Advice for sufferers and support group leaders

[ConcernedWriter]

I'm a newspaper journalist in Arizona. In the two years since I wrote about a local woman who suffers from what she believes to be some form of skin parasite, I have heard from dozens of people from across the country who read her story and recognized the exact same symptoms and experiences they have also suffered. I have listened, and continue to listen to these folks, and I try to help them in any way I can. I believe they do in fact suffer from a real physical disease that is not currently recognized by the medical profession. Unfortunately I have learned nothing substantial about the cause of this disease or the likely cure. But what I have learned is that the way most sufferers are going about seeking help from the medical community is actually hurting their chances of being taken seriously. Also, many are falling victim to unscrupulous purveyors of phony tests and treatments. Unfortunately, many of the Web sites and organizations created to help these people are actually contributing to the problem. So when people call or e-mail me, this is what I tell them -- the only thing I have truly learned about this issue that I feel I can enlighten people about. I'll simplify it into a list of do's and don'ts:

DO NOT think of skin parasite Web sites and those who post on them as authorities on the problem.

DO NOT try every folk cure for skin parasites you find on the Web.

DO NOT pay someone on the Web money to provide you with "the test" or "the cure."

DO NOT walk into your doctor's office with a skin sample or any type of sample. Apparently somewhere in the medical textbooks there is a chapter that says anyone who brings in their own sample is delusional.

DO NOT tell your doctor your theory about what is wrong with you.

DO NOT recommend or demand a particular treatment for yourself.

DO NOT try to prove to your doctor that you have a skin parasite.

DO NOT quote information from the Web to your doctor.

DO NOT pay money to a homeopathic or naturopathic doctor who just happens to know EXACTLY what's wrong with you and how to cure it.

DO talk to your real medical doctor about your EXISTING SYMPTOMS. Tell them how you feel, and show them any lesions, discolorations or other abnormalities. BUT DON'T TELL THEM YOUR THEORY ABOUT THE CAUSE. That's a sure-fire way to be dismissed as a delusory parasitosis case.

DO be persistent about going back to your doctor if the prescribed treatment doesn't work.

DO NOT give up hope! Others have recovered from this, and there is a good chance you will, too.


AND HERE IS A SPECIAL SECTION FOR THE PEOPLE SERVING AS REPRESENTATIVES OR SUPPORTERS OF THE SKIN PARASITE SUFFERERS' COMMUNITY:

DO NOT promote your personal theory about what is causing the disease. YOU ARE SETTING THESE POOR SUFFERERS UP FOR FAILURE WHEN THEY SEEK MEDICAL HELP. You are biasing and possibly misleading these people, and for what? How is your theory helping any one of them?

DO NOT host message boards that are nothing more than vehicles for the indiscriminate proliferation of theories and folk cures. Get your members to focus on sharing feelings, experiences, coping mechanisms and advice on how to approach the medical community effectively. BE A SUPPORT GROUP, NOT A HALF-BAKED MEDICAL STUDY.

DO NOT promote or allow anyone on your site to promote homeopaths, naturopaths, acupuncturists, hypnotists, psychics, witch doctors or anyone else.

DO NOT allow people to promote any supposed “cure” that could harm someone, such as bathing in bleach, ingesting large quantities of metals or overloading on antibiotics. The tendency of skin parasite groups to delve into this type of medical pseudoscience is largely responsible for the established medical community’s continued skepticism toward the disease itself. MORE IMPORTANTLY, SOMEONE COULD GET VERY SICK OR EVEN KILLED.

DO NOT bicker with leaders of other skin parasite groups over conflicting theories. YOU ARE DIVIDING A COMMUNITY THAT MUST STAND UNITED IF IT IS TO GAIN CREDIBILITY WITH REAL MEDICAL RESEARCHERS.

DO collect OBJECTIVE information such as name, address, phone number, symptoms and medical histories of each sufferer who contacts you or your Web site.

DO compile this information in a consistent, unbiased and scientific manner in preparation for submitting it to the medical community for review.

DO work together with organizers of other support groups and Web sites in this common effort. It's heartening to know that the CDC is looking into this, but we don't yet know whether it will result in the official recognition of this disease. Now is a sensitive time in which many in the scientific community are forming their first impressions about the disease and its reported sufferers.

DO THINK STRATEGICALLY ABOUT HOW TO GET CREDIBLE RESEARCH ORGANIZATIONS SUCH AS THE CDC TO CONTINUE CONDUCTING LEGITIMATE RESEARCH AND SEE IT THROUGH TO CONCLUSION. BASHING THEM, PREACHING TO THEM, CRITICIZING THEM FOR NOT RESPECTING YOUR THEORY -- ALL OF THE ABOVE WILL DOOM SUFFERERS TO PERPETUAL MISERY.

