SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Dr. S new Bartonella book appears to be available on his site at personalconsult.com as a downloadable ebook. I just downloaded it but have not read yet. Cost is 35.
Note: I have no financial association with Dr. S.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I downloaded it too and quickly scanned the chapter on Bartonella Treatment. While I admit I just scanned this, he essentially says theres nothing that really works without having it relapse (other than Dr. Zhangs HH capsules).
Pretty discouraging. I'd love to hear from a patient of Dr. S on what he is using to treat (I assume Dr. Zhang HH capsules).
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
From what I understand, all patients have to sign documents stating that they will not disclose their treatment. So it doesn't appear that any patients will be able to share that information.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
That people can't share their treatment protocols with one another seems so counter intuitive to the Hippocratic Oath.
I just shelled out $35 to buy his book so you would think he get more specific about whats working (as opposed to whats not working). It also looks like theres a crazy amount of pages showing people's bartonella rash. I think thats a bit overblown.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I found it worth the 35 bucks just to learn of more options and was glad to see Cumanda as one of the potential benefits. Also ordered a couple of the other items he mentions to have ART testing done with them in the future to see what may help. I have not read the whole book yet but will over the weekend.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Yea I guess I shouldn't complain because in the end Dr. S is one of the good guys trying to fight for a cure. I may look into the HH capsules and cumanda myself.
Hopefully if he does find the "magic" bullet he will share with other docs.
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Others on this board have treated w/ Dr. S and have shared their bart treatment protocols and they were NOT what you are mentioning (HH).
Posts: 3975 | From usa | Registered: Aug 2007
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posted
do you recall what they were and if they worked? If it cant be posted here please PM me. Would love to see if the Dr. S patients would be willing to share.
I'd like to get better too. He did mention that some reported feeling better on levaquin (what im taking now) and it just didn't eradicate the bart on a lab plate. He thought there could be other healing properties that somehow alter the bart into a more manageable form.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
I order the raw herb that is in the HH capsules, Houttuynia (I get Plum Flower brand, but there may be others). It is the only herb for bartonella that has given me a definitive "hit" on the bart.
I have a very specific herx that has gone with both Cipro and Rifampin when they hit the bartonella: this bizarre finger rash flares up during the herx, then goes away (without bart treatment, it's there all the time). Also, I have cardiac symptoms that come and go with bart. treatment.
I tried Cumanda and Banderol for bart, and also take Japanese Knotweed, red root, and boneset tea, but the Houttuynia is the only herb to give me a strong herx. I found that I have to take a pretty high dose though.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Do you take this with bart abx?
Posts: 3528 | From US | Registered: Apr 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
thats great
i was hoping he would tell us something we didnt know.
sorry dont mean to complain but seriously...
he really likes to put the books out...
does anyone know the HH dose he recommends so i dont have to pay 35 to learn that?
thanks
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
That is strange.....protocols are discussed all over the place. Why can't this one be discussed?
Posts: 1366 | From Southeast | Registered: Sep 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
If nothing works...THEN WHY PUBLISH A BOOK ABOUT IT?!
Considering 99% of us have bartonella, we are all doomed.
Why not title this book, "You are Going to Be Miserable. Then You Die. Just Give it Up"
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Sad to hear there is sooo much hush hush and secrecy about bartonella treatment and what works and does not, this really does not help patients and it only makes the IDSA doctors really content as it looks as if the doctor is only after the money. And that is all about making a big profit on sick people, which is what IDSA doctors claim all the time.
Posts: 347 | From sweden | Registered: Feb 2008
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Hubby's herbalist has him taking one HH capsule 3 times daily. Initially hubby said he could feel this herb going into his brain an hour or so after he took it. He has added many more meds since he started with HH so does not notice the effect as much now -- started with one capsule HH for a week or two then added a 2nd capsule and eventually a third.
He takes this with other Bart meds -- currently Rifampin, Zithromax, Minocycline and Bactrim. Recently stopped Levaquin after about 5 months. Also on Alinia and many herbs and supplements. Neuro and G.I. symptoms which we believe to be Bart are still present. Note -- Hubby pulses meds and is still at very low dose on several of those listed.
Hubby is not a patient of Dr S.
A recent thread I read on LymeNet regarding Dr S and Bart discussed olive leaf extract -- hubby took this in the past but not the same brand discussed and nowhere near the doses listed. This is on my wish list -- will probably add to the mix in a month or two.
Think I will just wait for the hardcopy of the book. I was disappointed in Dr S's Babs book as it seemed like Art and Mepron were the only answers. Just not sure I have $35 to spend for another book right now.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
A couple of questions for those who have the book.
