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Posted: Mon May 05, 2008 1:34 pm
by cheerleader
Hi Keri-
I agree with what Dimitris says. This was a conscious , albeit potentially risky, decision. It was based on a "gut" response.

When Jeff was diagnosed, he was so toxic...high liver enzymes, jaundice, fatigue, brain fog and major constipation (his neuro said it wasn't related to his MS, but I felt it wasn't coincidental- he was in BAD shape). I started him on a liver cleanse and detox program, including anti-virals and anti-oxidants. His symptoms were reduced immediately.
I decided to try the anti-oxidant/anti-inflammatory path, even though,
as you say, this "boosts" the immune system, because he was doing so much better.

I cleared this nutritional program with his neuro and GP (on page one), because I didn't want to do harm, and they said to go ahead. They both felt that we'd know if it wasn't working, because his inflammation and disease process would continue.

He started doing better within a month, the liver enzymes returned to normal, he had regular bowels, his normal color returned, he felt stronger, and a year later, his 2nd MRI has since shown no disease progression and nothing enhancing.

My logic in this pursuit was finding balance in his body, replenishing his vitamin and mineral stores, healing his intestines, and eradicating any viral/bacterial overload. It worked. I suppose it could have backfired. I believe Jeff's first MS flare was related to his gut, liver and diet.

As Dimitris feels in his wife's situation, I think Jeff's first MS flare was set in motion by an over-extended, exhausted and out of balance immune system, turning on itself. We helped return Jeff's immune system to balance, - as reflected in return of motor function, reduction in inflammation, and halting of progression.

hope this makes sense out of the garlic conundrum- :)
AC

Thank you...

Posted: Mon May 05, 2008 10:11 pm
by RedPenguins
AC and Dim - thank you for taking the time to share your views! I like making informed decisions - when I can anyhow...but as we know, with MS there is so much that is unknown! I feel like every time I ask an "expert" a question, the response is some form of "we don't know"....Argh! I'm so glad to hear that Dim's wife and Jeff are doing well on these regimens. I may look into adding some things to my arsenal... I do take fish oil pills - omega 3-6-9... As far as asking my neuro, he just shrugs or rolls his eyes at me when I ask some things. Yes, I know, get a new neuro... sigh. I guess the truth is - I ain't gonna like any neuro that looks at me and says that I have MS and he can't fix it. LOL

I feel like I already take "too" much - antidepressants, allergy meds, BC pills, etc. For fatigue, I wear this patch instead of taking pills...

Is there any particular order that you introduced these supplements? Oh, I should probably go back and re-read the thread.... sorry...you may have already said that. Or maybe it doesn't matter....

Thanks again!!

~Keri


Posted: Mon May 05, 2008 10:42 pm
by DIM
Keri if you read Dr Bob Lawrence's fact sheets at www.ldnresearchtrust.org/forums, Dr Ashton Embry's BBD and supplements at http://www.ms-diet.org/ and search the related clinical trials you'll find anything you need in order to choose the best for you.
In my humble opinion except the known supplements that work I believe 2gr/day curcumin (in a form with bioperine or quercetin/pectin or other enzyme for absorption), inosine 2x1gr/day and N-acetyl cysteine >500mg/day do the trick as these three elements not only stop nerve degeneration but promote remyelynation and help against viruses-bacterials, liver health etc
Good luck with your search!

Posted: Tue May 06, 2008 9:49 am
by cheerleader
Keri...
it's overwhelming, believe me, I understand. Jeff could barely get up and walk when he was diagnosed, so I took it upon myself to learn. I already knew the importance of omega 3 from helping my son with "ADHD"...really just an undernourished frontal lobe which results in a hyperactive mind. The fish and flax oil helped him so much, I knew there was a way to help Jeff thru nutrition. Supplements are only another way of bringing nutrients to a hurting body. They are not another "drug" per se. Keep taking the pharmas, you need them. But feed yourself, too.

Go to Vitacost.com and get ready to spend some $
Get some NAC, CoQ 10, inosine, omega 3, vitamin D and a good multi vitamin with minerals (zinc, calcium, magnesium) That's a good "starter kit."
I know, it looks like even more pills, but these are nutritional supplements. Take them, see if you have any difference in your vertigo or fatigue. Your body was designed to heal.

Neuros are specialists and the "experts." The word amateur comes from Latin..."one who loves." This is the problem with our society in general. We're encouraged to be accomplished brains on sticks, and we forget the body. We're told to be really good at ONE thing, and we forget that we are human, and a holistic system. We need music and laughter, good food, sex, time in the garden, reading, hobbies, and a fine cabernet. And sometimes we need to replenish our bodies with nutrients. So call me an amateur healer, you can be one, too.

If it makes you feel any better, don't tell the neuros. It can be your little secret :wink:

AC

Posted: Tue May 06, 2008 7:19 pm
by cheerleader
Keri-
oops, I forgot.
You can add B-12 sublinguals to your shopping list, too.
BTW, I'm not a real dr., I just play one on the internet.
So don't sue me :)
AC

Posted: Wed May 07, 2008 5:12 am
by jimmylegs
b-12 x 1000mcg (i don't even know if they come any other way when u buy sublinguals but hey just throwing it out there)

Posted: Thu May 08, 2008 2:04 am
by CureOrBust
methylcobalamin, I get 5000mcg (5mg) sublingual.

Posted: Thu May 08, 2008 5:26 am
by jimmylegs
that's wicked huge COB! never seen those before.

Posted: Fri May 09, 2008 3:40 pm
by CureOrBust

Posted: Sun May 11, 2008 11:53 am
by DIM
AC I saw you start recently to your husband Minocycline are you sure it doesn't interfere with inosine, NAC or any other supplement?
I am sure you should stop one of them but can't remember which one, I did have the same thoughts for ABxs as you and searched it for my wife some time ago.

Posted: Sun May 11, 2008 7:03 pm
by cheerleader
Thanks, Dim,

I believe we are OK with the supplements. Jeff takes his probiotic and supplements 4 hours after the minocycline. I know that Sarah (Anecdote) took NAC with her antibiotic protocol for cpn infection. I also checked with all of our docs, and they did not find any problems with the supplements and the antibiotic, but I'll do a bit more research to be sure.

Jeff's doing fine with everything. I was worried about his stomach, but all is well.

Thanks,
AC

Posted: Sun May 11, 2008 7:41 pm
by CureOrBust
cheerleader wrote:... but I'll do a bit more research to be sure.
Please let us know what you find, as although I am a little lazy with the NAC, I do mix mino and inosine.

Posted: Sun May 11, 2008 11:52 pm
by DIM
A quick view of NAC toxicity although many doctors as Ashton Embry suggest it for daily use with no problems:
http://en.wikipedia.org/wiki/N-acetyl_cysteine
Inosine I am sure will not bring on problems as it's a purine (nucleotide) of course individuals should check often their uric acid levels.

Posted: Mon May 12, 2008 12:15 am
by DIM
Just found it AC in my PC, doxycycline should not be taken together with calcium and if I am right magnesium (to be sure just avoid all minerals at the same time of the day), it causes blood thinning (especially together with fatty acids) and sunlight should be minimized as it may cause exaggerated sunburn!
Hope it make sense!

Posted: Mon May 12, 2008 2:46 am
by SarahLonglands
The older tetracyclines should not be taken at all with calcium or magnesium, but should be taken two hours apart from them by which time they will have well passed through the stomach. Doxy and mino are less affected, so you can take, say, a small glass of milk with them to settle the stomach, just leave the hard stuff 'til later. Everything else is fine, or if it isn't it didn't do me any harm!

Sarah