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concerned lady

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Everything posted by concerned lady

  1. 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 tak
  2. 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
  3. 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 ema
  4. Dear Michael/Tampa, I got your PM and thank you. I replied to you, in a PM. Sincerely, Carol
  5. 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
  6. 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
  7. 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 di
  8. 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 a
  9. 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 r
  10. 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 fo
  11. 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
  12. 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 cause
  13. 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 bacte
  14. 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.
  15. Hootie, which homeopathic remedies did you use, and what brand(s) were they? Did they contain lactose (milk sugar), alcohol, water, or ?

    Thanks in advance, for your reply.

    Carol

    http://cantbreathesuspectvcd.com

  16. Thank you I had my tonsils removed when I was 4 (that was back in the "ether" anesthesia days of 1940's...), so I had no say about it. Later, as an adult, I've read that removing tonsils causes problems with decreasing a person's immune response to infections. If that's true, what are the pros & cons of getting tonsils out, regarding PANDAS patients? Is removing a reservoir of strep bacteria the more important factor? Thanks in advance, for explaining. Carol fsds@rkymtnhi.com It seems that in many situations removing the "nidus" of infections (if strep i
  17. Which homeopathic remedies did you use, and what brand were they? Did they have lactose (milk sugar) or alcohol in them, or just water, or ? Carol
  18. Thank you I had my tonsils removed when I was 4 (that was back in the "ether" anesthesia days of 1940's...), so I had no say about it. Later, as an adult, I've read that removing tonsils causes problems with decreasing a person's immune response to infections. If that's true, what are the pros & cons of getting tonsils out, regarding PANDAS patients? Is removing a reservoir of strep bacteria the more important factor? Thanks in advance, for explaining. Carol fsds@rkymtnhi.com
  19. Lynn added to my knowledge. Lately, Beth Maloney also added to my knowledgel And now, I'm learning a bunch from many of you, here!

  20. My website is about a breathing problem called VCD (vocal cord dysfunction). Link to home page is http://cantbreathesuspectvcd.com

    Years ago, at a VCD conference held by Nat'l Jewish, in Denver, CO, a pediatric pulmonologist said that "tic disorder" can sometimes be a VCD "mimic". That's how I first learned about PANDAS. Then, Lynn, mom of the sneezing girl, L...

  21. EAMom, please email me at fsds@rkymtnhi.com

    I have some questions for you.

    Carol

  22. If anyone contacts Ruby and her mother Sherri, please ask them if the daughter Ruby has ever (or recently) been checked for HYPER-THYROIDISM. Her bulging eyes look like "exopthalmia" to me (a "sign" of over-active thyroid gland.) Carol http://cantbreathesuspectvcd.com
  23. Does anyone know what the occurrance rate of PANDAS is, in unvaccinated children in the U.S. (& in other countries like England, Canada, Australia, etc.), such as in Amish or other communities, compared with the rates of PANDAS in vaccinated children? Here in Colorado, I've read that it's getting more common for parents to opt out of getting their children vaccinated (for 1, more, or all childhood vaccinations). There are 3 choices that parents in Colorado have, for saying no, and for still being able to have their children attend public schools; 1) medical 2) religious 3) person
  24. Great points! To help your sinus infection, are you doing any nasal irrigations? Please see my "sinus tips" (many of these sinus tips are from Dr. Robert Ivker's book "Sinus Survival"), on webpage 10 of my website. See Appendix A (sinus tips) at this link: http://cantbreathesuspectvcd.com/page10.html Sincerely, Carol
  25. ____________________________ I watched the whole hour long interview, and I agree with all that "thenmama" wrote above. I urge everyone to watch it, because there were subtle and not so subtle things going on, in their answers, and in their non-verbal behaviors, in response to questions posed by the interviewer. They did behave as if under siege, and if they weren't so blind and arrogant in their beliefs, I might have felt more sorry for them. They were at a loss for a reply, when a question was raised about how ulcers used to be thought of as being caused by psychological stress, but
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