Free on-line Chronic Lyme Disease Summit from Monday April 4-11, 2016.
https://madisonarealymesupportgroup.wordpress.com/2016/02/23/health-talks-on-line/ Info here.
http://chroniclymediseasesummit.com Click on this link to register.
https://www.envita.com/lyme-disease/is-fibromyalgia-the-real-diagnosis/
Is it fibromyalgia, Lupus, Chronic Fatigue, MS, or MSIDS?
The Envita Center has found by using detailed testing and a decade of experience that over 80% of the patients labeled with autoimmune diseases also have viral, bacterial, fungal, and parasitic infections, along with tick-borne infections like chronic Lyme disease complex or MSIDS (multi systemic infectious disease syndrome). To complicate matters, it is not uncommon for patients to also have chemical sensitivities or heavy metals toxicity.
These patients are sent to psychiatrists and prescribed psych meds instead of treating the root cause of the problem.
Why?
“Most physicians are not trained to look for latent infections in a ten minute office appointment.”
Due to a multitude of symptoms these patients are labeled as “hypochondriacs,” because they suffer with multiple issues including but not limited to depression, short-term memory loss, possible autoimmune diseases, digestive problems, migrating joint pain, and hormonal imbalances.
Doctors coin these folks “difficult,” because nothing seems to work. In the case of fibromyalgia, the sequence of symptoms used to diagnosis it are: key trigger points, depression, and sleep disturbances. There is a reason that these are never present in a textbook manner. In fact, most patients have even more symptoms than what is covered in the basic diagnostic write-up for fibromyalgia and chronic fatigue syndromes; however, when a proper infectious work-up is conducted alongside chemical toxicity and heavy metal screening, the complete symptom picture for each patient becomes clear, which should lead to treating the real pathology that is causing the symptoms, instead of just masking the pain.
“There are no simple treatments or testing solutions in the conventional model. However, once Cymbalta, the anti-depressant, came to market with a target for fibromyalgia patients, doctors started to recognize and “treat” the condition.”
“The pharmaceutical drug model drives the healthcare industry and ignores the necessary personalized diagnostics and treatment to take care of the cause of the disease.”
Most fibromyalgia patients have lymphocytosis. This occurs when infection has penetrated into the lymphatic system and deep into the connective tissue or even the nervous system.
The infection itself is protected by layers of biofilm communities. When the infection is found by conventional methods, prescribed antibiotics, will only provide temporary action against the bacteria. These cases need specialized testing with LLMD’s (Lyme literate medical doctors) and an integrative approach to help patients reach proper health by treating the cause of the disease, not just the symptoms.
Imbalances in key hormones like testosterone, thyroid, and cortisol are seen regularly in fibromyalgia, chronic fatigue, and MSIDS patients due to constant competition occurring at the receptors sites on their cells for hormones and neurotransmitters versus the neurotoxin. These patients start to see improvement once put on “bio-identical hormones,” but will not fully improve unless the infections, lack of sleep, and inflammation are treated.
For more information on bio-identical hormones, please listen to PhD, Kathy Lynch of Women’s International Pharmacy: https://madisonarealymesupportgroup.wordpress.com/2015/06/10/audio-on-hormones-and-adrenal-support/
Most of these patients have latent infections that are found deep in connective tissue, muscle, digestive tract, and nervous system including the brain.
The brain and spinal cord make up the central nervous system. Stimuli comes from the peripheral nervous system, which then comes back to the cord. The stimulus can become interrupted when nerve compression occurs, especially in the neck regions. This also impairs and delays the healing process for patients. The discs of the spine often become degenerative in fibromyalgia patients because of the infection. This occurs when the infection has impacted the disc. If you look closely, the patient’s pain is often found in the muscle and soft tissue regions and not really in the joint because of the neurotoxin impacting nerve innervation to muscle.
