wally
New Member
Posts: 35
|
Post by wally on May 29, 2005 22:32:20 GMT -5
I am just reporting in from my entry from last month. I continue to make progress against the skin lesions using the Neutragena medicated makeup during the day and Miconazole antifungal ointment at night. It continues to be a slow process, but I have been heading in a positive direction for the past 13 months using these two topicals. I am about 98% cured of the skin lesions that I have been battling for the last four years. P.S. I am also still using teatree oil shampoo's and skin soap. I have developed a couple of theories about this disease. I think that this is several diseases going on at the same time, and the the original parasite or whatever it is carries these other agents. The parasites seem to feed on the blood of the human body which may explain the chronic fatigue complaints. I still don't think this is the cure, but if it is just a skin disease this may knock it out. It could be a systemic problem! I just don't know. With no help from the medical community and especially the dermatologists, the answer will remain unknown. If dermatologists were in charge of medical research, we would still be using leeches and bloodletting. NOTE: If anyone has been diagnosed as psychotic because they have this disease, be aware that according to Hippa laws you can enter statement into your medical records disputing the diagnosis. I will provide more info on this law at a later date, but it is something that I would highly reccomend pursuing. For one thing it is very annoying to doctors to have thier diagnosis disputed, especially dermatologists. The pimple cream peddlers (aka: dermatologists) think that because we fit some profile that they read about in college that we are all nuts. I am not going to make many more entries becasue I think i am almost over this and want to put it behind me. What a god awful experience this has been! Good luck to everyone else, my heart really goes out to anyone that has suffered through one day of this stuff. Wally TEXT
|
|
|
Post by susiebelle on May 29, 2005 23:55:54 GMT -5
AMEN WALLY I refuse to see another dermatologist. They have definitely been the most arrogant and rude doctors I have seen on my journey. I have been called a self mutilator and in need of deep therapy. another said I was a hypochondriac, and another said that I was obsessive/compulsive, and last but not least one at the Mayo Clinic said my hair loss was because I had trichotillomania(hair pulling compullsion). I have a pretty good sense of humor but enough is enough. I guess if you don't have skin cancer or want plastic surgery don't bother them.
|
|
|
Post by Faithfullsoldier on May 30, 2005 7:14:04 GMT -5
My experience with the derm. dr, is the same. I will have to say, after multiple doctors telling my husband, and parents that i am suffering from dop, during the time my illness was at its peak....i actually remember thinking, that i could not go on any longer fighting this illness and the torture of symptoms, my family, and the doctors. What did I have to gain by objecting to mental conclusion? Really, if I was willing to go with that maybe they would lock me up and give me enough drugs to put these parasites/mites/insects, to sleep.
However, upon careful contemplation of my options, i decided that nothing could be worse that in a straight jacket and have these crawling sensations all over. Can you imagine???
I am 39 years old, and never had any mental issues before, but after the doctor experiences, i almost became that way.....just not for the reason's they thought.
|
|
|
Post by debbie on May 30, 2005 18:36:12 GMT -5
The best of luck to you Wally
I truly hope that you have got on top of this & appreciate the fact that you shared what is working for you. Also thanks for the tip on disputing your doctors diagnosis. I know you don't want to come back & post (because you want to put it all behind you) which I feel many posters can understand.... So here's to wishing you all the best Wally & may life go on.... Best wishes.......
Hi Susiebelle & faithfullsoldier... sorry you have to be here (but at least your among friends who do understand you).... and yes how horrible to be in a straight jacket with the itches.... now thats torture...
|
|
|
Post by Faithfullsoldier on May 31, 2005 12:49:43 GMT -5
Wally....just want to mention not to forget to make more posts as you mentioned above. I realize not everything works for everyone, but in the chance it may provide relief is helpful.
I pray this suffering we all have endured with not go in vein....I would bet to say, most if not all of us, want to believe our suffering now will account for something later. I need to believe that way.
It's amazing how all of us are dealing with such a illness that can inflict such symptoms. We all have endured so many... losses... lack of vanity.... issolation.. changes of attitude about what's important in life.
This is something money, will power, doctors, friends, family, children, and others have not been able to fix or give answers. We all deserve a public announcement.
|
|
|
Post by Wally on May 31, 2005 21:58:28 GMT -5
I just wanted to add that I will be here for a little while yet, or as long as I have useful information to pass along.
I mispelled HIPAA in my previous entry so if you were attempting to look up HIPAA laws, sorry for the error. I will do some research as to the exact hipaa law that I am refering too. These laws have been in a state of transition for the last couple of years, so I want to make sure I am giving you up to date information. I will give an update on that sometime next week. I am extremely busy with other matters that require my attention right now or I would do it this week. the very least if you are given a diagnosis as dop, immediately give the medical provider verbal notice, and then written notice that you are sealing your medical records. Send a registered letter stating that no records can be released to anyone without your written consent. The new Hipaa law has severe penalties in it and the doctors will not treat any mention of the hipaa law lightly.
HIPAA stands for the Health Insurance Portablility and accountabiltiy Act. It is accessable on the internet at various sites if you would care to read up on it.
See you next week Wally
|
|
|
Post by spiderlegs on Jun 1, 2005 3:32:22 GMT -5
Our experience with the two dermatologists we've seen have ranged from absurd to ridiculous. One prescribed an antiquated anti-psychotic for my wife, the other said I probably got something from the dog, but I didn't have it anymore. Uuuuhhhh, then what's this? (takes off shirt)
|
|
|
Post by Newby on Aug 20, 2005 12:25:57 GMT -5
Wally:
I am very happy for you and hope that you will never have to look back. I am also very interested in the Hippa law, as at least 7 doctors diagnosed as having DOP. I was finallly diagnosed after my husband and flew to another state and paid for a series of tests. Once again much continued success.
|
|
|
Post by rickndebby on Aug 20, 2005 21:01:30 GMT -5
Hey Wally....God bless you as I truely hope that you have put this disease behind you...The " Hippa Law " does get my attention and I will research it more myself....If you do find your way back here please feel free to post any and all information regarding it....Best of luck to you in the future...Rick of rickndebby
|
|