Found these comment interesting regarding Lyme et al

[LNN]

I find myself in a place where I could use some ideas, where I want to share progress, but don't dare post about it because of personal attacks and threads being derailed like this. It feels so counter-productive and frankly, it's poison. Please stop.

Edited August 17, 2011 by LLM

[philamom]

Well...putting in my 2 cents. I am so glad of ALL the information posted here - all sides. I have never felt ambushed to follow a certain path for healing. You take what may or may not work and investigate to see if it will be helpful. Wendy -- I am so grateful for all the time and information you have provided, but more importantly, for just being there when I needed someone to reach out to! And, I'm not following the same path that she is for her children...but I really, really welcome her posts. Thank you Wendy, Laura, and so many others who share their different experences and opinions!!! (without being hurtful!)

Edited August 17, 2011 by philamom

[philamom]

Forget it, if I can't even say anything without being accused of attacking. Just forget it. All I said is that you have to look at EVERYTHING. and the long term risks of abx use seem to be overlooked here.

pandas16- that is not all that you said!. You literally posted a personal attack against someone (specific person) and then deleted your post! And now you feel the one being attacked...I'm sorry - I don't get it.

Edited August 21, 2011 by philamom

[LNN]

Originally when this whole debate began, I did feel EXTREMELY pushed towards Lyme in general. Even got messages telling me to see an LLMD. etc If I did that it would have really wrecked havoc. For some people it's great, for others it's REALLY not. I think all the success stories are great but you can't forget the ones that Lyme treatment wouldn't be right for. I think in general, you can't tell someone or recomend for someone to see a doctor. Especially someone who is young who doesn't know the right direction. You can a lot more harm than good.

I am VERY glad your daughter got her childhood back.

 

I see no harm in suggesting someone see a doctor, especially if that person has come to a forum, has asked for ideas and is presumably old enough to vett information through their own research and with the follow up input of trained medical professionals. This guidance would extend to the risks and benefits of abx as well as other supplements and therapies (which are not risk free either).

 

I would think that for "the ones that lyme treatment wouldn't be right", those people would find a better use for their time than participating on this or any other lyme forum.

[SSS]

I deleted my previous post, too much personal information. I stand by what I said, though, about my gratitude for the people from ACN forums helping out me and my little girl. I reached out, and got wonderful, intelligent information and caring, and sharing.

 

If Lyme isn't right for someone, they don't have it nor have a family member who has it, and distain the treatment, maybe this isn't the right board to be on? No-one here is a Dr., nor are they pretending to be.

Edited August 17, 2011 by S & S

[sf_mom]

I guess I'm glad I missed the post.

 

We are heading out for our first family vacation in over two years 'since sudden-onset' tomorrow morning. Its about time.... our family is finally feeling confident enough to start enjoying life again. My focus needs to be on my kids excitement, packing and not this particular discussion on the forum.

 

Pandas16; Wishing you all the best with your treatment choices and resolution of PANDAS symptoms.

 

-Wendy

[momcap]

I just wanted to share my personal experience, for what it's worth.

 

After several years of doctor's appointments and being dead-ended in an alphabet soup of psych diagnoses for my DS7, I was relieved to find out about PANDAS. I was eagerly asking questions on the PANDAS board and valued ALL of the information I got there. I learned a lot from the "debates", even though I felt badly for the people who were so upset by them. I asked for ASOs and Cunningham's, which I never would have known to ask for without this board. It looked pretty obvious - ASOs in the 500s (with a baseline of 27 from years ago), and CamK at 176. We pursued PANDAS treatment, but instead of getting better, whenever we tried high dose abx, DS turned into a raging lunatic. SF Mom and a few others suggested that I rule out other infections such as lyme and mycoplasma, just to be sure we were on the right treatment path. I am VERY, VERY grateful for that advice!!! It turns out that my whole family is positive for lyme. I am even CDC positive. All of the puzzle pieces are coming together for us. Our PANDAS doc wanted to treat with a long-term high-dose antibiotic alone. Now that we have more information about further infections our DS is harbouring (lyme, bartonella), we have made a more informed decision. Now DS is on a combo of high-dose antibiotics with some major herbal support and he is already improving dramatically, although we are under no illusions that the road ahead will be easy. We look at the high-dose antibiotics as a necessary evil, and are pained by the risk we know we are taking. But the risk is worth it in our case because before this he was on psych drugs which weren't helping at all. He wasn't able to attend school. He was making our family life a nightmare. Everyone was miserable. He was frequently suicidal from the age of 5 (!!!), wildly aggressive, and should have been hospitalized more than once. What other choice did we have? I shudder to think of the path we would be on now, without the information shared by compassionate individuals on this board. Wendy, you are my hero! My son is getting well because you were brave enough to keep sharing despite criticism and personal attack.

 

Everyone's path is different. Not everyone who comes to the PANDAS board will have a child with lyme. But given the percentage that have, it just makes sense to suggest ruling this infection out. Best advice I ever got!

[philamom]

I guess I'm glad I missed the post.

 

We are heading out for our first family vacation in over two years 'since sudden-onset' tomorrow morning. Its about time.... our family is finally feeling confident enough to start enjoying life again. My focus needs to be on my kids excitement, packing and not this particular discussion on the forum.

 

Pandas16; Wishing you all the best with your treatment choices and resolution of PANDAS symptoms.

 

-Wendy

Now that's music to my ears! Have a GREAT vacation Wendy!!!