Archive for the ‘Lyme’ Category

The New Lyme ICD 11 Codes Podcast

https://lymedialogues.podbean.com

The New Lyme ICD 11 Codes

June 3rd, 2020

Jenna Luche-Thayer was a senior advisor to the U.S. Government and United Nations.  Discovering that the ICD codes for Lyme had not been revised for 25 years, she formed an ‘Ad Hoc Committee’ of experts to change the codes and include many other symptoms, previously not included.  These Lyme Codes were ratified by the World Health Organisation and in 2022 on January 1st the new Lyme codes will be included in the global ICD11 system.

Jenna has recently published a book called $Lyme which exposes global fraud, corruption and human rights violations surrounding the Lyme Disease epidemic.

For more:  https://madisonarealymesupportgroup.com/2019/01/19/ad-hoc-committees-historical-improvement-in-the-icd-codes-for-lyme/

https://madisonarealymesupportgroup.com/2017/10/13/1st-officially-recognized-report-on-violations-of-lyme-patients-human-rights-is-released-updating-borreliosis-diagnostic-codes/

https://madisonarealymesupportgroup.com/2018/08/02/recognition-of-lyme-borreliosis-in-11th-international-classification-of-diseases/

https://madisonarealymesupportgroup.com/2018/12/19/will-the-idsa-dare-to-give-lyme-patients-coal-for-christmas/

https://madisonarealymesupportgroup.com/2019/04/27/breaking-news-definition-of-lyme-disease-dementia-has-improved/

https://madisonarealymesupportgroup.com/2019/04/13/lyme-disease-corruption-in-our-healthcare-system/

Category:

Activism, Lyme

Lyme Disease Made Man Consider Suicide

Lyme disease almost ended Aaron’s life; he was on the edge of doing the unthinkable because of his condition. If it were not for his young daughter, and the hope she gave him, Aaron might not be here today. Even though he wanted to end it all, he wanted to walk his daughter down the aisle more. Now, Aaron is looking forward to a bright future with his daughter.

Aaron suspects he contracted Lyme disease from tick bites he received while perusing his work as a wildlife photographer. In 2006 Aaron began to notice symptoms. He began to slow down and work was getting harder and harder. By 2008 the fatigue was undeniable and by 2010 Lyme disease had all but destroyed Aaron’s life. His symptoms had increased and multiplied; he was experiencing terrible muscle and joint pain, swelling, fatigue, and brain fog. Aaron had to quit working and was bedridden for two years while he desperately looked for answers.

He made the-all-to-familiar and frustrating rounds-jumping from doctor to doctor treatment to treatment–with no results. Eventually he found a Doctor in Missouri that diagnosed him with Lyme disease, and he was started on oral antibiotics. Aaron began to feel better but this only lasted 4-6 weeks until he went to Envita Medical Center.

___________________

**Comment**

Unfortunately, I think nearly every patient has been to this breaking point.  Lyme/MSIDS will sift you like wheat.

I’m thankful that there are these testimonials.  When you become side-lined by a complex, misunderstood illness that mainstream medicine frankly denies, you question your own sanity.  It puts you in a horribly isolated place where even family and friends don’t believe you.  Patients need to hear from others on this same albeit different journey.  I highly recommend getting to a local support group.

Good, effective treatment is imperative – and the sooner the better.  If you suspect tick-borne illness, please contact your local Lyme support group today for help.  Mainstream medicine is woefully uneducated about tick-borne illness.  Save yourself time, money, and anguish and get to a Lyme literate doctor with experience.

For more:  https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

BTW: If you find yourself in a place where Aaron was, don’t hesitate to get help.  

https://madisonarealymesupportgroup.com/2017/06/20/suicide-lyme-and-associated-diseases/

https://madisonarealymesupportgroup.com/2018/03/09/aggressiveness-violence-homicidality-homicide-lyme-disease/

https://madisonarealymesupportgroup.com/2018/07/05/suicide-poses-a-complicated-risk-in-those-with-infectious-diseases/

https://madisonarealymesupportgroup.com/2018/06/15/an-anthropologists-view-of-lyme-disease-and-suicide/

https://madisonarealymesupportgroup.com/2017/07/12/suicide-and-chronic-lyme-disease/

Don’t fight this alone. Get help – physically and mentally.  You will be glad you did.

Category:

Activism, Lyme, Psychological Aspects

Woman Gets Lyme Disease Diagnosis After 13-Year Battle, As Number of Cases Rises

https://www.cbc.ca/news/canada/new-brunswick/lyme-disease-amanda-kenny-1.5455668

Woman gets Lyme disease diagnosis after 13-year battle, as number of cases rises

37-year-old from Lepreau just received positive diagnosis after becoming infected in 2007
CBC News ·
The photo on the left shows what Amanda Kenny looked like before Lyme disease began attacking her body. The photo on the right shows after 13 years with Lyme disease. (Submitted by Amanda Kenny)

Amanda Kenny says she lived a regular life 13 years ago.