[carla]

Concernedwriter, Don`t be concerned .You are preaching to the converted. If you spent some time here you would know that . There`s a little place called Lymebusters that need a post or two from you
Carla

[jano]

Dear Concernedwriter,

While I appreciate much of what you have posted here, I do believe that many of the members here are mindful of what you are saying. Trust me, I have been to many Doctors (even the Mayo Clinic) with samples, thinking that perhaps THEY could tell me what it is. I have learned well, that apparently in DOP 101 in medical school, anyone who brings in samples is delusional.

This is one hell of a disease that I wouldn't wish on my worse enemies. I am now in my 11th year with this and not until last July did I ever realize that there were actually others who suffered from this. This site has been a godsend for me, to be able to communicate with others who have this as well.

I pray every day for all of the sufferers to be able to deal with this and that a cure can be found. I don't focus on how, what, why. I really don't care if it is man-made. I want a cure and if the source can be found to prevent the cause, all the better. I am not into finger-pointing or blaming - that isn't going to help any of us. What is done is done. The bottom line is we need a truly intelligent, ambitiously driven tast force to truly look for a cure and at least, if nothing else, validation that we are not making this up.

[ladycolorado]

concerned writer, i understand you argument quite well. some of it is true. i have been to a chronic disease clinic, where they tend to know more about lymes related conditions. just because something is not in the textbooks, does not mean it doesn't exist. the ones in here, if get good medical care, many times have to wait. meanwhile their whole body deteriorates. my doctor, is an ialds doctor. my bloodwork is definately not normal. i have lymes disease. i also have physical symtoms of something else. i have been ill since september. before ill, was five years last had seen doctors. i do know when something is wrong. my exam backs it up. i have some physical neurological damage, in my lower legs particularily on my right side. i had difficulty walking today. i have had the bullseye rash. if you look in here, and do some research or ask a medical person to do so, you do not see a bleach bath party. our goal is to have relief and to remain functioning, hopefully in wait for a doctor. what we have may not be fatal, but can be debilitating. our goal is to function better, and to bolster our immune systems. if i had done nothing, i would be much worse off. the doctor said my immune system is shot, my skin immune system is shot, and i have some psychical neurological damage. my bloodwork is not normal. when they examined me, my skin is of irregular thickness and texture. if you had a campfire on your arm, would you wait for a doctor or put it out? well thats what the skin pain is like. when the doctor looked at me, i was in very good shape compared to some, because what we post WORKS in here. if it does not, it goes to a section called FAILED teatments. 90 percent of the treatment steps are based on a doctor's help. i know you know something is wrong and you care, are trying to protect us. however, while many wait, we deteriorate. remember that syphillus was once thought to be a psychiatric disorder, but was a physical disease that deteriorated the brain and cured very simply with antibiotics. you will look, read in here, come to find out children even baby twins are sick. many with this when accurately tested have lymes disease, what some medical people are discovering with those like us when the immune system is greatly compromised, things not normally be a problem will be in that case. chronic fatigue, fibromialgia, and even lymes disease was not taken seriously at one time. those of us who see doctors, good ones, find that something is very wrong, our immune systems are weak. we do not advertise products for the sake of financial gain. we are trying to regain peace and normalacy in our lives, and to find medical help, too. but thanks for posting. by the way, things in here are not all "folk" cures, but based on old fashioned pharmacy treatments.

[ladycolorado]

yes have to say, read your article.i liked the local element you put into play, ConceredWriter, saying "hey this is in your own backyard" so to speak. the article was posted on September 4th 2004, so kinda old, and much progress with legitimate doctors starting to look into this and actually examine this and do blood-work is exciting. much headway is being made in Santa Ana California, where the former head of Cigna and world renowned pathologist Dr. Rahim Karjoo is researching this and apparently not underfunded or has poor testing equipment. he runs his own doctor's hospital and another facility. there is much headway coming, and technology is stepping up to the plate. the CDC, barring more delays supposed to investigate this year. i get weary of the constant unresearched spin of the media:" skin parasites, skin disease." its systematic, has much more involved then our skin, which this article and many others never mention. some do, however. it even goes down to the bone. it can cripple if left unchecked.it can impair eyesight, it can deafen. it can impair cognitive function.it lays waste to the digestive tract, and decimates appetite.not all of us have lesions, but can have irregularity in skin thickness and texture, color. it is not fatal, but breaks everything down and compromises the immune system. antibiotics help it, provided they are the right kind prescribed by a knowledgeable doctor. and as far as some scoffing at this being not linked to lymes by some: think about this: lymes disease lowers the immune system greatly, and unusual things can happen when an immune system is lowered.who is to say, without research, that diseases cannot piggyback eachother, or work hand in hand? wounds do not heal well or at all with a low immune system. there are many questions to be answered, just by taking a closer look. i cannot get link up for this article, but for those who are interested in my emailing it to them, please private message me i will be glad to send via my email. thanks guys.