posted
Just wanted to introduce myself. I'm 40 years old, happily married with 3 kids, live in Pennsylvania and was just "diagnosed" with Lyme.
The reason for the quotes up there is because my doctor refuses to admit that the symptoms (of which I have nearly all) are due to Lyme because, although my initial test came back a very high positive (the number given was off the charts), the Western Blot only showed one reactive in the PCR.
I keep trying to tell her that the tests are often unreliable, especially in late stage, and that she should be considering sudden onset hypothyroidism, pre-diabetes (my numbers are very slightly elevated, not clinical in the least), sudden and debilitating joint swelling and pain, and the fact that doxycyline fixed all but the endocrine problems an indication that I do, indeed, have Lyme.
Judging from the early symptoms of Lyme, I suspect that I have had it for at least 5 years or so. The debilitating fatigue was the first sign, and two years ago my doc told me that she thinks I have Chronic Fatigue Syndrome and terrible Fibromyalgia. Then, all of a sudden, a blood test showed hypothyroidism, elevated fasting glucose, high triglycerides and cholesterol - all of which I have NEVER had before. I say, all of that was an indication of the beginning of my later stages of Lyme. Also at that time, I began having colossal panic attacks and feelings that my heart was racing and/or skipping beats. All of a sudden, I was falling apart.
In any case, she decided she would "treat [me] anyway", but not to expect anything, that I should expect to always be in severe pain. To her great surprise (but not mine) the Doxy cleared 95% of my symptoms, even the horrible knee pain I had had for about 5 years that would cause me to take 5 minutes to get up the stairs.
I am now on my second course of Doxy, the joint pain having returned in my hands. My doc told me that she is not prescribing it due to my Lyme tests, but because she insists that some doctors feel that arthritis is due to a bacterial infection. Yeah ... it's called LYME DISEASE!
I was really glad to find this group. I am frustrated, a little bit angry at myself for not being able to do things a mere 40 year-old should be able to do, angry at my doctor for refusing outright to read the things I have printed out on Lyme for her, scared out of my mind (especially after reading the obit thread), and tonight I cannot stop crying.
So, I'm sorry to say that I'm coming to you as a sad-sack chickie, hoping to find some friends who can give me advice or, at the very least, won't mind my whining every now and again.
Also, I have a question. Have any of you had sudden pseudo-carpal tunnel-like symptoms? They started for me out of the blue, most recently while on Doxy. The last attack put me in a wrist brace for 10 days after I went to pick up one of my cats (all of 5 pounds) and found myself on the floor in such pain that I almost threw up from it. Super weird, and super painful!
Glad to meet all of you. Sorry for the long post. Needed to get this stuff off my chest!
~ Christine
Posts: 4 | From Pennsylvania, USA | Registered: Oct 2008
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bettyg
Unregistered
posted
christine, outstanding health history on yourself!! great job of breaking up post into shorter paragraphs for us neuro lymies too!! big thanks on that one!
we've got lots to share with you, and you are in right forum for SUPPORT/RANTING as needed.
check your profile; will send you penn. llmds! **********************************************
below is what i send everyone; more info for you.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Christine,
I'm sorry you've ended up here, but it's a good place with friendly folks.
Carpal tunnel syndrome can be a Lyme symptom.
Be sure to read about coinfections, the other diseases transmitted by tick bites that also can infect you and hinder your Lyme treatment.
Take your time to read; there's so much information you'll be bombarded with over the next month. A good place to start is with Dr. B's treatment guidelines. Sounds like you already have an understanding of much of the collateral conditions such as hypothyroidism and insulin resistance.
You must find a Lyme literate medical doctor. Your health depends on it. There are a few in Pennsylvania.
Don't waste your precious energy & time trying to convince a stubborn physician how to treat you correctly. You can go back and do that after you're on your way to health.
Lymeinfo.net is has lots of medical references and a huge referenced symptom list by system. See the medical literature page which lists the persistance files and the symptom summary.
posted
Thank you, betty and hsh, for your welcome! I had to laugh at betty's paragraph comment; I'm afraid it's a lingering consequence of one of my high school English teachers, who was quite a lion in the classroom. LOL!
hsh, I had read that carpal tunnel could be a symptom, but was unsure. The article I read was a little "iffy" about that symptom, but having experienced it, I am a believer. I know people who have carpal tunnel, some to the point of needing surgery, and all have said that my attacks of it are beyond anything they have ever experienced. I appreciate that validation.
What really gets me is that it seems Lyme is almost ... intelligently malicious. During treatment, it bucks and resists, causes an almost vengeful attack of symptoms before it succumbs, or pretends to, as the case may be.
Makes me mad and makes me more determined to beat its butt!
My doctor, well. She has had me in tears of frustration. I even called her taking of the Hypocratic Oath into question. I have been going to her for over 20 years, and she is, usually, a fantastic physician. She will discuss anything with you for an hour if you need it.
She subscribes to all kinds of therapies: chiropractic, accupunture and accupressure, Reikki, homeopathy, and alternative medicines. But mention Lyme, and she shuts down. I just don't get it. [sigh]
I am looking forward to becoming a good contributor to this community!
Posts: 4 | From Pennsylvania, USA | Registered: Oct 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Just wanted to say: WELCOME!
i hope that you are looking for a Lyme Literate Doctor so that you can get a correct diagnosis and be treated properly.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Welcome to Lymenet.
On2tomorrow said:
quote: She subscribes to all kinds of therapies: chiropractic, accupunture and accupressure, Reikki, homeopathy, and alternative medicines. But mention Lyme, and she shuts down. I just don't get it.
It's not her that is to blame. It's IDSA guidelines which most doctors follow.
My own LLMD subscribed to those same guidelines when I first began seeing him. He now looks back at it and says he thought that ILADS members were some kind of kooks who were way out there.
Perhaps your seeing a LLMD, and ultimately improving, will be the best way to show her that they are not kooks at all, but really know more about Lyme than others do.
At any rate, find a LLMD and begin your road back to health!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
I wanted to welcome you too!
Glad you found us here.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Welcome aboard,,,are you located more eastern Penn or western??
GOOD LLMD's are hard to find!! (But worth the trip).
Yep, check out those co-infections!! Read those sx lists carefully and see if they FIT your probs.!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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