Lyme Disease... MS?

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JessicaMommy
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Date Joined May 2015
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   Posted 5/23/2015 4:59 PM (GMT -6)   
Hey Guys,

I just have a couple questions I'm hoping you can answer. I was wondering If any of you have received a faint positive Lyme Disease test however it was positive because of MS?

My Lyme Disease results are:

My Lyme IgG-IgM EIA (ELISA) was Reactive
My Lyme IgG Western Blot was Non- Reactive
My Lyme IgM Western Blot was Weakly Reactive

The Mayo Clinic website states:
Diagnosing Lyme disease

IgM assay is useful for confirming stage 1 (acute) Lyme disease. (My IgM was Weakly Reactive and my symptoms have been for 5 1/2 years so this should indicate my symptoms would not be from Lyme disease as this tests positive for NEW infection.)

IgG assay is useful for confirming stage 2 and stage 3 Lyme disease. (mine was negative and my symptoms have been 5 1/2 years so this should of been positive according to Mayo Clinic and CDC if I've had Lyme Disease for a long time like months/years)

Mayo Clinic also states:
False-positive reactions may occur with patients with other spirochetal diseases (syphilis, yaws, pinta, relapsing fever, or leptospirosis), influenza, autoimmune disorders, multiple sclerosis, or amyotrophic lateral sclerosis.


So because false positive Lyme Disease results happen with people with ms, and given mine was only faintly reactive for NEW Lyme disease infection and non reactive for LATE Lyme disease infection.... im skeptical.

What I'm getting at is my doctor is suspicious of MS. I'm doing a balance test next week (ENG). She thinks this would also help rule out inner ear problems causing my symptoms and she thinks this would help the neurologist determine MS. Did an ENG Balance test help in your diagnoses?
My doctor has started me on antibiotics to treat lyme but she wrote on the report since Lyme disease often effects large Joints (i dont have this symptom) and the nervous system she thinks doing the balance test (ENG) would be beneficial to the neurologist to help determine if my symptoms are from something else like MS or to confirm Lyme Disease.

My symptoms are off balance, light headed all the time, a lot of the time its hard to stand. Sometimes feels like I'm on a boat. Sometimes I feel faint. Grocery stores make it worse and isles. Its been 5 1/2 year with this now. And just over a year ago I started developing tingling all the way up my spine, and it happens often now. I have poor circulation/numbness in my fingers and I'm always tired.

I have had 3 MRIs over the last 5 years which have been normal however my last MRI showed white matter spots at the front of my brain.

Whether its Lyme Disease or MS, or something else... I just want to figure it out! And it looks like I'm getting somewhere finally. Its been so long with no answers :( I'm just trying to make sure I get the right diagnoses so I can be treated appropriately and help myself for me and my kids.

Any input?

Sorry for the long novel.

ETA : More of what is confusing to me is what the CDC has on their website. This is exactly my situation, I've been having symptoms for 5 1/2 years but my IgG is negative and my IgM is only faintly positive.

CDC website says :

I have been sick for a few years with joint and muscle pain, fatigue, and difficulty thinking. I was tested for Lyme disease using a Western Blot test. The “IgM” Western Blot test was positive but the “IgG” Western Blot test was negative. Is Lyme disease the cause of my symptoms?

Answer: Probably not. First, you should only have an immunoblot (such as an FDA-approved Western Blot or striped blot) test done if your blood has already been tested and found reactive with an EIA or IFA.

Second, the IgM Western Blot test result is only meaningful during the first four weeks of illness. If you have been infected for longer than 4 to 6 weeks and the IgG Western Blot is still negative, it is highly likely that the IgM result is incorrect (e.g., a false positive). This does not mean that you are not ill, but it does suggest that the cause of illness is something other than the Lyme disease bacterium. For more information, see the in-depth discussion regarding testing for Lyme disease.
http://www.cdc.gov/lyme/faq/

Why does this all have to be so confusing confused Lyme Disease? MS? Something Else

Post Edited (JessicaMommy) : 5/23/2015 6:07:12 PM (GMT-6)


Gretchen1
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Date Joined Jan 2007
Total Posts : 3565
   Posted 5/23/2015 9:32 PM (GMT -6)   
Hi Jessicamommy!

