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Posted 6/19/2014 3:38 PM (GMT 0)
bump
Posted 6/19/2014 4:35 PM (GMT 0)
Fair enough Trav. I was diagnosed with Fibro.. then MS... then they said it was not MS.. I found this board becasue I was looking at the MS and Fibro boards and someone was talking about Lyme. I suppose I would have found it on my own at some point though... I still question Lyme honestly since I am not getting any better on ABX.. I guess only time will telll.
Posted 6/19/2014 7:28 PM (GMT 0)
It's actually interesting.  Even my ND still respects peoples lupus diagnosis, but what he is finding is that people coming in with a lupus diagnosis looking for alternative therapies end up with a Lyme diagnosis or some other kind of infection anyways.  And so he is able to treat successfully with antibiotics.  If they want to get better they should at least rule it out. 

Also the treatments of plaquenil seem to cross over for both Lyme and Lupus. 

I think people with lupus should be open minded to ruling out Lyme with an igenex testing.  Like Lyme, lupus can also be passed onto the children as well. 

I'm not saying all of lupus is Lyme, but who knows it could be possible that some of it is. 

MS for example might be Lyme, or it could be Chlaymidia infection.  Either way that one is related to an infection.


Lots of times these chronic diseases can be treated with antibiotics.   But Doctors are reluctant to prescribe antibiotics because they fear abx resistance.  Then they give these kind of lazy diagnosis like you can't be treated, but maybe we can manage your symptoms.  Then people listen to these doctors and they are on the chronic disease train.

I think even Micheal J Fox got better with antibiotics for his Parkinsons.  He treated with antibiotics and now he's okay!?  After all those years that passed going the conventional route and being prescribed parkinsons medications.

I think more research should be put into developing more antibiotics and antibiotic therapies. 

Posted 6/19/2014 8:45 PM (GMT 0)
It isn't that many of us don't think that lyme could potentially be associated with multiple diseases - we are simply asking on this thread to stay in this forum. :)

A lot of us mods have gotten chewed out (literally) for our members going to other forums telling people they have lyme and not xyz. Sometimes, I think a member has done it in a very respectful manner - other times and more often completely inappropriate.

That is the only reason this thread is being bumped! So thank you for reading. :)
Posted 6/19/2014 8:55 PM (GMT 0)
Agreed! The only reason for this thread is to say "Please, please don't post in other forums to explain that what someone else may be experiencing is not Lupus, MS, etc. but Lyme disease" - that is disrespectful of others diagnosis. Imagine if the MS people were coming to our forum telling us that what we are experiencing isn't Lyme, but MS - we wouldn't be too happy about that!

If members of other forums wish to dig deeper into their medical issues, the other Mods frequently suggest that their members check into Lyme disease if the symptoms seem to fit and their current treatments aren't doing what they should be to help them.
Posted 6/19/2014 10:04 PM (GMT 0)
Huh.
This is a but crazy !
It's all blended together these things.
Why be divided.
I don't agree and think its how we communicate
And not what we say or suggesest or try to do to help others see the whole picture

If I was on FMS and CFS sites and someone came to tell me to
Look into Lyme I would be so appreciative.

CFS and FMS and all auto immunity issues are being researched and
Finding infectious causes. Maybe not always Lyme.
Maybe viral things. But it's all together one large picture
Like co infections.


We should welcome eachother.
But ask to not to go to other forums
Or eachothers.

I hope they come here and point to issues or
Causes or help for things like Chrinic Fatigue.

It would be great. !

Sorry.
Just my opinion.
Posted 6/19/2014 10:30 PM (GMT 0)
While in my personal life, I'll talk to anyone that I can about Lyme & company, it's just not our place to force our opinions on others- especially not about health care choices. Believe me, if someone from (let's say) MS forum came to this forum and tried to convince those of us without a positive test result that we have MS (or Fibro or many other conditions) instead of Lyme disease - we would be highly offended (just like when the doctors did this to many of us)- and if it kept happening over and over, I know that all the Mods would be getting emails complaining about it, or the people from the other forums would just essentially be attacked in each thread.

We have to respect each others choices here on this forum, and asking that the choices of others on other forums be respected as well is no different. It's no secret that there is a Lyme forum here on Healing Well - we all make sure of that! LOL!

Also, I have seen close to 2 dozen members from other forums get referred to this forum by other Mods over the years - so they are watching and helping the people in those other forums find what's going on with their health too.

