LDN so far-will start antibiotics in Feb. 2006

Tell us what you are using to treat your MS-- and how you are doing.

LDN so far-will start antibiotics in Feb. 2006

Postby OrestesPsych » Sat Nov 19, 2005 3:18 pm

Hello everybody,
I am Orestes, a 59 yr old male from Athens, Greece, who was diagnosed with MS, chronic progressive, about 10 years ago. I am an architectural painter by profession, and since I retired, draw for pleasure highly detailed, quirky caricatures of famous people.
I've been in a wheelchair with left leg/left arm weakness for about 3 years. I can walk very short distances holding on to a wall. There are no additional health problems, except for TMJ.

I was on weekly Avonex injections for about a year, until my first wife Athena who lives in America learned about MS from THIS SITE, and introduced me to the Swank diet (Roger MacDougall/Dr. Ashton Embry) and LDN. (Athena is also typing this, since I have no computer).

I've been on the diet for one year now, since Nov. 04, and on 4.5 mg/day LDN from Skip's pharmacy since July 19, 05 (I stopped the Avonex then). I took 1.5 mg LDNx1mo, then 3mg LDNx1Mo, and since then, 4.5 mg/day.
I experienced no adverse reactions to the LDN, at all.
I'm coming to the States at the end of January '06 for at least 3 months, and I'll start Sarah's antibiotic regimen then.


:) I DO feel stronger, holding my body up longer and better, since I started LDN. Urinary frequency at night has also decreased very much. In general, I feel better overall.
Proof of that is indisputable in my drawings, where the fine motor control improved very much, in comparison to drawings from before.

I know my diet and supplementation will be better enforced when I get to the States because thanks to this board, Athena will strictly do the food/supplements/juicing/antibiotics, just like they're written here. The fact that she used to be an intensive care nurse helps her very much in understanding things and transmitting them to me.

I'm glad that I don't have to suffer the 2-3 days of feeling beat up after each Avonex injection, and also think that treatments that enhance and normalize the body's natural functions make more sense than others that suppress them.

Athena has spent countless hours reading, learning, copying, translating from the posts here-in a few words-this site changed my life and I know will help me even more in the near future.

I'd like to express my IMMENSE APPRECIATION for this particular website, and the contributing members-what a difference from other sites!!!!!!!!


I hope you will welcome me in your wonderful community-We'll beat this thing together!

Orestes
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Postby CureOrBust » Sun Nov 20, 2005 5:26 am

we are glad to have you here, but I wish none of us had to be here.
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Postby SarahLonglands » Sun Nov 20, 2005 7:28 am

Hello Orestes, this is Sarah welcoming you to the site! As you say it is a big difference from other MS sites, since, as you say, we do actually want to beat this thing together, rather than just accepting it and making the most of it. Athena sounds like a very excellent person to have to help you.

I'm glad that you found so much help with LDN: the fine motor control in you drawings is evidence enough. I have never taken it, but started straight out on the abx. Before that my right arm was completely useless, but gradually it came back, at first very shakily and if I hadn't got any better than that I would have had to give it up. Please keep in touch with us all when you start the antibiotics because for some people it isn't easy. You could always get in touch with David, my husband, whose email address is toward the bottom of the first page of his site:

http://www.davidwheldon.co.uk/ms-treatment.html

Also you can email me by clicking on the email button at the bottom of any of my postings. There is also another new site, http://www.CPn Help.org, set up by Jim, a fellow contributor here, where we all share information regarding treating not just MS but other diseases such as fibromyalgia and chronic fatigue, with the same protocols.

Take care and keep in touch,

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby mrhodes40 » Sun Nov 20, 2005 9:42 am

Welcome Orestes! I agree with Sarah, your Athens is a great person to help you along! I also take LDN. It gives me a great sense of well being compared to before. I feel more energy and things like that. My walking still deteriorated on it though (on it for a year and a half) so I am now on abx for almost three months. I start flagyl soon.

