Igenex positive, CDC Negative, Equivocal What does it mean?

[rajaenchen]

I was bitten in California years ago. I have many, many symptoms and many illneses and viruses. I had a Natural path doctor recognize the symptoms 3-4 years ago, but the western blot came back negative. In 2013, on a camping trip I was bitten agin (but by fleas from racoons and mosquitos. Not sure any were tick bites this time, but lots of deer in our camp. My symptoms went into hyper drive and I got really sick & my right knee blew up on me and is still swollen hot & full of fluid. The left knee is now joined the party.

I was tested again at that time and came up with positive for Igenex and negative from CDC. Pos. 31, IND 41 & Pos. 83-93. Also on IFA Bb came back as 40 - Equivocal.

What does all this mean? Do I have lyme or not? How do I tell? The ND says yes, but other docs have said maybe not.

[JackieCalifornia]

Wow, what a mess I made of at least part of my post (I got a new computer -- keeps me distracted because the keys are organized differently).  Trying again:

I meant to say:

"I think the two biggest differences between LLMD/LLNDs  versus the rest of the medical profession are that LLMD/NDs are more likely:

(1)  to diagnose Lyme instead of overlooking it --  because the LLMD/NDs tend to use more accurate tests most other doctors don't use, and

(2) to treat Lyme and other infections often carried by the 'Lyme' ticks with the most effective medicines and for a period of *months* instead of weeks (compared to other more ordinary ailments)."

[Sorry for the jumbled writing!]  

[JackieCalifornia]

Ditto the comments above:  finding an MD who takes a more current view of Lyme disease than most docs do is key to moving ahead.  Mojogal mentions finding an LLMD or LLND -- I agree.  

LLMD is not a degree or title, and no doc calls him/herself an LLMD -- it's just patient slang that helps us tag docs who really really do understand and take a more progressive view than the medical establishment.

LLMD stands for 'Lyme-literate medical doctor', and LLND means 'Lyme-literate naturopathic medical doctor'.  An LLMD can be any kind of doc, a specialist or a general practitioner, so there is no failsafe to know which docs really do understand Lyme for the misery it is and know how to treat it effectively.

I think the two biggest differences between LLMD/LLNDs  versus the rest of the medical profession are  that LLMD/NDs are more likely to (1) diagnose Lyme instead of overlooking it by using more accurate tests most other doctors don't used, and (2) not treating Lyme and other infections often carried by the 'Lyme' ticks with the most effective medicines and for a period of months instead of weeks compared to other more ordinary ailments.  

Non-LLMD/NDs understand this for reasons I won't go into detail here and now (there is a split in the medical community about all aspects of Lyme), and that's why it's really important to find the right doc.  

There is a voluntary association for LLMD/NDs called ILADS, short for International Lyme and Associated Diseases Association, and they have a referral function on their website if you email them and tell them generally where you are ('near Dallas TX') and how far you can travel -- some of us are/were so ill that driving an hour to a doc's office was out of the question, and if that's necesssary, then get a friend or relative to take you.  Finding the right doc and going the distance to see him/her is critical to knowing what you've got and getting it treated effectively.  

If you email to 'contact' at the ILADS site (which is ILADS  [dot]  org), they will get back to you.  It's no guarantee the doc is a good fit for you, or even that the doc is a really really good Lyme doc [since there is no test to join ILADS, as far as I know], but it's a good start.

You can also post a new message here titled something like 'Need LLMD near Dallas TX' and say how far you are able to travel.  Then you may get private message through this site from other people like me who can recommend a doc near you.  

     --->>> We do not normally post LLMD's names here in public, because in some states, the medical boards are very hostile to LLMDs and can try to cause them trouble.  

Sounds strange, but it's just the way the medical world is operating currently.  It will change some day, but in the meantime, go get an LLMD and get diagnosed and treated!  I personally went through 20 MDs before I found my way to an LLMD, and he accurately diagnosed and cured me and a family member.  We are now more than 5 years post-treatment, and are both fine.  We wish the same for you!

Let us know how we can help and how you do, okay?  Best wishes --

[mojogal]

You have Lyme and probably a co-infection or two. The important thing is that you get treated by an LLMD or LLND. They often can give a clinical diagnoses of those other infections. Things get worse the longer you wait.

[Ephedra]

It means that you have Lyme, but you did not get a strong enough result to fit the CDC criteria of positive.  Therefore most docs would say no, you don't have Lyme.  Lyme literate physicians and such, would say yes you do.

A CDC positive test is always better, because you may be more likely to get certain treatment covered by insurance.  I think that's about it.

The fact is, you are positive.  And if your symptoms match up with Lyme, then that's probably one of your problems.