MS or Lyme disease

[jeffrey44]

5 years ago diagnosed with MS. Is is possible it can be Lyme disease and not MS? MRI shows lesions with some disability progression. Have tried ALL MS meds with no help. My history might lean toward Lyme. Age 14 thought to have had Rhematic fever but never confirmed. Oval skin rash, slept for days at a time, high fevers of 104, extreme exhaustion, lasted for 6 to 8 months. On and off growing up with some balance issues and migrane headaches from time to time. Was active in generally good health until age 39 when I had surgery for skin cancer on my forehead. 3 days after the surgery, severe back pain and the paralyzed on right side of body. Spinal fluid normal, elevated protein, only thing was MRI showed lesions in the brain and neck. Symptons on and off, steroids and interferons made things worse. My pharamist asked if I was ever tested for Lyme and the answer was no. Set up a new appt with a doctor to test me. Is this a waste of money or a smart move? Could it be that I really have Lyme and need serious antobiotics?

[patsy10]

It surely sounds like lyme may be the culprit.  I'm not a bit surprised.  That's one the reasons I post on this site to help inform people about lyme since it is not widely recognized as a problem.  I would rather have a treatable illness than one with no real treatment or cure.  Keep up posted please and I wish the best to you.

[jeffrey44]

Ok, posted for first time 2/11, results back from my blood tests. Western Blot test negative with band 41present on Igg and Igm. The big deal is two other tests. my vitamin d level is 9 (32 - 100 is normal) and my CD57 panel is: 1 L (2 - 17 is normal) and
                            18 L (60 - 360 is normal)
On Monday new test will be done by IGeneX for more sensitive testing for Lyme.  The CD57 so low would lead toward LYME from what I understand.  The doctor wants to cover all angels to proceed with a treatment plan.  I cannot believe that after 5 years with an MS diagnosis, it could really be Lyme disease. Wow!

[patsy10]

Good luck at your appt.

[jeffrey44]

Thanks for the reinforcement that I am on the right track. The doctor I found on a lyme site showed that he is lyme literate. I emailed his office to make sure he is lyme literate and they have assured me he is ver knowledged in diagnosing and treatment. I will respond after my appt in the morning.

[patsy10]

I agree with staley.  Testing in very inaccurate.  You really need a lyme-literate doctor to diagnose and treat lyme.  I had bullseye rashes years ago, followed by an infectious, neurologic problem with MS-like symptoms, fevers etc..Long story but I took antibiotics and got better but never 100%.  It went into remission but came back out after a surgery I had in 2005.  I have responded to antibiotics again.  All my testing both for lyme and MS has come back negative but I respond to antibiotics.  I think a trial of antibiotics is worth it.  MS isn't curable.    Lyme is treatable but I don't think it is curable at this stage. My symptoms came back after 7 years of remission.  Steroids will make lyme worse. I don't know for sure if I have lyme but this all started after bullseye rashes (3) and nothing is showing up on testing.

If you read the lyme forum here, someone recently posted that they were bed-ridden for a year and lyme finally showed up in their spinal fluid.  All lyme testing had come back negative prior to this.  Spinal fluid rarely shows a positive for lyme even if someone has severe neuro lyme.

[Carol in PA]

Staley gave you good advice.
Some resources for tick borne infection are:
Canadian Lyme Foundation, at canlyme dot com.
The flash discussion group at LymeNet dot org.
Lyme Info at lymeinfo dot net.

Wishing you the best,
Carol

[staley]

I would highly recommend finding a lyme literate Dr. in your area. From your profile, it appears that you live in WA, but where did you live growing up. The reason I ask is that some places are hotspots for lyme. Interestingly, there have been cases where persons were diagnosed with MS or ALS, and made a full recovery after testing positive and treated for lyme. There is quite a bit of controversy about testing for lyme, which is one reason why you need a lyme literate doctor. Unfortunately, some Drs. have gotten themselves in trouble for prescribing long term iv antibiotics for suspected lyme cases (insurance cos. don't like paying). Some people have improved with the iv treatment, despite never testing positive. Seven years ago, I had the characteristic rash, but tested negative. I was given oral antibiotics for one month. I tend to get a bunch of weird feelings now and again, but still test negative at every physical. Maybe it's still in me. I don't know. From what I have learned, the oral meds will treat it if caught early, but once it goes on to a neuro lyme, then you need iv meds for a while. Of course, that brings side effects into the equation. In addition to causing all kinds of neuro problems (including abnormal findings on brain mri), advance lyme can literally make you go insane. Also, steroid therapy makes it worse. From your description, it certainly sounds possible, if not probable. I am not a Dr., but I have read quite a bit on it. Please take my advice and do some research for someone in your area that really knows lyme. I wish you the best.