Caught between denial and violent opposition!!!!!!

[bitfuzzy]

Hi all,

Please excuse any familiarity but I have been lurking around the forums for a couple of months now and want to say a big THANK YOU to everyone for the pictures, descriptions and emotional outbursts - all of which have given me a renewed faith in the human crawl (I'd say race but we're probably all too tired to be running anywhere!).

As my title implies, relating to the three stages of truth, I am definately caught between the first two and waiting for stage three to kick in! Here's my story -

I had a couple of spots on my face that got infected so I went to the walk in centre and was prescribed fluoxillin (sic) and fuslin cream. Needless to say that neither worked and, I would say, the cream just made things twice as bad. Added on to this that I didn't ever feel hungry and was filling myself up with coffee just to keep going, I was getting to be a poorly bunny. A trip to London and visit with friends had me going to a walk in centre there where I was prescribed Augmentin (500mg amoxillin, 125g acid, 2mg salt). Thankfully that worked and my face started to clear up. I was really good with my diet, lots of seeds and nuts (which could be ironic as you will see), green tea (no sugar - yuck!) and lots of sleep. About a week after the antibiotics were finished I had another sore spot appear just by the scar tissue of a previous one. These things appear originally as 2 small black dots on the skin and I recognised them round my fingernails too. On top of this I started to feel as though I was 'full up' in the back, if that makes any sense and generally feeling worse and worse, in spite of the healthy living malarkey. Anyways, my folks came to visit at that time and my ma suggested that the burning, pulling, crawling sensation could be shingles as she had had one on her back and could relate to my description of how they felt. I looked up online and discovered that the herpes zoster virus could use arginine to develop. You've probably twigged that arginine is found in seeds and nuts!!! A bit more investigating led to pseudomonas aeroginus (sorry about crappy spelling!) which also uses arginine to grow and, more interestingly perhaps, thrives in jet fuel!!!

Faced with symptoms that could be explained by something so straight forward I took myself to the doctors practise where I'm registered and made an appointment. As someone who really doesn't like going to the docs I didn't have a doctor that I had seen regularly but decided that whoever I did see would become my doctor and help me get sorted out. I thought that if I didn't mention anything about crawling sensations or strange fuzzy hair growing on my cheeks that I might escape the DOP stigma. The doctor I saw was quite young and a woman so I was secretly hopeful of at least being listened too. The appointment was going quite well, so I thought, and then she leaned forward a bit and said, 'Do you think you have special powers?'. My poor brain could not comprehend through its shroud of fog what the hell she was talking about and I must have looked completely gormless! Turns out a 'friend' had rung the surgery and said they were worried about my mental health because I had holes in my face and had become obsessed with conspiracy theories!!!!! I hadn't seen this 'friend' for over a month when I went to the docs, and had been to the London docs and had a full course of anti bs in the meantime, talk about a sinking heart!!! I've been doing a degree course in the social sciences and I was well aware of the power of labelling theory and how difficult it is to lose a label once you've got it. She wanted to send a community psychiatric nurse round to judge my mental health and I was mortified. I told her that I had bought 4 sons up on my own for the last 13 years and deserved to be a bit 'mental' but what about the sores that kept appearing? I went away with some more fuselin (as obviously she didn't hear me saying that it made matters worse the previous time) and another appointment for 3 weeks time.

Phew, this is going on, sorry!!! Anyways I went back last week and no mention was made of mental problems, thank the stars. I said that I wanted to forget the outward symptoms that I had and concentrate on finding out whether I had an immune problem or not. That if I did have some kind of cancer or whatever that I wouldn't want chemo so not to worry about their budget, I just wanted to know what I was dealing with. I've read about liver/kidney/colon cleanses but am worried that my poor internals wouldn't be able to cope with fasting or whatever. Then I mentioned that I had bought a microscope and wouldn't be afraid to use it on anything that I might cultivate from my skin, bodily fluids in a petri dish! She said that I had some unusual symptoms and that taking some blood would be the next step,( hooray - result!!!).

So that's where I am at the moment and now the big question is (taking for granted that I might be able to have a say in what the blood is tested for) what test should I have done that will give the best result re the morgellons?

I'm going on a last minute holiday to Corfu on Monday night but when I get back I will set up the microscope and start investigating calluses, rain water, etc, etc and report back to the site. I just can't face doing it at the moment because I'm scared of what I will find......

Sorry again for the waffling on, been good to spill it all out!!

[Natalie]

So good to have you Bitfuzzy! I read your post with all the hope in my heart I could muster. You did a good job on explaining your story. Welocme to our group. You will be loved.

[bitfuzzy]

Thank you, much appreciated! You guys have been a god (or whoever) send and I promise that I will do my best to draw attention/research/whatever's needed to help our common cause when I get back. I have never been away with a buddy before, and haven't had a break without any kids for 20 years so I just want to enjoy next week as a 'normal/healthy' (whatever that may mean!) person. Mind you, saying that, I am wondering if a week without a pc/laptop/tv will make any difference..... I will let you know.

