Recent Positive Lab Results on BFS Symptoms

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BFSDiner

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I just got more blood work back tonight .... and this was positive.It was run because of association with BFS like symptoms.Maybe this isn't Fibromyalgia after all.Matches people's theory that a virus may be behind this .... My test shows "recent infection" too ... so this isn't something that's been latent in my system for my whole life like some people have.Still reading on this ... if i find more about it I will post it. Its a member of the herpes virus family. If anyone knows anything about this virus I would appreciate any input. I am reading there is some antiviral therapy you can take, but ill be honest, it sounds very similar to HIV medications .... and we all know how those can mess you up...
 
I seem to be immune for CMV. It is really a big problem for women in pregnancy if they are CMV negative as I am, as some will know. CMV infections are so damned common , that it would astonish me if there was a link. My uncle had a lung transplant and way a constant carrier of active and contagious CMV due to immunesuppressing meds. After my first pregnancy I was encouraged by doctors to use this " source" before I get pregnant again. But although we were sharing glasses and I was around him when coughing and sneezing, I am still negative . Had a second pregnancy in worry with an elder son that in the meantime underwent a CMV infection in Kindergarten. Apparently I cannot get that virus.
 
Doing more reading there's a direct correlation between Fibromyalgia and Cytomegalovirus. At least that's what the latest research is saying. So the fact that the doctor said he thinks im developing Fibromyalgia and at the same time I am in the midst of a clear Cytomegalo acute phase (as per blood test results)..... this has me thoroughly confused. I mean I've been dealing with this on and off since February. Cyto is supposed to resolve in a few weeks. A few months at most. I suppose its possible the medications reactivated it for me. But I don't think (?) acute antibody numbers would still be showing positive 9 months later? This is so confusing. But this is exactly what i meant by "Maybe these symptoms are caused by something that is treatable so I am going to keep searching". CMV is treatable with antivirals, even though the most effective one causes cancer in humans (ugh). Taking Valtrex is a less effective but viable option, as is Lysine and other anti-herpes family techniques to help boost the immune system and inhibit the virus activity until the immune system has had a chance to resolve the infection. Or you can sit back and suffer. I mean maybe I've got BFS and I've got Cyto at the same time because I absolutely have the flu-like fatigue hitting me like a ton of bricks. I ran the CMV test myself, and my Neurologist called me today to urgently recommend I see an Infectious Disease specialist when I faxed him the results. He was all over it. What a convoluted confusing mess.
 
Burger, but we all (almost all) are stuffed with CMV, and it might activate and reactivate itself in on-off mode.At least your active CMV and your extreme fatigue seem ot be coincident, right? So at least in your case it seems to be pretty explainable. We all (mostly) have CMV since early childhood as it is extremely common and causes regular flues or tonsillitis like flues. In February you got your ART as far as I remember so it was a great kick to your immune system, CMV might switch on and still switches on-off on-off.as far as I understand heavy treatment is prescribed in case of generalised CMV, I am not sure with CMV related Fibromyalgia you would need to take carcinogenic drugs...
 
1) Yes, the Antiretrovirals destroy and rebuild your immune system, sometimes causing a syndrome called IRIS (Immune Reconstitution Inflammatory Syndrome). This can result in reactivation of latent infections that need to be re-treated. However I took it in February. Why would my CMV numbers be showing "Acute" (recent) and current infection 9 months later? Why would I have symptoms of fatigue and chills every month for 9 months, worsening as time goes on, not improving?2) Muscle spasms and twitching don't seem to be related to CMV. Nor do neuropathy symptoms. Has this reactivation lingered so long that its beginning to affect my central nervous system? Or is it completely unrelated? The only reference I can see to neurological problems with CMV are in immunocompromised HIV people. Or those currently suppressing their immune system due to an organ transplant.3) I agree the fatigue, muscle pain, burning, and malaise are indicative of CMV. But so are sore throat, swollen glands, diarrhea, and other flu-like symptoms. I've had none of these.4) Its true that 50 to 80% of people have CMV by age 40. But that means 30-50% of people don't. Its very possible I did not have this infection until 2012. The question is whether it happened in February somehow, or just before my symptoms got really bad in September. I did have a flu-like syndrome in September. One solitary swollen gland in my groin. Very mild fever. Fatigue. Night sweats. A day of sore throat then gone. Headaches. But that lasted 4 days and then was gone. A month later all hell breaks loose and twitching, neuropathy, cognitive problems, etc. So one might say I just got CMV in September. 4) There is something with IRIS called paradoxical form. I believe it means the immune system *thinks* a latent virus is still active, and mounts an immune response to it. Even though its not there. As a result you end up with flu-like syndrome without active infection. In this case I could see this ongoing, mild bouts of strange symptoms happening. It would make some sense. A lot more sense to me than CMV actually being reactivated and never resolving for 9 months. But in this case you dont treat the infection. You calm the immune system. This option is very similar to "post viral syndrome" where there is no actual infection but the body is still hyperexcitable and agitated.So this is my current mystery. Do I treat with antivirals? Or do i try prednisone.
 
but I assue you did not do CMV test every time -every month? should you dothis, you may probably find CMV activation signs...
 
