Posted 7/5/2009 12:38 PM (GMT -7)
This was a gr8 thread generated by Gracetiger. I just read through everyone's responses and could not help but appreciate, once again, the articulate, intelligent, wise, well-researched, respectful, human beings that have been brought together here.
Lyme. True Lyme.. and its 'package' brings so many paradigms with it.
I was so very confused the first year that Heather was dx. (we are in the beginning of her fourth year of treatment, no longer on ABX - she is drug resistant through no fault of her own)
Back then, as several dear ones here can validate (and u are welcome to let loose) I vacillated between 'today I am sure' to some of the same questions that you are bringing up, Gracetiger. I am glad that you brought them into the open for this type of discussion. I also appreciate that everyone was chiming in with credible answers. This is what will quiet the mouths of the lions who claim that some forums are loaded with people who hype, mis-lead and default everyone into one lane.
Gracetiger, you have been given tremendous advice. It is for a reason that you laid your heart out on the line and your doubts will dwindle as you continue to seek credible research. It is also for a reason that you are researching and have been led here. I do not know what that means for u yet. While I do not know if your body is battling this pathogen, I do know that with the right professional who is trained to include Lyme as a differential aspect of his clinical diagnosis, you will know what is right for you, and if so, at some point learn which treatment method most applies for you.
In every field of scope, there are those who bring a blemish to the truth. Careful research weeds that out, so stay the course.
Keep asking good questions and listen to what can be substantiated w/science, then marry that w/wisdom knowing that politics are heavily involved in this disease.
We are caught in a period in history where the answers are emerging; but, we also have much science to rely on if it is permitted to be included for the sake of the patient and practitioner.
You need to have a clear periscope of your own medical history; a time line, copies of all historical medical records and a daily calendar to help guide you. Marry that w/well researched equipping and you will know. At some point you will be confident and know that you must move forward with whatever the decision.
When Heth was late, late diagnosed w/Lyme after 15 years of searching, asking, persisting, we had a test that happened to offer positive bands and we were not even considering Lyme. BUT, we (the Bear and I) had reached a point where we no longer had confidence in the medical community. It had failed our daughter, my husband and I had huge doubts.
I set out on a little something I like to call my own game of 'Clue'. My goal: to disprove 'their' theory. By the time I finished just round 1, I was sitting in front of a computer screen well into the wee hours of the morning, crying in despair to God. I knew that what I had finished in no less than several hundred hours of reading, weeding, researching - that this was my daughter's history, that they had missed it and I was devastated to realize that we were very, very late intervening. I was terrified. I was able to piece a time line together; not trying to fit her into it; but to disprove it. I could not. I had to channel my terror into a plan with a purpose. Bear was steady and trusting which helped keep our boat afloat.
BUT, I still had doubts. Who were we to believe. Enter phase 2 (many of our friends here are nodding like that puppy in the back of the car window at this point)... We respectfully asked for a copy of her tests (oh, the broad smorgasboard of tests that had been run for the first time in her life - revealing and validating the dx..)
We had traveled to this particular physician thinking she was battling something completely different; but HE was the one who said, "We are not going to put all of our eggs in one basket". After spending hours with us, (I) asked the doc if he would be offended if we took copies of the tests and went for a second opinion. He smiled, (empathetically) and handed everything over to us. I think he knew we would meet again :) More indepth methodical research.. more.
And we moved on to the next stop - in a completely different state after another couple hundred hours of researching and asking. But, not before this 2nd physician was kind enough to 'give' us 2 hours of his time on the phone, discussing in-depth our test results. All of them. Not diagnosing, but simply educating to help us decide whether we should consider the trip for an appointment. He did not tell us what to do. He simply and very patiently answered all of our questions. Credibilty personified. We sked. the appointment the next day.
By the way, we do not have the financial means for this type of scavenge hunt; but, we realized that we were facing a life and death situation and needed to be sure, then commit or move on.
Another 3 hours spent w/this specialist - a leading physician and scientist who graciously answered all of my skeptical questions. And who, by the way, offered the most in-depth in clinic physical and detailed history we'd ever known. Taught us 'through' the appointment. Did not talk at us; but, spoke to us w/gr8 respect. He saw the trauma of her suffering and our beaten down family.
