Lyme reactive bands - MS bands and brain lesions

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dreamwalker
New Member


Date Joined Feb 2018
Total Posts : 2
   Posted 2/6/2018 10:45 AM (GMT -6)   
My son and I both had a bullseye rash back in the early 90's after tick bites. They were slightly raised the ring that is and seemed to get bigger and rounder but got lighter as it got bigger until it eventually disappeared so we did not think much of it. In 2004 I had a Lyme western blot performed and tested reactive on two IgM bands and 1 igg. I have tested consistently reactive since 2004 to bands Lyme 23 kd IgM Lyme 41 kd igg reactive with test results coming back as equivocal every time. The most recent test showed B BURGDORFERI IGG&IGM my result 0.96 ()
REFERENCE RANGE: <=0.90

INTERPRETIVE CRITERIA:
<= 0.90 NEGATIVE
0.91-1.09 EQUIVOCAL
>= 1.10 POSITIVE

The use of purified VlsE-1 and PepC10 antigens in this assay provides improved specificity compared
to assays that utilize whole cell lysates of B. burgdorferi, the causative agent of Lyme disease, and slightly better sensitivity compared to the C6 antibody assay.

I have also had a lumbar puncture performed which showed I had 5 or more oligoclonal bands present in my spinal fluid that corresponded with the blood test.

My most recent MRI shows HISTORY: Multiple sclerosis

COMPARISON STUDIES: MRI of the brain October 30, 2015

TECHNIQUE: T1 sagittal and axial, flair axial, T2 axial and coronal, gradient echo and diffusion-weighted axial images are performed. Gadolinium-enhanced T1-weighted axial sagittal and coronal images are performed

FINDINGS:

SKULL BASE: There is a large mucus retention cyst within the sphenoid sinus

EXTRA-AXIAL SPACES: There are no extra-axial masses or fluid collections noted.

SUBARACHNOID SPACES: There is no subarachnoid blood visualized. The basilar cisterns are symmetric.

VENTRICULAR SYSTEM: Normal in appearance without evidence of hydrocephalus or midline shift.

BRAINSTEM AND CRANIAL NERVES: Normal in appearance.

CEREBELLUM: Normal in appearance.

BASAL GANGLIA: Normal in appearance.

THE CEREBRAL HEMISPHERES: In comparison to previous brain MRI of October 30, 2015 several new FLAIR hyperintensities are present consistent with MS plaques. These include plaques within the subcortical left frontal lobe the left external capsule, the
deep white matter of the left frontal and parietal lobes and at least 2 new plaques involving the left pericallosal white matter. There are no areas of abnormal contrast enhancement or restricted diffusion seen. There is no evidence of an acute infarct,
mass lesion, or intraparenchymal hemorrhage.

PITUITARY GLAND: Normal in appearance.

CEREBRAL VESSELS:There are appropriate flow voids present within the major intracranial vessels.

I have seen a CDC Doctor back in 2004 that told me I did not test positive for Lyme since not enough bands present. I am currently undergoing MS treatments that wipe out the immune system Abagio.

I live in Idaho and Lyme is really not recognized or treated here although we live in the desert.

No one will treat it I have had more than a dozen tests and the results are always the same for Lyme 23 and 41 reactive plus one other from time to time. However, my spinal fluid test for Lyme was negative in 2009 when they found the MS bands.

What are the chances that these bands represent MS or that the MS plaques or CSF bands actually represent Lyme or could they both represent a completely different parasite or condition? Any suggestions on a doctor to evaluate it in Southern Idaho?

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/6/2018 10:58 AM (GMT -6)   
Hi Dreamwalker,
While I'm sorry you have a need to be here, I'm glad you found and joined our community!

If you haven't yet, please do read the "New to Lyme" thread, as it's packed full of helpful information.

I actually got Lyme in northern Idaho for the first time, at the age of 7 - along with a whole host of other infections.

A CDC doctor is not who you need to see, you need to see what is known as a LLMD - Lyme Literate MD. We keep their names private because their views (backed by good,accurate science) are very different from that of the IDSA (Infectious Disease doctors) and that of the CDC views (which is 'cherry picked' information, not accurate) and so, the LLMD's are being persecuted and brought up on trumped up charges in order to hamper or close their practices. It's a real mess out there!!!

