posted
At this time it is only fair that we send our good wishes to our enemies too. So I would like to wish the following to the Denialists of the Steere camp:
" Strong and long-lasting tiredness and exhaustion without any prior physical strain (for example sleeping several times a day or feeling exhausted half way through the day even after a good night`s rest).
Severe joint pain which randomly changes in location and intensity, sometimes seemingly disappearing altogether (without treatment) only to reappear at a later date. Sometimes relatively large joint swelling ...especially in the knees and hips (it could even be painless when occurring in the knees).
Intense headaches , mostly throbbing diffused or localized at the frontal, temporal or all around the head, painful combing or brushing of the hair, pain in the throat or tongue as well as the shoulder and neck (often only on one side).
Chronic sinus infections with multiple relapses and slow recovery as well as long-lasting swelling of the mucus membrane.
Lymph node swelling -painless or painful- under the lower jaw and along the cervical spine (neck), under the armpit and in the groin of the leg which was bitten by the tick.
Muscle pain and cramps throughout the whole body without prior physical exertion, usually with an increase of the muscle enzymes (Creatine kinase (CK) and/or Lactate dehydrogenase (LDH)). 6
Spontaneous muscle twitching (fasciculation), often in the arms or legs.... twitches which are usually visible and perceptible.
Pain in the ligaments and tendons, especially the Achilles tendon, but also as in Epicondylitis (also known as tennis or golfers elbow), Carpal Tunnel Syndrome (CTS), �Jumping� fingers (also known as Digitus saltans, caused by a swelling of the tendon inside the tendon sheath) or irritation/inflammation of the Plantar-fascia which causes pain in the sole of foot with the first steps in the morning.
Partial or full tendon and muscle tears without adequate physical exertion, especially applicable to the Achilles tendon, the thigh muscles (M. quadriceps femoris) or the calf muscles (M. triceps surae) and sometimes even the upper arm muscles (M. biceps).
Bone pain in the shin and the heel, especially when lying down or during the night.
Deep seated aching pain in the conjunction of ribs and breast bone or at the lower ribcage, often combined with a feeling of reduced respiratory volume and pressure on the ribcage (can be confused with the feeling of �chest pressure� experienced by patients affected by depression!).
...a strong irritation in the throat with coughing occurs and shortness of breath after only minor physical activity (like walking upstairs).These symptoms are most commonly encountered when also suffering from a co-infection with Chlamydophila pneumoniae or Mycoplasma pneumoniae.
A burning pain of the skin and/or a feeling of numbness, which can occur all over the body or in certain areas only, or an itching and crawling sensation without any visible changes of the skin.
�Electrifying� or �water flowing� sensations under the skin, often under the scalp as well.
Sudden stabbing pains in different groups of muscles, constantly changing location.
Sudden racing heart beat, especially at night, without any previous physical activity, irregular heart beat (extrasystoles) or uncomfortably strong heart beat (palpitations).
...dysfunction of the regular transmission of heart impulses which can be the reason for third-degree AV block (also known as complete heart block) and arrhythmias. ... a fluid build- up around the heart (pericardial effusion) signifying myocarditis in conjunction with pericarditis.
A change from normal to high blood pressure (hypertension) mostly with a rise in diastolic values (over 90 mm Hg).
Neurological symptoms and complaints - numerous and complex. Beside strong pain alongside a peripheral nerve (polyneuropathy) and misconceptions of physical sensations 7 (dysaesthesia), tremors ...in the extremities as well as (partial) paralysis of arms or legs.
...paraplegia or hemiplegia and/or reduced feeling in one half of the body (hemihyposthesia). These neurological deficits can all be caused by a borrelia-induced inflammation in the upper spinal cord (resembling a stroke). ...epileptic seizures ...
Garin-Bujadoux-Bannwarth-Syndrome (or in short �Bannwarth-Syndrome�): This is a typical manifestation of a recent Borr. burgd. infection (although it can also occur in the later stages of the disease).
It presents itself as an intense burning and aching, usually in one leg or arm only, resembling the pain of a slipped (herniated) disc or � if the upper extre-mities are affected- a so called shoulder-arm-syndrome. By the type of pain one can differentiate between the two conditions, as the pain caused by the Bannwarth-Syndrome is the worst at night, whereas the pain caused by a spinal herniated disc increases with movement through the day.
