I think a lot of times doctors say it's all in our heads when they don't have an answer. Far be it for them to just say "I don't know". This seems to be a recurrent theme for those of us with FMS and CFS and/or EBV.
My doctor won't retest my vitamin D after it got up to the barely within normal range,even though it started at almost non-existent. It seems to me that she should test it again, since it's possible that it has gone down. But, how would I know if the doctor isn't willing to test it again? She won't test for EBV either, even though I've had Shingles twice in the past five years. She said that everyone tests positive. Yeah, but what about those with higher titers? She won't even test for that either!
I hope you are continuing to supplement your vitamin D and B 12, especially with not having any insurance. I have to do the same thing, even though I do have insurance.
It sounds like you need a NEW DOC!!! I go through the same thing with some doctors but recently found a Nurse Practitioner that was in tears with me one day talking about my symptoms and frustration with no diagnosis. So she wants to help but her knowledge is limited. She still hasnt been able to get me any answers.
Change doctors!!!! and good luck
Cancer, I'm not sure if the virus has caused cancer in your body, but I know you are not crazy. I was diagnosed with EBV a little over a year ago and it has really run down my body. My heart goes out to you, and your family. I know how difficult dealing with this thing can be. I swear I have all the symptoms you mentioned. For example, UTI/ irritation that seems to come and go. Dizziness, lightheadness, inner pains in my stomach, legs, kidney area, liver area....and I can even feel the virus when it is in my head/ bothering that area. I have tested for other causes, but it comes back to EBV. I don't know why I don't have a mild case of it like most people....but still, it is causing real symptoms.
I'm 25, and I should have my entire life ahead of me. But with this thing inside me, I'm not sure if I'll be alive in the next 5 years....because I know my organs are being attacked day and night. Doctor's aren't helping me much, and I, just like you, have not had medical insurance for the past year. But if your body really hurts you, go to the E.R. and maybe charity care will pay for that visit.
Yeah, the lightheaded and dizziness is really hard to deal with. You feel like you can just pass out...and be dead on contact. I try to eat healthy and take herbal vitamins, but still, it doesn't seem to be quite enough. But I might have one good suggestion. Another person with EBV said they went to an infectious disease specialist and they tested not only his EBV but also his herpes levels, which were high. EBV is from the Herpes family...anyway, they tested that and his DNA...and they found that the viral overload was taxing his immune system so much. They actually prescribed some type of medicine to treat him.....not Valcor...I don't have medical right now, but I'm going to see if I can save the money and visit the doctor. Good luck, I know you are just looking for help....and that's why I am glad I got to see your post....we both are sane people trying to deal with a tough situation. But luckily, you already have the kids, you found a good partner, and you are researching what can be done to enable you to deal with/ live with this virus.
Sorry for all your problems.
I have EBV I am also hypothyroid and I have Hashimoto. I do not know your thyroid levels but, from my own experience, with Hashimoto the TSH should be around 1. Forget about the levels on the paper.
Anyway, once I start taking the thyroid medication my brain fog, dizziness and most of my joint pains went away. And I am not so tired anymore.
Look also into vitamins you can take to help you, like B12 or others.
You should look for a doctor that will listen to your problems, I got mine.
Thank you for your replies. all the info I can get helps. I know nothing about this stuff becasue I have left my health in the care of doctors for years and recently decided to take things into my own hands. So I pulled all my labs from the last few months to research them. please let me know if you can be of any help....
My ANA was Negative lat month when they tested it.
MONOCYTE 11 STATED TO BE HIGH
here are my epstein barr test results. I dont know what they mean yet but . .
EBV NUC Ab > 8.0
EBV EAD Ab 8.0
EBV VCA Igm 0.9
CBC Value Reference
white count: 6.8 4.0-10.0 K/uL
red blood count 5.22 H 4.20-5.20 M/uL
Hemoglobin 16.2 H 12.0-16.0 g/dL
carbon dioxide level 30
blood urea nitrogen 11
bun/creatinine ratio 14.5
glomerular filtration rate 93
glomerular filtration rate AA 112
FREE T4 .09
FREE T3 3.5
SMALL NODULE FOUND ON BOTH SIDES OF THYROID ONE IS 4.6X6X7.7 MM AND THE OTHER IS 4.9X7
RADIOLOGIST SUGGESTS THAT I HAVE ANOTHER ULTRASOUND IN 6 MONTHS TO SEE IF THERE IS ANY CHANGES. OTHER THAN THAT NOTHING.
Hi there I cannot comment on the nodes on your thyroid but I can comment on all your symptoms.I thought I was dying a few months ago.I have 2 little boys and I was not able to even lift a gallon of milk out the fridge I was so weak.I tested positive for EBV as well as Fibromyalgia syndrome and Hypothyroidism as well as adrenal Fatigue.I have also felt like this all my life and was also told of growing pains and things like that.My regular dr could not diagnose the thyroid problem as my levels came back low normal but to him was normal so I went to see a wellness Dr.He is my chiropracter too.He gave me one test which is the iodine patch test and I was totally iodine deficient.Apparently you need iodine in your body for you thyroid to function normally.I thought I was going crazy cause i was feeling like an 70 year old women and I am only 33.My husband was very supportive too in helping me find answers.I am taking all natural supplement as I feeel it best for me.If you want you can PM me and I could tell you what they are.They will by no means harm you if any help you at least a little.I really hope you find some answers and someone that will listen to you.You are not crazy and its not all in your head.The pain and fatigue are REAL!!!!. Wishing you all the best.
I too have very similar symptoms, have had them for over 15 years, progressively getting worse. When I came to your comment and noticed that you offered help to the other woman, i was hoping the same would hold true for me. Could I call you? I'm a 46 year old woman from Long Island, have had half a thyroid removed and arms that feel like lead! I too feel like i am 70 (maybe 80) years old from the way I am feeling. HELP!!! I'd love to chat with somebody who can understand me.
HI there SOrry you are feeling this way.Fast Forward to now and I am on Lyrica for my Fibromyalgia,SAM-E 400mg once a day,Vit B12 once a day,omega 3,I have also been told to take Adrenal support from the natural health store.YOu can buy one on VItacost.com.It has helped me a lot I take 1 tablet 3 times a day.All that together has helped me a lot.I do still have the pain from the Fibro but I manage it with 800 motrin from my rhumetologist.Have you seen one.She really helped dx me and then also just doing research.I also take a natural thyroid support too.
My natural Dr gave me this to read.It helped me a lot.Please read it.
I cannot take any of the anti - dep meds as they make me worse.
HI! Thanks so much for replying. I was waiting to get something in my email and never thought to check the site until right now. I'm going to speak with my MD about what you are taking. I am go grateful that I am not alone in this. I couldn't open your link that you sent me..can you resend to ebaymom at optonline dot net? Thanks!