Nerve, Joint, and Muscle Pain

[sunny1964]

Hi All,

For over 3 years I've been experiencing nerve, joint, and muscle pain as well as some other symptoms that I assume are related.  I'm starting to lose hope that I'll ever feel healthy again but I'm trying to live my life as well as I can despite the pain/stress.  It all began in March, 2011 after a trip to Thailand where I had an encounter with a CSW.  Since then I've seen many & various types of doctors with no relief or explanation as to what might be causing my problems.  Throughout it all my routine blood work has been normal and I've tested negative for all STDs except HSV1.  I've had cold sores since I was young and have been told that it's not likely the cause of my current symptoms.  My doctors have been adamant that this isn't something I caught sexually.  I believed it for a while but I don't now.  My girlfriend of the past 2 years also seems to be experiencing some of the same symptoms since August, 2013.  Now I'm terrified I've given her something that could also eventually cause her as much pain as I'm in.  One thing I have found out is that I do have EBV which has been active at least 3 times since this all began.  Perhaps this can be responsible for at least some of the symptoms but I'd be surprised if it could answer for all.  In any case...I'm hoping that someone on here might have some useful insight/direction to help with my case.  It feels like, with all of my symptoms, there should be a more clear cut explanation.  My original story can be read here  http://www.medhelp.org/posts/Herpes/Prolonged-Symptoms/show/1651265#post_7518854 or on my profile if that link doesn't work.

The initial symptom I experienced back in March, 2011 was folliculitis (inside thighs) followed by scrotal itching/burning.  These occurred about 3 weeks after my night of poor judgment.  Shortly thereafter the calve, ankle and foot pain began on my right side.  In the beginning, most of the pain was right sided but it has since become bilateral.  The following is a list of my current symptoms which have progressively gotten worse.

-chronic fatigue and lethargy; foggy brain, hard to focus, and dizzy at times.
-dull, achy, headaches
-itchy/burning scrotum, buttocks, and perineum.  Has gotten better since 2011 but still present.
-pain at tip of penis after urinating/burning feeling in muscle on left side of groin.  I've been to 2 urologists who found no significant problems.  This has gotten better since 2011.
-chronic sore throat (started Dec. 2012) with burning sensation.  Upper teeth, tongue, and inside cheeks w/ burning sensation (right side).  Skin on cheeks seems to peel a thin layer of skin daily.  ENT found GERD but it has since gone away although symptoms persist.
-Achilles heel pain (since beginning).
-dull, achy muscles/joints in my calves, ankles, feet, knees, sternum, arms, hands, shoulders (bad), and lower back (bad).  Joints often itchy and warm feeling internally.  
-fasciculation (mostly calves, torso, arms).  
-intestinal upset (started Aug. 2013) with aching, burning pain under right ribs and radiating to mid back area.  This began with lots of gas/pain which lasted 3 months and involved 2 trips to the ER.  The pain is still present however and I'm trying to determine if it changes with diet.  I've realized some things make it hurt (coffee, alcohol, sugar).  This is one of my worst symptoms now.  I've had an endoscopy and ultrasounds (bladder, kidneys, liver, gall bladder) without any significant findings.
-eye pain and irritation (started Aug. 2013) with slight burning sensation.  Eyesight deteriorated from 20/8 to 20/20 vision overnight.  It has since come back slightly.  Sensation of blurriness or a film at times.  Slight discharge in mornings.  Black floaters constant.  Ophthalmologist finding showed no major issues.
-development of itchy (sometimes burning) skin around nipples, under armpits, and near eyelids.  
-growth of "skin tags" under arm pits and smaller skin "bumps" on right side of torso.  The skin tags mostly fell off after 1-2 weeks.

Well, I know that was long so I hope I haven't weeded too many helpful souls out.  I do believe that whatever I have is infectious but can't convince any of my GPs to refer me to an infectious disease doctor.  Thanks for any help or advice you care to provide.  





    

[mkh9]

Well the chronic active form seems to be mostly in children but the chronic EBV is in adults. You can get treated with Acyclovir to knock it down. I don't know if the doctor would be willing to try this or not. Also, there is some research on trying to boost your immunity with immunoglobulin or even IV immunoglobulin and alpha interferon but this is more for the active form in kids and it is still being investigated. Regarding the Lyme testing the site I gave you has more sensitive  and specific PCR than the antibody testing that a lot of sites do. This lab does do antibody testing but they have a better way to do it. So if you come up negative you may try IgeneX and double check. If still negative and negative for the co-infections then you are negative.  Apprantely, the Active chronic that is usually in kids is "clonal proliferation of T cells containing EBV DNA or EBV was positive in one patient in CD4 cells, also they found using PCR test with EBV encoded small RNA EBER probe they detected EBV DNA in lymphocytes . I don't see why they wouldn't detect EBV in lymphocytes if you have it as a chronic disease anyway since it hides out in the lymphocytes and nerve cells. But I assume they must have done a biopsy to get the testing material of the lymph node and that is no fun. I am just reading a article from my journal from the American Society of Microbiologists. I have to ponder this a while since it is complicated. So what you were asking was ways to detect it so one group used teh probe I mentioned above the "EBV encoded small RNA EBER probe". This may have been a particular research lab. Not done in a standard clincal lab though. However, checking CD4 cells is by flow cytometry. I don't know if they can check for EBV as a standard tool. It sounds researchy to me. I'll look further for ways to detect it. But I think you have chronic EBV but can you get treated yes I think with at least Acyclovir if you ask them to try it. I'll give you the articles but I don't think you have the active chronic since it is in children and rather you have the chronic which is in adults.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3245398/

