My mom used to always say, “If you want something done right, do it yourself.”
That’s exactly what MyLymeData is all about. It uses big data research tools which allow patients to quickly and privately pool their experiences to determine which treatments work best. The project can accelerate research into the disease, by helping scientists identify the most promising areas to investigate.
“Up until now, studies of people with Lyme disease were few and far between,” according to Lorraine Johnson, CEO of LymeDisease.org, sponsor of the MyLymeData project. “The largest one funded by the National Institutes of Health enrolled 129 patients—more than 15 years ago.”
A patient education conference called MyLymeData2017: Overcoming Lyme Diseasewill be held April 8 in San Ramon, California, and will present the results from the first national large-scale longitudinal study of patients with Lyme disease ever conducted, and will also include the following presentations:
Lorraine Johnson, CEO of LymeDisease.org. “Latest Results from MyLymeData”
Ray Stricker, MD. “Designer Drugs for Lyme Disease: The New Pharma Frontier?”
Christine Green, MD, “How to Combat Stealth Pathogens Like Lyme & Co-infections”
Raj Patel, MD, “Treating Mold Illness in the Context of Lyme Disease”
Jennifer Sugden, ND, “Pediatric Lyme Disease”
The event will be held at the San Ramon Community Center, 12501 Alcosta Blvd., in San Ramon, from 1-5 pm on April 8. Pre-registration is $35. Admission at the door is $40.
More than 7000 patients have enrolled since MyLymeData began in November 2015. This puts it in the top 10% of patient-powered big data registries in the nation. Recruitment for the project is on-going.
https://www.lymedisease.org/mylymedata/ Please have your voice heard and be a part of this project that is revolutionizing research done on Tick Borne Illness.
Click on link to learn more about UnitedHealthcare Children’s Foundation, which provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their families commercial health insurance plan. Families can receive up to $5,000 per child ($10,000 lifetime maximum per child), and do not need to have insurance through UnitedHealthcare to be eligible. Children must be 16 or younger and living in the United States.Help can be for physical, occupational and speech therapies, surgeries, counseling, prescription medications, or medical equipment including: wheelchairs, orthotics, eyeglasses and hearing aids.
Click on Apply to see what is required to provide.
Is nitazoxanide (NTZ)- a real game changer for Lyme patients?
Written by: Wojciech Piotr Ozimek, independent lecturer and researcher specialized in parasitic and vector-borne diseases. Used with permission.
Nitazoxanide, a thiazolide compound, and its desacetyl derivative, tizoxanide, have antimicrobial properties against protozoa, cestodes, nematodes, trematodes, bacteria and viruses.
A retrospective review of charts of patients treated with nitazoxanide for infections caused by giardia lamblia, cryptosporidium parvum, blastocystis hominis, entamoeba histolytica, cyclospora, isospora and babesia caused infections demonstrated it’s high efficacy.
Unfortunately most of the studies showed that nitazoxanide is rather ineffective for the treatment of trichomoniasis.
Because the treatment of Helicobacter pylori infection may be jeopardized by metronidazole resistance, nitazoxanide and tizoxanide were tested in vitro and in vivo studies. Conclusions? It may be used as a single agent in the treatment of Helicobacter pylori and other Campylobacter sp. caused infections. It is also effective against Clostridium difficile caused infections.
There has been a study that claims there is some limited evidence for efficacy for SIBO (small intestinal bacterial overgrowth) in the context of an open label study, but no systematic review and all claims should be taken lightly.
Development of resistance to the two main classes of drugs used to treat intestinal nematode infections of humans has been reported. We need new and more effective drugs and ways to improve the efficacy of the old drugs. And again the promising alternative drug is nitazoxanide (NTZ). NTZ shown to have therapeutic activity against nematode (ascaris), cestode (taenia, hymenolepsis) and trematode (fasciola) infections. In addition NTZ combines synergistically with other classes of anthelmintic drugs, i.e. albendazole and pyrantel, making it a good candidate for further studies on its use in drug combination therapy of parasitic infections.
Lateef et al.. conducted a study in India that evaluated the effectiveness of nitazoxanide in the treatment of beef tapeworm (Taenia saginata) infection. They concluded that nitazoxanide is a well-tolerated drug for the treatment of niclosamide- and praziquantel-resistant beef tapeworm (Taenia saginata) infection.
It is also considered to be a “cyst busting” drug by some researchers, so can theoretically impact Borrelia, too.For these reasons, it is one of my favorite drugs, and in my opinion it should have a broader application for Lyme disease patients.
As if the above-mentioned benefits of nitazoxanide weren’t enough for some skeptics, the drug also impacts biofilm formation. This was shown by research published in Oxford’s Journal of Antimicrobial Chemotherapy, in a study entitled, “Nitazoxanide inhibits biofilm formation by Staphylococcus epidermidis by blocking accumulation on surfaces.” Several other studies also demonstrate nitazoxanide’s inhibition of biofilm forming.
And lastly, nitazoxanide has even been shown to inhibit numerous viruses, including hepatitis B and C viruses, rotavirus and influenza A virus (in vitro).
To summarize, nitazoxanide can be used to kill protozoa, cestodes, nematodes, trematodes, bacteriae (incl. cysts & biofilm forms) and viruses.
It’s no wonder that Lyme patients, who are often afflicted with many of mentioned above infections, can feel so much better as a result of using nitazoxanide.
Nitazoxanide should be one of the most multi-talented and broadly applicable drugs available to Lyme sufferers, and I consider it to be one of the most important medicines presented in the last years.
