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Post by victoreah on Jul 9, 2005 13:44:57 GMT -5
Nameless, I am so relieved that you have decided to hang in there. I feel like I have been in the dark places you have experienced and so many others have been too. And I agree that we need to wage this fight together. I have felt everything (emotionally) you have felt, although I never really felt abandoned by God - tested - absolutely - and I don't know why either. But I just figured it could take me forever to figure out WHY and never get the answer. Instead I extended every ounce of my energy to find answers about how to get rid of this crappy disease. Oh lord, I have experienced the doubts by friends and family, the discrimination, the doctor's ridicule, embarrassment, etc. etc. etc. I have to say that I don't feel it is right for the person who posted before me to call anyone stupid for not doing the full Schwartz protocol. It's never nice to call anyone stupid - for whatever reason. I did not do the full Schwartz protocol, yet I believe I am 99.99% well. You can read what I have done on another thread I posted today. I believe different things might work for different people. I am NOT saying the Schwartz full protocol doesn't work. It sounds as though it does. But that doesn't mean other treatments fail. As another person suggested - be good to your body - find a doctor who will prescribe the antibiotics, eat as healthy as possible, breathe good air, drink safe water, take nutritional supplementation, get some exercise and remain as socially as active as possible. (And keep coming back here for support!) This site has helped me SO much!
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Post by adapted on Jul 9, 2005 13:56:02 GMT -5
I sure was "stupid" then, huh. To think, two months of suffering. How long have you had it Jeff? I'm going to try to respectfully reiterate, we are NOT all the same. I believe there are too many coexhisting things to factor into the ENTIRE makeup of Morgellons, and we are far too different as individuals, as well. Perhaps for the more "simple version", Schwartz is dead-on-right about it. Not for all of it though. He ain't EVEN SEEN all of it. I guarantee he hasn't.
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Post by Bugs Alive on Jul 9, 2005 14:44:02 GMT -5
Jeff,
You obviously havn't experienced a severe case of Morgellons or you would have compassion for those who have. You shouldn't call people stupid that don't do things your way. Who the hell do you think you are, anyway? There's many facets to this disease, and Dr. Schwartz has never even heard of some of them. In all probability S. maltophilia isn't even the cause of any of them. Please wake up or shut up.
Bugs Alive
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Post by Nameless on Jul 9, 2005 15:55:08 GMT -5
SORRY YOUR STUPID IF YOU DO THIS WITHOUT DOING THE FULL SWARTZ PROTOCOL...COMPLETE IT..IM SORRY I HAVE NO SYMPOTHEY FOR YOU..IF YOU WASTE SUCH A VALUABLE THINGS SUCH AS LIFE..ON SUCH A STUPID DIESEASE..ITS NOT AIDS..IF YOU DO IT YOU ARE DEVALUEING THE GIFT OF LIFE..LIFE IS A MIRICALE IN ITSELF YOU HAVE NO RIGHT TO TAKE WHAT GOD HAS BLESSED US WITH..BUGS OR NO BUGS..ESPECAILLY WHEN THERE IS A CURE. Well now Jeff Baby...stupid I am not. Been on the protocol 2 months and guess what. Im not cured. So Dont assume and make an ass of yourself by talking about my situation of which you know nothing of. Im a little better but thats it. No major changes and thats the full protocol. And the next time you want to answer someone maybe you should think b4 you type. Still on tha damned septra. Let me quote you " I never had any bugs and I never saw anything move". Well I had and still have insects plus all the other junk, So go F urself. Plenty of flying and crawling INSECTS. But alas in the words of Forrest Gump...stupid is as stupid does. Maybe you found your miracle.......I haven't.
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Post by Nameless on Jul 9, 2005 16:15:44 GMT -5
And to you all who defended me thanks. Last week I was soooo desparate I took industrial strength insectcide and rubbed my body down with it and slept in it, hoping it would either give me releif or kill me.
Well I woke up a slight bit better and I was stinging all over but after a bath, I did have some releif. Now I have used Acticin over and over many times and it still after all this time has not killed the insects.
No medicine has eradicated it, just keeps it under control. Im better than I was a yr ago, but I'm still lousy, so what does that tell you.
I cant see a purpose in suffering this badly.
Life is a miracle, I see it everyday in other ppls lives. There is nothing I havent done in seeking treatment. No stone I have left unturned. I know some of you have had this for yrs. How you survived I dont know, but God bless you.
This isnt a bad case....I'm afraid its incurable now.
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Post by adapted on Jul 9, 2005 16:31:49 GMT -5
Dear Nameless:
I'm respectfully requesting that you please consider sending your email address to me at:
behavingmeself@yahoo.com
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Post by jodyann52 on Jul 9, 2005 20:59:21 GMT -5
oh nameless i so feel your pain rite now i can't see i have double vision .just started itching again real bad . i have cryed for two days.so i know how u r feeling.so lets hang on.maybe it will get better.
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Post by victoreah on Jul 10, 2005 0:34:31 GMT -5
Nameless, As long as you are BREATHING - there is NOTHING that is incurable! Do NOT give up hope. PLEASE!!!! HAVE you tried the glyconutrients that I mention in my protocol? It has worked miracles for me...it could do the same for you - no promises - just HOPE!
