sf_mom

I haven't read all the responses lately so I apologize if someone has already mentioned this to you since my last post.
 
On of our Dr's believes SKIN PICKING and NAIL BITING is typically trigger by one of three things; Vitamin/Mineral deficiency (Calicum, B, Copper/Zinc ratios), Parasites or Yeast.
 
Again, I would talk with Dr. M about running the SpectraCell Vitamin/Mineral test and also a comprehensive stool analysis. The stool analysis will look for Parasites and Yeast. The SpectraCell will look for the inner blood cell utilization of vitamin/minerals and not serum levels.
 
At one point our older son was biting his nails non-stop. We had been doing chelation with him which depletes vitamins/minerals and nail biting started shortly after starting the chelation process. Since adding higher levels of Zinc, Calcium, Copper his nail biting has completely stopped. We were supplementing these vitamin/minerals at the time but much higher doses have helped: 120 m.g. of zinc, 6 m.g. of copper, 1,000 m.g. of Calcium. I do not recommend supplementing at these higher doses unless you have a Dr. following the copper/zinc ratios.
 
I am hopeful with antibiotics and perhaps some zinc you will be make some headway with the eating issues.

Decent Symptom List For LYME/Co-infections.


LYME DISEASE AND THE CO-INFECTIONS
07/26/2010

Lyme disease is a major health problem in the United States. Since the infective agent, the bacteria known as Borrelia burgdorferi, is so difficult to locate and diagnose using present-day blood tests, it often goes undiagnosed and untreated or improperly treated. Even with practitioners who consider themselves Lyme-Literate Medical Doctors (LLMDs) or Lyme-Aware Medical Practitioners (LAMPs) diagnosing this infection can be very frustrating for several reasons. There are several great books that address the controversy, the politics, the diagnosis, and the treatment, and I will refer you to them for further information. However, two of the most important reasons that proper diagnosis is so difficult is that Borrelia burgdorferi can change its shape and form as a way of protecting itself. These protective forms rarely, if ever, show up in the blood and hide away in other tissues that would require biopsies to identify them. And, second the blood labs used to identify our immune response to these organisms have not been completely refined and, at best are 70% effective and, at worst, only 30% effective.

The majority of healthcare providers, not being Lyme knowledgeable, busy themselves treating the symptoms or possibly even treating the wrong disease. Lyme disease is also known as "The Great Imposter" or "The Great Imitator." It can mimic such conditions as chronic fatigue syndrome, fibromyalgia, autoimmune arthritis, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig's disease), schizophrenia, bipolar disorder, and many different heart and vascular conditions. From the practitioners point of view, it makes it even more difficult to properly diagnose and treat when Lyme disease is very often accompanied by any a number of, just as bad or worse, organisms such as Babesia, Bartonella, Ehrlichia, Cytomegalovirus, Epstein Bar Virus, Herpes Simplex I and II, Human Herpes Virus 6 (HHV 6), Rickettsia, and Mycoplasma.

I have listed below some of the symptoms related to chronic disseminated Lyme disease (Borreliosis), Babesiosis, and Bartonellosis. You will notice that there are many symptoms that overlap with these three infections.

Please circle (O) the bullet if you are presently experiencing this symptom and place and (X) at the bullet if you've experienced this symptom in the past. Next to the (O) or the (X), please rate the symptom on a scale from 1 - 10. Very rarely or few symptoms would be a 1 while often and/or severe would be a 10.

