nicklemama

Please keep us updated. I'm very interested.

I really hope Alan Dershowitz can get the job done. At this point, they need a top tier legal team. I don't blame them for speaking out. In my mind, that's their right. I feel they are being punished for being vocal about the wrongs in this mess.

I'm about half way through Horowitzs book. My LLMD is ILADS trained. He keeps a very low profile but he attends the meetings. He knows and has communication with many of the biggest names. His wife had Lyme and he learned how to treat Lyme and got her better. He discovered two of his three kids had Lyme. He told me he started seeing Lyme in some of his patients. Then they saw Lyme in their friends and family and soon enough, he had a Lyme only practice. Super nice guy. Came highly recommended, even from my doctor!

Think I'll go throw up now. Thanks for the links. I'm book marking them.

Rachel, the Western Blot shows the Lyme bands, from all the labs who do WB, including Quest. You must be talking about the screening test. It's a total waste of money. Not reliable at all.

Oh, no worries. I'm not beating myself up. I worked my butt off trying to help my son, including an entire year of him gone absolutely crazy and without diagnosis. I do have to share some of the blame though. I read right here time and again to check for Lyme. We are campers and outdoor people. I had a PANDAS dad who is a physician tell me there is no Lyme in Michigan. As for me, thanks for the nice thoughts. I was pretty much asymptomatic for all those years. I was put on plaquenil for RA. It kept my symptoms at bay. It also damaged my retinas. When I went off it, that was the game changer two years ago. I opted for the antibiotic protocol for RA vs taking stronger RA meds. It wasn't enough minocycline to help me with my unknown case of Lyme. If I'd opted for traditional RA meds, I might be suffering those side effects and never know I had Lyme. The last six months have been rather difficult as I hurt in every cell of my body, all the time. I went to the integrative clinic I took my son to, two years ago, in desperation and not wanting to have to take RA meds. I was tested for all sorts of things....adrenal insufficiency, thyroid, food sensitivities, yeast, just about everything imaginable. The doc told me she'd never had a patient at this clinic have tests come back looking so good for someone so sick. Nothing came back out of range. Lyme testing was the next step. Bingo. I will share that this clinic typically only sees really ill patients who've been everywhere else and kids on spectrum, though they are now treating PANDAS kids. My LLMD has been working them and in the last year or so, they've started doing Igenex on patients. They had the CDC call them fairly recently to inquire what was going on because of the numbers of people CDC positive for Lyme they've been getting in a state where Lyme was supposedly rare just two years ago. Now, the CDC acknowledges the West coast of MI is full of Lyme. My son got Lyme in MI. We adopted him so it's not from me. I got Lyme from Oklahoma, where I grew up and had lots of known tick bites by Lone Star ticks. Look up the CDC map and stats. There is no Lyme in Oklahoma or so they say. Anyway, this is a long convoluted way to say thank you and assure everyone that I have some energy back and relief from my pain after my first 30 days of doxycycline. I have a long way to go but I'm hopeful and I'm certainly not as debilitated as some chronic Lyme patients. LLMD said he anticipates two years of treatment due to how long I've had Lyme. Now to find my brain again, lol.

As much as I wanted not to believe it, I got proof undisputed today that my son has/had lyme. He is in the convalescing stage, I guess you call it. I received his Igenex results today at my LLMD appointment. Only one band positive IgM, five bands positive IgG. Seems active infection gone now. All along this ride, he has had lyme. Who would have thought a boy in a state that supposedly has little lyme and has never had a known tick bite would have lyme? I post this to encourage everyone to test for lyme through a reputable testing lab. If you think about it, it makes sense. Sudden onset two days after flumist at age 5. Never had strep prior, that we know of. Never has tested positive for strep through swab, culture or titers. Rarely sick until onset. IVIG twice, many, many months of treatment dose abx and then several years of prophylactic dose augmentin and he flared and exacerbated over and over. He did not get well until his local PANS doc (not an expert) tested him thru Quest and found ehrlichia and anaplasma (lyme neg) and started treating him with augmentin and biaxin in combo. Its been a year on this and he's doing really well. Not 100% but really well. I resisted thinking he could have lyme. I could have saved him a lot of misery and myself a lot of money if I'd just have pursued this years ago. I was nudged into it when I discovered I have lyme. I have been fairly ill and declining for more than a year now. I've been improperly diagnosed with seronegative rheumatoid arthritis for 15 years.

I agree with all the above. My son never ticced before PANS and it was never his primary feature. He did develop very noticeable tics. He's the best he's been in 4 years and has been for the last 6 months. Yet, he still has what I would call little tics that come and go. Eye blinking, mostly. He's got a cold right now and he is having some eye blinks. He's not 100%. At this point, I'm not sure if he ever will be. He does not have Tourette's. I'll be honest and say I'm kind of a Tourette's doubter, at the risk of making some moms really angry. I don't doubt it exists. I doubt it's as described and there is newer evidence it is inflammation based.

Yes, powwow, that's what is so scary. They were there for help in treating the flu. Somehow psychiatrists got involved and when a psychiatrist is involved, watch out. A very prominent PANDAS doctor told me, and I quote him word for word, " I hope I live long enough to see psychiatrists put out of business." The doctor went on to say psychologists had a place but not psychiatrists. I was a little surprised at the time but not anymore. I share the same sentiment.

