Archive for the ‘Lyme’ Category

Lyme Disease & The Effects of Vitamin D

https://www.globallymealliance.org/blog/lyme-and-vitamin-d

Lyme Disease and The Effects of Vitamin D

by Jennifer Crystal on August 16, 2022

<img src="https://www.globallymealliance.org/hubfs/Gala%20PR%20Image%20%2829%29.jpg&quot; alt="Lyme Disease and The Effects of Vitamin D“>
Lyme disease can deplete your vitamin D levels–which ironically, are essential in your recovery. Read about the positive effects of Vitamin D and techniques to increase it.

While kayaking recently, a friend noticed that I was getting a lot of sun on my face and asked if I wanted a hat. “No thanks,” I replied. “I’m wearing sunscreen, and I want to soak up as much vitamin D as I can.”

There were summers during my convalescence from tick-borne illness when I couldn’t be in the sun at all, due to the phototoxicity of the medication I was on. Doxycycline, the most common antibiotic used to treat Lyme disease, can cause you to be very sensitive to the sun. When I was on doxycycline or other antibiotics in the same family, my face would feel like it was on fire if I was exposed for more than five minutes. I spent summers bundled in protective shirts, under hats and umbrellas in the shade.

A former camp counselor who spent every day in the sun before I got sick, summers in the shade were not my style. Now that I am in remission, I want to (carefully) get as much sun as possible, making up for lost time and summer glow. But it’s not just sun-kissed cheeks that I’m after. I literally am trying to soak up vitamin D, provided by the sun, because I know that Lyme disease can cause a deficiency in that vitamin.

The Lyme disease bacteria, Borrelia burgdorferi, directly reduces vitamin D receptor expression in immune cells. Low vitamin D can be involved in immune dysfunction and autoimmunity, so Lyme patients who are already struggling with compromised immune systems may be further compromised by a vitamin deficiency. As Clinical Nutritionist Lindsay Christensen, MS, CNS, LDN, CKNS explains in her blog post “Lyme Disease Nutrition Tips for Optimal Immune Function,” Vitamin D3 is “essential for healthy immune function. Within the innate immune system, vitamin D3 supports the production of cathelicidin, an antimicrobial peptide (protein) that protects the body against bacteria, viruses, and fungi. Vitamin D3 also regulates dendritic cells, which are immune cells that ‘bridge the gap’ between the innate and adaptive immune system branches and may help defend the body against Borrelia.”

In other words, the very vitamin that can be depleted by Lyme disease is also necessary to help fight it.

So what should Lyme patients do? First, make sure your doctor is monitoring your vitamin D levels. A blood test can tell you whether you have a deficiency. If you do, sunshine, and certain foods like egg yolks and fatty cold-water fish, can help you get vitamin D. You also may need to supplement with vitamin D3 to maintain what Christensen describes as “an optimal vitamin D3 level of 40-60 ng/mL, which is higher than the 30-60 ng/mL range suggested by most labs.”

Testing vitamin D levels can also help a Lyme Literate Medical Doctor (LLMD) determine if you have Lyme disease, if you have symptoms but have not yet been diagnosed. Though not a definitive diagnostic marker (low vitamin D is also seen in other conditions like multiple sclerosis), low vitamin D can be a tip-off that Lyme disease could be the cause of your symptoms.

Vitamin D is not the only vitamin that can be affected by Lyme disease, or that you may need more of to help fight tick-borne illness. Many Lyme patients have a vitamin B12 deficiency. Others have anemia or low ferretin. It’s important that your doctor do regular blood work to check for any nutritional deficiencies, and then you can determine together how to best supplement them, to support your overall healing. In the meanwhile, as long as you’re not on a phototoxic drug, sticking your face in the sun can’t hurt!

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. *Make sure to protect your skin when in the sun.
Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

_____________________

**Comment**

This is a perfect example of Lyme/MSIDS patients needing to be their own advocates and learning about their own bodies and what they require for optimal health.  It’s a road that never ends so buckle up and enjoy it.

