Hello everybody. Sunday the 29th of may, representatives from the Swedish Lyme Association and the public gathered for a manifestation at the square ”Medborgarplatsen” in Stockholm. Unfortunatly we were competing with ”mother’s day” and Sweden’s biggest horserace ”Elitloppet”, so the assembled crowd wasn’t as large as we hoped, so we’ll see what that means for the futurein coming years?
It’s rather difficult, to stand up to the politicians and show them we exist and that they have to take us seriously, if there aren’t many many people standing there together with us, and then we struggle in vain.
But like previous years I held my speech as usual:
Angelicas speech 2016 Im Memoriam Bailee Winnehan 1996-2016
Welcome, everybody, friends and strangers alíke.
My name is Angelica and I am the President of The swedish Lyme association. I stand here today before you, in sickness, and as a mother and as a representative of thousands of sick people in our country, most of them to sick to even be here.
We are gathered here today to show that we exist. We who are here, are still alive, in contrary to many of our bretheren and sisters all over the world, and even though authorities try to make pretence that what we are talking about doesn’t exist, one cannot tell a lie and close ones eyes to us standing here today.
I get news of deaths and send condolments every week, sometimes every day. In fact, after writing this speech I got the news of Bailee Winnehans death, only 20 years old, may she rest in peace. In Sweden they refuse to acknowledge our reality and keep themselves to dogma and recommendations, created by biased and corrupt organisations, and that’s not even eligable in the country they were created in. The IDSA guidelines were removed from the american health authorities homepage in the beginning of the year and that leads to the effect that the swedish recommendations regarding Lyme disease, are based on something that doesn’t exist anymore.
When will Sweden follow suit?
In the same way that people in the eighties ousted those afflicted with HTLV3, later renamed HIV, that was killing through AIDS, society is trying to silence us to. They keep the consequences of persisting infection hidden and they keep the various ways of transmission of the infections under wraps, although studies abroad show clearly, that in the same way you have to screen blood för HIV, you need to screen blood för lyme disease and a number of coinfections like Bartonella and Babesia, wich both have serious and sometimes lethal consequences.
If you turn to the International or American Red Cross, you are not allowed to donate blood, if you have/have had a borrelia burgdorferii infection, but in Sweden that’s no problem, go right ahead. To those who claim that lyme disease is a simple infection, like the common cold, that is hard to contract and easy to treat I say: ”Come – I’m willing to give you my blood. It’s packed with bacteria and viruses and a little of this, and a little of that, but hey, they don’t excist according to you, so that’s no problem, right?
Wrong. We live in the shadow of death but I’m not that morbid, even if lymie humour is what it takes to live with these diseases and I KNOW, so I’m prudent enough to NOT donate neither blood nor organs, because I wouldn’t wish this sickness on anybody else, not even Mats Reimer, who is the one shouting out the loudest, that we are completly insane and should be locked up in mental facilities and be treated with cognitive behavoir therapy. Yes, you guessed it right, I am totally fed up with that guy. ALL maglomaniac doctors should be forced to walk a mile in someone elses shoes before judging them and telling them what their reality looks like.
Mats Reimer is a pediatric and also a blogger for ”Todays Medicine” and he was nominated and voted ”Deciever of the year” 2012, by the people. The motivation was that he is an advocate for amphetamine drugs for youth and children with ADHD. Mats Reimer has also gained the pharmacutical company ”Shire’s” assignment as their drug Vyvanse’s foremost advanced protagonist and advisary in the childs medicine market in Europe.
As we know in our circumstances in the lyme community, neuroborreliosis often presents itself as ADHD-symptoms in children, so I am suggesting that he has his own agenda, when he dismisses chronic lyme disease. I have seen in my own son, that if you get treatment for lyme disease, then the ADHD symptom disappeares and studies show that this is actually more common than previosly understood. He makes money of children getting the diagnose of ADHD instead of neuroborreliosis.
