Oops....guess I goofed.

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nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/22/2010 10:12 PM (GMT -6)   
I posted TOguy's youtube video on another forum (a forum for another disorder that I have which is frequently caused or triggered by Lyme disease). I had a few back and forth posts with another poster, and perhaps the last post but one of mine was a bit TOO off topic because I just got told by a moderator that I can't post anything about Lyme disease on that forum anymore!

I guess I don't understand....isn't it right to let the sufferers on that forum to know that it's possible they could get a little or even a LOT better by getting treated for LD if they have it?

This makes me very sad. cry
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/22/2010 10:15 PM (GMT -6)   
Well, I actually posted it on three different forums (for some of my many disorders), but I've only gotten chewed out by one moderator so far! :)
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/22/2010 10:45 PM (GMT -6)   
Nasa,
i did the same thing with either the hep c group or the fibro? can't remember. It's like you feel it's wrong NOT to tell at least 5 of those other forums about considering getting checked for LYME but people don't want to hear it. It's like either too unknown or the whole controversy issue they don't want to get near. One thing I see though is there are so many people reading all these posts and not posting themselves so believe me they are peeking in here too and I think this year is going to be a big year for exposing this lyme thing.
don't feel bad about it. I still am in shock that all these years I didn't tune into the lyme forum. And for you , just like me you are really seeing how the lyme has driven you into many of these other conditions. not all but some of them.

how is it going with your doxcy?

bucci
hep c , lyme
Dad has lyme


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/22/2010 10:52 PM (GMT -6)   
bucci said...
Nasa,
i did the same thing with either the hep c group or the fibro? can't remember. It's like you feel it's wrong NOT to tell at least 5 of those other forums about considering getting checked for LYME but people don't want to hear it. It's like either too unknown or the whole controversy issue they don't want to get near. One thing I see though is there are so many people reading all these posts and not posting themselves so believe me they are peeking in here too and I think this year is going to be a big year for exposing this lyme thing.
don't feel bad about it. I still am in shock that all these years I didn't tune into the lyme forum. And for you , just like me you are really seeing how the lyme has driven you into many of these other conditions. not all but some of them.

how is it going with your doxcy?

bucci


Hi Bucci,

Yes, and I've noticed that an awful lot of people are still managing to read those three different threads of mine so hopefully I've reached a couple hundred of them by now with the message.....I don't know. It's just sad that someone feels threatened enough by the truth that they have to keep others from hearing it.

I've been taking doxy for three days now and haven't been sick, haven't had a herx....how long did it take you to get sick after you started taking it? Did you get sick immediately?

JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/22/2010 11:25 PM (GMT -6)   
Not everyone gets sick and you may still improve if you don't get sick. I never herxed on clarithromyacin but I got a lot better while I took it.

Some people herx and some don't. Keep a symptom log and write down details about how you feel including your mood, also keep track of your fatigue and activities. You're more likely to notice changes over time especially if you are slowly improving.

I was diagnosed and treated for Lyme at the same time a family friend was diagnosed with MS. We were the same age and had almost identical symptoms. She would not even discuss the possibility that she had Lyme and kept insisting that I had MS too. I got a lot better and she ended up in a wheelchair with severe vision loss. Had our diagnoses been reversed, I would have tried to treat Lyme before I would have accepted a diagnosis of a debilitating, incurable illness. She wouldn't even get tested because her doc told her it wasn't Lyme because she never had a rash.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/22/2010 11:49 PM (GMT -6)   
nasalady,

The reason why others get upset on other forums is because they have already been diagnosed and have probably already been tested for Lyme and have been through alot just like we have. Don't take it personal but it is a touchy subject. The Moderators already know to send any member our way if they suspect someone of having Lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/23/2010 1:17 AM (GMT -6)   
Thanks Dagger and CajunGrl.

That's quite a story about your friend with MS, Dagger! Very sad that she wouldn't even try to rule out Lyme disease.

CajunGrl, I too had already been diagnosed with half a dozen AI diseases plus several other disorders when I asked to be tested for Lyme. And the reason I asked to be tested is because a friend from an online forum kept insisting that I "rule it out". And she was right...I do have LD.

So I started that thread with the video on the other forum partially to warn people with kids to keep an eye out for ticks and possible-tick-bearing animals around their yards, as well as to let people know that they might have Lyme disease instead of or in addition to what they were dx with. The thread turned into a conversation between me and one other member who was brave enough to reply a few times. If I had just posted the video and said no more it might have been OK with everyone....? I don't know

I seriously doubt that a significant fraction of people on many of the other forums have been actually tested for Lyme. I think there are too many doctors out there like Dagger's friend's doctor, who say "Why test for Lyme? Do you remember having a tick bite? Do you remember having a rash?"

All of my doctors to whom I brought up LD testing responded exactly that way, except for my neuro, who just gave me a long look and then wrote the order for the Lyme ELISA.

Oh well....at least I was able to share that video with a fairly large number of people!

