Archive for the ‘Lyme’ Category

Leaky Gut Syndrome: A Treatment Guide

https://www.treatlyme.net/guide/leaky-gut-syndrome-a-video-treatment-guide

By Dr. Marty Ross

Leaky_Gut_Syndrome_feature

Leaky Gut Syndrome in Lyme Disease

In this video article I explain

  • the medical pathology of Leaky Gut Syndrome,
  • the causes of Leaky Gut Syndrome,
  • why Leaky Gut Syndrome leads to food allergies and inflammation, and
  • an approach to treat and fix Leaky Gut Syndrome.

Watch first, then read the details about my treatment recommendations in the area below the video. Note, there are limited studies in humans regarding whether treating leaky gut syndrome makes a real difference. However, in my practice, I find benefits for most of my patients when I treat Leaky Gut Syndrome.  (Go to link for article)

 

Category:

Gut Health, Lyme

Lyme Disease Misdiagnosed as Shingles

https://danielcameronmd.com/lyme-disease-misdiagnosed-as-shingles-in-a-62-year-old-man/

LYME DISEASE MISDIAGNOSED AS SHINGLES IN A 62-YEAR-OLD MAN

man with lyme disease and shingles at doctor's office

A recent article, published in the journal Clinical Case Reports, describes the case of a 62-year-old man, from Norway, who was initially diagnosed with shingles, a viral infection which produces a painful skin rash with blisters in a localized area on the body. [1] Shingles, also known as herpes zoster, is common in older individuals who have had chickenpox.

By

According to Hansen and colleagues, the patient was admitted to the emergency department complaining of epigastric pain that had been ongoing for 4 to 5 weeks. “He described a constant pain with episodic worsening,” writes Hansen. The pain began with a rash in the man’s right upper quadrant area.

Physicians considered several diagnoses. The man had a history of migraines, anxiety, colon polyps, and had been treated for gastroesophageal reflux disease (GERD). Small gallbladder stones were present but were not acute.

The man was diagnosed with shingles and prescribed acyclovir and pregabalin. Despite treatment, he remained ill. His pain increased and “he developed additional symptoms including nausea, lethargy, decreased appetite, constipation, decreased size and force of the urinary stream, and a 5–7 kg weight loss,” writes Hansen.

Imaging and lab tests were negative and the man was discharged. However, one week later, he was re-admitted to the hospital because “his general practitioner did not find it reasonable that his anxiety could explain his current symptoms,” says Hansen.

The man lived in an area endemic for Lyme disease. Although he did not recall a recent tick bite, he had been bitten previously, so serologic tests for Lyme disease were performed. Because his titers of B. burgdorferi IgG were so high and he had a history of tick bites and a rash, a lumbar puncture was ordered. Results were positive.

The 62-year-old man was diagnosed with Lyme disease. His symptoms, except for fatigue, resolved after a 3-week course of IV ceftriaxone. “His weight is now normalized and he has no problems with constipation,” explains Hansen. “The abdominal pain is almost gone. His main problem is fatigue but this is gradually improving.”

The authors point out that atypical clinical presentations of Lyme disease can occur, including gastrointestinal manifestations because of autonomous dysfunction, as was seen in this case.

Related Articles:

What happens to the brain during acute Lyme neuroborreliosis?

At least 50% of patients with Lyme neuroborreliosis remain ill years after treatment

When it looks like a brain tumor but it is Lyme disease

References:
  1. Hansen BA, Finjord T, Bruserud O. Autonomous dysfunction in Lyme neuroborreliosis. A case report. Clin Case Rep. 2018;6(5):901-903.

Category:

Lyme, research

10 Years of Headaches, Vertigo, and Other Pains Dismissed as “Depression”

https://www.lymedisease.org/negraconlyme-rhisa-perera/

10 years of headaches, vertigo and other pains dismissed as “depression”

rhisa perera

By Rhisa Perera

I was born in Brooklyn in 1990, to a Puerto Rican mom and an Irish and Spanish dad. I was raised in Staten Island. In 2007, my senior year of high school, I started getting GI issues that lasted for about a year.

In 2009, after a few weeks in Puerto Rico, I came back to New York City and one day I got super dizzy, with a pounding headache. That headache literally did not stop for 10 years.

I went to my primary doctor, multiple ENTs, multiple neurologists, physical therapy, had many tests in the hospital. No answers. They gave me different antidepressants—for a decade. When my symptoms didn’t go away, they increased the dose or changed the medication. If you are familiar with those drugs, you know changing them takes a while to kick in, which is not fun.

In March of 2019, I woke up in the morning to go to work. My neck felt stiff as a board and I could not move my head from side to side. It felt as if there was a metal rod from the base of my skull to my pelvis.

