Science question/theory

Dear Dr. Buckner:

Please forgive the usage of this address (listed on the morgellons.org website as a link for physician inquiries) as I myself am not a Doctor, rather, (I believe) a sufferer of this disease/syndrome. At present I can think of no more appropriate place to pose my question and present my theory to you.

After having done somewhat extensive research online myself, I am drawn to the theory that Morgellon's Syndrome is actually a "symptom" if you will, of a "hidden" possibly antibiotic resistant bacterial infection, such as Chlamydia Pneumonia. (as theorized on the morgellonstreatmentsteps.com website)

Pursuant to that idea, I would like to pose the additional theory that the "Morgellon's parasite", if indeed there is such a thing, could actually be present in the body of the Morgellon's sufferer due to the presence of bacteria inside the cells? (Chlamydia Pneumonia specifically) Could these "parasites" simply be feeding on any bacteria present, internally and externally?

My concern is that by treating the symptom, ie. attempting to eliminate this parasite from the body (colliodal silver, salt diet, peroxide/salt baths, etc.), rather than the cause, could this not possibly have the unintended long term effect of strengthening the underlying bacterial infection, and thus do more harm than good?

Do you feel this idea has credence or has your research already disproved this theory or led you in other directions?

Sincerely,

David Franklin

----------
From: Douglas Buckner
Date: Wed, Oct 31, 2007 at 7:34 AM

Thank you for your email. We have no idea what causes Morgellons.
Your theory is as valid as anyones. Sometimes, bacteria and parasites
work together. For example, with Microfilia, patients are treated
with both antibiotics for the bacteria that the parasite lives on plus
antiparasitics.

We need research to answer all of the questions surrounding this
disease. I hope that you will consider making a donation.

Thanks
Douglas Buckner

Associate Director
Morgellons Research Foundation

----------
From: David Franklin
Date: Sat, Nov 3, 2007 at 5:16 AM

To: Friends, family and colleagues

I have forwarded the response (above) that I got back from the Morgellon's Research Foundation in case you are interested in reading it.

I am very glad that Dr. Buckner was able to take the time to respond. (most Doctors I have emailed thus far, seeking help and/or information about morgellons have not bothered to respond, and the ones I have been to see, none of whom had even HEARD of Morgellons, have all misdiagnosed me, often as delusional) I continue to be discouraged however, by the complete lack of any kind of helpful information regarding what I should do to remedy my steadily worsening condition, even from a source like this that professes to be an authority in the area of Morgellons.

After all my efforts, I am still at square 1, having accomplished nothing whatsoever.

Best regards,

David Franklin

----------
From: S.B.
Date: Sat, Nov 3, 2007 at 6:09 AM

David,

It is a fascinating, out of the box, theory. It seems to me though, that step one is going to have to be proving that the disease exists in the minds of the skeptical. Has anyone done genetic or molecular testing on the fibers to ascertain their content and origin? It would occur to me to start looking at other known organisms that produce fibers as a byproduct of their existence, i.e., spiders, silkworms, and so forth. And then to posit the existence of microbial relative capable of doing the same. Has antibiotics been successful in treating or curing any known instance of Morgellon's? If not, it would seem more likely a virus, in which case we'd be back to step one. (As far as I know virus don't produce byproduct.) I suspect the research keeps you engaged and makes you feel like you are making progress; keep it up and don't get discouraged.

S

P.S. Did you get the CDs I sent?

----------
From: David Franklin
Date: Sat, Nov 3, 2007 at 7:00 AM
To: S.B.

Hi S,

I've missed our chats. I had meant to thank you for the cds on several occasions, but i lose my train of thought so easily it makes it challenging to complete such a goal. (Thank you!)

Yes, my theory is based on the findings outlined on this website:

https://www.morgellonstreatmentsteps.com/Morgellons_Medical_informat.html

Apparently morgellons symptoms dissipate after a heavy regimen of antibiotics targeted towards eradicating the difficult to detect, and even more difficult to defeat, "Chlamydia Pneumonia".

I sure would love to get on some of those antibiotics, but have thus far been unsuccessful in finding a morgellons literate doctor that will see me without charging a hefty fee up front. (as I have no money to pay them for their services)

d

----------
From: S.B.
Date: Sat, Nov 3, 2007 at 9:11 AM

Aren't your parents in Arizona? Have them run down to Mexico. You can buy antibiotics over the counter down there. (It is possible to do that in FREE countries.)

--S.

----------
From: Me
Date: Sat, Nov 3, 2007 at 9:30 AM
To: S.B.

An interesting idea. Thanks for the suggestion. Are ALL antibiotics available without prescription? it would probably be easier for me to make it down to Tijuana though, than for them to head below the border themselves. (they are very busy, and it is still a 5 hour drive from Phoenix to Mexico)

It also occurs to me that my father lives in Las Cruces, NM which is less than 2 hours from Mexico, AND his job takes him all over the region.

Then there is the issue of money, of which I have none (nor does my father presently), but still it is an idea to pursue. I wonder how cheap meds are in Mexico?

----------
From: S.B.
Date: Sat, Nov 3, 2007 at 11:11 AM

Meds are pretty cheap. As for which ones are available over the counter, and how easy it is to get them back over the border, I don't know. Also I suppose there is the issue the quality control. But check it out. I know on the ship that people claimed they would stock up on antibiotics when they were in Cozumel. I never bought any myself, so this is just second hand (rumor I suppose).

--S.

----------
From: (The site owner of morgellonstreatmentsteps.com)
Date: Sat, Nov 3, 2007 at 12:55 PM

Hi David,

They are trying to get closer to the answers. Here are 2 areas they are focusing on:

1. actinomycoses and nocardiosis

http://web.indstate.edu/thcme/micro/actncard.html

http://www.nlm.nih.gov/medlineplus/ency/article/000599.htm

http://www.emedicine.com/MED/topic31.htm

2. microfilaria

http://en.wikipedia.org/wiki/Filariasis

http://www.filariasis.org/resources/microfilaria.htm

http://www.marvistavet.com/html/body_heartworm_treatment.html

http://library.med.utah.edu/WebPath/INFEHTML/INFEC041.html

Regarding the antibiotic, antifungal, antiparasitic protocol...

At this point it is not certain whether the meds are killing the actual Morgellons organisms themselves or possibly the pathogens (bacteria, fungi, etc) that may be attracting the Morgellons organisms to a person's body in the first place...this attraction might be due to the pathogens being a potential source of food, reproduction, or who knows what else.

The treatement method outlined in the Vanderbilt protocol targets the underlying infections (chlamydia, babesia, borrelia, etc). Many people have reported that once they get these infections under control, their Morgellons symptoms also resolve. It can take years of continual oral medication treatment before adequate results are achieved. Some individuals take 3-5 years of continual oral treatment before their symptoms resolve.

There are individuals who have searched the internet and found ways to obtain medications from pharmacy sites and veterinarian sites. However, it is not recommended that people self medicate. It is very important to obtain adequate lab testing and monitoring from a healthcare provider.

You will find a list of doctors below who have been helping patients with Morgellons symptom

UNITED STATES:

Arizona:

Stephen Fry, MD
15720 N Greenway Hayden Loop
Scottsdale, AZ 85260
480-991-4655
Family Practice
http://www.ucomparehealthcare.com/drs/arizona/general_practice/Fry_Stephen.html
http://www.yelp.com/biz/tzNKOYkJ9vpTGygEdX_Vig

Amin, Omar, M.D.
Tempe, Arizona
http://parasitetesting.com
email: omaramin@aol.com
480 767-2522

California:

Gruenn, Hans M.D.
2211 Corinth Ave. #204
Los Angeles, CA 90064
Phone: 310-966-9194
http://www.drgruenn.com/index.asp?page=aboutdr.gruenn
Email: manager@drgruenn.com

Harris, Steven J. M.D.
Family practice
Board Member of California Lyme Disease Assoc (CALDA).
200 Providence Mine Rd, Suite 110
Nevada City, CA 95959
530-470-9184

Dr. W. John Martin, M.D., Ph.D.
Burbank, CA
http://www.24-7pressrelease.com/view_press_release.php?rID=23911&tf7sid=6f8a60b46a4a67391296ce67de6c68bb
http://www.s3support.com/ProgressiveMedicine.pdf
email - s3support@mail.com

Savely, Virginia (Ginger) R.N., F.N.P.C.
TBD Medical Associates
450 Sutter Street Suite 1504
San Francisco, CA 94108
lymesf@gmail.com

Spencer, Edward M.D. (Neurology)
4 Ashley Ct.
Novato, CA 94945
Office - 707 763 6854
Or
47 Maria Dr., Ste 811 B
Petaluma CA 94954
Cell - 415 250 1835
edspencer3000@comcast.net
edspencer3000@mindspring.com
(Concerned about many conspiracy issues)

Stricker, Raphael B. M.D. (member of MRF)
Union Square Medical Associates
450 Sutter Street Suite 1504
San Francisco, CA 94108
Phone: (415) 399-1035
Fax: (415) 399-1057