For more information on how chiropractic care can help with this, please read: https://madisonarealymesupportgroup.wordpress.com/2016/02/28/chiropractic-care-and-msids/ and come hear Dr. Isom speak at our next Lyme Support Meeting https://madisonarealymesupportgroup.wordpress.com/2016/03/22/dr-isom-to-speak-4916/
Once a person has gone through a treatment that addresses all of these pieces of the puzzle and they are symptom-free for 3 months or have stopped herxing for 3 months, whatever symptoms remain could be due to inflammation which can cause lingering pain and other symptoms. Some find help taking systemic enzymes which are unlike NSAIDS which can cause kidney and liver issues.
Please discuss all treatment and supplement options with your health care professional I am not a distributor and do not receive monies from any company. The following information is just my experience that I hope will help someone else out there.
It was found that when some Olympic teams used Wobenzym injuries were reduced by as much as 50% and that healing was enhanced after injury. Also, surgeons routinely prescribe it to prevent bruising and edema and the associated pain for their post-surgical patients.
Wobenzym n works by breaking down and destroying harmful proteins, known as Circulating Immune Complexes (CICs) which cause most joint inflammation. http://n.wobenzymonline.com/wobenzym-research Wobenzym must be taken on an empty stomach. http://www.antiaging-systems.com/153-wobenzym
*On a personal note – my husband and I both tried WobenzymN when we are in treatment for MSIDS with no effect. Once we went off all antibiotics as we hadn’t herxed in 3 months, we started a capsulated herbal program https://vitalplan.com/shop/restore-program for maintenance and to rebuild our bodies. During this time I still had excruciating pain in my spine, neck, and head. To rule out Chiari, I got a brain MRI (with and without contrast) and a cervical MRI. Just as was pointed out by Envita 4 paragraphs back, I was told I had “Degenerative disk disease in the cervical spine, most pronounced at C3-4 with (sic) moderate left foraminal narrowing due to facet arthropathy and normal MRI brain, in particular, there are no features of Arnold-Chiari type 1 malformation. There are no abnormal signal characteristics seen on T2 or FLAIR imaging.”
For information on Chiari go to: https://madisonarealymesupportgroup.wordpress.com/2016/04/02/chiari/
A bit of degenerative disk disease shouldn’t have caused the grueling pain I was experiencing. I remembered we had some WobenzymN in the drawer from the past (expired by 2 years!) and decided to give it a another try. I’m glad I did as it has taken nearly all pain away.
My theory is that it didn’t work earlier due to the pain being from an active infection. Since I believe I’m on top of the infections what is currently driving inflammation and pain is a autoimmune response that needs dampening down. Go here for two chiropractors who are saying the same thing: https://madisonarealymesupportgroup.wordpress.com/2016/03/09/ld-needs-a-new-approach/
**Update**
Eventually that horrific pain returned. Instead of increasing the Wobenzym, I decided to try MSM. Within 3 days 70% of the pain was gone. Within a month, 100% of the pain was gone. I take 1/4 tsp of MSM (OptiMSM patent) powder in about 4 oz of water twice a day. I’ve also made a home made MSM cream for topical pain. For more on DMSO & MSM: https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/ (Depending upon the size of the area, I take about 1 tsp of the cream and add about 10 drops 99% DMSO to it, mix it, and apply to clean, dry skin. It MUST completely dry before you let anything touch it. DMSO is a carrier and will take anything else into your body so no clothing, dyes, perfumes – anything can touch your skin before it’s dried) Please read the article in the link to be informed. DMSO is powerful stuff but you need to understand it.
Here’s more on Wobenzym or Systemic/Proteolytic Enzymes: https://madisonarealymesupportgroup.com/2016/04/22/systemic-enzymes/
https://madisonarealymesupportgroup.com/2018/03/05/how-proteolytic-enzymes-may-help-lyme-msids/
Another item on the list to try is LDN for pain, inflammation, sleep, and immune function: https://madisonarealymesupportgroup.com/2016/12/18/ldn/
The brand I use is found here (again, I’m not a distributor): https://madisonarealymesupportgroup.com/2019/01/16/ldn-cbd/
http://whatislyme.com/lewy-body-dementia-putting-the-puzzle-pieces-together/
The results are in. The autopsy report shows Robin Williams had Lewy Body Dementia, and microbiologist Tom Grier has a hypothesis:
“Alpha-Synuclein deposition inside the neurons may be a consequence of the presence of Borrelia inside the same neuron.”