By the way, in our circle of health care providers to include multiple physical therapies, inside and now out of our team - I am well known to be the 'Mom of a thousand questions'.
The second doctor, like the first physician, did not default to Lyme. There was a detailed history through great grandparents, incredible testing and a professional, cohesive differential diagnosis. Much was ruled out - appropriately. We asked him if everyone he saw had Lyme? He said, no! He gave us examples of some rare, genetic or 'mis-diagnosed by other physician'-type scenerios that were ultimately the answers for these particular families.
There were additional immune complexes, natural killer cell, anti-nuclear antibody, multi-immune viral panels run, in addition. There were a host of labs to nail down where deficiencies may have not yet been captured and a plan was devised.
BUT, that still did not win me completely over. What it did do was add to my anxious thoughts, my fears, my grief b/c I was understanding more and more what we were up agains and that there was no way out of the reality that had caused my daughter a life time of roller coaster suffering. We were reaching that place in the cross-roads where we were well equipped and no longer in denial. I knew that she was chemically sensitive to... everything and I dreaded the options. This was angering and literally devastating for a mother. I am not alone here. But, this was my child. And we had to do something.
Sooooo..I respectfully asked one of the top scientific-Lyme doctors in the world if HE would be offended if we went for a 3rd opinion. He smiled, too. He said gently, "do not wait too long. Your daughter is a very sick girl." I think he knew he would see us again, too. He wrote out his orders for us to take along. He and our first doctor spoke on the phone on Heather's behalf - true to their word. I stuffed the prescriptions as far back in the folder as I could get them. I did not want to see it.
At the third opinion which now invited complimentary medicine to the team (one very brilliant man) (and by the way, each doctor was added to a team. It was prayed over and even though I was in a denial-research state, I think I was inately being prepared for reality)...each doctor was asked if they would work with the others in communication so that there would be no contraindications for Heather. Yes. Everyone agreed and everyone kept their word. Integrity at its greatest hour!
We had to have an integrative approach and we now believe this team was an answer to prayer. Hers became one of those 'Spacie-Gracie-like stories'.
Our third doctor, separate from the other two concluded the same diagnosis. All were regretful that we were 'in this place'. All very supportive. No one blew smoke, and in fact, all have been gracious and sacrificial.
We went on to build a huge team. Why? B/c of the late dx and the elusive nature of the bacteria, co-infections, accompanying virus's, immune destruction, deficiencies - her body (not her spirit!) - could not handle the drugs, the therapies and the die-offs. She was on baby doses and would herx horrifically; her liver could not handle the toxicity; her elimination channels blocked by years of toxicity unidentified and not necessarily visible. We had to carefully tiptoe through every step of protocol, detox. Her brain was involved, neuro-Lyme, mulitple co-infections, virus's all surfaced over time.
What was only somewhat visible to the eye in terms of how much Lyme in the beginning, began to later be revealed as her immune system, into the 2nd year, began to wake up. This was after we had nearly lost her (how many times to my dear friends here?? - those of you who have also fought for your childrens' lives?..time and time again?)...several times.
We have learned that our role is not one of convincing others that they have Lyme; but to respectfully be available to guide others to their own answers. We have learned from years of experience who is credible and where to run from. First do no harm is not at the top of the pecking order in the hearts of many involved in this political warfare and it behooves the patients to educate and equip themselves so that they can appropriately rule Lyme in or out. It should be part of a differential diagnosis under the watchful eye of trained physicians.
Doctors on the front lines are not fully equipped to do this yet. Some of this is b/c of the politics, driven by commerce, pharmica, bad ethical behavior and selfish motive; some, sadly falls on the part of practitioners who have fallen prey to this type of medical cattle-herding and who over time became puppets within their own society. They lost their passion from being dictated to-under the umbrellas of corporate business plans. When a physician is told they have to meet an 8-minute patient criteria, 8-patient every hour mandate, they are worn out and submitting to the ropes that tie their hands, dictating how they utilize their time, exhausting any hope for continued learning.
I am able to say this b/c our family, like others here, now serve voluntarily as national and at times international educators and patient to physician liaisons. It is a high calling. We march to the beat of a high standard and represent both patient and physician, science and prevention.