Kenny, from the Charlotte County community of Lepreau, was studying esthetics at Majestany Institute and taking care of her daughter.

“Everything was great. I was doing normal 24-year-old things, and then all of a sudden I woke up one morning and that was gone.”

Kenny, now 37 and a mother of two, has had more than a decade-long struggle with Lyme disease, a diagnosis she only received last month.

“The doctor … said to me, ‘I have never seen anyone or treated anyone with such a severe case of Lyme disease as you have.’ He did tell me that he didn’t believe he could help me.” (See link for story)

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**Comment**

Take this same story and multiply it by thousands and thousands who are going undiagnosed or misdiagnosed. This is playing out in every state and every country in the world.

Lyme/MSIDS is the ‘wall flower’ pandemic nobody wants to do anything about because it just isn’t a good money-maker like COVID.

 

 

Category:

Lyme

“Shapiro and Walker Operated As a Tag Team Throughout the Meeting”

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/

“Shapiro and Walker operated as a tag team throughout the meeting”

JUL 12, 2020 — 

Today’s letter to the Tick-Borne Disease Working Group. Why not send your own email requesting the removal of Shapiro?

———- Original Message ———-

From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov
Cc: (99 Undisclosed recipients)
Date: 07/12/2020 9:45 AM
Subject: “Shapiro and Walker operated as a tag team throughout the meeting”

TOUCHED BY LYME: TBD Working Group and FACA’s open meeting rules
https://www.lymedisease.org/tbdwg-faca-open-meeting-rules/

Donta to Walker:

“I’m dumbfounded why you would not want to try to understand the mechanisms of persistent Lyme. We know this happens with other infections”

To the Tick-Borne Disease Working Group,

One of the strategies of the racketeering scheme (Lisa Torrey vs IDSA) was to suppress evidence of persistent infection after extensive antibiotic treatment and then claim there is no evidence. The deliberate and well-orchestrated denial has left hundreds of thousands if not millions worldwide in a debilitated state.

Let me remind everyone on this panel that the maximum penalty authorized for a RICO violation is 20 years in jail but being investigated for a serious crime did not disqualify Eugene Shapiro from appointment to the group.

-Would we have appointed film producer Harvey Weinstein to the TBDWG while he was under investigation?

-How about Jeffrey Epstein or Bill Cosby while they were being investigated for a serious crime?

Whoever appointed Shapiro (to control the narrative) should be investigated for aiding and abetting.

Let’s all review what is known about Dr. Eugene Shapiro……………


Memorable and Not So Memorable Quotes by Lyme Disease Denialists

https://lyme.kaiserpapers.org/memorable-and-not-so-memorable-quotes-by-lyme-disease-denialists/#Shapiro

Quotes from Shapiro:

“Lyme disease prevention requires only minimal precautions; even for people living in areas with the highest  concentration of positively identified cases”:

-Eugene D. Shapiro, MD, Yale Children’s Health Letter, April 1995

“Over time, the [Lyme] disease tends to burn itself out, even without treatment, in many people”:

-Eugene Shapiro, MD, quoted by Karen Freeman in The New York Times, October 24, 1996

“Children with only non-specific symptoms, such as headache, fatigue, or arthralgia, are very unlikely to have Lyme disease. Serologic tests for Lyme disease should not be ordered for such patients because a positive test result is very likely to be a false-positive”:

-Eugene D. Shapiro, MD, in ACP’s Lyme Disease, page 131

“Nearly 90% of children who develop Lyme disease have either single or multiple sites of erythema migrans”:

-Eugene D. Shapiro, MD, ibid., page 132

“As many as 40% of the patients with well-documented late stage Lyme disease will not have had a preceding lesion of erythema migrans . . . as the only clinical manifestation of early Lyme disease. . . . The existence of a flu-like illness without erythema migrans of early Lyme disease has been clearly established”:

-Eugene D. Shapiro, MD, et al., “Early Lyme Disease: A Flu- like Illness Without Erythema Migrans,” Pediatrics 91, (1993): 456-59

“There is no evidence that congenital Lyme disease is a problem”:

-Eugene D. Shapiro, MD, in ACP’s Lyme Disease, page 132

“The prognosis of children with Lyme disease, both early and late, is excellent, with no evidence of chronic symptoms or long- term sequelae”:

-Eugene D. Shapiro, MD, ibid., page 132

“Because of the low risk of Lyme disease and the excellent prognosis of children who do develop Lyme disease,  prophylactic antimicrobial treatment is not recommended for children who are bitten by a deer tick”:

