Archive for the ‘Lyme’ Category

Man Shares His Story About Dealing With Lyme Disease

https://www.wsaz.com/content/news/Man-shares-his-story-about-dealing-with-Lyme-Disease-510295481.html  News Story in Link

Man shares his story about dealing with Lyme disease

Man makes it his mission to raise awareness about Lyme Disease
By Taylor Eaton
Posted: May 22, 2019  

ELLIOTT COUNTY, Ky. (WSAZ) — In 2006, Patrick White says his life really started changing.

May is Lyme Disease Awareness Month, and a man from Kentucky shares his experience with the disease.

“The first sign that something wasn’t right was 2006,” said White. “I remember the date because it was my wife’s birthday. I slept all day on her birthday, which was totally odd. That was the first sign. There were other things. Bone pain, odd bone pain. I’m 44, and this started when I was in my early 30s. It was odd to have that pain. I always worked in construction, was in the Marine Corps but never experienced this type of pain.”

White developed a lot of different health issues.

“The mood swings. Rage was the worst part of it,” White said. “I’d get so angry over some of the smallest things. From there, it started to kind of spiral. Depression started. I got really depressed.”

He was left in the dark for years though, not knowing what was causing all of his problems. It was one misdiagnosis after another for him because his symptoms mimicked a lot of other illnesses.

“I had no idea what was going on,” White said. “I just knew I was in so much pain. It got to the point when I would walk, it felt like my bones were like glass and they were going to snap and break. It was through my whole body.”

It wasn’t until around 2014 when one of his doctors brought up the possibility of Lyme disease. White was tested and it came back positive.

“I didn’t know anything about Lyme at that time,” White said. “It wasn’t even a thought in our head that could happen.”

Lyme disease is a bacterial infection that is transmitted through the bite of an infected deer tick. Typically, a rash will develop around the site of the bite, called a bulls-eye rash. Aside from that symptom, there are no other symptoms specific to Lyme disease.

However, White says he didn’t develop a rash.

Other common symptoms include fever, chills, fatigue, and body aches.

“I never saw the bulls-eye rash,” White said. “I can’t remember getting flu-like symptoms. I can’t ever remember getting sick like that.”

Many times, Lyme disease isn’t diagnosed immediately because people don’t realize they have been bitten. If it’s not diagnosed immediately, the bacteria can spread throughout the body and cause a number of different health issues.

However, many of those symptoms can mimic other diseases and infections, which is why Lyme disease can be difficult to diagnose.

White says after his diagnosis, he finally felt he had some answers. He still doesn’t know exactly when he was bitten.

Typically, Lyme disease is treated with antibiotics if it is caught early.

However, White received a late diagnosis and is still feeling the effects of it.

“I still have seizures,” White said. “I still have memory loss. But, I am able to get out walking now and can help around the house.”

He is undergoing a treatment now called immunotherapy. He credits the treatment for giving him a big part of his life back.

“Where I am at now, I am extremely happy,” White said. “It feels good. I feel like I have my life back.”

White has now turned to art and support groups to help him on his journey forward. He is making it his mission to raise awareness about Lyme disease.

“Since I have started getting better, I really push this awareness because I don’t want to see anyone go through this,” White said. “I am petrified of ticks now. I am constantly on the lookout when we go in the woods. I know that little thing that is the size of a poppy seed will change and destroy your life. You have to be diligent with your body checks. You have to check yourself constantly.”

May is Lyme Disease Awareness Month.

 

Category:

Activism, Lyme

Neuronal Loss or Dysfunction in Patients With Early Lyme

https://www.ncbi.nlm.nih.gov/pubmed/31076877/

2019 May 10. doi: 10.1007/s00415-019-09359-0. [Epub ahead of print]

Neuronal loss or dysfunction in patients with early Lyme neuroborreliosis: a proton magnetic resonance spectroscopy study of the brain.

Garkowski A1, Kubas B2, Hładuński M2, Zajkowska J3, Zajkowska O4, Jurgilewicz D2, Zawadzki R5, Garkowska E5, Pancewicz S3, Łebkowska U5.

Abstract

BACKGROUND:

We hypothesized that since Borrelia burgdorferi causes systemic inflammation and infects the brain, it may lead to alterations in cerebral metabolism, as measured by 1H-magnetic resonance spectroscopy (1H-MRS). The purpose of our study was to determine whether 1H-MRS could detect brain metabolite alterations in patients with early Lyme neuroborreliosis (LNB) in normal-appearing brain tissue on the conventional magnetic resonance imaging (MRI).

METHODS:

Twenty-six patients diagnosed with early LNB and twenty-six healthy volunteers as a control group have been involved in the study. All of them underwent routine MRI protocol using 3.0-T MRI scanner. 1H-MRS examinations were performed with repetition time (TR) = 2000 ms, and echo time (TE) = 135 ms. Single voxels were positioned in the anterior and posterior parts of the right and left frontal lobes.

