posted
My brother has been unable to walk upright for about a year and has been to about 15 "specialists" finally got a "+" Lyme test from Igenex about 3 months ago. He was started on 200 Doxy/day by an ID on S.I., NY. His foot blew up (Probably Herx) and he was put on Amoxicillin for 10 days for that. Thought it was an unrelated infection.
While on the Amox. he was actually able to walk almost upright w/o pain for the 1st time in almost a year.
He then went to Dr. A.G. in NJ (ILADS MD?) who put him on 300mg Doxy and wanted him to take it for 6 wks. before she drew PCR to send to MDL. Again, his feet (this time both) blew up and were so-o-o painful. He also got alot of knee pain which he never had before.Definitely a bad Herx which improved after a few weeks, but his back never improved at all and seemed to get worse the longer he was on the Doxy.
After about 7 weeks, she sent the blood to MDL for PCR. It took 3 weeks for results and today Dr. G's nurse or secretary called him and said his tests were negative and asked how he felt.He said he felt no better and she reiterated that the tests were negative and he got the feeling he was being blown off.
I thought Dr. G was a LLMD. Do you think she would put that much weight on the PCR? My sister-in-law said she told them it would tell what stage of LD, what strain and how he was responding to TX and what ABX would work!!!! Is that possible???
Also, she told him on his 1st visit that Amox. doesn't work for Lyme ???
Posts: 16 | From Canaan, CT, USA | Registered: Jul 2004
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
a pcr test is like taking a sample from a swimming pool...you can put a bucket of ping pong balls in the swimming pool and draw out a cup of water, and you may or may not get a ping pong ball in that cup of water....doesnt' mean the ping pong balls arent' in the water, just means you didnt' get one in that sample of water!
same with the blood they draw. that particular sample of blood didn't have any of hte lyme or bart or babs in it, that's all...sometimes you have to draw wht they call 'serial pcrs' or 5 or 6 weeks in a row, to try and 'catch' the bacteria in a sample...one try does NOT mean you dont' have it..and any GOOD LLMD knows that! pcrs are picking up actual pieces of the bacteria, NOT searching for antibodies like the western blots done by igenex..it's a totally different test...
This does not sound like an llmd to me. You base lyme treatment on symtoms according to the cdc, not on testing...you also already have a positive igenex test..pcr's are usually more reliable for coinfection testing anyway...not western blots...
hope this helped explain it..now explain it to the doctor too, and he'll learn...
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
Amoxy didn't work for me, but I know it has for many here. Lisa explained everything very well. Either keep searching for a good LLMD, or have an indepth talk with this one.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Amoxy does kill but what dosent die turns to cyst form. Also amoxy works on other coinfection. Was it Dr saying that stuff or was it a nurse?
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Lyddie
Unregistered
posted
When amoxy is used fr Lyme it is used in very large doses. Ithink I took 3 grams, which would be ten times the 300mg- right? Look up Art Doherty's site on amox.
For me, amoxy worked some with Biaxin but didn't do much on its own. But it greatly helped my daughter, although when she went off it she relapsed almost immediately.
As for the PCR, all the doctors we have put no stock in negative PCR's. It's always worth a try to get a positive, but a negative doesn't mean much, we've been told.
posted
Thanks for all your feedback. I was waiting to see what the Dr. HERSELF would say about all this when she called my brother herself as her secretary said she would!!! My brother tried to get her X2 and was told she would call him.He waited since last Wed. and finally called her office again today.
Her secretary told him she was NOT going to call him back.She said his tests were negative, he did NOT have Lyme anymore. She said Dr. G wanted him to STOP the ABX and gave him the name of a back specialist to see.He has already been to many back "specialists" who could find nothing wrong with him.He's had MRIs,Bone scans, EMGs, myelograms, etc. and the only positive test he has had was a WB from Igenex!!!
I feel terrible since I suggested Dr.G from recommendations on her and because she was past president of ILADS !!
He told the secretary that he thought a neg. DNA test was not uncommon and she sort of cut him off by saying that Dr. G was a "Primier" Lyme specialist (cost him $600 for 2 visits-the second at $200 just to draw the blood for the PCR and another WB with MDL) and that he should follow her advice!!!
If I didn't know better, I'd think they went to the wrong doctor.
Just wanted to vent a little. The poor man doesn't know where to go from here!!
Posts: 16 | From Canaan, CT, USA | Registered: Jul 2004
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I've heard good and bad about Dr. G but if you don't like what she said by all means get another opinion from another LLMD. It is unfortunate that you wasted time and money but with a + WB (I assume, but you didn't say) from IgeneX, I think LD must be considered.
A PCR test if positive is very valuable but a negative PCR is almost meaningless if you still have symptoms.
NJ LLMD's are currently being scrutinized by the State Medical Board for the over diagnosis and over treatment of LD. Dr. G works with Dr. F who is currently being investigated.
Perhaps she is just being cautious with the patients that she takes on because of the scrutiny? Just a thought.
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