A new Lyme Forum coming soon!

[Sheila]

We will be starting a separate Lyme forum shortly (after our webmaster returns from vacation).

 

If you have any specific suggestions or comments on this, please drop me a PM.

 

It's been on our radar for a while now, as we know the topic comes up frequently in TS and PANDAS forums and there have been several requests for it.

 

Thanks so much. Sheila

[lyme_mom]

We will be starting a separate Lyme forum shortly (after our webmaster returns from vacation).

 

If you have any specific suggestions or comments on this, please drop me a PM.

 

It's been on our radar for a while now, as we know the topic comes up frequently in TS and PANDAS forums and there have been several requests for it.

 

Thanks so much. Sheila

Great idea! There is a need for a forum about Lyme disease for parents with children who are being treated for Lyme disease. The treatment of Lyme disease and confections is complicated and very overwhelming, especially in the beginning.

[PacificMama]

Sheila,

 

You are very kind to add another forum section in hopes of helping people deal with neuro dysfunction symptoms. I'm not sure how/why the idea of separating lyme aside came about, but I'll offer my opinion that I would not like to see that happen.

 

The fact is that we are talking about ONE BIG UMBRELLA of infectious disease causing neuro dysfunction symptoms of OCD, tics, behavioral, etc. The forum has been recently changed to reflect this in adding PITAND to the title.

 

While I would not call myself a board regular, I would hope that when a newcomer comes to this board that they are suggested to consider that there are several possible bacterial infections to consider (even if they have a strep trigger). And to consider getting tested for a variety of things by a qualified doctor. I think separating out all of the possible infectious triggers makes it difficult for people to get help.

 

There are other boards that exist to help people with lyme. I think of LATITUDES as the place that they will get help specifically as it relates to the symptoms of neuro dysfunction.

 

Curious how other people see this. Again, thank you Sheila for all you do!

[Megs_Mom]

I like the combo for pandas pitands and consider Lyme to be pitands. I learned about Lyme on this board. I used to be able to hit a new post button at the top of the forum and see most recent activity on all forums. Is there a way to do this now? If so then having two boards might be better, as I imagine a huge number of Lyme parents will come? If not, then I hate to the two broken up.

[LNN]

I too have mixed emotions about seeing Lyme split out. Yes, it can dominate the conversation on the Pandas board, but in Vickie's poll, abut 1/3 of the Pandas kids have Lyme and more are considering being tested. If it weren't for the recent dominance of the topic, there's a much higher chance of kids becoming "non-responders" simply because the wrong bacterial infection was being targeted. It took six months of hearing the drum beat before I started to reconsider Lyme for my situation (which is still TBD). I personally have enjoyed having both conversations on one board. I can always chose to skip particular topics. I think things like ERP, diet, school issues - are all common to the larger umbrella of infection-triggered neuropsych illnesses.

 

If there are two boards, then having a way to stay current with a mouse click would be very helpful. I really appreciate ACNs willingness to support conversations and knowledge sharing in the best way possible, regardless of whether it stays one or becomes two boards. Thanks, Shelia!

[thereishope]

What I think would be beneficial about having a separate Lyme forum is that it might draw more people to latitudes. If a PANDAS/PITAND parent has a lyme specific question, they can post on both boards if they wish or continue to post Lyme questions on the PANDAs PITAND board. Whatever their preference is. I already see familiar names post on the OCD and TS board in addition to PANDAS PITAND. I assume the new forum will include Lyme parents that otherwise would see no real need to visit latitudes. We get a bigger pool of information this way. It will also draw more Lyme parents into the world of PITAND and we may be able to help them too. We are a pool of info that they may have not known was out there.

 

 

Lyme Mom/Pacific Mama, in the lyme community, are most aware of PANDAS and PITAND? Would a Lyme parent search out a PITAND board on their own? Just curious.

 

I don't think we will lose too much information by adding another Lyme forum. At least I hope we don't.

Edited August 15, 2010 by Vickie

[NewBeginnings]

What I think would be beneficial about having a separate Lyme forum is that it might draw more people to latitudes. If a PANDAS/PITAND parent has a lyme specific question, they can post on both boards if they wish or continue to post Lyme questions on the PANDAs PITAND board. Whatever their preference is. I already see familiar names post on the OCD and TS board in addition to PANDAS PITAND. I assume the new forum will include Lyme parents that otherwise would see no real need to visit latitudes. We get a bigger pool of information this way. It will also draw more Lyme parents into the world of PITAND and we may be able to help them too. We are a pool of info that they may have not known was out there.

 

 

Lyme Mom/Pacific Mama, in the lyme community, are most aware of PANDAS and PITAND? Would a Lyme parent search out a PITAND board on their own? Just curious.

 

I don't think we will lose too much information by adding another Lyme forum. At least I hope we don't.