Yang, Theresa, M.D., FAAFP
10201 Mission Gorge Road, Suite A
Santee, CA 92071
(619) 596-4963
http://www.dyfc.org/yangaddress.htm
(Santee CA is in San Diego’s east county)

Kurt N. Woeller, D.O.
Tracy Tranchitella, N.D.
http://www.mystillpoint.com/index.html
(951) 693-2267 or info@mystillpoint.com
32605 Highway-79South,
Suite 201
Temecula, CA. 92592
Phone: (951) 693-2267
Fax: (951) 693-2268

Dr. Rick Bierman L.AC
625 Arlington Circle
Novato, CA 94947
415-302-4397
accudoc1@comcast.net
rickb@healthfreedomsolutions.com
http://healthfreedomsolutions.com/lymedisease.htm#proto

Colorado:

Keith Bodrero, DO and Mindy Goodwin, PAC
5780 North Carefree Circle
Colorado Springs, CO
719-550-9100
Family Practice
Note: Dr. Bodrero and Mindy Goodwin, his PA were both trained by Dr.
Harvey on ways to treat Morgellons disease. Mindy was a PA in Dr.
Harvey's office for 2 years prior to the office closing. Mindy is very
familiar with successful ways to treat Morgellons patients. Both
individuals will be in contact with Dr. Harvey if they need his
expertise. You can contact them to see if they are accepting new
patients.
http://www.healthgrades.com/doctors-directory/profiles-md/Dr-Keith-Bodrero-DO-47EA7DD3

Connecticut:

Jones, Charles, M.D.
Hew Haven, CT
(Pediatrics)
Phone: 203-772-1123
Phillips, Steven M.D. familiar with Cpn
944 Danbury Road
Wilton, CT 06897
(203) 544-0005
Past President, International Lyme and Associated Diseases Society (ILADS)
Website: www.ILADS.org
http://www.ctlymedisease.org/bio.htm

Frederick Browne, MD
New Milford Hospital
21 Elm Street
New Milford, CT 06776
860-210-5007 http://www.newmilfordhospital.org/script/patientinfo_directory_results_detail.asp?PhysicianID=1876
http://www.newmilfordhospital.org/services/services_medical.htm#infectious

Florida:

Schaller, James L. M.D., MAR (member of MRF)
http://www.personalconsult.com/
Naples, FL – 239-263-0133
Tampa, FL – 813-909-8009
Physician and Author

Schwartz, George, M.D.
Boynton Beach, FL
http://www.healingresearch.org/news.html
http://www.healingresearch.org/drschwartz.html
drgschwartz@healingresearch.org
colleenjill@healingresearch.org
Phone: 505-424-9467
Cell: 505-610-8243

Sastry, Vatsala, M.D.
15435 Cortez Blvd.
Brooksville, FL 34613
(352) 799-2294
Or
2105 Highway 44 W
Invernness, FL. 34453
(352) 637-5000

Uppal, Neelam, M.D.
5840 Park Blvd.
Pinnelas Park, FL. 33781
(727) 547-5232
Infectious Disease and Internal Medicine
Practices in Largo, FL, Pinellas Park, FL, and Saint Petersburg, FL

Vitelli, Mario, Ph.D., LA.C
Physicians Health Center
420 SE 17th Street
Ocala, FL 34471
352-368-1099
352-351-5343 (Physicians Health Center)
Email: sciodrcarol@yahoo.com
Board Certified Biofeedback Specialist
Interested in examining and treating individuals with Morgellons symptoms

James E. Lemire, MD, PA
9401 SW Hwy 200 Bldg 90 Ocala, FL 34481-9612
Phone 352-291-9459
FAX 352-291-9465
office@LemireClinic.com
http://www.lemireclinic.com/index.htm

Georgia:

Susan E. Kolb, M.D., F.A.C.S.
4370 Georgetown Square
Atlanta, GA 30338
Phone: (770) 457-4677
http://www.plastikos.com

Michigan:

Ledtke, Michael A. M.D. (member of MRF) will only see patients who live in MI
150 Plymouth Rd
Saginaw, MI 48603
(989) 793-7779

Nevada:

Arezo Maria Fathie, MD
2649 Wigwam Pkwy #101
Henderson, NV
702-407-9994
http://www.generationsmedicalcenter.com/medicalspa/acne-index.html
E-mail: getwell@generationsmedicalcenter.com

New Jersey:

Bransfield, Robert M.D.
Red Bank, NJ
Phone: 732-741-3263
http://www.mentalhealthandillness.com/
email: rb@mentalhealthandillness.com
rbransfield@monmouth.com
http://pn.psychiatryonline.org/cgi/content/full/42/11/24-b

Emilia Eiras MD
702 Brewers Bridge Road
Jackson, NJ
732-905-9630
http://www.healthgrades.com/directory_search/physician/profiles/dr-md-reports/Dr-Emilia-Eiras-MD-665BEC97.cfm

New Mexico:

Daniel Kinderlehrer, MD
4 Torreon Place
Santa Fe, New Mexico
505-984-9700
http://www.healthgrades.com/directory_search/physician/profiles/dr-md-reports/Dr-Daniel-Kinderlehrer-MD-E244B855.cfm

Canfield, Russell M.D. PC
500 Don Gaspar Ave
Santa Fe, NM 87505
(505) 795-7111
Clinical assistant professor
University of New Mexico School of Medicine
Board Certified Holistic Medicine & Family Practice

New York:

Dr. Pratima Raichur - Aruyvedic doctor (India)
Pratima Ayurvedic Skincare Spa
110 Greene St., Suite 701
New York, NY 10012
(212) 581-8136
(Between Prince and Spring Streets)
www.pratimaskincare.com
email: orders@pratimaspa.com

Bernard Raxlen, MD
123 W 79th St
New York, NY 10024
212-799-2377
http://www.raxlen-lyme.com/

Horowitz, Richard I. MD
Hyde Park, NY
Internist, CAM – Lyme
845-229-8977
914-229-8977
http://www.nyema.org/nyema_gnl/horowitz_bio.htm
Board Certified, Internal Medicine, Former Assistant Director of
Medicine, Vasser Brothers Hospital, Specializes in diagnosis and
treatment of complicated Lyme disease and other tick-borne illnesses.
First Vice President of the International Lyme and Associated Diseases
Society, Inc. (ILADS)…familiar with Morgellons disease. You can call
to see if he is accepting new patients.

Daniel Cameron MD, MPH
Lyme Disease Practice and Research
175 Main Street
Mt. Kisco, NY 10549
Tel: 914-666-4665
E-Mail: Cameron@LymeProject.com
http://lymeproject.com/
Internist, epidemiologist, lyme
914-666-4665

Ken Leigner, MD PC
Internal & Critical Care Medicine
Lyme Borreliosis & Related Disorders (ALS Focus)
8 Barnard Road
Armonk, New York 10504
914-273-2121
http://www.canlyme.com/leigner.html

North Carolina:

Jemsek, Joseph M.D.
14330 Oakhill Park Lane
Suite 201
Huntersville, NC 28078
Phone: 704.987.2111
Fax: 704.987.2113
http://www.jemsekspecialty.com/
http://web.archive.org/web/20050205034620/www.jemsekclinic.com/lymedisease.php

Ohio:

Dr. James R Overman, M.A., M.H., M.Div., N.D., C.N.H.P.
Precision Herbs, LLC
9804 Township Road 89
Killbuck, OH 44637
330-276-6511
330-276-0411 fax
http://www.precisionherbs.com/index.cfm?fuseaction=page.display&page_id=20

Oklahoma:

Casey, Rhonda, D.O.
(Pediatrics)
3345 S Harvard, Bldg 200
Tulsa, OK 74135
918-742-8160

Werner, Carla, M.D.
(405) 755-1970
13321 N Meridian Ave Ste 406
Oklahoma City, OK 73120

Oregon:

Raffety, Stacey, N.D. (Dr. of Holistic Medicine)
Tigard Holistic Health Clinic – Oregon
11930 SW Greenburg Road
Tigard, Oregon 97223
Phone: (503) 639-1712
http://www.tigardholistic.com/faq.htm

Pennsylvania:

Bach, Gregory P., D.O., P.C.
Colmar, PA
(Internist) Family Practice
Phone: 215-997-9421

Texas:

Boulden, Kelly, M.D.
Fibromyalgia & Fatigue Center of Fort Worth
4521 S. Hulen Street, Suite 200
Ft. Worth, TX 76109
Toll-free: 1-866-443-4276
Phone: 817-924-1010
Fax: 817-924-6060
http://www.fibroandfatigue.com/aboutus.php

Curti, Tony, M.D.
806-445-9667 office
P O Box 65601
Lubbock, TX 79464

Hardwicke, Alan M.D.
425 Cypress St
Abilene, TX 79601
325-673-4488

Holt, Byron B. M.D., F.A.C.O.G.
Womans Healthcare Center of Houston
Professional Building II
909 Frostwood, Suite 110
Houston, TX 77024
713.365.2900
http://www.whcch.com/holt.html

Hamid Moayad, D.O.
1305 Airport Frwy., #311
Bedford, TX 76021
(817) 540.3388
Neurology, Lyme

Parrish, Mary, NP
Del Rio, TX
Phone: 830-774-4094

Stevens, James D.O.
Fibromyalgia & Fatigue Center of Dallas
12740 Hillcrest Road
3 Hillcrest Green Building, Suite 100
Dallas, TX 75230
Toll-free: 1-866-443-4276
Phone: 972-980-2300
Fax: 972-980-3730

http://www.fibroandfatigue.com/aboutus.php
Strickland, Carol, M.D.
Internist
St. Joseph Hospital/Medical Building
Houston, TX
(713) 571-7009.

