SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I just finished 8 of 9 chapters of the new Dr. S book "Lyme Disease Solution". I think the book is EXCELLENT and would recommend it to anyone with Lyme. It is a great collection of information about LD that I have not seen so completely put together in any other place.
If you purchase via Dr. S web site, a portion of the proceeds goes to ILADS and LDA as well.
posted
I have just finished the book. It is very comprehensive, clearly written, and oddly soothing in tone.I wish I had been able to read this a year ago.I recommend it very highly.
Posts: 520 | From Maryland | Registered: Jan 2007
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lymeladyinNY
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posted
I plan to buy the book next month - LLMD took most of my social security check this month.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Thank you Scott. I immediately purchased this book. I'll read it, and so will our naturopath. She is now our LLND for our son.
She has been pouring through everything she can get her hands on regarding Lyme. She has the ILADS guidelines memorized.
Interestingly enough, as she has become more interested in our son's case, she had her own son tested. He has one of the co-infections. The prevelance of this disease is shocking.
Thanks for the tip. Keep them coming.
Posts: 44 | From Prairie du Sac | Registered: Jan 2008
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-------------------- Adversity is the diamond dust heaven polishes it's jewels with. – Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time – all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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posted
I'll take a look at this. It may be a nice overview, from the excerpts I read. However, I'm not sure if it will have a lot of "new" information to most of us. Thanks.
Edit: I feel I should say this, despite the fact it will probably not be received all too well.Not to be a jerk, but... why is it that all these LLMDs are putting out Lyme books, rather than put their efforts towards getting this research published? I mean, a thoracic surgeon doesn't write a self-published book about Thorasic Outlet Syndrome, directed at lay-people, right?
I'm not saying there isn't any real research being done, but it seems like people are capitalizing on the relative dearth of knowledge on the subject to make money. Is it because the assertions in these books wouldn't stand up to scientific scrutiny? Is it for profit? If you're trying to raise awareness, why not put the entire text online?
I mean the fact that one of my fellow posters said s/he can't afford this book because LLMDs have taken all of her social security check struck a chord.
I have nothing against this doctor personally and the information seems solid, but I question why legit LLMDs are writing books that get shelved next to "50 cures they don't want you to know" and "Utilize crystal watchamacalits to cure your cancer" at Borders. This hurts both our, and their credibility with getting this disease addressed seriously.
Posts: 685 | From East coast, USA | Registered: Jun 2006
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SForsgren
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Member # 7686
posted
I disagree. I've been studying LD closely for almost 3 years and chronic illness for 11. I learned several things from the book and adjusted my protocol as a result of the recommendations in the book. The book is well worth the 29 bucks or whatever it cost in my experience.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I think that you guys are way off with your judgment. It is very difficult to make money on a published book. Harry Potter is a rare exception. Some writers can make decent living if they publish often, such as one book every few months and if the books are translated into other languages.
Scientific papers are commonly off limits for doctors running family practice. It is very hard for them to do the proper analysis of data without support of a university.
Posts: 98 | From BC | Registered: Feb 2005
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posted
this doctor is NOT out to make money. he charges me $135 per visit, and tries to spread them out over two months when possible. this is unheard of for an LLMD. my son's LLMD is $300 a month! some of them charge $700 for the first visit!
He had lyme and suffered for years before getting diagnosed and treated. he is just trying to get the word out to people so they don't have to suffer like he did.
Posts: 615 | From maryland | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Black said..
"Not to be a jerk, but... why is it that all these LLMDs are putting out Lyme books, rather than put their efforts towards getting this research published?"
Good question Black.
May I suggest?
Why not read the book first.. then if you still have questions...
Rather than speculate or suggest the LLMD's should be doing even more than they already are to help patients, just contact the LLMD and ask them your question directly?
Black said... "This hurts both our, and their credibility with getting this disease addressed seriously."
After you read the book, if you haven't learned something or you don't feel it helps your credibility or theirs...