Commonly-prescribed pain relievers or anti-inflammatory drugs will have little impact on the pain if caused by Bannwarth-Syndrome and physical therapy is similarly ineffective.
... the symptoms of Bannwarth-Syndrome can occur repea-tedly.
Dysfunctions of the autonomic nervous system: Impaired sense of body temperature with either severe shivering �from deep within� or �hot flashes� as in menopause, but experienced by both women and men. Profuse sweating (mostly at night, but also during the day). ...slight fevers (sometimes bound to a circadian or monthly rhythm), �flushed cheeks� without fever, predominantly in the afternoons, newly-developed alcohol intolerance often for only very small amounts of alcohol and the aforementioned exhaustion and severe fatigue.
... possible cranial nerve dysfunctions:
Irritation of some cranial nerves ...Paralysis of the facial nerve occurs most often during the early stages of the spirochetal infection, while in the later stages of the infection several of the 12 cranial nerves can be affected at the same time.
Dysfunction of the eyes: Pain of the eye muscles during eye movements, slight double vision, light sensitivity, upper eyelid weakness, delayed adjustments to light changes i.e. at dusk (accommodation dysfunctions), pupil dysfunctions (e. g. paradoxical ondulating mydriasis when exposed to direct light), burning eye infections (conjunctivitis) and dry eye as well as grittiness of the eye, even scleritis, retinitis and scotoma.
Dysfunction of hearing and the labyrinth: sudden loss of hearing, tinnitus, dizziness (vertigo) and impaired balance. Dysfunction of the sense of smell and taste: The ability to smell and taste is impaired as well as the feelings of the face which can be changed by the irritation of the trigeminal nerve (the fifth cranial nerve).
This can lead to 8 too much or too little sensation of the skin (Dysaesthesia and Hyperpathia/Hypaesthesia). These irritations can even imitate toothache or aches of the jaws.
Hormone and metabolic dysfunctions
Sexual dysfunctions: Loss of libido, menstrual irregularities, erectile dysfunction as well as pain in the breasts and mammary glands.
Urological dysfunctions: Burning sensation in the bladder and urethra, pain in the testicles and scrotum without any indications of bacteria in the urine (�Prostatitis� without the presence of bacteria), frequent urination (Pollakisurie) daytime and at night also (nycturia), urinary incontinence, pain in the groin, all of these without urological causes (especially after a tick bite in the genital area).
Gastrointestinal complaints:
Stomach ache, flatulence, bloated feeling, stool irregularities with diarrhea alternating with constipation, loss of appetite, newly appearing lactose intolerance/food intolerance and weight gain without changes in diet or eating habits. Elevation of liver enzyme values ... without any other medical reasons.
Changes in metabolism: Hyperacidity (measurable using the Sander Test with 5 urine samples in one day), newly-appearing increase in cholesterol, thyroid disorders (often hypothyroidism with an increase in the Thyroid-stimulating hormones (TSH basal)) and development of autoantibodies against thyroid tissue (Anti-TPO), causing the so-called Hashimoto-Thyroiditis.
The spirochetes could also be responsible for a change in the activity of the enzyme which converts T4 to T3 results in the production of an inactive, inverse form of T3. Even when administering thyroid medication and TSH-values have normalized, the aforementioned change in enzyme activity can still cause symptoms of hypothyroidism (according to Dr. Klinghardt, lecture in Kiel 09/2008).
Dysfunction of Serotonin metabolism: Frequent irritability, panic attacks for the first time after a tick bite, anxiety, underlying (latent) aggression, fits of rage, intensely depressive mood swings and emotional instability caused by low levels of serotonin.
Chronic sleep disorders: Disturbance of sleep patterns with interrupted sleep, trouble falling and staying asleep, light and non refreshing sleep and nightmares. Each of these can be caused by the lack of melatonin (due to a dysfunction of the Tryptophan-Serotonin-metabolism).
Attention deficit disorders: Especially noticeable in children is a lack of the ability to focus and concentrate, as well as a predominantly physical restlessness, so many of them might be wrongly diagnosed as ADD or ADHD. They may also show changes in social behaviour, newly-developed anxiety about going to school, irritability and aggression with their siblings and friends. 9 Serious psychological changes: ... psychosis, manic-depressive mood swings, obsessive compulsive disorder (OCD), irritability and uncontrollable aggression.
