Ldn For Wegener’s And Chronic Fatiguefebruary 8 2022
Dear Dr. Gluck,
It has been about 21 years since we met on board Jans Barge the Etoile. Your LDN saved my life and we both have been feeling great since. Our doctor prescribed LDN to Charlotte after my wonderful recovery from Wegener’s granulomatosis and it turned out that she had been diagnosed years before with Chronic Fatigue Syndrome. After starting LDN her symptoms disappeared, but it was not until a few years ago that we realized it was also an autoimmune disease.
We always get our flu shots and of course we had our Moderna shots and booster, but we have not had a cold or felt sick since taking LDN. I celebrated my 82nd birthday Sunday with zooming with our two children and Charlotte and I will be celebrating our 59th wedding anniversary tomorrow.We have suggested LDN to many folks that we have met that have had autoimmune diseases and many have tried it with great results.
We live in Florida most of the year, but retreat to Massachusetts during the summers. We have not been traveling unfortunately due to the pandemic as we love to visit new areas of the world and miss it, but we feel safe with our personal trainer, Crystal, who gets us out walking morning and evening for 3 to 4 miles a day. Crystal is a Keeshond 2 year old puppy.
Your grateful friends,
Is Me/cfs A Tmpr3 Disease
Natural killer cell dysfunction, while important, is a sideshow to the much bigger question of whether wonky TMPR3 receptors in other cells could be causing ME/CFS? Because TMPR3 is found on so many cells problems with it could conceivably cause all the symptoms in ME/CFS.
Five years ago, it appeared that NCNED was on the cusp of truly big things. in 2016, the Griffith News report, Screening test for Chronic Fatigue Syndrome on its way, stated the NCNED group had identified new markers that can be used to screen patients and is now looking to partner with diagnostic companies to bring a test to market. Dr. Marshall-Gradisnik expected the test to become a laboratory standard to provide more certain, and cost-efficient, diagnosis for CFS.
Three years ago, Science Alert reported thatStaines and his team have been working to figure out the best markers that can be used to test for these faulty receptors, so they can begin to create a CFS/ME test, and were looking for medications that act on these receptors. They were also looking for medications that act on these specific calcium ion channels in the hopes of finding potential treatments for the disease.
Recently, Marshall-Gradisnik said in no uncertain terms that she believes an ion channel dysfunction is causing ME/CFS.
The Gist
Case Presentation: Case 3
A white British male sustained a head injury when 7 years old and was diagnosed with glandular fever when 10 years old. He developed severe tonsillitis in 1996 when 14 years old. His symptoms gradually worsened and he became bedridden and unable to self-care, suffering profound fatigue, headaches, excessive day and night sleeping and light and sound sensitivity. He was diagnosed with chronic fatigue syndrome by a hospital paediatrician in 1997. He gradually improved over the next 3 years with increased energy. By his mid-20s, he was able to work full time although with persistent tiredness and recurrent infections. He improved further by practising pacing, listening to body symptoms to control his activity and by changing jobs to one with flexible working hours, which he continues to this date. He continued to experience difficulty sleeping and recurrent colds, at least four per year, accompanied by energy dips and subsequent depression. He was diagnosed with nasal polyps, sinusitis and seasonal allergic rhinitis.
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Low Dose Naltrexone And Chronic Fatigue Syndrome
There is some light at the end of the tunnel.
You may have heard about Naltrexone or your doctor may have recently prescribed it for you for an auto-immune or fatigue condition. You may be thinking, OH NO, Not another medication! I am here to tell you that using Low Dose Naltrexone is not like using your average medication.
So what is LDN. For its intended use, Naltrexone is an opioid antagonist, traditionally used to treat opioid and heroine addiction. A standard dose for this purpose would be between 50mg to 300mg. However, for our purpose, Low Dose Naltrexone or LDN is given in doses between 0.5 to 4.5mg with 4.5mg being the therapeutic goal. In cases of chronic fatigue, you may start at 0.5mg and increase weekly or for many auto-immune conditions the usual starting dose is 1.5mg with weekly increases.