Washington:

Ames, Geoffrey S. M.D., PLLC (member of MRF)
P.O. Box 430
Richland, WA 99352
Phone: 509-943-3934

Klinghardt, Dietrich MD, PhD & AANT
Bellevue, WA (near Seattle)
Lyme Specialist
aant@neuraltherapy.com
425-637-9339
425-822-2509
425.688.9220
425 688 8818
To read more about him refer to this site:
http://www.healthfreedomsolutions.com/forums/viewtopic.php?t=60
http://www.dstressdoc.com/Morgellons/medical_approaches.htm

CANADA:

Riddle, Chelsea N.D. and Klassen, Joe N.D. (both Naturopathic Doctors)
Fish Creek Naturopathic Medicine
2114-380 Canyon Meadows Dr SE
Calgary, Alberta
Canada
403 271-4500
Emails:
drjoe@fishcreek.ca
drchelsea@fishcreek.ca

Miklossy, Judith MD, PhD
Neuropathologist, board certified in neurology and psychiatry with
experience in molecular biology. She has been involved in the research
of Lyme disease for approximately 20 years.
University of British Columbia, Department of Psychiatry,
Kinsmen Laboratory of Neurological Research,
Vancouver, B.C. V6T 1Z3, Canada
E-mail miklossy@astro.temple.edu
http://www.samento.com.ec/sciencelib/4lyme/Bb_Alzheimer.pdf
http://stroke.ahajournals.org/cgi/content/abstract/33/8/1986
TEL: 215-204-0678
http://www.temple.edu/cnvcb/index.html

UNITED KINGDOM:

Dr. Andrew Wright
Dalton House, 33 Leigh Road,
Westhoughton, Bolton
BL5 2JE
UK
Tel No 01942 819301
http://www.lymediseaseaction.org.uk/conf2006/speakers.htm
thefatigueclinic@yahoo.co.uk

Dr. David Owen BSc MB BCh LLM
Place of Private Practice:
30 The Parade, Cardiff. CF24 3AD
UK: 02920 486168 or
outside: + 44 (0) 2920 486168.
http://www.drowen4lyme.co.uk/
http://www.lymediseaseaction.org.uk/conf2006/speakers.htm

----------

From: Mom
Date: Sat, Nov 3, 2007 at 9:12 PM

David

It sounds like the "Morgellon's Research Foundation" has not yet been able to find out anything that would be helpful, in which case they are being honest with you. Certainly they can't diagnose or treat anyone over the internet, and obviously they won't do so unless you are their patient and are paying them (or have an insurance company that will pay them). It was nice of Dr. Buckner to respond to you, as you said, even if you still feel frustrated by his response.

Love, Mom

(Did you get the second Halloween card I sent you?)

----------
From: Me
Date: Sat, Nov 3, 2007 at 11:00 PM
To: Mom

Yes, I got the 2 cards & the $6 you enclosed a couple days ago. Thanks! Wow! 2 Halloween cards AND $6! What a very odd and unexpected (yet very appreciated) surprise in the mailbox! Was that intended as busfare so I can get to the G.A. Office this week? Anyway, whatever the reason that is most likely what it will be used for! Thanks! It will definitely come in handy!

I intend to go on Monday and re-apply for caap now that the 60 day penalty period has passed. I got a response from the lady who runs morgellonstreatmentsteps.com who I forwarded Dr. Buckner's response to. I will forward it to you.

My friend S suggested going to Mexico to buy the recommended antibiotic regimen for eliminating Chlamydia Pneumonia (avail without prescription, and cheap apparently).

BTW, It appears there is a Dr. in your area, out near the mayo clinic, that treats morgellons. Could you check with him to see if he will see me in my present financial status? Maybe I can come home for Thanksgiving for a couple weeks, get diagnosed, and begin some type of treatment regimen if so! When I come back, (presumably with my diagnosis in hand) perhaps that would be enough to begin the process of applying for disability?

d

Help From "Above"

To: Janet Fedeles
Subject: Morgellons Disease/Syndrome
Sent: Wed, 24 Oct 2007
From: Rev. Robert Johnnene OFA

I have a friend/parishioner who is suffering from Morgellons and living in San Francisco. He has been unable to get any help from the State or the medical professionals he has seen. He is unemployed because of this disease and his welfare benefits were cut off again because he missed an appointment.

He cannot afford the $500-$600 per hour that the two doctors in the area who are successfully treating the disease are charging.

He is a smart and capable young man who now fears that he is losing his mind to the disease.
I would appreciate any advice or assistance you might be able to give in his case.

I am not in a position to help financially as I only live on less than 900 a month myself.
We are a Catholic mission of the Franciscans of the Annunciation serving the metro West Section of Boston Massachusetts (and all of New England and the entire world via the internet). We believe that all God's children deserve respect, and the same rights and privileges as every other person regardless of their race, creed, sexual orientation or marital status.

A humble simple servant of Christ,
Rev. Robert Francis Johnnene OFA
Mission St's. Sergius and Bacchus
Holliston, Massachusetts
508-429-0992
E-mail: Mission_St_Sergius@msn.com
Web Site: www.missionstsergius.org

----------
From: Janet Fedeles
Date: Wed, Oct 24, 2007 at 1:04 PM
Subject: Re: Morgellons Disease/Syndrome
To: Rev. Robert Johnnene OFA

Dear Reverend Johnnene,

Unfortunately, most of us are in the same boat. I have lost everything, as well. My parents are helping me right now but this cannot last forever.

Does your friend have a computer that he can look at Marc Neumann's site? www.morgellons-research.org. In this site, Marc has some excellent suggestions about cleaning clothes, environment, etc and also about hygiene in which homeopathic products can be used. Also some pharmacy sites where antibiotics can be ordered without a prescription. I understand that he has no money but just maybe someone can help him in these regards.

Will the practitioners in San Francisco not see anyone who cannot pay? This saddens me.

I will pass this on to Marc Neumann, as well. He may have some other ideas.

Please keep praying for all of us. I pray daily and wish I could do more for your friend and many others.

Sincerely,

Janet Fedeles

Fires in San Diego

From: Mom

Date: Tue, Oct 23, 2007 at 6:24 AM

David,

We're very concerned about the fires in San Diego. Your Aunt Kathy and Uncle Clark, their daughter Maggie and her family (her husband Kenton and baby Maya) have all been evacuated, along with 250,000 other people. The really hard thing for your Aunt Kathy (besides the possibility of losing her house once again) is that she had knee replacement surgery on Wed., and she just got out of the hospital on Sun. Then she had to leave her home on Mon. I don't know where they're staying, and I don't know if their house is all right this morning or not. The winds in the area are still high, and they expect them to be that way at least through Wednesday. 500 homes in the area have already burned.

Love, Mom

----------
From: Me
Date: Fri, Oct 26, 2007 at 12:06 PM
To: Mom

Any news yet?

----------
From: Mom
Date: Sun, Oct 28, 2007 at 2:48 PM

Aunt Kathy wrote:
All is well here now. I have a home health nurse coming twice a week to check my coumadin level and a physical therapist coming three days a week and I'm already feeling pretty good. Still hurts a lot and I'm still trying hard to straighten my leg, but it's healing pretty well and I'll get there if I keep working at it. M is my constant companion, holding onto my walker as we walk down the hall or outside, chattering away as I struggle and strain.

Love, Mom

UPDATE: This time, my Aunt and Uncle's neighborhood was spared by the fires raging through San Diego. 4 years earlier it was a different story. I cannot help but be reminded of their traumatic ordeal. Below is a letter my Aunt sent out after the 2003 Cedar fire in San Diego County which burned their home (and thousands of others) to the ground.

----------
From: Aunt Kathy
Date: Sun, Oct 31, 2003

Hello everyone,

Wow, what a week it has been for our family. As most of you know by now, last Sunday was a day that changed our lives forever, not just because of the total loss of our home to wind-fed wildfire, but because we have also been the recipients of an incredible outpouring of love and caring from our friends and neighbors (whose homes survived the fire), and from friends across the country who have called and written to express their sadness and concern for our family. It has helped us to cope as we sift through the ashes, to know that others bear our sorrow and have hope, as we do, that it really is going to be okay. We'd like for everyone to know that we are all safe, have a place to live that is wonderful, and have already begun the process of repairing our lives. We know it's going to take awhile and we are prepared.