http://cmr.asm.org/content/4/1/129.full.pdf

There are more. But maybe looking at the chronic ones are better.
more later.
mkh9

[mkh9]

I have some articles for you and information. But I have to gather it and I just got back from a blood test and so forth. I was wondering are your VCA and EA IgG antibodies high each time you get a EBV recurrance or do you get tested? That is one of the signs of chronic active EBV.
thanks,
mkh9

[sunny1964]

Thank you very much for your response.  I appreciate it more than I can express to you!  I'll have to look more into the chronic EBV as I've been over to southeast Asia 4 times now.  Mostly Thailand but some other countries as well.  Do you know if there is a specific test for that strain of EBV?  I'll do my research and then ask my doctor if he knows anything about that.  I'm hoping to see him early next week.  My immune system has definitely been down and out for many years now.  My doctor (most recent) checked me for Lyme with a single test and said it was negative but I'm not sure what type of test it was.  I'll also ask him about that and take the other tests to rule out Lyme if possible.  I don't know a whole lot about Lyme disease but my friend is a nurse and has told me that my symptoms match very well to cases he has seen in the past.  

As far as parasites go, I did do a 21 day water cleanse last October after my stomach issues started.  It started out fairly smooth but got more difficult the longer I went.  I finally had to stop after the 21st day because my stomach was so painful and making so much noise that I knew something wasn't right.  The next day I passed 2 different types of parasites and quite a few of them.  As best I could tell they were all dead.  One type was a reddish brown thread like worm (1-1/2") and the other looked like a cooked kidney bean with legs that folded back against it's "body".  I'd see 50+ of each type every time I had a bowel movement.  To be honest...those kidney shaped things looked very strange...very alien.  I wasn't even certain what they could be at first but don't know what else they could have been.  I passed them for the next 3 days and finally went to the doctors to receive some pills that supposedly would kill any parasites in my system.  I brought them some samples but they said they couldn't identify them at all.  The one doctor said that they definitely looked like parasites to him.  Admittedly the samples had dried out quite a bit before they got them sent off to the lab.  Now I'm wondering if there are still some of these in my system even though I took the pills they gave me.  The one doc says "no way" to that.  

I have hemochromatosis (genetic iron overload) that I manage with quarterly phlebotomies so I know I'm not anemic.  And so far all my liver enzyme tests have been normal.  The other thing is I do have some heavy metal concentrations in me that my doctor said we need to address (lead, cadmium, and mercury).  Not sure where all those came from but I do know we need to get them lower.  I'm sure that hasn't been helping my immune system either.  

I'll update you regarding my further Lyme testing as it would be great to have some support if any of those do turn out to be positive.  Thanks again for your feedback and take good care!

[mkh9]

Hi and sorry you are having all these problems. It is possible you have a rare strain of EBV that came from Asia that is chronic active EBV. Which makes your symptoms worse than usual. It would explain most of your symptoms.  I think the Chronic fatigue, brain fog, chronic sore throat or mouth sores or pain, achy muscles, may be from the EBV. Also, this may lower your immune system so you get opportunisitic organisms that you normally wouldn't get and would fight off. So, the scrotal itching, burning may be a fungal infection. which you can try a topical anti-fungal such as Lamisil topical or one with Terbinifine in it. I"m not sure if the EBV would cause the eye problems. You may want to double check with the following tests:
Go to a Lyme website such as http://ilads.org and get a lyme literate doctor in your area to see if you have lymes disease and/or the co-infections that go with it such as Bartonella, Babesiosis, Ehrlichiosis. A lab called IgeneX does all these tests and is very accurate but there are others you can send your blood test to. Be sure it is a PCR or molecular based test. They are more sensitive. If any are positive you may want to see a Lyme literate doctor  Eye problem may be caused by this too or a parasite. But get the testing first and we can talk later. The floaters are normal. You will always have them. I have them too!
Also, you should check your complete blood count to see if you are anemic and your Iron level with a ferritin test.
check your liver enzymes make sure they are not high.

The pain under your ribs may be due to the GERD.
hope this helps.
mkh9