I had a chance to read the book prior to it going to print and found that it continues in the tradition of the previous books in providing the most current information available.
I do not benefit financially from this post.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
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You also get an eBook with some good information on 4 supplements that may be helpful for people with LD.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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Vermont_Lymie
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quote:Originally posted by SForsgren: You also get an eBook with some good information on 4 supplements that may be helpful for people with LD.
Hi Scott, Since it is free, what are the "Four Immune-Supporting Supplements Every Lyme Disease Sufferer Needs to Know About" ?
Posts: 2557 | From home | Registered: Aug 2006
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SForsgren
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It is free with purchase of the book. Though free, it is copyrighted and thus I cannot share the details here.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CD57
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posted
That's crap....why would he not make that public? This guy annoys me with his marketing, has for a long time. Is obviously interested in making the most $ of sick people that he can. Nice!
By the way, I believe two of them are mangosteen and co-enzymes.
Posts: 3528 | From US | Registered: Apr 2007
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SForsgren
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CD57, your entitled to your opinion.
I, on the other hand, think that Bryan does a great service to the Lyme community. He spends his days (and probably nights) doing research and writing books with the goal of providing useful information to those of us with Lyme. He should be compensated for it. Doctors charge money and in many cases provides far less useful information.
In fact, I know of doctors that have found his books to be quite informative themselves.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
A little additional info on Author mentioned above on Lyme Disease 2008 Annual Report He is also author of the Poison Plum and is attending our Florida Lyme Conference "Similarities and Paradoxes in Chronic Illnesses" being held at the Vinoy in St. Pete on January 19th. Bryan will be signing his books for attendees which will be for sale. Hope you can attend.
SandiB
Posts: 991 | From USA | Registered: Aug 2001
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CD57
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Yep, Cave, sure do agree!! For what it's worth, my LLMD says she is tired of both Rosner's and Dr J.S. out of Florida's "relentless marketing" also.....what's going on here?
Sorry, I'm just suspicious of people trying to make a buck off of a sick and desperate group of individuals. Maybe too cynical? Posts: 3528 | From US | Registered: Apr 2007
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SForsgren
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Comments:
1) The author of this book is not the author of the Poison Plum. Les Roberts wrote PP and Bryan Rosner wrote this 2008 Annual Report.
2) The book as I understand is some original content from Bryan and some contributed content from others.
3) If we remove everyone that makes money related to helping people with Lyme disease, there will be no one left to help. We'll be on our own. A place I choose not to be.
4) It amazes me that people here have so much time to try and tear down the work of others. If that energy were only spent on trying to get well...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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sparkle7
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I don't have a problem with anyone making money through the internet.
I read one of Rosner's books on the use of the Rife (type) machines.
I asked my doctor (who's opinion I respect) & he said to avoid the Rife machines.
I don't know if it's true but I've heard that negative comments about Rife machines are removed from the Yahoo group which is moderated by Rosner.
There are many other people who have radio shows geared towards alternative medicine & sell things that they recommend.
It's useful to listen to them once in a while but I don't run out & buy everything they recommend.
The same can be said for publishing books or selling stuff over the internet.
He's not an evil man or anything & he has a right to make money from his research - but I am going to procede with some caution in regards to his marketing of materials.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Greatcod
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posted
Where there's suffering , there's a buck. I have made a list of supplements I have tried that didn't do dodo--mail me a check for $5, and I'll let you know what they were.
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SForsgren
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Do you also have such a list for all the antibiotics that didn't do diddly? May need to charge even more for that one as postage probably will cost more...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
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Sparkle,
I think your comments are good ones. I think that everyone needs to make decisions about what risk they are willing to take. Having an open mind (which it sounds like you have) does not mean that you have to come to the conclusion that any therapy is correct for you personally. I think that is an excellent way to approach treatment.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
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I am not suggesting that this is not his business. Sure marketing is a part of it. Getting the books published likely costs a good deal of money.
General comment (not directed at Tosho):
Everyone has two choices.
