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Post by in tokyo on Jun 7, 2009 13:48:23 GMT -5
Hi everyone, I searched to see if anyone had reported on doing accutane against morgellons, but I don't see a thread relating to it. I'll report my results, maybe would be a help. Being that there's very little to lose in terms of health and longevity, I went along with my dermatologist's suggestion to try accutane for my "acne." It doesn't get rid of morgellons, the same spots are in the same places. But there are some affects: - The morg spots on the arms, chest, back, seat went away in the first month and haven't returned. - The chronic lesions around the mouth and jaw have gotten more shallow- the oil glands are being lovingly destroyed by the toxic medicine. This maybe gives the morgellons less food? Less soft tissue to grow in? At any rate, the morgellons spots now are very surface. It is like a carpet burn, with a papery scab, and from the scab there are still the little gel fingers that want to dig down, but they're much smaller and fewer. - Perhaps because there is less oily food or a worse environment, (?) the morgellons spots have been migrating. They began moving from their 4-year center around the chin in the first month. They are now up toward the eyes, on the nose, temples, very active in the ears, and for the first time ever, on the scalp. - Fibers are still there, itching is still there, sensitivity to using the computer is still there, fatigue still there... - It's difficult to say whether this or antibiotics is 'better'- after a month on good antibiotics, the organism learns and the antibiotics stop working. But at least this prevents those really deep lesions... So, the conclusion, at least for now, is that this medicine isn't a direct match for the problem. Not surprising, but at least I tried. Hope this helps someone if you're trying to ponder the treatment. I'll update again in a couple months, to say what happens after the medicine stops. (PS, it's a bit funny to see how perplexed my poor young dermatologist looks when I show up every checkup looking exactly the same! I haven't mentioned the 'M' word.) ~Take care and hope you all feel ok.
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Post by in tokyo on Jun 7, 2009 13:50:42 GMT -5
Oh, for the ease of using the search function, accutane can also be called isotretinoin.
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Post by toni on Jun 7, 2009 14:35:20 GMT -5
Thanks In Tokyo for the update on this.
I've taken Accutane (right before I knew what Morgs was) but only for 3 days in a row per month, "my doc" prescribed it as a way for me to control oiliness in my skin, as then I had "control"...by using the "side effects" only of what accutane causes.
Which the side effects are: after 3ish or so days of use, the oil glands reduce their oil production. Worked great actually, instead of blotting all the time with face powder.
Were you on Accutane "daily"? And had you done 30 days or more in a row straight with it?
I too had the thoughts of "if Accutane would help" being that it was a question too in my mind if Morgs liked our pilosebaceous units or not.
But since you've given them a 'dry' run with the Accutane, I guess now I understand, it's not that...or seems not that anyways.
I could "recommend" something that will rid your "area" that's like a carpet burn, as you said.
It's called Bismuth Subgallate and purchased either at Medichest.com or "some surgeons" offices.
It's a yellow powder, that is mixed with a few drops of water to a paste, then applied to the 'wound' and left on. After a few days, the wound shrinks up to nothing, and heals perfectly.
If there are (morgs) deep in the tissue though, the topical application of this "healing powder/paste" won't do any good.
I can PM you if you'd like more suggestions?
And thanks for relaying what happened with your Accutane experience.
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Post by in tokyo on Jun 7, 2009 15:05:27 GMT -5
Hi Toni, Thanks for the reply. I actually read your post where you mentioned taking accutane for brief periods before I decided to start the medicine, and it was a deciding factor for me- so thanks for that help! Yes, I've been taking the highest dose for my body weight daily for 4 or 5 months now. After the 1st month, nothing new is happening. Thanks for the recommendation of Bismuth Subgallate- that sounds great- because it takes so long for these wounds to heal, and who knows if they're active or not. Any more suggestions would be wonderful. I'm quite sick of what I've begun referring to as 'my nightmare face.'
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Post by in tokyo on Jun 7, 2009 15:47:22 GMT -5
Hi Kmarie, Yes, I tried RetinA previously too, when it was first out. Recently the derm has given me a lot of different topicals, none of them make a difference- they just irritate the skin. I wonder if retinoids has contributed to getting morgellons, or somehow making our immune system vulnerable? So many questions and so many new risk factors... I wish there was a scientist out there who knew what this was and where it came from and could tell us.
