Introduction

[Confused1114]

Hello everyone my name is kimberly I'm living in dover delaware I just joined the site here's my story its not that long lol

So for a few years I've had a problem with what I thought to be ingrown hairs throughout my body.... So I would usually just pluck them over the past few months they were growing out of control most of them i was never be able to pull them out so I researched ingrown hairs for a few nights....as I was doing my nightly routine of plucking I came across a mark on my face that has been threre for a very long time and there seemed to be two "hairs" I could have sworn it was above skin so after hours of not even gettinga grip on eitherof then I realized they were connected some how I couldn't figure out where.as I know can are the actual trail of this"hair" so I finally just touch the hair and out disappeared into my skin and I seen movement under my skin on the total opposite side of my face I thought I had the longest ingrown hair ever so I decide to trace my trail it was like a cooper thread sewn I'm my whole face through my eyebrows looping in circlrs as I touched it I felt my feet tingle and itch I screamed o kept obsessing about it the next day I seen it was in my lips and private area.... So I went to the er while tell lin the triage about this inform hair in my while body it was clenching my neck and she seem out the lines in my neck were so dam tight I patiently waited for four hours to be seen by some aid who asked questions only concerning my mental health ugh...the next day i seem the works starting tupi come put my hands and feet slowly but surely I went to baby from school and it clenched my neck making it almost impossible to breathe heteacher even seen something strangling me I freaked out went home show my moom and she insisted I was doing drugs I got so upset because she seen the worms!so I took a shower and shave where the fiber/worms were tightening and the craziest thing I've ever seen happened fibers/worms just stared shooting out of my skin I spent atleast an houtodr just watching when I layingn my bed it continued my boy friend FINALLY seen it then yesterday I found the clumps that are usually on my feet in my private area.....I'm only 23 and this is so new to me and out all adds up my concentration mood swings my muscle pain headaches its all from morgellons I'm so depressed scared confused

[janedoe]

welcome, sorry you got this mess, but were all in the same boat here. so how did you find this site?

[Confused1114]

Thank you I was researching if morgellons tighten up and it came up on google....this site is great...i felt very alone even though I just realized I had this I couldn't find anyone to just listen my dad believed I was feeling all of this but he thought it was mental because he couldn't visually see it until I showed him my clumps under a magnifying glass I tguess he told my sister shes bee calling and sending research all day I'm feeling a little better but still very scared

[trz103]

Hi Kimberly. Nice to see another person from the area here. I live in Sussex County. I am starting to side that this is a fungal/mold ordeal in my opinion. Not sure why some get it and some dont. Good luck in your ordeal with this, please update with anything you found that works or any doctors that listen to you and try to help. I was asked if I was on drugs and delusional as well.

[Pollyringworm]

Originally Posted by trz103

Hi Kimberly. Nice to see another person from the area here. I live in Sussex County. I am starting to side that this is a fungal/mold ordeal in my opinion. Not sure why some get it and some dont. Good luck in your ordeal with this, please update with anything you found that works or any doctors that listen to you and try to help. I was asked if I was on drugs and delusional as well.

I'm starting to think the same thing. Fungal, definitely. The spores in the air that look like lint, the fact that the skin and hair respond to antifungals. My three year old has a definite yeast infection on her hair.

I can tell you this much, you can't talk yeast with doctors. They don't believe in it, either. You might as well mention Morgellons, because they say the yeast syndrome is unsubstantiated. I have asked three doctors about it and one said it was possible but he wouldn't test me. He said go to a big university hospital that would know about it, and they wouldn't test. So I'm in a big catch 22. I have been feeling a lot better, thanks to the people on this board.

I was searching online about it and found an article about a new fungus, so they do pop up. I will post the link if I can find it again. What kind of doctor handles fungus? I wonder if we're looking for help from the wrong specialists.

I also have a weird symptom that I'm wondering if anyone else has. A bunch of red spider-like veins have popped up all over my body, as well as blue veins that seem too close to the surface in weird places. They don't hurt, but I'm worried that they're going to turn into something.

[tcmgpt13]

Hi Polly,

You might want to look into seeing an infectious disease doctor as far as finding a doctor who might treat fungal infections (if any are found through testing, always a big if with us). Also alternative doctors sometimes are more aware of these types of infections.

I just found this information from a place in LA which specializes in internal medicine but which also employs infectious disease doctors:

Fungal Infections

An accurate diagnosis is critical to the treatment of fungal infections. Our infectious disease specialists are experienced with diagnosing and treating these diseases. Examples of fungal infections include coccidiomycosis, also known as ?Valley Fever?, which is endemic to Los Angeles and easily treated if properly diagnosed, and allergic bronchopulmonary aspergillosis, which is often misdiagnosed as asthma. Our physicians also specialize in the fungal complications associated with HIV, including cryptococcus and histoplasmosis. Several members of the division are actively conducting research and are involved in the development of newer and safer therapies for the treatment of life-threatening deep fungal infections.

usc.edu/health/internal/divisions/infectious/

Also you could check this post which has a lot of links. There is one for locating infectious disease doctors. Also any doctor you are thinking about seeing could be googled by name to see if there are any patient comments about him/her. This post also has links to a couple sites where some doctors have been rated by patients:

morgellons-disease-research.com/Morgellons-Message-Board/general-discussion/4235-finding-doctor-help.html

quote=Pollyringworm;84612]I'm starting to think the same thing. Fungal, definitely. The spores in the air that look like lint, the fact that the skin and hair respond to antifungals. My three year old has a definite yeast infection on her hair.

