Monday, September 30, 2013

Mr Magoo - Rest in Peace

My boy Mr. Magoo, was put to rest last Thursday at my vet's office. He fought a hard, cruel battle against Oral Squamous Cell Carcinoma - but finally lost it last week. Magoo was my friend, companion and child for the last 12 years and I miss him terribly. One day I will return to posting on this blog - back in June, I was so excited to write about my latest LDN labs until I noticed Mr Magoo drooling as he watched me type. That is when I found the awful tumor underneath his tongue. Nothing has been the same since then.

Thursday, August 29, 2013

8 Years Later

8 years ago at this moment, the water started coming into my apartment after the shoddy levees constructed by the Corpse of Engineers failed in 58 places. And my mind went into the surreal. Not sure that it ever came back. Of the original 8 cats that shared that time with me, most are still here. Panda and Brooks passed away due to illness and Mama Minx perished months after the storm due to the wild dog packs that ravaged our city streets. 5 of those cats spent two weeks up in a closet without food or water until I could find a man with a boat to bring me to rescue them. I had escaped the house the day after Katrina with 3 cats - Panda, Cayenne and Rosemary. Mr. Magoo, Brooks, Woody, Sky and Tortie Miss are the cats that lived in that closet - the same closet that I escaped the neck high waters in. Mr. Magoo was diagnosed with Oral Squamous Cell Carcinoma two months ago and despite multiple treatments (including LDN) the tumor continues to grow and Magoo is now struggling. It won't be long now until he must pass over to the Rainbow Bridge. But my thoughts today are for the 1800 mostly elderly people who died that day - along with the 100,000 animals who died because they were left behind - and the countless tens of thousands of other ones who drowned in the streets. All due to the failure of the flood walls built by the US Army Corpse of Engineers. Memorial Video

Friday, June 28, 2013

4 Years Normal Liver Tests using Low Dose Naltrexone for HCV!

4 Years Normal Liver Tests using Low Dose Naltrexone for HCV!

I started using 3 mg. Low Dose Naltrexone in Feb/March 2009 and got back my first labs in  June of that year.   My Hepatitis C viral load had been at 1,400,000 and my ALT was at 174 - AST AT 90.   After 3-4 months of being on the LDN, my viral load dropped down to 49,000 and my ALT was at 23 and AST at 30.  That is when I started recording my lab results and progress.

Since that time, every lab test has shown liver enzymes within the normal range (maybe a point off of normal) and my viral load has remained low.

I consider myself as a human guinea pig - or that I have been conducting my own "clinical trial" using LDN to treat my Hep C.  I have more or less been using the same 3 mg. dosage - sometimes taking it every night or as now, taking it every other night.  I have been getting the same prescription from Skip's Pharmacy for the entire time, except at the beginning when I used the prescription that I got from Dr. Berkson - and that pharmacy used lactose as a filler, which did not work for me.  Skip's uses Avicel.

I had new labs done last week and saw my great integrative doctor, Dr. Kashi Rai at "For Better Health."  She has been my doctor since 2007 and is the one who steered me towards Dr. Berkson.  Since then, she has prescribed the LDN as well as ordered whatever labs that I needed for my "trial."  She is also a genius at reading lab work and how to correct any imbalances by using mostly supplements and diet - she will also prescribe medications if the situation warrants - but that is not the case for me. She also suggested that I change my ALA from Metabolic Maintenance (Dr. Berkson's recommendation - or a European sourced Lipoic Acid)  to Jarrow Alpha Lipoic Sustain - 300 with Biotin.   I fought her tooth and nail over this as it would be almost a sacrilege to go against Dr. Berkson!  But, she said that she had seen terrific results in other patients labwork - so I started taking it last November - during the last few months, was only doing 1 daily.  New customers to iHERB can use this code for a discount:  KOV896  -   All labs done since 2007 via Quest Diagnostics:

                                                New Labs June 2013

                                          06/2013                                01/2009

Alpha Fetoprotein -               3.8                                          5.2

White Blood Cell count        5.0                                           6.0

Red Blood Cell count         3.82                                          4.21

Platelet Count                     149                                          186

Urea Nitrogen - BUN           12                                            9

Sodium                              136                                          138

Potassium                         4.3                                            4.6

Chloride                           103                                           103

Calcium                           10.2                                          10.5 (H)

Protein total                      7.2                                           8.9 (H)
Albumin                           4.9                                           5.2 (H)                                                                                               
Globulin                          2.3                                            3.7
Bilirubin                         0.6                                            1.1
Alk Phospatase              54                                              72
AST                              30                                             99(H)
ALT                              31                                             174 (H)

Ferritin                          83  (not been taking IP6)             115

Iron, Total                    122                                            165 (H) 9/2009
Iron Binding Capacity  308                                             352  9/2009                
Saturation                     40                                              36 9/09

HCV RNA                13.393                                        1,280,00

Lymphocytes Subset Panel

                                      06/2013                                09/2009

%CD3 (mature T cells)     76                                       77
Absolute CD3+ cells       1552                                    1008
%CD4(helper cells)          58                                       52
Absolute CD4+cells         1162                                   720
%CD8 suppressor t cells  20                                      24
Absolute CD8 cells          396                                    333
Helper/suppressor ratio    2.94                                  2.17
%CD16+CD56 NK cells   10                                      10
Absolute NK cells 16+56  207                                   128
%CD19 (b cells)               12                                     11
Absolute CD19+             248                                    134
Absolute Lymphocytes   2033                                  1308

TO BE CONTINUED!  bear with me folks - dealing with cat with cancer dx - and trying to post complete labs

Tuesday, June 18, 2013

Low Dose Naltrexone website - Why HCV is not listed?

I recently wrote to the folks who have the Low Dose Naltrexone site and asked why Hep C is not among the conditions listed that improve with the use of LDN. And this is what I was told:

We were delighted to hear of your excellent control of Hep C using LDN alone.   The reason why Hep C is not on our list relates to Dr. Bihari's past experience in his active practice (Bihari was the discoverer of the human uses of LDN). He did not have your experience with dozens of his patients who were being seen for HIV (and thus were all on LDN) but who also had Hep C.

He did use LDN in the therapy of Hep C, BUT only as a secondary treatment.Hypericin and LDN for Hepatitis C.

Hypericin and LDN for Hepatitis C

"In a study of St. John's Wort in 15 patients with HIV in 1990, Dr.Bihari had accidentally discovered a significant benefit to liver function in two patients with hepatitis B (whereas there was no improvement in HIV markers). Bihari then began to use St. John's Wort in his private practice to treat hepatitis B and hepatitis C - patients with the latter responded well, the former not at all. Since 1995, Dr. Bihari has been able to use a very highly concentrated form of hypericin, the active ingredient found in St. John's Wort, called HY2 (manufactured by Pacific Biologic in Clayton, CA; 800-869-8783) in the treatment of people with hepatitis C. It is given along with LDN, to enhance the immune response, and in many cases with ribavirin, as an antiviral. Over 60 patients have been successfully treated for hepatitis C in Dr. Bihari's practice. (but what does this mean?)

Dr. Bernard Bihari has put out the results of an interesting observational study he conducted through his practice in New York. The study involved fifteen people with Hepatitis C, seven of whom are also HIV+. Each day, participants took between 2 and 7 capsules of HY2 (depending on each person's ability to tolerate the HY2) and 3mg of naltrexone (ReVia), an opiate blocker. HY2 is a form of St. John's Wort, a naturally occurring herb. Hypericin, a chemical derived from St. John's Wort, has shown strong anti-viral activity in the test tube against a wide variety of viruses. Each capsule of the HY2 used by Dr. Bihari's patients contains 750mg of St. John's Wort, with a 220% increase in hypericin content (2.25mg hypericin) over standard St. John's Wort preparations. This same HY2 is available at the PWA Health Group.

Dr. Bihari has followed his patients for up to two years. In almost all cases, Dr. Bihari's patients' latest lab reports show normal or close-to-normal AST and ALT results. These tests measure the levels of enzymes produced by the liver. The elevated enzymes which all of the participants had at the beginning of the study are usually an indication of liver inflammation or damage. Many study participants were using milk thistle and/or thioctic (lipoic) acid, popular supplements that enhance liver function. Four participants added ribavirin to their regimens.

