posted
Hi. I'm new to the neighborhood and I wanted to introduce myself, share my story, and also ask a couple of questions.
One of my very dearest friends may be familiar to you. Her Lymenet name is "Fish". I used to teach her son violin and we soon became true compadres. Through her I learned a lot about the myths and mysteries of lyme.
About ten months ago, I began experiencing some syptoms of my own that closely mirror what I witnessed "Fish" going through... ...facial numbness ...what I refer to as "claw hand" ...severe pressure in my head, accompanied by a feeling of liquid in my ears ...confusion (in many forms, getting lost in grocery store, confusing rights and lefts, missing exits off the highway I take everyday, unable to do routine things that i do everyday like getting ready for work...etc... ...staring off into space ...RAGE .......I could go on for four more pages........
I have explored Lyme with my current doctor, although I think he is more convinced that I have thrown myself into all these symptoms with my "severe anxiety". I have had the Western Blot, but not the ELISA because of a lab error. My Western Blot came back a straight up negative. The results were not itemized. The rest of my blood tests came back fine, my sed rate was elevated. I had an MRI on Wednesday, it also came back clear. I had an eeg on Friday and will hear about that next week.
While I am POSITIVE this is not my anxiety...I am not positive I have Lyme. But it Has to be either confirmed or completely ruled out. Currently I am scheduling an appointment with another doctor to at least get a Western Blot that will be itemized with the different bands through a different lab. This is in preparation for an appointment that I have with a LLMD in Pittsburgh at the end of August. Any other suggestions for the time being?? Im going crazy here.
Questions...
...Have any of you experienced whatI call "Claw Hand"? The first time I assumed it was numbness because I had already experienced the facial numbness. What I realized as it continued to happen is that is actually is a stiffening of the muscles in my hand. It lasts only about 15 minutes.
...LYME RAGE?? Do you tend to target your loved ones?? Please dont hate me...all you dog lovers out there...but I actually began choking my dog the other day and today I tripped my significant other...on purpose...geez...something is wrong here.
Thank You for listening. Even if it turns out that i dont have Lyme it is nice to have somewhere to go to read about people who are experiencing similar syptoms to me.
posted
Becca, I sent you a PM, private message earlier when I saw a new member with my 12 pages of newbie links.
Yes, many of us have lyme rage. Are you on any depression/mood pills? Im on zoloft; it helps my quick temper.
WHat lab is western blot going to? Hope it's IGENEX; majority here get the best, accurate info there. You can read about it in newbie links I sent you. welcome!
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
You don't have lyme...
You're just tired of cleaning up dogy doo doo!
And your husband is probably a pain in the butt and deserves tripping.....LOL
If you're close to Pittspuke(sorry I'm a browns dihard fan)...you should investigate the two llmd's in Hermitage....
This would be your best bet....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Western Blot explanation: http://tinyurl.com/ffn3x Pay close attention to what Michelle M wrote at the end of this essay.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
You might want to research:
"Celiac disease (CD) is *increasingly recognized* in North America and is associated with a peripheral neuropathy." The rage, facial paralysis, even the "clawed hand" can be symptoms as it does take nutrients to keep our nerves healthy (esp. B vitamins) and our neurotransmitters come from nutrients.
This is a recessive gene. Many have CD and don't know. It also can be triggered by viruses (new or dormant...EBV = mono as a kid and mycoplasm pneumonia).
It is treated today with a very restrictive diet...which takes about a month to "kick in".
Researchers have identified the enzymes (pancreatic) needed to breakdown gluten and someday those suffering with this digestive problem will be able to take a pill...like they do for dairy intolerance...Lactaid. This is in the works and will make life much "nicer" for many.
If you have this disease and continue to eat gluten, it is acting as an "allergen", triggering inflammation and the spiral continues downward as more and more "symptoms" happen.
Lots of weird things (symptoms) happen if we don't/can't absorb nutrients. Like lyme...the symptoms vary from person to person and can be numerous.
A relatively easy way to figure this out is to go on a gluten free diet for a month and see if you feel better, if the symptoms start to go away...while awaiting additional testing.
Whatever the underlying CAUSE...genetic or a pathogen (bacterial/viral)...bottom line...somehow your nutrients are imbalanced.
It takes time to uncover the underlying cause and I know...waiting is hard!
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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