PANDAS/PITAND "reactions"

[mama2alex]

An LLMD has been treating my ds10 since last September. He is doing better in many ways, but we still see a setback - increased OCD, moodiness and difficulty going to school - when he's exposed to strep or a virus. Has anyone seen the autoimmune reaction to infections disappear with Lyme/coinfection treatment? How long did it take?

 

Thanks!

Jennifer

[KeithandElizabeth]

Hi Jennifer:

 

Our oldest daughter finished treatment for strep, lyme, babesia, mycoplasma and one parasite in October of 2010. She has been off antibiotics since November (5 months). She has had 98% days, but we have had to put her back on antibiotics for 3 ten day periods when we did see "PANDAS" (OCD/TICS) symptoms come back. As time goes on, it seems as though her regressions with illness have a shorter duration (a couple of days) and her downfall is not as low. For instance, her bad day with a regression is still 85% better than the worst of the worst.

 

Our LLMD feels that it takes months to heal the damage from all of the microbes and that the immune system has a short term memory and when reinfected with an infection within the first 6 or so months of treating lyme, you may see the same symptoms that you had with lyme disease.

 

So, I think that once done with lyme or any other microbe treatment, you may still have some lingering symptoms until the body has had a chance to fully heal.

 

Elizabeth

Edited April 12, 2011 by KeithandElizabeth

[sptcmom]

Ds started treatment for PANDAS in March 2010 and started for Lyme in sept 2010. We are at 100% for almost a month now and by God's Grace didnot see any PANDAS type autoimmune upticcing after a couple recent bad viral infections that we used to earlier.The key for us has been A.R.T., holistic approach and reeducating a wounded immune system holistically.

The immune system needs blueprints of healthy organ systems to remember what healthy tissue is and retrain its T and B cells. I use homeopathic meds (tasteless and odorless liquids, very stable and can be synergistically combined with any foods even) for immune system retraining. Homeopathic Nosode remedies provide the immune system with artillery to fight off any infection and homeopathic sarcode remedies help it recognize healthy tissue (brain, thyroid, hypothalamus, liver, etc) based in each child's ART results or needs.

DS9 is now responding to viruses etc with a fever (for the first time he's actually mounting an immune reaction!), and with holistic antivirals, he recovers and his body is identifying the microbes correctly at long last without attacking healthy tissue or generating anti neuronal antibodies for motor tics.

My personal belief is the reason for lingering symptoms post successful treatment is the immune system left to re train itself and theres bound to be glitches because its been glitchy for so long so to speak. Adequate immune reeducation, specifically targetted as needed is an essential component of Lyme/PANDAS treatment or any chronic illness for that matter (Autism even).Thats how a natural immune system grows and develops in a normal child and thats what we need to give back to our children. Allopathci meds have absolutely no role in this arena and can't really help. Homeopathic/herbal is the only way I feel.

Jodie

Edited April 12, 2011 by sptcmom

[mama2alex]

Thanks for the responses so far. I hope to see more, as I think this is a really important discussion for everyone. Jodie, I'm particularly interested in what you are talking about. What is ART? Can you go into more detail about how you've gone about "retraining" the immune system and how herbals and homeopathic medicine does that? Did you figure this out yourself, or have you gone to a homeopath?

 

Something about "retraining the immune system" rings a bell with me. My son has asthma almost every time he gets sick, he's had pneumonia 6 times and I believe it would have been 7 or 8 if he hadn't been on antibiotics the last 1 1/2 years. He has trouble transitioning, gets into behavioral and emotional ruts, and has OCD. These are all patterns that his body/mind has seemed to get stuck in, so maybe we do need to retrain his immune system.

 

During his most recent illness, he did have a very slight fever, but to me this was a good sign, as he hasn't had a real fever since his onset of PANDAS almost 2 years ago.

 

I also agree with fixing the gut. We have been working on this since my son was 3, but am not at all sure that this has been completely accomplished. I need to retest for yeast, etc, but was sidetracked after we did 3 days of stool samples (an absolutely excruciating process all around), sent it to the lab, then learned that the testing kit the doctor's office had given us was EXPIRED. This was discouraging, and I haven't rerun the test yet. Maybe over spring break we'll get it done.

