posted
I am not embarrassed to say my experience as his patient was disappointing.
A real doctor doesn't treat by selling his patients his books and talking to them over the phone.
His success, IMHO, is due to his skills in marketing and publishing. This isn't to say he isn't sincere, because I think he is. He's sympathetic.
But I won't give him any more money.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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tickbattler
Unregistered
posted
Yeah, I bought the book. Maybe he knows something about bart, I don't know, but his approach smells a little.
He clearly is in this to make $$$. He is definitely into the marketing of his books and himself and this makes him appear less professional, less credible, and frankly, a little cheesy.
posted
hi This is extremely simple I think. If sombody has a cure for bart/ a way to make peoples lives better- tell everybody as quiskly as possible. Gale
Posts: 268 | From europe | Registered: May 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
good points jd.
heres a question for YOU
what does it matter?
were here to try to figure out better ways to treat our illness/es
that being said, i understand where you are coming from, but, again, your comments and revelations regarding dr JS and his CO conspirators really do nothing to propel our movement foward.
if you have any ideas or thoughts on how to TREAT bartonella efficiently and/or other TBIs i would love to hear.
if not, its just more wasted breath.
(not trying to be harsh here, just "blunt" )
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i would like to hear from anyone who has first hand experience with dr js
i have questions myself
i get a bad feeling when i hear him speak...and even somtimes when i "hear" him write. but maybe it's just a personality thing
llmd's i respect are not"praising" his books...but not putting them down either. these llmds have told me yes or no about other tx and docs...but no comment really about him either way
he is supposed to write a book with dr j-THE dr j (peds) and if that happens that will mean something to me
he writes a lot-i would like to know if the info is credible
he is also involved in a lab ot test he created
his site is different than any other ... i'm really curious about if he is seeing patients-so any first hand info please pm me or put it here if you think that is ok
thanks
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I went to this doctor and I can tell you that he is after the money..he researches all other doctors and scientists and then comes up with his own protocol..he is a dangerous doctor and has you sign pages on pages of documents stating that you wont sue him..he thinks that he is the authority on babesesia and bartonella.. that he knows more then our scientists that work at the labs that look into these infections and his claim to fame is all those blood tests that dont show anything of value but only to him...please..what self respecting doctor advertises on the internet? what hospital is he associated with? it was a load of bs...the only good thing was the fry test..also the amount of money is enormous that you must pay..and you must call him so he does not have to pay the charges or that in my opinion..that the call cant be documented for length of time for others to see..really think before you sign up with this doc.. it cost me 2000 dollars so think twice...some of his treatments are dangerous and they dont use fda approved meds..if you get hurt you cant sue..he did not tell you that either did he.I dont like to rock the boat but what I am saying is true..my llmd is great and he is not cheap but I get results and know that he is very careful of what he prescribes..so just keeping it real..
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
I purchased this book- it sucks--- it's just a rambling that is full of half baked facts. Sorry it's just not a good quality publication. Under researched and no good science.
I also have heard from several people that this Dr S makes new patients sign dozens of non-disclose and confidentiality statements before agree to any treatment.
This is crazy. I worked with thousands of Dr's as a practice management consultant- and never heard of anything like this before. Expect for the Beverly Hills plastic surgeons that treated celeberties--- that want to protect their patients, not themselves.
Why would it be that no other LLMD, infectious disease Dr or top dr's in the country request such disclosures, besides HIPPA.
Also if your going to write medical books please publish original or new research. This could have easily been a white paper, or 10 page book.
Sorry when you ask for money/ sell something- you open yourself up for praise or criticism.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
JD is a real and great person; but after signing 120 pages of non disclosure agreements, can you blame him for not wanting to publicly announce he just saw Dr. Schaller?
His experience may have been disconcerting, humiliating, intimidating.....after signing all those agreements, who wouldn't want to CYA?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I read the Babesia book, and picked up the black and white Bartonella picture book when it was fresh. I found the pubs to be useful because the author compiles a ton of information and references.
But I found the books very hard to read and to believe. To start the format is poor - you can read a 300 page book in a couple hours if the font is 14 point. And the writing is poor - it reads neither like a doctor nor a writer wrote it.
But above all there is a what I struggle to describe but would call a tone that I cannot trust in full.
Those two cents are not intended to discredit the research or the practice of the author. He has offered the (sole) comprehensive publications on two challenging infections, and I understand his approach to treatment has offered hope to people who had not had it.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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posted
This doctor has the tendency to go to sites like Amazon and comment on negative reviews of his book--for example accusing a woman who did not like his bart book of having bart. He used his real name, then the next day changed it to a fake name, and then when critized for diagnosing a woman he never even talked to he deleted most of his posts.
