Tragic Example of Misinformation about Allergies

I found this shocking video on YouTube. It is a tragic example of what happens when a child is misdiagnosed and the family is given a diagnosis of “Multiple Chemical Sensitivity”.   

From the video, I seriously doubt that this child is being treated by a board certified Allergist- Immunologist. Her treatment (sub-lingual drops for food allergy???) is definitely not a scientifically proven therapy.  The insurance company is absolutely right.  ($2500 a month? Who are they kidding?)

  It also does not speak well of Fox News’ fact checking department.  A phone call to any trained allergist would have revealed to them that this child’s treatment is bogus.

Also see Multiple Chemical Sensitivity and Food Allergy pages

June 2007 UPDATE: Thanks to Orac and “Respectful Insolence”, we have an insight into Dr. Patel’s finances and the income she has acquired through her practice($30M, dang! there’s gold in them thar neutralizing enzymes!)

LINKS:
Multiple Chemical Sensitivity Syndrome Has Strong Psychological Component

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50 thoughts on “Tragic Example of Misinformation about Allergies

  1. These families are so desperate that they are vulnerable to anything that sounds plausible to them. I can understand that it seems plausible because Dr. Patel is double-boarded in gastroenterology and internal medicine although not immunology.

    It is a food allergy rather than MCS but what did you think of the newspaper reports of the upcoming paper in JACI that children were gradually desensitised to egg?

    SLIT is popular for seasonal and perennial allergies (not food) in Europe but not in the UK. There have been some very small-scale trials involving food but I gather that either the results have not been promising or the methodology was questionable.

    I wonder if the 2500 dollars per month includes the special foods as well as the remainder of the therapy. Not that this could include the cost of the mother needing to stay home to tend to her daughter, restrictions on the other children etc.

    I’m not sure that I understand why Fox ran this item apart from seizing an opportunity to thump a medical insurance company. I disliked the analogy with bone marrow treatment. Bone marrow was a plausible modality: maybe SLIT for food allergies will also be retrospectively validated, I don’t know. But the daily saunas for detoxing and the rest?

    I could continue with some observations about the surprising substances that the little girl was able to tolerate but they would just sound mean, and I mean to be observational rather than snide.

    Regards – Shinga

  2. Hi Shinga, Thanks for your response. What I am questioning is the “diagnosis” of Multiple chemical sensitivity in a child, which if you check my page on this blog, has yet to be established as a documented physical/ medical problem. Real food allergies do exist and Dr. Burks of Duke has reported success with gradual oral desensitization with peanut and egg, but these are given in very tiny measured amounts under close medical supervision, and are still experimental. I believe the Dr. Kalpana Patel (practicing in California) you linked to is not the same physician in the story. There is another Dr. Kalpana Patel in Buffalo, NY:

    http://www.medical-library.net/doctors/webpage.php?id=349

    who practices “Environmental Medicine” among other things and whose site does not list her training or board certifications. I wanted to call attention to this case and use it as a cautionary tale.

  3. I echo your misgivings as to the existence of the condition MCS in a child. I had a number of other misgivings, based on what I saw in the video, but I thought that it would be unkind to mention them.

    I had hoped that the parents were at least consulting a gastroenterologist for these presumed food allergies but, given that this is a different Kalpana Patel, I find it the more perplexing. I had my reservations about how somebody with that background could advocate saunas etc. but having had a look at the link you provided it makes some sad sense.

    Regards – Shinga

  4. Actually, according to this site a Dr. Kalpana Patel is board-certified in allergy/immunology, and also an assistant teacher in that subject at a university in New York.

    http://uhmc-focus.uhmc.sunysb.edu/cafad/PhysicianProfile.asp?drlink='8788177

    If that link won’t work, type her name in here: http://www.upsb.org/default.asp

    Here is the Lundy Family’s website. They also live in New York:
    http://www.theroostercrows.com/index.html It gives a bit more detail about the child’s condition and the various treatments they tried.

    Also, the video said that the $2,500 included all the child’s food and other therapies as well as the doctor’s bills.

  5. The Lundy family resides near Buffalo, NY and the Dr. Patel Purple Kangaroo is referring to works in Long Island and is on staff at SUNY- Stonybrook. That Dr Patel is indeed a board certified allergist-immunologist and I’m sure would have given the Lundys better advice. Unfortunately, I think they are seeing the Dr. Kalpana Patel who is an “environmental allergist” in Buffalo:

    http://www.medical-library.net/doctors/webpage.php?id=349

    and after reading the roostercrows site, I am even more dismayed.

  6. You people have no idea what you’re talking about….unless you’ve had these problems and had to seek treatment outside of what a “traditional” allergist or gastroenterologist can do for you, you have no right to sit in judgement. Open your minds and have some compassion!!!

  7. The entire purpose of this blog is to dispel inaccurate info regarding “multiple chemical syndrome” and other allergic- immunologic diseases on the net. I have so much compassion for these patients that I want them to get the correct diagnosis and seek the medical help that addresses their problem instead of being exploited by “non-traditional” practitioners that do not offer any proof of their efficacy (which is why the health insurers won’t pay for their treatments)
    Remember what they say, “Don’t keep such an open mind that your brain falls out!” Also, when people resort to name calling, it’s because they don’t have anything else to back up their arguments.

