Six Types of Tissue That Can Be Regenerated Through Nutritionvia ProHealth.com by Sayer Ji* May 30, 2012 Nutrition research writer Sayer Ji is founder and chair of GreenMedInfo.com – a not-for-profit consumer advocacy site offering 'the world’s largest natural medicine database,’ with a searchable index linking to more than 18,000 biomedical study abstracts. This article, first published May 23, 2012, is reproduced with kind permission from Sayer Ji’s blog. ©2012 GreenMedInfo.com all rights reserved. The tissues discussed are nerves, liver, beta cells (pancreas), hormones, heart, and cartilage/joint/spine. ____________
6 Bodily Tissues That Can Be Regenerated Through Nutrition
It may come as a surprise to some, especially those with conventional medical training, but the default state of the body is one of ceaseless regeneration. Without the flame-like process of continual cell turnover within the body - life and death ceaselessly intertwined - the miracle of the human body would not exist.
Consider the fact that every two days the enterocytes lining your intestines are completely replaced, and that within 100 days almost every atom and molecule within your body has been excreted, breathed out, or sloughed off, only to be replaced by new ones from the food you ate, the water you drank or the air you breathed in, in the interim.
In times of illness, however, regenerative processes are overcome by degenerative ones.
This is where [wholistic] medicine may perform its most noble feat, nudging the body back into balance with foods, herbs, nutrients, healing energies; i.e., healing intention.
Today, however, drug-based medicine invariably uses chemicals that have not one iota of regenerative potential; to the contrary, they almost always interfere with bodily self-renewal in order to suppress the symptoms against which they are applied.
Despite the outright heretical nature of things which stimulate healing and regeneration vis-à-vis the conventional medical system which frowns upon, or is incredulous towards, spontaneous remission in favor of symptom suppression and disease management - over the course of the past few years of trolling MEDLINE we have collected a series of remarkable studies on the topic.
Nerve Regeneration
There are actually a broad range of natural compounds with proven nerve-regenerative effects. A 2010 study published in the journal Rejuvenation Research, for instance, found a combination of blueberry, green tea and carnosine have neuritogenic (i.e., promoting neuronal regeneration) and stem-cell regenerative effects in an animal model of neurodegenerative disease.(1)
Other researched neuritogenic substances include:
1. Curcumin (compound in turmeric)
2. Lion’s Mane Mushroom
3. Apigenin (compound in vegetables like celery)
4. Blueberry
5. Ginseng
6. Huperzine (from ‘fir moss’)
7. Natto (from fermented soybeans)
8. Red Sage (compound in root of a type of salvia native to China and Japan).
9. Resveratrol (compound in grapes, red wine, purple grape juice, peanuts, some berries)
10. Royal Jelly
11. Theanine (amino acid derived most commonly in Camellia sinensis teas, esp green tea)
12. Ashwaganda (‘Indian ginseng’)
13. Coffee (trigonelline)
There is another class of nerve-healing substances, known as remyelinating compounds, which stimulate the repair of the protective sheath around the axon of the neurons known as myelin, and which is often damaged in neurological injury and/or dysfunction, especially autoimmune and vaccine-induced demyelination disorders.
It should also be noted that even music and falling in love have been studied for possibly stimulating neurogenesis, regeneration and/or repair of neurons, indicating that regenerative medicine does not necessary require the ingestion of anything.
Rather, a wide range of therapeutic actions may be employed to improve health and well-being, as well.
(To view the first-hand biomedical citations on these neuritogenic substances, visit the GreenMedInfo Neuritogenic Research page on the topic.)
Liver Regeneration
Glycyrrhizin, a compound found within licorice, and which we recently featured as a powerful anti-SARS virus agent, has also been found to stimulate the regeneration of liver mass and function in the animal model of hepatectomy. Other liver regenerative substances include:
1. Carvacrol (a volatile compound in oregano)
2. Curcumin
3. Korean Ginseng
4. Rooibos (aka ‘bush tea’)
5. Vitamin E
[Note: another substance in this category that Sayer Ji may discuss in future is Milk Thistle.]
(View the first-hand biomedical citations on the GreenMedInfo Liver Regeneration research page.)
Beta-Cell Regeneration
Unfortunately, the medical community has yet to harness the diabetes-reversing potential of natural compounds.
Whereas expensive stem cell therapies, islet cell transplants, and an array of synthetic drugs in the developmental pipeline are the focus of billions of dollars of research annually, our kitchen cupboards and backyards may already contain the long sought-after cure for type 1 diabetes.
The following compounds have been demonstrated experimentally to support regeneration of the insulin-producing beta cells, which are destroyed in insulin dependent diabetes, and which once restored, may (at least in theory) help restore the health of the patient to the point where they no longer require insulin replacement.
1. Gymenna Sylvestre ("the sugar destroyer")
2. Nigella Sativa ("black cumin")
3. Vitamin D
4. Curcumin (from the spice turmeric)
5. Arginine (amino acid)
6. Avocado
7. Berberine (found in bitter herbs such as Goldenseal and Barberry)
8. Bitter Melon
9. Chard (yes, the green leafy vegetables)
10. Corn Silk
11. Stevia
12. Sulforaphane (especially concentrated in broccoli sprouts).
(View the first-hand biomedical citations on the Beta Cell Regeneration research page.)
Hormone Regeneration
There are secretagogues, which increase the endocrine glands' ability to secrete more hormone.
And there are substances that truly support regeneration of hormones which have degraded (by emitting electrons) into potentially carcinogenic "transient hormone" metabolites.
One of these substances is vitamin C. A powerful electron donor, this vitamin has the ability to contribute electrons to help resurrect the form and function of estradiol (estrogen; E2), progesterone, testosterone, for instance.(2)
In tandem with foods that are able to support the function of glands, such as the ovaries, vitamin C may represent an excellent complement or alternative to hormone replacement therapy.
Cardiac Cell Regeneration
Not too long ago, it was believed that cardiac tissue was uniquely incapable of being regenerated.
A new, but rapidly growing body of experimental research now indicates that this is simply not true, and there is a class of heart-tissue regenerating compounds known as neocardiogenic substances.
Neocardiogenic substances are able to stimulate the formation of cardiac progenitor cells which can differentiate into healthy heart tissue, and they include the following:
1. Resveratrol
2. Siberian Ginseng (Eleuthero)
3. Red Wine Extract
4. Geum Japonicum
5. N-acetyl-cysteine
Another remarkable example of cardiac cell regeneration is through what is known as fetomaternal trafficking of stem cells through the placenta.
In a recent article we discussed the amazing process known as "fetal microchimerism" by which the fetus contributes stem cells to the mother which are capable of regenerating her damaged heart cells, and possibly a wide range of other cell types.
Cartilage / Joint / Spine Regeneration
As for the spinal cord, curcumin and resveratrol have been shown to support improved recovery from spinal cord injury.
(Over a dozen other natural compounds hold promise in this area, which can be viewed on our Spinal Cord Injury research page.)
As for degenerative joint disease, i.e., osteoarthritis, there is a broad range of potentially regenerative substances.
(With 50 listed on our osteoarthritis research page.)
* * * *
Ultimately, regenerative medicine threatens to undermine the very economic infrastructure that props up the modern, drug-based and quite candidly degenerative medical system.
Symptom suppression is profitable because it guarantees both the perpetuation of the original underlying disease, and the generation of an ever-expanding array of additional, treatment-induced symptoms.
This is the non-sustainable, infinite growth model which shares features characteristic of the process of cancer itself - a model, which by its very nature, is doomed to fail and eventually collapse.
Cultivating diets, lifestyles and attitudes conducive to bodily regeneration can interrupt this pathological circuit, and help us to attain the bodily freedom that is a precondition for the liberation of the human soul and spirit, as well.
