Ruling out Lyme

Hi all,

Forgive me if this has already been answered – the computer is my biggest trigger so I definitely didn’t go through all the posts - But I am trying to wrap my head around all this information about Lyme disease given that there are a few people on the boards who are just figuring out that this is behind their symptoms. I had a lyme test done early on and it was negative so I never thought twice about it. However, it sounds to me like that was also the case for some of those Who now have a lyme diagnosis? I live in a very endemic region for Lyme and certainly could have been exposed to ticks on more than one occasion. Not that I am looking for other illnesses, believe me, I just want to be sure I am Pursuing the correct treatments, considering I have not had much success over the last three years. Could somebody tell me what test specifically they got for the Lyme diagnosis and how you know if you’ve gotten the correct one that is sensitive enough?

Thanks,
Adrienne

Hi Adrienne,

It’s a contentious issue. Some will tell you that some tests are not sensitive enough while others will tell you that you should use Igenex. It’s expensive and seems to churn out non-stop positive results (I have not heard of a negative yet). Igenex is not supported by some doctors and the company were investigated by the FDA and subsequently cleared, so I’m told.

If you have a clear migraine (vestibular migraine) picture to your predicament and you tested negative previously to Lyme I would be VERY skeptical that there was Lyme disease going on. I’m sure the Lyme advocates here will tell you otherwise though. If I were you and if it’s a big concern despite previous test results showing you a negative result, I’d consult your doctor and ask him about it. Why he is confident in the migraine dx (e.g do you have good clear migraine indicators)? Is it possible that Lyme was missed by the test? Does he support the Igenex testing? In my opinion these people are the professionals and you should let the health professional who knows you best guide you on this and not be swayed by internet hype.

Scott 8)

Thanks for the info Scott!

Adrienne,

This is the farthest thing from “internet hype.” All I can say is I urge you to read through my posts and look into Lyme. There is so much to read and learn about Lyme. I am here for you should you have any questions. I know we have messaged along the way.

Lisa – while I realise you have become a strong advocate for Lyme disease I think you should at least be handing out advice with the disclaimer that people seek the guidance of their physician if they choose to pursue this. No one should be making decisions based solely on what they read online or what someone tells them on a forum.

Scott

If you thoroughly researched Tick-Borne Disease you would understand that most physicians are not trained to understand Tick-Borne Diseases. My husband - a neurosurgeon - sure was NOT. Until you take the time to thoroughly research Lyme, we cannot engage in an informed discussion.

It goes without saying that people do their homework; however, reading between the lines you suggest that people go at this alone and that health professionals have no idea about Lyme disease. And that by watching internet videos and reading a number of papers online that you can then go on to fight your Lyme disease.

As stated in the forum Constitution patients should NOT solely take treatment advice and recommendations from other patients on a forum based upon that person’s own experience. This is NOT best practice as your husband would be the first to acknowledge. Everyone should discuss any treatment advice with their own physicians. Period.

DizzieLizzie is an excellent example of someone consulting their physician and approaching this diagnosis with her head screwed on straight. Some of you could learn from her example.

S