Sunday, June 28, 2009

Dr. Burt Berkson and Low Dose Naltrexone

   2013 UPDATE

This post was written almost 4 years ago in 2009 after I had gotten back my first labs since seeing Dr. Berkson.   Hard to believe that it's been 4 years -  but 4 years of normal liver enzymes and very low viral load (11,500-36,500)   Latest labs:

2013 Labs


And some of the below has probably changed over the years.  I have received so many messages from folks who went to see Dr. Berkson - one couple met in his office and ended up getting married.  I would love to see him again and might some day.  Meanwhile, if I ever want to do it, my own integrative doctor offers IV ALA treatments.

Dr. Burt Berkson and Low Dose Naltrexone


When I first started this blog, it was to detail my life in New Orleans with Hepatitis C and my daily struggles in post-Katrina New Orleans. However, after having such wonderful results with Low Dose Naltrexone after visiting Dr. Berkson in his clinic in New Mexico, it has become more about promoting LDN than anything else.

My own integrative doctor told me about Dr. Berkson and his work with Hepatitis C and Alpha-Lipoic-Acid in 2007 but I had heard of him before.  A few of of the online health groups had posts about him.  He was the United States FDA principal Investigator intravenous Alpha Lipoic Acid for 23 years and also (and still is!)  a CDC expert, intravenous Alpha Lipoic Acid and hepatotoxic poisoning, Centers for Disease Control and Prevention, 1990-present.


I began taking his regimen of ALA, milk thistle and selenium in his recommended dosage - my liver function tests did improve overall but the inflammation and fatty liver continued.  Dr. Berkson prefers the use of European sourced Lipoic acid, where it is available by prescription - Metabolic Maintainence - and Bio-Tech.
I was taking 300mg 2x daily along WITH a B complex 100 with every dose.  Sometimes I would take 3 a day.  You can probably shop around and find them less expensive - sometimes amazon.com is a good place to go.

However, my own integrative doc recently insisted that I switch over to the Jarrow Sustain brand of ALA - I fought her tooth and nail over this! How could I argue with Dr. B? But I had very good lab results, including my AFP, which was the lowest it had been in years!

A couple of people that I knew through various Hepatitis C forums went to see Dr. Berkson and both had good experiences with him, so I decided to go. I still had a little money left from the settlement that I had gotten after losing my house and possessions due to the flooding after Katrina. Not much, but enough to cover the air fare, rental car, IV ALA treatments and misc.costs.

I called his clinic and was told to fax them a few medical test results - a PT (Prothrombin time - which tells how long it takes your blood to clot), platelet count, LFT'S (liver function tests) and I believe, HCV viral load test - I can't really remember exactly. I ended up sending a lot of stuff - to the point that it cost me 27.00 at Office Max to do so - I don't have a fax machine.. The woman on the phone was very nice, though a bit rushed, and she took down other information.

They called me back the next day and set up an appointment several months away, but later in the day, they called me back and said that Dr. Berkson had reviewed my lab work. Could I come in two weeks? Well, this unnerved me because I thought that he had seen something really horrible in my labs. But, it turned out that they had a cancellation and were just trying to fill it. I couldn't make it on such short notice, so they made another appointment for six weeks later - which was fine for me and months earlier than what they had originally told me. I've since heard that this is common with Dr. Berkson's office so don't get discouraged it they tell you that it will be six months before you can get in - if they have a cancellation, they will try and get you in earlier.

I flew into El Paso, Tx. on a Saturday in mid-February, 2009 as my appointment with the doctor was on a Monday and the place that I was staying at's office was closed on Sunday - I didn't want to rush it by flying in Monday morning. From there, I drove the 40 miles to Las Cruces, New Mexico. I had booked a room at Value Place as they offered kitchenettes. - plus it was fairly cheap compared to staying at a regular hotel - about $225.00 for the week. With my gluten/dairy free diet, I needed a place where I could prepare my own meals and save money. The motel offered for sale a cooking set, but I bought what I needed from a nearby Big Lots.

Dr. Berkson's office was two exits from my motel and easy to find. I was surprised that it was a "regular" doctor's office and not an enormous clinic - actually kind of on the small side. After about 45 minutes wait time (I chatted with Dr. Berkson's lovely wife, who worked in the office) ,I met with Dr. Berkson. I told him that it was an honor to meet him. He reviewed my labs which my own doctor had recently ordered and seemed satisfied with what I had with me, otherwise, he would have ordered others. After taking my history and examining me, he told me what he wanted me to do while I was there as well as follow-up instructions, which mostly centered around diet. He went over which foods to eat and which to avoid and stressed too, the importance of exercise every day.

for more on supplements and nutrition

He wrote me a prescription for 3.0 mg. of Low Dose Naltrexone, as well as a prescription for valium as he said that the LDN usually caused initial sleep disturbances. Our time seemed very short, although it was close to an hour appointment, but I wanted to ask more questions - he told me that we would meet again later on in the week. I might add that I had originally planned on a two week visit instead of the one week that I ended up staying due to one of my beloved cats going into renal failure right before I left town.