I am the one he talked to on the phone and had a bad connection and he said I had cognitive memory problems. That is one symptom I do not have.
I noticed he uses pictures from Fry lab photos--the one that say "suspect mycoplasma or hemobartonella." Am I correct in saying that Fry Labs is not sure what this organism is and that it may be a betaproteobacteria, which makes the pictures in error for a bart book?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10192 | From Illinois | Registered: Aug 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My comment here is in regard to this post below.
JD was banned from Lymenet and his post here deleted. Obviously the person who posted this made a successful effort to get him removed.
YES he is a real person, YES I know him, and YES he is a friend of mine. The poster below sent me a private message accusing me of being wrong about him, demanding to know if I "really" know him, etc. She is obviously terrified she unknowingly shared her personal story with a Schaller associate and not a real Lyme patient. She pretty much states this in her post.
I am very upset that he has been targeted like this. He is a GREAT guy. HE IS NOT A TROLL.
It is true he lied when he said his comments were NOT based on personal experience. He DID see Dr. Schaller, very recently. He lied out of fear. From what the poster herself indicates here about her own fears, I don't understand why she finds that so hard to believe.
Is this a reason to get banned? What rule was broken here? I am very saddened that this very young, very wonderful guy has lost his access to the support he needs here.
I have also received pm's from other people who are TERRIFIED of this doctor. They will not speak up. I do not know this doctor personally, but I have bought two of his books.
I find it hard not to speak up when I feel injustice is occuring. No big surprise there. I have no desire to go digging around about Dr. Schaller, but I did find JD's comments completely consistent with others.
Furthermore, the below poster is clearly so intimidated HERSELF by Dr. Schaller that she has gone to great lengths to shift the focus off her story. JD did NOT lie to get his info. The poster below has a lot of nerve in my opinion to post all of his pm's to her but not tell anyone anything about what she shared.
I know she is scared of Dr. Schaller, she told JD that over and over. Not only was her daughter a patient of his, but she lives very near to him. I sympathize with her fears, but she had no right to throw JD under the bus and LIE about him in order to take the focus off herself.
Why did JD get banned? He is a young, fairly newly diagnosed Lyme patient who is just looking for help.
And why is everyone so scared of Dr. Schaller?
quote:Originally posted by JKMMC09: Everyone-- Please beware of Jd99304, he is lying.
Earlier this week, JD99034 sent me a PM saying he WAS A PATIENT OF Dr. S in FL.
quote:Private message from jd99034: Hey I saw your post on Dr S, and I recently had my first appointment with him. I left feeling disconcerted and my instinct tells me something isn't right. What do you know? I have researched somewhat and found some othe folks opinion of him, that kinf of backs up my opinion, but I'm wondering if you know something I dont. I have already decided I need to find a new LLMD. Its true that Dr S will prescribe the meds that so many lymies have a hard time getting but this isn't what worried me. Please get back to me is you can help with any info. thanks- jd
I responded, thinking I was helping a fellow Lyme patient from making the same mistake I did, but I in NO way want to be part of any "LLMD bashing", jd LIED to get his info.
After I told jd my story he said,
quote:Private message from jd99034: Wow that is a sad story. Mine is not that bad, as I'm not as sick as your daughter seems to have been, and I'm glad to hear she's doing better.
I went to Dr S because I thought he was the best around, as he's the author of books, and many publications and claims to be more up to date than any other LLMD.
Well my appointment with him, that lasted 2 1/2 hours was spent mostly by him talking about his books, and bragging about his knowledge. He put on a show for me that was so obvious. When the pharmacutal rep came in the office, he spoke loudly enough so I could hear him talking about how he was the worlds foremost leader in babesia and bartonella research. I also found he was extremely egotistical.
Now, JD, is saying he has NO personal experience w/ Dr. S?
quote:Originally posted by jd99034: I should make clear, however, that I have no personal experience with this doctor, and what I know comes only from speaking to former patients of his, which will remain nameless.
What is the truth here?
Did you trick me into sharing my story with you, Jd?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I provided information about an LLMD that can be hurtful to an LLMDs career, can be used against him, etc. to help out a fellow patient. I did NOT provide that info to be used against the LLMD on a public forum! That is the issue here. That is why I got upset.
I did not "demand" you to tell me anything. I never said he was a "troll", I did not lie about anything. Jd lied about being (or not being) a Dr. S patient.
