I’ve got LymeAIDS, another B-cell disease, just like my Dad had B-cell Lymphoma. At the moment, the only thing that is stopping me from loosing my ability to walk and think is 5mg of prednisolone a day which is NOT a cure. Antibiotics would keep me going by reducing the bug load which is also not a cure, but I am not allowed to have them anyway except for one week for a hoped-for lung-infection. I say hoped-for because the changes in my lung-nodule could be something far worse. I know the antibiotic protocol works because it gave me back another couple of years of being able to act normal and participate in life. I had 12 months worth and the bicillin injections were the mainstay of my treatment but I suffered so much during that 12 months that I have not been in a hurry to line up for more. Money has a lot to do with it too, but I am dying now. Not that anyone else knows. My doctor thinks that a sleep study is going to reveal all the answers. Now who is the naive one?
All this ME/CFS fibromyalgia Lyme stuff is all tied together with the glandular fever I got so young but there was something else that made me delirious enough to write about my hallucinations for a grade 7 Creative Writing assignment before the glandular fever and a reactivation of chicken pox after. My glands have been going up and down ever since but the doctors won’t let me be diagnosed with chronic EBV because it doesn’t exist. Lyme disease does not exist in Australia either they say. The family tick encounter was even before all that and all it left me with were leg pains that I was told were growing pains. I don’t know any of this is for sure because it wasn’t me who had a tick bite (that I was aware of) but finally after all these years I’ve decided what matters is to stop being so naive and accept the fact that money, profits, patents and threats have more influence over people than the truth. And all that filters down to your friendly General Practitioner who will not read the research even when it is handed to her.
It’s not conspiracy theory any more. It is now all documented in the charge sheets found on truthcures.org so don’t be naive and learn the truth before you die.
Some idiot this morning had the gall to tell me in a “private” message that the science saying that “Lyme” causes an AIDS-like disease in the majority of victims is, in his important opinion, “dead wrong.”
I am not here to argue over treatments or whether the well documented model of Borrelia-post-sepsis disease is correct. If you are a Lyme victim, and you claim that this model can’t possibly be correct, because *you* got better with antibiotics, or pot, or whatever…just leave. If you can’t have the human decency or capacity for critical thought to realize that your personal case is not equal to the disease model (i.e. the center of the universe), then have a lovely day and be well.
Just don’t run around telling people that because *you* are better (temporarily or otherwise) Lyme is not so serious as to kill people, disable children, and cause permanent immune…
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Here’s two of Thomas Grier’s posts from his Facebook page:
This photo (below) of Dr. Willy Burgdorfer and myself is from 1992 or possibly 1993. This was one of the first International Lyme Disease conferences I attended.
It might not show, but during this conference I could barely stand upright, and all the noise and activity was like a swarm of bees and geese making my brain swirl with anxiety and fear of collapsing.
In 1992 I didn’t know who the good guys or bad guys of Lyme disease research were; I didn’t even think in those terms. I tried to listen to every lecture with an open mind and acceptance because I was still naïve enough to believe that science and medicine was a pure and untainted by politics or special interests.
Barb Jones RN my best friend and Lyme patient advocate introduced me to her friend Willy Burgdorfer, and we had lunch together.
In subsequent conferences I would meet and speak with Willy over the next 20 years perhaps another dozen times; each time being special and memorable. I knew from the beginning that Willy Burgdorfer was a good guy.
The first question I asked Willy was about the species variation of Borrelia. I mentioned Relapsing Fevers and wondered if we would see the same kind of diversity of Borrelia species in America. He told me that almost every isolate in the Rocky Mountain Lab (NIH) collected was its own isolate.
“Yes. We will see diversification! Almost every tick species has its own specific Borrelia organism, this is seen even in America. We are just lucky that we do not have the African tick species like the Moubata ticks living in our woods.” He said in his thick Swiss accent.
He then went on to tell me about the great pioneers of Borrelia research and facts about Old World Relapsing Fevers and how they differed from Willy’s first isolate of Lyme disease from Shelter Island.
I mentioned that the great Nobel Prize laureate James Watson had been instrumental in showing that bacteria can exchange genetic information and plasmids and asked if Borrelia either exchanged DNA inside the ticks or the animal hosts.
“We do not know this but it is likely and needs to be addressed.” He said in a way that tried to end this conversation.
Pushing him I asked if European hard shelled ticks had ever been able to maintain a species like Borrelia duttoni when feeding on infected host animals. I asked because Dr. Dutton from Britain might have done such an experiment with his native tick?
Willy just smiled and said:
“No evidence of this has ever been published, and it is unlikely that this would be a focus of any research.”
Dr. David Dorward then joined us and he and Willy walked away. This was my first conversation with Willy, but over the years we would talk on the phone and I gained a true appreciation of how global his pursuit of microbiology was.
Willy did not think in just terms of American disease, but of global concerns.
