Connection between Epstein Barr, Mycoplasma and MS??

I have had crazy high readings on these infections and am wondering if any of you had the same type of high results?

No. All my blood work always comes back normal, no other infections or disease processes going on. This is of course at a usual annual physical, not when I might have gone to the doctor with a bladder infection, or cold, or flu, or something else non-MS related.

---

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Same here.  I have nothing in my blood work that indicates why I got MS.  My blood work looks really good - I even have really good cholesterol!!!  I am quite proud of that one.  Now if I could only get that blood pressure down!!!  :(

Love and prayers,

Gretchen did they test for mycoplasma? It was not on the usual testing after researching I requested it and that is when I found out...I will try and find the info regarding the link with autoimmune disease it is really interesting...

http://www.immed.org/illness/autoimmune_illness_research.html

There are many articles on this. This is just the first one that popped up...there is a really good one on mycoplasma stealth bacteria I will look for it....it is not a standard test I guess when I first got sick I exhausted myself looking for answers and mycoplasma and epstein barr was a big one. I guess what I have read is if there is a reactivated epstein barr you are 10X more likely to end up with autoimmune disorder...Also I am British and I guess there is some kind of research in location growing up? lots of info...too much brain fog to take it all in!

This was very interesting.  I am sure I have NOT been tested for mycoplasma.  How do they test for it since it does not grow in typical culture situations?  I am not convinced to get a blood test as treatments don't seem that good.  If you need an intact immune system and possibly years of antibiotics to defeat this sort of infection, that is not realistic for MS.  The treatment is in some cases as bad as the infection.  For me anyway, I am just not that sick.  I am doing really well with just my MS progression therapy. 

It is neat I have learned so much on this journey (wish I did not have to!) but it is interesting. Mycoplasma can attack most organs for example the pelvic area etc...
It is a simple blood test.... It takes rounds of treatment with I think doxycycline. My vitamin C becomes completely depleted and I think it is all the stupid bacteria as my diet is super. I do not even register on the vitamin c scale sometimes.
Just wondered if anyone else had high mycoplasma count out of interest :)

Thanks,

Carolyn

Mycoplasma infection is commonly called "walking pneumonia", a form of bronchitis.

Here's a website that describes it:

http://www.health.state.ny.us/diseases/communicable/mycoplasma/fact_sheet.htm

According to this, once it's treated with antibiotics, it's gone, and in fact some folks become immune to further infections.

There has long been studies about the connection between infections (bacterial or otherwise) and autoimmune diseases -- but look at the article you cited again: primarily the autoimmune disease link and the infection are cocurrent -- meaning happening at the same time, and it's not clear that there is a cause and effect. And also, in that same article, while it talks about MS, it also makes clear that more commonly the link is between inflammatory autoimmune diseases like rheumatoid arthritis or lupus, not MS.

I think they'll get this all sorted out one of these days. Just not yet.

---

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Mycoplasma is one of those bacterias that is great debate. CDC recognizes issues with it...there is a lot of research in that area. When I was first sick 2 years ago that was my first diagnosis walking pneumonea. It was the trigger for lyme and whatever else I am having issues with. The mycoplasma does not just stay in the lungs and it attacked my uterus. What is stated a lot is what comes first mycoplasma or the autoimmune disease/other disease. I was just interested if any of you had researched that area at all. Lyme is a different animal and I think that is why I always have so many quetions due to the complexity in diagnosis and treatment options. I think if I was not so sick right now I could chill a little more... Thank you guys for your help

Walking pneumonia a trigger for Lyme? I thought Lyme Disease is solely a tick-borne disease..meaning you get Lyme disease from having been bitten by a tick that is a carrier (not all ticks are carriers). Maybe it was the other way around -- you got bitten by the tick, had Lyme disease, and it triggered the mycoplasma?

