What Is The Hushed Truth About Lyme Disease? Recovery Story, Part 2.
The journey continues......
If you read the first article about my fight with Lyme disease, then you'll understand the obvious hurdles I face. I'm continuing my story, to the best of my ability, in chronological order. This is not an enjoyable series of articles. My purpose for documenting the illness is to maintain an accurate record of my symptoms during the healing process.
There Is Lyme Disease in Arkansas!
I'm not the type person who'll sit back & do nothing when I get sick. From the beginning, I've done everything possible to find out as much as I can about Lyme Disease. I was appalled that the majority of the medical community & the informed public had such a misconception about Lyme. So I got in action. I decided to contact UAMS in Little Rock to find out what their protocol was for treating Lyme Disease. I envisioned a large group of young, working doctors striving to learn the mystery of the illness because UAMS is a learning hospital.
I was unable to locate a doctor associated with UAMS that was considered a "Lyme specialist" or "Lyme literate doctor". I conducted a little research & found someone who had special study in the subject.
Here is a copy of the email response I received after I inquired with this individual. He happens to be a microbiologist. I asked him for help locating a doctor in Arkansas. Here is his response:
I’m sorry to hear about your illness. To the best of my knowledge, there are no Lyme disease specialists at UAMS. This is in large part due to the fact that Arkansas is not an area where Lyme disease is considered to be endemic. However, we do have a strong infectious disease group here and I encourage you to contact them if you feel that course of treatment is necessary. Unfortunately, I don’t have any clinical connections, so I can’t put you directly in touch with someone. I have attached the link for the Infectious Disease clinic. Sorry I couldn’t be of more help.
Sincerly, Mr. MB
(Okay, so I can understand that. He honestly couldn't tell me the name of a Lyme Literate doctor because he doesn't know one. I can live with that).
But......is he kidding? Lyme disease NOT an endemic in Arkansas?! Good grief, I know of two people from the same area who have been battling the symptoms for years! And it's not considered an endemic in Arkansas? I'm freaking out.
Why do so many people in Arkansas have the disease if it's not an endemic?
- Arklatex Lyme Disease Prevention & Support | Dedicated to raising awareness and revealing the tr
Dedicated to raising awareness and revealing the truth about Lyme Disease (by Arkiehinny)
I'll tell you why.....because the testing centers they use aren't accurate. The CDC won't count the test as a 'positive' unless a certain number of bands show 'positive'. Take my test, for example. It came back positive for only one band of Lyme antibody (41), so they wouldn't count it as a positive. (I had my test done in Washington state). It went on the 'record' as a negative! OH? So I just have a 'little' Lyme, not much.......not enough to count, just a little, huh? Don't get me started.
As you can see below, the actual test shows 'negative' for lyme, yet 'present' for one Lyme antibody. So the CDC says Not Positive.
Actual copy of my test results.
I emailed him back...
I'd like to point out that I replied to the microbioligist with my surprise that they don't consider Lyme an endemic in AR. Here’s my response:
Thank you for the information. I'm amazed that there is not a LLMD at UAMS. I'm also surprised that Lyme disease is not considered "endemic" in Arkansas. I believe it's because of misdiagnosis. I know of 2 persons living in NWAR (from the same area where I visited) that have been sick with what they call "tick fever". The symptoms recur frequently and one of the women has arthritis, stiff, etc. I'm just becoming very aware of what a serious problem this is. I hope that there will be a study in Arkansas soon; or more accurate testing. By the way, I tested positive for only one band so CDC won't recognize it as an actual positive, from what the test says. I really believe it's more prevalent than anyone knows. Thank you so much and I will follow up appropriately. You were thoughtful to respond in such a timely manner.
I know for a fact that in a certain section of the state there are many families who have Lyme. Of the two I mentioned above, one already has rheumatoid arthritis. An anonymous person from the area informed me that at least 3 out of 5 families in this particular area have one or more members with the disease. None are symptom free at this time, all have received the "standard" treatment from their local medical community, and each individual has varying symptoms, including children. I don't have advanced statistics to show you, but I do have the statements of those who've been affected. All I know is this: there's a large amount of people from this area with "tick fever", as they call it.
Is there a Lyme Disease Cover Up?
I can't go there now..........My tirade has ended. Time to move on now....here's my symptoms.
Here's a description of sensations I've been feeling & sensing:
As of today, the pain in my knee caps is a bit worse. I actually jogged to the mailbox yesterday, though. It seems to come & go. Going up stairs is a challenge, too. It just wears me out. My legs feel wobbly a lot, & heavy.
Mainly, my pain is in my knee caps, shins, & elbows. Sometimes is just feels "weird"- like....Sort of hot/warm, much like a magnet is in the joints. Then one day, the glands in my neck were hurting, like mumps. Then it's my cheek bones. I've pushed myself though, & continue my workouts at Curves, though I go at a much slower pace. I feel like keeping muscle strength is a priority.
I have a weakness for sweets & carbs. With this mega antiobiotic, I guess it's just best to go on the Atkins diet while on such a tremendous amount of medication because it's low on carbs, which turn to sugar, then feeds the yeast. I have some thrush trying to take over in my mouth. The whole inside of my mouth, gums & all, is really sore. I bought some Kefir, a yogurt cousin, like milk. The stuff is nasty...so I sprinkle some Splenda in it. Just swish it in my mouth, then swallow. Then it leaves a coat on my tongue. Sounds gross, I know, but with this disease we can't afford to be modest. I also got some pure coconut oil. I take about a tablespoon in my mouth & hold it as long as possible. It seems to sooth it quite a bit. If I get worse, I'll call the doc. I forgot to mention the Probiotics I"m taking twice a day to replace the "good bacteria" that are killed off with the antibiotic.
- LymeDisease.org - central voice for Lyme disease and all tick-borne disease issues
LymeDisease.org) is a non-profit corporation acting as the central voice for Lyme disease and all tick-borne disease issues
As far as other symptoms, my elbows, especially the left, bothers me worst. It aches all the way down into my arm. I can't pick up my clipboard with my left hand, yet I can push the equipment at Curves without a problem, for now. The right arm is only slightly impaired. I refuse to stop, but it's hard.
Then, of course, there's the fatigue. Dragging, dragging............. I haven't missed a day of work since I started back on antibiotics. Amazing...but I get that crazy feeling a lot, then want to cry, then throw & break things. Guess I should have taken the docs advise & taken the Clonopin when he offered it. But I refuse to get started on any Benzodiazapines. That's a whole other ordeal!
I'm taking many supplements including Vitamin D, C & others. I think that, overall, I'm doing quite well. I haven't had a super bad Herxheimer reaction this time, with the exception of one day when I was so confused & foggy, I had trouble answering & remembering questions.
I'm going to beat this thing! Like I said before, the disease is already whipped in the spiritual sense. I've done all I can do in the natural. Now it's up to me to remind myself daily that it's out of my hands being handled by a much greater Physician.
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10.
*************I'm sharing the account of my continuing journey in the video below.
Recorded on July 11, five days after starting aggressive antibiotics.
- Philosophy, Ethics, and Humanities in Medicine The Infectious Diseases Society of America Lyme guide
Flawed clinical practice guidelines may compromise patient care. Commercial conflicts of interest on panels that write treatment guidelines are particularly problematic, because panelists may have conflicting agendas that influence guideline recommen
- Lyme Disease Resource Center
Various information for help with questions on Lyme.