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Post by kiki on Jun 13, 2009 19:25:52 GMT -5
He said he knows people who have been symptom free. He said he wouldnt say exactly what meds they took but then said something like if he solves this he will tell us immediately because it would be unmoral not to (may not be exact words but meaning was same). I understand his professional caution but it really really bothers me that its not shared. Even if he asked them to post it so it wouldnt come from him. If someone has been symptom free that long, its just plain mean to withhold what they took and not even give us the chance to see if it would help others. Is it unfair for me to think this?
THIS IS NOT A BASH. Just a peeve.
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Post by lilsissy on Jun 13, 2009 19:32:31 GMT -5
DITTO
Jen
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Post by toni on Jun 13, 2009 19:46:52 GMT -5
I suppose I can see the reasons why (some might withhold some of that) because if we didn't go to a doctor for the meds (to be sure they were safe), say we ordered them online or something after we found out what they were....and we had a lurking illness for instance, that some particular med taken would do us in, (by mixing the two) because of an underlying problem...??
I don't know, I guess that's the ONLY reason I can see being that way, but then the other side of me says:
I think it's down right inhumane to allow people to suffer as we are, and die horrible torturous deaths, without SAYING and letting us find our own ways, cause WE'RE ON OUR OWN ANYWAYS...so WHY NOT TELL US?!!!!!
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Post by mrcommonsense on Jun 13, 2009 20:44:49 GMT -5
Dr. Wymore basically responded to my blogging about a month or so ago, here the statement he makes at the end of the post tinyurl.com/n6k7j7Cure is a word I am hesitant to use, but I have met one person who has been symptom free for about 3 years after discontinuing treatment. That person reported that they did a long-term course of high-dose antibiotic, anti-fungal and anti-helmenthic meds. Several people have claimed to be cured, but this is the only one I have personally met that has remained symptom-free for multiple years after discontinuing all treatments. I am not a physician and can give no recommendations for treatment. This person was not seen or treated by any physicians at OSU-CHS. I am merely passing this information on as a personal observation. I will keep working to try to identify the cause of Morgellons. At the moment I have no research-based, front-runners for the cause.Personally, I don't recommend that tactic, how many here have tried the exact same thing?
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Post by bessie on Jun 13, 2009 20:51:03 GMT -5
Kiki -
I didn't attend the conference, but I have the DVDs and listened a couple of times. He said he knew of one person who was "cured" through antibiotic treatments. I am assuming the person is one of Ginger Savely's patients, as they communicate. He would have to know that the person had Morgellons, and then no longer had it. Since he doesn't have a "clinical practice" it would have to have been someone's patient that he knew.
Dr. Savely does not have a protocol per se; like any practioner worth their salt, lots of lab work is done and treatment is adapted to the individual's own medical profile. There are other people who are symptom-free who are patients of Dr. Staninger's (I am very close to it, about 99% and have been for nearly a year and a half). Like Dr. Savely, Dr. Staninger's protocol is adapted to the individual patient depending on about 25 individual blood and urine tests. The difference is that Dr. Staninger uses natural means and does believes that prescription medication can have adverse effects on people with Morgellons.
And then there is JWF's protocol, which is readily available here. John, his wife, and his mother in law are all symptom-free for several years using the protocol he developed. Why don't you try it?
Bessie
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Post by Jill on Jun 14, 2009 7:55:31 GMT -5
The person that remained symptom free for 3 years after they discontinued treatment is most likely what was learned at the Conference: lyme-fiber-disease.proboards.com/index.cgi?board=audiovideo&action=display&thread=520tinyurl.com/ogfo98Conference on strange disease held in Oak Hill area Fair use Excerpt: Savely doesn't know why the de-wormers are effective, since there are no "worms" found in Morgellons patients but suspects that they are in someway toxic to the pathogen. When she prescribes them, she says patients experience an immediate worsening of lesions and of the crawling, biting and stinging sensations, which she attributes to a "mass-exodus" of the fibers out of the skin. "I do warn patients, you're going to get worse before you get better. That's to be expected, and the majority do get worse before they get better." But she says most patients do get better, although not all become completely symptom free. One of Savely's success stories stood up, a woman who Savely said was at one time totally debilitated by the condition but has now been symptom-free for three years.
