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Please help! CMV, EBV, HHV6 and Mycoplasma
Dr. Nicolson,
I am a 35-year old RN who has been suffering for the past 9 years. I was just recently diagnosed with mycoplasma pneumonia, and have been diagnosed with EBV and CMV in the past, and present. I also have HHV6. I used to go through phases of remission and relapses, but this last time, no remission for 9 months. I was an active, healthy woman whose life has been robbed by these bugs.
I am currently on the mycoplamsa protocol in Orlando, with the only doctor who specializes in this.
I have been on Zithromax and NAC for 3 months, along with a slew of supplements. I did Tindamax, 250mg a day for 5 days, then 500mg for 5 days, of which I lasted a total of 9 days. On the 9th day, I went into SVT, which eventually slowed, along with a plethora of other exotic symptoms. I stopped all antibiotics for 10 days and relapsed. I take Zithromax M, W, and F, and have taken 2 doses since I relapsed. My dr. wants me to start low dose prednisone and Valtrex, as my CMV titers are escalating. Not sure I want to take the predisone, even though it's low dose (40mg total daily x 5 days), because I am a nurse and don't want to catch any more infections, or experience anymore side effects. Eventually my dr.  wants me to continue with low dose Tindamax for the soft shelled eggs (eww), and he saus there's no other treatment to get rid of them other than Flagyl, which is just as nasty as Tindamax.
I want your opinion on what I'm taking and how, and if possibly we may be missing anything, in medicine or diagnoses. My symptoms are horrible. They come and go minute to minute, hour to hour, fluctuating in severity. I have muscle weakness, aches, lightheadedness, humming sounds in my head, extreme malaise (the worst symptom yet), fatigue, palpitations, racing heart, skipped beats, acne, chroic stuffy nose, etc. I'm sure you've heard it all before. There are extremely scary, because I feel like there are getting worse, and I am afraid my body won't be able to handle much more. I want to know what the long-term consequences are of these diseases, treated and not, and what path you think I should take. PLease help!!
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hi, I have same.  Please contact me.
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You are not alone I too have scarey symptoms and I just started treatment! I just hope you get well soon! this is frightening but trust the lord that is what I am doing and i am expecting him to work in me! take care if you need to talk contact me as well.
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I am so sorry. I thought at first I had written your history myself but I am 62.  the inability to combat common opportunistic vermin such as we have is genetic.  I had to stop working 4 years ago but wish I had known to stop 10 years ago when I was first diagnosed with Mycoplasma and CMV. Now my HHV 6 titre is up and I had a high titre for human parvo virus a few years ago. This condition WILL NOT go away unless pharma really starts to address the problem of poor immune response in otherwise healthy people. Coronado symbol CNDO is a company working on enzymes given off by a bovine whipworm of sorts which humans have evolved with and no longer recieve benefit from because we are too "clean" . Trials have benefited patients with autoimmune diseases. I am hoping this will be marketed soon. Also I have hope for stem cell therapy which you will see in your lifetime I am sure.  Hemispherix has been trying to get their I.V. med for CFS marketed for years and keeps getting shot down. Personally I don't think the AMA takes any of this seriously enough to get what we need pushed through the FDA. Good Luck.
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Hi,
Hope you're doing better.  I suffered for 6 years with mono which include spleen pain, head aches, sore throat, CFS, even my kidneys and heart problems and more.  On Jan 1, 2016 I decided to do something new and it worked!  It took a couple of weeks for my kidney function  moved from 50% to 85% and my mono symptoms were gone.
I completely change my diet...I starting eating and juicing raw fruits and vegetables.  THE KEY INGREDIENTS FOR THESE JUICES ARE ORGANIC LEMONS, TURMERIC and GINGER!  CHECK WITH YOUR DOCTOR FIRST TO SEE IF YOU ARE ALLERGIC TO THESE FRUIT AND ROOTS.
I got one of those bullet juicers and used a combination of ORGANIC:
    1) KALE, SPINACH, BANANA, GRAPES, KIWI AND OBVIOUSLY LEMON, TURMERIC AND GINGER.
     2) WATER MELLON, GRAPES, KIWI, LEMON, TURMERIC and GINGER.
