GraceUnderPressure

Please post what he says here if you can! His opinion on this would carry more weight than most & I would love to hear an answer to these questions from a knowledgeable PANDAS/PITAND perspective!

Ann, I am relatively new to the world of PANDAS/PITAND - esp. the IVIG aspect of it - so I'm afraid that I could not answer your question from that perspective. My limited understanding at this point is that many kids lose their IgG issues after IVIG which I can only assume is why Dr. K said to go off the restricted diet? But that is something I have read here on this forum, rather than somewhere else for me to refer you, so hopefully someone here can answer that better. As far as the issue of inflammatory foods in general, that is something that I have read in virtually every book dealing with conditions involving immune dysfunction (in addition to my ds18's OCD/Tourette's, I have a ds13 who would be high functioning PDD-NOS if I had him officially diagnosed & 2 of my other kids have minor attention/impulsivity issues - I have been poring over books & internet info for years trying to understand why my kids are having these problems. My ds13 on the autistic spectrum I am now virtually 100% certain was damaged by the mercury exposure from a dental amalgam that I had to have replaced while I was ~5 mos pregant with him. I had a dental amalgam placed just 2 mos before I conceived ds18 so it is reasonable to think that's where his immune system damage came from as well). There is a book called "Nourishing Traditions" that is a wonderful source for understanding why our modern diet is causing so many problems & the critical areas where it differs from traditional diets. For a simple, straight-forward read on this subject, Jack Challem has a book called "The Inflammation Syndrome" that is a little bit dated but still good (some of his articles are at http://www.thenutritionreporter.com/inflamsyndrome/articles.html). And for a thorough but still easy to read coverage of it, Dr. Mark Hyman has a book called "The Ultramind Solution" which you can preview at http://www.ultramind.com/ Eliminating gluten & casein from our diets actually forced us into eating a more varied diet. I was shocked when I discovered an old grocery list a couple of years after we had begun our transition when I realized how much of our former diet was processed & refined carbs in addition to dairy. Now we eat almost all whole foods & way more veggies than we used to! (And yes, eating healthy is expensive. But we used to get sick every other month. If we saved a ton of money at the grocery store buying ramen noodles & mac n' cheez, we'd end up paying it out in medical bills instead. If we ever heal up our IgG food intolerances, I will gladly return them to his diet, but I will still try to stick to a rotating (we're doing a 4 day rotation diet), whole foods diet simply to keep his immune system as optimally healthy as possible.

My ds18 tested high (IgG - ELISA) to gluten, casein, citrus, eggs & soy so we are trying to avoid those things even though he does not react noticeably when he eats them. At one point about a year ago, I threw out the diet in a fit of near despair. I noticed no difference for about 2 wks. Then he got exposed to a cold-type virus &, where his tics used to increase a little (relatively speaking), instead they increased a lot. The literature on this subject suggests that IgG-positive foods are inflammatory. They increase the burden on an already over-burdened, poorly functioning immune system. But also some food proteins tend to be naturally inflammatory - casein, gluten, soy & corn are at the top of that list. Also, sugars, refined carbs, and articificial dyes, flavors & preservatives. Chocolate has substances that both cause & reduce inflammation in it. For people with Tourette's, chocolate, sugar & caffeine are common tic triggers. We are following a diet that is ~95% SCD (see pecanbread.com for more info). It isn't easy, but the farther we get away from sugars & grain carbs, the better we seem to do.

NancyD, I am by no means an expert on mycoplasma testing - I'm in the middle of trying to figure all this stuff out myself as I am waiting to get back test results for my ds7. It's very frustrating (what in this wretched business is not?) As near as I have been able to figure out from digging around online, there is disagreement on what elevated IgG to myco means. It apparently can mean that there was an infection at one time that has passed but the immune system is still activated because of it or there are also those who say that an initial myco infection elevates IgM but that subsequent reinfection only elevates IgG. So those of the former opinion will say abx not necessary; those of the latter opinion will be more inclined to treat. I wouldn't be surprised to run across a 3rd (or more) opinion. It seems that they base its interpretation on what other symptoms the patient is (or is not) having at the time - which, like strep et al, is awkward if you are so unfortunate as to not present with typical sx's. I believe that our family had an earlier exposure to myco p where the initial symptoms improved, but never completely went away - so we've had sort of residual symptoms that come & go according to the strength or weakness of our immune systems. I was thinking maybe ds7 had atypical strep when he first got hit with it back in June, but after reading the sx's of myco p infection, his was a textbook case! This was his 2nd go round with it (unless it was another bug that mirrored its sx's exactly but more mildly?) so I will be doubly interested to see how his testing comes out!

