Anybody have a previous Lyme misdiagnosis?

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Tick41
Regular Member


Date Joined Feb 2016
Total Posts : 309
   Posted 11/16/2016 10:07 AM (GMT -7)   
I've had a Lyme diagnosis based on symptoms but I recently had an MRI Friday morning and I'm still awaiting results.
Symptoms: on and off fatigue
Excessive brain fog/concentration issues After mental exertion
Muscle twitches/ripples all over my body
Some muscle aches and weakness
Anxiety issues

A couple of questions: has anybody had a previous misdiagnosis of Lyme before getting diagnosed with MS
- also for those diagnosed with MS how long did MRI results take?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 11/16/2016 6:15 PM (GMT -7)   
I'm sure it's possible. I've heard more incidents of the other way around; Lyme being misdiagnosed as MS. I get MRI results in 3-5 days. Even if you have lesions detected by the MRI, you may not get a diagnosis of MS. Your Lyme disease diagnosis will complicate things. MS is a diagnosis of exclusion. All other possible reasons for your symptoms have to be ruled out.

What makes you doubt your Lyme disease diagnosis ? What leads you to consider MS?
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 Today 10:52 PM (GMT -7)   
What is/was your treatment plan for lyme?

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 12/17/2016 7:41 PM (GMT -7)   
My LLMD has said that I may have MS caused by Lyme. I have positive Lyme tests and I responded immediately to antibiotics during my initial diagnosis and recently during my recurrence because I stupidly went of antibiotics for a few years. I also had bells palsy many years ago which my LLMD said is a sure indication of Lyme.
DX w/ Lyme, Babs, Bart in Sept '09. On IV abx Nov '09 until Mar '09. Orals for a few months and I felt great so I just stopped. In Apr '16, things suddenly went awry... my ability to walk was affected, double-vision, it hurt to touch my bare belly with my bare fingers, but no problem touching through fabric. Started three oral abx in Apr 2016. New problems in Dec 2016. Back to 4 abx Dec '16.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 226
   Posted 12/18/2016 5:49 PM (GMT -7)   
mokeyho said...
My LLMD has said that I may have MS caused by Lyme. I have positive Lyme tests and I responded immediately to antibiotics during my initial diagnosis and recently during my recurrence because I stupidly went of antibiotics for a few years. I also had bells palsy many years ago which my LLMD said is a sure indication of Lyme.


Lyme disease does not cause Multiple Sclerosis. Lyme disease can cause delayed Neurological symptoms that are similar to MS but is not MS.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 1/8/2017 8:21 AM (GMT -7)   
How do we know that for certain though Snoopy? As a person who has been diagnosed with both, I can assure everyone that I sure as heck didn't have ANY problems prior to my tick bite.

My LLMD believes that bacteria and biofilm caused from Lyme & co-infections have a significant role and impact on MS. Lyme is also associated with atherosclerosis of the carotid artery....and now we could start and Dr Zamboni's theories.

https://www.lymedisease.org/unh-research-confirms-lyme-disease-bacteria-biofilm-in-human-body/

http://justlivinglikethiswithlyme.com/2014/09/23/blood-flow-brain-issues-lyme-ccsvi/

No one knows the etiology of MS. Personally, I think the possibilities could be infinite, but for some, the treatment of Lyme has subdued their MS symptoms and has even reversed the debilitating effects.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 226
   Posted 1/8/2017 9:18 AM (GMT -7)   
From The National Multiple Sclerosis Society:
http://www.nationalmssociety.org/Symptoms-Diagnosis/Other-Conditions-to-Rule-Out/Lyme-Disease

Dr. Zamboni's Theory:
http://www.nationalmssociety.org/Research/Research-News-Progress/Research-News/CCSVI
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 1/8/2017 10:39 AM (GMT -7)   
There are many papers supporting Dr Zamboni's research.

Personally, anything being published by a foundation that receives 90% of its funding from pharmaceutical companies that have a vested interest in current MS treatments, I'll take worth a grain of salt.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 1/8/2017 4:49 PM (GMT -7)   
I remember when CCSVI first broke in the news. I was so excited and hopeful! And yet after waiting and reading and reading and reading I've not seen anything that would make me seek this treatment. I've read a small handful of andecdotals but I've read many more accounts of people who had the treatment and didn't receive any benefit from it.

I'm not sure where you got your information on the MS society but I'm not seeing that information anywhere. Non-profit fundraising and the subsequent usage is all public information. The MS society does receive donations from pharmaceutical companies. Pharmaceutical donations amount to less than 5%.
Diagnosed with MS July 2006

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

Post Edited (Gretchen1) : 1/8/2017 5:02:29 PM (GMT-7)

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