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Am I being dumb but where did the Lyme forum go?


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The lyme forum had gone pretty quiet and most of the members who posted there were from or still on the Pandas forum. Since the two share many issues and sometimes our kids have both, it might make sense to have the two forums reunited again. Personally, I found I was repeatiing myself when I frequented both forums and found I had to go to both forums to ask the same question. Kinda nice to have it back in one place. But I don't think the decision is set in stone and if there's a clear preference to have them split, I'm sure Sheila will be open to hearing pros and cons.

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Ditto. And, I was also concerned that the new parents were missing a great deal of information that we were discussing on the Lyme forum but not the PANDAS forum, such as MTHFR, mold, and all of LLM's detailed information that I am still trying to digest :-) Now we can all have access to all the current info.

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I'll be the fly in the ointment, I'm disappointed by the decision - but I will wait and see what happens before passing judgment. I think that the topics/knowledge have evolved greatly since the "Lyme Wars" of yore so hopefully that will help. But I will tell you that I stopped posting here as frequently when that happened. As a straight up strep trigger, I found that every question or post I started quickly turned into a full court press as to why I should be looking at/treating lyme, and the support I was looking for was lost. I found myself to often having to defend/explain why we weren't treating/testing Lyme instead of getting help for the questions I had.

 

I always tried to steer clear of the battles, because I encourage healthy debate, Lyme is a trigger for PANS, and it's important to be able to discuss that openly - but after a while, I just stopped coming here as frequently for support, I felt families like mine were getting lost in the sea of co-infections.

 

If we can have happy and healty discussions, great, that remains to be seen. But it starts with respecting others right to treat their children with the best approach for that family. Respect works both ways.

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I felt families like mine were getting lost in the sea of co-infections.

 

I completely understand you airial95. Being lost in that sea myself, it is obvious, to me, that treatment for lyme and its coinfections is very different from treatment for strep induced PANDAS. We all require a knowledge of detox, MTHFR, gut/immune system interactions etc. and how they can effect PANDAS/PANS reactions, but treatments for each are very different - abx combos, IVIG, PEX, steroids.

 

As a mother of a child with lyme induced PANS I spent a lot of time on the PANDAS/PITAND forum and learned plenty about my daughter's reactions - I have probably spent equal time on both forums. But there is much more to lyme/coinfections than the PANS reactions it can cause. If we were dealing with strep only or mycoplasma only, I would perhaps not appreciate having to wade through all the talk of lyme, especially that focusing on lyme/co bacterial/viral/protozoan treatment as opposed to treatment for the autoimmune side of things.

 

I had no trouble consulting both forums, as I think most parents with lyme/PANS children probably did. I really didn't think that double posts were necessary as I looked at both forums each day and was able to put 2 and 2 together (but I do appreciate you truely knowledegable folks, however, wanting to cover all the bases). I do see how some newbie lyme parents might not grasp all the concepts at once, and may miss things about PANS posted only on the PANDAS forum.

 

I think there does need to be a place to talk about the treatment of lyme/coinfections in children seperate from that place addressing autoimmune brain reactions. They are not always one and the same.

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My only issue would be (and this is probably hair splitting but) the PANDAS/PANS forum is, by definition but not by real world IMO, Pediatric whereas the Lyme forum was for all ages if mainly frequented by parents. Just wondering if some prospective members or guests may be put off reading/contributing 'cos of the Pediatric label? dunno....

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very well said rowingmom, after I posted - I thought about how the OCD/Tourettes' board folks would feel if the PANDAS/PANS forum was combined with theirs. They probably would get annoyed having to wade through posts about abx, IVIG and such - so I think the same holds true here.

 

There is no doubt that Lyme can cause a PANS reaction - but the infection iteslf is so much more complicated, and has symptoms/impact unto itself - aside from the PANS reaction, that I'm still not sure going back to one forum does either group justice.

 

But like I said, I've always respected the Lyme side of the equation - even if it doesn't apply to us - as long as we are afforded that same respect.

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I totally respect what you are saying, but I still think that too many parents new to the PANDAS side were not getting the benefit of all the information (in addition to lyme) that was being discussed on the Lyme side. PANS, by definition is infection, environmental and/or metabolic disorders, and the NIMH mentions lyme as a possible trigger. So I really think that they should be combined.

 

That being said, I think that all the arguing about having to check for lyme and co-infections has died down. I also frequented both forums, and I was constantly seeing posts on the PANDAS forum about checking for lyme and co-infections and viruses, and "other things' mentioned when parents couldn't figure out what else might be going on. And, there weren't battles ensuing as a result. So, it was already being discussed in PANDAS (but not forced), and I don't think it's going to escalate again like it did 2 years ago when it was first brought up.

 

Personally, I'm glad that it was combined, because I think it will help the new parents to see the big picture. And then with additional information, we can all decide what best fits for each of our childrens' and our own needs.

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Tpotter - even after the forums were seperated, there was still plenty of Lyme discussion here, along the lines of making sure folks were testing if they couldn't figure it out. So I don't feel that was ever lost. And I would like to hope that the tension has died down - but I just had a thread on the FB forum shut down because it went off-topic on Lyme and turned ugly - folks saying that "all PANS is Lyme, but "try telling PANS folks that" but "you can't because they go off".

 

This is exactly the type of dialogue (from both sides) that caused problems in thr first place. Unfortunately it is still out there. Rather than engage them - I just reported it - maybe the same approach here will keep things civil.

 

Ultimately it holds true - respect all the way around is what's needed.

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JPdad - I have to disagree and PANS and lyme being two different things. Pandas was renamed PANS due to a number of parents reporting back to Swedo et all that Lyme and mycoplasma and other things were triggers. The Lyme spirochette and the strep bacteria both share very similar M proteins on their outer surface which show up in research as potential agents in molecular mimicry, as the basal ganglia, heart and other human organs have similar-looking M proteins. So biologically, there's a lot of similarity between the two bacteria and how they may cause neuropsych symptoms. Yes, they are two different bacteria, but cousins in many ways. So Lyme is part of the PANS umbrella.

 

That said, as Rowingmom points out, the treatment paths can be different and I can see where those conversations would be frustrating for a non-lyme parent. But not much different than my needing to skip threads about IVIG - I don't share the majority view on that particular treatment and so I avoid those threads as I usually have little to contribute to the discussion.

 

I like the idea of having one place to share conversations about methylation, diet, detox et al. But if having one combined forum causes people to stay away, that would be unacceptable. But it is interesting that for the past few weeks, conversations on both forums had died down. Since the upgrade and combined forum, the conversation seems re-invigorated. Maybe it's a short-term effect. I didn't see the FB thread but I too cringe when I hear sweeping comments about Lyme - and I'm a lymie. It makes me shy away from posting anything on FB - the whole tone is snarky and catty and I hate having conversations in sound bites. Which is why keeping this forum a "safe haven" is so important. The more forums I visit, the more I appreciate how unique this forum is in terms of civility and educated parents. Regardless of whether this stays one forum or goes back to two, I certainly appreciate having this place to call home. If it weren't for all the zany, geeky, passionate ideas that have been thrown at me over the years, my kids would not be (almost) well now.

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As a mother of one child who is strictly a strep responder and two others who are lymies I can see both sides of this issue. Regardless of which way this goes, I think it is important that we stay respectful of everyone's views. I love this forum. It saved my oldest son's life many years ago and I shudder to think of where we would be without the knowledge, guidance, and support I have recieved here. You guys are the best!

Dedee

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