 

 

 

 

 

I know this question wasn't directed for me to answer, but from what I have seen, a lot of Lyme parents do not know about PANDAS/PITAND. I have read several posts on a Lyme site from parents who have children that appear to have PANDAS type symptoms, or have noticed a strep connection, but don't seem to put the two together. Bartonella can mirror a lot of the symptoms as well though.

 

A LOT of adults with Lyme also have chronic sore, red throats.

[Chemar]

 

If there are two boards, then having a way to stay current with a mouse click would be very helpful. I really appreciate ACNs willingness to support conversations and knowledge sharing in the best way possible, regardless of whether it stays one or becomes two boards. Thanks, Shelia!

 

By bookmarking the main board index page, one can then easily click through to the various forums here, and so click back and forth to stay updated

 

http://www.latitudes.org/forums/index.php

[PacificMama]

I guess Sheila or someone would have to clarify what the intent of the new lyme forum is.

Since latitudes is a source of information for neuro dysfunction of a certain type, I'm assuming that she is limiting the topic to that area. If so, then I don't understand why lyme would have to be set aside in a separate forum, as I was under the impression that the PANDAS/PITAND forum was for people who were dealing with neuro dysfunction that was infectious triggered -- whatever the infection.

 

I would not imagine it would be a general lyme forum, as many many good ones already exist.

If people here have lyme questions that are not neuro related, they could PM offline, or go to one of the many lyme boards that exist.

 

There are many people here that have found out they are ultimately dealing with lyme, who NEVER would have guessed it. If lyme was set aside separately, they would likely continue to disregard it.

 

As to the question of whether there are other lyme parents who are familiar with PANDAS/PITAND, I would say absolutely they are because many of them are dealing with this neuro dysfunction every day. However, I doubt that more than a few of them would have heard of the term PITAND or PANDAS. I have to bang my head on the table a bit about the term "PANDAS" symptoms. As these types of neuro problems have long been identified as possibilities with lyme. And so, if they are getting lyme treatment from a qualified doctor, they would just know them as typical lyme symptoms. And yes, some of them are dealing with strep infections on top of lyme -- but again, they would not be separating these things out as separate things. It is not PANDAS and lyme, but just lyme plus other infections.

[thereishope]

See, I assumed it would be a general Lyme forum. Yes, I agree, no need to segregate it if that was not the intent.

 

And, I understand what you mean about someone not being PANDAS and lyme. Well, unless they had PANDAS first then got bit by a tick and developed Lyme.

 

The way one with Lyme will then react to strep is similar to a PANDAS child starting to react to viruses. Most still refer to their child as PANDAS, but technically it would then be catagorized as PITAND since it is no longer exclusive to strep.

[lyme_mom]

What I think would be beneficial about having a separate Lyme forum is that it might draw more people to latitudes. If a PANDAS/PITAND parent has a lyme specific question, they can post on both boards if they wish or continue to post Lyme questions on the PANDAs PITAND board. Whatever their preference is. I already see familiar names post on the OCD and TS board in addition to PANDAS PITAND. I assume the new forum will include Lyme parents that otherwise would see no real need to visit latitudes. We get a bigger pool of information this way. It will also draw more Lyme parents into the world of PITAND and we may be able to help them too. We are a pool of info that they may have not known was out there.

 

 

Lyme Mom/Pacific Mama, in the lyme community, are most aware of PANDAS and PITAND? Would a Lyme parent search out a PITAND board on their own? Just curious.

 

I don't think we will lose too much information by adding another Lyme forum. At least I hope we don't.

 

I do not think that most Lyme patients are aware of Pandas. While I can totally understand why it would make sense to keep the Lyme discussion within the pandas Pitand section, I think this is such a great site and there are many parents of children who are very sick with Lyme but whose symptoms are not neuropsychiatric other than irritability and a little depression who would not join a pandas wbsite because they would think it doesn't apply to them (similar to how some parents of pandas patients are not drawn to the discussion of Lyme) .yet all of these parents are facing the same challenges of trying to find a good doctor, getting the right tests, cajoling their kids into taking their medications and eating well, etc. I only joined this forum because my cousin was a forum member and she asked me to join the lyme discission. I became very nterested in the lyme connection to this illness and very concerned that so many parents did not have accurate information about Lyme and other tick borne illnesses. My kids did not have the kind of symptoms most pandas patients have so I would never have thought to join this forum were it not for family and friends on the site. I am very impressed by the parents on this site and how dedicated they are to getting their kids well. I can emphathize with them after what we have been through with lyme disese.No matter what symptoms these children have the parents are dealing with a horrific and frightening situattion watching their kids suffer.The more I learned about the symptoms of pandas the more convinced I became that a large number of these cases are really a sneaky manifestation of lyme disease. Nevertheless it would be nice to have a place where parents of children with Lyme (in all of its manifestations- neuropsyche and more physical complaints) can go to discuss their children's treatment and share information and encouragement. I was desperate for his type of information when my son was first diagnosed but was unable to locate good information geared toward children. It might bring more parents into tis discussion about these infections that are making our kids very I'll and hopefully there would be a lot of inter board discussions where the parents learn from each other because I believe Lyme is a huge factor in many illnesses children face way beyond pandas.