- Sayer Ji
____ 1. “NT-020, a natural therapeutic approach to optimize spatial memory performance and increase neural progenitor cell proliferation and decrease inflammation in the aged rat,” Rejuvenation Res. 2010 Jun 29. Epub 2010 Jun 29. PMID: 20586644 2. “Photo-induced regeneration of hormones by electron transfer processes: Potential biological and medical consequences.” Radiat Phys Chem Oxf Engl 1993. Updated 2011 Aug ;80(8):890-894. PMID: 21814301 Disclaimer: This information (©2012 GreenMedInfo.com. All Rights Reserved) has not been reviewed by the FDA. It is general information, based on the research of Sayer Ji unless otherwise noted; and does not necessarily reflect the views of GreenMedInfo or its staff, or that of ProHealth, Inc. It is not intended as medical advice, or for prevention, diagnosis or treatment for any condition, illness or disease; and is not meant to replace a one-on-one relationship with a qualified healthcare professional. It is always very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.
A fantastic new FREE resource compiled in 2012 with input from Drs Bested, Bateman, Lapp and seven other ME/CFS specialists from Canada, the US and New Zealand. Forty Pages. Please print one off for your GP to further increase awareness and education. The Primer is found at: http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
Laura Hillenbrand is an author with ME/CFS. Her essay, "A Sudden Illness," in The New Yorker won the national magazine award for best essay in 2003. Please read and share this compelling account of the ME/CFS experience to help build awareness. The essay is available here: http://bit.ly/a-sudden-illness.
I came across this thread about ME in a forum that's linked to a general blog by an ER nurse. As such, the posters are mainly healthcare professionals. I've never seen such condensed ignorance and malice in reference to ME/CFS patients before in my life. Just one more reason why we can't tolerate the hospital environment, and why awareness needs to be raised. However, this lot seems more keen on negating and/or ridiculing our experience and using it as the basis of their own entertainment.http://crass-pollination-forum.2287843.n4.nabble.com/Myalgic-Encephalomyelitis-td4607325i40.htmlNurses called Sparky, Tothepointe and others make the following comments:- "CFS/ME - continual fuckery syndrome/massive ego"
- [in reference to ME patients] "How amazing! Look at all the energy these delicate flowers have found! They can stare at that big bright screen and type on those little keyboard letters and try to put things in coherent order!"
- [in reference to a video of Linda Crowhurst] "... she flings her head into the chair like a demented woodpecker"
- "She gets sedated to have the central line put in? How do they sedate her without IV access? We just throw a sterile drape over their face and tell them to chill out under there, if they start to fuss."
- ".... "ME" ... seems a weird blend of passive agressive martyrdom. Here in the US if you don't complain about it, it doesn't exist."
- "ME could be a kind of folie à deux. Often it's a mother daughter thing starting of with the daughter suffering from some postviral fatigue. This normally wears off after a couple of days. But in these cases they get so much attention and loving care that produce more dramatic stuff to keep that situation going. Mom then founds a support group for ME /CFS and finally has some sense of purpose and significance in her life. So to them it's a win/win situation - at least it feels that way.
- "I have a friend who was perfectly normal (a bit of a drama lama but nothing unbearable) until she got 'ill' and forced her GP to diagnose her with ME. She now frequents online support forums and has turned into a total drama queen bore. Within the space of a couple of months, she decided she could no longer walk because of the pain in her legs and needed a wheelchair. She decided she could no longer type and needed one of those speech to text programmes. She decided she was too ill to use the bath or shower, so she wiped herself down with wipes every day. She decided it hurts too much to chew, so she bought herself a load of nutrition shakes. She loves to tell me about her neurological disease and how angry she is that her GP won't refer her to a neurologist. Her favourite one has gone on long-term leave and wouldn't you with a patient like that?"
- [about Karina Hansen in Denmark, who's very ill with ME and has been threatened to be put into a psychiatric ward] "Her family have lived in a trailer in the yard (yes, that's right, A TRAILER IN THE YARD) for two years because she can't handle the noise. She hasn't had a bath in two years, it hurts too much. Apparently moving her will cause her to die, I'm not sure why. I suppose she'll just snap in two. Maybe her bodily funk has melded her to the bed. Here is a picture of Miss Karina. Shhh, let's be vewy quiet. If we are noisy SHE COULD DIE.
- [about Linda Crowhurst and her uncontrollable body movements] "I was reading this [thread] while half watching the enthusiastic head bobbing (almost like there's a woodpecker in the back of her head trying to peck through the chair) and the combo was exceedingly delightful."
They also make fun of Sophia Mirza for not being able to take her 'sippy-cup ass to the hospital' to get proper hydration so she wouldn't die. This thread contains a disgusting display of where a lack of compassion and wisdom can get you. And, is a great illustration of one of the reasons why some ME patients avoid the Emergency Department. A lot of PME have posted responses; some are not helpful to us as a patient group! If you want to post a response, please be mindful and don't sink to taking cheap shots. We don't need any more enemies. Nursing is a tough job, and they feel the need to blow off steam in a safe place. While I understand that, I do not think it should be at the expense of other's suffering, and this is where they go wrong, further habituating patterns of hate, intolerance and bullying amongst themselves. For the record, I think some of them are otherwise pretty good at their job, and no one is wholly good or wholly bad. Some could use an attitude adjustment, but it needs to come in their own time. Remember: 'Hatred never ceases by hatred, but by love alone is healed' - The Buddha.
Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis
Ekua W Brenu, Mieke L van Driel, Donald R Staines, Kevin J Ashton, Sharni L Hardcastle, James Keane, Lotti Tajouri, Daniel Peterson, Sandra B Ramos and Sonya M Marshall-Gradisnik
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Journal of Translational Medicine 2012, 10:88 doi:10.1186/1479-5876-10-88
Published: 9 May 2012
Abstract (provisional)
Background
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is an etiologically unexplained disorder characterised by irregularities in various aspects of the immunological function. Presently, it is unknown whether these immunological changes remain consistent over time. This study investigates Natural Killer (NK) cell cytotoxic activity, NK cell subsets (CD56brightCD16- and CD56dimCD16+) and cytokines, over the course of a12 month period in patients with CFS/ME.
Methods
The participants in the study comprised 65 (47.2+/-11.5 years) CFS/ME participants and 21 (45.2 +/-9.3 years) non-fatigued controls. Flow cytometry protocols were used to assess NK subsets and NK cytotoxic activity at various time points that included baseline (T1), 6 (T2) and 12 months (T3). Cytokine secretions were measured following mitogenic stimulation of peripheral blood mononuclear cells.
Results
NK cytotoxic activity was significantly decreased in the CFS/ME patients at T1, T2 and T3 compared to the non-fatigued group. Additionally, in comparison to the non-fatigued controls, the CFS/ME group had significantly lower numbers of CD56brightCD16- NK cells at both T1 and T2. Interestingly, following mitogenic stimulation, cytokine secretion revealed significant increases in IL-10, IFN-gamma and TNF-alpha at T1 in the CFS/ME group. A significant decrease was observed at T2 in the CFS/ME group for IL-10 and IL-17A while at T3, IL-2 was increased in the CFS/ME group in comparison to the non- fatigued controls. Overall cytotoxic activity was significantly decreased at T3 compared to T1 and T2. CD56brightCD16- NK cells were much lower at T2 compared to the T1 and T3. IL-10 and IL-17A secretion was elevated at T2 in comparison to the T1 and T3.
Conclusion
These results confirm decreases in immune function in CFS/ME patients, suggesting an increased susceptibility to viral and other infections. Furthermore NK cytotoxic activity may be a suitable biomarker for diagnosing CFS/ME as it was consistently decreased during the course of the 12 months study.
The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.