That's the trouble...I'm not a doctor, and don't pretend to be one here.. :)

---

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

It is believed that lyme can lay dormant for a period of time and can be triggered by certain events/infections. when the mycoplasma get out of control it can open the door for so many cruddy things to happen. I think I was sick for a long time before I was diagnosed. There were 3 times in the last 10 years where my balance went and I was unwell and was diagnosed with "Some form of mild ensephilitis" no tap... makes you wonder....until you are sick and it does not go away you become complacent and just take the diagnosis and work with whatever you are given. It had got to the point there was no way you can ignore something that does not go away. One neurologist in my journey of about 14 dr's and multiple tests for lyme told me to find a good psyciatrist and have physical therapy...I wanted to knowck her over the head! When I picked up my blood work from her my SED rate had gone from 0-60 in 2 wks she had not even taken a look at the results to that point. The next neurologist diagnosed ensephilitis of unknown origin....just not good enough as I was told would get better and never did. This is over 2 years into this and is getting pretty old. I am on a tough antibiotic regime and just added plaquenil to the many meds. I took a break for a while but had to go back on. I am not sure how I feel about the neurologist I guess we are doing all the right things butnothing is urgent until it happens to ourselves! I guess the white scattered foci is what was needed to move fwd I knew with the mass of neurological issues something had to show up this time...either autoimmune or neuroborrealis and I will have to have the stupid PICC line in and IV meds every day again..roll on!!
The mri of the neck is wed. what do they look for on the neck? There are pictures of the neck on the head MRI why could they not just look at those?!

In case anyone else is reading this thread and is interested, here's a pretty clear description of encephalitis, cause, treatments, all that:

http://www.mayoclinic.com/health/encephalitis/DS00226

As for the neck MRI: The neck is a very concentrated part of your body.  Lots of bones, joints, nerves, blood vessels, other "stuff" coming from your brain to the rest of your body, all "squished together" there.   So while part of the neck may well show up on a brain MRI, they apparently want a more focused concentrated view of the neck through an MRI, to see if there are any lesions or other abnormalities there that might account for some of your difficulties.

You may well have chronic lyme disease -- which means it won't go away, it will recur, it will come back with intensity, and can cause neurological difficulties. Neuroborreliosis -- which is described here, for those who don't know --http://pn.bmj.com/cgi/reprint/4/3/152.pdf

can be a very debilitating chronic condition.

Basically -- sounds like all of what you're describing, including lesions on your brain -- can be attributed to your having Lyme disease which has become chronic. Chronic by definition means "not cureable", treatable  (in your case, with antibiotics) but you'll always have it, and while it may fade in intensity sometimes, it can flare up again -- which is what it sounds like is happening with you.

Let us know how your neck MRI goes..maybe they'll find something different in there.  Did you ever get a spinal tap? That might show a chronic infection of the central nervous system, too.

 

I activated your second link, Cat.

Thank you uppitycats. Unfortunately no one ever did a tap due to the fact they did not want to change the pressure in my brain as I have a meningioma on the saggital sinus. I am willing to take the chance at this point. As difficult as it is in bloodwork to capture lyme after being on antibiotic therapy it is the same in the spinal fluid. There will at least hopefully be inflammation markers that will guide us and let us know if I need IV again. Luckily there is a lot of changes taking place with the IDSA following a recent investigation and they now have to consider ALL the research that has been done to date they ignored about 98%!!!!! It was found that a number of members had financial interest in labs, meds etc. Awful considering how many people are suffering. Sorry get on my high horse makes me mad!! even if by some miracle I ever found out I did not have lyme I will be an advocate forever. being diagnosed with a brain tumor duing the ordeal was nothing compared to the hell of lyme. It was straight fwd with the tumor. Not so with the lyme. Seems like whatever the outcome with the MS possibility I have found some wonderful people in both healingwell groups that can guide me on this arduous journey. Having never chatted or really used the internet other than for work I am amazed at the support, faith and understanding available in these sites. It is true until you are in the situation it is impossible to understand. Family is awesome friends are great but there is a different level of understanding between people that have walked the walk. God Bless and thank you for all your help.