Since Mats Reimer is allowed to take such a high stance in public debate, he bullies and he has rendered it difficult for more moderate antagonists to partake in a meaningful and pertinent debate. This locks us all in polemics, instead of bridging gaps and divergences.
The real tradgedy in this situation, is the fact that they refuse to admit that you risk transmitting the disease to your unborn children in the womb. Your children can be born sick and THEY haven’t done anything to deserve their fate, and thats the greatest shame of all. At the maternity clinics you should get information that would prevent that from happening, but it is not given today.
Consenting adults that practice unsafe sex and contracts the disease, have at least been given the choice of protecting themselves and may face the consequences of their actions one might think?
Its the same thing here as with everything else that spells lyme disease. The evidence are piling up around the world, and they show that Lyme is an STD and that is beeing held under wraps i Sweden. At the end of 2013, when Stricker and Middelveens seperate studies showed this to be a fact, it was reported in the news and papers all over the anglican world, but in Sweden only the paper ”Expressen” wrote about it in the seperate health section in the back of the paper.
It SHOULD have been first page news with capitals and alarming preambles.
On the whole, we are beeing unfairly treated or patronized by the media and they perpetuate the misconsievings that are out there in both big and small. Earlier this year, me and other fellow human beeings with these serious diseases, had to endure a very demeaning TV broadcast from TV4 ”Nyhetsmorgon” (newsmorning). In the morning sofa, Dr Mikael ”Dr sun” Sandström sits in his usual yearly reaccouring sponsered vaccin commercial and dismisses in round figures, 40 to 400 thousands of people a year (just in Sweden) as victims of imaginary ”its all in your head” sickness, when he audaciously , in political concensus, claims that chronic lyme disease doesn’t exist.
”Wham and there we’ve got a hundred emails!” he comments his stance, which clearly demonstrates that he is talking against better knowledge, and when you compare his earlier statements, in this matter you see that his tone has hardened.
Of course, I and many others, wrote letters in protest and gave several good scientific reasons as to why they were in the wrong and should correct their approach, but as always I wait in vain for an answer.
For example, the former President of ILADS, Dr Robert Bransfield, has compiled a a list of over 700 studies that prove us correct regarding the matter at hand. Who talks about that?
What if TV4 could do a piece that sheds light on theese facts that are presented in blogs all over the world and that describes reality and the future, in the way it will form and happen one day.
Sometimes we have unexpected windfalls.
Nobody in Sweden could have missed the latest wave of headlines and articles, some weeks ago? I assure you we in the SLA have not. Amongst our own we rejoiced from gratitude; ”Finally – someone can hear us”
Hopefulness that all these articles can become a framework for building new bridges to a better future. For US, for the healtcare system and for the dignity of our country.
We are the most vulnerable, and a country is to be judged by its way of caring for the weak and vulnerable. And in that regard a lot is left to be disired. But now, maybe there can be change. Now we can start to look ahead. Now we can launch a new age of thoughts and we can turn to our leaders and say ”Show us something new” ”Point us towards a safer road to travel, that will allow us to go together, a bridge that will lead to higher ground of concord and respect ”Let us build a round table and let us talk of our mutual future”.
And the one who dared tread first shall be honored for his courage to lead:
THANK YOU THOMAS JAENSON
And thanks to all the papers and magazines tha reported the good news we rejoiced at:
Aftonbladet, METRO, Dagens Nyheter, Läkartidningen and last but not least, the one paper with very little credibility amongst our people; Dagens Medicin, and we hope that this forces them to ask a certain peadiatrician to dampen himself in the future.
The Catholic Church had to give in and stop burning heretics. The Sun is today the center of our Universe, but it hasn’t always been that way, right? Dr Semmelweiss was correct. Puerperal fever is caused by dirty hands and as much as they laughed at him in the 17 hundreds, HE WON. We will win to. GIVEN TIME.
I also would like TV4 to consider, what responsability you have, if people, as a result of your misguiding information about these diseases, remain seriously ill, or even becomes worse inflicted and what would become of YOU, if we were to adopt the american way of class actions and lawsuits?
