You said: He was diagnosed with Lyme after 48 doctors, but then said all tests are coming back negative at the hospital...? Diagnosed on symptoms? Anyway...Lyme affects everyone differently. Although I have pain, it's not nearly to the degree your husband is having. I also have spasms & twitches that migrate (magnesium helps that). I have problems breathing at times and haven't been able to figure out what caused it at that moment. I suspect because my immune system is now "broken," it's caused my body to develop multiple allergies (never had before). I've noticed I have difficulty breathing after eating certain meals, so I suspect I'm having an allergic reaction to the ingredients in my food--I eat more at night, have problems breathing at night.
I've met people who've had such extreme pain, they couldn't handle even the mildest vibrations in their apartment building & stayed in the kitchen because the carpet made it worse, and can't sit in chairs or sleep in beds. What helped? Years and years of antibiotics (usually involfing IV), switching from different kinds and monitoring which ones worked best for them. If your husband is having a Herx reaction, it does get worse before it gets better and the Herx reaction cycles monthly (so I've heard). I don't get Herx's so it's easy for me to think, say, and fell "Great--I feel like ****, so it must be killing the little bastards!" It is true, but some people Herx so bad they can't handle the medication.
I suppose it's possible that your doctors might not be requesting the most appropriate testing either. Go to Igenex's website http://www.igenex.com/, and click on "What Test(s) to Order." They have a list of what tests to request, and compare them with your husbands lab test results & see if they covered them all. Also keep in mind that: unfortunately, there are some doctors out there that don't even know how to read the results, and different labs may have different "opinions" as to what the results are as well.
i was infected for at least one year prior to being disabled by "lancinating pain", pain like being stabbed with a lance....I was seen by a bunch of specialists for another year before a friend suggested lyme. I found a family practice doctor who didn't laugh at me. He diagnosed me, a clinical diagnosis. Yes, he diagnosed me based on symptoms, history (where I had lived), everything else being ruled out, and my response to the antibiotics. In the ten years since, I have repeatedly been tested for lyme and coinfections. I have been tested by the respected labs, the best labs and the crappy local ones. I have NEVER, I repeat NEVER tested positive for lyme. This is possible due to a small portion of us being "seronegative". All I know is, I almost killed myself at the prospect of my life being the wayit was, but I hung on, endured about six years of oral antibiotics and funny, I was treated as if I had lyme and I got better like I had lyme....
Remember, if you begin treatment, antibiotics and get really really really sick, that is a good thing. You have lyme and the buggers are being killed and poisoning you. I had to keep telling myself it is a goodthing. it is a good thing.
I kind of look at lyme as cancer. We treat it. We kill all we can find. Then there is remission. I don't trust that I will ever be cured.
About five years ago I stopped treatment, because I didn't need it anymore. About a year ago, I developed a pins and needles sensory neuropathy. My doc doesn't think it is lyme. He doesn't know what it is. Nobody does....so i keep on trudging....intent on finding the answer, treatment and cure.
Have you visited lymenet flash discussion board? Lots of good people there.
i have chronic lyme much like your husband
check out lyme.net for info and support
i had and still do have breathing issues
u need to treat lyme and possibly babesia, bartonella, and other tick borne
diseases he probably has if he does in fact have lyme.
the only reliable test is from igenex.com