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TICONDEROGA | Todd Condon creates art on his iPad, not necessarily because he prefers to, but because the joints in his fingers have seized up to the point that he cannot grip brushes and pens. He still has good days, which to him means getting to the grocery store and back without incident, or being relatively free of painful flare-ups that leave him virtually immobile.
All because of a tick no bigger than a celery seed.
Condon contracted Lyme disease three years ago, and the illness has become chronic largely, he says, because of a lengthy delay in its diagnosis. Doctors wrote off his condition to joint maladies or fibromyalgia and balked at his repeated requests for advanced blood work.
His joints and head throbbed, he was tired all the time, and he lost coordination and was easily confused.
“Everybody who knew me said, ‘What’s wrong with this guy?’” Condon said. “The scary thing was, I didn’t know myself.”
‘WHAT DO YOU DO NOW?’
For 25 years, Condon, of Eagle Lake, had worked for International Paper in Ticonderoga, but the disease eventually overcame his ability to do the job he loved. By this time he knew what was dogging him, having finally been availed of a specialist who performed the blood work Condon had wanted two years before.
The results were sobering. Not only did he have Lyme, he tested positive as well for West Nile disease and Bartonella, co-infections likely spread by the same tick.
Had Condon gotten the blood tests when he wanted, things might have been different. But now the condition had worked its way into his nervous system and advanced to the point that treatment was far less effective.
Physicians poured on the antibiotics, six months’ worth of pills taken twice daily and, when that didn’t work, prescribed a half-hour a day’s worth of intravenous drugs for a month. That didn’t work either.
“If the antibiotic isn’t doing anything, what do you do now?” he said.
Condon says he still has hope, if not relief. His other goal is to raise awareness of Lyme and help people who are in chronic pain, no matter what the cause. To that end he has started a Chronic Pain and Illness Support Group that meets at the Ticonderoga Hospital on the second Sunday of every month at 7 p.m.
“All are welcome to attend,” he said. “It’s a place where people can share their stories and feel they have a caring and supportive environment.”
Lyme was relatively unknown in the Adirondacks, until climate change expanded the range of the deer tick that carries it. According to research by Lee Ann Sporn, a professor at Paul Smith’s College, Essex County saw a severe spike in Lyme disease beginning in 2012.
But scientists and physicians have been dismayed this year that the New York Senate has to date failed to provide for a continuance of the funding that has paid for baseline research — an indication that Lyme is still not garnering the attention it should.
In a statement sent to the Senate in support of funding, Dr. Russ Hartung, emergency physician at Champlain Valley Physicians Hospital in Plattsburgh, said research into tick populations and infection rates provide critical guidance to the medical community.
“The general public may not realize that Lyme causes more than just achy joints and a rash,” he wrote. “It can cause critical illness like cardiac disease and meningitis, and the other tick-borne pathogens can be even worse.”
According to Spron’s research, “it’s a coin flip” as to whether a tick is a carrier or not, so it’s best to assume that any tick bite is cause for concern. Checking for ticks after being out in the bush is critical, since if the tick is pulled off within 24 hours, the disease, studies indicate, probably has not had time to be transmitted. Tick bites are also more dangerous in July and August than in the spring and fall.
Condon believes Lyme is still going undiagnosed and that too many in the medical and insurance industries still treat it as a phantom disease. It can be hard to find doctors that have a good, up-to-date understanding of Lyme, he said.
“I don’t think it’s gotten the proper attention,” he said. “If you don’t catch it quickly, you can get in trouble.”
Lyme is also insidious because it can come with co-infections and can show up differently in different people. Someone might be infected, but show no symptoms. And when they do show, those symptoms can vary radically, making diagnosis more difficult.
“You have to be your own advocate,” Condon said. “Find a doctor who is Lyme literate.”
Patients need to be careful too that the physician’s care will be covered by insurance, since companies sometimes balk at paying for Lyme treatments.
Condon said he’s a walking exhibit of the need for early treatment.
“It’s been three years of hell,” he said. “It feels like my joints are being torn apart on the inside. Things that people take for granted become a struggle. I just hope the word spreads far enough that people know what to do, and that no one else gets to this point.”
