Archive for the ‘Activism’ Category

MS Cure?

Photo Credit: UK Business Weekly

https://www.healthnutnews.com/this-scientist-is-on-the-verge-of-curing-multiple-sclerosis-for-2-3-million-patients/  by Erin Elizabeth, Health Nut News, Aug. 31, 2017

Multiple sclerosis is a terrible and debilitating disease where the body’s immune system is directed against the central nervous system. When that happens, according to the National MS Society:1

  • Within the CNS, the immune system attacks myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves.
  • The damaged myelin forms scar tissue (sclerosis), which gives the disease its name.
  • When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing a wide variety of symptoms.

Currently, there is no cure. Medication can often help make symptoms like double vision, blindness, as well as psychological or muscle issues more bearable but ultimately it robs people of their lives and shortens life expectancies. But that may all be changing.

Dr. Su Metcalfe believes that the attack on the nerve cells can be stopped thanks to a new medical development her company LIFNano has created. 2

She said in an interview:

“Some people get progressive MS, so go straight to the severe form of the disease, but the majority have a relapsing or remitting version.

It can start from the age of 30, and there’s no cure, so all you can do is suppress the immune response, but the drugs that do that have side effects, and you can’t repair the brain. The cost of those drugs is very high, and in the UK there are a lot of people who don’t get treated at all.” 3

Using the stem cell particle LIF, which is a part of the immune cell and is able to control and confine the attack on our bodies, she found a “small binary switch” which is able to regulate itself INSIDE the immune cell to NOT attack our body. However, it can attack when it needs to.

She went on to say,

“That LIF, in addition to regulating and protecting us against attack, also plays a major role in keeping the brain and spinal cord healthy. In fact it plays a major role in tissue repair generally, turning on stem cells that are naturally occurring in the body, making it a natural regenerative medicine, but also plays a big part in repairing the brain when it’s been damaged.” 4

Much more research needs to be done but this breakthrough seems quite promising and the team has set their sights on having found the cure by 2020.

Dr. Metcalfe also believes she and her team might be able to tackle dementia as well because LIF is a “major health factor for the brain.”5 Therefore, if they can get into the brain and protect it, it serves that they could prevent dementia.

**Comment**

This is indeed great news for Lyme/MSIDS patients due to the fact many with MS, dementia, and Alzheimer’s are initially misdiagnosed with those labels but are actually infected and vice versa.  All in all, many autoimmune diseases will potentially benefit from this treatment.

https://madisonarealymesupportgroup.com/2017/06/26/important-example-of-iv-antibiotics-for-lymemsids/

https://madisonarealymesupportgroup.com/2016/04/10/bugs-causing-alzheimers/

https://madisonarealymesupportgroup.com/2017/01/04/aluminum-alzheimers-ld/

Iowan, Jack Gordon, is a case discovery of 2 diseases NEVER found together before on 11.22.2015: Lewy Body Dementia, causing violent hallucinations, and Lyme Disease/MSIDS. Using his medical files, he was bitten by a tick 35 yrs. ago, but the doctors never acknowledged it by diagnosing or treating him.

You may recognize Lewy Body Dementia as what Robin Williams’ autopsy revealed:  https://madisonarealymesupportgroup.wordpress.com/2016/03/28/did-robin-williams-have-lyme/
https://jneuroinflammation.biomedcentral.com/articles/10.1186/1742-2094-8-90
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551238/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4399390/
https://www.scientificamerican.com/article/controversial-new-push-to-tie-microbes-to-alzheimer-s-disease/

 

When Lyme Isn’t Caught Early

https://www.lymedisease.org/touchedbylyme-treat-early/

TOUCHED BY LYME: When Lyme disease isn’t caught early

The question was posed on one of LymeDisease.org’s Yahoo discussion groups. A mother had found a bull’s-eye rash on her 5-year-old son. She took him to urgent care and was given two weeks’ worth of antibiotics. Is that enough, she wondered, or should she pursue something more?

