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Dr. Berkson & Alpha Lipoic Acid

Hi everyone:

Sorry for the delay in my updating you all on my visit with Dr. Berkson. This will likely be a long post--out of necessity. There is alot of information that I want to share. I will be pasting some of the emails that I sent to my friends while I was in New Mexico and adding some additional information. So here goes...

I arrived in NM on Sunday, May 9 and had my first appt with Dr. Berkson on Monday. It was basically a meeting to go over my health records, diet and exercise (I had to keep a journal of my food intake and exercise regimine for 2 weeks) and other important things like family, emotional well-being, etc. He ordered several blood tests including:

Comrehensive Metabolic Panel
Lipid Panel
CBC
Urinanalysis with Reflex Micro
Hemoglobin A1C
Rheumatoid Factor
CRP
ANA Anti-Nuclear Antibodies
ASO Titer
Homocysteine
Epstein Barr Panel
Vitamin D
IgE food sensitivity panel

Regarding my diet, he gave me a diet that he wanted me to follow. Here it is:

You diet should consist of first, fresh green veggies every day and have one of these 6 every day: cabbage, broccoli, spinach, cauliflower, cilantro and greens

Second, fresh whole grains including cooked oatmeal, rice, barley, corn, buckwheat groats

Third, proteins including whole eggs, roast chicken, fresh fish, beans, block cheeses and occasional red meat

Fourth, fats including real butter and olive oil

Fifth, fluids including water, tea, non-decaf coffee and fresh veggie juices

Avoid: Milk by the glass, while flour and white sugar, diet foods, restaurant deep fried foods and margarine, tobacco, salty food and alcohol

Things he considers a must: high fiber foods, exercise daily and have fun and reduce stress.

Now keep in mind that the doctor sees many patients with many different problems. Being that we have stomach problems, and the expression of our diseases are unique, you have to modify the above diet to suit you. If you have issues with corn, then avoid it. You get the drift.

Prior to becoming an MD, Dr. Berkson was microbiologist specializing in the study of fungi. So some of the pearls of wisdom that he shared (see the next paragraph) will make more sense in that context.

1. Do not use agave nectar--it is pure fructose and the process of making it requires some sort of fungi which remains in the nectar post processing. Meaning you ingest it as well. So it is not a natural substance like honey. Better to use raw sugar--in small amounts.

3. Do not use stevia--it is a false sugar. It ruins DNA and causes free-radical damage. Better to use raw sugar.

2. Do not drink decaf coffee as the process to decaffeinate it requires hydrocarbons (or some such thing) that you ingest (in small quantities) every time you drink a cup. Better to drink regular coffee.

He also shared a sobering story about his tenure as lead investigator for IV ALA and his experience with pharmaceutical companies. I don't want to share it in a public forum, as I am sure that he is ostracized enough by the mainsteam medical community. I don't want to add to it. But I will say that the pharmas are NOT working to heal or cure us. Their first priority is to make a profit. We MUST take our health into our own hands.

After that, I had my first ALA infusion. There are about 14 infusion chairs in the infusion room and 3 full time nurses, who are the nicest women on the planet. People stream in throughout the day for infusions and have various diseases from cancer to hepatitis to muscular distrophy. Everyone I met during my 2 weeks at the clinic has expressed how much the ALA infusions has helped them or has literally changed their lives. I felt a mild "high" during and after the infusions. But other than that, I did not experience much else.

I received 2 infusions per day for two weeks and 1 B-12 shot daily as well, as ALA depletes B-12. After the first few days, my crohn's started flaring up again--and I experienced a different feeling of pain that I have not experienced before. Not that it was a greater pain, just that the nature of it was different.

At my next meeting with the doctor, we discussed my test results. Everything was good except that my Epstein Barr Virus (EBV VCA IgG level) was very high--136. Also, my ANA (anti-nuclear antibodies) was high. Normal is <1:40, mine was 1:320 - this, I am told is basically an autoimmune disease test, so it was no surprise to me that it was high.

Curiously, my CRP level was normal. Several months ago it was 12.5. Curiously, I was still symptomatic at the time of this test, so it makes me wonder if the result was incorrect...