I buy this organic foods at Whole foods and blend them and drink them three time a day...after a week my sore throat for SIX years was gone and also my SPLEEN PAIN.  ALL THE OTHER SYMPTOMS WERE GONE AS WELL.
LEMON is the Number One Alkaline food and TURMERIC and GINGER have many healing properties..,research them.  YOU HAVE TO CUT OUT THE PROCESSED GARBAGE (SO CALLED FOOD) AT THE SUPERMARKET...AND IF YOU WANT TO CONSUME ANIMAL PRODUCTS I WOULD ONLY DO WILD FISH...THE CHICKEN AND BEEF ARE NOT GOING TO AID YOUR BODY RECOVERY...IT WILL HINDER IT.
I HAVE BEEN THROUGH HELL WITH THIS VIRUS MONO (EPSTEIN BARR)...THERE WAS A TIME I FELT I COULD NOT GO ON.  I HAD TO SEARCH FOR ANSWERS MY SELF BECAUSE THE DOCTORS DID NOT HAVE ANY.  THEN AFTER RESEARCH I LEARN THE BODY TRIES TO HEAL ITSELF FROM VIRUSES, BACTERIA and OTHER ILLNESS...YOU HAVE TO FIND NATURAL FOODS (FRUITS, VEGETABLES, ROOTS) THAT WILL AID THE BODY IN THIS TASK.
LET ME KNOW WHEN YOU START AND PROGRESS.  YOU HAVE NOTHING TO LOSE AND A WHOLE LOT TO GAIN.
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Please contact me ASAP!
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Has anyone thought of having darkfield microscopy ? Live blood analysis. It won't spot the virus but will see other aggravating pathogens . It was a huge help when I had FMS
She.
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I wouldn't take prednisone and lower your immune system any more. Why is he prescribing it? I was given prednisone after a terrible rash attack years ago and soon had terrible psychiatric symptoms. I have terrible EBV like you and worked a stressful job for years with the come and go symptoms until four years ago, the fatigue was so bad I couldn't move and also had new joint and nerve pain, etc. I have to go to pain management and take 60 mg of Cymbalta for nerve pain (really nasty to get on and worse getting off but has stopped my restless leg syndrome), diclofenac nsaid, hydrocodone and extended release morphine. And I'm still always in pain! I also get epidurals for lower back and hip/leg pain and am testing for nerve bloc in neck area. I took valtrex for over a year and it didn't help me. What saved me when working and when I'm not super sick is extended release adderall. I also take all the natural antivirals and loads of supplements for immune and all sorts. Not sure if they do anything but afraid to stop thinking could be worse. I just ordered NT Factor and have hope for something to help the fatigue/malaise, which is gruesome. It's supposed to repair the inside of B cells of people like us who've had theirs damaged. The cells replicate their damaged selves so can see why I'm chock full of the damaged ones now that don't breathe right, or whatever they do. It's $55 a bottle but will stop buying most of other stuff I don't need if this works. Hopefully will remember to come back here and let you know. Dr Nicholson wrote the paper on it! He wasn't endorsing any brand though. I looked that up myself. I am letting myself have some hope! I also feel better on antibiotics that treat strep, like clindamycin. I had mycoplasma and Lyme but think hidden strep more the problem and I do better if I stay on it with probiotics. Most probably won't understand but undiagnosed stealth strep is also a problem doctors don't deal with and pharmaceutical companies won't ever let them, I'm sure. I had more than one undertreated strep sickness when younger. Thought I was starting major hot flashes a couple weeks ago and getting one to two an hour with head sweating and weird feeling all over body. Then my ears hurt extra and sinuses really stuffed so started max antibiotics and several days later realized I wasn't having hot flashes anymore--they were from infection, not menapause. I'm going to stay on the antibiotics from now on because gets bad if stop. Maybe short breaks for detox. I have loads of antibiotics left from Lyme treatment and have also ordered a certain one online without a prescription and was all individual labeled packaging. I went to sooo many specialists to rule things out because this disease is so bad. The medical system is a business first and foremost, yet they don't seem to have "managers" reviewing doctors' performances or taking action. It's awful. Some are harmless. Few are really good. Too many are terrible. God bless the nurses!
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