Last Friday my husband called his family doc to find out what the results were on his IgeneX WB's ( posted in an earlier post and were IgeneX and CDC pos. IGM) The Nurse told him that the results were normal. We picked up a copy (luckily) and they were obviously pos. But the doc had written --Neg. activity to report--on the results. Well, yesterday we went to see him, like my husband wanted to. We walked into the exam room, and the doc said, "Teddy, why are you here?" He said "to go over my report." the doc said "what report." my husband said, "my Lyme report." The doc said "what about it?" I said "it's positive" The doc said " no it isn't" OK, so here I am sitting with a doctor who is looking at a report that clearly says positive IgeneX and CDC and explains on it how it is positive, and he is saying it's negative. I had called the IgeneX doctor last wed. and my husband had talked to him and the doctor told him that yes it was positive for Lyme and that by the bands he felt my husband had Lyme for over a year. I also had Dr J's report on how to interpret the bands. But com'on there was no need to have to interpret the bands, it said pos. right on it. the doc got mad at me and said he didn't need me lecturing him on IGG and IGM antibodies, when I tried to go over the report with him. My husband flat out said to him: You have been my doctor for 25 years, be upfront with me! And the doc said that he was unwilling to treat him, that he didn't want to get in trouble and didn't want anything to do with Lyme. He said he knows nothing about it and doesn't want to. As we were leaving I tried to give him Dr Burrascannos report and he said he didn't want it. I said, well what if you have other patients that may have Lyme, He shrugged his shoulders and said, oh, well. And he wouldn't take it. What the hell is going on? We are considered an endemic area now, we have had reports in our newspapers about Lyme, we were even mentioned in the PHA and we have a support group that started last month, and this doctor acts like he has no clue. The last time that my friends daughter went to see her pedia ( who diag. my son and her daughter) the CDC was there with another doctor who is anti-lyme, and now when my other friend went and asked for her daughter to be tested by Igenex, the pedia. said no. Our doc's are being threatened around here and it is very scary, who knows how many people have it in our town and aren't being treated. Sorry, this is so long, I'm just disgusted!!! My husbands doc wouldn't even put him on any ABX's at all, and he said that he wouldn't put in his file that he had Lyme, even though he finally admitted to us that my husband does! Now we have to wait to get into see an LLMD for 4-5 months!! It just makes me sick!! Well, sicker than I all ready am!! Sarah
I have heard some outrageous stories over the course of my struggles with this illness, but this on takes the cake.
I had similar experiences with 2 Infectious Disease Dr's when I was first sick, but mine was with Indeterminate Lyme results. (Now after treatment I test positive)
The indeterminates were on Lyme specific IgM bands and they both told me that I didn't have Lyme and refused me treatment.
I got progressively worse and was not able to find and LLMD for about another 3-4 months after these appointments.
When I was seeking my diangosis was before IDSA's new guidelines and the CDC recommend that Lyme be diagnosed based on clinical symptoms. I had almost every symptom.
Neither of those Dr's made reference to my Lyme results in the notes from the visit ( I always request copies ) In fact, none of the specialists that I have ever seen, and there have been a lot, have ever made mention of my Lyme results in their clinical notes.
I have often wished that I respectfully asked that the full nature of the things that we discussed in the visit be added into those notes and request that those Dr's can assure me that none of my further health problems could ever be attributed to their refusal to treat.
I wonder how willing they would be to do that. I have often seen these Lyme battles compared to the early AIDS battles. The one thing that we have gong against us is that the gay community was already very good at and very well prepared to advocate and stand up for their rights. We don't have that here and because of it a lot of people are suffering.
I hope your husband can find an LLMD and get on the road to better health.
Ticker. I have expressed this to him over and over and he isn't listening to me. I know first handed the effects that untreated LD can have on a person, and he should be running for the first LLMD he can get into, but he is not, and it is very disturbing to me. He deals with me and my son having it and he knows what can happen, and still he is saying oh a few weeks or months won't hurt. I told him, everyday counts. He is only looking at not being able to pay his bills if he takes off work. So, because my son was off his ABX's for a month I am giving them to my hsband. Yes, I know you're not suppose to do that, but at least I know that he is taking something while we wait. But I told him there is only a months worth and he must get to an LLMD before they run out. Men are so darn stubborn. and I can't beleive his doc wouldn't even give him a months worth of ABX's. Our wonderful LLMD's are pursecuted for treating us. And this doctor is ignoring a sick man who needs medical care, he should be the one losing his license for not treating someone he knows has a bacterial diease. I will get him to an LLMD one way or another!! Thanks for all your help. Oh and have you seen the Aug Public Health Alert? It has a whole section on Bartonella with pictures and all. My husband has most of the symptoms. And the strange rashes, discolorations, and skin tags. So we gotta get that checked to. Sarah