MS or Lyme? Plz help

Hello everybody,
my problems started in Dec 2010 when I had a flu for about 2 months. Immunologist did some test, mycoplasma, chlamydia and lyme was positive (IgM and IgG Elisa). I was on ABX for 3 weeks (doxycycline) and I felt better little bit. In May strange symptoms occured - paresthesia all over the body (hypersensitive skin, burning spots), after two months I had double vision and fingers numbness, paresthezia, fatigue, little joint pain, tinnitus etc.. (generally neurological symptoms). I bought minocycline myself and after 3 weeks on it neurological symptoms were even worse so I ended treatment. I was scared that I have MS, neurologist did lumbal punction (Lyme Elisa negative, 0 o-bands), VEP normal, MRI normal, blood tests - Lyme Elisa IgM marginal, IgG negative, Blot only one IgM antigen positive (OspC), PCR negative, bartonella quintana IgG positive. He said I'm hypochondriac. My LLMD told me it could be lyme and I'm on minocycline+azi+plaquenil for 4 weeks now and no improvement (neurological symptoms are worsening again).

Here's my MRI:

http://imageshack.us/f/528/vstiekp.jpg/
http://imageshack.us/f/16/vstiek2l.jpg/

I can see little white spot on right hemisphere. Im going to see MS specialist in January for second opinion. Im pretty scared it could be MS after all. Is here anyone with Lyme with same symptoms/test results? Thanks for any advice/opinion.

Im very impatient in my treatment, when can I expect improvment? My LLMD isn't sure about lyme (my results are not so clear) he put me on ABX just to be sure. This uncertainty is killing me.

James - I am and was very impatient with my treatment too - believe me when I say that such an attitude will make things WORSE. You have to look at your treatment in terms of months - maybe a year. If you try and go too fast, you will overload your body with toxins and experience more symptoms - both in amount and intensity. A steady, slow and determined path forward is your best bet. I know this from my own experience and what people will tell you on this forum. Plus, as I stated before, improvements come almost imperceptively slowly - that is, you won't notice an improvemnet day-to-day - but you might notice one 3 weeks later when you look back at how you were before. Also, it won't be straight up and out of the symptoms - they will cycle good-to-bad, etc. But, in the end the good days will slowly begin to out-number the bad days. I have been being treated now for 6 1/2 months - the 1st 4 1/2 months, I didn't notice much change or improvement at all then, I began to feel better and it's been getting better even since then.

Some people come along more slowly, some more quickly but I guarantee if you try to force the issue, you will not like the results. Not trying to scare you, but just trying to lay it out there as it is! I cannot understand why your LLMD is "unsure" about Lyme either. You have the IgM OspC positive and you appear to definitely have bartonella. Plus all your clinical symptoms appear to be enough to clinically indicate Lyme. Lyme ELISA is a useless test - something like 70% or more false negative so that test isn't even worth taking except that CDC recognizes it. Basically, it can only tell you if you're positive for sure, it cannot tell you if you are negative. Tintinnitis, neuropathy, trouble concentrating, dizziness, blurry vision and just the feeling that you're going crazy? Does this sound like your symptoms at all? Well, that was me a few months ago and I still get some now - the ear-ringing is still with me but not as bad and sometimes goes away.

Unfortunately, uncertainty is the name of the game with Lyme...I hate it too but it's a fact of life. One thing that really helped me turn the corner is acupuncture - if you can find a practioner that understands Lyme (mine had it BAD 5 years ago), it can do miracles to help you feel better. Good luck and keep checking in here with your progress!

I'm not sure how long it takes to get better, but I hear that eventually the meds. help.

Most of my symptoms were neurological- numb feeling in my face, tingling all over, cold and shiver sensations in my scalp, a dizzy/off feeling. Plus flu like symptoms- low-grade fevers and general icky feeling. Ibuprofen had become a regular med. for me and helped me feel SO much better.

The first month after I started Doxcy I was feeling better. Then I started a second antibiotic to break up cysts and everything has gone haywire. My symptoms seem to be getting worse at times. I have muscle spasms/twitching that lasts for hours, headaches, a low-hum in my ear, occasional ringing in my ears, muscle cramps that are painful enough that I can't put weight on my legs, and general aches and pains that come and go. I am 8 1/2 weeks into treatment.

