Thanks for all the Lyme info

[LNN]

I just wanted to post a "thanks" to the recent lyme authorities here. Some of us belong to an OCD parents forum and a few weeks ago, the Pandas parents were on roll trying to educate/inform. Admittedly, we got a bit zealous (can you imagine that?). But we were spurred on by new parents who kept asking questions. Then came a backlash from the forum's moderators, who felt we'd hijacked the forum and the discussions were getting "out of balance." It was "suggested" that we email parents instead of using the forum to disseminate information.

 

The experience left a bad taste. I still "fish' on that forum, antenna up for possible cases that could be Pandas. But I'm still irked.

 

So I wanted to make sure the lyme posters had a different experience on this forum. We just want our kids to get well. So any and all information that helps get us there is great. I think it's fascinating how similar the two diseases are, and how Pandas seems to be on the same controversial, glacially slow path toward progress. I think we need to hijack the Lyme experts and get them on the Pandas trail too.

 

I've had a few discussions with people about whether having PANDAS on the DSM V would be a good thing. Personally, I want it far away from the psychiatrists. It's an autoimmune disease. Not a psychiatric illness. So I'd rather start grouping it with Lyme, Lupus, Celiacs, Chronic fatigue...

 

So thanks for educating us. Pandas parents can be a royal pain in the patutti, but we at least enjoy learning...

[lyme_mom]

I just wanted to post a "thanks" to the recent lyme authorities here. Some of us belong to an OCD parents forum and a few weeks ago, the Pandas parents were on roll trying to educate/inform. Admittedly, we got a bit zealous (can you imagine that?). But we were spurred on by new parents who kept asking questions. Then came a backlash from the forum's moderators, who felt we'd hijacked the forum and the discussions were getting "out of balance." It was "suggested" that we email parents instead of using the forum to disseminate information.

 

The experience left a bad taste. I still "fish' on that forum, antenna up for possible cases that could be Pandas. But I'm still irked.

 

So I wanted to make sure the lyme posters had a different experience on this forum. We just want our kids to get well. So any and all information that helps get us there is great. I think it's fascinating how similar the two diseases are, and how Pandas seems to be on the same controversial, glacially slow path toward progress. I think we need to hijack the Lyme experts and get them on the Pandas trail too.

 

I've had a few discussions with people about whether having PANDAS on the DSM V would be a good thing. Personally, I want it far away from the psychiatrists. It's an autoimmune disease. Not a psychiatric illness. So I'd rather start grouping it with Lyme, Lupus, Celiacs, Chronic fatigue...

 

So thanks for educating us. Pandas parents can be a royal pain in the patutti, but we at least enjoy learning...

Thanks. Those of us who have been through Lyme are eager to help others get the right diagnosis and treatment. If anyone wants the name of my doctor who is a lyme expert and holistic MD who also understands PANDAS, let me know. He is in the Washington, DC area and I highly recommend him. Just PM me.

[Megs_Mom]

Triple dittos! As one of the parents who was chastized for answering questions on the other forum, I admit to loving this forum, despite the occassional argument, for the openness of everyone here in looking for all the answers.

[ajcire]

I know I was very appreciative that lymemom took the time to contact me with some information. It completely has me in a panic but certainly not because of her... just because the thought of starting over in figuring this out is making me feel ill.... I don't know if it is what is going on with my child or not but it is definitely seeming to be a possibility with what is going on with myself.

[PacificMama]

Thanks for the thoughtful post. I had to chuckle about your description of highjacking the OCD board. Once we find enlightenment, we want everyone to find enlightnement!

 

Yes, all we want is to get our kids well. Labels and categories are useful, but then they can pull us apart too, rather than together. Like SF Mom said, I really think of this as PAND, and what pulls the trigger (strep, lyme, myco, other!) is the individualizing factor. My hope was that anyone coming here, or already here, would carefully consider all possibilities as it relates to underlying infection.

 

Regards,

Mary

[sf_mom]

The information has been extremely helpful!