Perhaps you can suggest to the author information you would like to see published that will help folks?
Or better yet... maybe even write a book yourself that you can publish online for free so others can be helped?
That would be a win-win situation for all.
And just so folks know.. I've heard a lot of comments on this book... more than any I've heard about other books to date... and all have been very positive so far.
Even the "seasoned" patients who know a great deal about TBD's have learned something from it... and have been helped.
If you get a copy and read it... you can then share it with others... and/or donate to your local library so those who aren't online and don't have access can have the benefit of this book... and maybe they won't have to suffer.
There are many folks in this situation that would surely appreciate your donation.
And it would be a real nice thing to do in an effort to educate others.
Don't forget... May is Lyme Disease Awareness Month!
posted
I don't really understand your implication that this book will hurt our credibility.
I feel strongly that it took some courage to publish this book. And it is carefully enough written that I think it GIVES us credibility.
It's a sane, solid book and I wish I had found it two years ago. It would have changed my life for the better much faster.
I also see Dr. S. As roro says, he is compassionate and fiscally responsible on behalf of his patients. He is 1/4 the price of my daughter's LLMD.
Having spent alot of time writing grants and conducting research, I am also puzzled about how you feel our practicing LLMDs can devote time and resources to large scale research.They barely have the time to squeeze us in as patients.
Somehow we need to advocate for the development of of funded medical research opportunities just as they exist for cancer, ALS, AIDS, etc.
You're asking alot of our front line people to do things like publish books or conduct research on a volunteer basis. Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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sometimesdilly
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posted
Who would really expect that a well established doctor treating any other another disease would publish a serious book in full online?
And, who seriously believes that if such a doctor did publish online in defiance of all his profession's norms, that the book would be considered more creditable by his peers or by the press, rather than infinitely less credible?
If your concern is, as you say, protecting the credibility of llmd's, may i suggest that what you write here is counter to that aim?
In reality, you suggest that llmd's in general are in it for the money and that this llmd in particular is greedy because he wrote a book he dares to charge for.
It also seems a bit.. dismissive to state that likely there isn't anything of worth in the book, when you seem to not have even seen or read it yet?
And for those who aren't very familiar with how the medical universe works-- clinicians treat patients, researchers research the science.
It is extraordinarily rare to find a doctor in any field who does both- and NEVER in general practice. If you are seeing a doctor who does both, you may safely assume you are in deep doo, because you are seeing a specialist-guru who mostly does research, but ventures out of his lab to check you in- his new lab mouse for whatever research he is doing.
And after that touch on the head by Guru, you do not see Guru again, you see his underlings, and you will NEVER be able speak to Guru on the phone.
To newbies- dr. s is one of the best in the field, i have no doubt his book is worthwhile- he is too busy helping Lyme patients to have squandered time writing a meaningless book to hear himself talk.
It is always good advice to consider the motivations of those planting seeds of doubt...
dilly
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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Michelle M
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Member # 7200
posted
quote:Originally posted by sometimesdilly:
It is always good advice to consider the motivations of those planting seeds of doubt...
dilly
On the contrary, I would submit that it is good advice to tolerate a difference in opinion without the necessity of roasting others alive.
Blackstone's posting history does not support the casting of aspersions on his "motivations" for "planting seeds of doubt."
A healthy discussion can withstand dissent. Without it, it is little more than a fan club.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Okay, a few things to address here, now that I have my tea this morning
Please note that I didn't say that the book was devoid of any useful information - I said that from the excerpts I read, I didn't see a lot that would be new to patients who follow this forum. I got the impression it a good (perhaps the best?) overview of what most of us know to this point about the disease and treatment protocol. Others have said this isn't the case and I still plan to buy and read this book before making the final judgment.
