Its been a WHILE!.........

[Bubbles]

Ok, its been a long while that i have visited you guys....beentrying to cope with many things. Im young and live n a world where EVERY1 judges by LOOKS alone! Sad sad world here folks......anywho! I actually have a MAJOR question. As of Sun (9/9/07), I had 3 lesion-like red patches form on my chest. 2 on my cleavage and the other under my right breast.....they didnt itch AT ALL and so i just thought of it as an allergic reaction of some sort...well today i noticed that these tiny little pink bumps formed all around my tummy, side and back! They didnt itch either. B/c i've never had any skin probs n the past, i visited a nearby dermatologist and he informed me that i had Pityriasis Rosea(any1 heard of that??) ANd gave me some cream crap.....but since i've been home, i've become very itchy and my skin feels all creepy crawly(not sure if its the nerves or something else). So i have a few ?'s for u guys/gals

~Do the lesions appear without being itchy?
~Dose lesions have to be present in order for me to feel the creepy crawly sensation?
~Is it possible that i do have Pityriasis Rosea and not Morg's?

......I am TOTALLY wigging out over here! Plz give me SOME kind of insight into whats going on....

[ladycolorado]

hi bubbles, your first question about lesions not being itchy : sometimes. do you have to have lesions to feel creepy crawly? : NO . the body produces a biofilm with fungus , "primordial soup" of disease sticks to us. if you have the crawling before lesion or without them, and have seen fibers and specks , you most likely have morgellons disease. are you getting STUNG at all or problems thinking? so not crazy, just sick physically i think. i just sent you a pm, with info on possible CURE for disease. see if the cream works though dermatologists , however think mostly morgellons imaginary. so either site other cause, or say wounds self inflicted clothing fibers stuck to you. by the way, on the cdc website delusional parisitosis if click on it has been removed last time i checked when click on it. yep some people delusional, or think what we have is cool i am sure but not US. please tell all symptoms give us a better idea. but do try the cream see if helps, and best off not talking of morgellons disease to the dermatologist, (LC).

[Bubbles]

No i didnt mention the disease at all to him....wasnt sure if i was suppsoe to. I was going to c how the meds did and if it didntget better, bringit up(well not n e more since u told me not to)....as for my symptoms...here goes...

~creepy crawling sensation w/ itching (but not where red are)
~Itchy skin (although not associated with the patches)
~I do have trouble remembering a things occasionally but think its not related (at least i hope not)
~I DO few like something is biting/stinging me, followed by itching....but no lesions in area
~Itchy scalp
~Itchy nose & eyes on occasion (allergies?)

I havent seen specks or fibers,although I pray I dont.....I was doing well over the summer with no major complications with my skin and such....but since Sun, its like deja vu! This is the 1st that little lesion like things have formed on my body(though not with fibers and specks and such)

I just hope its something other than...1st i thought it was allergies....but who knows.
Also, do u have to test positive for lyme to have morgs? I dunno what kind of tests to ask for to c if its really morgs...any ideas?

[ladycolorado]

most lyme tests inaccurate like 70 percent . elisa most acurrate, and after that igenex. hold on find some tests may be helpful for you, although a dermatologist not the best doc to see, they just do skin systematic disease. some do not see specks or fibers, this stuff can be too small to see, i think. you might be lucky not have it i hope the case. but you are not crazy just trying to find a solution to your problems healthwise. other questions: appetite? joint pian? craving sugar? (if you are DO NOT EAT PROSESSED SUGAR). to be acurrate we have borrelia, the lyme parasite in most cases. here is wwhat bubba says on her treatment step site about testing: Consultation with a Lyme Literate Physician also treating Morgellons:

Once again, the following information is provided based on personal experiences. I visited a Lyme literate family practice doctor who also treats patients with Morgellons symptoms. The following information summarizes my treatment under this doctor’s care:

Lab Tests Performed:
- CD-57 NK (natural killer cells) (Lymphocyte Subset Analysis)2
- My values were 30 indicating I had severe natural killer cell deficiency
(i.e., decreased immunity)
- A normal count should be 200 or higher
- Western Blot
- CBC

Diagnosis: Lyme disease with possible Morgellons co-infection

Tried all of the following treatments:

1. Amoxicillin, Zithromax, and Doxycycline combination (took this for 2 weeks)
- had excellent improvement, but relapsed after stopping meds
2. Rifampin, Levaquin, Plaquenil combination (took this for 3 months)
- had excellent improvement but relapsed after stopping meds
3. Antihelminth medications
- took Ivermectin, Vermox, Albendazole, Thiabendazole, Mebendazole, Biltricide
- provided NO long term improvement
4. Marshall Protocol medications (Benicar and Doxycycline)
- made my symptoms worse
5. Leishmaniasis medications – allopurinol, magnesium oxide, and large doses of Diflucan
- had no long-term improvement
6. Miscellaneous herbs and allopathic treatments
- no substantial improvement

After researching and consulting with a few nurses and other doctors who are involved with Morgellons research, I visited a second physician who has successfully treated MANY patients with Morgellons symptoms.

