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Hi:
You can find an abundance of info on the following sites. I would suggest you read them all.
If you have questions you can email me.
LDN.com
LDNinfo.com
LDN_4_cancer@yahoogroups.com
LungCancerSupportFamily@yahoogroups.com
Hugs and Hopes,
abhinj@aol.com
Dearest Abhi,
So good to see this post! My husband started LDN Tuesday of this week, so I am really glad we found all the information you sent so helpful. He is unfortunately having the vivid dreams and sleep disruption. But that should ease in a week or so.
Can you tell others here what your experience has been? It would be great to share this with newcomers searching for alternative treatments. And it would help me with my husband as he needs the emotional support right about now.
Thank you for all your help and guidance. You are great!
Always,
Peggy
PS - Also, what about the dosage for ALA/C? I haven't started that yet...
Hi Peggy:
Thank you for your reply. I have written my experience several times but, I will repeat it, per your request.
First, I must encourage everyone who is interested in LDN to read and reread the information on the sites that I have given above. The two yahoo groups are discussions much like this one. You can join yahoo and join each group, then sign up for daily or weekly emails. Daily is great because you can follow the posts almost as they happen. Much info coming from those with cancer.
***********************************************
As I wrote earlier today.........
I have NSCLC w/ mets to spine and nodes. Opted out of chemo and radiation.
I have been taking 4.5 mg LDN (at night) for 3mo now. Also, no sugar, white flour or dairy. Taking Flax Oil capsules w/300 ALA, Milk Thistle & Rieshi Mushroom
as recommended by my Pulmonologist. Keeping PH alkaline.
I was advised to have the pharm use acidolphilous as a filler. I have had no side effects. The sleep disturbances only lasted for several weeks.
I use Park-Irmat Parm, NY PH 212-685-0500 as recommended by Dr. Bihari. One mo supply is $38 and includes shipping.
Note: Skip's Pharm is also good but, does not use acidolphilous
************************************************
Peggy;
I was very, very fatigued, very short of breath and had a wicked coughw/mucus.
After 3mo. on the above routine I am almost at pre cancer levels of energy. Some afternoons I do take a short nap. Shortness of breath is gone unless I move like I'm dancing. haha Cough only once in a while and mucus/wheezing has subsided.
I have lost 30# due to my change in diet.....no goodies :-((( mostly veggies, fruit, chicken and fish. Also sipping lemon water or Tom Juice w/ lem during the day.
It is so important to keep ones physical alkaline and lemon helps in this.
I purchased strips to keep a check on it.
Last week I had my 3mo scan and have a Doc app't 10/27. Will update you.
I ordered Flax Oil w/ ALA from.....
BIOnatures..Flax Complete..The Budwig Formula. Just google BIOnatures
I hope this has been some help to you. You can also email me if you have any questions.
Hugs and hopes are on wing to you and hubbie.
abhinj@aol.com
Dearest Abhi,
Thank you so much for sharing your story. I recall when I first came here, I had no idea what LDN was, or that it worked for so many. And now I have some
Good News:
Mårten slept well last night - only one bout of night sweats, instead of 2-3 totally drenching bouts, and he actually had ENERGY this morning. He was happy, and had less pain to his adrenal met. Now, we realize this could just be a coincidence as he is only on this 6 days now, but we are taking any improvements we can get!
Mårten is on a strict diet, no dairy/sugar/or meat, just fish and veggies of all kinds. He had gone totally green...but his fatigue and weight loss, plus anemia became so severe we added fish, and he has not lost weight in over 3 weeks. So we are optimistic, and know the key is the immune system, which LDN enhances.
His next brain MRI is the 29th, so say a prayer, as I will for only wonderful results for you and your scan. Wishing you all the best, Abhi - Enjoy this magical time of year, and keep on dancing! Always, Peggy
PS: I will change his mixture from Irmat to a filler os acidophilous next month, and just ordered the ALA complete.
We are having a heck of a time getting a dr to write a prescription for LDN. Any suggestions? Thanks Nancy
HI Peggy,
I have been on LDN for over 2 3/4 years when told I only had months to live in 2007. I did have surgery, Chemo and radiation in 2005/6 but metastases were noticed in 2007 and told chemo would be only palliative ( 2nd line treatment) and wouldn't extend my life and I would have side effects etc.
I started LDN Feb 12th 2007 and had a bit of restlessness and nervous feeling for a few weeks but all that has gone away. I was told the vivid dreams and such is "The immune" system correcting itself so will go away soon.
Now my husband also takes LDN ( he doesn't have any disease) as a preventative. Dr. Bihari said anyone with a history of disease in family should take as a preventative and he hasn't be sick in over a year ( colds, flu etc) He didn't have dreams, or anything.... just takes LDN same time as me.
Many doctors have not heard of LDN and need education so I printed out the LDN website papers and took to my "new" GP for review. I called first to see if he would look into LDN. (Many doctors won't look into LDN so no point in pursuing it with them.)
After review, he saw that LDN first causes.... NO HARM... and second "MIGHT DO SOME GOOD" so he prescribed it. Now he is prescribing to many of his patients and has thanked me on several occasions since seeing benefits for various diseases.
I take scans at 6 months intervals as monitor the tumors. They have calcifications in many of the centers and some are now dormant.... but I do have small growth in the measurable ones but seeing calcifications also.
