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03/16/2012 06:14 PM

My Story: Is It Lyme? Waiting to find out now.

Posts: 2
New Member

I recently joined a ‘Support Group' for RA and Lupus.

I have now been DX'd w/possible MS O.o Over the past 8 yrs

since I first started to ‘get sick' I was DX'd with the following:

Interstitial Cystitis, IBS-C, Migraines, CFS, Fibromyalgia, Raynauds, Chronic Depressive Disorder, RA, Lupus and now they are on the fence about MS ‘or' Epilepsy.

*Oh and forgot on my first post, Alopecia Areata* Yep I'm bald too LOL!

I go in for even MORE tests another EEG, new MRI and Sleep Study next week along w/more bloodwork.

The MRI I had last year for these crazed ‘seizure' things said ‘Lyme Related Brain Damage'.

My Dr. said ridiculous and [u]added possible Lupus related brain disease although my ‘Lupus' markers are negative and I have only tested positive for RA related markers. [/u]

A friend I met in the support group reading my problems told me that she has Lyme disease and had it for 6 yrs before they caught it. She said she went through the exact same ‘chain' of DX's that I've had.

Now I'm really afraid.

I started having intermittent seizures about 2 yrs ago and now they have progressed to this insane thing w/my entire body locking,jerking being unable to move or speak for myself and twisting in ‘unnatural' positions.

I have periods where my vision is 'off' that they call 'optical' migraines sometimes w/before or during these attacks.

Even before the actual 'seizures' I started losing my ability to think and speak.

I stutter, or slur like the connection is broken somewhere.

I'm afraid that if it is Lyme related and no one catches it, it's going to get worse.

I've lost years of memory including my childrens lives which is scary

I asked my PCP to do the ‘basic' test or if they had ever done a CD57 throughout all the myriad of tests *per my friend*. Not only did they say NO, but seemed genuinely upset that I even asked.

He said There is No Lyme in Phoeniz,AZ.

I told him I used to go hiking ‘all the time' before this started. Random trips to the Grand Canyon, Cali, OR, WA etc. He said it would have been gone long ago if I did have it.

I was a high functioning Sr Tech for the largest computer company in the world and now I can't even think of basic words and have to proofread everything I type as I will either ‘misspell' or type completely different words than the ones I'm ‘thinking'.

I have completely isolated myself now out of my fear of being unable to communicate with no warning.

I am on many meds atm for auto-immune related disorders and some of them are very powerful ‘immune supressant' meds.

Steroids and Low Dose Chemo just to name a couple. After 4yrs of Steriods I can't 'Just Stop' now. Each time we try to wean I've went into 'Adrenal Failure' *sigh*

Other than the seizures, everything started within months of each other back in 2004.

Those started about 2 years ago and are getting progressively worse, but I was showing signs of brain damage about a year or so before that. Approx 2007.

In 2004 on one of my hiking trips to the Grand Canyon I got what I thought was ringworm. A couple months later the aching and swelling started, the IC and on and on..If I do have this, then that's when I think I got it.

I'm at a loss atm and this would explain 'why' when I go back on my immune suppressants the neurological symptoms seem to get much worse.

TYVM to the kindness of the leader of this wonderful group for pointing me in the right direction of someone to test me now.

Also to a caring friend who saw that something wasn't right and pointed me here.

Setting an appt and praying for an answer, one way or the other.

emphasized, bettyg, leader

Post edited by: Bettyg, at: 04/04/2012 03:29 PM


04/04/2012 12:09 PM
Posts: 2
New Member

Sorry to hear you have been going through all of this for so long.

It is shocking that drs were not willing to consider lyme with your symptoms and history, not to mention your mri report indicating lyme.

I have had some similar things happen with me. I was dxed with an autoimmune disorder (u.c.) and developed many neuro symptoms which resemble ms. Lyme can wreak havoc on the immune system and can either suppress it or over stimulate it.

I was tested for lyme on my insistance because of previous tic exposure, but the elisa test came back negative. Drs told me I definitely did NOT have lyme. I believed them and in the following year watched my sx get worse and worse.

Ive seen many specialists, testing, etc., etc., Nobody seemed willing to put pieces together.

Finally, I insisted on getting tested by igenix and paid for it myself. A month later I had results- positive for lyme.

If you research further online you will find stories like this again and again.

I am not a dr, but you have potentially been exposed to lyme disease if you have been hiking where you say you have. Lyme infections can go into a dormant state for years before reappearing. That's what happened to me.

The fact that your mri results mentioned lyme should certainly not be ignored, and the fact that you get worse neuro sx on immuno-suppressants could indicate an underlying infection like lyme.

I highly recommend getting tested by a specialist lab like igenix and even more importantly, if at all possible, seeing a lyme literate dr.

Good luck and best wishes,

04/04/2012 03:32 PM
Posts: 32240
VIP Member
I'm an Advocate


so sad reading your story like the rest of us MISDIAGNOSED folks.

sorry, i missed this earlier, but know we talked early on too.

somehow you've got to get OFF STEROIDS; 4 YRS of constant steroids has messed up your system so bad.

hope the llmd you have an appt. for will get you started on regaining your life back.

just know we care about you; hugs/prayers always,

bettyg, leader

04/04/2012 04:25 PM
Posts: 678

I've had lyme since I was a child or teen.

Just got diagnosed Dec. 2011.

Same with the Elisa.

I thought that was definitive.... no lyme.

Dont let them make you sicker any longer. Many of us took those drugs and that just allowed the bugs to have a party and invite all their friends in our bodies.

Also, don't believe them if the say the results are negative.

Take the lab results to an llmd.

Find the right doctor.

Good luck.

Post edited by: Courious, at: 04/04/2012 05:52 PM


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