  8. Pingback: Clarifying Misconceptions About Allergen Immunotherapy « Allergy and Asthma Source

  9. It is very tragic indeed. Unsuspecting parents and a journalist/TV station interested in ratings. I guarantee if she studied and learned about allergies, there would still be no follow-up with an “Oops, guess we were mistaken” Special Report.

    I have had 3 close personal friends fall victim to Sensationalist Journalism. All three were a case of bad reporting and no follow-up with corrections. I rarely watch the news anymore.

  10. For those of you who deny that people can suffer from being Multiply Chemically Sensitive you are wrong. It may not be proven in your world, but when my son is exposed to chemical cleaners he has very specific reactions. I used to love having my house cleaned with all the strong cleansers. I loved the smell of chemicals, so you know I wasn’t always an anti – chem person.

    I don’t know if I agree or disagree with this doctors remedies, but the condition does exist. I am battling with whether or not my son should return to school because he is much healthier and happier not being exposed to the harsh chemicals that are used to clean the facility. Don’t judge this mom. She is just trying to help her child. Most doctors wont even admit that this is possible and she is seeing improvement so how can you say this is not true? Yes she had to change her whole life and spend a ton of money, but her children are more important to her.

    Is that why so many people are against the idea of MCS? They don’t want to change their lives to help others? If any of you watched the video you would have heard that the child could have died. Why are you putting these people down?

    I am desparate to help my child. He also has many food allergies that I am willing to live with. I just have to feed him what he is not allergic to, but chemicals I am not willing to live with. He has to eat, but he doesn’t have to be exposed to harsh chemicals that are probably hurting more people than we are willing to admit.

    Good Luck to all of you. Try to see the truth even though it is not what you want to see.

  11. This is the same argument of the parents who believe that “vaccines cause autism” in spite of the mountain of evidence to the contrary, as is the case with MCS. If you really wanted to help your child, you would want to get an accurate diagnosis and evidence based treatmnt instead of the hocus-pocus that is demonstrated in the video. I sympathize with your situation, but closing your eyes and refusing to listen to science is not helping your child or your family. This is the reason for this post and this site, to provide reliable info to patients and their families and fight all the misinformation that’s out there. If you want to believe your child has MCS, then that’s your choice, but don’t blame the rest of us for promoting evidence based facts.

  12. To Dr. de Asis

    I have proven that my son suffers from MCS. I have experimented over and over again. Maybe it is not considered an allergy, but he has extreme negative physical and behavioral effects when he is exposed to harsh chemicals (I used to love using all of those cleaning supplies). What do you call that if not MCS? How can it be proven? Let me bring my child to your office so you can test him while exposing him to chemicals. You will see the difference before and after the exposure. Then you can explain what it is to the rest of us. Just because you haven’t proven it in your lab doesn’t mean it doesn’t exist. You wont do it though because no one makes money from research. I am finding that Doctors only want to do and say things that will make them money. Eliminating chemicals from our childrens lives doesn’t make anyone money and therefore will never be recommended by most Doctors. My son can’t take your allergy medicine because he can not tolerate that either.

    I do not live an extreme life like this woman on the news. She is more courageous than I, but I am going to try my best to help my son. I believe that Doctors are good for most people, but in this case you can be hurting children or people if they are truly sensitive to these chemicals.

    By the way I think I heard that there is proof that the rise in Autism may have something to do with all the new vaccines. It depends on who you talk to. Lung cancer may be genetic, but if you don’t smoke you dramatically lower your chances of getting it. Autism could be genetic, but if you don’t add Mercury you may lower your chances of getting it.

    Personally you have lowered my faith in Doctors. Doctors are human and make mistakes. You only know what your Big Pharmaceutical funded school taught you (the more the toxins the better $$$$$). I on the other hand live with the reality.

    I came to this site for help about my sons problem and didn’t realize it was a place for closed minded Doctors tell people that there is nothing wrong with their kids and that they are imagining their poor little bodies responding to the Lysol and ajax they just put all over the house. Seriously if it is an adult that says they are sensitive you say they are imagining it and if it is a child you say it is the parents imagination? God help anyone who has MCS because these doctors have abandoned you!

  13. How was your son “proved” to have MCS? I would be interested in knowing which doctors evaluated and are treating him and what methods they used. How was the diagnosis made?
    It is always fascinating to me how people think they can win an argument by implying that the other person has ulterior motives. It would be so much more profitable for doctors to treat MCS (if it existed) by fooling patients and giving them all the treatments described in the video (which cost thousands of dollars a month out of pocket for the family) instead of trying to educate the public.
    There is an ocean of difference between the evidence proving the link between cigareete smoking and lung cancer and the associations made between vaccines and autism. Read the NIH website:

    http://www.nichd.nih.gov/publications/pubs/autism/mmr/sub3.cfm

    Oh, but maybe you don’t believe the National Institutes of Health or the American Academy of Pediatrics, but as I said before, that’s your choice.

