Dr Klimas Test results in !!

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. (IT IS DOXEPIN, 10 mg, anyone experience with that? ). 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

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)

Comments

I am happy that you are happy with your test results. You have a very good doctor in Dr Klimas. Hope you continue in better health. Thanks for explaining some of the testing she does. Maybe one day we will have someone as good as Dr. Klimas in UK.
 
Hi Leaves,

I would think that if you can improve your sleep quality, that will a big help with how you feel. It must be wonderful to have a doctor that finds out what's not working, and then tries to improve real problems.

Good luck with it all

jace x
 
Congrats on getting more info!

I was prescribed doxepin, too, and it didn't work for very long and had those side affects I didn't like (ravenous hunger, weight gain, carbo craving), so eventually I got my doc to prescribe something else for sleep. They usually don't want to do it, but a narcotic, codiene, worked better for me. (My doc agreed I don't have an addictive personality and if I needed a small amount for sleep for the rest of my life, so what?) It depressed CNS and damped down the pain that kept me waking all night. The immune mod affect of opiates is what helps, I think, just as much as doxepin.

You might want to ask Dr Klimas about LDN, low-dose naltrexone, and check out the LDN thread here. It has brought me restful, unmedicated sleep for the first time in decades; regulated some hormones to where I now have libido, normal sexual response and erotic dreams; cleared a lot of brain fog and increased my energy and sense of well being. Part of how it works is to stimulate your body to produce natural opiates. Many of us on LDN have also revived our immune systems, to some extent. I've only been on it for 9 weeks. And it's very, very cheap.

Thanks for sharing with us!
 
Ha oerganix !
Thanks for this info :)
actually i am now 3 weeks on ldn
i like it, so far no big changes but sleep has improved. Well I guess I just try it for a while this doxepin; can always stop if I don't like it
 
Thanks for sharing leaves.

I'm thinking the "thing on your nose" she's talking about is a Breathe Right strip. They do make quite a difference. I first tried one when I had a bad cold, and now my hubby uses one every night cuz of snoring.

If you have a Costco or Sam's Club card, they are *much* cheaper than the drugstore or Target. Also, our experience is that the generic or store brands are not as good.

Shelley
 
Ha Shelley thanks !!
I was already dreading to go to CVS and ask for a "thing on my nose" lol :)
 
Yes, I am very surprised about the good nk function too. I definitely dont have the idea that my immune function is working well. Although I never get fever or flu... but I have all these lingering infections that I cant get rid of. Perhaps it is functioning well against a particular type of infections, but not others? I dont know how this NK function is tested. Weird stuff.
 

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