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Posted 3/5/2013 7:46 AM (GMT -5)
 I just crossed over to the CFS. forum. all the same issuses with no responses. I answered a few, but you know most of my answers are kinda lyme sided.

 it just seems like all the research weve done is needed elsewhere too.

 is it wrong to go out side our box?

 I like to try to make lots of people smile.  :)  I should have been a clown!

Posted 3/5/2013 7:55 AM (GMT -5)
Hi Tom,
I really wouldn't suggest that you try posting in other forums unless you leave Lyme completely out of all of your posts. People have a tendency to get comfortable in their diseases and have no desire for others to tell them it's not that, but something different. Just look how offended Lymies get when they are told that they have MS, ALS, CFS or any other thing. They too believe they know what they have. At that point it really doesn't matter who is right, only that feelings are about to get hurt. I've done this and have watched many others try to share information, but it never turns out well.

On the other hand, if you just want to go in there and goof around, trying to cheer others up, I would say give it a go! :-) And maybe you should consider a change in careers??? LOL!!
Posted 3/5/2013 8:04 AM (GMT -5)
good point(s).
most of my posts are just spirit lifters.( I try any way.) I dont have real answers to anything, just winging it trough life. :)
Posted 3/5/2013 8:24 AM (GMT -5)
Tom,

That's my exact same thought when I see people strugling with CFS or ME or Fibromyalgia, I was put on that wrong track too... Luckely my doc sees CFS / ME / Fibro merely as a symptom of something seriously wrong with people's system...

I don't know about going outside our box.

There's an ME forum in my country, but people on there tend to be very territorial about their ME diagnosis. I sometimes go and have a look, but I never post anything, cause I've seen people really put down by the members because of just posting their ideas about possible other causes of their fatigue.

They finally were diagnosed with something and are really holding on to that diagnosis... strange thing to see that happen.

Occasionally, I send a pm to someone with questions about Lyme/Bart, just to help them.
I was once so mad I actually reacted on people's behaviour: I told them it was not right to diminish other people because they're only trying to get an answer to their suffering (they would really exclude people that didn't have the ME 'stamp'). And that I couldn't accept people going into competition about who's worse off, someone with cancer of someone with ME (me being a cancer 'survivor'). Never had a reaction on my post, think they got the message...

Making people smile is so much fun. You don't actually have to be a clown to be a clown :-)

Posted 3/5/2013 1:29 PM (GMT -5)
Interesting thread. Some how I intuitively realized throughout this process that people do tend to get "attached" to their diagnosis and don't want to hear a word about any other possibility.

I have an acquaintance that has CFS, Fibro and I *believe* she said possibly RA. But definitely CFS/Fibro. At any rate, the woman has been suffering for 17 some odd years. She was a teacher, had to quit. She somehow thinks this has a genetic component so she didn't have biological children, she adopted. Well, her daughter who is in my daughter's grade has been out of school for 34 days this year because she has been experiencing vertigo and crushing migraines, vomiting, the whole deal. Sure enough (we are in Boston) she's seen the best doctors and everything is coming up clean. This woman keeps saying, "I hope she doesn't have CFS or Fibro, like me!" I'm thinking to myself, "Oh dear God. Get the girl tested for Lyme!!' I think she said they did, but we all know how that goes. Meanwhile her house is covered by bushes and trees, etc. I can only IMAGINE the amount of ticks she has in that yard. We are in a highly endemic area for Lyme!

Have I said one word? Nope. It's killing me, because her daughter is suffering. But she's holding on to these diagnoses with a kung fu grip. I've even considered sending her the link to "Under Our Skin' and also some of the transcripts from conversations with Dr. F in Arizona, who pretty much said every RA/Fibro/MS patient he's ever had are carrying that Bartonella-like bacteria he's spending his life researching. But I don't think it would go over well. I feel terrible for her daughter who is suffering needlessly though. But some people need to come to this in their own time.

BBrian. Interesting about G.W. It's too bad he didn't have the opportunity to help us while we had him in power and was willing. We have a friend of the family that grew up in Ct. and as a teenager he and his friends would try to row their boat out to Plum Island only to be stopped by military. He's convinced that Lyme is/was a weaponized agent. Very sad indeed.
Posted 3/5/2013 6:59 PM (GMT -5)
I think its good to tell ppl with simillar symptoms to get checked for lyme
Im so glad i finally figured out the reason for my 24/7 headache.

i wish someone had suggested it sooner in a headache forum!
thank god for the internet and researching symptoms and the movie 'under our skin'
I finally figured it out. i had to demand testing and fight for treatment
Posted 3/5/2013 7:29 PM (GMT -5)
I agree, nspeedracer. I feel it's our responsibility to educate people, since the 'establishment' is negating theirs. I know some people won't listen, but at least you have to try...repeatedly.

I have a friend who has suffered from fibro for years. She's unable to work and is on disability now. We'd lost touch, but once we reunited and discussed our various health issues, I sent her marching for lyme testing. She had all my symptoms!
Posted 3/12/2013 2:08 PM (GMT -5)
I agree with the Nspeed and Tickle. I know acquaintances won't always listen, but I am more concerned about their welfare than my relationship with them. It is hard though I know because at the same time you don't want to cut off communication....and of course, we care how they feel about us. I understand what Traveler is saying about posting on other forums though. I have been aghast at some of the rude responses from people on other forums. They really don't want "Lymies" posting on their forums. It's sad because people are just trying to help. bbrian, my husband spent 2 1/2 years near Plum Island while in the navy. Even though he was diagnosed with ALS, we believe it could very well be Lyme or a co-infection. We are checking into the possibility of Mycoplasma Fermentans, from engineered bacteria they worked on at Plum Island. It seems too much of a coincidence that he spent all that time in the area and now has these problems.
Posted 3/12/2013 2:41 PM (GMT -5)
I have a family member (wife of my cousin) who has huge problems (CFS/Fibro/ME), my aunt told me about it in a desperate attempt to try to find help for her daughter in law.

She knows about my situation, I get along very well with her. So I sent her all of my test results, the dr's diagnosis, the whole lot (which is very personal, but I wanted to show her daughter in law the whole picture, in an attempt to really convince her to go and see my dr). But she was already hijacked by another dr who sees CFS/Fibro/ME only as a disease 'an sich', putting her on heavy pain meds and other band aid measures.

Now she's going down very fast, walking on crutches now. I'm planning to go and see my aunt very soon, I just can't watch it...

I've posted on this thread before, about people on other forums being very territorial about the diagnosis they finally got. I've been passing by that one forum a few days ago, just having a look, and guess what?

More and more people (that were very protective, even agressive about their ME-diagnosis) are posting things about Bartonella. There are still some die-hard members, but some of the other members tested positive on Bart, so there's no way around it anymore...

(just for the record: I'm not claiming that all CFS/ME/Firbo patients have tick borne diseases).

Marie

 

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