Questions about Diagnosis

[ellentk]

Hi,

This is my first post. I have some questions about the best way to get a diagnosis that will determine if I have Morgellon's. I put a q-tip that I used to rub some black flecks off my skin in a baggie. The flecks looked like short, straight fibers when they were on my skin, but now they are smushed into the q-tip. Also,the q-tip was not sterile; it had been in an open cardboard dispenser in a dusty and occasionally moldy environment. And, my skin had not been washed for several hours before I applied the q-tip. Can the q-tip be used for a diagnosis?

Upon removing the flecks last night, my skin became red and looked and felt irritated. I put on some antibiotic ointment and today, it feels less irritated and does not look irritated (at least through an ordinary magnifying mirror and my maganifying eyeglasses) and there are no more black flecks.

Would it be best to stop using the ointment, wait for the flecks to come back and then go to a doctor or should I go immediately with fewer symptoms? I am leaning toward taking antibiotics, and the sooner the better, from what I've read here and elsewhere.

Speaking of doctors, I have Carla's list of doctors and live in the NYC area. If anyone can share their good and bad experiences with doctors near me, here or in a private message if that is appropriate for this group, I would greatly appreciate it. I like my dermatologist, but I don't know how experienced he is with Morgellon's or what his attitude to it is.

Thanks for any advice.

Here are some details about my story:

About a week and a half ago, my eyelid felt irritated and I noticed small black flecks on it. But since I use powdered black eyeshadow, I thought I hadn't removed all of it and it was irritating my sensitive skin. I blotted my eyelid and the flecks came off, but removing them irritated me more and to prevent an infection, I put on a little bit of Altabax, a very strong topical antibiotic. It burned on application but the next day, the irritation was gone, and I forgot about it.

But during the last few days, my eyelid began to feel irritated again. When I looked at it, there were no black specks, maybe a thin white line. Last night, the specks were back so I looked more carefully with a magnifying mirror and got a Q-tip to remove them. I had to drag them off and the process was painful. I immediately thought of Morgellons and put the Q-tip in a baggie, put some more Altabax on my eyelid, washed my face with an antimicrobial, antiseptic skin cleanser called Hibiclens, and put some in my shampoo too.
This morning, I was less irritated, the flecks have not come back, and I put on some polysporin.

Although I have not noticed the black specks until the last few weeks, my eyelid has been irritated over the past few months.

Until about a month ago, I have had a lot of mold in my apartment, due to a leaky pipe in the bathroom, which is now fixed. During that time, I had a lot of hives, as I am allergic to aspergillis, which has been found in my apartment, although I didn't have it tested this time. I also have occasional mold outbreaks in my bedroom, which has rotted one of the windowsills near my bed.

Based on my not having many hives since the bathroom repair, I believe that the mold situation is mostly under control. But it's been raining practically nonstop in NYC, the humidity has been high enough to grow mold, and although my landlord has done some work on pointing the brick outside my bedroom and fixing leaks in the terrace above it, there are occasional leaks that lead to wet sheetrock.

Ellen

[jonsi]

Hi Ellen!

Welcome to our family! I hope you will find that you do not have "Morgellons", but the black specks and hives sound suspect.

I don't think you are going to find a doctor that will say "You have "Morgellons"". There are several explanations for this. Check out "chockets" posts about her involvement in the morg/kaiser study she is involved in. A nurse told her that medical doctors are looking for already identified diseases and treatments. I doubt any doctor will look at your q-tip sample even if they ask you to bring in samples at the time you make your appointment. It is worth a try...? I knew my dermatologist personally, his medical partner in his practice was married to my husband's partner in my husband's orthopaedic practice. Anyways, he said I was DOP without looking at any of the samples he told me to bring in. (now I'm raving, sorry!)

Do not be surprised if you are diagnosed with "DOP", delusions of parasites. I think ALL of us have received this diagnosis! It is a slap in the face to all of us because we KNOW we are not imagining any of this. Yet to be told by a medical professional that we are making this up is deflating and can make one take a step back in finding one's path to better health.