-Eugene D.Shapiro, MD, ibid., page

“In patients presenting with nonspecific symptoms, the positive predictive value of serologic testing for Lyme disease is low”:

-Eugene D. Shapiro, MD, ACP’s Lyme Disease, page 224

“There are a ton of people with non-specific symptoms and most of their positives are false positives [for the ELISA and Western Blot], so they think they have this diagnosis of Lyme”:

-Eugene Shapiro, MD, quoted by Stefanie Ramp in the Fairfield County Weekly, May 20, 1999

“If all you know is that you found a deer tick on your child, the risk is 1 to 2 percent at most of having Lyme disease.  And then greater than 90 percent of those will show a rash at the site of the bite.”:

-Eugene Shapiro, MD, in the April 1995 issue of Yale Children’s Health Letter

“Most ticks are not infected and even if a child has been bitten by an infected tick, 36 to 48 hours are needed before transmission of the bacteria takes place.”:

-Eugene Shapiro, MD, ibid.

“There are probably better ways to spend health-care dollars” than on a vaccine for Lyme disease:

-Eugene Shapiro, MD in the April 1995 issue of Yale Children’s Health Letter

“It [LYMErix vaccine] is fairly expensive, and I think that the biggest problem is not Lyme disease but anxiety about Lyme disease, and I’m not sure how effective the vaccine is against anxiety about Lyme disease….I don’t think most people are at really high risk for Lyme disease, so the benefits don’t necessarily qualify the costs.”:

-Eugene Shapiro, MD, a professor of pediatrics at Yale, quoted by Stefanie Ramp in the Fairfield Co. Weekly on May 20, 1999

“It’s usually not Lyme disease unless it looks, smells, and tastes like Lyme disease”:

-Eugene Shapiro, MD, in the April 1995 issue of Yale Children’s Health Letter

“If you only go to a Lyme literate doctor, you are likely to be diagnosed with Lyme disease, because that’s what they do. If you go to Midas, you’re going to get a muffler.” (Chronic Lyme sufferers believe that the medical world would benefit immensely from Shapiro having a Midas muffler installed on his person).

“So, you know, in an anecdotal sense, taking antibiotics and feeling better doesn’t mean that the antibiotics are the reason that you felt better. It may have something to do with the belief that this doctor cares for me, I’m doing something to help myself, it’s very complicated and we don’t know all the answers…”(Shapiro’s rambling and inane commentary was rightfully terminated by the host of the program).

-Maryland Public Television – Direct Connection – Lyme Disease – Under Our Skin Review – June 27, 2011

WHY IS SHAPIRO ON THE TBDWG????

Please call for his immediate removal.

Respectfully Submitted,

Carl Tuttle

Hudson, NH USA

____________________

**Comment**

Perhaps Shapiro is somehow related to Bill Gates?  They both seem to have extraordinary power over thousands if not millions of people’s health.

BTW: Shapiro urges the medical community to develop ways to prevent “healthcare-seeking behaviors” by parents who believed their children may have Lyme disease:

https://madisonarealymesupportgroup.com/2019/06/11/dr-eugene-shapiro-medically-unexplained-symptoms/

“…it’s very clear that simply telling parents that Lyme disease is not the cause of these nonspecific symptoms such as fatigue, various pain syndromes that is not sufficient and that we need a new paradigm to how to best manage such patients. Often it’s not the pediatric infectious disease specialists who doesn’t have an ongoing relationship with his patients who is likely the best but someone who can develop a trusting relationship with them. Very frequently these parents are seeking affirmation that these symptoms are real and in fact they are real it’s just that they’re not caused by Lyme disease…..” Eugene Shapiro

 

 

Category:

Activism, Lyme

Lyme Warrior Q & A

https://globallymealliance.org/dear-lyme-warriorhelp-13/

lyme warrior

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

I have tried several different medications for Lyme and am not getting any better. Do you think I just need to own up to the possibility that this is simply my reality and I should resign myself to it?

No! Treating tick-borne illness is complicated. It often takes a lot of trial and error to find the right treatment protocol, especially since what works for one patient might not work for another. When you’re not feeling well, it’s especially hard to be patient with the process. You just want to get better, and you don’t have the energy to keep waiting and trying things. I understand that. But difficult as it is, if you give up now, you will make your current situation your longterm reality. There were so many moments in my journey with Lyme disease and two other tick-borne illnesses—babesia and Ehrlichia—that I wanted to just throw in the towel. Thank goodness I didn’t, though. After many different medications over many years, I have been in remission for over a decade, and my life is better than I ever thought it could be.

