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Post by Baraka Obam on May 20, 2013 9:48:08 GMT -5
I know this disease and its garbage bag full of symptoms for 40 years.
The disease is capable of damaging everything in the body, people imagine to days symptoms are the symptoms, I HAVE NEWS FOR THEM.
There are things to think about with the lack of skin issues, some people are afraid to be seen when their skin is wasted, also the people with bad skin may assume they have something other than LYME and I am quite sure they are right.
Is LYME, MORGELLONS, MORGELLONS LYME? I DO NOT BELIEVE THIS IS A FACT.
You are a brave lady, the sign probably got attention because many of these people are itching and have other attributes of our disease.
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Post by itchin4answers on May 25, 2013 21:40:48 GMT -5
Thanks Baraka, I was questioning being "brave" thinking what a risk I was taking, but it had to be done. You know I was blocked out of Facebook for 4 days, seems I could have been hacked (awful word). Not sure and I don't particularly want to know. I have nothing to hide and FB is a very useful tool to help educate and raise awareness about what is really happening in our world.
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Post by itchin4answers on May 27, 2013 20:22:44 GMT -5
What an absolute bugger - I'm having a second bout of shingles on my face in less than a month. Seen the doc this morning, back on antivirals and I have to recommence the Plaquenil and Doxy. I'm ok to do that because I was feeling this false sense of security that I was well. I'm not! and that makes me mad coz I want to be well.
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Post by Baraka Obam on May 28, 2013 10:53:19 GMT -5
What you did was brave I question my bravery some times. I know if I saw a man beating a woman I would jump in and try to stop the beating. Still I do not know if I could jump out there with my sign and get on the boob tube in all my glory. I hope your lesions heal quickly, something you may want to try, steroids with antibiotics. Doctors have been starting to do this, I have a feeling that the invader has its own on and off switch that can be affected by the steroids and POSSIBLY while its guard is down due to the steroids, then can be destroyed by the antibiotics. The problem, because we do not know exactly what drugs to use together we may not get the results we want. I used steroids alone for many years and they worked to HIDE the involvement while it developed probably quicker than it would have without the steroids. What I really question is while it was held at bay could the antibiotics have gotten deeper into the hidden growths and destroyed them. It is worth a try, but it is not worth a try for YEARS of treatment. Ask your doctor if there is a steroid treatment that will work in unison, lets just imagine this is not shingles on your face but our horrid disease. Who knows maybe we all have shingles, nobody has really taken the time to find out now have they. Here is a few sites to read, maybe what they say can help you. www.healthypages.co.uk/forum/head-neck-problems/3665-shingles-face.htmlHere are some treatments, steroids are talked about but it says they are controversial, read up on anything that says something like this. WHO KNOWS, www.webmd.com/skin-problems-and-treatments/shingles/understanding-shingles-treatment
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Post by itchin4answers on May 29, 2013 21:17:16 GMT -5
Thank you for those links Baraka. I'm kinda of the same opinion as yourself, who knows IF this is shingles. My GP put a light to the clump on my right cheek and said that it was different to a cold sore. I had the cold sore on my lower lip that cleared up with the topical cream. Then low and behold the next morning I had above my top lip the blister type clumps and the same on the right cheek.
I was hoping the GP would give me a repeat for the antiviral but no. So once I've finished this course I'm going to back to see her. Plus I do need more Doxy anyway.
When I have black specks exit from my right cheek this is what can happen the shingle thing, well it's happened 3 times since September last year. No idea what the heck is going on, though possibly this darn thing living under my skin.
I was on a steroid 5mg for 18 months in 2005/06 and oh boy did it have bad effects on me. However, I was taking Seroquel and Lexopro at the same time. I had a "swimmers back" I was over 20 kilograms heavier than I should have been. I developed the buffalo hump - I looked grotesque to say the least. Then I found out I was pregnant and had to get off the steroid quick smart.