As far as my food allergy panel, peanut and pork came up as mildly allergenic for me, so I am avoiding those.

Basically, the doctor believes that the Epstein Barr Virus coupled with stress is the main cause of my problems--ie crohns. He suggested that I follow the diet he recommended, do hypnotherapy and biofeedback. The doc only recommends brands from manufacturers that have allowed him to inspect their manufacturing facilities, so that he can ensure they are properly manufacturing the supplements. Otherwise, he will not recommend their products to his patients. For example, some manufacturers of alpha lipoic acid (ALA) tablets source their ALA from China and up to 60% of it can be unknown substances. Remember, this is based on my blood tests, so it does not mean everyone should take all the supplements that I am taking. But standard vitamins anyone can take so use your own discretion. One thing I will say (based on my opinion, research and hearing the stories of the other patients who have been on ALA for years and have had their
lives change for the better because of it) every adult should take ALA daily. It is THE most potent antioxidant out there. So here it is:

ALA (300 mg) by Metabolic Maintenance - 2 per day
Multivitamin with minerals (called The Big One) by Metabolic Maintenance - 1 per day
B complex by Metabolic Maintenance - 3 per day
Selenium by Metabolic Maintenance or Carlson - 2 per day
Pancreatin (digestive enzymes) by NOW - 2 with each meal
Pantothenic Acid by Metabolic Maintenance - 1-8 tabs daily depending on my level of fatigue
Omega Fish oil by Nordic Naturals - 3 per day
Probiotics by Metabolic Maintenance extra strength - 2 per day
Vitamin D (2,000 iu) by Carlson - 2 per day
Zyflamed by New Chapter - 3 per day

I asked the doctor about other supplements that I was interested in. Here are the brands and dosing he recommended for me:

CoQ10 200mg by Metabolic Maintenance - 2 per day
Curcumin by Biotech (not sure what this brand is but I will call his office to find out) - 4 per day
L-Glutamine by Metabolic Maintenance - 3 per day

All supplements should be taken with food.

I am about 3 weeks post treatment and it has been a rough road. I experienced some depression because I did not see immediate results (even slight) that I thought that maybe the treatment was not working. Now, slowly but surely, I am feeling better everyday. I am a little hesitant to even say that, as I don't want to jinx myself. But something is working. Whether it is the ALA or the naltrexone (I got the LDN compounded at a pharmacy in New Mexico with acidophilus as a filler) to see if it worked better than the one I was originally taking from Skips Pharmacy, which has an avecil filler. The doctor said that sometimes, people take LDN from one pharmacy and they see little results, but then they get it from another and they respond. It could be anything from where they source their naltrexone to the filler.

So, I continue to get better and better everyday. I hope it continues. Both the doctor and the nurses have told me that it takes people a while to respond, but they do. Everyone's healing process is different.

Would I go out there for treatment again? Yes. Do I think it was worth it? Yes. Dr. Berkson is a good man who really cares about healing his patients, and I really felt that when I met with him 3 times. The other patients all rave about how much he has helped them--many have been receiving treatment from him for years. For me, that is the best recommendation that I could get.

I am happy to answer any questions and I hope this info helps.

Chris
 
god bless you for putting up your experience and manufacturers of the products he recommends. i am excited for you and hopeful for the rest of us too! i want to add something too. my profile in terms of labs was very similar to yours, and i am hla-b27 positive... i only get gut problems with regular milk, not raw milk. i had many problems though and lots of auto-immune conditions including ebv, allergies, iritis, thyroiditis, reactive arthritis, chronic fatigue, and mixed connective tissue disorder. on top of all that i had anemia and osteoporosis. i was on antibiotic therapy for a long time which helps some auto-immune patients. did not help me or my ebv. when i went to see doctor in texas...dr. roby for bio-identical hormones and homeopathy. the following month all my blood work came back normal. all autoimmunes were gone. three months later with the start of pollen season my iritis came back...triggered by allergies. i am hoping that ldn, alpha lipoic acid and acupunture will address the iritis, and then i will be free. if you are hla-b27 positive and your autoimmune started after age 35, you owe it to yourself to find a good dr. like dr. roby in austin texas... to get your hormones balanced. he saved my life. thank you again for your post. i was checking back frequently to learn how it went for you and the brand recommendation.
 