 Becky Luscombe put together this brilliant ME take on the meme flooding the internet as of late. It's spot-on and describes our situation very well to those who still don't get it. Please remember to give Becky credit if you choose to share the image!
via Phoenix rising, by Cort Johnson
Fierce Advocacy: International Awareness Day Founder, Tom Hennessy Talks (May 2008)
The CFS/FM support groups perform a lot of vital functions for CFS/FM patients; they provide advice, physician and legal referrals, emotional support and they advocate for change usually on a bare bones budget. Often run by people who themselves have CFS/FM they are the bread and butter of the CFS/FM community…and there is some fear they are fading. Dr. Bell has referred to the diminishing activity of CFS/FM support groups over time – something he thinks has dangerous implications for the CFS/FM movement as a whole.
In this series we asked the leaders of these organizations to tell us about these bedrocks of the ME/CFS community; how they were formed, what issues they are engaged in, what opportunities and pitfalls they are facing, how they are doing and what they believe are the critical issues facing the ME/CFS community.
Tom Hennessy
The late 1980s and early 1990s were a different era. Chronic fatigue syndrome (ME/CFS) made the cover of Newsweek and major articles appeared in Rolling Stone and major newspapers across the country. CFS support groups sprang up out of nowhere. The first scientific conference on CFS was attended by hundreds of doctors and researchers.
It was a heady time and Tom Hennessey, a former advertising executive with a knack for a bold phrase, stepped up front and center. An ‘in your face’ advocate outraged at the treatment CFS patients were getting Tom would go on to push the medical establishment’s buttons again and again.
Foreseeing the damage the Chronic Fatigue Syndrome name would wreak he demanded, not asked, that the name be changed. In an attempt to unite CFS patients and give them a voice in government he built a ‘virtual’ lobbying organization called RESCIND. A dynamic figure he played a major role in creating Lobby Day, tabbed May 12th as International Chronic Fatigue Syndrome (ME/CFS) Awareness Day, and called for CFS, GWS and FMS organizations to unite together to fight the destructive myths fobbed on each. Known as an ‘angry activist’ Tom turned his barbs both at the government agencies and the many aspects of the CFS community he disagreed with.
Tom’s advocacy efforts were , however, cut short. A severe relapse in the early 1990’s left him bedbound and in horrendous pain and needing to safeguard his increasingly precarious health. Over time RESCIND slowly rescinded into the background and Tom’s influence waned. He stated he hasn’t posted to the main CFS message board, Co-Cure, in over five years. When he does attempt to post his often inflammatory and sometimes profane posts are at times rejected.
This was not always an easy interview for Tom or for me; each session brought pain for him and at times anger for me when I happened to step into the heat of his almost biblical blasts. Tom is nothing if not sure in his beliefs – a surety he still demonstrates with considerable passion. He may or may not be right in his conclusions (or methods) but he had (and still has) a uniquely powerful voice that CFS patients can only rue that this illness has muffled.
What was your background before you came down with chronic fatigue syndrome (ME/CFS)?
Sales and advertising was my job for two decades. I did a national campaign for Subaru that inspired their “official car of the US ski team” that ran for 17 years. I did a program for Marriott hotels that used a Gold Gambits card to use for discounted rooms and upgrades for frequent guests that is still running 25 years later. I was working on a program for BMW to upgrade their customer service when I got sick. I had seen how the Japanese work up close and personal while living in Japan from 1968 to 1972. My BMW friends laughed at me but the Japanese ate BMW’s and Mercedes lunch for the next 15 years.
What happened when you came down with chronic fatigue syndrome (ME/CFS)?
I was a hard charging, full blown Yuppie when I collapsed 20 years ago this month. Just 4 days after the infamous stock market collapse! I had a pretty severe flu but I was still working 12 hours a day, 7 days a week. I was a BMW sales manager in Marin County, California, just over the Golden Gate Bridge. I was making 6 figures and I had a new BMW company car and I was planning to start a computerized database for people to buy and sell cars, boats, motor home and motorcycles – sort of like a dating service for yuppies involving anything with a motor. I had possible investment bankers, several hundred clients – life was great! Except I had constant sore throats, chronic mono, and I just didn’t feel well. I couldn’t get restful sleep.
Then one day, a fellow salesman offered to pay off a loan to me, by taking me out to dinner. We drank a bunch of margaritas and ate ceviche and raw oysters. I went home to sleep it off – the next morning I couldn’t move. I felt like I had been given a Rodney King style beating the night before. I have hardly gotten out of bed again for the past twenty years. The crippling, burning, searing nerve pain is still my worst symptom but with the exception of raccoon eyes (very black deep circles in my eye sockets) and totally atrophied muscles, I don’t look quite as sick as I claim to be.
You had a real knack of being at the right place and the right time with regards to major events. How did your involvement in chronic fatigue syndrome (ME/CFS) advocacy start?
I had been mostly bedridden for 18 months. I was the only male present at a San Francisco group meeting in 1989. I was asked to be a back up speaker at the very first international “CFS” medical conference held on April 15, 1989. After the scheduled male speaker cancelled only 4 days before the conference I was asked to provide a 15 minute speech on what it is like for a lay person to “have CFS”. I ended up talking before about 600 people including all the top research docs and many press and patient advocates.
I had several flip chart pages..and one was the infamous iceberg with only 5% showing above the waterline. I said that there were probably 250,000 homebound or bed bound people with M.E. and that there were probably 500,000 people who were only able to attend work or school part time.
(Editor’s note: Fifteen years later a study indicated that Tom was eerily close in his estimates; the direct economic costs due to CFS in the U.S. were estimated to be 9.1 billion dollars a year.)
I gave an “in your face” speech saying that we are SICK, often deathly ill and we are NOT fatigued!” I said, “if you do NOTHING else today, then lock the doors, get together and knock heads and come up with an ACCURATE definition and CHANGE THE GOD DAMN NAME!”. This got a HUGE response, and all the major media ended up interviewing myself and Melinda Paras, a gay, Latino woman who gave an equally moving and riproaring speech.
Many of the docs and organizers felt that Melinda and I stole their show, but we didn’t ask anyone for an interviews. It was the response from the audience that piqued the interest of the reporters from the Wall Street journal, the New York Times, the LA Times, and many local and national TV reporters. We got front page coverage in some of these papers, and my “career” as an ME advocate was off to the races.
The North Carolina group was represented by Ms. Karen Freese, who was their editor. Their little Chronicle was 4 pages of Xeroxed sheets stapled together. She asked me to be a contributing writer or editor, and I told her that I would be bedridden for months JUST from speaking ONE time at the “CFS” conference.
This really was a different era for us with regard to media exposure. We were a hot item and got a lot of press, we made the cover of Newsweek and Rolling Stone had a major article and you showed up several times on Larry King. How did the Larry King show happen?
It turned out that Cheney and Iverson were delayed on a flight. There was a huge thunderstorm in D.C. and the radar was knocked out at least one of the D.C airports. I had called in when they ran the ads about the show, and said “PLEASE do not say it is all stress, all whiney white women, etc. Tammy Haddad, Larry’s executive producer who I later found out had Lyme disease, called me back and asked if I had a book out. And I said, no, but I do have newspaper articles with my pictures on them. She said “fax them in” and 5 hours later I was on the air.
They invited me back six months later for another show. That one was with Alana Stewart, the ex wife of Rod Stewart and George Hamilton. That show got pretty heated when I claimed that “many of our brave veterans are returning with very similar symptoms as all these ‘alleged whiney white women’ who can NOT handle stress!” I went on to say, that “If these highly educated, mostly male, stunningly victorious soldiers who only fought for four days, could come down with this terrible illness, then maybe the NIH and the CDC will be forced to stop telling lies about it.”
I got TONS of mail from all over the world.