 

Thanks for the thoughtful post. I had to chuckle about your description of highjacking the OCD board. Once we find enlightenment, we want everyone to find enlightnement!

 

Yes, all we want is to get our kids well. Labels and categories are useful, but then they can pull us apart too, rather than together. Like SF Mom said, I really think of this as PAND, and what pulls the trigger (strep, lyme, myco, other!) is the individualizing factor. My hope was that anyone coming here, or already here, would carefully consider all possibilities as it relates to underlying infection.

 

Regards,

Mary

[LNN]

Yes, all we want is to get our kids well. Labels and categories are useful, but then they can pull us apart too, rather than together. Like SF Mom said, I really think of this as PAND, and what pulls the trigger (strep, lyme, myco, other!) is the individualizing factor. My hope was that anyone coming here, or already here, would carefully consider all possibilities as it relates to underlying infection.

 

The recent experience on the OCD board was an unpleasant one. It was surprising in a way because in general, the OCD community has been more accepting of PAND than the TS community (among doctors AND patients). It makes me feel like PANDAS is "coming into its own" as the community starts to find kindred spirits among the other autoimmune communities (tho I sure wish you guys had a happier ending in sight - I must say your continuing uphill battles doesn't make a good recruiting poster).

 

I'm curious, as I don't know anything about the lyme community - do you deal with the same kinds of fractures that exist in the autism communities or are you generally more united? I worry as PANDAS matures that we will split over treatment debates, disagreements about where any (yet to be found) funding should go, etc. Right now, we're all survivors of a ship wreak sharing a few life preservers. Put us all in a boat with a little less desperation and I worry about how well we will or won't get along... Goes back to my "married to our ideas" post earlier this week. I too hope we all remember to be open to possibilities and that there may be no "one" answer.

[justinekno]

I have to say thank you too to everyone because as we explore the "possibilities" of what the true problem is for my son, it is helpful to have this board where ideas are thrown out and I can go to our dr and say, "what about this?". We are fortunate because our dr has been great about taking my little bit of knowledge and helping me make sense of it and deciding if it makes sense to take the path. So far he has agreed to all of my crazy suggestions! Without this board, I may have gotten to some of the suggestions at some point but certainly not as quickly and as we all know, time is of the essence for our kids. I look at this board's postings like a show on TV, if one offends me or doesn't interest me, I bypass it and move to the next one that may be more appropriate for us.

 

Yes, all we want is to get our kids well. Labels and categories are useful, but then they can pull us apart too, rather than together. Like SF Mom said, I really think of this as PAND, and what pulls the trigger (strep, lyme, myco, other!) is the individualizing factor. My hope was that anyone coming here, or already here, would carefully consider all possibilities as it relates to underlying infection.

 

Regards,

Mary

[PacificMama]

I'm curious, as I don't know anything about the lyme community - do you deal with the same kinds of fractures that exist in the autism communities or are you generally more united? I worry as PANDAS matures that we will split over treatment debates, disagreements about where any (yet to be found) funding should go, etc. Right now, we're all survivors of a ship wreak sharing a few life preservers. Put us all in a boat with a little less desperation and I worry about how well we will or won't get along... Goes back to my "married to our ideas" post earlier this week. I too hope we all remember to be open to possibilities and that there may be no "one" answer.

 

I would say that overall the lyme patients are united. Mostly, it's a united front against the idiot doctors and guidelines that say "lyme is treatable with 2 weeks abx, and after that if you still have problems it's all in your head and I can't help you". Nearly every state has a patient advocate organization. There are well organized national groups the do advocacy work -- education and introducing legislation and things like that. Senators and representatives from some of the most endemic states are very aware and involved in helping. There are organized marches and petitions and such. There are magazines and web sites galore. Many people like to compare the movement to the early AIDS activists -- when these sick people were marginalized and had trouble getting treatment and getting their insurance companies to pay. The AIDS activists took a very agressive approach and changed everything.

