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 -


4) http://www.youtube.com/watch?v=RXz3VIuyHHk

RA - SLE (Lupus) -

5) http://www.youtube.com/watch?v=nttilGKpJvU


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

http://nolahepper.blogspot.com/2009/11/dr-berksons-2009-videos-pancreatic.html


 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 ZAND.com  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."

1 comment:

George Henderson said...

If you have issues cutting carbs, Paul Jaminet and the Perfect Health Diet is the go-to book. He'd totally understand the issues you had.
I've just blogged about naltrexone twice and it's great to read this.
New evidence that supports the old claims, except, it's not really about the endorphins so much.
A higher (or lower dose) or taking LDN 2 or more times daily might be even more effective for HCV than the standard LDN schedule. Or not, but it's worth considering if anyone doesn't get the results they want.