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Lyme Disease Message Board


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Dear Sarah,

When I read your post the other night (around 2:00 AM) I was too tired to post and for the last couple of days they have been redoing water mains on our street and keeping breaking the phone line so I couldn't respond until now.

First of all let me say welcome :wave: and you've come to the right place. You won't find another place with as much compassion and as many answers to your questions. We do joke around at times too to lift spirits.

I must say when I first read your post all I could think of was a response I got from my very first post. It read "OH MY GOD!" As I read your post that is all I could think of and kept saying it over and over again.

You could look up the first post any of us has written and see that usually the first one is quite lengthy. I had to cut the last paragraph out of mine because it went past the 10,000 characers allowed. :bouncing:

I'm sure that there isn't a person on here who doesn't relate to at least one of your symptoms. I myself was told I had MS and knew this wasn't true. First of all my symptoms were 24/7 and I was 52 which is kind of old to be getting MS for the first time.

I relate to the swelling joints because mine were doing the same especially my elbow. I went to my GP for some naproxen and he also gave me some valtrex thinking maybe what I had been dealing with for 18 months was a virus since they couldn't seem to pinpoint the problem. I had a reaction but the doctors jumped on this with both feet and then insisted it was MS and it has been downhill ever since because they doused me with steroids which is an absolute nono for lyme patients. They just wouldn't even consider a reaction to the valtrex. :eek:

I am so glad you don't have any co-infections to deal with. My tests from Quest and Labcorp came back negative in the past and in October I started seeing an LLMD in Springfield, Missouri to try and get rid of the lyme once and for all. He is sure it is lyme and didn't even want to test but I insisted. Igenex said I had 4 positives and 1 indeterminate band and according to CDC this is still a negative but made me feel better because the other labs were only showing 1 positive band.

I was lucky enough to have an ID doctor give me an IV of Roecphin for 9 weeks in 2004 but he readily admitted he was not lyme literate and didn't know about co-infections. My liver enzymes went crazy so that had to be stopped so I tried the natural route for a while but had to switch as my husband was getting frantic. I feel very comfortable with my LLMD and he seems to be well versed in lyme. I think this is what you need to make sure is a priority. Find a good doctor and have confidence in him. I wonder just how many things you had done to you that were so unecessary. That is why I cried. Can you inmagine if they had removed a toe or foot and it was really lyme. :nono: It makes me shudder. We have all had the naysayer doctors but between mine with the steroids and yours with too many procedures to list it is a nightmare. :eek:

I know you are seeing a doctor now who is somewhat educated with lyme but keep an open mind if you don't see some progress. Which lots of time is via a herx and that's when you feel worse. So how do you know you are making progress? :rolleyes: It doesn't make sense because meds are supposed to make you better and not take this long doing it but that is the nature of lyme. Some day they will have a cure for this when the CDC wakes up and realizes just how prevalent this is but until then we are our own best advocates.

I don't know of any doctors in Colorado but maybe somebody on here does. I travel from Dallas, Texas to see Dr. Crist in Springfield, Missouri. I spend more time coming and going than at the appointment but feel it is necessary if I want to get better. He even has a couple of patients in Wisconsin who make the drive. Gather your data and go from there. Both Dr. Jernigan (natural) in Kansas and Dr. Crist (traditional) in Missouri have very good websites. Learn as much as you can.

Some people on here are getting better naturally and others are on abx. As Jeanne said it is a personal choice. A lot of people even combine the two. Keep us posted on your journey and come to your fellow lymies for anything you need.

Maureen





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