Yeah, like Priscilla wrote, I sometimes feel like my breathing is not bringing in enough air. No compulsions, just feels like I have been breathing too shallowly - as if I had forgotten to breathe deeply enough as odd as that sounds. Then when I try to breathe deeply, if I don't breathe "into the gut" properly, it doesn't cut it - doesn't pull enough oxygen into my lungs to make up for the deficit - & I have to try again. As someone else brought up, in my case, it is most likely because I have thyroid issues.

Thanks for your response, Vickie! My ds7's cough is actually almost completely gone. Meanwhile, my ds18 is ticcing a lot more these last couple of days. I'm actually tinkering with the idea of giving the zithromax to ds18 instead. Is that a good or a bad idea? Esp, if his PANDAS dr wants to do a myco p test on him (assuming he didn't already - he ran so many tests that I'm not even sure what all was done other than Cunningham's) - would that mess up the IgG/IgM test for myco p?

Myco p experts I need help! Multiple questions! I took my ds7 to the family dr. this past Tuesday to get him checked for strep, ASO & mycoplasma p per the advice of ds18's dr's nurse as he began w/sore throat, cough & sinus crud approx. a week & 1/2 ago. Rapid strep negative, ASO normal & they had never done mycoplasma testing before. So they called their lab helpline & were told they needed a particular swab kit which of course they did not have. They told me it would be in either Friday or Monday. It was not in Friday. Looked up myco p & OMGosh! every symptom listed matched what ds7 had when he got really sick w/bronchitis this past June. This time it has been pretty much the same as then, just much, much milder. (DS7 also began experiencing an anxiety that is not at all like him around bedtime during both illnesses - it seems to go away as his symptoms go away) The family dr rx'd zithromax but I haven't started it yet. The dr said his throat & one ear were red, but he appears to be recovering just fine on his own & I was afraid it would mess up the results of the swab test? ***So question #1: Will antibiotics mess up the swab test (which I understand is an attempt to culture the bug)? Plus, the nurse of ds18's PANDAS dr said we should get the blood draw to check IgG & IgM to myco p rather than the swab, BUT the family dr's nurse said she couldn't find such a test listed & needed the lab code to do it. The PANDAS dr's nurse was SUPPOSED to look it up & call me back, but still nothing after 2 phone calls & 3 days. I was thinking maybe I should just bring ds7 with me to ds18's followup appt. which is on the 21st & ask them to do it? Is that too long to wait? ***So question #2: How long after an infection will a swab test still be capable of giving a valid result? ***And question #3: How long after an infection can the blood test still be helpful? ***Finally, question #4: Since my ds7's symptoms seem to be resolving on their own, wouldn't it be better for him if I let his immune system finish taking care of it than to give the antibiotic at this point? (Esp. since he has a little bit of a clostridia overgrowth) Is the myco p more or less likely to dig in & hang around & continue to cause us problems if we don't?

dut, that depends on the child. Physical development & the ability for them to understand the idea to swallow without chewing are major, but their temperament plays a huge part as well. My now 7yo son, who always wants to be doing what everyone else is doing, learned at age 3. My youngest who is now 4 & is much more "his own man" only just learned a few months ago. But my two youngest have always seen the rest of us taking pills so they pretty much took it in stride - I guess one of those "I'm a big kid now!" kind of things, lol! Those sippy cups do seem helpful for teaching them as well because of the way they have to put their mouth when they drink. OTOH, my dd struggled for a long time with it (I did, too, I was still taking chewable multi-vitamins when I was 18!) - she was 10 when we started taking supplements & pretty resistant. But she has always been oppositional & she probably would have been resistant no matter what the age, sigh. (I used to have to pin her down as a toddler to brush her teeth - it was awful. Those of you who have to deal with oppositional-defiance have my complete sympathy!) She's 15 now & can take pills en masse, but if she can avoid them, even if it means sneaking them into the garbage when no one's looking, she will.

dut, are you using a timed release melatonin? The regular helped my ds18 get to sleep, but not to stay asleep, so I switched to the timed release & it worked very well (before his spring exacerbation got so bad that nothing works anymore, that is) ~Grace

I'm going to hazard a guess for their reluctance - we have long been facing the prospect of microbes with increasing antibiotic resistance (many say most likely due to the regular use of it in livestock to fatten them up faster) & it is now reaching the point where we have close to a dozen bugs that we can no longer fight with abx. While I agree that it is scary to think we may be returning to the days when death is not so rare anymore, I look at the h3ll my ds18 is going thru (& that we are enduring with him) & the benefit-risk ratio comes down strongly on his/our side! This ain't livin'.