Last Sunday, October 26, I was awakened around 6 a.m., by the acrid smell of smoke. Clark had stayed up until the wee hours of the morning working on a forensic case that he’d been called to testify in on Monday morning and it seemed like he’d barely gone to bed. We had been warned on the 11 o’clock news the night before of strong Santa Ana winds that would be blowing overnight, and like most San Diegans, had gone to bed with our windows open for ventilation because of the dry heat that comes with the winds. The smoke I woke to was something very different. We had known that a fire was burning in the mountains near Ramona, a community about 50 miles northeast of our house in Scripps Ranch because there had been news reports about it on the Saturday morning and evening news. Wildfires this time of year are a common happening and tend to strike in the hills and mountain areas of Southern California. Firefighters are generally prepared for them and residents are asked to do what they can to keep dry brush away from their homes and property year round. (Our homeowners association makes it mandatory for all of us to have a hundred feet of cleared land on the canyon side of our homes, and maintains this firebreak several times a year). These mountain fires are often terrible and consume many acres of wilderness area, but are usually contained by the setting of backfires that help confine the fire and eventually keep it from spreading. We smelled the smoke from the Ramona fire in our neighborhood on Saturday and simply assumed that the high winds were carrying it westward from Ramona toward the ocean. We never imagined that the fire would move 50 miles in just a few hours, jumping firebreaks, and crossing highways and freeways, and ultimately consume our neighborhood. Even now, in the aftermath, we can't make much sense of the path the fire took.

I had turned the television on at about 7 a.m. just to see where the fire was still burning, and believe it or not, only one station was saying anything about it and what they were saying was very, very little, mostly a re-hash of what was said at 11 p.m. the night before. We were informed that the fire was still in Ramona, though it had now moved closer to homes and was burning at a faster rate than anyone expected because of the high winds. I finally made Clark get up around 7:30 because I was getting nervous about how quickly the sky was changing from a blue morning sky to cloudy gray/black. I had closed all the windows in the house and it was starting to get warm inside. He reluctantly got up, groggy and wondering why I was so anxious about everything. Once he made it downstairs and took one look out our back door, he knew something was badly wrong.

By 8 a.m., we couldn't see the sun anymore from our back deck and the sky had turned almost black. We could definitely tell that something had very suddenly changed because ash was raining down and black clouds of smoke were boiling across the sky. Suddenly, one tv news reporter (that we actually know because he lives in our neighborhood and our kids were friends with his kids), was on tv, reporting from in front of his house saying that he had had neighbors calling him to report fire in the canyons in Scripps Ranch. Clark and I looked at each other and at that point, we decided to get some things together and leave the area just because of the intense smoke. Even though we’d closed all the windows, we really couldn't breathe very well inside our house and outside, it was impossible. Clark said to me, “Let’s just pretend that this is a dry run for evacuation and start gathering some things together in case we really do need to evacuate. We opened the garage door to pull our cars out so we could open all the car doors and load both our cars with stuff at the same time. At that very same moment, we were met with police and firemen running up both sides of the street banging on doors, yelling for everyone to stay calm and “evacuate immediately”. I immediately began to panic, literally felt my heart start thumping because I had just seen a fireman and a policeman looking me straight in the eye with fear and intention on their faces and yelling at us to “LEAVE NOW”! Clark was stunned but very calm; he took my hands and looked straight at me and told me to pack whatever I could in the next 5 minutes and be ready to go real quick. I didn’t know where to start or what to grab first. Clark grabbed a bunch of file boxes and I went into the office and got all our personal files. Clark literally yanked the cables from the back of the computer and then took as many as he could unplug from the wall. We ran upstairs, got suitcases down and started grabbing clothes from the closet and drawers. For whatever crazy reason, I grabbed stuff for Clark and not much for myself, figuring he would have to go back to work the next day and would need his suit and shirts for testifying in court. I didn’t even go into Claire or Natalie’s bedrooms, or the bonus room where a lot of photo albums were on shelves. As I rushed around, I tried to call Jes, Maggie, Claire, and Natalie but none of them answered their phone. I left crazy breathless messages for them, telling them that there was a fire and that we were being evacuated and asking what I should try to grab from their rooms. When they didn’t answer, I just didn’t go into their rooms figuring they already had their important things with them at school. Mostly though, I think I was somewhat in shock and couldn’t think straight about what to do next. I remember my hands shaking so badly and not being able to make them stop. Clark yelled up to tell me to take all the pictures from the upstairs hallway walls (that Natalie and I had just spent hours re-hanging after repainting the whole upstairs during the summer). There was a very large box that Clark had managed to bring up at some point and he told me to put them all in it. I grabbed every one and discovered that I couldn’t move the box because it was so heavy. I called for him to come help me take it down to the car and before I knew it, he came up, picked the box up like it weighed nothing and ran it down the stairs to put it in the back seat of my car. I couldn’t believe he was able to do that, but now I know what they mean by having super-human strength during times of extreme distress. Clark certainly did that day. After that, Clark said we’d better go.

When we opened our garage door to leave, Fairbrook Road’s two lanes had suddenly become three lanes of traffic going in one direction out of the neighborhood. It was unusually quiet and every driver had the same look on their faces: panic and fear. I remember thinking that there was probably more we could take and Clark and I walked quickly through the rooms downstairs before deciding that there was nothing else we could fit in the cars. Only much later did I remember what we should have grabbed, but of course, by then it was much too late to do anything about it). As we took one last look out our back door to the canyon behind our house, we could see flames starting to burn across the entire horizon. I had my camera in my pocket and took two last pictures. On our way to get in the car I noticed my Bose cd player sitting in the garage where I’d been listening to cds the day before while refinishing furniture with Maggie. I grabbed it, mostly because it was a gift from Clark and it had a radio, and for whatever reason, I thought we might need that. We had called dear friends in La Jolla who told us to come immediately to their house. Clark grabbed my hand and gave me a little smile and a kiss on the cheek and told me, “Don’t worry - I’m sure we’ll be able to come back after everything is over. They’ll get to our house before anything can happen to it.” Once on the road, I looked at my watch and found that we had actually just taken 10 minutes to run through our house and grab whatever we could and literally threw it in our cars. We were able to get most of the family pictures off our walls, the important household papers from our home office, a few clothes and shoes, and our cat "T.K.", who is 18 years old and was totally oblivious to all the chaos going on around her. I never ever thought we were saying a final goodbye to our house and everything still in it. We saw our next door neighbor Joanne, an art professor at San Diego State, wrangling her two dogs into her van and ran over to ask her if she needed any help to get her many, many works of art out of her house. She said a tiny bit wistful but said, “No…it’s just art. If I lose it, I can always make new stuff.” I was amazed! She told us to stay in touch with her and be safe. We all got into our cars and left at the same time.

We were out of our neighborhood within minutes because of police action to block our exit off the 15 freeway and the opening up of Pomerado Road, (the main road in and out of Scripps Ranch), to four lanes of traffic in one direction rather than just two lanes. They kept the emergency lane open for fire trucks and police racing into the Ranch. We had tried to call all our kids to let them know what was going on and unbelievably, we met Maggie and her boyfriend Kenton, in her little red Honda hatchback, coming to help us gather up things just at the exact same time we were leaving the area. I don’t know how they’d managed to get onto Fairbrook Road but we yelled and waved at them to turn around right in front of us to leave the area and go with us to La Jolla, where my best friend, Mary Lynn Gage lives. It was just too late to go back to the house or any reason and I just had to yell it out the window to Mags. She just looked so confused and sad when I told her and I knew right then what it was going to be like to have to tell the other girls.

Once we were safely away at our friends' house, we sat glued to the television trying to take in the fact that what we were seeing on television was our neighborhood going up in flames. It was just incredible to behold. Mary Lynn and Rusty had made breakfast for us and we just all quietly ate, none of us knowing what to say. The Gages said that they could see the black smoke in the eastern distance, but never even considered that it might be our neighborhood. Later on, when Mary Lynn convinced me to go for a walk on the beach to get out of the house, we were met with a little snowstorm of falling ash raining down on us. We just looked at each other - didn’t even say a word; she just hugged me and we kept walking, both of us thinking that that ash might be part of our house. We spent the whole of Sunday just quietly contemplating what life might be like for us if our house really had burned to the ground. Clark fielded calls from all our friends and family, and talked with our other girls trying to keep them up to date with any information we were seeing on tv. All they really wanted to know was if the house had survived. Maggie and Kenton sat in the backyard at our friend’s house talking and occasionally, I’d see Mags wipe away tears. The fire consumed every moment on every station on local tv, and we switched channels constantly trying to find any station broadcasting from our area or street to find out if the fire had actually reached our house or had somehow skipped over it. At some point, Natalie called, a little hysterically, from her dorm at UC-Davis to tell us that she’d seen our address on a fire website that said it was a total loss. She also said her friends from Scripps had been calling her all day to tell her whose houses were gone, and when we told her that we had no confirmation of any of that ourselves, she calmed down a little. She wanted to come home right away, as did Jessica and Claire. At first I didn’t want them to have to deal with any of what was going on - Natalie and Claire were in school, and Jes had just started a new job. I quickly realized that they couldn’t really focus on what school or work when their hearts were in San Diego with us and what was going on here.

