I have been lurking here for a while. Back and forth from the Lyme board to this one. And I will admit I am scared. I am confused. I don't know what to do or who to trust anymore with my health. I need guidance and support.
I am in the process of being treated for Lyme disease. Though I have not had a positive test to it I am going to be treated based on a clinical diagnosis. I have many symptoms of Lyme and no symptoms of MS, except for lesions discovered in my brain and one in my spinal cord. (An Mri was done because of a severe stiff painful neck.) I had a lumbar puncture and according to the neurologist who called me today MS antibodies were detected. He wants to meet with me early Saturday morning to talk in person before he goes out of town on Spring Break with his family.
When I first consulted with him, only because of the lesions, he said I was lucky to have found this before I became symptomatic. He believed we can treat proactively and my prognosis is excellent. Yet, I was just informed by someone on the Lyme board that my neurologist is misleading me into thinking we can keep this disease from developing into a symptomatic disease.
I am on many supplements from my Lyme doctor. I have a heavy viral load, (HSV1, EBV, and micorplas..something or other which is bacterial.) My adrenal glands are not working, cortisol levels are way off, and i am vitamin D deficient. They have also prescribed Valtrex to help with the viruses. I have not been started on antibiotic treatment for Lyme because they wanted to wait to have all testing completed so as not to mask any of the results.
I know this is the MS board and not the Lyme. I am just giving you my background and what I am currently experiencing. Lyme is a controversial disease as many people know. It is rampant where I live and I know of many people who have it.
So, here I have 2 things to deal with. I have yet to meet with either doctor to discuss how one treatment will affect the other. I just feel completely defeated. Not having symptoms of MS is what is making me feel hopeful despite the test results. But do I treat it? With what? What questions should I ask on Saturday?
If you have Lyme Disease, you should go through the treatment as soon as possible because, if treated early, the problems can be reversed. As long as Lyme is present, it would be quite difficult to ascertain a diagnosis of MS.
When you speak to your doctor, ask him directly if you can begin testing for MS. The testing process for MS can be tedious.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Also, there is no such thing as an MS antibody. MS is diagnosed by ruling out all other diseases, and this includes Lyme disease. Its not unheard of for someone to have Lymes and MS, but its not that common.
A spinal tap, MIGHT show Oblinocal Bands- those are pointers towards MS, but not confirming MS...also many MANY people do not have the bands, and DO have MS....see how confusing it is to diagnos?
As far as treating MS, there is no treatment. There are disease modifying drugs, all injections we give ourselves, should you decide to go that route, which is supposd to help prevent disability and progression. For me, its working (3 years now) but it isnt for everyone.
2 questions. Lyme literate Doctor? MS Specialist?
Find one of each. Do not play games iwth a regular Neuro, as they treat everything from headaches to Parkinsons Disease. Find a Neuro who specializes in MS- and make sure your Lyme doctor is what they call Lyme Literate....they need to be highly schooled in these diseaeses to both treat and identify what is going on.
Good luck to you....
Nikki
Wow! Thanks to you both. Yes, I do have a LLMD. An LLMD that came recommended to me from two people who were severely affected by Lyme. Who sware she saved their lives.
I emailed my LLMD yesterday and she replied with: Her direct quote, "Lyme and MS are not mutually exclusive. Let's meet asap to discuss treatment options risks/benefits, etc.
I do have a question though about MS. How else is it diagnosed? I thought the lumbar puncture confirmed it. In fact, the first neurologist I saw said when looking at my brain MRI, "this could be lyme or MS. Only through a lumbar puncture can we tell which one it is. "
Since his comment, I realized that I had so many of the symptoms of lyme, including the severe stiff neck pain that has lasted almost 2 years. I even went to my primary care in April '05 to test me for Lyme since I believed I had it then. Of course it came back negative. My gut is telling me that Lyme has caused this in my brain over the course of the last few years.
I know the neurologist only gave me bits of information over the phone about my MS diagnosis and that is why he wants to meet me tomorrow morning. I didn't make up that word 'antibodies for MS', is that what oligical bands are?
If you have symptoms which continue after all other diseases are excluded, then you are usually diagnosed with MS. Lyme symptoms present like MS symptoms, but Lyme is found with a blood test.
LP, MRI, VEP, etc. are tests used to exclude diseases. When a MRI shows lesions, the lesions are not necessarily from MS. Lesions can present as evidence of an infection.
The LP presents oligoclonal bands in the CSF but not in the blood serum. These bands indicate a type of immune system activity. These protein bands can give indications of a variety of diseases. This is not an absolute test for MS. In over 26 years I have never had a positive LP. Not all people with MS have a LP. Of those MS patients who have had a LP, only 85% show positive for the oligoclonal bands associated with MS. 15% are negative.
It is important to remember that no single test can validate a diagnosis of MS. The tests and tools available to the MS doctors only serve as exclusionary methods. The LP may eliminate many diseases, but you can get a diagnosis of MS without it. Before MRI's doctors were diagnosing MS. The newest tools speed-up the diagnosis time (not always!!) and allow the doctor to compile more exclusionary evidence.
