Suppose you have 10,000 people who have self-diagnosed themselves with a mysterious disease that causes horrible itching, and makes you think fibers are emerging from your body. In many cases they have been diagnosed as delusional, and have been unable to work with their doctors in finding effective treatments. These people have very frustrated, and angry at the medical system.
Suppose then an organization comes along, and tells them that they are absolutely not delusional, and they actually have a “newly emerging infectious disease“, and if they are “given appropriate antibiotics long enough” it will “resolve most symptoms“. and that “the treatment presently most successful is antibiotics.”
Two members of this organization even run a clinic to sell these antibiotics for “long enough“, but their services are very expensive, and these two people are just about the only people in the country who sell this treatment, so most of the sick people either can’t afford it, or can’t travel to see them, so these two only sell their treatment to perhaps 200 people out of the 10,000 who self-diagnose.
So what are the other 9,800 going to do? Many of these people were diagnosed as delusional (in addition to whatever other physical symptoms they have), they then self-diagnosed as having “Morgellons”, after reading about it on the internet. They then read on the internet that “Morgellons” can be effectively treated with antibiotics.
So it’s quite obvious what self-diagnosing people are going to do. They are going to self-treat. They are going to buy antibiotics, and they are going to take them. They are most likely going to harm their health in the process.
Sure, antibiotics are prescription only, and with good reason. But creative minds can find them on the internet, or other places. Take this recent thread titled “how do u get antibiotics for so long“. Some of the answers were:
Find a MD to prescribe tetracycline for “ROSEA” then you can get on it long term.
Most women have it. The MD would not prescribe ATB’s for me for LYME or Morgellons,
but said, OK, you have Rosea and I can do it for that.Also, from mexico, I order Flagyl (NAME BRAND) which fights protozoa and used in ob/gyn settings for chlymadia. Tetracycline and Flagyl [Metronidazole] work together and compliment each other.
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medsmex.com
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Here are a couple of more sites for antibiotics without a script:
http://www.aclepsa.com/
http://www.drugdelivery.ca/
I have ordered from both places, you should just do a search for the type of antibiotic you are looking for, there are a bunch I found on Google.
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I talked my old doctor into prescribing doxycycline for two years based upon Dr. Garth Nicholsons treatment for CFS, I have FMS. I took it for 1 year 9 months. If helped a lot but hard on stomach. All my symptoms are back.
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and in another thread:
I haven’t tried [Tetracycline ] but I know I can get it at the Feed Store (morgellons pharmacy)
Note that the “Feed Store”is referred to as the “Morgellons Pharmacy”, because you can buy antibiotics at the feed store that are intended for livestock. This is something that is well known in the chronic Lyme community, and has hence been transferred over to the Morgellons community. Anti-parasite drugs such as ivermectin can also be found at the local feed store, and are also consumed by people who think they have Morgellons. You can buy some antibiotics (like Ampicillin, sold as “Fish Cillin”) at the pet store in the mall. You can even get these antibiotics on Amazon.com, see also: “Fish Cycline” (Tetracycline), “Fish Zole” (Metronidazole) and several other types of “Fish” antibiotics. Read the comments, nobody seems to be buying it for fish (or birds, if you want Sulfamethoxazole)
So what you have here is a lot of sick people who do not know what is wrong with them, who have somehow self-diagnosed themselves with a disease that practically no doctor thinks is real, and then are self treating themselves with a treatment that almost no doctor would recommend. They find ways to buy these drugs, either from Canada or Mexico, or they take antibiotics nominally labeled for fish.
It’s a major public health problem. Self-diagnosis and self-treatment (for months) with antibiotics for these 10,000 people means:
1) Their actual conditions, physical and/or mental, are going untreated
2) They will suffer from side effects from the antibiotics, possibly serious, which will add to their sickness, further complicating correct diagnosis, as they are taking these antibiotics covertly.
3) They increase their risk of developing antibiotic resistant infections, such as MRSA, and contribute to the overall growth of these “superbugs”.
Sadly the Morgellons Research Foundation, the New Morgellons Order, and Oklahoma State University are greatly contributing to this problem by promoting antibiotics as a treatment, before anyone has even discovered a disease.
Related Links:
http://aquaticpath.umd.edu/news/#anchor14215930
http://www.defenselink.mil/news/newsarticle.aspx?id=43579
http://www.cbc.ca/news/story/2002/07/18/fish_antib020718.html
http://abc.go.com/primetime/accordingtojim/episodes/2007/11.html
It is good, Michael, that you are bringing out the “big guns” now. Many of us watch from the sidelines thinking this is all very interesting, but it doesn’t affect us personally. But, no, the appearence of antibiotic resistant disease organisms in the environment is a threat to us all and our children. The utilization and ingestion of large and repeated doses of antibiotics is well known now to develop resistant Salmonella, E. coli, etc., and we all become at risk. The unscrupulous practioners and pill merchants who ply on the unfortunate suffereres are now able to cause us all harm, not just the misfortunates. And the folks who dose themselves selfishly and unlawfully with all these antibiotics should take pause and think about their impact on the other humans who share this earth with them.