I suggest keeping a daily log of your symptoms so that you can chart any small change, good or bad, and so you can also give a detailed report to your Lyme Literate Medical Doctor (LLMD), who may be able to tweak to your protocol to address any new issues. So many times my LLMD would say something like, “Oh, now that I’m hearing how brain fog is bothering you, I think we actually need to switch to an antibiotic that is better for neurological symptoms.” Or, “The symptoms you’re telling me about indicate inflammation, so I think we need to add an anti-inflammatory medication.” If this fine-tuning isn’t working, it may be time to seek a second opinionfrom a different LLMD. Sometimes it helps to have someone evaluate your case with fresh eyes. Be sure that you have been checked for all tick-borne diseases and are being adequately treated for any co-infections since a single tick bite can give you multiple infections.

Finally, it’s important to remember that medication is only part of the equation when treating tick-borne illnesses. Other factors like diet, sleep hygiene, and stress play a role in your body’s ability to heal. You may want to try complementary therapies such as integrative manual therapy or neurofeedback to help your medication work more effectively. There is always something new to try; never, ever settle!

What does the future look like for you?

This is a great follow-up to the last question. The answer is, I don’t really know, and that’s a good thing. When I was completely bedridden over a decade ago, the future looked bleak. I never thought I’d regain my independence. I wasn’t even sure if I’d ever be able to walk around the block again. But now I am living on my own, working, socializing, and exercising, and enjoying a full life.

My path to health wasn’t linear. After regaining some independence, I relapsed all the way back to the starting line. If the future looked bleak before, relapsemade me feel downright desperate. But I made it through, and have been in remission for over a decade, now that I know how to really manage my life in the context of these chronic illnesses.

Each year of this decade has been better than the last. There have been dips, of course: flare-ups of Lyme or babesia, acute illnesses like COVID-19 (link: https://globallymealliance.org/corona-with-a-twist-of-lyme/). But overall, I’ve made incredible strides since moving to Boston and starting graduate school in 2011. I can teach more classes now than I could after earning my M.F.A. in 2014. I can read for longer periods of time without getting neurologically overwhelmed. I bounce back faster when I push my body too far. I can ski more runs, swim more laps, paddle for more hours than I could a few years ago.

So, who knows how much more progress I will make in the next few years. Maybe I’ll be able to juggle even more work projects. Maybe I’ll be on a book tour. Maybe I’ll reduce some of my medications. Maybe I won’t need an afternoon nap. I can’t say for sure what the future holds, but I’m confident that more will be possible than I can currently imagine.

You mentioned that you can’t work a traditional full-time job, so you work a few part-time jobs that fit your schedule. How did you find those?

One of the hardest parts of living with chronic illnesses was accepting that I wasn’t going to be able to go back to the rigorous schedule I kept before I became ill. In order to maintain my health, I have to pace myself physically and neurologically. I also need to do adjunct therapies every week, which eat up time in my schedule, and I need to nap every afternoon. These needs—which I had to learn to see as just that, needs and not restrictions make it impossible for me to work a 9 to 5 job.

So I had to think outside of the box. What did I love to do, and how could I do that work on a flexible schedule? Instead of my old full-time high school teaching position, I now teach as an adjunct, at a creative writing center, and at colleges. My classes are scheduled in the mornings or the evenings, and class prep time is on my own. I was able to combine my passions for Lyme awareness/advocacy and writing into these weekly blog posts. I do one-on-one consulting work with writers, reviewing their work at home and then setting convenient meeting times (that’s even easier now, with meetings happening virtually).

The current climate is difficult because the economy was closed for so long, but it’s also a good time for patients like myself with unique scheduling needs because so many jobs have shifted to work-from-home. Therefore, you may now be able to find part-time work that offers a more flexible schedule than it previously did.

Moreover, I recently learned about Chronically Capable, an employment platform that aims to connect chronically ill patients with remote work-from-home jobs. I have no personal connection to or experience with this platform, but you might want to check it out. It’s important to think about what you can do and what skills you have to offer, instead of worrying about what you can’t do.

That said, working while chronically ill is not easy. You may not be able to cover all of your expenses. To address that Global Lyme Alliance has put together afinancial resource pagewhere you can find information on federal and state assistance programs and other resources.

jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.

 

 

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**Comment**

Fantastically practical post.

From experience I can also attest to the importance of persistence with treatment.  NEVER, EVER QUIT!  You need to be as, if not more persistent than the organisms who have invaded your body.

While it’s true that there can be blow-back that causes issues that you may not be able to change, by and large, treatment ameliorates most if not all symptoms.  Sometimes it’s as simple as finding the right drug.  Other times it’s as simple as finding the right adjunctive therapies and supplements that take away the remaining symptoms after treatment.

For me personally those things include:

Many of these supplements were determined after blood tests showed I was deficient; however, some were just found through trial and error.  One word of warning: be careful you don’t try too many things simultaneously as you won’t be able to determine if a singular thing is helping you or not.  Supplements cost money and you want to make sure it’s something you need because it’s an investment.

 

 

 

 

Category:

Activism, Lyme