Showing posts with label ME. Show all posts
Showing posts with label ME. Show all posts

Saturday, June 18, 2011

The Borrommean Property, ME/CFS and HGRV




The Borrommean Property is exhibited in three entangled circles, in which, if any one is removed the other two are no longer entangled. A less complex, and less useful, way to imagine this is to think of a 3-legged stool that will fall over if one leg is removed.

To reiterate, it takes all three circles, or properties, to manifest the whole. Until the third property is added, the other two manifest nothing as an entity, although they may separately produce manifestations unique to themselves.

This property should not be confused with Torus Circles, which are another way of entangling three circles, but in which two circles remain entangled even if any one is removed.

How This Property Might Apply to ME/CFS
(and other neuroimmune diseases)

Suppose that one theoretical circle represents the class of retroviruses now being called Human Gamma Retroviruses (HGRVs), for lack of a better description. It is possible that other retroviruses, such as the spuma retrovirus, might fulfill the requisites of this circle.

Suppose that another theoretical circle represents a virus from the Herpes Viruses family, such as EBV, herpes simplex, or a half-dozen others, all of which are common infections that the healthy immune system clears, or at least keeps at bay. This family of viruses is also extremely destructive in the immune-compromised person. It is responsible for neuropathy and rare cancers in humans and animals with compromised immune systems.

Suppose that the third circle represents a much larger menu of possibilities. These might include spirochetes such as those thought to cause Lyme disease. It might include environmental toxins such as solvents, herbicides, insecticides, fungal toxins and other virus families. Stress from surgery, traumatic accidents or extremely stressful life events like war, rape or other physical brutality might be factors.

Some Possible Scenarios

1 – Suppose a person is born with an HGRV, forming circle one.

Then a herpes virus invades, subsides and then hides in the lymphatic system of those susceptible to the disease, for whatever reason, forming circle two.

Then something from the third list, say a spirochete infection or exposure to nerve-damaging herbicides such as those derived from Agent Orange (all nerve agents) occurs to link all three.

The last two insults link with the first to cause brain and CNS damage. Depending on the age of the brain and the strengths and weaknesses of the individual's constitution/genetics, several systems of the body are damaged.

Perhaps the HGRVs stop the body from repairing itself in normal time. The fact that they write themselves into human DNA near the stop-start codons might make it possible to slow down the metabolism and/or the speed of natural repairs. This would result in pain (tissues never get completely repaired) and exhaustion (mitochondrial myopathy, unrepaired tissues and disrupted metabolism). You develop classic ME/CFS.

2 - You are born with HGRV and as a baby you are exposed to viruses from list 2 and jabbed with several vaccinations that provoke an immune response. Your HGRV is stimulated to replicate fast and furiously, damaging your immature immune system and your brain. You are diagnosed with autism spectrum disorder.

3 – You have latent HGRV (from birth or from exposure during an outbreak) and latent EBV (or other herpes viruses). You are exposed to toxic mold, have surgery with an anesthetic that is inappropriate for your body or undergo extreme stress that damages your immune system further. You develop ME/CFS, GWS, MS, ALS or other neuroimmune disease.

4 – Same as number 3 but instead of toxins, surgery or stress as the third circle, you are infected with a spirochete from a tick bite. You develop treatment-resistant Lyme, which is actually neuroimmune disease.

Treatment Implications

Treating any one of these symptom-causing organisms may help the body function better and lighten the viral load. As one ME patient has said, it's like carrying around a backpack of rocks. If you treat one virus successfully, it's like tossing out one of the rocks. But lightening the load is not treating the whole disease complex. It does not remove the effect of that second circle; it simply makes it less.

Since we cannot go back in time and remove the latent viruses or remove the insult from the third circle/list, it follows that we need to focus on the first circle, the one that holds the whole entity together: HGRV.

We cannot remove HGRV from our bodies either, but treatment to stop replication and to stop attachment to cells and, possibly to lower the viral reservoirs, is the natural, logical next step in treating this disease.