If you have further questions, please feel free to ask me ...or join any of the numerous LDN yahoo groups.
Dee
http://www.ldn4cancer.com
Good morning Nancy:
Here is a link to crystal. She keeps a list of Docs worldwide who write scripts for LDN.
There is also a list of compounding Pharmacies that Dr. Bihari recommends. It was suggested that I use acidolphilous as a filler to ward off any gut issues.
angelindisguiseldn@yahoo.com
Email her and she will be happy to help you.
Keep me posted. :-)))
Hugs and hopes,
abhinj@aol.com
Hi Peggy:
Thank you for the update. I just loved the..........
'Keep on Dancing'. Have been dancing most of my life, both mentally and physically. With the help of LDN it is my dream to dance again. :-)))
Yes, this is my favorite time of year. I wrote a poem years ago titled...God Spilled a Rainbow'. In my magical world ......that explains autumn.
You can email me with any ????
Keep us posted on progress.
Hugs and hopes,
abhinj@aol.com
Oppps These are not links they are email addresses.
Please update.
Thanks
Linda
Never mind I don't have yahoo so I didn't understand how the group works. LOL My daughter explained.
Thanks again
Hi:
If you just write an email to angelindisguiseldn@yahoo.com
and ask her your question she will email you back.
Be sure to include you email address.
Good luck.
Hugs, abhi
Thanks for the information. I don't recall hearing about LDN before reading this post. It's such a help to know there are options if chemo. fails, or has too many negative side effects.
Have you heard of people taking it along with chemo, such as Tarceva?
Kind regards,
Tyler
Hi Abhi, I've been taking LDN for 8 months; started on it towards the very end of a 1st line carbo/taxol cocktail in mid Fed. 2009. This tx gave me a "stable" scan in late March. I had another CT-PET scan on August 5, 09 which showed dramatic increase in both tumors and metabolic activity of all nodules and involved lymph nodes. This increase prevented my inclusion in the Lucanix Vaccine clinical trial which was a huge disappointment, especially since I had to pay $450 up front for the preliminary exam and made 3 different trips to UCSD cancer center. My oncologist then suggested Gemzar so I'm now midway through that course of treatment. I got the results two days ago of last weeks scan-- moderate reduction in size and metabolic activity but no new mets! I lost 20# (now way toooo skinny) following the Budwig protocol from April 1, 09 to August 15 and have also been using my Vitamix blender. I'm not ready to pronounce an opinion on any alternative tx right now except that I sincerely hope something works for ALL of us.
Good luck!
Irene
Hi guys,
Interesting information here. I'm still searching for the right compounding pharmacy in Australia to make the LDN. The first batch I got caused awful gut symptoms, which stopped the day I stopped the cellulose-based LDN capsules.
Still toying whether to go with lactose (as recommended in New York) or a drop form with an almond oil base .
I'm going to start on the low dose and work up this time, as feedback I have received tends to indicate that is beneficial in regards to fewer side-effects.
Any expert advice on fillers appreciated.
Art.
Hello Art,
When I was aiding several people wanting to get on LDN last year in Sydney we had no problems in finding very good pharmacies which compound LDN.
Which part of Australia do you live?
Below are some main ones.... but I have personal contacts in Australia who also can help:
http://www.project-aware.org/Resource/Pharm1.shtml
Let me know if you need further assistance:
wishing you well
dee
Hello Dee,
Many thanks for your feedback. It's true there are a lot of compounding pharmacies here in Australia - most dishing out hormones like lollies - but who actually has experience in LDN?
I'm in Sydney and would be most interested in finding out which pharmacies have been issuing LDN and what fillers have they been using?
Most importantly, have those people been taking LDN from various pharmacies in Sydney had any side-effects from fillers.
If you can help me out Dee or anyone else, it would be much appreciated.
Kind regards, Art.
Hello,
I am sure your doctor will tell you where the nearest Low dose naltrexone compounders are in Sydney.
I don't live in Sydney but there are a few below who compound LDN ( most do!!!!) Just call around and ask if they compound "naltrexone"?
So have your doctor who is writing the prescription advise the nearest chemist '"compounder for you.... that is the best as he has use them and knows their fillers etc.
You can also ask the compounder to use specific filler (avicel is the neutral common filler for LDN) to be used in your prescription.
http://www.custommedicine.com.au/products.php
http://www.pharmacyatwork.com.au/home
http://www.freshtherapeutics.com.au/
There are many compounders in Sydney so you have to call around for your nearest supplier.
Dee
Dear Abhinj,
Good for you. This is the route I tried to get my friend to take. You did it. I hope you're doing well and have good quality of life.
Unfortunately my friend went the traditional route with various courses of chemo and clinical trial and was miserable and lasted exactly one year.
I want to hear good news about you. I had a different cancer (cousin to pancreatic) and also refused chemo and radiation and have been using dr. budwig and nutrition instead. I know I made the right decision for me. I hope you did too.
Congratulations. I truly hope you are doing well. I also mix in greens and whey protein. Take calcium, it is a high ph.
Good luck and stay the course.
Thanks Dee. I'm not after a list of compounding pharmacies. I know most of them. But few if any have experience with LDN. That's the problem.
The first one I gave you has experience with LDN so that should help you...
http://www.custommedicine.com.au/products.php
Dee
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