​​​​​​​​​​​​​​​​​​​For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will​​​​​​​​​​​​​​​​​​ need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​​​​​​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​You ​​​​​​ ​​​​​​​​​​​​can send me or Girlie an email by clicking on the screen name or the small blue envelope under the screen name. We may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​​​​​​​You can start a new thread titled something like "Looking for LLMD in the ​​(insert the nearest larger city & state)​​ ​​area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

​ ​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​​Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​

​​ ​​​​​​​​​​​​​​​​​​​​​​Y​​ou can email ​​​​the​​ ​​​​​​Tick-Borne Disease Alliance at​: medicalinfo@tbdalliance.org
​​

​​ ​​​​​​​​​​ILADS has their own referral system as well:
​​​​​​​​​​​​​​​​ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme.

Now, as far as your tests that you have already had, Band 23 is very specific for Lyme (Borrelia), and nothing else will turn that band positive, so there's no doubt that you have Lyme, and if your symptoms line up with Lyme symptoms, then there's little doubt that you need treatment.

I've had the misdiagnosis of MS due to my symptoms and brain MRI's as well - but don't be fooled. That Band 23 is what makes the difference, and it's really quite common to have several misdiagnoses before finally getting the Lyme diagnoses - and there may be other infections that were passed at the same time as the Lyme infection was, as this is the most common thing seen.

Keep reading, keep asking questions!!! We are here to help as best as we can!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Dahlias
Veteran Member


Date Joined Jun 2017
Total Posts : 518
   Posted 2/6/2018 10:58 AM (GMT -6)   
Hi and welcome! Band 23 is specific only to Lyme. You'll need to see a Lyme-literate doctor. I would suggest creating another thread with a title like "Seeking LLMD in southern Idaho" so people in that region will have a better chance of seeing it. In the meantime, check out the pinned thread for new members -- it has lots of great info. Wishing you health!

ETA: Oops, cross-posted with Traveler! smile

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/6/2018 11:01 AM (GMT -6)   
It's all good, Dahlias!!! We were both just trying to welcome a new member, and that's a good thing!!! smile
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

dreamwalker
New Member


Date Joined Feb 2018
Total Posts : 2
   Posted 2/6/2018 9:48 PM (GMT -6)   
I was wheelchair bound fifteen years ago and had to walk with a cane for years told it was from M.S. but had the equivocal tests way before MS diagnosis. I am currently taking a new medication for the MS brain lesions that I have always questioned whether it is truly MS since I had allergic reactions to all other treatments. It is teriflnomide Aubagio I am currently taking - it wipes out the immune system and rebuilds it. Should I be taking this in the event I do not have MS and it is all Lyme as I have thought for almost 20 years? I have updated my profile as requested thank you. I was surprised to get a response at all so thank you.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 2/7/2018 10:58 AM (GMT -6)   

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2547
   Posted 2/7/2018 11:32 AM (GMT -6)   
Can I ask how you feel with MS treatment? Does it help or are you getting worse?

It sounds like your gut is telling you to question diagnosis. Have you ever had treatment for lyme disease? If so, how did you feel?

I have not read up on this drug. So it wipes it out but rebuilds? If it rebuilds then I'd be curious if it could actually have some kind of a positive effect with lyme. Almost like a "reset" button.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/7/2018 1:35 PM (GMT -6)   
I'd be asking the same questions as K07.

As far as the med you are on, I did a little bit of looking into it, and it looks like that it's two meds combined into one - one lowers the immune function if they other isn't taken - not that it wipes it out and then rebuilds it - or at least that's what I understood from reading these two articles:
/www.drugs.com/pro/aubagio.html

/www.ncbi.nlm.nih.gov/pmc/articles/PMC4206621/

But, we know you have Lyme, as you had a positive on Band 23, which is highly specific for Lyme disease. So I would encourage you to look into it as if you have Lyme which progressed into a MS like illness. This is actually not at all uncommon. I was diagnosed with MS myself, although I knew I didn't really fit that diagnosis, so I never agreed to start treatments.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
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