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Quick rundown on EBV/fatigue, please?
Can somebody please give me a quick rundown on EBV and how long it's reasonable to expect the fatigue to last? My teenage daughter currently has elevated EBV numbers, and I suspect that the "flu" she had last January was mono. But it's now September, and she's still trying to sleep 14 hours a day, and is always exhausted. Is this normal?
The other possibility is that she didn't really get mono until this summer, when I know a close friend of hers got it. But if so, she never showed any obvious signs of it (other than this durn fatigue!)
The other possibility is that she didn't really get mono until this summer, when I know a close friend of hers got it. But if so, she never showed any obvious signs of it (other than this durn fatigue!)
You said your friends son's physicain prescribed an anti viral for his mono. What exactly is that? I've always been told by physicians you just have to wait out a virus. In my case though it hasn't gone away.
Hi carisa,
What are your symptoms ? If your symptoms are listed above (the CDC's criteria for CFS), you should consider getting CFS ruled out.
My friend's son was put on Valcyte when he first was diagnosed with mono. I'm assuming his physician prescribed it to prevent him from getting CFS/ Some physicians are prescribing Valcyte to CFS patients. There is another drug that I believe is still a research anti-viral.... it is called ampligen and it is also being used on some CFS patients. For patients who are very ill with CFS.... there is hope now. Dr. Jose Montoya at Stanford University has had successful results with another anti-viral... valganciclovir in CFS patients. The co-founder of PetsMart was on the original study and from what I understood... he went from being disabled to jogging again. There are, however, risks with that drug and I'm sure side-effects with the other anti-virals.
To confuse you even more... there are antibiotic protocols for CFS patients that are having success. I was put on one of these and recently switched to a homeopathic sort of treatment that does the same thing. You know when the medications are working because you feel worse. It is the same thing that lyme patients go through when they are being treated with antibiotics, because the bacteria that is making them ill is dying.
There are also other ways in dealing with CFS or EBV.... some of them use just supplements and few meds. The information is on my website (listed in my profile) and I am planning on today moving the info over to the CFS forum (I'm the Community Leader for the forum)
If you need to find a physician who knows how to deal with EBV and CFS... consider googling "Co-Cure's Good Doctor List"
http://www.articlecity.com/articles/health/article_5855.shtml -- What Causes CFS --- by Dr. Mark Shaw
Plateletgal-
Yes, my doctor actually called Stanford for me to see if I could be included in their study. That was last year when she called and they could not fit me in until sometime in 2009! So at the time it was about a year and a half away. We declined, which is a good thing now because I have a surrogate that is pregnant with twins and they are due in Feb of 2009. I have been thinking about trying the valcyte. The only problem with me and valcyte is that I have chronic low white blood cell counts. Mine are always in the 3.2-4.5 range. I have had a bone marrow biopsy and some other tests to rule out any kind of blood cancer.
My CFS symptoms include-severe exhaustion in general and especially following any sort of mental or physical excercise, sore joints, brain fog, unrefreshing sleep for sure, night sweats for several years, tender lymph nodes, balance problems, virtigo, and food intolerances.
My doctor has pretty much ruled in CFS. I may still try and get into Stanford, but now I need to wait until after the twins are here and maybe a bit older than the newborn stage. The thing with me is that my symptoms will be here for months, this last round was about 11 months of pretty constant symptoms, and then it will lighten up a lot for months or even a year or so. My EBV numbers seem to be always elevated and very very high. Right now my symptoms are pretty light, unless I over extend myself. If I do that then I am exhausted for a good few days. I'm just worried about doing the Stanford valcyte thing because if I were to feel worse when the babies come, I don't know how I would be able to take care of them. I wonder how long that stage takes before you turn around and are feeling better?
I will google the Co-cures Good Dr List
Yes, my doctor actually called Stanford for me to see if I could be included in their study. That was last year when she called and they could not fit me in until sometime in 2009! So at the time it was about a year and a half away. We declined, which is a good thing now because I have a surrogate that is pregnant with twins and they are due in Feb of 2009. I have been thinking about trying the valcyte. The only problem with me and valcyte is that I have chronic low white blood cell counts. Mine are always in the 3.2-4.5 range. I have had a bone marrow biopsy and some other tests to rule out any kind of blood cancer.
My CFS symptoms include-severe exhaustion in general and especially following any sort of mental or physical excercise, sore joints, brain fog, unrefreshing sleep for sure, night sweats for several years, tender lymph nodes, balance problems, virtigo, and food intolerances.