It's interesting you say this: "It was found that a number of members had financial itnerest in labs, meds, etc." I've claimed that for YEARS, and have been "poo-pooed" by Lyme "fanatics". My husband had Lyme disease -- fortunately diagnosed and treated in its very early stages, so he is fine, but I did a lot of research about it then (a couple of years ago) and came to believe that indeed many of the more vocal Lyme folks had a financial interest in identifying increasingly more people with Lyme.

Whenever anyone tells me -- and not just about Lyme Disease but about other illnesses -- stuff like

"only these special doctors (in this case "Lyme literate neurologists") can diagnose this illness, and only one lab can properly test for it, and only one treatment..." etc....and then when you go check that out, it's way expensive, or difficult to access, or whatever...

I get way suspicious. Admittedly we (my husband and I) live in an area where there is a lot of Lyme disease -- but my family doctor, a country doctor, not a neuro, not a specialist -- was quite easily able to diagnose the Lyme in my husband (and no, he did not have the typical rash) based on his history (he camps out a lot, and we live on 22 acres of woods and meadow), have it confirmed by a regular lab, and treated it. He did have a relapse and needed a second round of antibiotics, but otherwise it got treated and taken care of without a "lyme literate doctor and special lab tests" involved.

Anyway. I hope you get all this sorted out and on a treatment plan that is helpful to you.

---

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

http://www.ct.gov/AG/cwp/view.asp?a=2795&q=414284

It was actually found that the infectious disease society were the ones who were limiting treatment and that they had financial interest in the lyme testing! They refused to look at all the research from ILADS etc. (lyme literate DR's) you find most of them have lyme or some family member with lyme....and prrof of chronic lyme as appose to post lyme disorder etc..
It is a sad political debate an when you suffer with lyme all you want is treatment and answers the politics are the last on the list unless your insurance company refuses IV that costs aprox 6,000 monthly and 1 bottle of Mepron another common antibiotic is 980.00 per bottle! I have a friend in the final stages of ALS along with a confirmed lyme test but improper treatment. I think the "Lyme fanatics" become fanatics when they realize what it can mean to their life and the lives of people around them. It is financially and mentally devastating. Imagine...it took 5 -10 tests for some members to have a positive lyme test. What it tells us is there is no good test right now. I just had an e-mail from a mother in the area whose son was treated but not aggresively enough now he has bells palsy and can barely walk. He is only 8 yrs old and cannot play with his friends or even go to school. It was a case of the mother saying if I knew then what I know now...It is just assumed the Dr's know how to treat....It is not the DR's fault either to some extent..the IDSA (infectious disease society) has guidelines which the DR's follow. Imagine when they realize that they have ignored all the research available! I know my Dr would have a few calls to make.
I have mail ever single day from people suffering. It is hard as I am in my own battle right now.
The investigation hopefully will mean change which is long overdue. Awereness is key...I just intercepted something from the local government sent to patient first noting that there has been a dramatic increase in LD in the area...change is coming. I am so glad your hubby got treatment and is doing well that is a blessing :)
Either way I am tring to find light at the end of the tunnel (my tunnel is more than a little off balance right now!) Either result is not going to be easy either lyme treatment ongoing with picc line or oral antibiotics and treatment for ms.... What is happening now is far different in nature to what I hve dealt with in the past. Hard to explain.
I think the key for lyme is early diagnosis a simple bottle of doxy if there was a reliable test to catch lyme would actually mean much less expense to the insurance companies...
Sorry to waffle. I know this an MS site and it is just more complex for me due to the other condition I have. The information I want is on MS. Couple of neurologists think I need to be checked for ms so hopefully one way or the other I will get the treatment I need and be able to enjoy my 4 kids, 3 dogs, 1parrot! Lot to keep up with!
I will not waffle any more about lyme that is the last time! sorry if for any reason it has bothered anyone one :)

Post Edited By Moderator (rhondab) : 5/26/2008 10:26:22 PM (GMT-6)

Hey, you've not bothered me at all!