It was clear from early on that Willy was not a supporter of the rigid thinking and black and white statements from YALE and the CDC telling us so early on that Lyme disease was contained to the NE USA. Or dogmatic maxims that Borrelia burgdorferi was only found in the Ixodes damminii ticks, or that there was no relation to any Relapsing Fever Borrelia species. How, in just a few months after isolating Borrelia burgdorferi, could any credible scientist make such fixed determinations?
Of course Willy was right. Lyme disease could not be contained or be explained in rigid unyielding terms. Lyme disease was ever changing ever moving and ever vexing.
Later I will post about a few conversations I had with other Lyme disease researchers over the past 25 years.
END
Thomas Grier (left) and Willy Burgdorfer
Thomas Grier Executive Director
Dr. Paul H Duray Pathology Research
902 Grand View Ave
Duluth MN 55812
(218)728-3914
TO: Editors of Arts and Patient magazineDear Editors: I am writing to express a concern about the article you recently published, written by Professor Jan Keppel Hesselink. The article was a position paper about how patients and the lay-public have exaggerated concerns or misrepresented the seriousness of Lyme disease and modern vaccines.
As someone who has been involved with Lyme disease and Lyme disease research since 1990, I have concerns about academics who express strong opinions on this subject, but offer little or no scientific support or research of their own to support that patients are trying to influence medicine in a negative direction.
Since 1991 I have fought for pathology based Lyme disease research to put certain myths and misinformation about Lyme-Borreliosis to rest. For over 25 years the lay-public has been told facts about Lyme disease that quite frankly are not true and were never true. Many of these untrue facts are still being propagated by major physician groups and medical institutions; but lets look at the facts from a position of human pathology. Then decide who is misleading whom?
We were told that only the Ixodes dammini tick could carry Lyme disease and that it was only found in the NE USA therefore Lyme disease was only in the NE USA. The truth is there never was an Ixodes dammini tick, Dr. Andrew Spielman of Harvard misidentified the Black Legged tick which is found throughout North America and several close cousins of this tick all carry the Lyme spirochete and B. burgdorferi is found all through the Northern Hemisphere.
We were told that Borrelia burgdorferi was never intracellular. In truth Lyme disease is very much an intracellular disease and I have attached our own research photos to support that Lyme disease enters the brain and then enter both glial cells and human neurons. We urge every country to do human-brain autopsies as we have done, to see the whole truth of this disease.
We were told for over two decades that Lyme disease is not transferred from mother to fetus. (2006 Dr. Gary Wormser Yale in Under Our Skin documentary.) Once again we have the pathology evidence from 1989 of eight fetal autopsies showing Borrelia in the umbilical fluid, in the placenta, and in almost every fetal organ at necrotopsy. (See attach images)
What else did they get wrong? (When I say they I generally mean in my opinion that the misinformation about Lyme was most damaging from those that had the most influence on the Medical Community which includes the CDC, Yale, SUNY, Harvard and Mayo Clinic, the ACP and the IDSA)
Another untrue truth we were told was that only one species of Borrelia causes Lyme disease. Did they learn nothing from Relapsing Fevers? Borrelia changes and evolves like no other bacteria. It is constantly changing and evolving. We now have 12 species that cause Lyme disease and several species that we call Lyme-Like.
Another non-fact is that we were told that there was only one reservoir host – the white footed mouse. Of course now we know many rodents and birds are carriers of the disease and transmit it to feeding ticks. The range of these animals is far beyond the NE USA where we were told was the only place Lyme disease could exist.
In the Yale medical Report by Marc Voortman it says that patients with a positive ELISA test but a negative western blot can ignore symptoms like a bull’s-eye rash, Bell’s Palsy, and swollen joints and no treatment is necessary, but if the Western Blot test is positive you can treat up-to 2 weeks with doxycycline. I have attached pathological proof that two weeks is not sufficient for late Lyme symptoms.
The list of misinformation shows that the medical experts from the very discovery of this disease got over a dozen major-critically important facts about Lyme Borreliosis completely wrong, and perpetrated misinformation long after pathology had proved them wrong.
The most damaging untruth about Lyme disease was the insistence that Lyme disease does not persist in the human body after antibiotic treatment.
Attached are photos from a patient that lives just a few miles from me. He was a logger who was sick for 30+ years. He was diagnosed with Lyme disease and treated with aggressive antibiotic combinations for over seven years. When he died we found both Borrelia burgdorferi and Borrelia miyamotoi in his brain, and we found live B.burgdorferi and B. mayoni in his testicle.
Lyme disease does persist. It gets into the brain and inside brain cells. (Attached pathology photos from brain autopsies) In addition we have cultured B. burgdorferi out of Alzheimer’s brains.
It is unfortunate to see a position paper like this in 2016 considering that this is the year that many major Universities are clamoring to be the first to publish that they have found an infectious etiology to Alzheimer’s disease, and Borreliosis is the front running contender as a brain pathogen. While we have been using pathology for over twenty-years to prove Borrelia and Alzheimer’s are related, others are just now waking up to the fact that having both a cause and a potential treatment for Alzheimers, is worthy of major recognition.
