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Post by junebook on Aug 9, 2006 23:27:35 GMT -5
I hope you did. I did, and I thought it was done well. Naysayers didn't hog the show. Lots of people we know were interviewed, like Randy Wymore, and Mary at Morgellons. org. The one thing that floored me and upset me was watching the disease advance in Morgellons patients, and the horrific neurological effects that ensued. Does anyone know if Anne Dill was featured? I'm sure it was her. She's convinced her husband died (?this year?) from l severe neurological problems. He was first diagnosed with Lou Gehrig's disease. She, and all three of her beautiful young daughters have Morgellons. The girls fear they'll soon lose their mother to the disease. Watching Anne's struggle to walk and maintain her balance, moved me to tears. Is that a done deal, I wonder? Do all Morgellons sufferers develop neurological symptoms?
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Post by DOCP on Aug 9, 2006 23:43:03 GMT -5
Junebook - There is already a thread started on this in case you wanted to copy/paste your post over there for less confusion. The thread is commissioned by "Ed" In any case, you don't need to... just thought you might want to know. Yes I believe the woman's name was Anne and three girls and husband whom passed on. It is definitely she. Weren't you able to watch the entire story? Wait, but you did see her walk. Huh? Okay, I'm not helping any. Now I'm confused. In any case... yes it was good and yes the progressive neuro manifestations are very scarry to look forward to... so lets not!!! I'm sorry for Anne... she presented great even if it was a feat for her physically. She's a pretty lady and three lovely girls. Some neuro can reverse. Depends on if "damage" has taken place... or blocking pathways is a cause. There are a slew of different circumstances and likewise... different outcome possibilities. Neurons can regenerate... can they not???
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Post by Ms. Kitty ( kraz as a kat) on Aug 9, 2006 23:51:05 GMT -5
know how Anne feels , i am deteriorating fast in the nuero/muscular/skeletal areas. struggle isn't the word, its a nightmare just to do the slightest thing and really keeps you down not only physically but mentally,both making it hard to fight this mes and do all the things you need to keep doing, it's now physically impossible. i need a miracle, and so does she and her girls. i am sure that alot of mine will not be recoverable but maybe it could at least be stopped in time before myself and others are totally incapacitated and then die. i would gladly take it all away to spare those lil girls this horrid nightmare. love to all ms. kitty.
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Post by Ms. Kitty ( kraz as a kat) on Aug 9, 2006 23:53:22 GMT -5
i thought it was good,but it did not convince my family members that are convinced we are all just nuts. i was hopeful it would. ms. kitty
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Post by zabrubon on Aug 10, 2006 0:34:28 GMT -5
This evening, my brother and my mom(from different states) both called me up to tell me about all the media regarding Morgellons. This is music to my ears. We are sooooo close.
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Post by Orion*** on Aug 10, 2006 1:14:50 GMT -5
I hope you did. I did, and I thought it was done well. Naysayers didn't hog the show. Lots of people we know were interviewed, like Randy Wymore, and Mary at Morgellons. org. The one thing that floored me and upset me was watching the disease advance in Morgellons patients, and the horrific neurological effects that ensued. Does anyone know if Anne Dill was featured? I'm sure it was her. She's convinced her husband died (?this year?) from l severe neurological problems. He was first diagnosed with Lou Gehrig's disease. She, and all three of her beautiful young daughters have Morgellons. The girls fear they'll soon lose their mother to the disease. Watching Anne's struggle to walk and maintain her balance, moved me to tears. Is that a done deal, I wonder? Do all Morgellons sufferers develop neurological symptoms? -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-==- June Bug---I am about 50% there right now---it really started hitting me in a neurological sense abot 3 years ago...If its not stopped soon I'll be in a scooter. balance --hearing--cognitive ability--sexual---just about the whole schmorgas board..;. orion***
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Post by glennb on Aug 10, 2006 1:29:11 GMT -5
Ms Kitty posted:
"i am deteriorating fast in the nuero/muscular/skeletal areas. struggle isn't the word, its a nightmare just to do the slightest thing and really keeps you down not only physically but mentally,both making it hard to fight this mes and do all the things you need to keep doing, it's now physically impossible."
Ms. Kitty,
How long have you had Morgellons? If you don't mind could you tell me your other symptoms and treatment you are using. I can totally relate to it being physically impossible to do everything you used to do. I have symptoms of Multiple Sclerosis, have trouble going up or down stairs, drop things more often and have balance problems. I also get fatigued way more easily. A few hours of house work can exhaust me to the point of barely being able to get up a flight of stairs. Also have problems with incontinence (minor problems so far thank god).
