Thanks everyone for your info-advice so far, much appreciated and useful!
Brief (as I can be )History:
from fall 2004 until Feb 2007 I was progressively getting very sick.
The medical system failed at every level- PCP, nerologist, specialists, testing etc.
I found out I had LD online- after my nerologist labeled my condition a "medical mystery" (I was upset)
I simply started looking for diseases labeled as hard to diagnose and quickly found lots and lots of LD info.
Looking at the longer symptoms lists it was Painfully obvious that I had LD and maybe co-infections.
I also quickly discovered that there was great controversy surrounding every aspect of this "clever" disease
I had to decide for myself what seemed logical, not an easy task in my condition (thank God for a praying family and church!)
after reading some LD information I printed, my neurologist agreed to look at LD again
(she had tested for this already using a simple blood screen of sorts)
Her receptionist had heard of a local PCP who had experience with LD, so I was reffered there.
I had a list of questions for him, too see if he if he agreed with the info I found to be credible
To my surprise, his receptionist was able to answer all of the questions and his practice used the same resources I thought made sense.
As it turned out he had treated over 1000 (onethousand) patients for LD (mostly chronic/late stage)
He also has an 80% full recovery rate. I was shocked after everything I had read about LD.
He was very familiar with my long sad story of "failure to diagnose".
He primarily uses very long term dual oral abx therapy in addition to other proactive meds/supplements to prevent bodily harm on abx
He also uses other methods (IV etc) when this is not an option, but I get the impression he preffers the oral abx.
It seems this is partially to avoid insurance battles.
Prior to march 2007 I knew nothing about LD, I thought it had something to do with a mineral.
Now, it seems I cant talk to many who dont know someone who has been diagnosed with LD or has had it themselvs!
This doctor is local, central Maine, and he is very good at treating Lyme.
I was sick for so long and he is a 40 min. drive from my house.
In his words, he operates "under the radar" to avoid persecution from the medical cummunity.
So, what does this have to do with activism...
I have a stong inner desire to help change the failing system.
I have contacted reps and senators, the governor, CDC, and many others with very few replys.
I have used my story and posed several questions about-
why can I, an uneducated factory worker, diagnose my disease in one sitting at my computer
but not one of the multitude of doctors or tests could do this in 2.5 years of suffering.
It's appauling.
I have signed petitions, sent emails to encourage political support on current bills.
But now, I have had to stop seeking avenues to be active for 2 main reasons:
1. My doctor stongly cautioned me not to bring him into the "Lyme light" so he would not be a risk of loosing his practice.
This would be devastating to many local patients in treatment and to him and his family.
after researching the very serious legal actions taken against doctors using similar treatments
I see and understand his concern. However, This just adds fuel to my outrage at our government and the so called "professionals" halting progress!
2. The second reason is that this (even writing this post)is physically exhausting and seems to trigger a downward spiral of neurological symptoms that can last for days.
I want to help, I feel this very strongly, but I do not want to put my doctor at risk.
What can, or should I do??
Thanks, Ben
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Hi Ben. You wrote: 2. The second reason is that this (even writing this post)is physically exhausting and seems to trigger a downward spiral of neurological symptoms that can last for days.
There is your answer right there. Take a break from worrying about the cause; do everything you can to make you better.
You do come first in this case.
Maybe some of the good folks from your state could tell the rest of us what we can do to help the cause there in Maine. Maybe we could write letters or do something. Maybe we could fill in for you while you are getting better.
I sure would cease from identfying the near locale of your doctor, especially if it is going to be published anywhere.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi Ben!
i understand and share your outrage.
i know you'll protect the doctor you've mentioned. and there is a lot you can do without ever bringing up that person's name.
your doctor is at risk because of the larger war against physicians who treat chronic Lyme.
Want to do something? You can choose to be active at a very local level, or state-wide, or to get involved with national-level Lyme. For instance, do you know if your Congressional reps support the federal bill to support funding Lyme research?
Scroll through past posts here in activism to get an idea....
hope you do jump in and say in the battle...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
You can be active without naming your doctor. If a reporter asks for the doctor name, say you are withholding it because of the anti-LLMD political climate.
You can find out whether your congressional representatives have signed on to our federal legislation as co-sponsors.
You can become active with whatever Lyme support groups are in your area.
You can join some of the other internet Lyme chat and support groups.
You can learn as much as you can by reading things on-line, so you can be knowledgeable in all of your Lyme-related activities.
Good luck!
Posts: 991 | From California | Registered: Feb 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey BJK...
You said.. "My doctor stongly cautioned me not to bring him into the "Lyme light" so he would not be a risk of loosing his practice.
This would be devastating to many local patients in treatment and to him and his family."
````````````````````````````````````````````````
Yes.. many LLMD's have been "attacked". VERY sorry about it.
They not only have to deal with us.. and our zillion problems.. but also have to fight a battle to be able to help us.
Those LLMD's who are out in the open have risked the most and have banned together to try to make a difference. They need the support of as many doctors who treat Lyme as possible... and patients.
Maybe some day your doctor will take the next step and fight the good fight in the open so other doctors won't be left twayin in da win.
The exposed LLMD's have patients who too are at risk of losing them.. but they KNOW they are right and go the extra mile and risk it all to help make changes. Without doing that.. many more will suffer.
There is much more power in force... so I hope your doctor will come out of the closet soon.
Good luck with the activism efforts.
I am sure there are ways to not mention your doctor personally.
I've been doing this for years and to date.. have not shared my doctors contact info with anyone.. even if the doc WANTED me to.
posted
Thank you all for your encouragement and cautions, Im taking it slow.
My doc has mentioned coming out of the Lyme "closet" but has yet to do so, I hope he decides to.
I posted a comment on the ABC site as recommended in another post here.
I also emailed my story to Kathy Fouler, she is listening and plans to really dig deep....we'll see how it turns out.
Thanks again BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
Has your doctor ever attended the ILADS conference coming up in October? If he's a first time attendee, he could get a CALDA grant to defray some of his expenses. More info at ilads.org.
Posts: 991 | From California | Registered: Feb 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Sorry not to see your post before, BJK, I haven't been in the Activism threads lately, as I've been busy DOING activism. I am from Maine, and I probably know the doctor you are speaking of, and yes, if he wants to go public, let him do so in his own way and his own time.
I fully agree with Ann: make sure you are better first! We would love to have you get involved in Lyme disease advocacy in Maine, when you are ready.
I will send you a PM, which you can find by clicking on the link near the "Hello, BJK" above the message threads.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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