Even more questions!

[phpmom2four]

I thought I would start a new post because I have a ton more questions after my doctors appointment.

My doctor has basically decided that I have CEBV which he states is basically CFS.  He also says that there is nothing that can be done and that I just need to get more rest.  I already feel guilty that I take naps during the day and that I don't spend as much time with my kids as I want.

I finally convinced him to refer me to a Rheumatologist.  So now for my list of questions:

1.  Is CFS and CEBV the same thing?

2.  Can CEBV or CFS cause uncontrollable muscle twitching, tingling in the hands and feet, numbness, loss of balance (almost like vertigo), and muscle weakness?

3. My doctor said that I couldn't have an autoimmune disease because my ANA marker came back negative, but my  mom has MS and she said that there is no ANA marker for MS.  Should I be asking for more testing?

4.  I realize that there is no "cure" for CFS or CEBV, but is there any medicines that might treat the symptoms?

5.  Someone told me on my other post that I should have my T3 and T4 levels tested and also be tested for the Hashimoto antibodies, but my doctor said that there was no need.  Can I request this testing or does my doctor have the final say?

That's it for now.  Thank you for your time.

[Jules77733]

"Reports of unusually severe lymphoproliferative disorders associated with extremely high antibody titers against Epstein-Barr virus (EBV) have recently increased. The syndrome, which we designated severe chronic active EBV infection syndrome, is characterized by persistent or intermittent fever, lymphadenopathy, and hepatosplenomegaly and primarily affects children and young adults"

Here are two abstracts for journal articles that mention it:

http://www.ncbi.nlm.nih.gov/pubmed/15750464

http://cmr.asm.org/cgi/content/abstract/4/1/129

I figured the reason it wasn't mentioned was likely a result of your bloodwork not showing an "active" infection, but I guess the terminology of "severe chronic active Epstein-Barr Virus" isn't widely used, yet. In one of the journal articles I was reading about it, which involved studies done with children and young-adult Japanese patients, they had a list of criteria that a person had to fulfill in order to be considered afflicted with SCAEBV. EBV tests were included in this list of criteria, and the EBV Ab VCA, IgG being greater than a certain number (~5,000 I think) was proof of SCAEBV. But aside from having a high titer for that, the person also has to fulfill other criteria, which is why I was asking you about other bloodwork and symptoms...certain bloodwork results and symptoms were observed in the patients they monitored (who had high EBV titers), which set them apart from the rest of the EBV-stricken population. They decided to call it SCAEBV.

Sorry if I confused you with any of that. SCAEBV is just another way to refer to a condition doctors can't really describe yet, I guess. It's like Chronic Fatigue Syndrome. It'll probably take some time, but eventually SCAEBV will make it into the medical curricula, especially since there seems to be a good amount of scientific literature on the topic.

Regardless, I hope you're able to receive treatment soon, and start feeling better. Keep us posted on how you're doing! =)

[PlateletGal]

Best of luck with your rheumatologist appointment. I hope that you will keep us posted.

(( Hugs ))

PlateletGal

[phpmom2four]

PlateletGal - My husband spoke to a Rheumatologist, that works in the same building as him,  and he wants me to come in a see him even though he isn't the Rheumatologist my doctor recommended.  He said that he would like to run some more extensive tests and he was shocked that my doctor was so quick to hand over a diagnosis and then dismiss me.  I have read through all the stuff you gave me and I am a lot more informed and have a good feeling about getting this figured out.

Jules77733 - My doctor said that he has never heard of SCAEBV and that if I had an active infection it would have shown in my test results.  The Rheumatologist I am going to go and see said he has experience with CEBV, so that is promising.  Thank you for the information about CFS and CEBV.

[Jules77733]

CFS and CEBV aren't the same thing in that you can still have CFS without having moderately high EBV titers. I'm not sure if you can have CFS without having any EBV results, but I know you can have CFS without having certain VCA or EA EBV results being positive. CFS is basically a name given to a general set of symptoms that...well...doctors haven't quite figured out how to interpret at this point in time. CEBV is much more specific, as it refers to your EBV bloodwork.

