putting together the piece

sss - yes, she's been treated for h. pylori and is currently taking Doxy for mycoP. (Also on an antiviral.) She's been on 400 mg. a day of Doxy for the last 30 days. Not seeing any improvement with the anxiety or intrusive thoughts.
 
nickelmama- you mentioned your son has the neuro and you have the arthritic. I've had weird pains in my neck, shoulder, back and knee - sometimes it seemed like it was cycling from place to place. I've often had pain in the back of my neck and it's crackly sounding. I've often wondered if it's Lyme, but have been to busy with my kids health problems to have myself checked yet. Think I will now. Also, I have Horowitz's book - I'll have to actually get it read!
 
philamom - Before the kids were born, I had a swollen lymph node under my arm, and doc noticed a cat scratch on my arm. I requested dd to be tested for Bartonella, and it was negative. (Igenex, I'm pretty sure.) I'm wondering if we might need to have that test redone.
 
putting together the piece - Fortunately, our NP is very interested in Lyme treatment and has been learning all she can. She didn't rule Lyme out after we got the results, but started treating some of the other issues first. I think now, it's time to start thinking more serious about the Lyme aspect.
 
Thank you all so much for your responses. I could not survive without this forum.

“I’m less hopeful that staying with the status quo is necessarily the way to go.” Couldn't agree more. If Robin Williams couldn't get help, who can? Something needs to change in the approach to treating not only depression, but many other mental illnesses as well.
 
It is so hopeful that more and more doctors are understanding the mind/body connection. Not good for the big and powerful pharmaceutical companies though.

On Wed, my mom found my dad unresponsive. A CAT scan was normal. A lumbar puncture for cerebrospinal fluid revealed an infection and was sent for culture. He was diagnosed with bacterial meningitis. He was started on multiple IV abx. He remained unresponsive for 24 hrs. For the next 24 hours, he had impaired mental capacity and was being a real stinker of a patient. He has no memory of it. Today, he is back to himself and being moved out of ICU to a regular bed for several more days of IV abx. The cerebrospinal fluid culture came back today. He has Lyme bacteria in it. He has Lyme disease. Back in Sept, I finally convinced him to do the IGenex test. Took me a year. He was CDC/Igenex negative but had many indeterminate bands and 41+. There is a lesson in all this. In the meantime, Lyme disease nearly killed my dad.

When that type of slip happens I give activated charcoal or Chorella to bind with the offending substances and reduce the resulting offending behaviors. It helps especially if you can address quickly.

You are in a tough spot and one. I relate to very well. I too spent years explaining my son's behavior and illness. You two will have to set some rules sort of speak. For us, it isn't over despite my son being kicked out of the house. Now we battle over rent, lost phones, smoking, stolen bikes, meds and treatment and finances. We sort of stopped speaking too much about it. Easier. I knew he didn't get it and that in his brain he couldn't get it. He did not see what I saw nor did he hear everything our son would say. I've stopped expecting anyone to get it.
Chronic illness is hard on any family, but a misunderstood, chronic disease is worse.
For us we had to calm the reacting to the behaviors part. We had to, for sake of sanity agree that we wouldn't deal with the illness the same way and accept it and respect it.
I've often wondered if it would have been easier on my own. Things are getting better I think. Hang in there!
K

Here is some wording that may be helpful:
 
As _____ symptoms may occur in a waxing and waning manner and may not be evident at all times, I recommend that the above illness and symptoms be considered in all academic planning decisions to enhance the academic progress of this patient. (You may want to be more specific with accommodations).
 
Can you pm your email to me?

Please get to an LLMD asap. Both my kids are PANDAS/PANS with chronic Lyme. It is a bear to treat and a good llmd is necessary if you want them to get well.

Oh Smarty. In my blunt manner: please do more than the 2 weeks of Doxy! Please do at least 4-6 weeks. You say things are getting better (except residual fallout) do you think it's from Doxy? Do you think this is a brand new tick bite? Be very, very careful in the sun on Doxy. Easy to get a chemical sunburn from it. Sunscreen or stay out of sun if possible. You also want a hefty dose of the Doxy 2x a day. The Lyme rash is absolutely definitive: infected with Lyme disease. If it's brand new, that's the best news if you have to have it, but drown it out NOW with enough Doxy and duration.
 