You have a very severe problem with pain. In one conversation with Dr. Alexis Shelekoy in the early 1990′s you noted “I feel like someone has twisted every nerve and fiber in body into braids, then beaten to within an inch of my life, all day, every day of my life. it is brutal beyond imagination”. How is your pain now? What can you do to treat it?
The doctors told me that I was taking MORE pain medicine than a dying cancer patient who’s tumors were crushing his very bones.
I need to take morphine daily to stay alive. For 11 years, I took up to six patches of Fentanyl duragesic patches every three days just to stay alive. The doctors told me that I was taking MORE pain medicine than a dying cancer patient who’s tumors were crushing his very bones.
I asked the doctors and pharmacists, “Do I sound like I am drugged up? Am I not lucid?”, and they replied that I was one of the most articulate patients in their practice and when I was drug tested, it always came back “normal therapeutic levels”. This means that my pain receptors were so inflamed that I really WAS in the excruciating, burning, stinging nerve pain that I claimed to be in.
You had a central hand in creating Lobby Day and you choose May 12th as the day to honor ME/CFS. Tell us how those got started.
I started the concept of Lobby day back in 1988, when I tried to convince Barry Sleight and his wife, Michelle Freeman to join me and enlist my father, the top Lobbyist for J. Paul Getty in Washington, D.C. to work for FREE on our behalf to get Congress involved. The reason I wanted a “lobby day” was because I had seen my father getting abused on a daily basis by Congress calling for a “windfall profits’ tax in good time, but NO bailouts in bad times for oil companies.
ONE stroke of the congressional pen could get us millions of dollars of funding…or get us stricken from getting ANY funds for research at NIH. I knew these facts and that is why I pushed for a lobby day since 1988! I wanted to pick a spring or fall day for our “awareness/lobby” day. Most of us really sick ME patients are too ill to leave our homes most days and we just can’t go outside or on a trip to D.C. in the summer or winter months. I also wanted it to be International. May 12th is still bigger overseas than the US.
I wanted to pick a spring or fall day for our “awareness/lobby” day. Most of us really sick ME patients are too ill to leave our homes most days and we just can’t go outside or on a trip to D.C. in the summer or winter months.
After reading Byron Hyde’s great book on the history of Myalgic Encephalomyelitis, I decided to look up his hero’s Birthday, and lo and behold, May 12th, was Florence Nightingale’s birthday. She was the founder of the first ever school of nursing, and she fought for 35 years for justice for sick soldiers of the Crimean war. She inspired the Swiss Investment banker Mr. Dunant to found the International Red Cross. He did so in HER honor. At the invocation of the IRC he said, “it was the tremendous work of Ms. Florence Nightingale in the Crimea, that inspired me to found this noble organization”.
She put the first elevator into a hospital, so that badly broken and burned soldiers could be put on stretchers and lifted up to the next level without having their wounds made worse by carrying them up steps. she put the first nursing station in the center of each floor, with cords attached to bells, so that fewer nurses could attend to more of the sick and wounded. The injured were instructed to ring the bell IF they needed help, but to leave the nurses alone, if the patients did NOT need immediate help.
She contracted an M.E. type illness (thought to be brucellosis) at age 35 and she was bedridden for the next 50 years. She still had potentates and kings come to her bed for advice, and to pay her homage. She demanded that the lights be low in her room and ONLY one visitor at a time. I decided that her birthday May 12th would be the day.
This Is the 15th anniversary of May 12th this year. You can find more info at www.rescindinc.org.
You founded RESCIND (Repeal Existing Stereotypes for Chronic Immunological and Neurological Disorders) in 1992. What was RESCIND about and what happened with that group?
RESCIND, Inc. was intended to a “virtual” non-profit corporation. People would stay in their own home towns and work to advance our mutual interests in the best way they could. It was designed to be mostly a central web-site/clearing house for information. We would all agree to come together at least ONE day a year for May 12th to Lobby Congress and get the word out to the media that these CIND (Chronic Immunological and Neurological Diseases) were costing our economy tens of billions in lost productivity and billions in medical costs
Sadly, I was too overwhelmed with incoming requests and enthusiasm for both “changing the name of CFS” and getting May 12th off the ground. I pushed too damn hard and collapsed severely in the spring of 1994 after I caught the flu on a flight from Florida. I’ve been disabled and housebound ever since. I’m not alone. Most of the groups that worked on these issues in the 80′s, and 90′s are long gone – all burned out.
The CFS research program was centered, under the leadership of Dr. Straus, in the National Institute of Allergy and Infectious Diseases (NIAID) for many years. It seems like we got off on the wrong foot there – Dr. Straus ended up being no friend to CFS. You met Dr. Straus – what was your recollection of him?
Dr. Strauss called me one afternoon in the spring of 1988 and he was EXTREMELY dismissive and condescending. He started the call of by telling me x that he himself was “very fatigued” from just getting off a plane from Italy where he had been speaking at a conference on AIDS, a REAL disease, (HIS emphasis, not mine). He went on for several minutes about how the newly renamed “CFS” wasn’t even a real disease, and if it was, it would disappear in a few more months, or at the most, a year.
When I told him that I could barely roll over in bed, that I couldn’t often eat solid food, that I often needed to drink through a straw, and that I was too weak to get to the store and purchase the green veggies to make the juice, to drink through that straw….he said, “I don’t have anything to help you with. Sorry, but, hey, GOOD LUCK!” and he hung up on me….
Very early on you were almost prescient about the multidimensional nature of this illness. Most people concentrated on the immune system but you believed it was more complex than that. Tell us about your ‘train track’ theory.
One rail is the immune system, one rail is the central nervous system. The railroad ties are genetic predisposition, pyschological predisposition, how one handles stress, exposure to viruses, exposure to toxins, diet, sleep, physical insult, death of a family member or close friend.
I said that the train engine is your brain, the train cars are your body. if the train hits an area of track where there are some rotten railroad ties, the train can pass over them, IF it slows down, but if you put some BAD fuel in the train and the engine hiccups or bucks as it passes over the rotten part of the railroad ties, it can buck and derail and that the hardest headed, hardest charging workaholics derail the worst.
I was really struck reading Rik Carlson’s excellent book (We Aren’t in Kansas Anymore) of his accounts of his travails trying to maintain his disability benefits from his insurance company. He succeeded for quite some time but in the end had to face the music and allowed them to buy him out. It’s a dark, dark side of the medical establishment. You also had a difficult time getting disability.
It took me 2 and 1/2 years to win my SSI disability case. I had to pay a lawyer 4,000 dollars back in 1989. I had a 4 inches thick file of medical records. My two “case workers” from Social security told the judge that “we are here to protect Mr. Hennessy’s rights”, and then they spent the next hour telling the judge that anyone this smart and this organized could not be disabled as I claimed to be and that the judge should deny my claims. They NEVER said this to my face before the court date. I finally won. Three months later I got my first check but it took two years more before I got Medicare.
Ninety percent of CFS patients get rejected the first time. You need strong diaries and consistent medical records to get to stage II. That takes 6 to 9 months, and then 70% get denied. Then stage III is the ALJ or administrative law judge stage. The system is COMPLETELY stacked against us. I have been labeled as “angry” – damn straight – what the average ME/CFS patient has been through is a crime against humanity.
They put people in vans outside of claimant’s houses and if they find them mowing the lawn they take a video and then go to the judge and say “this guy claims to be disabled, but we have tape of him mowing his lawn”. The judge denies the claim and the person runs out of money and then commits suicide. I have seen this dozens of times with my own eyes.
If anything private insurance is an even darker side of the medical establishment. This is an issue you have a personal experience with and a family connection to.