Lyme Disease


Arthritis-like joint pain and swelling (often migrating or moving from joint to joint) "Brain fog" with poor concentration, focus, and/or attention Disrupted sleep cycles, resulting in poor quality sleep, too little sleep, difficulty staying asleep, or early awakening Back pain Light sensitivity and/or blurred vision, increased eye floaters Ear symptoms (hearing loss, ringing in the ears, or sensitivity to noise or certain frequencies) Chronic and/or severe fatigue with minimal stamina Facial paralysis (especially Bell's Palsy) Chronic pain and tender points throughout the muscles of the body Walking and balance problems Headaches Impaired muscle coordination Impaired reflexes Memory loss (especially short-term memory) Muscle weakness Nerve symptoms (numbness, tingling, burning, vibrating, or shooting) Night sweats, clamminess, unexplained fevers, flushing Unexplained weight change (loss or gain) Unexplained hair loss Swollen and/or tender glands Sore throat Testicular / pelvic pain Unexplained menstrual irregularities Unexplained breast pain / milk production Sexual dysfunction and loss of libido Upset stomach with nausea and possibly pain Changes in bowel function (constipation or diarrhea) Muscle twitching of the face or other muscles Increased motion sickness, vertigo, or poor balance Tremors Confusion, difficulty in thinking Difficulty concentrating / reading Disorientation (getting lost, going to the wrong places) Speech difficulties, vocalization problems, problems writing, word block Exaggerated symptoms or worse hangover from alcohol
Over 50% of those with chronic Lyme disease exhibit mental and emotional symptoms including:


Behavioral disorders including impulsive acts of aggression and violence Extreme mood swings between depression and mania Chronic depression Dementia Eating disorders Hallucinations Mood swings Panic attacks Extreme fears or phobias Schizophrenia Personality disorders (radical change in someone's personality) Thoughts of suicide Irritability
A large percentage of individuals with Lyme infections also exhibit heart and vascular symptoms including:


Shortness of breath with minimal exertion Gasping for air Irregular heart rhythms (occasional irregular beats or beating too fast known as tachycardia) Chest pains / soreness in the ribs Enlarged heart Palpitations Fainting sensations Non-productive cough History of heart murmur or valve prolapse Two major clues that Lyme is the cause of the above symptoms are: the progressive worsening over time of a multi-system pattern of symptoms, and the tendency for these symptoms to wax and wane in a cyclical fashion. That is, every 3 to 6 weeks, it seems that the symptoms get worse for a few days, after which they resume the previous pattern.

Babesiosis


Chills Fatigue and often excessive sleepiness Night sweats often drenching and profuse Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc) Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud Depression Episodes of breathlessness, "air hunger" and/or cough Decreased appetite and/or nausea, perhaps vomiting Spleen and/or liver enlargement Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate" Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas) Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme) Dark urine Enlarged lymph nodes Significant memory changes Struggle organizing Profound psychiatric illnesses Significant fatigue, daytime sleep urgency despite nighttime sleep Waves of generalized itching Balance problems with dizziness Severe chest wall pains Random stabbing pains Weight loss Sensitivity to light Sleep in excess of 8 ½ hours per night Sore throat with unproductive cough

Bartonellosis


Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion) Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus" Headaches, especially frontal (often confused with sinus) or top of head Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis) Sore throats that are recurring Swollen glands, especially neck and under arms Anxiety, panic, or worry attacks; others perceive as "very anxious" Agitation, irritability, rage, impulsivity, or aggression Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature Poor sleep (especially difficulty falling asleep), poor quality sleep Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory) Muscle pains, especially in the calves; may be twitching and cramping also Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis) Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth Tremors and/or muscle twitching Heart palpitations and strange chest pains Episodes of breathlessness Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins Gut symptoms, especially acid reflux Shin bone pain and tenderness Fainting Bladder pain, irritation, infections Genital disorders Obesity and body swelling The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006)

http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/

Our older son was neurotypical until PANS at age 5 1/2. He was only on antibiotic once prior PANS at age 4. Strep, annual vaccinations and a virus all in a three week period triggered his cascade that lead to PANS. He too had multiple issues: chronic infections/viruses: Lyme, Bartonella, Babesia, Coxsackies, HHV6, yeast, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues. We did not find anyone thing to be the panacea with regards to treatment however all of it added to his overall successes.
 
To most he appears to be a perfectly normal child. To us, he has maintain a 90% baseline or better for the last couple years. His symptoms today are predominately physical in nature: not feeling well, headaches, etc. If chronic infections like Lyme is involved it can be a long rocky road to recovery. We believe he will 'now' live a normal life. I learned way more than I cared to about medicine. It can be a full time job but we have 3 sick children.
 
