posted
I have yet to have a positive blood test or spinal tap but because I live in an endemic area my Dr. is treating me for lyme ? chronic fatigue ??fibromyalgia. It all started 13 years ago with dizziness, brain fog, nausea , tingling , numbness, muscle weakness and severe fatigue . Slowly got better, waxed and waned . Now its back , neuro r/o MS again, saw 2 small lesions in MRI spinal tap clear for MS and spirochetes. I have pulled deer ticks off. Have been on doxy x 2 months brain is clearer, fatigue better, eyes really hurt this time and have numbness and tingling again, insomnia, anxiety,. I am in the right forum,could this be a relapse of chronic lyme. I am an ER nurse have been out of work x 3 months , at one point could hardly stand.
Posts: 41 | From new york | Registered: Mar 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
breaking this up to make it easier to read
I have yet to have a positive blood test or spinal tap
but because I live in an endemic area my Dr. is treating me for lyme ? chronic fatigue ??fibromyalgia.
It all started 13 years ago with dizziness, brain fog, nausea , tingling , numbness, muscle weakness and severe fatigue .
Slowly got better, waxed and waned .
Now its back , neuro r/o MS again, saw 2 small lesions in MRI spinal tap clear for MS and spirochetes.
I have pulled deer ticks off. Have been on doxy x 2 months brain is clearer, fatigue better, eyes really hurt this time and have numbness and tingling again, insomnia, anxiety,.
I am in the right forum,could this be a relapse of chronic lyme.
I am an ER nurse have been out of work x 3 months , at one point could hardly stand.
posted
Sorry first time I posted. Still on doxy was 200mg twice a day ,now 100mg twice a day this is my tenth week.
Posts: 41 | From new york | Registered: Mar 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
do you have a lyme literate doctor?
the dose of doxy is kind of low.
If you go on over to medical you will see a post at the top of the page with newbie links. Lots of good information.
This board also has a good search function...keep reading and keep posting.
ive been out of work since Sept 05 went back from Dec-Feb and now im back out again...it was just too much for me.
Im glad you found this board.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Welcome Patti-
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
the lab was ingenex and my western blot and spinal were read as neg. My rheum. is very aware of lyme. He is calling it fibromyalgia. Today my eyes hurt so bad. I am losing my hair. Does anyone know if going through the change can cause a relapse??
Posts: 41 | From new york | Registered: Mar 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by erpatti: the lab was ingenex and my western blot and spinal were read as neg. My rheum. is very aware of lyme. He is calling it fibromyalgia. Today my eyes hurt so bad. I am losing my hair. Does anyone know if going through the change can cause a relapse??
Hi ERPatti. Welcome!
First mistake: Going to a rheumatologist. You say he is "very aware of Lyme," but I'm betting he wouldn't know Lyme if it hit him in the head.
You say he read your western blot as "negative." I'm betting your western blot would be read by an LLMD as having significant positive or indeterminate bands. Wanna post your results here?
Not only that, but if he was an LLMD as opposed to a rheumie, he'd diagnose you clinically, which means based on your symptoms, and NOT on your test results. Because he'd already know as a no-brainer that people with longstanding lyme -- some of the sickest people, don't even make antibodies anymore - so about 25% of em will come up negative despite being really, really sick.
That's why Lyme is a CLINICAL diagnosis.
That's why you have GOT to find an LLMD. If you are going to get better.
Post your IGeneX results, 'kay?
Most neurolyme lumbar punctures are clear, so that don't mean nuthin'.
You are gonna get better, you've just got to find a good LLMD! At least you've found a good support group -- US!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
All your symptoms are possible lyme symptoms...
I personally have had very bad expereinces with reumatologists...
In my expereince they call chronic lyme either fibromyalgia (sp?) or "post lyme syndrome"
I have no medical expereince but you may be getting more symptoms cuz your dosage was lowered.
If I go off antibotics for even a few days (or when i was on an inadequate dose for even a few days)
my symptoms get much worse.
I would think maybe you want to find a new dr. there are very few drs. who actually treat lyme and its co infections adequately.
A lyme literate dr. will be able to tell you if you have lyme... and if you do.....
they will give you appropriate treatment.
Another question is why is the rheum giving u antibotics if it is just fibro?
posted
Carol, I started to really think I had MS or some exotic syndrome that no one knew of. Even though I am I nurse, I seem so much sicker than the pts I treat. It was all I could do to walk from bed to bathroom , and a shower exhausted me. I had more symptoms than an MS pt and yet no abnormal neuro signs. Thanks for making me aware of this forum. The more I read the more I see that I do have lyme. patti
Posts: 41 | From new york | Registered: Mar 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
erpatti, I know I'll probably never work as a nurse again.
My cousin's wife has cancer, and is feeling well enough to play golf.... I'd be happy to be well enough to go shopping.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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bettyg
Unregistered
posted
erPatti,
Check out the info towards the bottom about NOIR sunglasses & sun sensitivity ok!
Welcome to this 24/7 LYME support group board! Here's TREEPATROL's and Tincup's combination newbie links.
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; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
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.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
posted
carol I can't give up hope that I will be able to work in the ER again. Last time I was treated for lyme in 1992 I went back to work in 6 months . I recovered a good 90% till this relapse. I turned 50, started menopause, my daughter went away to college , and bam!!!!. It was like the lyme was just sitting there waiting. I am slowly getting better. In feb . It was alot to walk from bed to bathroom and take a shower. I do little projects everyday and pace myself. Shopping {lights} its too hard. Go in and out of store , get dizzy and weak.Has anyone noticed their hair thinning and eyelashes???
Posts: 41 | From new york | Registered: Mar 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have been sick since 1987 and I plan on going back to work.
(and I was like you. I had to hold onto the walls to get from the couch to the bathroom.
I was sleeping at least 20 hrs a day and falling asleep in the middle of my own sentense)
I am much better than I was.
I still have a long way to go but under the care of my llmd I not only believe but I KNOW I will get well enough to teach art.
So please do not give up hope.
Even in the darkest moments you have to hang on to hope.
Even when you can't see it there is light at the end of the tunnel.
posted
I know we can't name Drs in the forum. I live within a 1/2 hour of Dr. B in the hamptons Ny, I saw his name and protocol on one of these pages, how do I go about discussing that??
Posts: 41 | From new york | Registered: Mar 2006
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
He is suppose to be the BEST!
Do you have the funds to see him?
If I was that close I would go ahead and call and get an appointment--the appointments take awhile to get!
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hi and welcome,
you go over to find a doctor and someone can p.m. personal message you with any info they have on getting an apt with Dr. B. Otherwise, just call his office.
good luck
you are in the right place
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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posted
appts are available in 2-3 months after you primary Dr. agrees to work with Dr. B. My primary calls its fibromyalgia, my rheum. is giving me the antibiotic. It costs 900.00 first visit 2-3 hours no insurance accepted
Posts: 41 | From new york | Registered: Mar 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Beg, borrow, steal!
Kidding, don't steal.
Can you post us your IGeneX results?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I know the price for treatment might seem high...
But trust me you pay a much higher price if you recieve no or inadequate treatment.
posted
Michelle, I have to get a copy .Both my spinal tap and 2 blood tests western blot went to that lab. My rheum. and neurologist both read them as neg. I will post it. As a nurse I didn't even question them.The good news I have been using sick time , called my union and can get another 6 mths of disability . I work in the ER, and its all i can do to walk alittle right now . Last time I got back to work but I was 13years younger, this relapse?? its kickin my butt bad. I will post as soon as I get it .thanks
Posts: 41 | From new york | Registered: Mar 2006
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