 

But yes, there are some disagreements about treatment. This probably comes more into play when you are talking about alternatives to abx -- and some of it gets pretty crazy. The lyme boards are extraordinarily active. I guess with any medical condition, there are going to be these battles for diagnosis and treatment. I mean, just think about cancer and all the possible ways of dealing with testing and treatment. So, I think while it is maddening, it just comes with the territory too!

[Megs_Mom]

Yes, all we want is to get our kids well. Labels and categories are useful, but then they can pull us apart too, rather than together. Like SF Mom said, I really think of this as PAND, and what pulls the trigger (strep, lyme, myco, other!) is the individualizing factor. My hope was that anyone coming here, or already here, would carefully consider all possibilities as it relates to underlying infection.

 

The recent experience on the OCD board was an unpleasant one. It was surprising in a way because in general, the OCD community has been more accepting of PAND than the TS community (among doctors AND patients). It makes me feel like PANDAS is "coming into its own" as the community starts to find kindred spirits among the other autoimmune communities (tho I sure wish you guys had a happier ending in sight - I must say your continuing uphill battles doesn't make a good recruiting poster).

 

I'm curious, as I don't know anything about the lyme community - do you deal with the same kinds of fractures that exist in the autism communities or are you generally more united? I worry as PANDAS matures that we will split over treatment debates, disagreements about where any (yet to be found) funding should go, etc. Right now, we're all survivors of a ship wreak sharing a few life preservers. Put us all in a boat with a little less desperation and I worry about how well we will or won't get along... Goes back to my "married to our ideas" post earlier this week. I too hope we all remember to be open to possibilities and that there may be no "one" answer.

 

In fairness (and I know you don't mean otherwise, but for those that were not there), it was definitely more of a moderator issue than a OCD community issue. I think in general everyone is still quite united within Infection-triggers Neuropsychiatric Issues (although we are rather passionate at times!!) and within the OCD community - whatever helps our kids is on the radar. That the moderators kind of stressed out was odd, and I think was indicative of some concerns about information that they are not yet well versed on, and partially due to personal stresses and over-reaction. I just got caught in the cross hairs for a few days. Generally, I just go eat chocolate when I am yelled at, which thus far in my life, has been a great coping strategy. As I tend to walk the edge a lot . A great quote from this week, was a doctors visit with my husband (RA or something, sudden onset), where I just wanted abx for him. I was pretty mad when we left, but I said to dh "well, at least we got abx". He said "I think he would have given me crack if it would have gotten you out of his office". Made me laugh in the midst of a rage.

[lyme_mom]

Yes, all we want is to get our kids well. Labels and categories are useful, but then they can pull us apart too, rather than together. Like SF Mom said, I really think of this as PAND, and what pulls the trigger (strep, lyme, myco, other!) is the individualizing factor. My hope was that anyone coming here, or already here, would carefully consider all possibilities as it relates to underlying infection.

 

The recent experience on the OCD board was an unpleasant one. It was surprising in a way because in general, the OCD community has been more accepting of PAND than the TS community (among doctors AND patients). It makes me feel like PANDAS is "coming into its own" as the community starts to find kindred spirits among the other autoimmune communities (tho I sure wish you guys had a happier ending in sight - I must say your continuing uphill battles doesn't make a good recruiting poster).

 

I'm curious, as I don't know anything about the lyme community - do you deal with the same kinds of fractures that exist in the autism communities or are you generally more united? I worry as PANDAS matures that we will split over treatment debates, disagreements about where any (yet to be found) funding should go, etc. Right now, we're all survivors of a ship wreak sharing a few life preservers. Put us all in a boat with a little less desperation and I worry about how well we will or won't get along... Goes back to my "married to our ideas" post earlier this week. I too hope we all remember to be open to possibilities and that there may be no "one" answer.

