In May I received the results from Advanced Lab Services new highly reliable Lyme test.
I was not surprised by the positive results except perhaps that the test really did work (they claim 94 – 99% reliability)! After decades of negative tests, I prepared myself for more disappointing results in spite of the hype which I have helped spread. The reason I took the test was to encourage the hundreds of people out there who don’t know what to do with all the symptoms of Lyme and the long list of negative tests. If I am going to recommend something, I should feel confident in more than just the company brochure, right?
I have been in that position for most of my life – painful symptoms with no evidence of cause, and it magnifies depression, stress and feelings of being “crazy” when in fact we are just struggling with a feisty stealth bacteria that has puzzled and divided the medical community on cause, diagnosis and treatment leaving the victims to suffer alone.
I am SO thankful my long term local internist who knew me “pre-Lyme crash” and watched how active and successful I was in spite of many painful conditions we were unable to find the cause for.
My motto was “Work through the pain!”I refused to let almost constant pain keep me from competitive dressage, and the horses in my care (including my first home-bred Warmblood filly) nor the numerous cats and dogs, six children (thankfully the youngest was just about to graduate from high school) and a HUGE extended family that my husband and I enjoyed hosting for most every holiday. (35 for Christmas? No problem!)
So when all that ended suddenly, my doctor was alarmed and put me on Doxy immediately suspecting Lyme, and kept me on it even after a negative ELISA. He has never given up on me even with pressure from the other doctors in his practice or the financial office! He read my many emails showing medical research, and even went to conferences to learn more. And most importantly, when I shared the information about the new test from Advanced Labs he studied the site, talked to the lab and ordered the test.
I realize my MD is rare (he even works with my overseas LLMD!) In spite of the fact that we all expect that type of care from our doctors, I bet the stories of doctor cruelty outweigh mine by 10 to 1 (I have my list of those too when I first tried “specialists” in Boston. Most doctors, mine included, have 15 minutes per patient and fully booked days reserved months in advance. How does a doctor effectively treat a patient with Lyme when it takes 30 – 90 minutes just to describe all the symptoms, and they are limited to 15 minutes?
The answers aren’t as easy as some try to make them. Back to my picture, six week before my crash… I had won 3rd place in the USDF (United States Dressage Federation) Championship at Prix St. Georges only 5 other adult amateurs even qualified for Championships as far as I know…my broodmare won 3rd place in her class against huge breed farms and my wonderful filly won 3rd place for all fillies born that year
This happened in USDF Region 8 which includes New York and all states north including my home state, Maine,) so I was thrilled! Then I landed in bed with what I thought was the flu, but that was just the start. You can read my whole story on the main website if you are interested in more.
The picture with this post is of me saying goodbye to my filly all grown up….the horse I kept for when I recovered and could compete again. Her half-brother Ravel has won the bronze medal twice at the World Equestrian Games amongst many other prestigious international events) and Chansonetta with all her energy and huge size (17.1 hands) was as close to me as a beloved family pet – following me around like a very large canine.
“Chani” kept me sane through the years of being in a wheel chair (3 years), bedridden (most of the time even now), and then walked next to me as I tried to regain my mobility (still working on that!) When I tried to ride (she began her professional schooling at age 4) she would slow down if I lost my balance and gripped her hard around her girth suddenly, instead of speeding up which is what sport horses are trained to do.
She is truly amazing.
However when I began my biofilm-busting protocol I landed back in bed full time in an almost continuous herx as bacteria flooded my system. My poor horse was neglected and bored while I felt guilty too sick to look at her through the window.
So I finally realized it is time for her to meet her potential while I continue to pursue recovery full-time, and thankfully I don’t have to sell her.
Perhaps my competitive dreams will return, but as the years continue (I am officially in my fifties now) I have to face the fact that I may be fortunate to trail ride some day.
Dressage is my thing…you certainly have something similar in your life that you want to get back to or handle more reliably than you are able to with chronic Lyme. Honestly, would any of us CHOOSE this painful existence? I often wonder how anyone (including doctors) could imagine that we are making up this stuff!
I am also thankful for a very smart and innovative Lyme literate doctor in Spain who is willing to Skype with me. He is the fifth LLMD I have been treated by, and brings unique experience from treaing European species of Lyme that has not been subject to as much controversy as Lyme here in the US.
Anyways, now I am focused on my new treatment – from BOTH doctors – instead of trying to push myself beyond the actual place I am in the recovery process.
I can’t fix my immune system until the infections and parasites are destroyed. It is my opinion that the idea of accepting 90% improvement just allows the disease to continue to grow and will eventually culminate in early death or at the very least a much lower quality of life.
Biofilms must be destroyed and symptoms conquered completely…100% recovery must be the goal. Does that make sense?
My new LLMD/MD protocol includes heavy doses of oral penicillin 4 times a day, Serrapeptase to continue to dissolve biofilms, ozonated water and CDS with other specific supplements and medications (watch for coming blog post to get more details.)
The moral of today’s story is don’t give up until you have a diagnosis that will be accepted by mainstream doctors – that means Advanced Lab Services for now. Also, don’t let anything distract you from focusing on your recovery.
I learned the hard way that frustration, pushing too hard physically and stress holds back the desired healing. And listen to your body. Pain? Get medication to relieve the pain. Fatigue? Try melatonin or valerian tea to help rest.
And get the support of those around you to remind you to stop activities before you overdue. If family or friends are sceptical about your illness put the relationship on ice until you are completely recovered. Most people can not understand what we are going through and it is indescribably painful and stressful to try to defend yourself to someone you love or respect.
Researchers WILL find the answers eventually, and medical doctors will be forced to change their tune. Meanwhile take care of yourself as best you can.