So far I have more energy and can do more than I could before. I can't walk a lot better yet, but my "good walking" lasts longer than it did before:
I do not wear out like I did, and I recover faster when I do wear out.
My thread is Marie's abx log.

Glad you are here to join us!
Marie
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Postby Katman » Mon Nov 21, 2005 6:53 am

Hello Orestes

We are all delighted that you found us. I said when my sister found this site four months ago that it was like stumbling into a group of old friends. Those four months have been a rewarding lifetime. A warm welcome to you and to Athena and her selfless and knowledgeable help.

I have a question for anyone in our group. As I have mentioned before I have an almost uncontrollable (well, uncontrollable) craving for cheese and milk. This has been a huge part of my diet for decades and I simply cannot exclude it. What does this do to the outcome of my otherwise stringent adherance to abx and supplements?

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby SarahLonglands » Mon Nov 21, 2005 7:24 am

Nothing, so long as you don't indulge your craving too close to the doxycycline. It must be alright because you are getting better. Besides, it gives your goats a purpose in life! :wink:

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Melody » Mon Nov 21, 2005 7:26 am

It is the saturated fat I believe you should worry about the most so 1% milk or skim as well as low fat cheeses but not to much. Not sure what it means to your abx or supplement. This by the way is going by my theory of intolerances. John is not intolerant to dairy as we had him tested so we did not eliminate it. We have added polyunsaturated fats so as to bring up his good fats ratio. In order to maintain balance with his poly we cook only with olive oil as it is a good source of mono fats. If you are on the swank diet Dairy is out.Not sure if this helps as it is just an opinion :wink:

One cup of 1% milk gives you 3 fat grams compromised of 2 sat fat and 1 mono. Try this site it will help put fats in perspective www.fitday.com. You should have no more than 10 grams of fat from saturated fats in a day. I keep John between 20-25 grams of fat total.Keep in mind the protein from dairy is also hard to digest.

As to dairy hubby has 1/4 cup of cottage cheese 1% everyday as it is needed to digest ground flax. That adds 7grams of protein to his daily allowance of 20grams(hard to digest proteins). He also has 1 cup of 1% milk which adds 8 proteins. We are now up to 15 of what I consider (hard to digest proteins). Again my opinion only
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby Katman » Mon Nov 21, 2005 8:40 am

Thank you, Sarah and Melody

My choloestrol is high but my ratio is more than excellent. I am 5' 2 1/2 " and weigh 115# with clothes and shoes. Never have I been overweight. I cook ONLY with olive or canola oil. We eat mostly fish and chicken with a little hot goat sausage in our split pea and bean soups and vegetables raw and cooked. But goats don't give 1% milk. Incidentally, 70% of people who CAN'T drink cow milk have no problen with goat milk. Neither of us has an intolerance, we just like it. Also, it is the milk of choice for many animal orphans, including (race) horses. It is short of folic acid.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby jora1 » Tue Nov 29, 2005 3:37 pm

Hello , this is my profession because i am a dotor.i want to suggest you that whenever this urinary infection problem occur then you should have precautions .infection is rapidly spread on body,so just you should have taken medicine according to their nearest doctor. Acutally i also tell you about get rid of this infection by Himplasia drugs.Himplasia is produced combining herbs like Tribulus terrestris, Caesalpinia bonducella, Areca catechu, Asparagus racemosus and Crataeva nurvala.this have no side effects. you can see this link or get information & buy drugs.

http://www.drugdelivery.ca/s33670-s-Himplasia.aspx
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Hello again Orestes!

Postby SarahLonglands » Tue Nov 29, 2005 6:30 pm

Hello again Orestes,

We are looking forward to hearing more from you when you get to the States next year. By that time I should be well into my change of painting technique: giving up oils because of the organic solvents and starting with acrylics, which will be very different. I will still use watercolours, of course. I will post one of the first this I do. If I am happy with it, that is.