1) Buy it 2) Don't buy it
Mine is in the mail.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CD57
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As someone else said so eloquently early on: "my mind is open, my wallet is closed." That about sums it up for me.
I also agree that where there's suffering, there's a buck. If I had a buck for how many expensive supplements or machines I've bought since starting treatment, each time wanting to believe the practitioner who sold them to me that this was the silver bullet as they promised, well, I'd be rich! Everyone was happy to take my money.....
And I also don't have a problem with people making money through the internet.
Scott, where do you get the idea that abx are a failure, as you seem to indicate in your last post? I'm confused. Everyone I know in the Lyme world has gotten nothing but better, even to full remission, with abx.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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One last thing: if someone could post about the wellness they have gained from following Rosner's recommendations, I sure would appreciate hearing about it.
Did I mention that my mind is open? Posts: 3528 | From US | Registered: Apr 2007
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SForsgren
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I am glad to hear that you know people that have gotten well with antibiotics.
Personally, I have not met one person with chronic Lyme disease that got completely well with antibiotics alone. If they are "well" now and all that they did was take antibiotics, it is my opinion that recovery may be short-lived.
Note, I say "alone". I do think they have a place. I also think integrative/alternative/complementary options have a place as well.
Both have good options and bad options. Both are tools in a toolkit. The more tools we have, the more likely we will be to get well.
Sure, I've wasted money on some bad supplement choices. I also wasted money on some bad antibiotic choices.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
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There isn't necessarily a group of people that get well or don't get well from "Rosner's approaches".
He promotes a number of things that worked for him and others. So your question would have to be about each of those options. He provides information, not medical advice or a protocol.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CD57
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I think California Lyme is one of those that is completely better on abx. Not sure if she will be reading this?
I think that when bartonella is recognized as a large part of the reason why people have not gotten better in treatment, and people are subsequently treated for this, there will be success stories abounding. I am hopeful for all of us!
Just my .02.
Posts: 3528 | From US | Registered: Apr 2007
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Boomerang
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Greatcod, you always make me laugh!! Thanks for the chuckle!
Posts: 1366 | From Southeast | Registered: Sep 2005
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djf2005
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i agree that its just a book, and why is there again, so much controversy about it?
its JUST a book, buy it, or not.
who cares whos making how much money?
arent we all here to get our lives and health back?
if this book helps even one person, then it justifies its existance, bryan rosner, and scooby doo.
im not saying i have not taken part in arguing pointlessly on lymenet before, but please, for petes sake, this is ridiculous.
everyone is entitled to their own opinion, for sure... but think about this..
how many people will find out about this book from this thread that otherwise would NOT have known about it? it is in fact by a MD, which, one would think, is awesome. something you can ADD to your lyme information arsenal as is is never ending?
just my 2 cents, happy new year everyone.
i wish we would all come together, and focus ALL our energy on healing and the process of...
humbly,
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
robi
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There are soooo may options out there. This is just another.
I appreciate both Scott and Bryan for what the have offered to many in this community. I have benifted personally from info I have received from both of them. I have also beneifited from advice and treatment from my LLMD.
Alternatives and allopathic medicine are both valuable in recovery. I would not exclude either one. Nor would I expect to pay for one and not the other. It really is a personal choice for each to make.
I appreciate all those who help. I make my own decision on where to spend $$. I have spent money on both alternative and allopathic medicine that did not help. If it was easy, none of us would be here.
Thanks to Scott and Bryan for the help they offer. Some I have used, some I have not.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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merrygirl
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posted
I have a few questions.
Does Rosner have LD? If not why is he involved in LD?
Is any money he makes from his books donated to charity like LDA, LDF??
Melissa
Posts: 3905 | From USA | Registered: May 2007
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SForsgren
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He does/has had LD. It is all discussed in his books. He started a publishing business to publish books about Lyme Disease. I don't know what does or doesn't go to charity, but it is part of how he makes a living.
The whole "what he does with his money" thing just makes no sense to me. Either the information and books are useful to people or they aren't.
