Is there a good place anyone can refer me to that discusses ALL the protocols (forget the IDSA, pretty over that one) in ONE place in a compare/contrast sort of fashion so that I can decipher it all without my brain spinning out?
For instance, I was hanging out on the Marshall Protocol site this morning and I simply feel overwhelmed.
I don't even have Lyme and I'm wondering how all of you brain fogged people can keep up with all of the new and old information!
Do you all WORK with your LLMD's, initiating new treatment ideas and protocols with them?
Or do you let them do their business without interfering in "their" protocol much?
My son started seeing Dr J - do I just sit and hang out and let him treat him? Or do I say "Hey Dr J, I know you're highly respected in this field by ILADS, but what do you think of this idea?" And then just trust his opinion?
Trusting doctor's opinions is what got us into this mess, so I'm not to keen on that.
I want to trust, but I've also heard so many stories by now and on here of people trying a gazillion things to get better.
There doesn't seem to be one right way or one cure (like there are many strains of the bacteria I'm aware) so how do I know we're on the right path?
Why do the MP followers seem self-righteous about their path?
I know I've asked a lot of questions but I hope you can intuit or make sense of what I'm getting at!
Posts: 43 | From Southeastern US | Registered: Jul 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I can't answer all your questions b/c, but I think that if it were me and Dr. J was my child's doctor I could be comfortable knowing he was being treated appropriately.
Dr. J has a solid, respected reputation and many years of success behind him.
In my case I trust my LLMD. His protocol seems to be less aggressive than some, but it is also tried and true. Sometimes I do wonder if I am on "on the right path" as you say, but those times pass when I look back and see the progress, slow as it is, that I have made.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Forgot to mention -- I do not have that particular book by Dr. Schaller, but I do have two of his Bartonella ones and one of his Babesia books.
Although I found them somewhat useful and am glad I purchased them for reference, they were quite pricey and the text was written in an irritating elementary style.
If you would like to purchase a good Lyme book that discusses treatment, supplements, diet, etc., I suggest "The Lyme Disease Solution" by Dr. Kenneth Singleton. You can order it from his website or Amazon.com.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
The most important thing you can do is keep some sort of symptom log. Record daily meds, any significant changes in symptoms -- new symptoms appearing or symptoms getting better etc. Also record any herb or supplement changes.
Some people rate each day on a scale of 1 - 10 or rate each of their top symptoms.
The reason this is so important is that there is a lot of overlap between tick-borne illnesses. For example are sweats from Lyme, Bartonella or Babesia etc -- time of day is one clue here.
The most important aspect of treatment is to treat all known coinfections -- whether they be bacteria or viral or parasites etc.
It depends a lot on how long the patient has been sick and also just how sick they are as to how much a parent needs to be involved.
Obviously you would want to read about possible side effects of any meds your child is taking.
2nd suggestion is to keep a medical file of all lab tests -- get copies of previous tests if yo have not already done so.
I do think it is important to find a good doc you can trust -- and I think you have. But even then I would at least want to know the general background regarding the docs treatment. You need to feel that you and the doc are a team.
Hubby has changed Lyme docs several times -- mostly for financial reasons or because we needed someone with more expertise regarding coinfections.
As a new patient we try to provide the doc with any info he needs and let him start the ball rolling. Usually after 4 - 6 months it will become more of a give and take as the doc looks for feedback on what is and isn't working.
Every doc has favorite meds and treatment protocols. People who have been sick a long time quickly learn that doc "A" treats agressively with IV's and doc "B" does not use any alternative treatments etc. Adults are usually looking for a doc who shares their treatment philosophy.
The best starting place for a newbie would be to read Dr Burrascano's guidelines. Then read the Healing Lyme book for a very good overview of the specifics of how the different infections affect the body. Even if you are not into herbs and supplements that book is still a good place to start in my opinion.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Yeah talk about a mess... For past 2 month I spend most of my time researching various strategies, treatments ,drugs ,supplements and even alternative treatments.
There is so much controversial stuff out there its mind boggling. Almost on every single issue. And it does look like there are grain of truth here and there but overall they form into chaotic undiscernable mess
For example Vitamin D theory by Marshall makes a lot of sense from what I gather (and if I test high on 1.25 D that would be very strong proof for me personally). While the protocol itself looks bogus and illogical to me
And that is with every single thing out there. And Drs... They never have time for any serious discussions , I consider lucky if I can get a good test out of them, so sorta hard to rely on their opinion in the absence of information of what serves as basis for their decisions .
Given the multitude of malfunctioning systems in my body I did not come anywhere near to satisfying treatment strategy.
Posts: 856 | From MA | Registered: Jul 2009
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