The number of people who think that you can treat viral diseases with antibiotics is astounding on its own. These fishpill poppers are just one step worth of crazy beyond that.
Please show me where and when OSU has openly emphasized antibiotic therapy. We aren’t even doing clinical trials.
Jace, it’s Wymore’s tacit approval of Stricker and Savely. He said:
It’s quite obvious who and what what he’s talking about. He said this on OSU letterhead, hosted on a OSU site, and his program has been approved by the OSU-CHS president.
http://www.healthsciences.okstate.edu/morgellons/docs/Wymore-position-statement-2-19-07.pdf
Let’s hear Wymore denounce Stricker and Savely, then I’ll retract my inclusion of OSU as being part of the problem.
Someone needed to stop this before it made it this far. The crazies are taking over. Yeah, there, I said it. Somebody sue me.
I respectfully disagree. I have never heard him or anyone else at OSU specifically approve of those people’s tactics. I do not recommend them personally because they have not proven a cure or even consistent improvement. I know up close and personal the dangers of antibiotic resistance and wouldn’t recommend long term use unless it was a proven solution. As a matter of fact, I’m sure he was talking about the physicians who have been contacting us wanting to know what they can do to help their patients. I’m getting almost as many calls from physicians or their nurses as I am patients these days. Things are changing. OSU would not publically denounce any physician as that is extremely unprofessional, so you can continue to label us a part of problem when we in fact, are not.
Perhaps “denounce” was too strong a term. Perhaps Wymore could simply clarify his position on long term antibiotic treatment for “Morgellons”, in light of his statement that he applauds such things.
Things like this might contribute to the impression that Wymore does not disapprove of the actions of S&S
http://www.cherokeechas.com/img/sf030207.jpg
… in light of any contrary statement.
Nice picture. He was at a conference in San Franscico that apparently they also attended. It’s not unusual to have dinner with people you know while at a conference. It doesn’t mean he is endorsing their protocol.
You’re kind of reaching with these statements. You are reading WAY too much into it. Have you never had lunch or dinner with someone whose actions you disapprove of, but still like and respect on their own terms? Not to mention a picture like that shows nothing. It’s just a picture.
Why are you fighting so hard on this one?
http://www.healthsciences.okstate.edu/morgellons/research.cfm
Unfortunately people read this as “Antibiotics help, and you have to keep taking them indefinitely”
Sorry to continue to argue this point, but I believe that statement says that antibiotics do NOT help, because if they did it would go away or at least be relieved for some length of time after initial treatment.
We can’t help what patients believe.
If Wymore doesn’t mean what he is saying, he needs to select his words more carefully. When dealing with people who believe that they have Morgellons, we are not dealing with normal people. Therefore, extra care needs to be taken when one is expressing himself. Personally, I don’t think that’s possible because the “Morgellons Doctors” and “Researchers” are just as screwed up as their patients.
Tall Cotton
Suppose a doctor said, regarding arthritis, “NSAIDs seem to help some, but if they are stopped the symptoms come back”.
Does this mean that NSAIDs do not help arthritis. No, it just means they don’t cure arthritis. Still, millions of people take NSAIDs every day for their arthritis.
So when a sick person hears Wymore say: “Antibiotics seem to help some, but if they are stopped the symptoms come back”, then what they understand is “if I take antibiotics, I will feel better, but I will have to keep taking them”. Since they can get a one-month supply of Ampicillin for just $20 at the local pet store, then why would they not do this?
What they get from Wymore is:
– I believe you
– You are not delusional
– I’m looking for a cure, and given time and money it will be found
– While you are waiting, you can take antibiotics to feel better
And yes, you can help what patients believe. In fact you (at the OSU) are greatly influencing what patients believe.
I just want to take a moment to tell you that I never wanted to return from a trip to rural NY last winter holiday with my 4 and 6 y/o to return feeling like a cross between Meryl Streep in Silkwood and Pigpen from Charlie Brown.
Honestly, I’m so caught up with singlemotherhood la la land that I had no idea that anyone was complaining about “bites.” I have a very high tolerance for pain, but my doomsday was so specific – after a hot shower at dad’s (warm winter, farm animals, cats, dogs, filth, dead deer heads, untreated water had never bothered me previously) my face was on fire and the next day I looked as if I had a body chemical peel.
The horror continued and suffice it to say that after several visits to the dermatologists for razor like cuts in unattainable places with very good insurance and still no answers after 8 weeks, I started googling after throwing out almost all of my prized Calvin Klein home linens and sleeping for 45 mins in a bathtub and losing 30 lbs in as many days. I was horrified to find the common elements with what I would previously call freaks with a disease not on the books ! I was not going to be some patient zero – not me.
Well, I have Chronic Lymes and CD57 of 28 and am still battling this coinfection with a name from some old english literature….I’m as skeptical as all of you and probably 10xs more – I’m from NY and burried 22 people after 911 and was still jaded and proof oriented.