But it boils down to one thing: We must be respectful to others health care choices on this forum and on the other forums on this site.
Posted 6/20/2014 1:26 AM (GMT 0)
I never seen a such a post or request
I've never done this but I can see why people might
" force "
??
It would be good if you could show an
Example of inappropriate posts

Otherwise freedom to post ideas and Opionins override this request

I can not agree whatsoever that on the Healingwell forums we have to stay in our Compartments and only talk about those Conditions in those areas.

And if people are being inappropriate there Are rules in place to be banned.

I was on another forum.
These politic issues ended up making it go from
A flourishing active place to a snail pace and limited
Members and all the experienced good people just
Left and got sick of being monitored or told what They should talk about or not even within the health Topics.

It's has to be open unless it falls under
Harassment or other forum guidelines.

Otherwise there is no right of a Mod to request
Or try to impose rules on what and where
People talk / type share.

Post Edited (LoveTheLight) : 6/19/2014 7:29:21 PM (GMT-6)

Posted 6/20/2014 1:44 AM (GMT 0)
nono

Post Edited By Moderator (opugirl) : 6/20/2014 5:45:24 AM (GMT-6)

Posted 6/20/2014 1:55 AM (GMT 0)
Lovethelight - OPINIONS DO NOT OVERRIDE this request. If lyme posters are inappropriately and disrespectfully posting in other forums - they will be warned and then subsequently banned. If you can't follow the respectful guidelines and the few rules that we do try to adhere to, you are welcome to find another forum.
Posted 6/20/2014 2:22 AM (GMT 0)
I went to the Lupus forum and posted to find out if my symptoms fit under the Lupus umbrella.
Someone replied to my post and mentioned she, too was wondering if it was Lyme or Lupus.

So did I break rules....because there were a couple of posts mentioning Lyme disease to each other...even though I posted to find out about Lupus symptoms?

I wasn't trying to lure anyone to the Lyme site..but inadvertently the Lyme disease was mentioned.
Posted 6/20/2014 2:35 AM (GMT 0)
I guess people can't help people who are looking for help here on healingwell. I guess it's more important to follow the rules.
=]chloe
Posted 6/20/2014 2:36 AM (GMT 0)
okay - I just reread the posts on page 1...so it looks like I haven't violated any rules...as I did not suggest to anyone that they may have Lyme disease.

whew! blush
Posted 6/20/2014 2:51 AM (GMT 0)
Edited

Post Edited By Moderator (opugirl) : 6/20/2014 5:45:52 AM (GMT-6)

Posted 6/20/2014 2:52 AM (GMT 0)
There is no rule !!!!
Posted 6/20/2014 3:05 AM (GMT 0)
I wasn't stressed out.... the "whew" was just jokingly. Just being light-hearted about it all...that's all.

I just wanted to make sure I was following the rules....really I'm not stressed out at all....
Posted 6/20/2014 3:23 AM (GMT 0)
Oh good
!

But let's see the rules we are being asked to follow.

Waiting to see the Healing Well forum rules
That represent this moderation request.

Post Edited By Moderator (opugirl) : 6/20/2014 5:46:09 AM (GMT-6)

Posted 6/20/2014 11:53 AM (GMT 0)
LovetheLight,

This was a specific request coming from a group of moderators...an entire GROUP of admin. Its been known and well on this forum for awhile. Just because you are new to the forum doesn't mean it doesn't apply.

I have edited your post lambasting moderators and I do have the ability to do so. If you would like to remain on this forum, please adjust your tone so that it is respectful one otherwise you are welcome to go elsewhere.

@Girlie, no you did not break the rules, if someone asks..."What else could it be" that is entirely different then going to an MS page and saying " All MS is really Lyme disease." I'm not condoning what research is out there but other forums have lost a lot of members because as it has been previously brought up in this thread...how would us lyme patients like it if we were told our disease didn't exist.

I'm not arguing whether this is the best approach or not but bottom line - it is what goes on this forum.
Posted 6/20/2014 1:34 PM (GMT 0)
Lovethelight - you should email Admin and discuss this with him. The Mods do NOT make up the rules and we have to abide by the same rules as you do plus some since we have extra responsibilities. Arguing with us won't change a thing.

You can reach Admin by clicking on the "Admin" button at the top of every page - right next to the Log off/on | my profile.
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