Things that help us get to where we are with older DS
3 HD IVIG - Responded well but could not maintain recovery then discovered chronic infections Steroids - Helped but since he is dealing chronic infections we have not used them since initial onset Testing extensively for chronic infections/viruses Combinations antibiotics Understanding his methylation issues, detoxing abilities Yearly comprehensive stool analysis Yearly vitamin/mineral/amino acid testing (now testing every 6 months) Addressing gut issues as best we can while on antibiotics IV vitamin/minerals Ozone Therapy - We feel this has really gotten at the biofilm issue Healing time I am sure I left a few things off the list. One thing we did not do was remove his tonsils.

MOLD!!
 
We had an unfortunate event happen this last summer. A 150' pine tree fell on our house and took down an old growth oak with it. There was extensive structural damage to the home. When the tree fell it brought a plume of debris through the house and we definitely noticed a immediate change in our younger DD and a mild slow regression in older DS. We weren't sure if it was the stress of the event or the toxic debris. When we started investigating the damage to the home by pulling off the roof and siding we found behind the walls both white and black mold. The smell of the house changed instantly when the tree fell and has not abated. Thankfully, no one was hurt, we were well insured so our insurance paid to have the house environmentally tested. We had it all: lead, asbestos and now high concentration of Trichothescene (black mold) especially in the rooms that were impacted. 500 times more concentrate in the bedroom section verse living room.
 
I mention all the above because at that point we felt we had to test all of our children extensively for mold. All three previously had normal C4A. We did the Shoemaker Panel and there was some indication that older DS might have a problem but not much... MSH was a little low and his TGF-b1 was a little high. We also did the Mycotoxin Urine test by Real Time Laboratories and they found our older son was positive for Trichothescene at 6.98, reference range .18 to .2. Same mold that was found in high concentration in the bedrooms that the tree impacted. We are now treating for mold.
 
I highly recommend the Mycotoxin Urine Test. It is a little expensive but was well worth it. We are using the results as a baseline to determine detoxing abilities. I think with CD57s that low you really have to look at all angles. Another test that should be on your list is Nagalase (treating can help get the CD57 numbers up).

We have been using Buhner's full bartonella protocol since Apr 2013 after discontinuing 2 years of abx treatment for bartonella. Here is a link to the protocol, but I really would suggest buying his book on the Mycoplasma and Bartonella coinfections:
 
http://buhnerhealinglyme.com/
 
BARTONELLA
Research is ongoing, this is the most up to date protocol:
• Sida acuta tincture (from Woodland Essence or julie@gaianstudies.org) ¼ tsp 3x day for 30 days
• Hawthorn tincture, same
• Japanese knotweed, (tincture, same dose (from same sources as Sida acuta, above), or capsules from Green Dragon Botanicals 2 capsules 3x daily)
• EGCG 400mg +- daily
• Houttuynia (Yu Xing Cao – 1st Chinese Herbs, powder – use “LYME” code at checkout for 10% off) 1 tbl daily
• L-arginine 5000 mg daily in divided doses
• Milk Thistle seed, standardized, 1200 mg daily
All for 30 days.
PLEASE NOTE: If you have active herpes, chicken pox, or shingles DO NOT USE L-arginine. see also: bartonella
 
We are not using l-arginine, as I think many of our kids are also dealing with viral infections.
 
After 7 months of this I added the combination tincture cryptolepis/sida/alchornea from WoodLandEssence. This produced a significant babesia herx which included chest pressure/air hunger and sighing. So now I know we are also dealing with a babesia-like-organism (protozoa) as well.
 
The doses DD is taking are lower than those outlined in the above protocol, but Buhner's associate said that as long as DD remains on the protocol for 1-2 years she will eventually eliminate the infections.
 
The effects of these herbs is real. They differ from antibiotics in that they contain multiple constituents, not single ones like abx (which the bacteria are quick to become resistant to).
 
DD is maintaining 98% improvement with no flares (just the odd herx from changing herb dosages) and has for the last 9 months.
 

