posted
i found this to important not to post this it on you tube is only a 6 min out take from the film Under Our Skin and IMO it is the most important 6 mins of the whole movie
i know it is against the copy rights
but were talking about life and Death i know i lost my Mom to what they thought was ALS but it wasn't it was lyme and they told me i have MS it's not it's lyme proved by PCR DNA test and vastley improved MRI confirmed
it's to important not to share so i pray they leave it up
-------------------- LSG Scott Posts: 513 | From Boston, Cape Cod, Mass | Registered: Aug 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
!!!!! AMAZING !!!!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
LSG Scott - I lost my dad to an autoimmune condition. It wasn't until my own Lyme diagnosis (4 years after his death) that I was able to look at his medical history and realize he had all the symptoms of Lyme and co-infections.
Best of luck with your treatment. Keep spreading the word.
posted
I am a psychology student in my late 20's and hope to counsel those with Lyme. However, I fear I am headed for early dementia and permanent disability given my last 10-years of increasing cognitive impairment.
This video reminds me of the fate to which I believe I am headed. I saw a screening of this film and the filmmaker said Dr. MacDonald has had to stop his research work because his own memory problems are too severe now.
I have a great LLMD, have been treated consistently on numerous combo's of virtually every oral antibiotic and 1 yr of Bicillin shots over the past 5 years. I am MUCH better, but my cognitive issues have gotten consistently worse.
I feel like none of these drugs have been able to kill the persistent Lyme deep in the base of my brain which continue to produce a decline in my cognitive functioning.
I work with Alzheimer patients and many of them had no noticeable cognitive issues until their 50's or 60's at the earliest. With severe lapses in memory, language, and problem solving in my 20's, I am quickly losing hope that I will be able to escape the fate of irreversible neurodegeneration and dementia.
I want to dedicate my life to helping those with Lyme, but feel like I might have full dementia by the time I hit my late 30's or early 40's.
From what I have read, Rocephin seems to be effective for deep brain penetration and Tigecycline seems the best. However I have no insurance and can't afford Tigecycline.
As a student who hopes to counsel those with Lyme can anyone give me some treatment advice to avoid the fate of Dr. MacDonald and thousands of others who have become dementia patients because of this disease?
Hopefully yours, iwillsurvive
Posts: 9 | From California | Registered: Apr 2010
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posted
Thanks Scott I am going to talk to my LLMD about Claforan. I have never heard of that one. That is amazing about that guy's recovery in your group.
If that medication can help reverse dementia symptoms it must be good at brain penetration and addressing the neurodegenerative component of the disease that can cause or mimic ALS, MS, and Alzheimer's disease.
Posts: 9 | From California | Registered: Apr 2010
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Rumigirl
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Member # 15091
posted
Iwill,
There's also IV rocephin (generic--ceftriaxone), too. Definitely you would be most helped by IV treatment at this point. There are some programs to help people who don't have insurance; look on the info at the top of this section). And some people have gotten their meds online from other countries (checking the reliability of the pharmacy, of course).
Don't give up!
Others have been helped by alternative treatments, too. But it sounds like IV is the way to go for now.
Posts: 3771 | From around | Registered: Mar 2008
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BoxerMom
Frequent Contributor (1K+ posts)
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posted
LSG Scott - I watched your video. Good luck with your game!
Iwillsurvive - You are too young to know the Gloria Gaynor song (disco classic!) and too young to lose your life to Lyme. Figure out how to get IV antibiotics. The world needs you, your brain, and your admirable professional goal.
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I saw Under Our Skin in theatre and this wasn't on there. How do I get the full version with all of this on it?
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
You can order it online. Look up open eye productions.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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2roads
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posted
Thanks Scott,
It was also the same with my Mom.
My family and I were so busy suffering that I failed to see that that was why my Mother was slowly dying.
I see it now.
Sadly enough, the doctor that performed a hip replacement on her was diagnosed with Lou Gehrigs disease. She was a pretty, middleaged doctor. I remember 2 years after Mom's surgery she told me this doctor was diagnosed and was dying.
It is so sad.
I think my husband is still sick. He was so bad about taking his meds.
Yea, the other link about what comes around, goes around. I've seen it im my sister-in-law and my friend's child. They can't help themselves because they are so damb pigheaded.
They know everything, or atleast that they are not taking months of meds...imagine. My friend implied that I was okay with it. How crazy.....ITS SURVIVAL?
I am going tp buy this CD next pay period. Two actually. One will move around locally, the other out of state. Maybe someone will wake up.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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I have been treated for Bartonella and Babesia very heavily for years and was on Mepron twice.
I now realize I need to ask my doctor if I can go on IV but it seems like Rocephin has not been sufficient for many who have severe neurolyme.
I think I may need IV Tigecycline or Claforan. My memory is rapidly declining even though I am on a truck load of Ceftin & Amoxycillin pulsing, with Rifampin and Biaxin and have been on virtually every oral rx under the sun.
It feels like the orals are just not penetrating the deep subcortical areas at the base of my brain. My symptoms are all cognitive and are getting worse.
Posts: 9 | From California | Registered: Apr 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
This may sound completely stupid, but when my LLND had Lyme, her LLMDs and LL opthalmologist told her she might lose her eyesight, so she would take her antibiotics then go to the gym and hang upside down to get better abx penetration to her eyes. I don't know how she didn't throw up. But it worked.
The herbs Vinpocetine and Ginkgo Biloba increase blood perfusion to the brain. If your cranial pressure is OK, take some herbs, some antibiotics, and when you feel you're at optimum blood levels, lie on an incline with your head down. I know Dr. B cautions against this, as it could get more spirochetes to your brain, but it sounds like you need abx in your brain.
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