RESULTS:

We found a statistically significant decrease of the N-acetylaspartate/creatine ratio within the anterior part of the right and left frontal lobes (p ≤ 0.001 and p = 0.001 respectively) and in the posterior part of the right and left frontal lobes (p ≤ 0.001 and 0.031) in the patients with LNB.

CONCLUSION:

A significant reduction in NAA/Cr ratio in comparison with the controls suggests the presence of diffuse neuronal loss in patients with early LNB.

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For more:  https://madisonarealymesupportgroup.com/2019/01/30/characterization-of-brain-dysfunction-induced-by-bacterial-lipopeptides-that-alter-neuronal-activity-network-in-rodent-brains/

https://madisonarealymesupportgroup.com/2018/08/20/tick-borne-diseases-causing-autonomic-dysfunction/

https://madisonarealymesupportgroup.com/2019/05/21/chronic-inflammatory-demyelinating-polyneuropathy-as-an-autoimmune-disease-but-associated-with-bartonella-mycoplasma-viruses/

Let’s start doing these studies on chronically infected patients.

 

Category:

Inflammation, Lyme, research, Testing

Lawmakers Create Bills to Bite Back Against Lyme Disease – Wisconsin

https://fox11online.com/news/local/lawmakers-create-bills-to-bite-back-against-lyme-disease  News Video Here

by Pafoua Yang, FOX 11 News

(WLUK) — Memorial Day is approaching and some will be spending time in the great outdoors.

As the weather warms, the risk of catching Lyme disease increases.

“Lyme disease is an infection spread by tick, caused by bacterium,” explained Rebecca Osborn with the state Department of Health Services.

Osborn said Lyme disease shows no signs of slowing.

“We do have data that suggest that Lyme disease has increased in the last several decades,” she said.

Last year, Wisconsin had more than 3,000 Lyme disease cases. The state health department said the average number of reported cases has more than doubled over the past 10 years.

“If you get a tick bite, we recommend being aware of any symptoms that may be developed within 30 days of that tick bite,” said Osborn.

She added that symptoms include fevers, joint pain, headaches and bulls-eye rashes.

To prevent the bug bite, Osborn said, “Avoid tick habitat, they tend to live in brushy, grassy, wooded areas, if you can stay on trails or try to stay away from tick habitats.”

And if you are in the wood, health experts say you should check your body for tick, take a shower, and dry your clothes on high heat for 10 minutes.

Wisconsin legislators are also bringing awareness to this growing problem by releasing five bills.

Bill draft numbers and an overview of the five bills is listed below. All five bills were circulated for co-sponsorship in the Legislature Thursday, and are circulating until Tuesday, June 4.

  1. LRBs 1758 and 3360 – Requires the DNR to post signs to raise awareness of Lyme disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after visits to be posted in a common area, such as the park entrance, a trailhead or in a campground, in all State Parks, Forests, Recreational Areas, and Trails
  2. LRBs 1759 and 3359 – Requires the DNR to sell bug spray with DEET, which can help to repel ticks, in all State Parks and Forests when their Park or Forest Office or other location in the Park or Forest, such as a concession stand, is open
  3. LRBs 2738 and 3358 – Requires the DNR to post information in certain Parks brochures to raise awareness of Lyme disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after visiting a State Park, and requires the DNR to complete an annual awareness campaign in May of each year, which is Lyme Disease Awareness Month, on digital and print platforms to raise awareness of Lyme disease, inform on how to prevent tick bites, and encourage visitors to check for ticks after spending time outdoors
  4. LRBs 1658 and 3355 – Provides an Epidemiologist Advanced position at DHS’s Division of Communicable Disease with the position dedicated to vector-borne diseases spread by mosquitoes, ticks, and other insects with a specific focus on Lyme disease, including raising awareness about and creating informational materials about Lyme Disease and other vector borne diseases
  5. LRBs 1652 and 3362 – Establishes a sixteen-member Tick-Borne Disease Study Committee to create a report for the legislature on consensus-based recommendations for policy changes on awareness, prevention, surveillance, diagnosis, reporting, and treatment of Lyme disease

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Time to Bite Back Against Lyme Disease, 05-23-19

After speaking with a legislative aid about the polarization within the medical community, I warned him that bill #5 could have potential problems depending upon who is on the 16 member group.  It is always concerning when diagnosis and treatment is discussed as the medical community is completely divided on both aspects.

Now is the time to call and write in your experiences, Wisconsinites. Let them know the CDC is fraught with fraud and corruption and is not telling the truth about a disease(s) that can kill you.  https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24614562?