Our younger son had aneurysms at 5 1/2 months of age. He was cleared by his cardiologist at 18 months. He started antibiotics at 2 1/2 years of age for PANS. At 3 1/2 years of age we discovered his PANS was triggered by chronic infections and viruses. He has been treated non-stop since with antibiotics for several infections and viruses that can impact the heart: Coxsackies (very high titers), Bartonella and Lyme. We believe the Bartonella, Lyme and maybe even the Coxsackies were passed to him in-utero and the heart related issues are connected to his chronic infections/viruses. He is now 6 1/2 years old, still on antibiotics and thriving.
 
We saw our cardiologist at about 4 years of age and we did not find her to be a PANDAS/PANS believer or that the two might be related. Our Lyme Literate Dr. 'LLMD' does understand the heart/infection connection and will most likely see a different cardiologist that is referred by our LLMD for his next follow-up. Chronic Strep, Lyme, Bartonella, Coxsackies can all impact the heart. I would spend some time googling the relationship. You might also checked for specific infections with your PANDAS/PANS Dr.

I am not sure if I mentioned this previously but we have at least 5 Dr.'s in the Bay Area that treat PANDAS/PANS. 4 are extremely versed at looking for all of the potential chronic infections (definitely the rage component), understand mold, environmental toxins, heavy metals, detox, methylation, genetic testing, implications of yeast/gut issues, etc. 4 of them are considered integrative and 2 of those Dr.'s will prescribe hdIVIG if needed. The other Dr. treats similar to Dr. B in CT but also has an interest in the inflammation aspect for PANDAS/PANS.
 
I am sure you have a comfort level for Dr. B but it is a long flight to CT. If you ever need a second opinion or would like to save the time, energy and money from travel back east please feel free to PM. I can also connect you with others seeing these particular Dr.'s.

It could also indicate yeast. Ammonia is a byproduct of Yeast. Symptoms could include white patches of skin usually on face, itchiness 'bottom of feet, palms of hands', eczema, cough, moodiness, fatigue, silliness especially after eating, pacing, biting nails, skin picking, etc. Fruits, sugars, carbs will feed yeast and why some crave it.
 
"One of Candida’s byproducts is ammonia, an alkaline gas that forms when the Candida Albicans yeast ferments sugar in your intestine. Ammonia increases the alkalinity of your digestive tract, and has even been found to promote the growth of other yeasts."

I also think Hydrogen Peroxide is good form of treatment for ears. You can mist it through a nebulizer as well .5 'Food Grade' peroxide mixed with 5 ml distilled water and hold mask to ear. You might notice a mild temporary increase in symptoms as die-off occurs.

Have you done a comprehensive stools analysis on her? It could be yeast or low absorption. Enzymes would help with low absorption. Is she diagnosed with Bartonella? Bartonella can really root itself in the intestinal track.
 
"Bartonellosis is generally suspected when neurological symptoms are out of proportion to other systemic, chronic Lyme disease symptoms. Patients may suffer with gastritis, lower abdominal pain, sore soles, and tender subcutaneous nodules along the extremities. Lymph nodes may be enlarged and accompanied by a sore throat. Additional manifestations may include:" - See more at: http://www.envita.com/lyme-disease/chronic-lyme-disease-coinfection-bartonella-causing-more-chronic-fatigue-problems#sthash.0iipuOuU.dpuf

I first used ozonated olive oil topically for scraps, bruises, rashes, eczema, mouth sores, etc. which was extremely helpful.
 
Then I had a sinus infection that was ongoing for over a year and antibiotics were not helping. It took two ozone injections to clear things up. Worked phenomenally but it also turns out many sinus issues are truly yeast/fungus and maybe why antibiotics didn't help me. After such great results, checking with our LLMD, I decided to look into ozone further and found an NP in Northern CA that does all different kinds of ozone treatments. Initially, he had me breath ozone that was bubbled through olive oil. I have since added ear and rectal insufflation treatments. I do ozone once a week followed by hd IV C a couple days later... my fatigue just melted away in July and has not returned. I am fairly close to symptomless now. It turns out the ozone will help eliminate metals as well which was an issue for me. I could just smell the metals dumping after each treatment.
 