With these additional, varied therapies, and even the naltrexone, many questions remain. How much the HY2 contributed to people's successful drop in liver enzymes isn't entirely clear.

One person who stopped taking HY2 and took regular St. John's Wort instead showed an increase in enzymes until he went back to the HY2. When two other study participants stopped their regimens for a while, their enzymes shot up, then decreased again after going back on the regimen. We know that taking ribavirin alone can sharply decrease liver enzymes; but when you stop ribavirin, enzymes pop back up. The same seems to be true of HY2 and the other treatments Dr. Bihari's patients are using. It may be helpful to give your liver a break for a period of time.(?) But we don't know yet what will happen once these folks stop their regimen completely or whether anyone's virus will clear.

The experience was interesting but half of his patients were also coinfected with HIV and there really isn't much of a followup - I wonder if any of them achieved SVR? It doesn't seem so.  I wrote back to the LDN website folks to let them know that I was disappointed that LDN for HCV was not listed as a condition treatable based on Bihari's study on 15 people.

On another note,  George Henderson recently posted about Spirulina and how it brought about SVR in some HCV folks who were using it - I love George!!!!!   He is so far ahead of the rest of us.

Spirulina Platensis versus Silymarin in the treatment of chronic hepatitis C virus infection. A pilot randomized, comparative clinical trial.

Among the 30 patients who had been treated with Spirulina and completed the 6 months protocol, 4 patients (13.3%) had a complete end of treatment virological response. While 2 patients (6.7%) had partial end of treatment response defined as significant decrease of virus load of at least 2-log10 at the end of 6 months treatment. No virological response (non-ETR) (defined as no reduction of at least 2 logs10 from the baseline virus load) was reported in the remaining 80% of Spirulina treated group.   The High-fat Hep C Diet  

  So perhaps some of you might want to try adding Hypericin (and not just "regular" St. John's wart to their regimen along with Spirulina and report back? If I had the bucks, maybe I would again be the guinea pig as I have been with LDN - hell, with over 4 years of NORMAL LIVER ENYZMES and over 4 years of LAB RESULTS via QUEST LABS - and over 4 years of using the same 3 mg  capsules of LDN provided by Skip's Pharmacy -  I should qualify for a "clinical trial?"

Monday, June 17, 2013

Low Dose Naltrexone for Pets


There is a yahoo support group called "LDN for Pets" - It has much info on using LDN for cats, dogs and horses - and I imagine other critters as well.

Dr. Skip (Skip's Pharmacy - one of the best LDN compounding pharmacy!) is part of the community and knows much about proper dosing.  And some of the members have much experience with using LDN on their own pets.

For those who are interested, the proper dose of LDN is very small and the formula is this:

.03 mg. x weight

BTW - one can obtain Naltrexone 50mg without a prescription via:

I had tried using LDN on one of my cats a few years back - I am not sure that it helped because I did not use it regularly on Panda - I had just started using it myself.  Plus, she had carcinoma of the ear that had already spread to her brain so it was probably already too late.   And indeed, if one does a search on the web for "LDN for Cats" there are a few folks who did try using it on their own cats.  With not much success - however,  all of the cats were already close to end stage in the various disorders that they had.   Again, LDN as a "last ditch" resort to a crucial problem - so many people have turned to it for the same reason - traditional medicine no longer works for them or never did.

New Orleans has become a very expensive place to live - we have the highest car insurance rates in the country - perhaps the world.  Our utitlities are sky high as well as water bills.  Housing is through the roof - no wonder we have such a high homeless rate here.

I have been struggling for years to get by - lately things have been really bad - and of course the time that a few of my cats have become quite ill.  And are now 12-15 years old.  I was able to take one cat to the vet and am still paying on the $207.00 bill.  My heart is breaking because Mr. Magoo has hyperthesia - he is very sensitive to touch and has ripped a lot of his fur out.  He needs desperately to go to the vet for labwork to try and figure out what underlying condition(s) might have brought this on.  He has always been on a high quality diet - with no grains whatsoever. And he was always a cat who loved the slicker brush and zoom groom - not anymore.   My holistic vet is trying to help - Magoo is currently on antibiotics (as are two other cats in the house) as well as homeopathic remedies - nux vomic and hypericum, which do seem to help him.

I made the decision to start him on LDN the other night -  I only gave him .01 mg the first night and upped it to .02 the next night - he is a big guy @14 pounds so his goal dosage will be 0.39 mg.  We will see how it goes. He seems a bit more nervous today so I will try every other night dosing at 02 for a time - see how it goes and then work our way up.  Hopefully, he will be able to have labs sometime soon.

Of course, I would recommend to everyone who wants to start their own pet on  LDN, to have labs done first and to let their vet know what you plan to do.   As I do not have enough money for toilet tissue at the moment, I cannot do it.  So I am using one of my last five 3mg LDN capsules to give to Magoo.   In a dark vial, dump in the capsule - add 3ml (same as mg) of bottled or distilled water - and shake.  Draw up required amount in syringe and give to pet.  Same if one has other strengths of LDN capsules or a 50mg tab - but use 50ml of water. Use the same amount of water as the mg of ldn used.  Keep in fridge - it will keep a long time.

I will update on Magoo's progress as we go along - I am hoping that it will help and that I am not too late in starting to treat whatever the poor guy has.  He is one of the 5 cats that survived for two weeks without food or water following the levee breaches after Katrina - all of those cats are heroes to me as well as being my "children"  -  I cannot tell you the stress and heartbreak that his illness has brought to me.   Again, the LDN is what has kept me going and I pray that it will do the same for Magoo.

NIGHTMARE -  Last Thursday, after noting that Magoo was drooling,  I pried open his mouth and found a nasty tumor underneath his tongue.  Extremely shocking and very sad finding - and after finally getting an appointment for him for exam and labs - this.   And feeling like an idiot that I did not see it earlier - I had been in his mouth 3 times daily for a couple of months.

Awaiting holistic vet's call - she briefly looked at it on Friday.  She wants to try and shrink it before doing anything else - trying Thuja - 1M and 50M.   Meanwhile, I let Magoo skip a couple of days of the LDN - I am so afraid of cell proliferation with this.   However, after spending hours upon hours reading about this insidious disease, and how almost all cases end badly,  I figure that Magoo has nothing to lose with the LDN.  Started over last night with 0.15 mg and will go to every night dosing of 0.20 tonight.  The less is more approach obviously did not work for him -  well, hopefully, we will know more once the poor guy has lab work -  I am devastated over this - Goo is my boy - a sweet sweet spirit.    Playing this poverty game might have cost him his life.


Vet visit for labs and xray show clean scans and normal liver & kidney function tests. Slightly enlarged heart and liver.   Elevated white blood cells because of UTI.   Tumor that looked red and ragged last week now looks more pink with smooth edges.  Vet thinks might have shot that it is lymph related and not SCC.  On antibiotics for 8 days and then see how he is - then, if still needed, go to another vet for biopsy.

Been syringing his mouth with calendula and grapefruit seed extract mixed with bottled water several times a day.  0.02 LDN almost every night.  Vet not thrilled but did write Magoo a script for liquid LDN that will be filled at Skip's Pharmacy.  And as Magoo weighs in at 15-16 pounds, his correct LDN dose is more like 0.45 mg.  But again, less is more with LDN, particularly in those with impaired liver function.  So keeping fingers and paws crossed that it is not SCC!!!!!!

Thursday, May 9, 2013

Ditch the Gluten!

Other than using Low Dose Naltrexone, eliminating gluten grains was the most helpful thing that I have ever done for my health.  As mentioned earlier on this blog, at one time I was almost house-bound due to horrible IBD (and chronic diarrhea in the mornings) - chemical sensitivities - fibro - and bloating to the point that I looked like I was expecting.  And even in my younger days, I refused to wear two piece bathing suits as I always had a "puffy tummy" despite being fit and thin.  

Below is a great site and a great article by Nora Gedgaudas - it has been published in her book as well as in the Wellness Journal - this is from her blog.

Just what is Gluten, anyway?

