My journey to a diagnosis of Lyme has been going on since June. I finally got to the point where I could no longer function and set out to find out why.
My Dr started with thyroid testing - after that hokey pokey and getting "high", "low" and "normal" results, I insisted she test me for Lyme. She was certain I didn't have Lyme and wanted to pursue another path - sleep study to explain exhaustion, headaches, etc. I said no to the sleep study but agreed to oxygen monitoring and insisted on the Lyme test. Oxygen is dropping at night and I was positive for Lyme (ELISA and WESTERN BLOT).
She started with the 100 mg doxy, twice a day. By this time, I've already researched and know that this dosage is way too small. I double up on what she's prescribed and talk her into two more prescriptions. She won't prescribe any more. She knows nothing about treating Lyme and apparently isn't interested in learning. This saddens me because I've always had a good relationship with her and she has always been open to whatever I need.
I began the search for a LLMD in NC. I got several recommendations, called each and every one, all denied treating Lyme.
My former spouse had Lyme several years ago and was successfully treated by a LLMD in PA. I called and got an appointment with him, but not until November - UGH. My Dr did do the blood work for the PA LLMD.
I spoke with my Dr's nurse this morning. She said my DR did not interpret the blood work results but she did note that "most" everything was negative with the exception of Rheumatoid Arthritis!
I'm guessing that Lyme and RA overlap in some fashion? I haven't progressed to the point of any particular joint pain so I'm wondering if RA is something I really need to be concerned about. I already have enough to worry about <smile>
While I was taking the limited antibiotics that my Dr would prescribe, I really was starting to feel better. Leg/foot cramps were gone, the headaches were more tolerable, the feeling returned to the side of my face, the neck/shoulder pain was gone, the rib pain ceased almost immediately, my teeth stopped hurting, and I really was excited that I was going to "get better".
Now I sit in limbo - waiting for the November appointment and actually looking forward to the 1000 mile round trip to hopefully find relief.
Posted by Lymetoo (Member # 743) on :
I spoke with my Dr's nurse this morning. She said my DR did not interpret the blood work results but she did note that "most" everything was negative with the exception of Rheumatoid Arthritis!
--------------
I thought you were positive on the ELISA and WB??? "most everything was negative?"
I can give you a list for NC if you need it.
Don't give up until you get the Lyme adequately treated!
Posted by climber (Member # 26330) on :
I was also taken down the RA path before being properly diagnosed with LD. Until you confirm anything, consider avoiding meds. that could compromise your immune system like steroids or DMARDS. Many of those meds. are used to treat RA like conditions, but they can set a person back if they are dealing with something else. Good luck to you and find a great LLMD. climber
Posted by Feeling Bad (Member # 33833) on :
I was positive for Lyme on the ELISA and WB. I have that report and it's clearly positive for Lyme.
The ladies in my Drs office are lovely, but there isn't an abundance of ambition there - it seems they only do the bare minimum and I don't have the patience to deal with them right now. I think they only mentioned the RA because it was something "new" given the blood work requested by the PA LLMD. I asked them to send me a copy of the report and hopefully I will have that in a day or two.
Thank you for the input Climber. I don't have any plans to "treat" RA or anything else until I get to see the Dr in PA. I haven't taken so much as an aspirin since finishing the short treatment of Doxy given by my PCM. I'll tough it out until my appt in PA in November.
Posted by Igor's mom (Member # 29191) on :
If you can find a sauna or buy a relatively cheap FIR sauna on ebay that might help you while you wait. Or maybe epsom salt baths?
Posted by searching4truth (Member # 28481) on :
In May of 2010 I was diagnosed with Psoriatic Arthritis, which is very similar to rheumatoid arthritis. I was not diagnosed with Lyme until October of the same year. I was actually infected with Lyme in June of 1997. I was treated for psoriatic arthritis with steroids and chemo. By the time I was diagnosed with Lyme, my body had nearly shut down and the Lyme had all but taken over.
These drugs are like putting gasoline on a fire when it comes to Lyme. You are right to stay away from them at all cost. They nearly took my life. I have been treating Lyme for a year now. I take about 40 different medications and supplements, many of them are to reverse the damage done by the misdiagnoses.
Lyme does many things to our bodies, and survives by tricking our immune system into thinking nothing is wrong. When we get infected with Lyme, and our immune system cannot find the bacteria causing the infection, our immune system turns on itself, and attacks healthy tissue. This manifests as autoimmune diseases, rheumatoid arthritis being one of them. Psoriatic arthritis is another. So are Multiple sclerosis, Fibromyalgia, and many others.
So while you may in fact have rheumatoid arthritis, Lyme is actually the cause of it. So the goal is to treat the Lyme, and the autoimmune disease will subside. Do not stop until you find a doctor who will take this seriously. I searched until I found that doctor for me, and I am doing better now than I was a year ago. I am still very sick and have a long way to go in my recovery, but I am not on my deathbed any longer. I would have had a much easier time if I had never taken the steroids or chemo. I am happy for you that you did not make the same mistakes I did. Hopefully that means you are that much closer to regaining your health.