weird as I take 2000 IU every day. She wants me to take 4000 IU and for the first 2 weeks 10000 IU,

Infections:
Lyme and coinfections were negative thank god. I did have positive titers for cytomegelavirus (?) and an active EBV infection. She also tested for HHV but we forgot to discuss that (she expected me to be positive because of my cognitive problems).

My immune function:
I have chronic immune activation and inflammation. She also looked at 16 Cytokines.
I had 4 high ones:
il1 or il1a; this is made by tissue and suggests a neuro inflammatory disorder (for example an infection in the brain)
I also had a very high IO4, this suggests allergy (true I am allergic to everything)
IO 12 was high too, this suggests a virus infection.
Interestingly I also had high IO 17; which is intestinal; and suggests an intestinal infection. I have had parasites but I treated them, and the last few stool test were clear, but apparently something is still wrong. I guess there are so many organisms/ bacteria we do not know of yet and can not test for. Not sure what to do about it.

Good thing is that my NK function was real good!!! She was actually very surprised about this given my other test results. I guess I am doing something good with my nutrition ☺. Amount of cells was a bit low, but not too bad. Still she is going to prescribe me immunovir because I need some help fighting my viral infection.

Endocrinological:
My hormones (estrogen and progesterone) were very low. She was a bit worried about that and wanted to put me on birth control, but I did not want that. I have been without periods for like 8 years or so, and I never felt better on birth control. Also if xmrv grows on estrogen, I rather keep it low.

my XMRV infection:
I asked her again about XMRV, whether she thought my XMRV infection was causing all this. She is not sure yet. She mentioned that there may be some clinical trials this fall. That would be awesome :victory:

Anyway I am happy with all this, and pretty optimistic. I only am a bit in the dark about the intestinal mystery and also my allergies. Don’t see a treatment plan for this. Also I have to ask about the HHV6 (but probably nothing can be done for this anyway)

xoxo
leaves

 

[serenity]

the sleep study stuff sounds very similar to what i heard - apparently this is fairly normal for us.
glad you got your results back & are fairly pleased with them.