EBV related problems

[Rory_5]

Hi all,

I've had a brutal couple of months. Long/short of it, I've consulted with Dr. Dantini and he thinks I have CFS. Here are the details:

- in mid-May I developed neurological problems: tingling in my fingers, then loss of strength, then muscle twitching (mainly on left side), then slight paralysis (left leg dragging a bit, lower lip was drooping). After seeing several doctors and having tests to rule out things like MS, ALS (MRI, CT scan, EMG, etc.) I saw a neurologist who says his best guess is I had a mild case of Guillain Barre syndrome.

- by mid June the GB symptoms had largely cleared up and I was feeling much better. Then around June 17-18 I came down with flu-like symptoms: sore throat, cold sweats, upper abdominal pain (liver/spleen?), pain just behind my jaw/inner ear (tinnitus?), and profound mental and physical fatigue. These symptoms were severe for about two or three weeks; during this time my sleep became disrupted, and I would wake up earlier each day, and having progressively lighter sleep. The flu-like symptoms mostly cleared up but I was left with a severe sleep disorder and associated fatigue.

- By late July I was barely sleeping at all. I had a sleep study which confirmed a complete lack of deep/slow wave sleep (only stage one sleep the entire night, plus restless legs, which is a new problem for me). Sleep medications were not helpful.

- in mid-August I consulted with Dr. Dantini. Based on my symptoms, he suggested his usual protocol of viral testing. We consulted again with the test results: I have a recently active EBV infection, with signs of a less-severe CMV infection (I don't have his write-up yet so I don't have the exact numbers). He advised he would be recommending acyclovir because my infection is not that severe.

- I saw a throat specialist next due to my persistent sore throat. I advised him of Dr. Dantini's recommendations, and he RX'd acyclovir at 400 mg X 4 times daily, for ten weeks.

- Dr. Dantini also recommended high dosage of melatonin to help with the sleep disorder. I found this has helped greatly and I am getting around 8-9 hours per night, although it is still not the greatest quality sleep and I wake up feeling not completely refreshed. The mental and physical fatigue persist throughout the day.

- Dr. Dantini also found I had low vitamin D (40?) which is odd because I take a lot of it (4000 iu per day, now up to 10,000)

- I can no longer tolerate any alcohol whatsoever. I instantly feel sick/dizzy after two drinks. This was never a problem before.

- Lastly, but perhaps of greatest concern: when the insomnia became severe in late July, the neurological problems (muscle twitching, mainly on my left side) seemed to come back. This is a minor annoyance but still of great concern because of what this can potentially signal.


my questions....


- Does anyone have experience with acyclovir for EBV infection? Results? I have been on it for five days so far.

- Has anyone experienced liver problems associated with viral CFS?

- Has anyone associated neurological problems (Guillain Barre, Parkinson-like symptoms) associated with viral CFS?


Thanks for reading.

 

[Misfit Toy]

Welcome to many of our worlds. I started with ebv and couldn't sleep at all. I am in that boat again. It does help people. I have seen a lot of people on here get better from it. Problem is, for me, I have consistently high EBV titers. Like astronomically high. I stay on Valtrex for a spell and then get off. I don't really feel it's made a huge difference for me, but I don't like being on it too long. Some people, like myself have faulty livers and have had problems.

Have your liver checked if you go on it, after a spell. Some people use Cat's Claw, Olive Leaf Extract, etc for EBV. I have never found they made a difference.

Sleep problems are for me the worse. To not sleep, how does the body repair and I have taken everything this year and nothing has worked. NOTHING.

This locomotive, this illness is in control. You have to ride the wave and keep trying new things. Keep coming on here and hopefully someone else will give you more insight. Chime in, CFIDS folks.

 

[Ema]

- Does anyone have experience with acyclovir for EBV infection? Results? I have been on it for five days so far.

Acyclovir is Zovirax and Valacyclovir is Valtrex. They work similarly though but neither of them may have much affinity for EBV or CMV. They seem to work best on the Herpes simplex viruses. That said, I know people that take them and report improvement in their viral titers. However, antivirals seem to take a long time to work. My doctor considers a therapeutic trial at least 6 months and possibly up to a year. Famvir may be a better choice as it is thought to be active against EBV/CMV.

If melatonin is helping with sleep, you may wish to have a saliva cortisol test to see if your cortisol levels are too high at night. This can be very common. The melatonin opposes cortisol and can lower it to help you sleep. But experts are divided on the safety and efficacy of high doses long term. If you take a saliva cortisol test, you would need to discontinue the melatonin for at least two weeks prior to the test to get a clean baseline. You could also measure a salivary melatonin at the same time for comparison.