Gluten (the Latin word for “glue”), is a substance found in numerous grains such as wheat (durum, semolina, spelt, kamut, rye, triticale and barley). It is typically present in oats, too, due mainly to modern processing methods. Small amounts of gliadin-related compounds and gluten contamination are also present in corn products and corn starch. All foods with any form of gluten content should be considered suspect. This includes all cereal grains such as wheat/triticale/durum/semolina/spelt/ kamut (gliadin), rye (secalin), barley (hordein), corn (zein) and oats (avenin). What is called “gluten” is actually made up of hundreds of peptides. The only one actually tested for is gliadin, which itself is made up of twelve different fractions. The only fraction of gliadin currently tested for is alpha-gliadin, which leaves considerable margin for error in the form of false negatives. If you happen to be sensitive to a fraction of gliadin other than alpha-gliadin then you will likely test negative for “gluten sensitivity”. This is deeply problematic. Gliadin in some form exists in most grains. Wheat, durum, spelt, tritiale, baley, and rye are members of a family of grains having the most pronounced antigenic effects on those sensitive to gluten, though all grains (including rice) contain some form of gluten. The gluten in these other grains may or may not be significantly problematic, though a general avoidance of dietary grains for numerous reasons (outlined in detail in my book, Primal Body-Primal Mind) is probably a good idea.

Gluten, used in baking it gives bread dough its elasticity and baked goods their fluffiness and chewiness. It is also used as an additive and stabilizing agent in innumerable processed foods and personal care products. Insanely, gluten is nearly everywhere. Laws do not require its labeling on all products so the consumer is left to judge for themselves whether gluten may be an additive or not. I, personally, don’t trust any product that isn’t clearly labeled “gluten free”.

For us humans, where we have spent nearly all of the last 2.6 million years as hunter-gatherers, gluten (and its closely related compounds) is a very new inclusion to the diet and is very difficult for us to digest. To say that gluten can add complications to your health is putting things mildly. Problems with gluten are becoming literally epidemic and although public awareness about this issue is certainly growing there is more that is poorly understood by most than not. The consequences of gluten sensitivity (diagnosed or undiagnosed) can literally be lethal. And, no, I am not being “extreme” when I say this. The consequences are very real.

Although commonly associated with celiac disease many do not appreciate gluten’s potentially incredible impact on the health of countless individuals or the commonality with which people may be afflicted with non-celiac “gluten sensitivity”. In fact, gluten may well be at the silent root of a great many of the health challenges millions of people face today, both physical and mental. It is rarely suspected as the underlying culprit in most instances, however. Furthermore, the inherent presence of what are called exorphins in grains (morphine-like compounds) make gluten-containing grains quite addictive and leave many in frank denial of the havoc it can wreak (including also quite possibly my “mystery critic”).

Allow me to elaborate:

A 2009 study in the Journal of the American Medical Association (JAMA Sept 16; 302(11):1171-8) found that those with celiac disease and/or gluten sensitivity, whether diagnosed or undiagnosed had a significantly higher risk of death, particularly from heart disease and cancer. It is currently estimated (conservatively) that one in every 200 people suffers from celiac disease, a devastating consequence of gluten-containing grain consumption. Some more recently hypothesize that this number may be closer to one in 30. Gluten “sensitivity” (vs. celiac disease) is considerably much more common and is currently nearly epidemic in its scope. The effects of and markedly increased mortality risks associated with both full blown celiac disease and gluten sensitivity happen to be virtually identical. Both are autoimmune conditions that create inflammation and immune system effects throughout the body. They can affect all organ systems (including your brain, heart, kidneys, etc.), your nervous system, your immunological functioning, your digestive system and even your musculoskeletal system. –Almost literally everything from your hair follicles down to your toenails and everything in-between. Exposure to gluten in a sensitive individual essentially shuts down blood flow to the prefrontal cortex—the part of our brains that allow us to focus, manage emotional states, plan and organize and exercise our short term memory. The prefrontal cortex is our brain’s “executive function” control center and is the part of our brain that basically makes us the most human. The inflammatory response invoked by gluten exposure additionally activates the brain’s microglial cells, which have no built in inhibitory mechanisms and do not readily wind down again. It can literally take months. Additionally, these periods of hypoperfusion followed by reperfusion can be quite damaging (much the way heart muscle cells typically die following reperfusion after the ischemia of a heart attack). The damage and neural degeneration this can cause over time, together with sympathetic (“fight or flight”) nervous system over-arousal can be significant. The damage and neural degeneration this can cause over time, together with sympathetic (“fight or flight”) nervous system over-arousal can be significant.

In routine blood tests, seeing chronic states of anemia (serum iron below 85 ug/dL and hemoglobin below 13.5), functionally depressed or elevated serum protein levels (below 6.9 or above 7.4 G/dL), unusually depressed triglycerides (below 75 mg/dL–especially where carbs play a significant dietary role) and/or alkaline phosphatase levels (significantly below 70 U/L), functionally depressed BUN (below 13 mg/dL), abnormally high HDL (in excess of 75 mg/dL) and/or chronically (even functionally) elevated liver enzymes, among other chronic inflammatory and malabsorptive markers although not diagnostic here can be cause–especially when found in combination with one another–for possible suspicion. It takes further testing to be sure–though even some of the best testing methods can vary greatly in their accuracy.

Gluten can also be looked upon somewhat as a bit of as “gateway food sensitivity”. It is known to increase an enzyme in the body known as zonulin, which controls intestinal permeability. Elevated zonulin levels in the presence of gluten can also serve to allow other types of undigested proteins to slip past what would otherwise be more selectively permeable barriers and cause additional immunological reactions to other foods. Casein (milk protein) is the most common co-sensitivity with gluten, but the immune system can come to react to almost anything if gluten consumption persists. This can be a very real problem. Once multiple food sensitivities take over it can amount to a very vicious cycle that only worsens with time and becomes extremely difficult to correct. Living with this can be miserable at best.

A study published in 2009 in the peer reviewed journal, Gastroenterology (July;137(1):88-93) compared 10,000 available blood samples from individuals 50 years ago to 10,000 people today and found that there has been a 400% increase in the incidence of full blown celiac disease (defined by conventional medicine as a total villous atrophy of the small intestine)! Changes made to American strains of wheat, giving them much higher gluten content is likely a significant part of the problem. Increased genetic susceptibility due to a variety of causes is likely another. According to the Journal of Gastroenterology fully 30-50% of all people carry the gene for celiac disease (known as HLA-DQ8 or HLA-DQ2)–and eight times more people with celiac disease have no GI symptoms than do. Gluten sensitivity genes are significantly more common (HLA-DQB1, Alleles 1 and/or 2).

Gluten containing grains include wheat (e.g., durum, graham, semolina, kamut, spelt), as well as rye, barley, oats and triticale. Although oats technically are not part of the gliadin-containing family of grains, modern methods of processing nearly always ensure gluten contamination of oat products and the presence of actual gluten should always be assumed unless labeled “100% gluten free”. The prolamin (avenin) content of oats, however, still makes them at least potentially suspect for inherent sensitivity issues.

Fully 99% of those who suffer from this entirely curable and potentially lethal condition do so completely unaware of the dangerous vulnerability within themselves. Although a biopsy of the small intestine is commonly used to diagnose celiac disease, fully seven out of ten celiac sufferers exhibit no intestinal or GI symptoms at all. In fact, an article in the journal Neurology (Vol 56/No.3 Feb 13, 2005) states that “Gluten sensitivity can be primarily and at times exclusively a neurological disease”, affecting not only the brain and nervous system directly, but also cognitive and psychiatric illness. In the Journal of Neurology, Neurosurgery and Psychiatry (1997; 63; 770-775) an article states “Our finding…implies that immune response triggered by sensitivity to gluten may find expression in organs other than the gut; and the central and peripheral nervous systems are particularly susceptible.”