  14. Among the difficulties many parents have in working with rank and file allergists is their training gives them little exposure to alternative treatments such as allergy drops for food and environmental allergens. Parents recognize that writing a prescription and dismissing a concerned parent is a poor substitute for treatments that empirically work. Chemical sensitivity is real, rotation diets are appropriate for food allergies and there is better evidence for allergy drops (that squirty thing the mom was doing) than allergy shots (ARIA Guidelines JACI 4/07). Allergist should do less finger pointing, less looking backwards and more look looking towards the future if their specialty is to survive. It is not quackery if it works and throwing stones at new therapies does not help patients. It does tarnish the image of the thrower.

  15. “Chemical sensitivity is real, rotation diets are appropriate for food allergies and there is better evidence for allergy drops (that squirty thing the mom was doing) than allergy shots (ARIA Guidelines JACI 4/07).” I have read the ARIA guidelines and nowhere does it state that allergy drops for multiple chemical sensitivity/ IEI is effective. In fact, if you actually bothered to read the ARIA guidelines instead of just quoting a “sound bite” that you may have heard somewhere else, you would be aware that the guidelines only refer specifically to Allergic Rhinitis and Asthma, hence the title “Allergic Rhinitis and its Impact on Asthma” (ARIA, get it?) study. If this is the type of thinking that attempts to pass for educated discourse on the net, you can see what makes my job so difficult.

  16. I just found this site today by accident but I do know baby Anne and her situation and I want to comment on “what happens when a child is misdiagnosed”.
    Many physicians and more than one pediatric gastroenterologist had the opportunity to help this child but could not, which is why one such doctor referred this family to Dr. Patel. The child was dying and the rest of the doctors told the parents to take her home to die. Remember Anne was malnourished and had diarrhea and rashes. Conventional medicine had nothing to offer this baby. Look at the child today! She is alive and thriving–not cured however.

    And she is not the only child to receive such care from Dr. Patel. Many children come from all over the US for her treatments because she is the last resort.

    Insurance companies don’t want to pay for many conventional treatments either, even when it is written in the contract so they deny and deny until many a patient gives up.

    And this business about an independent insurance panel which denied coverage is a hoax. They are not independent! They are getting paid by the insurance industry.

    The proof is in the results. Dr. Patel gets results and as you can see, it isn’t easy for the family to follow her protocol.

    Dr. Patel may charge too much for what she does; I don’t really know her expenses for this therapy. More doctors should study her methods and try them themselves. The truth is that many doctors in NY and PA refer difficult patients to her because they care what happens to the patients, NOT WHAT IS GENERALLY ACCEPTED PRACTICES.

    As for her loss of money, she came from a wealthy Indian background and that was not just her money but family money which had been pooled. Had she gone bankrupt,would you still have been harping on her?
    Keep her name in mind in case your grandchild is dieing. She is a brilliant Pediatrician who cares for children.

  17. Ms. Starr:
    I do not go by hearsay and until I am personally able to review her medical chart and speak to the pediatricians and the gastroenterologist who treated her, I will have to go by the evidence presented in the video, which is actually sympathetic to them.
    I repeat Multiple chemical sensitivity is not yet a scientifically proven disease (except for the psychological components) and the reason why Dr. Patel’s treatment was not approved by their insurance is because there is no scientific evidence that they work. If they’re so great and she’s curing so many patients as you claim, why doesn’t she publish her cases in a peer reviewed medical journal?

  18. Why don’t you personally contact Lisa Lundy and find out for yourself those names of doctors.

    Twenty-five years ago my son was treated with sublingual drops for similar reasons by a doctor who is now retired but he had to stop treatments for political reasons. Your organization is very political and threatening. I believe there are studies by Otolaryngologists with a subspeciality of Allergy, not your organization. The name of the researchers are King and Pierce and it is published in the Journals of Otolaryngology. If you are truely interested in finding the answers, you will look this up.

    Dr.Patel may even allow you to sit with her one testing day and you will be amazed at the reactions of the patients before and after the doses are given. She keeps records and may write a book when she retires about her treatments and how much of the medical community has treated her. Right now she is very busy treating patients who are very ill.

    Don’t be so naive about the reasons this hasn’t been published. Your organization of Allergists does NOT WANT the COMPETITION is how I see it.

  19. Could you give me a more precise reference other than “some article by King and Pierce”? At this time, the only proven indication for sublingual immunotherapy is for grass pollen allergic rhinitis. Certainly not for food allergies. If you want to spend thousands of your hard-earned dollars on unproven “therapies”, go right ahead, just don’t expect the rest of us to sit quietly by and not say anything about it.

  20. Doc, you will have to look it up as I did many years ago. It is still there. I never said “some article” but I mentioned studies published in a respected journal.

    We, of course, don’t want to spend a dime on unproven therapies; we simply want our children to be healthy and if conventional therapies don’t work, we will look else ware. I am praying the younger generations of doctors will look into these therapies and perhaps even improve on them.

    And since you’ve never seen a child treated in this manner, keep an open mind. I’ve seen the evidence.