Welcome to the board. I'm sorry you are sick! 5+ years is a very long time to be sick!!! Hopefully you'll get some answers real soon.

So brain lesions are tiny spots of damage. They can be caused by many things: infection, migraines, MS, stoke etc. So as an infection, Lyme disease can cause brain lesions. Your blood work seems to indicate Lyme. You need to take that seriously and make sure you learn as much as you can about Lyme disease.

On the other hand, your symptoms sound like mine. I was diagnosed after a 3 week episode of vertigo. I ended up in the hospital because I couldn't walk unassisted. A brain MRI showed lesions. It took 5 more weeks but was eventually diagnosed. Your descriptions of grocery stores and boats.....I know these.

The problem lies in the use of steroids. Steroids are often used in MS. STRONG IV steroids. This could be devastating to a body trying to fight Lyme.

Some feel that an infection like Lyme can trigger MS. Some feel that once Lyme is treated MS will disappear. This doesn't seem plausible since other infections can trigger MS and yet once the infection has passed, MS lingers permanently.

You will have to be your own advocate. You will need to ask lots of questions. Get second opinions if possible.

I feel like I've just babbled. I hope this was at least a bit helfpul.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 5/23/2015 11:17 PM (GMT -6)   
Unfortunately there is no simple answers to your questions , Jessica. There are many illness' & diseases that can cause the symptoms you are describing - ms and lyme being 2 of them.

I was recently diagnosed with MS and i to have also ventured down the Lyme path. I can say this. Through my travels here is what ive found. My ELISA came back as a false positive so i had very specific Lyme testing done of my blood serum by Igenex. Certain bands came back as Indicative or positive for certain strains of bacteria that is associated to Lyme, however one needs to have 5 positive bands to be diagnosed with Lyme according to CDC guidelines - which i do not have.

As you have mentioned, people with auto immune disorders tend to set off certain positives within the Western Blot test & ELISA tests. So this leaves one in a bit of a dilemma. Because It is critical to start treatment of ms as soon as possible it puts one in quite the predicament as to what treatment path to start.

I have chosen to treat MS and here is why;

Multiple lesions have been found in/on my brain with largest measuring 20mmx21mm - Several radiologists and 4 neurologists ( 3 specializing in ms) have reviewed my mri and they all concur ms

CSF tested positive for oligoclonal banding and certain proteins that are associated with ms

Visual evoked potential suggests i have optic neuritis

Elevated absolute monocyte level

Lastly, clinical symptoms

With all that being said, i am not discrediting my Igenex test results and am currently chasing down the horse that set off the indicatives and positives. - but that is another conversation.

On Monday i am going to get my blood drawn so they can check and see if there are any o-bands in my blood serum.

You say you have started antibiotics? A good way to tell if you di have Lyme is that you're going to start to feel a whole lot worse before it gets better as the antibiotics start to do their job, killing off the bacteria which in return releases a toxin which will make you herx. Im not an expert in Lyme but my guess would be no herx = no lyme.

Here is a good site that may help you in distinguishing the differences between the two diseases.


http://asp.cumc.columbia.edu/psych/asktheexperts/ask_the_experts_inquiry.asp?SI=569

Also, head on over to the Lyme section and get Travellers attention. He is very knowledgeable about the disease.