Despite the success stories, some in the medical community feel Savely's treatments are dangerous. She was forced to leave the state of Texas when the medical board put pressure on her sponsoring physician and she could find no other Austin physician to work with. She now practices in San Francisco, California where the laws governing medical treatment are more liberal. She says she carefully monitors her patients' liver function and blood count over the course of treatment and has seen only on very rare occasions, very minor adverse affects such as a small elevation in liver function, which she says she easily reverses by reducing the medication. "It sounds scary to the pharmacist and they will try to scare you, but I just haven't seen the problems, and people tolerate them (medications) very well," she said. Although Savely is willing to treat the disease now, everyone agrees that finding the cause of the disease is necessary to find the most effective treatment. The Center for Disease Control (CDC) is currently investigating Morgellons but they have not published any findings. But other researchers are also looking into the cause. One such researcher who spoke at the conference is Dr. Raphael Stricker, MD, a clinician who, like Savely, treats Chronic Lyme and Morgellons patients in California. Morgellons skeptics dismiss Stricker's research because he was fired from the University of California in 1990 for allegedly suppressing data in a 1985 research paper on AIDS that would have contradicted his hypothesis. But Stricker has consistently denied the charges and Lyme and Morgellons message boards abound with patients posting messages in his defense. end excerpt This information should be widely and FREEly distributed
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Post by Jill on Jun 14, 2009 8:54:54 GMT -5
He said he knows people who have been symptom free. He said he wouldnt say exactly what meds they took but then said something like if he solves this he will tell us immediately because it would be unmoral not to (may not be exact words but meaning was same). I understand his professional caution but it really really bothers me that its not shared. Even if he asked them to post it so it wouldnt come from him. If someone has been symptom free that long, its just plain mean to withhold what they took and not even give us the chance to see if it would help others. Is it unfair for me to think this?
THIS IS NOT A BASH. Just a peeve. Kiki, Did Dr. Wymore speak to you and say this ? Also, you didn't mention how long "that long" represents in your post . (years, months, ) Thank you, Kmarie Good questions, Kmarie. 3 years plus- would have made a big difference in my life right now- 3 years plus ?
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Post by kiki on Jun 14, 2009 17:24:10 GMT -5
This was what I read: When something common to most with morgellons is identified, the information will be made available as soon as I am covinced of the relevence. Clinicians and those suffering from morgellons will know long before a publication is out. To do otherwise would be immoral in my opinion. I guess when I read his remarks about knowing people who have been symptom free, I focused on 3 years symptom-free . My desperation to feel well made me think Well if more drs KNEW about this, some would be more willing to at least try to treat this. Some drs just truly dont know what to even try. It would at least give them some sort of direction to try. Its probably unfair but I dont feel good and dont particuliarly care if Im fair and I thought, Well if more people could try those meds maybe there would be more symptom free people!! Randy if you hear about this, I will add that I know youre not mean and you are a professional. I also know that you are one of the brave pioneers willing to be public about your involvement with morgellons.
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Post by bessie on Jun 14, 2009 20:38:21 GMT -5
Let me repeat. Dr. Wymore does not treat patients, he only does research. This patient that he referred to at the Austin Conference. She wrote this a few years ago for the NMO website, and I copied it (below) for you to read. Reportedly she has improved even more since writing this, and is considered...well....cured, though I prefer symptom free. The meds she took are listed, though the doses, timing, etc, were adjusted over years and depends on the individual's particular needs and labs:
The Carol Arledge Story
Dear Morgellons Patients,
I have had Morgellons for over five years now. I have been in treatment for Morgellons and Lyme for almost four years. I am so much better. My mental function is vastly improved, and the lesions are greatly diminished in number. My antibiotic cocktails include Rocephin, Mepron, Minocycline, Zithromax, Flagyl, and others. I have had the greatest success in applying Colloidal Silver directly to my lesions. The healing time is drastically reduced.