  21. I have seen children treated and diagnosed by these practitioners in this manner, just none that were given the correct diagnosis or actually helped, which is one of the reasons why I started this site, so that reliable and accurate information will ve available. By the way, I am still one of the “younger generation” of doctors, it is these methods described in the video that stem from discredited practices from the middle of the last century.

  22. Well, here is the difference. These children are actually being helped unlike the ones you have seen.

    Just because you’ve seen something called by the same name, doesn’t mean you know what she is doing.
    Most of her patients are coming to her because they’ve seen the difference she has made in some other patient’s life. And now there are second generations, children of parents who were treated by her as children.

    Lisa Lundy has just put out a book about cooking for the allergic child.

  23. So entire multigenerational families are now being “treated”? Sorry, I can’t go by your say-so or some anonymous anecdote. There’s this thing called “scientific evidence” that requires documentation, replicability, and measurement which I have not seen with anything you’ve said. As I said before, if these methods are so wonderful, where’s the proof? I quote the American Academy of Allergy, Asthma, and Immunology position statement on Idiopathic Environmental Intolerance/ MCS:

    “IEI-also called environmental illness and multiple chemical sensitivities-has been postulated to be a disease unique to modern industrial society in which certain persons are said to acquire exquisite sensitivity to numerous chemically unrelated environmental substances. The patient experiences wide-ranging symptoms, but evidence of pathology or physiologic dysfunction in such patients has been lacking in studies to date. Because of the subjective nature of the illness, an objective case definition is not possible. Allergic, immunotoxic, neurotoxic, cytotoxic, psychologic, sociologic, and iatrogenic theories have been postulated for both etiology and production of symptoms, but there is an absence of scientific evidence to establish any of these mechanisms as definitive. Most studies to date, however, have found an excess of current and past psychopathology in patients with this diagnosis. The relationship of these findings to the patient’s symptoms is also not apparent. Rigorously controlled studies to verify the patient’s reported subjective sensitivity to specific environmental chemicals have yet to be done. Moreover, there is no evidence that these patients have any immunologic or neurologic abnormalities. In addition, no form of therapy has yet been shown to alter the patient’s illness in a favorable way. A causal connection between environmental chemicals, foods, and/or drugs and the patient’s symptoms continues to be speculative and cannot be based on the results of currently published scientific studies.”
    The full statement is on:

    http://www.aaaai.org/media/resources/academy_statements/position_statements/ps35.asp

    As I said, if you don’t want to believe dozens of national and international medical societies, and go by your own “observations”, fine. Do what makes you happy, just don’t get offended if someone like me points out the body of scientific evidence that contradicts you.

  24. Doc,

    Did something happen to you or your family to cause you to go after Dr. Patel? Why else are you doing this??
    The AAAAI doesn’t like what the competition is doing and they have continued to berate them yet not provide any alternatives. This is a political witch hunt, plain and simple.

  25. Aha! I was expecting that, it’s a common debating trick to switch topics when you can’t rebut the opposing side’s arguments (i.e.: you can’t give me the scientific evidence to back up your claims). I have nothing against this Dr. Patel, other than she gives the rest of us doctors a bad name. I just want to protect other families from this kind of pseudoscience by presenting the facts and exposing the fakery.
    By the say, If you put out stuff on the Internet, like posting this video on youtube, then you invite other people to comment on it, whether you like the comments or not, it’s something called free speech.

  26. And how is she giving the rest of you a bad name?

    She has alternative views of disease in bodies but her patients are happier.

    Your organization is giving itself a bad name. The doctors within it are not able to treat all patients but resent the doctors who can.

    Forget all the talk about pseudoscience and talk about RESULTS.

    Apparently their are many others doctors in this nation who can because they continue to refer patients to her.

  27. Please ask the doctors you speak of to publish their results in a peer-reviewed journal so that the rest of us can critically assess their methods and these much trumpeted results.
    I repeat for the nth time, hearsay is not admissible evidence in a court of law, and is certainly not the basis for a good scientific discussion. Doctors. by definition, must base their practice on scientific, evidence based medicine, otherwise we would no better than charlatans.
    Finally,I ask again for the nth time, if there are “RESULTS” (caps yours), where the heck are they? Please, by all means show them to us
    Since you can’t (because there is none), then please desist from pretending that this practice is based on any kind of science.
    A good friend reminded me that “She who argues with a crazy person is also crazy”, so I must end the repartee with this particular reader.

  28. I disagree. The documentary was not a political witch-hunt. It was designed to let viewers realize that you should have a second opinion on any and everything, from a complex asthma attack to simple fever.

  29. Doc,

    I, myself, have MCS. I was exposed to a chemical while at work for 3-4 days and became very ill. Before that, I was fine and healthy and living a healthy life. However, after the chemical exposure I am constantly having reactions (headaches, burning/itching skin, nausea, coughing, gastrointestinal issues, sore throat, and a mariad of debilitating physical problems) to perfume odors (which I used to wear with no problem), all cleaning agents, detergents, bleach, foods that I ate previously, pollens, dust, my own furniture, my matress, my carpet; I have memory loss and my IQ has decreased. I could go on and on. In addition, I now have asthma. Mind you, I had no problems before the chemical exposure save the occasional cold.