A 2002 review paper in the New England Journal of Medicine (Jan 17; 346(3):180-188) found that fully 55 diseases are known to be caused by gluten. These partly include heart disease, cancer, nearly all autoimmune diseases, osteoporosis, irritable bowel syndrome, as well as many common psychiatric illnesses, partly including anxiety issues, ADD, bipolar disorder, depression dementia, schizophrenia, Hashimoto’s (autoimmune thyroid disorders), migraines, epilepsy, Parkinson’s, ALS, neuropathies (having normal EMG), and most other degenerative neurological disorders…as well as Autism, which is technically an autoimmune brain disorder. In my opinion, it is always safest to assume the presence of gluten sensitivity in these populations, or frankly wherever significantly compromised health is an issue.

Testing for gluten sensitivity

Although there are numerous methods for assessing gluten sensitivity and/or celiac disease, most are unfortunately somewhat unreliable in their accuracy (including the so-called “gold standard” approach of intestinal biopsy), which may be partly why so few are properly diagnosed even when testing is sought out. With respect to blood and salivary testing, out of 12 different sub-fractions of gliadin, for instance, typically only one—alpha-gliadin—is ever tested for. If you happen to have a sensitivity for any of the eleven other forms of gliadin it might not ever show. False negatives are a notorious part of this type of testing, unfortunately. Accuracy (where negative results are concerned) is never 100%. Immunoglobulin testing for food sensitivities in those with autoimmune disorders and particularly Hashimoto’s are almost always skewed due to chronic imbalances of TH-1 (T-cell) and TH-2 (B-cell) immune response. It’s critical to look for multiple markers (although the overwhelming—nearly 100% association between gluten sensitivity and Hashimoto’s and most other autoimmune disorders make the automatic assumption of gluten sensitivity a good idea). The most important tests to run are IgA (anti-gliadin antibodies and anti-entomysial antibodies), IgG (anti-gliadin antibodies), IgM, antibodies, tissue transglutaminase antibodies, which is most associated with small intestine villous atrophy (IgA and IgG), gluten antibodies, total IgA antibodies and if possible, always test for the presence of genes’ HLA-DQ2 and HLA-DQ8, as well as HLA-DQB1, Alleles 1 and 2. I’ve seen individuals test negative for antibodies in blood, salivary and even the most accurate stool antigen tests (again, false negatives are quite common) but they then test positive for both pairs of celiac or gluten sensitivity genes…meaning one can basically take the diagnosis of celiac or gluten sensitivity to the bank. I’ve found that by far the most accurate assessment may be made by using a proprietary stool antibody test from EnteroLab ( Their Web site also contains extremely helpful information on the subject and includes accurate testing for other major common food sensitivities as well. Getting the additional genetic markers for gluten sensitivity and predisposition potential for celiac disease that they offer helps minimize false negatives. In time, there will likely be new and hopefully even more accurate diagnostic methods developed as studies demonstrating the devastating health impacts of gluten mount. For now, EnteroLab seems to have the best corner on the market for accuracy, demonstrating a six-fold greater accuracy rate than available blood antigen tests. Otherwise, elimination diets, and/or testing for multiple markers using blood sampling are probably the next best bet.

In October of 2010 a new standard of excellence in testing for gluten sensitivity via affordable salivary panels covering not one but ALL fractions of gliadin–with an unprecedented 92-96% accuracy rate–will become available via Cyrex Labs ( To quote the site, itself, “Cyrex™ is an advanced clinical laboratory developing and offering cutting-edge tests based on the latest scientific advances in the field of immunology. These tests cover mucosal, cellular, and humoral immunology and specialize in antibody arrays for complex thyroid, gluten, and other food-associated autoimmunities and related neurodysregulation.” Make no mistake about it, Cyrex Labs WILL revolutionize the entire field of immunology.

Elimination diets can be an effective means of determining the potential for gluten sensitivity, but must be strictly adhered to for no less than 2-3 weeks and ideally at least 6-8 months to make a genuinely clear determination. Avoidance of gluten must be no less than 100% from all (even hidden sources) and not so much as even a single crumb of bread or trace contamination. Also, beware of cross contamination issues—where non-gluten foods may come into contact with gluten-containing foods via cooking/preparation surfaces and utensils in restaurants or at home (yes—this matters). The inflammatory effects of even trace gluten exposure in the brain especially and throughout the body can reverberate fully 6 months or more in sensitive individuals. Any exposure of any kind (even seemingly innocuous unintentional slip-ups) means you must start over with the time spent on the elimination diet. Sorry to sound so dramatic, but this is an issue that needs to be taken extremely seriously. Gastroenterology (2009; 137:88-93) states that “During a 45 year follow up, undiagnosed celiac disease was associated with a nearly 4-fold increased risk of death. The prevalence of undiagnosed CD seems to have increased dramatically in the United States during the last 50 years.” In an individual with either full blown celiac or gluten sensitivity the risk of death from all causes, according to the journal Lancet (Vol 358, August 4, 2001) was dramatically greater: “Death was most significantly affected by diagnostic delay, pattern of presentation, and adherence to the gluten free diet…Non adherence to the gluten free diet, defined as eating gluten once-per-month increased the relative risk of death 600%.” Next time you want to rationalize that “one little piece of bread” –think twice.

Being “mostly gluten free” or imbibing in gluten-containing foods “only occasionally” just doesn’t cut it. In the case of diagnosed or undiagnosed gluten sensitivity or celiac disease the popular mantra of “all things in moderation” can literally be deadly.

Brain and mood disorders, migraines, osteoporosis, diabetes, cardiovascular diseases, bowel diseases, autoimmune diseases, inflammatory disorders and cancer are rampant. Grains are rarely suspected as the original culprit, though every one of these disorders, among many more, can potentially be traced to often-insidious gluten intolerance. Gluten sensitivity is only rarely obvious to the afflicted, and many are even entirely surprised to learn they have this sensitivity. I know I was.

Only an estimated 1% of all suffering gluten sensitivity or celiac disease is ever diagnosed.

The good news is that the devastating symptoms of gluten sensitivity and celiac disease are often entirely curable. –The treatment solution? You MUST eliminate 100%–not just “most”–gluten from your diet, including not just gluten containing dietary grains but all hidden sources, as well, which can include (but are not limited to) soups, broths, processed food mixes and soy sauce, teriyaki and other sauces, corn products and corn starch, and salad dressings. Even buckwheat and soy flours are commonly contaminated with highly significant amounts of gluten due to modern processing methods. Gluten can be cryptically listed on food labels as vegetable protein, seitan, hydrolyzed vegetable protein, modified food starch and others. Gluten is even an ingredient in many shampoos, cosmetics and lipsticks (which can potentially absorb transdermally–through the skin), children’s Play-Doh, medications, vitamins (unless specifically labeled “gluten free”)–even non self-adhesive stamps and envelopes.

Although I realize all this need for ultra-strict avoidance sounds rather tedious and extreme, an article in the Journal of Neurology, Neurosurgery and Psychiatry (1997; 63; 770-775) states clearly: “Even minute traces of gliadin (gluten) are capable of triggering a state of heightened immunological activity in gluten sensitive people”, meaning prolonged inflammation and other symptoms. Saying you’ve eliminated “most” gluten from your diet is a bit like saying you’re just “a little bit pregnant”. Either you are or you’re not. There are NO in-betweens. Avoidance must be strict…and total.

Many people will claim they have been adhering to a strict gluten-free diet when, in fact, they have only been avoiding the obvious sources and really haven’t been paying attention enough to potentially hidden sources, including their personal care products. They will eventually rationalize their lack of positive health results to the idea that they weren’t gluten sensitive after all and they simply go back to eating whatever they want. This is a HUGE mistake! Even where adherence to a genuinely gluten free diet doesn’t seem to generate expected turnarounds in health and well being, you have at least removed one very major hurdle to improvement. There can always be other hurdles yet to conquer, not the least of which is the task of winding down GI/neurological inflammation and healing intestinal permeability (the subject perhaps of another article yet to come). Gluten is by far not the only modern substance challenging the health of the masses. Restoring health can be like peeling back the layers of an onion. It is a process. Still, often enough, by simply removing this one major dietary antigen the turnaround in some people can seem nothing short of miraculous. It can also make a massive difference where seemingly more benign issues like resistant weight loss may be concerned.

Wait just a minute, back up—did you just say “personal care products”? What???