“Your labs are normal”

I made it to work but was in such bad shape that my supervisor called an ambulance. The hospital ran the usual blood tests and then told me: “Your labs are normal, you’re most likely in pain because you’re depressed.”

I was never examined, never asked any questions, nothing. That is basically how I’ve been treated by every medical professional I’ve ever seen. I have a drawer full of medications I’ve been prescribed over the last decade.

In July, my headaches and vertigo came back full blown. At this point, I was in between jobs, so I was also in between insurance coverage. So, I just started doubling up on my medication. I had to find some relief and be a normal functioning human being for my wedding that was coming up in August.

It must have worked. I enjoyed most of my time in Puerto Rico and my wedding, except for the fatigue that would kill me at night.

By the end of August, I was back in the states and walking down the street in NYC. Out of nowhere, I felt like I’d been hit by a truck. By the next day, I was feverish, shaking, having cold sweats and could barely lift my head. My aunt took me to the ER and my temperature was 103. They diagnosed me with pneumonia and kept me there overnight on an IV and oral medication.

What about Lyme disease?

Because I was still having headaches, in September, I saw a new doctor. When I described my symptoms to her, she asked, “Have you been tested for Lyme disease?” I responded, “The bug thing?” I knew nothing about it. She said she thought I had it and ordered blood work.

A couple days later I got a message from the doctor: “Your labs are normal, but you did test positive for Lyme disease. That most likely explains your headaches and muscle/joint pain. I am sending in doxycycline to your pharmacy. Take it for two weeks and then I will see you for a follow up.”

I took the antibiotics as instructed. When I was almost done with the pills, my vertigo was so bad I couldn’t walk straight. I had absolutely no idea what was going on. I went back to the doctor, who wanted me to see a neurologist because all of a sudden, I was cured of Lyme and the symptoms had to be something else.

The neurologist saw me for a few minutes and swore I was HIV positive. Such disrespect! I walked out and saw another neurologist who didn’t help either.

I went home, feeling defeated. Then, remembering that I was part of a Facebook support group for migraine sufferers, it popped into my head that there must be Lyme disease support groups, as well. That realization turned me in a new direction! I found a group and started learning as much as I could.

What I discovered about Lyme disease

I found out how Lyme is not believed to be chronic by the majority of physicians and that many believe Lyme doctors are quacks. They believe Lyme is hard to get and easy to treat. (Half the time when I tell a doctor I have Lyme disease, they say I don’t or ask if I was treated. Like sure, that two-week antibiotic cycle killed years of bacteria that took over my muscles, joints, brain, and gut.)

Then, after watching the Lyme documentary Under Our Skin, I started looking for a Lyme-literate medical doctor.

When I was finally evaluated by someone who knew what to look for, I found out I had Borrelia (Lyme), Babesia, Bartonella, Rocky Mountain spotted fever, mycoplasma, Ehrlichia, high levels of candida in my gut, Epstein-Barr, and schistosomiasis (parasitic flatworms).

Currently I am only detoxing and treating holistically and with diet, as my body cannot tolerate antibiotics at this point. I’m learning what these bacteria crave and trying to avoid those things.

It’s tough and I go through periods where I am super angry that it’s taken this long to get some relief. It’s a weird life to live but I’m doing it.

Rhisa Perera writes NegraConLyme, from which this blog is adapted.

____________________

**Comment**

How many more have to go through this misery before ‘authorities’ are willing to listen and adjust their thinking?

 

Category:

Activism, Lyme

Tick-Borne Disease Working Group Meeting Sept 15 & 22. Submit Comments by Sept. 4

https://www.lymedisease.org/tbdwg-sept-4-deadline/

TBD Working Group meets Sept. 15 & 22; submit comments by Sept. 4

Tcvik-borne disease working group

The federal Tick-borne Disease Working Group will meet online on two non-consecutive days, September 15 and 22, from 9 a.m. to 2:30 pm, Eastern Time.

The TBDWG will review the draft 2020 Report to Congress, and review and approve graphics and images for the report.

Public comment may be provided verbally or in writing. Thirty minutes has been set aside for verbal comments on September 15.

Persons who wish to provide verbal or written comments should review directions at the Tick-Borne Disease Working Group website.

Written comments or requests to deliver verbal comments must be submitted by midnight, Eastern Time, Friday, Sept. 4.

 

Category:

Activism, Lyme

Can We Cure Lyme Disease….or What?

https://www.lymedisease.org/cure-for-lyme-disease-or-what/

By Dorothy Kupcha Leland
27 AUG 2020

TOUCHED BY LYME: Can we cure Lyme disease…or what?

is there a cure for Lyme disease

The following question from somebody named Tom showed up in my inbox today:

Do you know of a cure for Lyme disease or are we just throwing money at it year after year?