“The authorities have been using tick expansion and climate change to get research dollars. Climate change is a popular topic right now, and that is a great source of funding for related research. However, any research on ticks and climate change is inconclusive––in essence, there is no validity. The long-range, futuristic projections and statistical models are bogus science because blacklegged ticks have already been found in northern Canada. In fact, we documented blacklegged ticks on migratory songbirds in northern Alberta dating back to 1998. Any allocation of government funding for ticks and climate change research is a complete waste of taxpayers’ money. It will not help Lyme disease patients one iota.” Independent Canadian tick researcher, John Scott
Few LLMD’s take insurance forcing patients to pay expensive long-term bills out of pocket. Insurance companies are the ones coming after doctors who dare to treat in a way that is outside the CDC guidelines of essentially 21 days of doxycycline: https://www.dailykos.com/stories/2012/01/29/1059800/-Wisconsin-Lyme-doctor-gets-reprieve? Once they flag a doctor they nit-pick until they find any little thing: https://sciencebasedmedicine.org/chronic-lyme-vip-daniel-cameron-disciplined-by-new-york-medical-authorities/
10 Minute Video
https://madisonarealymesupportgroup.com/2018/09/08/acip-vote-yes-for-new-vaccine-despite-no-safety-studies-on-cumulative-effect-with-other-vaccines/ This is how brand new vaccines are approved to the pediatric immunization schedule. Basic dialogue before they voted:
Q: Is it dangerous to use this vaccine with other vaccines?
A: We have no data on that. Once approved, it will be given along with other vaccines but we have no clue whether that’s safe or not.
Somehow approving a new vaccine with no data on the accumulated cocktail effect is OK to them IF you put them in different limbs……scientifically, this is quite a head scratcher. By nature, vaccines are systemic.
Q: Do we at least have any data from other countries that used this vaccine in combination with other vaccines?
A: Not to my knowledge.
Sounds good to me. Lets vote yes!
Cynthia Donalson said it took them almost 9 months to find out their daughter was diagnosed with Lyme disease.
Donalson said for almost a year her daughter Anna who’s now 14 has been fighting to live a normal and healthier life.
“She had suffered off and on with stomach issues. She went from being 117 pounds to 104 pounds,” Donalson.
She said it started last March and that’s when they started to seek medical attention.
“She saw a gastroenterologist at Wolfson‘s had several trips to the emergency room. They tried everything and could not find anything,” Donalson said.
She said by the end of the summer she was 85 pounds. Last December a doctor diagnosed Anna with Lyme disease. The disease is caused by bacteria and is transmitted through a bite from an animal or insect.
“It was horrible to watch because she was basically disintegrating in front of me,” Donalson said.
Anna said it’s unclear where she got Lyme disease but she spent a lot of time at soccer fields diving in dirt and she believes she could have been bitten unknowingly.
Dr. Aylin Ozdemir, who is a pediatric integrative medicine doctor diagnosed Anna. Ozdemir said Lyme disease can often be difficult to diagnose.
“In many cases patients don’t even remember a tick bite so then they become patients with a myriad of symptoms, then somebody needs to connect the dots. Even the Centers for Disease Control and Infectious Disease Society of America confirms that we don’t have a good sterile-logical blood marker to diagnose Lyme disease and they fall short,” Ozdemir said.
The disease is curable and Donalson is warning other parents whose kids may have similar symptoms not to give up until they find a solution.
The Center for Disease and Control said, “People treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely.”
“Pursue, don’t give up, keep looking for help,” Donalson said.
Where to even begin…..
A scientist who co-authored a recent Public Health Agency of Canada study on the impact of Lyme disease during pregnancy says the illness can have fatal consequences for a developing fetus if the mother goes untreated.
“Miscarriage, newborn death, and newborns with respiratory problems or jaundice have been found to occur,” said American epidemiologist Alison Hinckley.
But the Centers for Disease Control and Prevention scientist says more research is needed to show a definitive link between Lyme disease and pregnancy complications, including whether the tick-borne illness can be passed from mother to baby in the womb.