There are times in the journey when this revelation can be overwhelming.  Accept it for the time being and don’t allow it to bog you down.  When you are capable of reading, comprehending, remembering, and searching yourself – do it – you won’t regret learning and improving.  There are many stages to the journey.  You can’t learn it all at once – your head would explode.  So, bit by bit, piece by piece – accrue your knowledge and use it for yourself and to help others.  This is, BTW, the best way to learn.

For more on vitamin D:

Category:

Lyme, Supplements

Lyme Testing, Blood work, and Diagnoses

https://www.globallymealliance.org/blog/lymewarrior

Dear Lyme Warrior…Help! Lyme Diagnoses, Testing, and Blood work.

by Jennifer Crystal on August 12, 2022

<img src="https://www.globallymealliance.org/hubfs/blog_Lyme-Warrior-Q-A_Jennifer-Crystal_3-Apr-27-2021-09-10-21-42-PM%20%282%29.webp&quot; alt="Dear Lyme Warrior…Help! Lyme Diagnoses, Testing, and Bloodwork.“>
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.
How were you finally diagnosed with Lyme disease?

People ask me this question all the time, especially when their own lab work comes back negative or equivocal, but they have symptoms of Lyme disease or remember a tick bite. Here’s an important fact that not everyone—including some doctors—knows: per the CDC, Lyme disease is a clinical diagnosis. That means that it is up to your doctor to determine, based on your symptoms and on factors such as whether you had a tick bite or whether you spent time in an area where Lyme is common, whether you have Lyme disease or not. That clinical diagnosis can be supported by lab tests, but tests alone cannot definitively say whether you do or don’t have Lyme disease.

That last part bears repeating: tests alone cannot definitively say whether you do or don’t have Lyme disease. This is because Lyme tests only look for antibodies against the bacteria that causes Lyme disease, not for the bacteria itself. Testing for Lyme disease is faulty for a number of reasons, including the fact that standard CDC tests only looks for a very narrow set of bands of antibodies—so narrow, in fact, that those tests were not actually designed for diagnostic purposes, even though they are used as such. You can use other labs that look for a wider range of bands (for more information, see GLA’s Lyme Disease Testing page), which can give your doctor a better read than standard tests. At the end of the day, though, the diagnosis is still up to your doctor.

I was clinically diagnosed by a Lyme Literate Medical Doctor (LLMD), and I was lucky enough to also have a CDC-positive lab test. I also tested positive for the co-infections babesiosis and ehrlichiosis, and my doctor suspects that I also had Bartonella. If you had a standard Lyme test come back negative but have reason to believe you do in fact have Lyme disease, see a LLMD. They will make a clinical assessment, likely do the more specialized tests, and probably do tests of certain biomarkers that may help them figure out if you have Lyme disease.

Can tests show that your Lyme disease is gone or in remission?

Unfortunately, no. If you’ve had Lyme disease, your long-term antibodies (IgG) will likely continue to show up whether your infection is active or not. Antibodies of acute Lyme infection (IgM) could mean your old infection is still active, or they could mean you have a new infection. As a result, most doctors do not use tests to determine whether your Lyme infection is cleared or dormant; they go by clinical symptoms. Other biomarker tests, like inflammatory markers and immune markers, can help them determine how active your infection is, but currently there is no direct test to determine where your Lyme infection stands.

Is it important to get other blood work done while you’re being treated for tick-borne illness?

Absolutely. Even though tests can’t reliably tell you whether you have Lyme disease or how active the infection is, it’s really important that your doctor does regular blood work ups to determine how your tick-borne infections, and your treatment for them, are impacting your body. You may get depleted of certain nutrients, your inflammatory markers could be high, or you might show anemia. I get a complete blood count (CBC) and comprehensive metabolic panel (CMP) every two months; when I was acutely ill and on intravenous antibiotics, I had my blood drawn every week. My doctor also does specific tests for markers that have been off for me in the past (for example, my ferritin levels were recently low, so I needed to take an iron supplement for a little while).