That was the whole message. I know nothing about Tom’s circumstances, but he asks a fair question and I’ll answer it as best I can.

If Tom’s experience is anything like that of 12,000+ Lyme patients enrolled in the MyLymeData project, he’s been sick for years. He probably had to go through four or more doctors before even being diagnosed with Lyme disease. And by that time, he’d probably run through whatever treatment options his insurance might have covered—and is now deep into “paying out-of-pocket” territory.

He likely continues to suffer from such symptoms as severe pain, crushing fatigue, sleep impairment and cognitive problems. (He could have a host of other symptoms as well.)

And from the frustration evident in his question, I assume that whatever treatment he has been paying for has not helped him.

Unfortunately, many people find themselves in the same boat. And there’s no magic-bullet answer.

Here’s my take on it

Lyme disease is a complex condition, with many confounding factors. Yet often, the medical establishment presents it like this: a perfectly healthy person gets bitten by a tick that miraculously carries only one infection—Lyme disease. Within a few days, the person develops a tell-tale rash and flu-like symptoms. The doctor prescribes a short course of antibiotics. Bingo! The person is restored to perfect health. Case closed.

And there are, in fact, some individuals who seem to fall into that “ideal” category. But there are tens of thousands of people every year who do not. And those people, whose symptoms may drag on for months, and years, and even decades, are kicked to the curb by the medical establishment. They are the ones crying into the abyss, “Is there a cure out there—somewhere?”

Some people with persistent Lyme eventually find their way to what we call “Lyme-literate” doctors. And, with longer treatment, many of those folks are restored to health. And yet, there are some—like Tom, I presume—who are still sick even after years of treatment.

Questions to explore

Tom, I feel for you. And I wish I had a magical elixir to offer. Instead, I have some questions for you to think about.

Have you been evaluated for co-infections? These are other nasty microbes the tick can transmit along with Lyme disease. Untreated co-infections can throw a wrench into the healing process.

Have you investigated the question of toxic mold exposure? It turns out mold can cause a heap of problems for people with Lyme disease.

Those are only two factors that can hinder your ability to recover from Lyme. I recommend the following books that can help you explore these and other areas.

Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, by Dr. Richard Horowitz

TOXIC: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness, by Dr. Neil Nathan

Have you joined any Lyme patient support groups? Hearing from others going through similar challenges can be immensely helpful. You can learn about doctors, treatments, detoxification methods, what supplements others have found helpful—and gain much-needed moral support.

Click here to join LymeDisease.org’s network of online support groups.

Emerging treatments

Disulfiram is an “old” drug that has recently been repurposed as a Lyme disease treatment. It reportedly helps some people a great deal—and others, not so much. It is not without risks, so if you’re considering it, I suggest you do your homework. The following article offers a good introduction: What is disulfiram and why is it sparking excitement in the Lyme community?

Many patients tell me that medical cannabisrelieves a lot of their Lyme symptoms—including pain and insomnia. Again, you need to do your homework. Cannabis comes in different forms and strengths, and you need to find the right combination for you. And, alas, it’s not legal in every state.

Tom, I hope this article gives you some ideas about new ways to pursue healing.

Furthermore, I encourage anyone who has been diagnosed with Lyme disease to enroll in MyLymeData—whether you are currently sick or well. This kind of information about Lyme disease has never before been collected on such a large scale. Your experiences can help pave the way for a cure—for Tom, and a whole lot of other people.

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

___________________

**Comment**

Great post and great question – one I purposely did not investigate for a long time.  I just couldn’t handle the potential answer!  I had to bury my head in the sand and believe I was going to get better.

Besides the resources mentioned within the article, I highly, highly recommend Dr. Burrascano’s video where he not only gives the history of Lyme, but goes into detail on treatment nuances that helped not only him, as he was infected, but many of his patients as well.

The video is here:  https://madisonarealymesupportgroup.com/2018/12/28/the-history-of-lyme-disease-dr-burrascano/

I highlight the video here:  https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/

Please talk about these issues with your practitioner and the two of you need to hunt to ground all of your rabbit-holes that are thwarting your progress – and there can be many.  At the ILADS convention a few years ago, MCAS was all the rage as Lyme doctors were finding a large portion of their patients struggled with it.

Leland’s suggestion of finding a local support group is also helpful.  I’ve learned more from patients than I have from doctors as we share what we’ve learned, what’s helped, and what hasn’t.  Of course, these things vary from patient to patient and shouldn’t solely be used for decisions – but will help you whittle things down.  I often have a “show and tell” day where I ask everyone to throw what has worked into a box and bring it to group.  This way we can visually see and touch many different products and in some cases even try things before we have to spend money in purchases (like with Biomats, portable saunas, etc).  I really enjoy these meetings as there’s always so much to learn and products continually change.

 

Category:

Lyme, Treatment