Crazy sounding, but true. You need to examine your shampoos, conditioners and other hair care and skin care products for the presence of wheat protein, sometimes also listed as “hydrolyzed vegetable protein”. Look for corn-related additives, also.
While you’re at it, you might also want to consider avoiding toxic additives like parabens, pthlates, artificial fragrances, sodium laurel sulfate, methylisothiazolinone (MIT), and petroleum derivatives like mineral oil, toluene, petrolatum and paraffin (slightly off-topic, but extremely noteworthy, nonetheless). Note that the FDA does nothing to ensure the safety of any chemical used in personal care products, so you’re left to trust the manufacturer. Even the FDA states: “Cosmetic products and ingredients are not subject to FDA premarket approval authority, with the exception of color additives … Cosmetic firms are responsible for substantiating the safety of their products and ingredients before marketing.” Out of roughly 126 or more chemicals consumers regularly apply to their skin, 90% have never, ever been tested for their safety. Most people think nothing of the products they apply on their hair or skin and the cosmetics industry readily capitalizes on this ignorance at tremendous potential cost to your health for considerable profit.

Why is this important? I mean, we’re just talking about skin, right? It’s not like you’re drinking the stuff…

In fact, it’s probably worse.

Keep in mind that your skin is your largest organ and that it is exceedingly thin (less than 1/10th of an inch in thickness) and permeable. If you were to eat or drink these products you’d have several things come into play to help protect you from direct bloodstream exposure—your gut lining, hydrochloric acid, enzymes, etc. In a hot shower, however, with your pores open wide, there is very little between you and direct absorption of anything you are applying to your scalp and skin right into your bloodstream where it is all free to travel throughout your body to your brain and all your other organs. These compounds may also even be inhaled with the shower’s steam. The concern here is very real. When you’re reading hair and skin care labels it’s a good idea to ask yourself whether you would be willing to actually drink the contents of that product or not. If you’re reading a list of a whole lot of difficult-to-pronounce chemicals and/or also seeing wheat protein/vegetable protein on the label you’d do well to think twice about using it. –And don’t let buzzwords like “organic” or “natural” fool you. A partial listing of product sources can be found at Another source for allergen-free hair and skin care products is Just Google “gluten and additive-free hair and skin-care products” in your computer’s browser. The potential selection is huge. If you happen to have a smart phone there are also numerous available “gluten-free apps” available to help you screen individual products, restaurants, grocery stores and other shopping sources at your fingertips. The good news is that the awareness of these issues is rapidly spreading and resources are likely to grow exponentially in the very near time to come.

So what about gluten-free “substitutes”?

Seeking out gluten-free substitutes is certainly an option, as there are scores of “gluten-free” products of all kinds available today. It’s big business for food manufacturers these days, in fact. Clearly, gluten free shampoos and cosmetics are a good and necessary idea. Unfortunately, even though other grains, such as quinoa (actually more of a starchy seed than a grain), corn, millet and buckwheat or rice do not contain the same gluten as wheat, they are still more a source of starch than of protein and the majority of “gluten-free substitutes” are highly, highly processed foods. Many are soy-based, as well (don’t get me started on THAT!). Just because something is “gluten-free” does not mean it is actually healthy for you, anymore than the word “organic” does. Gluten and carbohydrate intolerance, in general, are far more the rule than the exception in today’s world. It is logical to conclude that grain consumption, especially gluten-containing grains, just isn’t worth the dietary risk, given our culture’s innumerable health challenges and vulnerabilities. Why play Russian roulette? Why add to the unnecessary, glycating, fattening and neurotransmitter and hormonally dysregulating carbohydrate load? In my view it’s better to take processed food off the radar screen entirely and stick to the foods that don’t need a label you have to read every time.

In short, there is no one alive for whom grains are essential for health and gluten, in particular, is a health food for no one.

It stands to further reason that the more symptoms a person has physically, cognitively or psychologically, the more primitive a diet (in other words, pre-agricultural or “Primal”), one ought to consider adopting for reclaiming rightful health. The commonality of degenerative diseases does not make these diseases a normal part of aging, or even remotely inevitable.

The choice is mostly ours.

For more information about gluten sensitivity and celiac disease go to

For the most accurate testing and more information go to: or

Primal Body Primal Mind

Friday, April 26, 2013


The LDN 2013 Conference website goes live

The LDN 2013 AIIC Conference is a charity event organised by the LDN Research Trust, which is being held at Harper College, Palatine Illinois on 5th October 2013.

LDN 2013 AIIC Conference Schedule

Please be aware that this schedule is subject to change. In any event we will update this page accordingly.

08:30 - Registration

09:00 - Linda Elsegood Welcome Address

09:05 - Dr Mark Mandel, Introduction

09:10 - Dr Pradeep Chopra - Pain Specialist

09:40 - Speaker

10:00 - Dr Kent Holtorf - Thyroid Disorders/CFS/ Fibro/Lyme

10:40 - Break

10:45 - Jackie Young-Bihari - LDN Research Trust Patron

10:55 - LDN Expert Panel - Pharmacist Dr Skip Lenz

11:55 - Q&A Panel

12:15 - Lunch

13:15 - Dr Ronald Herberman – Planned LDN Clinical Trials

13:45 - Paul Battle PA-C - Crohn's/MS

14:15 - Dr Burt Berkson - Cancer

14:45 - Dr Deanna Windham – Allergies/Autoimmune diseases in Children/Lupus

15:15 - Break

15:30 - Dr Mark Shukhman - Psychiatrist

16:00 - Dr Mark Mandel and Stephen Dickson – LDN Compounding Pharmacists

16:30 - Q&A Panel

16:50 - Dr Mark Mandel - Summary

The LDN Research Trust would like to thank:

Dr Mark Mandel and Linda Elsegood for all their hard work and dedication in organising the conference and to Lee Reynolds for building the website. They all worked on a volunteer basis.

TNI Biotech,inc for sponsoring and hosting the Networking Party.  More:

Why 3 mg. Low Dose Naltrexone Might Be Best

Why 3 mg. Low Dose Naltrexone Might Be Best

The above title should probably say 3 mg. being the best dose in those with liver disease, cirrhosis or cancer.  More evidence is being produced on why a lower dose of LDN might be best.  Jayne Crocker of LDN NOW has been in touch with Dr. Ian Zagon over the years (he discovered LDN and OGF) and she has shared his thoughts on why 3mg LDN is the optimal dosage and not 4.5. Particularly in those who have problems clearing LDN from their systems or liver.  Dr. Zagon also said that some may benefit from every other night dosing but at the maximum of 3 mg.

Remember, the discovery of LDN came about through research of an opioid system that has remarkable effects on mood an d *cell proliferation*. I highlight *cell proliferation* as I can’t stress enough the understanding of this. When anyone asks how LDN works, we always seem to tell them ‘it modulates the immune system’, which is correct, but let’s break that down a bit and explain what this actually means for cancer.

Once you are diagnosed with cancer, your body lives with cancer cells. These cells have a tendency to grow. The effect you want from taking LDN is to *regulate* cell proliferation, do what you can to stop the cancer cells from spreading. If taken at a low enough dose, LDN can stop the cancerous cells from proliferating by putting a stop to them spreading. In other words, it works by preventing cells from reproducing.

In order to achieve this effect from taking LDN, you need to allow as much time as possible for that endorphin OGF to do its magic (rebound effect). Endorphins are found in most cells of your body and are an important regulator of cell growth. OGF is the one endorphin that has been found to have an influence on cell growth (meaning it can put the brakes on) – which is a good thing!

Now, the duration of the ‘rebound effect’ which happens once LDN clears your system (hopefully in 4-6 hours) is usually around 20 hours, which is why people then take another dose of LDN. It very much is a supply and demand protocol. Once the rebound effect wears off, you take another dose of LDN and 4-6 hours later you allow the endorphins to to go to work for another 20 hours or so.

If for whatever reason you are not clearing LDN out of your system in 4-6 hours, you are diminishing the amount of time you are giving yourself for OGF to do all the good work (it’s not LDN that’s helping you here, but OGF). LDN is just a decoy! There are numerous people with compromised immune systems who cannot metabolize LDN efficiently at a dose of 4.5mg. It is the experience of Dr Zagon, that no more than 3mg will have this positive effect for everyone and I believe he is very adamant about this, especially those using LDN for cancer.