It’s also important to check for other health issues that may be going on in addition to tick-borne illness. When we’re in the midst of battle with these illnesses, it can be easy to forget the bigger picture, but you need to keep up with other regular health exams, too. A few years ago, I had a mammogram that showed a lump that required surgery. Thankfully, everything was benign, but if I’d skipped the mammogram to focus only on tick-borne illness, I might not have caught the lump in time. Make sure to keep up not just with regular blood work but also with annual health appointments, like the eye doctor and the dentist, as well.

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. 
Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

__________________

For more:

Category:

Lyme, Testing, Uncategorized

Tick Bites Warning As Woman Waits 29 Years For Lyme Disease Diagnosis

https://news.stv.tv/west-central/tick-bites-warning-after-pauline-bowie-waited-29-years-for-lyme-disease-diagnosis  Article and video here

Tick bites warning as woman waits 29 years for Lyme disease diagnosis

University experts working to understand more about ticks found in Scotland.
 STV News
By Susan Ripoll

A woman who waited 29 years for a Lyme disease diagnosis is warning people about the dangers of a tick bites

Pauline Bowie, from Clydebank, was bitten in 1989 and for decades experienced chronic fatigue, heart problems and joint pain. 

She was diagnosed with fibromyalgia and ME, but was still struggling with her symptoms when she heard about Lyme disease.

“I was off work, barely able to get out of bed at times and it was just a throwaway comment from my dad,” the 54-year-old said.

“He had been speaking to a cousin of mine who was getting treated for Lyme disease.”

Pauline googled the virus and finally felt “everything fell into place”.   (See link for article)

_________________

SUMMARY:

  • A ‘throwaway’ comment is quite often how “everything falls into place” for people because  government public health has failed to lead mainstream medicine to truth about this plague. Myths have continued unabated for over 40 years and show no sign of changing.
  • Similarly to this patient, nearly everyone who goes to a regular GP to get standardized testing has a negative test – further propelling the Lyme lies.
  • It wasn’t until this patient, like so many others, uses a more sensitive test – vilified by conflict riddled authorities due to their own patent ownership in testing, that she found out not only did she have Lyme, but numerous other tick-borne infections (TBIs). This is also common in Lymeland.
  • And she, like thousands, if not millions more – don’t receive true help until they see a doctor who specializes in TBIs – who are also vilified and called “quacks” by conflict riddled authorities, and who are hunted down by state medical boards and other professional medical groups and are persecuted for helping patients.
  • The patient admits she’s now in remission but has occasional flare-ups – or relapses, necessitating stints of treatment.  This concept is completely denied, ignored, and vilified by mainstream medicine.
  • She also admits she can do things now she hasn’t been able to do since she was in her 20’s, and that it’s been “life changing.”  DITTO!
  • Scientists as Glasgow University have developed a map where members of the public can upload information about where and when they found ticks, and take samples from hot spots.
  • Evidently people from all over Scotland are stating they’ve never seen ticks like they have this year and the team has found larger numbers in urban areas and gardens, and warns that they are everywhere.
  • The article then gives tick prevention ideas which can also be found here in an article that is more thorough & complete. They also recommend changing into a new set of clothes at the end of your activity which is a good idea.  (Put the others in a tightly secured bag and put in dryer on high for 15-20 min when you get home)
  • They also give a section on what to do if you are bitten.  I believe this article is better.  The article quotes the International Lyme and Associated Diseases Society (ILADS – how to handle a tick bite):

    “ILADS recommends that prophylaxis (preventive treatment) be discussed with all who have had a blacklegged tick bite. An appropriate course of antibiotics has been shown to prevent the onset of infection.

    When the decision is made to use antibiotic prophylaxis, ILADS recommends 20 days of doxycycline (provided there are no contraindications).The decision to treat a blacklegged tick bite with antibiotics often depends on where in the country the bite occurred, whether there was evidence that the tick had begun feeding, and the age of the person who was bitten.  Based on the available evidence, and provided that it is safe to do so, ILADS recommends a 20-day course of doxycycline.

  • Personally, I would treat each and every black-legged tick bite with antibiotics/antimicrobials.  The risk just isn’t worth it. Taking the “wait and see” approach is foolish considering the potential devastating outcome.