You can ask your doctor or look-up online the McDonald Criteria. This is a process typically followed in the diagnosis of MS. Stay assertive and always- ALWAYS- ask questions. After 30 years of this, I still have a list of questions to ask my doctor each time I see her. Even if you get a diagnosis of MS, ask your doctor to walk you through the evidence which led to the conclusion. If you have doubts, ask!!
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MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I left that message in the Lyme forum, and I probably should apologize. It was probably a little too harsh. Out of curiosity, I sometimes read that lyme board, but I should probably stay away.
Anyway, in regard to your lumbar puncture results, the neurologist was probably referring to finding immunoglobulins (IgG) in your spinal fluid. These are antibodies, but they are not specific to MS. However, if they are found in the spinal fluid and not the blood, this means they are being produced solely in the central nervous system, and is an indicator of MS. The oligoclonal bands you hear so much about refer to this IgG production. The bands have to do with tests that detect the IgG, and the different bands refer to different proteins in the IgG. Before MRI's, the presence of the IgG was how doctors determined a diagnosis of MS (though, as mentioned, a negative result doesn't necessarily rule out MS); to this day they don't know why it is present (originally it was thought due to the presence of a virus).
If you suspect you might have neuro-lyme disease, they can test for presence of the bacteria in the spinal fluid. Tests can be run for both the antibodies and the bacteria itself (DNA PCR).
Like I said, I didn't mean to come down so hard on your neuro. He (or she) is right that catching the disease as early as possible is best. This is when the commonly prescribed medicines, disease modifying drugs (DMDs), seem to work best. But this isn't like catching a cancerous skin mole - remove and you're done. As I'm sure you're aware, there is no cure.
You mentioned some of the tests from your LLMD, such as the EBV. From what I understand, almost everyone is exposed to EBV at some point. And you will develop antibodies to it, just like most viruses. So, the fact that you show antibodies for EBV is really not that significant. Also, microplasma is a bacteria, not a virus. So, I would ask your LLMD if the anti-virals are really warranted. And your vitamin D - exactly what was your level?
Finally, you asked what questions you should ask. If it was me, I would ask the LLMD why she believes you have lyme (if that is what she thinks). The neurologist I would grill: I would ask what he sees on his neuro exam, why he suspects MS (if this is what he thinks), and, maybe, a referral to an MS expert.
Again, I apologize for the sarcasm of my last post. Hope this helps.
I just wanted to add, that early on, I did go through the lyme disease dance. And, I 'm just over the river from you in MD. If you have any questions, please feel free to PM me.
Hi Mommy, I was sorry to read about your spinal tap results, but I am SO THANKFUL that you did chose to take the test, as alot when pending a true Lyme diagnosis especially when dealing with CSF (cerebral spinal fluid), refuse such tests stating it's not failsafe, and no need for it, they have Lyme etc. I am very thankful you did follow your doctors advice and have the proper testing done in the CSF. Maybe they ran a Lyme test in the CSF, as they mimic eachother so much, and maybe you can get a better full understanding if that was negative, but, I am unsure if they did test you for that or not.
With only a 41kd in the western blot, I doubt they did check the CSF.
If you have any questions regarding anything on why regarding the Lyme end, PM me, but your neuro will explain to you much better than I ever could, and even thou it is NOT Lyme=in my eyes, it is finally a diagnosis to an extent for you to finally get some relief, as well as treatment, and thankfully very early in the phase of MS.
I think your 41kd is in reference to what showed in your 'viral load' wad of tests you had as cross reacting, but it is not a Lyme diagnosis, it is not lyme specific, and your co-infections were negative, nothing is pointing to Lyme from what I know even if you did the IGENIX test now, I don't feel you would have the result you were looking for at all, but about your condition, even if your symptoms are similar, I too had severe symptoms, that they ruled out MS on me, and I had a full Lyme diagnosis with positive CSF for Lyme, and nothing pointed to MS, no lesions or the CSF bands.
I just wanted to post you, and let you know you've crossed my mind, and if you have any questions on the Lyme end, and why it's not, I will try my best to explain it to you from experience of ruling things out with tests. Again I'm sorry that your stuck between both of the doctors, but the LLMD may treat the viral load end as they called it, or possibly you can bring the results to show the neuro, and possibly get tx for both on your insurance. I wish you the best in your treatment, and will answer anything I can if you have questions.
With only a 41kd in the western blot, I doubt they did check the CSF.
I think your 41kd is in reference to what showed in your 'viral load' wad of tests you had as cross reacting, but it is not a Lyme diagnosis, it is not lyme specific, and your co-infections were negative, nothing is pointing to Lyme from what I know even if you did the IGENIX test now, I don't feel you would have the result you were looking for at all, but about your condition, even if your symptoms are similar, I too had severe symptoms, that they ruled out MS on me, and I had a full Lyme diagnosis with positive CSF for Lyme, and nothing pointed to MS, no lesions or the CSF bands.
I am confused. What are you talking about in this 41kd? I have no idea what that means.