JessicaMommy
Veteran Member


Date Joined May 2015
Total Posts : 507
   Posted 5/24/2015 5:57 AM (GMT -6)   
Gretchen - Everything you said was helpful, thank you! Thank you both. I have started antibiotics for Lyme Disease which is Doxy 100 MG x2 per day for 21 days and my doctor has referred me to Infectious Disease Doctor at the hospital. She also is still having me do the ENG next week and seeing a neurologist. I posted on the Lyme Board exactly this but I just get told I absolutely have Lyme, that my antibiotics wont help me as it is too low and short of a dose, Infectious Disease wont help me or my doctor and I need to travel to see a LLMD who can put me on long term antibiotics. Its all a bit overwhelming. I appreciate their help 100% they are very knowledgeable, im just not certain its 100% Lyme and neither is my doctor just yet - and my blood work makes me suspicious. My blood work qualifies as a false positive for Lyme Disease according to the Mayo Clinic and CDC website but over on the Lyme Board they are telling me there is no false positives. A long with that I never had the stage 1 or stage 2 signs of Lyme Disease over the years, just the balance issues from day one progressing worse over the 5 years to 247. and now for the last year tingling up my spine. I wish answers were straight forward. Im just want to know if its Lyme, MS or something else... and work at looking after me for whatever it wrong with me. Hopefully I get clear answers very soon from tests and doctors.

I started the antibiotics Thursday night and it is now Sunday am. So far I just feel the same as always. Ive heard you can herx but I believe not always.

Did and ENG help with diagnosing you for MS.

Post Edited (JessicaMommy) : 5/24/2015 6:05:32 AM (GMT-6)


JessicaMommy
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Date Joined May 2015
Total Posts : 507
   Posted 5/24/2015 6:09 AM (GMT -6)   
Chris - thank you for your response. that was what I wanted to know more about, is this: people with auto immune disorders tend to set off certain positives within the Western Blot test & ELISA tests.

Just wondering how many of you this has happened to. As my Lyme Blood test quailifies as a false positive according the Mayo Clinic and the CDC, im worried it was picked up because I have MS. Which has been a suspicion for a while now and currently having more tests to look in to it and see a neurologist.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 5/24/2015 8:14 AM (GMT -6)   
W Chris,
Thank you for posting such good information. You've quickly become a valuable source of information and support here!


JessicaMommy,

I had an ENG my first night in the hospital. It showed that my ears were not the cause of my vertigo and balance problems. I had an MRI next where a substantial lesion on my cerebellum was found. Within 5 weeks another lesions showed up on my parietal lobe and later lesions were found on my spine.

I had oligoclonal bands in my CSF but none were found in my blood. I failed an evoked potentails test in the area is vision, was found to have delayed responses for extremities and hearing was fine. I had some abnormal responses to a neurological exam of reflexes.

I started out with a hospital assigned general neurologist but was eventually referred to an MS specialist for a second opinion. My first diagnosis took 5-7 weeks (can't remember.) The second opinion along with a prescription for an MS therapy took about 2 more months. It was quick, quick for me. In that way I was lucky!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Post Edited (Gretchen1) : 5/24/2015 8:17:06 AM (GMT-6)


JessicaMommy
Veteran Member


Date Joined May 2015
Total Posts : 507
   Posted 5/24/2015 11:28 AM (GMT -6)   
Hi Gretchen did the ENG show anything wrong at all - like did it pick up some was not right with your nervous system and balance

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 5/24/2015 2:10 PM (GMT -6)   
An abnormal reading can indicate MS but it can also indicate inner ear issues. Those would need to be differentiated. Somehow (I can't quite remember how) my doctor concluded my issues were related to brain and not ears. I beleive (don't quote me) since I had no nystagmust but still very poor balance that the abnormal results indicates a brain issue. From there I was actually misdiagnosed with a cerebellar stroke. That was revoded a few weeks later.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 5/24/2015 3:56 PM (GMT -6)   
I must also point out that no single test can determine the diagnosis of MS. Take for instance just because one has o-bands in their csf doesnt necessarily mean they have ms, however it is one very important part of completing a much larger puzzle.

Also its great you are going to see see an ID specialist ( been down that road as well ) but - the big but, if you dont meet CDC requirements for lyme he/she probably wont do anything for you and if this is the case you may want to contemplate seeing an LLMD.

