What Is The Hushed Truth About Lyme Disease? A Recovery Story, Part 1.
This is part one (1) in a series of five (5). I will continue to share new information as I proceed in my journey with Lyme disease. I have added a narrative video with each new section. Please read with an open mind. I hope you'll understand how important it is to document the treatment and symptoms. This is my unexpected journey.
June 16, 2010...the Day I Found Out.
I found out I was positive for a Lyme Disease antibody on June 16, 2010, a significant day in many ways. For one, it’s my husband’s birthday and it’s also the anniversary of the day I was first contacted by casting agents in LA for a chance to participate in a new reality show. It’s funny how dates stand out. I never dreamed it would have so much significance. But finding out I could have a disease like Lyme was more than I bargained for on that memorable day.
Not the 'bulls-eye rash'!! A strange red bump...unknown if related to Lyme.
I was exposed to several tick bites the first week of May this year while enjoying myself on the famous Booger County Cattle Drive. I didn’t use insect repellent or Deet. I should have. It might have prevented what’s soon to be a long, bumpy ride. I think I had a bit of an invincibility issue that prevented me from taking a can of Deep Woods OFF with me on the ride. Why should I worry about ticks? I’ve been bitten many times in my life, so what does it matter now? I made sure I carried the 40+ sunblock! If only I‘d protected myself against the little devils I wouldn’t be here struggling to type because my wrists are aching and stiff and my elbows are hot. If only, if only…..but I didn’t.
So here’s the deal. I’ll explain this as easily as I can. Lyme disease is a big controversy. I never thought much about it until now. I’ve been reading about it, non-stop, for several days. I learned it's the fastest growing infectious disease in the country!! Yes, that’s right So how come nobody’s talking about it? What’s the deal? What I’ve learned has appalled and amazed me. You aint’ seen nothin’ yet.
According to the International Lyme and Associated Diseases Society (ILADS), Lyme is the fastest growing infectious disease in the United States today, affecting up to 300,000 Americans each year. Lyme Literate Medical Doctors (LLMD) that treat Lyme disease treat it aggressively & have special training to do so. They use long-term antibiotics, unlike traditional GP’s. For this reason, they’ve been targeted by medical boards and insurance companies. Here's the real stickler: They could lose their licenses because they don’t adhere to the IDSA’s (Infectious Diseases Society of America) guidelines for treating Lyme. The result is preventing many sick patients from getting the treatment they really need, thus leading to further debilitation. Then what happens? The Infectious Disease (ID) doctors end up making the Lyme patients feel like they’re not going to help them. It’s almost like they make themselves the foe of the patient, instead of the advocate. The result? Lyme patients don’t usually have good experiences with Infectious Disease doctors.
Specialized Lyme Disease Test? There's more................
In addition, there’s an even bigger controversy (which I won’t go into now because it opens up a whole new can of worms) concerning which labs are accurately testing for the Lyme antibodies. An individual should have a specialized Lyme disease test through a laboratory that specializes in Lyme. They can’t even decide which test is right or wrong, pointing fingers saying, “This one is not reliable” or “This one is supported by the CDC, not that one”. So on and on it goes.
This Will Blow Your Mind..........
The big whammy is this: Lyme is in the middle of a big medical/political/government controversy. The medical community is totally divided over whether Lyme disease can become chronic; meaning if a person continually has symptoms, complains of reoccurring problems or has the actual physical proof to show it, the other side of the medical community (mainly ID & GP doctors who support the IDSA) say the patient is probably/possibly infected with another illness, which starts a whole new ordeal of testing, etc. for some other disease. You know what that does? It slows down the process of treating Lyme (for what it really is) and gives the disease more time to advance to the chronic stage! It really boils down to this: the IDSA appears to be the organization who says that Lyme Disease is rare and can be treated and cured through the IDSA standard guideline of treatment.
NOT! The medical/political/government controversy ends up putting the ID doctors on one side while the LLMD’s , who are literate in the knowledge of the disease and treat Lyme patients, end up on the opposing side of the fence. It shouldn’t be that way.
What's Our Choice?
I’m the one suffering here….don’t I have a choice? Yes! So what am I doing about it? I’m proactive in my recovery. I went online and found support groups (see links below), organizations and other sources that supplied me with information on where to find a Lyme Literate doctor. I began reading everything I could find on Lyme disease, including both sides of the controversy. It was after reading the testimonies and experiences of chronic Lyme sufferers that I became determined to take control of my treatment.
I found a LLMD in another state. What was amazing was I called them one morning, faxed my lab information at noon, and at 2 PM they called and gave me an appointment for 2 weeks later. What a comparison to how the local ID doctor’s office handled my request for an appointment: First, I had to have a referral from my regular doctor. Then my regular doctor had to fax all the labs to him so he could “review” it first. Then I sat and waited for his office to call me and tell me when I could be seen. The ‘friendly’ receptionist made it plain “the doctor can’t see you until September…..” Finally, the local ID doctor’s office called and gave me an appointment; 2 & ½ months from now! When I asked what to do about my symptoms between now & then, she replied, “We can’t tell you until you’ve been seen”, in a dismissive tone. I plan to have a talk with her when I call back to cancel my appointment.
At this point my symptoms are manageable, but uncomfortable. The LLMD plans to retest me & send the sample to a reliable testing center. Now I’m just waiting to see the doctor and praying my symptoms don’t get out of control. The hardest thing to deal with is the fatigue and muscle weakness. But I’m not going to give up. I want my life back, I want my strength back, and I want to feel normal again.
I refuse to lay down and die!
“Ticks suck! Beat Lyme disease; keep fighting!”
Read the other parts to my story here:
****For therapeutic purposes, I'm sharing my personal account of this confrontation with Lyme disease in the video below.
Part 1: My video diary narrative.
Just for today, I will be unafraid. Especially I will not be afraid to enjoy what is beautiful, and to believe that as I give to the world, so the world will give to me. -Kenneth L. Holmes
Note: If you have been diagnosed with Lyme disease, please participate in the survey at the following link. "Lyme disease in 50 states"
- Lymediseaseassociation.org :Contains Link to Doctor Referrals for Lyme Disease
An all-volunteer national nonprofit, 501 (c)(3), dedicated to Lyme disease education, prevention, raising monies for research, and patient support. Provides 98% of raised funds to programs (no employees, no office overhead).
- Lyme Disease Network: An outstanding support group!
The Lyme Disease Network (LymeNet) is a non-profit organization dedicated to providing physicians, patients and researchers with the latest information on Lyme disease and other emerging tick-borne illnesses.
- HealingWell.com ..An extremely helpful website.
Resources on diseases, disorders and chronic illness, including medical news, information, articles, community message forums and chat rooms, email, books, newsletter, directory of related web sites and more.