Just starting and already left behind. :P

I have been looking for answers for three years now from blood tests to an mri of my brain. Symptoms seem to cycle. Tremors are bad for a few days. Then my digestive system gets messed up. A couple of days later that seems okay but my left eye twitches and my legs jump like I should have been born as a bunny.

A headache/ hangover feeling shows up for a few days and is then relieved only by my back, arms and legs feeling as though I moved a house full of furniture all by myself. And so on. Rinse and repeat.

I actually feel pretty good I guess. I am thankful I am working. I am amazed sometimes because I often feel pretty worthless and unproductive but I was there! lol  I suppose I am really doing okay there and am blessed for that. At least I have not gotten yelled at yet.  ;)

It never ceases to amaze me how tired I get and then I awaken after only sleeping 2 hours? How is that possible?!  I love it when I can fall back asleep but then a couple of hours later...is the sun up yet? Noop! My eyes hurt a lot especially when things are bright. Am I the only one with hearing loss that cannot be explained?

Right now I am laying here and he is gently snoring. I am conflicted with deciding if a cup of hot camomile tea would be worth how many times I will have to get up and tinkle...

I received these results from Igenex in October and someone told me info about a CD57 test that leads me to believe I have lyme. Not only did it take me forever to find an LLMD I am now on a 6-9 month waiting list to actually get a doctor's appointment with him six hours away. So, I am hoping to just know if I am wasting my time or needlessly worrying or...I need to stay on the list. The test results of concern are:

CD57 NK Cells Absolute CT 25. 98+ is normal

CD57 NK Cells (% Lympho) 1.10. 4.65+ is normal

IFA. B Burgdorferi G/M/A =80. = or >80 is positive

IGM Result Bands 39 IND and 41 +++

IGG Result Bands 39 IND, 41 + and 58 +

I had an appointment with an ID doctor last Friday that I went through hoops and over a month to get... I left very frustrated. He does not feel I have lyme.

I asked about my IGM Result Bands 39 IND and 41 +++  and IGG Result Bands 39 IND, 41 + and 58 +  and he does not know but says he would probably test that way without lyme.

I asked why I show IFA. B Burgdorferi G/M/A =80 . He does not know but thinks equivocal is irrelevant.

I asked why my natural killer cell numbers are so low at 25 and 1.10.  He does not know. But I do not have lyme. What am I supposed to do especially when they call to leave a message on my phone and cannot even say the name of the disease right! Even my regular doc is treating me weird and I cannot get help with just sleeping more than two hours at a time.

If I really am positive, I will be number 5 in my family. Weird I know. My baby sister almost took her own life in October dealing with everything. I am not in the mood for ignorance. :( Not impressed. Not happy. Feeling kind of left behind without someone near me that knows. If anyone knows someone in Southeast Louisiana with half the knowledge an LLMD has it would be helpful. :)

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

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, ​ information on probioitics and much more.

Be sure to run away from that ID doc that said he would test that way without having Lyme!!! It shows his ignorance! And equivocal doesn't mean it makes no difference, the actual definition of equivocal is: "open to more than one interpretation; ambiguous". He just didn't want to have to treat you.

As for your test results, here is the site that I use to help interpret them:www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

The more +'s you have beside a number, the stronger the reaction.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss.


Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Band 39 is Lyme specific though. It indicats BmpA - Bacterial Membrane Protein "A". So there is only one way for that protein to be inside of a person, and that's for them to have Lyme disease.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelop under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get.​


You can email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74


​ You can also now email TBDA (Tick Borne Disease Alliance) at medicalinfo@tbdalliance.org​
​ and ask for LLMD referrals also.
​

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf

Cajuncootie, although it is optimal to have a knowledgeable doctor such as an LLMD helping you, it is not imperative to have one to heal.

I am an example of such that. I went through the whole gamut of specialty doctors in search for one to prescribe antibiotics with no luck. I eventually found a doctor outside of my insurance network that would prescribe antibiotics for an exorbitant sum. I continue to see him every three or so months just to get a refill of the prescriptions.

You can begin to treat yourself with herbal medicine and modifying your diet. Doing this will at the very least stop the growth of the bacteria. There is much information on here and on the internet on how to treat Lyme naturally so it should not be hard to create a treatment plan by yourself and modify it as you go along in your treatment. Each person responds differently to different rx or herbs so you have to find what works best for you.

Good luck in your road to healing.

Understood, Cajuncootie. There is some significant history to explain why the medical profession has failed us. If you haven't seen it yet, "Under our Skin" is a good documentary that provides some explanation for this complete abandonment of their responsibilities—and the system's abandonment of medical professionals is part of the picture as well.

youtu.be/2JgR_Jfbhv8

As you can probably tell, I'm angry—many of us here are. But through my own journey I have grown much more educated about my body and my condition and treatment, which is empowering and I'm very grateful for the knowledge. Only good can come from learning how to be your own health advocate.

I, too, had a nearly 6 month wait to see my LLMD—she was well worth the wait. And I filled that time with as much learning and understanding as I possibly could. I was over prepared for the appt. and I'm sure she appreciated it.

But even my first couple appts with her nurse (required before seeing the LLMD) were a little frustrating. The nurse acted suspicious and very cautious and even suggested I need to see a psychotherapist for some of my symptoms. I stayed confident—ignored the noise and kept pressure on for them to provide the service I was paying for. People forget that you are hiring these medical professionals to do something for you—like you would an attorney or someone who landscapes your yard. And you can fire them for nonperformance, too.

-p

" I stayed confident—ignored the noise and kept pressure on for them to provide the service I was paying for. People forget that you are hiring these medical professionals to do something for you—like you would an attorney or someone who landscapes your yard. And you can fire them for nonperformance, too. "

I soooo agree, P!!! I've sure fired more than my share too!!