I also have Lyme (as almost all Morgellons infected do) and treating with Doxycyclin has helped alot.
I think the associated neuro problems are caused or worsened by a couple of the effects of this disease in conjunction with Lyme. The toxins that are released by the Lyme spirochettes and the toxins released by the Morgellons pathogen, plus whatever fungal infections we might have as co-infections are very damaging to the nerves and muscles. It is really important to clear these toxins out of the body as quickly as possible on a daily basis. This means drinking 8-10 glasses of pure water everyday, a glass or two of green tea and taking powerful anti oxidants, 300-400 mg of Lipoic acid twice a day, at least 10,000 milligrams( or to bowel tolerance) of ester C a day, taking probiotics with every meal and eating a couple of TBS of live culture, no sugar added yogurt daily.
Eat plenty of Organic green vegetables, no sugar, no refined carbs like white flour, no high fructose sodas or drinks, no alcohol.
Take Sun Chlorophyll tabs , 10 tabs twice a day.
Another thing that is very important to do is to support your liver as all these toxins plus the medications alot of us are taking put stress on the liver. If the liver is out of kilter toxins stay in the body longer. Following the above suggestions will help the liver plus taking Milk thistle a couple of times a day is excellent for liver support. It is also important to do a liver cleanse on a regular basis. Hulda Clarke has an excellent one, I'll look it up and post it. And this next suggestion may sound completely weird and gross but it really helps the liver.
Do a coffee enema ( I know this sound just too weird. For years I used to poke fun at a couple I know who started everyday off with coffee enemas), but I finally tried one and I am no longer laughing at it. I had dramatic results after just the first one. Coffee has a substance in it that stimulates the liver to release bile and toxins. This substance does not work if one consumes coffee in the ordinary manner but does work when coffee is used as an enema. Best to use freshly ground, brewed and cooled to room temperature coffee. A couple of cups should do it. If you are unfamiliar with the process ( as I was) the necessary equipment can be purchased at most drug stores. You should google on coffee enemas for more details.
After I did mine I felt better, had more energy than I can recall having in recent times. And my poop was green for almost a week. The green was caused by all the bile that was being dumped out of my liver.
Another very important factor of this disease that contributes to nuero and muscle damge is that Lyme/Morgellons uses up huge quantities of nutrients in the body leaving most of us severely deficient in many nutrients needed for proper energy metabolism, muscle and nerve function and for brain function. Lyme seems to devour magnesium with some Lyme patients having to be put on IV magnesium just to meet the high needs created by the disease. Magnesium deficiency will cause low energy, blood sugar regulation problems, hypoglycemia, weight gain, muscle weakness, muscle cramping, spasms and impaired mitochrondrial function in the cells (the mitochondria is where the energy we need is manufactured). Massive magnesium supplementation is needed for most, at least several thousand mg a day. Taking a couple of different forms of magnesium is necessary for the best results. In particular for energy production in the cells the Asporoatate form of Magnesium and Potassium should be taken together several times a day.
Lyme /Morgellons uses up massive quantities of VIt C and of B vitamins. Supplementing with a high quality vitamin supplement twice a day plus taking extra vit B is important. Ask your doctor if you can have vit B12 shots for a month. If that isn't going to happen the next best thing is to take the vit B12 nasally in a gel form or a sub lingual tab. Just swallowing it isn't as effective.
Lyme/MORGELLONS also affects our circulation, causing it to be sluggish. Taking Gingo Bilboa will help with improving circulation. Becausse of poor circulation my feet are uncomfortably cold at night and sometimes look bluish. I have been using those Japanese pads that one sticks to the bottom of the feet just before going to bed. They are wonderful. The pads have ground tormaline and other things in them. The ground tourmaline emits far wave infared radiation (or something like that), causing the feet to feel very soothed and warm. These pads also stiulate the feet to release toxins all night so in the morning when the pads are removed they are dark brown, wet and sticky. According to Foot Reflexologists all the organs in the body can be stiumated from the feet so suppossedly these pads stimulate the release of toxins throughout the body. Whatever. They definately are soothing, warming and make me feel better.
Other problems that are specific to this disease are lowered blood oxygen. Drinking a glass of distilled water several times a day with food grade hydrogen peroxide added to it helps. A company named Hi O Silver makes a product called Oxygen Water, several bottles of this a day is very beneficial. Follow the directions on the food grade hydrogen peroxide bottle as to amount to add to the water. Also soaking in a bath with a small bottle of food grade hydrogen peroxide added to it will help increase oxygen levels in the body.
