Welcome. Lyme disease is present everywhere. False negative tests are far more common than false positive tests. The testing is not that reliable. Less than 50% of people remember being bitten or have seen a rash. Lyme disease causes fibromyalgia symptoms and is often mistaken for it. This was the diagnosis I got even though I had the rash. Even if the rate is low in your state it is possible, or you could have been bitten while traveling to another state.
Doctors do not respond on this forum but there are members here with very good information. You can also check out our health pages.
I have heard many people with lyme describe a similar response from infectious disease doctors as you describe above. An evaluation from a doctor who specializes in this disease can be helpful for a correct diagnosis.
patsy10 gave you really good advice already.
I fully second the notion that if you want to pursue Lyme diagnosis/treatment, you should seek out a doctor that specializes in it.
I live in an area endemic for Lyme, and work on a campus with hundreds of deer, but I was also told over and over that I did not, nay could not, have Lyme by my regular physician and by various speciliasts (though I never went to an ID). I don't recall a tick bite or rash, and am not an outdoors person.
You say you tested postive several times. Do you know what kind of test it was? Was it an ELISA or a Western blot? I'm just curious.
Take care and be well.
Ditto to Patsy10's comment. She is very educated about this. youtube has some good info., on lyme disease patients. 'under our skin' and other you tube videos. It would be worth your while to visit the site. The sooner you get treatment, the better. A large
number of doctors and infectious disease doctors will do not want to discuss lyme disease. Please get some help. Best of luck to you.
My husband was diagnosed with lyme disease AND syphilis last September. The doctor says it is destroying his brain. He is now in a nursing home a complete invalid, must be bathed, shaved, fed, etc. He cannot walk. He is very shaky. His mind is VERY bad. Lately he has developed a very large tummy. So far the nurses have found no reason for it, but they say they are watching it. Could it have to do with his liver? Also sometimes parts of his skin turns a blueish/redish color., especially his right hand. Also his bottom seems to be dark.
He was diagnosed too late to treat it, so there is no hope for his recovery. I know he will continue to go downhill. We just do not know what will happen next, and what will finally take his life.
Any thoughts or advice?
I am very sorry to hear about your husband. I tend to disagree that it would be too late to treat his condition. I knew someone with Lyme who was in danger of organ failure and was prescribed IV antibiotics and is doing better. His mind was also very bad. You would need an experienced Lyme specialist to attempt treatment. Without any treatment, I believe he will continue to go downhill. This is just my personal opinion and I am not medically trained and do not know the full extent of his condition, but I don't like to see people give up.
I'm sorry to hear about your husband's condition. I agree with Ree -- I would look for a Lyme specialist for a second opinion.
If you search online for "LLMD Orlando", you will find a number of links to look at that other people have posted, also searching for a mid-Florida LLMD.
Best to you and to your husband -- let us know how you do.
All above are good answers, there are some very informed people here. We tend to have done more actual research than many other illness sufferers. I am very sorry to hear about your husband. There is a possibility that his condition could improve via IV antibiotics. I have seen/heard of people that were diaged with Lou Gehrig's Disease (ALS) that were bedridden and got better and even improved drastically. The "syphillis" diagnosis might have been from a band on a test, it could also indicate Lyme, depending on bands
The symptom of his belly being engorged COULD be from an Ascites which is where the liver is damaged and fluid cannot flow properly and it actually leaks out into the abdominal cavity. Just a thought.
I hope you find some answers soon and listen to the people here. We will be thinking of you.