I have been sick for over a year. It all started with a CMV infection, I suddenly became sick with what I thought was a very severe flu but it lasted for several months. My doc ran every test known to man: countless blood tests (EBV/Lyme/and everything else). I had CT/MRI scans, saw a Neurologist - all revealed nothing. Eventually I was tested for CMV. My CMV antibodies came back as indicating I had an infection at the same time as my illness. A year later I still have muscle aches, a sunburn like feeling, pins and needles on all hands and feet, muscle twitching on all parts of my body, headaches centred around the base of my skull/start of my neck and very constipated
My GP thinks that there is an undeniable link between the CMV infection and my condition. She tells me that there are anecdotal accounts of CMV causing MS. This is all well and good but my concern is for trying to find a treatment. I understand that there are antivirals available but my GP thinks that they are to risky. My condition "seems" to be slowly improving. A recent PCR test of my blood could not find any evidence of CMV.
My question is: Is it too late to do antiviral therapy. If not - do the risks of the therapy out weigh the benefits for someone that is "almost" back to normal save for the slight neurological issues? I'm worried that if I don't act - my condition could degenerate over time.
It is not too late for antiviral treatment, but we usually advise that immune enhancement be used first. Often that is enough, and it is much safer. Some antiviral drugs have side effects. Look into transfer factors for CMV strains and general immune enhancement supplements.
Oops...was reading too fast. I know you mentioned being tested for Lyme. Problem is more often than not it doesn't show up in a normal work up. Please research Lyme Disease, and if you are suspicious, please find a specialist who uses IGENEX lab. There won't be too many in your area. My symptoms also came on quicky, with muscle ache & fatigue, joint aches in knees & ankles, numbness, tingling, pins & needles in arms, hands, legs and feet, muscle twitching, buzzing legs if you will, characteristic of an infection. Normal labs and MRIs. Was told to wait & see if maybe it developed into MS. I'm not a wait & see type of gal. I've got 2 small children who need more that a wait & see mom. I was told by 10 doctors they had no clue what was going on, that I was healthy, that it couldn't be Lyme. Just tested positive for Lyme & have started treatment. You will be told it can't be Lyme, but if you are even a little bit suspicious find a specialist, please don't mess around with this, it's an awful disease!
Marion (Southern California)
The symptoms you described are exactly my symptoms! To the letter!
I have also had the same experiences with my doctor(s). I just came from an infectious disease specialist who said that "I have to get past thinking that this is cause from an infection". I questioned him about Lyme disease but he started going on about the life cycle of the deer tick in our region and how the bacteria does not have a chance to mature. Since when did an ID doc have Entomology expertise??
I have to go back to my Neurologist at this point. I will insist on a competent Lyme test and lab. I am still inclined to believe that my illness is caused by CMV as I tested positive for antibodies spiking during the height of my sickness.
Sounds like my motivation is the same as yours. I have 3 little boys who need me to be around. I was told the same thing by a doc - and just like you I am not very good at waiting around.
Strangely enough when I began getting sick I started reading about Autoimmune Disorders and the relationship to diet/lifestyle. I began reducing caloric intake, eating foods that a high antioxidant value and abstaining from fat/preservatives/chemicals - essentially following the Paleo diet. After about a week I start to feel better and my symptoms start to lessen. At times of stress I will fall back to eating jumk and low and behold when I do my symptoms get stronger and I start to feel sick again.
You will need to seek out a Lyme Disease Specialist. The test is around $200.00. Your nuero will either tell you there is no way you have Lyme or he will run basic test for Lyme which is often inaccurate. If you need help in finding a doctor I can ask my doctor for suggestions, she is in San Diego.
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