If you're having liver problems, alpha lipoic acid can be a good supplement as can milk thistle.

If you're taking a lot of Vit D and not seeing it in your 25-OH levels, I would consider getting a 1,25 D test. Many people with inflammatory disease have a dysfunctional Vit D receptor. If your 1,25 D levels are high, it can be immunosuppressive. Unfortunately, most doctors don't think to test this and may unintentionally be overdosing patients on Vit D.

http://perfecthealthdiet.com/2010/08/vitamin-d-dysregulation-in-chronic-infectious-diseases/

 

[taniaaust1]

Welcome

You neuro issues could be symptoms of a deficiency of one of the B vitamins. (take care as if you have a B deficiency and it isnt corrected, having it long term may lead to permanent neurological damage). It has been said that those who have ME/CFS often have intracellular deficiency (or a deficiency in the brain) so it may not show up on B testing.

My symptoms over the course of the illness thou in a different order then yours as mine started off virally, have gone throu similar stages including neurological ones. Ive had left side leg/foot drag (strangely its often the left side affected in ME//CFS, I hardly ever hear anyone say the right side... so maybe its related to the part of the brain being affected).

At my worse with the ME neurological symptoms, I had many symptoms that MS patients have (eg couldnt feel hot water, one sided leg/foot drag etc) and also was appearing like a Parkisons disease patient (so much so that one time when I was in hospital after being admitted due to my severe neuro symptoms.. I actually was mistaken for being a Parkisons disease patient by the nurses there). I couldnt walk and had constant tremors happening.... along with sudden spasms and myoclonus.. and also seizure/seizure like incidents.

I'd over done it and crashed and had this whole shift into neurological symptoms .. at other points of my illness.. its instead been very virally symptoms (fever, glands up, muscle aches etc etc). Your case is a bit unusual with the start up of severe neuro symptoms first. TAKE CARE NOT TO OVER DO THINGS.. if you need to rest do it.... as possibly your case could end up quite severe if you arent careful (I say that due to the large range of symptoms you've already experienced in a short time and its still very early days for you.. from my observation usually the worst a case, the more symptoms one often has.. the more systems affected). I hope your finger twitches and leg drag you had, are just a B deficiency which can be easily corrected. You may need active forms of Bs)

My brain waves with this illness were affected for a long time too.. going far faster then they are supposed too, my brain couldnt get into the right state when I was at rest. My brain was affected that way for years (abnormal EEGS) but last year.. for the first time my EEGS are not now showing up abnormalities (and interesting.. my neuro symptoms are hardly happening anymore either.. instead.. I now have severe autonomic issues!!! So yet.. another symptom complex of it. This illness can really drastically change, which has made it very hard to get my symptoms all sorted out. (over 90 different symptoms Ive had so far with this).

My vitamin D which was severely deficient.. went down even further on standard D3 supplementation.. I ended up having to have some very large doses of it and after that was put on 4000IU per day. Interestingly.. my D issue has gone away in the past year and my levels now stay in the normal range without supplementation. (that improved around the time my EEGs became normal and my ESR which is a sign of infection.. also lowered which was borderline high).

Watch your foods (as you probably will develop food intollerances with this illness at some point.. and also be very careful with your chemical exposure.. as you also are likely to get multiple chemical sensitivity at some point. (all another symptom complex of this illness). Watch out for autonomic issues.. eg BP issues and Postural orthostatic Tachycardia as autonomic issues are the norm in this illness and will probably occur at some point (and are treatable some).
Ive gone throu about 4-5 different stages with this illness.

At the start of my ME.. at one point they thought I may of had hepatitis (which after more testing said things were ok) and did further tests.. cause my blood test showed liver was having issues.

I carry CMV and had severe mono (EBV) when I was younger.. (10 weeks off of school as I was in bed)... I suspect i have some reactivation going on at times.

The alcohol intollernace of this illness (ME).. almost made it into one of the CFS diagnostic criterias and was strongly discussed when they were forming the criteria. Its quite common.

Unfortunately the waking up not feeling refreshed, there probably isnt a lot you can do about that symptom. If you are getting 8-9hrs of sleep even if it is poorish with this illness.. you are actually lucky in that area. (sleep issues are huge in ME).

Good illness management is essential, Im glad to hear that you seem to have a good doctor.
best luck

 

[Rory_5]

Thanks everyone.

Tania: finding a good doctor has been a huge problem for me. In Canada, it seems the patient has to take whatever the system is willing to give him/her. I consulted with a Dr. Dantini in the US who specialized in fibro/CFS, he's the one who recommended the viral protocol. Prior to that I had a hell of a time finding a doctor who would treat this as anything other than a psychological problem.

