posted
Hi Everyone this is my first time here and I have been reading through alot of stuff and I think this will help me immensely.
Here is my story, tell me what you think...
In the summer of 2001 I went to Old Lyme CT and camped out there with my girlfriend. About a week or so later I noticed an itchy red rash on my hip (it wasn't a bulls-eye or "target" shape).
I never once saw an actual tick so I never thought twice about it. Thinking back now I do remember being very tired all the time, but there wasn't really any other symptoms.
Then maybe a month or so later I went on a road trip to South Carolina (myrtle Beach). On the way down I started noticing strange things, one eye was shutting faster than the other when I blinked. It was a 13 hour drive so I fell asleep on the way a few times.
When I woke up the second time in Virginia my lip was numb on the left side, same side as my "slower eye". I thought I had pinched a nerve or something and it would go away but it didn't.
I found out later over the phone from my mom's husband that it sounded to him like bells' palsy (hes a PT).
A few days went by and I decided this wasn't just a pinched nerve, and I went to the walk-in clinic. They had no idea what was causing it and thought that I had been stung by a jelly-fish.
They gave me 2 shots of decadrol (steroids) right into my lower back, and put me on oral prednasone for a week. Didn't help.
I finally got back to CT a week later and I got a call from my dr. who my mother had been in contact with while I was on vacation, she figured out that it was Lyme Disease. The Dr. put me on Doxy for 2 or 3 weeks and the bells' totally cleared up, and btw the lyme titer came back positive.
I figured I was cured... but recently I have noticed tremors all the time, which seem to get more violent when I lift weights, also stiff necks, and migraines that occur quite often, but the most annoying symptom that I have been experiencing is hard to describe... I feel like I am in a dream most times, I can't focus and it seems like I am lacking mental clarity (almost like I was high on pot).
I also have trouble remembering things. My GP sent me for an MRI to find out whats going on, he said that the MRI came back normal, but I requested a copy of it for myself and took a look at it, the only thing I found in there that didn't look right to me was "tiny punctate lesions found in the midbrain which may be of questionable significance".
My GP did a western blot test for lyme and he said it came back negative. He put me on 10mg of Inderal for anxiety and tremor. What do you guys think? Should I see a different docotor a LLMD? Can someone suggest a new one? Did anyone else expereience this ??
Sorry for the long post, its just very hard to get answers from the DR's... he is convinced I am just a hypocondriac, so I try not to mention too much to him.
[ 23. January 2006, 03:50 PM: Message edited by: DamnTics ]
Posts: 19 | From Connecticut | Registered: Jan 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I sent you a private messeage with Dr. info.
Sad that in CT we have so few Drs. that bother to learn of lyme and don't use proper tests nor reliable labs. It is sickening...literally.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Thank you for your reply, I also forgot to mention in my post that I am 23 years old, and recently started taking something called Silver Biotics. My girlfriends dad gave it to me when I had the flu, he said it would make my immune system better... the funny thing is I have been taking it for a few weeks now before i found this site and I didn't even know about silver as a suppliment for Lyme's... I did notice that I seem a little more clear in my day to day tasks, I just figured it was because I was sleeping better, but now I am starting to wonder if the Silver has helped that.
Posts: 19 | From Connecticut | Registered: Jan 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Hi there,
Did you get a copy of your Western Blot test? Just looking at positive or negative is not the full picture. Did it report the specific bands?
Silver has been used by some against Lyme and other pathogens. I have not found it to be highly useful, but some do.
You may also want to check out my story at the site below. Good luck.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, DT!
Good for you for getting your MRI results back to look at yourself! The "tiny punctate lesions" are consistent with Lyme and chronic fatigue syndrome. Brain fog, migraines, and stiff neck are real consistent with neuroborreliosis -- "brain Lyme."
Steroids tend to suppress the immune system, allowing the Lyme bacteria to go where they want, perhaps to go into hiding to emerge later and cause worse symptoms. (Happened to me, too, and my later symptoms resemble yours.)
You are not a hypochondriac -- you probably still have Lyme disease. Take a list of your symptoms and your MRI results to an LLMD.
I hope you feel better soon, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
Welcome to this 24/7 LYME support group board!
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; 40 pages, read daily & become familiar with it. He is the lyme literate MD, LLMD, expert for chronic lyme.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc. If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms. http://www.lymeinfo.net/lymediseasetreatment.html
Please go back to your 2 posts and edit/PENCIL icon breaking up your LONG pargraphs of 6-8 lines of text and DOUBLE space between them for us chronic lymies. We just can't read/comprehend things this long. Thanks for helping us help you.
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posted
I made a new appointment with my doctor... I plan on printing information out from here and showing him.
I hope that it will help him to help me. Is there anything in particular that I should point out to him to help him make a diagnosis? As I said, he did an elisa and WB and told me that I was clear of Lyme
I don't see how that is possible because my lyme titer came back positive 5 years ago. If it is laying dormant in other systems how can he tell that it is Neuro Lyme? I saw a neurologist who also gave me a clean bill of health.
Are there any meds that are good for treating the tremor and brain fog? If I can get rid of those two things, I believe I will be back to normal.
Posts: 19 | From Connecticut | Registered: Jan 2006
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posted
Hi, I'm from CT too. Rough state to have lyme, seems like all the docs are in denial--big time.
Good luck trying to educate your non llmd. I'll love to hear what they say. The only way I got diagnosed was when a friend of ours (an MD) sent my blood to stonybrook lab in new york-cost me $275 out of pocket. After two neg labs from my regular docs junk lab, the stonybrook test came back CDC positve IgM.
When I get well I plan to embark on an eductional project in CT for primary care physicians. The ignorance of our doctors is a sin. Best
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Rough state to have lyme, seems like all the docs are in denial--big time. 
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