Cognitive dysfunctions: Almost every patient with chronic LD will suffer from some form of cognitive dysfunction, though with varying degrees of manifestation. ...short-term memory loss, lack of concentration and easy distraction.
Difficulties in planning and organizing every day activities and thinking in the abstract are frequently re-ported.
...frequent difficulties in academic and job- related learning and, in general, absorbing new information.
..reading, calculating and writing difficulties (mixing up letters especially when using the computer keyboard) as well as in speaking (e.g. mispronouncing words, having trouble finding the correct words) and in think-ing (�mental fog�).There is a constant feeling of not being quite right within oneself. Pseudo-Dementia: In rare but severe cases of chronic LD, symptoms similar to those of an organic brain syndrome can be observed. This includes disorientation, severe short- term memory problems and even hallucinations and delusions. Skin changes Skin conditions: A rare but typical (pathognomonic) skin change, which only occurs in 2% of all chronic LD patients, is the so-called cigarette paper skin, which normally occurs in only one extremity. This is stage III of ACA (Acrodermatitis chronica atrophicans). Stages I and II of ACA are much more common and show subcutaneous swelling and lilac color.
Often you will see bluish and white blotchy skin in combination with cold extremities. Recently, Focus Floating Microscopy (FFM see below) has been developed to research rare skin conditions such as Morphaea (Sclerodermia circumscripta), fibrotic-like nodules in close proximity to joints as well as Granuloma anulare. These skin conditions could, by this histological method, be proven to be a result of an earlier infection with Borr.burgd. Additionally, in 30% of all of these patients Borrelia antibodies were found
Erythema migrans (or Erythema chronicum migrans, if it is present for more than 4 weeks) has already been mentioned earlier as a typical LD skin symptom (commonly known as a bull`s-eye rash). Not as well known might be that EM can appear in multiple forms and at var-ious locations at the same time. It can also reappear as long as the spirochetal infection is on-going, particularly during antibiotic therapy. This means, on the other hand, that not every EM is a sign of a recent Borrelia infection, but can also indicate a reactivation of an already existing LD infection. Lymphocytoma is another typical skin reaction to the Borr. burgd. infection as already described above. Skin Rashes of various types like papules, urticaria, blotches, flakes etc. are seen. Atrophy of the follicles of the skin and hair (Anetoderma), hair loss (Alopecia areata ) as well as inflammation of the subcutaneous tissue (Panniculitis) which causes painful skin nodules. Problems of nails or hair: Nail growth anomalies like brittleness or nail grooves develop as well as profuse hair loss (mostly in women). 10 Another symptom, not specific to but often found in Borreliosis patients, is a much stronger reaction to anaesthetics and vaccinations than previous to the Borrelia infection. In parti-cular, a vaccination for Tick borne encephalitis (TBE) can exacerbate LD symptoms. However, it is not uncommon that other infections, especially those caused by viruses, do result in relapses."
nb The abopve list is adapted from a document by German Lyme doctor Dr Petra Hopf-Seidel. It was prefaced by the paragrpah below:
"Which clinical symptoms could be caused by chronic Lyme Disease? Chronic persistent Borreliosis should be considered as a possible cause whenever several (generally more than 3) of the following symptoms occur. This is especially true in cases when the patient is not aware of ever having been bitten by a tick or having had an EM or when certain symptoms come and go (relapses) even without any treatment."
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
"Bipartisanship" in the Lyme world, like the legislature, is the answer to progress. We need to "cross the aisle," recognize whatever might be valid or useful in the other "camp," and work together to get more research funded. Animosity will create more polarization and marginalization of patients.
I say this after having suffered, or watching my kids suffer, as much as anyone at the hands of the medical establishment.
Posts: 108 | From US | Registered: Apr 2012
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posted
I think pug is right...we will never get anywhere long term unless we make a fragile kind of peace and try to find common ground with some of these denialists.
I have ENORMOUS rage too , esp at the drs that allowed me and in particular a friend of mine that I love more than almost anyone become chronic.