Does Dr S indicate how many Bartonella patients he has treated? Is it in the 100's or 1000's ???
Are there any blodtests other than VEGF (possibly) which would indicate Bart infection? Not counting actual antibody tests or bloodslides looking for the bacteria.
Thanks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I know he calls Dr. Fry all the time. That's the special lab he has acess to.
Posts: 2903 | From AZ | Registered: Feb 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks Scott.. for letting us know.
Lots of folks and mostly doctors have been waiting for the book to come out.
Bea... I also understand he has a supplement... about 20 pages if I remeber right.. that is due out shortly on updated Babs treatments.
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
Thanks Scott, you always come with innovative ideas on how to use my money. Glad to know you don't have any vested interest in your suggestions. I think I have $35 worth in quarters. Can I send them in an envelope? I guess I would have to pay extra for the weight. And your are right it "appears" to be available in his site (I guess you got the info from hearsay).
thanks,
Posts: 13 | From U.S of A | Registered: May 2008
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posted
The dosing seems kind of vague, basically a high dose over a long period of time. I have found on the powdered version of the HH herb that I mentioned above, I need a pretty high dose (1 scoop 4 times a day) to get a response, but I'm sure everyone is different.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Cobweb
Unregistered
posted
Is this in the ILADS guidelines?
You didn't say which state. I assume this must be the Dr. S here in MD.
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
No, it's Dr JS in FL.
Why publish a book saying nothing works???? that sounds bonkers and highly suspicious to me. I know of three people who have definitely, permanently kicked bart...using the fluoroquinolones!
Posts: 3528 | From US | Registered: Apr 2007
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posted
This book seems to indicate there will be another bartonella book coming out that is more comprehensive. Did anyone else get that impression?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
This may offend some of you, so I will apologize if it does. I have talked to this doctor on the phone. We had a very bad cell phone to cell phone connection and when I asked him to speak louder he immediately said I had cognitive problems. That is actually one symptom I do not have.
So, I certainly hope his research is better than his ability to diagnose! Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8905 | From Illinois | Registered: Aug 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
hiker, im sure you didnt mean to be funny, but that made me laugh.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
He indicated in this book that a more comprehensive book was coming out. This one is 75% pictures of bartonella rashes and evidence of what bartonella can do. The treatment section is slim and there seems to be not a whole lot of narrative around all the pictures.
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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Angelica
Unregistered
posted
I would like to read the third book meaning the one about Bart that comes out after the more comprehensive book.
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
What is HH? Where can you buy it without going through a health practioner? I've checked the Hepapro site. Are there any others?
Thanks, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hepapro is where u get it.
no health practicioner needed
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Wrong! NOT cured! I am soooo disappointed. It just seemed the cure to Bartonella had been too easy. I checked and my (now) secondary LLMD doctor (Dr. B in KC) had changed labs to a less expensive lab. A recent test showed me cured. I decided to be retested by my (now) primary LLMD (Dr. C in KC) and I have Bartonella worse than ever! How frustrating! I finally found this post so I could add this. I was receiving several e-mails a day asking how I cured Bartonella but no one could remember the post or some even the Web site where they read it. Sorry, for the wrong information. I remain infected with Lyme, babesia and Bartonella and who knows what else. In spite of 41 pills, seven shots a week and numerous IV sessions I test worse and worse. Close to giving up. Sorry for the "false alarm" on the Bartonella.
posted
I already ordered it the last week and I will be taking it .
I will try everyhting that is left even though I think I have been treated for bart more than anybody else here.
BUt I plan no matter what to be taking the HH capsules for a few months and see.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Once upon a time in the lyme world, LLMDs treated their patients, talked to each other frequently within their professional organization (ILADS), went to conferences where they shared research, learned from their patients, and in that way new and better ways to treat lyme and coinfections were constantly evolving.
Now, imagine an atmosphere where a single doctor within this organization claims to have "the answer," yet his patients are bound to an oath of secrecy and are forbidden to divulge it.
It's so outrageous it's almost beyond discussion.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
haha i agree michelle.
well said
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Regarding the Bartonella book. For all of you who are insulting the doctor, why not instead look at all of the other doctor's whom you have gone to see, talked to, read their information. NONE of them are doing the research he is doing -- or funding all of the research on their own with no outside help.
To clarify, this is NOT the Bartonella book he plans on writing. It was written to help the millions out there who have it, don't know it and are sick - a picture is worth a thousand words, which is why the book is so filled with them. I defy any of you to have known that some weird striation you had was actually a bartonella rash and I know no other doctor who has documented as many various kinds as he has.