Taking 300mg of COQ10 twice a day is very important. If you have the resources, go to an alternative Doctor with access to a hyperbaric oxygen chamber. An alternative Doc might also be willing to do Hydrogen peroxide drips which is more effective than drinking it in water.
Other serious damage to nerves and muscles that can result from Lyme Morgellons is inflammation. IMO it is important to control inflammation. I have found that I do much better when using a daily anti inflammatory, either aspirin or ibuprofen. Asperin also helps lessen depression.
Taking fish oil, evening primrose oil and other essential fatty acids helps control inflammation and helps protect the nerves and muscles. Taking a TBS or two of organic, unprocessed Coconut oil 3-4 times a week is a good thing to do.
Getting enough rest is of primary importance.
I think the damage to nerves and muscles can be controlled to a significant degree by meeting the unique nutritional requirements that Morgellons/Lyme creates, eating properly, taking daily antioxidants as described above, getting enough rest and purifying the liver.
Rife type frequency generators are another important tool. There is some research on the use of infrared light that suggests it might be helpful for certain aspects of this disease.
If I had known to follow the above guidelines from the time I realized something was wrong I believe I would be in much better shape right now with far less damage to my nerves and muscles. Even though I got a late start doing the above I feel that a significant difference has been made, to the point of being able to get out of bed and at least have something of a life. I would probably be in a wheel chair by now if I hadn't changed my life style to include getting a good nights sleep every night, started taking all the supplements and doing the liver support stuff and the antiinflammatories.
Additionally I have to constantly work to rid myself of parasites. Long term albendazole, a dose of Ivectermine every three months or so have helped me. Taking digestive enzmes with meals helps kill internal parasites. Topically applied DMSO helps. Herbal parasite remedies help, Antifungals (oral and topical) help. The frequency generator helps.
There doesn't seem to be a magic silver bullet to kill this monster, all out war waged from several fronts appears to be necessary just to keep it somewhat in check. Hopefully the day will come in the not too distant future when a cure will be found.
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Post by rickndebby on Aug 10, 2006 1:33:28 GMT -5
Hello Again.......The one thing that Deb and I have experienced since we realized that she indeed has Morgs has been how to explain this to family and friends......Tonight the light went on......The fact that we knew in advance about Prime Time's show, we urged our families and friends to tune in.......They did......Before the show aired they really didn't understand any of this.....They do now....I feel the piece was very well produced.....People that we tried to tell about this never seemed to grasp just what we were telling them.......I also feel that we are finally over the initial hump as far as getting the word out.....We still have a long way to go but..........wait.....is that.....wow....light at the end of the tunnel?? Let's hope the light gets brighter and brighter...........Best wishes to all.........Rick of rickndebby
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Post by junebook on Aug 10, 2006 11:02:54 GMT -5
Weren't you able to watch the entire story? Wait, but you did see her walk. Huh? DCOP
* * *
Yes, I watched every second of it. And yes, I saw her walking with the three girls. Broke my heart. She's so brave, and so are the girls. I had a good cry, then I got madder than **LL . Why, in my Father's name, has this disease been ignored for so long. And what gives our caregivers (doctors) the right to brush our complaints aside, avoid touching us, grin at our samples, tell us we're crazy, and quickly dismiss us, saying, "Got a busy day today, June," inferring my five minute appointment had screwed up his schedule? Thanks DCOP for the info. I'll look for the other thread you mentioned, and post there.
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Post by tonie on Aug 10, 2006 12:19:58 GMT -5
Junebook, Not to "ruffle" things up, but I'm realistically looking at all this as we all are of course: 1) The CDC "normally" investigates immediately when 5 people have the same thing if it's "unusual". 2) Doctors "never" ignore the patient consistently as in this case. Even if the docs thought we were out of our minds or exaggerating, they'd STILL look to see what they could see. But they're all doing the same thing, not looking, which that's NOT NORMAL either. We all know, in all of our lives, if we had a sore, a doctor would examine it, in case it were even cancerous, which they're not even "considering" that possiblity, they are completely IGNORING the sores without checking them out thoroughly. 3) The fact that thousands have been "termed" DOP, that's not standard practice either. 4) And I thought I'd never say this, that nothing seems to stop this. Look at all we've used, between natural supplements, and prescribed medications. This is what proves to me it's NOT normal, and that I can say without any doubt, that it's so screaming the words of something ( is ) being hidden, and so far no one really knows what to do, except continue to "write us off, and make us appear DOP as to keep the country from going upside down", that's how all this looks from my seat that that is what it's (((all ))) about - and NOTHING more. All are making sure that when WE speak up, there's always and consistently a DOCTOR in the story that will blatently say it's DOP and PROUDLY admits he's not even looked!!! Just as the doctor on the Medical Mysteries show last night, they said he's never seen a patient - yet he actually said the stupidest most obvious COVER UP I've ever seen, to say we're dilusional when he's not ever seen the patient! How obivious was that one? One would have to have rocks for a brain to think that makes any sense! How on earth can one make a claim that another is a classic dilusional when they've NEVER looked at the patient??? Now that should be illegal, what's the difference, may as well say I robbed a bank and convict me of that, EVEN when there's not one shred of evidence! I mean what's the difference? The energy and efforts that have been used clearly are MORE to make us appear it's DOP. To the point that they are deliberately looking ridiculous. Seriously, that doctor last night made a blatent statment, with ABSOLUTELY NOTHING TO BASE HIS STATMENT ON. My question is, what really was that about? I think I know, it's the secret, is what that's about, protecting it, period.