All that aside, pug is a thousand percent correct when they state that constant animosity and an unwillingness on both sides to try to work together to find common ground and fund research will only lead to stagnation and even further marginalization of lyme patients.
So my new years wish for the denialists is that they lose a touch of their arrogance just long enough for them to try to see things from another POV.
Hatred and anger are good motivators, but it will not in the end lead to the kind of change and progress on this disease that we want. I hope that makes any sense at all. I am living off of 4 hours sleep . Jess.
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
My view is the other/dark side people simply will never come over to acknowledge any truth. They are "all in" to use a poker phrase, and to do so would be admitting huge guilt for what they have done to their patients, opening up themselves for easy future lawsuits. Simply won't happen, regardless of what they ever believe in the future.
As happens with many scientific revolutions, the new theory prevails simply after all the old people stuck on the old theory die. All of these people will die, the cycle of life guarantees that. As time goes by, with even more information, it will be harder and harder to convince newborns of their ridiculous point of view, and that is simply how it works.
Time.
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I agree with Michael.
I'm glad the denialists are old.
Plus, the stress of having the truth weigh on their small consciences every night will ensure they won't live until their 100's.
posted
I agree with Michael. Those on the dark side have no intention of learning from us, or from the thousands of clinical papers and the thousands of in vitro studies. Things are under control just exactly the way they planned them and they will cling to their position come hell or high water.
After about 1989 or 1990, Lyme disease has been deliberately denied and we the patients have been subjected to a myriad of lies and well-organised put-downs.
The Lyme community has already donated millions of dollars to fund research and the infamous Klempner clinical trial cost the patients and their families dear, as it became a slap in the face to all of us, with the dark side manipulating the statistics to paint their own version of the outcome. At the same time, the Embers monkey trial was kept unpublished for nearly 12 years, while every ID or neurologist doctor was allowed to believe that Klempner's false information was the ultimate proof that there was no benefit from treatment.
Also co-ordinating with them, are the well-paid and established psychiatrists, of the Wessely school here in the UK, who in close links with the insurance industry churned out hundreds of papers saying, but no way proving, that the neuro-immune disease Myalgic Encephalo-myelitis aka CFS (of which there is an epidemic in the UK) is only a malfunction of the psyche and a sign of malingering, hysteria or even the result of a poor upbringing. Most people who end up with this stigma of a diagnosis are highly likely to have a vector-borne disease, Lyme, Bart, Babs, Rickettsias etc, so it seems from the evidence from more and more patients who are managing to find good conscientious doctors.
In the UK, Simon Wessely has been awarded the highest honour from the establishment, a Knighthood. He will be able to call himself Sir Simon Wessely, but never will I address him as a Sir, if I ever write to him or speak of him.
He has been rewarded by the establishment for his dastardly and persistent attacks on the sick for the last 25 years. Even the American DOD used him on papers to deny Gulf war Syndrome. He also presided over the analyses of the victims who were poisoned by water from a UK reservoir, at Camelford down in Cornwall of Dorset somewhere. Those people were ill, but were labelled as hysterics by Wessely. Last year, 2 of the chronically ill victims died. Their autopsies showed massive amounts of brain tissue scarred by Aluminium. It was Aluminium that had been poured into the reservoir by mistake. The Camelford residents, hundreds of them, will never have any comeback unless they get their act together and fight the water company again.
We must not give up our goal of revealing the truth, please don't give up folks! Each day there is something to be learned and we must all do our part to pass on our knowledge to the younger Lyme patients who still don't know about the long years of deceit. For example, the heinous adventures of a previous Lyme Officer who I shall not name, as he has access to the most expensive lawyers in the North east. So sad that one of the highest positions of authority in the public health domain has been besmirched very badly, but such actions show the perpetrators for what they are - desperate and dastardly. They will lose in the end, the truth always comes out.
One doctor in the UK has written a great denouement of the Wessely knighthood farce here:
posted
Thanks Elena, for that new list of symptoms - they are the closest I've seen to describing most accurately what I've been through for over 20 years now. A
Posts: 180 | From UK | Registered: Nov 2005
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posted
We can always hope that they in time will accept they are wrong. I wonder how things will change when the old guard retires or pass away.
Recently one of the main physicians that advocated using opiates for chronic pain, 10 years later admitted he was wrong and changed his opinion and was vocal about his mistake.