Thanks again to those who are here to try and help. I will meet with the neuro Saturday morning and I will update everyone.
Here are some specifics:
My lyme test was equivocal. I won't go into the controversies on getting a Lyme diagnosis here. That isn't why I am here. I have many symptoms of Lyme. I suspected it in 2005. Bit by a deer tick. Dogs have died from Lyme in my neighborhood and several people in my neighborhood have Lyme. That is a high rate for a neighborhood of only 50 homes. I have herds/packs of deer in my yard on a daily basis two-three times per day. But enough of that...
I have no physcial symptoms of MS.
Here are some lab results that I have had up till now for those who are curious about my virus and bacterial load:
Bacterial Infection: Micoplasma pneumoniae IgG
Positive is >320 My result was 1810. Flag- HIGH
The IGM result was negative
HSV: IgM I/II Positive: >1.09
My result 1.31 Flag- HIGH
HSV Type 1 IgG Positive >1.09
My result 3.08 Flag- HIGH
EBV IgG Positive >120
My result 1024 Flag: HIGH
Vitamin D Normal is 32-100
My result 22.6 Flag: LOW
My hormones many of them are in a very low range and were flagged.
I'm so sorry, even though we talked about the spinal taps and the lyme I thought that was you, never the less, you were the one that was on my mind, I rechecked the lyme board for your handle to be sure. Sorry for bothering you. Nevermind.
Hey Funnymommy. You are certainly having allot thrown at you, arent you? As I had stated and as Jayhawk confirmed, MS is a disease of ruling out everything else. While certain antibodies present for Lyme and most other diseases, NOTHING is measured for MS- certainly there arent any antibodies present in any tests (LP or blood) and therefore, if you are not showing lesions, not showing symtoms, MS is probably not in your future for a diagnosis, at least not at this time.
The fact that you have a LLMD for your Lyme testing is a good thing! If anyone can confirm or rule out LYme, its him. Are they sending the tests to Igenex in California by chance? If they are NOT- then please read up on this lab and suggest doing so. Most of us have gone thru ruling out LYme, and all of us concur, IgeneX is the place to rule it out, or have it confirmed.
Wishing the best of the best to you....at least with Lyme, you can do the protocol and get on with your life..
Hugs
Nikki
no symptoms of MS, except for lesions discovered in my brain and one in my spinal cord. (An Mri was done because of a severe stiff painful neck.) I had a lumbar puncture and according to the neurologist who called me today MS antibodies were detected.
Hello, funnymommy.
Based on lesions in both the brain and spine and from my understanding a positive LP it sounds like MS is a very real possibility.
Strange as it may sound there have been those diagnosed through testing who do not show any symptoms.
Let us know what your neuro thinks.
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Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression
NOTHING is measured for MS- certainly there arent any antibodies present in any tests (LP or blood)
This is not correct. The presence of immunoglobulin in the spinal fluid is used in diagnosing MS.
Quote:
Are they sending the tests to Igenex in California by chance? If they are NOT- then please read up on this lab and suggest doing so. Most of us have gone thru ruling out LYme, and all of us concur, IgeneX is the place to rule it out, or have it confirmed.
Positive spinal taps are indicative of an immunological response but they are not diagnostic for a particular condition. Of MS patients who choose to have a LP, only 85% have a positive result. 15% have a negative result. I have never had a positive result.
The positive result shows that there is an immunological condition occurring, but the LP is only one exclusionary tool used by doctors to help them determine a diagnosis.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Yes, we are using IGENEX lab. My result isn't back yet. My LLMD and Dr. Burscanno have even said that even if IGENEX result comes back negative they have had MANY patients after undergoing treatment for LYME come back positive have several weeks of antibiotics.
I don't want to start an out and out debate on this board. That wasn't my intention. I have learned a lot from everyone's postings. A lot. Mainly how controversial getting a diagnosis on either of these things is. It clearly states on my lab work from the LP that an MS diagnosis should be based on clinical findings as well.
I met with the neurologist Saturday morning. He discussed 4 medications with me. He wants me to research each and come to a decision on moving forward with treatment.
Here is what I plan to do: I have already begun treatment for Lyme. I am meeting with the MAIN LLMD April 21st. Up until now I have seen her colleagues who are LLMD's as well. I cannot wait until the 21st to run all of this by her. Who knows we may treat both simultaneaously.
I will definitely keep everyone posted.
Thank you so much for your support. There are no hard feelings here at all.... We are all in this together learning. Who knows maybe you all will learn from my experience, too!
I must say, you are really blessed!! A Saturday appointment! I should be so lucky.
I am glad you are getting the assistance you need. I do not do meds, but there is medication for Lyme. My personal- non-medical, DMD free opinion- thought is that you should seek the Lyme treatment first and then if and only if you get a definite diagnosis of MS, you decide upon how to treat the MS.
In the end, whatever decision you make, it should be what is right for you and you alone. Whatever the decision, rest assured that I got your back and I believe many others here will have your back too. I still have you in my prayers!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