    So doc, although there might be no scientific proof in your world, I am walking proof at the age of 41. This happened to me at age 40. I might not have believed it possible if it hadn’t happened to me.

    I have been surfing the net trying to find someone to help me here in Illinois, but now I see I will probably have to leave the state and go to your Dr. Patel for assistance. I only pray that she will take adult patients. I have seen two allergists and two internist, and they have given me the traditional allergy meds, which do not help. Sometimes stepping outside of the norm or the traditional is what we have to do.

  30. Given the current data about panic disorder associated with MCS and IEI, you should probably consult with a psychiatrist before committing yourself to the unproven therapies.

  31. Please tell me what does panic disorder have to do with my physical reactions to chemicals? Further, what meds could a psychiatrist possibly give me to help with these REAL reactions?

    I’m afraid that you are missing the entire point, Doc. I have been and am currently treating with the traditional physicians, and these so-called proven therapies for allergies are not helping. So, please tell me what is a person supposed to do when they don’t help? Should we just continue to suffer? Should we allow our children to suffer if they have the misfortune to have MCS? Would you allow your own child to suffer?

    My entire life has changed, and it’s nothing good. And just so you know, I am currently on a med, in additon to all of the allergy and asthma meds, to keep me from panicking.

    Do you have any other suggestions?

  32. If you go to the link immediately below the video on this page (http://allergyasthma.wordpress.com/category/multiple-chemical-sensitivity-syndrome/), you will see that the only verified abnormalities found in MCS (and many scientists have looked) are associated with panic/ anxiety disorder,which should be adequately treated by a psychiatrist.
    Why would anyone want to pursue treatments that have not been shown to have any benefit for a condition that has been shown to be psychological in nature? These alternative practitioners prescribe therapies without any scientific basis. If I were in your situation, I would rather seek evaluation and treatment that had some scientific proof supporting it, particularly since these therapies cost a lot of money (insurance does not pay for them because they have no science to back them up). I suggest you talk to your psychiatrist and discuss more aggressive treatment for panic/ anxiety disorder.

  33. So, basically what you are saying is that once I was exposed to the chemical, I all of a sudden acquired panic disorders and therefore made myself believe that my face was red & blotchy, my lips were burning & itching, and all of the other symptoms I have when exposed to chemicals. Where would the panic come from? I have smelled chemicals before so I didn’t panic when I smelled this one. I simply thought that work was being done in the building. Trust me the symptoms set in before I had a chance to “panic” about it. As I said previously, I used to use all kinds of thing with chemicals in them. Nowadays, most things have chemicals in them. Why would I all of a sudden start panicking about it? You are not making any sense. I guess my panicking has caused the allergy tests that were performed on me to come up positive for allergies to practically everything too? Quite frankly, I don’t think that there is anything that will convince you, so I’m going to stop trying. I thought that maybe since you were a doctor, you might be able to help but I don’t think that you too ignorant to help anybody. You, yourself, should probably seek psychiatric help if you believe your own line of misdirected bologne.

  34. I am not familiar with your history and I have not examined you personally, so I can not offer you medical advice. All I can tell you is that there is no scientific evidence to date that supports any form of “hypersensitivity” reaction to multiple chemical or environmental exposures and that most of the patients who have these symptoms turned out to have a panic/ anxiety disorder that was misdiagnosed, so instead of getting their real problem treated they spent a lot of time and money barking up the wrong tree pursuing a “multiple chemical sensitivity” diagnosis which doesn’t exist. Therefore, I seriously doubt that you have this condition.
    If you really want to get better, you have to be open to other diagnoses and not be attached to one. This website is devoted to providing accurate allergy information to the public, and not to pander to unsubstantiated scams that are being propagated by people who can not back them up with any scientific evidence. If you disagree with the statements on this site, than that is your right.
    Question: What “allergy tests” were performed that came back positive and who performed them?

  35. My son has been on sublingual drops for food allergies and “airborne” allergies. His blood tests AND skin tests back up that he was cured. He had 2 skin tests and a rast and all showed allergic reactions to over 5 items, he had a skin test and two rasts and they were clear 6 mths after the drops treatment. I had to say shake your faith, but there is not scientific evidence for everything. Do you believe that there is life on other planets? Could there be? Seems to me you don’t know, neither do I. Do you think that Einstein is right about his theory of relativity? Do you think it was debated when he suggested it? Would one of the doctors like to see some links on that? I had to say this folks but there are a number of “scientific” debates right now that come down to a matter of opinion until the research is complete. Ask for opinions from 3 different allergists and you will get 3 different opinions. Since some of you won’t believe me, call 3 allergists and ask them the accuracy of RAST and skin testing. Let me know if you can find 3 that agree and then tell me allergies are clear cut. Ask them, while you’re at it, what is considered an allergic reaction. See how many include diarrhea and how many exclude it. We have enrolled in a long term allergy study by the way in Chicago IL. In the meantime, educate yourself, listen to multiple allergists, and make your own decision with the input of more than one expert.

    Finally, not everyone fits into a mold. Even treatments that don’t work most of the time may work on someone. (Yes, this is excluding treatments that have never worked).

