concerned lady

Trying again to help this young man in Brooklyn: ____________________________________________________ I suspect possible PANDAS or PANDAS-like condition in a young adult (in low 30's) who has had definite strep infections, possible Lyme Disease, possible Mycobacterium avium (or other bird infections), possible viral infections, etc. He is nice, but poor, lives in Brooklyn but can take subway to Manhattan. Has no car. His insurance is Amerigroup (crappy, but it's all he has). He tried to see Dr. Najjar, but the patient's insurance wouldn't allow it. And, Dr. Najjar won't take the patient on, as a charity case. Can anyone recommend a good PANDAS & LYME literate doc somewhere in NEW YORK CITY (Brooklyn or Manhattan) who DOES take poor patients' insurance &/or who takes on charity cases? Thanks in advance. Carol Sidofsky (former nurse/RN, former VCD/vocal cord dysfunction patient) cell: 970-531-5000 email: fsds@rkymtnhi.com

I suspect possible PANDAS or PANDAS-like condition in a young adult (in low 30's) who has had definite strep infections, possible Lyme Disease, possible Mycobacterium avium (or other bird infections), possible viral infections, etc. He is nice, but poor, lives in Brooklyn but can take subway to Manhattan. Has no car. His insurance is Amerigroup (crappy, but it's all he has). He tried to see Dr. Najjar, but the patient's insurance wouldn't allow it. And, Dr. Najjar won't take the patient on, as a charity case. Can anyone recommend a good PANDAS & LYME literate doc somewhere in NEW YORK CITY (Brooklyn or Manhattan) who DOES take poor patients' insurance &/or who takes on charity cases? Thanks in advance. Carol Sidofsky (former nurse/RN, former VCD/vocal cord dysfunction patient) cell: 970-531-5000 email: fsds@rkymtnhi.com website: Can't Breathe? Suspect Vocal Cord Dysfunction!

Dear Family of 5, Thank you for your reply and suggestion. ---------------------------- Dear Chemar, Thank you for your advice. I did call Dr. Murphy's office earlier on Tuesday, and the secretary checked with Dr. Murphy, and said that she (Tanya Murphy) only treats patients up to 18 years old, and that Dr. Murphy doesn't know any docs who treat adults. The secretary said that Dr. Murphy recommended that "the patient" could contact the Infectious Disease Department at the Univerisity of South Florida, at 813-972-2000, to see if strep etc. are problems for the patient. I emailed this advice to the patient. Sincerely, Carol (concerned lady)

Dear Michael/Tampa, I got your PM and thank you. I replied to you, in a PM. Sincerely, Carol

Thank you for replying. I'm hoping some Floridians on this forum can recommend some good doctors' names & phone numbers that I can share with this unfortunate and desperate patient! Carol (concerned lady)in Colorado cell: 970-531-5000 fsds@rkymtnhi.com

I was contacted by a young man, 33 years old, in Ft. Myers, Florida, over the weekend. He had been told 3 years ago, that he had VCD (Vocal Cord Dysfunction), which is basically intermittent laryngospasms. While asking him many questions, he said that he had had A SEVERE STREP THROAT INFECTION, about 5 years ago, with a re-occurance of the severe strep throat infection. This made me suspect he may have PANDAS or a PANDAS-like illness. He has several more health problems, and needs a really good PANDAS-knowledgable doctor, as close to Ft. Myers as possible, who can be a "team leader" in helping him to sort through all his health issues. When born, he had excess material of some kind, in his inner ear (right ear), and had to have 2 operations later on, to remove this material (at ages 8 & 19), and the operations left him with a vertigo-like condition causing him to see things moving when things are not moving, and causing the ground to sometimes appear to move in waves (when there's no earthquake happening). He said this problem was a "place & space" problem. He told me that his eyes were trying to compensate for his ear problems. He has visual migraines. He also has some kind of NECK PROBLEM(S), THAT INTERFERE WITH HIM FALLING ASLEEP. He used to be a professional drummer and singer, and like some other professional entertainers, abused alcohol (not any more), didn't get enough sleep, and didn't eat well. He is trying to do better (eats better), but is almost incapacitated by the "vertigo"-like problems (inner ear problems), and may have a SLEEP DISORDER too. From sleep deprivation, he has "hallucinations", anxiety, stress, etc. He falls, and has to be helped to stand up again. He also may have accidentally caused some nerve damage, by taking too much Vitamin B 6, until a year ago (not taking it anymore). This is a desperate patient, who said he is almost at the breaking point, who needs a good doctor to act as a team leader, to address all his health problems, and who can find specialists to help him. He was told (age 14), that he had a dysfunctional gall bladder along with a "frayed diaphragm". He was supposed to be getting thyroid gland testing yesterday, prescribed by a neurologist. I suspect he has some Obsessive Compulsive Disorder (OCD) symptoms, but it's hard to tell, because of his multi-factorial ailments plus sleep deprivation symptoms. I recommended also avoiding gluten and milk proteins, which in "gluten-sensitive" & milk protein-sensitive people, can make PANDAS symptoms worse. WHO ARE DOCTORS WHO TREAT ADULTS, WHO MAY HAVE PANDAS-LIKE ILLNESSES, AS CLOSE TO FT. MYERS, FLORIDA, AS POSSIBLE? Thanks in advance. Carol (concerned lady) cell: 970-531-5000 fsds@rkymtnhi.com