I saw a colleague of Dr. Steere in 2011 during my searching for answers phase. He was quite firm that I did not have Lyme. Of course his diagnosis was something along the chronic fatigue spectrum despite having done a recent week of training on my bike for 28 hours.
Posts: 120 | From MA | Registered: May 2010
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posted
my wish is, that they get what we got, and feel how we feel, happy new year
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Eight Legs Bad , MichaelTampa, Andromeda13 are correct.
Thank you, Eight Legs Bad for posting.
Please do not forget that IDSA dogma and guidelines are being passed on to younger generations of Infectious Disease and Internal Medicine physicians and that we will continue to encounter these young doctors for many years to come.
And please also remember that many of us in our day-to-day lives have experienced first-hand encounters between LLMDs and our "other" physicians.
From my experience, those personal encounters between LLMDs and other docs have mostly been counter-productive.
How on earth could anyone expect a meeting of the minds on a more global scale?
As long as any person affiliated with the IDSA continues to profit financially from patents and testifying on behalf of insurance companies against people who have Lyme Disease, there will be no change.
As a mother of sick children who have suffered from this disease (and it just KILLS me to know that my children really didn't have to suffer so much, if at all) I am not at all willing to negotiate or forgive.
As far as I am concerned, the IDSA might as well be the Taliban. The US has a long-standing policy of not negotiating with terrorists. I support that policy 100 percent.
I will NOT negotiate with people who opt to keep my children sick as opposed to choosing physicians who seek science and logic that could get them well.
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree with Michael and andromeda. Those of us with lyme went over the cliff a long long time ago. These people are not protecting what they perceive to be the truth. They are protecting their phony reputations and their pockets. That is what our society has come to.
Polite reasonable negotiation is perceived as weakness. If you want change, you need to fight for it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
What goes around comes around. It won't be long before they or someone they love gets it too, but that doesn't mean they will recognize it. Lyme symptoms are so subtle, and it grows so slowly that most docs and patients miss it.
I met a doc who swore she was an expert in lyme because she had neuro lyme and thought she cured it with 8 weeks of IV. She still thought that all of her current health issues weren't lyme related at all. I couldn't help but feel sorry for her due to her own closed mindedness because she really believed everything she had been fed about western medicine. But after she treated me badly over my belief and treatment of lyme, I just thought, fine, may she suffer in silence.
People like her will never get it, even when they have lyme themselves. They think all their little symptoms are explainable. They are stuck in their own belief system.
She was a good learning experience for me in that she reminded me of people stuck in their political belief systems. If someone can't ever see another party's point of view, then they're stuck too, so no change will come until someone opens their mind to the possibility that hey, maybe there's something to this.
I'm happy I have more than a clue about what's going on, and what to do about it. We are all on another plane when it comes to lyme, pioneers on this journey, and everyone else is stuck in the land of allopathic western medicine. Best of luck to them.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Beaches wrote: "As a mother of sick children who have suffered from this disease (and it just KILLS me to know that my children really didn't have to suffer so much, if at all) I am not at all willing to negotiate or forgive."
I agree 100% with that sentiment, and with the others here who also oppose the idea of trying to work with the Steere camp.
Trying to work with the Denialists is what the Lyme movement has been doing since the 1970's. One person has already mentioned the Klempner trial. The whole history of the patients' movement has been a long string of attempts to co-operate with people like Klempner, raising money for them, all in the vain hope that they would do something for us.
Every single time it has exploded in our faces.
When EIS* officer Dr David Snydman first arranged for EIS officer Dr Allen Steere to investigate a strange outbreak in the town of Lyme, Ct, Polly Murray co-operated completely with the public health services, delighted her family's illness was finally recognised.
How could she foresee that Steere would dedicate his career to STOPPING the disease being recognised and STOPPING people with chronic Lyme from being treated?
More than a decade of denial later, Karen Forschner and the LDF trusted the NIH and other federal agencies who assured them the new Lymerix vaccine would prevent the disease. They urged people to get vaccinated. At the last minute, after hearing evidence that the vaccine would be poorly effective and likely to harm many people, they retracted their support for the vaccine. Too late. It was launched and harmed many people until it was withdrawn a few years later amid class action lawsuits.