The big multinational insurance companies have literally billions of dollars invested in portraying us as mentally ill malingerers who are out to defraud them. Our corrupt congress has allowed big donors to write laws that say “if you are physically ill, they have to pay you disability until you are age 65! – but if you are declared MENTALLY ill, they can either deny your claim completely, or just pay you two years TOTAL, and then they can let you starve to death. Rosalynn Carter, President Jimmy Carter’s wife lobbied for parity between mental and physical illness from the early 1970′s. Ted Kennedy has lobbied for this as well and Hillary Clinton. We STILL don’t have it!
We face an uphill battle – these big insurance companies can not afford to pay us 55% of our former salaries for the next 40 years! THAT is why they are trying to get an internationally recognized neurological Disease Myalgic Encephalomyelitis, which has it’s own WHO code, to be thrown out. To the insurance industry, this is a life and death matter.
Many patients claim that “CFS” is ONLY a physical disease; to the insurance industry, it is ONLY a mental disease. I think it is a system wide, total body, mind and body disease but MONEY talks, and Cort, imagine if you were the CEO of a large insurance company and you had THOUSANDS of claims for long term disability and YOUR bonus depended upon how many claims you could AVOID paying, or EVADE paying! You would look for ways to “delay, deny and hope they die!” – just like these people do.
It’s one thing to say insurance companies have an invested interest in making us look like mental cases. It’s quite another to say they’ve manipulated public policy in order to do so. Maybe I’m just naïve in this matter but is there any direct evidence that insurance companies are trying to get myalgic encephalomyelitis reclassified as a mental disorder?
The insurance industry alone has more than 1,000 registered lobbyists. Congressional staffs are overworked all the time and they are in constant search of campaign money and big corporations are there waiting with big checks and they say “it would be really great if law XYZ had these few paragraphs tucked in there somewhere” and if you get those paragraphs in, there is more money were this comes from….
Sad to say, that is the way of the world these days. I have seen it up close and personal for 35 years so it doesn’t even faze me anymore. As I said my dad was the chief lobbyist for J. Paul Getty for more than a decade. But far too many middle Americans still believe in justice, fairness, equitable treatment. Cort, that hasn’t happened in decades, and sadly, it won’t happen anytime soon.
Congress passes very complex and detailed and verbose laws that are FULL of loopholes that often give the exact opposite effect of the name of the bill being passed. An example is the “clean coal act”. They changed the word “waste” to “fill” to get around EPA laws. if the EPA says that it is immoral to allow big coal companies to blow the top off hundreds of mountains and let all the heavy metals and other ‘waste’ ruin downstream rivers for hundreds of miles leaching toxic heavy metals and poisons into the rivers and drinking water of poor people, then they can’t call it “waste”. The word waste triggers all kinds of inspections and re-inspections and filtration plants, and constant water testing, and restocking rivers from all the fish and wildlife killed. So now it’s called ‘fill’.
You were one of the first advocates to propose that advocates for diseases such as ME/CFS, Gulf War Illness and Multiple Chemical Sensitivity gather under a big tent and marshall their efforts and work together. This makes sense to me; all these diseases need better representation and numbers add up to power but that didn’t go over well. What happened?
I came up with the crazy idea in 1991 of trying to link up “whiney white women who can’t handle stress”, with some of the most educated, highly trained, completely voluntary, almost all male US forces returning from the first gulf war. These soldiers wanted NOTHING to do with “CFS”. Many people with MCS want NOTHING to do with FMS, or CFS.
All seemed to fear that the other group will get their research money, their press time, their public sympathy, etc. The infighting is vicious and wears good people out. I was not trying to do anything other than link people with CIND (chronic immunological and neurological diseases) for ONE day per year to lobby the press and Congress for more and better research, and fair treatment.
I recently saw an article about Dr Daniel Clauw who used to practice at Georgetown. His article was titled something like “Overlapping conditions of MCS, FMS, GWS and ME/CFS”. This could have been lifted WORD FOR WORD from my website in 1992! I was hammered relentlessly back then for daring to compare and contrast these disorders. So it goes….
You’ve long been one of our most vociferous voices against the name ‘chronic fatigue syndrome’ . In the first international meeting to discuss the name change in 1989 you said “There are hundreds of thousands if not millions of Americans and millions more worldwide who are left destitute by these terrible diseases. But you will never get the respect, the research dollars, the acceptance of your peers until you change this asinine name. We are tired of being sick, not sick of being tired. And if you do nothing else today, change the God damn name!”
I explained to that audience back in April 1989, that IF they didn’t change the name that very day, and nip this problem in the bud, it would cause a mess for decades and it has. The few ME experts that were on the panel in 1987 refused to sign off on that new definition and were overruled by Strauss and company. Even Tony Komaroff admitted to me after years of my berating him that “Yes, I did vote for the term CFS, Tom, and I have regretted it ever since”.
You like the name myalgic encephalomyelitis and you hate the name chronic fatigue syndrome yet you’re against the proposed name change, ME/CFS by Rich Carson and his backers*. Why is this not a suitable first step toward getting rid of the chronic fatigue syndrome name?
My point is that if you say “ME/CFS”, you KEEP the lousy “CFS” that 90% of patients hate, really despise and then add ME and let the reader chose either -opathy or –it is. The insurance companies will pick -opathy 100% of the time and they will use this to claim we are mentally ill and then use that to deny claims.
I would hazard a guess that the number of patients receiving disability benefits for myalgic encephalomyelitis in the US is vanishingly small. I believe referring to CFS as ME/CFS would only help them while retaining the benefits that CFS does bring; research and social security benefits.. The Name Change Campaign Advisory Panel – Dr. Cheney, Dr. Komaroff, Dr. Jason, Dr. Bell, Dr. Lapp, Dr. De Meirleir, etc. all champions of CFS patients for many years, and all knowledgeable about insurance issues – were very clear on the need to retain CFS in the name and all recommended using myalgic encephalopathy not myalgic encephalomyelitis??
WRONGAMUNDO there Cort. I just explained it to you slowly and in plain English. ME-opathy …WRONG…too damn generic and funds are cut off after two years. BAD idea. Myalgic encephalomyelitis. WHO code for 30 years. Actual neurological illness. We have a petition online with more than 8,000 signatures. I have read tens of thousands of letters from all over the world.
CFS is a pile of crap. It is an artificial construct of some people with tiny brains. It will be looked back upon in history, much like George W. the magnificent, the amiable dunce who currently occupies the White House and CFS does NOT guarantee anyone gets disability. There are only TWO ways you can get social security. You have to be UNABLE to perform any job in the US economy for a minimum of 12 consecutive months OR have an illness that directly leads to your DEATH!
In private disability contracts, there are usually two categories as well; you can either not perform your PAST job for at least 12 consecutive months, or that you are PHYSICALLY disabled and unable to perform any job in the US economy. The big insurance companies do NOT care what the label is. They just don’t want to pay money for decades, when many of us wax and wane with our symptoms. If we were ever paid legitimate benefits, they would go out of business, so they try to paint us as mentally ill malingerers, and the actions of many of us, sure give them LOTS of ammunition to use against us.
Cort it is your newsletter but you could not be more wrong your life depended on it. Please go to my website and scroll down to the M.E. petition and read at least 10 different posts from people who wrote actual paragraphs next to their name. You, Komaroff, Cheney, Bell, all of you have your heads in the sand!
I have been proven correct over time more than almost all of these fools and my friends are dying because of this awful name and if all these $%^%&ing mental midgets change the name to ME/CFS we will no respect from anyone and surely the insurance companies don’t give a shit. They will continue to deny legitimate claims.
You guys are so screwed up. You are like little lobsters sitting in a pot of lukewarm water and the corrupt insurance companies are turning up the heat and the those of us who are smart have been trying to warn you for 20 years!