Chris, thanks for the very informative update! And I'm especially glad you're getting some results cause it sounds like you made a big sacrifice of your time and expense to finally met with Dr. Berkson.

Is there a website you can recommend which carries the supplements you have listed?

RobK
 
Hi Rob and Loveag--

I am glad that you both feel this information is useful. I hope it helps. Dr. B is a great guy who really cares about his patients. There was not a single patient at the clinic who had a bad thing to say about him.

Rob--I purchased these supplements on Needs.com. At the time, they had the best prices for Metabolic Maintenance products. What I usually do is type Metabolic Maintenance Lipoic Acid 300mg in Google and when the search results come back, I click on the shopping tab at the top and then sort by price. This will give you the vendors that sell the ALA and you will be able to i.d. the vendor that sells is most cheaply.

Thanks for the tip, Loveag. Not sure what hla-b27 is, but I will research it. Your story is fascinating, thank you for sharing it with me. My disease started in my late teens. But maybe my issues are hormone related too. And maybe that is why LDN was not working so well for me. Thanks for the tip. I will research it and talk to my new doc about it, when I find one! Would you mind sending me your doctor's contact information?

Unfortunately, I am still slightly symptomatic, though not badly. And I had an awesome week last week. But even a little is too much for me. But I am hoping that my improvement continues, slower than I would like, but better than nothing. So perhaps your hormones information is the key to unlocking the mystery of my disease mechanism. THanks again!

Take care,
Chris
 
Thank you for the updates on your progress, I hope it continues to get better for you.

I really wanted to know more about Dr. Berkson as I like a doctor that digs for the best treatment for his patients. I will likely never see him personally, as I am pretty much a self treatment person, and he is no where near me. Your posts have given me some potentially important information regarding the pathogen he feels may be involved with your Crohn's.

Does Dr. Berkson think the Epstein Barr virus is generally involved with Crohn's, or just some cases? I happen to have a pretty effective method for disabling viruses, at least the ones I have dealt with so far. I may look into this one a little closer.

I would like to know if he has considered the XMRV virus as possibly being involved with Crohn's.

Dan
 
Hi Chris, I'm new to this forum and very interested in your experience in NM. Is there another thread that you posted with more information about Dr. Berksen (how you found him and why you decided to take the trip to see him?). I am currently looking for any doctor in the US that is willing to take the time to truly help me. Mine has been a difficult case and I've seen many university doctor in Philadelphia with less than stellar results. Feel free to PM me if you want. Any more information you would be willing to give me would be greatly appreciated.
Thank you for you post - Amy
 
Here is Dr. Berkson's Bio and some other items of interest.

http://www.cancercontrolsociety.com/bios-old/Berkson.htm

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

http://www.drpasswater.com/nutrition_library/Nov_05/Berkson_Lipoic_final.html

I know I have mentioned him in this forum before. I have never met the man, but agree with many of his thoughts on treatment, and he has had better than average results with Cancer patients, although he is not an oncologist.

I think I said something to this effect: If I had my choice of doctors to treat my disease, he would be the one I would go see.

I will do a search and see if i can dig up some of the old posts.

Dan
 
HI Guys:

First, let me add another piece of information about Alpha Lipoic Acid. If anyone decides to take it, you must take a good b-complex with it. Note that I am taking 3 b-complexes per day. The reason being that the ALA depletes b-vitamins. Also, you MUST eat when taking the ALA and be aware of your blood sugar levels. ALA also lowers your blood sugar, which is why the nurses always stressed that patients must eat before and after infusions.

Dan: the Dr. did not mention the pathogen that he thinks is involved in all crohn's cases, he just focused on mine. And I did not think to ask him about XMRV--I read your previous post on it and found it very interesting. I wish I did think to ask him about it. Based on my meetings with him, and this is just my opinion, I think he believes that everyones cases are different and each case has its own unique pathogens and triggers that cause their disease. Again, this is my opinion and not based on what he said. Sorry I can't be more specific or give you a better answer. But what I can say is that by ordering specific blood tests, he at least is trying to figure out what that person unique triggers are. Looking back on my old blood tests, I actual had a test for Epstein Barr in that past and it came up positive. But I don't recall ANY of my doctors addressing it all! So I didn't think to connect it to my Crohn's. Dr. B did and that is so helpful to me because now I feel like I know what pathogen I am fighting.