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Post by glennb on Aug 10, 2006 14:45:43 GMT -5
Excellent post Tonie,
What I've noticed is how the word mystery is always worked into media reports, ..."Mystery Skin Disease" ..."Mystery Fibers"..."..."a Medical Mystery"....
What I find mysterious is how the bug/worm-like parasites are never mentioned. I don't know about you but I have more than fibers, lesions and neural impairment, I have parasitic organisms under my skin. The info the media is presenting about Morgellons leaves alot of stuff out. Consistently leaves it out. Anyone willing to spend ten minutes carefully looking at these things under magnification should be able to tell that they are CLEARLY not skin. Why aren't the bugs/parasites acknowledged?
And why is the highly significant Lyme connection downplayed? At another board, last I heard 48 or so people with the typical Morgellons symptoms had gotten Lyme tests and ALL of them were positive for Lyme except for two.
I would call that a highly significant connection.
Mystery skin disease indeed, this thing infects the entire body. The only Mystery I see is why the **ck did the CDC take so long to arrive on the scene? Why isn 't more of an effort being made to do some MAJOR fund raising for this horrid, horrid illness. It's wonderful that some have volunteered their time and effort to help, and I am deeply grateful for their efforts, but if we rely on volunteers alone it's going to be a long dark road to reach the cure, if ever. We are WAY past the point where we should be relying just on volunteers. We need money to fund serious research NOW.
Another mystery... who is handling the important life or death (as in our lives our deaths) job of raising funds? A professional should be on this full time. Selling bracelets is all well and good but how long will it take to raise the millions we need for research selling bracelets and asking for donations from those who are Morgellons infected and already strapped for cash, barely surviving at poverty level?
I should live so long.
TIME IS FLYING BY, DAYS INTO WEEKS INTO MONTHS INTO YEARS....WHERE ARE THE FUNDRAISERS?...Is anybody doing more than just token fund raising for Morgellons?
I truly believe our lives depend on getting major research going on this. What is happening with fund raising?
SHOW US THE MONEY!!!
I wish the media reports would include the info that we are desperately in need of funding with a number to call to make a donation. Many of us can't afford even minimal medical care and treatment for our unrecognized illness, some of us have lost everything, our homes, our marriages, our social support structure, some are struggling to raise children, some of us haven't a leg to stand on as this disease eats resources while simultaneously making it next to impossible to work, and life ain't free. We need help on an individual level too.
Perhaps we could put a paypal donation banner on this site and ask for donations for research and extreme hardship cases, money to help pay for medications. It would be no big deal to get non-profit status and a bank account opened up to accept donations. I would be willing to do the leg work if the board owners will allow a donation button on the site
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Post by godog on Aug 10, 2006 14:48:52 GMT -5
AMEN, Brother!
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Post by sammy on Aug 10, 2006 16:05:45 GMT -5
GlenB Thanks for saying what needs to be said. Like why does everyone think we got months to wait on these people to do something, all the while it is still eating our bodies away. I feel it's August. They have watched us enough. I flat just want to give up. It's the same everytime, fibers. Hello? I have something moving in my bodie & it isn't fibers! In my muscles. Am at the point, they are going to keep dragging us along and do nothing. Money? Go tell the President that a plaque has been left to run for 5 years, can you give us some money before everyone in the world has this! Or has anyone thought that may happen? They have lied about this illness since day one. They know. They have known since DR. Schwartz. At least he told them. They flat didn't care. They want birdflu. Now where is the money for that coming from???
