This is a long story...Since about 2 years ago I started having congestion in my chest, it developed into a chronic rhinitis/sinitis, then I started having muscle cramping (mostly upper body), that later changed into numbing of my limbs. I became pregnant at that time and the muscle troubles (numbing) went away. About 3 months postpartum I started having the muscle cramping again, which - again - changed into a muscle numbness; Now hold your horses: that changed into muscle twitching (!!) first all over my body and then also in my toes. The twitching/weakness moved up to my hands/fingers!! I also have muscle tremmors and a terrible pressure in my head and feel like I wobble all the time, especially my head now...Terrible isn't it? SO many weird symptoms and no answers...
I went to a neurologist (among other specialists) and he said that there is nothing seriously wrong with me and that it could by my hormones, my EBV,...but didn't really know. Could it be Chronic Fatigue Syndrome???

PS: had MRI done - clear; blood tests are clear except elevated EBV

This is a long story...Since about 2 years ago I started having congestion in my chest, it developed into a chronic rhinitis/sinitis, then I started having muscle cramping (mostly upper body), that later changed into numbing of my limbs. I became pregnant at that time and the muscle troubles (numbing) went away. About 3 months postpartum I started having the muscle cramping again, which - again - changed into a muscle numbness; Now hold your horses: that changed into muscle twitching (!!) first all over my body and then also in my toes. The twitching/weakness moved up to my hands/fingers!! I also have muscle tremmors and a terrible pressure in my head and feel like I wobble all the time, especially my head now...Terrible isn't it? SO many weird symptoms and no answers...
I went to a neurologist (among other specialists) and he said that there is nothing seriously wrong with me and that it could by my hormones, my EBV,...but didn't really know. Could it be Chronic Fatigue Syndrome???

PS: had MRI done - clear; blood tests are clear except elevated EBV

How about your thyroid? Has that been checked? Thyroid and EBV seem to be so interrelated.

No, they haven't checked my thyroid..I guess that's what I got to do next...Can I ask you why do you think that EBV and thyroid are related? I would like to know.

No, they haven't checked my thyroid..I guess that's what I got to do next...Can I ask you why do you think that EBV and thyroid are related? I would like to know.



If you are hypothyroid you have many of the same symptoms of EBV. Chronic fatigue, malaise etc. The symptoms are very similar. Check out any of the websites on both disorders and you will see that too. I don't know if anyone has made a connection between these two disorders but to me it is like which came first: The chicken or the egg? My thyroid was tested in February due to my inability to lose weight, fatigue etc. Recently, I have had numerous bouts with hives. An allergist did some blood work on me and found the EB antibodies. He also believes they are connected.

Thanks for the quick response; I guess the biggest issue I am dealing with is that none of the doctors that I went with ( an allergist was also one of them) believe in EBV complications. They either say "we all have it" or they just smile at me...
Too bad you are in NY; I am in California so I guess you can't give me recommendation for a good "EBV doc".:(

Hi I live in California, and I can suggest a doctor for you to see. You can also find info about him on the internet. His name is Dr. Michael Powell. He is in Sacramento. He deals in bacteria(s), EBV, CMV, (virus's) , he will also check your thyroid alot better than other doctors do. He has the Fibromyalgia Treatment Center on University Ave. He is a researcher, I guess is the proper title for him. He looks into many other researcher's protocol's. He does studies at Stanford. This man is brilliant!

The one bacteria that he looks into is the chlamydiae pnumoniae bacteria. Majority of the population has this bacteria and it causes sooo many other disorders such as dementia, alsheimers, fibro, some cancers, M.S....ect..ect...

You can find other studies done by Dr. Charles Stratton, and the Vanderbilt protocol.

Dr. P will not look at you as being crazy with titers for the EBV and CMV virus's. From what I have learned by reading material on the net by Dr. Martin Lerner and Dr. Shoemaker these virus's can cause many conditions. They are herpes....so the every day run of the mill doctor is NOT going to understand virus's nor bacteria's. If they did majority of us wouldn't be having the problems that we are having. From what I understand even though we show titers in our system for EBV or CMV as past infectons...they STILL are in our system and CAN cause problems...I know from my own personal experience this is true....

I am on antivirals and doing alot better:)

I have talked to other people that see Dr. P and they are very happy with him also. A person has to remember that what works for one person may not work for them. It does take along time to find that perfect protocol. But it sure beats jumping from one idiot doctor to another...

Hope this helps...

:D

P.S. I live 3 hours away from his office. I know other people that live far away also. After the first visit or two you could request doing phone appts....

have a good day..

:D

Hi Jojo,

thank you for the wonderful input. Since I have a 3 month old baby it would be hard to travel to Sacramento so I think I will just call and ask for a recommendation closer to where I live.
Also, what do you think about seeing a virologist? Do you have any experiences with that?
And those anti-viral drugs, are they specifically for EBV and what are their names?

Thanks!

Hello Kickstar,

What exactly are your symptoms? Were you having these before the baby and during pregnancy?

I would imagine going to a virologist is better than going to a regular doctor.

Hope you find answers!

:D

Yes I did, but some of them kind of went away during my pregnancy (the numbing) and now they came back...I am almost positive that it is EBV.

Regarding the treatment, I guess I am just going to be eating vitamins and wait this "thing" out.....Because truly, I don't think any doctor could help me with this, except advising me on taking a rest and eating well...

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hello kickstart.. i have the same symptoms as u n more... i have twitching numbness tingling loss of appetite cant feel the urge 2 urinate and dizziness.. this happened right after i had my son.. i was given a spinal anesthesia 4a csection// i think thats what caused it... i had soo many tests all clear cept my emg.. she thinks its myopathy i need 2get a blood test done and maybe a muscle biopsy. anywho.. how r u doing now with ur symptoms n all.. talk to u soon! take care..bye