Could TV4 afford the consequenses based on what I have presented and even more important: Could Sweden afford an increasingly bigger and increasinly sicker population, just because nobody’s prepared to listen to the patients?
Statistics show that over 40 000 people contracts lyme borreliosis in Sweden each year. Thats more than those who gets breast cancer. Where is our ”green band gala”?. At least 10 percent (probably ten times higher in unregistered cases) of these are afflicted by the more life altering concequenses that’s so devastating to the patients and the suffering is beyond comprehension for most people. As we say internally: ”You don’t get it ‘til you get it”
The rate of suicide among these patients are alarmingly high, and every day I read obituaries, eulogies and recieve news of people dying, either from the disease itself or from receeding to fate and ending it on their own, somewhere in the world. EVERY DAY.
For instance the news of Scott Chant. A young man, that was gravelly ill from lyme disease, that was fed up with the fact that they refused to recognize the disease in Australia, and he wrote an appeal to parliament , but he didn’t have the strenght to live long enough to see when Karen Smith under great pomp and circumstance gave the appeal to Senator John Madigan, who has become the champion of the lyme disease beridden in Australia. Hopefully, Scotts appeal and Sen. Madigans work leads to improvement in conditions.
Must we attain martyr dome to get somewhere?
Everywhere in the World, there comes initiatives, laws and political collaborations that will lead to progress in all those countries, but here in Sweden we’re at a standstill. Here they give us a tickcenter that probes and makes guineapigs of the patients but offer ZERO care and treatment. When will we have politicians, healthcare units and media that’ll listen?
How many of us have to die or kill ourselves before they take us seriously?
My message today is plain and clear.
WE MUST HAVE THE RIGHT TO PROPER CARE IN OUR OWN COUNTRY!!
Everything else is a mockery of our human right and civil liberties and we will not accept beeing a group of people that stays silenced and wither away anymore.
It’s not okay that people choose to end their lives, because the can’t endure the pain. It’s not okay that patients are violated by insulting doctors without any, none what so ever knowledge of borreliosis. It’s not okay to be inflicted by the nightmarish depressions that can follow a lyme/bartonella infection, that will lead to a breakdown in ones ability to cope with sociaty, IF you can cope with life at all?
It’s not okay that tests are to specified and therefore unable to catch all the varietys and strains of disease that exists, because we’re to ”modern” that we don’t even care to look into microscopes, in some desillusion that everything that’s technology is good, instead of listening to common reason and logic. ”What you can see does exists” so sayeth House and so sayeth I.
It’s not okay that the Authorities are so afraid of antibiotic resitance that we, who need it the most, are forced to go without and be sentenced to suffering, only because they can’t manage to put pressure on the pharamceutical companies to develop new and better antibiotics. Especially when it is SHORT term treatment that causes resistance, and not to much of it, a given thought somersault, that no responsible seem to be able to straighten out. That, we was taught in the eighties before STRAMA, the governments agency for restraining antibiotic treatment resistance, decided to point fingers at us patients, as the guilty party, in stead of telling it like it is, and talk about the completly horrendous mismanagment of animal antibiotics, wich is the real culprit.
And as long as the Global Food industry makes its money from/out of this, they will render our medicines worthless and without effect, and whatever drugs they will restrict from us will not make any difference as long as they give antibiotics to animals in preventive use.
There is another path to go. There are alternatives. When I stood here for the first time in 2014, I was accompinied by the doctor who has saved my, and many other peoples lives. Now the authorities, through IVO and HSAN, are trying to take his licence away. Since that day, in may 2014, we have been fighting to keep our only doctor. A physicians first job is to cure or alleviate a patients symptoms or sickness. That’s exactly what our doctor has done, where other doctor’s gone wrong, failing for many years, with diagnosing and giving proper care and treatment, and let their patients down due to arrogance or ignorance.