To Tincup - I intend to purchase the book and if I find it helpful in some way, I will purchase another copy and donate it to my library. That's a good idea
The credibility issue I state is not with the quality of information contained within, but the difference between "Professionals" and "lay people". Many doctors publish things all the time, into research based journals, trade magazines, and the like. This is about doctors sharing material directly with their professional peers; having it reviewed and accepted by the medical community. This would be something like the ILADS internal newsletter I've been hearing about.
When a doctor deviates from this perspective, and instead writes directly to lay people, especially with what is still considered controversial theory, it raises many questions in the eyes of the medical profession. Typically, a lot of information say...on gallbladder surgery, before it reaches WebMD or the like has already been discussed in a professional capacity , peer reviewed, and accepted. When this is "sidestepped", rightly or wrongly it reflects badly on the doctor.
I'd like to talk about "That shelf" at Borders that I'm sure we're all familiar with. Part of the health section, it contains books written by a variety of people (A select few are MDs, many are PhDs, and some lack any sort of medical degree). Nearly all of them address some sort of chronic condition that is either not well understood by mainstream medicine, or has a small but vocal group of patients protesting the treatment. Many of the books postulate some unconventional treatments (Hense my tongue in cheek "Cure Your Cancer Through Crystal Whatchamacalits" reference earlier) and champion this treatment protocol, despite the fact there is no non-anecdotal evidence for it or perhaps in some cases, no evidence at all (The guy who sells that "cure for diabetes that nobody wants you to know about" was indited for fraud recently. He's actually a used car salesman!). People buy these books because, like many of us, they are desperate for knowledge and desperate for treatment. I feel it is immoral to pray on these desperations, which is exactly what at least of a percentage of these authors do.
That said, I DON'T feel that this LLMD's book belongs here. I think its better than that. I think its probably "good enough" not to belong on that shelf, and that's why I don't want to see it there. It is written by an actual practicing LLMD, and from the best I can tell so far contains mostly ILADS accepted science etc. Thus, it should be going to the professional and research journal circuit. It should be listed listed in the IDSA's journal, to show them some new information! However, the mere fact that it sits on "That Shelf" at Borders, will make the medical community more wary that this is Just Another Kook (tm), and less likely to listen. That's why I feel it could hurt the credibility of the book itself and its author.
From Joysie -
[Having spent alot of time writing grants and conducting research, I am also puzzled about how you feel our practicing LLMDs can devote time and resources to large scale research.They barely have the time to squeeze us in as patients.]
I would like to ask how they can devote time and energy to the writing, editing, and publishing of books as well. Perhaps they could put forth the same effort towards organizing more research. I often hear that LLMDs don't have time to "deal with the system", but yet a number of them have time for peripheral endeavors like writing books for and sold directly to laypeople.
From Dilly- [Who would really expect that a well established doctor treating any other another disease would publish a serious book in full online?] I don't expect them to publish a serious book to lay people outside the medical community AT ALL, before it is accepted into the community.
[And, who seriously believes that if such a doctor did publish online in defiance of all his profession's norms, that the book would be considered more creditable by his peers or by the press, rather than infinitely less credible?]
Again, this is exactly the point. Any publishing (online, in print) made for those outside the medical community before being addressed by the community will result in less credibility. After the choice has already been made to publish for laypeople in any form, what is the impetus to sell the book? That is the question I ask.
[If your concern is, as you say, protecting the credibility of llmd's, may i suggest that what you write here is counter to that aim?] Please take a look at some of What I've posted above as to why it could hurt an LLMD's credibility.
[In reality, you suggest that llmd's in general are in it for the money and that this llmd in particular is greedy because he wrote a book he dares to charge for.] I have nothing personally against this LLMD. I am simply evaluating the data I've been given. I think SOME LLMDs (more on that later) are greedy. I don't know about this particular one. Others have attested he isn't so there are of course other possibilities Maybe he really published this to help people and just needs to recoup cost of publishing? Maybe he didn't think of the same things I did about how circumventing the "normal" scheme of how things are done in medicine to be accepted, or maybe he came to a differing conclusion.
