New here please help/sleep disorder

[TheMoonIsBlue]

I have not been doing well. I found out from my doctor I have elevated ebv, mycoplasma infection, elevated parvovirus, and ridiculously high hhv 6 level 1200 was my level! He said it was high but not highest he has seen. I am unable to tolerate medications and not sure how I can possibly tackle these infections. Maybe I will just die. Can't take antibiotic for mycoplasma bc of stomach. He wanted me to try valycyte for hhv 6 but that would surely kill me. I agreed to try valtrex since its milder. Who knows? Do I need to check into the hospital to get these infections taken care of? Can the HHV 6 being so high cause permanent brain damage? Should I just go a homeopathic route? Confused now more than ever. Hopeless, desperate and heartbroken. Now more than ever I'm certain my sleep has been damaged permanently by this disease in my brain. Please help.

Hi ABCFS12, I'm sorry you are having such a terrible time right now. When you say you are unable to tolerate medications, do you have multiple chemical sensitivity? Or have you just had a lot of reactions to medications? (Immediate reactions, or lots of "side effects?") I am a lot sicker now, and I also find that I can no longer tolerate even a lot of supplements.

Ok, HHV-6a- Neurotropic Virus, definitely can be contributing to your sleep problems. Valcyte can be really rough, but not for everyone. Valtrex is milder. But make sure you drink A LOT of water with it. Another possibility, is Famvir. I heard it may be somewhat effective against HHV6a and EBV, while Valtrex primarily only targets EBV.

ImmunoPro RX, nondenatured whey protein, worked well for me as far as reducing toxicity feelings. Another possibiliy, if your stomach can't tolerate a lot of meds (I had that problem with AV's after a while) is to ask if Intravenous Antivirals and/or Antibiotics can be administered. That way, they go right to the bloodstream, and your stomach isn't burdened with digesting and breaking up these hard tablets.

Wish I could help more!

 

[Hope123]

Cort has a section on his website where he talks about sleep and polled the different ME/CFS specialists around the country what they've used in patients. Depending on whether your problem is initiating sleep or maintaining sleep, you may need different medicines or more than one medicine. Somewhere on this site, he talks about sleep issues in ME/CFS and how we don't reach certain deep stages of sleep. The specialists interviewed named only 4 drugs (I only remember trazadone, Ambien, Xyrem, not the last one) that tackle this issue.

http://aboutmecfs.org/Trt/TrtSleepPrescrip.aspx

Some thoughts would be to make sure you aren't taking in any caffeine within a few hours of bedtime and also to assess your activity level -- I find that on days I try to do a little more than usual, I sometimes have a hard time falling asleep.

My view is that the sleep issues are caused by cytokine abnormalities, chemicals in your blood that kick up when you have inflammation and infection. So if you have high viral titers which might lead to high cytokine levels, that is going to affect your sleep. So, theoretically, treating the infections might help you with sleep too. Likewise, exercise can kick up cytokine levels and for us, it might not be exercise in the sense of running but just ordinary stuff you do like cooking or shopping for groceries. Cytokine levels also fluctuate during the day and their daily rhythms might be affected by ME/CFS leading to the common pattern of feeling worse in AM and maybe a bit better at night. There is some scientific articles about this stuff I am slowly making my way through so don't take my conjectures as fact!

I am someone who never had any sleep issues but I more or less developed problems staying asleep within days of getting sick with ME/CFS. I get lots of sleep from Trazadone but I still wake up feeling tired; however, I don't expect the sleep med to make me feel "refreshed" as IMO, they don't do much for cytokines. I like Trazadone because not only is it effective for me, it is an older drug that is generally safe - lower doses are used for sleep, higher doses treat depression. It's also cheap. However, everyone is different so what works for someone might not work for you.

 

[heapsreal]

I usually go to bed at 11pm and wake up at 8am, and fall sound asleep within 10 minutes or so. However, when I wake up, I feel so un-refreshed. This is called non-restorative sleep. My sleep study showed "sleep fragmentations". I really want to try Xyrem but I know its mad expensive, and can be dangerous.

xyrem is suppose to improve sleep quality, but i have read where they reckon baclofen is a cheap alternative to xyrem. Im not sure that its as good as xyrem because i have never used it but i can say that baclofen has helped improve my sleep quality but on its own it hasnt helped me to get to sleep like a sleeping tablet. Lyrica has the same qualities, ie improves sleep quality for me. If your able to get to sleep but still wake up crappy then baclofen or lyrica maybe of help to you. I suggest to google these meds and talk to your doc about it.

cheers!!!

 

[ABCFS12]

thanks everyone.
the moon is blue I wanted to ask you about how to get the av or ab's administered through IV? Also the immunopro what does it do exactly?
Thanks

 

[TheMoonIsBlue]

Hi ABCFS12,
Some doctors will administer antivirals through IV. I am not sure if this is possible with all antivirals, but I know Vistide is given through IV (kind of an alternative ((but stronger)) to Valcyte, and is only given when atleast 2 of the Herpes Viruses are present: EBV, HHV-6a and/or CMV). A long time ago a (very poorly designed) trial of was Acyclovir administered through IV to some patients.
You could ask you doctor if he administers antivirals or antibiotics through IV. I know lots of people with Lyme disease, get antibiotics through IV. So I think it is possible with a lot of medications, but you'd have to ask, and it may be that doctors save this as a last option because it is much easier to just prescribe them in pill form.