  36. What questions did you ask and who were the 3 allergists you talked to? The whole rationale of science and medicine, is that there is a body of evidence based knowledge that is reproducible, and it is the specialist’s responsibility to be knowledgeable and expert about this body of knowledge through training and study.
    Medicine (including allergy) is not some hocus-pocus that varies from doctor to doctor, it is a science. Anyone who says that 3 allergists can’t agree on anything is seriously misinformed or isn’t talking to real allergy specialists. What is the training of these allergists you spoke to? Did they go through an allergy- Immunology fellowship program and are board certified by the American Board of Allergy and Immunology or are they these so-called “environmental allergy” people who are definitely not allergists (sounds like the latter because the real allergy specialists do not use sublingual drops to treat real food allergies since it can possibly kill patients).
    Another thing, exactly what “RAST” test are you referring to? Even if you treated an allergy patient with real immunotherapy (not sublingual drops), it takes at least 3 years to see an improvement, not 6 months. So I doubt whether your son got the “RAST” test that real allergists use. Please ask the person who did the test exactly what they were testing for.
    The whole purpose of this thread is to educate people and keep them from wasting their money on bogus treatments like sublingual drops for food allergy. It is sad to see how many people are fooled by these treatments.

  37. Reading through all of these comments makes me sad.

    I can certainly sympathize with the parents of children with multiple allergies, as I have one of my own. He has been diagnosed with MANY food allergies (including milk, eggs, rice, brocolli, apples, pears, chicken, beef, pork, turkey, corn and soy) – and these were all confirmed by MULTIPLE RAST tests, skin-prick tests and patch testing at Children’s Hospital of Philadelphia (CHOP) – one of the leading hospitals in the country, mind you, when it comes to pediatric allergies. In addition, he was diagnosed with Eosinophilic Esophaghitis (a food allergy disorder) by his gastroenterologist at Vermont Children’s Hospital, who is working closely with his doctors at Philadelphia. Without experiencing it yourself, there is no way you could ever understand how difficult it is for a parent of a child with these conditions, or what the child goes through.

    What I can tell you is this – after having gone through MANY pediatricians, who insisted there was nothing wrong with our child and that we were simply being overbearing, first-time parents who did not know what they were talking about, we were fortunate enough to find a sympathetic ear in a pediatric allergist in our area who happened to mention that Philadelphia would be the place to go. Since then, our lives have changed dramatically. We have finally found doctors who, instead of dismissing what we say and treating only a very small set of symptoms, are willing take us seriously and who truly care to find the root of our child’s problems.

    Most importantly we have discovered much of what is causing our son’s ailments – which include excessive vomiting and regurgitation, diarrhea, slow digestion, skin rashes and eczema, chronic post-nasal drip and sinus infections, upper respiratory infections, asthma-like symptoms, … (would you like me to continue?). I am pretty sure all of these fit into the “definition” of MCS.

    If it had not been for that ONE doctor, we quite possibly could be in the same boat as this mother and her child – taking our son to a “doctor” receiving treatments without any proven efficacy. I am not in any way dismissing or disagreeing with what Dr. Patel does. I am simply saying that I understand how a parent chooses a nontraditional route. We ourselves were desperate to find someone who could help our son. The problem was finding someone to listen. If there were more doctor’s out there willing to listen to their patients and their families, instead of being insulted when questions are raised, all of this would be a nonissue.

    It all boils down to this – there are truly great doctors and there are average doctors. The difference is that truly great doctors take pride in their work (which is much more than I can say for the first seven doctors we brought our son to). They stay on top of the latest research, they LISTEN to their patients, and most importantly, they are not afraid to say when they don’t have an answer, but are always willing to check with respected colleagues and medical references for advice, or refer you to someone who can help. This is what sets a truly great doctor apart from an average one. In my experience, and my son’s experience, truly great doctor’s are extremely rare.

    My best advice to all parents out their with similar experiences – if you feel your child’s doctor is not taking you seriously, is dismissing you, or is simply not thinking with an open mind – go elsewhere. It is extremely frustrating, and it is A LOT of work – but eventually you will find someone who is good at what they do and is willing to help.

    As for you Dr. de ASS – which group do you fit in? Based on the comments above, I am pretty sure I know what the answer is. And just for your own info – I have consulted with an expert in this “hocus-pocus” as you call it – her name is Dr. Doris Rapp. I am sure you have heard of her – she is a board certified environmental medical specialist and pediatric allergist. She has made many appearances on TV (Oprah, Montel, Larry King, Donahue, etc., etc.,), and has MANY published works on the effects of the environment on the body. She also has a website specifically made to educate the public about how the environment affects the body (www.drrapp.com).

    I’d be willing to bet you wouldn’t stand a chance in a debate with her. And, by the way, Dr. Patel comes highly recommended by her.

