do I have Morgellons ?

[scrollock]

I Live in the UK and believe I am a sufferer, the reason I question I have it, is that for a period of nearly ten years now that I have been told all of my symptons are in my head and I have had to change my doctors several times as they all eventually end up thinking I am an hypochondriac.

i first came across morgellons disease in a newspaper article recently, and a sufferer explained her symptons, which were mine to a tea! The convincing thing for me, was that of all of my various ailments over the years, i have always thought they were unrelated,but they where same ones as hers.

I guess it will help if i tell my story.

my problem started in 1998, i developed a serious itching problem which my doctor diagnosed as scabies ( it is nearly a 100% certain this was indeed scabies), i took the stanard treatment and the problem cleared up.

yet a month later, it came back, except i did have the crawling under my skin sensation but i put this down to the fact i now knew what scabies involved. knowing it was a standard easily treated problem with an off the counter solution i didnt bother my doctor again, so i treated myself and the problem cleared up again.

however the problem just kept returning and then clearing up when the standard treatment was used.after 6 months i returned to the doctor, who after inspecting my spots, told me that this wasnt scabies and was probably down to my overuse of derbac as i had treated myself several time and he recommended i stop using derbac.

this only made the problem worse, so i returned to using derbac, eventually the outbreaks became less frequent and severe.

over the years it has returned several times, the intense itching is very similiar to scabies, but the doctors say everytime its not scabies and always ask if i have an alcohol problem as the spots could be caused by my liver, however everytime a liver function test shows it is in good health.

i then started getting spots on my face, although they wernt itchy, but they would often get infected and i would have to take antibiotics to bring the inflammation down, when this happens a couple of time i squeezed them and a fine black her would pop out, i mentioned this to the doctor and he said the problem was ingrowing hairs.

then my fatiuge started and i started having problems with spelling, it was almost as if i had become dyslexic overnight, even for simple words, i was diagnosed with depression at this point.

most seriously which i have had happen recently, something which is seriously affecting my life, is that i have trouble listening to people, having a conversation on the phone is impossible, and when im out in a crowded place i have severe trouble hearing people yet they can hear me. I was sent for an hearing test, the result came back that my hearing abilities are actually above avaerage! i tried to explain the problem is not hearing sounds, but understanding them. the consultant thought i was a complete fantasticist, especially given the result of the test.

my doubts about having morgellons are obviously because ive been told i am a hypocondriac, my symptons dont seem to be as severe as most people here, plus i cant find any mention of the hearing problems as a sympton, yet the newspaper article i read about the sufferer, she had the exact same thing, i.e. she could hear, but not understand what she was hearing and i dont see any mentions of it as a sympton on here or any of the other websites.

do i have morgellons ?

[carla]

Hi and welcome to the site scroll lock, I think you do have Morgellons.I had hearing problems too. I and lots of others found relief from our symtoms by following the treatment steps on this site

https://morgellonstreatmentsteps.com/


I am in uk too and have a very very similar tale to tell as yours. You are in the best place you can be now and will find great advice and comfort, people who believe you and a lot of freinds too.
pm me if you need anything at all .

carla x

[gumball]

hi scrollock welcome to the forum i am not a doctor but what you have said so far sounds like some of the symptoms that most have i think all of us have been told its all in our heads but that is not the case it is under our skin and in other places too some of my own symtoms that i have had are itchy skin, crawling sensations, fibers that come out of my skin a few open sores that dont heal or if they do heal they come back in the exact same spot muscle or joint pain, brain fog it does hinder your thinking and proccessing thoughts these are just some of my symptoms i was told to go see a shrink but i found this place instead and i am so greatful i did there are others here from the uk too they can help give you information from the uk there are many caring people in here lots of info and suggestions have you looked at the treatment steps yet they have helped many of us ladycolorado and others are most helpful others will be posting their thoughts for you too again welcome gumball

[ladycolorado]

i was once a severe dyslexic and oly remnant i hear something yet at times not properly process it have to have it repeated. here is something to show some symptoms of this disease, our symptoms can differ as morgellons disease preys on weaknesses. check this out: Case Definition

The following case definition has been developed by the Medical Advisory Board of the Morgellons Research Foundation. It is an evolving document, updated for review by patients, practicing clinicians and interested health agencies, thus will continue to be refined as information becomes available.

The Following Signs or Symptoms are The Basis of Morgellons Disease as defined by patients that fit within a consistent boundary that is also outside the boundary of other “known” diseases. The initial three characteristics parallel a much more entrenched illness, Delusions of Parasitosis (DP) named decades before today’s laboratory technology and infection/immunity knowledge, driven by HIV, developed. The more recent findings listed below provide a far broader and more consistent evidence base, strongly supporting the likelihood that DP is a prematurely-assigned label to an organic, rather than purely psychiatric disease.

1. Skin lesions, both (a) spontaneously appearing and (b) self-generated, often with pain or intense itching. The former (a) may initially appear as “hive-like”, or as “pimple-like” with or without a white center. The latter (b) appear as linear or “picking” excoriations. Even when not self-generated (as in unreachable regions of babies’ skin), lesions often progress to open wounds that heal incompletely (e.g., heal very slowly with discolored epidermis or seal over with a thick gelatinous outer layer.). Evidence of lesions persist visually for years if not for life.

2. Movement sensations, both beneath and on the skin surface. Sensations are often described by the patient as intermittent moving, stinging or biting. Involved areas can include any skin region (such as over limbs or trunk), but may be limited to the scalp, nasal passages, ear canals, or face.