I am scared of steroids, they do give one a feeling of a false sense of security thinking all is well. I'm in limbo once again about what to take with regards to prescribed medicine.
Yeah, who knows huh.
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Post by absurdlyhaywired on May 30, 2013 20:35:46 GMT -5
Hi itchin and all, itchin, I had shingles across my back many years ago and I remember having to suffer for a few weeks. And it was the worse pain ever! I know how painful herpes outbreaks are and I've smashed myself up wrecking my motorcycle and I now have this M, whatever it is and shingles is worse in intensity but it goes away. Of course I've never given birth so maybe that's worse? lol
I had wondered if one could get shingles more than once and I think that's possible. Now I wonder if the shingles vaccination would help after you've had shingles once. I doubt I'll be receiving any more vaccinations.
The last dermatologist I saw gave me oral steroids for 8 days I think, and when I phoned him to say I had no change he said "Well,you are in trouble then." And we left it at that...........(This was not about shingles.)
I hope you're not suffering with shingles on top of everything else, but if so it should stop soon.
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Post by Baraka Obam on May 30, 2013 21:42:58 GMT -5
Holy cows your a wild motorcycle person, is that why I get along with you, we talk the same realize,LOL, maybe the rest here are teatotalers, I guess!!
Maybe we can get them all to ride, we can start a scary gang,
Morganiacks, Flying Bugsters, 8 Leggers, Itchy and Scratchy gang.
What kind of motorcycle did you have?
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Post by absurdlyhaywired on May 30, 2013 22:26:53 GMT -5
A scary gang of our peers,huh? How about The Holy Moldy Rollers?
I wrecked my Honda Shadow 500-I blame the "marbles" in the intersection where I ran out of road. I repaired it -new tank-new handlebars blah, blah, blah. Rode my friends Magna750 during repair.
Now I have a 600watt scooter with a dead battery and probably a flat. I blame M for that. Just as well 'cuz I can walk faster on a rare good day.
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Post by Baraka Obam on May 31, 2013 17:14:11 GMT -5
I bought a 750 magna and a 1100 magna, it was pretty quick.
I bought them to sell but did take the 1100 out to race a few times, it was very quick.
Harleys are my focus, working on one right now to fix everything the previous owner touched, it sucks being a perfectionist.
it does not have to be a diamond when done but it must work perfectly and be safe, if possible improve the function.
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Post by itchin4answers on Jun 15, 2013 22:52:56 GMT -5
Hi there, sorry not been about in a while. My doctor had me take some blood tests for the herpes virus and the chicken pox virus. I should get those results this week. I'm taking the Doxy and Plaquenil, though only 2 Doxy a day, that's all I can handle. I herx every 5 to 6 days, it's awful, but I can handle it.
I was at the bank the other day talking to this guy a lot younger than me, anyway it came up that I had Lyme disease and he said "oh really, I've seen all those news stories on Lyme on TV". I was rather surprised that he'd even heard of it. What really got my back up is that he said "you seem to have Lyme well under control though"....huh??...what the heck??.... a two bit bank teller so called know all. That comment has really stuck with me because if you look ok everythings just fine, well it ain't. You see, that's why I don't tell people I have Lyme and definitely NOT Morgellons.
I'd made a call some weeks ago to a Memory Clinic in Melbourne. Long story short my Father went there and they really helped him, discovered he'd had multiple strokes. I left a message for the Neurologist to call me as I was wanting a second opinion on my brain scan due to late stage Lyme. He never returned my phone call.