My quality of life is so much better. The brain fog is vastly improved, ability to focus is almost normal. and my short term memory is improved. I still struggle with fatigue and unrestorative sleep (maybe I just invented a new word) but have learned to follow my body's requirements instead of fighting them. On good days, I celebrate and enjoy what I am able to do to the fullest. On other days, I rest and try not to regret my inactivity. Ginger once told our Lyme recovery group that "your energy is like gold---spend it wisely." Good advice, and I try to remember her words and apply them.
"I am so grateful for the recovery I have made and try not to ever take it for granted. I believe that a large part of defeating this disease is in learning about its effects and diligently working on my attitude. Many people do not understand. This makes us feel alone and "different," but we do not have to accept this. WE know it is real, and it is up to us to do our best to fight it with all possible weapons while accepting that our life can be GOOD even while it has become different. Yes, I have had to forever give up certain aspects of health and certain activities, but life is, in its essence, a process of change as we go from one period to another. I hope to glean the utmost from the place where I now find myself instead of wasting my remaining life by regretting what has passed on.
I am thankful for the blessing of the wonderful health care which I have received and I intend to keep fighting on for the very best recovery I can have. Perhaps we can all anticipate a day when research will afford us a readily attainable CURE. Until then, I am doing pretty darn well and so much better than I could have ever hoped when this miserable disease began.
Carol Arledge
Texas"
Bessie
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Post by toni on Jun 14, 2009 23:01:02 GMT -5
Thank you Bessie
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Post by Jill on Jun 15, 2009 5:32:26 GMT -5
Glad to know that Kmarie! JWF has been telling everyone for years that there is a way- I'll have to look at Stephen Buhners' book too! If Carol Arledge is the person under the care of the Stricker/Savely Team then there are others- posters on another board who also claim success under the care of Dr Harvey (since retired I've read). So that means that there are 2 groups of professionals affiliated with this condition and these boards that have the knowledge and expertise to bring people to symptom-free or near symptom-free status.
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Post by mrcommonsense on Jun 15, 2009 8:11:31 GMT -5
By the definition given above I am also cured. I am in incredible health besides Fibro, which isn't that bad, my skin is perfect, I get crawling every once in a while but I believe that is when I come into contact with mites which I (and we) have become allergic too. I've got muscle again too, I look strong. It took 3 years to figure it out and unwind it, but I did it. I might have whatever causes Morgellons still in my body, but at this point I don't think I experience any real symptoms from it.
I believe you can find your way out of this mess if you follow my "Terrain" post and stop the antiparasiticals and antibiotics and just focus on the terrain, all natural. I never really cleaned, only washed my clothes in Dr. Bonners and use the Sulfur soap on my skin. All natural is the key, and my protocol is so simple yet so fundamental for essential health, if you read John's comments on my thread you will get a good idea why it works, he knows his stuff.
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Post by overandover on Jun 15, 2009 12:39:57 GMT -5
Kiki I sure understand your concern about being told right away, the suffering is just to much, but I do want to share my concern.
I too was treated very aggressively and I'm doing so much better with symptoms, in fact I only have three very small unhealed lesions and only one symptom left and thats my hair still produces the tiny white fibers, although they don't itch or re-enter my skin. I only feel the crawling sensation when i pull out a ugly fat chin hair and then with in 3 seconds i feel it. By the way gang I figured that one out. I have always after pulling out one of those fat hairs immediately looked at the hair with my loop or what ever i was using at the time, digi, loop, microscope.