Speaking of fighting, Dan, I am very interesting in energy medicine treatments that you have been using--is that the right term? Anyhow, I asked Dr. B about that--I told him I would like to try it to disable my Epstein Barr and he gave me the go ahead, but said be careful because some of the machines being made for this type of treatment today are not as reliable the original Rife machines (I think that is the name of the originals). SO I wanted to get some info from you about where you obtained your machine, as I would like to purchase one and try it. Any other info you can provide about this treatment, suggestions, etc. would be greatly appreciated.

As far as Dr. B as a person, I think you probably go the drift in my previous posts. I did not exaggerate when I said that EVERYONE who was their getting their infusions RAVES about him and the staff. He has literally changed peoples lives. I hope his treatment changes mine, that still remains to be seen as I am still roller-coastering from great to bleeding. But I don't regret going.

Amy--Hello! I lived in PHilly for 10 years until I moved to NYC a month ago. There are some good docs in Philly--but when I say good, I mean good compared to other mainstream docs. But they still are not healers. So I understand your frustrations, which is why I decided to find a healer to help me, and I also try to help myself by trying alternative treatments. Anyhow, I learned about Dr. B on the lowdosenaltrexone.org website. I noticed that he speaks at the LDN conference every year and uses ALA in conjunction with LDN to treat liver, cancer and autoimmune patients. So I did more research, listened to some of his speeches on You Tube (just type in Burton Berkson or Burt Berkson in You Tube) and thought this is a doctor I want to see. So I saved up some money and made it happen.

Unfortunately, most of his published studies are on liver and pancreatic cancer patients. But you can find them on the PubMed website (just type in PubMed in Google and it will take you to the NLM website). When you get to there type in Berkson, BM or Lipoic Acid. Also, go to Google and type in Berkson, BM and Lipoic, Burt Berkson and you will get some info on his studies. Good luck Amy and is it nice to meet you!

Dan, you are a trailblazer and I think you should become a doctor--well, and integrative health practitioner. I think you would be great. I admire you tenacity when it comes to finding a way to defeat this disease, and I share it. I refuse to let it get the best of me and will keep searching until I find the key to reversing this dreadful illness. I look forward to talking with you more about the energy med stuff.

Take care all,
Christine
 
He is correct about the Rife type frequency treatments. Most all of the devices made now, operate differently, and not as effectively as the original.

There is a new one that I have that works nearly the same, but due to FCC bandwidth interference problems, it is not exactly the same. I have used it enough to determine that it is far more effective than my previous devices.

I can tell you what device will work, and since this is a virus, it should be pretty easy to disable it. I have never had much trouble with viruses. They are very vulnerable to a destructive frequency. Much more so thatn most bacterium.

The best way to learn about how this works, and when it does not work, is to join the Rife Forum at http://www.rifeforum.com/

There is an interesting thread going now on a person with Ramsey Hunt Syndrome & Shingles which is a viral condition. He has had this for over twenty years, and one treatment brought it from active to fading away in a weeks time. It is the only treatment that has done this. I used the same treatment one my wife for her Shingles, with the same result.

There are doctors, physicists, engineers and people from all walks of life that are using and helping to improve this method of treatment. People far smarter than myself.

Thank you for the compliment, but I am too old to actually get a career now, and I imagine I would be stripped of my license to practice in short order, if I used some of these methods that are not approved on patients. that is why Dr. Berkson does not use frequency treatments. But you notice he did not say they do not work.

Dan
 
I know what you mean. Our healthcare systems is controlled by the pharmas and insurance companies. Alternative treatments don't fit with their business models, so to be a "doctor" you have to conform, or get crushed. Just wanted you to know that I appreciate all of the help and widsom you provide on this forum.

THanks for the info on the rife forum. I just joined and will do some research. If you could let me know your thoughts on which machines are best and where to get them, I would greatly appreciate it. Being that you have the same disease and I do, and have used the machines extensively with success, I would feel more comfortable using what you use.

I appreciate it, Dan!

Chris
 
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