If people are going to skip reading the books on some principle of what the author does with his money, it's really that person's loss as they are now working through a complex disease with the same information they had previously. I, for one, want to learn everything I can to maximize my chances of recovery.
The only people I hear complaining are the ones that haven't read the books...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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merrygirl
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I am not complaining, just trying to figure things out. I don't know anything about him
I believe that people either get the book or don't.
Melissa
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robi
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This is really unbeliveable!!!!!!! I have never asked if my LLMD donates her proceeds to charity, have you?
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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I think some of the older posters remember when Bryan was a member of this site and they didn't like him.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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CaliforniaLyme
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posted
In my experience of leading a TBD Support Group and running a Lyme disease hotline for the last 8 years, people who stick on abx tend to get vastly better, symptom free while on maintenance abx or full remission.
That said, MOST lYme patients do MANY adjunctive helpful therapies- some of which are just great- like HBO- and acupuncture- and herbs- and not PURELY abx. Two of our local full remissions involved IV IGG as a central part of their tx along with abx. In 8 years, we have never had a full remission locally that I know of which anyone has ever attributed to Rife or herbs. Our local strain? Perhaps!!
CD57, I am 100% symptom free with abx but I am still on them because I am breastfeeding.
I do know plenty of people who are in full remission with abx. SO does everyone here. Just read the success stories in this last week on LymeNet- Lily- Koryn- two people right there in full remission with antibiotics!!!
Success JUST with abx has been documented even by the bad IDSA guys for years- you think Steere threw in a little Rife with his IM Bicillin? Nope, don't THINK so!!! And he's on the shall we say, conservative side already? And it's been documented right here on LymeNet, just look at Lily & Koryn...
I also know plenty of people like me symptom free while on maintenance abx, although I could be in full remission, I don't really know as I am breastfeeding (have been for almost 3 years now, I am soooooooo ready to wean) and won't take the chance in going off until that's done- and before that I was pregnant- but one month pre-pregnancy my doc was going to declare me in full remission and take me off all abx if I hadn't gotten pregnant-
I don't know a single person who is in full remission from chronic Lyme without abx.
I think Bryan Rosner definitely wants to make money in this life and he is upfront about it.
There would still be plenty of people on this forum if all the people who make money off Lyme patients were gone. I would be here, Cavey would be here, you CD57 would be here, many people would be here.
I think Bryan Rosner is straightforward about what he does. He doesn't blur boundaries. That's healthy. I appreciate that. Bryan Rosner is SELLING something, yes, and he's upfront about it.
But no, not everybody is out to make a buck- some of us think there's something valiant about poverty*)!*)! (joke)
If I knew of 4 supplements that were great for Lyme patients I would just post it here for everyone to read.
But people are different and Bryan Rosner is honest about who he is and what he is doing. I think it would be nice if we had a products section here where he could post himself.
Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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SForsgren
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Which marginal and unconventional treatments? Antibiotics? He does talk about these.
I think his Top 10 book was pretty well-rounded and unless you've read it, one wouldn't really be able to comment.
It seems to me to be a dangerous proposition to comment about ones work when one has not him/herself read it.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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map1131
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My PCP Internist knows and supports me using rife machine and any other alternative things I do to help me. This same doc has been there for me since '99. He's one of my angels. He called it lyme 10 days after I came down with the flu-like illness from hell.
Read my recent posts about him sticking his neck out to try and take care of me and lyme without positive Western Blots(until Igenex & LLMD) for almost 3 yrs.
Bryon is another one of the people I call one of my angels. His work and writing on rife and lyme disease came into my life before he was making a living writing and giving presentations on lyme & company. On a Sat morning April '03, his work opened my soul to something else to help me, because ABX were killing me, slowly but surely.
I don't work for him either. I've only supported him with buying "When ABX fails...Rife & Lyme Disease" book. Besides my rife machine, the book was well worth every penny.
It gave me the knowledge to start and proceed with my rife treatments. I haven't cured myself yet. Still trying to figure out which bacteria, virus, parasite, fungus, is keeping me ill.