here is more: THE CORRECT TREATMENT:


Consultation with a Chronic Disease Specialist Researching Morgellons:

Lab tests performed:
- CD-57+ NK (natural killer cells) (Lymphocyte Subset Analysis)2
- IgG (18 and IgM (189) from IgeneX (Western Blot Antibody Assays for B. Burdorferi)3
- CBC (Complete Blood Count)4
- CMP (Comprehensive Metabolic Panel)4
- ESR (Erythrocyte Sedimentation Rate)4
- CRP (C-Reactive Protein)4
- ANA (Antinuclear Antibody)4
- RA (Rheumatoid Arthritis) or CCP test4
- CPK (Creatine Kinase–MB)4
- T-4 (Thyroxine)4
- TSH (Thyroid-stimulating hormone or Thyrotropin)4
- RPR (Syphilis detection test)4
- ELISA-WB4
- B-12 (Vitamin B12 or Cobalamin; Folic Acid, RBC folate)4
- Heavy Metal Screen4
- Hb A-1-C (hemoglobin)4
- Insulin Assay4
- SPEP (Serum Protein Electrophoresis)4
- IgG-A-M levels4
- IgG subclasses4
- Herpes Panel4
- C1q (auto-immune marker)5
- IL-6 (Interleukin-6)6
- TNF (tumor necrosis factor)7

Based on the results of the above lab tests and my clinical symptoms, I was diagnosed with the following:

1. Chlamydia pneumonia
- Detailed information is provided below
- Found by simple IgG antibody titers
- Normal range = or < 1:10
- My values were = 1:1024 !!!!!!

2. Borreliosis (Borrelia Burgdorferi)
- Also known as Lyme Disease (more information is provided below)

3. Clinical Babesiosis
- The word "clinical" indicates that I was having symptoms of the disease such as:
- Fatigue
- Anorexia (weight loss)
- Arthralgia and Myalgia (joint and muscle aches)
- Nausea and vomiting
- Cough
- Dyspnea (shortness of breath)
- fever
- malaise

Along with the 3 pathogens just mentioned, I was also diagnosed with several other conditions caused by the pathogens:

- Chronic Fatigue syndrome
- Vasculitis
- Encephalopathy (Brain fog)
- Insulin Resistance
- IBS (Irritable Bowel Syndrome)
- GERD (Gastroesophageal Reflux Disease)
- Chronic Inflammation
- Skin problems (Morgellons symptoms)

It is important to note that many individuals suffering from Morgellons symptoms have also tested positive for some or all of the same pathogens as mine. According to a 2006 publication by V. Savely, M. Leitao, and R. Striker, in the American Journal of Clinical Dermatology, the following statement was made:
…“Many patients with Morgellons Disease have positive Western Blots for Borrelia Burgdorferi, the causative agent in Lyme Disease”...
http://morgellons.org/AJCDerm1.pdf

In another recent publication in 2007, Dr. W. Harvey, the Chairman of the Morgellon’s Research Foundation, wrote a letter to the editor of the American Academy of Dermatology making the following statement:
… "To anyone willing to look and listen, all patients with Morgellons carry elevated laboratory proinflammatory markers, elevated insulin levels, and verifiable serologic evidence of 3 bacterial pathogens. They also show easily found physical markers such as peripheral neuropathy, delayed capillary refill, abnormal Romberg's sign, decreased body temperature, and tachycardia. Most importantly they will improve, and most recover on antibiotics directed at the above pathogens"…
http://www.eblue.org/article/PIIS019...01958/fulltext

Currently, because the disease is still in its infancy and has not been properly investigated, there is no “standard of care” for treating patients with Morgellons symptoms. Each patient’s treatment should be based upon an individual treatment protocol devised by the patient’s physician taking into account both lab and clinical findings.

It is important to note that a “cookbook” approach to treatment is NOT advisable. That being said, variations of the VANDERBILT UNIVERSITY Therapy of Chronic Chlamydial Infections have been prescribed by Morgellons treating physicians and are helping patients with Morgellons symptoms improve significantly to the point where they are no longer acutely ill.
http://www.cpnhelp.org/?q=node/6

If a proper test for Cpn is not available or cost-effective, the following information is provided as an empirical course of treatment. (Empirical indicates that symptoms have been observed that will substantiate treatment).
hope this helps. if need her site or would like help with good medical, pm me i will try to help you, (LC).

[carla]

Hi Bubbles, I have all the itchy crawling feelings but not many sores. Some of the sores start off itchy and others don't. I think your Doctor is wrong about the rosea like many off our doctors. We have all been diagnosed with things we didnt have . You may have the rosea too but from what youve said its morgellons you got.
Try some treatments from here and see how you get on I m sorry i can say much to help you .Maybe someone else can tell you more . good luck carla x

[Bubbles]

So basically what i need to is go to a Lyme Dr and have them run tests on me? Or what is it that i need to do so i wont get the run around

[hilly]

probably more sensible than going to any other sort of doctor... Hilly good luck...