Clonus?

I am sorry that means it is doing a number on your CNS. I never had clonus but developed limb apraxia that cost me my job. It is kind of like a stutter or hesitation that occurs with your dominant hand involving repetitive skilled movements.
I had a brain MRI that showed demylenating lesions that directly correlate to the way I am being affected. The differential from the radiologist was possible MS or arterial disease. They wanted to do a lumbar puncture to test for MS but I haven't done it yet, I can't pay for that.
Anyway an MRI will image the brain better than a CAT scan. Make sure that the imaging center takes as many brain slices as possible. Your referring Dr. will know what type of MRI to order, it is important so they don't miss anything.
They will most likely find something but then what? Do you change your diagnosis or keep treating for Lyme? There are going to be even more hard decisions to make. Pretty much all of the treatments for autoimmune disorders are immuno-supressive and are contraindicated in a person with an active infection. You really need to be honest with yourself about what has and hasn't worked for you in the past and don't let a biased Dr. talk you into treating one way or the other. Keep us updated and know that we are here for you.

For what it's worth, I've had both of those things, but only for a short amount of time (months). I had some pretty severe Neuro issues as well. I had a SPECT scan done and all of my symptoms at the time it was done matched up to the areas of my brain that weren't getting enough blood flow.

I even had a doctor scream at me (at the top of his lungs) that if I didn't start MS treatments immediately that I would quickly die. Now, this was NOT a MS specialist though.

Are you still in treatment for Lyme and company? Sorry, I don't really remember your details. I would encourage you to decide carefully about the treatment you choose. They don't know what causes MS and Lyme can most definitely mimic MS.

As Gregkdc said, don't let a biased doctor (or anyone else) talk you into one thing or another. Carefully evaluate all of your options, and carefully choose your path, always keeping an open mind and realizing that you have full control and can switch to another treatment when you choose to.

Let us know if we can be of any help to you.

Girlie said...
When I was concerned about MS - I had an mri of my brain...to check for lesions. Then I was sent to a neurologist. There were no lesions on the brain mri. The neurologist also did some testing...reflexes, etc. and asked me my symptoms. He also ruled out ALS at the same time.

Having said that - even if there are lesions that show up on the brain mri....that doesn't mean it is MS. Lyme can cause lesions on the brain..that can be misdiagnosed to be MS.

I wasn't told to have a lumbar puncture...I wouldn't have one even if they asked me to.

^^^Ditto everything Girlie said is what I was thinking *EXACTLY*

My sister has been diagonosed with "supposed" MS via MRI because of white matter lesions but we are in the process of trying to decipher whether its actually lyme/co's or not by trying certain antimicrobials to see if a herx reaction is produced since the testing is not very accurate. I recall a good explanation of the white matter lesions that can be caused by lyme as well just like they can with MS being on Dr J's website. I believe he says its something to do with inflammation in the brain when you have lyme and goes away when one is healed.

When I first got lyme and went to the WRONG kind of doctor (ID-doc), he wanted to do an LP on me to test for lyme and I declined. I can say if it wasnt for a lyme forum telling me to opt against it, I may have let him do it because I did not know any better back then.


-Courtney

Mister Mike said...
Trav - you ought to send that doctor a yearly Christmas card, just so he knows that you're still kicking and he was wrong ;)

I would if he was still in the area!! When I healed, that was the first thing I was going to do - WALK into his office and let him know just how wrong he was! I was even willing to pay for an office visit!! But he's moved to another state.

After abx use, and before I found the doctor that was willing to treat me for these infections, I had a doctor that was at least willing to treat my symptoms. He ordered brain MRI's and other things. I had a "significant" amount of brain lesions he said - I have it all on a CD (LOL!). He was a bit concerned with MS, but then said that I still don't quit fit in for MS - too many symptoms.

There is a lot of information online if you search for brain lesions, Lyme.

LymeyLyme - what is PEM?

Telling the difference between a Lyme flare and a herx reaction can be difficult - but if you dramatically increase your detoxing (or even stop treatments for a very short time) you should notice a drop in symptoms or symptom severity if it's a herx.

Ohhhh!! LOL! You would think I would understand what PEM is!! LOL!

I agree with your LLMD in that it comes with Lyme too!! Lots of us have it! I still deal with it with adrenal issues too.

Did you have a positive Lyme test or enough symptoms to pretty much be sure of a Lyme diagnosis? Sorry I don't remember your details, and I surely don't want to guess!

POTS can very much be a part of Lyme - I suffered with it (pretty badly too!) before I healed.

Have you had good treatment of Lyme without any or much progress?

I would encourage you to be sure to have your adrenals tested by a 3 or more saliva collection test as well.

Yep - plus with being on Doxy that long, you likely have a lot of what we used to call cystic Lyme (I think it's actually called cell wall deficient/ round body form of Lyme though):
www.townsendletter.com/July2010/sapi0710.html

In order to treat those symptoms related to Lyme though, you will need more than just Doxy to heal from Lyme.

As for the beta blockers, you might find this conversation helpful:
www.healingwell.com/community/default.aspx?f=30&m=3299589