It wasn't until Monday that we actually got confirmation that our house was really gone. The mayor had issued a statement asking everyone to stay home from work and keep kids home from school for a week. The air quality was very poor and there were actually still fires burning in different areas of San Diego. The courts were all dark because of the mayor’s edict so Clark didn’t have to worry about testifying. The Monday following the fire, Clark got up really early and drove back to Scripps Ranch to see what he could find out. Fire and police weren’t letting anyone into the neighborhoods because the ashes of the homes were still too hot to let anyone go walking around on them and they really didn’t want to have anyone get hurt, and they said there was still the possibility of flare-up. Clark said that even though it was very early morning, there was quite a group of residents, mostly men, gathered at the corner of Pomerado and Semillon wanting information. Eventually, police agreed to take down addresses, a few at a time, and do a quick drive-by to see if the house was still standing. Clark said he gave ours and waited with everyone else to hear the news. When the policeman came back with a ‘yes’ or a ‘no’, Clark said you’d either hear a small cheer, or nothing. Some people cried or just turned and walked away when they got the bad news. Clark said he just stood there for a minute, taking it in. It was a lot to handle and he was all by himself when he heard. Then, he drove back and told me. What I wanted to do when I heard was just scream and cry but I just sat down and then the tears came. My friend cried and hugged me and told me that it was going to be okay. What could anyone say or do to make it okay? I had known the house was probably gone but until you actually see your address on an emergency website and get those calls from friends who had snuck in under the cover of darkness to see for themselves, you just live in denial that it can't possibly be true that the house you thought you'd be returning to is really gone. Clark told me a day or two later that he had called our house at 10:10 that Sunday morning and the line was insistently busy, a sure sign that there was no longer a phone at our house. We’d left around 8:45 that morning thinking we’d be back and now there is nothing to go back to.

Jessica flew in on Monday night from her home with David in Providence, Rhode Island, and I must say that it is a relief to have her here. She is somewhat in shock at what has happened, but still has the ability to be a bit removed since she didn’t actually see what we saw. She’s very proactive and positive, trying to keep our spirits up and always telling us that we’ll find a way to deal with whatever we may find when we get to go back to our neighborhood. She’s right and we will.

We didn't actually get in to see our house until Tuesday afternoon. Fireman and police continued to patrol our neighborhood to keep people from entering because there were still numerous hotspots and small flare-ups. Scripps Ranch was famous for it’s eucalyptus groves and now all the trees in our area are black and brown, burned to the point of instability if they are still standing. Jes, Maggie, and I joined hundreds of people on Tuesday afternoon at the entrance to our neighborhood, and one by one, as they checked our driver's licenses to verify our address, were allowed walked in to see what was left of where we had lived for so long. Clark met up with us a little while later. At first all we saw were homes that were untouched by the fire, though all landscape and canyon areas were burned right up to the homes themselves. It was kind of amazing to realize that some homes had actually managed to survive that inferno. Then a block later we came to the first indication of how the fire had completely obliterated whole blocks. Just complete devastation. Everywhere we looked we saw what was left of the homes of close friends, burned utterly to the ground. Everywhere were the skeletons of cars in driveways, bare brick chimney stacks, and here and there, the semi-recognizable remains of bathtubs and barbeques. It was shocking and so unbelievably sad to see these homes gone. All you think of when you see your friends' home in rubble is all the happy times you've spent there, watching your kids and their kids do silly things, the backyard cookouts; it all just floods back. You keep thinking how bad and sad this must be for them.

Then we turned up our street and it was worse than we could have imagined. Every turn revealed another inconsolable family in the street looking at the destruction of their home. Adults and kids were everywhere, crying and hugging each other, staring in disbelief. Everything was a shade of black, brown or gray. Every once in awhile a piece of green lawn peeked oddly through where no rubble fell. Policemen and firemen slowly trawled the street making sure only residents were walking onto the actual home sites. Again, the unusual quiet in a neighborhood that should be teeming with kids, cars, bikes, and noise. A few media walked the street trying to talk to residents who had nothing much to say except to express their incredulity and shock at it all. The neighbors whose houses survived were at a loss as to what to say, every one of them feeling guilty that their house had survived.

When we got to our own house, we all held hands and just sobbed at the totality of the burn. You just stand there and stare and try to find anything recognizable that might welcome you back, but there is absolutely nothing. The fireplaces and chimneys look naked and sad that only they survived. We tried to get our bearings and figure out what part of the house fell where, but it was impossible in the fading light of the late afternoon, so we just walked around the perimeter of the house to see what path the fire took. I’m not sure how, but some good friends (Gary and Peggy Hetherington) were waiting for us when we arrived at our house and they cried with us for our loss, having been there so many times over the years for happy occasions. They just walked with us in silence, looking over the rubble, being careful not to step on anything that might be precious. None of us could talk very much. Trying to take it all in is too much at first and you don't know what to do or where to start. The beautiful slate walkway to our front door is shattered and splintered having been crushed beneath the falling house. The rose bed that we so lovingly cared for was burned to the ground and gone. The trees in the front yard exploded and weirdly, were in a star shape on the front lawn making it hard to walk around them. You keep looking at it all again and again trying to make some sense of it, but, really, everything is just gone.

After a little while, we started to realize that the fire had had it's own way with our neighborhood. The winds had whipped it here and there, throwing sparks every which way - there truly was no rhyme or reason to it's path. Our two neighbors to the west (including the art professor) had their homes spared, but our neighbors to the north and east of us lost their homes like us. When we made our way to the back canyon, where we'd seen flames starting as we fled, we were shocked to see that the fire had not made it to our back fence and had in fact been held back quite a way. The lantana and geranium flowers just outside our fence and in the canyon were still blooming with bright little flowers. Our next-door neighbor whose house had survived, had burn right up to her fence and all through her back yard but her house had been spared. How did her house not burn up? Our neighbors across the street lost their home despite having a tile roof and stucco. Again, we believe it was the wind that blew burning embers all over the place and wherever the embers could find a foothold, such as in a tree, on a roof, or dry brush, it took the opportunity to flare up.

It got dark pretty soon after we got there and the police made everyone leave again. We made a plan to return the next day to start looking through the ashes. Clark didn't want to disturb any part of the ruins until Natalie and Claire could return home to see the house as we saw it. Thinking of them seeing it for the first time as we did was too much for me. Natalie is our one child who does not like change, and fights hard to keep every remnant of her life the same, never minding if things get outdated or old. Claire can appear strong on the outside but is really a softie on the inside and deals with trauma like we all do, with lots of tears and the need for hugs. Natalie did arrive on Wednesday morning, after a long flight on Tuesday night that had to return to Sacramento because of fog in San Diego, and Claire came in on Thursday morning with her boyfriend, Ransom Boynton.

It breaks your heart in a different way to see your children searching through rubble for any little treasure from their young lives, knowing that they probably won’t find anything. After awhile though, when your friends come over and your kids’ friends come over, many with their parents, and your neighbors keep stopping by to see if you need anything or give you a tidbit of information, you start to realize that there are a lot of people who are going to be looking out for you and making sure that you’re taken care of in one way or another. It really is going to be a long haul, but we are going to be okay eventually.

We sifted through the rubble for 5 days and we found a few little things: 4 sets of ceramic baby bootie Christmas ornaments, unbroken, even though all the glaze and decoration has been burned off of them. They were in a box of tons of other Christmas ornaments in the storage loft of our garage. They were found in the ash spread over the entire lot of our house. A very sweet find! Nat found clumps of melted coins - $175 worth – in the area of where her upstairs bedroom fell to the ground. Claire found a piece of a front yard tree that she’d carved her initials on as a kid. Maggie found odds and ends of things for others, but really nothing of her own. She lost lots of books and pictures that were being stored at our house. Thankfully, Jes had nearly all of her pictures and things with her in Rhode Island, but did lose her beautiful wedding gown, that had been cleaned and carefully boxed for storage after her wedding. Clark lost his wedding band and says he feels naked without it. He and I think about all the stuff we should have grabbed; we see it all in our mind’s eye and know exactly where it is in the old house. We keep telling ourselves not to feel guilty about not grabbing those most precious things, but I think David’s mother, Carter Flemming, put it best, “We carry pictures in our minds and hearts that no camera can ever adequately capture, of loved ones gone from us and experiences that only happen once in a lifetime.” So true.

After 5 days, and sweeping the entire foundation clean, literally, we stopped our sifting and have begun the task of starting over. Someone told us it might take two years or more. Wow…I can’t even think in those terms yet. We’ve also left our friend’s house in La Jolla. For now we have been given the use of a beautiful beach house in Del Mar, thanks to some generous people at our church. It’s not where we want to be, of course, but what a lovely respite for the time being. We’ll be able to spend the holidays there with all our children and we’re really looking forward to that.

Thanks for all your calls, cards, thoughts and prayers. We’ll stay in touch and give updates as time goes by. We’re going to be okay.