I finally moved from trying to get a better handle on this whole strep thing to trying to get a better understanding of mycoplasma - ugh, bad, yucky, bad bug. They've known it can cause autoimmunity since the mid '70's? Anyway, those of you who have dealt with this, as well as those of you familiar with herbs, I would like your opinions - they recommend some South American rain forest herbal treatments. What do y'all think? (I'll post the pertinent sections below, but if you click on the title link, it will probably be easier to read at the original site) Mycoplasmas - Stealth Pathogens By Leslie Taylor, ND January, 2001 Mycoplasmas are a specific and unique species of bacteria - the smallest free-living organism known on the planet. The primary differences between mycoplasmas and other bacteria is that bacteria have a solid cell-wall structure and they can grow in the simplest culture media. Mycoplasmas however, do not have a cell wall, and like a tiny jellyfish with a pliable membrane, can take on many different shapes which make them difficult to identify, even under a high powered electron microscope. Mycoplasmas can also be very hard to culture in the laboratory and are often missed as pathogenic causes of diseases for this reason. The accepted name was chosen because Mycoplasmas were observed to have a fungi-like structure (Mycology is the study of fungi - hence "Myco") and it also had a flowing plasma-like structure without a cell wall - hence "plasma". The first strains were isolated from cattle with arthritis and pleuro-pneumonia in 1898 at the Pasteur Institute. The first human strain was isolated in 1932 from an abscessed wound. The first connection between mycoplasmas and rheumatoid diseases was made in 1939 by Drs. Swift and Brown. Unfortunately, mycoplasmas didn't become part of the medical school curriculum until the late 1950's when one specific strain was identified and proven to be the cause of atypical pneumonia, and named Mycoplasma pneumonia. The association between immunodeficiency and autoimmune disorders with mycoplasmas was first reported in the mid 1970s in patients with primary hypogammaglobulinemia (an autoimmune disease) and infection with four species of mycoplasma that had localized in joint tissue. Since that time, scientific testing methodologies have made critical technological progress and along with it, more mycoplasma species have been identified and recorded in animals, humans and even plants. While Mycoplasma pneumonia is certainly not the only species causing disease in humans, it makes for a good example of how this stealth pathogen can move out of it's typical environment and into other parts of the body and begin causing other diseases. While residing in the respiratory tract and lungs, Mycoplasma pneumonia remains an important cause of pneumonia and other airway disorders, such as tracheobronchitis, pharyngitis and asthma. When this stealth pathogen hitches a ride to other parts of the body, it is associated with non-pulmonary manifestations, such as blood, skin, joint, central nervous system, liver, pancreas, and cardiovascular syndromes and disorders. Even as far back as 1983, doctors at Yale noted: "Over the past 20 years the annual number of reports on extrapulmonary symptoms during Mycoplasma (M.) pneumoniae disease has increased. Clinical and epidemiological data indicate that symptoms from the skin and mucous membranes, from the central nervous system, from the heart, and perhaps from other organs as well are not quite uncommon manifestations of M. pneumoniae disease."(15) This single stealth pathogen has been discovered in the urogenital tract of patients suffering from inflammatory pelvic disease, urethritis, and other urinary tract diseases (8) It has been discovered in the heart tissues and fluid of patients suffering from cardititis, pericarditis, tachycardia, hemolytic anemia, and other coronary heart diseases.(9, 10, 14) It has been found in the cerebrospinal fluid of patients with meningitis and encephalitis, seizures, ALS, Alzheimer's and other central nervous system infections, diseases and disorders.(11-13) It has even been found regularly in the bone marrow of children with leukemia.(16- 18) It is amazing that one single tiny bacteria can be the cause of so many seemingly unrelated diseases in humans. But as with all mycoplasma species, the disease is directly related to where the mycoplasma resides in the body and which cells in the body it attaches to or invades. Today, over 100 documented species of mycoplasmas have been recorded to cause various diseases in humans, animals, and plants. Mycoplasma pneumonia as well as at least 7 other mycoplasma species have now been linked as a direct cause or significant co-factor to many chronic diseases including, rheumatoid arthritis, Alzheimer's, multiple sclerosis, fibromyalgia, chronic fatigue, diabetes, Crohn's Disease, ALS, nongonoccal urethritis, asthma, lupus, infertility, AIDS and certain cancers and leukemia, just to name a few.(1-6) In 1997, the National Center for Infectious Diseases, Centers for Disease Control and Prevention's journal, Emerging Infectious Diseases, published the article, Mycoplasmas: Sophisticated, Reemerging, and Burdened by Their Notoriety, by Drs. Baseman and Tully who stated: "Nonetheless, mycoplasmas by themselves can cause acute and chronic diseases at multiple sites with wide-ranging complications and have been implicated as cofactors in disease. Recently, mycoplasmas have been linked as a cofactor to AIDS pathogenesis and to malignant transformation, chromosomal aberrations, the Gulf War Syndrome, and other unexplained and complex illnesses, including chronic fatigue syndrome, Crohn's disease, and various arthritides." Mycoplasmas, unlike viruses, can grow in tissue fluids (blood, joint, heart, chest and spinal fluids) and can grow inside any living tissue cell without killing the cells, as most normal bacteria and viruses will do. Mycoplasmas are frequently found in the oral and genito-urinary tracts of normal healthy people and are found to infect females four times more often than males, which just happens to be the same incidence rate in rheumatoid arthritis, fibromyalgia, Chronic Fatigue and other related disorders.(7) Mycoplasmas are parasitic in nature and can attach to specific cells without killing the cells and thus their infection process and progress can go undetected. In some people the attachment of mycoplasmas to the host cell acts like a living thorn; a persistent foreign substance, causing the host's immune defense mechanism to wage war. This allergic type of inflammation often results in heated, swollen, and painful inflamed tissues, like those found in rheumatoid diseases, fibromyalgia and many other autoimmune disorders like lupus and MS, Crohn's and others. In such cases the immune system begins attacking itself and/or seemingly healthy cells. Some species of mycoplasmas also have the unique ability to completely evade the immune system. Once they attach to a host cell in the body, their unique plasma and protein coating can then mimic the cell wall of the host cell and the immune system cannot differentiate the mycoplasma from the body's own host cell. Mycoplasmas are parasitic in nature because they rely on the nutrients found in host cells including cholesterol, amino acids, fatty acids and even DNA. They especially thrive in cholesterol rich and arginine-rich environments. Mycoplasmas can generally be found in the mucous membrane in the respiratory tract. They need cholesterol for membrane function and growth, and there is an abundance of cholesterol in the bronchial tubes of the respiratory tract. Once attached to a host cell, they then begin competing for nutrients inside the host cells. As nutrients are depleted, then these host cells can begin to malfunction, or even change normal functioning of the cell, causing a chain reaction with other cells (especially within the immune and endocrine systems). Mycoplasmas can even cause RNA and DNA mutation of the host cells and have been linked to certain cancers for this reason. Mycoplasmas can also invade and live inside host cells which evade the immune system, especially white blood cells. Once inside a white blood cell, mycoplasmas can travel throughout the body and even cross the blood/brain barrier, and into the central nervous system and spinal fluid. FOOTNOTES Baseman, Joel, et.al., Mycoplasmas: Sophisticated, Reemerging, and Burdened by Their Notoriety, CDC, Journal of Infectious Diseases, Vol 3, No.1, Feb 1997 S-C. Mycoplasmas and AIDS. In: Maniloff J, McElhaney RN, Finch LR, Baseman JB, editors. Mycoplasmas: molecular biology and pathogenesis. Washington (DC): American Society for Microbiology, 1992:525-45. Nicolson G, Nicolson NL. Diagnosis and treatment of mycoplasmal infections in Gulf War illness-CFIDS patients. Intl J Occup Med Immunol Toxicol 1996;5:69-78. Wear DJ, et.al. Mycoplasmas and oncogenesis:persistent infection and multistage malignant transformation. Proc Natl Acad Sci USA 1995;92:10197-201. Ekbom A, Daszak P, Kraaz W, Wakefield AJ. Crohn's disease after in-utero measles virus exposure. Lancet 1996;348:516-7. Taylor-Robinson D. Mycoplasmas in rheumatoid arthritis and other human arthritides. J Clin Pathol 1996;49:781-2. Dr.Harold Clark, The Intercessor, June 1993, The Road Back Foundation, Delaware OH. Goulet M, et.al., Isolation of Mycoplasma pneumoniae from the human urogenital tract. J Clin Microbiol 1995;33:2823-5 Daxbock F, et.al., Severe hemolytic anemia and excessive leukocytosis masking mycoplasma pneumonia. Ann Hematol. 