I've also experienced hypersensitive skin, usually at the same time as overly sensitive hearing to high pitch noises. Sometimes it feels like there is a vibration running through my skin. Feeling weird has become a daily part of life.

I've been told that this all WILL eventually go away and that I'll feel better. I wish I could tell you that it happens quickly, but it looks like it can take many months or even years for some people.

You said you tested positive for Bartonella recently and Lyme in the past, right? I don't understand how a LLMD could think that you are a hypochondriac when your test results show you had an infection.

I hope you start feeling better soon.

Hi James,
Wow, lumbar punture and an MRI???
Neuroligists and endocrynologists are the
the place to go if you need
a " hypochondriac" diagnosis.

Your LLMD?? What else are they testing?
Parasites stool test. The best is $399 from Metametrix
and can not be compared to other stool tests.

Lab corp does the HLA gene test.
Medicare paid for mine.

Betterhealthguy.com if you go to his page on
Shoemakers 2011 biotoxin conference
Has all the tests listed that even LLMD are not
doing.

Igenex is expensive and you will still want to
know about all these other factors.

What brought on this "flu"?
Any tick bite? Were you outdoors?
Do you have pets that run outside a lot
near woods?

Did you move?
Change job location?
Any possible exposure to molds
Or other enviro toxins.

I love the betterhealthguy.com website.

It is my new place to refer my doctors too.

Keep us posted, James.

Where in Europe?

Bucci

Post Edited (bucci) : 12/23/2011 4:09:01 AM (GMT-7)

Hope all goes well and you see an improvement!

And Happy New Year!

Hi, Im taking charcoal, chlorella, Im drinking fresh lemon juice, sometimes I use infra sauna which gives me relief for a while. I'm trying to exercise but my muscles are very painful. Hope I get better soon.

Happy New Year to everybody!

Good!! Try stepping up your detoxing a little, but only a little at a time. Can you use the sauna more often? You could also start using the detox bath or just the foot bath that's described in our "New to Lyme?...Start here!" thread at the top of the forum. The second post down has the info you will need to get started. YOu most likely have everything you need to start already in your home!

Don't do any strenuous exercise - just some gentle exercising or just stretching if that's all you can do.

A word about the spot on your MRI of your brain - it is rather small, and could be just a normal occurrence due to your age, or from Lyme. Many here have quite a few -including myself - of those spots due to Lyme disease. Almost all of those spots will most likely go away with treatment, so the fact that you only have one spot is really nothing to worry about.

Hello, my B12 level is fine, Im also taking B vitamins. Ive found that 'numbness' is one of the possible side effect of minocycline: "Case reports have described a severe central nervous system-pulmonary hypersensitivity syndrome requiring high-dose corticosteroid therapy. Signs and symptoms have included dry cough, fever, ataxia, muscle weakness, numbness, visual abnormalities, abnormal brain MRI, seizures, pulmonary infiltrates, elevated serum IgE and erythrocyte sedimentation rate, and eosinophilia." Almost all of my symptoms... Should I stop minocycline or continue? I dont want to end up on corticoids :(

My brother actually had two Drs/ arguing about his case. One said MS one said Lyme.

I go by this what effect does taking antibiotics do if taken for a good 8 weeks. Another biggie is this (wont help guys sorry) did pregnancy make you feel better? I was NOT better when pregnant I was very sick. M,S sufferers will usually experience a wonderful reprieve of symptoms!!

Then there is the leg drop. I am sorry I am using the wrong term I think. I am trying to say in MS often one leg (I think left?) kinda like drags a little behind..

I am sure some MS people do have a parasitic infection but not all.

MS is not understood just like other autoimmune diseases.

At this point I think it would be very good for you to re-evaluate your symptoms. Frequently the reason why Lyme treatments stall out is because of another tick-borne infection - usually Babesia or Bartonella- is preventing more healing from taking place.

Has your LLMD suggested that you could have another TBI (tick-borne infection)? If so which one(s) has he suggested?

Also, you should start dry skin brushing and be sure you are eating as healthy as possible. If you have any allergies, do all that you can to avoid exposure to the offending item(s) - especially if they are from foods.

Well that's good news James,

That should put paid to some of your worries!

Hope you can manage your stress during your exam time. Get as much rest as you can and detox!

Good luck