nicklemama

Call a meeting and lay it on the line now. You can get a reduced workload.

PLEASE keep us updated. My husband would kill me if I ordered another product that didn't work!

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.

I really appreciate your post.
 
We too never thought we were dealing with Lyme until we had antigen and PCR matches 'positive results'. We went to great length with our testing to prove Lyme. I was also convinced we were not dealing with mold. Kids C4A's were normal, we had touch/fixed everything top to bottom in our home 5 years ago, etc. I was very wrong and our older son's mold results were sky high comparatively. For us, it was so much more.
 
However, with each intervention we are closer to our goal of recovery for our entire family.
 
Nicklemama I can not say its been an easy treatment process and that I immediately felt better..... it took time. However, 4 years later I am off antibiotics, gained my spirit back, can be present to our children after 4 p.m., practice yoga 4 times a week and feel better than I have in years. I have been slightly symptomatic for 15 years and those symptoms worsened with each pregnancy and later with each illness and mold exposure.
 
For those that don't live in endemic areas and do not remember a TICK bite, I thought I would post the most recent study regarding sexual transmission out Jan. 27th, 2014. Both my DH, I grew up in endemic areas, both had tons of exposure, my husband was only slightly symptomatic and was easy to treat with herbs and anti-parasitic. I was not symptomatic until I met him.
 
http://www.researchednutritionals.com/information.cfm?id=292

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.

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.

I have been through this crap with these kinds of Physicians for over 12 years. Hold your head up and hold on to your resolve. Your are the Mother and you know your child best. Dust off your pants Sister and move on! You are a good Mother and you will find the right Doctor for your child. You may very well have to travel. My first child manifested 12 years ago and we ended up traveling 12 hours to find a Doctor. It is very validating when you finally find a specialist who understands your child and understands the issue. It's worth the effort. Get an appointment with a PANS specialist. Don't mess around with main stream medicine anymore. Hang in there. You are doing the right thing.
 
Dedee

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.

So we finally got in to see Dr. Bradstreet in Buford, GA yesterday. AMAZING experience. He is a genius. the man knows so much about the immune system that it was baffling. I needed for him to dumb down a lot of what he was getting into because it was over my head. He has a wonderfully kind personality, no God complex and he took to ds immediately and vice versa. He even gave me his cell #!!!
 
We went over all the testing that I wanted to do and we prioritized based on what he thought would give us the most actionable information. We did and OAT in the office and will be giving blood next week for: Lyme, MycoP, H. Pylori, Immune pane (IgG, IgA, IgM, etc) and a cunningham test. He feels that he will be able to tell based on cunningham test if ds would benefit from IVIG.
 
We are also testing nagalase which is an indicator of low macrophages and if they are low then we will be getting GcMAF. He gav eus Vit D3 and Krill oil immediately and sent me to a website to buy Luteolin,Quercitin and Rutin in this one capsule that is supposed to boost Mast Cells.
 
He feels that DS is triggered by Strep as well as allergies to food and environment. He feel positive about ds's outcome. I guess the tests will tell us more as far as any other infections.
 
I feel like we are FINALLY in good hands and the great thing is that he has treated my friend's son with fantastic results.
 
Right now ds has come off a flare triggered by brother's strep and seasonal allergies. Allegra has helped us tremendously.
 
Bradstreet also wants us to go on prophylactic abx because he thinks everyday is too much. However, I don't want to change the protocol until he is tic free. I am so afraid of a regression once off the abx!!!!!
 
All in all it was a very positive visit and I am feeling hopeful.
 

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.

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.

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.

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

I heard Dr. Kenneth Bock ("Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies") speak at an Autism One conference a few years ago. He was compelling and made the most sense on this topic that I've ever heard.
 
While there's been concern about mercury, thimerasol and other preservatives in vaccines contributing to rates of autism in the population, Dr. Bock focused on the onslaught to the immature immune system. The "modern" version of immunizing our babies is relatively new in the way in which multiple vaccines are combined (MMR, for instance), and the rate at which they are administered has been escalated dramatically in recent decades, as well. If our immune systems are like a glass, and the smaller the person, the smaller the glass, then our children's glasses get topped out fairly quickly and likely cannot handle this onslaught.
 
I think this is a direct quote, but it's been a few years so take it with some measured consideration. I remember Dr. Bock saying something along these lines: "I'm not against immunization, but I'm for smart, reasonable, timely immunization. Giving these children these bundled vaccines, all in the space of a few months, is not what I consider 'smart'." I also recall some discussion about why in the world the CDC recommends that babies be inoculated for Hepatitis C when it is a sexually-transmitted disease.
 
My DS was given all his "shots," as scheduled. Like Nicklemama, if I had it to do over again, I wouldn't do it that way. I can't document, time-wise, that any of the immunizations contributed to what he went through in later years, but since the immune system appears to be involved, it's hard not to consider the possibility that they did.
 