To prove this hypothesis would require some special in-vitro work with human brain neurons.
Notable people who suffered from Lewy body dementia include:
• Actor Robin Williams
• Actress Estelle Getty
• Music industry icon Casey Kasem
• Athlete: Artist Don Featherstone, creator of the lawn flamingo.
Wonderful 26 minute documentary put out by student filmmakers from SUNY Broome Community College in New York exploring the impact of Lyme disease in their local area.
A few comments: they state that 70-80% of those bitten by a tick will get a bullseye rash, but according to ILADS (International Lyme and Associated Diseases Society), that number is less than 50%. Hardly anyone I talk to (and I talk to many) has seen a tick or a rash. In fact, I would go as far to say seeing a bullseye rash is the exception, not the norm.
Also, I felt they were extremely generous in their wording of many items such as testing for instance. They said they weren’t foolproof. Now that’s an understatement: https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
Did You Know?
52% of patients with chronic Lyme disease are negative by ELISA but positive by Western blot (Donta 2002). Between 20-30% of patients with confirmed Lyme disease are seronegative (Aguero-Rosenfeld 1996, 1993; Donta 1997). The College of American Pathologists (CAP) found that ELISA tests to not have adequate sensitivity to be used for screening purposes (Bakken 1997). LLMDs consider the specificity of the particular bands that test positive for a patient. The NIAID views the Western blot as the best method for detecting Borrelia antibodies. Although the CDC requires 5 of 10 bands to IgC surveillance purposes, 2 of 5 bands have specificity of 93-96% and a sensitivity of 100% (Engstrom 1995).
Two-Tier Testing
The most common diagnostic tests for Lyme disease are indirect ones. They measure the patient’s antibody response to the infection, not the infection itself. The two most-used antibody tests are the enzyme-linked immunosorbent assay (ELISA) and the Western blot. The CDC recommends that doctors first order an ELISA to screen for the disease and then confirm the disease with a Western blot.
During the first four-to-six weeks of Lyme infection, these tests are unreliable because most people have not yet developed the antibody response that the test measures. Even later in the illness, the two-tiered testing is highly insensitive
missing roughly half of those who have Lyme disease.
Chart from Lymedisease.org
HIV/AIDS is diagnosed with tests that are both highly sensitive and highly specific. They are accurate more than 99% of the time. How well would AIDS patients accept testing that was accurate less than half the time?
I felt they were also generous in their dialogue about whether Lyme Disease is chronic or not.
http://norvect.no/230-peer-reviewed-studies-show-evidence-of-persistent-lyme-disease/ According to NorVect, a Nordic non-profit organization, there are 230 studies stating borrelia persists. I can’t believe this is still being debated.
And lastly, there is Sapi’s recent work showing borrelia biofilms exist, further demonstrating the challenge in eradication. http://consumer.healthday.com/diseases-and-conditions-information-37/lyme-disease-news-454/lyme-disease-agent-that-eludes-antibiotics-found-study-708316.html
The CDC remains strangely quiet. Meanwhile an African proverb comes to mind:
“The ax forgets; the tree remembers.”
We may be cognitively impaired, but we are far from stupid!
Recap of the Evidence Based Health Policy Project held at the Wisconsin Capital yesterday:
Dr. Osorio, Associate Professor and Researcher, Department of Pathobiological Sciences, UW Madison spoke on Zika. If you are unfamiliar with this virus, please read: https://madisonarealymesupportgroup.wordpress.com/2016/02/05/zika-sexually-transmitted/ The most important take aways from his slide show was : 1) 80% of those infected with Zika don’t even know they have it. 2) 1 in 5 will have mild symptoms (fever, rash, joint pain, or conjunctivitis) lasting up to a week, and while those in Africa and South America are experiencing high infection rates, WI isn’t even on the radar (my words). One of the most important things he emphatically stated was that Zika caused the deaths of two babies due to two tissue samples that had Zika in them. (please hold this thought, I will deal with this later)
Next, Susan Paskewitz, Professor and Researcher, Medical Entomology Laboratory, UW Madison spoke primarily on West Nile Virus and Lyme Disease – with an emphasis on ticks and mosquitos. They have found some West Nile in mosquitos in WI but that the Northern mosquitos can not even carry Zika. She also stated that in regards to Lyme (borrelia), the two notorious carriers are the Dog tick (wood tick) and the deer tick (black legged tick), and that there is between 30,000 and 40,000 reported cases of Lyme (borrelia) in Wisconsin. She also stated that Wisconsin is a hot spot for Anaplasma with over 500 cases. She affirmed that ticks in WI are everywhere and on the move and that due to this, the disease has expanded as well. There is a nifty website where you can check out great information on ticks here: labs.russell.wisc.edu/wisconsin-ticks/.
