Archive for the ‘Lyme’ Category

FDA At it Again By Threatening MS Treatment

As most of you are aware, MS can be undiagnosed Lyme, and/or other infections.

https://anh-usa.org/fda-threatens-multiple-sclerosis-treatment/

FDA Threatens Multiple Sclerosis Treatment

 By ANH-USAOn 0
FDA Threatens Multiple Sclerosis Treatment

Clinical trials testing estriol for the treatment of multiple sclerosis show great promise…but the FDA is threatening to ban the only way patients can access this critical medicine. Action Alert!

Estriol is one of three main estrogens produced by the body, alongside estrone and estradiol. It is often used by integrative practitioners for its benefits to menopausal women, but recent investigations show that it may be effective in the treatment of multiple sclerosis (MS). Despite these health benefits, the FDA is poised to eliminate access to estriol and other bioidentical hormones made at compounding pharmacies. We cannot let this happen.

Estriol levels skyrocket during pregnancy, and many MS patients go into remission during pregnancy. Researchers have noted estriol’s anti-inflammatory and neuroprotective properties. This has culminated in clinical trials testing estriol as a treatment for MS, and the lead researcher on this trial recently said that so far, results have been “promising.”

Many studies have shown that estriol offers many other potential health benefits—for urinary tract and bone health, for example—without some of the dangers that accompany higher-potency estrogens, such as cancer.

Unfortunately, such a breakthrough may become moot if the FDA goes through with a ban on estriol and other compounded bioidentical hormones. Currently there are no FDA-approved estriol products; the only way patients can get estriol is through a compounding pharmacy.

Recall that the FDA is currently in the process of determining whether to ban estriol and other hormones from being made at compounding pharmacies. After ANH and other stakeholders mounted a massive grassroots campaign pushing back against this threat, the FDA asked the National Academies of Sciences, Engineering, and Medicine (NASEM) to evaluate the “clinical utility” of treating patients with compounded bioidentical hormones like estriol. We explained previously how NASEM’s process was heavily influenced by the FDA and outrageously biased against compounded hormones. In its final report, NASEM concluded, unsurprisingly, that widespread use of compounded hormones poses a “public health concern.”

This has no factual basis at all.  A review of the clinical literature concluded that bioidentical hormones are associated with lower risks, including the risk of breast cancer and cardiovascular disease, and are more effective than synthetic or animal-derived hormones. What seems to be underway is an attempt to create drug company monopolies. The result may be that women may not be able to obtain estriol at all, even though estriol protects against cancer.

The FDA still has hurdles to overcome before a ban can be issued: the agency has to issue a proposed rulemaking to add these hormones to the Difficult to Compound List. It’s also possible that the FDA could issue a draft guidance that restricts the use of cBHRT as outlined by NASEM’s recommendations.

The time to send a clear message to Congress and the FDA is now. We beat the FDA when they tried to ban estriol in 2008, and we can beat them again, but only if the entire community rises up and holds the agency’s feet to the fire. We cannot let the federal government interfere with our health.

Action Alert! Write to Congress and the FDA urging continued access to estriol and other important compounded bioidentical hormones. Please send your message immediately.

Go to top link to send a message to your representatives.

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**Comment**

The FDA is at it again.  Doing everything but what it should.

The FDA has a long and sordid history of colluding with Big Pharma by attempting to monopolize medicine by erasing anything it considers competition or a threat to its power:

Category:

Activism, Lyme, Viruses

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

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**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)

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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