The following remarkably detailed response was posted by another mother on the group. I feel there are many lessons to be learned from her hard-earned wisdom. With her permission, I share it with you here. In the interest of protecting her family’s privacy, she prefers to remain anonymous.

These comments represent my point of view as the parent of a daughter who has been fighting Lyme disease and associated infections for over 12 years now. I am just a mom, not a medical expert. My comments are based upon our journey and what I have read and observed and what has happened to us and to others we know. They are not a substitute for knowledgeable medical help and advice.

I do not want to scare you, but it has been my experience that people unfamiliar with Lyme disease tend to under-respect the damage it can do and I don’t want that to happen in your son’s case. I feel with Lyme it is better to be safe than sorry. And time is of the essence.

The damage that can be done by undiagnosed, untreated, or undertreated Lyme can be life-changing. In the early days of Lyme disease, it was discovered that by treating for FOUR weeks initially, the chances of a relapse later were greatly minimized. This is because Lyme has a four-week growth cycle and you do better treating for the entire length of the cycle.

The group that discovered this lost out politically and we are left with the modern conventional medicine treatment of two weeks. This creates the possibility of the disease recurring later in some people. As Lyme can be very difficult to diagnose and symptoms can come on slowly over a long period of time, it is possible to get very sick from a relapse before becoming aware of what exactly is going on. ILADS (International Lyme and Associated Diseases Society) doctors know this and treat for longer periods of time than conventional medical doctors.

I do not know what antibiotic your son is on, but our ILADS doctor says he normally uses doxycycline because it does well against Lyme and also does well against the most common other infections often contracted at the same time as Lyme. Ticks carry multiple infections and many patients have other infections in addition to Lyme, some of which are just as disabling and difficult to treat as Lyme. A bull’s-eye rash of any size is still considered evidence of exposure to Lyme disease. Some people with such a rash will never feel sick; their immune system will handle the infection. Others will get very ill right away. Others will become ill years later. No way to know which. Many people never see a rash and still get Lyme disease.

I suggest finding an ILADS-affiliated doctor who will make sure your son has optimum initial treatment. This offers the best possibility that this rash will not turn into illness later on. This practitioner can also tell you what to watch out for in the future that could indicate emerging Lyme, so that it can be treated early if it shows up. This doctor needs to be seen immediately. Within a week after exposure, Lyme bacteria can move into the central nervous system and become much harder to eradicate with treatment.

My daughter is only one of many examples of undiagnosed/untreated Lyme disease in a child. Her first symptoms were at eight years old; a horrific headache that lasted three months, along with some fatigue and low-level fever and viral symptoms. It looked like a sinus infection and after three rounds of various antibiotics, it slowly limped away and we were so glad that was over, whatever it was. We never saw a tick, never saw a bull’s-eye rash.

At 10, my daughter started having periodic episodes with bad headache, low-level fever, viral symptoms and fatigue.In between these, she was perfectly fine for weeks at a time. Not enough to get her pediatrician interested, but she was missing enough school and sports activities that it was starting to be a life issue. She also seemed to heal very slowly from injuries such as bruises and muscle pulls and strains. And though she hid it well and no one noticed at the time, she was dealing with some emotional and psychiatric issues.

At 12, she was a high-achieving scholar at an aggressive private school and excelling in all sports and thriving. She had an unlimited future. Until January 5, 2005, when she fell very ill with an apparent relapse of a stomach bug and never recovered.Huge headache, extreme fatigue, low-grade fever and lots of vomiting—for weeks and then months—while no one could figure out what was wrong. It took a year for the Lyme diagnosis and another two years after that for her first positive Lyme test – Lyme DNA found in her urine AFTER 1 year of expensive intravenous Lyme meds that we paid for out of pocket. And then another positive DNA test after six months more of intravenous Lyme meds.

