Do I even HAVE Lyme?

I've been chasing a mystery illness for the better part of 25 years.
I have tons of symptoms, but only a few definitive diagnoses. I've researched Lyme for several weeks now, and I have more than enough symptoms to suspect Lyme - I looked at the "New to Lyme" post and can say yes to 70-80% of the symptoms on the list. But, most of my symptoms come and go and vary in their degree of intensity. My age and genetic makeup also cloud the issue.

I have an appointment with the closest LLMD I could find in December. He's 3 hours away, and yes, that was his earliest available appointment. I'm also contemplating trying to get the Western blot done by Igenex. However, I've read several sources that say that the currently available tests are unreliable. Even Igenex's Western blot has up to 40% false negatives....

My biggest concern after visiting doctor after doctor for decades is that any LLMD I go to will interpret all of my symptoms as Lyme and won't look for other causes. Transversely, most regular doctors I've seen have never mentioned or considered Lyme as a possible cause...

I do not want to put my family thru the expense and hassle of Lyme treatments if I don't have it. But, if I do have it, I'll probably seek treatment because I don't want them to keep living with my erratic and varying degrees of disability.

Does anybody else resonate with this particular catch 22? Any ideas?

Get hold of your medical records and take them with you when you see new doctor. I have a binder that has all me bloodwork for the last 5 years, plus MRI's, EMG, Neuropsych and etc test results. I don't go to the doctor without the binder. That way nothing is overlooked.

I just watched a very informative video that may help answer your question about lyme.


http://www.livestream.com/skidmorevideo/video?clipId=pla_6e766799-727a-467e-872f-c1936459b2bf&utm_source=lslibrary&utm_medium=ui-thumb

Skip to the 20 minute mark (approximately) when Dr. Horowitz steps up to deliver his speech. He talks about lyme as being a MSIDS - Multiple System Infections Disease Syndrome.

Basically, he explains that Lyme is very rarely just lyme.

He talks about an approach to MSIDS that deals with all issues we face.

1. Treat: Treat the 3 I's. Infection, Immune system issues and Inflamation.

2. Support: Detox pathways, hormone balance, nutrition and address any food allergies.

... This is just a brief summary of a few of the things he talks about, and it really makes sense of the mysery and mystery of managing, treating, and suffering from lyme and coinfections.

He also talks and explains about how CCFS, FM, MS and so on are or maybe linked to lyme as a MSIDS.

Here is an article written by Ginger Savely titled "Everything You Wanted To Know about The CD 57":
www.researchednutritionals.com/information.cfm?id=200

While most articles will say that it's a reliable marker for those with chronic Lyme, I have seen people who were really, really ill with Lyme that had CD 57 counts near 60, while others who have less and less severe symptoms have had CD 57 counts as low as the upper 20's. So take your CD 57 counts with 'a grain of salt'. Although, once you have the test and find out where you are, then you can track your progress by the numbers!

From what I've read, Lyme Disease, viruses, HIV, and mercury toxicity have to potential to lower the CD57 count.

Hope this helps!

Regarding my last post. ***The most important thing to remember, is never take the advice for any "idea" from only one person. Make sure you get a consensus from others or a moderator that are more informative than rookies like me. I was just throwing it out there for something to think about.****

Hi jwjjtt,

I just wanted to share my experience in dealing with a LLMD. I was EXTREMELY hesitant to see one initially for the same reason that you are. I was worried that he would just automatically diagnose me with Lyme whether I had it or not. I am extremely mistrustful of doctors and prior to getting very ill last summer I had not been to one since I was a child.

Fortunately, in my situation my LLMD turned out to be okay. He was the first doctor that actually listened to me and took my opinions into consideration. The one I go to is "lyme friendly" but mainly focuses on things other than Lyme so I was confident that whatever was going on, I would likely get some help.

I have not had tremendous improvement yet. I did have Lyme testing which validated that my symptoms were due to Lyme and co-infections. I had already suspected that since I became VERY ill after a tick bite and never recovered. However, for some reason "regular" doctors seemed to think I just had stress, a psychological problem, old age (in my 20's) or an eating disorder so I knew I needed to turn somewhere else. I started having organ involvment along with severe neuro symptoms and seizures and still couldn't get any help!

I would contact ILADS or the LDA for referrals to a LLMD. Also try integrative medicine practices. I find they are much more open to treating Lyme and co-infections and may be able to help you while you wait for your LLMD appointment in December.