Topic : 07/14 What's Up, Doc? Part Two

I've had Morgellons for 5 years. I'm online daily with scores of people with the affliction. I see people walking around with the same lesions I have. Its horrendous for the doctors to tell us we are imagining this very real condition. I am profoundly disappointed that the doctors on this show were so uninformed.

I am surprised that no one researched the information on Morgellans far enough to find that the CDC had already started a research program at a Kaiser facility in California last August. 

 

There is a connection between chronic Lyme disease and Morgellans.  There is a group of doctors called illads who has been at the center of the controversy about the reallity of Chronic Lyme disease and Morgellans. 

 

Many people have been trying to figure out what the fibers are.  So far they know that they do not burn even above 700 degrees and that they draw ions to their surface which makes them magnetic.  This magnitism is what makes them move towards each other under the skin therefore giving the sensation of crawling. Perhaps we will know more when the Kaiser Study releases its information.

Good Lord! This disease is just beyond gross!!

 

Gives me the shivers to think about it!....sounds like something from outer space.

I feel sorry for anyone who has to deal with it!

My personal experience with having a dropped uterus follows. My doctor told me that my dropped uterus happened because of having my children and he gave me three choices: 1) stay in pain for the rest of my life 2) be walking and have my uterus literally drop out of my body, or 3) have surgery for a partial hysterectomy (removal of cervix and uterus). Because I had already gone through 1 1/2 years of one infection after another, plus I had all the children that I wanted (three), I immediately chose the surgery. It was one of the best decisions I ever made.

 

However, I was not told about potential post-operation side effects that I happened to experience (I don't know if they are typical side effects). One side effect was a very bad bladder infection (it painful because I waited too long to go to the doctor, but was better in a couple days). The other side effect that was even worse for me was that one day, for only one day, I became very suicidal. Because of my religious belief, I would never commit suicide while in my right mind. There were absolutely no reasons for the suicidal feeling because, even though I was a single parent of three, I was looking forward to the surgery, and I had a great caretaker for the children while I was hospitalized and first recovering.

 

So, Dorine, please have the surgery ASAP so that you'll feel better. However, ask the doctor to fully explain all the potential side effects that may be worrisome to you.

 

You will probably need to be on Estrogen for several years, but it is a small tablet, and a small price to pay to feel so much better.

 

(I needed to composed this quickly, so I hope that it makes sense).

I hope Samamtha reads this, because I totally relate to her breast implant nightmare.  I survived the implant fiasco of the 90's, and I cringe each and every time I hear of another woman fall through the cracks after their problems arise.

 

Samantha, don't trust what I say as a simple message board contributor.  HOWEVER, for the sake of your health and mental peace, as well as comfort, PLEASE DO THIS:

 

 Google and research the credentials of Dr. Lu-Jean Feng of Cleveland, OH.  In 1993, when Dr. Feng bailed me out of the biggest mess of my life, she was the head of Case Western plastic surgery.  She was on staff at Mt. Sinai Medical Center in Cleveland, which no longer exist (there is one in NY).  When the hospital in Cleveland closed, she opened her own practice to not have to go to NY.

 

In 1990 in a large, cosmatolitian town in SC, I had a subcutaneous mastectomy and reconstruction with polyurethane implants (one month before the FDA took them off the market).  My highly qualified board certifed head of plastic surgery in our town put in implants larger than I had ask for.  He denied that my capsule contractures were problems, denied that I was having problems similar to MS as a result as getting the implants.  He had failed to factor in prior to surgery that I have mild scoliosis, and just basically put me through his cookie cutter implant regime.  I then went to a big guns doctor at Duke but got no help.  I discovered that the reason I got no help was that the doctor was one of the inventors of the implant that was giving me a fit. 

 

Around this time, an organization called The Command Trust Network began to do it's wonderful work with a Sen. Ted Weiss from NY (now deceased), and they were bringing great attention to the fact that MOST women that have implants problems, but basically, the AMA describes the complications as being within normal.  (Just wrap your brain around that!!!!)

