I posted this below my request on the LLMD request forum to give some background, but I'm posting it here since maybe I'll get some more readers.
It's been a long journey. I grew up and still live on the old rural family farm. Removing ticks was/is commonplace on a regular basis. I can recall especially while putting up hay, coming in from the fields, and my ankles having several ticks to remove.
In the summer of 2003, at age 18, I came down with a mysterious illness - lymph nodes swollen, flu-like symptoms, swollen knees, very stiff and hurting neck, bad headaches, low fever, etc. I had been out haying the week before. I had always been healthy and strong, not a problematic weak child. I think the only time I ever had to see a doctor was for routine sports physicals.
Due to it being a rural area and not many health care options, I never saw a doctor back in the initial onset of 2003- I didn't know better. Eventually after being bed ridden for a couple weeks, the fever and other symptoms improved and I felt better. Looking back though, I wasn't 'right' though, I maybe was 90% what I was before the onset. That fall, I entered college and proceeded to get weaker and weaker. More headaches, stiff neck, night sweats, I was loosing hair, odd feelings in my arms, sometimes out of breath, ribs and my sternum hurting. Also started drooling in my sleep.
I saw several doctors and they were of the attitude that it was some cold or flu and get some rest and feel better. But I kept getting sicker. One doctor actually said my physical problems were due to depression and offered to give me zoloft!
I had to discontinue studies at college due to the overwhelming snowballing physical problems. I was there on full academic scholarship, and lost the aid due to not maintaining constant enrollment. It was one of saddest days of my life.
I kept seeing doctors in that 2004-05 period. It seemed nobody wanted to spend any time thinking about things, and I was a bother to their 12 minute schedule. Eventually I was put on some antibiotics after one doctor decided to try the shotgun approach. Boy did I have a herxheimer reaction, but then seemed to get a little better. Well that short time came and went and the doctor said the antibiotics would of killed whatever they needed to, and that he wouldn't give me any more. A week + or so after my antibiotics were "revoked" boy did I fall apart even further. I felt like the living dead. That pattern was continued by a few more doctors, but in the end I kept getting sicker and sicker. 14 days of doxy or 7 days of azithromycin wasn't cutting it.I got some positive effect, yet it seemed like I was trying to fight a battleship with a slingshot.
In 2006 I eventually got pawned off to a Chronic Fatigue doctor. She had a lyme test done at the local hospital, and it was negative, so she declared that "there was no way its lyme". (I have since learned these tests are very inaccurate). That was the first time I was tested for it, and have not been since.
I kept going downhill physically. My joint and neck problems became worse and worse; especially my knees. At one point an ER doctor said I probably had some form of viral meningitis - it was that bad. Night sweats too, horrible weakness, loss of feeling in fingers, sometimes at my worst trouble speaking.
I lost my insurance and since I hadn't been able to work constantly, money was non-existent. I couldn't even see the not-helpful doctors anymore. I had nearly given up and felt like I was one step out of the grave.
Things got so bad and desperate in 2008, I tried giving myself vet-grade doxy and penicillin injections. I really had nothing to loose at that point. Remember, I was a farmer, so access and using it came naturally. Within a few months I felt like I had a second chance at life. I was not well, but markedly improved.
This continued through last year (2010). Last year I was substantially improved and felt like I could actually enjoy life a bit.
It became I couldn't tolerate the penicillin anymore last fall, and had to quit it. By this spring I was steadily getting worse and really bad the last few weeks. Once again the feeling of being one of the living dead had set in. Since my situation had improved somewhat last year, I now had kinda-sorta insurance and some $ to pay for things. So I went to see yet another doctor and well, they thought lyme upon my recount of the last few years. However though, they don't know how or care to know how to treat chronic lyme and I know their suggestions of 14 or 28 days of some low-dose oral antibiotic isn't going to help the situation.
PLEASE HELP. I'm scared and need a LLMD and a real treatment plan. Also any advise in general would be appreciated. Also, I need to be educated on what Lyme tests I should be asking for, and from whom.
Thanks, K
Posted by Lymetoo (Member # 743) on :
Hi there and welcome!!! This IS the right forum for help and support... but to make sure everyone hears your story, I'm going to move this to Medical Questions.
Further updates on your progress should be posted in General Support. Thanks!
I'll be back later to check on you!! (did you post in Seeking a Doctor already?)
Posted by kd888 (Member # 29652) on :
Hi K84,
Hope you get in to see an LLMD soon. But don't be scared! We've all 'been there' and we're all still here !
Also, just wanted to let you know that the Vet. Doxy you were taking is the same as the human Doxy. So you weren't doing anything wrong there. The pills are just different colors and form.
But yes you do need a proper treatment plan that only an LLMD can provide. As far as testing goes, I'm sure your LLMD will order one-- but will diagnose you on symptoms and history. The tests are very unreliable.
I lived on a farm for 20 years--- baled hay too. Pulled ticks off myself right and left and have had Lyme Disease 3 times !!
There is hope and light at the end of the tunnel.
Best of luck on your journey to getting well !
Posted by Lymetoo (Member # 743) on :
For testing, consider:
www.igenex.com .. Test #188 and 189
Posted by Cockapoo1996 (Member # 14238) on :
A good LLMD will also test you for co-infections like Babesia and Bartonella. They require different drugs than Doxy. It may be why you felt better at one time but did not stay better.
Oh and welcome! Hope you learn here and get good treatment and get to enjoy life again.
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