2016 is the year that the race for the Nobel Prize has begun in earnest, and the group that gets accepted recognition of Borrelia in human brain causes Alzheimer’s pathology will most likely win the prize. You will see papers by Harvard and other major Universities vying for the pole position to prove Alzheimer’s has an infectious etiology.
While others live in the past and criticize patients for their efforts to use pathology to prove their illness has been mismanaged, the medical community has moved on and accepted that the facts they once thought were true are now part of history, and that the Lyme patients were in fact more right than the experts.
Lyme disease persists in the brain, the serology tests are missing brain infections, pregnant mothers can transmit the disease to their unborn child, sexual transmission is likely now that we documented Borrelia in human testicles even after antibiotics, and Lyme disease is found through-out the Northern hemisphere caused by more than a dozen species of Borrelia and carried by many ticks, and Lyme disease can kill as it did in the New York man who had Borrelia in his heart.
So when a patient disagrees with their doctor and explains that they are still sick after treatment. Who is right? The doctor citing 30 year old dogma, or the patient that died and had a brain-autopsy done that revealed a persistent brain infection despite years of antibiotics?
Thomas M. Grier (Exec Director)
Dr. Paul H. Duray Pathology Research Foundation
Water is more important than fibromyalgia and Oil and water do not mix which means #NoDAPL and this is an example of people power that we could employ don’t you think? After the water and the earth we should protect our family especially the members who are chronically ill as well as dealing with the oppression that comes with societal attitudes toward invisible suffering. Standing Rock water protectors are something I would not have even known about had it not been for the Internet and Facebook in particular. And in my naivity I am once again surprised at the people who are making money from the stand-off are more often than not businesses based on stealing authentic designs and claiming them as there own. People are pretending to be Standing Rock Sioux supporters but are in fact foreigners trying to make a quick buck and setting up fake Facebook Pages. I just wanted to post one simple little story that gets to the heart of the matter and I pray for peace and common sense and an eventual relocation of the pipeline to a safe distance, if there is such a thing but hey, come on, it’s their land.
After receiving a donation a couple weeks ago from a group of children in Vermont, we asked their teacher, Kathryn McEachen, to share the story of how they had raised the funds. We were thrilled to receive the following beautiful story to share with you about how these young water protectors thousands of miles away came to support our students here at Mní Wičhóni Nakíčižiŋ Owáyawa.
I teach in a small school in west central Vermont, called The Schoolhouse Learning Center. The preschool staff had been inspired by what they’d read about the peaceful water protectors at Standing Rock, and individually, we were all wanting to find ways to help. Then we realized that what would be even better would be to involve our class of four year-olds (known as the Wild Grape class) in raising money to support the protectors as they did their work.
We started slow, first…
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I had visitors this past weekend. It was the first time in months that someone from out-of-town has visited me, and despite what some of my other posts may suggest, it was certainly the most active…
Source: You, Talkin’ To M.E.?
How would you like to be locked up in an institution for functional disorders (imaginary) for years when in fact you are indeed a very sick person? I’m so glad that she is home:
KARINA HANSEN, “PRISONER OF DENMARK”, IS HOME AT LAST. On Monday 17 October 2016, after three and a half years of incarceration, Karina (who has severe ME – see below) finally ret…
Source: Karina Hansen 6: THE HOMECOMING
Click on the link below to open a PDF so that you can understand the problem (in the name of valid and reliable research and future patient treatment) that the CDC and Holmes have caused by failing to investigate Mycotoxins in the Lake Tahoe outbreak of “Chronic Fatigue Syndrome” previously called Active Mono by Dr. Paul Cheney and others:
Google translate version posted by Bente Stenfalk on her Facebook page:
Three Wednesdays in a row, it is now possible for karinas parents to come in and visit her.
There was a friendly physiotherapist who let them in the first time.
Since Karina nodded yes to see his parents when the staff asks her if she wants to visit the parents.
Karina can nod and shake your head and on the way to express that you understand the question.
Visits May not be very long for Karina gets old fast.
Karina get run around outside in a wheelchair by the staff and she can walk very short distances with a walker.
Karinas phone has resurfaced, and physical therapist helped to exchange phone numbers with the parents, but Karina, unfortunately not.
I close this thread for questions for parents do not want any further debate on visit online right now, but they would like to share this good news on visits with you. We will follow up when there is new.
Also, regular readers at the following ladies blog link will be familiar with Karina’s horrifying story. This update follows on from her series of posts, the most recent of which, Karina Hansen 4: Timeline, Torture and …
Source: Karina Hansen 5: A little progress?
IMPORTANT FURTHER UPDATE – She’s home!
the flu-like illness could rage through the school, but the teachers IN that lounge were the only ones who didn’t recover.
Source: How To Make Sure An Invisible Disease Stays That Way