2001 Mar;80(3):180-2. Higuchi ML, et.al., Detection of Mycoplasma pneumoniae and Chlamydia pneumoniae in ruptured atherosclerotic plaques. Braz J Med Biol Res. 2000 Sep;33(9):1023-6. Socan M, Neurological symptoms in patients whose cerebrospinal fluid is culture- and/or polymerase chain reaction-positive for Mycoplasma pneumoniae. Clin Infect Dis. 2001 Jan 15;32(2):E31-5. Bencina D, et.al., Intrathecal synthesis of specific antibodies in patients with invasion of the central nervous system by Mycoplasma pneumoniae. Eur J Clin Microbiol Infect Dis. 2000 Jul;19(7):521-30 Smith R, et.al., Neurologic manifestations of Mycoplasma pneumoniae infections: diverse spectrum of diseases. A report of six cases and review of the literature. Clin Pediatr (Phila). 2000 Apr;39(4):195-201. Umemoto M, Advanced atrioventricular block associated with atrial tachycardia caused by Mycoplasma pneumoniae infection. Acta Paediatr Jpn. 1995 Aug;37(4):518-20. Lind K. Manifestations and complications of Mycoplasma pneumoniae disease: a review.Yale J Biol Med. 1983 Sep-Dec;56(5-6):461-8. Alexander FE. Is Mycoplasma Pneumonia associated with childhood acute lymphoblastic leukemia? Cancer Causes Control. 1997 Sep;8(5):803-11. Hall JE, Mycoplasma pneumonia in acute childhood leukemia. Pediatr Pulmonol. 1985 Nov-Dec;1(6):333-6. Murphy WH, Gullis C, Dabich L, Heyn R, Zarafonetis CJD. Isolation of Mycoplasma from leukemic and nonleukemia patients. J Nat Cancer Inst 1970;45:243-51. Treatment Options For Mycoplasmal Infections The negative impact of a mycoplasmal infection on the human immune system is undisputed. Due to it's ability to either activate or suppress the immune system, it is now being considered one of the culprits of many autoimmune diseases. Yet, scientists still argue over the "chicken or egg first" type of sequence of events. Do the mycoplasmas begin growing and replicating first and then weaken or deregulate the immune system? Or does a weakened immune system (caused by stress, poor diet or other illness) allow the mycoplasmas to take hold and begin their opportunistic growth resulting in chronic disease and to weaken and deregulate the immune system even further? The answer is probably both, and it becomes one of the most critical treatment aspects of mycoplasmal infections. In immunodeficient patients it can be very difficult to treat these mycoplasma infections with appropriate broad spectrum antibiotics which are immunosuppressive themselves. Although the tetracycline and erythromycin types of antibiotics are effective for some mycoplasmal infections, M. fermentans, M. hominis and M. pirum strains are usually resistant to erythromycin, and tetracycline-resistant strains of M. hominis and U. urealyticum have been reported. However, these antibiotics have a very limited ability to directly kill these mycoplasmas, and their efficacy eventually depends on an intact host immune system to eliminate the mycoplasmas. These types of protein inhibiting antibiotics will stop the protein adhesion of the mycoplasma to host cells but won't directly kill the mycoplasma itself. With an already weaken immune system, many patients lack the ability to mount a strong antibody response against these deadly stealth pathogens to kill them effectively. Regardless, many physicians and rheumatologists are treating their arthritis, CFISD, fibromyalgia and other mycoplasma infections with long term antibiotic therapy. One of the more popular conventional protocols involves rotating multiple 6 week cycles of Minocycline or Doxycycline (200-300 mg/day), Ciprofloxacin (1,500 mg/day), Azithromycin (250-500 mg/day, and/or Clarithromycin (750-1,000 mg/day) among others.(1) Sometimes the side effects of these strong antibiotics can be as bad as the symptoms of the diseases they are treating since a minimum of 6 months and up to two years of antibiotic therapy may be required. Many doctors now believe that antibiotics should not be used solely or exclusively to treat mycoplasmal infections, without addressing rebuilding the immune system which is imperative for a complete recovery and eradication of infection. Others are using more natural antibiotics found in plants which can be as effective or more effective with fewer side effects or negative impact on the body. These include olive leaf extract products, urva ursi, and Neem leaf or seed extracts. Also see Raintree's Myco herbal formula. One of the main side effects of antibiotics, whether it is a natural plant antibiotic or a chemical antibiotic, is the loss of friendly bacteria that is needed in the gastrointestinal system for proper digestion and elimination. No antibiotic can differentiate a friendly bacteria from a harmful one. Therefore, any time an antibiotic must be taken, especially long term, taking a probiotic formula to replace friendly bacteria is indicated and helpful in avoiding side effects like candida and fungi overgrowth which can cause digestive and elimination difficulties and other side effects. Several probiotic products are widely available over-the-counter which combine these friendly bacteria - live cultures of Lactobacillus acidophilous, Lactobacillus bifidus and other bacteria with FOS (fructoologosaccharides) to promote growth in the gastrointestinal system. It's important to take this type of supplement when taking antibiotics of any kind and best to be taken either 3-4 hours prior to, or after taking the antibiotic dosage. Full live-cultured yogurt contains acidophilous and is a good food source for these friendly bacteria. Also see Raintree's Amazon A-F. Another common side effect when taking antibiotics is called a Herxheimer Reaction. This occurs from the organism die-off and generally is the first indication that the antibiotic therapy is working. Symptoms that are associated with a Herxheimer include: chills, fever, night sweats, muscle aches, joint pains, lymphatic pain, mental fog, and extreme fatigue. Depending on the severity of the infection and resulting die-off, these symptoms can last 1-2 weeks and sometimes longer and can vary in intensity. Drinking at least two quarts of filtered or distilled water every day to flush the organisms from the body is helpful in reducing the length and severity of a Herxheimer reaction. Another natural remedy to reduce Herxheimer reactions and thought to be helpful in helping the lymph glands to filter and remove dying organisms is a Whole Lemon-Olive Oil Drink. To prepare this natural remedy, place one whole unpeeled lemon (washed) in a blender with 1 cup of juice or water and 1 tablespoon of extra virgin olive oil. Blend in blender until smooth, then pour through a wire strainer. Discard pulp and drink liquid. Once the mycoplasmas are being controlled by some form of effective natural or chemical antibiotic, re-nourishing and replacing the nutrients drained from the infected host cells can help speed recovery and reduce symptoms. A general multi-vitamin supplement plus extra C, D, E, CoQ-10, beta-carotene, quercetin, folic acid, bioflavoids and biotin are necessary and helpful when recovering from a mycoplasmal infection. Supplementing back the depleted amino acids has been reported to be helpful in some recovering from these infections. These include L-cysteine, L-tyrosine, L-glutamine, L-carnitine, and malic acid. Remember, however, that mycoplasmas thrive on arginine! Avoid L-arginine supplements and multi-amino acid formulas containing L-arginine, as well as foods rich in arginine to avoid feeding the mycoplasmas. The richest food sources of arginine (to avoid) are nuts and seeds, including the oils derived from seeds and nuts which should be eliminated or drastically reduced in the diet. Vitamins A, C and E, and other antioxidants found in natural plants, have also been reported to help speed recovery and to minimize the oxidative stress caused by mycoplasmas. One of the most popular antioxidants sold today are various extracts of grape seeds. Remember however, most seeds are rich in arginine, including grape seeds, and should generally be avoided. Other helpful supplements to replenish drained nutrients from parasitic mycoplasmas are generally indicated based upon which specific cells the mycoplasma might be feeding on and which nutrients are being depleted. Specifically with fibromyalgia patients, leading research indicates that many of the hormones and enzymes produced in the neuroendocrine system and Hypothalamus-Pituitary-Adrenal Axis are depleted or malfunctioning which have the ability to cause many of the symptoms found in these patients. Finally and most importantly is nutritionally supporting the immune system. There are various natural products sold today which can stimulate and support immune function. There are many natural products available in the market place today which nutritionally support immune function. One of the best from the rainforest is cat's claw. Also see Raintree's Immune Support. Another important consideration is the elimination of drugs that might suppress immunity. Dr. Garth Nicolson, one of the world renown experts on mycoplasmas states: "We have recommended that patients be taken off antidepressants and other potentially immune-suppressing drugs. Some of these drugs are used to help alleviate certain signs and symptoms, but in our opinion they can interfere with therapy, and they should be gradually reduced or eliminated."(1) This of course would be indicated for many fibromyalgia and Chronic Fatigue patients who are routinely prescribed antidepressants. FOOTNOTES Nicolson, et.al., Diagnosis and Integrative Treatment of Intracellular Bacterial Infections in Chronic Fatigue and Fibromyalgia Syndromes, Gulf War Illness, Rheumatoid Arthritis and Other Chronic Illnesses. Clinical Practice of Alternative Medicine 2000; 1(2) 42-102