So, right now I am in the process of re-checking heavy metals, viruses, mycoplasma, thyroid and hormones. Inflammation markers are normal and so is my Nagalase. If every thing looks good I will stop the last antibiotic I am on in the next couple of month. I should have most of my results soon. Truly the turning point in my recovery. We are having similar success with my son who had a chronic cough off and on for years... some would call it a TIC but it rapidly went away when ozone was introduced. Perhaps the ozone was getting to areas the antibiotics couldn't reach or the cough was from yeast who knows but it is gone.
 
I highly recommend ozone with an "experienced practitioner". You can herx intensely if you over oxidize the blood cells...... so, slow and steady wins the race. You really need to build up on the type of treatments and dosage. I know they use ozone for joint issues often referred to as 'Limb Bagging' but never discussed that particular therapy with our NP. There are other more intense ozone therapies but I have had such great success with insufflation there is no need to move beyond what I am currently doing. Hydrogen Peroxide is a similar process. Here is good link that explains the oxidation process.
 
http://educate-yourself.org/cancer/benefitsofhydrogenperozide17jul03.shtml

I've been waiting for your update. Nice to see its helping!!!! I am impressed with the improvement in his CD57 and his wanting to exercise and play soccer.
 
My friends son is in the throws of GcMAF shots now (approximately 8 weeks) and it was a rough start as his immune system activated. His numbers were elevated at 1.2 and he is IgG and IgA deficient. They choose to treat Nagalase in advance of IVIG to see if his deficiencies in his IgG/IgA would improve. His CD57 has always been in the 20's. He is slowly feeling better and she will have a better sense on how helpful the shots are at six month mark as well.
 
We tested our entire families Nagalase with only two results back so far. My results were surprisingly normal at .64 Our Dr. had never seen anyone with Chronic Lyme that had normal Nagalase. However, that result goes hand in hand with how I am feeling which is very close to symptomless. My recovery really turned the corner 8 weeks after starting Ozone therapy. Ozone is suppose to be fantastic for obliterating viruses. In two weeks time, I will have my viral and mycoplasma results back and will know for sure if ozone truly helped.
 
Our older son's Nagalase is elevated at 1.3. He is also IgG and IgA deficient. He currently maintains a high level of recovery, still on antibiotics and has moments of just not feeling well along headaches which might be related to chelation. No notable PANS symptoms. We are pursuing the idea of GcMAF for him but are waiting to see if he too can be helped by ozone treatments. I should know more by spring.
 
For your DS cough, a nebulizer along with hydro peroxide mixed with distilled water would help with cough.

I agree with Rowing Mom. Our children had multiple chronic infections and viruses. IVIG helped our older son but six months post his last treatment I could tell it would not provide complete resolution of symptoms that we were hoping for him. He was starting to regress with blood in his stool and why we needed to look beyond just strep as the culprit.
 
We are in our 4th year of treatment (last IVIG treatment was January 2010) and older DS's only remaining symptom is regular headaches and think that has to do with heavy metal chelation. We have found IV nutrients to be as helpful as IVIG and is a lot less expensive. He now gets hd Vitamin C weekly (strong anti-oxidant) and will provide other nutrients via IV. This particular child does have immune deficiencies of both his IgGs and IgAs. We will continue to treat him until heavy metals are resolved and nagalase normalizes. If your child is deficient in amino acids they will have difficulty making IgGs and why these particular immune deficiencies can occur and why we choose to boost him with vitamins/minerals over IVIG. Additionally, it is 'believed' if the Nagalase is elevated the immune system will have a difficult time rectifying itself. Treating his elevated Nagalase with GcMAF is under consideration also over IVIG. However, I have learned never to take any form of treatment off the table and will reconsider IVIG if we can not sustain recovery as hoped.

JuliaFaith will have some great local recommendations that can get your son well.
 
Just an FYI..... we are local to the Bay Area and we now have at least 8 wonderful Dr.'s in our area that treat PANS and understand to look for infections/issues well beyond just strep.
 
Wishing you all the best in your search to get help and son's recovery. Keep the Bay Area in mind but I don't think you'll ever need to move beyond the Settle Area for great help.

I forgot to mention..... When we treated DD aggressively for yeast with nystatin she broke out with Ringworm and a fungal rash. She also had a black tongue at one time indicating fungus as well.
 