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Post by absurdlyhaywired on Jun 15, 2013 23:47:31 GMT -5
Hi everyone, I think I may Have posted this link before but here it is again. This site can be helpful. Check it out. Especially The Spoon Theory. www.butyoudontlooksick.com/wpress/articles/sick-humor/sick-humor-the-top-ten-worst-suggestions-commonly-given-to-someone-with-a-chronic-illness/ I have a very domineering person bugging me lately to get to another doctor. She won't listen. I'll say "But I've been to 19 doctors". She'll say "The wrong doctors, you need to find the right doctor". I'll say "Then I'm accused of doctor hopping for attention". She'll sigh with exasperation and say"By who?" I'll say "By THE DOCTORS". This certain controlling, domineering person has done this before. She wants my help with some things but geeze- I can't even help myself right now. We haven't spoken since. (It's my landlady) I do give her credit, she's been battling the medical system 14 years now with an autistic son. She's persistent ,but I'd like her off my back, I know she cares but I see she only cares to do anything about me when she needs something. Anyway all's well in my m world here tonight. You know..........as well as........Hope all's well with everyone where you are.
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Post by Lynn on Jun 16, 2013 16:29:18 GMT -5
Hi Itchen
Hope the test come back in your favor. Need less to deal with not more. I am in a six year Chronic Fatigue study at Standford State university for chronic fatigue. Instead of payment they are suppose to release us our test results. They took like 8 or 9 different size vials of blood over 4 years ago when I was really sick with this. We the group are being tested for just about everything.
Hey Absurd
The link was sooo funny. Loved it. Wish the landlady would cool it. Sounds like she means well though. Have a good week end.
In Light Lynn/TorpedoLynn
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Post by Baraka Obam on Jun 16, 2013 17:16:48 GMT -5
Hi everyone, I think I may Have posted this link before but here it is again. This site can be helpful. Check it out. Especially The Spoon Theory. www.butyoudontlooksick.com/wpress/articles/sick-humor/sick-humor-the-top-ten-worst-suggestions-commonly-given-to-someone-with-a-chronic-illness/ I have a very domineering person bugging me lately to get to another doctor. She won't listen. I'll say "But I've been to 19 doctors". She'll say "The wrong doctors, you need to find the right doctor". I'll say "Then I'm accused of doctor hopping for attention". She'll sigh with exasperation and say"By who?" I'll say "By THE DOCTORS". This certain controlling, domineering person has done this before. She wants my help with some things but geeze- I can't even help myself right now. We haven't spoken since. (It's my landlady) I do give her credit, she's been battling the medical system 14 years now with an autistic son. She's persistent ,but I'd like her off my back, I know she cares but I see she only cares to do anything about me when she needs something. Anyway all's well in my m world here tonight. You know..........as well as........Hope all's well with everyone where you are. I have the answer to all your problems STOP telling people that do not need to know your personel problems. Your health worries are your own business, well, unless you come here, then the whole world knows, LOL
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Post by itchin4answers on Jul 2, 2013 1:19:32 GMT -5
Hi Itchen Hope the test come back in your favor. Need less to deal with not more. I am in a six year Chronic Fatigue study at Standford State university for chronic fatigue. Instead of payment they are suppose to release us our test results. They took like 8 or 9 different size vials of blood over 4 years ago when I was really sick with this. We the group are being tested for just about everything. Hey Absurd The link was sooo funny. Loved it. Wish the landlady would cool it. Sounds like she means well though. Have a good week end. In Light Lynn/TorpedoLynn Hi Lynn, the test showed I've had chicken pox, and the herpes simplex & zoster was equivocal, which is no help what so ever. All those years in a CFS study, I read CFS is a symptom of Lyme. I give credit to my female GP, she wants me taken care of and I'm awaiting an appointment with a Neurologist. My GP is wising up to this controversial disease very quickly, particularly since she told me "someone" had DELETED Lyme from my computer medical file, so she kindly put it back for me. The Australian Government, you pack of rotten stinkers, you know the refugees that live in my street are really nice people, but when you gonna help us walking wounded? I think 10 labels of mental illness for myself is a little excessive, don't ya reckon? BTW the last full moon was awful.
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Post by itchin4answers on Jul 2, 2013 1:20:25 GMT -5
Sorry about that I quoted Lynn's post and my post went in with it. I don't like the forum this way.
