Topic: Suffolk County, NY -- what co-infections do you have?
Vermont_Lymie
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posted
Anyone else get a tick bite from the south shore of Long Island and know what co-infections they had?
I got lyme disease years ago from a tick bite in a very endemic area, the marshy tick-full coastal area near Islip on the Great South Bay of Long Island.
I had a high fever, bells palsy, strong headaches, complete fatigue, the bulls-eye rash, joint and mobility problems, and could not read, all within a couple of weeks of the tick bite, and though young, felt like I was dying. I got 11 days of abx for this and here I am on lymenet today. (did not know better at the time).
My llmd does not test for or specifically treat co-infections, so I am wondering if anyone else got exposed from this area and know what co-infections they have.
Thanks! And thanks to Char for this great idea.
Posts: 2557 | From home | Registered: Aug 2006
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Vermont_Lymie
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posted
Up for any Long Island exposures
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savebabe
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posted
I grew up on the east end of Long Island and did get bit in the area. I have been diagnosed with babesia, bart and lyme. I also know of others in the area who have been infected with these co-infections as well. Posts: 1603 | From ny | Registered: Aug 2006
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posted
Vermont, Also... If you need some names of LLMds in the ny area you can PM me. Sue
Posts: 58 | From NY | Registered: Dec 2005
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Vermont_Lymie
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Member # 9780
posted
Dear Sue and savebabe:
Thank you so much for your replies, I really appreciate it and it is very helpful. Sue, I will be sending you a PM for your llmd suggestion, many thanks!
Since I have never been tested or treated for co-infections, your experience is important to know. I was so very sick within two weeks from my first tick bite that it makes sense that co-infections were present. And after five months of treatment this year, some symptoms are just so persistent...And it seems likely that these things are geographically distributed in tick populations.
Anyway, thank you and my best wishes for your good health! Ella
Posts: 2557 | From home | Registered: Aug 2006
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posted
VM, as you know Im in the same boat as far as the LLMD not testing for co-infections.
My worst bite was from the marshy area outside the Quogue Wildlife Refuge.(PS was told it was not the lyme carrying kind, HUH?) The liklihood of these ticks carrying many co-infections is pretty high.
My last PCP said that some of the worst cases of Babesia he has seen are people from this area.
Dr. B treated many for Bartonella as well.
We are really in need of a Doctor in the NY area that will test people for co-infections!
Posts: 465 | From New York, NY | Registered: Aug 2005
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Vermont_Lymie
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posted
Hi Marsy: thanks for your post -- yes, you and I are definitely in the same boat! We will keep in touch, and any new information and doctor's visit that I have, I will definitely PM you about!
Sorry that we both have gotten bad info in the past -- Quogue, like the marshy areas just a bit east of there where I was bit, is terribly full of lyme-carrying ticks. As Sue said, they sure do not advertise that in the tourist brochures -- but should! My best, VL
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posted
Yup. I got bit on Fire Island (a barrier island off the South Shore of Long Island). I got to see the famous Dr. B a few times before he retired, and he did test for co-infections.
Came up positive for Babesia twice via IgeneX FISH test - but never had 'classic' Babs symptoms. Finished 5 months of Mepron and Zith, but no significant improvement.
I also tested positive via MDL pcr for Bartonella. Dr. B was really pretty sure I have Bart. (Gonna start Levaquin soon).
No Ehrlichia was found via any test.
So that's what I'm carrying from South Shore exposure. Hope this helps.
Just wondering did you have these tests before starting antibiotics? Should one stop antibiotics and then test?
Also have you found a good LLMD after Dr. B?
Posts: 465 | From New York, NY | Registered: Aug 2005
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savebabe
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Dr. B was the only doc left on LI that knew what he was doing. Now I travel upstate for treatment. Posts: 1603 | From ny | Registered: Aug 2006
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Vermont_Lymie
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Member # 9780
posted
We have a severe shortage of llmd's on long island -- strange for such an endemic area!
BorreliaBrain, thanks for your information. I hope you will keep us posted and that you get all better with treatment! (And you have one of the best names on lymenet, I feel like BorreliaBrain2)
Marsy, it might be worth a trip up to see Dr. L in Armonk (though, don't know if he tests for co-infections and quite $$$), or we are both gonna have to find out who savebabe and sue are seeing! Or, get ourselves out to NJ llmds...
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Just wondering did you have these tests before starting antibiotics? Should one stop antibiotics and then test?
Also have you found a good LLMD after Dr. B?
Oh I know. I ended up hearing so many Lyme stories just from our one little township. So I can't believe it took me so long to get diagnosed...
Yeah, I had most my tests before taking serious, long-term antibiotics - you have to ask your LLMD if you need to stop taking antibiotics before various testing.
I have not picked a new LLMD yet - the choice is down to two, Dr. C or Dr. H, both at least two hours away from me... though I do have a terrific MD in town who is pretty up-to-date on Lyme and is overseeing things for now.
That's where I am. My non-medical opinion is to go ahead with any kind of PCR or FISH tests - (RNA or DNA) based tests - without worrying about what being on abx.
savebabe
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Member # 9847
posted
After Dr. B I switched to Dr. H. It is about a three hour trip from eastern LI, but I am very happy with my choice. PM me if you have any further questions. Posts: 1603 | From ny | Registered: Aug 2006
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posted
I live in East Hampton, saw Dr B who diagnosed me with lyme, bartonella and babesia. I too now see Dr H , a three and a half hour drive. For my daughter we travel to Dr Jones in Conneticut. Since there are so many of us in Suffolk County why don't I hear of many local support groups? And yes, we desperately need a LLMD here. I run into someone every week who wants to see a lyme doctor and I give them as much information as I can, doctor to see, lab to use. Because of the distance needed to travel I think many people don't follow through! Karen
Posts: 82 | From east hampton ny | Registered: Jun 2006
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