Considering the amount of unhealthy stuff that aleady ran through your body, and the fact that you deal with typical BFS symptoms like most people on here, and the fact that a CMV infection is so common...I would do NEITHER. For sure not Prednisone. Hey, I have been on this as well as on Octagame for other reasons and NO, messing around with your immune system is no fun. Please always keep in mind that our body KNOWS how to heal. Even if this is a post viral syndrome (as it is for me, mine started after an unknown infection (not CMV though, still negative..) ) as my doctor thinks it is the case very often...there is no effect without side effects. Drugs and and pills are only a crutch and you cannot take them like tic tacs. Especially not those hard Antibiotics just to see if they work, and now you are considering antivirals or steroids as if you were choosig between life savers, tic tacs or smarties. Your current diagnosis is Fibromyalgia. I have seen Emilyomousey's, probably europes leading Fibromyalgia specialist for my case of BFS, he has patients from all over the place. Believe me what I have seen there, the condition WE have is still a very mild form of those diseases. He is treating those conditions for many many years now and is always involved in the newest research. NOWHERE in his treatment plan he ever mentiones the use of antiviral pills or steroids. Nowhere. Not even for the cases he identified as clear post viral CFS. Antiviral meds are emergency meds for life-threatening diseases. At some point we will have to realize that our bodies are no machines. That there's in most cases not the "easy fix" but that we have to support our bodies to get rid of diseases. And this support cannot always be poisoning it with chemicals. It is wonderful that we have medicine, it can be very helpful and if I have a bad migraine I am more than willing to take a pill. But BFS is a long-term condition. Our bodies are hyper-sensitive to ALL kinds of input. Many BFSers are very sensitive to touch, noise, smells, lights, tastes and all kinds of substances. Fibromyalgia people tend to get way more side-effects of meds that average people. Our bodies in this state are not very well in handling anything. Stuffing them with chemicals is a catastrope at that point. On the other hand, also those express detox things are things we just cannot handle right now. We have to work WITH our bodies to overcome this, not AGAINST.
 
I think you're viewing my situation from a normal person's perspective, who develops BFS.My situation is not normal. I've taken potent medications that destroy and rebuild the immune system. I have spoken to countless people over the last couple months who have been in my shoes after taking them. One developed Sarcoidosis and almost died. Another did die. Others developed Cytomegalovirus reactivation (yes, my exact situation) and continued to worsen until they were put on the antivirals. Others developed GBS and some developed CIDP. So please understand that when viewing my situation, those are my comparisons. Not everyone here. I don't know if you read what I said above about IRIS. But if my body knew how to heal me, it would have done so by now. IRIS is a real thing, and can result in worsening symptoms and even death, if nothing is done. 9 months is plenty of time to resolve an active CMV infection. In fact 9 weeks is more than enough. Yet here I am with clinically proven active CMV, and worsening symptoms. If you read about IRIS you will see there are two options, if things do not improve in a reasonable amount of time: Treatment of the underlying infection that is not resolving on its own, or Treatment for the immune system that thinks there's an underlying condition, which isn't even there.The key is to figure out which of those two is happening right now.The doctor who diagnosed me with Fibromyalgia revoked his diagnosis yesterday and told me to go see an Infectious Disease specialist for the CMV treatment. CMV causes muscle pain, fatigue, weakness, and everything I've been dealing with. CMV is also apparently tied to the development of Fibromyalgia. Fibromyalgia is well known to cause muscle spasms and twitching. So we have a possible connection going on here. CMV by itself, is not supposed to cause symptoms in healthy people. Let alone linger for 9 months. Of course I will try natural options before I consider the powerful antiviral drug. But Valtrex as an antiviral is harmless, as are other Herpesfamily inhibiting techniques like Lysine, Broccoli, Arginine reduction, and Transfer Factors. "Doing nothing" has gotten me to where I am today. Much worse off than I was 9 months ago. If I am dealing with an active infection, it should not just be ignored. If my immune system is on overdrive and fighting something that is not there, this also should not be ignored. The key is determining which of these is happening. While IRIS usually happens in immunocompromised people, I've seen it happen in regular people who take the meds short term as well."Immune reconstitution inflammatory syndrome (also known as "Immune recovery syndrome") is a condition in which the immune system begins to recover, but then responds to a previously acquired opportunistic infection with an overwhelming inflammatory response that paradoxically makes the symptoms of infection worse. If the CD4 count rapidly increases, a sudden increase in the inflammatory response produces nonspecific symptoms such as fever, and in some cases a worsening of damage to the infected tissue. There are two common IRIS scenarios. The first is the “unmasking” of an occult opportunistic infection. The second is the symptomatic relapse of a prior infection, despite microbiologic treatment success. Often in this case, microbiologic cultures are sterile. In either scenario, there is activation of the immune system following HIV therapy against a persisting antigen, whether present as intact organisms, dead organisms, or debris."(translation: the immune system either discovers a latent infection and starts fighting it, or gets confused and starts fighting an infection that isn't even there)." In unmasking IRIS, the most common treatment is to administer antibiotic or antiviral drugs against the infectious organism. In some severe cases anti-inflammatory medications, such as corticosteroids are needed to suppress inflammation until the infection has been eliminated."There is no logical reason why CMV should still be acute and active in me 9 months after being reactivated. Something is wrong. Unless i just got this infection 2 months ago. But then what expains the near identical symptoms (without twitching) for the last 8 months? I am going to get my immune cells tested (CD4 and CD8) to determine if my immune system is functioning properly. If its not, then there's reason to explain why CMV is lingering.I am going to get a CMV PCR test to prove the presence of active virus in my system. If there isn't any, then there's reason to believe this is just my immune system overacting and it needs to be calmed.And just to reiterate this: BFS isnt BFS. BFS is something else. That's a fact, and if that something else were determined, proper treatment is recommended.
 