Category:

Activism, Lyme, Prevention, research, Ticks, Uncategorized

Former TV Anchor Dies After Battling Lyme Disease For Years

https://www.lymedisease.org/anchorwoman-dies-after-lyme/

Former TV anchor dies after battling Lyme disease for years

Aug. 11, 2022

Leslie Griffith, who anchored the news for San Francisco-area TV station KTVU for over 20 years, has died, reportedly after a years-long battle with Lyme disease. She was 66.

Griffith died Wednesday in Lake Chapala, Mexico, where she lived since 2016.

After leaving KTVU in 2006, the longtime journalist wrote for many news outlets, including the Huffingtom Post and the San Francisco Chronicle.

According to family members, she was bitten by a tick in Oregon in 2015, and suffered the effects of Lyme disease ever since. At this time, her immediate cause of death is unknown.

Watch KTVU’s tribute to Griffith:  https://www.ktvu.com/video/1103909

Category:

Activism, Lyme, Uncategorized

CDC Fails To Acknowledge Neuropsych Symptoms of Lyme & Other TBDs

https://www.lymedisease.org/neuropsych-symptoms-lyme-tbds/

CDC fails to acknowledge neuropsych symptoms of Lyme and other TBDs

Lyme disease and co-infections can bring on a variety of neuropsychiatric symptoms, such as pain, seizures, and cognitive impairment. Yet, patients often find that their doctors don’t understand the connection.

In a recent study, Sarah Maxwell, PhD, and co-authors compared official public health information, case reports, medical literature, and the self-reported symptoms of patients with Lyme and other tick-borne diseases. In the following article, she explains what the researchers found.

By Sarah Maxwell, PhD

Currently, the Centers for Disease Control and Prevention (CDC) does not recognize most neuropsychiatric symptoms of Lyme and other tick-borne diseases. This leaves medical providers with scant information regarding the full extent of possible symptom presentation, to the detriment of patients.

Patients would be better served by improved public health recognition and communication regarding the full spectrum of possible tick-borne disease related symptoms, some of which can be quite frightening, such as hallucinations.

In our recent lead article in Healthcare, we found that neuropsychiatric symptoms are prevalent in the medical literature and among patients’ self-reports, but are not recognized by public health officials, specifically the CDC’s: Tickborne Diseases of the United States: A Reference Manual for Health Care Providers.

In the article, we note that, “The complexity of diagnosis originates from patients presenting with non-specific and multisystem symptoms, with potential misattribution of symptoms by practitioners, regarding psychiatric and associated neurological problems.”

Our mixed-methods approach included a systematic review of the literature on psychiatric and neurological symptoms of tick-borne diseases. We then compared the medical literature to the CDC’s publication: Tickborne Diseases of the United States: A Reference Manual for Health Care Providers.

CDC only recognizes a few neuropsych symptoms

We found that out of all the neuropsychiatric symptoms reported in the medical literature for common tick-borne diseases, only a few were fully recognized by public health officials.

The table below summarizes the symptoms presented in our study. Column one lists symptoms. Column two lists the tick-borne diseases associated with those symptoms in the medical literature. The third column lists the tick-borne diseases that are associated with the symptom, if any, as recognized by the CDC. The final column shows symptoms that are reported in the literature but not recognized by the CDC.

For example, in the medical literature, the symptom, “difficulty with, or slurred speech (dysarthria),” is associated with five tick-borne diseases: Lyme disease, anaplasmosis, ehrlichiosis, Powassan virus disease (PVD), and Rocky Mountain Spotted Fever (RMSF).

However, the CDC does not recognize dysarthria as a symptom of any tick-borne disease, as noted in the fourth column.

Panic attacks and hallucinations are additional examples reported among Lyme disease patients, but also not recognized in public health guidance to physicians.

Make the comparison

Table 1. Symptom comparison from medical literature and the public health reference manual for common tick-borne diseases.

(RMSF—Rocky Mountain spotted fever; BMD—Borrelia miyamotoi diseases;  PVD—Powassan virus disease; TBRF—Tick-borne relapsing fever.)