I just hope the acyclovir is enough... it was damned expensive ($500 for 10 weeks) and I know it is one of the cheapest of the antivirals. I'm seeing an infectious disease specialist soon, hopefully he can provide further guidance.

 

[taniaaust1]

Thanks everyone.

Tania: finding a good doctor has been a huge problem for me. In Canada, it seems the patient has to take whatever the system is willing to give him/her. I consulted with a Dr. Dantini in the US who specialized in fibro/CFS, he's the one who recommended the viral protocol. Prior to that I had a hell of a time finding a doctor who would treat this as anything other than a psychological problem.

I just hope the acyclovir is enough... it was damned expensive ($500 for 10 weeks) and I know it is one of the cheapest of the antivirals. I'm seeing an infectious disease specialist soon, hopefully he can provide further guidance.

Its the same situation the world over, specialists very hard to find. You did the right thing by traveling while you can to see a specialist so you can start trialing things. It took me over 10 years to find a specialist in my state and none of those doctors (ive seen about 35 different ones) took ME/CFS very seriously and wouldnt even treat my symptoms (I kept being told CFS is something we cant treat).. the result of that was I ended up completely bedbound with no help at all and ended up going throu hell and back.

I wish I'd found a specialist right at the start.. you've put yourself in a good place to get whatever help you can.

 

[Rory_5]

... I didn't even see this doctor, we just had phone consultations and he recommended some lab work based on that. The lab results were sent to him, then he sent me his recommendations. He couldn't RX me anything without seeing me in person, so thankfully I had an appointment booked with a throat specialist who was willing to RX me the acyclovir based on the active EBV test.

Going forward, I don't think I'll tell my GP or any specialists I see here (here is Ontario, Canada) that I think I have CFS/ME. I will focus on the EBV infection when dealing with me GP or ID specialist, and focus on the lack of deep sleep when dealing with sleep doctors/neuropsych.

 

[Marg]

Thanks everyone.

Tania: finding a good doctor has been a huge problem for me. In Canada, it seems the patient has to take whatever the system is willing to give him/her. I consulted with a Dr. Dantini in the US who specialized in fibro/CFS, he's the one who recommended the viral protocol. Prior to that I had a hell of a time finding a doctor who would treat this as anything other than a psychological problem.

I just hope the acyclovir is enough... it was damned expensive ($500 for 10 weeks) and I know it is one of the cheapest of the antivirals. I'm seeing an infectious disease specialist soon, hopefully he can provide further guidance.

I started Acyclovir, I think in mid June since I did not see Dr. Klimas until May 24. I had some GI issues the first couple weeks. I now do not have a problem with it and yes, feeling so much better. I had been on Imunovir for almost two years but there still was some EVB activation so Dr. K said to add Acyclovir, it was the least toxic and cheapest. She wrote for a year. I am not sure when I will be tested again. I take 800mg 2x.

Good luck!

 

[Rory_5]

I started Acyclovir, I think in mid June since I did not see Dr. Klimas until May 24. I had some GI issues the first couple weeks. I now do not have a problem with it and yes, feeling so much better. I had been on Imunovir for almost two years but there still was some EVB activation so Dr. K said to add Acyclovir, it was the least toxic and cheapest. She wrote for a year. I am not sure when I will be tested again. I take 800mg 2x.

Good luck!

A year? <gasp> I think I'm only going to be on for ten weeks, but we'll see how it goes.

What was the basis for your being prescribed Imunovir?

 

[Marg]

My natural killer cells were ony 5% at first testing, the next year 25% and nine months later high normal. I am not sure when I will be tested again.

I am not sure you could tell much at ten weeks, it takes a while. Have you had your natural killer cells checked?

 

[heapsreal]

My natural killer cells were ony 5% at first testing, the next year 25% and nine months later high normal. I am not sure when I will be tested again.

I am not sure you could tell much at ten weeks, it takes a while. Have you had your natural killer cells checked?

So Marg the immunovir is definately helping your nk function then. So was it a year and 9 months when your nk function tested high normal??
Can your share yoyr new nk results when you get them.

cheers!!!