Dr. Zagon email:

The 4.5 mg story.

In 1983 after we published a series of papers in Science announcing our discovery of LDN/HDN - and opioids as growth factors - I received a telephone call from a Dr. Bihari. He was director of medical affairs at Downstate Medical Center in Brookl yn. He thought what we were doing was fabulous and should be used on patients immediately. He asked me what dosage to use. In our patents that were filed, we estimated 1--10 mg/day of LDN - this was based on human pharmacology work with naltrexone that others had done. I said to take a 50 mg tablet and cut it down to around 5 mg. He called me the next day and to my amazement he told me he took it the night before and awoke feeling terrific (remember, you get an endorphin high because LDN raises the endogenous opioids). Apparently, he then went on prescribing close to this dosage - 4.5 mg - to patients as an off-label drug. And, it was working. Now, in fact 4.5 mg probably is not maximizing the window of effect, and is prolonging the naltrexone in the body longer than it should be. That is why 3 mg is best - keeps to a short window of 4-6 hours for NTX, and then 18-20 for the opioids to react with the receptors.

Dr. Zagon

It is my understanding that Dr Smith obtained funding and approval to go ahead with the Crohns trial at a dose of 4.5mg when it was thought that 4.5mg was the best dose to take, but you can see from Dr Zagon’s explanation that in order to get the benefit from the OGF effect, a dose of 3mg is preferable. Dr Smith’s trial also had patients combining LDN with steroids. Now, with all the latest research done and knowledge base we have as of todate, one has to ask if this trial would have produced more favourable results if patients were taking 3mg?

Remember, the minute you take LDN, it is doing everything you do not want it to do (activates cells). In other words as soon as LDN blocks the opioids, it becomes a negative. Increasing the dose means you are increasing the time of the blockade period. You want to control cell activation, not encourage it and this only happens when LDN clears your system and OGF goes to work. The goal from using LDN is to get the maximum effect from the Opioid Growth Factor (OGF), not Naltrexone itself.

Let’s say if you take 3mg you are blocking the opioids for 4 hours, You then have to allow for another 4 hours for OGF to undo all the activity that LD N has done. So 8 hours later you are really benefitting from the OGF for the remainder of the 24 hour cycle. This means 16 hours of great work. Increasing the dose of LDN to 4.5mg means the blockade will last longer, maybe 6 hours. So you then have to allow another 6 hours for OGF to get your body back to what it was prior to taking LDN (12 hours), so you then only have 12 hours of benefitting from taking LDN as opposed to 16 hours with taking a dose of 3mg. And 24 hours later we start again.

And over the last few years it seems that by and far most folks with liver issues and elevated enzymes all do very well with LDN, with great reduction in their lft's.  However, in a few folks, usually in those with cirrhosis, they have reported elevations -  and I believe that all of them were taking 4.5mg.  The couple that did know their ferritin levels also reported high levels (350+).

How do we know if we are clearing the LDN?  Good question - but again, another reason that each person needs to find out what dose works best for them - and not think that one must take 3mg or 4.5mg.  Experiment with dosage if you can.  More later..

Thanks Jayne!

It's Jazz Fest in New Orleans!

Ahh....nothing like Spring in New Orleans!  The calm before the white knuckle days of Hurricane season....but now we party - and party right at the 2013 New Orleans Jazz Fest - go to WWOZ radio here and listen to the Fest live - on the greatest radio station in the world!

Monday, March 4, 2013

A New Year

New Year - New Life

Well, months later, I am celebrating a new life - again!  After a hellish 2-3 years of poverty and becoming used to a day to day existence, things finally took a financial turn for the better in 2013.   Yay - so at the time, I took a pic of the supplements that I had just had shipped in that day - I'd been out of so many supplements for so long -    Note - the black cat is Voodoo - a recent addition to the troops - his story is a strange one - lived in City Park for about a year until he finally let me get him into a carrier.  He turned out to be a tame cat, already fixed and used to being in a home - unfortunately, he tested positive for the FIV virus (cat aids), so I am holding on to him for now - might even try the LDN on him too.  He was rescued a week before the Voodoo Festival last Halloween.

Anyway, also in January,  I turned 60! - yay - I made it.  It was also a celebration of my 10+ years of being HCV+ through the diagnosis in late 2002.  (of course, I've probably been infected since the early 70's)

I also tried a low carb/high fat diet for a time but guess went about it the wrong way - too much too fast.  I'd already been gluten free for several years - mostly dairy/soy free too, however, I was finding that small amounts of dairy was not bothering me as much as it had in the past, which I attributed to the LDN.  However,  I found myself getting those "Laughing Cow" packets and sucking them down.  I shunned the gluten free flours and breads that I had been pretty much living on for the last few gf years - I was shocked to learn about all of the carbs involved in most of these foods - hell, sometimes, I was eating 300-350 carbs daily of "Healthy Food".  Huh.  So anyway, I decided to cut way back on carbs to the tune of 25 or so a day - wrong move - my body rebelled big time - yeast infection, non-stop urination for weeks; getting up 7 times at night to go to the bathroom.   I had first thought that it was some sort of ketosis but when I finally ordered the urine test strips, they read normal.  Once I ditched the dairy, it went away.

Retrospective update to above

I ran across my old Food Sensitivity Panel done by Alletess Medical Laboratory back in January of 2009 (shortly before Dr. Berkson and LDN).  Some of the sensitivities were almond, cashew, peanut, sunflower seed, soybean, lentil, nutmeg, pecan, pumpkin, and quinoa.  The highest were of course for gluten, yeast (bakers and brewers), rye, and sky-high for cow's milk, including yogurt.  And with the exception of gluten/wheat, with the new diet, I had been eating most of the above.  So perhaps that panel is very accurate when it comes to my personal make-up!  For the first year or two after I had it done, I pretty much kept away from those foods but over time, I thought that I was a lot less sensitive to small amounts of them.  Plus, a few folks over on the big LDN forum insisted that their food allergies disappeared after being on LDN for awhile.  At any rate, it makes sense to me as most, if not all of the symptoms I had were do to the foods that I am still sensitive.

Personal make up is so important with diet - and with the dosing of LDN - it just depends on how that person metabolizes it. (See next post "Why 3 mg. LDN Might Be Best" {in folks with bum livers}  George H had mentioned in the comments that perhaps taking the LDN in split doses might be an option - and at one time, I had looked into it.  There are a couple of studies in Europe (and folks on the LDN forum) that are using twice a day dosing - I believe that it is a pain/fibro related study.   However, after learning of the info from Dr. Zagon via Jayne Crocker in the next post, I am back to the "less is more" approach.

Also in the mix is being IgA deficient as well as having MTHFR mutations A1298C and C677T, which according to my doc is causing the elevation in MCV and MCH.  Am taking lots of methyl-folate along with B-12 sublingually (and B-complex 100).

At any rate,  I am working on coming up with my own diet  - again - Gluten-Free worked so well for so long that I lost sight of other things that could also benefit along the way.  George Henderson's blog "The Hep C High Fat Diet" blog is very interesting - he is saying that by using a strict Paleo type diet, his overall health has improved - what I found interesting was that his typical HCV viral load stuck around 450,000 for years - and his last two test had them at the 45,000-65,000 levels (or close to that) -  he is thinking that his diet is the reason - heavy stuff but, as usual with George, backed up by impeccable research.  I found "Wheat Belly" by Dr. William Davis very interesting as was "The Paleo Diet; Loren Cordain".  I also resubscribed to the Well Being Journal - a great bi-monthly magazine that has lots of great stuff.  One included an article, " Carbohydrates, Hormones, and Weight Gain" that spoke a great deal about Gary Taubes research.  I ran across his book at Good Will - "Good Calories, Bad Calories", which is excellent.

Also, in the pic above, shows a loaf of Udi's Gluten Free bread - too me, the most delicious GF bread out there - however, it does have 11g of carbs in each slice, so I now limit my portions to 1 slice instead of two -   Going back to steaming, cooking lots of veggies,  really like Whole Food ground turkey thigh; great for chili, sauces, etc.   I have been eating the WF Applegate organic GF/CF nitrate free bacon with an omega egg or two.   Now, back to pretty much eating what I was but watching the amount of carbs.