I think your DD good response to anti-yeast protocol could indicate yeast or fungus.

I was also thinking her lack of treatment response could be mold related.
 
Here is a link for mold testing.
 
http://www.survivingmold.com/diagnosis/lab-tests
 
The other thing to think about is testing is her Nagalase level. "Nagalase is an enzyme that prevents Vitamin D receptors (VDR) from being activated on the surface of the macrophage. As a result, macrophages are not "activated" and our immune systems are not able to properly respond to invaders". We see one Dr. who believes elevated Nagalase needs to be addressed prior IVIG or the immune system will never be able to rectify itself. It is common for Lyme suffers to have elevated Nagalase.
 
http://www.betterhealthguy.com/gcmaf?highlight=WyJnY21hZiJd

Just my thoughts:
 
If your child has an underlying infection that is actively producing antibodies, IVIG will dilute them, the result being a decrease in symptoms. The infection will continue producing antibodies and, as the effects of the IVIG wear off, will become more concentrated. So you may have been seeing a bit of both a decrease in IVIG concentration in the blood, and an increase of infection-based antibodies, producing symptoms.
 
Die-off toxins often produce symptoms that are worse than those observed before treatment, but as these endotoxins are processed and removed from the body (assuming methylation is working properly), symptoms should wane.
 
http://en.wikipedia.org/wiki/Endotoxin
 
Humans are able to produce antibodies against endotoxins after exposure, but these are, in general, directed at the polysaccharide chain and can only protect against the immunoactivation from serotype-specific bacteria and/or their specific endotoxin. Injection of a small amount of endotoxin in human volunteers has been shown to produce fever, a decrease in blood pressure, and activation of inflammation and coagulation. Endotoxins are in large part responsible for the dramatic clinical manifestations of infections with pathogenic Gram-negative bacteria, such as Neisseria meningitidis, the pathogens that causes meningococcal disease, including meningococcemia, Waterhouse-Friderichsen syndrome, and meningitis.
 
So I guess that if you are dealing with gram negative bacteria (ie. lyme/bartonella), you could be increasing the number of antibodies to the infection because of the endotoxins released with antibiotic use. This would further decrease the concentration of IVIG remaining in his system. Strep is a gram positive bacteria.
 
A head's up - rifampin should not be used alone. There is an increased risk of resistance when it is used as monotherapy.

If you are in Northern CA there are some great LLMDs in the Bay Area. Please feel free to PM for prespective on names treatment styles. Most of them are versed in treating PANS no matter the infectious trigger.

We did very HD (750 billion units or more per day) multi strain probiotics based on the recommendation of our nutritionist for over two years. It did normalize color, regularity and form for all three kids. We worked up to those doses and did not notice any negative responses.

Year over year we have done comprehensive stool analysis and food allergy panel. Here is what we learned: Our children had chronic yeast, some low beneficial bacterial, low absorption, low pancreatic function with allergies to milk, eggs, cheese and casein. One had parasites and one had an opportunistic bacteria that I had never heard of but dangerous if it gets into the blood stream.

After about 2 years of elimination diet they no longer had sensitivities to these particular foods but now showed sensitives to Gluten. I read a very good book along the way called "Enzymes For Autism And Other Neurological Disorders". In the book they make a strong case for using enzymes to break down large proteins verses elimination diet due to the fact you may only chase food allergies to whatever is the predominate source of food. In our case, this was true. When we added a Dr. who specializes in biomedical treatments of autism to our team she recommended we add a stronger dose of protease for low absorption and pancreatic function along with Huston Enzymes to breakdown the large proteins of Gluten/Casein's plus lowered the dose of probiotic to 100 Billion per day. They are no longer on a elimination diet but eat very heathy foods including fermented vegetables and we rotate brands of probiotics.

