Re: Re: Has LDN halted progression

[Guest guest]

I don't think checking for Lyme is just an excuse. There are a few people

from the chat site that this actually had been the case. Some of them had

stated that the regular test had come up as not having Lyme, but when they

had a more extensive test completed they were determined to really have

lyme. One person in particular comes to mind, and she felt so much better

once she got on the anti biotics. We all care and most of us are willing to

concede that LDN does not work for everyone, but wanting to share if there

is anything else that might be the key.

Thanks, Aletha

PS: Below is a much earlier message from a chatter (Martha) regarding Lyme.:

>> The only common reason that has come up here for people not

> responding to LDN is miss diagnosis they have Lymes Disease. Can I

> suggest you get hold of the book Lymes Disease and Rife Machines ISBN

> 0-9763797-0-8 www.lymebook.com Obviously that may not be the reason

> in your case but it must be worth considering.

>>

>> Dave

>>

>> In a message dated 7/14/2005 2:42:37 AM Central Daylight Time,

>> ratfink930@h... writes:

>>

>>

>> > My wife has been on LDN for 3 years and there has been no halting

>> > progression never mind improvement in symptoms.

>> >

>> > We have followed varioius advice and tried doses between 2 and

> 4.5 with no

>> > benefit at all.

>> >

>> > Still taking it but really not sure why. Disappointed because we

> really

>> > bought into the idea that this could do some good.

>> >

>> > J

>

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[Guest guest]

sometimes we need nutritional support too.... I have found a great supplement. Anyone interested - please email me directly.

lg

[low dose naltrexone] Re: Has LDN halted progression

I know I was checked for Lyme, and it was negative. The LDN didn't work for me, and it was MRI confirmed. Lyme is starting to sound like another excuse. Might be as simple as the LDN just doesn't work for everyone.> The only common reason that has come up here for people not responding to LDN is miss diagnosis they have Lymes Disease. Can I suggest you get hold of the book Lymes Disease and Rife Machines ISBN 0-9763797-0-8 www.lymebook.com Obviously that may not be the reason in your case but it must be worth considering.> > Dave > > In a message dated 7/14/2005 2:42:37 AM Central Daylight Time, > ratfink930@h... writes:> > > > My wife has been on LDN for 3 years and there has been no halting > > progression never mind improvement in symptoms.> > > > We have followed varioius advice and tried doses between 2 and 4.5 with no > > benefit at all.> > > > Still taking it but really not sure why. Disappointed because we really > > bought into the idea that this could do some good.> > > > J

[Guest guest]

Did you progress just by MRI confirmation or did your symptoms increase? I think a good standard of how we are doing is not necessarily these flawed diagnostic tests that so commonly miss things or misread them but how you are actually feeling. A negative spinal tap isn't even conclusive proof that a person doesn't have ms so I have lost much faith in all the 99% accurate procedures. I hope your symptoms have gotten better because how you feel each day is the best measure. Kind Regards, Kathy

[low dose naltrexone] Re: Has LDN halted progression

I progressed on LDN, with MRI, confirmation. And also tested negative for Lyme. Just because someone is progressing does not mean they have lyme instead.> J> > I'm really not seeing much in the way of improvement or symptom relief, but > I keep tsking it b/c I believe it has stopped some progression. I was hoping > for the great things I had read, but that didn't happen. I've been taking > it for 15 months.> > Another thing is that if the symptoms are progressing, it seems that lyme > diease is the culprit. Apparently LDN does not do anything for lyme. A lot of > people who were seeing nothing on the ldn tested positive for lyme.> > It's important to get a lyme literate doc and the test to get is the Western > Blot from Ingenex labs the IgG and IgM. Has your wife been tested?> Arlene

[Guest guest]

In a message dated 7/14/2005 11:02:06 PM Eastern Daylight Time, chiefman596@... writes:

I progressed on LDN, with MRI, confirmation. And also tested negative for Lyme. Just because someone is progressing does not mean they have lyme instead.

Hi

It has been said that lyme disease is a stealth pathogen and the spirochete can burrow deeply into several parts of the body and 'hide'. There are a lot of false negative readings depending on the test.

I understand the Western Blot IgG IgM from Ingenex labs are the most accurate. I've heard of people who tested negative on some tests, but then tested positive on the Western Blot. After they had the treatment for lyme, they started to get better. From what I understand that can be a long process.

I tested positive for lyme in one test and plan on getting the Western Blot to confirm. If anyone is interested in reading about lyme and how it can develop, here is a site that explains some interesting things about it.

http://www.springboard4health.com/notebook/health_lyme_disease.html

I absolutely agree that just because someone is progressing doesn't mean they have lyme instead because we are all so different, but I want to research everything and possibly find a way to stop whatever it is that I have.

Be well

Arlene

[Guest guest]

,

Concerning Lyme neither test is that accurate.

Lyme bacteria can change shapes. It hides by changing to a cyst form or

L form. Also they have found many co-infections.