She is almost 25 now. Her formal schooling consisted of completing sixth grade and four years of high school English with a home-school co-op. She is intelligent, but has major cognitive processing issues and her brain tires easily. She cannot attend school or work.  Though still fatigued, she can can occasionally bike, get in the pool with her cousins, or go to a restaurant.  These are huge for her; she spent the first few years of her illness on the couch in utter misery barely able to carry a simple conversation. This is much better, though not what any of us hoped for.

Her various infections, including Lyme, have caused an autoimmune disease that causes her brain to attack her dopamine receptors. This has caused horrific OCD symptoms which would have caused her to end her life had we not found great relief with intravenous immunoglobulin (IVIG) treatments ($15K list price for meds for one treatment; she does a treatment each month, thankfully covered by my husband’s insurance). I left my engineering career to care for her in 2006, and I am still a major source of support for her.

We have spent several hundred thousand dollars out of our own pockets to try to get my daughter well. Our insurance company has spent more than that. Things get slowly better, but she is still not self-supporting and we have concern for her future. We are very fortunate – most people cannot afford the amount of treatment we have been able to give our daughter.

My daughter’s story is not the worst-case scenario. She now has a positive quality of life after years of that not being the case. Some people never get that far. This is what CAN happen if Lyme disease is not aggressively treated at the very beginning.

Everyone reacts to Lyme differently. Some people, even though extremely sick, respond well to standard ILADS treatment and soon put the disease behind them forever. Some people, like my daughter, just can’t clear it even after years of treatment. This is why I encourage you not to roll the dice with your son.See an ILADS doctor who will treat more aggressively and for longer than your regular physician. You may have to pay out of your own pocket. I think it is a good investment. I encourage you to educate yourself about this disease and the controversy over treatment guidelines.

Even if you treat aggressively now, you want to be aware of what to look for should Lyme show up later on. Based upon my reading and people I have known, common symptoms of slowly-emerging or re-emerging Lyme are joint pain that may move around and come and go, injuries that don’t heal well or quickly, digestive issues, fatigue, and emerging neurological symptoms that start to get scary.

Lyme tests so far are not reliable. A Johns Hopkins study in 2005 found that only 45% of patients who were later found to have  laboratory evidence of Lyme disease were positively diagnosed by the standard two-tier test done by conventional medical doctors (ELISA followed by a Western Blot if ELISA is positive). Do not trust a Lyme test to rule out Lyme disease.

You may feel foolish going to the trouble of finding an ILADS doctor.  Yet, I believe it is the best thing you can do to protect your son against trouble. Be sure to let the person you speak with at the doctor’s office know you have a child with a bull’s-eye rash from a few days ago. They should see you immediately. If not, get a different doctor. Lyme can move into the central nervous system within the first week after exposure. Then it is much harder to eradicate and chances of relapse increase. Some doctors offer “recent tick bite” appointments for just this sort of thing.

Wishing you and your son all the best,

A mom who has been there

***

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .

**Comment**

Amen and Amen!  Do NOT mess around with this.  Hit it hard and hit it early.

 

For more:  https://madisonarealymesupportgroup.com/2017/08/12/lyme-disease-case-started-with-headaches/

https://madisonarealymesupportgroup.com/2017/08/13/diagnosed-with-hiv-14-year-old-really-had-lyme/

https://madisonarealymesupportgroup.com/2017/08/13/support-group-for-parents-of-children-with-lyme/

Facebook Posts Used Against Lyme Patient in Court Case

https://www.lymedisease.org/touchedbylyme-facebook-lyme/  by Dorothy Kupcha Leland Aug. 31, 2017

TOUCHED BY LYME: Facebook posts affect Lyme disease lawsuit

It is very common for people who actually have Lyme disease to be told by their doctors they don’t have it. They may suffer for years, perhaps being treated for conditions they don’t actually have, which often makes things worse. (Over 70% of MyLymeData participants report being initially misdiagnosed.)