We are treating the yeast with alternating days of HD nystatin and diflucan along with a few other therapies. In our experience the yeast is a real bear to treat as it has been on ongoing issue since our first stool analysis. It will form its own biofilms, deteriorate the mucus lining in the gut, grow tentacles that attach to the intestinal wall, throw off toxins that will make the intestine more acidic, etc. All this will essentially open the door to other opportunist bacteria and food allergies/sensitivities hence leaky gut. I also understand Bartonella will root itself in the intestinal wall. Some of these bacteria/viruses in the small intestine are thought to produce the nagalase enzyme.
 
"Elevated nagalase has a profound detrimental effect on the immune system. Elevated nagalase is often presumed to be related to microbes of viral origin or cancer. Viruses that are nagalase producers open the door to chronic infections."
 
"Hemagglutinin contains nagalase and is also found in flagella of some bacteria so it could also be the case that some bacteria may produce nagalase".
 
"Several intestinal bacteria are producers of nagalase. Editor's Note: I found this connection to be quite interesting; the gut is big."
 
See more at: http://www.betterhealthguy.com/gcmaf#sthash.t4IuZxZD.dpuf
 
Anyway I've got to run. The reason I mention all of the above is because it is all so interrelated. I can not express enough how valuable to comprehensive stool analysis has been for our family. I now put equal value in the absorption of vitamins/minerals and breakdown of proteins as I do supplementing with probiotics. At a minimum the comprehensive stool will tell you which good bacteria are low so you are supplementing with the proper strains.

If you are in Northern CA there are some great LLMDs in the Bay Area. Please feel free to PM for prespective on names treatment styles. Most of them are versed in treating PANS no matter the infectious trigger.

Another interesting statistic:
 
$100 is spent on research per individual diagnosed with Lyme Disease currently while $80,000 is spent on research for per individual diagnosed with breast cancer.

if dd recovers so quickly, you are extremely lucky, i'd say. for most on this forum, recovery is years long. 90% is a success. recovery requires not only abx but also help with metyhlation and reduction of various inflammations through diet and life-style.

Can I make a suggestion.
 
I am not sure who your LLMD or Lyme treating Dr. is currently but you have one of the best LLMDs in the county in NY. His name is Dr. Richard Horowitz and located in Hype Park, NY. It is common for people with LYME et al to have an inability to sleep. I met one person recently with the same issues..... literally up for weeks on end which is turn caused many psychiatric issues. Dr. Horowitz will know how to help your DD. Please call and explain the situation and see if you can't get in on a cancelation a.s.a.p. I understand an appointment with his NP is just as good if you can not see him immediately.
 
There are others on this board that see him and would be happy to explain how he has helped their children.

Barb,
 
There are some great Dr.'s in the Bay Area. Most of them are integrative and some have expertise in one area or the other but ALL understand PANS/PANDAS/TICS/OCD and are treating successfully. We too were initially referred to Dr. Lowe for movement disorder. We actually never met with him because our son was diagnosed with PANDAS in the interim. 4 year later and he no longer suffers from PANS but is still being treated for his chronic infections et al.
 
Here is the short list:
 
Dr. Lynn Mielke: Developemental Spectrums 'website not working for some reason' Pleasanton
 
Dr. Elisa Song: Whole Child Wellness - Belmont
 
Dr. Chandra: Whole Child Wellness - Belmont
 
Dr. Ray Patel: Redwood City - Located in same office suite as Dr. Harris.
 
Dr. Steven Harris (3 other Dr.'s in practice all integrative - NPs, you see Dr. Harris every other visit) - LLMD
 
Dr. Christina Green - LLMD - Los Altos
 
There are more but I would start with Dr. Lynn Mielke or Dr. Elisa Song (she might be closed to new patients). These particular Dr.'s will do the most extensive testing to investigate all the issues your son may have. If there are multiple chronic infections they both 'sometimes' prefer to work with Dr. Harris as well.
 
Dr. Sunjya Schweig - Petaluma

I would treat immediately if the slightest symptoms resurface and treat every illness entering the household like its bacterial. As you know, any new infection can really bring out the Lyme and start the downward cascade. Ultimately, you want her body to be able to handle the Lyme and so far it seems like she is doing a fairly good job. You might be pleasantly surprised at how well she does long term.
 
I envy your position 'off antibiotics' but I know I'll worry like crazy once we are finally there as well.