The LDF set up a scientific journal and tried to work with both our doctors and those of the other side. They even raised money to fund work by EIS officer and biowarfare expert Alan Barbour and Durland Fish. They did not understand with whom they were dealing. Anyone familiar with Lyme history knows just how much harm these two have done to us.
Patients trusted the NIH Lyme officer Phil Baker, who was also the NIH Anthrax officer, in the late 1990's. The LDA tried their best to co-operate with him when he suggested the NIH would organise a definitive study to find out if antibiotics would really help chronic Lyme. What the biowarfare expert Mark Klempner then did to us, as Andromeda Strain mentioned, is well known, and has been used to justify non-treatment of Lyme patients around the world ever since.
We make the same mistakes over and over and over.
Even the current situation with the Bockenstedt study (see http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/121833 ) is our own fault. It was not just NIH and CDC which funded this IDSA guidelines author to produce a flawed study claiming what looks like a biofilm was just dead debris, whilst refusing any independent verification. We, the Lyme movement, part-financed that study too.
You see we need to understand the totality of what is behind the Denial. Certainly the insurance and other commercial interests play a major part. But they are not the underlying reason for the denial.
Lyme disease is a militarily-sensitive, biowarfare-related issue, and that is why the US and other NATO government public health establishments are obscuring the science and destroying our lives. Elena
posted
Sorry, I meant to include an explanation of "EIS". the EIS is the Epidemic Intelligence Service, a quasi-military unit of elite infectious disease experts. It was set up in the 1950's for the purpose of **offensive biowarfare research** which was legal and accepted in the McCarthyite era.
This is not to say that every EIS officer today is a biowarfare scientist. However, the core of them are, and they form a network which wields enormous influence in public health, in academia, in the medical press (and even the health pages of the mainstream press), in local health authorities and abroad in Europe and elsewhere.
EIS officers work to ensure that military, as opposed to public health, goals are achieved.
EIS officers will make decisions about biowarfare agents, such as Lyme borrelia, based on military calculations, not concern for the millions of victims worldwide.
A typical military objective, for example, could be to hide the fact of a leak from a biowarfare facility, so as not to cause the public to lose confidence in the men (and women) who run these supposedly maximum-containment labs.
A further concern could be the wish to prevent biowarfare scientists in other countries learning about a particular agent, its true effects on the human body, its diagnosis, prevention or treatment.
Human suffering, even of their own citizens, may not feature on the list of "concerns" of pragmatic military officers at any level.
Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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beaches
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posted
UP
This is so very important for everyone here to understand.
I've read about Polly Murray and what transpired in that small town in CT back in the 70s. Yes, the 70s.
Yet my children, myself and countless others have suffered so much since then...why? WHY? WHY?
There is no good answer or reason.
Elena, I want to thank you so very much for your posts and for your willingness to stand up and state the facts. You are one strong, brave person and a great advocate.
And yes, justice will be ours, eventually.
Posts: 1885 | From here | Registered: Jul 2012
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They have tried to create a climate of fear and intimidation, so that people are afraid to say the truth.
I am not saying there is no risk in publicly standing up to them - I've had threats and persecution myself - but we need to find a way to break the chain of fear.
The more of us who speak out, the more foolish and the more futile it becomes for them to try to maintain the cover-up through coercion and threats. Every threat and every attempt to intimidate someone into silence, or worse, brings more attention on our situation.
Sadly too may in our own movement, including leading members, think that we will somehow make progress by agreeing not to raise the issue of coverup, in return for some imagined or promised gain.
There will be no real progress till the coverup is exposed, of that I am sure. Polly Murray suffered for years, with a "psychosomatic" label on her head, and forty years later, thousands and thousands of Lyme patients still travel that same road.
Elena
quote:Originally posted by beaches: UP
This is so very important for everyone here to understand.
I've read about Polly Murray and what transpired in that small town in CT back in the 70s. Yes, the 70s.
Yet my children, myself and countless others have suffered so much since then...why? WHY? WHY?
There is no good answer or reason.
Elena, I want to thank you so very much for your posts and for your willingness to stand up and state the facts. You are one strong, brave person and a great advocate.
And yes, justice will be ours, eventually.
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. Jess.
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