Low Dose Naltrexone is used for many conditions from cancer, multiple sclerosis, system lupus erythematosis, sjogrens, scleroderma. One of the most common is chronic fatigue syndrome or myalgic encephalomyelitis. There are many theories as to why people suffer from chronic fatigue syndrome, myalgic encephalomyelitis, or fibromyalgia. What we do know is that there is no specific treatment for these conditions. However, the benefit of LDN is promising for many.
The increase in circulating endorphins has been shown to reduce pain, give an increased sense of wellbeing, and act on the immune cells by helping them to restore normal function.
References
Icipant Characteristics And Blood Parameters
Eighteen age- and sex-matched participants were included for this investigation. Demographic data for patients are summarised in Table 1. There was no significant difference in age or gender between ME/CFS patients and HC. The SF-36 and WHODAS surveys were used to determine participant health-related-quality of life . As expected, there was a significant difference in SF-36 and WHODAS scores between ME/CFS patients and HC. Moreover, full blood count parameters were measured for each healthy participant and ME/CFS patients . While we reported a significant difference for eosinophils between healthy participants and ME/CFS patients, all results were within the specified reference ranges as provided by the Gold Coast University Hospital Pathology Unit, NATA accredited laboratory. No significant differences were reported in other parameters. Finally, ME/CFS patients reported improvement in impaired thought, concentration and cognitive overload as well as other immune disturbances symptoms after treatment with LDN , as described before .
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What Are The Side Effects Of Low Dose Naltrexone
Side effects with low dose naltrexone are uncommon because the dose is so low and have been reported by less than 8% of people. Low dose naltrexone is unlikely to cause the same side effects as high dose naltrexone. Side effects of low dose naltrexone may include:
- Difficulty sleeping
- Rarely, prolonged erections
- Rarely, weight loss.
Difficulty sleeping initially was reported by approximately 8% of people receiving low dose naltrexone but this resolved within two weeks in most people. Other side effects were reported by less than 1% of people.
Low dose naltrexone is usually well tolerated with few side effects. Some people need a more gradual increase in their dosage to help them tolerate the drug. Low dose naltrexone should be started at an extremely low dose, such as 1 to 1.5mg/day, and the dosage should be increased by 1mg every week to a maximum of 4.5 mg/day.
What Is Chronic Fatigue Syndrome
Myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome is a medical condition characterized by extreme fatigue that is not caused by another underlying health condition. People suffering from chronic fatigue syndrome may find it difficult to go about their day doing normal tasks, as these tasks could often make their fatigue worse.
Currently, there is no known reason why chronic fatigue syndrome develops, though it has been theorized that psychological stress or viral infections could trigger its symptoms.
The symptoms of chronic fatigue syndrome include muscle or joint pain, confusion, depression, exhaustion, sensitivity to pain, inability to concentrate, and more. Treatment for chronic fatigue syndrome has been limited to antidepressants and relaxation techniques.
But in recent years, some studies have shown that low dose naltrexone could benefit those suffering from Chronic fatigue syndrome.
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Ldn Might Be Helpful In Chronic Fatigue Syndrome/fibromyalgia Because
it may be able to reregulate immune functioning and increase neurotransmitters called endorphins that may be low in the disorder.
Endorphins are released into the spinal cord by the pituitary gland and hypothalamus in the HPA axiz. Many studies have shown mild to moderate dysfunction of the HPA axis is present in chronic fatigue syndrome. The fact that beta-endorphin is made from the same substance which is the precursor for ACTH, which some studies suggest is low in ME/CFS, suggests endorphin levels could be low in the disorder.
LDNs ability to modulate natural killer cell activity upwards and reduce B-cell activity could also help to re-regulate the immune response in ME/CFS. Its ability to reduce microglial functioning could reduce the fatigue and pain and other symptoms associated with the sickness response. A small 2009 study found significantly reduced sensitivity to pain after 8 weeks of LDN use in fibromyalgia.
Introducing Low Dose Naltrexone For Fibromyalgia Management At The Doleys Clinic
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Have you ever felt like your fibromyalgia was misunderstood? Have you ever been told that your pain is all in your head?
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Have you been subjected to expensive and possibly ineffective procedures?
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Anddid you know that opioids used to treat other types of chronic pain can actually make your unique fibromyalgia symptoms worse?