After the slide shows they gave time for questions.
These are the things I spoke about:
*Since the EBHPP’s purpose and goals are to give timely, high quality information for evidence based decision making to increase UW research and teaching in topical issues of state public policy, I asked if it wasn’t perhaps more beneficial to discuss and act on something that Wisconsinites can get in their backyard, bedroom, and can spread congenitally?
*In regards to Zika I pointed out the statistics mentioned above as well as the fact that results of 2 tissue samples showing Zika is NOT evidence that the virus caused microcephaly that that we have viruses all over us, some good, some bad, but that doesn’t mean we are experiencing symptoms or active infection. Correlation is simply not the same as causality. There needs to be in depth studies on thousands of babies – those with and those without microcephaly, with pregnant women enrolled prospectively being monitored throughout the pregnancy with conclusive laboratory evidence.
*I also proposed two events that happened in the past year that more probably could have caused this microcephaly: 1) Brazil’s National Vaccine Schedule with DTap for Pregnant women to be given in the 27th week, 36th week, and up to 20 days prior to the expected date of birth – regardless of the lack of safety or effectiveness of Boostrix being established in pregnant women and that the Brazilian government has been vaccinating perhaps hundreds of thousands of pregnant women.
Published on Mar 29, 2016 Published on Mar 29, 2016 (15 min)
NVIC’s Barbara Loe Fisher reviews the medical literature that reveals that pertussis vaccines are not effectively preventing pertussis infection. To learn more continue to watch this commentary or read the fully referenced version at www.NVIC.org. Join NVIC’s Advocacy Portal to protect vaccine choice at www.NVICadvocacy.org.
2) A report published by the Physicians in the Crop-Sprayed Villages of Argentina that discounts the theory that the increase in microcephaly is due to Zika and that a chemical known as pyriproxyfen (C20 H19 NO3), a pyridine-based pesticide to eradicate mosquitoes has been applied by the State on drinking water used by the affected population for 18 months. Then I reminded them of our own experience of using DDT which caused birth defects and even deaths. Both of these events were about the length of the gestational period – just in time to see microcephaly. (Zika has been around for over 40 years and never caused problems before)
http://www.thevaccinereaction.org/2016/05/new-york-aerial-sprays-altosid-and-vectobac-pesticides-to-combat-zika/ Yet, despite Médicos de Pueblos Fumigados arguing that an insect growth regulator used in Brazil might actually be the reason for the microcephaly, the New York City Department of Health and Mental Hygiene is releasing similar growth regulators, Altosid and VectoBac, in pellet form from low-flying helicopters in Brooklyn, Queens, Staten Island, and The Bronx.
*I also spent considerable time discussing the plight of Lyme patients. That we are co-infected with numerous pathogens which make our cases far more complex than most realize. I spoke of borrelia, alone, and that it is pleomorphic with three shapes it can change into at will and that proper treatment needs to address this complexity and that 21 days of doxycycline, the current CDC standard of care is like throwing sand into the ocean. I spoke of 3 generations of Wisconsinites living under the same roof – all infected with MSIDS (multi systemic infectious disease syndrome). I explained that the myth that Lyme (borrelia) only causes a little joint pain and fatigue needs to be dispelled and that there is significant cognitive and psychological impairment with some suffering with severe anxiety, rage, confusion, depression, and memory loss.
Let’s stop talking about exotic tropical diseases and focus on what’s keeping Wisconsinites sick!