Just one more thought -- not about Lyme: When you read on a test -- like, on a "prescription" for an MRI, for example, something like: "test for MS"....that doesn't necessarily mean that the doctor thinks you HAVE MS...what it DOES mean is something like: "Look specifically in the areas of the brain where MS lesions might appear, to see if there is anything there. Maybe there will be, maybe not...but rather than wander around through the whole brain, I'm specifically looking to rule IN...or rule OUT...MS in this patient."

---

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Hey Carolyn,

I would hazard a guess that you have not bothered anyone here.  We just get upset when we have people come here and say that we don't have MS, that what we have is lyme disease and dumb doctors.  That is what we get upset about.  MS is a poorly understood disease but there are many of us that trust our doctors and our diagnosis and we believe that our MS is just that -  MS and not at all related to lyme disease. 

All the information you have shared has been both balanced and informative.  You are welcome here anytime to share, vent, or ask questions.

Love and prayers,

Hi gretchen,

Amazing isn't it? The lymies can't get a lyme diagnosis and vice versa with ms! For the most part i thought MS was something that was a genetic disposition or hereditary...crazy world. My oldest is in boot camp for national guard and at university hoping to go into the medical profession.  Lets hope the terrible issues he has faced makes an impact and he can be one of the good docs.

For what it's worth, Carolyn, I have enjoyed your posts for their information as you've obviously deeply researched your situation and are very informed. Plus my doctor immediately went down the road toward Lyme disease too originally... it seemed to fit well at first given my history as a Boy Scout Scoutmaster for 15yrs. 

I do hope you understand, Carolyn, that if you DO have MS, the common treatments for MS (Copaxone, Avonex, Betaseron, Rebif) are not cures, and won't alleviate any symptoms. You'd have to continue to take other medications that might help some symptoms, but they won't make them go away entirely, either.  Minocycline is used in some very limited instances for people with MS, and isn't a cure, either.

MS is not an easy disorder to diagnose.  It's considered a "diagnosis of exclusion", meaning they'll rule out everything else before declaring it -- which is going to be complicated in your situation, since you're dealing with the brain tumor and a possible chronic infection of the central nervous system (whatever it's cause -- Lyme, or something else).  I'm sure your doctor is trying to sort through all that.  It is not hereditary, in the sense of other inherited things. There is some genetic predisposition -- that is, some people with MS have other immediate family members with MS, but certainly not all.  And some people with MS have other family members with other autoimmune disorders...but again, not all.  There are lots of us who are "blessed" with being the only one in our family with the disease.  There is no known cause of MS, and no cure -- only the meds that have shown promise that they'll reduce the number and intensity of flares, or exacerbations of the disease.

The common drugs for MS (Copaxone, etc.), are all injectible medications, by the way. You will learn to inject yourself on a schedule for that medication -- some are daily, some weekly, and so on.  They are expensive, too -- around $800-$1,000 per month, generally covered by health insurance (if you have health insurance that covers prescription medications).