Balancing the immune system would then help the patient to become more likely to fend off other insults in the future and keep latent viruses and retroviruses latent.

Borrommean Treatment Approach in Neuroimmune Disease

1 – Test for viruses such as the herpes viruses and the dozens of others that have been found at above normal rates in ME/CFS/Neuroimmune Disease. Treat with antiviral drugs. Develop strategies for patients with extreme sensitivity to drugs or their effectiveness. Starting low and raising dosage slowly might be required.

2 – Test and treat for immune abnormalities. Enhance immune function. Low Dose Naltrexone, Ampligen, Oxymatrine are possibilities.

3 - Test and treat for retroviruses. Ampligen, AZT, tenofovir and raltegravir are available now. Develop a protease inhibitor or retrieve from earlier HIV drug investigations.

Fragile patients might need to start with number 2, enhancing the immune system, before ever trying other drugs. Or they might be successful at starting with low doses and working up.

Stronger patients and those who haven't been sick for decades may be able to do all three legs of this three-legged stool at once. As in HIV/AIDS treatment, a drug “cocktail” may be just what the doctor needs to order.

All of these treatments are available now and there are hundreds of thousands of patients who would gladly become the subjects of treatment trials. The risk of injury or death from such treatments pales in comparison to the living death patients experience now.


My “Borrommean” Prayer

I pray that all the fighting factions, whether fighting from ego, greed, stubbornness and/or ignorance will have an attack of conscience, compassion and accountability and begin to think of all aspects of this disease as treatable now.

Blessings

Blessings on those who already have a well-developed conscience, compassion and a sense of accountability.
You know who you are!

This includes all those physicians who are already quietly doing this for patients who have the resources. Of course, it includes the WPI, which will open its translational medicine clinic for neuroimmune diseases on August 1, 2011, at the U of Nevada, Reno, truly an historical moment!



Borromean DNA

Nadrian Seeman has succeeded in making Borromean molecules. As part of his programme to develop techniques in nanotechnology, he makes DNA molecules with prescribed geometric or topological structures. The construction of known DNA knots and links provides useful objects on which to study the action of enzymes, topoisomerases, which change the topology (link type) of molecules. There are more details at the lab website.
  1. Mao, W. Sun, N.C. Seeman, `Construction of Borromean Rings from DNA', Nature 386 (1997) pp137-138.


Friday, January 21, 2011

Open Letter to Dr. Elizabeth Unger, new Chief of Chronic Viral Diseases Branch

January 21, 2011

Dr. Elizabeth Unger
Chief of Chronic Viral Diseases Branch
National Center for Emerging and Zoonotic Infectious Diseases
Division of High Consequence Pathogens and Pathology
Centers for Disease Control and Prevention

Dear Dr. Unger,

Congratulations on your appointment to your new position. I wish you great success. Your future performance in this position will have a huge effect on my future and the futures of millions of Americans and others around the planet.

The only way I could see your future performance as a success would be if you will take the Chronic and Viral Diseases Branch of the National Centers for Emerging and Zoonotic Infectious Diseases in the direction of research into the viral cause(s) of the infectious neuroimmune disease called myalgic encephalomyelitis by the World Health Organization and trivialized by the CDC by calling it “chronic fatigue syndrome” for the last 20 years.

The NIH symbolically extended its middle finger into the faces of “CFS” patients when it moved “CFS” research to the Office of Women's Health, which has no labs, no recognition and no power to do anything positive about this disease. After 8 years of making recommendations to the Secretary of Health, virtually none of those recommendations have been acted upon and for many years, those suggestions have not even been acknowledged. This disease disables children, men and women.

You have it in your power to change the direction of “CFS” research, away from the marketing and public relations attempt to morph it into a form of mental illness – a direction it should never have been forced into by your predecessors. You can get this research, and the taxpayers' investment, back on target, or you can continue the bad faith pseudo-research of those who preceded you. This pseudo-research has benefited only the disability insurance industry - because it enables them to deny disability payments to patients - and the psychiatrists who have captured the field in lieu of any biomedical treatments being sanctioned by CDC.