[Guest guest]

I know they say that but I'm not so sure I believe it. I don't think any of the ms specialists know enough about this condition to say that with 100% conviction. Pageler, the man who has followed Swanks diet for years has enough lesions in his brain to be an invalid and he has a very good life, My point is, he kept getting more lesions for decades but symptoms disappeared so who cares if they think you are progressing from an MRI. Don't get me wrong-I don't consider it good news. I just know there is much more to be known. If you really think you need more than the LDN, you might check into injectible calcium EAP. It worked miracles for me. Best Wishes, Kathy

[low dose naltrexone] Re: Has LDN halted progression

Yes, the symptoms did increase. Secondly, your smyptoms don't have to get worse to have MS progression. The disease can still be attacking your body and you won't even notice it.> > J> > > > I'm really not seeing much in the way of improvement or symptom > relief, but > > I keep tsking it b/c I believe it has stopped some progression. I > was hoping > > for the great things I had read, but that didn't happen. I've > been taking > > it for 15 months.> > > > Another thing is that if the symptoms are progressing, it seems > that lyme > > diease is the culprit. Apparently LDN does not do anything for > lyme. A lot of > > people who were seeing nothing on the ldn tested positive for lyme.> > > > It's important to get a lyme literate doc and the test to get is > the Western > > Blot from Ingenex labs the IgG and IgM. Has your wife been tested?> > Arlene> > > > >

[Guest guest]

There is a researcher in Michigan, I believe Bateman is her last name

that originally was testing for CFS and found Cyst and L forms and then

tested MS and found them also. In the beginning she was finding none in

controls but now they are finding these bugs in an alarming amount of

controls, thinking it is an epidemic.

Some believe Lyme is a sexually transmitted disease. It is the same

form of bug as in syphilis.

Lyme like MS like CFS has no really good test.

[Guest guest]

All right -- I've heard your comments and will give it a longer trial; will keep the group posted from time to time... Thx for all your positive comments, which give e HOPE! And I'm on 4.5, filled with Avicel, which I get from a local compounder, The Chemist Shoppe in Grand Rapids MI. Does anyone know of how easy it was to transfer a prescription from one provider to another, or will I have to go back to my neuro to get another prescription for Skips? I will try to get my provision changed to Skips, however, to see if that helps.

And I'll let the group know my if my spasms ease after the pump is installed on Aug 15th. No, I've never tried the liquid format, but I fail to see the difference of emptying a caplet into a spoon and mixing it in water, vs.. chasing down a caplet with a swig from my handy water bottle -- seems to be just the same thing to me...

Best rgds, Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of BrenSent: Sunday, July 17, 2005 11:25 AMlow dose naltrexone Subject: [low dose naltrexone] Re: Has LDN halted progression

> Hi all. After a 3-mo trial of LDN, I'm ready to call it quits. It isn't> doing anything for me at easing the spasms, so the next step for me is> installation of a Baclofen pump on Aug 15th to ease them, which a test I had> taken last March apparently proved that I would benefit from. I'd hoped LDN> would help my PPMS, which has pushed me into a w/c 4 yrs ago, and has now> robbed me of my ability to transfer independently. It has been interesting> to hear everyone's experiences on LDN, but in my own personal experience, I> don't believe LDN had any effect on my MS at all.> > Best regards, Rae>============Rae,Don't give up so soon.LDN is not for symptom improvement. LDN's main purpose is to stop disease progression and if one does get symptom improvement then that's just an added plus. The website reads that only about 2/3 of people who go on LDN will see symptom improvement.Baclofen by pill or pump can be taken right along with LDN with no problem. Three months on LDN is not near enough time to see if it will keep you from progressing. I think you will be making a mistake at coming off it this soon.If your disease progression is not being stopped by LDN in 6 to 9 months then you need to look at these to see if there's a possible problem...What dose of LDN are you on 3.0mg or 4.5mg? Where do you get your script of LDN filled? Do you know the filler that is used? Have you ever tried the liquid LDN? Sometimes people have absorption problems and may need a liquid version of LDN. Don't give up LDN until you've tried the liquid. Tonight try emptying out your capsule into a tablespoon. Then add droplets of water, tea or orange juice and dissolve the LDN and down it chasing it with a few sips of water. If you are not on 4.5mg, you most likely need to be for your progressive form of MS. You may even be one that 5.0mg or even up to 6.0mg is needed.Get the Baclofen pump but try and give LDN at least a 9 month trial.

[Guest guest]

You might be able to call the neuro and just ask him to phone or fax in the script to Skips..

[Guest guest]

Rae, it may or may not change the course of things but just try the liquid. It can't hurt and we all want the best for you. Just take a leap of faith and believe that it can be different because it has been for others. When I speak to people about progression of symptoms on calcium eap, a lack of pepsin in the body can be a major reason for therapy failure. This could be the same thing. If you don't have the right intestinal balance, you won't even be able to breakdown that capsule . They have done autopsies on people and found undigested vitamins in their colon so just take the liquid and I will pray for you tonight as I'm sure many others are as well. Kathy

[low dose naltrexone] Re: Has LDN halted progression

No, I've never tried the liquid format, but I fail to see thedifference of emptying a caplet into a spoon and mixing it in water, vs..chasing down a caplet with a swig from my handy water bottle -- seems to be just the same thing to me...> > Best rgds, Rae>===========Rae,In some people liquid LDN over capsules can make a difference. Rhonda on this forum is one and at GoodShape's forum is another the liquid LDN made a vast difference for. They both used capsules and I know that kept progressing on the capsules but on liquid LDN his progression has halted for over a year now. Just keep the liquid LDN in mind.

[Guest guest]

In a message dated 7/18/2005 12:03:14 AM Eastern Daylight Time, TwisterAlley2@... writes:

In some people liquid LDN over capsules can make a difference.

made a big difference for me, too. I had taken capsules since April, 2004. I tried capsules from The Compounder, Skip's and Irmat's with different fillers. I still was not sleeping well and getting up 3-4 times per night to the bathroom and tossing and turning.

About 10 days ago, I started taking the homemade liquid per goodshape's instructions. It didn't happen immediately, but in the last 3-4 days I have slept very soundly, and only gotten up 1 time. Even my daytime bathroom visits are less and not as urgent.

I also feel more alert and a bit stronger during the day. I still start weakening later in the pm, but I'm hoping with time this will get better.

I really think the liquid will be better for some people, albeit not quite as convenient as the capsules.

Arlene