does anybody else wanna tell everyone else they also have lyme

I like to go the fibro page or lupus page and warn them.my cousin died at 28 when rhuemy put her on roids .My folks have it ,sister with bart streaks ,brother with chest pain 30yo,uncle with alheimers, friend with juvinile arthritis ,friend with cpn ,friend with low iron , aunt with arthritis ,friend with shisto , i saw spirochetes in my dads blood and still he want further testing ...the local hospital invited me to a feedback mtg ..i wanna go show them my port and tests and how 3 hospitals and 30 doc smissed this bs infections

bluelyme I would not suggest going to other pages on this website and TRY to tell them about lyme. It doesn't work out very well, as Traveler can tell you.

Oh - this doesn't mean that I don't want to tell them, I honestly believe that we are doing them a GREAT disservice by not letting them know that they could have Lyme and that they could heal!!! But, rules are rules and I can be banned for not following them just as fast as any other member!!!

I used to have fibromyalgia and would go to their meetings. Got tired of the pain and discovered self-hypnosis for "melting" the muscle spasms and had deep tissue massages. It took about a year to reteach the muscles to stay relaxed, but it worked for me.

For a while, I tried telling the fibro ladies about what I did, but they were more into going to doctors and researching the latest and greatest pill.

You can lead a horse to water, but you can't make it drink...

bluelyme, Jane...

I agree that the people you're talking about should explore the possibility of lyme. NO, not everyone has lyme disease (although I think most people have the Bb microbe in their bodies and I'm sure that there is disagreement with that) and carrying the microbe doesn't mean it will manifest into disease and even if it does, it doesn't automatically mean a chronic, hard-to-treat condition.

With the endemic state of this crisis, I think we have a responsibility to share information, since the medical and science industries and our government are failing to. I'm going to go out on a limb and suggest that in most situations you really should share your information--but there are respectful and appropriate ways to do it.

It's a fine line to walk in sharing this info because too little information makes you appear like you're trolling, information that is too personal makes it irrelevant to the person's symptoms you're responding to, and too much information is overwhelming and can appear to be fear-mongering. As always, compassion trumps everything. Sometimes, people just need to know someone else cares or understands that they are suffering.

What I normally do with fibro and CFS sufferers (that often does not solicit a positive response initially but the info later sets in with many people) is to VALIDATE their symptoms as what they have been diagnosed with. Because, after all, those labels are literally names given for groups of very real, awful symptoms. What they are missing is the "why", the root cause. Our bodies don't just go haywire one day for no good reason.

As most of us know, fibro and CFS suffers have battled for decades trying to get the world to acknowledge their misery... so a lot of good progress has been made in the medical industry with the acknowledgement of the suffering and some people are achieving relief with some forms of treatment for these symptoms. Great. Now that they have achieved some progress, it's time to dig into the cause to make sure the damage isn't long-term.

Awhile back, a fibro forum member came onto the Lyme forum and challenged a couple statements I made about fibro being a name for symptoms, not a proper diagnosis. She misunderstood nearly everything I said and immediately felt that I was invalidating her misery. It took a couple of posts to reassure her that I had lived it and knew of the research that proved the sx were real, etc... but I was encouraging her/others to look for a cause, esp if they really weren't feeling better after a very long "treatment" for those sx. She never posted again--not sure if she got it but sometimes people also have cognitive difficulty and it's very hard to process info--been there, done that.

The fear that there is ongoing damage that could be long-term or continue to devolve is what kicked me into a higher gear when I suffered the same diagnoses. Some people aren't there yet--as you might have also experienced, pain and suffering can be traumatic and can alter your brain function. Some really, really just need to get back to life. Sometimes I just plant the seed in their heads that when they're ready, they might want to revisit a few things--again, to make sure they are not allowing something to do long-term damage.

I have a very good friend whom I've only known about a year. She's just a wonderful person. She and her husband have been having trouble conceiving, few miscarriages. She emerged a year ago from pretty bad GI issues that were diagnosed as gluten sensitivity and once she changed her diet, she was better. Then she told me about her former boyfriend of 4-5 years who had been suffering for about a decade from what was finally diagnosed as lyme. So, she intimately knows the symptoms, the process of difficult diagnosis, I shared the statistics I knew of likely sexual and in utero transmissibility and still rejects the idea that she could also have lyme since she currently doesn't have the same sx as before (although I can tell she has other sx, she just doesn't know it).

I talk about my lyme life a lot and she is the most compassionate person I know... no one else checks in on me like she does. But I can't force her to see HER life in a different perspective. The tragedy is she's in her mid-40s and the window for conceiving is closing and the reality is that if she did start treatment, she'd likely need to put off childbirth for a period of time that would significantly impact her "window". Life is not fair.

But to make the sharing personal about the person you're talking to, you really need to know your facts, know what the politics are, know what the science says (all around--both the IDSA side and the ILADS side). I thought I knew all this until I really started digging into it and then I realized how little I knew. Boy, has this really lifted a cloud of mystery for me. Lyme used to be scary--now it's understandable. Knowledge truly is power. And when I talk with people and they think I'm off my head when I suggest they explore Lyme, I assure them it's no longer a scary thing--unless they ignore it.

When you start talking about someone else's "condition" you're in a different territory so if you don't know the person well and don't know their sx first-hand, sometimes it's safer to stay in the zone where you're sharing resources, not diagnoses... ;)

Anyway, may the force be with you. Be creative and stealthy in your journey of advocacy. And again, most of all, be compassionate.

-p

So eloquent pirouette, you are a gifted person in the realm of the verbose .thanks trav.

Okay, P, stop that!

These infections sucked life from my life, and I only wish to help those that I can to keep it from happening to them as well. But I thank you for your kind words.

You're quite the amazing person as well though!! You have been through so much with Y/F issues and you have devoted yourself to helping others and compiling information in a very well written format that helps us all understand the larger picture of not only Y/F issues, but of Lyme and company as well. Thank you!!

Ha ha ha!! If they pay, let me know!!

I would have to do photo copies to be able to get enough to reach every doctor that mislead me, gave me wrong diagnoses, and tests! Some are no longer alive, many are no longer in practice as well, so my plan would be foiled - but it's a nice thought!! LOL!

But, maybe we should be sending the bill to those doctors, since it's due to their inability to help us that we had to get our education the hard way????