Dr X is a physician that with great knowledge and empathy, puts large amounts of time on helping his patients. He is a member of ILADS and har been taught by the foremost specialists in the world, who have large experience with the complex b. burgdorferii bacteria and its co-infections. He has taken part in conferences and educations the world over to gather a unique knowledge. Furthermore he attains results that way surpasses conventional care. In Sweden the knowledge about theese diseases are low among doctors and healthcare workers due to the fact that there isn’t any requirements for continued advanced education, unlike most other countrys in the world.
It is of utmost importance that Swedish doctors are allowed to treat and cure their patients without worrying themselves about reprisals or envoked licences. Legislation is now coming forwards from the USA, with the purpose of protecting such physicians under similiar circumstances. Our support for Dr X becomes guiding and our expectation is that it will encourage other doctors to learn more about vector bourne diseases, so they can be able to treat according to the ILADS modell. To punish Dr X for choosing to educate himself in this field and using that education for the welfare of his patients is unacceptable.
Don’t take away his right to cure, aliviate and help. Instead, USE his abilities and wide knowledge and experience. Give him a clinic , that under orderly forms, can prove what we are all witnesses to, being the path, the truth and the life for thousands of patients. Give us care, not diagnosis. Give us continued hope. Give us dignity.
Acknowledge the nets of information that is widening across the globe and the growing patient group thats becoming international and more organized by the day. Yesterday news arrived from Belgium that they are developing similiar laws as in the US. For us patients, the connections to the International doctors and other organisations the world over, has become the very foundation on what our work depends upon and consists of the experience and knowledge we all try to elevate and spread awareness around to our near and dear.
It springs from the technical deleopment and revolution that the INTERNET stands for. Think what would have happened if the HTLV3 patients have had the same opportunity as we have today?
Knowledge is power and thanks to the INTERNET we are no longer powerless.
Now we only have to make sure that our politicians and authorities wakes up and smells the coffee. Sweden claims itself to be foremost of nations in the scientific fields and awards medals, prizes and honors. Then SHOW that you are in the life of times and updated.
Listen to the widening field of experts that speaks the truth at the ILADS-conferences. Now in june, ILADS is holding its european conference in Helsinki. I want you politicians to either go there and listen, or that you attend our small conference nicknamed ”Mini-ILADS” that the association is organising the 13-14 of june. There will be several of these well reknown specialists, whose recommendations are the only ones allowed att NGC homepage, to give lectures about these complicated topics.
IDSA’s followers are thinning and ILADS educated team is growing every day. For now the majority of Swedish scientists and doctors are indoctrinated in the teachings of the IDSA, but they will be forced to climb onboard the boat since it is the USA that is the captain of the ship. The only question is how long it will take, befor we all meet in the middle, you know the place were politicians thrive best?
Now when Borrelia Myiamotoi has reched all the way here, in its conquest of the world, playtime is over. This strain is VERY serious, with a very HIGH mortality rate. It is the first strain with so called vertical transmission. This means that mother tick lays eggs that are hatched WITH the disease already present. All former borrelia strains required a bloodmeal from an infected vector to be able to transmit the disease. Mother tick lays 2000 eggs. Do the math on what this means.
As I said. Playtime is over. THANK YOU FOR LISTENING.
With special Thanks to my two friends who helped me with the translation:
Jenna Luche Thayer and Per Olsson
Plusgirokonto 165 18 27-6 eller Bankgiro 5921-6770.
In everyway else the fight continues as before.
Stand up for yourself or be stood down by the doc’s!
(klicka på bilden)
I also would like to remind you of the petition to save our only LLMD DR X;
Angelica Johansson, administrator for the free and from the Association independently and unbound ”Cure for lyme disease-blog”, main administrator for the independent ”Cure Lyme disease now”-group at Facebook, President of the Swedish Lyme Association and administrator for the Associations facebookgroup.
(This blog is written by me as a private citizen and not in my capacity as President, and the views I represent here are my own, and does not represent the Association in general, and any offence taken should be raised towards the undersigned)