And finally, as for the doctor who discovered the link between autism and vaccines (Wakefield) having "faked" his data . . . I think we need to keep in mind the sort of negative flack our own Dr. Swedo has faced in trying to gain credibility for her research findings and PANDAS. Big Pharma has a long reach and deep pockets, and it was in their best interest to vilify Dr. Wakefield. I'm not privy to the inner details, and Dr. Wakefield may have made some mistakes and/or pushed some boundaries, but if you follow stories of families of autistic children at all (Autism One, etc.), there does appear to be a relationship between immunizations and incidents of autism.

I don't think much can be found on the topic of vaccination damage research.
 
There is no financial incentive for pharmaceutical companies to do this work. It would be against their own best interests to publish negative findings (ie loss of profit), so they will selectively publish only the positive, leaving negative findings on the cutting room floor.
 
The real problem is that pharmaceutical companies are allowed to do this type of research on their own products in the first place. Any negative results stemming from research done by unbiased researchers is quickly dismissed as fear-mongering.
 
The immune system's of our children's generation have never been allowed to develop properly. They are vaccinated at birth and not allowed to produce any type of fever reaction (recommendations for tylenol for every pain/sniffle).
 
So as a result any infection that our/our parent's generation was able to handle with a properly functioning immune system, ie.measles, chicken pox, may actually pose more of a threat to our children than it did to us.
 
The whole thing is a mess.
 
I saw with my own eyes the regression of motor ability produced by DD's MMR vaccination. I saw her lose her ability to communicate, her development of toe-walking and other ASD traits. In our case, with OT/PT they have mostly resolved, but it happened in front of my eyes when she was 16 months of age and even though my observations were dismissed by our doctor as not being caused by vaccination, I know in my heart they were real. My only regret is that I continued to trust and believe our doctor.

Yes. But it need not be an LLMD. A family doctor, DO, Chiropractor could run Igenex. You can print the order form off their website. I suggest just running the Western Blot Igm/igg for $200 to see what shows up. Many times, tick-borne co-infections are also involved, but that is something you could look into later if needed.

Doing a little outreach and advocacy this weekend with fellow warrior moms from the Michigan/GreatLakes PANDAS/PANS group. Our ringleader manager to secure a table as an exhibitor at the Michigan Chapter of the American Academy of Pediatric conference today and tomorrow in Grand Rapids. We will be trying to reach out to the pediatricians in attendance.

We had quite a few great conversations with the pediatricians who stopped by the table. Most are on our side but don't know where to start. Lucky for them we had information in some beautifully printed folders done by Kristen B. We had a few conversations with a couple of buttheads but they were few and far between. Talked to quite a number of med students. I'm getting old because they all looked like they were in junior high, lol.
 
I'm manning a table next month at a local conference for kids with issues like ASD, ADHD, etc... Kristen had a great table banner printed up that we've been using. It's all very professional looking. We provided some info from the Moleculera website. I spoke with Dr. Shimasaki on the phone last week for his permission. He's a super nice guy.

You needed to read the entire article. Every person with a systemic Sacc B or Sacc C infection in this paper, had two factors, IV catheter and antibiotic therapy. The mode of transmission is assumed to be nosocomial(hospital acquired) from the hands and from eating raw, unwashed fruit/veggies. The caution here is supplementing with Sacc B while you are undergoing IV antibiotic therapy and likely if you have any sort of port.

You needed to read the entire article. Every person with a systemic Sacc B or Sacc C infection in this paper, had two factors, IV catheter and antibiotic therapy. The mode of transmission is assumed to be nosocomial(hospital acquired) from the hands and from eating raw, unwashed fruit/veggies. The caution here is supplementing with Sacc B while you are undergoing IV antibiotic therapy and likely if you have any sort of port.

Why don't you ask the nurse navigator to provide you with documentation that this physician is, in fact, a PANDAS expert.

Polio variant? I'm hoping they are saying its not polio just because those children have been vaccinated against polio. I read something interesting yesterday that talks about the original polio outbreaks and its relationship to an agricultural herbicide for mold. Very common. My lyme brain won't allow me to recall it right now, lol. It won't surprise me if its a polio variant that has mutated in the face of a chemical. Polio is/was a harmless enterovirus that mutated.

Polio variant? I'm hoping they are saying its not polio just because those children have been vaccinated against polio. I read something interesting yesterday that talks about the original polio outbreaks and its relationship to an agricultural herbicide for mold. Very common. My lyme brain won't allow me to recall it right now, lol. It won't surprise me if its a polio variant that has mutated in the face of a chemical. Polio is/was a harmless enterovirus that mutated.

This is the Pelletier family, I think. She has mitochondrial disease. Glenn Beck has been advocating for the family on his show since he learned of the situation. I'm no Glenn Beck fan but I am grateful he is bringing attention to the situation.