Hinckley and four Public Health Agency of Canada scientists authored a recent report that reviewed 59 cases of pregnant mothers carrying Lyme disease and their pregnancy outcomes. The results were published in the November 2018 peer-reviewed science journal PLOS One, showing that 36 of the 59 fetuses had been harmed. Complications ranged from miscarriage and stillbirth to congenital abnormalities, respiratory distress and heart abnormalities.
“It is clear, however, that pregnant women who suspect that they might have contracted Lyme disease should see their health-care provider as quickly as possible to receive appropriate treatment and reduce the chance of poor fetal outcomes,” said Hinckley.
PHAC denied requests from the Herald to speak with any of the agency’s four scientists that coauthored the study. The Herald contacted the study’s lead author Lisa A. Waddell by email and phone but did not get a response.
The question remains, why do pregnant mothers with untreated Lyme disease risk harming their unborn baby?
The authors of the systematic review failed to provide a specific cause for any of the 36 pregnancies resulting in harm to the fetus, nor could they definitively say whether Lyme disease factored in any of the congenital malformations. The study couldn’t rule out transplacental transmission, that the bacteria causing Lyme disease, B. burgdorferi, could be passed from mother to baby in utero.
“It is biologically plausible that transplacental transmission of B. burgdorferi occurs given our understanding of transplacental spirochete transmission for other species of spirochetes (T. pallidum) in humans,” said the study. “However, the evidence in this systematic review on congenital malformations does not provide sufficient evidence to exclude or confirm a role for B. burgdorferi in congenital malformations.”
But the topic of in utero transmission of Lyme disease is not new and cases of it have been documented over the decades. As far back as 30 years ago the federal Department of Health acknowledged it as a legitimate form of transmission, stating in a June 1988 Canada Diseases Weekly Report that,
“Transplacental transmission of B. burgdoferi has been documented and may be associated with an increased risk of adverse pregnancy outcome.”
That it occurs is not up for debate, argues biologist Vett Lloyd of the Mount Allison University Lyme Research Network.
“There is evidence from epidemiological studies that the Lyme disease bacteria can be transmitted from mother to child,” said Lloyd, who’s also a leading Canadian tick expert. “There is also evidence from case studies of this.
“But what we don’t know are the answers to questions important to pregnant mothers: How often does this occur? Is it with every pregnancy when the mother is infected or one in 10? One in 100? One in a million?”
Ultimately, the study illustrates how much researchers don’t know about the impact of Lyme disease in pregnancy, she says. If in utero transmission occurs and the B. burgdorferi bacterium passes the placenta to the baby what happens then? In children and adults Lyme disease has the potential to target every vital organ.
“If it is transmitted in utero to a child, that increases the number of people who can potentially be infected,” said Lloyd. “There is no reason to think that a newborn would be any less affected by Lyme disease than an adult — the opposite would be a reasonable assumption.
This problem is compounded if a mother doesn’t know that she is infected with the Lyme disease bacteria, becomes pregnant while being treated or becomes infected while pregnant.”
The Herald made several attempts to speak to Dr. Robert Strang, the province’s chief medical officer of health, about the findings of the study but he declined to be interviewed. In an email statement Strang reaffirmed one of the main conclusions of the study: “There is not enough evidence to confirm that Lyme disease during pregnancy has any adverse effect on the fetus, Lyme disease can be effectively treated in pregnancy and that further research is needed,” stated Strang.
Strang’s statement also defends the way the province treats Lyme disease, including in pregnant mothers. “Nova Scotia’s approach to the diagnosis and treatment of Lyme disease, including Lyme disease in pregnancy, is based on current scientific evidence and is consistent with national and international evidence-based guidelines.”
Sue Faber, co-founder of LymeHope and a registered nurse, says PHAC is ignoring decades of documented proof of transplacental transmission and insists it’s only a matter of time before the medical community is forced to acknowledge it as a legitimate form of transmission that results in congenital Lyme disease — babies being born with the disease.
Over the year, her Lyme advocacy group has gotten thousands of letters from people across the country convinced family members have fallen victim to congenital Lyme disease. She also says a follow up study is needed to look at some of these families.
“For Lyme disease to be passed from mother to child in pregnancy challenges and deconstructs the status quo from Lyme being only a tick-borne disease to one that can be transmitted from human-to-human, mother-to-baby,” said Faber. “Once we acknowledge that this disease changes and we have a big problem on our hands.”
