Scared senseless (I mistakenly posted this in another area)

[Newbiewilliam]

my name is william, i am 29 years old and i think i have morgellons.

right now i have the feeling of crawling all over my back, chest, head, and to a lesser degree legs. I have black and silver hairs coming out my body in some places, and when i tweeze them out they have like black specs attached, or black specs come out. I also getr black specs on my skin, and tiny red dots all over my body, not noticeable. I recently looked at the specs, and a hard thing i took out of my leg under a microscope and it look similar to pictures i have seen online, and the symptoms are similar too.

This past may or June I started getting this crawly feeling and intense itching and black specs with the feeling of being bitten, pain in my right shoulder, as well as red spots on my body and alot of what looked like ingrown hairs that i took tweezers to and thus had sores on my body. they were small enough that nobody can see them. At the time i went to the doctor, many doctors and was diagnosed with Scaies, body lice, pesticide poinsoning, and was even told teh crawling feeling was psychoscmatic. I woudl take samples to people, from my skin, even out of my temporary colsotomy bag, no one woudl look at them. I went to an er many tmes, but once i even went because i coudl see black things under my skin, theyy did not seem to care. Anxiety he said due to scabies. I did not know what to believe. I had been very tired and fatigued for some time, i figured it was teh anemia i have.

I had just had surgery in April as they found dysplasia in my colon and i had Ulcerative colitis for 11 years (removal of my colon, the 1st part of a 2-part surgery), had been spraying my aprt for bed bugs < i was doing it personal with some industrial strentgh stuff and definetly used too much> and due to teh uc had been using prednisone for years.

In my search for something to fit my symptoms, i was worried about everything from sand flys to stap infections, i turned to the website and found pictures and the MRF website. While my symptoms were not as extensive as someof teh pictures i became worried about having this. I would ask doctors about it and they woudl say that it is very rare, or not knwo about it.

i began taking cipro for a bacteria infection<more on that later> and acyclovair because years ago i had been diagnosed with shingles and some of teh feelings were the same, as well as permitherin for scabies, which was part of the pesticide poisoning as i used way too much of that too, i then used different staeriod cremes for the sores, they worked some and benadryl for the itching and creepy crawling feeling. I was in a rush to clear whatever i had up as i had to have another surgery in July. The perimethern hurt really bad when i put ut on, like a million bites, and i swear the first time i put it on it looked like things were moving and i woudl try and pick them out of my skin. The week of my second surgery i saw an infectious disease dr to clear for surgery, i asked about morgellons, he said the weird red lines on my skin was viruses and that morgellons he had heard of but was very rare, and that i did not have scabies at that time.

That week of my surgery I was ok, no itching, no creepy crawly feelings, no more black specs or haairs, but i did shave all teh hair off my legs and chest, and got a haircut alot shorter. so had teh surgery discharged in 3 days, and back in the hospital 3 days later, with a partial blockage, while i was there they found, after my begging for a test, a bladder infection. i was upset, this was my 3 positive test for a bladder infection, luckily the dr did some more research on my result, i had a MERSA staph infection in my bladder. so I took a 14 day tract of vancomycin and it cleared up. That was done early last month, 3 weeks ago at least. i mention this because that whole time and the weeks prior <roughly 1 month total> i was symptom free. i began to chalk it all up to pesticide poision and a mental issue with the bugs. I moved apartments and was living very nice, until i began to have some problems with my stools and skin on my buttocks and around my groin, but my dr gave me cipro, again now for teh 3 time this year, and a creme that has been working on teh rash and itching. i also increaed my metamucl intake and immodium. things were back on tract.

Then last week i started feeling the formication <creepy crawly feeling> and what felt like fleas jumping off my legs. But i was teh only one in my home who felt it. so i still had some lice wash used it and my skin felt better for a few hours, but i started to see alot of black specs, and the prvious week i had pulled this weird crystal like thing out of leg. put them both under a microscope, to my horror they looked like some stuff i have seen online as morgellons. my primary admittedlty does not know what to do, he doesnt say i am wrong, but he has no clue. Infectious disease dr's will not see me, my derm already said it was in my head, even the one who helped me for the mersa. I have one dr pending, at UM. we will see. i have read that some lyme disease medications can help.

i am very scared there is so much info out there, scary pictuires of people with lesions on their body. I am not there, but if this is progressive & me only being at maybe the 4 month at the longest have alot of painfully scary and uncomfortabel thinsg to happen yet. the loss of vision, worms and bugs coming out of you hairs out of my eye and issues with my brain.