[It also seems a bit.. dismissive to state that likely there isn't anything of worth in the book, when you seem to not have even seen or read it yet?] Please see what I've written earlier.
[And for those who aren't very familiar with how the medical universe works-- clinicians treat patients, researchers research the science.] In most of these cases, clinicians don't write the books either. Researchers do, after their research has been accepted and "processed" so to speak.
[It is extraordinarily rare to find a doctor in any field who does both- and NEVER in general practice. If you are seeing a doctor who does both, you may safely assume you are in deep doo, because you are seeing a specialist-guru who mostly does research, but ventures out of his lab to check you in- his new lab mouse for whatever research he is doing.
And after that touch on the head by Guru, you do not see Guru again, you see his underlings, and you will NEVER be able speak to Guru on the phone.
To newbies- dr. s is one of the best in the field, i have no doubt his book is worthwhile- he is too busy helping Lyme patients to have squandered time writing a meaningless book to hear himself talk
It is always good advice to consider the motivations of those planting seeds of doubt...]
The reason I write things like this is precisely the fact that whenever there is dissent, or even the thought of an LLMD being anything but a perfect, infallible, beacon of personal and professional integrity, there is a huge backlash of patients who put so much faith in them - and that is something I find problematic. We are all desperate to get well, and others know this. I think SOME others (LLMDs or not) exploit this because they know we are just searching for answers and are willing to try anything. That is not to say that all LLMDs or any other sort of medical caregiver is vicious and profit driven, and I'd be happy to elaborate further on some of the things I've noticed that make me cautious, but for the time being, I think I've written enough. Posts: 685 | From East coast, USA | Registered: Jun 2006
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sometimesdilly
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Member # 9982
posted
Michelle-
you said-
" I would submit that it is good advice to tolerate a difference in opinion without the necessity of roasting others alive.
Blackstone's posting history does not support the casting of aspersions on his "motivations" for "planting seeds of doubt."
A healthy discussion can withstand dissent. Without it, it is little more than a fan club."
----------------- Ummm.... I don't see anyone roasting or being roasted alive here today.
As far as casting of aspersions and a healthy debate. Maybe we differ about the definitions of each?
The first cast of an aspersion, which is what i responded to, i took to be Blackstone's, which was that lately llmd's seem to be acting out of greed, and or capitalizing on patients' despair, by writing books for laypeople that laypeople cannot access for free.
You see no casting of aspersion there? I did, though Blackstone clarified (his? her?) position with a second post.
A non-weighted, unslanted question very open to debate would be a straightforward--- should llmds publish books for a layperson audience, or does that hurt their or our credibility?
Blackstone and I seem to disagree on the question, but i have no problem with that discussion or differing points of view.
Last, one's defending a LLMD or LLMD's in general does not equate with unthinking blind loyalty, devotion, or unskeptical judgement about a llmd or llmd's in general.
I'm sure there are bad apple llmd's-- human nature is human nature. But it is also clearly the case that llmd's as a whole are under real, severe, and continuous attack.
For that reason in particular, I'm very leery of conversations that contain unsubstantiated allegations or broad generalizations that discredit llmd's.
dilly
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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posted
knowledge is power. to me: quality information is weight in gold on this subject, so i like to pick it up wherever i can from those willing to share it.
hey scott, does his book deal with co-infections; particularly mycoplasma and bartonella?
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Dilly,
I can appreciate your desire to protect LLMD's.
However, that is not what this is really about.
You have basically accused someone of intentionally "planting seeds of doubt." You suggested that others examine his "motivations."
That's pretty personal. That's a roasting, in my book. It doesn't 'zactly sound like the stuff of Sunday tea.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
On another note, I read the whole book and found it to be excellent.
He explained things in such a clear way that I felt like I FINALLY understood some things that were previously flying over my head.
