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Post by victoreah on Jul 21, 2005 22:03:36 GMT -5
I know the letters MADD are already taken by "Mother Against Drunk Drivers" and that is a great cause...BUT I think we need to organize as "MORGELLONS AGAINST DUMB DOCTORS." (Please forgive me, Lord - I am just venting!) I want to scream because of the pain that I know a woman in Georgia is experiencing right now. Through a friend, she and I were connected and she is going through some hell on earth right now! I ask you ALL to pray for her. Her name is Myra and she is 63 years old. She was already experiencing some neurological disease which causes spasms and seizures before getting the Morgellons symptoms. Then she developed the horrible skin lesions - the they sometimes develop into staph infections. She has been to 9 different doctors in the small town where she lives. NONE of them can tell her what she has. She has PLEADED for them to give her a Lyme test and they won't. To top it all off, she fell in her kitchen and broke her left ankle and right hand. She has had to have 2 surguries for that. She is at her wit's end. PLEASE pray for her, please. I told her she needs to call one of those doctors and tell them they need ot give her the Septra, pronto! She has been on some other ABX, but not Septra. I do think that is the one the kicks butt! I have also sent her info on the glyconutrients, because I think the combination of the two is KILLER! But I am so freaked out MAD at the way doctors are about all of this. I swear ya'll - we need to make SOME KIND OF DURN LOUD VOICE TO BE HEARD COLLECTIVELY IN SOME MANNER TO WHERE THE PUBLIC AND THE DOCTORS WILL TAKE NOTE. (I'm not talking about anything violent or illegal - just taking a stand somehow - collectively.) Any ideas, ya'll? ?
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Post by Hope on Jul 21, 2005 23:41:14 GMT -5
Yea this pis*es me off too! I'll try to come up with some kind of idea. Peace, Hope
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Post by ebgbgms on Jul 22, 2005 0:18:31 GMT -5
This poor lady has it rough first of all being in a small town. I know how that is. She will have to find help elsewhere. Has she been to a neuroloigist yet for the symptons she was experiencing. I doubt if there is one in her small town. Now, I saw so many for years due to my so called "dystonia" not one ever tested me for LD. For 20 some yrs. no one did. with the ankle and wrist problem, she needs more support now then ever. she prob. fell because of the neuro problem. It blows my mind how doctors can be so blind and not even open thier mind to other posssabilities. The older u get the worse they treat u. I wrote a poem about that once. I will pray for her and hope that she is not alone. This is a sad story and I can see why you r so mad. God Bless her. She has to get to a neurologist and or a LD specialist. What kind of insurance does she?
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Post by Will on Jul 22, 2005 4:12:39 GMT -5
i hear samento can help nuero. forgot where i heard that .
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Post by pattiecakes on Jul 22, 2005 5:59:13 GMT -5
she needs someone to get her the H--L out of that small town. At the least to a LLMD somewhere. Doesn't she have any family? pc
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Post by bb on Jul 22, 2005 11:46:15 GMT -5
I wish we could all collectively sue big time for denial of medical care, just for the sake of making big news. We certainly have proof of payment for nothing.
Any lawyers out there?
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Post by victoreah on Jul 22, 2005 17:50:57 GMT -5
SOMEBODY has got to listen out there! I still can't figure out why not ONE of the mainstream news shows will do a report on this. We absolutely need a well-known spokesperson that could get the attention of the media and doctors. There has got to be a way to find someone willing to stand up for us! I have written letter after letter to the Oprah show - with no response. Excuse my language here, but HOW IN THE HELL do other people get on there for what I consider to be a waste of airspace at times?? I have written to 20/20, The View, my senator, my US Rep, The 700 Club, 48 Hours, 60 Minutes - all to no avail. HOW CAN WE BE SEEN AND HEARD. I may be well right now, but I will NOT stop my fight for all those who still suffer and for those who are yet to suffer if we can't be heard!!!!
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Post by unite on Jul 23, 2005 17:51:17 GMT -5
They will only listen to us, when we start listening to each other and truly having a common goal.
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Post by ebgbgms on Jul 25, 2005 1:01:58 GMT -5
One of these days, one of these days. Still praying for this poor lady. (UNITE) Mind is thinking.........what I have left is.