Many of these folks find their way onto social media groups, where they continue to search for answers. They may post things on Facebook like “I’m pretty sure I have Lyme disease, but my doctor says no.”

In time, they may find their way to new doctors, eventually being properly diagnosed and treated for tick-borne diseases. At this point, especially if and when they are finally feeling better, they may say, “Dang. I’m going to sue that so-and-so who said I didn’t have Lyme disease.”

That’s more or less what happened in the case of a Pennsylvania woman, whose case was thrown out of court because of those early Facebook posts where she said she thought she had Lyme disease. It has to do with the statute of limitations and the legal process of discovery.

The following article, reprinted with permission from the law firm of Buchanan, Ingersoll and Rooney, PC, explains more about the case.

Pennsylvania Supreme Court To Consider Effect Of Facebook Posts On Discovery Rule
by Samantha Southall and Cathlin Sullivan

The Pennsylvania Supreme Court has agreed to hear an appeal in a medical malpractice case that made a woman’s personal Facebook posts about her health conditions central evidence in a dispute regarding whether she knew or should have known that she had Lyme disease.

In Nicolaou v. Martin et. al., Plaintiffs Nancy and Nicholas Nicolaou sued several medical providers for malpractice. Ms. Nicolaou alleged that the providers had negligently failed to diagnose Lyme disease after she was bitten by a tick in 2001 and subsequently experienced a number of symptoms.

During the course of her treatment with these providers, she was tested for Lyme disease four times, and all tests were negative. An MRI suggested that she may be suffering from either Lyme disease or Multiple Sclerosis. She was diagnosed with MS, and continued to treat with the various defendant providers through 2008.

In 2009, suspecting that she actually had Lyme disease, Ms. Nicolaou began treatment with Rita Rhoads, a nurse practitioner. During five separate appointments from 2009 through 2010, Nurse Rhoads recorded an assessment of “probable Lyme,” and prescribed antibiotics to treat the suspected Lyme disease. Ms. Nicolaou’s condition improved dramatically while taking the antibiotics.

In order to confirm the diagnosis, Nurse Rhoads recommend a diagnostic test offered by an independent company called IGeneX. Ms. Nicolaou testified that she did not get the test done until February 1, 2010, because she wanted to see if the antibiotics would work. Nurse Rhoads also testified that Ms. Nicolaou had not had the test done because she could not afford it. Ms. Nicolaou had stopped purchasing health insurance in 2005.

The results from the IGeneX test were positive for Lyme, and Nurse Rhoads communicated this result to Ms. Nicolaou on February 13, 2010. Ms. Nicolaou posted the information to her Facebook page:

Today i got my blood test back from igenix labs to test for lyme disease and it came back positive!!!!!!!!!!!!! i had been telling everyone for years I thought it was lyme and the doctors ignore me, thank you god you have answerd my prayers!!!!!!!!! Now its all in your hands!!!!!!!!!!!!!

A reply from one of her Facebook friends stated, “[Y]ou DID say you had Lyme so many times!”

The lawsuit was initiated on February 10, 2012, and the defendants averred an affirmative defense of a violation of the statute of limitations since Ms. Nicolaou had not been treated by any of them since 2008. In response, the Plaintiffs alleged that the discovery rule applied (i.e., the statute of limitations does not apply because reasonable people could not have discovered any negligence until February 13, 2010 at the earliest).

Following discovery, the trial court granted summary judgment for the defendants. In an appeal to the Superior Court, a three-judge panel reversed the trial court and, in December 2016, after the original defendants filed a motion for reargument en banc, the Superior Court reinstated the trial court’s decision.

In its decision, the Superior Court stated that the discovery rule requires a factual determination of whether the party, despite the exercise of reasonable diligence, was unaware of his injury and unable to determine its cause. Ms. Nicolaou argued that the discovery rule should apply because although she thought she had Lyme, it was not confirmed and she did not believe it – and she did not receive confirmation of the diagnosis until February 13, 2010.