Take care,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/23/2010 2:52 AM (GMT -6)   
Hi nasalady,

I understand where you are coming from because when I hear of symptoms that are similiar to mine, I want to let that person know to check for Lyme. We need to remember though that some people are "comfortable" with their diagnosis and most really don't want to have Lyme Disease. I have a friend here that used to be a Moderator on the MS board that said she much rather have MS than Lyme.

The reason I said that some people have probably tested for Lyme is because the symptoms are so very close. We've also already gone through this on this board several times and most people come back and say that they really don't want anyone suggesting that they have something else and that they have already gone the Lyme route. This is a very scary disease and most people don't want it. I do understand how you feel though.....trust me I DO.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/23/2010 12:46 PM (GMT -6)   
nasalady said...
I posted TOguy's youtube video on another forum (a forum for another disorder that I have which is frequently caused or triggered by Lyme disease). I had a few back and forth posts with another poster, and perhaps the last post but one of mine was a bit TOO off topic because I just got told by a moderator that I can't post anything about Lyme disease on that forum anymore!

I guess I don't understand....isn't it right to let the sufferers on that forum to know that it's possible they could get a little or even a LOT better by getting treated for LD if they have it?

This makes me very sad. cry


I had read your posts on the other forums and had thought about warning you of doing so, but I thought you may not understand.

You see the problem is your not the first to have tried to warn others about the possibility of Lyme being the problem, or the trigger that has caused their illness. I have been on this site since 2007 and have seen this play out a few times. Everyone wants to believe in their DX, and with Lyme being such a controversial disease can we really blame them for not believing in Lyme? If they go to their doctor and question their DX and ask about Lyme their doctor more times than not will deny the Lyme possibility.

Chronic Lyme is not accepted in the mainstream medical field, and until that changes don't expect that to change here either. We know better, however we will have to agree to disagree with our fellow members on the other forums.

Post Edited (Cheezhead) : 1/23/2010 12:03:40 PM (GMT-7)


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/23/2010 1:30 PM (GMT -6)   
Once a reliable, accurate, affordable test is designed - we can push a bit harder to have people tested. Until then, we share when we can. I've found that if I give a gentle suggestion then point them to some online information, people are a bit more receptive. Back in the old days, I used to keep info with me to pass out when I met someone that had an illness that could be Lyme and was interested.

Many people with chronic illnesses feel the need to completely trust their doctors so if the doc rules out Lyme, they need to trust that.

I was much "happier" with my Lyme diagnosis than the MS my doc originally suspected. At least with Lyme, there was a possibility of cure. Am I cured? Probably not, but I've been stable and relatively functional for about 15 years. I had a severe illness a few years ago and if that didn't trigger a Lyme relapse, I guess I'm pretty safe. Now, if we can just get rid of the endometriosis and adhesions, life would be fine!

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/24/2010 3:38 PM (GMT -6)   
Thanks Cheezhead and Dagger,

It does seem to be true that lots of people would rather have MS or lupus or fibro or whatever chronic illness than Lyme disease.

Now I know..... :)

JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 1/24/2010 2:57:00 PM (GMT-7)


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 1/24/2010 6:36 PM (GMT -6)   
Umm ... I don't know.  I think the dynamic is a little different and has a lot of factors.  It's not just about Lyme.  For example, chronic "walking pneumonia" (chlamydia pneumonia or Cpn) is a "bad actor" in both FM and MS.  There have been posts on the FM forun about Cpn and the topics was summarily pre-empted in the same way your Lyme post was.  There's a lot to the Cpn thing, and anyone who hasn't been tested for that, mycoplasma and HHV6 probably should be.  Some 60 - 70% of people with MS also have Cpn.  Many have had MS symptons improve after treating the Cpn.  I can give you the references if you want, or simply search on Wheldon (UK microbiologist so he's a researcher PhD and not a physician), MS, and Cpn. 
 
So it's not about the particular disease. 
 
People with chronic conditions have gone thru - hopefully - the grieving process.  Having done that, they are at peace with their condition and don't want to deal with something else.
 
Comfort zones are comfort zones - even if they are bad ones.  I think "battered wife syndrome" is an extreme example where people put up with really bad things rather than deal with change.  Change is that fearful to some people.
 
People with chonic conditions get tired of being bombarded with "home remedies" and off-the-cuff diagnoses and treatments (My aunt cured her fibro with a taco diet etc etc)
 
Perhaps some mods come to view themselves as "experts" in their area.  Like many in the medical community, they don't want to have their paradigm challenged.  And no - I don't want to be a mod myself.
 
Plus there is some history on HW forums.  We've had Lymies make posts on the other forums and they did it in a tactless, heavy-handed manner.  We've worn out our welcome in many places.  Last spring, we had one guy so bad that he not only alienated several other forums, but also the Lyme forum  He was finally banned.
 
And relative to your post on the FM forum - yes - on the Lyme forum there is discussion of FM related topics and certainly chronic pain issues.


Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/25/2010 2:29 PM (GMT -6)   
Thanks for your great comment Rich....so true about comfort zones!

Take care,
JoAnn
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com

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