  38. Hi Tina, I am happy that you and your son have found a valid diagnosis and treatment for his condition. The difference between the physicians at CHOP and Dr. Patel and Dr. Rapp are so huge that I hesitate to even mention them together in the same sentence.
    I agree that it may take a lot of persistence before you find the appropriate diagnosis and treatment for a child, and I am sorry that you met with such resistance with the first physicians you encountered. However, that is partially due to a lack of education and information on what are true food allergic/ hypersensitivity reactions and what are not. Drs. Patel and Rapp fall into the latter category who peddle unproven and unscientific and dangerous “treatments” to families of patients instead of directing them to places like CHOP where they can find evidence based diagnosis and treatment.
    The mission of this site is to educate the public and other physicians about Allergic/ Hypersensitivity reactions and part of that mission is to identify charlatans such as Dr. Patel and Dr. Rapp who prey on unsuspecting patients and their families.
    Don’t believe me? Since you already know and trust them, ask your doctors at CHOP what they think of Drs. Patel and Rapp.

  39. Well said.
    But I still think the focus of the medical profession should not be to hunt out those who claim to have nontraditional cures for allergies. Instead, they should be educating and directing patients on where they can go when no one else has been able to help them. (i.e. CHOP, Cincinatti, Boston, etc.) I just don’t understand why it is so difficult for doctor’s to admit when they do not have the answer. Is it a pride issue?

    All I know is that it is very disconcerting to think back on the number of times we have been given incorrect information in regards to our son. And I can tell you it has been at the specialty hospitals (Boston, Vermont, Shriners, CHOP – my son is a patient at all of these) where we have gotten ALL of our good, sound diagnoses and treatment protocols – most of which have contradicted the advice we have been given by his doctors here at home.

    I work as a CPA and I just could not fathom providing the same approach to the services I provide to my clients. If I am going to give out advice to someone, you can be sure I am researching the issue and making sure the advice I give is correct. To do any less, in my eyes, is negligence. But the big difference is, the advice I give isn’t going to kill someone.

  40. Dear Dr. Lourdes de Asis,
    I am the mother featured in the FOX 5 NYC News story that you have posted on this blog and which the above thread has been discussing for some time now. My daughter, Anne, has NEVER, EVER been diagnosed with MCS or multiple chemical sensitivity. Where did you get that information? Any physician who has seen her or been involved with her treatment (including her dentist who happens to be an M.D.) knows that she has serious health problems that stem from her inability to absorb vitamins and minerals from her diet or from supplements leaving her severely malnourished. We know this from repeat blood work done over a period of three or so years.

    We were referred to Dr. Patel by a Medical Director for one of the largest medical practices in the United States, who told me that we were lucky that Anne was alive (this was when Anne was 20 months old) after other physicians said there was nothing they could do for her. Anne has IgE mediated allergies and non-IgE mediated food allergies, but those pale in comparison to her inability to absorb nutrients from food or supplements.

    The Medical Director told me that the Mayo Clinic, the Cleveland Clinic, and Johns Hopkins would NOT be able to help my daughter (I asked to be referred to those places). This makes me very sad to see you write about a child and family whose medical records you have never seen.

    We are lucky that she is alive and that she has improved dramatically in the last two years as her blood levels improve on various nutritional markers. I am completely confident that she will be well and healthy in the next two or so years. If you have any questions, please contact me. Thank you for posting my comments.
    Lisa A. Lundy
    Public Speaker & Author of:
    The Super Allergy Girl™ Allergy & Celiac Cookbook
    http://www.thesuperallergycookbook.com

  41. Dear Mrs. Lundy,
    Thank you for posting as I and all the participants of this thread are very interested in your comments. My comments and the comments on this post are in response your post on “YouTube” entitled “Super Allergy Girl” where it is clearly stated in the beginning of the piece that she is “Allergic to chemicals and most every food you can think of”, You may not be aware of this, and I don’t know why Dr. Patel did not inform you, but that statement IS the definition of Multiple Chemical Sensitivity Syndrome/ Idiopathic Environmental Intolerance. I am also curious as to her inability to absorb nutrients, has she seen a Pediatric Gastroenterology specialist, specifically which nutrients are you referring to?

    Putting the details of your daughter’s case in a public forum such as youtube and broadcast TV, which I assume was meant to elicit support to advocate for insurance payments for the questionable practices of Dr. Patel, by itself invited commentary, even those that you do not agree with.

    I would be very interested in the credentials of the medical director and dentist you mention. Do they have any expertise in Allergy/ Immunology? I would not advise relying solely on the advice of physicians who do not specialize in Allergy/ Immunology specially for a child with such complex problems. I am also curious as to why didn’t you go to Cleveland Clinic or Hopkins or Mt. Sinai to hear what they had to say. You may have read in earlier posts on this thread that many other families have been in your situation, and many sought the advice of experts in this field before resorting to marginal practitioners such as Dr. Patel and her colleagues.

    The mission of this blog is to educate the public about Allergy and Immunologic Disease and combat misinformation that is rampant on the Internet and the media about these diseases. There are many scam artists out there and if commenting on your daughter’s case (which you invited by doing the Fox feature and posting it on youtube) has prevented other families from falling victim to them, then this thread has more than served its purpose.

    I strongly encourage you to take your daughter to Cleveland Clinic, Mt. Sinai in NY, Mayo, or Hopkins. They will surely be able to help her more than Dr. Patel.