[Sheila]

I understand the concern on both sides and appreciate the feedback.

 

The new topic is being started in response to requests from people dealing with lyme who felt lost on the very active PANDAS-focused forum. In addition, there were complaints that it was causing some confusion; that people dealing with a clear diagnosed case of lyme were assuming PANDAS treatments were totally what they needed to follow and were contacting PANDAS parents by PM for this info--and the PANDAS parents were uncomfortable with this.

 

The forum main topics tend to have overlap. A lot of people with TS have ADHD and/or OCD arising from related biomedical issues, yet we have separate forums for the conditions. We have an OCD forum separate from PANDAS; Lyme is often misdiagnosed as TS, etc. Fortunately the forum has a good search function and people can always post wherever they like.

 

The fact is, PITAND is barely recogized as an acronym on the internet, and most parents and doctors don't know what it means. (Try a general internet search for PITAND and see how little comes up). So it is not very helpful as an addition to the PANDAS forum topic bar for new people checking in. They of course do recognize the term lyme, but if we specified lyme on the PANDAS forum header, I think all the new lyme posters would dilute the very important PANDAS conversation that takes place now.

 

I would like to start the separate lyme forum sometime next week and give it a chance. I hope to have it include natural treatments and lifestyle approaches that might be helpful for parents, in addition to other lyme issues.

 

I hope the decision will make sense to everyone as time goes on, and I do apologize to anyone who will be inconvenienced by it.

 

Sheila

[philamom]

I understand the concern on both sides and appreciate the feedback.

 

The new topic is being started in response to requests from people dealing with lyme who felt lost on the very active PANDAS-focused forum. In addition, there were complaints that it was causing some confusion; that people dealing with a clear diagnosed case of lyme were assuming PANDAS treatments were totally what they needed to follow and were contacting PANDAS parents by PM for this info--and the PANDAS parents were uncomfortable with this.

 

The forum main topics tend to have overlap. A lot of people with TS have ADHD and/or OCD arising from related biomedical issues, yet we have separate forums for the conditions. We have an OCD forum separate from PANDAS; Lyme is often misdiagnosed as TS, etc. Fortunately the forum has a good search function and people can always post wherever they like.

 

The fact is, PITAND is barely recogized as an acronym on the internet, and most parents and doctors don't know what it means. (Try a general internet search for PITAND and see how little comes up). So it is not very helpful as an addition to the PANDAS forum topic bar for new people checking in. They of course do recognize the term lyme, but if we specified lyme on the PANDAS forum header, I think all the new lyme posters would dilute the very important PANDAS conversation that takes place now.

 

I would like to start the separate lyme forum sometime next week and give it a chance. I hope to have it include natural treatments and lifestyle approaches that might be helpful for parents, in addition to other lyme issues.

 

I hope the decision will make sense to everyone as time goes on, and I do apologize to anyone who will be inconvenienced by it.

 

Sheila

 

I look forward to the lyme forum. Thanks Sheila!

[KeithandElizabeth]

Hi Sheila:

 

I also have mixed feelings about a separate forum, but feel that it is worth a try.

 

Both of my children have lyme disease and I would never have ventured into the lyme forum because they only have "PANDAS" symptoms versus the typical physical symptoms that you sometimes see with lyme. So, I guess my point is that if I did not see lyme mom and Pacific mom's posts on the PANDAS forum, I do not think I would have EVER thought of lyme. Even as we did the lyme tests, I thought they would be negative. So, I hope that a separate forum does not detract some of these PANDAS children who may have lyme as one of their microbes creating their symptoms from doing the IGENEX lyme tests.

 

I am also wondering if this forum would be for all who have lyme or just for children who have lyme. There are so many lyme forums out there right now for adults who have chronic lyme and it is often difficult to find appropriate treatment plans/options for children who are dealing with lyme.

 

Just some thoughts......

 

Elizabeth

Edited August 25, 2010 by KeithandElizabeth

[justinekno]

Just to add my two cents, I agree with this statement. My son has recently been diagnosed with Lyme & PANDAS and the PANDAS Forum has really been the one place I have been able to find conversations about children with Lyme. Other Lyme boards seem to be more about adults with Lyme.

 

I also want to add that I am somewhat confused about splitting up the forum. While I understand that the recent talk of Lyme is probably a bit much for parents whose kids do not have Lyme, I thought my son's diagnosis of Lyme and PANDAS would put us under the PITANDS heading. Am I wrong in thinking this is where we belong?

 

 

I am also wondering if this forum would be for all who have lyme or just for children who have lyme. There are so many lyme forums out there right now for adults who have chronic lyme and it is often difficult to find appropriate treatment plans/options for children who are dealing with lyme.

 

Just some thoughts......

 

Elizabeth