From the time of the 1984 epidemic outbreak of this disease in Incline Village NV, where the attending physicians had brain scans showing punctate lesions similar to patients with that other infamous, retrovirally caused disease – HIV/AIDS - through the ensuing 27 years, researchers have continued to pile up the evidence that this is a disease caused by one or more viruses. Hundreds of physicians and their patients have noticed for decades that this illness has many of the same symptoms and signs of other viral diseases, such as influenza, chronic Epstein-Barr, and HIV/AIDS.

Yet the CDC called it “mass hysteria” in the 1980's. That was nonsense then and it's still nonsense.

Dr. Harvey Alter of NIH has said recently, if “CFS” is not caused by the retrovirus XMRV and/or related MLVs, it is still obviously a serious biomedical disease with a viral cause and we need to do the research to find out which virus(es) are responsible.

You, Dr. Unger, have the chance to stand on the shoulders of giants like Drs. Alter, Lo and Komaroff, or to sink back into the 19th Century's misogyny and misdiagnosis that views this disease as a mental illness. I fervently hope you will do right by American taxpayers, persons who have ME/CFS and those who care about them.

Sincerely,
Lilly Cooper – American citizen with ME/”CFS” for 29 years

********************************************************************************************

eunger@cdc.gov (Elizabeth Unger)bzb8@cdc.gov (Beth Bell)
txf2@cdc.gov (Tom Frieden)
kathleen.sebelius@hhs.gov
dennis.mangan@nih.gov
francis.collins@nih.gov
anthony.fauci@nih.gov

Saturday, January 8, 2011

New Year’s Resolution: Contract AIDS/HIV

I wanted AIDS for Christmas but I was too sick to seek out someone who could give it to me.

I was too weak to look for unprotected sex. Who would admit to having it let alone be willing to give it to me? I shudder to think how many “exposures” it might take to, ah, “take”.

I've never liked needles, don't know any needle-using drug fiends. I didn't want to get mugged just cruising the kind of area such persons might inhabit.

As I lay in bed in pain and an exhausted stupor, I tried to think up my own Modest Proposal*. I thought about putting an ad in the newspaper, asking for someone with AIDS to come to me. I'd supply needles.

From there, the details get trickier. I would want someone with proof of AIDS. I would want the date of the test to be very recent.

I would also require that he swear he had not begun treatment. I guess I'd have to take his word for that. I would be counting on the fact that it takes a day or two after any test to get the prescription(s) and start taking them. It might even take a month or more for the drugs to have any effect. So maybe I could accept someone with a positive HIV test that was a month old.

Then I tried to think of what I might have to offer in return for the favor.
I'm living on less than $800 a month in disability insurance, so it wouldn't be money. I have codeine for pain. Maybe I could trade a month's worth of pain pills for a month's worth of needling.

I'm not sure just what to needle myself with or just how to do it. Maybe my “provider” will have suggestions. We could just scrape or scratch my skin until it bleeds and then drop a drop of the donor's blood onto my injury. We wouldn't need the needles at all.

Why would I want AIDS?

For the treatment. I would like to take AZT, Viread and Isentress asap. If I had AIDS Medicare would cover treatment and doctor visits. I've done my research and those drugs are pretty safe. Unfortunately, together they cost about $1500 a month.

Why do I want to take antiretroviral drugs? I have myalgic encephalomyelitis, erroneously renamed chronic fatigue syndrome. It has recently been proven to my satisfaction that it is caused by a retrovirus. A lab tested the drugs used to treat AIDS and found these three also treat the retroviruses found in ME/CFS.

The government calls all treatments for ME/CFS experimental, meaning no insurance pays for them. Yet those who can afford to pay for them have experienced great improvement in the few months they have taken them.

It's simple. If I had AIDS I could get treated for ME/CFS.

*1729 satire by Jonathan Swift, suggesting that the starving Irish eat their children

http://www.gutenberg.org/ebooks/1080

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0009948