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Old 01-10-2007, 04:06 PM   #1
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Possible lyme?

As a child I had knee problems for years and was dx with Osgood Schlauters (sp?). I now have patella femeral syndrome in my knees (cracking when bending, occasional pain, especially with lots of use). In 1994 I worked doing natural habitat restoration and in 1995 I worked for state parks. I started having severe joint pain in one of my arms at the end of that year. I went to the doc and was tested for lyme, RA, lupus, etc. All of those were neg., although if I knew then what I know now about lyme test results, I would have demanded further testing. My SED rate was elevated, as where my white blood count (slightly), but they did no further testing of any sort. I had many tics found on me all the time I spent working outside, but never noticed an actual bite.

I've been experiencing pain, pressure, burning feeling on and off for a year. sometimes the pain is every day for as long as two months. It kind of seems to be related to my period, so I have been diagnosed with possible endometriosis and put on BCP. But a lot of the time the pain is not around my menstrual cycle. Right now I've been having the pain for 3 weeks. It's always on my right side. Sometimes in my lower right back, sometimes in my right flank, and sometimes in my right abdomen. It spans from my ovary area, all the way up to under my ribs. It often feels like burning.

Now my bowels are all messed up for the last few weeks. I had 8 straight days of "D", then some abnormal BMs. I felt like I had indegestion and heartburn for several days, along with the normal pain. My BMs are sometimes flat, some constipation, some diarrhea.

I've seen several doctors, my primary doc seems to think it's all in my head. One doc. told me there was nothing wrong with me and to go home and play with my kids. I have not even been referred to a GI doctor. I did have an abdominal u/s back in Feb. 06 which was normal.

I went to the OB-GYN and had a pelvic U/S which was normal. After three trips they finally said I may have endo. Sometimes the pain is gone for weeks, then comes back bad as ever. Sometimes it feels like nerves or muscle, sometimes like my ovary. I had a CT scan in the emergency room which was normal, and my bloodwork has been normal for liver function, white and red blood, etc. I have not had a CA 125.

I had hip joint pain in my right hip on and off for months, and now the last couple of months it's on and off in both hips. I also started having jaw/neck/shoulder pain on the right in June 06. I was diagnosed with myofacial pain disorder (sp?).

 
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Old 01-10-2007, 04:19 PM   #2
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Re: Possible lyme?

I forgot to mention starting August I had throat tickle that would cause coughing for no reason. In Nov. a doc. put me on broad spectrum antibiotics for 10 days to see if it would help. It actually did help, for awhile.
In December I started having a bad taste in my mouth, at the back of my mouth. It's there all the time, and the throat tickle with cough is back. I started taking Pepcid a week ago to see if it would help. So far it hasn't.

 
Old 01-11-2007, 05:33 AM   #3
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Re: Possible lyme?

Hello Wonderingtoo,

I was amazed when I read your story. It sounded a lot like mine. March of 05 i was having really bad right pelvic pain and lower back pain. They thought it was my appendix. CT-scan came back clean. Then I went to OBGYN and he diagnosed me with Endemetriosis. I had the laparascopic surgery to remove it but when he went in he found nothing. Hmmmm! 1st clue.

After the surgery still had the pain on and off. Gues that was not what it was. Then I became really sick in August of 06 and was finally diagnosed with Lyme in November of 06. I have been on a picc line and infusing antibiotics for the past 8 weeks. I have some really good days and some not so good days.

My test from Igenix came back negative but there were defiantley inidcations of Lyme going on there on the bands that were positive.

You need to get tested through Igenix labs in Palo Alto California. the Western Blot is the best test for this. In the links above you will find a lot of good advice. Read it all and follow it. I did and that is how I got to where I am now. Ticker is also a huge wealth of information. She will probably be along soon.

If it had nbot been for finding this board I would probably still be going Dr. to Dr. and sick as a dog.

Hope this helps.

Diane

 
Old 01-11-2007, 09:04 AM   #4
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Re: Possible lyme?

Do I have to go through my doctor to get the lyme test done? Or do you go directly to the lab? My doc. thinks I'm a hypochondriac.

 
Old 01-11-2007, 06:00 PM   #5
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Re: Possible lyme?

Sorry I was away from the computer all day.

You will need to have a doctor order the test for you. You will just need to let them which test you would like. Your best bet is going to an LLMD. They will know exactly what to do.

If you post where you are I think Ticker can help you with a Dr. near you.

Hang in there and dont' worry I had an infectious disease dr. tell me there was nothing else he could do for me and that I did not have Lyme disease. Really nice guy!

Take Care.
Diane

 
Old 01-12-2007, 02:59 AM   #6
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Re: Possible lyme?

Have you checked the list of Lyme Literate Docs in the top thread for one in your area?

I can really sympathise as my husband's Doc told him he was a hypochondriac too. They are so patronising!

With this disease it seems to be up to the patient to do all the research.

At one point he thought he was going crazy, but with the right treatment he has seen a vast improvement.

Good luck with your search.

 
Old 01-12-2007, 01:29 PM   #7
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Re: Possible lyme?

With my medical ins. I can only go to docs within the plan. they are all in the same complex, and all have computer access to my med. record. 6 years ago I started having chest pain on the left. My doc at the time told me it was a pulled muscle or heartburn. I knew it wasn't heartburn as I know what that feels like, and after several years I knew it wasn't a pulled muscle. I had several tests done and they all came back neg. Then 2 or 3 years ago I had this weird pressure in my head. Not a headache just an intense pressure. I had a CT scan, and it was normal. The pressure went away after 4 months, and has since come back for a day or two at a time, but never for longer than that. And now with my current problems with my side pain and my jaw pain....Well, you can see how I look like a hypochondriac, especially because I started having panic attacks last year. I've learned how to control those now.

The thing is, all these symptoms, including the arm pain I had when I was working for state parks, are on the Lyme symptom check list. But I have had them on and off for years at varying degrees. But it's all in my record. My medical record is pretty fat because I went so many times last year trying to figure out what was causing my pain.
I don't know if I'm aloud to post the name of my HMO?!?! If I am, I will, then those who have heard of it will understand why I can't just go find a LLMD.

 
Old 01-12-2007, 01:32 PM   #8
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Re: Possible lyme?

There are a few in CA, but I imagine they are quite expensive since my ins. wouldn't cover them.

 
Old 01-13-2007, 02:42 AM   #9
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Re: Possible lyme?

My advice is to give a LLMD nearest to you a ring explain you position and ask how much they cost. In the UK we have the National Health Service which is "supposed" to cover us for this sort of thing. But if youve read any of my previous posts on this you'll know what I think of them!

The only way we managed to get my husband any adequate treatment was to pay privately and it wasnt cheap but worth every penny for his peace of mind and hopefully continued better health.

I know the costs are high in the States but if you enquire what an initial consultation will cost you and go from there. Believe me the difference between talking to an expert and someone who thinks he knows better than you - (if you know what I mean) is tremendous. Maybe your medical practice will take instruction from a LLMD after your 1st consultation with the specialist. Thats what happened for my husband, the LLMD specialist wrote to his local Doctor with advice and a recomendation for treatment, and his Doc fortunately agreed to prescribe, which made it an awful lot cheaper for us.

Hope this helps - your health is far more important than money and if your anything like my husband was at the begining of his Lyme - I feel for you.

 
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