6 years sick and still no answer...

Nine years ago I pulled the body of a tick out of the back of my head and didn't think of it again until recently. Six years ago I began to have neurological problems and was told by my doctor, "Your butt muscles are too big so it is causing your legs to go to sleep." Then my hands and arms started tingling and my skin started to hurt, I developed a tingling spot the size of a dime on my upper back that turned into a numb spot the size of a softball. MRI after MRI, X-ray after X-ray my doctors started to tell my that my muscle, joint, and skin pain were in my head. At the time I was in the military and arguing with an officer was not something I really wanted to do, until one day a Dr. after googling my symptoms told me that all of my symptoms were psychosomatic. I broke my professionalism and shouted at her that I was not making my self feel like crap or making it up. Not even a year later I was medically retired still with no diagnosis. I have been out for 10 months now, and I am quite positive my family Dr. thinks that I am a hypochondriac and even though I am a very intelligent woman he speaks to me like I have no idea what he is saying to me.
At the beginning of August (2017) I started to see a new chiropractor, after hearing my comprehensive medical history she told me she thought it was Lyme disease. She had many patients with Lyme as well as a niece and close friend. She told me to look it up and do my research (she actually recognized my intelligence and spoke to me as an equal). As she suggested I found every resource I could on the subject, I read research papers, forums (this one), CDC, Mayo Clinic, Lymedisease.org, and many others. The more I read the more convinced I have become that I have Lyme disease. I spoke with my Dr. he ordered the ELISA and Immunoblot to see if it is for sure Lyme. Upon receiving my results, I did even more research trying to find the answer to the gibberish on the report. I tested positive for B.Burgdorferi Ab Igm, reactive on Lyme 23 kD IgM, 41 Kd IgM, as well as Lyme 23 kD IgG. From what I have read this would not be a positive result per the CDC, but that according to many LLMDs that it would be considered significant. My family Dr. is in no way a LLMD, and I worry that this means he will close the case and not revisit the possibility. I know there are other tests and testing facilities (I read up on IGeneX), but I am unable to afford such tests.
I read the extensive list of Lyme disease symptoms posted in this Forum (Thank you for such a comprehensive list!) and I have at least twenty of the symptoms but most noticeable are the brain fog, neurological issues (change in skin sensitivities and tingling and periods of numbness), sleep disturbances (PLMD, RLS), IBS, wide spread pain to include joint and muscle pain, and the latest is very very bad hair loss.
After all this time, I just want to know what is wrong with me. Any advice is welcome. Thank you.

Welcome here and it sure sounds like lyme to me. Lyme should really be diagnosed with a clinical diagnosis. The testing is not perfected.

Here are a couple of tests that you can take to your llmd and will help confirm a diagnosis based on your history.

lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

/www.lymediseaseassociation.org/images/NewDirectory/Resources/DrB_SymptomList2005Pdf.pdf

Someone that has lyme really needs a lyme literate medical doctor. Regular doctors are not school in lyme disease. They do a tad of research and find out it is a bacteria and they will treat it like a general bacteria. That course of action does not do well with lyme disease.

The CDC guidelines for treating lyme is horrible. Upon first getting lyme it should be treated quickly and aggressively. But if you have had lyme for a long time a whole different approach should be taken, in my opinion.

Since you say you cannot afford the Igenex WB test ($210), I will assume money is tight. With that in mind, have you thought about treating with herbs? You can pretty much self treat yourself with the education you get online, from forums and books. You will still have the expense of the herbs, but not the doctor visits. There are many herbal protocols to choose from. What I did was research each one and have a pro and con paper until I decided which was best for me.

Lyme causes inflammation.

Lyme causes pain.

Detoxing is so very important. Here is my fav site for detox methods. www.tiredoflyme.com/detox-methods.html

This forum can also help you find an llmd, should you choose to go that route. If you start a new thread "Looking for LLMD in ___________(city), you can get responses from members. We don't put doctors' names on this forum in order to protect them, but people can give you initials or email you. Your email will need to be enabled for this.

Welcome, Angdebo!


"I tested positive for B.Burgdorferi Ab Igm, reactive on Lyme 23 kD IgM, 41 Kd IgM, as well as Lyme 23 kD IgG. From what I have read this would not be a positive result per the CDC, but that according to many LLMDs that it would be considered significant."

That is considered CDC Positive.

From the Igenex website;
CDC/NYS Criteria: The Lyme IgM Western Blot is considered positive if 2 of the following 3 bands are present: 23-25, 39, and 41kDa.

/www.igenex.com/testing/interpretations/lyme-disease/

You shouldn't need a referral to see a LLMD. Give them a call yourself and see if you can book an appointment.

Welcome to our forum Angdebo,
Sorry you have had to go through all of this but glad you are finding answers now and on the way to a path of healing.
Take care and we are always here for questions and support.

Do remember that it is very important to detox there is lots of good helpful information on our"New to Lyme"start here thread at the top of the page.

Take care, Jo

I have been trying to get better for at least 5 years now. I have similar neurological issues with lyme. To be brutally honest, it is a very difficult disease to get rid of. The reason is that the biofilms protect the spirochetes. One thing I've recently begun learning is that CONSISTENCY is KEY. You need to take natokinase everyday for a year or two to completely rid yourself of the biofilms, and then after that year is over, keep taking it every day. You may find that you can only tolerate 1/15th of a pill if you take it every day. That's fine. Just do it every day, and slowly build up if you can, or if you find yourself getting too sick, back off. You'll also need to take antibiotics or Cowden herbs to kill the spirochetes which suddenly find themselves without their biofilm home to live in. Again, if you take abx, you may only be able to tolerate 1/15th of a pill, but the key is to do it every day.