 

Let's keep this discussion going!

[FallingApart]

I never realized that about the lack of fever! But we have it too! Both DD and I have never had a fever that I can remember!

 

Elizabeth, your story gives me so much hope. I have been on this board with you for what seems like forever and I am thrilled to read your report.

 

ART is Autonomic Response Testing. ART is a highly effective, advanced technique of biofeedback muscle testing to determine imbalances in the body, their root causes as well as potential remedies. from http://www.drkatharina.com/nutritional-medicine/ This has been enormously effective for our family. You are unlikely to find an MD who will do this although I would think that a good LLMD would do it. I agree with the pp that this is imperative in healing our children and our families. It's what has kept us out of the hospital and from doing our monthly IVIGs for PANDAS.

[KeithandElizabeth]

Our LLMD uses ART in order to diagnose and treat all microbes. We had positive ART tests on certain microbes when the blood tests were negative. Both of my children had babesia, which is often hard to pick up via bloodwork. We have found ART to be especially beneficial in determining the most effective antibiotics/herbs/homeopathy remedies for each child. Our daughter was able to complete lyme treatment in 8 months with ART and our son, who was extremely sick, was able to complete treatment in one year.

 

 

Falling Apart - great news that the ART has been so beneficial to your family as well. I have always followed your story so closely and I am so happy that you are finding answers and solutions regarding the health of your family!

 

Elizabeth

Edited April 13, 2011 by KeithandElizabeth

[sptcmom]

A.R.T. is a Dr Klinghardt assessment and treatment modality and you can read more about it on

www.klinghardtacademy.com and look for link to Autonomic Response Testing.

 

I use my own protocols as a healthcare and ART holistic practitioner (pediatrics) and an ILADS member/practitioner.I owe a lot of my direction to many wonderful moms on this forum- Wendy, Elizabeth, Kim, Mary just to name my main supermoms without whom my journey would never have happened for my family and so many families that I've been able to help since.I am happy to help, discuss and learn anytime I can. One thing I've observed is my LLMD mentors included, we're all constantly learning. No one has all the answers as each child is so unique with respect to physiology, anatomy even I find and internal biochemical environment in the body since they're still growing and developing. With adults we can be a little more generalistic with the care plan.

Anyways

a note about yeast

The body produces yeast as a sideeffect of abx yes, but also, the body produces yeast as a survival mechanism to bind toxins like heavy metals, biotoxins, microorganism remnants etc. So, many times docs forget to add appropriate binders when prescribing anti yeast protocols. When you kill yeast these boud toxins are released into the body. Chlorella, microsilica, cilantro extract are all wonderful binders for heavy metal etc and should be used diligently when on antiyeast meds, homeopathic or otherwise. Biotin slows down yeast metabolism, ADP kills yeast and other organisms holistically speaking. otherwise Diflucan, Nystatin work too as you all already know.

 

We did a combo abx and holistic protocol for DS.Were able to reduce conventional abx drastically (2200mgs per day combo down to 250 mgs twice a day to cycling with no abx) once we incorporated holistic meds- homeopathic and herbal.

 

Jodie

[ziva]

The ART sounds like something I would love to look into more.

 

Where do I even start to try to find a ART practitioner. I am Illinois (Western Suburbs of Chicago)

 

Thanks!

[KeithandElizabeth]

I will PM you our MD info.

 

elizabeth

[sptcmom]

The ART sounds like something I would love to look into more.

 

Where do I even start to try to find a ART practitioner. I am Illinois (Western Suburbs of Chicago)

 

Thanks!

 

You can contact www.klinghardtacademy.com to find a practitioner closest to you. There are several excellent practitioners across the country and you don't have to travel very far. I know the academy is trying to collate a list once all practitioners complete their certification exams, requirements etc.

I am in NJ but there are a few ART docs much closer to you. You will find TONS of info on ART, other Klinghardt protocols and contact info etc.

Jodie

Edited April 15, 2011 by sptcmom