new to the ms board

Hey Rue

Yes, u'r symptoms do sound ms-ish, but also lyme-ish....sorry. Unfortunately these two diseases mimic each other. It's VERY difficult to dx either, but given that u've had an almost dx for lyme, i'd follow that for awhile at least. Have u been on any antibiotics?? I am kinda in u'r place too...lots of symptoms and no answers...but i've been tested and retested for lyme and each time it's neg without question. I'm sorry that i can't think of any suggestions for u other than waiting and watching. That seems to be all there is u can do until whatever it is makes it'self fully known. Do try to treat the symptoms tho. There is no reason to suffer if there is a med that can help. Take care and keep asking questions. Let us know how u'r doing friend.

tory - what antibiotics are you taking for your lyme?

peaceintruth

I noticed your other posts and read a bit about you. I wish you well. Like you, I had numbness on my left side along with losing coordination in my hand (and I'm left handed). Luckily for me after a bout of steroids I returned to full function. It was my 2nd "episode" so my neuros decided it was time for MRI's which then led to my MS diagnosis.

I've heard good things about LDN from other MS'ers; personally I don't know anything about it, but I have to say I really do like hearing you're on Doxy. Interesting that you have Mycoplasma, but I'm not shocked since it's on of the many Tick Borne Diseases. Are you looking into further testing or additional antibiotic use?

best tory

Sounds like you're doing the right thing by researching and asking questions. In my case, a relative was diagnosed with MS and I just kept telling myself it had to be lyme disease. I always read how many symptoms were similar yet for myself I never investigated looking at TBD. Anyway, I scoured the internet and both of us started the CAP program then found a lyme doc, got tested and here we are both doing very well.

I do know that getting rid of lyme is very difficult, so perhaps you could still have some of the critters lingering around? There are so many strains of lyme throughout the world and then so many co-infections such as Mycoplasma, Bartonella, Babasiosis, Erhlichica, Rocky Mountain Spotted Fever and the list goes on.

My doc specifically mixes up the antibiotics -another words he treats for lyme and the co-infections. He is aware of the Vanderbilt protocol and actually spoke with Dr Stratton. He believes that Cpn is a co-infection, and does treat for that as well. I haven't had any new lesions and many of my lesions have lightened/ gone away. This after over 20 yrs of diagnosis.

My wish is that more Mino/MS studies are conducted, but my biggest wish is that testing for lyme would be re-written. Too much politics surrounds this disease, and we must get better testing and informed doctors regarding this pandemic.

Personally, just in my family alone, lyme has touched them and for years they suffered with different autoimmune diseases with no real hope of solutions. Some had Fibro, Sojgren's, IBS, Asthma, Chronic Fatigue.

I never had a reaction to the antibiotics, but I have in my past had unexplained rashes with some abx I was given for different things. Funny, I'd get these rashes..but I simply took all the abx as pescribed. I've since learned that I was reacting to the abx.

You're correct regarding the intracellular infections...they are buggers to eradicate. I think the most important thing I've learned is: No longer do I keep my immune system suppressed, I do all I can to revive it up, to help it recognize the disease and fight it. That's the key to successful lyme treatment, getting my immune system strong enough to fight this.

It's been great sharing, but perhaps you might want to ask some questions on lymenetdotorg. Lots to read there and lots of people offering their thoughts. I will do my best to share what I know, but I found reaching out, asking tons of questions was a big help to me.

tory

Great question you ask, I too asked the same over and over. When I decided to get tested I figured my body would give me answers. In fact it did. I had past symptoms return although not nearly as severe and eventually went away. Things like numbness, trigeminal neuralgia, Lhermitte's. I've had a numb left foot for years and that's now resolved. It appears as if you too are bringing symptoms to the surface.
So, was I misdiagnosed? are they one and the same? How am I to answer that. I have my own opinions so I find if there is one person who can find some answers and posting my story offers them options it's well worth it.

I must admit your doc has a lot of nerve insisting he does things his way. Who doc is sick? I'll never understand the extent of some docs egos. I have however talked to more than one MS'er that have similar stories as yours. I don't understand their limited scope. There's a lyme doc in the Pacific Northwest that says he has yet to treat a MS patient that doesn't have lyme disease, go figure.

Here's a few more places to visit: iladsdotorg publichealthalertdotorg canlymedotcom.

Peace and Good Health to you as well.

Rae,

Have you had a cervical MRI? It sounds like some of your symptoms would more likely show up as a spinal lesion rather than a brain lesion. Even dizziness and balance problems can be linked to swelling in the spinal cord. My brain MRI came out clean but the cervical MRI showed a big lesion in my neck and swelling in my spinal cord. That won't sort out the MS/Lyme question but it may help you figure out what's causing your symptoms.

Also - have you had your Vitamin B-12 level checked? A B-12 deficiency can cause all the symptoms that you're having. Make sure your dr. knows the protocol for testing. There are three tests that need to be done to ensure a correct diagnosis. Some drs. will just give you an injection of B-12 to see if your symptoms temporarily improve but that doesn't give an accurate reading of where you're levels are.

Hope you get an accurate diagnosis soon so you can move on and do what needs to be done.