Archive for the ‘Lyme’ Category

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

Can Lyme Be Sexually Transmitted or Passed on to a Fetus?

https://rawlsmd.com/health-articles/can-lyme-be-sexually-transmitted?

Can Lyme Be Sexually Transmitted or Passed on to a Fetus?

by. Dr. Bill Rawls
Updated 7/27/18

The official word from experts is that Borrelia burgdorferi, the microbe commonly associated with Lyme disease, cannot be spread sexually. However, whole families (including small children) testing positive for the microbe would suggest otherwise.

Experts base their assumptions on the fact that Borrelia burgdorferi concentrations in semen in people known to have Lyme disease are typically quite low. In addition, trans-utero spread (across the placenta during pregnancy) has not been scientifically documented.

This is in line with traits of the microbe. Host-dependent microbes can spread from host to host through a variety of different pathways, but they typically specialize in primarily one pathway. Borrelia’s preferred pathway of spread is by way of biting insects, most commonly ticks. It has honed this pathway over millions of years.

Other corkscrew-like bacteria, however, do specialize in sexual and congenital transmission. The most well known is Treponema pallidum, the microbe that causes syphilis. It’s interesting that Lyme disease and syphilis share many common symptoms and the two microbes are actually similar in many ways — except that Treponema has been honing the sexual transmission pathway for about as long as Borrelia has been taking advantage of ticks.

The fact that the two microbes are so similar might suggest that Borrelia could transmit sexually or congenitally. Borrelia is a master opportunist; if an easy opportunity arose to spread sexually or cross through the placenta into a new host, it probably would. Using its corkscrew shape, it can bore through any tissues in the body and show up almost anywhere.

The bottom line is that sexual and congenital propagation of Borrelia is possible, but much less likely than other microbes that typically spread by sexual transmission. If it were to occur, it would probably be from an infected male passing Lyme disease to a female via semen. Passing the microbe from infected female to male partner is much less likely. An infected female who became pregnant, however, could also pass the bacterium along to the fetus through the placenta.

To reduce the possibility of transmission, men suspected of having Lyme disease should use condoms during intercourse. If pregnancy is desired, antibiotics or antimicrobial herbs should be administered to reduce concentrations of the microbes before unprotected intercourse. Ideally, attempts for pregnancy should be deferred until Lyme disease symptoms have subsided.

For a pregnancy complicated by Lyme disease, the mother should undergo antibiotic treatment, especially for acute Lyme disease — but always under a doctor’s supervision. Tetracyclines, including doxycycline, should be avoided during pregnancy. Herbal therapy can be a good option if antibiotics are not tolerated.

 

REFERENCES:
1. Stricker RB, Middelveen MJ. Sexual transmission of Lyme disease: challenging the tickborne disease paradigm. Expert Rev Anti Infect Ther. 2015;13(11):1303-6.
2. Hercogova J, Vanousova D. Syphilis and borreliosis during pregnancy. Dermatol Ther. 2008 May-Jun;21(3):205-9.
3. Williams C et al. Maternal Lyme disease and congenital malformations: a cord blood serosurvey in endemic and control areas. Paediatr Perinat Epidemiol. 1995 Jul;9(3):320-30.
4. Strobino B et al. Lyme disease and pregnancy outcome: a prospective study of two thousand prenatal patients. Am J Obstet Gynecol. 1993 Aug;169(2 Pt 1):367-74.
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**Comment**
I find it highly interesting that even though mother and baby can test positive for Lyme disease, the CDC still states congenital transmission rarely occurs, even though nobody’s counting cases:  https://madisonarealymesupportgroup.com/2020/02/19/how-can-mother-to-fetus-transmission-of-lyme-disease-be-rare-when-no-one-is-counting/
In a nutshell, researchers collected specimens and then tested them.  They point out that initial tests did not find the virus but further sampling of the placenta showed virus-positive results.
There’s a few important points:
  1. If researchers tested Lyme patients multiple times in many different places within the body like they did for these babies who supposedly have COVID, they would find Lyme too.  This just doesn’t happen.  This is a perfect example of research bias.
  2. Testing for COVID is abysmal and shouldn’t be trusted on its own:  https://madisonarealymesupportgroup.com/2020/05/07/was-the-covid-19-test-meant-to-detect-a-virus/
  3. People are equating a positive COVID test result with illness, yet many are testing positive and have ZERO symptoms which means they aren’t sick.  They just show antibodies. This can happen with Lyme too.  My dog tested positive for Lyme and had ZERO symptoms. My vet told me he would forever test positive for Lyme. Meanwhile my husband and I both test negative on the arbitrary and unscientific 2-tiered CDC testing but positive on a more sensitive antibody test by IGeneX.  This issue of flawed testing is a real fly in the ointment:  https://madisonarealymesupportgroup.com/2020/03/01/study-cdcs-2-tier-lyme-testing-inaccurate-in-more-than-70-of-cases/, https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/
  4. The babies testing positive for COVID are fine, yet one continued to test positive.  I wrote about this before when a friend kept testing positive despite being completely healthy.  This person was detained in the hospital for weeks on end entirely due to a continuing positive test, but he had ZERO symptoms.  This should be a wake-up call.
  5. The best article on this is here:  https://madisonarealymesupportgroup.com/2020/07/10/coronavirus-why-everyone-was-wrong/  This expert immunologist explains that it’s highly likely most people testing positive for COVID is purely due to viral debris (which is NOT infectious).