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Post by itchin4answers on Aug 24, 2013 6:38:25 GMT -5
Today Tonight Perth - Theda's legacy for Lyme recognition in Australia
Please share this video in support of Theda's final wish; to help raise awareness and ultimately bring about real change for other sufferers of Lyme Disease. Lasting change that will save lives and reduce suffering for those who are desperately ill, and to raise awareness to prevent others becoming as sick as Theda did. Theda paid the ultimate price, her life. Please help us spread the word, your support means everything.
tinyurl.com/lz99mst
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Post by itchin4answers on Aug 27, 2013 19:15:35 GMT -5
Hi Lynn,
I've just figured out how to post this video. Theda euthanized herself, it's well worth watching this video.
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Post by Baraka Obam on Aug 28, 2013 12:16:32 GMT -5
What a shame, I know there is a way out of that bed.
You have to force yourself to do all you can do, I know it hurts, I know its painful but you have to do it.
There was a point where I was sure I would die, my one arm was so painful I wished they would cut it off, then the muscles turned to mush, my hand on that arm was carpel and felt like a rock.
I could not pick up anything, then within days it spread to the other arm, the hand developed carpel tunnel, it took a very long time before I could pick anything up, still I worked with whatever I could pick up.
Working hard to lift only three pounds, it took months and finally I had a ten pound weight in my hand.
Things got better quickly at that point, but if I did not work it out I feel I would not have recovered.
This was all complicated by the appearance of lesions, I would not go out like that, where would I go, what would I do, I HAD NOBODY to help me, my energy was gone.
How in the world could I face people, I did it and it was hard, still it was done.
taking ones own life before crawling like a baby until one could stand again, this woman needed mental as well as physical help.
I had nothing but these sites to help me, nothing more then the Internet, when I went to the hospital out of desperation the doctors treated me just like a leper, $10,000 dollars later I was sent home without anything for pain, I was ready to end it all.
Yes life is about quality not quantity, but you have to fight for quality.
This woman needed enthusiasm. Its easy to accept a wheelchair its hard to take the first painful step.
I can't I can't is easy to say, I can I can comes with punishment and rewards.
There is nobody in China that gets free medical care or social security, they have to PAY for it, there are 1.3 billion Chinese, that is not a fluke, they do not breed like rats, the law is one child per couple, the reason, they have to work even if they are dying UNLESS a family member helps them.
NOW THINK, if the people work they stay better, even the dying, this is a fact, there are no free rides.
For instance, I saw a man in China, he had stumps for arms and legs, who knows why, diabetes maybe, anyway, his way of getting around was a axle that was placed in the center of his chest, the axle had pushed a indentation into the chest, that is how the axle stayed in place.
Not much of an existence, nope, but the existence was self preservation, maybe the mans sights were set very low, a meal, some talk with friends, maybe a beer, I do not know, maybe he had children that he wanted to see grow.
I will never know what kept this man going, if I would know Chinese I might have asked him, I tried to ask questions with a interpretor but they do not like to do this.
It is sort of like rude to start this sort of conversation in China, still interesting to me and possibly rewarding to a man that does not expect a moment of importance in his life.
I wonder if I can find a leprosy colony in Asia when I am there, maybe I can find something out, maybe I can get a test while there, maybe if I go there I can ask the doctors if their blood and fluid has fibers all in it.
That would be more than interesting to me.
I would bet money they do have these fibers in their blood and fluids.
Still its very sad we have no help with this, no help at all.
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Post by itchin4answers on Aug 28, 2013 21:11:00 GMT -5
Hi Lynn,
Yes the video is very tragic.
I'm not bed ridden at ALL I was 8 to 9 years ago when the Morgellons started.
I'm the best I've been since 2003. I am taking low dose Doxycycline (2 a day) and 2 Plaquenil twice a day. This combination seems to work well (at the moment).