So wondering why I felt that and sometimes seeing that very small white fiber hanging on to the root of the hair or coming out of the root it self after a few mins. of drying, I decided to watch the hole on my face where I'd pulled out the hair and sure enough sometimes they come off the root under the skin and then with in seconds they wiggle their way out to the surface and are on my face, once there I've seen them jump and then i feel them on another area of my skin or they wiggle away and i feel the crawling, they move almost like they are magnetized, sorry it's so hard to find the proper words to describe the hell we feel. I have pulled out hair on my head by the root and sometimes have those small white fibers attached to the root are very very long like over a inch.
So now I wonder do they mature and change to the blue and magenta colors under the skin? do they turn black as they age? I wonder that because sometimes I see see a faint blue or red color starting in some of them, so are they aging?, growing a protective coating? So many question, no answers.
Sorry I got off track there folks, ya know I do that.
I have been torture FREE for over a years but I do know i still produce the small white fibers, but I've seen none mature so to say. But, I won't call myself cured until I stop making theses fibers
I was on high dose antibiotics, doc. changed the type of antibiotic about every three months, was on doxy though about a full 6 months and then Rafampin (sp) about a full 6 months or more, hard to remember. At the same time I was taking all three of the parasite meds, some every day for a few days, then monthly, some once a week, some every few weeks. And at the same time I was on the fungal medications and he changes those every few months also depending on my symptoms. Also at the same time I was on so many herbs, vitamins, Nutra Silver, so many different things, I was on a very high dose regimen and used to tell him it felt like chemo. Well as of this week and having chemo. for the first time three days last week I'm here to tell you, so far the chemo. has been easier then the Morgellons treatment, by far, so far, may not be saying that in the few few weeks though.
Now HERE is my concern, and don't get me wrong I WAS HAPPY TO BE A GINNY PIG, very willing, I thank GOD for that doctor and always will, he saved my life, BUT To this day we don't know what made me better, I was on so many things so how could we know?
You know I was starting to get a bit of relief after I found this board, long before I found a wonderful Doctor willing to go at it hard because he suffered from it also and took all medications himself before treating me, but still we don't have answers to what really did the trick.
I was getting relief from John Blue Sky's protocol and pretty much remained on it. So maybe that did the trick, who knows. I do know cats Claw is the bomb and everyone should take that.
And the Menthol crystals I know runs them out of our homes.
I get concerned when the researchers (God Bless Them) give out the information before the proper channels, (like peer review) Most of us don't have doctors willing to treat, not even treating the symptoms is mean and cruel but they don't. I think they just want us gone and the fastest way to do that is DOP, gets us out the door and fast. It's all about the money sister and we take to long, the symptoms are too bazaar, they don't know, don't want to know unless it means BIG BUCKS. And I hear way to often that folks are taking meds. ordered from Mexico and a far, taking meds. for animals and worse.
I worry sick one day we will lose someone from a over dose of horse paste. But I sure understand why they do it. The suffering is beyond horror and no one gives a damn. Doctors know this is all to real, the word is out thanks to MRF and our dear late Ken Coles (sp, sorry Ken).
But still we don't know for sure what this is, what are those fibers? Yes we get the infections, Lyme, Micoplasma and so on. And we all know that fungus is involved, very involved. But the fibers, why? what? And I know I had the fibers long before the full blown symptoms and I think we grow the insects under our skin because we send out the fugal smell that attracts them to nest on us. But I know nothing for sure.
There is so much good information on this board for relief, not cure for sure but great relief. I urge everyone to do what works for them until we get firm answers. It's so so hard, the waiting.
You know I ask my Oncologist a few weeks ago why our immune system won't go after cancer because Cancer is sure not a normal cell growing and I though our immune system went after things it doesn't recognize as normal. He said thats why people get cancer in the first place, the immune system falters and we don't know why. I said you just described Morgellons, he looked at me sadly. He says very little about Morgellons to me, but seems to believe it's real.