The Court took note of her Facebook posts, stating that the posts “bear on the fallacy of her claim on appeal that ‘she didn’t believe it.’” These statements, taken together with Ms. Nicolaou’s course of treatment with Nurse Rhoads, led the Court to conclude that it was “without question” that Ms. Nicolaou should have known, and could have objectively proven, as early as 2009 that she had Lyme disease. As such, “reasonable minds would not differ” that she should have known and could have proven that she had Lyme disease at that time.

On August 18, 2017, the Supreme Court of Pennsylvania granted the Nicolaous’ appeal. The issues on appeal are: (1) Whether the discovery rule should have applied “when Plaintiff did not, and was financially unable to, confirm Respondents’ negligent misdiagnosis until … February 13, 2010,” and (2) Whether there is a genuine issue of material fact which should be presented to a jury as to whether the discovery rule should apply?

It will be interesting to follow this case, with regard to both the discovery rule implications and the extent to which the Pennsylvania Supreme Court relies on the social media activities of a plaintiff in assessing a person’s state of mind and rendering a decision. Stay tuned!

Samantha Southall and Cathlin Sullivan are attorneys in the Philadelphia office of Buchanan, Ingersoll and Rooney, PC.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .

 

Senators Grill Health Commissioner Over Lack of TBI Prevention

http://wskgnews.org/post/ny-senators-question-states-efforts-fight-tick-borne-illnesses#stream/0

NY Senators Question State’s Efforts To Fight Tick-Borne Illnesses

By KAREN DEWITT • AUG 30, 2017

Gov. Andrew Cuomo’s health commissioner received a grilling from state senators at a hearing this week on whether New York is doing enough to combat tick-borne illnesses.

Health Commissioner Howard Zucker told the senators that this year, there are fewer deer ticks and fewer reported cases of Lyme disease in the state.

But, he said, the number of Lone Star ticks is up. They can carry diseases such as Rocky Mountain spotted fever and even cause someone to become allergic to eating red meat.

The health department also reported that they’ve found cases of the Powassan virus in ticks further upstate, this time in Saratoga County. One person died after being infected. The rare but serious illness can cause encephalitis, the inflammation of the brain.

The senators, mostly Republican and mostly from upstate and Long Island districts, closely questioned Zucker on whether the health department is doing enough in light of the discovery of these new, alarming diseases and conditions.

Sen. Sue Serino of the Hudson Valley, who is chair of the Senate Task Force on Tick-Borne Illnesses, questioned whether the number of illnesses is actually down or if there’s underreporting and misdiagnoses. She said children in her district often don’t know the basics about how to respond to a tick bite.

“I ask the kids in the class, ‘How many children know about ticks and Lyme disease?’ ” Serino said. “And you have about a third of the class raise their hands.”

Serino said just having the information on the health department’s website is not enough. Sen. Betty Little of the North Country wondered why the Cuomo administration is not running ads on television warning people of the dangers.

“TV ads that try to educate people a little bit better, about ticks and what to watch for,” Little said. “Especially, with the Powassan thing, where we had people die.”

Zucker responded that he wants to focus more on social media campaigns instead.

“We are working on that on multiple fronts,” Zucker said.

And he and his aides said the number of tick-related illnesses reported can vary from year to year.

But the senators were not convinced. Sen. Ken LaValle, who represents portions of eastern Long Island, said Lyme disease has reached epidemic proportions in his district. He said more research needs to be funded, and he questioned whether state health officials are doing enough.

“We need to ratchet up what we are doing,” LaValle urged.

“We are attacking it with a lot of enthusiasm,” Zucker responded.

LaValle urged Zucker to “think big” for the upcoming state budget.

Cuomo has adopted a tradition of limiting state spending to about a 2 percent rate of growth per year. That has meant many state agencies, including the health department, have budgets that are essentially frozen.