I finally called Dr. R's office yesterday & asked his nurse if I should take my ds7 to get tested for strep & myco p to help us figure out ds18's issues as well as ds7's. She said yes - have them do a rapid strep, ASO & myco p. So I took him this morning & the family dr said no problem to the tests. Rapid strep was negative. They took blood for the ASO. But they've never done myco so they called some lab test consultant who told them they needed a nasopharyngeal kit that they did not have. So they apologized & asked me to bring him back Friday. Now I'm looking at myco p testing & see that there is the swab test to check for immediate infxn, but also one for IgG/IgM testing by blood draw. Which one is the norm? Or more importantly, I suppose, the ideal? DS7 has an active infxn of something right now that seems to be the same thing he had back in June & his anxiety issues are coming back with it. I'll call the nurse in the AM to check, but I'm so desperate to figure out what is going on that I'm considering trying to get both tests at this point!! Can y'all share any info with me so I can get educated fast on this? ~Grace

Frankly I'm not sure of all the labs Dr. R ordered when we went to see him a couple of weeks ago - there were so many. He also gave us a porphyrin lab from Laboratoire Philippe Auguste to complete when we got home from our vacation. I am looking at the options available from the French lab, & in addition to porphyrins, it also offers options for: Pterins (neopterin + biopterin - immuno-inflammation) 80 HdG and 80 HG (DNA + RNA Oxidative damage) F2-a-Isoprostane (Membrane Oxidative Damage) Then it also offers: Thiols (Cys, Hcys, Cys-Gly, GSH) Urinary Mercury Cryptopyrrole Aminolevulinic acid [biomarker for lead] I know Dr. R just wanted us to do the porphyrins, but I am wondering if we should fork out for some of these others as well? Just as a recap, my ds18 has OCD-based Tourette's that has been increasing in severity every time something triggers his immune system into action. We definitely did Dr. Cunningham's tests, in addition to a test from NeuroScience to check his neurotransmitter levels, & another from GenovaDiagnostics to check his metabolic analysis profile & cellular energy profile.