"Morgellons" isn't in any book. There is no one treatment and most treatments come from places like this board, from those of us who are experiencing it.

I have chosen a homeopathic/natural medicine approach and also try to eat the best organic foods possible. However, there are a lot of us that have chosen the western medicines when they are fortunate enough to have medical insurance and the physician who is aware of "Morgellons".

I would buy some Dawn "oxy" dish soap and start using that all over your body. It seems to break down the fungus that helps spread the "Morgellons". I believe this is in my hair also and use full strength medicated Selsum Blue shampoo. These are listed under the treatment steps here on this board.

I'd also get an ionic air filter and treat your environment.

Good luck.

In the white light,
~jonsi

[megluth72]

I have to agree with Jonsi here, more than likely you won't get a morg diagnosis. I think we would all fly to NY if you did to get a diagnosis for ourselves. I too have been labeled d.o.p. Why even last week a wound specialist (that I banked on figuring this out for me) said I have cutaneous syphilis without any kind of testing or lab work. Imagine hearing that one! It's not even likely, nor plausible. I was really upset, but it just goes along with all the other b.s. diagnoses I've received. At this point I think everyone is just trying to relieve the symptoms and maintain control while morgellons becomes more accepted in society and a treatment can be established.

That all being said, just be careful who you see (or don't waste money on some dr.s) and don't get discouraged if they chalk you off. We're here for you and we'll all get through it together.

Welcome to the family! You will love it here.

[ellentk]

Hi Jonsi,

Thank your for your advice. My plan is not to mention Morgellons, but to ask for an analysis of the flecks. If I arrive with the specks, the doctor can actually see them. A friend may also be able to get a lab analysis of my q-tip, as he's an environmental consultant and often sends samples to labs. I guess the downside is a lab is likely to identify them as "unknown." But it sounds as if Dr. Harvey has found infectious agents in his tests, so I think it possible the right lab will identify something. Thanks for helping me think this through. And thanks for briefing me on the attitude I might find if mention Morgellons.

How long have you had Morgellons? How is the homepathic/natural approach working for you? My inclination, from what I've read, is to try Dr. Harvey's protocol. And I'll get Dawn "oxy" and Selsun Blue, and some of the other things I've read about here.

I do have a good air filter.

Ellen

[ellentk]

Hi M72,

Thank you for sharing what you've been through. I may go to my dermatologist when I have the flecks, but I'll also shop on the phone and find a doc (maybe on Carla's list or on Dr. Harvey's recommendation) who will use his protocol.

I'll keep you guys posted, especially about any good doctors I find.

Ellen

[dragonfly1]

I was diagnosed with "Morgellons" by an infectious disease doctor in Florida. It was November 2006. Of course this was after seeing 6 doctors prior to her. I got DOP,skin fungus,bacterial infection and stress causing it lets see also mrsa or sars...........etc.

[dereck72]

dragonfly...where in fl? I moved here not too long ago. ellentk, what part of NY are you from? I am from New Rochelle and moved about a year ago to FL...if you're in the area of westchester maybe I could help you find a dr. I had one that was treating for lyme symptoms that was great!

[Natalie]

Yes Dagonfly, what area is ID doc. working in? My son John is in Largo. He had fungus patch on head, rash, belly ache and 2 different cysts growing, cellulitus. They treated with anto biotics but he is still sick.

My name is Natalie, Im in Mass. area. I dont have a good doc either. I can con him into some meds and that is just outregeous to say but I do what I have to do to stay alive. A crazy thing my kids say is, if mom ever robbed a drug store you know shell be taking the emycin, diflucan and flaggyl, NOT the oxycotin! I know my humor is dark, sorry folks. Im desperate.

ON the Aspergillus. I thought I had that, was even participating on a site forum. They didnt even want me! LOL! Made me leave cause I presented more problems than they knew about!! Ya know youre up **** creek when sick people dont even want ya!!

I am so laughing at myself. Its 4 am, Im itchy and tired but laughing, so Im happy. Have a peacfilled day folks!