Anna Maddison, spokeswoman for PHAC, admits more research is required to better understand if there may be adverse effects of Lyme disease during pregnancy. She did not say what current or future research is planned to target questions around transplacental Lyme disease.
But Maddison did point to a new Pan-Canadian Lyme Disease Research Network and that part of its research mandate will include working with patients and families to help address gaps in knowledge. The Society of Obstetricians and Gynecologists of Canada is also reviewing current evidence on the effects of Lyme disease and other tick-borne diseases on pregnancy, she says.
“The aim is to equip health-care providers and women with evidence-based information and tools on Lyme disease and other tick-borne diseases during pregnancy,” said Maddison.
But Faber says she sees little evidence that PHAC is responding to the findings of the study with the urgency it deserves.
“Medical and scientific research needs to follow the precautionary principal,” said Faber. “If there’s a risk, it needs to be addressed. We have identified that human-to-human transmission is possible, and even if it’s plausible there’s a social responsibility to protect the public from exposure to harm.”
The truly despicable thing is the potential for congenital transmission has been known about for decades yet nothing has been done. Authorities continue to deny, deny, deny despite the lack of research. You’d think that research in this area would be a high priority knowing Lyme is the #1 vector-borne disease in the U.S. But no. They want more climate data….
I find it highly interesting that the minute the Zika scare came out, they KNEW it was sexually transmitted and announced it with abandon.
We desperately NEED transmission studies. We need to know ALL the bugs that can transmit it, if it’s spread congenitally, via breast milk, tears and other bodily fluids, via blood transfusion, organ transplants, etc.
We also desperately need to know the cumulative effects of Lyme with the various coinfections (polymicrobial nature).
Scott Zashin 1
1. Rheumatology, University of Texas Southwest Medical Center, Dallas, USA Corresponding author: Scott Zashin, firstname.lastname@example.org
Sjogren’s Syndrome is a chronic autoimmune disorder that causes the inflammation of the lacrimal and salivary glands, resulting in dryness of the eyes and mouth. In addition, fatigue and musculoskeletal pain, often described as aching, is very common. Treatment directed toward alleviating the fatigue and pain associated with Sjogren’s is currently very limited. This report describes a case of a 47-year-old female with suspected Sjogren’s based on long-standing dry eyes, dry mouth, joint pain, fatigue, elevated measures of inflammation, and a positive rheumatoid factor. She failed standard therapy but improved clinically with low-dose naltrexone therapy.
Low-dose naltrexone (LDN) is a unique compound that has pain-relieving and anti- inflammatory properties. Limited studies have shown benefit in helping relieve the pain in patients with fibromyalgia and improving disease activity in autoimmune conditions such as inflammatory bowel disease and multiple sclerosis. As a result, it seems reasonable that the medication might be useful in Sjogren’s Syndrome, an autoimmune condition that is associated with pain and inflammation.
A 47-year-old female was diagnosed with Sjogren’s Syndrome six years ago by another rheumatologist, based on her history of eye and mouth dryness. She was found to have a negative rheumatoid factor at that time, but her sedimentation rate by modified Westergren (erythrocyte sedimentation rate, ESR) was recorded as low as 48 and as high as 61 (normal: less than 20 mm/h). Her C-reactive protein (CRP) was 1.74 (normal less than 0.80 mg/dl). Two years ago, she saw a second rheumatologist who agreed with the diagnosis of Sjogren’s Syndrome. At that time, her rheumatoid factor was now elevated at 69 IU/ml (normal: less than 14 IU/m/). Her antinuclear antibody (ANA) and Sjogren antibodies (SS-A and SS-B) were absent. Her anti-CCP antibody and 14.3.3 ETA protein were normal. Her ESR was 48 and her CRP was 1.42. Past medical history included a diagnosis of fibromyalgia. She also had a history of breast cancer that had been in remission for 20 years, a generalized seizure disorder, and elevated liver tests with normal biopsy. Additional medical issues included symptoms of neuropathy, anxiety, and depression. A prior sleep study did not reveal evidence of sleep apnea. She first came to see this author 18 months ago, seeking another opinion, with complaints of fatigue, severe musculoskeletal pain, as well as dryness of her eyes and mouth.