Hi all! We are back from our vacation that began with a visit to Dr. Rao in Plano. Dr. R pointed out to me that the dr. we saw back in 2008 actually tested ds18 for Antistreptolysin O Ab (5.4 IU/mL) and Anti-DNase B Strep antibodies (<1:60) and the results appeared solidly negative even as my ds was getting worse. So Dr. R does not think ds18's problem originates as a PANDAS case - though he did go ahead & test to see if ds18 has developed it in the 2 yrs since then. (We did Dr. Cunningham's tests among several other things - hopefully that will reveal if ds18 is a PITAND case) Meanwhile, last Tuesday night when we were still on our vacation, my ds7 complained of a sore throat - the next morning he woke up with that bronchitic-type cough similar to what he had back in June that seemed to affect ds18 and make his tics worse. But then pretty much all illnesses seem to make ds 18's tics worse. Anyway, ds7 is still coughing a bit & has a stuffy nose - which ds4 has just started (the runny nose not the cough) - should I try to get my 7yo tested for anything? (He is getting anxious thoughts again just when that had seemed to be subsiding from the last bout) If so, which tests should I ask for (since this is just a basic family practice doctor who frankly isn't even that good) - strep & mycoplasma? Or should I just give my kids whatever health support I can with things like olive leaf extract & elderberry and wait till next month's followup with Dr. R to see what, if anything, the labs reveal?