Jora, have you posted in the right place, because I can't find any reference to a urinary infection, unless you misunderstood what Orestes meant by "Urinary frequency at night has also decreased very much." He just means that he used to have to get up a lot in the night to go to the lavatory, but now he doesn't.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Thank you so much!

Postby OrestesPsych » Sun Dec 11, 2005 3:29 pm

CureOrBust wrote:we are glad to have you here, but I wish none of us had to be here.


Hi cureOrbust,

Thank you for the welcome! It's true-it would have been better not to have to be here, but.....look at it this way (in my case): This MS has been my greatest problem, yet it became the means by which I found that my first love really cares an awful lot about me. Life is strange like this sometimes...the ways it finds to make a point :!:
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Hello Anecdote (Sarah) !

Postby OrestesPsych » Sun Dec 11, 2005 4:32 pm

Anecdote wrote:Hello Orestes, this is Sarah welcoming you to the site!


Dear, dear Sarah,

I'd like to tank you SO MUCH for your note-I didn't expect it, and was hesitant to check back in the forum because of ...fear of rejection I guess?? How silly of me-well that's the end of that!
I have studied everything that has been on the Net about you and Dr. David, your husband-your posts, the regimen .pdf, his website-everything. You have left nothing unanswered, and have devoted so much time and caring to your posts and your fellow MS'rs-I have no words to express my appreciation and thanks.
I had an MRI done to use as a fresh baseline before I come to the States, as my previous MRI was too old for that.
I am now preparing my paperwork (visa, passport, etc. ) for the trip.

Athena sent me L-Tryptophan in 500mg. capsules from iherb.com, and I take one with the LDN each night. Any thoughts on that would be welcome!

Meanwhile, I've been searching for recipes for bread, etc. since Athena has a bread machine and wants to bake the bread at home, to avoid additives, preservatives, and such. (Here in Greece I eat bread from corn flour). I'd love to share with you everything that can make our life healthier, easier and more pleasant!!! :
As luck would have it, Athena found two incredible collections of recipes from an eBay powerseller with 99.9% excellent feedback: The first one is over 300 "gluten free, wheat-free recipes", and the second is over 300 "Gluten-Free, Dairy-Free and Casein-free recipes"-each for $2.99 (downloadable .pdf) on eBay.

They are written very nicely by a lady who has celiac disease, whose eBay ID is kurlykurly1. It was not an auction; $2.99 is the "Buy it Now" price. I got it immediately in my email and was delighted, after having seen the high prices of such cookbooks on Amazon. This is a constant link to her seller's page on eBay : http://search.ebay.com/_W0QQsassZkurlykurly1QQhtZ-1

I will post a delicious recipe for her quiche in the diet section shortly.

I also found an incredibly inexpensive source with free shipping of Organic herbs on eBay, and received them very fast in the mail. Now, I can add powdered Aloe Vera, powdered Beetroot, organic dried Alfalfa, and lots of organic TURMERIC, in my carrot juice.
I also made delicious mountain tea from her dried organics (Lavender,Anise seeds, Chamomile, Jasmine flowers), in the free cotton steeping little bag that she included. It's so nice and relaxing to sip it at night!
Her name is Lisa Galasso, her web store is www.theHerbGoddess.com

As an example of her low prices, Turmeric is $2 for 1 ounce, with free shipping.
This is her eBay store http://stores.ebay.com/The-Herb-Goddess ... E-SHIPPING.

I'm not sure if these links will post-let's see....
Last edited by OrestesPsych on Sun Dec 11, 2005 11:14 pm, edited 1 time in total.
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Hello mrhodes40 (Marie)!