Just found out results today to some recent blood work. Let's see, HHV-6 positive, C-reactive protein positive and mycoplasma pneumoniae positive. That's all from a lab that wouldn't know lyme antibodies if it bite them in the rear.
Doc didn't even script anti-virals or abx. He knows what I am going to do. After reading info from Sarah (California) this morning, I've really got to consider babs. I wrote on my to do list after reading her post, babs? artemisia?
After 4 yrs of 0 abx, in Oct I took Biaxin for 10 days for recent eye infection (staph). It would have to be life or death for me to go back on abx now. I ended up using the rife machine to get rid of the staph that left my eye and went to my throat and ears for days from taking Biaxin.
Bryon (aka skyking), thanks for all you do for the lyme community. I'm happy you are making a living helping others with lyme & company.
Thank the Lord, Jesus, for opening my eyes, ears and heart (and my brain) to other treatments. I will beat this illness or knock it back far enough to leave me alone someday.
Thanks Scott for posting about this new book. May it change someones life for the better.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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SForsgren
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cave76,
You made the comment about his book being about marginal and unconventional treatments.
He has a significant amount of information on antibiotics. So are you suggesting those are marginal and unconventional?
You suggest that it might somehow be dangerous for people to read his books. Is that because they might somehow not pursue antibiotic treatment? If so, that logic makes limited sense to me since he does talk about them in detail in the book as well.
Have you read any of his books??
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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oxygenbabe
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I wish Bryan well but 1) rife is unproven and could imo damage cells and increase risk of cancer esp if used every day. Look at all the literature on cellphones, cordless phones, power lines and microwaves 2) salt/c is very dangerous in some 3) Marshall Protocol is extremely dangerous to some and has led a few into near kidney failure, or permanent cardiac damage, and apparently (haven't checked up on recent news) Aussie Barb, the one on the protocol the longest, recently ended up in the hospital on IV abx and still having pancreatitis, anemia, and needing to have her gallbladder out--ie in serious trouble 4) Schaller--go look on ImmuneSupport threads, he's uniformly garnered very negative "reviews" by those who've gone. He's insanely expensive and I haven't heard reports he's helped anybody
The net Bryan casts is indiscriminate, that's the problem. He mixes good info with bad. For those who can discriminate it may indeed be helpful because he is casting a wide net with lots of info. For those who can't it could be dangerous.
But I don't mind him earning a living this way, more power to him.
Posts: 2276 | From united states | Registered: Jun 2004
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SForsgren
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I support free flow of information. I have found Rife, Ozone, supplements, detox, etc. all to have a place and would not have appreciated having information censored. Since no one knows how to really solve the puzzle of chronic Lyme disease consistently and with a defined recipe, I think that everyone should be able to work with their doctors and make decisions about their own health care. Censoring information may be as dangerous or more dangerous than the possibility that someone may be harmed by reading it.
I don't see many people concerned with the number of gallbladders people have lost with Rocephin or the host of other problems that conventional drugs also bring with them. Why is it always those treatments not created by the drug companies that people seem to worry about?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CD57
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I think we all support free flow of information, Scott. Thank you for providing info about the book's availability.
I see plenty of postings and have heard lots of concerns about gallbladders and side effects of abx. I see them every time I check in on this site. Don't you?
Posts: 3528 | From US | Registered: Apr 2007
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sparkle7
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posted
It seems to me that the real issue that we all have regarding Lyme is that we are angry (or maybe I'm just speaking for myself...).
There's just such poor treatment of our illness all around. The doctors are subject to witch hunts, people are fighting about whether to use abx or not. There isn't enough research. The tests are inaccurate. We can't get disability if we are too sick to work... It just suxs all around.
I think if Rosner was an MD, it probably would make matters alittle less contenscious. Or, if he didn't market his book so aggressively (?).
I think that Rosner marketing his book so aggressively just peeves some people. They don't like to think that he's capitalizing on "their" suffering.
He's been through it, too - though.