 

In fairness (and I know you don't mean otherwise, but for those that were not there), it was definitely more of a moderator issue than a OCD community issue. I think in general everyone is still quite united within Infection-triggers Neuropsychiatric Issues (although we are rather passionate at times!!) and within the OCD community - whatever helps our kids is on the radar. That the moderators kind of stressed out was odd, and I think was indicative of some concerns about information that they are not yet well versed on, and partially due to personal stresses and over-reaction. I just got caught in the cross hairs for a few days. Generally, I just go eat chocolate when I am yelled at, which thus far in my life, has been a great coping strategy. As I tend to walk the edge a lot . A great quote from this week, was a doctors visit with my husband (RA or something, sudden onset), where I just wanted abx for him. I was pretty mad when we left, but I said to dh "well, at least we got abx". He said "I think he would have given me crack if it would have gotten you out of his office". Made me laugh in the midst of a rage.

 

Yeah you should have told him that you will fly into a lyme rage :-) if you don't get the antibiotics!

[LNN]

In fairness (and I know you don't mean otherwise, but for those that were not there), it was definitely more of a moderator issue than a OCD community issue.

 

Yes, definitely the moderators who had the issues. Most everyone else either skipped those posts or wanted to know more. And I did just post "another PANDAS post" on that forum in response to a newbie post. So it hasn't stopped me, just made me bite my tongue temporarily. And I just got one of those" best gifts" - a follow up post from one of the moms we collectively educated, saying her daughter was on abx and they saw some signs of things toning down. Nothing conclusive, maybe it's not PANDAS. But the parent now has information, and that's always a good thing.

[sf_mom]

You made me laugh.... Thank you.

[Kayanne]

I also think that the more information a person has the better equipped they are to deal with their issues...or to help someone else. I, too, want to add my thanks to the people who have posted about lyme.

 

I am curious, though, are the neuropsych side effects from lyme considered a secondary, autoimmune response? Or is it more of a direct effect the bacteria has on the brain? Do the doctors/researchers know this yet?

 

Thanks!

 

~Karen

[lyme_mom]

I also think that the more information a person has the better equipped they are to deal with their issues...or to help someone else. I, too, want to add my thanks to the people who have posted about lyme.

 

I am curious, though, are the neuropsych side effects from lyme considered a secondary, autoimmune response? Or is it more of a direct effect the bacteria has on the brain? Do the doctors/researchers know this yet?

 

Thanks!

 

~Karen

Karen,

 

This is a good question. It is considered a direct effect of the spirochetes on the brain. I have seen many references to Lyme being an auto-immune problem on this board and, while a lyme patient can have an auto-immune problem, having lyme does not mean necessarily that you have an auto-immune problem. These patients get better and many get rid of all their symptoms with the right treatment. The lyme doctors believe that anyone who still has lyme symptoms is not ready to stop treatment (and this includes neuropsychiatric symptoms for sure). There is a lot of conflicting info on the internet about lyme disease. Your "traditional" sources of info are often wrong.

At the heart of the controversy over the diagnosis and treatment of lyme disease is a small group of infectious disease doctors who are in charge of the Infectious Disease Society of America. Connecticut Attorney General Blumenthal sued the ISDA in May of 2008 and charged them with flawed guidelines for the diagnosis and treatment of Lyme Disease and charged that 9 out of 12 have financial conflicts of interest related to Lyme Disease. They created a new panel to review the ISDA guidelines and last week it was reported that this panel was already violating their agreement with Blumenthal in an attempt to bypass a full vote by the new panel regarding the guidelines. They want to keep the old guidelines in place at any cost. Its an outrage that these doctors are standing in the way of patients who need treatment for Lyme. The book Cure Unknown tells the whole history. There are several personalities who have dominated the lyme discussion for the last 40 years to the detriment of patients with lyme everywhere. You can see them in the movie Under Our Skin and judge for yourself. These doctors say that any patient who presents with symptoms of lyme after antibiotic treatment has their immune system to blame, not a persistent lyme infection. Guess what? There is no treatment necessary if this is the case and some of these doctors routinely testify on behalf of insurance companies, which is a huge conflict. As a mother with a very sick child with lyme I knew who I wanted to treat my family.