As far as my ENG...i cant even remember if ive had that test. To be honest, ive been poked, proded and ran through every machine at the hospital its hard to keep track lol.

And thanks for the kind words Gretchen.

JessicaMommy
Veteran Member


Date Joined May 2015
Total Posts : 507
   Posted 5/24/2015 4:44 PM (GMT -6)   
Thanks for the reply Chris!

I just feel like I should feel confident that I don't have Lyme if I do not meet CDC requirements for my blood test and the ID doctor tells me I don't have Lyme... that I actually do not. But over on the Lyme Disease Forum they are telling me the CDC is wrong, I definitely have Lyme Disease, I need to see a LLND and ID doctors are nightmares and waste of time. So basically I should not trust that I do not have Lyme if Infectious Disease tells me that. All so confusing!!! And scary. Because I want to believe the ID doctor if he tells me I don't have Lyme because my blood test is negative for not having reactive IgG, And I was only faintly reactive ImG which indicates false positive if I have been having symptoms for 5 years according to the CDC. But Im being told not to believe this. Scary dilemma I feel I am in. Something is wrong with me though... I know that much. I haven't been able to feel good walking in 5 years and im sick of it. And now I have tingling in my spine often. Ive had changes on my MRI white matter... so something is up and I pray I get to the bottom of it soon. :(

Post Edited (JessicaMommy) : 5/24/2015 4:48:21 PM (GMT-6)


JessicaMommy
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Date Joined May 2015
Total Posts : 507
   Posted 5/24/2015 4:52 PM (GMT -6)   
Shouldn't I feel confident if the ID doctor tells me I do not have Lyme, that I indeed do not - what do you think.

Im looking forward to getting a call for an appointment with a neurologist.. I have not seen one yet and have been waiting since my doctor sent the referral which is a 6-9 month wait unfortunately. Also looking forward to seeing the ID specialist to talk about all this mess.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 5/24/2015 8:15 PM (GMT -6)   
6-9 months!!!! Wow!!! That's a long time! Can you get on a cancellation list??
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 5/24/2015 8:36 PM (GMT -6)   
Well..in my neck of the woods..ID specialists know very little about Lyme and refuse to investigate further if you do not meet cdc classifications...even if you test positive for 1 or 2 strains. An LLMD has a little bit more of an open mind and will investigate further.

JessicaMommy
Veteran Member


Date Joined May 2015
Total Posts : 507
   Posted 5/25/2015 9:54 AM (GMT -6)   
Gretchen - Ya, unfortunately its along wait in Canada to be referred to anyone outside of your family doctor.

Chris - Just a question about the ENG since you've had it done before. How did you feel after the test - I heard the test can make you quite dizzy and nauseous.. did those feelings go away pretty quick once the test was finished

Sorry, my question marks are not working on my laptop right now so that it why im not using them after the end of my questions

JessicaMommy
Veteran Member


Date Joined May 2015
Total Posts : 507
   Posted 5/31/2015 7:36 AM (GMT -6)   
Well I had my ENG done last Thursday. It wasn't that bad at all. I didn't like the part when he put water in my ears and it made me extremely dizzy. He said I did pretty good on my tests and I will get the results from my ENT in a week, but they look good from what he said. He said to me he had a few Lyme patients with the same issues as me but there symptoms were more obvious to point to Lyme Disease such as sore joints and tick exposure. He also said that what he sees with Lyme disease is the patients don't respond to the last part of the test when he puts water in your ears and I did respond. But he also said that doesn't mean its not Lyme, just his experience. He also found I seemed to fit in the MS category as well because my symptoms are typical of it.

