Has anyone else ever been diagnosed with MS before their Lyme diagnosis. Because my standard Lyme tests were negative they told me it was MS, now I'm unsure just what I'm fighting with.
Posted by steve1906 (Member # 16206) on :
Lyme disease is usually diagnosed based on symptoms, some will test positive, and some never will.
In the beginning I had neurological Lyme disease and is often characterized by white matter lesions in the brain resembling those found in MS patients. I had the white matter and they 1st. said MS – then changed it and said it was aging – not uncommon when it comes to Lyme.
Do some research online; you can start with this web-site below.
1. There is no definitive test for MS. 2. Most "standard" Lyme tests will not find the Lyme.
So.. get a test from a better lab such as Igenex and find an LLMD who can better evaluate you. You don't want to go to a Dr who knows little to nothing about Lyme (that would be 95% of doctors.)
So find a DR who sees it every day and knows how to treat it.
i have been down that road but i am so much better now you must watch this video http://youtu.be/s3_JwDPqGAg
the women in this story matches me and many others who were misdiagnosed as ms, Lyme causes brain lesions so listen to your spirit, your MS will only get worse without a good lyme doctor you can stop it like i did with a good plan
Posted by Keebler (Member # 12673) on :
- Indeed, as others have replied, many were first misdiagnosed as having MS (or other neurological conditions such as ALS or Parkinson's, even Alzheimer's) until they finally consulted a true lyme expert, someone ILADS educated.
Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities. -
Posted by Keebler (Member # 12673) on :
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
How just doxycycline (or other antibiotics, alone) can cause chronic lyme:
Topic: replication within cystic forms of lyme -
Posted by Keebler (Member # 12673) on :
- Check all your labels, for everything that goes into your mouth (or even onto your lips). Some of these can cause all kinds of neurological issues (with or without lyme in the mix):
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all);
GMO foods that destroy the GI Tract; Gluten; Dairy.
-----------------------
And remember that success is possible. Many have succeeded. It may be a rough ride at times but many have gotten better. -
Posted by Judie (Member # 38323) on :
Thanks for posting this. My old link for it didn't work and I've been looking for it for awhile: Ticked http://youtu.be/s3_JwDPqGAg Posted by Carmen (Member # 42391) on :
quote:Originally posted by steve1906:
In the beginning I had neurological Lyme disease and is often characterized by white matter lesions in the brain resembling those found in MS patients. I had the white matter and they 1st. said MS – then changed it and said it was aging – not uncommon when it comes to Lyme... Steve
After my first tick bite for which I was treated with doxy for 20 days for flu like symptoms... some months after that due an fall injury I was taking tramadol which caused a seizure. I had an MRI done in ER and the doc said there were numerous leasions in my brain that they had no name for.. said it was probably age related. Ive been fine since then until this past Oct, over 4 years, but I was bit again this past spring. I think my cognitive functions are OK.
Posted by Keebler (Member # 12673) on :
- The white matter lesions on my brain MRI were also declared to be "age related" - nevermind that I was very, very ill.
They did say they highly suspected MS (due to all the neurological symptoms) but there would be nothing they could do about it other than steroids (which I refused, I knew that much as to avoid steroids, at least!) . . . and I refused a spinal tap (lumbar puncture) so they just angrily sent me on my way to "get a life." Because I refused that, they thought I could not be seriously ill or I'd would have done whatever they said.
I knew that test could not tell me anything I did not already know and that it could be very painful and expensive.
Years later when I learned about lyme possibility after decades of illness, finally, Igenex lyme test was positive . . . 2 other TBD and 2 other chronic stealth infections were diagnosed with other doctors. -
Posted by Carmen (Member # 42391) on :
yep, Im thinking they were thinking that they were looking at an early Alzheimer's case.
Posted by steve1906 (Member # 16206) on :
Carmen, I know I was bitten at least twice; ( maybe many more?) Both times caused me big time neurological symptoms.
I thought I was going mad, crazy etc. (for 2-3 years) - you know the feeling, when the bugs get in your brain, they take over your entire body.
I’ve read many times, neurologist often call the white matter MS, then call it aging. I guess if they’re not sure aging is our best bet. I hated my neurologist, wouldn’t listen, didn’t believe anything I said, and just plain didn’t care about anything I talked to her about, rude, rude, rude….
I only had one brain MRI, years ago, maybe someday I’ll do another.
How are you doing since your last Oct Bit?
Steve
Posted by steve1906 (Member # 16206) on :
By the way, I asked her (neurologist) if The white matter could be Lyme, she said No No No.
I know, I should have seen a LLMD on the readings.
Also, it's funny I tested positive shortly after that at a local blood bank (CDC pos)
Steve
Posted by Carmen (Member # 42391) on :
She has no way to know what it is just from an MRI. She's just a parrot.
Posted by steve1906 (Member # 16206) on :
At the time when I had the brain MRI, (in the beginning), I had well over 20 other symptoms.
She wouldn’t take the time to consider all other possibilities.
I’m just trying to give some insight to our new members, and what they might except from most non-LLMD’s.