ok,i'll try to give enough background to help you all.
I am a Surveyor. I have spent most of my life outdoors. ticks galore but we have the big "dog" ticks here. never a rash but have had to remove some ticks but not in the past couple of years.
in June of this year i was working in charlottesville VA and noticed some of those period size ticks that we all have come to love so much on my hands...crawling, not embedded but my gosh they were little and how the heck would you even know if one was embedded?
in Aug of this year i started having joint pain in one shoulder...mild no big deal.
within a month or so it spread to the other shoulder and both hips. It then went into my bicep tendons and hamstrings then knees and finally my wrists.
I do not have a PCP so I went to the local "quick care" (snot shop)and had them run the usual battery of tests for arthritis
My wife is an RN who sometimes starts IV's for a rhuematologist (man i wish they had spell check on here)suggested this logical approach.
I threw in a Lyme test not knowing anything about thr difference in a titer or a blot not to mention different labs. It was negative.
Hmmmm, time to hit the internet My wife and I both did research and came to the conclusion it was Lyme and after searching and reading this site decided to get on some Doxy and quick which I did on oct. 24th this year.I also found the closest LLMD but could not get in until Dec 21st.
in the mean time he sent a barrage of bloodwork to have completed which I did. they told me to go through my local lab (labcorp)for everything including the Western Blot.I had been on 100mg Bid doxy doubled it after two weeks and even did one week at 300mg bid I had one band (58) show up. I kept a diary of how I felt, when I felt it...etc.
I make the 3 hour trip to the office and the nurse begins asking the usual questions bla bla.. i told her about the Doxy and she rolled her eyes and said "you have been on the internet haven't you"
the Doctor spent maybe 15 to 20 minutes with me. he asked me why i thought i had Lyme. i told him because we pretty much ruled everything else out.
he didn't look at my diary. went through my test results so fast a speed reader would be jealous and put me on 100mg doxy 3 times daily.
I asked about the cyst forms and as an afterthought put me on 250mg Flagyl 3 times a day to take with the Doxy. he pretty much called Dr. B a crook who no longer has a license and told me to stay off the internet.
I go back in 5 weeks..... maybe Posted by gwb (Member # 7273) on :
I would suggest you change your "maybe" to "no way". If it was me I'd get a new LLMD. He sounds pretty incompetent if you ask me.
Gary
Posted by farraday (Member # 21494) on :
Strongly agree!!!!!
Posted by jenny76 (Member # 18205) on :
Strongly agree with Gary here! What does your gut tell you about this guy? I'd say go with your gut!
Posted by joalo (Member # 12752) on :
Are you sure this doctor is lyme literate? It doesn't sound like it to me. There is no way I would go back to him! Posted by street129 (Member # 23472) on :
he sounds like my regular PCP dr. to me.
Posted by HaplyCarlessdave (Member # 413) on :
oops lost most of the post..will try to redo...
The 'doc' you describe was more competent than the doc I first went to for Lyme, but that's not saying much! For me, this incompetence increased my length of treatment BY AT LEAST TWO YEARS! It ALMOST caused me to be sick the rest of my life! But that first doc was excellent for every other problem i took in! This because this incompetence has more or less been written right in to much medical 'literature.
So I also would say don't spare any effort to find a real LLMD! (Lyme-literate M.D.) BCDaveS
Posted by HaplyCarlessdave (Member # 413) on :
Also, the usual test are notorious for their inaccuracy. Given the sequential symptoms you describe, along with the location and your other observations, it appears to me that the probability that you have anything but Lyme is zero. One big concern is the possibility that you picked up one or more coinfections, as well as Lyme. These can make the illness far more serious. An LLMD will be able to address these posibilities, and may be able to get you more sensitive tests, too. It's usually worth it. BCDaveS
Posted by AnnaL (Member # 18464) on :
Johnny,
As Dan Savage would say, DTMFA.
Posted by Robin123 (Member # 9197) on :
Well, he did something with you as in some testing - band 58 is a Lyme band - and put you on some meds - that's more than many will do.
But he will not bring you the rest of the way. For that, you need an LLMD. You can post in Seeking A Doctor for one in your area.
IGeneX is an excellent testing lab. They will send you a free testkit. 1-800-832-3200. That's for the IgM and IgG western blot antibody tests.
They can also test for co-infections. Babesia, bartonella, ehrlichia - you can look them up and see whether you think you match any of the symptoms.
Even so, not all testing shows positive even when folks have the infections. That's why they're treated clinically, by history and symptoms, which you have.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by HaplyCarlessdave: For me, this incompetence increased my length of treatment BY AT LEAST TWO YEARS! It ALMOST caused me to be sick the rest of my life!
That's the biggest reason to find a real LLMD!!!
Posted by motownlyme (Member # 11485) on :
I sent you a PM
Posted by coltman (Member # 21272) on :
I wouldnt trust him very much because of his attitude. Burascano made best abx protocol for lyme to date, Imho calling him a crook is pretty ignorant. I am surprised though that the dose is of abx he gave you is pretty close to adequate. Not saying its a good overall treatment plan, but more than most pcp would do
Get Igenex WB and then decide for yourself
Posted by karenl (Member # 17753) on :
I am now on flagyl 250 3 times a day and feel so much better after few days. Give it a try.It also works for other parasites.
