I think I contracted lyme over 15 years ago...I am just now putting together a history and event log regarding when I was first bitten and developed a bullseye type rash...does anyone have any experience with treatment after this long without it???
Posted by dontlikeliver (Member # 4749) on :
Yes, I started treatment about 2 years ago, after having been infected for probably 20 years. It definitely has helped me.
Posted by AZURE WISH (Member # 804) on :
I went at least 13 years before any treatment and it is helping me.
Best wishes
Posted by tabbytamer (Member # 3159) on :
Yep, me too.
Welcome, Kelly
Please post some of your history/symptoms when you get a chance, okay? Probably match up to a lot of us here.
Posted by SAK (Member # 7387) on :
I've had it at least 20years. I'm in tx since sept/05. Some symptoms gone . . . please don't give in now!
Posted by bettyg (Member # 6147) on :
Welcome! I was misdx for 34 years and in lyme treatment 2 yrs. this 8-06!
Lymetoo/TUTU went 42 yrs. misdx! She is almost cured....
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. Burrascono'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.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
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! http://tinyurl.com/
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.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
Bettyg
Posted by Andie333 (Member # 7370) on :
Kelly,
Glad you found the boards; I think your question is a good one.
I went for at least 9 years between tick bite and rash (and treatment with a very short-term antibiotic) and formal Lyme diagnosis.
I started treatment a year ago and am working with a doctor who is very knowledgeable about treating Lyme (around here they're called Lyme Literate Medical Doctors or LLMDs).
I'm already a LOT better than I was this time last year; there's really no comparison. I'm not well yet, but I am so much better that it gives me hope of one day having a full recovery.
Do you have a good doctor? If not, you may want to try and find one in your area by either asking in the Seeking a Doctor section of the boards or contacting a support group in your state.
The longer you've had the disease, the more dififcult it can be to treat...but it is possible and many here have gone on to lead full, productive lives.
Andie
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by bettyg: Lymetoo/TUTU went 42 yrs. misdx! She is almost cured....
Yup! Posted by kelly15 (Member # 9373) on :
thank you all for the response...I will leave a few more details.... I am married with 4 children...my oldest son has been having weird memory loss episodes...he does not have a history of a rash but has been bitten by ticks numerous times...my second son came to Kansas City area last fall and left with a tick which turned out to be lyme...he was in the Navy stationed in Seattle when he returned to base a Navy Doctor knew what it was and treated him for months until the rash went away...my third son was bitten the same week with me...we had the rash at the same time but did not go to a Doctor or seek treatment...my youngest ( a daughter) has no history of a rash but has had many tick bites....The reason this has all come together....My mother in law came to visit. After being here a week and picking flowers and walking on the property...approx. one acre lot...she developed a rash, went to urgent care, to be told she has Lyme...Now we are trying to put the puzzel togther with a time line... Thanks agin for input. Kelly 15
Posted by livinlyme (Member # 3773) on :
Yes there is HOPE: my father was DX-ed with MS 27 years before he passed away.. we found out that he was misdiagnosed and actually had Lyme disease... unfortunately we found out far too late to really save him .. but let me tell you... the last 18 months of his life he was showing so much improvement.. he was bed ridden his mind was a basket of information but no one could access it since he was so sick and conversation confused him and he was exhausted in 10 or 15 minutes...
Once he started treatment within 3 months he was alert and full of life.. mentally right there!! although the damage had been done over time he suffered many stroke and heart attacks and diabetes.. he was a mess when they began treatment.. but I will say this much.. his physical therapist believes that had we begun treatment on him a few years sooner the progress he had made in the few months before his death showed that what ever we were doing was enough proof for him that it made a big difference and a major change in his over all well being that he now believes that LD treatment was the proper path to be on.. just saddened to find it was too late to save him.. I need to add this: he was bed ridden when he started the ABX .. in 12 months he was able to take steps again with the aid of a walker.. and he was not able to make the 4 hour trip to the LLMD ... but after 6 months of treatment he was eager to get tehre to talk with his LLMD the man responsible for giving him quality back in his life..
the diagnoses of LD was 18 months before he passed away... but the quality in those months prior to his death were well worth the effort and gives all of us more hope to keep holding on to a cure for this...
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