Ann

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ann

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ann

Hi, Took me awhile to find this "my story" got interested in the chat because of Habba. Really glad to know what I have.
I'm 47, married, two beautiful daughters, one in univ. one in Middle School. Have been diagnosed with MS for 11 years. the Habba is really unwelcome!!!!! I live in Carleton county New Brunswick, Close to Florenceville, home of the McCain empire. That's about all I've got for now. See ya.
 
Hey Ann... Glad you found us. Have you ever officially been diagnosed with habba syndrome? (hmmm, deja vu or what?).. The reason I ask this is because when I had my g/b removed, I was advised by the surgical team that I could develop symptoms like this, and that these could be temporary, or lapse slowly over the next few years, or become a permanent syndrome. I think there is a distinction between true habba syndrome and the first two outcomes. But I'm not a doctor, so don't hold me to that.
 
If you have MS I would highly recommend you look into LDN or Low Dose Naltrexone.

The MS patients speak very highly of it for stopping the progression of symptoms and on occasion, even reversing some.

D Bergy
 
Naltrexone

Hi, Thanks for info. I gogled Naltrexone. Looks like it is for Addiction, alchol et. what exse do you know about. I know drugs can be used for may different ailments. Let me know.
thanks.


Ann
 
Google "Low Dose Naltrexone".

You are correct that it is a drug originally used for addictions. In its low dose form it corrects a faulty immune response.

http://www.lowdosenaltrexone.org/

http://health.groups.yahoo.com/group/LDN_Users/

There has been much discussion on it here also. The users have seen some real impressive results. There was a convention recently on its use which is primarily for MS, but also Crohn's and various other diseases.

D Bergy
 
Thanks a Million

I will be busy investigating this. It is so interesting. Mystery, why have I not heard of this from my Docs. I do take a needle, Beta interferon of some type, which I would have to stop. Thank you so much for taking the time. I can going to research this to death.


Ann
 
Well, the reason that you haven't heard of this from your docs is because Low Dose Naltrexone is 'bleeding edge' treatment for IBD or MS (if you'll pardon the play on words). As yet, in the US, the treatment hasn't received FDA approval for these uses which weren't the original intended or prescribed use. There have been successful preliminary studies, and the results of those have been extremely promising. But for most medicos, straying outside the realm of FDA approved usuage or treatment is a bit scary... (Not so much for the patient, more for their own lawsuit exposure). As for the actual risk to the patient, Naltrexone has been around for a long time, and was primarily used for the treatment of alcohol or drug addiction. And the dosages used in those cases were MUCH, MUCH higher than a typical dosage regimen for IBD. I haven't researched the MS connection, so I can't tell you what those dosages are like, but for IBD it's typically only 1/100th what an addict would be presribed. I am desperately trying to convince my doctors to trial me on it. Ethically, it is within their capacity to prescribe this regimen, but I have no idea what it would mean as far as the doctors insurance providers are concerned. There are a number of doctors who have adopted this treatment, and the various sites on Low Dose Naltrexone can provide you with info, if you want to pursue it. I have found an American doctor who will take Canadian patients remotely, and also a US pharmacy that will ship to Canadian patients, just in case my local doc isn't in a position to prescribe this for me. There are several members here who are considering this, some even pursuing it. However, none of us here are medically qualified to recommend this for others, it's just something we feel in strongly enuff to pursue on our own. Do your research, and you may feel likewise.
 
Ldn

Kev,
Thanks for info. You are definately a source of info!!!! MS Society of course, does not recommend this thype of treatment as no "clinical trials" have been done. Spoke to my Neur. 2 days ago as I am going on mild dose of Steroid. Asked his about LDN. He says, in his non commital, unexcited voice. Oh, I've been hearing more about this lately. A patient 2 weeks ago had come in and demanded it. He did prescribe. Asked his how she was doing, didn't know. He impressed that until clinical trials are done. docs. do not know how to treat severe side effects as there is so much unknown. I told him clinical trials , in my mind, will not be done as the drug is not a $20,000/yr expense. No drug company is going to invest too much time as there is not a big pay back. He grunted in agreement. I asked him if he could please keep me informed if he hears any more. I am not going to hold my breath. It's hared to know what to do. Again, thanks for info.

Ann
 
Well, there is knowledge out there on the side effects of Naltrexone, because it has been used for addiction treatment. Again, those are at much higher dosages. Even so, those known, higher dose side effects compare quite favourably to many of the drugs used to treat IBD. From what I've read, in Low Dose treatment, side effects are virtually nil. Bear in mind, this isn't first hand info.. I haven't tried it myself YET! I believe that the typical LDN treatment shows remarkable results over a timeframe of weeks to months.. I believe (from memory) one of the trials showed results over a 12 week timeline. So, I 'believe' that it doesn't work over nite so to speak. In my own case, based on the known side effects of the 'approved' drug I'm faced with AND the known benefit percentages of same Vs the known side effects of regular dose Naltrexone AND the benefit percentages of initial trials, I personally am leaning toward LDN. Even based on the exxagerated risk of the much higher dosages. But I hope that it will prove to be literally free of side effects. I'm going to shutup now, cause I'm starting to sound like a salesman.
 
I told him clinical trials , in my mind, will not be done as the drug is not a $20,000/yr expense. No drug company is going to invest too much time as there is not a big pay back. He grunted in agreement.
Yup, that is what the rest of people are seeing..

Now, that being said, there have been some trials of LDN: http://www.lowdosenaltrexone.org/ldn_trials.htm Many of us, myself included, are working are way into getting LDN. I'm going to bring it up with my GI when I see him, going to print up a bunch of info, links on the Crohn's trials, references, etc. and see how it goes.

Two more sites for ya:
http://ldn.proboards3.com/index.cgi
http://www.ldners.org/ (Low Dose Naltrexone for Multiple Sclerosis)

- Ken
 

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