Unfortunately the engine in my car blew up end of July so now we are walking and catching public transport. I do a lot of free advertising these days - such as wearing my "Lyme" T-shirt. I was stopped in a shopping centre about a month ago by a young woman asking where I got my Lyme T-Shirt - I told her from my Lyme friends for a Lyme event we had. She started to tell me her friend has Lyme and has had it for 8 years and there was going to be a fund raiser and it would be great if I could attend. I told this woman I had Lyme disease, she was a little shocked - "you have Lyme too?" - YES!! - I gave her my name and cell phone but I never heard from her, how sad.
My only concern is my brain and my abnormal SPECT scan. My GP sent me to a Neurologist and by mistake she called the scan a "CT" scan. So you can only imagine how the consultation went.....I took along a copy of my Igenex results and a letter from my Lyme doctor stating I have Lyme (including the names of co-infections) and that my Lyme disease is now at an advanced and chronic stage.
The Neurologist admitted he could not read a SPECT scan (which I had on CD for him to look at). He was more concerned with "what makes you think you have Lyme"........HAHAHAHA!....how stupid is that. I said to him "I don't think I have Lyme, I do have Lyme"....banging my fingers on the desk pointing to my Lyme doctors letter and saying "Look positive results from the USA". He then said "well how does the doctor know that you have Mycoplasma Fermentans?" I said "because my blood was tested and came back positive, and since myself and my partner had spent so much time in Texas the doctor was more than sure I would be positive".
He went on to say that I needed to see an Infectious Diseases Specialist....I said "oh please no, I saw one in 2005 and to this day he is still denying to patients who test positive to Lyme that Lyme does not exist in Australia!" He then said he would contact that hospital to get my notes from that Specialist....I said "well you can do that, but my diagnosis is Delusions of Parasitosis!" He was lost, completely bloody lost, and I was hot under the collar, especially since it had taken half the morning to get to his appointment by public transport. I wasn't rude, or abusive during the consultation, and I kept excusing his lack of knowledge! by saying "look it's not your fault, the government deny Lyme so how are you supposed to know"....blah blah...kiss arse....He said he would contact my GP and contact my Lyme doctor. He didn't do either. I was the one who ended the consultation because I'd had enough humiliation for one morning!! - I shook his hand and thanked him for his time.
So I need to find a doc who can read a SPECT scan other wise - DEMENTIA....here I come
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Post by itchin4answers on Sept 22, 2013 19:27:04 GMT -5
Hi Lynn, ahh the doctors zap energy, I have no energy for fighting with ignorant people. The car went to God, (the wreckers yard). We are still without a car and I have no idea how much longer this is going to go on. I have to keep strong and stay positive for William's sake. He is sick of walking too and gets ever so tired. We have been left penniless through no fault of our own. I tell myself that all this negativity has happened to us for a reason and these reasons will over time become very clear to ALL who once refused to see. Without sounding corny I trust in God and encourage the same for William, I tell him often "Jesus LOVES children, he is with you all the time". Yes a Mother clutching to anything to help her son feel safe. I put all the correct measures in place ie. seeking grief support for William. This boy is suffering beyond words, not pining for his loss, anger that the truth has surfaced for him and in his own words "I was brain washed mummy"... You guys know me and you can fill in the blanks. I am blessed to have such a beautiful son and his teacher and the school social worker have said to me that William is adorable, so intelligent and quote "William is such an old soul I'm sure he's been here before"....and ..."the things William says at times, I'm sure he's psychic". I am so grateful for a fantastic school that have supported us both this year, especially since this is William's first year of school and how trying it has been. That fund raiser Lynn was for that one girl, not for Lyme in general. Maybe I do my own fundraiser for "I need a flippin CAR" LOL I wanted to share this link which has a 3 minute video. Oh the CDC get a BIG mention and so do our children...it's real damning evidence and our children are not being protected by their own government. VIDEO: Doctors bucking Lyme protocols Study: Treatments longer to help patients; 3.9 million have been infected in U.S. Sep. 15, 2013 www.poughkeepsiejournal.com/apps/pbcs.dll/article?AID=%2F201309150600%2FNEWS01%2F309150044&nclick_check=1
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