We're finally packing up to leave for Dallas! DS18 is ticcing so bad now that it takes him 2-3 hrs to eat his dinner & he doesn't make it to bed till 2:30+ am - it's like he's stuck in some kind of nearly endless loop of tics. Thank goodness the dr moved our appt up to Thurs am or I don't know how we could have endured this for another couple of weeks! DS18's diarrhea cleared up within roughly 24hrs after D/C'ing the augmentin, but he was actually a little bit more messed up after it was out of his system. Don't know if that's a sign that we were on the right track, but DH was right that we couldn't do all that driving with our son having an unpredictable upset stomach. Is it possible that they might be able to give him an injection of augmentin? That would last longer (though not sure how long) & avoid the havoc to the gut. And to those of you who are so inclined - please pray for us! Our ds is so close to not being able to function at all that I don't know what we will do if this dr. can't help us. I will continue to remember you all in our prayers, as well!

My ds is sensitive to sounds which can often be triggers for him - particularly voices in the higher pitched range. Something that made me go "hmmm": I read an article a short while back that mentioned that listening to music increases dopamine. My ds has never been overly interested in music (which seemed odd to me because I love music & tend to have it on more often than not), but recently as his tics have increased in severity, he has begun humming & whistling fairly frequently. I have wondered if they are actually tics or if his body is trying to compensate for whatever is making his dopamine delivery so erratic. My ds also tends to have increased tics from video games, but that mainly seems to be a result of the stimulated tensions & excitement from playing. I do not see the same effect when he plays puzzle games that have no stressors (like time limits or what have you). Also since his tics have increased in severity recently, things that use sustained concentration & focus for any significant length of time make things worse as well.

