Cmac3721 Posted October 20, 2013 Report Share Posted October 20, 2013 Hi I have has pots for about a year and a half now, and I just tested positive for Lyme anti bodies about 2 weeks ago, the infectious disease dr said that there is a chance that Lyme could cause or make pots worse he thinks I may have had it for awhile. Is their anybody out there that has Lyme that developed into pots, because he didn't have much treatment suggestions other then the antibiotics I already took. I feel like I'm not being aggressive enough with this and maybe if I go after Lyme more it could help my pots. Not only that but what if pots is a manifestation of late Lyme disease or something like that. I feel like I have a piece to the pots puzzle here or am I reaching? Quote Link to comment Share on other sites More sharing options...
badhbt Posted October 20, 2013 Report Share Posted October 20, 2013 I don't think your reaching at all. You just jumped in my boat . I am curious did you test positive through standard lab testing or did you go through a different lab?I tested positive through Igenex, but negative through standard testing. Lyme is definitely on the list of causes of Pots. What regimen of antibiotics did you take? Did it seem to help your symptoms? Also what part of the world do you live in?Sorry for all the questions but I am like you trying to get as much info out there as I can. Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 20, 2013 Report Share Posted October 20, 2013 I tested positive for a Lyme coinfection, babesia. You could go to the ILADS website to get more information about treatment of advanced stage Lyme and finding a Lyme Literate Doctor. Lyme is definitely on the lust for causing dysautonomia as it is a bacteria that can infect the nervous system. Quote Link to comment Share on other sites More sharing options...
Cmac3721 Posted October 21, 2013 Author Report Share Posted October 21, 2013 OK i went to a regular infectiuos disease doctor, and the blood work was done at quest diagnostics I'm insure which lab it was sent to, but they said my disease isn't active right NOW, but I had lyme antibodies present I'm not even sure what this means or what to do about. The antibiotics made me feel a little bit beffer but I think I need more extensive action, my stomach has slowed down too and I heard lyme can cause gut palsy. I still eat ok but have def dropped weight over the years, what actions can I take and do any of these lyme litterate doctors deal with pots. --- Somebody let me know PLEASE. Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 21, 2013 Report Share Posted October 21, 2013 I think the connection between Lyme and pots is relatively recent so I don't know if you'll find a doc that is highly specialized in both. A Lyme Literate Doc is likely to do additional testing, additional antibiotics(non-LLD docs mostly subscribe to short term antibiotics,LLDs tend to use much longer term antibiotics), and they will most likely subscribe to dietary changes and potentially some homeopathic treatments. Quote Link to comment Share on other sites More sharing options...
Cmac3721 Posted October 21, 2013 Author Report Share Posted October 21, 2013 Can pots get better if your aggressive with the lyme? Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted October 22, 2013 Report Share Posted October 22, 2013 Can pots get better if your aggressive with the lyme?I think the answer for some may be yes for some people. I follow someone who has Lyme and also has/had POTS. She has tried several treatments and with her most recent treatment, she finds many days she no longer has POTS! Here is her blog: http://decimawho.wordpress.com/I've done quite a bit of research into Lyme disease. If you only had the ELISA test, you might want to consider asking for a Western Blot. A traditional, run of the mill Western Blot would be better than only getting an ELISA which by some estimates, is only 50% accurate. The common protocol is if the ELISA is positive, a Western Blot is run. If the ELISA is negative, end of story. Many people suffering from Lyme, as well as Lyme Literate Medical Doctors (LLMD), are strong proponents of getting an igenex (name of the lab) Western Blot test for Lyme. The traditional Western Blot doesn't check for as many bans as the igenex. There is huge controversy over whether these bands are significant or not, and I'm not going to get into my thoughts, but I just wanted to clue you in. Often, LLMDs don't bill insurance. Since the government doesn't recognize Lyme as a chronic disease (it is typically believed it can be completely taken care of with a few weeks of antibiotics), often insurance won't pay for treatment and doctors have even lost their license for treating it as a chronic infectious disease.If you're wanting to learn more about Lyme, I recommend watching youtube videos. Of course don't take everything on youtube as fact and fact check with a reliable source, but there are many well put together videos that can explain the ropes of this complicated and controversial disease to you! Quote Link to comment Share on other sites More sharing options...
Cmac3721 Posted October 28, 2013 Author Report Share Posted October 28, 2013 Man I'm confused if Lyme is a factor or not, I tested positive for the antibodies but negative for the western blot. Quote Link to comment Share on other sites More sharing options...
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