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Post by glennb on Aug 10, 2006 20:57:55 GMT -5
Maybe all the stuff about bird flu is little more than slight of hand, a distraction from what is really going on which is this horrendous Lyme/Morgellons plague. When the government starts screaming "Bird Flu! Bird Flu!" or "Anthrax!" (yeah right anthrax, go run out and by a case of CIPRO or whatever it was they were peddling, Windfall profits for those with influence in high places!) or "California Energy Shortage" (This manufactured energy scare triggered the largest transfer of money in the shortest time ever in history, billions sucked out of the pockets of Californians and into the coffers of Texas based energy companies in a matter of weeks).... well you get my drift.
When the hype starts I take a giant step back and try to peek behind the bogeyman they are currently shaking in front of us to see what is really going on.
It's all smoke and mirrors. Heglian dialectic. Herding the sheeple.
Of course if the gov really wants a bird flu epidemic you can be darn sure we will have one.
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leighann
Full Member
Morgellon's - The point where Nature and Man collide...
Posts: 158
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Post by leighann on Aug 10, 2006 22:32:00 GMT -5
Guys, My Mom is failing pretty fast, sliding out of the chair IN the doctor's office and they said she appeared to be fine, thought she was reaching for her shoe... ?? Then, she passed out after getting in the car when it was 97 degrees outside, and that was the natural temp, not heat index, then for at least TWO HOURS, in a car with a small crack in the window, she was passed out and another patient saw her, went inside and called an ambulance. She spent 4 days in the hospital two weeks ago and there is no explanation for her "episode"... Now, my Uncle, Mother's brother, who didn't know or admit until recently that he has this, is now in a nursing home, out of his mind, recently diagnosed with Parkinson's, loss of muscle control, speech, and severely neurologically impaired right now, my Dad's passing last August (with "something" he insisted be frozen that we still don't know what it is which still supports my claim he didn't die of Bone Cancer as the "bone leisons" indicated. )and my Sister's death last April from an assumed Seizure, which she only had recently after coming down with this thing...... I have not stopped pushing like I was before. Just trying to keep my family alive while I'm doing so. So far so good for me... no symptoms. Keeping a very close eye though. Neither has my grandmother who is 85 and who my Mom is living with right now. The interview with WKRG from Mobile, Alabama is still getting a lot of hits so I'm still encouraged. Ms. Broddie from Alabama who was very informative for me and my family, was featured on the prime time link, I was glad to see.... KEEP JANKIN' THE CHAINS!!!!! Of course the CDC knows what it is. They just are having to admit it now because of the tremendous push from all of us. We are winning small battles that WILL WIN THE WAR!!!!! God Bless from Leigh Ann Cofield from Alabama.
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Post by questionhair on Aug 10, 2006 22:45:48 GMT -5
Guys, My Mom is failing pretty fast, . . . Now, my Uncle, Mother's brother, who didn't know or admit until recently that he has this, . . .and my Sister's death last April from an assumed Seizure, . . . So far so good for me... no symptoms. . . . Of course the CDC knows what it is. They just are having to admit it now because of the tremendous push from all of us. We are winning small battles that WILL WIN THE WAR!!!!! God Bless from Leigh Ann Cofield from Alabama. Leigh Ann - I've wondered often if I've missed you checking in with the message board and how you are doing. I'm sorry to hear of your mother and Uncle getting worse. They are so lucky to have you with them through this. God Bless You, QH
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leighann
Full Member
Morgellon's - The point where Nature and Man collide...
Posts: 158
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Post by leighann on Aug 10, 2006 23:10:00 GMT -5
Thank you QH, You made my lip start to quiver.... I am thinking of all of you so much...I knew that I would find out why God called me to move back to Florence Alabama. Just beginning to really understand it all. I'm feeling as though I have more to come and more to do. Thank you so much. I'm so sorry for all the suffering.... My heart is absolutely breaking for everyone.
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Post by skytroll on Aug 11, 2006 10:20:18 GMT -5
Leighann,
Thank you for sharing that with us. This seems to affect older people and nursing homes are keeping mum on it.
Skytroll
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Post by tonie on Aug 11, 2006 10:44:11 GMT -5
Leighann,
I feel that one of the best things to do right now, till we get a handle on all this, is make sure your mom, and everyone keeps up with multi-vitamins, antioxidants and EFA's and B-Complex, it's important. Eating garlic supplements helps too, and I don't want to forget Vitamin C either and salt (if your health permits additional salt - the sodium chloride tablets)
And drinking lots of water daily helps "saturate" the bodies tissues with all the goodies you're ingesting.
That will keep the body strong. It won't rid this, but to keep on keeping on, you must stay healthy.
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Post by skytroll on Aug 11, 2006 11:35:15 GMT -5
If you can get some Relive. IT helped my mom.
skytroll
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