I was whisked immediately into the "treatment room" - a small comfortable room that probably had about 8 chairs with IV poles next to them. They asked me if I had eaten something as they insist that you do so prior to getting any ALA treatments. The nurse was very nice and matter of fact - she was great with her IV (btw - they use the "butterfly" set up's that was placed into my hand) - it took about 30 minutes and near the end, I was given a B-12 injection in my upper arm. I've since heard that they might have changed this over to a B Complex injection but I am not sure. At any rate, I felt fine and had no ill effects. Afterwards, I went to the front desk and checked out and was told the office schedule - they wanted me to come two times a day for IV's. I was also given directions to the Rexall drugs that provided the LDN and sleep aid prescription - I think that it was about $63.00 for a 90 day supply.




In the next week, I received 4 IV Alpha-Lipoic-Acid treatments and Vitamin B injections while I was receiving the IV treatment. The ALA uses up the B vitamins and it is important to take a good B complex while taking any ALA. The clinic also stressed that one must eat prior to getting the IV treatment, as the ALA can also lower blood sugar.

The treatment room was always full, with a variety of people getting treated for various disorders. Everyone was very nice and pretty cheerful for a medical clinic! I thought back to my years of being treated at a teaching hospital and the hours of waiting miserably in the waiting rooms. This was more like it!


They were disappointed that I could only stay for the week, but I told them that one of my beloved cats, Brooks, had just been diagnosed with end stage renal failure and that I had to get back to care for him. I had my last treatment on Friday morning and flew back to New Orleans the next day.
During the months that passed, I really didn't feel much better and thought that the LDN wasn't working. However, this was a period when I was so stressed out over my cat, Brooks, and his renal failure disease, that all I could concentrate on was his care, as well as caring for the other cats - taking Brooks to the vet every 2 days for sub-q fluids and almost losing him a couple of awful times. Fortuntately, Brooks finally allowed me to do the fluids on him myself and he stabilized after awhile. But the stress of his illness was having a toll on my well being.

Until..... I had my 4 month blood work results and doctor's appointment in early June and was floored by the results. My liver function tests were completely normal! My ALT/AST fell from 174/90 to 23/30 in 4 months - normal levels for the first time ever! And my viral load test went from over a million to 49,400! Amazing!

On a side note, check this out - back in 1986, a friend and I went to a road side garage sale and we bought a strange wall hanging for $1.00 - it "spoke to us":




It's still hanging on my wall - so when I got out to New Mexico, I saw nothing but red fire hydrants and took this picture:



Far out - maybe that poster wall hanging in 1986 was an omen of things to come - I just found it weird...  ok, back to LDN and Dr. Berkson.......



I began to read more about LDN and joined several online LDN support groups, including "Hepatitis Children and Cam Alternatives", where several members were also using naltrexone to treat their various liver disorders. One member had treated her adopted daughter for Hepatitis B and eventually achieved sero-conversion - her liver enzymes also returned to normal and her viral level was undetectable.
Here is her story:

Treating Hepatitis B With Low Dose Naltrexone


Updated LDN May 2010 Labs


Updated Lab Results September 2010



More info about Low Dose Naltrexone:

LDN info

LDN Database

LDN SCIENCE

The Promise of Low Dose Naltrexone

From the recent 2009 Low Dose Naltrexone Conference where Dr. Berkson was the keynote speaker - he talks about ALA with LDN for treating Hepatitis C, Liver Cancer, Pancreatic Cancer, Lymphoma and many other disorders:

Introductory remarks - ALA - Hepatitis C

1) http://www.youtube.com/watch?v=WHyUfHqR4PA

2)Pet Scans - Treatment Protocol - ALA Explanation - Pancreatic Cancer with Mets to Liver (case to be published in December)

2) http://www.youtube.com/watch?v=xy65UGsVMac

Pancreatic Cancer with Mets to Liver - Hepatitis C with Liver Cancer -

3) http://www.youtube.com/watch?v=dRf8Xuqhb5Q

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

ALA and purity; Asian products vs European - ALA discussion - Epstein-Barr Virus -

6) Dr Berkson Q & A Part One

http://www.youtube.com/watch?v=RsBN78Cl1s4

Lab Tests - Dosing of LDN and ALA - R Form Lipoic Acid - B Complex -

7) Dr Berkson Q & A Part Two:

http://www.youtube.com/watch?v=c29DAE4MGmo

Pancreatic Cancer & Thoughts on Treatment - ALA Gene Expression - Misc.