3. “Filaments” are reported in and on skin lesions and at times extruding from intact-appearing skin. White, blue, red, and black are common among described fiber colors. Size is near microscopic, and good clinical visualization requires 10-30 X. Patients frequently describe ultraviolet light generated fluorescence. They also report black or white granules, similar in size and shape to sand grains, on or in their skin or on clothing. Most clinicians willing to invest in a simple hand held commercial microscope have thus far been able to consistently document the filaments.

4. Musculoskeletal Effect is usually present, manifest in several ways. Pain distribution is broad, and can include joint(s), muscles, tendons and connective tissue. Both vascular and “pressure” headaches and vertebral pain are particularly common, the latter usually with premature (e.g., age 20) signs of degeneration of both discs and vertebrae.

5. Aerobic limitation is universal and significant enough to interfere with the activities of daily living. Most patients meet the Fukuda Criteria for Chronic Fatigue Syndrome as well (Fukuda, Ann. Int. Med., 1994).

6. Cognitive dysfunction, includes frontal lobe processing signs interfering with logical thinking as well as short-term memory and attention deficit. All are measurable by Standard Psychometric Test batteries.

7. Emotional effects are present in most patients. Character typically includes loss or limitation of boundary control (as in bipolar illness) and intermittent obsessional state. Degree varies greatly from virtually absent to seriously life altering. Noteworthy is the newfound strong possibility that emotional presentation does not precede “cause”, but rather that both emotional and physical effects stem from cytokine effects on neurotransmitter levels and receptor number (Buchsbaum, Schizoph. Bull. 199

OTHER COMMONLY REPORTED SYMPTOMS AND SIGNS

1. Shifting visual acuity. Unexplained frequent need to change glasses prescription.

2. Numerous neurological symptoms and clinical findings. A variety of neurological symptoms and signs have been reported. Common physical findings include abnormal Romberg, peripheral neuropathy (feet and fingers), abnormal reflexes, verifiable neuropathic pain and recurrent brain control abnormalities affecting motor function, circadian rhythm, body temperature and respiratory drive.

3. Gastrointestinal symptoms, often including dyspepsia, gastroesophageal reflux, swallowing difficulty, and changes in bowel habits (Similar to IBS or Crohn’s disease)

4. Acute changes in skin texture and pigment. The skin is variously thickened and thinned, with irregular texture and hyperpigmentation pattern. Overgrowth or hyper-growth phenomena are common (nevi, skin tags, microangioma, lipomas, callus formation).

5. Arthralgias. Frequently reported, although arthritis is not. Common joints are in fingers, shoulders, knees and lower vertebrae.

COMMON LABORATORY ABNORMALITIES

Elevated cytokines TNF-alpha, IL-6, TGF-beta, elevated inflammation markers C-reactive protein and TNF-alpha, Immunodeficiency markers low CD 56 or CD 57 number, C1Q, low IgG subclasses 1 and 3, hematological abnormalities low hemoglobin and hematocrit with abnormal RBC indices, and biochemical abnormalities elevated blood glucose, insulin, calcium, and serum Homocysteine and low serum potassium and magnesium.

[scrollock]

thanks for the replies guys, to finally have an explanation for the various problems i have had over the years is such a relief!

particularly distressing for me recently was the hearing test i had recently, the consultant even invited a load of medical students into the room when he gave me the results of the test. as he gave me them, he had large smirk on his face as proceeded to tell me that there was nothing wrong with me and my hearing was actually above average, basically the guy made me look like a dilusional idiot in front of his students.

despite my protestations, he told me i should not expect anymore help from the medical community as my problem existed only in my mind, which was particularly upsetting as i know it is real as i cant even use the phone anymore or hold conversations in crowded places anymore and this is preventing me from being able to find work, something i have not been able to do for over 5 years now because of the depression.

[Gator]

Hi scrollock,

I am very sorry you are suffering, but happy you found this forum of helping, caring people. We will all do whatever we can to help. Please follow-up the treatment steps by "Bubba' Morgellonstreatmentsteps.com

I found baronster's post very helpful as well as LC and many others. Some have gotten well and moved on or just post occassionally.

Hang in there, There is help. I have problems with understanding words also although my hearing tested good.

If you seek out more medical help, don't mention Morgellons or Lymes to them. They will diagnose you as delusional. I assure you, you are not delusional. You have a disease that is making you very ill with a lot of strange things going on.

May God bless and heal you,
Gator

[carla]

Thats Terrible scroll lock. These over paid idiots have no compassion whatso ever. We'll have the last laugh at their expense .
I had one tell me not to return if the scabies treatment did not work .Then on my records he'd indicated DOP . If he believed this why was he getting me to poison my children with this scabies treatment ?
That Doctor I told you about is in a different league to these morons.
he kept going until he found out what was wrong with me.
I felt so comfortable with him i had a sip of his coffee. lol
He just laughed . when i forgot my telephone number he said don't worry I do that all the time .
carla xxxx

[hilly]

Hi Scrollock.... I sent you a welcome message too but it seems to have been removed !!! did you see it ? will send you pm Hilly

[pat]

Hello,what part of the uk do you live in?It seems there are several in UK in different areas.I myself am in Yorkshire.
For some long time now I have had difficulty taking in what people say.I thought it was a concentration prob-if i meet someone and they tell me their name i have no recollection of it 2 mins later.I also call people i know by all sorts of names except their own.Talking on the phone and sometimes mind seems to wander off somewhere else.Listen to the radio for weather forecast and at the end of it i have no idea what it was.Strange but true.
Do you have any pets that show strange symptoms-but please please dont say you have chickens I couldn't stand it and Hilly will top herself Also have you noticed anything odd about your garden.
Have a word with carla there seems to be a doctor in Lancs who seems to be sensible re. this and a link to Lyme disease.I am going to see him oct 9th.

[hilly]

Pat..... lol...... going away for a few days to forget all this ;>) don't worry have sorted the chickens etc etc etc etc etc !!!