Symptom Reported in Scientific and Medical Literature Reported by the CDC Reported in the Scientific Literature, but Not Recognized by the CDC
Headache Lyme disease, BMD, babesiosis, ehrlichiosis, tularemia, anaplasmosis, RMSF, and PVD Lyme disease, ehrlichiosis, babesiosis, anaplasmosis, RMSF BMD, PVD, and tularemia None, headache is the most common presenting neurological symptom among all TBDs
Confusion/Altered Mental Status Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, and PVD Confusion: BMD

Altered mental status: ehrlichiosis, babesiosis, RMSF, and PVD

 Lyme disease,

anaplasmosis
Pain Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, tularemia, RMSF, and PVD Lyme disease, babesiosis, ehrlichiosis, anaplasmosis, tularemia, RMSF, and PVD PVD
Seizures Lyme disease, RMSF PVD Lyme disease, RMSF
Vertigo/Dizziness Lyme disease, RMSF None Lyme disease, RMSF
Tingling/Numbness Lyme disease None Lyme disease
Cognitive Function (concentration, memory difficulty, and word recall) Lyme disease None Lyme disease
Paralysis: difficulty swallowing (dysphagia) or Bell’s palsy Bell’s palsy: ehrlichiosis

dysphagia: Lyme disease

 Bell’s palsy: Lyme disease, ehrlichiosis, babesiosis

dysphagia: none

 Dysphagia: Lyme disease
Difficulty with, or slurred speech (Dysarthria) Lyme disease, anaplasmosis, ehrlichiosis, PVD, and RMSF None Lyme disease, anaplasmosis, ehrlichiosis, PVD, RMSF
Low Blood Pressure (hypotension) babesiosis, ehrlichiosis, and anaplasmosis (also present in TBRF) babesiosis ehrlichiosis, anaplasmosis, and TBRF
Fainting (syncope) Lyme disease, babesiosis None Lyme disease, babesiosis
Depression Lyme disease, babesiosis babesiosis, but uncommon Lyme disease
Anxiety Lyme disease (also present in TBRF) None Lyme disease
Fatigue and malaise Lyme disease, ehrlichiosis, anaplasmosis, and babesiosis Lyme disease, ehrlichiosis, anaplasmosis, babesiosis, and tularemia (and other TBDs) None, fatigue and malaise are commonly agreed upon as classic symptoms of TBDs
Mania, panic attacks, delusions, or hallucinations Lyme disease None Lyme disease

We also compared patient self-reported neuropsychiatric symptoms to those recognized by the CDC and the medical literature.

We discovered that patient self-reported symptoms aligned well with the medical case reports, but generally were not recognized by the CDC.

Through an online survey using a convenience sample of patients with self-reported tick bites and concomitant Lyme and other tick-borne diseases, we evaluated patient reports of neuropsychiatric symptoms.

Anxiety, depression, panic attacks

Anxiety, depression, panic attacks, hallucinations, delusions, and pain—ranging from headaches to neck stiffness and arthritis—were common among patients who report a tick-borne disease diagnosis.

Overall, pain and psychiatric symptoms were dominant presentations among survey respondents across all TBD diagnoses, with the majority reporting anxiety, depression, and panic attacks.

Additional reported symptoms also included those not acknowledged by public health officials, including delusions, hallucinations, and Obsessive Compulsive Disorder (OCD).

In contrast, Bell’s palsy, often noted as a classic sign of Lyme disease by public health officials, was reported less frequently by the respondents than psychiatric presentations.

Public health guidance does not align with the medical literature or with patient self-reported symptoms in our study.

We conclude that, “Given the multitude of non-specific patient symptoms this study indicates the need for a revised approach to tick-borne disease diagnosis. Our findings suggest the need for improved awareness of the wide range of associated symptoms and communication from official public health sources regarding tick-borne diseases.”

Click here to read the full article.

Sarah Maxwell, PhD, is an assistant provost and associate professor at the University of Texas at Dallas. Her research and grants focus on tick-borne disease surveillance and patient experiences with Lyme disease. She also serves on the scientific board of the Texas Lyme Alliance.

Category:

Lyme, Psychological Aspects, research