Discussion in 'Lyme Disease Archives' started by mindyandy420, Feb 25, 2009.
How long do you think you've had Lyme?
I have had it since late summer 1987. Just got diagnosed Feb 2009 due to my own research and persistance. I had a fibromyalgia diagnosis for 21 years.
I don't remember a tick bite. So, when I try to think back as far as my symptoms go, I know I started having problems in the second grade. So, I was 8 years old.
I am now 36 (almost 37) and not working. I worked until last year. I still had difficulties, but now the fatigue is killing me and the pain is worse now that it has ever been. I have gained 30 lbs, and not very happy with my life.
22 years, & I'm still being denied treatment.
Wow!!, I thought I had it long.. 18 years. I just got diagnosed using a new blood test.
After a trip to the Ozarks in 1969, when I was 11, I came home from this trip with "the flu". I remember having a high fever and achiness all over. I was in bed for about a week or 10 days.
There is no "flu" in the summer. We don't all get flu shots then.
2 months later, my periods began and it was clear from day 1 that I had endometriosis symptoms. Many women with Lyme, CFS and FM have endometriosis. So much so, that the Endo Association puts out info about these co-illnesses. They have not seen a connection to Lyme or Borrelia yet but there is a doctor studying endometrial implants for Borrelia.
About 6 or 7 months later, or the winter of 1970, I developed a severe hand rash. They thought it was eczema but it didn't respond to the industrial strength cortisone cream the docs prescribed. It was like putting gasoline on a fire. The rash jumped from one hand to the other. The rash finally went away when I started getting Abx for many months for chronic ear infections about 3 years later.
Around 1974, I came back from trips to NY and MI with 3 small round rashes on my shin. I was told it was "ringworm" and given meds. The rash cleared up but by then, I had muscle pain and fatigue almost all of the time. I was disabled by the endometriosis.
In 2001, I was bit by another tick. This time I was hospitalized in 3 different hospitals in neuro intensive care. I was told it was epilepsy and sarcoidosis. I would appreciate No MP comments here PLEASE -- I don't believe it's good science and it's not for me. I am very sick of the whole vitamin D discussion on this an other boards.
Along the way, I've seen about 208 doctors. Only one thought to run a test for Borrelia but I never got the test as I was transferred to another hospital. After getting a "negative" test for Lyme at the Detroit FFC, I sought out the help of a LLMD. There were too many positive bands for it to not be a significant finding.
I've been in Lyme treatment for close to 3 years. I have no more TMJ, no more daily tension headaches, no more migraines, no more asthma, no more costochondritis, no more FM or muscle pain and no more fatigue. Long term Abx, heparin, hormones and AF meds (Diflucan, Pro-biotics and Nystatin) have done wonders for me.
I think I have had lyme for about 10 years. That is when my knees started hurting, I had found a tick on the back of my head and did not think any thing about it. I live in the woods on 14 acres. Sometimes I wish I'd never seen this property, maybe then I would not have gotten this dang lyme....it just hurts so bad...ya know?
I took a tick out of my sister's head in the 60s. In 1970, I lived for a month in a place where we picked 40-60 ticks out of the dog every day--how could I not get bit at that time?
In 1977, I got a terrible flu that lasted for 5 years or so. I slowly went from almost completely bedridden to almost well. I was doing pretty well for a few years, but still had limited energy. Then, I had a physical trauma, and went into a relapse that left me worse off than before. Instead of sleeping all the time, and never having energy, I went into total insomnia, with muscle pain and brain fog.
I went to many doctors, and was treated well by only one MD, who had no idea what to do, but at least believed I wasn't lying. Naturopaths were helpful with diet and herbs, but couldn't find a cure. I tried to do research and tried different products for many years. Some years were better than others, and I never could pinpoint why. It's a waxing/waning sort of illness for me.
Then, I went thru menopause, and started down hill fast. It started to be seriously painful, and joint pain came into the picture. That's when I found a LLMD, and he really helped me get my life back.
I'm doing a lot better, but am still in treatment. After all this time, and at my age, I wonder if some of the damage is permanent. The insomnia hasn't responded to treatment, so I may always need help to sleep. And I will always want to take something to keep control over this infection.
Since the summer of 1989. So almost 20 years. Been in treatment for 1 1/2 years now and starting to do a little better.
I got it in 1958 so it has been 51 long years.
Hi becky, I was wondering if you are being treated for Lyme and is it helping? I am waiting to see another LLMD because the first one didn't think I had Lyme. I have just about all the symptoms and I now know Cfids and fibro are syndromes. I have had problems all my life with no memory of a tick bite or rash. After menopause I have gotten worse. My Igenex test had some inds but my Dr. still didn't think it was Lyme. My CD-57 was 21. My gut feeling is that it is Lyme. I don't see what else it could be. Are you feeling better at all? I hope so, thanks, Jess
[This Message was Edited on 03/20/2009]
Wow...most of you have had this for a very very long time! It is so ridiculous to me that doctors aren't diagnosing and treating people for this. I finally got diagnosed a few months ago. I had a CDC positive test so you think some doctor would have figured it out before now. Just needed one doctor to run one test on me all these years. It is frustrating. Hopefully I will get better now that I am getting treatment.
Take care everyone!
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