CFS is already often treated as mental disorder by insurance companies but at least CFS is embedded in the scientific literature and in a Social Security Ruling and in our society. As a disease it’s getting increasingly good press. You’re proposing the name be changed to a condition (nervous system inflammation) the research reflects is not consistently present, that generated almost no research in the fifty years or so it was the name of this disorder and that is perceived in a worse light in Europe than the CFS is in the United State. Yes it has WHO code but that doesn’t seem to have helped much; there’s no essentially no governmental support for non-behavioral research in Europe. So how is changing this diseases name to myalgic encephalomyelitis going to do any good for anybody?
Cort, here is my answer to the “fair name” plan. M.E. it is does have a WHO code as neurological illness. For “CFS” being embedded in anything…it is embedded in misinformation. And it bastardizes any patient cohort it is involved in, and damages or destroys any data set that is used for alleged scientific purposes.
As one doc said, “CFS” can mean whatever you want it to mean. My personal doc has NOT used the term “CFS” on any medical form for me, In the past 7 years. I am NOT proposing a “name change” per se. what I am saying is what MOST patients and true M.E. docs around the world say. ….”We had a great and accurate definition from dr. Melvin Ramsey decades ago.
“Chronic fatigue” has NEVER gotten good press, and it barely gets any press now, good or bad. It is a terrible name, and I said that the emperor had NO clothes, 20 years ago. And they all know in their hearts that I was telling the truth to the powers that be LONG before any else did.
And we don’t need the term “CFS” now. It messes up everything it touches. And good MRI’s can tell that YES, there are signs of inflammation all over the place. And the fact that there is little or no biological research is a crime against humanity! And the name M.E. it is SOUNDS scary! MS (multiple sclerosis) was considered the work of the devil and a women’s weak and neurotic mind for at least 150 years!
The current Democratic congress is working towards a parity between mental and physical illnesses, but so far, nothing has passed. As long as current rules apply, mental illnesses get a MAXIMUM of two years lifetime disability. Virtually NO M.E. patient that I know of who has passed 2 years of disability ever works again. So, this current paradigm is often a ticket to homelessness and death for FAR too many of us.
Social security rulings don’t meant shit. Each case is decided on the merits. SS disability is ONLY paid, if you can not perform ANY job in the US economy for one consecutive year, OR you must have a disability that will directly lead to your death. You can look It up!
We’re going to have to disagree on several things, the importance of the 1999 Social Security ruling, whether or not CFS is getting better press, whether MRI’s have shown inflammation consistent.ly, and whether or not ME/CFS is a better name than CFS but let’s move on. Since we began this interview I heard you were doing better. What’s going on and do you have any plans for RESCIND?
It’s been a brutal 30 years. I started getting double vision back in senior year in college. I was a work hard, party hard kind of guy. I had been bitten by close to 80 fleas in the very first week of senior year – our band had a beach house right on the New England waterfront. It turns out that I contracted what is now called Lyme disease right back then. But no one knew what it was. It seems that “chronic Lyme disease” is really the product of a secret biological weapons program, that got out of control. It turns out that I am positive for babesia, bartonella, lyme burgdorferi, cat scratch fever, as well as heavy metal poisoning, chronic mercury poisoning. severe obstructive sleep apnea, severe neurally mediated hypotension, severe fibromyalgia syndrome and a few other medical conditions.Seven years ago, I found Dr. Alan R. Vinitsky. He has worked slowly and meticulously, month by month to strip away my old mercury fillings, he has gotten me to take clay baths for two years, once a week to leech out old bits of heavy metals in my tissues from my days cleaning oil tankers in the Merchant Marines.
As I told you, my dad was the chief lobbyist for Getty Oil companies worldwide, for the last 10 years of his Getty career. Anywho being the oldest son of this workaholic, I wanted to earn my college tuition. If I worked on a competitors ship I was “allowed” to work the dirtiest job on the ship…since I was one of the “bosses” kids, I got the worst jobs, one of which was cleaning out the bilges an boilers of supertankers…WHILE they were underway.
This got minute specks of black and grey heavy soot and metals into my lungs and then I would take a shower after my shift and I would have black film coming out of my nose, and out of my armpits. (much like a coal miner). It was AWFUL work,. but it paid $17.50 an hour when the minimum wage was less than 2 bucks. In retrospect, I wish I hadn’t taken that job but I did .and i was able to pay my way through college, and not burden my parents with further debt.
About 8 months ago, I was able to start walking a mile a day. …I began to do light stretching … This time, the Ambien worked and I began to get restorative sleep for the first time in 30 years!
I worked my ass off, 7 days a week, 14 hours a day for the next 15 years! I worked TOO hard. and then I partied too hard and with the tiny bits of black metal in my body from the nasty jobs on the oil tankers, and too many bad fillings in my teeth, and four separate types of bacterial infections from my encounter with fleas I was a sitting duck for some other type of insult. and for me, it was the neurotoxins in the raw oysters on the night of October 23, 1987.. As I described to you in my train track analogy, the toxic raw oysters, were probably the last straw that broke the camel’s back.
But, once a week, magnetic clay baths, in pretty warm water, left a black film around the tub, that looked a LOT like the black film that was on my armpits and nose back in my oil tanker days.
I also am taking Chinese herbs, and low dose antibiotics and anti malarial drugs. About 8 months ago, I was able to start walking a mile a day. I got up to one mile in the am and one in the pm…..I began to do light stretching and my doctor gave me an Rx for Ambien for occasional use for re-regulating my sleep. This time, the Ambien worked and I began to get restorative sleep for the first time in 30 years! I wear a chin strap made of neoprene at night…..and I sleep MUCH better now. I go to sleep around 10 pm and I wake up at 6 pm. for 20 years I could only wake up at 6pm and go to bed at 6 am.
I am now working to Revive May 12th, and RESCIND, Inc. and we are working to make our website a portal for advertisers. So, I am quite busy. I don’t plan to be too much of a thorn in the side of the NIH and the CDC, but I will still speak out, when I see blatant injustice.
Charitable Trust to Provide No-Cost ME/CFS & FM Services in New Zealand
ProHealth.com
by Chronic Pain and Fatigue Trust
May 7, 2012
[Ed Note: In particular, this trust's intent to offer no-cost "fieldworkers to provide practical assistance for the severely unwell" should resonate with ME/CFS and FM advocates everywhere this Awareness Day. The Chronic Pain and Fatigue Trust Facebook page is HERE.]
May 7, 2012 NEW ZEALAND:
Fibromyalgia and Chronic Fatigue Syndrome sufferers around the world are looking forward to May 12th 2012 for their international awareness day. The exciting news is that a new charitable trust is launching here in New Zealand on May 10th to provide services for 120,000 - 220,000 people who suffer in this country.
Fibromyalgia (Fibro) and Chronic Fatigue Syndrome (CFS) are extremely debilitating disorders with symptoms such as extreme fatigue (unrelieved by rest), severe headaches, chronic sore throats, body wide muscle pains and spasms, insomnia, severe abdominal pain and nausea.
After 2 years of preparation and building relationships within the health sector, both medical and not for profits, the Chronic Pain and Fatigue Trust is now ready to start providing no cost services to sufferers throughout the country.
Services are aimed at achieving four main priorities;
• Raising awareness and understanding in the community
• Education of medical communities
• Education, self-management and treatment advice and support for those that suffer
• Fieldworkers to provide practical assistance for the severely unwell
The official launch is being held at Rannoch House in Epsom (Thursday 10th May) and is being celebrated by medical professionals, volunteers, other not for profit representatives and local sufferers.
All press are welcome to attend. Canapes and drinks from 6.30 onwards.
Contact Details:
Emma Nielsen
Founder & Chair
Email: Emma@itsreal.org.nz
Phone 09 282 3865; Cell 021 607 661
SLyme Disease
by Amy Tan + FOLLOW
AmyTan.net | August 2003
How a speck changed my life forever
I used to brag that I never got sick. I rarely came down with colds or the flu. I had health insurance for catastrophic illness and only used it once, for surgical repair of a broken leg, the result of heli-skiing, the sport of a vigorous and fearless person.