I can tell you this much, you can't talk yeast with doctors. They don't believe in it, either. You might as well mention Morgellons, because they say the yeast syndrome is unsubstantiated. I have asked three doctors about it and one said it was possible but he wouldn't test me. He said go to a big university hospital that would know about it, and they wouldn't test. So I'm in a big catch 22. I have been feeling a lot better, thanks to the people on this board.

I was searching online about it and found an article about a new fungus, so they do pop up. I will post the link if I can find it again. What kind of doctor handles fungus? I wonder if we're looking for help from the wrong specialists.

I also have a weird symptom that I'm wondering if anyone else has. A bunch of red spider-like veins have popped up all over my body, as well as blue veins that seem too close to the surface in weird places. They don't hurt, but I'm worried that they're going to turn into something.[/quote]

[lindsaykay]

Has anybody tried long term doxycycline? My holistic doctor gave me a Rx for it. She wants me to take it for at least 30 days and maybe even way longer (Rx has 4 refills). Any thoughts?

[Pollyringworm]

I took my daughter to a pediatric infectious disease doctor/immunologist/parasitologist at a large university hospital a few months back. The adult parasitologist refused to see me based on my symptoms. Basically, two different doctors told me I was delusional and I ran out of there before they called social services on me. I wasn't confrontational at all, I only mentioned the crawling, biting and lint. The only thing I can think of is that they've had other people there complaining of the same symptoms and they were already bothered by it all.

The funny thing about it is, this hospital has devoted some staff to researching this disease in regards to the Chlamydia link. It apparently is a chlamydia-like organism.

There is a website that has some research on it. I don't really follow the rest of the site, only the lab research, but here is the link Aerosol Operation Crimes & Cover Up

[skylark99]

That is interesting Polly about the infectious disease doctor refusing to see you (and from your post your daughter, too?).

I also saw a parasitologist, one that actually did examine me.
I explained my symptoms and the progression of them (graphically), but he said that he had never heard of any such thing. I found that particularly odd, as I knew several people who also saw him previous to me, and know for a fact that they had told him the same things that I had told him.

He went to a great deal of effort to not find anything. He looked everywhere and poked everywhere and took samples from everywhere except my scalp, which was my biggest complaint. In the end, I got no lab report -even though I asked for it four times, and at the finish I found that he only tested me for one thing -strongyloides.

I also saw a derm, the same one twice. The first time she took a skin scraping, but threw it away. The second time, she refused to take any scraping at all. Her parting volley was that I seemed anxious and maybe the mental health people could help me with that. My response was that she was wrong, which she did not like at all. She was obstructive, difficult and offensive, all the while trying to look professional and educated. She failed badly, and I think she knew it.

Still, doctors who make mistakes often have colleagues who will back them up or do nothing to arrive at a correct diagnosis when the patient seeks a second opinion. Closing ranks is what it is called in some places. I have had doctors lie to my face, hide information from me, refuse to make appointments to consultants and mess me about with getting copies of my medical records. I always encourage people to write to any doctor and request copies of all their medical records, and to CC notation at the bottom that a copy is being sent elsewhere, whether a lawyer, a primary care physician or a support worker -anyone. To be proactive is our only defense against shoddy medical care, I think, yet somehow when we chose to do this and go to the effort to be involved as partners in our own health issues, despite all the hype that patients should take some responsibility for their health matters, we are often accused of being "anxious" or hypochondriacs.

I do not understand how these people justify their enormous salaries and the respect they feel that they deserve. The days are long gone when doctors can expect their patients to bow and scrape in deference from a base of lack of knowledge. The internet and many libraries make a wealth of medical information known to everyone for the asking or looking.

I am aware that the dermatology forums on the internet had a rash of posts about patients showing up in 2006-2008 with odd skin problems, small lesions, debris coming from the skin and constant itchiness and irritation. They were all asking each other what the cause might be and how it was that so many with these unusual symptoms were suddenly coming to their offices. No one in the forums had an explanation, but there were a lot of discussions about it all. I had read them because I used to subscribe to medical journals on line and other medical sites to keep up with new research and studies since leaving school. It was on some of these sites that the forums were located, but only members could read them.

I do think that some doctors know that something is going on.

What you and your daughter have experienced and how you have been treated, and the assumptions that have been made is very unprofessional. Insulting, even. You and your little girl certainly deserve better, especially from well-paid professionals with an arsenal of diagnostic tools at their disposal. And when medical people unqualified to make such diagnoses, jump to a clinically unsubstantiated mental health conclusion, it is no wonder more and more patients do not trust them.

I do hope that you find support and understanding and helpful suggestions here at the mdr forum. You are certainly not alone in your experiences, many here have had the same, and understand and feel empathy. I am glad that you found us and decided to become a member.

[skylark99]

Lindsay--

I took doxy for about 8 months. I began that Rx when I had had Morgellons symptoms for about 8 months.

For two weeks I seemed to be getting better, then the 'crawling and biting' sensations got much worse.

I have recently read on-line articles about doxycycline liver toxicity, when doxy is taken for long periods of time, or when patients prescribed doxy or other tetracycline antibiotics have existing undiagnosed liver abnormalities.

However, doxy is not the only drug/medication that has been implicated in liver problems associated with long-term use, or further liver damage in patients undiagnosed with liver issues.

Had I known that two months into the course of doxy, I think I would have stopped taking it. I have recently been diagnosed with some liver problems, whether from the doxy, I am not sure; no follow-up was ever offered, no further tests and no advice given to me about it.

What has happened to my liver may also be from long-term use of acetaminophen (paracetamol), or high cholesterol levels, or something else; there are many possibilities, none confirmed, and I am too worn out to pursue another round in the boxing ring with another doctor.

A good post, Lindsay, always good to see members doing their homework.