Also, if your child has multiple allergies or sensitivites, only eliminating dairy may not be enough to be able to see a difference. My ds is intolerant to dairy, wheat, citrus, egg, corn & soy (& candida!). We found those thru ELISA testing by our DAN doctor, but there are probably more. At this point, I can see that he tics more when he eats those foods, but eliminating them has not been enough to eliminate his tics. So unfortunately, if your child has several or many triggers, it is a little bit more difficult. BTW, can anyone tell me what shampoo they are using? We are trying to find one with a price tag we can live with, that still cleans our hair well, & it has not been easy! I just spent $10 on a bottle of Everday Shea that was on sale at Whole Foods, & it leaves my ds's hair looking greasy. Now we will have to use it as a liquid soap instead.

I guess it's all moot now! DH said stop the augmentin! we have to get ds's gut calmed down before we leave in 4 days so that we aren't on the road trying to deal with a kid with the big D. I'm loading him up with probiotics now - I hope that also will help minimize the risk of resistance developing. Dr. Rao very kindly is allowing us to bring ds18 in on Sept. 9th (instead of waiting till the 24th) since ds is in such bad shape so that he can get all the tests done & then he said he would consult with us by phone so that we would not have to drive back. I haven't met the man yet but I think I love him!

What is recommended for preventing future attacks? Anything besides prophylactic abx?

Yes, this is a concern for me. Two of my other kids have had some problems with c-diff overgrowth & they are all so careless hygeine-wise that I wouldn't be at all surprised if the rest have picked it up including the 18yo - so that could be what is going on here even with the 2 sacc. b. capsules at bedtime. We started the augmentin Monday evening. Would it be wise to discontinue it? Does zithromax have as much risk of c-diff overgrowth as augmentin? We don't see a dr. who can help with any of this until Sept 24th. And just to add to our anxieties, we are supposed to be leaving on vacation Sept 9th.

Thanks, your response & the others below it are what I am hoping remains open to us even if the reduction in inflammation does not eliminate ds's "habits". At this point, the flare has been so bad for so long (~6mos now) that my poor guy says he can't even anticipate half of them anymore. He's not a good candidate for CBT/ERP right now for that reason if what I have read is accurate (& it does make sense). Perhaps if we can eliminate the inflammation, he WILL then be able to get rid of the "habits" with therapy. Additionally, every person is different - so some heal better than others, etc. I just won't know till I know, ya know?

On one of Dr. Susan Schulman's PANDAS videos, she mentions that we do not know if there is brain damage to those who have experienced longterm inflammation. From what she said, I got the impression that the current thinking is that after 10 yrs there may well be some permanent damage. (My ds has had his problems for at least 14 yrs so you can understand how that has stayed with me) Since it's still something that has been unexplored at this point, whatever we hear or read is going to be someone's opinion. But I would expect those opinions are most likely based on what is known (or believed to be known) about the brain & other inflammatory conditions.

Not enough fluids is definitely a factor for us - ds18 has so many tics around drinking that he avoids it until the thirst drives him to it. I have explained to him how that affects his body & all, but he is so messed up right now that I really believe that he is doing the best he can for the most part. Any idea why the dr. said to stop the augmentin when he thought diarrhea was an issue? I am giving my ds my own Rx for augmentin - he doesn't have a dr. yet so I don't really have someone to consult. He did say that it seemed a little less bad last nite after dinner so I am hoping it is like the literature says where the body is adjusting to it. I'll have to gauge how it goes today. Whenever my ds has constipation, upping his vitamin C &/or magnesium (but not both at the same time) seems to do the trick. (His has never been really bad, though, so YMMV) ~Grace

Oh thanks be to God that our insurance just switched from Aetna to United Healthcare this past June! A ray of sunshine in my day at last!

Okay, I'm going to try moving the probiotic dose closer - like maybe 1/2-1 hr after the augmentin & then add some culterelle or similar inbetween times. Thanks for all the responses! Edit: Ds18 says that he is now having rather uncomfortable stomach cramping. I still have a full course of zithromycin that I was supposed to be giving to one of my younger sons. Would it be worthwhile to switch ds18 from augmentin over to zithromax at this point?