ImmunoPro RX, it is one of the only supplements that has had any noticable benefit to me through the years. It is supposed to help raise Glutathione, and generally detoxify the body. It is made by Well Wisdom, I think their site is wellwisdom dot com. There are a lot of vitamin websites that sell it and some have much better prices than others.
Here is some info about ImmunoPro RX:

•Lactoferrin - 150 milligrams* per 5 grams. An iron-binding, iron-modulating protein that enhances iron absorption when needed, also anti-viral, anti-bacterial and anti-inflammatory properties.
•Immunoglobulins - 550 milligrams* per 5 grams. Contains numerous immune system benefits.
•Bovine Serum Albumin–Along with Lactoferrin and Immunoglobulins contains generous amounts of Cysteine and Glutamine, precursors in Glutathione (GSH) production.
•Active Peptides (specialized paired amino acids), exhibit a beneficial information transfer factor effect on the immune system as well as boosting intracellular Glutathione.
•Growth Factors - (growth promoting protein fractions) are contained within the protein bound fats. Their function is to: Regenerate all aged or injured cells in the body. Build and retain muscle. Burn fat for fuel. Repair DNA and RNA. Fight infections. Help regulate blood sugar and brain chemicals

 

[ABCFS12]

When you say it helps to detoxify body what do you mean? if you are taking medication does it make it less effective?

 

[TheMoonIsBlue]

Good Question- I have no idea. I really don't think it will make medications less effective. I think, Detoxify the liver from harmful effects of medications. I actually started taking it, when I read an article by some doctor, who said that patients who were taking Valcyte had less toxicity and side effects from the medication while taking ImmunoPro (and possibly Immunocal, which is more expensive and I think not as effective). I know there were several other people I used to talk to, who also used ImmunoPro or nondenatured whey while on Valcyte. Also a product called Ave (or "Avemar") was mentioned, I only tried this for one month as it is quite expensive. I still had to stop Valcyte due to side effects, but it may have been my dose was too high.

I think I may have read about all this on the HHV-6 message boards. Sorry, it was quite a few years ago!

Dr. Cheney was recommending it for quite a while, now he may have changed his mind by now LOL because he's changed his mind on so many things over the years it is hard to keep up. But here is an interesting link:

http://www.ei-resource.org/articles...rome-articles/dr.-cheney-on-undenatured-whey/

 

[TheMoonIsBlue]

Also, here is the link to the HHV-6 foundation website

http://www.hhv-6foundation.org/

If you click on "Patients" there is a Patient forum....I have not been on there in a long time so I don't know how active it still is, but perhaps there are some old posts that would be helpful.

 

[Rachel C]

For several years, I tried many medications for my unrefreshing sleep, difficulty in fallingl sleep, the ability to stay asleep, and sleep intrusions, QEEG neurofeedback is the only thing that has provided me with some relief. All of the medications essentially drugged me, didn't really help, and some of them even made me more sick. Neurofeedback t hasn't been a cure and hasn't "fixed me", but has definitely made things better . It can be slightly expensive, but I would highly recommend it to any sleep sufferer.

Kite - I can't believe you have your own neurofeedback equipment! neurofield? eldith? Loreta Lens?

 

[dotdot]

I had 'insomnia' for years, Temazepam sometimes knocked me out, but, usually, it didn't. I'd go to bed and lie awake for hours. The problem got much worse as my M.E. increased in severity.

I finally realised that as long as I stayed up until I feel tired, when I went to bed I would fall asleep within 2 or 3 minutes. I've had a sleep study done and the diagnosis is 'Displaced Sleep Phase Disorder'. My blood pressure readings are always much higher at night, whether I'm asleep or not, and this seems to confirm that my sleep phase is skewed. As long as I follow the 'go-to-bed-when-tired' routine I can even take a mug of coffee to bed with me and I'll still fall asleep as soon as I turn out the lights. This has been a problem since I was a kid - waking for school was always really, really, difficult, lol !
The expectation is that hormone production eg Cortisol, will also be displaced, as will anything that is dependent on Circadian rhythm.

Actually, I had 2 sleep studies done. The first one was useless - they told me to go to sleep at 10pm - ridiculous! I finally got to sleep at 3.30am, then was woken up at 5.15am, and told to go home - horrible!
I complained to my Consultant and a second one was arranged, that actually tracked my sleep pattern - fall asleep at 4am-ish, awake at 11 am-ish. The displaced sleep phase was obvious from the 2nd study.

Another thing...

I've been using LDN, intermittently, for a few months and, when I use it, it has a very dramatic effect on my sleep pattern.
Rather than my 'normal', solid, 7 or 8 hours from 4am or 5am, it turns into a few days of unpredictable narcolepsy-like falling asleep, then stabilises into 'blocks' of approx 6 hours asleep, 6 awake, 6 asleep, 6 awake... This resolves back to my 'normal', 'err abnormal, sleep pattern within a few days of stopping the LDN.

Not sure that this has helped in any way, but maybe try going to bed when tired, not just as 'routine'?

for a brief overview, check wikipedia : http://en.wikipedia.org/wiki/Circadian_rhythm_sleep_disorder