Everything you all wrote, plus Dr. T's statements, are so helpful, and worth looking at very closely, and digging into more deeply, and will help me to learn more. Thanks for that. In addition to looking for, finding, and treating the several infectious organisms (strep, mycoplasmas, lyme disease, other organisms like viruses, etc., etc.): I think it may also be helpful for Dr. T. to find out which girls and boy had been vaccinated with WHAT VACCINES, AND WHEN. (Gardasil, flu shot, other vaccinations) If more boys get the Gardasil shot, I wonder if more boys will be getting tic disorders, etc. Also, SOFTBALL FIELDS (seems to be one factor that many apprear to have in common) are sometimes built on or near OLD TOXIC DUMPS, so I'm glad Erin Brockovich's team is still looking into the Le Roy area's toxic FRACKING CHEMICALS (many are neuro-toxic) used in natural gas wells, plus the old 1970's train derailment SPILL of toxic NERVE POISONS, fairly close to the school. I hope Erin's team can get samples from soil, water, and air, right at the school, and near the Le Roy school. I hope Erin's team goes to Corinth, too, in case of similar (parallel) environmental concerns there, similar to Le Roy. Lou Gehrig, I think, from what I've read, played baseball for years, on a field that was on top of an old toxic dump, and he got ALS/Amyotropic Lateral Sclerosis, named Lou Gehrig's Disease after him. Illegal dumping of toxics into streams is also possible (saves companies money). The previous HURRICANE caused FLOODING, that may have brought toxic stuff up to the surface, more quickly, more recently. Carol

Hi Carol< Below is an message I got from a Mom who has a PANDAS kid. Hope this helps. * Hi Tiffani, You mentioned that you would like to know about doctors who might be willing to come to Mass to discus PANDAS. I spoke to Ruby's pediatrician Dr. Susan Schulman. She would like to do anything to help spread the word to other docs. You can reach her at susankschulmanmd@gmail.com She is a very lovely and caring woman who has a very interesting story to tell about all the PANDAS kids she see's in her practice. She was interviewed for the Parents magazine article about PANDAS. You can tell her that you got her name from Ruby's mom. Sherri Thank you, Tiffani for your messages (got the email one first)! I sent an email to Dr. Susan Schulman, and hope she has a recommendation for me. I haven't yet been able to get to Dr. Najjar at NYU Langone, as LaurenK suggested. (Dr. N's secretary is often away from the phone, so I'll have to call back & leave a message). If the young man weren't poor, and had a car, and had someone to drive him since he's sick, I would have recommended he see Dr. Schulman. He is able to use the subway system. Carol (cell) 970-531-5000 fsds@rkymtnhi.com

Thank you! I will call Dr. N. today. Yes, the young man (previously gainfully employed) was tested for HIV, and was negative. He was tested for HIV, because of his weight loss over the last couple of years, weakness, and I think that testing was a routine thing they test for when they don't know what's happening with a young man. The birds were pets of his and his mother, since he was a teenager, when they started out with just 2 (a male & female parakeet). His mom was a single mom, originally coming from a European country, and she came from a somewhat dysfunctional family, and as a result, she has obsessional behavior, too (hoards clothing, easily is stressed, etc.). Being a single mom years ago, she got what she could, for an apartment, and their place was not the best. All the birds were finally given away (recently), and the son moved out into another apartment that the mom owns, that is hopefully in better shape. Sincerely, Carol