The bills were released by Senator Cowles and Miller, along with representatives Mursau, and Milroy.  They’ve since obtained more co-sponsors.  Contact your reps and senators and let them know how much this impacts you and your families.  

For more:  https://madisonarealymesupportgroup.com/2018/05/24/new-berlin-mom-given-life-altering-lyme-disease-diagnoses-after-pregnancy/

There is much to show Lyme/MSIDS is congenitally and sexually transmitted, among other modes:  https://madisonarealymesupportgroup.com/2018/06/19/33-years-of-documentation-of-maternal-child-transmission-of-lyme-disease-and-congenital-lyme-borreliosis-a-review/

https://madisonarealymesupportgroup.com/2019/05/24/microbiology-professor-im-convinced-lyme-disease-is-transmittable-from-person-to-person/

https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/

https://madisonarealymesupportgroup.com/2018/06/13/half-of-powassan-cases-from-wisconsin-and-minnesota/

https://madisonarealymesupportgroup.com/2018/07/10/first-rmsf-death-in-wisconsin/

 

Category:

Activism, Lyme, Prevention

Not All Headaches Are Alike: What’s Causing Your’s?

https://globallymealliance.org/lyme-disease-symptoms-headaches/

Headaches are a common symptom of tick-borne illness. Now that I’m in remission, I rarely get headaches. When I do, I’ve become adept at recognizing why I have them. Knowing the nuances of my headaches helps me determine whether my pain is Lymeor babesia related—or from something else entirely—and how to treat it. In short, I now know my own head as well as I know my own body.

I trained myself to recognize gradations and causes of headaches in part as a defense against people who thought they knew my head and body better than I did. In my worst days of battling tick-borne diseases, when I would complain to an acquaintance of a smashing migraine, they might say “It could be the weather.”

I wanted to scream. A headache that severe does not result from a shift in barometric pressure. Sometimes on muggy days with impending rain, I felt fine. My head was clear. I had no brain fog or pain. Other days, it would be beautiful and sunny outside, and I felt my head might explode. Healthy people were outside playing, encouraging me to enjoy the weather—“it’ll be good for you!”—when all I really needed was to take some migraine medication and sleep.

My headaches were caused by tick-borne illnesses, not by the weather. They also weren’t stress-related (though stress could aggravate them), or caffeine withdrawal. If you are bedridden with Lyme, wishing you could just take your head off and put it on the nightstand because it hurts so much, I am here to remind you that your pain is likely caused by a bug in your brain, not by any of these more typical causes.

It’s important to talk to your Lyme Literate Medical Doctor (LLMD) and perhaps get a scan of your brain to make sure nothing else—outside of the scope of tick-borne illness—is going on. It also helps to recognize different headache symptoms, so you can be as specific as possible when talking with your doctor. In my case, headaches related to Lyme took over my whole skull with a throbbing pressure, sometimes making me feel like my brain was getting too big for my skull. Pain caused by babesia was different; that tended to be a migraine, focused on the left side of my head. It was more searing, like someone sawing into the left side of my skull. Babesia headaches caused nausea and light sensitivity, while Lyme headaches caused a more generalized, tolerable pain.

Your own headache symptoms might be different. You might be suffering from co-infections I did not have, and suffer relapsing fevers that can cause their own species of headaches. Do you tend to get migraines for a few days in a row? Are your headaches local or generalized? Do they come on during Herxheimer reactions, or when you are pulsing antibiotics? If you’re female, are your headaches specific to a certain time of the month? Figuring out these nuances can help your LLMD treat you. I recommend keeping a written log, and marking any external factors (like stress or certain foods) that you think might be worsening your symptoms.

These days when I do get a migraine, it’s usually because I’ve pushed myself way too hard neurologically or physically. If they persist, I know my babesia is flaring. But the headaches I usually get now are the “normal” headaches healthy people thought I was suffering from years ago.

I’ve learned to differentiate between these headaches, too. Weather-related headaches mean slight pressure at the base of my skull, across both sides of my head. These I can’t do anything about until the storm passes, but the pain is minimal. Stress-related headaches cause inflammation only on the left side of the base of my skull, creating a knot that I can actually feel with my hand. It helps to rub the knot or get cranial-sacral therapy and sleep. Hormonal headaches feel like a buzzing across my temples, and are relieved with over-the-counter painkillers. Dehydration headaches are a tightening on the top of my head, signaling that I need to drink electrolyte-enhanced water.

All of these headaches are bearable. Getting these typical, that is, non tick-borne disease related headaches reminds me how very, very different they are than the agonizing headaches I suffered years ago. Learn the nuances of your own headaches, talk to your LLMD about them, and don’t let anyone but your trusted medical providers tell you what the cause of pain is in your own body.

jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com. 