We meet w/doctors frequently and I hear their stories. Many have been serving for many years and do not want to become Lyme specialists in their hometowns. Why? B/c they have a sense of reality now and are beginning to grasp the complexities and do not wish to be Lyme specialists. They know their patients are sick; but they are either afraid of the medical review board or IDSA pressures and fear for their practice or are confused by the messages being conveyed and simply no longer have time or are willing to take the time necessary to research it out. But, once you lay science on the table (most respectfully, since I am not the Phd)..credible, inarguable science, any sarcasm or ignorance usually ends. But, like you, dear Gracetiger, there still remains skepticism. Who do we believe.
Once they do their homework (and most that we meet with slowly but surely do (b/c we build on relationships so that there is a healthy confidence :), they begin to see truths and are able to discern more clearly. This is when we are able to bridge professional relationships w/Lyme specialists and invite physicians into accredited training grant CME programs. Valid, scientific, valuable training. I have yet to meet a doc who after completing the shadowing training who is not a transformed human being. At some point, the argument, the doubt - dies. Eyes are opened and patients are helped.
But, up to that point there is so much confusion.
The IDSA guidelines are narrow and outdated. This is a proven fact from the CT Attorney General's very credible anti-trust investigation that led to a re-convening of a NEW panel of board members (under an ethics ombudsman) to include presenters who will speak to both sides of the two standards of care. Listen to their mandated public hearing on July 30th and determine for your own personal well-being who is representing the patient and who may be defending a 'position' or a 'cause'. I have initiated a thread announcing the details of this, by the way.
While there is much in the rhetoric, which has subsequently flowed down through the ranks, my ongoing question is this...
...If one does not believe that persistent infection exists, or if one believes as is stated by the (IDSA) that patients continue to suffer, BUT science does not exist to explain these symptoms and how to properly resolve them...then WHY are these very same voices not investing research dollars for the answers?
Why are (they) stopping an incredible piece of legislation (HR1179) that would offer those answers in research and development, a gold standard test for every phase of the disease, appropriate treatment guidelines for every phase of the disease to include its complexities and variables, mandated insurance coverage for EVERY patient and education to our front line physicians and every specialty so that Lyme, particularly in endemic areas of the country becomes SOP (Standard Operating Procedure) as part of differentially diagnosing a patient who suffers from multi-system, multi-complex, multi-symptoms to ensure properly, cohesive, covered treatment for and protected from psychiatric dx.
It is simply wrong that patients and physicians are suffering at the hands of this type of behavior. This is why physicians are opting out of insurance coverage. If an unknown doctor behind the scenes of an insurance company says, 'no, we will not cover that'; it is acceptable practice without question. It takes the diagnosing physician out of the picture and becomes a cat and mouse chase. Is it right? No, absolutely not.
What can we do? Speak out in the right places? Go to your representatives, write to your insurance companies, help move the legislation, educate and equip yourself to speak beyond the questions in a way that helps you advocate for your health and well-being.
My families faith in certain physician is restored. We were led to the most incredible docs. They do not claim to have all of the answers; but, they have walked the long mile in our mocassins and have helped us carry Heather through her life-threatening battle. She is at a different place now. She has a ways to go in remediation and with persistence of 'whatever we want to call it'. We are blessed as are many here to have very smart doctors who were willing to put their life, their reputations, their practice and yes for some, even their families on the line for the sake of the patient. I'd say that's pretty impressive. But, sometimes, it is only when we are able to look back are we able to truly understand and see.
So, stay the course Gracetiger. You have the ability to see beyond the black and white. It will shatter some things that you have believed; but will be replaced with a new appreciation for the truth. Legal minds think alike. Be careful though, b/c if you are not well, you will not want to lose valuable time stuck in the skepticism. Seek with wisdom and follow your heart. In the right hands, a doctor can help you determine if you are fighting this pathogen or another parasitical-region related bug and/or other. It is no wonder that Doxy and you collided under the African sun. I was sorry to see that.
If we can be of further service, feel free to email. There are wonderful physicians who will not default to Lyme; would include it as part of their clinical approach; but would also serve as another set of credible eyes to help uncover if there is something underlying that has not been yet identified for you.