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» LymeNet Flash » Questions and Discussion » Medical Questions » Undiagnosed/Long/Looking for Dr.

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Author Topic: Undiagnosed/Long/Looking for Dr.
LymeNet Contributor
Member # 11063

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Hello to all. I am new to posting here, but have been reading for a month. Needless to say I have learned alot.

I am quite sure I have Lyme and who knows what else. I live in Maryland, surrounded by woods, and we have two dogs who spent the summer loaded with ticks despite Frontline, etc. I removed several (non-embedded)deer ticks from my legs.
In July I had several isolated episodes of feeling my speech become thick.

I should back up and say it has been a very stressful year. My very beloved father died suddenly, I have been handling his estate and my job has been awful. I have not paid enough attention to how I am feeling.

Anyway, my brother flew us out to California to spend a week at the beach with his family in August. On day 2, I got an oblong, reddish-purple rash on my calf. I assumed it was sun poisoning. Beginning in September, whenever I had my period, I experienced that same thick-tongued feeling that went away when my period ended. I began waking up very stiff, and my previously injured neck began giving me enough trouble that I went to the DR. who prescribed anti-inflammatories and muscle relaxers.It improved somewhat.A few times I woke up with a very mild sweat, which I ascribed to being 46..

In November, we went for a fairly strenuous hike. Very suddenly the next day, I was so fatigued I was shaking. Went to bed for two hours, woke up OK but suddenly had a cold that lasted a week.

I had been pretty tired and uncharacteristically
"blah" all fall. On Christmas Eve, we went hiking again. I was fine until the next day when I suddenly felt hit by a sledgehammer. For the next 3 days, my entire body felt heavy, I had the sensation of the thick speech and felt like I was 2 degrees removed from whatever was happening.My joints hurt, my throat hurt, and i was miserable in a way I can't really describe. I could talk fine, but felt like I didn't want to, if that makes any sense.

Went to the doctor who ran standard tests. All came back fine except slightly elevated liver enzymes. The next week, my legs began to feel like lead in the mornings. I felt thick and slightly sweaty and off balance. My hands felt fumbly. One morning, my hands started shaking and my fingers twitched. I started having little muscle spasms all over, including my lips, eyes, and once my nose! Dr. sent off more obscure tests-heavy metals, more esoterics like Sjogren's, etc.I asked for Lyme which went to LabCorp and was negative.He sent me off to a rheumatologist who noted my mottled sking and ruled out Lupus, etc. She sent me to a neuro.

In the meantime, I had three nights where my legs and arms woke me, feeling like they were on FIRE. I do mean fire. My muscle twitches and spasms were very bad, too. I started a magnesium supplement which has definitely helped.

Let me say here that my mother died of ALS and even though I didn't feel I had ALS, i was still terrified. He spent a long time with me-neuro tests were fine. He was thinking Lyme, and had me do bloodwork for the 3 co-infections-I am sure through LabCorp.Bartonella and Erlich. came back negative. Even though this is 1.5 weeks later, babesiosa has not come back yet.He also sent me for a chest xray (clear) and contrast brain MRI (normal).

Last Satruday pm, I took my duaghter to the mall. We had to leave because I felt like I could not process or negotiate the crowds and the patterns of people moving around. That night I ahd HORRIBLE muscle pains and twitching. The next day I could not really function. I did not feel "sick", I could not really process or move off my bed.I had awful chills in the early evening. I dreaded that night but slept well. The next day, I felt great after I got moving in the am. The neuro called me in as he is leaving town. He ordered another Lyme plus a Western Blot IF the ELISA was positive or equivocal. We sent these to the lab at SUNY.

That evening, I was warm and happy, and my period started for the first time in 7 weeks.I woke up in the night sweaty, with diarrhea, a sore jaw, and little cold pains in my teeth.

The neuro also had me tested for Celiac and several vitamin absorption studies. As of yesterday pm, the SUNY stuff was not in, but the nurse practicioner called to say I was vitamin D deficient and hypothryroid (I weigh 104 pounds, and just do not fit that profile) and that was probably my problem, but they were waiting for all my results.

Throughout this whole thing, my temperature (usually 98.7)has never gone above 98.2 (when I feel very hot). My palms turn red, my veins alternately bulge and sink. I have the sensation that someone is rubbing a very soft fur around my ear.My feet feel hot and I have little pins and needles. I have headaches that last 3 seconds or 3 hours.Some days I feel ok, just more tired than usual.

I am sorry this is so long. I am curious about any comments anyone may have-it is not that I WANT any of these illnesses, it is just that I feel that's what's going on, and I want it treated.I do not think that hypothyroidism even begins to explain all of this.

I love this neuro, and he certainly listened to me-he has spent 2.5 hours with me in the lsat week. I am just afraid that the testing is inadequate. So I guess I am asking two things-if my SUNY results come back negative, can someone refer me to a LLMD in Maryland, and 2nd, any comments anyone has on my description would be appreciated. I feel a little crazy.

Thanks to anyone who slogged through all this.


Posts: 520 | From Maryland | Registered: Jan 2007  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (5K+ posts)
Member # 7136

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Glad they are doing a thorough Differential Diagnosis!!! Could absolutely be a TBD!!!

CA has 17.8% MIR in ADULT ticks in parts- not just 2-3% like you may have read-

I guess you have to wait on more testing to rule out other things but it does sound consistent with TBDs in my experience!!

in CA

There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 1436

Icon 1 posted      Profile for shazdancer     Send New Private Message       Edit/Delete Post   Reply With Quote 
Your symptoms sound very Lyme/babesiosis to me. And the untreated rash really points in the tick-borne disease direction.

I hope you'll post in the Seeking a Doctor forum, and find an LLMD who can help.

Take care,

Posts: 1558 | From the Berkshires | Registered: Jul 2001  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 10526

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You do not have to be overweight to be hypothyroid. It may not be the reason for your problems but a piece of the puzzle. If you are hypothyroid you'll want to treat it. Mary Shomon has a good book on hypothroidism.
Posts: 984 | From San Diego | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 9128

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I don't know much about thyroid but I do know that it can be affected by Lyme- my best friend who has Lyme (or, actually "my best friend who has beat Lyme!!") had both Hashimodo's (I think) Thyroidosis and an allergy to thyroid hormone, which her non-LLMD discovered (from reading) can happen with some Lyme patients.

After getting it all treated for 7-8 months with oral antibiotics and the Stephen Buhner herbal protocol she seems to be 100% fixed (several months of good health now). She's currently doing blood work to make sure, but the thyroid symtoms went away along with all her disabling Lyme symptoms.

Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
Homemade Probiotics thread
Herbal Links Thread

Posts: 2552 | From San Francisco | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator

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