Any of you who took the time would know this doctor almost lost his own child to this disease and has helped many people he will never meet - FOR FREE!
As to not giving out dosing information. If you have a brain then you know that ALL of us present differently and the treatment for any two individuals is not the same - not even two people in the same family. What works for one does not work for another - whether it be dosing, length of time or additional meds or supplements taken in combination. It would be false and stupid to say DOSE X is the definitive dose that will kill it, and it would not be true.
My own children were not able to attend school, had horrific time functioning at all and often not even able to get out of bed. HE saved their lives. I saw no less than 20 other doctor's - some of them the "experts" and none of them was able to cure my children.
Have any other doctor's published any books on these co-infections? Do you have ANY clue that it took this doctor a year and half to put this book together - in his free time (like he has any) and at his own expense. Where are all the other doctor's publications? At least he is trying to lead people in a direction that may help him.
Giving out "optimal" doses assume that the highest dosing of anything is safe for the person taking it. It assume that the dosing will not KILL the patient. This answers the question of why no "optimal" dosing is given...and it is NOT the same for everyone.
I feel many of you have listed negative, abusive comments regarding this doctor. YOU do not know him! Any textbook purchased for my children this past year has cost me on average $50 and most were horribly written and useless.
Having 40 unique bartonella findings in one place is stunning, since most of the labs done are complete junk.
Some of you even criticized the labs he uses. HOW STUPID. He is trying to help people get an accurate diagnosis by giving out the information to the world and you mock him. Your ILLNESSS is showing!
There will be a babesia update out in the new few months. HE has found that all of the treatment protocols used by 'experts' fail miserably a year after treatment is done. I personally can say this as I was negative and a year later it showed up again, after standard mepron 750 2x per day and useless artemisinin and low dose Zhang artesenuate. This protocol only lowered the body load, it did NOT cure it. NOW it is gone with a quite different treatment.
The person who made the comment about IDSA should be booted off the site. Have you no clue how many people are sick and dying of this disease and you can actually in good conscience make that type of comment? Are you a troll trying to provoke hostility?
The attorney general of Connecticut obviously does not share your opinion about IDSA . There were so many areas of corruption that if I were a lyme IDSA guideline writer, I would hide in shame. Where are their babesia, artemesia or bartonella books. OH YEAH THEY SAY IT GOES AWAY ON ITS OWN!
My children are alive and healthy. I hope you and yours are as well. HE saved their lives.
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
omg.
this site is like jerry springer on crack sometimes.
never ceases to amaze me.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I wish I can afford to go and see him!
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Some of you even criticized the labs he uses. HOW STUPID
Babesiamom...I didn't criticize the lab he uses. That lab is my LLMD, and without him, we would not have been diagnosed. We had access to that lab long before it went public.
Yes, JS does research. Yes, he puts out scads of books. I haven't read the book, so I can't make any kind of judgment. I only responded to what others said.
I may be wrong in my assumption, but it just doesn't seem fair to put out a book that looks to have promise, only to find there are no answers.
Then, again, if they actually found a cure, it would be a cause for celebration.
Posts: 2903 | From AZ | Registered: Feb 2006
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this site is like jerry springer on crack sometimes.
never ceases to amaze me.
We should call him to check out if we could have a chance at an episode. You know, first they bring the patient with the LLMD telling their story, and then they bring and IDSA guy (or guys). Then they start arguing, yelling at each other, then that bald guy comes to separate them, while the audience keeps screaming : take it off !, take it off!
Posts: 13 | From U.S of A | Registered: May 2008
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
lol
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I live in the same state as this Doctor and am also interested in hearing more about him. He is certainly prolific in terms of writing books. ,
I have read some of the comments related to "secrecy". I do not know what level of this might exist with respect to this doctor, but this site certainly promotes it. This is being done for some reason that is probably legitimate, otherwise why would it be done.
I am looking at his book on Babesiosis, which seems to be a reasonable technical book. I am unfamiliar with the chemical interactions discussed in this book as well as the biochemistry. The writer though has obviously immersed himself into the subject. He also has an extensive bibliography, citing numerous references with which he seems well versed in.
It is hard for the lay person, even the relatively experienced lay person to understand what to hold on to. This is especially concerning since secrecy is a primary element of so many discussions on this subject.
It is true that these diseases are frightening and that noone wants to become very ill or worse.
It is true though that a person who is saying that they were treated by this doctor has gotten well. It also seems to be true that persons who have gone through extensive treatment by him, do not seem to be blogging or complaining. There is not an internet full of people saying "I underwent a full course of treatment and I didn't get good results."