So much stuff - I had my 6 month appointment with my Rheumatolgist over at the LSU spot on St Charles.  After having vitals taken (bp: 116/ 54 - or so, can never remember),  I was placed in a room with miserable looking young woman with an active 4 year old.  We got to talking and she said that she had Lupus and had been in and out of ER's and doctors offices.  I asked her if she had ever been tested for Celiac Disease or gluten sensitivity -  no, she had never heard of either.  But I was very surprised when the rheumatology nurse chimed in that yes, she had heard that celiac was very much related to so many conditions, including Lupus. -  The nurse even went so far as to write out some info for the young woman about celiac, and gluten - I was very impressed - you have to remember that it wasn't all that long ago, that no one, including most doctors and medical staff couldn't spell gluten.  Later, when I was being checked out, the nurse thanked me for the info on gluten - she was looking into it - so that was way cool.

The visit was ok - a handsome young new doctor (prob 3 or 4th year), I showed him lab results, he asked if I had been treated for HCV, no, I told him brief LDN story, blah, blah,   - he asked a couple of general questions and then went to get Dr. E - the top dude who I have seen since @2004 or so.  Dr. E swept in, as he does and then asked me how long I'd been on the LDN - which has been almost 4 years exactly (drberkson in 2/09!)

So then Dr. E said that they had heard that LSU was going to start using LDN in the clinic - or "looking into it" -   What?  I pumped my arms - yay, finally some kind of medical institution finally recognizes that LDN might actually benefit all types of disorders, particularly in those with rheumatic type problems - though LDN seems to help darn near everything..  I told them about Dr. Berkson's presentation at the LDN Conference at the NIH a couple of years ago - one being about treating RA (and other disorders) via LDN and ALA -

RA with Lymphoma from Humira - B Cell Lymphoma - Breast Cancer - Rheumatoid Disorders - Dermatomyositis -


RA - SLE (Lupus) -


And all of his videos from that conference are here - (including the HCV, pancreatic cancer, liver cancer, and others, including Q & A sessions:

 I mentioned again that for me, a gluten-free diet combined with 3 mg. LDN seemed to work the best -   the doctor mentioned something about "they told us about that too",  which I took to be celiac  I will say this - for a rheumy, this guy knows more about HCV than my gastros do. And, he is the only doctor besides my integrative doc, Dr. Rai, who wsa impressed by my labs - the rest just tell me that "I'm lucky".

At any rate, that's what's been going on of late.  Hopefully, I will finally update this blog, particularly in the Diet/Supplement and Treating HCV with LDN sections very soon.

I'm still here and back among the living - back to my quest of living to the fullest - back in the light! And back to my quest of clearing this HCV crap - that's what's getting me the most. I am simply thrilled that my viral load has remained basically in the 11,000-35,000 range for 4 years. My question is why it won't go down any lower? Why did it stop at those numbers? - why not 100,000-150,000? Oh well, if all else fails, the non-interferon- non-side-effect- 100% effective antivirals are coming soon - or at least are on the horizon!

Oh, one of the questions that I get the most is this:

If you do ever clear the HCV virus, will you still use LDN?

Yes!  And many people who do not have any disorders take it as a preventative.  Including Dr. Berkson and other doctors who know about it.  For example, in the almost 4 years since I have been on 3  mg. LDN,  I have not had any colds, flu, etc.  It has enhanced my immune system.   On another note, I have not had the flu shot in over 30 years and don't recall having the flu during that time.  That's not to say that there have been times when I have felt "something" come on.  And that's when I go to Elderberry/Zinc - either the liquid elixer or the lozenges.  The  Elderberry Zinc Herbalozenge work great!  It's also sweetened with brown rice syrup so great for diabetics.

Of course, mainstream Docs refuse to understand this - for example, a few years back when I last went through the University Hospital "Medicine" system (and don't get me wrong - that is a great place to go if you don't have any money or insurance for health care!)  I told the Dr - either intern or resident - that I did not want the Flu vaccine.  He seemed to undersand.  However, within 5 minutes, in came the nurse with both the influenza and  pneumococcal vaccines.  She explained that because I had a "compromised immune system due to having HCV,"  I needed both.  I just started laughing and probably ended up with yet another AMA (against medical advice) on my chart for "refusing treatment."

Tuesday, January 22, 2013

Hello Health New HCV Drugs TV Show Rant

The other night, Ochsner Health System presented a show called "New Treatment Options for Hepatitis C."  Dr. Nigel Girgrah (Multi-Organ Transplant Institute) and PA-C Jennifer Barrett spoke about the newer protease inhibitors that have been added to the Interferon/Riba standard treatment as well as the "unique patient centered clinic setting at the Hepatitis C clinic at Ochsner."

I submitted an email that had several questions about these new treatments as well as their opinions on supplements, diet, etc.  I spent some time on it and included several links to NIH abstracts as well as an article about the limits on the newer Direct Acting Antivirals.  At the end of the presentation, many folks called in and a couple of emails were read.  Mine wasn't but it turned out that they had not received it.

At any rate, the show was both sad and comical at times.  Most callers knew nothing about HCV and a couple had just learned that they had the virus after donating blood.  But most wanted to know what they could do to help out their livers via diet or supplements.

Of course, they were told that there was no known diet that could help them and that milk thistle really didn't do anything.  Dr. Girgrah said that there had been some early research done that showed that it helped but overall, nothing could help them except treatment.  He also said that there really wasn't a "Hep C diet".  I did a lot of screaming at the TV. There is so much info out there that there is no excuse for any medical doctor to not be aware of the importance of diet in any disorder.  But this is not uncommon as back when a lot of these docs were in Med School, diet was a non-issue and they were not trained at all when it came to the importance of food.   To be fair, New Orleans is probably the worst place on the planet for expousing "healthy food."  Going gluten-free is extremely difficult and going low carb at the same time is almost next to impossible, particularly if one goes out to eat in restaurants.  Still, when dealing with liver patients, I would hope that over at the unique patient centered clinic, there is at least a nutritionist available for consult - and not just for obese patients.

A worried Mom called in about her 20 something son who had just gotten out of the hospital with complications due to his HCV.  He had no insurance.  She asked the team what she should do.  There was a deer in the headlights moment of absolute silence.  I let out a laugh that I fear woke up my neighbor's 2 year old baby.  The doctor did rally and mentioned getting into University Hospital"s system which offers care to low or no income people.  Then he concluded by telling the woman to get him into "some kind of insurance program".   At this point, I could hear the baby crying through my apartment's wall from my shrieking.   Oh sure, try getting health insurance with Hep C.   I had called Ochsner years ago and was told that they needed a $500.00 deposit just to walk into their clinic - it's probably much more now.

A man called in to report that his viral load had recently skyrocketed.  What could he do?  Of course, nothing but treatment would bring it down. Yes, treatment or using LDN.  Whoever you are, please check out my labs - any of them.  From 1,500,000 to it's current 16,500 by using Low Dose Naltrexone or LDN. It might not quite clear the virus but it will knock the crap out of it!

A 77 year old woman with congestive heart failure also called and asked if the new treatments would benefit her. She was told that with her condition, she wouldn't be a candidate but hopefully, in a few years when the interferon free stuff in the pipeline comes out, that would work for her. She'll be in her 80's then.  The lady also asked if there was something she could buy at the drug store to help her liver and of course was told no.

I guess that it's been too long since my diagnosis of HCV over ten years ago.  I was two months short of my 50th birthday and thought that I was going to die.  I forgot that paralyzing fear that I felt until a couple of callers said that they had found out recently that they had the virus but had done nothing about it.  They were scared to death and didn't know what to do - that was the heartbreaking part. I found out one day that I had it - spent the night reading about it and was at Charity Hospital clinic the next morning at 6:30 to get in line.  But that's me - these poor folks paralyzed with fear.    For their part, the Dr. and PA Jennifer Barrett did tell them to go see their doctors for more testing.  It's very evident that they both care deeply about their patients and only want the best for them.  And what it is best for them is to clear the virus.  I am assuming that they are using the Response Guided Therapy  to monitor the patients progress. 