Her daily medications to help with her symptoms of Sjogren’s Syndrome and fibromyalgia included Lexapro, Restasis, meloxicam 15 mg, vitamin D3, magnesium, tramadol 100 mg daily prn, salagen 5 mg tid prn, and hydroxychloroquine 400 mg daily. Her exam demonstrated widespread trigger points affecting both sides of her body, above and below her waist. Her blood work was remarkable for an ESR of 37 and a CRP of 0.77. Her alanine aminotransferase (ALT) was 40 U/L (normal 6-29 U/L).
She elected to try low-dose naltrexone (LDN), which was compounded using a short-acting filler and started at 1.5 mg daily with instructions to increase the medication weekly by 1.5 mg. She came back to see me two weeks after starting the medication and was taking 3 mg daily. She stated that she felt terrific. Her lab was remarkable for a normal ESR of 25 and a CRP of 2.33. Her ALT was normal.
She was seen in follow-up 16 months ago and remained on 3 mg of naltrexone. She felt well but complained of neuropathic pain. Her ESR was now 20. CRP was not ordered. Her ALT was 31 U/L. She was seen in follow-up 14 months ago and remained on 3 mg of naltrexone and continued to feel well without stiffness or pain. She noted that, previously, it would take her all day to feel better. Her ESR remained at 20 and CRP was only minimally increased at 0.87.
She was then seen in follow-up 11 months ago with complaints of increased achiness. She had widespread tender points. She was given a short course of corticosteroids with symptomatic improvement in place of meloxicam. Naltrexone was increased on that visit to 4.5 mg. On the day of that visit, her ESR was 40 and CRP was 25.7 ( current normal value less than 8 mg/L). She was again seen in follow-up nine months ago, doing well on 4.5 mg of naltrexone. Hydroxychloroquine was discontinued a few weeks earlier due to a prolonged QTc interval. Her ESR was back down to 20 and CRP was down to 10.9.
Overall, the patient noted significant clinical benefit with her fatigue and pain within two weeks of starting low-dose naltrexone but no significant change in her dry eyes or mouth. She continues to do well on low-dose naltrexone four months after stopping hydroxychloroquine due to the electrocardiogram (EKG) abnormalities. While her symptoms improved, what is most interesting about this case is that her clinical improvement was associated with an improvement in her inflammatory markers.
In the initial pilot study that used low-dose naltrexone in the treatment of fibromyalgia, the baseline sedimentation rate was a significant predictor of clinical response to LDN . It was of interest to note that this patient’s dramatic clinical response to LDN correlated with an improvement in her ESR. It is postulated that low-dose naltrexone has a beneficial effect on the immune system due to the following mechanisms.
Low-dose naltrexone blocks mu-, delta-, and other opioid receptors. These receptors are present in the cells of the immune system. This inhibition may result in an upregulation of endorphins, which in addition to decreasing pain, may have a beneficial effect on the immune abnormalities by suppressing cell growth .
Low-dose naltrexone inhibits microglia activity. Microglia are immune cells in the central nervous system that, when stimulated, produce inflammatory products that may be associated with pain, fatigue, cognitive dysfunction (brain fog) sleep, and mood disorders. Low-dose naltrexone inhibits toll-like receptors that are found in microglia cells. As a result, the production of inflammatory substances declines with resulting symptomatic improvement [3- 4]. The inhibition of these toll-like receptors has been postulated to be responsible for the effectiveness of hydroxychloroquine, a standard therapy in diseases such as Sjogren’s Syndrome and systemic lupus.