I respect all of the comments in this thread, including the frustrated ones, the advocacy, and the lunacy. But there is only one person in this thread who was treated by him and this person is happy with their treatment.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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Just because someone can write a scientific medical book does not mean that they
1) have all the answers
2) have a good bedside manner or good patient interaction -- sometimes highly educated people can be very condescending or can't speak on their subject in such a way that a nonscientific or less educated person can understand them
3) no complaints doesn't mean no dissatisfied patients -- if you spent the huge amounts of money to see this doc (one of the most expensive LLMD's I think)
you might be embarrassed to admit you made a mistake
or then there is the confidentiality clause that was mentioned
or maybe you or your child is still too sick and you are too busy trying to function on a day to day basis to spend time and energy "bashing the doc".
Also, as I mentioned earlier I am curious as to how many patients this doc has treated for Bartonella -- he hasn't been an LLMD for that many years. Bartonella or BLO (Bartonella Like Organisms) wasn't much recognized at all by LLMD's prior to 2003 and some still don't acknowledge it or treat for chronic Bart.
Hubby has not seen this doc, but has seen half a dozen supposedly top docs -- well educated and authors of popular medical books -- I think there is only one of the group I have ever recommended to anyone -- he doesn't know Lyme, but is a very good neurologist.
And hubby's complaints are not just related to the fact that these docs are not Lyme literate -- a doc can still be helpful if they are openminded and really want to help the patient -- that's what referrals are for as an example.
Because of hubby's experiences, I am always skeptical of doc's who write books. They have to prove themselves the same as any other doc.
If you do see this doc, I hope things work out for you.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I was not at all impressed with this book. jmho
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Wrong! NOT cured! I am soooo disappointed. It just seemed the cure to Bartonella had been too easy. I checked and my (now) secondary LLMD doctor (Dr. B in KC) had changed labs to a less expensive lab. A recent test showed me cured. I decided to be retested by my (now) primary LLMD (Dr. C in KC) and I have Bartonella worse than ever! How frustrating! I finally found this post so I could add this. I was receiving several e-mails a day asking how I cured Bartonella but no one could remember the post or some even the Web site where they read it. Sorry, for the wrong information. I remain infected with Lyme, babesia and Bartonella and who knows what else. In spite of 41 pills, seven shots a week and numerous IV sessions I test worse and worse. Close to giving up. Sorry for the "false alarm" on the Bartonella.
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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jamescase20
Unregistered
posted
Bart MIRICLE
bart likely uses a efflux pump like other drug resistent gram neg or pos use to purge or pump out there abx.
This is not pie in the sky garbage.
This is research.
Give you an example of real world exp with bart.
I took a levqquine and get the typical bart herx right side only migrain like headache about 1 hour after dose right, okay, now, I then put 3-6 crushed black pepper corns under my tounge, let it fester there then swallow it about 1/2 hour later..btw black pepper in a lab study blocked the cipro efflux pump in a gram neg MRSA strain. The studies are on the net.
So guess what happened to my right side headache? adding the black pepper AND levquine?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
CherylSue asked on page one of this thread about this.
--
For Houttuynia EXTRACT you can check here, too:
www.kalyx.com - just enter "Houttuynia" in the search bar. There will be three names in ( ) . . . these are just different names for the same thing - in this case.
They have it in many sizes - but it takes some time to look all around their site. (and, hint: they also have sarsaparilla, coptis, corydalis, etc. . . all my favorites. )
Be sure you get the powdered EXTRACT.
This might need to be balanced with other ingredients though, so check on that. My ND changes my formula around a bit about every three weeks.
and ask them to send you a couple "gram spoons" for accurate measure. This very important.
And, during these hot summer months keep herbs cool and dry. A dark glass jar is best to transfer this to after it arrives.
I've actually been off everything for a few months and am ready to go to work with this. I recall, of all things, HH helping the most with vertigo and ear pain.
[ 06. July 2008, 06:07 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
BabesiaMom:
EXCELLENT phrasing and caution:
Your Quote:
" . . . As to not giving out dosing information. If you have a brain then you know that ALL of us present differently and the treatment for any two individuals is not the same - not even two people in the same family.
What works for one does not work for another - whether it be dosing, length of time or additional meds or supplements taken in combination.
It would be false and stupid to say DOSE X is the definitive dose that will kill it, and it would not be true. . . ."
posted
Babesiamom could you post what treatment this was that worked for you rather than leaving us just as uninformed as his books? People just need help that's all any of us are saying. There's no need to cure cancer if you're going to keep it to yourself.
Posts: 499 | From Indiana | Registered: Oct 2007
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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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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
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: 8905 | 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
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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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