All doctors are afraid of the internet even Mayo, Hopkins and Cleveland will tell you to never read on the internet.
Posted by Pinelady (Member # 18524) on :
I agree you need a LLMD. They have a method to the
madness/meaning drug dosages and protocols.Always
get copies of all tests performed and pics of any
rashes. Prayers.
Posted by massman (Member # 18116) on :
What about the LLND that was recommended ?
Posted by Amanda (Member # 14107) on :
Well, there are different protocols, even among the LLMDS. Some treat with higher doses of drugs than others. And not everyone has to like Dr. B.
Having said that, I would get rid of this doc based one two things. One, testing is notorisouly deceptive, and is why you need to get blood drawn by a lab that specializes in tick diseases (there goes labcorp and quest). You can come up negative even on the specialty lab tests and still have lyme.
Two, lyme is very complex, and many of us also end up getting more than lyme infections from a tick bite. You have some symptoms that sound like bartonella, and then there is Ehrlichia, babesea and a host of other biblical sounding diseases. It takes a good lyme doc AT LEAST, an hour on their first visit to sort through all that. This MD didn't give you the time of day. I'd keep this guy just long enough until you can get in to see another LLMD.
Oh, and by the way, one thing that can happen is you can give a pateint short, low doses of abx, which doesn't get rid of the disease, but can prevent you from coming up positive on a test...
Posted by johnnywv (Member # 23012) on :
massman,
who was recommended? I found this guy on the internet. there was only one more in WV and she wasn't taking new patients.
thanks, Johnny
Posted by Leelee (Member # 19112) on :
I agree with everyone else who has already posted. I don't think this is the right doctor to help you and it sounds like you have Lyme to me.
Can you travel? I can recommend my LLMD in MD if that's a possibility. Not sure where you live in WV, but some parts aren't so terribly far away from MD.
PM me if you like.
Posted by METALLlC BLUE (Member # 6628) on :
quote: Well, there are different protocols, even among the LLMDS. Some treat with higher doses of drugs than others. And not everyone has to like Dr. B.
Not liking Dr. B is irrational. The guy was nothing short of the embodiment of kindness and intelligence. That's like saying Dr. Jones is a crook and we all know the type of people who says that. (cough.....shapiro, cough).
Posted by motownlyme (Member # 11485) on :
This Doc is supposed to be an LLMD and is on the list. I saw him for a short period of time. I didn't stay long.
I saw a wonderful 2 week improvement. Due to bad weather I had to reschedule the appointment that his nurse had previously rescheduled (hence 6 weeks instead of 4 1/2 weeks between appointments).
He refused to renew my ABX RX for two weeks since I couldn't make the appointment his office had rescheduled. I lost all that I had gained plus more in that two weeks.
I was very frustrated since I had had the improvement and was just ignored when I called to beg for them to call in an RX. We made the decision to move on after he rushed us through my next appointment - which lasted all of ten minutes. We had lots of questions and he just said he had to go. We thought he meant he had to go get the phone or something, but nope, he was just gone.
I should add that there was much more, but this was the final straw. He will treat and he will prescribe antibiotics though. He is up front about the fact that he dislikes treating women. His comment to me, " I'd rather treat 50 men to every one woman."
[ 01-02-2010, 01:43 AM: Message edited by: motownlyme ]
Posted by massman (Member # 18116) on :
Check your PMs
Posted by johnnywv (Member # 23012) on :
thanks everyone for your help and support!
I am seeing some progress because my wife and I were smart enough to get me on antibiotics when we first supected lyme.
I owe a lot of what I learned to the good people of this site. My heart and prayers go out to each of you and everyone else who has to deal with this crappy under rated, ignored disease.
to each of you I say: be strong, be bold and be confident in a full recovery. this is but a trial and will pass.
Posted by lymewreck36 (Member # 4395) on :
Run Away from this doctor as fast as you can!!!!!!
I had a "llmd" in Alabama that appeared lyme literate, but wanted to pull treatment because "he didn't intend to be brought up on charges again for treating lyme too long.."
Find a doctor that will treat you by listening to your symptoms....not just look over your blood work in a hurry and think all illness can be measured in your blood work.
It will take time for doctors to realize that "evidence based medicine" can include patient input. Until then, we must persevere.
Best of luck, Mary
Posted by METALLlC BLUE (Member # 6628) on :
Lymewreck, who was the doctor in Alabama? PM me?
Posted by lymewreck36 (Member # 4395) on :
HI Metallic Blue. I sent you a PM.
Take care, Mary
Posted by sutherngrl (Member # 16270) on :
Please don't say bad things about any Lyme docs. We only have a very few in the deep south.
This statement by lymewreck could be very misleading and cause some ppl that can't travel to miss out on very good treatment.
I see a lyme doc in AL that is absolutely awesome!
![[rant]](graemlins/rant.gif)