[carla]

Hi Fuzzy ,
Welcome to the Forum . Don't put all your hopes on the blood test as they usually come back clear.I hate saying that but I have to
The Hoilday will do you the world of good.I hope you enjoy yourself.
carla xxx

[Jo]

Welcome Bitfuzzy!!

Great to have you on board. VERY interesting about the arginine in the jet fuel!!!!

I'm excited that you've got a scope (what a weird thing to be saying!!!)

The serology section from the MRF may help, although I've never heard sufferers getting these abnormalities identified directly.

Morgellons UK - Awareness Campaign 2008 - Support

Have a lovely break,

Jo xx

[Kritters]

Hey Bitfuzzy!
Welcome to our looneybin! We love ya already. Have a great holiday and know you have a special Morgie family to come back home to.
Kritts

[bitfuzzy]

Hi again

Just spent hours trying to remember and double check the bookmarks to be able to share some of the stuff I've been looking at - only to find that I can't put links in my post yet

Anyway I need to get to my bed so I'm hoping that adding it as an attachment will work!

[bitfuzzy]

Hi Carla, hi Kritts,

Sorry, was so involved in mooching round the web I forgot to say thanks for the welcome! All of you that regularly post have had a really rough time of it and I so admire the way you've put yourselves out there, stood tall in the face of ridicule, been a sane link in an insane situation (even when you must have felt like hiding from the world) and given so many people, that will never register or post on the forum, that sense of calmness that comes with not only realising that they are not alone but also that there are some really good people out there who have got a 'dog with a bone' attitude towards the whole sorry debacle (?) and won't rest until answers are found and accountability laid at the right door.

(So if you are reading this as a guest and have taken heart, like I have, from anything you've read on this forum - please consider joining up just to say hi and thanks to these guys too. People are so quick to criticize and pick holes, from one newbie to another, let's swing the balance and put our hands together for all the hard work, plus the incredible amount of positive vibes and emotional support, that has been freelyavailable for all!)

<Steps off soapbox wondering where all the words came from!>

Still got loads to say but I'll get off the introductions forum and join in across the board! More than happy to exchange links etc if anyone would like to pm me, see if they're relevant and maybe post them themselves. I also have access to various medical journals that may be useful, I won't say too much here for fear of losing the privilege so pm for more info.

Thanks again chaps and chappesses,

[chester]

Thanks for bringing us the attachments and the thumbs up for our heart to heart vents on this forum. You are more than welcome to enjoy the magical soap box where words fly magically from the heart of this situation, and "flap"their wings with intonation and hand jestures that echo in our spirits as we bite into this bone we have to chew on. I am pulling up a front row seat to hear what you have to say...mom of 4 boys(deep breath, sigh...and wow).....awaiting news of the effect of a holiday after 20 years. My family has spent several nights on one this weekend and they call to tell me of their wonderful adventure while i alternate between tweezers, microscope and attempt to keep up with pet accidents that occur in their old age and rainy day seclusions. Someday....i will take that holiday with no holes in my skin or teeth or clothes and for sure i will call them at home and tell them great tales of adventure and brag. WEll....i look forward to that day everyday. Until then, however...adventure is in tiny world thru the wonders of our new microscopic toys...so, i do look forward to your findings as this appears to be where we shall find our evidence of behavior and anatomy. Thanks for the offer of help with the research...there are lots of doors shut to it by admission price. The price we pay to investigate this bizarre situation is multiplied back to us in the fellowship of wonderful unwavering and powerful words of encouragement that keep the flow of progress moving forward to a holiday from this mysterious intruder who has barged thru the door of our lives. Glad to have you mooching around this mystery!Nancy

[pat]

Where abouts in the UK do you live ? I take it you must live here as the word 'gormless' gives it away lol.
I really am flabbergasted that the GP could come out with what she did.I mean surely it's not allowed to discuss someones medical history with just any passing person who rings them up.It just isn't.That person could have been your no 1 enemy or anything.They are not allowed to discuss ANYTHING at all with ANYONE.And am afraid if this was my GP she would be for the high jump.This is a breach of confidentiality.And another thing bf,go fight these people.Give them the laser beam eye contact,take some COQ10 and really answer them back and take no prisoners.
Many people when dealing with docs are quite malleable and respecting of them.Mistake.Be assertive.Mine suggested me seeing a dermy or tropical disease specialist.I thought Aye Aye i can see where this is going.I said most forcibly,'Well if you can find one thats heard of morgs-OK,if not then don't bother because the first person who says I am DOP will get a smack'.Drastic but it worked.I said i hadn't become mental overnight.No one does.Ya need to get on supplements to fire the brain back up.They do work.
p.s.Not that i am a violent person (honest ninja) I tend to demolish verbally which is sooooooo effective.But you must give the eye contact-and they look away believe me.