Dr. S. was once my LLMD. Much of what he writes he tried to convey to me during our limited appointment times. I felt like the book "fleshed out" a lot of what he was trying to tell me when I was a newbie in his office!
I left him only because I moved too far away from his practice. He's a great guy.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Blackstone, I understand your point, but you are judging this book before you read it.
there are 10 pages of references citing research papers about lyme, the controversy, seronegativity, persistence of infection after antibiotic treatment, etc.
yes, this book is aimed at the layperson, he wrote it for the patients, there are many people out there suffering who do not have internet access. this book can reach them.
but I also think it is worthwhile for the general practitioner. most GP's need a book in layperson's terms, because they obviously do not have time or understand how to read the research papers and make their own informed decisions. if they did they would not blindly follow the IDSA.
there are other books out there written about lyme disease but they are not written by doctors, they are written by lyme patients. Dr S is both an MD and a former lyme patient. that make him more credible to the layperson
as for what shelf the book goes on at the book store, that is unfortunate. but I do not think you can generalize all the books on "that shelf". many are written by doctors and are science-based, even if not widely accepted by the medical community
if you think a book should be written that is only about the controversy and the research papers that support our view and is aimed at doctors, then maybe you should write it yourself. but i doubt that it would be generally accepted by the medical community anyway, no matter how scientific it was.
most doctors see a huge number of patients a day, have a patient scheduled every 10 minutes from 8am to 5 pm. they do not have time to even do their mounds of paperwork and return phone calls, never mind read research papers. so they trust others to do that for them.
"don't judge a book by its cover" Posts: 615 | From maryland | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Black.. good morning.
Glad you could comment.. and even more happy to hear you may donate a copy of the book to the library! Excellent! Thanks!
You will never know, you might save someone's life.. or at least make it not so miserable. Good for you!
You said.. "I said that from the excerpts I read, I didn't see a lot that would be new to patients who follow this forum."
Actually I am with you 100 percent on that. Ho hum.. another Lyme book.
That was also MY impression... so I wasn't real excited about it either... not at all. I mean I was glad it was being said and done.. and appreeciated the effort.. but personally I had no hope of it being about anything I didn't already know or have access to.
However, I am surprised that I keep hearing unsolicited comments about how it has helped even some of the long timers.. so it has sparked my interest.
I also want to mention.. and I know YOU know this.. but maybe others don't.. or they may forget??
WHAT? A Lyme patient "forget"??? Unheard of!
Many LLMD's are doing what they are doing.. risking their necks and treating hundreds of quite difficult patients (to say the least)... and trying to help as many as they can..
Because they (and/or their families)were "victims" of a bad health care system when they got Lymed.
Dr. Sherr's story comes to mind as a perfect example.
To this day she is as dedicated as they come... because she walked many many miles in our shoes.... and being a doctor didn't get her any closer to decent help than you or I could get.
So the motive for writing a book is often one that is genuine and sincere.
Knowing this author, Dr. S, and having sent countless numbers of patients to him over the years.. and after hearing back from many them...
I'd have to say I can send folks there and they rarely have any problems .. and I know they are better for the effort and satisfied with him.
I also would like to say that he has dedicated the book to two of my all time favorite hero's.
Some of the people who stood tall while being pelted with opposition from some of the ugliest people I've ever heard of...
And who said the ducks aren't going to hurt you or your children on MY watch.
The ones all of us owe our lives to... directly or indirectly... for their years of work. Of course I mean...
Dr. J and Dr. B.
Oh.. and I want to mention... the book is written considering those who have trouble reading or seeing the print.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Michelle- that is your take, and what you see as the basic point, but it neither describes my intention nor what i see as the basic point.
Mt advice is general, not personal, and I stand by it: Lymenet consumers of info should question the motivations behind posts and posters that plunge into the murky waters of discrediting, without any substantiation, those who are not here to explain or defend themselves.
That is not my definition of free discourse.