By the way the diagnosis of Morgellons is all over my charts now. My oncologist, lung doctor, surgeon, Neurologist, all of them have Morgellons listed under all medical histories.
Now I call that cover your butts, but I'll take it.
I love you guys and pray the answers come today. I miss you all to, will stop in and keep in touch. Love, Suebe
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Post by kiki on Jun 15, 2009 15:39:41 GMT -5
I shouldnt have spouted off. I didnt feel good, was grumpy and basically whining. I took it out on Dr Wymore and it was immature of me. My mind twisted his words to suit my sour mood.
I was on jwfs protocol for over a year and I felt better from it for 5 months and then one day I woke up and it was like those 5 months were a dream. I stayed on it for another 6-7 months but it just wasnt helping anymore. I think all those toxic molds they found could be why. I know we all need to personalize treatment but Im too sick to be my own dr.
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Post by lilsissy on Jun 15, 2009 16:40:13 GMT -5
kiki,
We all get a little desperate but not all of us are not willing to admit to being imperfect .
That is so important and so are you, my Dear!!
I am sorry you are hurting!
Jen
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Post by kiki on Jun 15, 2009 17:56:58 GMT -5
Thanks lilsissy. I try to keep myself honest.
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Post by ibzahp on Jun 15, 2009 22:43:35 GMT -5
Kiki I can relate to being too sick to be my own doc.I am dealing w multiple illnesses and my ribivarin /interferon meds seem to worsen my morgs but unfortunatly my doctors treat the morgs like the pink elephant in the room that they refuse to truly acknowledge. No one is calling me dop per se but they aren't trying anything to treat me either. In fact when I told my primary doc that i needed s0ome more fungal shampoo she said well why is that problem back and then she thought for a minute and said "well the interferon is supressing your immune system. I get a little frustrated and was thinking to myself "brilliant observation doc!." I am really hoping for a change we can believe in but I also am afraid it will be a long time coming. And time is precious.
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Post by toni on Jun 16, 2009 7:59:52 GMT -5
I remember a time when going to the Doctor was not " such an event" where the patient is questioned. Instead, they were there to really help people get well. THEY should be the ones also writing CDC like we are and questioning WTF is going on? Instead, most seem ready to blame the patient and not question the CDC or Insurance companies who have become dictators in the medical field. Just disgusting. DITTO
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Post by kiki on Jun 16, 2009 12:21:19 GMT -5
[shadow=red,left,300]I remember a time when going to the Doctor was not " such an event" where the patient is questioned. Instead, they were there to really help people get well. [/shadow] That is so so true!! And when you only had one dr and if you did have to be referred to a specialist, they would schedule the appt for you and even send copies of pertinent info so the specialist knew exactly why you were there! So simple but so efficient. One dr that knew every med you take and why you take it. A time when the DR was the one to be alert for side effects, not the patient having to REMIND them. Inexcusable. Today it can be honest to goodness traumatic. Talk about immoral... its immoral that greed has resulted in drs unable to truly care for their patients. Its sad and shameful that in todays world there are people with debilitating illnesses and their only wish is that they didnt have to try to prove, diagnose, and self-treat. They simply want the the luxury of just being sick.
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Post by mrcommonsense on Jun 16, 2009 13:56:07 GMT -5
Its going to get alot worse folks, when the government takes over health care you will have cost / benefit analysis playing a major role in deciding who deserves to live or die decided by beauraucrats , trust me, we will be denied treatment, we die under government healthcare .... To top it off the FDA will soon have all natural remedies/vitamins/herbs taken off the market as they are working hard to do on big pharma's behalf. Oh, and forget about sueing a doctor or friendly service, the gubberment will determine what tests are done and which ones aren't so doctors will be free'd from such hassles, they will not have to run a ton of tests for fear of being sued if they miss something. We will be managed like a comodity, a crop if you will.
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