Since my initial visit to my LLND, I've put several things out here that she told me to do and every time some one responds by telling me not to do that particular thing. Never fails.
I've come to the realization that most of us have been let down, disappointed, lied to and turned away by the mainstream medical community so many times along the path to our eventual lyme dx that we just don't trust anybody with dr. in front of their name.
We have had to fend for ourselves so to speak.
(I try to break this up Betty just for you)
So when our lyme friendly doc says do this, do that, we have a difficult time simply trusting them.
I'm really trying to put trust in my new LLND. (Even though after almost everything she has told me to do, that I've shared with this group, some one has chimed in and said that is the wrong thing to do)
Don't get me wrong, I appreciate everyone's thoughts, I'm still going to what Dr. says for now.
What do you think about my theory?
Posts: 199 | From utah | Registered: Jan 2009
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posted
I agree, but I also think we all have such different experiences with the same disease. We try different things that work for some, but not others.
Maybe people don't want you to wind up discouraged and disappointed that yet another possibility didn't work. I think for this, and many other things in life, someone will be there to tell you you're taking the wrong path. So use the input of others as advice, but make sure you can trust your expert, your LLMD, and your own feeling about what is best for your health.
I personally have a hard time with Drs. I always research, look here, etc before just taking their advice. I consider it trusting, but still doing my homework.
Posts: 236 | From Washington | Registered: Jul 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think many LLMDs have the best intentions & try to direct their patients in a way they think is appropriate. It's just that it doesn't always work. There's no 100% when it comes to this illness.
It's difficult & confusing but it's just the way it is. Try everything they tell you to do but if it doesn't work, you have to research things on your own & make your own decisions.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I agree that I don't trust doctors in general from this whole experience. I check out even what the famous children's Lyme doctor says. I know I should just trust him but I still feel the need to do my homework. I do trust him more than most doctors.
I wish I could just trust a doctor again, but I think those days are over.
Posts: 984 | From US | Registered: Dec 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I would agree with Lymetoo on the "deviation and standard" thing.
For example, there is a physician out there who "only" likes to prescribe Diflucan for Lyme Disease.
There is another who claims co-infections are not persistent and thus prescribes a very limited routine which this doctor claims will resolve any co-infections that may be present.
Then you have physicians who treat Lyme Disease longer term than the IDSA but (But only for about 3-4 months) and believe it is an autoimmune disorder primarily and who discontinue antibiotic therapy prematurely only to then go on to treat symptoms using newly developed immune modulating methods.
There are a wide range of other physicians who are considered to be Lyme Specialists and who call themselves ILADS doctors but who leave out core aspects of treatment that have been found over time to be crucial.
Does this mean patients who see any of these three doctors I mentioned won't get well? Nope, they see many patients who get well under their care. I have reports -- sometimes 20 or 30 reports who all claim the doctor helped them tremendously. Yet, there are just as many who were not helped.
Many of these patients had positive Lyme Disease tests, but why do many recover under the care of one doctor who ignores certain "standards" that the community has come to hold, while other patients don't?
Because each case is complicated by a wide range of factors. Each doctor can be "right" simply by variations of such factors. Patients who only have Lyme Disease may do quite well on only a single monotherapy that rotates rarely and that ignores co-infections (because they have only Lyme Disease, they may not be toxic, they may not have unusual genetic markers, their immune systems may be less suppressed in contrast to a patient with both Babesia and Lyme. Etc."
So, who is the right physician? Who is best? The answer is a physician with "all" the skills of those three doctors plus extensive clinical experience and who have had access to capable laboratory tools which provide objective evidence to confirm and or support their progression in the development of their understanding. The culmination of a wide range of experience in which the doctor is the closest to a cure in terms of their treatment modalities and who gets the most patients well.
This is why Dr. Burrascano was so effective. He was the figurehead, and this is why his guidelines -- in my opinion -- provide the simplest, yet most comprehensive methodology of assisting a patient in their recovery. It is flexible, yet structured. It is consistent, yet evolving. This fragile balance is not commonly found in most Lyme Disease specialists.
There are perhaps 5 - 10 specialists around the world who usually strike this balance. This is only my opinion.
If a doctor doesn't recommend probiotics, that's a problem. If the doctor doesn't consider dietary change, exercise, co-infections, -- this is a problem. If the doctor says long term antimicrobials are unhelpful most of the time for a patient with Lyme Disease, this is a problem (especially antibiotics or therapies aimed at killing an infection in some form). These are common underlying "standards" that should be abided by or built upon. Core concepts so to speak.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Mike, I have experienced exactly what you have outlined thru the years and thru the many years helping of
others with this illness. The most important ingredient is to be a well educated, proactive patient and get the most out of any visit with your LLMD. As you said, even those that call themselves LLMD's vary greatly
in their approach and knowledge. There are not many LLMD's that are all encompassing in their approach. It is our responsibility, unfortunately, to learn and educate
ourselves about nutrition, supplements,alternative approaches, treatment protocols, co-infections, labs, new infections, etc. and ask for what we what from our doctors. That is what I have always done and If a doctor won't work with me
I find one who will. And, of course, the gift of Lymenet makes helps make this all possible. This is how we most of us come to know more about this illness than most of our doctors!
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
mike, you never cease to amaze me with your words of wisdome!!
willis, god bless you for breaking it up for me/other folks with neuro reading problems! great question.
also, if we see anything that looks like your LIFE IS IN DANGER, WE SPEAK UP PROMPTLY. either we or someone else has posted here about their bad experience, and we want to caution folks.
as mike has stated, we are all UNIQUE; no one the same. some take antibiotics, herbal or supplements only, or any of the OTHER ALTERNATIVE things out there and posted here.
taking into considertion all the meds/supplements/OTC we are, it effects what is done with us.
again, mike; you've just shot the 8 BALL again and it's a sure winner! i salute you. i've forgotten, what did you do for work before lyme hit you?
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: again, mike; you've just shot the 8 BALL again and it's a sure winner! i salute you. i've forgotten, what did you do for work before lyme hit you? [Smile]
I managed to graduate from High School, but I was infected at age 9, so I didn't really get anywhere. Does bagging groceries and answering phone calls count? I've been unable to work since 2000. I'm 31 now. I wasn't diagnosed until 2002.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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