I need your recommendations for a PANDAS/PITANDS/PANS & LYME literate doc for a young man (late 20's) who lives in Brooklyn, NY. He has eye tics ("twitches"), is somewhat obsessional/compulsive, and until recently, owned more than 30 pet parakeets all at one time, for many years, which birds may have transmitted 1 or more "bugs" to him (bacterial, etc.). The apartment he was in, (he's out of that one now) also had rats and various insects, including bedbugs, centipedes, and various little bugs he saw in the parakeets' food areas. He is poor, has no car, is too sick to work, and gets food brought to him by his mom. He is able to travel by subway to Manhattan. He does have some kind of health insurance, and being poor, he needs to see a doctor who takes insurance. The doctors he has seen so far, have not been able to fully diagnose him. I suspect Mycoplasma avium (from the birds), (he's being tested for this, via sputum samples being cultured) and maybe Lyme Disease (which can be transmitted by tiny ticks even from birds!). He has red marks (possible tiny bite marks) on both the front and back of him. He feels a crawling sensation at times on his skin. He worries about possible parasites. A while back, he felt better just when on a "prev pack" (minus the acid blocker). But, he felt sicker after he was done with those antibiotics, so I suspect he still has some kind of infection or more than one infection. Can anyone recommend a PANDAS & LYME literate doctor in BROOKLYN &/OR IN MANHATTAN, who can help to diagnose and treat this nice young man? His platelet count is somewhat below normal, and he lost some hair, has lost weight, and is motivated to get diagnosed and get better. He has been tested for AIDS (which can infect heterosexual patients too, which he is), and he's thankfully negative for AIDS. Thanks in advance for any doctor recommendations. Carol 970-531-5000 fsds@rkymtnhi.com

I remembered how taking (eating) a yeast product can cause foot &/or leg cramps! Yeasts are rich in phosphorus, and (like meat, also rich in phosphorus), eating a lot of phosphorus can tend to drive out some calcium, resulting in a calcium deficiency, leading to foot or leg cramps! I eat some tahini (sesame seeds crushed into a paste that looks like peanut butter), like a tablespoonful, every day, and no more foot/leg cramps, that I did get, when I first started taking Saccharomyces boulardii! The tahini (organic is best) can be mixed into soups, made into a smoothie (milk-free if a person is milk protein-sensitive), or put into a sandwich on gluten-free bread (if a person is sensitive to gluten, a protein that is in wheat, rye, barley, etc.). Sincerely, Carol (cell) 970-531-5000 fsds@rkymtnhi.com

It's great that you're giving him a probiotic (?bacterial one, such as Acidophilus, bifidus, etc.?) There's another kind of very helpful probiotic (beneficial, friendly organism) that is a friendly YEAST(NOT related to Candida albicans). This "probiotic" (friendly) yeast is called Saccharomyces boulardii, pronounced "sack-uh-row-my-seas-boo-lard-ee". It is abbreviated as S. boulardii. The less expensive (still effective) version of S. boulardii, is sold by Jarrow (health food store brand). I use it myself, daily, to prevent Clostridium difficile infection that is all too commonly caused by antibiotics. Clostridium difficile is abbreviated C. diff, and is a dreadful intestinal infection, often brought on by taking antibiotics. A more expensive version of S. boulardii, (very effective) is a freeze dried version (do NOT refrigerate this one--keep at room temperature), and this one is sold (over the counter) by pharmacies, and this version is called "Florastor" (made by a French pharmaceutical company called Biocodex). Florastor is a "pun" on restoring one's "flora" in the large intestine. This friendly yeast puts out a protein that inactivates the toxin made by C. diff, which toxin tries to dissolve the large intestine (gut/colon) walls, to provide a food source for these bad bacteria, the C. diff. And, the S. boulardii also promotes the re-growth of "bacterioides", which are beneficial bacteria of many species, normally found in stools, before antibiotics destroy most of these "bacterioides". I was told some years ago, by a wonderful phD researcher, Lynn McFarland, who works or worked for the manufacturer of Florastor (BioCodex), to take 2 capsules in the morning, and 2 capusles in the evening, each time with a glassful of non-chlorinated water (not too cold). Each capsule (check the label) contains 5 billion "cells" of the friendly yeast, S. boulardii. Florastor calls each capsule 250 mg. (and Lynn said each Florastor capsule does contain 5 billion cells), whereas the Jarrow brand says 5 billion cells are in each capsule. Both brands have equal amounts (cell count) of the S. boulardii in each capsule. I weigh about 150 pounds, so check with your son's doctors, to see how much less he should take, depending on his age and weight,-- that is, if you and his doctor are OK with his taking this probiotic yeast (S. boulardii). S. boulardii CAN be taken at the same time as antibiotics, but the probiotic bacteria such as acidophilus, bifidus, etc., should NOT be taken at the same time as antibiotics. With the bacterial probiotics (Acidophilus, etc.), take that at least a couple of hours apart from taking antibiotics. If your son happens to have a lactose (milk sugar) intolerance, and if your probiotic has milk in its formulation, you could have your son take a "Lactaid" (brand name of lactase enzyme) along with the probiotic, to "digest" (break down into smaller molecules) the lactose (milk sugar)that is in the milk. This prevents stomach (intestinal actually) upset from lactose intolerance. If your son is either allergic to yeast proteins, or if he is "sensitive" to yeast proteins, then don't give him the S. boulardii, unelss his doctor OK's this first. Taking nutritional yeast, or in this case, a "probiotic" yeast, can sometimes cause foot cramping, by somehow interfering with calcium being absorbed, I think. If this (foot cramping) happens, due to taking S. boulardii, you can increase food sources of calcium (like sesame seed "tahini", cooked salmon or sardines with the BONES in them--canned salmon or canned sardines, that is), and almonds also have both calcium and magnesium. To see if your son is getting C. diff (hopefully not), have him give in a stool sample to his doctor's office, and have them get the stool sample tested to see if there's C. diff in it. I hope this helps. Carol cell: 970-531-5000 fsds@rkymtnhi.com

