Is it lyme or not??

I have been supposedly diagnosed with lyme and other co-infections for over two years. I have not started treatment due to my mothers failing health last year. She passed in September 2014 so it was time to look into mine, seriously. I can get no care or diagnosis in NV so I went to UC Davis in Calif... another bust. Then I found one of the best diagnostic and LLD treating physicians in San Francisco, Dr S. He looked at my one positive Igenix test (non CDC positive) and did some question tests along with my history and the fact that I could'nt walk right or remeber anything for more than 5 seconds, or tolerate the pain I was in and said you most assuridly have late stage neurologic deseminated lyme disease. He confirmed the Igenix test after 1 moth and sent me for Spect scan (which came back awful) and wanted to start heavy anti-biotic treatments and stuff to keep me out of the emergency room every other week. The co-infections came back neg (he was surprised at that) but still said this is what you have. Two months later I saw a specialty clinic in NY that is part of Columbia University to make sure everything was in fact correct and they checked to make sure there was nothing overlooked. I'm waiting for my results and my consultation, but they weren't positive it was lyme (or JUST lyme). I am so confused now! Is it or isn't it lyme!!? Everyone anywhere in the lyme comunity knows Dr. S. in San Fransisco as one of the top lyme dr.s and said he would know... other drs. agree with him...but so many things come back neg on the tests. Has anyone ever had this kind of thing happen?

Post Edited By Moderator (Girlie) : 6/26/2015 11:22:04 AM (GMT-6)

Hi Rajaenchen, welcome to our community!

I edited your post to take the LLD's name out...we can use initials only...to ensure the LLMD's privacy.

First - LLMD's are specialized in diagnosing and treating lyme disease. So, I wouldn't listen to another Dr. who doesn't know much about Lyme disease.

Second - testing for lyme and co-infections are not reliable/accurate. This is why a LLMD's diagnosis is so important. They will look at the whole picture - your history, symptoms, where you live,etc. whether there was a tick bite and/or bulls-eye rash...and then clinically diagnose you.

I think it's time for you to get treated for lyme disease.

When you have time, take a look at the thread at the top of the page titled "New to Lyme?..Start Here!" It's got a lot of important information...including the section on detox. Detox is something that you need to employ - several different detox methods when you are battling lyme disease. Detoxing will help flush out the toxins created from the bacteria die-off. This will help to alleviate the resulting increase in symptoms.
I'm sorry about your mother passing....hugs to you!

Do you have another appointment scheduled with Dr. S.? If not, please make one.

I'm sorry about your mother. It's hard enough going through a loss like that, but even harder when we're suffering with lyme disease. Hugs to you!

Lyme disease can mimic lots of things, including lupus. I don't think you have Lupus, I think you have Lyme.

If you haven't done this already please use this link to find a LLMD near you:

http://ilads.org/ilads_media/physician-referral/

raja - no need to apologize. Many of us have or have had cognitive issues with lyme.

The "New to Lyme" thread is at the top of the page...It's a 'sticky' thread and is always at the top.

You can only read there - no posting.

Is NV - Nevada? (Sorry I'm Canadian). If there aren't any LLMD's in Nevada, would San Fransisco be too far to travel?
If you are looking for one closer, just start a new thread titled: "Looking for LLMD near _____" and insert your city and State in the blank.

Thanks for the advice of looking for LLMD on a new thread. Yes, it is Nevada. Mostly The Dr. in S.F. is worried about me traveling with a possible complication to his clinic 5-6 hrs away. He has a hospital that will do the pic lines, but he really discouraged me from doing that outside of an hour or so drive.

Hi Rajaenchen,
Welcome to our community!! I'm so glad you found us!

First of all, I'm so terribly sorry for your loss of your mother. I'm sure that it hit you hard both physically and emotionally.

If you haven't found a LLMD to work with yet, I actually have names and contact information of a few doc's in Nevada that might be able to help - they aren't LLMD's as far as I know, but they are Lyme friendly and may be willing to work with a LLMD to help you get well. You can send me an email to request this information - just be sure to include your state so that I know what area you need.

I also wanted to mention that doc's that don't know what they are looking at when it comes to these infection frequently diagnose things like Lupus or MS - it has a lot to do with the inflammation that is in our bodies, but it's still a misdiagnosis.

Testing for Lyme and any of the other infections that are frequently present are really quite inaccurate in that they miss a lot of those with the infection. Part of the reason why is because Lyme inhibits the immune system - so it can't respond by producing the antibodies that these tests rely on - so we get a lot of false negative, but rarely see a true false positive.

We are here to help you find your way through this whole thing!!

And by the way - you should know that I healed from a 40 yr old Lyme infection with herbs only - so the LLMD that said you can't heal with alternative medicine just doesn't understand.