 

So, I called the Command Trust Network and spoke to Sybill Nyden Goldrich's assistant.  I ask them this question:  "Where in the entire United States of America is a highly qualified doctor that can get me out of this breast implant mess and give back my life on a silver platter?"  It's the single most meaningful and important phone call I have ever made.  They gave me the name of Dr. Lu-Jean Feng in Cleveland.

 

I made contact with Dr. Feng by sending her copies of my medical records.  She had a 9 mos. waiting list of breast implant mishaps needing resolution, and when she saw a picture of my zerograms (a special type of mammogram), she bumped me up to only have to wait 6 weeks to get surgery.  She thought the surgery would only take 2 hrs. but was careful to tell my husband that with the type of implant I had, there was no telling what she'd run into.  It took 6 hrs. to remove my implants.  Many of my lymphnodes were fused with polyurethaned.  The right implant was butting into my armpit.   Dr. Feng encouraged me to take a long time to recover from this and said to try to live with the concave holes in my chest, but that if I could not, she could help me further.   I waiting past the recommended healing time, and  I could not turn over in bed from my back to my front because my center of gravity was different.  My sex life was in the pits.  I could not function well on my job from having to wear hot breast forms in the SC heat.  I was losing sales income which was providing the college education for my son.  So, I recontacted Dr. Feng, and she scheduled me for a 14.5 hr. microvascular surgery where took part of my abdominal flesh along with a vein and piece of artery and resculped for me.....perfectly comfortable breast, the same size that God gave me, that fit my torso, and look TOTALLY REAL.  My husband and family could not believe the miracle that she worked in my life.  The comfort level is like what God gave me.

 

So, my advice is, listen to the advice that Dr. Phil has provided from a good doctor, then do your own research on Dr. Feng.  Dr. Feng is not your typical 90210 doctor, or your chief of plastic surgery.  She is a surgeon with a passion and a gift.  I believe she was the youngest woman doctor to graduate from Yale medical school.  She'll ask questions that no other doctor thinks to ask.  This is your lucky day to be given her name.

 

I did not leave my personal information on this site.  However, I give Dr. Phil my permission to give you my personal info, and you can call me.  Also, I would like to offer you round trip frequent flier tickets to Cleveland to see Dr. Feng, and can possibily provide these if you decided to have her do surgery.  My husband is an engineer that travels a good bit and always has extra tickets.  I would love to see you get the meaningful help you deserve.  Women in America deserve better.  This would be a whole lot more serious problem is it were happening to the testicales of male doctors.

 

Two books for you to read:

THE SILICONE BREAST IMPLANT CONTROVERSY by Vasey & Feildstein

and

INFORMED CONSENT by JOHN BYRNE

 

Today, I am a fully functioning 62 year old grandmother of two sets of twin toddlers.  I moved to my current town in 2006 to help my daughter with her premature twin boys that came home on breathing monitors with high rish for SIDS.

 

I will keep you in my heart and on my mind, and I hope you get help from Feng in Cleveland.  She is not my relative, nor do I get any kick back.  My interest is purely humanitarian because I HAVE BEEN THERE!

 

God bless you.

How true!  And I hope Dr. Phil's staff goes the extra mile and lets these people help each other.  As an implant victim, I can tell you that telling a person not to get implants because your own failed, almost never works.  You're much better off telling them that they now look trim and if they get implants, they will look fat because their breast buttons will gap.   That worked one time when I tried to help someone not make the biggest mistake of their life.