That sounds like a recipe for frustration and disappointment. You have real pain. You dont want a temporary Band-Aid. Most likely, you want a solution that targets the underlying fibromyalgia disease process.
Thats why we at The Doleys Clinic are so excited to offer our LDN program for individuals suffering from fibromyalgia and associated fatigue. Naltrexone is not a typical pain medicine . However, at lower doses, it has been shown in multiple published studies to provide relief from symptoms associated with Fibromyalgia and Chronic Fatigue Syndrome.
LDN targets glial cells, which are immune and support cells that surround nerve cells. When triggered for action, glial cells start to release inflammatory chemicals that irritate the nerve cells around them. Pain pathways get hypersensitized. You already know this if you feel sensitive to the light touch of clothing or a shower, or when you feel that even your hair hurts! LDN essentially tells those glial cells to calm down and stop releasing inflammatory chemicals, which can allow the nerves to react normally to input again.
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Restoring Trpm3 Ion Channel Function
In addition to this perspective, and more recently, there has been an association found between abnormal cation channel functioning and chronic fatigue. Transient receptor potential melastatin 3 is a calcium permeable nonselective channel that is activated by a vast array of stimuli in the environment, ranging from temperature, natural chemicals, and toxins or synthetic compounds. As it tightly controls the influx of calcium ions, this channel is essential in maintaining natural killer cell functioning and cytokine production. A significant reduction in both TRPM3 surface expression and intracellular calcium mobilization in natural killer cells has been found in chronic fatigue patients compared with healthy controls.
When administered, LDN restored the impaired TRPM3 ion channel function in natural killer cells of patients. Polo, et al, also tested the use of LDN further clinically with 218 patients with a diagnosis of chronic fatigue syndrome. Low dose naltrexone was administered during an average follow-up time of 1.7 years. A reduction in pain symptoms was found in 73.9% of patients with most patients experiencing improved alertness, physical and cognitive performance.
Me/cfs: Treatment For Some Where None Are Approved Now
Myalgic encephalomyelitis/chronic fatigue syndrome is a chronic, multisystem disorder characterized by profound fatigue and loss of function lasting 6 months or longer, post-exertional malaise, unrefreshing sleep, and other symptoms varying across individuals, including widespread pain, cognitive dysfunction, and orthostatic intolerance. Prevalence ranges from 0.2% to 0.4% of the population, and about a quarter are partially or completely bedbound.
Clinical trials of any treatments in ME/CFS are difficult because of the lack of a single-best case definition and absence of biomarkers for diagnosis, or for objectively assessing response to interventions. Overall funding for the illness has been suboptimal.
The three cases in the current BMJ Case Reports article two of which involved the article’s coauthors detailed patients with longstanding, severe ME/CFS who had tried many other treatments before starting LDN.
Responses to LDN varied from a “life-changing” full recovery of function to partial improvements in pain and sleep.
The lead author and Case #1 herself is Monica Bolton, a UK physician who contracted viral meningitis from a patient in 1988 when she was 33, and subsequently developed ME/CFS. She remained completely bed- and wheelchair-bound for most of the next three decades, her medical career derailed. Her symptoms included profound weakness, fatigue, light and sound sensitivity, cognitive impairment, and widespread pain, all worsening on exertion.
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Getting Low Dose Naltrexone
The preliminary evidence continues to show that low-dose naltrexone has a specific and clinically beneficial impact on fibromyalgia pain. The medication is widely available, inexpensive, safe, and well-tolerated.
LDN, a compounded drug, is, fortunately, relatively cheap and easy to get. The biggest hurdle many patients may face is getting a prescription from a doctor unfamiliar with the drug. You might want to check out the Starting the Conversation chapter in The LDN Book for advice on how to enroll your doctor in writing a prescription for you. Or you could find a doctor who may prescribe it for you.
- Find doctors that prescribe LDN here, here, and here.
- Find pharmacies that compound LDN here and here. LDN Science asserts many compounding pharmacies are not reliable. They provide a list of 7 pharmacies they consider reliable here. They recommend that LDN not be used in its slow-release form and that calcium carbonate not be used. Avicel, lactose, and sucrose fillers work fine.
