My name is ****. I live in ******, SD and work part time at a natural food store while holding down a full time job in a graphic design position. Your articles are published in our local newspaper. Every article that is published breeds a swarm of hopeful customers in search of your recommended products. They come by the dozens and often clear out our inventory. It's obvious to me that your opinion in this town is highly regarded.
There was a recently published question in regards to Lyme Disease testing methods in which you kindly replied to. I want to first say that I am happy you at least bothered with the question itself. However, your reply concerns me, and I'm sure that I am not the only person writing to you about this. I hope that you will take the time to read why and give it some genuine thought.
I know I made it sound like I work a lot. I am a hard worker, but in the last 3 years I've only been physically able to work no more than 30 hours a week. At the age of 27, 30 hours for me is a good week.
I've had undiagnosed health problems since age 17. Straight out of high school I was riddled with constant back pain and discomfort, fatigue, and other bizarre symptoms for no apparent reason at all. My symptoms got slowly worse and worse as they grew in number. Twitching muscles, numbness in my head, allergies, shooting pains, arthritic pain, constant back pain, difficulty breathing, digestive disturbance, etc. I don't smoke, I don't drink. I went to chiropractors, doctors, specialists, and finally I gave up on finding answers from the medical field. I turned within, researching on my own to finally arrive to a conclusion. Long story short, I invested in getting a Western Blot test in June of 2010, just before turning 26. The results? It was lit up like a Christmas tree, even receiving a positive CDC result. No bullseye rash, no classic knee joint swelling, yet a clear indication of infection was proven.
I've been in treatment for almost exactly one year, sir. One year, and I still have no physical relief yet despite my positive outlook and my obvious responses to treatment. You may ask if I even have Lyme. Of course I do. You will just have to trust that I am an honest person and other possibilities have been ruled out. There are SO many complications to this disease that many do not understand or even know of. This is why I was prompted to write you.
What concerns me about your article is the misrepresentation of facts about Lyme Disease. While a lot of what you reported is semi-true, you have failed to include how common co-infections, such as Babesia (a blood parasite), and Bartonella (Cat Scratch fever is only one of the many strains of this bacteria). There are more co-infections, these are only 2 that I'm certain I have and have the most knowledge on.
2-4 weeks of doxycycline MAY cure a brand new infection of borreliosis (an infection of b.burgdorferi ONLY). But this time frame you've outlined in your response is just downright irresponsible if suggested to a patient who has been undiagnosed for any amount of time, be it 2 months, 2 years, or 10 years. You took an oath as a doctor, retired or not, to help people. Please realize that your knowledge, or lack thereof, can harm the people you intend to help just as easily as you can help them.
This information you've provided gives your devoted readers the impression that Lyme Disease is:
1. A Simple disease 2. Difficult to catch 3. Easy to treat
Lyme and co-infections are none of the above.
Would you want to receive a blood transfusion from a person infected with Borrelia? Or how about the blood parasite, Babesia? The fact is, there are other ways to be infected by a spirochete, blood parasite, and bacteria other than being bitten directly by an infected tick. Blood transfusion is one of those ways, of which you failed to mention. This gives readers the impression they have to be in the woods to catch this illness from a tick. What about mosquitos? Perhaps it hasn't been proven that mosquitos carry Lyme bacteria yet (mostly because there are no funded studies in progress), but they do carry viruses like West Nile. Is it impossible to think that they couldn't transmit lyme?
I can't speak for your readers around the nation or world, I can only speak for what I know. This little town of *****, SD is filled with devoted, trusting, naive readers who blindly follow you. You need to give them the truth, always. And the truth is, Lyme is not recognized as a serious condition in the medical field despite it being exactly that, a seriously overlooked condition. It's evident by your lack of correct information in your article that you are also in the business of believing what the IDSA states in it's guidelines concerning Lyme Disease.
If we can't get proper recognition, we can't get proper treatment. It's mostly the fault of the IDSA for not providing you with proper guidelines to go by. I can't even go to a "regular" family doctor without being looked at funny. It's extremely, extremely sad to live in America and be denied proper treatment just because the doctor's were given false information about this disease. Luckily for us, there are Lyme Literate Medical Doctors who actually give a crap about patients that are sick with this ugly illness.
If you do not know enough about Lyme and it's common co-infections, please - for your sake and the sake of everyone who reads your articles, LEARN MORE, and submit another article making the corrections or additions to what you've already fed your readers as correct information. I am not implying none of your information was untrue. It was, however, disastrously incomplete.
There is a book called "Cure Unknown: Inside the Lyme Epidemic" by Pamela Weintraub that details all the complexities of Lyme Disease from diagnosis to treatment to research. It's unbiased and beautifully written. I benefit in no way, shape, or form by suggesting you read this book. My only wish is that it will open your eyes to the truth of this disgustingly underreported, underestimated disease that is not getting the recognition or research it deserves. I hope that you will soon be one more doctor that is in a position to inform the masses, to help guide people to the truth.
I may not be smarter than you, but I am smart, and I know Lyme. I know Babesia. I know Bartonella. I know physical pain and mental anguish and I am overcoming them a little bit day by day over the last year, NOT in 2-4 weeks.
Please, just learn more and correct your statements. You probably won't, most doctors don't dare to go against the rules if the IDSA. But I pray that you take this email (and likely the multiple emails you received regarding this post) seriously.
Posted by FYRECRACKER (Member # 28568) on :
Crap, sorry to the moderator.. I honestly thought I was posting this in Activism!
Posted by RC1 (Member # 31923) on :
That is an awesome letter!
Posted by RC1 (Member # 31923) on :
That article was in my newspaper this morning too.
Posted by philly78 (Member # 31069) on :
It is a REALLY good letter! Well done.
Posted by FYRECRACKER (Member # 28568) on :
thanks! throw in your 2 cents too if you have time. I swear, people follow that man like a god.
Posted by lou (Member # 81) on :
Great letter. Gott has been getting lyme wrong for years, and no signs that he is paying any attention to our letters. But you deserve a pat on the back for giving it a try. Fighting back somehow helps us feel less victimized.
Best of luck with your treatment. Hope you find something that works for you.
Posted by tickbiter (Member # 31829) on :
Very nice letter fyrecracker i really hope he reads it and considers what you said...also your pm box has been full ive been meaning to reply to your pm
Posted by sickofsick (Member # 29258) on :
Thank you for your letter! We need to persist!
Posted by FYRECRACKER (Member # 28568) on :
![[Smile]](smile.gif)