8) Dr. Berkson Q & A Part Three:

http://www.youtube.com/watch?v=nYxzDuKAdfI


Dr. Berkson interviews - must listen to or read!

Honest Medicine


23 comments:

John said...

Hi,
I read your wonderful story. I am glad you got relief. Do you know how to get a hold of Dr Berkson? His phone that I had says it has been disconnected.
Thanks,
Bonnie

John said...

I found my answer, they changed the area code. So it is now
575-524-3720
Thanks anyway,
Bonnie

Julia Schopick said...

Thanks so much for recommending that your blog visitors listen to and/or read my Honest Medicine interview with Dr. Berkson. In addition, you might be interested in reading my 116-page ebook -- titled "The Faces of Low Dose Naltrexone" -- also on my website, which was posted for International LDN Awareness Week, in October. The ebook may be downloaded at:

http://www.honestmedicine.com/2009/09/free-ebook-now-available-for-international-ldn-awareness-week-the-faces-of-low-dose-naltrexone.html

Thanks again.
Julia Schopick
www.HonestMedicine.com

chriscat said...

And a big thank you to you Julia! Your site is wonderful and your interview with Dr. Berkson was outstanding! Thank you!!!!!!

Nola Chris

celia said...

Nola, what a wonderful experience you had with Dr Berkson, it was heart warming to read. Keep on keeping on, you are a star!!
Celia
Scotland

angelinyourarms said...

I am going in May 2010. Are you still doing good? I am so hopeful.

Blessings

chriscat said...

Hi,

Yes, I'm doing great! Check out my January update:

http://nolahepper.blogspot.com/2010/01/ldn-january-2010-lab-results-for.html

Good luck!

Nola Chris

WestNileGuy said...

Its always interesting to find stories of other Dr. Berkson patients! I'll actually be going down there in two and half weeks for my IVs. I hope you're doing well!

angelinyourarms said...

I have been to see Dr. Berkson twice and now my Doctor here will be doing treatments on me.

Dr . Berkson was very rude not only to me but a few other that were there. His nurses are the only thing that made it worth staying for.

I thank God for hos treatments but he needs to learn how to respect people!!!!\\

Susan Jimenez

29 Palms Ca

Nola Chris said...

Dr. B can be a bit brusque - but really, who cares? He has helped so many people around the world get their lives back - and that's what counts, isn't it?

I have found that most of the mainstream doctors that I have been to prior to finding my own, integrative doctor, are rude, insensitive, condescending, "DR. GODS" who immediately dismiss anything alternative. If it wasn't taught to them in medical school, then it can't be any good - and I refuse to ever give them my business again.

God bless Dr. Berkson for his ability to look outside of the box - which is what led him to help so many people in the first place.

Nola Chris

angelinyourarms said...

I agree with you Nola on that part...but what he said to me and how he talked to me was very uncalled for....I am in no way wanting to get people to stop going to him....please go.....but when we are already down and fell lost it tough when we are spoken to in such a manner.....thank God for my dR. HERE IN Cali TAKING OVER...HE IS VERY CARE AND NEVER RUDE OR JUDGING. i AM GLAD YOU ARE DOING GOOD Nola....lol...sorry for all the caps....I didnt mean that.

Unknown said...

I have visited Dr. Berkson twice and found him very concerned and caring. I went first in March 2011 and stayed for four weeks for ALA treatments, again last July for two weeks, and I am returning the end of this April for another two weeks. In the interim I have been getting two ALA treatments every two weeks from a local integrative doctor. And I've been on 3.0, then 4.5 LDN since I started at the clinic. I went for cancer, not Hep C, but the treatment room, which holds 14 people, was usually full of many Hep C patients, all of whom reported wonderful results from their treatments there. Most of them return periodically in order to keep up the improvement. Some were near death and are now healthy. I think of all the illnesses he treats, he has the most success with liver problems. I would recommend him highly.

Anonymous said...

How i wish I could visit Dr Berkson! But I live in the UK.
I have autoimmune hepatitis and would love to take LDN if it would help.
Does anyone know if LDN is suitable for AIH?
Or any experiences or stories or contacts?
Thanks
Julia

Memphis said...