I cannot deny the fact that I am joined to many strangers who experience what I am experiencing and I still pray that i wake up and it was just a nightmare, but when I do, I will be on your site…..I just don’t believe that it will be in this lifetime, but I will get better. I’m a jaded NYer who will fight for my health and my family.
M
Melissa J, I’m sorry for all that you’ve been going through. Concerning the 30 pound weight loss in 45 days, was this despite the fact that you were eating? Thank you, Smileykins
I’m sorry, I’d misread that you’d said 30 pounds in 30 days.
When I first fell ill, I went into a strange state of survival. I eventually had to force myself to eat, but it was a struggle.
When I finally stopped going to the dermatologists, my friend’s brother (MD) brought me in for tests. The labs told a bigger story, but the doxycycline worked wonders until I went off. The point is that I hate pills and didn’t even take my prenatal vitamins and juiced and ate well instead. I didn’t want the meds to work because I preferred the dermatologists topical treatment…if it worked!
I cannot deny the fact that the pills that I loathe are what has taken me out of the crisis. I’m on the fence. I’ll do anything to get better because I have a 5 and 7 y/o. I’m all they have – literally. We lost family to 911. I have a good life here. I have no reason to know any of you or be joined by this freakish whatever you want to call it. It is what it is and I’m too social and shallow to want this in my life – truth be told.
BTW, after I took the meds, I put most of the weight back on. Now if I could wo again the way i used to- I think I’ll go for a bike ride right now 🙂
The jury is not out. There are 2 schools of thought even with Lymes. I would love for this to be a figment of my imagination…i’m still waiting. In the meantime, don’t forget about the Red Cross and the cost of screening blood back in the day when AIDS began. I audited major pharmaceutical co’s and insurance co’s (Pfizer, NY Life, etc) for the largest audit firm in the world. It’s all about the money and the books and off label versus industry standard. It’s much too big for me to contemplate knowing what I know about business. On a much smaller scale, I just want to be healthy, happy and able to raise my boys to become men. I’m just one gal trying to stay afloat:)
I really didn’t want to post here originally, but honestly, we have to look at the big picture as well as the individual cases. They are humans with jobs and families. Let’s be compassionate.
Melissa
One more thing. I haven’t been to an MD except the derm. and the OBGYN at the best hospitals – Mount Sinai Manhattan and Columbia Presbyterian also in Manh.
I had some adult acne which only cleared up on Minicin (sp.) I don’t have to self treat, but when I had some brain fog and was in a power position, they tell you to take a pill. I drank coffee and worked out.
Now I am in FL and the quality of care is something to be desired and it took 2 months to diagnose the Lymes (2 visits to Holy Cross and 8 trips to the dermatologist). They knew that I was dealing with something – I have had the same insurance since ’92 and this was not a manic episode….:) I wish!! I had to take down my Christmas decs. and organize my home not run back and forth to the docs.
I trusted my God given instinct about my brain and my body. I know what I know about ME and my situation. When I had no answers and was desperate and found a bunch of strangers talking about EXACTLY what I was experiencing during this hellish nightmare, I thought, God, what did I do wrong this year to share these bizarre symptoms with these strangers. I was specific in my request to find relief. Products that smelled funny and came from out of the country brought relief. Other products called this and that from Tenessee that I spent LOTS of money on did not work. I cannot deny the obvious results even if they were labor intensive.
Getting better takes work. Taking pills is easy, but takes its toll. I want to be better without antibiotics. I have a VERY conservative insurance co. who is also my employer. Guess what, they have approved EVERY Rx except for the very risky 30 day dewormer which is usually a 3 day dewormer. I chose to go to Whole Foods and organically cleanse.
I don’t want my money going to the reps at …..I want the answer in a box with a ribbon for Christmas!! Any takers:)
Lighten up and give the sufferers a chance to prove the naysayers wrong. We have enough going against us these days:)
Let’s give peace a chance and agree to disagree until some mad scientist finds out exactly what is wrong. You will all feel bad if you end up in the office asking for antibiotics yourself because of some unusual nonhealing situation.
This from a gal who read the book on how bad they are for us….It is the fix that is working right now.
Perhaps really paranoia.
I am an older med student and I think a pretty good judge of character in addition to having a background in counseling psychology. I am all for skepticism on a *scientific* level, yet I think we need to consider the possibility that people are suffering terribly from an infectious disease.
As a thought experiment, imagine that you are among the first people to develop a set of symptoms that are truly miserable, yet every doctor you see essentially tells you that it is all in your head. Is this the way we want to treat sick people? It seems to me that when dealing with patients on an individual level, we ought to give them the benefit of the doubt. As my professors are fond of saying, even cranks get sick. When we reject caring for the patient as a person, we reject caring for the patient. We start to treat diseases rather than people, and that is a kind of medicine I would just as soon not practice.
A diagnosis that includes an element of delusion is not a rejection.
I’m not saying all doctors are wonderful people. But after 20 doctors tell you the same thing, is it not likely that some of those doctors actually cared, and looked at their skin?
People need to be treated as individuals, that’s very true.