But in 1999, all that changed. I learned what it is like to have a disease with no diagnosis, to be baffled by what insurance covers and what it does not, and to have a mind that can’t think fast enough to know whether a red traffic light means to press on the gas or hit the brakes. I have late-stage neuroborreliosis, otherwise known as Lyme Disease. The neurological part reflects the fact that the bacteria, a spirochete called borrelia burgdorferi, has gone into my brain.
My case is in many ways typical. Like many, I had little awareness of Lyme disease. I did not think about Lyme because I live in California, at least that’s where I file my taxes. For a good long while, it did not seem significant to me or to others that I also have a home in New York and that I spent weekends in upstate New York. Then again, one does not need to live on the east coast to get Lyme. You can go hiking in the woodlands of Mendocino, Sonoma, Santa Cruz, and the Sierra foothills, just to name a few hiking spots Lyme ticks and I are fond of.
But my particular interloper found me at an outdoor wedding on June 1, 1999. We were in Dutchess County, New York, a place that was lushly bucolic–complete with babbling brook and trees, logs to sit on and cool grass for walking barefoot. Dutchess County, I would learn later, also had the most number of cases of Lyme Disease in the country that year. And the particular swath I was in had had ten times the number of cases as the rest of the county.
The day after the wedding, I saw a bright red rash on my shin. I briefly thought about Lyme disease, but the rash lacked the “bull’s-eye” that most infectious disease doctors say is characteristic of Lyme disease. So no worries! My rash had a tiny black speck in the center, what I assumed was a pinprick-sized blood blister, the result of perhaps a spider bite. I avoided scratching it, and thus, I watched that dot grow more rounded. What I was watching, of course, was a nymph tick feeding on my leg and regurgitating bacteria into me. The black dot fell out but the rash grew larger and brighter red. After a month, light red splotches bloomed on my arms.
The day after I was infected, I had another symptom, a very unusual one for me and unusual for anyone in the summer. I had the aches, pain, and fever of the flu. I had not had the flu in about 15 years and was disappointed my record had come to an end. But within a day, I managed to beat it back, and I never developed respiratory symptoms–no stuffy nose or hacking cough. I thought to myself: What a great immune system I have!
More symptoms crept up, which I passed off as related to stress and airline travel–a stiff neck, insomnia, a constant headache, and a bad back followed by a frozen shoulder. I was often tired and jittery, but that, I reasoned, was the consequence of an active life and too much coffee. Who was I to complain? I had a wonderful life, a great husband, a lovely home, a successful career.
Then my feet grew tingly and became numb. At my annual checkup, I mentioned this to my doctor. She said I had neuropathy, which is not caused by stress. I related that I had developed a strange rash a few months earlier. Could it be relevant? No, my doctor immediately replied.
Like many chronic Lyme disease patients, I was launched into a medical maze, searching for answers as things worsened. I told my husband that something in my body had broken. It was falling apart. I went to specialist after specialist, and each one found some possible cause within his or her specialty. The weirdest symptom was plunging blood sugar, going down to the 20s and 30s, before bouncing back up to normal. That so alarmed my doctors they hospitalized me. An MRI revealed 14 lesions in my frontal and parietal lobes, but my doctors felt that was normal for a person my age; I was 49 at the time.
A CAT scan showed an incidentaloma on my adrenal gland, a small 2 cm tumor. That could be the reason for the blood sugar plunges, the racing heart, the specialist said. It could be benign–or not. An option was presented: I could have CAT scans every six months, at my expense, since my insurance did not cover preventive care. Or I could have my adrenal gland removed laparoscopically on the premise this was the cause of my symptoms, in which case, insurance would cover everything–all my tests so far, the surgery, the follow-up meds. The surgery was supposed to take an hour and a half. But there were complications. The artery to my spleen was accidentally cut off. In the end, the surgery took five hours. I was put on cortisone and the symptoms abated–but only briefly before they worsened and became bizarre.
Now I had hallucinations, what I later learned from a neurologist were simple partial seizures. I saw people walking into the room, two girls jumping rope, numbers spinning on a lit-up odometer, a fat poodle hanging from the ceiling. They disappeared after a minute or so. After the first hallucination, I did not take the others for anything but a weird brain quirk. Most were fairly entertaining. The ones with sudden putrid rat smells were not. But then there were other, more serious seizures, complex partials with an absence of consciousness. My husband said I acted at times as if I were in a trance, eyes wide open as if scared and unresponsive to people around me. I had no memory whatsoever of those episodes, and in fact, at times, my memory of things that happened just before and just after the seizure had been erased.
By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. When I wrote by hand, I reversed letters. When I spoke, I substituted words with like-sounding beginnings. I did not possess any of the skills necessary to write fiction. I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery. Thus, my novel-in-progress lay abandoned between feeble attempts to resuscitate it. At times, when asked what I was writing, to my horror, I could not remember, and I would struggle over the next hour trying to recall the faintest details.
I no longer dared get behind the wheel of a car. When I did venture out on foot, I would sometimes find myself lost in what I knew was a familiar place, my neighborhood of thirty years. Why didn’t that building on the corner look familiar? Why did everything seem as though it were the first time I had been there? I easily became lost in stores, hospitals, hotels, and I would panic, certain I was losing my mind and developing dementia related to early Alzheimer’s. My anxiety was a hundredfold of what was warranted, even in a post 9/11 era. Eventually, I could no longer leave my house alone. In any case, it hurt to walk too far. My muscles were stiff, my knees and hips ached. And I was almost too tired to care anymore.
Let me add here that my doctors were affiliated with major urban hospitals, were tops in their department, well-known, well respected. I liked them. Not once did they raise the idea that I was a hypochondriac. But they also did not raise the possibility of Lyme disease. One doctor, however, gave me a battery of tests, including one called an ELISA. I looked it up and saw it was a screening test for Lyme. There I saw all my symptoms. When the doctor told me the test was negative, I asked him about the accuracy of the test. The doctor said it was impossible for me to get Lyme in California. I said I also lived in New York. He said Lyme was so rare that it was impossible that I had it. In any case, he had not tested me for Lyme, he said. It was the ELISA for another spirochetal infection, syphilis. Wait. He thought I was more likely to have syphilis than Lyme?
I turned to the Internet, which is where doctors believe hypochondriacs catch “terminal” diseases. And there I read more about Lyme, about the inadequacies of the ELISA, especially with late-stage cases, one that is beyond a month since infection. I saw the same rash I had had four years before, read about bizarre symptoms like mine. Further sleuthing gave me the name of a Lyme-literate physician in San Francisco.
My Lyme doctor considered the history of my rash, the summertime flu, the migrating aches and neuropathy, the insomnia and fatigue. He thought lesions in my brain were significant in light of my neurological symptoms. He saw on previous tests that I had some interesting changes in my immune system. He ordered a complete battery of tests from IGeneX, a lab specializing in tick-borne illnesses, to check for not only Lyme disease, but its common co-infections, ehrlichia, babesia, bartonella, all of which can be carried by the same tick that gives you Lyme. Two weeks later, I learned I was positive for Lyme on the Western Blot, as well as on the PCR, (polymerase chain reaction) which can help detect actual DNA “debris” of the tick. My doctor told me that the tests only confirmed what he already knew.
Let me hasten to add that not all chronic Lyme patients test positive on the Western Blot, at least not at the levels set by doctors who follow CDC surveillance criteria as diagnostic. There is much more to be done before the tests can be considered reliable in every lab across the country. Unfortunately, most doctors still go by the old and unreliable standard: that Lyme is rare and exists only on the East Coast, that a bull’s eye rash and fever must be present, that you are tested first with an ELISA, which is considered a false positive if you had no bull’s eye. If you did have the bull’s eye, you must then get a positive Western Blot. That will get you about two weeks of antibiotics. Further insurance coverage of treatment and medications is denied. That is the standard recipe that has destroyed many lives.