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Post by ctbarb on Jun 7, 2009 18:38:40 GMT -5
Hello Ladies! I was on the initial protocol for Accutane...took it for several years actually for severe pustular psoriasis. Then, at Duke Medical Center, I was on the protocol for the sister drug, Soritane, and have been on it for more than 15 YEARS! It has not helped the morgs one iota! My pustular psoriasis is only on my palms and soles, but were so bad that I was unable to walk, wear shoes, use my hands at all, and everything was wrapped in yards of wet gauze just to keep the skin on! I lost all of my nails, hair thinned out to nothing! While on both protocols, I was also taking Methotrexate every week. I no longer take the Methotrexate due to its side effects...ie interstitial lung disease...for one. Soritane is extremely expensive - for a one month supply it is over $1,000. I was on 100 mg/day!!! That's a huge dose. However, I get off it every once in awhile, and that is a mistake! I lose all of the skin on hands and feet, right down to the meat! I look like I have raw hamburger wrapping them. Not a pretty sight... Then, I was put on [glow=red,2,300] Remicade....DON'T DO IT!!!![/glow] The Remicade did work initially and totally cleared the skin on both hands and feet, however, the infusions every 6 weeks cost over $6,000.00 each! YES! That much. There are now many Class Action Suits against Centocor, the manufacturer, a Johnson & Johnson company. In the very early 60s, I was a personal secretary to General Robert Wood Johnson...owner of J&J. He was indeed a wonderful person and would be rolling over in his grave now if he knew this!!! The side effects for Remicade were not fully disclosed and some of them are: Tuberculosis (I was diagnosed with inactive TB recently), Lymphoma, Fungal infections (which I have) and other conditions as it relates to the aforementioned diseases. It also compromises the immune system and creates havoc with the body. Methotrexate was also taken with Remicade for better control! I stopped taking Remicade after 3 years. One month after stopping it, I was diagnosed with double pneumonia, had a 104F temp for 8 straight days, was in ICU for 6 days, and CCU for 5. I was clinically dead after arriving at the ER. Obviously for me, I did come back (after a very nice trip through the light), and have been sick ever since! They never did diagnose the type of pneumonia, nor the etiology of the sepsis. Then came the Morgs.....full blown! I knew I had something for 6 years prior, but nothing that couldn't be handled...when you have a disease like PP and you can't even walk or feed yourself, Morgs was a piece of cake. UNTIL, the pneumonia hit! I have been living day to day for the past 3 years and at present am suffering more than I can tell you. PLEASE, DO NOT TAKE REMICADE! It will not cure your Morgs, nor will Accutane or Soritane. If you have any questions about any of these drugs and what they will do to you, please PM me, I've been there, done that!!! Accutane and Soritane taken as prescribed are for specific uses. A tip tho...while doing the protocols for both of these drugs, I kept noticing that hormones affected the disease tremendously. After several years of telling my doctors that this was so, Duke Med. Cntr, hospitalized me prior to my period, and I could tell them exactly when the pustules would appear....and they did, every time. A blind study was done and those who received low dose birth control drugs almost totally cleared of normal psoriasis, men included, in fact they appeared to do better than the women. So, these diseases are affected by the body's hormonal system, especially in women of child bearing age. Anyone taking any of the 3 drugs mentioned above CANNOT and SHOULD NOT get pregnant! These drugs are TOXIC to the fetus! You are supposed to be told this prior to signing any document accepting to take the drugs. So, in tokyo, please be very careful taking any of these drugs...in fact, get off them as soon as you can, within reason. They have a long shelf life in the body. Sorry to make this so long, but there is much to say about these drugs and what they do to the human body. I have been on the maximum dosages for all 3, and they DO NOT help Morgs IMO. Love & hugs, ctbarb
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Post by in tokyo on Jun 8, 2009 7:25:00 GMT -5
Wow! What a story! I'm so sorry to hear about all your difficulties CTBarb. And I'm amazed at what a mess they will get you into by giving one bad idea after another. I hope by now you have found at least one good doctor who can take care of these things. There are quite a few of us who have taken accutane Prior to getting morgellons.........
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Post by toni on Jun 8, 2009 8:42:57 GMT -5
There are quite a few of us who have taken accutane Prior to getting morgellons......... I do believe I had Morgs (prior to taking the Accutane). I'd gone to this specific cosmetic surg because I'd had a bizarre thing going on with my pores (which is why he tried me on the Accutane). Approx 1.5 years before this doc and the Accutane, my pores opened up and my face became abnormally oily, (I mean I was like a grease ball) and it was bad - so this doc (Rullan in San Diego) felt that (because I didn't have acne) yet the oil production was extremely excessive, that taking the Accutane would help, which it did with the oil production in the greatest way. Completely balanced out my skins oil production and it was wonderful to not be blotting my face every 30 min. (I can't even tell you how bad the oil was) but it was bad. I was only the one "at that time" that didn't know what was lurking under my skin...as I found out later, it was Morgs. Then it all made sense of "why the excess oil production, and the enlarged pores happened. Then I worked on getting the "Morgs" stuff out of my face with TCA (20% acid) as I did TCA CROSS procedure. TONS, spoon fulls (literally) of blackish brown tree sap texture oil ran out of my face, literally, and after that happened, all my pores then went back to normal. See...at the time ( of taking Accutane ) it was only me who didn't know I already had Morgellons....but it was already there. ( I didn't want to blame Accutane as the culprit ) as I liked how it worked as I only took it for a few days a month, and it worked like a charm. Dr Rullan (himself) was against other doctors prescribing it "daily" for long term. He feels that a few days a month is sufficient long term, (as he talked about it with me extensively) UNLESS someone had a serious serious acne problem, then that would call for more of an aggressive protocol with it.
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