What has become more evident to me through this show is the desperate need for a Hepatitis C support group in New Orleans.  Prior to Katrina, E. Jefferson Hospital offered one but they never started it up again.  In New Orleans, musician Timothea Beckerman had established "Siren to Wail" and was very active in securing free HCV testing as well as organizing musical events to raise awareness of HCV.  She appeared often on WWL TV.   I spoke with her on the phone a few times after I was first diagnosed but never met her.   Sadly, she passed away soon after Katrina in 2006.  I'll never forget.  I was watching the noon news on WWL and Eric Paulsen reported her death.  I was shocked and numb.

I have been toying with starting such a group but as you all know, my interest is in alternatives - LDN, supplements and diet.  I never wanted to be a cheerleader for those who actualy want to do the current treatment, direct acting antivirals or not.  There is a lot of research out there that could help folks get through treatment with more success - lowering one's serum ferritin before treatment and raising both their Vitamin D3 and B12 levels.  And I suspect that eliminating gluten would go a long way, particularly as both the Incivek and Ribavirin cause horrible rashes.  Vertex just had to put a black box warning on Inivek (telaprevir), due to it killing people due to skin rashes. The FDA has received at least 112 reports of patients developing very serious skin conditions, particularly as a result of using Incivek.  There are hundreds of NIH abstracts linking gluten with all skin conditons, as well as most medical conditions out there.

I guess that I don't know what I was expecting from the show, but it turned out to be the same old, same old.  Medical staff trumpeting the higher SVR rates with the new drugs - up to 90%!  What wasn't mentioned was that in people who had failed treatment before, the percentage was at @ 30-35%.  And also the chance of developing a resistance to the drugs and having to stop - which would probably make future treatments with similar non-interferon therapies even more difficult.

Sigh, all of the above was in my email to the show that supposedly never got to them.  Maybe it would have turned out differently if it had though I doubt it.

Monday, January 14, 2013

BioTech Acquires the Exclusive Rights to Low Dose Naltrexone...

TNI BioTech, Inc. Acquires the Exclusive Rights to Low Dose Naltrexone and Other Opioid Antagonists for the Treatment of Inflammatory and Ulcerative Diseases of the Bowel

 TNI BioTech, Inc. (PINKSHEETS: TNIB) announced that it has signed an agreement for the acquisition of patent rights and orphan drug designation by the FDA to a novel late-stage drug, trademarked "LDN," for the treatment of Pediatric Crohn's Disease.

TNI BioTech has signed a licensing agreement to acquire the exclusive patent rights for the intellectual property of Dr. Jill Smith and LDN Research LLC, whose members are Dr. Ian S. Zagon, Dr. Patricia J. McLaughlin and Moshe Rogosnitzky. The patent covers methods and formulations for treatment of the inflammatory and ulcerative diseases of the bowel, using naltrexone in low dose as an opioid antagonist. Endogenous opioids and opioid antagonists have been shown to play a role in stimulating and rebalancing the immune system and the healing and repair of tissues.

As part of the Agreement, TNI BioTech has the right to apply to the Food and Drug Administration (FDA) for the transfer of the orphan drug status, the investigational new drug applications (INDs), and the right to acquire the relevant clinical data set from Dr. Smith. The FDA has designated orphan drug status for the use of low dose naltrexone in the treatment of pediatric patients with Crohn's disease and ulcerative colitis.

The agreement calls for the formation of a Development Committee to monitor the clinical progress of the Licensed Products and will consist of independent scientific and technical leaders who are highly regarded by the scientific community in the Field of Use of each Licensed Product. The development committee will consist of at least one representative from the Licensor Parties and one representative from the Company in addition to outside experts in the field. The inventors input will be highly valued due to their history and expertise with the therapies.

"TNI BioTech is extremely pleased to acquire the exclusive rights to low dose naltrexone and other opioid antagonists for the treatment of inflammatory and ulcerative diseases of the bowel," stated Noreen Griffin, CEO of TNI BioTech. "We believe that low dose naltrexone has the potential to provide significant relief to those who suffer from Crohn's disease or other auto-immune disorders of the bowel." Low dose naltrexone has already been evaluated in two randomized placebo-controlled phase II trials, one for adult patients with Crohn's disease and the other for children with Crohn's disease by Dr. Jill Smith. Naltrexone in low dose has been well tolerated in almost all patients, and it showed significantly greater treatment efficacy than the control group in both trials. TNI BioTech is now planning to meet soon with the FDA to design and implement pivotal phase III trial(s) for treatment for patients with Crohn's disease using naltrexone in low dose. A platform immunomodulatory technology, naltrexone in low dose also is expected to be clinically tested for treatment of other immune-mediated or immune-deficient diseases, for which the company has previously acquired additional patents.

About TNI BioTech, Inc.

TNI BioTech, Inc. is a biotech company working to combat chronic, life-threatening diseases through the activation and modulation the body's immune system using our patented immunotherapy. Our products and immunotherapy technologies are designed to harness the power of the immune system to improve the treatment of cancer, chronic inflammatory diseases and autoimmune diseases, such as HIV/AIDS.

Our proprietary technology, therapies and patents include the treatment of a wide range of cancers. Our most advanced clinical program involves immunotherapy with Methionine Enkephalin (MENK) also termed Opioid Growth Factor (OGF), which has been shown to stimulate the immune system even in patients with advanced cancer. Management considers any condition that results in altered-immune response as a target for investigation, and the Company will most likely pursue additional investigations for low dose naltrexone and/or MENK as valuable candidates in the treatment of the following:

•Autoimmune disorders such as rheumatoid arthritis and multiple sclerosis

•As an adjunct in cancer patients undergoing chemotherapy, radiation treatments or surgery

•As an adjunct to antibiotics in the treatment of a variety of infectious diseases

•Patients with HIV/AIDS, in combination with retroviral drug therapy

Over on the big Low Dose Naltrexone forum, folks voiced concerns about a price increase because of this news. I was wondering about the cost issue too with this TNI Biotec deal. But according to what is on the Low Dose Naltrexone site, Dr. Gluck posted this:

When our Latest News for October went online, it understandably led to a number of vocal concerns about the possibility that, following any successful Phase III trial and subsequent FDA approval, the price for LDN would skyrocket.

Since then, we were delighted to receive a statement from the CEO of TNI BioTech, Noreen Griffin, that her company is committed to charging no more than $1.00 a day for LDN, because it does not want to undermine LDN’s use as an affordable treatment. Kudos to TNIB!
Fears of a potential increase in LDN’s price are unwarranted. The FDA and any pharmaceutical company making an application for new drug approval are quite limited under the law. A clinical trial, by its very nature, can focus on only one disease. Such trials are very expensive—often at the level of tens of millions of dollars. Therefore, in the event that TNIB does receive FDA approval and patent rights for LDN treatment of Disease XYZ with a brand-named product, the pharmaceutical company is strictly limited to advertising and marketing that new brand as only for patients with Disease XYZ. Doubtless, there will be many people with XYZ who, with good reason, will insist on purchasing that new brand-name drug for their personal care.

However, totally unaffected will be the right of every physician to continue prescribing appropriate off-label uses of the FDA-approved generic medication naltrexone (in the form of LDN) for all of its many medical uses (other than Disease XYZ). Also unaffected will be the right of compounding pharmacies to fill such prescriptions requesting LDN and to do so at the accustomed price.

Most importantly, should the research efforts of TNI BioTech prove successful, FDA-approval of any one of LDN’s special uses could open up a whole world of recognition for LDN and, for the first time, considerable understanding and acceptance by both the media and the medical community. With that, the ability for anyone to receive an Rx of LDN (either as the brand or as a compounded off-label generic) for any of the great numbers of medical problems for which it is beneficial should then become a matter of course.

As a result, I dream of a subsequent decline, in the US alone, in both the annual rates of general morbidity/mortality and of health care costs of a whopping 15% to 20%. And beyond that, perhaps we will eventually live to see LDN sold over-the-counter at pharmacies around the world.