As far as school, my dd9 is now doing homeschool online through our district, w/ a very small class meet 7 other kids w/ teacher for 2 hours 2x a week. Astonishing, it's going much better than I thought possible. Although we are re- treating Bart, God help us. But I couldn't take the stress, flaring from others, bad friend choices, possible/ past bullying, etc. we will finish out the year/ 4th grade this year and go from there. Of course I don't have an outside paying job, either. So it was possible.
Hang in there-- S

We never did travel down the PANDAS (strep) path, even though DD's first major exacerbation was caused by a strep infection.
 
When we discovered that along with a couple of positive lyme-specific Igenex WB bands, DD was highly positive for bartonella (one of the lyme coinfections that can be a stand-alone infection as well), our LLMD told us that when we had successfully treated bartonella her PANS symptoms would resolve.
 
They have. Like LLM said, a long road to recovery, but DD has no permanent damage, and has recovered from her diagnoses of Tourette's, Aspergers and motor delay. Her recovery has been beyond my expectations.

So happy for you!!!!!!

23andMe tests for 990,000 "snps" (pronounced "snips") which are mutations of genes. One gene can have many known snps. MTHFR has something like 10 known snps and 2 that are well studied. Every gene turns switches on or off. If you have a mutation, the light switch might get dimmed instead of turned off or the switch might always be stuck on at 150 watts instead of 75 watts. (unlike a deletion, which means no light switch at all and causes more serious illnesses).
 
So 23andMe tests your spit for all these snps for thousands of genes, implicated in thousands of medical conditions, physical traits, etc. Using the company's website reports are mildly interesting and sometimes informative. You can chose to unlock reports about your risks for alzheimers and breast cancer but you can leave them locked if you chose. My problem with these reports is they don't tell you what to do about your mutations. Ok, I have a 40% greater chance of developing heart disease. But what do I do to sway the odds more in my favor? 23andMe only tells you the problem, not possible "solutions"
 
But you can take your raw data from 23andMe and run it thru a free app called geneticgenie.org ($10 donation well worth it). This searches your data, strips out the 30+ snps involved in the methylation cycle (the body's way of turning vitamins/minerals into cell energy and neurotransmitters et al) and gives you a color coded report. Each of your parents gave you one copy of each snp. If you have two normal snps, your report will show this snp in green. If you have one "good" copy and one mutation, it shows in yellow. If you have two mutations, it shows in red. You then take this info and pour over the documents I pinned in the "helpful threads" link at the top of the forum.
 
Once you know your mutations, you can take supplements, or avoid certain supplements/foods, to help the boy take detours around your yellow and red mutations in the methylation cycle. So if you have an MTHFR mutation and can't turn folate (vitamin B9) into methylfolate on your own, you can detour around this step by supplementing directly with methylfolate and avoiding the B9 found in fortified cereals and multi-vitamins. (MTHFR plays a role in serotonin synthesis as well as heart disease and cell energy) if you have different mutations in the methylation cycle, you can take or avoid other supplements to detour around those roadblocks.
 
How does this help with pandas? Well, some of the snps in the genetic genie report play a direct role in neurotransmitter synthesis. If you have a Pandas kid who also has a mutation that prevents them from producing enough serotonin even on a healthy, good day, then helping them work around this road block will certainly help them reduce anxiety on both good days and during pandas flares. If they have a problem breaking down dopamine, the last thing you'd want to do is give mega-doses of Vitamin D3, which is a precursor to dopamine, even tho D3 is important to the immune system. So knowing your child's methylation snps helps you customize supplements so that their bodies have an easier time achieving balance in the neurotransmitters. Then, if/when they do have pandas issues, hopefully things aren't as severe.
 
Where I think it's really helped is for those of us who've gotten the worst behind us but can't seem to get that last 10-20% of recovery. Treating methylation roadblocks seems to have helped some of our kids reach that full potential.
 
It isn't a "cure" for Pandas. It won't prevent future flares. But it's like exercise. It won't prevent you from catching a cold, but if you're in good shape, it'll probably not hit you so hard and you'll probably recover much sooner than if you're a couch potato with poor nutrition. And, it seems to help our kids with mood issues not associated with infection.
 
So 23andMe is only the first step in collecting data. You then need to do other stuff to make that data useful.

I am going too!