Love, Kathy

UPDATE: This final picture is of Clark many months after the fire. By this time the lot has long been cleared, as have others in the neighborhood, we have gotten plans for the new house drawn up by an architect, and have settled on a builder. You can see the capricious nature of the fire across the street where one house survived (the lady who took those pictures after we had all left!), and many on either side did not. Anyway, Clark is standing in front of what became our koi pond. We had invited a bunch of people over for a "lot party" complete with barbeque and drinks for toasting our new house. Clark outlined it with rocks we found on site and did the official groundbreaking by taking a shovelful of dirt from the soon-to-be koi pond! It was a great day!
xo AK

UPDATE - Health continues to decline

Dear Family,

Things are not going so well. I thought by finally having a computer again, and getting it online, I would be able to communicate with ease due to Skype and email. However, I have discovered that my condition has deteriorated quite a bit since the last time I had a working computer, and to my surprise, it is now much more difficult to make phone calls, and even composing email has proven to be very challenging for several reasons. Phone calls are often useless because I can't remember what to say, or sometimes even why I am calling. Emailing is somewhat better because I have all the time in the world to collect my thoughts and try to get them out, but even this is challenging. Maintaining a train of thought long enough to type it is no longer possible. I have to constantly try to refocus, concentrate, and try to remember the point I was attempting to convey long enough to type it out. Sometimes it is simply lost into the ether forever, and does not get communicated. I am often left with a nagging feeling that there was something very important that I wanted to say, but cannot remember what it is. This is happening right now.

My typing skills are so bad now that I don't think that 6 months of no computer can be solely to blame. I was trying to type my password for the router this morning, which has to be entered twice. Twice? How about once! It took me well over 20 attempts, and I'll admit my increasing frustration did not help. I tried to stay calm, focus, and carefully type the password, which is XXXXXX, something I ought to be pretty used to typing, but I just couldn't do it. I would stare at each letter I wanted to press, but my finger would simply not go there with enough precision to hit the right key usually, and when I was able to hit the key I wanted, I would often hit the keys around it as well. Things got a little better since then, as I became fully awake, and began to type this, but I am two paragraphs in, and it has taken a couple hours to get this far, due to all the reasons I mentioned.

My mental abilities are definitely worsening. The best way to describe it is as others who have Morgellons often do. "Mental Fog." This is the clearest moment I have had in weeks, which thankfully has given me enough clarity, presence of mind, and ability to type this, but usually I am just drifting along in a fog, don't know where I'm going, don't know what I was doing 5 minutes ago, don't know what I'm doing now, don't have a goal or a plan, or maybe I do, but I don't remember what it is. I miss all my appointments. I missed one last week with GA , who wants me to jump through more hoops. Now I have to "re-qualify", which means re-fill out all the application forms, (20+ pages) submit a new letter from my landlord (that'll be fun), and show a bill, less than 30 days old in my name, or if that's not possible, in my landlord's name, then deliver them all in person at the assigned time. When I found out that I missed it, I re-scheduled for a week later, figuring that would give me enough to get those things together, but I just discovered that appointment was yesterday. I had no idea that a week had passed so quickly. I guess it must be that I am sleeping so much, that I am not aware of the passage of time. If I had to guess I would say it averages 18-20 hours a day. I don't really keeps tabs any more on how much I sleep, as it is difficult to do that anymore. It is always sporadic, and I usually have increased mental fog when I awake. Sometimes I sleep for 14 hours straight, sometimes for 2 hours, sometimes for six hours, and often times 2 hours later I will be asleep again. Occasionally I will actually remain awake for as long as 12 hours or so, but it is becoming less frequent. It is not consistent at all, and I exercise no control over it. I welcome it in fact, as being awake equals being uncomfortable, miserable, and depressed. I also have to spend more money on food when I am awake more.

Last week I went out and bought a 4 oz bottle of colloidal silver ($18) from the health store up the street after seeing this video.

http://www.youtube.com/watch?v=XcL8HvA7sME

I tried it, for a couple of days, before i accidentally dropped the bottle, and the rest poured onto my bed, and experienced a 'purge' like the one she described, although at this point I guess you could say that these I am always experiencing a 'purge' but usually on a less dramatic level. IE. 'things are coming out of every orifice of my body, and as best I can tell, also reentering the same way. They are in my nose, my eyes, my ears, my mouth... let's just say, EVERY orifice, even the ones you don't normally think about as orifices (until things start going in and out of them), and definitely some that you'd rather not have anything like that going out of, or especially into.

I have been bleeding in small amounts from my ears, my nose, and even my belly button, I believe from the aforementioned 'purge', or at least blood has been trailed there by the 'things' going out of my body, as evidenced by scabs in those areas. There is a small scab, accompanied with quite a bit of 'discomfort' in my urethra as well.

Basically I am beginning to doubt that I am capable of "getting it together" enough to apply for disability, although I am trying to come up with a much needed system to remind me constantly of things I need to do, that can permeate my mental fog, but this is very hard to devise and implement when you are frequently in a mental fog!

I have an appointment on a tuesday of this month, either last tuesday, or the upcoming one, hopefully the latter (although does it really matter?) with a Dr. from the SOMA Clinic. She wanted to see me months ago to discuss something that came up on my bloodwork, but I haven't been able to keep my appointments up to now. I really want to see her though, as I'd like to show her all the stuff I learned from the website, get a test for Lyme disease and others, and possibly start some of the prescription meds recommended there. Did I share with you the email that I got back from the lady who runs the website? I will forward it to you if I remember. She included a list of Doctor's in my area that are treating Morgellon's. The only bad news is that the only "Dr." in SF other than $500 NP Ginger Savely, whom I can't afford, is a Dr. who she shares an office with, Dr. Stricker, who charges $600 an hour. Definitely you should read the entire site if you get a chance, especially the page titled 'medical information' which is her theory that morgellons is actually a symptom of a disease called "Chlamydia Pneumonia" that lurks in your system beyond the scope of normal blood tests, and slowly destroys your immune system among other things. (making you more susceptible to parasites such as morgellons among other things, and eventually causing death)

Well, I am only about half done telling you everything I need to health-wise, but my moment of semi-clarity is ending, and I am having such a hard time trying to find the words for what I want to say. I am getting sleepy, and I have been working on this email since 10am or so, and it is now almost 4pm, and I cannot go on. I will try to cover the rest in my next email if I can remember what i have to tell you

I am reminded of a short story I read in gradeschool, titled, 'Flowers for Algernon', which is a collection of letters from a person with an idiot IQ, who is given an experimental drug that turns him into a genius, and then the effects fade and he is returned to idiot status as is charted by the declining quality of his letters (or was it a journal?). It is a must read if you have not, although I hope I do not share his fate. I bet it is even available somewhere online if you were to google it. I will try to remember to do that later.

I see that a couple more episodes of House MD, my favorite television show, have downloaded to my hard drive, and I am eager to watch at least one of them. although I often fall asleep half way through as I probably will this time. I am watching the show from the beginning, in order, due to the wonder of the internet. The shows slowly (and I do mean slowly) download to my hard drive when I am connected to the internet, and I get to watch them (in 480P HD) on my computer, commercial-free when they are done. For free! One of these days the tv people will get smart and let you download their shows directly from them (with commercials intact), but hey, who needs them! For that matter who even needs Tivo anymore! At least I am finding one benefit from finally having a working, internet-connected computer again. I may be losing my mind and my health, but at least I can still watch the tv shows I want, when I want, as often as I want.

btw, it does not escape me the irony that House MD is my favorite show, when Dr. House would almost certainly dismiss me as delusional just as quickly as so many of the doctor's I have seen up to now have. Or would he? I like to think not. ;)

d

----------
From: Me
Date: Fri, Aug 24, 2007 at 9:45 AM
To: Family

I looked up "Flowers For Algernon" with Google this morning, after re-reading my letter from yesterday, and was surprised to find that not only did I get the name and details about the short story correct, but that they have since written a novel, a play, and a movie.

Personally, I think the story was perfect in its original form, (a collection of "progress reports"), and feel the adaptations would just take away from it. (in the same way that the movie adaptation of "Bridget Jones Diary" did so horrendously)

I even found a copy of the original short story posted online, in case you haven't read it:
https://www.educ.kent.edu/community/DOCWHIZ/rdng4.html

As I said, it is a great story and a must read, but I hope I do not share any similarities with his fate.

Another thing that strikes me as odd, is why can I remember the name and details of a story I read 25 years ago so clearly, but not what day it is, or anything else recent?

One thing I had hoped to do once I got this computer working, was to begin the preliminary steps of writing a screenplay, loosely based on my life, titled 'falling through the cracks' (or something like that but more clever). At the moment, I now realize I am not even remotely capable of such an endeavor. I can only hope that things improve somewhere down the road.

I also want to read that book Mom told me about, about writing, by Stephen King. Do you have a copy of it you can send me? I wonder if that is available online too?

