Saw llmd today - non contrast brain scan indicates multiple multiple whits spots. Elisa was negative.
He says that and the ilitis of last week indicates ms and is referring me to neurologist. He did give me clarithomycyn 1000 mg day for the next six weeks.
Also have blood disorder Monoclonal Gammopathy
This is so overwhelming anyone have any input please.
regards maps
Posted by TO LIFE (Member # 12371) on :
Hi Maps,
For what it's worth, this is the way I see it. Your immune system was supposed to be protected, it's the Docs job to find out what got in their.
Hang in their, and chin up.
Posted by maps (Member # 19758) on :
Thank for the link, not that this brain understood it all, you must be much more medical literate than I, but I can see your point.
Going to get an appointment with cfs doc for next week she only treats patients with chronic illness and I would say that fifty percent of her patients have ms. Have been seeing her for four years and surely she would have recognized any symptoms of ms.
Had half my nights sleep so shock is wearing off, now hopefully going to get the other half.
Chins up, and holding on to my blankie
regards maps
Posted by pryorka (Member # 13649) on :
An llmd would never order an elisa. This doesn't sound like a lyme literate doctor you were seeing. And 90% of MS cases are either lyme, heavy metal poisoning, or one other cause i can't remember. And then you have to figure that other 10% is probably other infections or toxins we haven't noticed yet.
It sounds like you need to see an actual LLMD because that doctor you saw clearly wasn't one.
Posted by Peedie (Member # 15355) on :
Agree with pryorka.
Maybe you should seek out a known LLMD - even if you need to travel. Get a second opinion and consultation.
Were you ever tested for Heavy Metals? Can you post your WB result?
I think the other doctor may be leading you away from Lyme treatment too soon. Please check it out thoroughly, that you will be convinced it is not Lyme.
Best wishes to you. -peedie
Posted by 22dreams (Member # 17846) on :
I heard a doctor speak recently. Up until 10 years ago, his specialty was treating MS, CFS, Fibro..... until he had his first recognizable lyme patient walk through his door.
After that, he identified, like pryorka stated, that about 85-90% of his MS patients had lyme as the causitive agent.
Treat the lyme, relieve the symptoms unless irreversible damage has been done.
Ilitis is also a lyme suspect.
Again, like pryorka said, your doctor was looking to the Elisa so it definitely sounds like they're not a LLMD.
Get all the tests you can, see neurologists and otherwise, sure. Knowledge is power. But never forget that lyme mascerades as so many illnesses. With only a 46% accuracy in lyme testing, it's like flipping a coin with your life.
Posted by maps (Member # 19758) on :
Thanks for the replies.
Have been on MS sites and am starting to settle down a little. Neuro appointment is scheduled for October 6th, so that is good.
I found the doctor through this site, he is an infectious disease specialist along with another specialty i cant remember.
I like him very much and is by far the most professional detailed doctor I have seen in years.
In thinking about it I think he is doing exactly what he should be doing to stay out of the lyme headlights. If you have a patient with white matter disease the next step is to send them to a neurologist.
If he did not do that I think he would leave himself open, plus it will give him more information.
I don't feel he is leading my away from lyme as he gave me the perscription for Biaxin and I have to say I am herxing rather badly.
He also gave me requisitions for blood tests to be done which again include lyme.
I have been to a website called patientslikeme and visited the MS board. They are very aware that thier diagnosis of MS could also be lyme many there have tested positve for lyme.
I did not ask for the results of my blood tests and heavy metals was ruled out a few years ago.
Now that I have had time to think about it and talk on the MS board I know I have lyme and the herxing is confirming this:)
Thank you so much for your interest and support.
regards maps
Posted by IckyTicky (Member # 21466) on :
Great that he at least is giving you abx for 6 weeks. That says something....
I have MS symptoms as well, and my old neuro almost dxed me with it except when he got my MRI reports back he was expecting my brain and spine to be full of lesions because of all my MS symptoms.
When I came back with only one lesion he dismissed me entirely, even though he had previously been very concerned with my hyperreflexia, clonus, heat intolerance, tingling and L'Hermittes Sign (which is almost exclusive to "MS") He had been SO sure that I had MS.
I then did my own research with brought me to an LLMD and I came back pos. for chronic Lyme. I do think I have "MS" but I think MS is chronic Lyme wrecking havoc that gives you certain "MS" symptoms. My symptoms have gotten a lot better after a year so far of abx treatment.
The Ileitis is an intestinal thing like Crohns disease right? You might want to get a book called "The Maker's Diet". A man who was cured of Crohns disease with diet. Posted by bettyg (Member # 6147) on :
maps stopping by to give you moral support my friend.
please send me a PM and give me the full name and city/state of llmd you are seeing ok thx.
Posted by Dekrator48 (Member # 18239) on :
maps,
Hi! I actually missed this post earlier.
Here is a link discussing how lyme can mimic MS on pages 48-50...
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
stopping by to give you moral support my friend.