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Post by Morethanone on Jul 25, 2005 15:29:19 GMT -5
Please tell the lady to start talking to the docs doing her surgery, Hospitals can't afford to icnore anyone with even the slight posibility of an infection with S.Maltophilia. Maybe they won't do it for her, but they might do it for the sake of the Hospital and all that go in for surgery. Might work, I'd give a try anyway. In fact they might be able to grab up a good biopsy while the surgery is being done. Tell her not to take no for answer !
Moreover
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Post by J Jill on Jul 25, 2005 18:24:46 GMT -5
I get PO'd also- especially when I lost a friend last month. I've known this man for many years- he was husband to a dear childhood friend of mine.
He was gardening one morning- took a shower and then laid down on the bed and was gone.
He had been to numerous doctors to include the Cleveland Clinic. He got this 'stuff' from working with old shrubs in his yard.
I believe beyond a shadow of a doubt that he had Lyme.
His daughter has Lyme and she lived under the same roof.
His wife has symptoms.
Then there is my daughter- I've had her to all the 'best' doctors in town- and we purportedly have the best in the nation. Laugh here.
My daughter was bitten by a deer tick back in 1996. She has had numerous symptoms that doctors continue to attribute to anything except Lyme.
Last year, I finally convinced an alleged Lyme doctor in my area to test her for Lyme. Of course they did the wrong test at the lab. I specifically requested the Western Blots and she got the near-worthless Elisa.
Naturally, the results were negative.
Are we still calling this a cover up? Or are we on to the fact that it's more than that?
Writing letters is good for therapy for the writer- nothing more it seems.
The only help we are going to get is alternative medicine and our own research. Word will be spread only by grass root groups.
Just my opinions, of course.
I read about a man in my state that was nailed by various branches of the government for selling products using deceptive means. Aside from the Cialis (or some other name in his case), lots of what he marketed seemed to cater to folk like us- with our symptoms.
One herbal he marketed was for Chronic Fatigue. He had a lab formulate the stuff and became a multi-millionaire in less than 3 years.
So my point is this- we know, collectively, that there are products that help us- why the heck don't we get some help with formulas and purchase this stuff ourselves? Members only kind of thing so that no one gets nailed like the guy in Cincinnati that I mentioned above.
The knowledge is there. JWF has been attempting to steer us in the right direction for over a year now. Then there was John F before him doing the same.
So why don't WE put together a couple protocols or regimes and have a lab put together the products.
A 'for intance' would be to formulate a product that would deliver the vitamins, minerals and herbals that are known to help Lymies. The B's, C, Magnesium, etc. Of course it would have to have ellagic acid.
Liquid would be the best- more effective.
If lots of us committed to purchase the products, we could get a good price.
Food for thought.
Don't get madd, Victoreah- get well despite 'them'.
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Post by Dr jekyl on Jul 25, 2005 19:28:40 GMT -5
So true Jill. JFW helped a whole lot. He took the time to explain the whys and wherefores. And of course I have been on the pom ever since you found it.
A takers as Im willing to purchase from one of us.
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Post by victoreah on Jul 25, 2005 20:46:19 GMT -5
Jill ~ Thanks so much for responding. I am so sorry for the loss of your friend. And UNBELIEVEABLE about how your daughter is getting the run around - I hear it from so many others as well. I JUST DON'T GET IT - the attitude of doctors. I agree we have to take matters into our own hands! The problem is that the same things don't work for everybody! But it wouldn't hurt to work up a general protocol for Lyme with everything in one "package", so to speak.
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Post by itchingntexas on Jul 27, 2005 0:09:16 GMT -5
An idea about your friend, Victoreah: We could all send her letters, if you could give us her mailing address. Or even a P.O. box if you don't feel comfortable giving a physical addy on the net. She needs to know a lot of people care for and love her, if only in spirit. I also agree with getting her out of that town. Some family needs to be called, pronto. Is she a Christian? Perhaps church family would help, if so. If not, she needs to find another church!! Ever the zealot, Heather (Itchingntexas) PS: Vic, we are doing GREAT lately. Doing some other supplements, too, but mainly the silver, pararesponse (parasite cleanse), and glyconutrients. God is good. Your friend needs glycos.
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