I ended up down at the ER yesterday because over the past few days my balance has gotten extremely bad. Never this bad over the last 5 and half years with my symptoms. I can barely walk and I am doing baby steps everywhere.. holding onto my husband to get to the bathroom and walk. Very light headed and feeling as if I could faint at times. Just a foggy heavy headed feeling with extremely bad balance. They checked my reflexes which were good. They asked if I have seen a neurologist yet and I told them I have a referral put it but have yet to see one. I told them my last last MRI should inflammation non-specific white matter on the front of my brain. I told them I got a positive Lyme test on my EIA then a weakly positive western blot IgM and negative IgG western blot. Explained im on medication for 3 weeks for Lyme Disease as the reason for my symptoms. They told me I may be feeling worse because of toxin die off or this might not be Lyme Disease at all and could be something else. Like MS. They said it is very possible my EIA (ELISA) and weakly positive IgM western blot was a false-positive. They sent me home saying I will be fine, nothing serious is happening with my brain like a stroke and to continue with my medication.


I feel horrible with my balance and head right now, and no one can help me. I feel so lost and scared.

I see my family doctor on Tuesday for a follow up on the Doxy Im on for 3 weeks and next steps. I think Im going to ask her for a spinal tap as I feel this is the only way I will know if I have MS or Lyme Disease.

All my symptoms are neurological so if it is caused by MS it should show in my spinal tap and if it is Lyme Disease it should also show in my spinal tap. is this right - sorry cant put a question mark my laptop is being annoying and it wont work.

Im going to ask for another MRI, however it always takes a couple months to get a call for one.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 5/31/2015 10:08 AM (GMT -6)   
I'm sorry to say this but a lumbar puncture may not help. Oligoclonal bands can indicate either MS or Lyme as well as a whole host of other diseases. The bands simply indicate that there is an immune response or immune fight going on in your brain. This can be a mistake (autoimmune such as MS or Lupus) or it can be an authentic infection such as Lyme disease, mengingitis or even HIV. The information gained from cerebral spinal fluid is helfpul in the presence of other symptoms.

Due to the fact that your symptoms have gotten worse while on antibiotics certainly points to Lyme disease. As the bacteria are killed, the die-off causes an increase in toxins. This is called a herxheimer reaction. Sometimes it's referred to as "herxing."

It's so awful that you have to wait so long for a neurology appointment or even a repeat MRI. Is there anyway to speed up the process??

I am assuming your MRI showed white matter "lesions" and not just white matter. White matter is simply a type of brain material. Everyone has white matter and gray matter in their brains.

I'm very sorry this is so frustrating. Being diagnosed can sometimes take a very long time. Especially when you have long referral wait times.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

JessicaMommy
Veteran Member


Date Joined May 2015
Total Posts : 507
   Posted 5/31/2015 12:55 PM (GMT -6)   
That is what I am thinking - im having a herx reaction. I think Lyme Disease is the more obvious answer. I hope this medicine works but everyone on the forum say it wont and that it is not a long enough course or strong enough. :( Im certainly feeling the effects though of the die off.

JessicaMommy
Veteran Member


Date Joined May 2015
Total Posts : 507
   Posted 5/31/2015 1:06 PM (GMT -6)   
Im told on the forms the only way to be treated for Late Lyme is through long term antibiotics and to see a LLMD. Doctors and CDC are wrong about the month of treatment for this - im so scared. Don't have money to go to the states and pay thousands on a LLMD and antibiotics for years, as Im a stay at home mom and we are living on my husbands income and just getting by.

The antibiotic is obviously doing something though and reaching the bacteria as I can feel it in my intensified symptoms. Now if it is a long enough of a course, that is the question.

Im trying to stay hopeful that my doctor is right, that we can cure this with a month of antibiotics. And I will improve.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 5/31/2015 1:56 PM (GMT -6)   
Indeed. It's such a tough situation to get treatment for Lyme when so many doctors don't feel that chronic Lyme doesn't exist. I'm so sorry. I hope you can get reasonable treatment and find relief.

I know that many people treat with natural and herbal remedies. The Lyme board can help with that. And please don't feel I am chasing you off. You are always welcome to post here. We are happy to support you anyway we can.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 5/31/2015 6:26 PM (GMT -6)   
Canadian eh? Im from Ontario myself. Im also surprised at the wait time to see a neuro given your symptoms.
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