That's just how I understand it...I hope this helps!

phpmom2four--did you talk to your doctor about SCAEBV, or did your doctor mention it? I'm guessing he/she didn't since the first time around, they thought you didn't have an active infection. I was just wondering if this came up at all, because as I recall, you had REALLY high levels of EBV Ab VCA, IgG.........that's what really sticks out for me as warranting further investigation, especially if you're only feeling worse as the years progress.

[PlateletGal]

"Is CFS and CEBV the same thing?"

IMO and from what I've seen and read.... yes. But I think it is important that your physician doesn't diagnose you right away with CFS and if he/she does diagnose you, that he/she rules out MANY other conditions and performs NUMEROUS tests on you. You could have another condition, but may not be testing positive for it yet. You may want to read my journal about a new institute (The Whittemore Peterson Institute) that is now treating and doing research on CFS, ATYPICAL MS and other neuro-immune illnesses.

Although EBV isn't the only possible "trigger" that can cause CFS symptoms. For instance, the co-founder of Petsmart and his partner both came down with a flu virus. After they were ill, they never recovered. Both of them ended up being diagnosed with CFS.


"Can CEBV or CFS cause uncontrollable muscle twitching, tingling in the hands and feet, numbness, loss of balance (almost like vertigo), and muscle weakness?"

Yes ! Muscle twitching are more signs of fibromyalgia and many CFS patients have symptoms of fibromyalgia. You may want to talk to your physician about taking magnesium (if you aren't already). I also have tingling in my hands, feet and the vertigo and muscle weakness.

Do you have unrefreshing sleep ? Headaches and muscle aches ? Any cognitive problems ?

"My doctor said that I couldn't have an autoimmune disease because my ANA marker came back negative, but my  mom has MS and she said that there is no ANA marker for MS.  Should I be asking for more testing?"

If you haven't had an MRI of the brain yet... you may want to ask your physician to order one and/or a spinal tap. btw... there is a national lab that apparently can diagnose fibro & CFS on spinal fluid, but the test is still in the research phase. Insurance will probably not cover this test. But if you are interested, you can google the lab's name "Red Lab USA" and find their website for more information.

"I realize that there is no "cure" for CFS or CEBV, but is there any medicines that might treat the symptoms?"

Yes ! And there are some pathogen zapping (as I call them) treatments that apparently are curing some people with CFS and even some autoimmune conditions. Here's a link:

http://www.medhelp.org/health_pages/Fibromyalgia/Treatments-for-Chronic-Fatigue-Syndrome/show/453?cid=39


"Someone told me on my other post that I should have my T3 and T4 levels tested and also be tested for the Hashimoto antibodies, but my doctor said that there was no need.  Can I request this testing or does my doctor have the final say?"

IMO.. you definitely should have your thyroid levels checked. If your levels are normal (but on the lower side), consider asking your physician to order a T3 reverse and print this info for him or her:





T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."


Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/fibromyalgia-treatment.htm



Have you been tested yet for lyme disease ? If not, I would recommend getting the lyme disease by PCR test. ( Lyme Borrelia Test (CPT: 87476 ) )

[phpmom2four]

Thank you for the welcome, it is nice to find a forum with people that understand what is going on.  I asked my current doctor if I should see a nuerologist, but he said that there wasn't a reason.

I do get lightheaded sometimes and other times it feels like my scalp is crawling.  So far all I have gotten is bloodwork and I am hoping maybe the rheumatologist will run some more tests and refer me to a nuerologist so that my insurance will pay for it

[Padro46]

Hello,

First let me say welcome, I wont go into my history with you (you can read on this site and others) but in short alot of what you have going on I have also,  Mine started Dec of last year healthly up to that point the ONLY thing any one could find was high EBV numbers.  Currently I am seeing a Neuro due to Tingling/Numbing in the back of the head, feet and face area.  My Nuero thinks its possible that this may have been left over from the Viral infection, however he is trying to rule out MS and other Things. Did fail the ear test (BAR I think) MRI, MRA Bloodwork, etc.  You might want to think about a Nuero consult if it is indeed left over effects from Viral(EBV) Infection.    Padro 46