Got my Lyme results
 

So I got my Lyme results and not sure what to do. I had tests done on the same day by two labs, Stony Brook and Igenex.

Stony Brook

IGM 41+
IGG 39+ 41+

So according to CDC, this is negative. I would need 2 bands in IGM or 5 bands in IGG to be considered positive.


Igenex

IGM

18+
30+
31++
34+
39 IND
41++
58+
66+
83-93 IND

IGG

39 IND
41++

So I was positive for IGM according to igenex. IND means some reactivity, but not strong enough for a positive. Igenex requires only 2 bands for a positive result.


The fact that my symptoms seemed to have started after surgery, I doubt the validity of these results. Also, I mainly have PN symptoms, not the usual brain fog, muscle aches, and flu like symptoms shown in usual lyme patients. At the same time, i'm wondering why I got so many positive IGM bands through igenex, which indicate an active infection. Anyone know how common false positives are? The last thing I want to do is poison my body with loads of antibiotics for no reason. My IDS is the one who gave me these tests and he prescribed me a 3 week course of abx. I scheduled an appointment with an LLMD in a couple weeks. I feel like LLMD's will treat anyone with symptoms, even with negative results. I've heard even herbal treatments are very strong and have lasting side effects.

LD Tests are notoriously poor, that is why LD is a CLINICAL diagnosis(dx), meaning your doc weighs all the data and she/he makes the dx.
If you think your Lyme doc treats everyone, you have the wrong doc.
I think you had said you know about ILADS....use their site to find another doc if necessary or PM me and I can tell you about some in our area.

Untreated LD can do far more damage than a course of antibiotics. Honestly, with your test results, and if your docs think you have LD, if you do the abx and feel better, you will know if it was LD or not. I hope you were tested for ALL the other infections you could get from the same tick bite like bartonella, Erlichia, etc.

LD is very tough to definitively dx and treat so you have to do research and help the docs make the dx. Sometimes the Lyme bacteria Bb stays hidden or inactive and perhaps the surgery or your body's reaction to surgery, brought it out.

Please don't take it lightly, I lost my career because of LD. I went many yrs without a dx but that was decades ago and they know much more now. Just make certain to take probiotics and eat a nutritious, SUGAR free, ALCOHOL free diet while on abx.

Links to Dr Joseph Burrascano's dx and treatment guidelines paper...a Long Island doc who treated for decades. He is a brilliant guy....no longer practicing.


dr Joseph burrascano treatment and guidelines for

http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf

Great book from Dr Richard Horowitz
His book is an excellent resource. I was dx'ed with Lyme Disease decades ago after years of misdiagnose. I bought this book just last yr and learned a great deal.

*broken link edited out*

Dr. Richard Horowitz’s recently published “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease,” is #10 on the New York Times list of top-selling science books. Continue reading → *broken link edited out*

My best to you,
D.

Amen to everything written above!

David

Hi Tuna,
I just posted a big long reply and my computer lost it. I have to get my kids ready for school so must condense.
I feel your pain. I was floundering around with treatment options from 3 different doctors for a while and so determined to find the cause of this disease. My energy was fixated on finding out why!:confused:
The lyme dr. who has patients coming from all over the world says I have lyme and bartonella. He is ready to treat me. A rheumatologist wants me to try Plaquenil. My neurologist is worried about a year or two of neurotoxic antibiotics for lyme. He doesnt think its lyme, but can't say its not. He would rather treat with a round of steroids to see what happens, but he doesnt even want to do that either. He still prefers we wait before doing anything. I have heard that steroids would be disastrous if it is lyme.

I have reached to decision to stop putting the limited energy that I have into finding the cause, the what's, the why's. That is what I was fixated on.

I am still going to dr for blood work and such, but stopped tying to figure it out.
My focus now is to understand where I have control and where I don't. I've always had a very healthy Mediterranean type diet, but it wasn't giving me enough help and allowed for malabsorption for who knows how many years. I am eating differently now and I am improving.

sorry for the sloppy typing.

What do you eat? Have you had a work up of vitamins and minerals?

I did this as well for two years until "we will never know" finally sunk in, well mostly. I still go back to "the cause" every now and then but try more now to focus on where I am and how best to manage what I have.

I too wonder now from all that I have researched that maybe surgery might have triggered what I now think could be Lyme...the prevelance of Lyme seems to be greater now than what it used to be where I live, so I feel the need to be tested for it. My predicament is getting my Rheumatologist to be willing to listen to my concern and order the blood work....if it shows evidence that it is Lyme, co-infections, etc. ......getting the right treatment from the right doc in the area where I live. I have researched Ilads & it has info that seems valid from what I can understand as a non- medical person.
Anyone that has info that might be helpful, I would be appreciative.

Thanks, Chloecasey

Here is the link that is working correctly.

http://www.cangetbetter.com/

I started on Doxy 200mg a day for 2 weeks. So far don't feel any different aside from a little fatigue. Honestly, I really doubt the Lyme results from igenex. I don't have classic lyme symptoms. It seems igenex comes back positive for most people, whether or not they have lyme.

The doxy will increase Candida in the bowel. It may also kill off more beneficial bacteria there as well.

So I suggest a good probiotic to be used scattered in between the doxy doses. Avoid sugar and white carbs as much as possible so as to starve any Candida that is present.

Thanks, i'm taking 75 billion probiotics in between. I'll try to decrease my carbs. I usually eat white rice, oats, and sweet potatoes. No sugar though.