 

 

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**Comment**

This article takes me back to when I wondered if there would EVER be a day without an excruciating, all encompassing headache. Thankfully, these headaches are a thing of the past due to appropriate treatment. One of the most effective drugs for me was minocycline due to its ability to cross the blood/brain barrier:  https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/

Appropriate Babesia treatment was also crucial:  https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

For me initially, the headaches were in the meninges (the layer encompassing the entire brain). The inflammation and pain were beyond anything I’d ever experienced. Then they became occipital (base of where head meets neck).  Since I met numerous patients that had a Lyme diagnosis as well as Chiari, I had a MRI to rule that out:  https://madisonarealymesupportgroup.com/2016/04/02/chiari/  The MRI for me was normal – showing nothing that should cause the type of pain I was experiencing.

At this point, I tried MSM for pain/inflammation with good success & have been taking daily since:  https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/

I also added in systemic enzymes for the same reasons, although both MSM & enzymes do 1,000 beneficial things:  https://madisonarealymesupportgroup.com/2016/04/22/systemic-enzymes/

https://madisonarealymesupportgroup.com/2018/03/05/how-proteolytic-enzymes-may-help-lyme-msids/

https://madisonarealymesupportgroup.com/2018/01/03/the-invisible-universe-of-the-human-microbiome-msm/

I recommend you discuss these options with your practitioner IF you’ve had sufficient antimicrobial treatment but are left with a lot of pain. These substances did not work for me while in treatment for active infection. It wasn’t until after stopping treatment that they worked for me; however, you may be different.

I do feel one mistake people make is quitting treatment too soon.  ILADS recommends being symptom-free for 2-3 months before stopping any treatment.  As you see from the article on Babesia, Dr. Horowitz recommends 9 months to a year of steady 3 weeks on, one week off treatment. Many quit this too soon.  It’s important to overlap treatment as well with numerous things hitting all the various angles.  It’s also important to switch meds when you reach plateaus.  My husband and I were treated with 4.5 years and have relapsed twice requiring 2-3 month stints of treatment. Make sure you see your practitioner if symptoms return.  Read the following articles for examples to discuss with your practitioner:

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

https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2016/02/07/mycoplasma-treatment/

https://madisonarealymesupportgroup.com/2016/03/28/combating-viruses/

https://madisonarealymesupportgroup.com/2017/10/03/removing-parasites-to-fix-lyme-chronic-illnesses-dr-jay-davidson/

Category:

Activism, Babesia, Inflammation, Lyme, Treatment

Mixed Borrelia Burgdorferi & Helicobacter Pylori Biofilms in Morgellons Disease Dermatological Specimens

https://www.mdpi.com/2227-9032/7/2/70

Mixed Borrelia burgdorferi and Helicobacter pylori Biofilms in Morgellons Disease Dermatological Specimens†

Marianne J. Middelveen 1, Katherine R. Filush 2, Cheryl Bandoski 2, Rumanah S. Kasliwala 2, Anthony Melillo 2, Raphael B. Stricker 3,* and Eva Sapi 2
Healthcare 2019, 7(2), 70; https://doi.org/10.3390/healthcare7020070
Received: 15 March 2019 / Revised: 17 April 2019 / Accepted: 14 May 2019 / Published: 17 May 2019
(This article belongs to the Special Issue Lyme Disease and Related Tickborne Infections)
Full-Text
PDF [3717 KB, uploaded 17 May 2019]

Abstract

Background: Morgellons disease (MD) is a dermopathy that is associated with tick-borne illness. It is characterized by spontaneously developing skin lesions containing embedded or projecting filaments, and patients may also experience symptoms resembling those of Lyme disease (LD) including musculoskeletal, neurological and cardiovascular manifestations. Various species of Borrelia and co-infecting pathogens have been detected in body fluids and tissue specimens from MD patients. We sought to investigate the coexistence of Borrelia burgdorferi(Bb) and Helicobacter pylori(Hp) in skin specimens from MD subjects, and to characterize their association with mixed amyloid biofilm development.

Methods: Testing for Bb and Hp was performed on dermatological specimens from 14 MD patients using tissue culture, immunohistochemical (IHC) staining, polymerase chain reaction (PCR) testing, fluorescent in situ hybridization (FISH) and confocal microscopy. Markers for amyloid and biofilm formation were investigated using histochemical and IHC staining.
Results: Bb and Hp were detected in dermatological tissue taken from MD lesions. Bb and Hp tended to co-localize in foci within the epithelial tissue. Skin sections exhibiting foci of co-infecting Bb and Hp contained amyloid markers including β-amyloid protein, thioflavin and phosphorylated tau. The biofilm marker alginate was also found in the sections.
Conclusions: Mixed Bb and Hp biofilms containing β-amyloid and phosphorylated tau may play a role in the evolution of MD. View Full-Text
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Category:

Biofilm, Lyme, Morgellons, research