It is disheartening but you are not going to change the mind of someone who does not want to change. Look elsewhere for help. I've been through a long list. There are doctors out there who still love to learn and understand they do not know everything. The trick is in finding them.

I'm very sad for her parents. I find it rather alarming, as well. Just one more reason to stay out of hospitals with PANS kids. I don't know what's going on there with the judge and all the players but something is very, very wrong. I wasn't under the impression it was for a judge to decide what illness a child had but whether the child's parents could properly care for them.

Western blot testing for Lyme will not pick up mycoplasma. Some say it may pick up other proteins from bacteria with flagella. Mycoplasma has no flagella.

Not to mention that we now have a generation who have no natural immunity to infectious disease, only vaccine immunity, which does not last. I just read a study that mothers who were vaccinated do not pass their vaccine immunity on to their babies while breast feeding, unlike women who had the diseases and developed natural immunity. That puts infants at greater risk since they are completely unprotected at a very vulnerable time. Kids not allowed to have their immune systems develop through "practice" of having communicable diseases have immune systems that do not work like our generation. This is one of the reasons why we see the explosion of chronic illness with children these days. It makes sense to me.

Many of us have been in the same spot. My sons school refusal was related to every separation anxiety. I had age on my side. My son was 5 and I told him I'd stay at school and keep a watch on him but he wouldn't be able to see me because it was against school rules. He's had a few days this year of not wanting to go to school and flat out telling he wasn't going. I responded by telling him he would go, it's the law and if I had to call his dad home from work we would drag him into school. I got away with that because my son is doing pretty well. You need to get documentation from professionals and then talk to the school. Many here have 540 plans. My son misses many days of school each year due to illness and a multitude of doctors appointments. Last year he missed 20 days of school. Because the school knows about his illness, I do not get truancy letters sent to me nor am I questioned in any way. I have tons of support from my sons principal. Almost forgot the most important thing I wanted to say. You will need to get your mind in a place where you no longer care what others think about your parenting skills. Others are dealing with neurotypical, healthy kids. The rules don't apply when a child is ill.

Every body is different. Triggers cause different things in different children. Your genetic makeup plays a big role in this. For instance, my son has been taking ALA for several years without a problem. Stomach viruses do not seem to affect him in a PANDAS sort of way. Other kids flair with stomach bugs. I'm not sure it's predictable unless you've done some genetic testing like 23 and Me. Even then, not every thing will be explained. Sometimes it's worth a try to do what's successful in someone else's child and see if you get the same results. Just know it might not work for you.

I take lemon balm from this company to help me relax and get to sleep. My son takes 600mg of enhansa 2x a day. I thought about New Chapter but it's about the same price for a monthly supply as Enhansa.

Allergy testing showed my son to have allergies. Daily Claritin and Flonase, has helped a lot. No more stuffy nose.

I love Diane Rehms show. Always interesting but am I the only one that her incredibly slow speaking drives crazy?

You are so right. There is simply no unbiased information. I've been digging around today. Spent way too much time, lol. I don't mind that she vaccinated. Heck, I did too. She constantly posts crap articles on her Facebook page. The most recent the measles outbreak in NY one. I posted the rebuttal one. She tried to tear it apart with a biased website from an Australian doctor. I give up. I don't have time to properly address it. I'm going to put myself on a 12 step program of not replying to vax pusher propaganda. It's a time suck and gets you no where.

Great link rowingmom. I'm in a "discussion" with a friend right now who is a huge vaccine supporter. We have butted heads a few times on this subject. She's a radical vaxer and will be.....until it causes problems with her daughter.

I would add an anti-inflammatory if you haven't already. 5mg/lb for ibuprofen.

Here's one link about H1N1 vaccine. Most of the research I find is about the flu vaccines. No one is researching vaccine damage. No money and it's certainly not in the interest of the pharmaceutical co's. They are the only ones doing the vax research and it's in their interest to make it loom worth while. http://www.naturalnews.com/043665_swine_flu_vaccine_narcolepsy_scientific_research.html%23 This is a link to a moms blog. She's a scientific reporter and debunks some myths perpetuated by big pharma, in collaborating with media and our govt. http://gianelloni.wordpress.com/ My son developed PANS two days after a flumist vax and 6 months following his MMR and chickenpox vax. He had some behavioral changes after the MMR and chickenpox vax that lasted a few months but were nothing like the 'big one' following flumist. In hind sight, this was a warning sign and the ball may have already been set in motion. Most PANDAS docs now say there are early, mild episodes before the big one that gets your attention.

My son is fully vaccinated too. If I had it to do over again, I would NOT do it. Absolutely no chickenpox, MMR, or Gardisil(which he has not had) and no flu shot or mist. I would be very selective and space them out. Newborns do not need a hepatitis vaccine that is sexually transmitted. That can come later. There is some research. I don't have time to link it right now but if I can dig up what I've read, I'll come back and post it. The headlines in newspapers does not reflect actual circumstances. It's fear mongering promoted by our govt.

We have a small group of moms in MI. We scour for opportunities. We've had booths at a couple of mental health group seminars, a couple of autism group seminars, one childhood violence seminar for social workers. We look for anything involving children.

My son had a huge ramp up of tics after IVIG. Took about 6 weeks to go away. We saw two steps forward, one step back for the first 3 months post IVIG.