I was just trying to tell you to be very very careful with any immune system modulating meds because I think they were part of the package that brought me to where I was 20 months ago.... And it is for sure not uncommon to develop a full blown BFS after 9 months, some people have their bfs "climax" as long as 2 years in. As I already mentioned in the other thread: if I think about worst case full-blown BFS I am talking about unbearable pain that leaves you immobile, unable to lift your arms, to walk, to sit to do anything else but lie in bed and suffer from all this. Talking about whole patches of skin that become numb or burn like hell. 24/7 bodywide twitching, massive hyperrelexia, clonus, loss of fine motos skill, shakiness , oddest tremors and vertigo that don't allow you to get up, face and lip shakyness that is so bad that you can hardly drink because your lips will miss the cup, jaw and tongue tighness and pain that don't allow you to eat properly or pronounce words properly. You just HAVE to know that this still can be BFS, so you take you time to consider the pro's and contra's to any kind of treatment. 9 months is definately not enough for many bodies to recover from an infection. If you see how many people had their BFS start with a infection and see that is takes months to even YEARS for them to get OK again. And I think you especially must consider if it is a good idea to fight a damage done by meds with other meds. If I was you I would definately get another opinion about possible treatments. I know what an active CMV due to immunesuppression means because I have seen plenty of those (it is one of the most common complication in transplanted patients) BUT I have also seen what the antiviral treatment against CMV does. 8 years long. He said that if the CMV would not have attacked his optic nerve , he would have gone off it and preferred the CMV to the treatment...I am not telling you not to do it because I am not a doctor, they will know. But I am just telling you not to jump on this conclusion and a possible treatment without taking your time to discuss it with more than one doctor. Your health especially is not built on a very stable ground, so it takes much more consideration than other people's.
 
Chrissi - thank you for your advice. I really do appreciate it. I wasn't going to go for the CMV antiviral. That one is called Valcyte. It is unbelievably potent, and toxic. Reading the inserts for it, its already proven to be carcinogenic in humans. It flat out causes cancer. If you manage to skip by that side effect, count yourself lucky, but rest assured: I don't plan to go anywhere near the stuff. Especially after the nightmare 2012 has been from those HIV medications.I landed on a discussion about CMV, and the doctor advised doing natural immune enhancement including Transfer Factors before ever resorting to Valcyte. Along with this, a fairly harmless daily dose of Valtrex is said to help. Transfer Factors are immune modulators, but they are targeted for CMV. They simply provide more antibodies to your system to help fight the virus. Likewise I am taking Lysine and Broccoli as well as juicing, resting, and exercising. Transfer Factors apparently have some flu-like symptoms associated with them so I will be very careful with them. Monitoring progress and symptoms very closely.My test results didn't come back showing old "existing" CMV infection. I am positive on IGM which is proof of recent infection (within the last 4 to 10 weeks). So it's right on target. I am hoping when I reach the end of the symptomatic period (typically 16 to 20 weeks total), things may calm down. There's a strong possibility this entire event has nothing to do with the meds I took in February. My IGM would not still be positive. Only IGG.BFSB
 
Chrissi - i tried the Transfer Factor which is supposed to stimulate immune response to CMV .... and had a very bad night. Glands got swollen, severe headache the next day. Googling more on the stuff, its an unproven technique, but at the very least, there's no doubt it set my immune system into haywire mode, and I did not feel good about that. I only took two of them and didn't take any more. I did get some ProBoost though .... supposed to stimulate Thymus .... we'll see what kind of reaction I have to that.
 
Sorry then that was a bad example. My point remains however. Just because someone took "an antiviral" doesn't mean they took the right one for this condition.
 

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