still recovering from grueling trip to/from Ohio but had to warn you to be VERY wary--there is a blatant ad campaign going on for a new Lyme book

"Lyme Survival Guide" by Connie Strasheim

she is part of a group that seems to eschew ethics and "publishes" self help guides that are less than informative and only serve to earn the authors money!!!Or urge others to buy things that support their pocketbooks!! They also support a number of people who lack credentials or training and yet charge for medical advice and sell various herbs and supps and "machines" too!!!

if you email me at finrussak@aol.com I will give you the growing list of names to be wary of...it sickens me that many of us have to even keep these lists!!

I have looked at a few of the books and they dont say anything new, and worse, often suggest treatments that can be harmful as well as useless in the fight against Lyme.

A better book for those struggling would be Ken Singelton's new book ( he is an MD with Lyme himself) called the Lyme Disease Solution--well written and comprehensive, and notably he only suggests the alternative protocols with strong results and least harm--the ones missing??? well, all of the ones supported by that group!!

again as always when a group is so dead set on making money off the desperate, we need to be armed with information to protect ourselves and so we arent given bad or even dangerous advice.

be well

Finette

Dr. Singleton is a stone's throw from me, here at work. I live just south of Baltimore, but I work just north of the city. His offices are in this area.

I hope his book helps people, I may buy one myself. I must admit that he is a busy doctor. When I was looking for an LLMD, his was the first office I called...and here is where I say some not so nice things about his practice....

They told me I had to write an essay, no less than one page but no more than two, talking about my recent medical problems. They said he would read it and would call me back within two days if he wanted to take me as a patient. I'm not dumb, so I hedged my bets and called a couple other offices, eventually getting an appointment in less than two days with an LLMD in Rockville, Maryland.

Four days later I got a call from Dr. Singleton's office, saying they would see me, but didn't have an appointment for four months. I know this can be normal, but I was a bit put out that it took them so long to call back after I jumped through their essay hoop. I have stayed with my doctor in Rockville.

Having said that, I will say that Dr. Singleton has helped a lot of people and has a great reputation, so I would agree with you and endorse his book. He is known to use a combination of supplementation and prescription meds to help patients. He would never endorse all these fad cures, that's for sure.

Thanks, Fin.

Tom

Im not sticking up for anyone ( LLMD or not) playing it so safe but you have to wonder whether theyre to blame OR those outside trying to discount our dx like the insurance companies

and as for my dysautonomia--there are maybe 5 top experts in all of the US--the waits are often up to a YEAR AND if you dont happen to fit a particular protocol theyre researching they wont even see you OR talk with your current Drs--I was in hospital with a near terminal prognosis and my cardiologist spent HOURS trying to get medical advice and also trying to fly me Angelflight to any of the 3-4 centers doing that...NONE would accept me--liability--once I took off Id be their problem in transit--yet they knew w.o help Id get worse--and did--that was my second and third brush with death.

Finally a very nice Dr in one center gave long distance consult/advice to stabilize me and start tests for rule outs...and I became a little stronger and they threw me into the back seat onto Ohio--my first 10 hr torture ride and I got into Dr Grubb who dx me and saved my life!!!!!

so that kind of stuff--choosing pts, CMA forms, long waits is a product of US medicine and NOT limited to Lyme Drs!!!!

Finette

thanks!!! this is EXACTLY the sort of info we need to share so we can make fully informed decsisions

btw I never saw Singelton and wasnt recommending him--just his book---a wealth of very good recent info!!!

I have a habit of not throwing baby out with bathwater--in other words we can be wary of a person and still think his book has valuable info!!

F

Tom from the Baltimore area here.

I went thru the essay hoop with Doc Singleton and didn't get a call back for five days. It upset me, and I was lucky to get another doc before that.

He's not a bad guy, though, and don't worry, he is not taking new patients anymore. For this reason, and that he has published his name as a Lyme doc, it is not a violation of the rules to print his name here on the boards.

But, I appreciate you mentioning the other group that may be doing things to harm others. Anyone has the right to mention that here. Maybe you can give folks permission to send you a PM if they want to know more.

Thanks.

Tom

Thank goodness we have this support group to help each other find the good docs.

Peace,

Connie

I can understand TT's view, because I get cautious when I see all this different types of treatments that are just WAY out there. I have never been a proponent of all these folks that suggest you have a dental exam done and have all your fillings removed and replaced. That seems to push things a little too far in my book.

I agree with the cautionary note on this organization, but still consider Dr. Singleton's book to have some valuable information for those needing to know about Lyme.

Tom

people writing useless books and selling at exhorbitant prices given low cost of self publishing; people calling themselves "Lyme coaches" and charging per hour for nothing new that isnt available for FREE easily elsewhere ( and then BRAGGING at internet marketing seminars how theyre getting rich and how others can prey on the desperate too)

; people sitting for a few hours in a seminar and then using that to claim medical knowledge with a CNHP certificate and yet have NO training or instruction( in one well known case the woman doesnt even have a high school diploma---and yet she has a site on yahoo and a booming phone and email consult business ( diagnosing and 'prescribing' without ever seeing you or looking at medical records)--and "coincidentally" happens to sell the supplements she suggests

, people with websites claiming to have "the" answers and yet when looked at closely 50% or more is MIS information and plain wrong and dangerous too.Plus its simply repeated and copied from other less trustworthy sources---not bothering to go to the source.

At least Singelton has his med school training and has his patients' experiences and is trying to add to the body of valid information we need to share. And he used a good publisher with fact checking and references. Too bad too many of the others out there cant say the same thing!!!

F