I wonder if the slight "lifting" of the mental fog I have been experiencing for brief moments over the past two days can be attributed to the colloidal silver i took? I wish the damn medical community would get off their asses and do something about this so I dont have to figure it all out for myself! (using myself as my own gineua pig). hmm... They have a lot of nerve being so arrogant towards those who "self-diagnose" and "self-treat" when they leave us no other choice for obtaining any kind of treatment.

d

----------
From: D.D.
Date: Sat, Aug 25, 2007 at 11:20 AM

Dave,
Stop sending me book long e-mails about anything. I will never have time to read these things with how busy I am, and I have no money and I'm in serious trouble for it. What do you expect me to do about your situation? The more you try to make yourself seem totally incapacitated, it makes me just give up trying to think I can do anything to help. If you want to just give up on life altogether, there isn't anything I can do about it. It makes me sad, but there really IS NOTHING I CAN DO ABOUT IT! Stop it! I won't have any money for a long time, and if you have given up doing anything for yourself, nobody is going to waiste their time flushing energy down the toilet trying to help. I'm ready to tell you the same thing I did before, don't write e-mails telling me how fucked you are. If that's what you think, then you are fucked, and there isn't anything I can do about it. If you had something positive to say, maybe I could react in a positive way. If you are convinced that you are fucked for life, then you are, and you will only bring me down with you. I can't do that, Dave. I worked so hard to have my wife and what little free time I can come up with to visit her. Any thing you ask of me will cost me time with my wife, so I just can't do that. STOP IT! YOU CAN HELP YOURSELF! People have no legs on wheel chairs and they work. I told you before, if you would just demonstrate that you can get any kind of work at a temp agency, or anything, maybe people would see that you are trying and give you some help. If I decided to stop working, do you think anyone would give me money? Would you give me money if I was in your situation? No? then why should I give you money? That isn't how life works. I was happier after I told you not to talk to me anymore, and you stopped trying to manipulate me for money. I felt bad that I wasn't hearing from you, and I was worried, but it was easier that having to be petitioned daily for money. O.K., Dave, so lets say you are right, and you have this Morgellons Disease, WHAT THE HELL DO YOU WANT ME TO DO ABOUT IT? THERE IS NOTHING, AND THERE WILL NEVER BE ANYTHING I CAN DO ABOUT IT! HELP YOURSELF! My life is too full of responsibility, and my relationship with my wife suffers. I am working on moving to Brasil so I can live with my wife. take care of yourself! I really hope you do. Life has always been something that if you think good, good positive things happen, if you think bad, then bad is what you get, and we're all going to die anyway!

----------
From: Me
Date: Sat, Aug 25, 2007 at 12:20 PM
To: D.D.

D,

I excitedly opened your email the moment my computer notified me that it had arrived hoping that perhaps you might have offered some words that may cheer me up. A simple "hang in there david, be strong" would probably have done the trick, and helped me feel less depressed and alone.

Nowhere in this email, any previous emails, or by any other form of communication, have I EVER asked you for money! You clearly have me confused with someone else. I sent you that email because I thought you cared about me and would want to know what is happening to me, not to glean money from you. I'm sure there are a lot of temp agencies that will allow you to sleep whenever you need to, and give you a job with blood and other "things" pouring out of your orifices, can only type 5 wpm, and be unable to think clearly, or complete a sentence without losing your train of thought. I will try not to remember your poisonous words the next time I am out walking the Golden Gate Bridge. Don't worry though, I'd be too scared to jump off (as I found on my previous walk). When I'm unable to tolerate these conditions anymore, I think some of Dr. Kevorkian's useful tips that I've downloaded from the internet will be the way I'll handle things instead.

I can't sugar-coat the details of my life so that you aren't 'distracted'. If this hate is truly what you feel towards me, then I really don't care to hear from you again. The LAST thing I need in my life right now is further negativity from you.

Was this one short enough not to inconvenience you?

Have a nice life brother.

----------
From: Mom
Date: Sat, Aug 25, 2007 at 5:15 PM

David

Of course, I've read "Flowers for Algernon" and seen the movie, a long time ago. They're both classics. I haven't had time to write because since it's the beginning of the school year, I've been really swamped. I'm also trying to learn a curriculum that I've never taught before and a computer grading system (PowerSchools) that I've never used before. So I've been up every night until at least midnight and I have to get up at 5:00 a.m., teach all day, do it all over again each night. Exhausting! Hopefully one of these days I'll start to get caught up. We just finished the second week of school.

Well, I have a huge stack of papers to grade, and then I have to figure out how to enter the grades into the program on the laptop the school gives me.

I wish I could be of some help to you. I really feel helpless from here and don't know what to do.

Love, Mom

----------
From: D.D.
Date: Sun, Aug 26, 2007 at 12:35 AM

Dave,
Do you realise I have been planning to help you after I get my money, but I didn't want to tell you, because you won't try to help yourself? I will fix the subaru after I'm done with it around January, and then get you into your own house with 12 months paid. I've been very realistic telling you the things in my other e-mails. If you insist on giving up and being negative, how can you expect anyone else to take care of you? Don't tell me you're going to jump off bridges trying to manipulate me. It just belittles both of us. Do you understand that every time you send me all this negativity, I can't eat all day, and get overloaded with stress. There isn't anything I can do to help you right now, and I'm very busy until January. It's going to be the hardest year I've ever had, so please don't make it worse with all the negativity. It would be nice if you had something positive to say for once. I've had enough of this trauma to distract me for a while now, thanks. try to at least keep in mind that you are distracting me from getting my work done so I can even help you out as long as you send me negative e-mails, and I will feel like I'm waisting my effort the more negative you are. If you have given up on life, there isn't anything I can do but be sad about it.

----------
From: S.B.
Date: Mon, Aug 27, 2007 at 10:24 AM

It is good to know that you are making progress, even if you don't realize it yourself.

One thought. my doctor has put me on something called Concerta, which is an ADD medication. It has helped with my ability to concentrate and consequently with my memory. We had tried a different medication earlier, Strattera, which had worked substantially better, but that one had caused some dangerous side-effects for me and had to be discontinued. Perhaps an ADD drug might help with your concentration, or fog, issues. The fog you describe is very familiar to me. I also lose track of time very easily since the stroke.

Please keep in touch.

S

----------
From: Me
Date: Wed, Aug 29, 2007 at 9:18 PM

Hi Family,

I have left D.D. off the recipient list on this one, as he only wants positive news apparently, and I really don't see any purpose in continuing to include him on these "updates". Whether good or bad news, I never know how he will react, and it sounds like he has enough on his plate right now anyway.

I wandered upstairs yesterday around noon (something I RARELY do anymore), as doing so usually guarantees interaction with my landlord Bob who is usually drunk. As I had feared, I ran into him, but thankfully he was not drunk. In fact, he reminded me that I had a Doctor's appointment! Amazing! So important to me, yet it simply hadn't occurred to me at all! I quickly printed out all the documents I needed, using Bob's computer (CDC letter, Mayo Clinic letter, OSU letter, and several pages from the morgellonstreatmentsteps.com website, including her theories about Chlamydia Pneumonia (being the cause of Morgellons). It's amazing in itself that I recalled, quickly even, all those items that I wanted to show the Doctor, before I rushed down to her office. After waiting 2 hours in the waiting room (during which time none of the 30 or so people in the waiting room was seen) I was told by the receptionist that my appointment had actually been the previous week, and that the doctors do NOT see people without an appointment. No exceptions. I attempted to appeal to their humanity or sense of reason, and was rebuffed on both counts. Having a condition that makes it difficult to remember appointments is NOT a valid reason for missing appointments apparently, and NOTHING is valid reason to allow for the suppression of red tape usage in that office.

I am now scheduled for September 4th at 2pm. My missed appointment from last month with the Psychiatrist, Dr Moranville, whom I have not yet had the pleasure of meeting, is now set for Oct. 1st, at 8:45am. I explained that in my present condition I am quite fatigued and "sleep a lot", and that experience has taught me that my odds of making it to a later appointment are better (if only for the reason that it allows more opportunity to remember or be reminded of the appt.), and asked if there were any other appointment slots available later in the day? There weren't.

I left there rather perturbed, but still had the presence of mind to stop by the G.A. (welfare) office to jump through whatever hoops I had to to get my benefits restored again before Friday's deadline (after missing my last two appointments for "re-qualification"), and re-apply for food stamps (which automatically ended last month as they do every 3 months). Both my CAAP (cash benefit) worker, and my FS (food stamp) worker are on vacation, which means I am probably screwed on the CAAP (which means no check on the 1st, and no more colloidal silver), but I was at least able to submit the form to extend food stamps for 3 more months. HOWEVER, the worker who took my form from me saw my CAAP forms and said "Oh, you get a cash benefit too? You need to report that as "income" on your food stamps application. That will probably reduce your monthly food stamp benefit (of $155) by half, and if you have not been including that on previous applications, they may suspend all your benefits until the amount you were overcompensated has been corrected.

So, now I have either 50% or 0% of my food stamps coming on the 1st and NO cash benefit.
Such a productive day! So glad I went down there to those two offices to get everything sorted out in person. It's always better to do these things in person I've always found, don't you think? At least it was when I lived in the real world. I've apparently crossed over into the twilight zone though unfortunately so I guess that doesn't apply here.