Thank you :) all we need is a diagnosis. You know my brain tumor was found incidently looking for the root of all my issues. I was prepared to deal with that blow and felt like OK now I know what I am dealing with...when I found out it was not related I was as we say in the UK gobsmacked! so then the drs feel that due to the trauma of that finding some of the issues must be psycological...I was sick that is why I had the MRI! not the other way around! There have been too many tests that were off. So slowly everyone realized something was wrong. My first dr primary care told me he really thought I might have MS and when the first MRI came back with no lesions and they said no ms he said all that he read said that there are not always lesions for a long time and he was still convinced......It is a shame that it has taken 2 years for someone to do LP and hopefully find some answers. Thank goodness every day is different. My speech has improved and I look for every improvement and try and concentrate on that. I am never "Normal" but I get tired of when relatives ask me how I am having to explain. Truth be known every day is crummy but what level of crummy. Now I just say fine. They are abroad so it is not like there is anything they can do to help anyway.
I hope you get your answers this week:) It is going to be a big week for both of us:) If God brings us to it he will pull us through it :)
I think the way we handle the illness says a lot about who we are. My faith is what keeps me going.
I wish that I did not have to research all the things I did but there was a point I could barely walk and was in a lot of pain and that drove me to find an answer. I have so much information and tests but no one cared enough to put all the peices together of the puzzle. Frustration is not the word....
I am too sick and have too much with a newborn to research much more. I just want someone to tell me what is going on and make things better. I am d-o-n-e!
I am tired of people looking at me like I am some kind of alcaholic as I weave through the grocery store and shake like a leaf when they give me my receipt. I almost want a t-shirt that says I am sick not drunk!
What a great contribution to have been a scoutmaster for so long. I can tell you are a great person and you know your attitute will be a great inspiration to others. Everyone has a story...no one deserves to suffer.... I don't understand some days but am one of those people that say OK these are the cards I am dealt where am I going to go with it. That is why I travelled all over the country in a quest for a diagnosis. I plan to be there and healthy for my kids and animals. I plan to volunteer again for Equi-Kids, I want to be a constructive member of my family and be strong enough to work hard and bring home some money.... and we do not own any disease. We do not claim it, name it, it is not ours..... Once we know what is going on I told my husband dont refer to it as my condition...the condition. :)

Prayers for you and good luck with the LP. Let me know how it goes I'll be right behind you :o !!!!!

Carolyn

Oh boy Uppitycats I guess I am in for another haul. What are the MS markers that the neuro looks for in the LP? Every day is kind of different. Some things are better some are worse but never am I normal is that something you deal with? consistent is always the weakness balance and tremors (just to different degrees) does that ever completely go away even for a while?

They are looking for 2 (or more) oligoclonal bands in the spinal fluid -- which will indicate a disorder of the central nervous system -- not specifically MS.  Let's assume for a moment that the doctor discovers those 2 bands in the spinal fluid. He will take that with other test results (perhaps the lesions seen on an MRI), and clinical signs (all those things you likely have been tested for in his office -- strength, balance, vision issues, whether there are signs of optic neuritis (an inflammed optic nerve), and any symptoms you've reported (things like the sensory stuff, the numbness, tingling, fatigue..) -- and if there are enough indicators of MS, he may diagnose your situation as MS.

Wow Uppitycats you are amazing you are still so positive. I am sorry you have walking issues. I am still walking although there are issues and one of the reasons I am panicking is that I see such a decline in a short period of time. I looked up the ms diagnosis process. good gosh. you would think there was a better way. How frustrating! nothing is easy. The tumor is not something that apparently causes any of the symptoms. I just store that issue somewhere in the back of my mind! (excuse the pun!) LOL have to laugh :) I have just wrote a letter to my dr via e-mail. I am trying to pull everything together and think of all the variables including what could have caused some bacterial infection similar to lyme like all the travel I have done over the years to africa, sri lanka, dominican republic etc to name a few. I really feel I am up against the clock now. too much deteriation too quickly. Praying for an answer.... thank you for your help. You are awesome.....very straightforward sometimes and it took me a while to figure out who I was dealing with! I appreciate you so much though and I do need a kick up the bum because I am tired uppitycats. I have never been to the point of just wanting to giveup. If you had been a fly on the wall for the last few years you would understand. Everyone has a story and issues and I plan to be there to lend a hand if and when I can. right now I really need a light at the end of the tunnel :( Dr told me I could up my 200mg provigil to up to 600...I need to make it through the day without a nap because of the baby and my husband cannot come home. Do you reccommend upping the provigil? I stopped it and other meds to see if it helped reduce the tremors...no different so upping it might help do you think?
Hugs,

Carolyn