My doctor has pretty much ruled in CFS. I may still try and get into Stanford, but now I need to wait until after the twins are here and maybe a bit older than the newborn stage. The thing with me is that my symptoms will be here for months, this last round was about 11 months of pretty constant symptoms, and then it will lighten up a lot for months or even a year or so. My EBV numbers seem to be always elevated and very very high. Right now my symptoms are pretty light, unless I over extend myself. If I do that then I am exhausted for a good few days. I'm just worried about doing the Stanford valcyte thing because if I were to feel worse when the babies come, I don't know how I would be able to take care of them. I wonder how long that stage takes before you turn around and are feeling better?
I will google the Co-cures Good Dr List
Hi Carisa,
Would you like me to PM you the same information I sent to dazedmom ? There are some antibiotic protocols (believe it or not) that are targeting the mycoplasmas and other pathogens that are probably responsible for the immune dysfunction seen in CFS patients. In fact, many people with autoimmune illnesses are having success on antibiotics as well (google "The Roadback Organization" and read testimonials). The treatment that I recently switched over to doesn't use antibiotics, but is successfully targeting these pathogens. Dr. David Jernigan is also successfully treating many lyme patients and his natural formulas are killing the Borrelia infections in these patients.
"Recent reports and publications indicate that in addition to mycoplasmal infections, CFS/ME and FMS patients have other chronic infections caused by other intracellular bacteria and viruses."
"Patients with CFS/ME and FMS can also have viral infections that complicate their conditions and cause morbidity."
~ Dr. Garth Nicholson - The Institute of Molcular Medicine
As far as the anti-viral treatments, my concern is how much they suppress your immune system. My Endocrinolgist also called Dr. Montoya at Stanford and said that Dr. Montoya's results from his second study (over 1,000 CFS patients) should be released shortly. He told me that he had success with the second study and so CFS physicians are anxiously awaiting. He may want to put me on Valcycte and I'm going to have to think about it. The protocol I'm on now takes longer..... but it isn't as risky as Valcyte. The only concern about this protocol is the herxing symptoms.... you feel worse on this treatment because it is killing the pathogens in your body and as the pathogens are dying.. it makes you feel like you are detoxing. It adds some stress on your organs and so you have to adjust your dosage accordingly.
With your low, but normal, WBC.... that is definitely a concern. I was reading about Valcyte on Dr. Podell's website and this drug does have some concerns. If I remember right, Dr. Podell had suggested using it on people who are disabled only. That may be why your physician is reluctant to prescribe it for you.
Would you like me to PM you the same information I sent to dazedmom ? There are some antibiotic protocols (believe it or not) that are targeting the mycoplasmas and other pathogens that are probably responsible for the immune dysfunction seen in CFS patients. In fact, many people with autoimmune illnesses are having success on antibiotics as well (google "The Roadback Organization" and read testimonials). The treatment that I recently switched over to doesn't use antibiotics, but is successfully targeting these pathogens. Dr. David Jernigan is also successfully treating many lyme patients and his natural formulas are killing the Borrelia infections in these patients.
"Recent reports and publications indicate that in addition to mycoplasmal infections, CFS/ME and FMS patients have other chronic infections caused by other intracellular bacteria and viruses."
"Patients with CFS/ME and FMS can also have viral infections that complicate their conditions and cause morbidity."
~ Dr. Garth Nicholson - The Institute of Molcular Medicine
As far as the anti-viral treatments, my concern is how much they suppress your immune system. My Endocrinolgist also called Dr. Montoya at Stanford and said that Dr. Montoya's results from his second study (over 1,000 CFS patients) should be released shortly. He told me that he had success with the second study and so CFS physicians are anxiously awaiting. He may want to put me on Valcycte and I'm going to have to think about it. The protocol I'm on now takes longer..... but it isn't as risky as Valcyte. The only concern about this protocol is the herxing symptoms.... you feel worse on this treatment because it is killing the pathogens in your body and as the pathogens are dying.. it makes you feel like you are detoxing. It adds some stress on your organs and so you have to adjust your dosage accordingly.
With your low, but normal, WBC.... that is definitely a concern. I was reading about Valcyte on Dr. Podell's website and this drug does have some concerns. If I remember right, Dr. Podell had suggested using it on people who are disabled only. That may be why your physician is reluctant to prescribe it for you.
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