- Immune Therapeutics the drug manufacturer licensed to market LDN drugs partnered with KRS Biotechnologies in Jan. 2015 to produce a standardized version of LDN for sale to the public and clinical trials. Costs for this high-quality, but higher-cost source of LDN are $1 a tablet. Find more about this here.
A Tipping Point For Ldnnovember 2022
Lauren Nichols, who has long COVID, takes her second pill of the day of LDN at her home in Andover, Massachusetts, U.S., August 3, 2022.
According to Reuters news service, interest in LDN for long COVID is spreading rapidly, not only to patients and research centers but also to the NIH. Also, a new study out of Dublin shows great promise for those suffering from long COVID.
Learn more in the LDN Editor’s Blog, as well as on our LDN Clinical Trials page.
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Does Low Dose Naltrexone Cause Weight Loss
It is possible that low dose naltrexone may help with weight loss because lower dosages of naltrexone are thought to curb hunger and food cravings. Contrave is a long-acting tablet that contains 8mg of naltrexone and 90mg of bupropion that is FDA approved for weight loss in people who are overweight or obese with at least one weight-related condition such as high blood pressure or type 2 diabetes. In clinical trials, 36% to 48% of patients taking Contrave lost at least 5% of body weight. The dosage of naltrexone in Contrave is 8mg, which is higher than the amount typically used for low dose naltrexone but much less than the dose used for opioid withdrawal.
Weight gain is not a common side effect with low dose naltrexone treatment.
When How To Take
Dr Whitaker states that the ideal dose is different for each person. Some doctors recommend starting at 1mg. Common dosages are 1.5mg, 3mg, 4.5mg. When beginning use of LDN, the drug must be stepped up over 6-8+ weeks as it may keep you awake discuss how best to do this with your doctor and pharmacist.
LDN is usually taken at bedtime. Some people take LDN in the morning to minimize sleep disturbance, insomnia, and vivid dreams.
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Fibromyalgia And Me/cfs Low Dose Naltrexone Studies
LDN has not been well-studied in either disease but two small fibromyalgia studies led by Jarred Younger suggest LDN may be able to help some people with fibromyalgia. A 2009 single-blind crossover study found that LDN significantly reduced pain, fatigue, and stress levels.
Once patients were off the drug, their symptom levels quickly returned. Intriguingly, a measure of inflammation called erythrocyte sedimentation level predicted 80% of the responses. The fact that higher initial ESRs were associated with greater reductions in symptom severity suggests that FM patients with more inflammation might benefit the most from LDN. In other words, the more symptoms you have the better you might benefit.
A larger placebo-controlled, double-blinded, crossover study produced similar results: reduced pain, improved mood, and increased general satisfaction with life. LDN was not a miracle drug FM was still present but it did reduce about 30% of the pain in about 60% of the participants.
The first chronic fatigue syndrome study a retrospective study assessing the charts of 218 patients found that about half the participants experienced some improvement in at least two more symptoms. A 2019 case report also fleshed out the experiences of three ME/CFS patients. Recently, an Australian laboratory study suggested that LDN may help with the natural killer cell problems found in ME/CFS.
Patient I: Viral Meningitis Onset
One person was a healthy general practitioner until, at age 33, she developed viral meningitis and became bedbound, unable to care for herself, and experienced dizziness, widespread pain and anxiety. Over time she slowly improved and was able to return to work only on a part-time basis but suffered from headaches, fatigue, postexertional malaise and migraines. After extensive testing proved futile, she was diagnosed with chronic fatigue syndrome in 1989.
A stomach flu 10 years later left her bedbound again, unable to tolerate many foods, dependent on a wheelchair to get around and on caregivers for support. Various treatments provided little help.
After decades being severely disabled, one patient recovered completely by taking very high doses of LDN!
Twenty-one years after becoming ill, she was treated with low dose naltrexone . She slowly ramped up the dose, noticed only slightly increased energy at 4.5 mg/day but then had to cut back to 3 mg/day because of headaches. Ten months later, she made what turned out to be a momentous decision and over time successfully ramped the dose up enormously.
At 9 mg/day her abdominal pain disappeared and she was able to resume a full diet for the first time in years. She continued to experiment with dosage and for the past 8 years has taken 6mg/day two times a day or almost three times the highest normal dose.
She wrote:
Treatment Takeaways
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