I think this debate has been going on in the AIDS community & with cancer patients (& probably other illnesses) whether to use the standard drugs or some alternative therapy.
It's kind of odd that the "alternative" therapy for Lyme is huge doses of abx. Then, there are the "other" alternative therapies like Rife, herbal protocols, etc.
For some reason it seems more vehement with Lyme... and Rosner's book is another target for people to direct their anger towards.
He appears to be another snake oil salesman, uncaring doctor, or corrupt insurance company.
I guess having a situation where doctors are being persecuted makes things worse, as well.
It's hard to tell who to trust or who's information is accurate.
We all just have to experiment to see what works until there's more accurate information as to how to treat Lyme.
"One person's meat is another person's poison..."
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I have witnessed reports of neutral, good and bad results with just about every protocol. I don't think we can know what is going to work or not work. Most protocols could have risks. I think each person needs to evaluate their options and carefully monitor results.
I do not like to see this board start fighting again over abx and alternative care choices. We've already been through that recently. Some people do ok on abx and some don't; some handle complimentary treatments and some don't. We can't solve this one!
I think we can give information, but I don't like to see an unpleasantness returning here. We all have different experience and opinions. Let's share the info but not attack those who are sharing.
Posts: 13171 | From San Francisco | Registered: May 2006
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CaliforniaLyme
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Good points OXy, Robin & Pam & Cavey & everyone!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CD57
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yep--happy New Year to all!
Posts: 3528 | From US | Registered: Apr 2007
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Greatcod
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And the first amendment...caveat emptor, I guess.
Truthfinder
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posted
Thanks, Scott.
Funny, I always heard that people who are able to do something they love and believe in, AND can figure out how to make a living DOING it, are truly blessed. Perhaps Bryan is truly blessed, then.
Okay, let me get this straight.....
If an LLMD wished to participate on LymeNet, he should NOT be allowed to do so because every word coming out of his mouth would promote his own business of making money off of sick Lymies, correct?
This is not an ``orthodox'' medical forum, or a science forum, or an abx-only forum..... it is a LYME FORUM. Therefore, if you wish to create exclusionary policy regarding who can or cannot participate based on marketing of products or services or potential ``conflicts of interest'', be willing to adhere to your own policy. Therefore, no LLMDs (and any number of related personnel who could directly benefit from Lymies) are allowed to participate here.
Speaking of which, somebody posted the link to the Lyme Chat audio page and I went there last night because I don't know anything about the live Lyme Chat thing..... and I see a big old advertisement there..... What's up with THAT? Why is that allowed? (I hate to put the link here because of the advertising, but I would like some feedback on this. I'm sure there must be some reasonable explanation......) http://www.lymediseaseaudio.com/lymechat.htm
Sarah said: ***'' I think it would be nice if we had a products section here where he could post himself.''*** Me, too! I think there is still an active thread about this over in Off Topic. I would love to see some more suggestions on this.
***``CD57, I am 100% symptom free with abx...''*** Yes, but you did other things in addition to abx, like the Ledum, etc. Just wanted to clear that little item up for CD57 in case there was any confusion.
Cave said: ***``It's the way his 'treatments' are promoted here (not in the financial sense) here by others as the One True Way that is misleading.''*** Promoting abx as the One True Way is equally as misleading.
***``But this forum has drifted into a lot of dis- and mis-information about the TBIs.''*** According to whom? I believe that statement is purely a matter of opinion. Especially since no examples are offered.
***''Plus a dearth of understanding about the science.''*** Then by all means, post more about the science! Help us to understand it better. Enlighten us, please.
Scott said: ***'' Why is it always those treatments not created by the drug companies that people seem to worry about?''*** I keep asking the same thing, and don't get any answers either.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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CaliforniaLyme
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I did Ledum for one week, Mepron for 2 years, Artemisia for one year and ingest a lot of rosemary in my diet.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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merrygirl
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I put the link to the chat site on here simply because I wanted to chat with my fellow Lymies on New Years Eve.
(We had great fun by the way )
I have nothing to do with the chat site other than participating in chat.
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