  42. Dr. de Asis

    This is not an allergic case but kind of intoxification. Believe or not, my wife is now floxed, took a lot of Levaquin and Avelox for her sinusitis, and now she changed from healthy to floxed person, tendonitis, muscle pain, joint pain, tinglings, burning with skin rashes or acnes, chilled body after burning, insomina, and etc. Someone said Glutathione IV may work for this floxed person since Glutathione is very stong antioxidnat and thus prevent body from free radicals. Because you are a doctor of allergy and immunology, so I would like to hear your opinion about this problem. One thing I should tell you is that my wife always has a aformentioned reactions with any medications even vitamins or magnesiums. I need anyone’s help. I really want my wife survive from those symtoms.

  43. Tony- from what you describe, your wife may have had side effects, or what is known as “adverse reactions” to quinolone antibiotics such as Levaquin and Avelox. Tendinitis, skin rash, and muscle/ joint pain are known side effects of these medications.
    These may also be signs and symptoms of an autoimmune disease such as rheumatoid arthritis or lupus.
    She should be fully evaluated by an allergist and a rheumatologist to determine the exact cause of her symptoms.
    I am not aware of any diagnosis of “flox” and I am not sure what glutathione would do for this condition. The important thing would be to identify what is causing her symptoms and the best place to start would be to see an allergist.

  44. I’ve had severe chemical sensitivity for 8 years now, I’ve been to many many doctors, and all conventional medicine has done for me is make me poorer and sicker. This is an illness that is not in their books and therefor they are not allowed to diagnose it for what it really is. Since they can’t find anything physically wrong they are forced to diagnose the patient with a psychological disorder. I’m afraid things will probably remain this way until someone comes up with a universal treatment that works.

    If this is a psychological disorder then I’d like to see documentation showing the success rate that psychotherapy has with it.

  45. i work in a store covered with mildew on walls washed ,covered with paint its coming back through. last month i had a sinus infection for 3 wks a few weeks ago my lungs just shut down doc took blood test said i was allergic to fungus.sent me to take allergy tests all were negative. he told me i had to quit smoking and my symptoms will go away.(i am 50 i know smoking never helped anything specially my lungs)but i say he was so wrong.ive worked in this building for 8 yrs not a day i go home my nosed isnt stuffed and dry. i cant work in chemicals, helth and beauty aides because its hard to breath.(purfumes,soaps,plug-ins,etc.) i process clothes on third shift and am in 1 place all nite right in front of that mold for 7 months now.when i go home i am fine. something is very toxic in that store and its killing me.the allergist also said most of what we hear about mold is hype. where did he get that from.i need help, please my environment is killing me and i have no where to turn

  46. Hi Dona,
    If your skin and blood allergy tests do not show any evidence of allergy to molds and you were tested by a board certified Allergy Immunology specialist, then you can not attribute your symptoms to mold allergy. There are many other conditions such as sinusitis, bronchitis, and lung disease not related to mold that can be causing your symptoms. These conditions can also be exacerbated by exposure to irritants such as chemicals, but are not caused by chemicals. Persisting in attributing your symptoms to a mold allergy that you do not have does not help you.

    If you really want to get better, you should consult with an Ear, nose, and throat specialist and a lung doctor for a full evaluation. Cigarette smoke is one of the worst chemicals to be exposed to and if you were seriously concerned about chemical exposure, you would quit smoking.

  47. I am a patient of Dr. Patel’s and her therapy does work. I have seen people that would have died if not for the help of Dr. Patel. I think one should get all of their facts correct before we try to defame someone.

    With regard to her finances, she is a successful Dr. because she is one of the best at what she does. Also, her husband is a very successful eye surgeon. Moreover, the money you speak of is the life savings of her family of which she was entrusted to manage.

    Dr. Patel is one of the FEW doctors that truly knows how to help people with multiple chemical sensitivity and other associated diseases. Your lack of knowledge and facts and strong opinion is saddening.

    Paul

  48. I wanted to ad to my post above to say the following: As you may or may not know, Dr. Patel was mentored by the pioneering Dr. Doris Rapp. Additionally, she works closely with and has authored text books with the great William J. Rae the foremost Dr. in the field of environmental medicine. The best environmental health doctors in the country share one thing in common… They have suffered from multiple chemical sensitivity themselves.

    Doubter like yourselves combined with the greed of insurance companies prevents this disease from being recognized and treated in its early stages. The truth is that the only people that get well from MCS are those that can afford to pay for their treatment on their own as insurance companies will not pay for the required treatment. Additionally, only the smart patients actually figure out what they are suffering from. So, if you have MCS and aren’t very bright or don’t have any money you are doomed to a progression of the disease that ends with end organ failure and an early death.

    You do humanity a grave disservice by making comments about that which you lack knowledge.

    • Please give us details of your condition and treatment so readers can judge for themselves. You may be happy with Dr. Patel’s treatment, but since you are anonymous and we have no specific details, your endorsement can hardly be considered valid.

  49. It’s amazing to pay a visit this website and reading the views of all mates concerning this piece of writing, while I am also zealous of getting experience.

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