As to sexual transmission of Lyme, a recent study by Scott had some interesting findings: https://madisonarealymesupportgroup.com/2020/06/12/formidable-evidence-for-sexual-transmission-of-lyme-disease-first-study-to-document-aca-rashes-in-canadian-patients/

Excerpt:

  • Case 4 provides confirmation for an ACA rash and gestational Lyme disease (club feet at birth).  Both parents tested positive for Bbsl.

Not only did the parents have definitive proof of chronic Lyme, THEY HAD SYMPTOMS – unlike these COVID positive babies, and many others testing positively without ANY symptoms whatsoever (which simply means they are NOT sick).  

I’m not sure what has happened in the world of science but it is riddled with this sort of nonsense.  The two diseases couldn’t be handled more differently.  I guarantee you that if researchers kept poking, prodding, and retesting chronic Lyme patients, they too would eventually find Bb, but this just doesn’t happen.  Frankly, with Lyme, they aren’t looking hard or long enough.

It’s quite clear to me that researchers are rewarded for positive COVID findings while they are demoted for positive Lyme findings.
Lyme just isn’t sexy.  
Lyme/MSIDS has become the ugly wall-flower in the corner of the room – which BTW is truly a world-wide pandemic that isn’t going away.

BTW: I’m nearly 99.9% certain I got Lyme sexually from my husband.  To read about my story as well as other research on it:  https://madisonarealymesupportgroup.com/2017/02/24/pcos-lyme-my-story/  All my initial symptoms were gynecological but I didn’t know then what I know now….

Category:

Lyme, Testing, Ticks, Transmission

You Know Your Body Best

https://globallymealliance.org/you-know-your-body-best/

by Jennifer Crystal

…we grow up thinking of doctors as all-knowing. Whatever ‘the doctor’ said—be it the Primary Care Physician, the family doctor, or the ER doctor—was once deemed absolute.

This doesn’t have to be the case.

When I was originally diagnosed with Lyme disease and two co-infections—babesia and Ehrlichia—I took oral antibiotics for six weeks. They didn’t work as effectively as my doctor had hoped, so he suggested I switch to intravenous antibiotics through a PICC line. I had been on the PICC line successfully for about seven months when one afternoon I was suddenly gripped with searing abdominal pain.

I was eating a banana with peanut butter when I felt a stabbing, wrenching ache just under my right rib cage. Dropping my snack, I clutched my side, grew dizzy, and started to sweat. Trying to escape the pain, I ran into the next room, where I collapsed on the floor, writhing and screaming. 

Maybe it’s from the PICC line,” exclaimed my worried mother. 

I shook my head. The attack felt too localized to be related to the PICC line, which was in my left arm.