Overall, LDN is well-tolerated. The 50 mg standard dose of naltrexone is Food and Drug Administration (FDA) approved in the treatment of alcohol dependence and for inhibiting the effects of opioids. Low-dose naltrexone is sometimes used to help alleviate the symptoms of patients with chronic conditions, including fibromyalgia , Crohn’s disease [5-6], and multiple sclerosis . The use of LDN at this low dose and for these indications is considered “off-label” use. In other words, it has not undergone the rigorous testing needed to get the approval of the FDA. Side effects include but are not limited to vivid dreams (most patients take the medication in the evening, but morning dosing of the medication may help with this issue). Patients may experience a reduction in pain relief from narcotics for at least six to 24 hours after taking low-dose naltrexone. In addition, low-dose naltrexone should not be used in patients who are currently receiving opioid analgesics due to the possibility of acute opioid withdrawal. The medication should be avoided until it is felt that the narcotics are out of the patient’s system. Those patients taking thyroid replacement may require a lower amount of thyroid medication so periodic monitoring is indicated. The elevation of liver enzymes is a potential risk with naltrexone treatment but is not felt to be common with low-dose therapy. Other potential side effects may include but are not limited to gastrointestinal disturbances, such as stomach cramps and diarrhea, agitation, anxiety, flu-like symptoms, and headaches. The drug should be compounded with short-acting fillers, so calcium carbonate should be avoided. The most common starting dose is 0.5 mg daily in the evening and increased weekly up to a target dose of 4.5 mg. The drug can be started at higher doses. The drug should be stopped at a minimum of 24 hours prior to the time narcotics may be needed for pain relief for a scheduled surgical procedure. In my practice, I will ask patients to temporarily discontinue low-dose naltrexone 72 hours in advance of taking narcotics if the patient is new to therapy, to ensure pain relief [8-11].
Based on a Medline review, this is the first peer-reviewed case report of a patient with Sjogren’s Syndrome who was treated with low-dose naltrexone and obtained clinical benefits. As a result of this case, further study is needed to determine if low-dose naltrexone will subsequently prove to be a useful medication for treating Sjogren’s Syndrome.
Human subjects: Consent was obtained by all participants in this study. Conf licts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following: Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work. Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work. Other relationships: I prescribe low dose naltrexone to patients in my medical practice.
For an overview of Sjogren’s: https://www.hopkinsrheumatology.org/rheumtv/sjogrens-syndrome-disease-overview/ (3 Min Video) Please notice symptoms are quite similar to Lyme/MSIDS.
Sjögren’s Syndrome is an autoimmune disease that is found primarily in women, where inflammation at the salivary and lacrimal glands causes dryness of the eyes and mouth. However, it’s also a systemic disease that affects the entire body, producing joint pain and fatigue, and damaging internal organs. As many as four million Americans suffer from Sjögren’s Syndrome, which often overlaps with other rheumatic diseases making it very common to misdiagnose or overlook. Unfortunately, many patients are not diagnosed on time, which makes it much more difficult to treat. In this video, the Director of the Jerome L. Greene Sjögren’s Syndrome Center, Dr. Alan Baer, discusses the symptoms and problems that many patients with Sjögren’s Syndrome face.
If you search the internet with the words Lyme & Sjogren’s, tons of blogs will pop up with people with both. There isn’t much if any science on the two, however. This is another problem with research in Lyme-land – nobody is studying the effects of Lyme triggering or in conjunction with other syndromes within the body. A big problem.
Excerpt from The Lyme Book: http://www.lymebook.com/beg_signs_symptoms.pdf
Lyme disease can trigger autoimmunity, so some people will present with rheumatoid arthritis, lupus, Sjogren’s, Hashimoto’s thyroiditis or any number of autoimmune diseases. It may not be that these diagnoses are incorrect; it may just be that the Lyme infection has unbalanced the immune system sufficiently to trigger the autoimmune mechanism. Where there is autoimmune disease with sufficient evidence of Lyme disease (either through lab work or clinically), treating the Lyme will often improve, if not eliminate, the autoimmunity.
The key concept to grasp here is that of underlying cause. Western medicine has somehow distanced itself from the quest for discovery of the underlying cause of illness. As is the case with bromyalgia or chronicfatigue syndrome, the diagnosis describes a set of symptoms but does not explain why they occur.
https://madisonarealymesupportgroup.com/2018/05/18/bullseye-low-dose-naltrexone-lyme-disease-documentary/ Very informative documentary put out by the LDN Research Trust on Lyme/MSIDS. Dr. Horowitz, Dr. Toups, Dr. Schweig, Dr. Windham, Dr. Holtorf, & Dr. Schwarzback, speak on everything from testing, to diet, to inflammation, and how LDN can help Lyme/MSIDS patients.