 

[Marg]

Yes, May 24. I overnighted blood a month before I went so results would be sure and be ready. I was totally surprised, Dr. Klimas came in with my folder and said, "This is what doctors like to see." She then said the killer cells were high normal. I am not sure when I will be tested again. I am not sure how it will all work now. Those great immune tests were done at the University of Miami. Drs. Klimas and Flectcher were the directors of the lab at U of M and Dr. K will have a lab at Nova University. The Miami clinic will remain open, they answer the phone Nova though. I have not heard anything of the new center. I spoke with Dr. Rey the last time I called.Miami, she said she would pass my message to Dr.K. I did not ask any questions about the new center,should have. It was not an appointment so I kept it short. My scrips are all for a year except one that ran out so I called. It was called in by Dr. K. It seems like we should be hearing something before long but what an undertaking. You can be sure I will post my next results. The cytokines were better but something still going on with them inflammation was better but still some of that. I am hoping the unidentified parasite and bacteria in the small intestine is the trouble. I will report on that but it will be 5 more days this round wait 5 days and then 20 more. I will then test.

Rich told me about the test that first showed unidentified bacteria and then the stool test showed the rest. Dr. K called the Ion test with 40 amino acids..state of the art, she was thrilled with it. I had not had the stool test at that time. Expensive, yes but worth every penny. I would say the best test I have ever had and I have had a lot.

 

[Marg]

Yes, May 24. I overnighted blood a month before I went so results would be sure and be ready. I was totally surprised, Dr. Klimas came in with my folder and said, "This is what doctors like to see." She then said the killer cells were high normal. I am not sure when I will be tested again. I am not sure how it will all work now. Those great immune tests were done at the University of Miami. Drs. Klimas and Flectcher were the directors of the lab at U of M and Dr. K will have a lab at Nova University. The Miami clinic will remain open, they answer the phone Nova though. I have not heard anything of the new center. I spoke with Dr. Rey the last time I called.Miami, she said she would pass my message to Dr.K. I did not ask any questions about the new center,should have. It was not an appointment so I kept it short. My scrips are all for a year except one that ran out so I called. It was called in by Dr. K. It seems like we should be hearing something before long but what an undertaking. You can be sure I will post my next results. The cytokines were better but something still going on with them inflammation was better but still some of that. I am hoping the unidentified parasite and bacteria in the small intestine is the trouble. I will report on that but it will be 5 more days this round wait 5 days and then 20 more. I will then test.

Rich told me about the test that first showed unidentified bacteria and then the stool test showed the rest. Dr. K called the Ion test with 40 amino acids..state of the art, she was thrilled with it. I had not had the stool test at that time. Expensive, yes but worth every penny. I would say the best test I have ever had and I have had a lot.

-----
I forgot about this post. I was looking for others on Acyclovir. I am still on it an will have my levels checked this week.. In May I still had some reactivation of EVB. The Acyclovir was at 7.85 10 being the high. I added another 500 but that is too much, causes more pain so uric acid must be too high now. I am still on Imunivor. natural killer cells are now above normal. I guess the higher the better. I could stop Equilibrant but I have two boxes so told to take 1/2 a day and it will help immune system. I was given a lab sheet to have any regular test you can think of here and send results. It was the best test...all normal...you name it. Imunivor is an immune modulator, it worked magic with me. Sleep is still not good...want to stay up feel good. It has been 12-1:00AM.. I hope this time change will help me. I have tried s lot of things for sleep either they knock me out for two days with 1/2 pill or I stay awake. I am using Ambien and it will finally put me to sleep for a while. I HATE the CPAP and do not think I need it...came out borderline. The new one with nasal pillows that adjust is not as bad but it hurts my nose and I just don't like it on my face. It winds up on the floor quite often. LOL The sleep doctor said we are not like regular sleep apnea people we are shallow breathers, most anyway,.

What do you know for sleep Heap? What works for you?

Each year is better but I think I will always have to watch it. I take 5,000mg liposomal C read, C could actually kill EBV but probably even higher does or IV. It is expensive and I am going to try my hand at making it. I saw a couple guys doing it on You Tube.

I did make my own fermented veggies. I just finished the 3rd batch. I made 6 quarts in each batch with finely grated cabbage, kale, carrot and parsley It really does help digestion and elimination. You can read all about it on Mercola.

Oh, m y detox must be working, burn, burn, burn with the uric acid. The bathroom smells like I have been eating a lot of asparagus.

Upward!

Marg

 

[Iquitos]

I take acyclovir 800 mg, 4 x/day. It brought me back from not being able to walk without holding on to something or someone -- the feeling of being tipsey or trying to walk on the deck of a moving boat. It took about 3 months to get signifcantly better. I get it from a pharmacy in India so it's not so expensive.

I take LDN (low dose naltrexone) for sleep and immune issues. And melatonin for sleep.

For sleep, I also listen to brainwave audio recordings that purport to get my brainwaves to change to those associated with sleep. You can find them on youtube, called "sleep induction." None of it helps me sleep all night but it helps me get to sleep and get 3-4 hours of good sleep.