Nitazoxanide is an effective, inexpensive, and generally safe and well tolerated medicine. In the clinical trials no serious adverse events were reported. Adverse events occur in less than 1% of the patients but physician monitoring is still advisable.
Nitazoxanide is sold under the brand names Nizonide, Nitaxide, Nitax, Zox, Netazox, Niazid, Toza, Daxon, Dexidex, Kidonax, Mitafar, Pacovanton, Paramix, Alinia, Adonid, NT-TOX, Nitamax,and Annita.
Uploaded on Dec 24, 2016 Lecture to American Psychiatric Association NY Branch, Lenox Hill Hospital
This excellent video has Dr. Jane Marke discussing psychiatric illness in TBI patients, and while the technical lecture is given to psychiatrists it will be highly illuminating to patients. If you only want to know about psychiatric symptoms associated with Lyme, skip to around minute 28.
Marke states,
“Many doctors are convinced that after a short course of antibiotics patients should be well. The huge number of people still ill years after a course of antibiotics belie this assertion.”
“Patients with Lyme, and related tick-borne disease, can have symptoms which mimic every known psychiatric syndrome. Treatment aimed directly at symptoms can relieve suffering rather quickly. These symptoms include insomnia, anxiety, “brain fog”, obsessive-compulsive symptoms, depersonalization, depression, and rages. But antibiotics are needed to undermine the root cause of the illness: the bacteria that causes Lyme: Borrelia burgdorferi.”
Other noteworthy comments:
15:12 – Marke describes the flagella of borrelia is more like the winged arms on a wine bottle opener which powerfully propels the organism.
15:40 – She questions if psychiatric disorders are inflammatory diseases. She lists: Autism, Alzheimer’s, Schizophrenia, Bipolar, PTSD, Depression, Stress, Sleep Deprivation, Self-harm, and Suicid Attempts. She also describes a study in England observing children for over a decade in which children with a high IL-8 at age 8 have an 81% change of developing depression by age 18 and a 2-fold chance of becoming psychotic.
18:04 – She states that TBI’s (Tick Borne Illness) causes an impaired Hypopituitary Axis (HPA) which on a chronic basisdecreases cortisol and increases inflammation.
20:40 – Neurotoxins in the brain contribute to mental illness by causing problems with Homosysteine metabolism, which supresses remethylation, but that apoptosis (cell death) which can be reversed by supplementing with SamE.
21:30 – She says Post Treatment Lyme Syndrome (PTLS) is like a “dog whistle,” and usually demonstrates a bias on behalf of the authors who believe that 3 weeks of antibiotics cures LD. She then goes on to tell of a study that revealed that nearly 50% of those labeled as PTLS (with persistent symptoms) had anti-brain antibodies compared to 16.5% of Post Treatment Healthy Controls (no symptoms).
25:34 – Babesia and Bartonella are of extreme interest to psychiatrists.
*Bartonella produces most of the psychiatric problems as well as photophobia, floaters, blurred vision, bone pain, pain in the soles of the feet, headaches, the hallmark rash that looks like stretch marks, migratory polyneuropathy (burning, weakness, and numbness, on both sides of the body that moves around) and POTS (a fast heart-rate when one goes from a lying position to a standing position). Patients tend to exhibit OCD, self-mutilating behaviors, seizures, rage attacks, and psychosis (bipolar under this).
26:35 Persisting atypical and cystic forms drive local inflammation
28:23 Shows an excellent slide of the percentage of patients with late Lyme and various impairments such as Encephalopathy, memory issues, cognitive impairment, motor issues, and more.
31:15 She sites a study in which researchers set out to prove that there is no such thing as Late Lyme causing psychiatric problems. Compared to controls, chronic lyme patients met criteria for adult onset ADHD(both inattentive type and hyperactive/impulsive types combined) more frequently. She encourages doctors to take “syndromes,” and try to find an etiology, rather than the reverse, which is what is typically done. In this specific case, she’s asking doctors to question and try to find solid reasons (etiology) why an adult would all of a sudden have ADHD.
33:30 She says TBI patients are the worst sleepers she’s encountered. This is important because it is when toxins are cleared in the brain.
35:30 Depression is common in TBI patients.
36:50 She has an informative slide on suicides from those with Lyme collected from newspapers.
38:55 Shows a slide on Case studies of Intrusive Symptoms such as musical hallucinations, intrusive thoughts, Cognitive Tics, catastrophising, OCD.
41:00 Depersonalization, Violence, self-harm, and schizophrenia can be a part of the picture with TBI’s. At 41:20 she tells the story of a little girl who would throw horrific temper tantrums in which she would destroy her room and then feel absolutely horrible after the fact. She also had a psychotic episode. Her MSIDS testing came back flagrantly positive.
42:21 Autism – There is vertical transmission of Lyme from mother to fetus. Those with Bb in a study made remarkable improvement taking antibiotics.
42:56 Finding Spirochetes in Alzheimer’s patients as well as other pathogens.
45:18 She points out the CDC guidelines and controversies, including the very poor testing and the vilification of small labs. She recommends CLIA certified labs and that there is NO SUCH THING AS AN FDA APPROVED LAB. She recommends IGeneX labs as they report the bands to you and uses more than 1 strain of Bb.
48:17 She shows a SPECT scan with marked improvement after treatment with antibiotics for Encephalopathy. She also states that minocycline probably crosses the blood brain barrier the best.
Madison Area Lyme Support Group 