Advice is:  choose a doctor very carefully.  My mother had surgery to correct pelvic organ prolapse on January 12, 2007.  The doctor damaged her colon and she died of sepsis on February 17, 2007 (never left the hospital)

I took my mother Martha to Mayo Clinic in Jacksonville

Florida  a fter 3 years of sores, she scratched day and night.  She had sores all over her body.  they told hert he same thing that the Dr's said on your show.  scabbies etc.  gave her endless perscriptions.. at

Mayo, and I love Mayo Clinic, after the entry physical they found a possible tumor on her lungs.  Her Phy

in where she lived, who I never liked, knowing she was a smoker earlier in her life did not xray annually

So Mayo thought this could be the problem.  After the most difficult and my mother was over 70operation  at Mayo they are the most competent.    When she would  sleep she would scatch and wake up with blood

on her pj's from scatching.  Awful

 

The sores were worse.         When  she would sleep she would scratch andwake up with blood on her Pj's awf ul         The Dr's told us Dermetoligy was there weakest dept.  So my mother asked me

to take her to my Chinese Dr.  

 

 Dr. Chang Ho,  I asked him (do not mislead me) can you cure this condition? He said yes,   Have you

ever seen this before?  He said  Yes.   How long will it take?  He said :  the treatment you will have to

follow will last 90 days, what ever is left you will just have to live with. 

 

He said:  Nancy most people are not willing to follow such complicated process. I know you will

 

I had to cook down chinese herbs, 3 concentration.  Mrtha had to drink some twice daily (it tasted awful)

and I had to dab the liquid all over her body.  Stinky and made her skin yellowish.

 

Dr Ho studied with masters in china and they have been working on medicine for 2000 years.

we also used( and I eventually bought this electromagetic lamp, developed by the Chinese Aero Space)

We use this on my mother up and down her whole body every inch.  every day,  plus acupuncture 2 times weekly

 

WELL,  approx 75 days my mother began to shed her skin like a snake and the new skin was smoothe

and no sores.

 

Dr. Ho said this healed her inside like liver etc. because this was also on the inside.  all her scratching

stopped.  

 

American Dr need to be willing to explore other approaches.   The arrogance of we only know.  It must

be proved by our standards,  is not helpful.    My mother had a much better quality of life because of her willingness to be open.

 

Nancy Mitchell

 

 

Dr. Phil...I am a 47 year old mother of five. I have in the past year been losing hair that I have noticed. I went to a Nurse Practioner in February this year. She did a thyroid test, a complete blood count, and a pelvic Ultrasound...all normal. She seemed to think it is stress. I also had a problem with my knee...she sent me to an Orthopeadic Surgeon...who said it is Osteoarthritis. I believe I also have this in my right shoulder and both hips....although only my knee was mri'd because I didnt tell her about the other joints because I didnt connect at time. So the other joints have not been checked. Anyway...I have been having irregular periods sine December of 2007...the last two were regular and normal....she never said for sure if she thinks I am Pre-menopausal...although she talked about it. I asked her recently to refer me to a dermatologist...I went last week to see one...He prescribed me a shampoo to use called Nizeral, and asked me to do a hair loss count everday for ten days. I have very dry, itchy scalp and hair. I did start putting tea tree oil in my shampoo and it has helped a lot with itching. I also have a lot of flakes. The derm told me that he thinks what is going on is that for example I may be losing 10 hairs and only growing 9 back. He thinks it is genetic. Alopecia inherited from my dad maybe. My  mom passed away at 53 so I dont really know about her....my dad passed away at 76 and was almost completely bald on top. I have not noticed any of my five brothers or sisters losing hair. I have one sis that lost a llot of hair upon giving birth and she was told but not checked out that it was probably due to a big hormone drop from giving birth. I have started the hair count. Thursday I lost 136 hairs....Friday...381(wash hair that day) saturday I lost 50, and Sunday I lost 123 hairs. I would just like to know what you might suggest....I am feeling very self-concious....I have always had a head full of hair before.

dr. phil, after listening to your lead in -- the part about a woman having these disgusting lesions that result in a fiber like growth from the lesions, I found the sugject so disgusting, that there was no way I could watch the rest of the show and immediately tuned out.....  the graphics were absolutely disgusting......   maybe the rest of the show had some interest and merit, but the lead in certainly kept me away, and I am a regular dr. phil listener