Postby OrestesPsych » Sun Dec 11, 2005 4:51 pm

mrhodes40 wrote:Welcome Orestes! I agree with Sarah, your Athens is a great person to help you along! I also take LDN. It gives me a great sense of well being compared to before......
Marie


Thank you so much for your welcoming note Marie!
I'm glad you feel better on LDN. I still remember a slight warming sensation I felt when I first took it-it was very pleasant!
It's really useful that you describe "in what ways" you feel better; makes it easier to understand for people like me (Athena), who analyzes everything :D
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Thank you for the welcome Katman (Rica)

Postby OrestesPsych » Sun Dec 11, 2005 5:05 pm

Katman wrote:We are all delighted that you found us. .... As I have mentioned before I have an almost uncontrollable (well, uncontrollable) craving for cheese and milk....Rica


Hi Rica,

Thank you so much for the warm welcome-it truly feels like being among old friends here!
I got this lovely book, "New Choices in Natural Healing" on eBay for about $1, and it repeated something I've often seen before, that we may be allergic to foods we crave. I can sure empathize with loving cheese and milk!!!!!!!
Athena is crazy about organic whipping cream mixed with honey, so she doesn't buy the honey anymore-it was IMPOSSIBLE to resist.
Too bad it's impossible to buy unpasteurized raw milk in the States, unless you co-own a cow or goat, and drive miles each week to get the raw milk (they have these cow co-ops in Virginia).
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Postby SarahLonglands » Mon Dec 12, 2005 1:14 pm

Hello Orestes,

You asked about my thoughts about l-tryptophan. A good place to look about what I think is here:

http://www.CPn Help.org/?q=tryptophan_depletion_as_a

Basically, low levels of l-tryptophan are found in people with MS because it is a way of holding back CPn infection.

You are probably better taking melatonin, especially if you are taking it as an aid to sleeping, but don't bother changing until you get to the States now. It is made from l-tryptophan by way of seratonin in the pineal gland. You can find out more on this page of David's:

http://www.davidwheldon.co.uk/supplement_rationale.html

Melatonin

Melatonin (MEL), an indole, was originally described as a hormone biosynthesized from L-tryptophan within the pineal gland in the brain; it was found to regulate sleep patterns. Since its discovery, this remarkable molecule has been found have numerous and diverse actions in the cell. MEL is a potent antioxidant, protecting mitochondria from oxidative stress [reviewed by Leon J, Acuna-Castroviejo D, Sainz RM, Mayo JC, Tan DX, Reiter RJ. melatonin and mitochondrial function. Life Sci. 2004 Jul 2;75(7):765-90.] MEL also acts directly on the electron transport chain, increasing ATP synthesis while preventing the oxidative damage associated with such an increase. [Acuna-Castroviejo D, Escames G, Leon J, Carazo A, Khaldy H. Mitochondrial regulation by melatonin and its metabolites. Adv Exp Med Biol. 2003;527:549-57.] These authors also found that MEL restored levels of the important antioxidant glutathione.

MEL is a readily diffusible mobile molecule and is able to pass into any tissue, cell or cell compartment with ease. [reviewed by Hardeland R, Pandi-Perumal SR. melatonin, a potent agent in antioxidative defense: Actions as a natural food constituent, gastrointestinal factor, drug and prodrug. Nutr Metab (Lond). 2005 Sep 10;2(1):22.] These authors observe that, unusually for a hormone, MEL is a normal dietary constituent, and is found in yeasts and plants; walnuts are a particularly rich source. Dietary MEL can markedly influence blood-levels. [Reiter RJ, Manchester LC, Tan DX.Melatonin in walnuts: Influence on levels of melatonin and total antioxidant capacity of blood. Nutrition. 2005; 21(9): 920-4.] The fact that MEL is a normal dietary constituent removes some of the hesitation which one may have in using it for supplementation..............


I don't really bother with a gluten free diet, I must say, but that quiche recipe you put in the diet section seems very appetizing!

You said this to CureO:

Thank you for the welcome! It's true-it would have been better not to have to be here, but.....look at it this way (in my case): This MS has been my greatest problem, yet it became the means by which I found that my first love really cares an awful lot about me. Life is strange like this sometimes...the ways it finds to make a point


I think that is very sweet and nice. I hope you have an excellent time when you arrive.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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