Like many late-stage neurological Lyme patients, it took a while for symptoms to begin to lift. A day after starting antibiotic treatment, I became feverish and ill with the classic Jarisch-Herxheimer reaction, which serves as a second confirmation of a spirochetal bacteria infection. A month later, the joint and muscle pain eased up somewhat. Two months, and some of the fog finally lifted, and I frantically wrote for long days, fearful that the curtain would come down again. After six months, I had less muscle stiffness or no joint pain remaining. After two years, I felt I was back to feeling well.
Today, I can once again write fiction, speak at conferences without notes, and walk in my neighborhood alone and without anxiety and panic. I can follow conversations, understand ironies, and tell jokes. I’ve been under treatment since 2003 and consider myself healthy, if healthy means having your life back in all the ways that matter. I still have neuropathy–numbness in my feet, which causes some balance problems. And I have epilepsy for life, due to the 16 lesions in my brain. Yep, 16 and not 14. I added a couple between the first MRI and the MRI done after I was diagnosed, during that period when the bacteria were happily munching on my neural tissue. I also have a sleep disorder that could have me nodding off even when talking and standing on my feet.
I must now take seizure medication for life, as well as medication to keep me awake. Those cost about $2000 a month, most of which is covered by insurance. Insurance will not cover my antibiotics, which I still take. When I've gone off antibiotics, the problems come marching back, one by one, the flu-like symptoms, the headaches, the arthritis. I think about four and a half years of lost time, of pain and panic. I think about our health care crisis. I think how a Lyme-literate physician and about $50 worth of antibiotics early on would have taken care of my disease. None of those other tests--the multiple MRIs, the CAT scans, the 5 hour surgery, the 10 specialists, the lifetime of meds, the required yearly visits to my neurologist–none of those costs would have been necessary. Because of ignorance, I am a burden on the medical care system.
My disease is managed, but I am not cured. Borrelia is a wily spirochete and it, finally, has an identified genotype. And so now we know that with each replication cycle, there are changes to its phenotype here and there. We know that the bacteria can go into different forms, become wolves in sheeps clothing, and evade detection and antibiotics. When I say "we know," I mean, of course, those doctors who are literate on Lyme disease, who don't cling to the notion that Lyme is rare or that the ELISA is accurate no matter how long you've been infected, who don't think that one size of antibiotic fits all.
By “we,” I also mean those who have persistent Lyme and know the enemy still within us. I am aware that the bacteria in me could one day run rampant and that my illness could progress and leave me disabled once again, unable to read, write, think, or walk. It is the reason I am building a house for the future, which will be completely accessible, with wide doorways, handrails, an elevator, level entries and exits to outdoor areas, a roll-in shower, a walk-in bathtub, lower-height counters, and a whole host of other preparations most people would never think would be necessary.
As a patient with persistent Lyme disease, I have joined a club of people with a stigmatized illness, one many doctors do not want to treat. I am lucky to have a doctor who is willing to provide open-ended treatment. I am lucky I have insurance. Most Lyme patients are denied insurance. They are viewed as whacky. They have gone without appropriate care for so long they have lost their health, their jobs, their homes, their marriages, and even their lives.
I now know the greatest harm borrelia has caused. It is ignorance. That ignorance is destroying more and more people as an epidemic grows. Lyme disease is now the fastest-growing vector-born disease in the country. Much more is needed to know how to diagnose it and how to treat it.
In the meantime, my advice to friends and family is to be aware and to be informed. Realize that Lyme disease has been reported in every state in the United State, in Europe, in Asia, every continent except Antarctica. The CDC estimates the actual numbers of those infected each year is at least tenfold of what is documented as confirmed cases. Some Lyme researchers believe the numbers are much, much higher.
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How To Avoid Getting Lyme Ticked
In 1975, Lyme Disease was named after the town of Lyme in Connecticut. People then thought it was a local disease, as if the bacteria resided only there. Today, you could nickname that bacteria after thousands of cities. Where I live, “there is no Lyme”–or so most people would say if you asked. I know otherwise. A friend biked up to the top of Hawk Hill, sat on a wooden log, and picked up a tick. He was positive for Lyme disease. Reporting of Lyme is incomplete, so if you are relying on reports, you are relying on unreliability.
I have found a way to better judge if Lyme is in the area: ask a veterinarian. They know more about Lyme than most doctors I’ve met. If they test for Lyme, they test for co-infections, knowing there is a 50% chance the dog will have at least one co-infection You can also ask people whose dogs run about in the fields and the woods. A couple I met recently said their dogs had both had it repeatedly. Another dog was untreated and died. They feared a neighbor had it as well.
If you are going into an area with deer use insect repellent, one that lasts for, say, 12 hours, and with 30% DEET. UltraThon is a good choice. By the way, 100% DEET does not mean it’s more effective, especially, if it wears off after two hours.
When going into tick country, spray your clothes a few days before with Permethrin. Wear light-colored pants to better see if ticks have glommed onto you for a ride and a snack.
Don’t lean against a tree trunk, marveling how you are one with nature. Nature may be a tick. Don’t sit on logs, wooden benches, stone walls or the ground in tick-infested areas. Ticks love wood surfaces even more than leafy ones. Recognize that Lyme ticks don’t wait until summer to be active. Know where Lyme ticks can hide on you, and sometimes these are not the obvious places you would look. They might be under armpits or the backs of knees, or even in the groin area. And if you are bitten by a tick, save it and send it to be tested. Some say you don’t have worry unless the tick was attached for over 24 or 48 hours. But how do know when the tick first attached itself to you? And why is it that my tick caused me to be sick less than 24 hours later? If you don’t see a bull’s eye around your rash, realize that about 50% of the people diagnosed with Lyme never saw the tick, and over 50% of those who actually had the rash did not see a bull’s eye.
Before you set out to be tested, be aware that the guidelines set by the Infectious Diseases Society of America are those that have left many misdiagnosed and untreated. For an eye-opening view on the politics of Lyme disease and its effect on real and very sick people, go see the film “Under Our Skin,” an award-winning documentary that is as suspenseful as a murder mystery. If you suspect you have been infected, go see a Lyme-literate physician, for example, a member of the International Lyme and Associated Diseases Society, www.ILADS.org. Don’t be put off if your regular doctor raises a skeptical eyebrow. Go to a doctor who will give you the more reliable test, a Western Blot, preferably by a lab like IGeneX.
I wish I knew ten years ago all of the things I’ve just mentioned. If I had, I might have avoided getting bitten. I would not have let a treatable disease turn into a permanent, disabling, and life-changing one.
Be knowledgeable. And if you know someone with Lyme disease, be compassionate.
Advocates,
Please read and help if able. News from Denmark: Danish Board of Health threatens to commit seriously ill ME-patient to a psychiatric hospital. The Danish Board of Health says that the diagnosis of ME is the same as insanity and wants to forcibly remove a 23-year old woman, Karina, from her family home. This could happen as soon as May 2nd. Karina is totally bed-bound, is extremely light and sound sensitive and is too weak to talk. She is so extremely ill that there is a real chance that a move could be fatal. Karina’s parents have been trying to get permission to set up an IV at home to help keep Karina alive, but instead the health department decided that Karina is mentally ill and should be removed. The family has been repeatedly told by Danish doctors that the diagnosis of ME is not recognized. “They do not understand how sick an ME-patient can be with this disease and their ignorance can now have fatal consequences for Karina, “says Rebecca Hansen, Chairman of the ME Association in Denmark. Please help us by spreading this story on-line and to the media. We would like to get journalists interested in writing about it.
Rebecca Hansen can be contacted at icerebel62@hotmail.com
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