In other news, the benefits I attribute to having taken the colloidal silver (which I am out of) are now fading unfortunately, and my thinking has been murkier today than it was yesterday.
So, how has your week been?

d

----------
From: Mom
Date: Wed, Aug 29, 2007 at 9:58 PM

Yes, I guess D "can't handle the truth". I will write those appointment dates on my calendar so I can email you to remind you ahead of time, if that will help. It seems to me all their psychiatrist appointments are at 8:45 a.m. That probably just means they schedule everyone for that time and everyone who actually shows up just sits in the waiting room and gets seen one at a time until the doctor has seen everyone. What do you want to bet?

I boxed up some razor blades I had bought for you, along with a sample of the razor that we got in the mail, so you should be receiving that. It's that Gillette--I already forgot the brand.

I'll let you know what we find out after Bob has his appointment on Friday to find out the results of his bone marrow biopsy that he had three weeks ago.

Love, Mom

----------
From: Mom
Date: Thu, Aug 30, 2007 at 10:34 PM

How about if I take the day off September 4th and come to SF to accompany you to your dr's appointment at 2:00? I could fly in for the day, take a cab from the airport to your place, pick you up, we could go to the clinic, then call another cab when you're finished.

BTW, did D come to see you today?

Mom

----------
From: Me
Date: Fri, Aug 31, 2007 at 10:41 AM
To: Mom

no, D didn't come. i called him to see what was up and he started yelling in my ear about all of his stress. i kept it civil, and attempted to steer him towards a productive conversation, but didn't get much. first he said that he was too busy to come, then he told me he had to come, but wouldn't have time to see me.

as for the 4th, i will be there with bells on if i can just remember. call me and email me in the days leading up to the appt, and that should be fine. lets save the visit for something more important (like an SSI hearing or something) btw, i turned on my cellphone, so you can also call me now: 415-XXX-XXXX

d

Missed Appointments and Facial Lesions

Mom,

I missed my doctor's appointment because I remembered the date wrong. It turned out to be on the 9th. These things are so far out when they schedule them they are impossible to remember. Heaven knows what I do with the appointment slips.

My condition has worsened, and I now have lesions on my face, as well as most of my body, and am in constant misery as far as that goes. The "infection" is definitely in my respiratory system, as every time I blow my nose, it is accompanied by a tickling/crawling sensation, in/on/and around my nose, and there are lesions in that vicinity. The organisms have been getting into and irritating/stinging my eyes quite a bit lately as well.

I was supposed to report to the GA Office on Friday the 13th to supply a doctors note or other evidence to support my claim of disability, which I wasn't able to obtain because I missed my Doctor's appointment, so I was hoping to get an extension. Just as I was leaving the house on Friday to go to my appointment, there was a police raid on the house, and I was handcuffed, searched, and prevented from leaving, as were the other occupants of the house while the police conducted a search warrant on the entire house for a few hours. I have no idea what they were looking for, but 3 people in the house were arrested for drug related offenses based on things found in their rooms and on their persons. By the time the police finished the search, and released myself and the others, it was too late to go to the GA office, which meant that my welfare benefits would be terminated. (If you miss your appointment with GA, your benefits are terminated, and you have to wait 60 days before you can start the application process again from the beginning, during which time you get no benefits)

HOWEVER, I went in today without an appointment (and waited for 4 hours to see someone), with a copy of the search warrant that the police gave Bob, which was dated the same as my appointment, and was able to convince them, not only to restore my benefits, but also to give me a 3 month extension on providing a doctors note supporting my claim of disability! This was a BIG relief!

I have found a credible (in my judgment) website that details a comprehensive approach for combating the skin related issues related to Morgellons, posted by a fellow sufferer, and I have started following some of the tips, which seem to make a slight improvement and provide a small amount of relief. I will have to buy the rest of the products (not cheap) mentioned in order to fully check it out, but I have high hopes. I just have vinegar, peroxide, selsun blue, and salt
now (not enough for a bath) and have using the "spray method" detailed on the website. You can check it out yourself at:

https://www.morgellonstreatmentsteps.com/Morgellons_Topical_Treatmen.html
(This website is no longer active as the owner of the site was threatened to take it down or face fines or imprisonment due to the fact that it recommends treatment for a medical issue without medical license to do so. This is a pitiful example of how it seems the Medical system is set up to HURT us rather than help us.)

My last problem is that my cellphone is eating up WAY too much money! I NEED to get a PC running again so I can use email and Skype instead of my cellphone. I have been without a working computer for almost 5 months now!

I actually have all the working components of a Pentium 4 computer except for one item. I DESPERATELY NEED A PENTIUM 4 MOTHERBOARD! (Dell wants $250 for a new one. Hell, I could buy a used computer for that!) I have two Intel processors that I believe still work, (The 1.8Ghz Pentium 4 from my Dell, and a 2.4Ghz Celeron) and 512MB of one type of RAM (a DIMM with two indentations) and 256MB of another (a DIMM with one indentation). Obviously it would be best to find a board that is compatible with the 2 indentation RAM. I have a monitor, several empty PC chassis, various cards including several monitor cards, ethernet cards, and even a WiFi PCI card. Can you PLEASE check with K and B, and see if anyone has a working motherboard they are no longer using? I could cut $50-$80 a month out of my monthly budget if I had a working PC!

I still need to get a new hard drive, but I see that goodwill's downtown location has used ones for $20. Then it looks like I will have to buy Windows XP once again, as it appears my Windows XP Installation Disk and License Key were amongst the items that were stolen from my room while I was in the hospital. But, initially I should be able to borrow someone else's XP disk to get things up and working and then run for a while using the 30 day evaluation version. At the end of the 30 days you can reformat your hard drive and get another 30 day trial period. As long as I have a spare hard drive to back up my data, this can be an effective way to run until I can afford a new copy of XP. ($100)

Two Trips to the Emergency Room

In February I decided to visit the ER of the UCSF Medical Center (the closest hospital to my home) after yet another "ocular invasion" (attack of the eye), during which my eye swelled shut with intense pressure, and felt like it was continually being pricked by 1000 needles at the same time. At this time I was starting to lose my hearing as well. By the time I became fully aware of it, I estimate that about 50% of my hearing was gone. (Within 2 weeks my hearing slowly returned to normal, although there have been many recurrances of this since then)

After an 8-10 hour wait, they examined me and noted that my eyes and ears did seem to have some kind of infection. They told me to go see an E.N.T. (Ear Nose Throat) Doctor and then discharged me. (I never went to see an E.N.T.)

Before the doctor discharged me, he happened to mention a word to me which I had never heard before. "Morgellons". He did not elaborate other than to say that one of the former physicians in at UCSF had left his practice to start a clinic or research center to study "Morgellons".

He did not explain what Morgellons was, but implied that I should do some research about it. I asked him to write the word down for me, so I'd know what to look up. He wrote a single word down for me on a piece of paper. "Morgollons" (It was misspelled, but I figured out once I got home that he must have meant "Morgellons") I still have that paper around here somewhere!

He acted like what he was telling me was "hush hush", and then discharged me shortly afterwards. This intrigued me to the point that I immediately looked up the word "Morgollons" when I got home. (and then Google suggested "Morgellons" instead)

At first it was difficult wading through all sorts of sites offering various snake-oil remedies for Morgellons, but finally I found some legitimate sites, and some research articles written by Ginger Saveley, FNP.

THIS WAS IT! Finally! my symptoms outlined perfectly! After 2 years of inexplicable symptoms that didn't add up, I believed I finally had an explanation! Why had I been unable to find this info before? I suppose it must be because most of my previous google searches included the word "Parasite".

I began to spend almost every waking hour researching this new lead, until I became certain that THIS was at last the explanation for all my mysterious symptoms!

THEN, about a month later, during which time I only left my room occasionally to eat, and had no other real social contact, I suddenly realized that I was turning yellow! My skin was yellow, my eyes were yellow, and I felt much more awful than usual.

I headed back to the ER at UCSF Medical Center. This time they admitted me, (after making me wait for about 14 hours in the ER waiting room) and ran all sorts of tests for 6 days ($40,000 worth according to the bills they still send me), before they concluded that I had Hepatitis A, and sent me home.

In retrospect, I recall that during my prior visit to the ER a month before, I used a filthy toilet in the Hospital lobby. Since all of the toilets were in atrocious shape (some with vomit, others with fecal matter) I carefully selected the least horrifying toilet, having to clean some fecal matter off the seat with toilet paper before using it.

I believe this is how I must have come by my Hepatitis A infection. A Nosocomial Infection. As if I didn't have enough problems without that! You'd think in a hospital full of sick people they'd do a better job of cleaning the toilets!

The good thing that came out of all of this was that I was able to discuss my symptoms in depth with several doctors at the hospital during my stay, and they ran a battery of tests for me. Unfortunately none of them were familiar with Morgellon's. While they eventually came to the conclusion that I was suffering from Delusions of Parasites, just as the previous doctors I had seen did, at least they bothered to take a scientific approach, and run some tests first. (One theory they were considering for my Jaundice was a parasitic blockage)

While I gained no further insight into my illness, I had at least gotten an extensive battery of tests that ruled out other possible causes such as HIV, Hep C, cancer, etc.

While I still was suffering from all of the symptoms that I attribute to Morgellons, and no closer to finding a solution, at least I could take comfort in the fact that all my tests seemed to indicate that I was healthy of all the other conventional diseases.