Maybe it’s appendicitis,” she suggested.

Again, I shook my head. The appendix is lower,” I gasped. This pain is right under the rib cage.”

We drove to the ER. I screamed the whole way, feeling like someone was stabbing me with a knife over and over. 

The ER doctor did a scan, read it, and diagnosed constipation.

I looked at him quizzically. I have a lot of medical issues,” I said, “but constipation isn’t one of them. This pain is far more severe than constipation.”

He shrugged. Well, your scan shows a lot of stool in your colon, so that’s what it is.”

Turns out, what this doctor saw wasn’t stool, it was gallstones. He had read the scan backward, mixing up the colon with the gallbladder. Thankfully, my Lyme Literate Medical Doctor (LLMD) realized what was really going on. The intravenous antibiotics had caused gallstones, a rare side effect of the particular medication I was taking. I was having a gallbladder attack, brought on by eating a fatty snack. I went to another hospital, where I had emergency gallbladder removal.

My LLMD and my surgeon knew the original ER doctor was wrong. So did I. I didn’t know I had gallstones, but I knew I wasn’t suffering from constipation. I knew that what was going on in my body was different—more severe—than what the ER doctor was telling me, and I spoke up.

Patients with tick-borne diseases often need to do this. It can take years for some patients even to get diagnosed, because the doctors they’re seeing aren’t well-versed in tick-borne illnesses and don’t put together what are often nebulous symptoms. Moreover, because diagnostic tests are so faulty, some patients get negative results and are told they are fine. Even once diagnosed, other doctors treating patients for acute issues may not understand the complexities of underlying tick-borne infections, and may dismiss them as irrelevant.

This is when Lyme patients need to advocate for themselves. Those suffering from Lyme and other tick-borne illnesses need to explain their symptoms or diagnoses, push for tests, and reject any doctor who doesn’t have an answer for them and move on to one who does. This last action can be the hardest of all, because we grow up thinking of doctors as all-knowing. Whatever “the doctor” said—be it the Primary Care Physician, the family doctor, or the ER doctor—was once deemed absolute.

This doesn’t have to be the case.

There are many good doctors, and often what they say is correct. But when you feel unheard or invalidated, or simply have a gut feeling that something more is going on with your body, you have a responsibility to find a different doctor. This isn’t always easy to do when you’re sick and tired and have to deal with insurance. But it’s worth it. Had I listened to the ER doctor and accepted his diagnosis of constipation, I might have eventually suffered a fatal gallbladder attack. Had I stopped with the first doctor I saw with flu-like symptoms back in 1997, I might still be bedridden, never accurately diagnosed with tick-borne illnesses. 

No one knows your body better than you. When you’re a patient, you become so in tune with every little change in your body, and that’s a good thing. I can tell when my temperature is 98.4 and I can tell when it’s 99.1; the thermometer just confirms what I already know. I know the difference between what it feels like when I’m getting sick, and what it feels like when I’m just run down. You likely do, too. It can be easy to be swayed by other people’s opinions. They’re well-meaning when they say, Maybe you have the flu,” or maybe it’s the weather.” But only you know because you can feel exactly what’s going on in your body. 

Being thus attuned puts Lyme patients and those with chronic illnesses ahead of the learning curve during the current COVID-19 pandemic. Suddenly everyone is aware of every cough, sniffle, or temperature fluctuation. Lyme patients already know what’s typical for them—what signifies baseline health, what signifies a Lyme flare, and what signifies a different acute illness—and that is especially helpful at a time when medical facilities are overwhelmed as they are now and many appointments are being conducted via telehealth. We can notice important changes in our bodies and explain them to our doctors.

So trust your instincts. It’s okay to speak up for what you believe you need. It’s okay to seek a second, third, or even twelfth opinion. Your body is counting on you to give it the best possible care, and only you know what that feels like. 

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

Category:

Activism, Lyme

The Disease That’s Mistaken For COVID-19

https://www.thearticle.com/the-disease-thats-mistaken-for-covid-19?