Reporters asked Zucker whether he felt too constrained by the budget targets to advocate for more money to fight tick-borne illnesses. He said no, but he said he believes the department can work smarter with the money it already has.

“Sometimes, it’s not just an issue of money but how we message things and get communication out there,” he said.

Zucker said health officials plan to do more. This fall, the department will coordinate with the state Department of Environmental Conservation to include more information in hunter education classes about the risks of tick bites. In 2018, they will enact a statewide surveillance and response plan, modeled on the one already in place for mosquito-borne illnesses.

After the hearing, Serino issued a statement, saying that the health department efforts so far have fallen short and that “more is needed from our partners at the state and federal levels” for research, prevention and to develop more effective testing and treatment options.

Microbiologist Holly Ahern on Lyme Disease: How Did We Get Here?

   Aug. 30, 2017 – Approx. 31 Min

Microbiologist Holly Ahern Speaks at Focus on Lyme 2017

https://www.lymedisease.org/ahern-focus-on-lyme/?utm_source=sept+2&utm_campaign=re-send+aug+26–heart&utm_medium=email

Professor Holly Ahern, of State University of New York Adirondack, has extensive teaching and research experience in bacteriology and molecular biology. She’s the author of nationally published textbooks on microbiology, cell biology, and molecular biology. She’s also an expert on the scientific literature pertaining to Lyme disease and other tick-borne infections.

Professor Ahern came to her Lyme expertise the hard way, as the mother of a daughter with Lyme disease. Her professional knowledge was put to the practical test of having to navigate the complex care of a Lyme patient. She understands the science and has complete empathy for the suffering that tick-borne diseases inflict on patients and families.

Earlier this year, she gave an illuminating presentation at the Focus on Lyme Scientific Conference in Scottsdale, Arizona. Addressing the historical events that have contributed to the Lyme disease epidemic in the US, she reminds the audience of something they know too well— “we are not in a good place when it comes to Lyme disease.” Then, she answers the question: how did we get here?

Ahern clearly lays out the “alternative conclusions” that over past decades have perpetuated the idea that Lyme disease is “hard to catch and easy treat.” That misconception continues to be encouraged by the CDC and IDSA today.

She points out that, in fact:

  1. Lyme is easy to catch: “Lyme disease is the second most common infectious disease in the United States.”

  2. Testing for Lyme is highly inaccurate: “The recommended serological assays for Lyme disease are falsely negative more than half the time.”

  3. Lyme infection can be chronic: “There are hundreds of peer-reviewed studies that show the relationship between bacterial infection and chronic disease, not just Lyme disease.”

  4. Antibiotics do treat infection: “Of the clinical trials done to date, not one of them provides conclusive scientific evidence to prove antibiotics show no benefit to patients with chronic symptoms.”

Ahern reviews the epidemiology used in the discovery of Lyme disease and the science from the original studies of 40 years ago demonstrating the following facts:

  1. Only 1 in 4 patients with Lyme will develop the bull’s-eye rash.
  2. Only 50% of patients with Lyme will develop the antibodies needed for a positive test.
  3. Only 50% of patients with Lyme will test positive using the CDC “gold standard” two-tier test.
  4. Only 50% of patients treated with two weeks of antibiotics will get better.

Ahern uses humor and wit to describe the current scientific data which refutes the notion that patients with persistent symptoms from Lyme disease are not helped with longer term antibiotics.

More on Ahern:  https://madisonarealymesupportgroup.com/2017/07/21/busting-lyme-myths-nyc/

https://madisonarealymesupportgroup.com/2017/06/23/no-bias-in-mmwr-for-any-other-infectious-disease-requiring-iv-antibiotics-except-for-lyme/

https://madisonarealymesupportgroup.com/2017/04/14/transmission-time-for-lymemsids-infection/

https://madisonarealymesupportgroup.com/2017/03/03/microbiologist-on-lyme-ninja-radio/