I believe ANY person would find it suspicious, if they received PM's from someone claiming they were a patient of a certain doctor, asking you "What you know" about him, etc...Than, after they have your info. they post an "expose" on the doctor in question, claiming NOT to be a patient, but only to have info. from "Former patients"....Sorry, but that didn't sit right with me.
I am not "scared" of Dr. S, I never said I was. I don't know why Jd is so terrified that he had to lie about having a simple appt. with the man! Several others on this thread have admitted to seeing Dr. S. I don't know what the big secret is.
I am not afraid to tell others my story, as I have told many on this forum and elsewhere already. Just PM me and ask nicely
The point remains-- I provided Jd with information, personal information, that can be used against the doc. I don't agree with the LLMD bashing that commonly takes place on this site, never mind my own experience w/ Dr. S.
If it takes deleting my post to keep the peace on this forum, I will do it for the sake of those of us who are trying to get support and learn on here, not continually cause confrontation and drama.
I have never been involved with any of the drama on this forum before, and I don't intend to start now.
quote:Originally posted by Tracy9: My comment here is in regard to this post below.
JD was banned from Lymenet and his post here deleted. Obviously the person who posted this made a successful effort to get him removed.
YES he is a real person, YES I know him, and YES he is a friend of mine. The poster below sent me a private message accusing me of being wrong about him, demanding to know if I "really" know him, etc. She is obviously terrified she unknowingly shared her personal story with a Schaller associate and not a real Lyme patient. She pretty much states this in her post.
I am very upset that he has been targeted like this. He is a GREAT guy. HE IS NOT A TROLL.
It is true he lied when he said his comments were NOT based on personal experience. He DID see Dr. Schaller, very recently. He lied out of fear. From what the poster herself indicates here about her own fears, I don't understand why she finds that so hard to believe.
Is this a reason to get banned? What rule was broken here? I am very saddened that this very young, very wonderful guy has lost his access to the support he needs here.
I have also received pm's from other people who are TERRIFIED of this doctor. They will not speak up. I do not know this doctor personally, but I have bought two of his books.
I find it hard not to speak up when I feel injustice is occuring. No big surprise there. I have no desire to go digging around about Dr. Schaller, but I did find JD's comments completely consistent with others.
Furthermore, the below poster is clearly so intimidated HERSELF by Dr. Schaller that she has gone to great lengths to shift the focus off her story. JD did NOT lie to get his info. The poster below has a lot of nerve in my opinion to post all of his pm's to her but not tell anyone anything about what she shared.
I know she is scared of Dr. Schaller, she told JD that over and over. Not only was her daughter a patient of his, but she lives very near to him. I sympathize with her fears, but she had no right to throw JD under the bus and LIE about him in order to take the focus off herself.
Why did JD get banned? He is a young, fairly newly diagnosed Lyme patient who is just looking for help.
And why is everyone so scared of Dr. Schaller?
[ 16. December 2008, 10:09 AM: Message edited by: JKMMC09 ]
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
My humble opinion is that JD be allowed back on. As Tracy said he is a great young man who really needs the support this forum offers.
He did indeed see Dr. Scaller as this is something I have spoken with him about over the phone and through PM. I will refrain from commenting on how his experience was relayed to me, and it's really a moot point anyways.
I don't think he was trying to stir the pot, just trying to share his honest opinions and personal experience. I also don't think he was aware of all the rules of Lymenet or the consequences of discussing those experiences, wether it be openly or privately.
For those reasons, I really plead for the moderators to reconsider this ban. Perhaps contacting him and sending him a copy of LN rules, terms and conditions along with a stern warning?
It would be a shame to just send him packing....
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
A new member was banned only for posting about his LLMD appointment because he didn't yet know the board rules? I probably don't have all the facts but if this is true, it is very sad... Posts: 408 | From California | Registered: Apr 2008
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bettyg
Unregistered
posted
polar blast,
please break up your solid block into short paragraphs for us neuro lyme folks so we can read and comprehend especially since i'm involved in referring folks to llmds; BIG THANK YOU!~
tracy, please DELETE drs. last name in several places to just DR. S per lymenet rules; you know better than this.
to the folks who used the quotes, would you edit your posts to delete the BOLD CODE marks so it's just regular print vs. the awful BOLD that gives me/others migraines.
just go to the posts where you quoted folks, and click on PENCIL to open up text
delete the beginning of 2nd line where it shows [/QB] just delete these 5 things, and it's regular type. BIG THANKS from my eyes!
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