Dr.Berkson is a wonderful person and a very caring physician. I am forever grateful to him for his publications about pancreatic cancer. Dr.Berkson was able to help us and consult our oncologist, even though my husband was never his patient. Dr.Berkson did it out of the goodness of his heart!!!
My husband was diagnosed with stage 4 pancreatic cancer in September 2011. We started ALA/LDN treatment in November. Today he shows no evidence of the disease (NED)!!!!

Nola Chris said...

This is fantastic - thank you so much for posting!

Nola Chris said...

To the person with autoimmune hepatitis - YES, LDN works very well for that and most other autoimmune disorders. Also, avoiding gluten can be a big help!

Check out the LDN database - there are several folks reporting great results for AIH using LDN:

http://www.ldndatabase.com/hepatitis.html

Deb E said...

I'd just like to tell you how very moving your blog was to me! I founded the Facbook group Beating Thyroid Disease with LDN We have members with every disease form Hshi's/Graves, RA, Lupus, Celiac, Pernicious Anemia, Addisons/Cushings, to the Scourge of Humankind Lyme Disease. With your permission I would be honored to put this in our Files Section. Your blog brought tears to my eyes, but happy ones. Thank you So Much!
Sincerely.
Deb Anderson Eastman

Nola Chris said...

Thank you so much! Sure, you can put the blog in your files section.
And good for you for starting the Thyroid group - sounds like you are helping a lot of people! Keep up the great work!

Anonymous said...

I am taking my son to see Dr. Berkson on July 2, 2012. I have been waiting for this appointment for over 3 months! He has a rare liver disease (PSC), and I am hoping that Dr. Berkson can help him. As of now there are no medical treatments for this disease. I have been very encouraged by all of the information that I have read on Dr. Berkson. This blog really helped firm up my decision to go see him. Thank you for posting!

Nola Chris said...

Hi - that's just great that you all are going to see Dr. Berkson! Meanwhile, you might explore a gluten-free diet as there are links between PSC and celiac disease. Dr, B has his own diet plan that is pretty low in gluten as it is - I have found that with me, gluten/dairy free combined with ldn works the best!

The high prevalence of CD (3.5%) in autoimmune cholestasis suggests that serological screening for CD should be routinely performed in such patients by immunoglobulin A endomysial or human tissue transglutaminase antibodies

http://www.ncbi.nlm.nih.gov/pubmed/12385447


Good luck and tell Dr. B that Nola Chris from New Orleans says hello - he's the best!

Anonymous said...

Nola,
Thank you so much for...just posting all this. i am 25, inherited hep c from blood transfusion at 2 month old. My liver is very bad at this time, right before cirrosis. i have been searching so much on diets and vitamins....i am taking so much stuff right now and so many vitamins, none of which you seem to be taking...im going by the cancer free book, barley powder, etc. Is there anyway you can tell me how you are doing now? what vitamins you are taking, what i should start taking and increase dosage, etc....i am on a glutten free diet, dairy free (altho, should i drink goat milk? i have been reading so many reviews on that)...please tell me your diet...i am going crazy with this raw, not raw, too little nuts too many nuts, too many veggies, no grain, yes grain confusion! please provide a way for me, i am soooo lost at this point. I am also breastfeeding my 9 month old, which one's of these can I start taking and which onse i need to wait on? I wanna do something right now because I am watching my kids grow up and feel like my time is running out ): there is what i am doing now:
gluten free, dairy free, grain free, little nuts, once a week meat or fish, no butter exept for coconut butter, coconut, flax, olive oil, a lot of raw stuff probably 50 -50 veggies and fruits per day.
Vitamins:
Barley powder 15 pills per day
D3 - 10000 iu
milk thistle - 2 per day
daily vitamin - 1 per day
artichoke - 3 per day
mashroom liver support - 2 per day
green tea extract - 2 per day
I really hope you can help...i know i am asking alot, so i jusst hope you can tell me anything...i have been told so many things and just so happy to find you, someone who actually went through it all. Please let me know what works and doesnt, how your health is now, if you are hep c free etc. Thank you so much.
Julia

Anonymous said...

Recently there has been new evidence that the R form of ALA is better than the S or a combo. Do you know where Berkson stands on this issue or various forms. I know he prefers certain brands that he knows are not using ala from China but there have been new updates in the ALA available since his original articles on this subject.
All the various forms of ALA confuse me

Tashamboots said...

Hi I read your story and I am very interested in hearing how you are doing now. I was diagnosed with AIH 4 years ago and at end stage fibrosis before cirrhosis. I would like to know what everyone is using to heal their fibrosis. Vitamins, etc. How have your liver biopsies been after the treatments or vitamin supplements? I really hope people are still following this board.