I am back on ayclovair as it may have helped last time, i do not know, and take benadryl-doesn't help, right now my most annoying feature is the formication. i am scared that i have this disease/syndrome and that i will wind up like some of teh pictures i have seen. and there is nothing i can do about it. i woudl like to have a dr helping me with teh symptoms. i have never been a big person on herbal remedies, i am in south florida and so far the only dr i have seen that is morgellons literate or might be able to help is in tampa dr. cheryl reed. definetly considering seeing her, and going to a psychiatrist to see if i have delisonal pariositis, if nothing else to see if risperdone can help the formication. but i am scared of the rest that has not happened yet, and that my kids and wife can get this.

ps: the formication seems to be more bearable if i am not thinking of it. but obvioulsy this is all i can think of right now

[Sadsack]

William -

Our next support group meeting in Tampa is on 9/27 at 2 pm at Dr. Reed's office. I will post this information again about a week before the meeting.

In the meantime, try to stay calm and not let your fears run away with you. Many people do not have sores or lesions. And many of us are worse in the beginning than we are later.

If you can, try to adapt to natural approaches. It seems that some get better with RX meds, but the majority of people who improve and continue to improve over long periods of time do not use medications (unless absolutely necessary).

Look through the treatments described here and gradually work yur way into an effective regimen.

The ONE thing that seems to work for everyone that I can think of who has tried it is FarInfrared. It is seldom enough - other things need to also be done - but I've never heard anyone say they used it and it didn't help.

Good luck and let us know how you are coming along.

SS

[Newbiewilliam]

thank you for answering my post it is greatly appreciated. what is FarInfrared? i googled it and saw different companies advertising it, from clothes to treatments that are like 800+. <which is out of my ability to pay>

i made an appointment with Dr. Reed and plan on attending the meeting you mentioned. luckily my job is closed the monday after so i am able to make the road trip. i am just hoping for some assistance and direction in dealing with the symptoms. I have looked at the posts and there is just SO much information i woudl not know where to begin. Some of it is also contradictory, for example i read that if you have morgellons cut out caffine, but i also read that reducing formication can be helped by caffine. Thank you again.

[Sadsack]

Hi, William -

I am glad you are able to make it to the meeting. There is another couple from FT Lauderdale who comes.

Yeah, Far Infrared can be had in different forms. If you don't have the money to purchase anything, you might try to find someplace near you that has a FarInfrared sauna (pay as you go). Some have found bedding reasonably priced online. I have a FIR pad that I paid $400 for almost two years ago, and have been sleeping on every night since.

I will tell you that I was very sick two years ago, but have made a great comeback. I was one with hundreds of lesions, all of which have been gone for over a year and a half. I hardly feel any biting or stinging, and almost never any crawling. I can easily live with the symptoms that I have left over.

I eat as healthy as I can (organic is best) and take lots of supplements, including Opaline Dry Oxycaps Opaline Solutions.

I would recommend you try this protocol, which I copied and pasted from Lymebusters (it may be on this board somewhere as well):

"When my wife and I were sick with Lyme and
Morgellons, we were not sure what bacteria, fungus,
yeast, or fill in the _____, came first, so I decided to
go for the mow 'em down approach with the
most powerful herbs that we could buy.

The most important herbs, depending
on degree of 'herxing' are:

Cat's Claw, Teasel, Olive Leaf Extract,
Seven Forest Herbal formulas for
Spirochetes ,Triphala, and Sarsaparilla.

Also:
2 Kyolic Garlic formulas (Immune and Antioxidant),
Pau d'Arco, Folic Acid, NAC(Cysteine), Ionic Silver,
Oregano, and Grape Seed Extract.

Also Artemisinin if you suspect Babesia.

For Sanity:
Aromatherapy: Menthol crystals diffused
into bedroom & office- calming to nerves
and whatever itches like hell.

Lifesaver: Kleen-em-Away (enzyme cleaner)
or equivalent.

Each item has a purpose and some have several.
Some are antibacterial, anti-fungal, and a dewormer.
Others are for taking care of the die-off of bacteria,
yeast, fungus, and worms and flukes if you have those.

We had neuro-Lyme symptoms to the extreme.
About the only thing we didn't lose was our sense of
humor- although we mostly laughed at ourselves.

I feel like our present good health is due to attacking
all infection and infestation at the same time-
because they reinforce and sustain each other.

Knock out one and the others invite another.

Until the answers are revealed through research, if
ever, of what attacks first and what follows, that riddle
may not make a difference in how you treat your health
problem- specifically Morgellons, which seems to
encompass many infections and infestations.

As a gentle reminder Cat's Claw helps over 200
known medical conditions, and for my wife and I
it was as close to a silver bullet for the bad guys
as you could find.

Blue Skies..........John"

SS