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Robin1237 posts
8 Replies
Gabbie - October 23

I am posting this under a new "question" in the hopes that all those using this site will read this. With almost every question and comment, there is a posting from Robin1237 insisting that all of us have lyme disease. Several of us have asked Robin not to continue to push her opinions about lyme. We are all here to support one another because either we have been diagnosed by our own doctors (and I'm certain, competent ones) or we may suspect that we have fibromyalgia. Fibromyalgia is strange and confusing all by itself without someone throwing in their insistance that what we are suffering from something else. I think I can "speak" on behalf of others when I ask you again to please stop posting comments about lyme after every question about symptoms that we, fibromyalgia suffers, are enduring. I know of 2 people that were diagnosed with lyme, were treated soon after a tick bite (which is very important for treating lyme) and their symptoms did not disappear as you say yours have. So, I suggest Robin that instead of cramming the lyme disease down our throats, why not be grateful that you were very, and I repeat very lucky ,that the doctors were able to treat and "cure" your lyme after being bitten by a tick 25 years ago. I am certain that doctors today are more aware of lyme symptoms and I think it's safe to say they are quite capable of diagnosing and differentiating between lyme and fibro. As a fibromyalgia sufferer, I try very hard to keep a stiff upper lip so to speak and continue to try to live as normal a life as possible. This site has been such a great help to me, a place where I can go to "talk" about fibro and also share my thoughts and possibly encourage others to keep going. In reading other posts, I can see that this site has also helped many, many others. I would think you would want to stay with the many lyme discussions sites and tell those people about how you were cured and give them some hope. We have fibromyalgia ,Robin1237, there is no cure and what we need is to talk to people with the same syndrome (if that's what it's called), not be told that all of us have been misdiagnosed.


lisa1 - October 23

Gabbie, Well said.


islandguy - October 25

Almost every post that I have read today on this site has a "copy and paste" version of Robin's opinions. Frankly, I don't read them but they are annoying. If this site is being monitored possibly it could be addressed as it has been addressed by many members of the forum to no avail. We are all here for one reason, to find some comfort from Fibromyalgia symptoms and terror. I do not have lyme ! I have Fibromyalgia. Should this continue I would suggest that we all become members of the lyme website and in using Robin's on her website ! Possibly everyone that thinks they have lyme....actually has fibro ! How would she cope with that...?


SarahO. - October 25

My name is Sarah and I had fibromyalgia 10 years ago for 2 years+ and it is 100% gone for years now. I know about 15 other women and men who also had fibromyalgia diagnoses and had their fibromyalgia go completely away with the exact same treatment I had. I am not offering any kind of treatment or product.

I got sick and developed fibro and was told that.I just had to live with it. But I got Lyme treatment and it went away 100%. My phone number is 1-831-662-2895 and I am in Aptos, California. Please call during West Coast daylight hours- my phone is a hotline for Lyme disease.

I am and have been for the last 8 years now the facilitator of the Santa Cruz, California TBD Support Group (if you live there you should know that we have the highest % of Lyme in the state) and we have over a dozen ex-fibro people who have come through the group and recovered, who have no pain, no symptoms.

I will NOT post here over & over. But I know why Robin did- because she knows me and people like me- and she is someone like me. She wanted to help you guys.

From my experience facilitating the group- I am a professional counselor by the way- I can tell you that people often have no idea they have Lyme because their doctors have no idea about Lyme.

I was in excruciating agony 24 hours a day, 7 days a week.

For me, it took 18 months of antibiotics including 9 months of IV Rocephin- but for me, like Robin, it was worth it.

I have NO pain today and live a normal life again- and have for over 7 years.

I NEVER thought I would have that, ever again.

I won't cut & paste things here and I am sorry you have been bothered, but I know that Robin was coming from a good place- of knowing the joy of NOT having ANY pain!*)!!!! It is a wonderful thing- as
you guys, regardless of the origin of your fibromyalgia, can appreciate.

Take care with your paths to wellness.
I meant it- anyone feel free to call during West Coast daylight hours.
Please don't crank call me.
I am sincere and honest here.
Best wishes,
Sarah Olson
which meets tonight by the way-
we meet the 4th Thursday of every month
7-9 pm at 6401 Freedom Blvd, Aptos, CA
which has 17.8% Lyme in Nisene Marks


islandguy - October 25

I got it...a long time ago ! But posting once is does not have to be on every post. That's a bit obsessive, don't you think.


skidoo - October 26

Yep and if that one post gets buried, all she has to do is reply to it and bring it to the top. No need to reply with the same exact anser to dozens of post. and it is plane WRONG to tell someone over the internet what their illness is -- someone who is not a doctor and never met the person they are diagnosing. Now we got a multi-level marketer replying to every post. sheesh.


SarahO. - October 27

Islander & peoples, Robin is a support group leader and so am I- and both of us get SO MANY people diagnosed fibro who suffered NEEDLESSLY for YEARS before they realized, Heck, my Rheumie doesn't know (*!^! about LYme & TBDs, and got help.

Seriously. We both have seen so many people suffer and then GET BETTER!!!

I met Robin in Sacremento at the CA Dept of Health Lyme Subcommittee meeting- she is a good person, a real person, someone who was in pain for years and who wants to spread the good news. Like a Lyme Jehovah Witness!(*)!
Heck, I can relate, clearly.

I don't believe all of you have been misdiagnosed - but I honestly believe probably half of you have been.


ONE study in CA found that 23% of ONE COMMUNITY was infected with a TBD- and didn't know it. They are not rare diseases. They are common!!!

In that study, 18% was Babesiosis, a TBD which depletes red blood cells but does not always cause anemia (esp in CA with our strain). THAT can cause fibro as well as Lyme.

Did your Rheumie test you for it?
I bet not. Rheumies don't know much
about TBDs.
Take care folks,
And you may be someone who DOES have a curable disease- but doesn't know it-
Sarah O.
p.s. Get tested for
1. Lyme disease
2. Babesiosis- whatever strain is in your state- MO1 is in Missouri, 2 strains are in MASS, 4 in CA
3. Get tested for HGE & HME Ehrlichiosis/


Gavin - October 29

Sarah/Robin: I agree that I am most disaapointed as a sufferer of FM that a person of such potential high standing as a leader of a self help group would not realise that these forums are here for people to gain support, compassion and a sense of community. Not to be challenged yet again by somebody that they dont have such a condition. Her lack of understanding and anyone questioning a FM diagnosis in a support board is an open attack on people who are already in a state of self denial. If misdiagnosis of Lyme disease as FM is a widespread as her posts she belong on the board of the AMA not making frivolous cut and paste posts in a self help group.


coop - November 2

AAHHG!!!! NOW THERE"S TWO OF THEM!!!For pete's sake. Why don't the moderators take these annoying spammers(robin and sarah) down??Better yet, lets all go over to their lyme site and tell them all that they have fibro!



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