As I said before, the discussion Blackstone seems to have sought could just as easily been had, without including extraneous and derogatory comments that others- not limited to me- see all posts- felt attacked this particular llmd and/or others.
more than 'nuf said.
I've been here going on 2 years and have posted nearly 2,000 times, and if anyone cares to read through that thicket of posts they can make up their own minds whether i come here to Lymenet to help and be helped and to promote Lyme activism, or if am the roasting people alive- stirring up dissent kind of poster.
disclaimer- I ain't the sultanese of sweet- that would be aliG, but there can be only one sultanese, and that throne has always been occupied by sweet ali.
dilly
Posts: 2505 | From lost in the maze | Registered: Aug 2006
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TerryK
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Member # 8552
posted
LLMD's are among a very elite group in that they have the clinical experience in treating chronic lyme disease. To a patient, abandoned by the mainstream medical establishment, their insight is invaluable, especially to those who cannot afford an LLMD.
In my view, the book has a lot of good solid information. It is well written and helpful.
I have no problem paying for a book that has so much valuable information specific to chronic lyme and I see nothing wrong in this doctor charging for his book.
For some reason, people seem to expect LLMD's to work for little to nothing while they think nothing of having their insurance company pay other M.D.'s for useless appointments where only pallative treatment is offered, or worse yet, damaging treatment.
As far as damaging credibility, I don't think it will make much difference in the scheme of things. I've seen the head of the IDSA in my State flat out say on public television that LLMD's are out for money.
The IDSA perpetuate that thought at every opportunity. It is one way that they can discredit LLMD's. So, with or without books for patients, the IDSA will endeavor to discredit LLMD's.
I applaud this LLMD for having the guts to put this info out there for the many needy people who are desperate for help.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I applaud also. I haven't read the book yet, but I know that Lyme books helped me help myself while I waited three months for my llnd. I personally am thankful that Dr.S took the time to share with others what he has learned. This is not an easy disease, and we need as much information as we can get.
Sunshinyday
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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posted
Why would an LLMD write a book for the public to read as opposed to writing scientific papers?
Perhaps because he wants to get it to an audience that might read it and benefit versus an audience that doesn't want to know and is bent on denial.
It makes perfect sense to me and indicates he is interested in getting the information to those who will actually use it.
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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posted
oh, and BTW a % of the price of the book goes to ILADS (or LDA?) I forget which
Posts: 615 | From maryland | Registered: Oct 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Both. It is split between ILADS, LDA, and a research program.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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WildCondor
Unregistered
posted
Thank you Scott!
I started it last night and it does seem to be a very well written new book. Looking forward to the rest.
I remember 11 years ago when I first began searching the internet and researching Lyme disease, there were no books available on Lyme disease! At least now we have a pretty excellent array of educational tools to look into.
I think it's great that more LLMD's are writing books. The more info we can help get out to the general public, the more lives that can potentially be saved via education and prevention.
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map1131
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Member # 2022
posted
Some people just hate people that try to make a living writing about what they know and have learned about lyme disease & company.
That includes this LLMD or skyking (Bryan & Rife Book)or any other lyme literate person. Let's keep everyone in a closet and give them abx & pain & depression meds for life and hope and pray that the pharmaceutical companies continue to make the same old same old rx's to cover up our symptoms.
After all we wouldn't want anyone to discover the "cure" they might get rich doing so? Lord knows we wouldn't want that to happen? Dr B gave up his practice, IMHO....so he could go out and do the research that truly is going to change the way lyme & company is treated, researched and studied.
Dr J is dedicated to helping the children, the young and innocent, one child at a time. He has to spend his extra time between patients....defending himself in a court of law, talking to peditricians and parents around the country about why his only answer for the children with TBD's is long term abx, nutritional support, supplements, or anything else that has no FDA approval, etc.
I mean we all know if it's not FDA approved it's all voodoo? FDA doesn't approve of long term abx for super bacterial infections either or do they?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6454 | From Louisville, Ky | Registered: Jan 2002
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