no doctor support, HELP!

My husband recently was tested for lyme- it came out negative but we're almost 100% that he has it. His Doctor on the other hand says the test is accurate and she doesn't know what to do for him...we are in the search of a lyme literate doctor after that- in maine, if anyone knows one.

Here's his story. I would like to know if anyone else has some or all of these symptoms and what has helped get them through it?

He got a tick bite in may. A rash (was a circle but no ring around it) in july. In early oct. he got severe leg pain and numbness so went to the docs. She put him on doxycline for 29 days. His symptoms began to get better but worse again after 2 weeks off the antibiotic. Now he is getting floating in his vision and poor perpherial vision. He also says that he often feels there's stabbing needles in his muscles. The aches seem to move from one part of the body to the next daily. Extreme fatigue is another major symptom.

Would appreciate any stories, help or just plain support! Thanks so much!

Hi Lost,
I live in Maine. There is a great support network for Maine Lyme Disease on Yahoo groups. They can help steer you to doctors depending on where in the state you are. Where are you? Maybe I can help you as I know some docs who would give the right test.
Unfortunately, your husband's story is all too common.
Lillimul

I live with Lyme in CT and I know what your husband is going thru. Lyme is very very debilitating in mid-later stages. He needs to rest as much as possible along with light exercise, good diet and good sleep. You guys should watch the movie "under our skin". If you goto youtube.com and type in under our skin you will find a preview of the movie. I might even be able to shoot you over a DVD. I go thru the same things with my non LLMDs. The Elsa and the WB are NOT accurate tests and most Drs still do not even know it! That is what they are trained to use to diagnose lyme. In fact most lyme literate Dr's can and will diagnose based on overwhelming clinical symptoms alone after ruling out other causes. You need to find lyme literate Dr's. I think I can help you guys, I am going to include strong evidence that your Dr will have a hard time refuting. Be careful though, they are not usually too happy to get educated by a patient even if they are correct but in some cases that is what it is going to take. You need to be your own advocate and sometimes even your own Dr. Please feel free to get in touch with me if you would like more help, I will do whatever I can. My email is porterzcustomz@comcast.net I have been in the battle for 6 years and counting. I have been researching this for quite some time and when I get 100% better I would like to goto medical school to be a Dr. I have seen too many good people being swept aside by the system and I am out on a mission to put a stop to it!!

Please watch this news clip on inaccurate testing.

http://www.youtube.com/watch?v=gTSXQfPI19c



Here are some good solid sources on how inaccurate lyme tests are and the great controversy. The first link is from the FDA, the second is from the Attorney General!!


http://www.fda.gov/medbull/summer99/lyme.html

http://www.ct.gov/AG/cwp/view.asp?a=2795&q=414284


http://general-medicine.jwatch.org/cgi/content/full/1989/1226/1

hi Lost,
Your husbands symptoms and experience with the ignorance of doctors is very familiar. I printed out Dr. Burrascano's treatment protocol (which is on here or you can find it on the web) and took it to a new doctor. I told him that I had the rash which is 100% diagnostic of the disease. Don't let anyone give you the run around. He needs abx as soon as possible. The fact that he got better on the abx and then relapsed soon after quiting them is another indication of lyme. When you first start the abx you often have a herx reaction (feeling worse) , so expect this to happen as he is more advanced now. This is something that you have to battle - a marathon, not a sprint. You don't want to also be in a battle with doctors who don't know how to treat it. Someone I met where I live was told he could not still have lyme after a short course of abx (he tested positive) and is currenlty being treated for RA and on steriods - which destroys the immune system making it virtually impossible for him to fight the lyme bacteria. You have to be proactive and very careful. Some of us are on our own.