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Post by JEFF on Jul 10, 2005 2:29:25 GMT -5
yes i think suicide is stupid...i think this whole thing is stupid..and those who doubt how bad I was...all I can say is bad really bad...my old sheets are still covered in blood. i was fired..i think i could have died...( one morning i woke up with probably 100 full size fibers stuck all over my neck..when i touched them with my hand they burrowed or burned into my hand..I have had fibers so compacted that they were lodged like 1/2 deep into the skin..and appeared as one big rock..black and imbedded..I cleared the tough CDC standard for a real genuine lyme cdc positive.I had deep bloddy lesions from head to toe..my wife said this strange smell emitted from me..the worse was now over 2 years ago...since then ive been climbing out of hell..this thing was eating me alive..i had more dead tissue than alive tissue..i still never considered suicide..I do apolgize to the poster but you are the only person I have ever heard from to date that hasent had success with the swartz protocol...the only one..so maybe you need to stop downing insecticide...you might have short term results..but the damage is causing you to lose the war..do you exercise? even walk? i guess no medicine will work if that is your sole weapon..yes you do need your body to kick in some...and taking chemicals like insecticide cant help...even though you hate me i really do wish you well..but I dont like to beat around the bush. and the fact is if you curse god..he will curse you...you dont want to mess with god..the bible strickly prohibits suicide...there is changing your mind after your dead...You may find a cure next week..for all you know....this all could be 1 week..from hitting national news...we just dont know...I do know swartz is out there battleing for it..I even heard he is going to release a book about our condition...so dont bite the hand that feeds
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Post by susiebelle on Jul 10, 2005 4:49:59 GMT -5
Hey Jeff: Do you have an answer for me? I married my highschool sweetheart so I've only had sex with one person. We have been married for 31 years now. I never did any drugs legal or illegal. My husband were both fortunate to have good steady jobs. My two sons have college degrees and good jobs. I always felt like the luckiest person in the world until one day I couldn't raise my head off my pillow. I have always exercised and followed a decent diet so if you have any suggestions let me know.
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Post by adapted on Jul 10, 2005 5:03:31 GMT -5
Hope, Hi, there. Here is an interesting link, that I inadvertantly stumbled upon, to a free online petition service and a little description of them. Petition-them.com has been designed to enable the ordinary person to have a voice - the problem with ordinary petitions is that their reach is limited by the media they use. Petition-them has a potentially unlimited reach. It can be used to add weight to your cause at a very local level, or to influence government and large organisations. All petitions can be placed free and include a bulletin board and administration too. www.ethical-business.com/default.asp?sect=submitJeff, I wasn't implying that you hadn't suffered immensely with your illness. I'm aware of most of your history. I was implying that I am not stupid, and that I conquered this without Dr. Schwartz's assistance. I'd had an acute attack and there was no time to mess around, when I faced dying. Literally, I was dying. Two months was it, period. There wouldn't have been a third, fourth, fifth, nor sixth month of having symptoms, for me. When I'd heard the first mention of this disease, five months ago, and I came to this message board, it was from the outside, looking in. I kicked its butt, man. It's very apparent that the majority of sufferers have a chronic form. Because nearly everyone here has longstanding symptoms, is that not correct? Well, nobody could've had the magnitude of the illness that I'd had and still be around to talk about it, months, or years later. In case my point is not being well understood, just try to think about what I am saying. Use your noggin, "HONK-HONK". I've already been saying it, until I'm nearly as blue-in-the-face as you are, from advocatiing Dr. Schwartz. And I don't like to scold anyone, really, but Jeff maybe your approach could tolerate a little tweaking. It's only natural for anyone that witnesses name calling, and such, coming from someone who professes to want to offer their assistance, to not really care what that person has to offer. I know that you mean well, but there's so much negativity, that it sometimes rather outweighs a lot of what you say to people. Being a salesperson, you should know this. By the way, how is your wife doing at this point in time? I wish you continued success, as always, and I hope that she is well.
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Post by Nameless on Jul 10, 2005 5:08:28 GMT -5
I'm am not going to keep explaining anything. I said I did it all and I meant all. I didnt want or need lectures nor sympathy. I only stated that to say,that is how very desparate I was.
I don"t hate anyone, I dont have time for that. Some ppl are stronger than others. We all have our low points. And Im not going to argue any points. In fact I didnt ask you your opinion Jeff. Like I stated previously, my situation was and is different from yours. People get and remain well with different methods. The protocol is not a complete cure for me. I am not speaking for anyone but me.
I am not going to even respond to you anymore.
In fact being that I posted this thread, I hope Ant just deletes it.
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Post by susiebelle on Jul 10, 2005 5:30:53 GMT -5
You are absolutly right and when we are at our lowest we don't need advice we need kindness and compassion and to know that there is someone to understand. Tfhe guillt we feel for not being and doing what everyone thinks we should is the worst part. I want to die sometimes because I can't seem to get better and I know my family worries about me, but knowing that ending my life would make them feel worse is what keeps me going. Poeple need to realize there are different kinds of depression. Situational and some clinical and like the saying goes there is no worse critic than someone who has overcome their problem whatever it may be. susiebelle
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Post by ebgb on Jul 11, 2005 2:59:39 GMT -5
Hi nameless......just keeping an eye on u. I'm thinking of u and just wanted u 2 know.K? Stay strong, I know how u feel. Somehow I made it. Still fighting though. I care about u and hope u can find something that will help. You know thing's like that happen when u least expect them to. Soon, we will find an answer for everyone in every stage of this. Only listen to the post's that u know our caring, some people will just never understand, or will they? U never know. Tomorrow we may feel better and other's will get worse. I don't wish this on anyone, but they shouldn't post a reply if they don't know what u r dealing with. Love and hugs to u, EBGBGMS (((((((((((hugs)))))))))))))) u have no idea how much I'm thinking of u. u r not alone
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