The disease that’s mistaken for Covid-19

by ANDREA BUSFIELD

The disease that's mistaken for Covid-19

Photo: Patrick Pleul/dpa-Zentralbild/ZB

Five years ago, Alex Patsan thought she was going to die. The Australian mother of two was unable to walk or talk properly and lacking the strength to even cut up an apple for her children’s lunchboxes, the mum-of-two began the heartbreaking task of preparing her family for what seemed like the inevitable end to her battle with an insidious illness known as Lyme Disease.

“It was 2015,” she said, “and it was my worst year. The pain was terrible and the inflammation in my brain was so bad I remember thinking I better prepare my children in case I didn’t make it.”  (See link for article)

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For more:  https://madisonarealymesupportgroup.com/2020/07/02/lyme-disease-symptoms-could-be-mistaken-for-covid-19-with-serious-consequences/

https://madisonarealymesupportgroup.com/2020/05/30/a-tale-of-two-pandemics-lyme-covid-19-dr-bransfield/

Category:

Lyme, Viruses

Webinar Series to Highlight Tick Problems and Solutions for Pennsylvania

https://news.psu.edu/story/624662/2020/07/01/impact/webinar-series-highlight-tick-problems-—-and-solutions-—-pennsylvania

Webinar series to highlight tick problems — and solutions — for Pennsylvania

Tick webinars
Penn State Extension is hosting a 10-part webinar series on ticks.

IMAGE: PENN STATE

Kelly Jedrzejewski
July 01, 2020

UNIVERSITY PARK, Pa. — Did you know that Pennsylvania is ranked No. 1 in the nation for Lyme disease cases? As part of Penn State Extension’s efforts to educate and share information, educators will be hosting a 10-part webinar series on ticks and disease prevention starting July 9 and running through Sept. 17.

Erika Machtinger, assistant professor of entomology, is part of the extension team that will be hosting the webinar series.

“Since ticks are a major concern in the commonwealth, the idea is that folks will get a basic and understandable foundation for how to protect themselves, their families and their animals from vector-borne diseases,” she said.

Penn State Extension piloted a workshop for vector-borne diseases in the fall that was successful. Machtinger explained that an in-person workshop was scheduled for May but had to be canceled due to concerns about the coronavirus pandemic.

“We wanted to continue the series because of the prevalence of vector-borne diseases in Pennsylvania,” she said. “We also thought it was fitting because people might be spending more time outside.”

In Pennsylvania, several species of ticks are of concern to both people and animals, and several pathogens are associated with those ticks. Along with native ticks, there are concerns about an invasive tick species and its impact on cattle.

“We’ve put together a great team to deliver this series, from insect taxonomists to integrated pest management specialists to wildlife biologists,” said Machtinger. “We’ll be delivering the spectrum of information from many angles.”

Each webinar is one hour and will take place at 2 p.m. and 6 p.m. on the scheduled dates. The webinars, which will be recorded for later viewing, include ample time for moderated question and answer sessions.

To register, visit http://extension.psu.edu/tick-webinars.

Dates and topics are as follows:

–July 9: “Vector-borne Disease Basics.”

–July 16: “Ticks of Pennsylvania.”

–July 23: “Protecting Pets from Tick-borne Diseases.”

–July 30: “Tick Biology.”

–Aug. 6: “Tick Protection Around the Home.”

–Aug. 13: “Protecting Yourself from Tick Bites.”

–Aug. 27: “Lyme Disease and Other Tick-borne Diseases in Pennsylvania.”

–Sept. 3: “Tick Risks for Pennsylvania Cattle.”

–Sept. 10: “Protecting Your Horses from Tick Bites.”

–Sept. 17: “Hunters and Vector-borne Diseases: A Tick-ing Time Bomb.”

“Education on vector-borne diseases is an incredibly powerful tool to help protect people and animals,” Machtinger said. “Understanding the tools that you need to have in your toolbox to prevent tick and mosquito bites can reduce anxiety about being outdoors and make a difference in reducing vector-borne disease risk.”

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Category:

Activism, Lyme, Ticks, Transmission