Dr. Trifiletti's press release of Wed., Feb. 23, 2012, shows how the Le Roy girls have INFECTIONS (Streptococcus Pyogenes, Mycoplasma Pneumonia, and Lyme Disease), that led to their "tic disorders". Dr. Trifiletti's press release also had contact information for Dr. T., and also websites (links) for more info about PANDAS: "To reach Dr. Trifiletti contact: Telephone: 201-962-7284 Email: trifmd@gmail.com Website: http://www.site.neurokidsr.us For additional Information about PANDAS [Pediatric Auto-immune Neuro-psychiatric Disorder Associated with Streptococcal bacteria]: http://www.pandasfoundation.org http://www.savingsammy.net http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questionsabout-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcalinfections.shtml http://ocfoundation.org/PANDAS http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.pandasnetwork.org ######### " ---------------------------- I hope others in Le Roy and in Corinth, NY, will contact Dr. T. Sincerely, Carol (Concerned lady)

Hi All, for completeness, here is what Beth Maloney thought about the white paper (she sent an e-mail blast): "Susan Swedo, MD, James Lechtman, MD, and Noel Rose, MD finally came out with a paper proposing that PANDAS fall under the umbrella of something called PANS. The paper's attached [in an email from Beth]. It's an open-access article so distribute to whomever you like. Please read it for yourself and come to your own conclusions. My analysis is that while PANS was touted (and even claims) to expand the criteria, include more children, recognize more infections, etc. etc., even a cursory review discloses that the opposite is true. Many sick children are excluded under this proposal, including those who fit the diagnosis of PANDAS. It narrows the criteria and doesn't expand anything other than the age range. And mysteriously missing is virtually any discussion of autoimmunity and antibodies. My hope was that this paper would support the conveyance of one clear message: when a child presents with rapid-onset, out-of-character behaviors the treating physician should first consider an infection. Apparently that was too much to hope for. In a nutshell, the proposal is that there needs to be all three of the following for PANS: (1) OCD or an eating disorder, (2) two of seven other behaviors, and (3) no other diagnosis to explain the behaviors. In that regard, rather concerning is the suggestion that children be subjected to lumbar punches (spinal taps) in furtherance of criteria #3. The examples are endless, but in short: If your child does not have OCD or an eating disorder - he's excluded If your child presents with only tics - he's excluded If your child wakes up tomorrow and won't go to school, screams for you while you're in the bathroom, and must sleep in your bed - she's excluded If your child suddenly develops ADHD-like behaviors - she's excluded If your child suddenly has explosive behaviors - he's excluded If you child suddenly starts wetting herself day and night - she's excluded. None of the foregoing will qualify the child for PANS. Moreover, the researchers further describe a "hierarchy" where PANDAS falls under the general diagnosis of PANS. This makes no logical sense because "PANS" excludes so many PANDAS children. Why did they do this? It's an attempt to carve up the medical turf. This is politics driving medicine, and the casualties are your sick children. Personally, I'll not be supporting PANS or any proposed diagnosis that excludes so many desperately ill children from the treatment loop. I plan to do exactly what I did when the NIMH told me Sammy didn't have PANDAS: ignore them and keep going. And I expect that the doctors who TREAT children - not just study them - will do the same. I encourage you to write Dr. Swedo and share your thoughts. Her email is listed on the paper as swedos@mail.nih.gov. " Thank you for posting Beth Maloney's comments! Beth's book is "Saving Sammy -A Mother's Fight to Cure Her Son's OCD" [OCD=Obsessive Compulsive Disorder], and Beth's website is http://www.savingsammy.net/ Sincerely, Carol http://cantbreathesuspectvcd.com