The phone call I made to my Alternative GP, today, sure paid off! He has agreed to prescribe from the Wheldon protocol for me, in spite of his belief that Lyme is the primary MSi culprit. He told me, "I don't care whose protocol you are on, as long as it gets you well." And, he did say that he thinks Flagyli is too "brutal." So, I suppose we shall see.
Tomorrow I go in for my Azithromycin script to add to my 200mg/day Doxycycline and 15 drops/day Samento. Also, he told me that he wants to test me using this lab for CPni, Lyme, and other infectionsi: http://www.mdlab.com/html/home.html
Has anyone else ever been tested by this lab? And, if so, do you think that the test results were accurate?
Also, I just figured out why I have had such awful constipation problems since starting the Doxy...
While I was taking all of my mineral supplementsi, 2-3 hours apart from the Doxy; I had no idea that NACi contains Magnesium. In fact, I just looked at the ingredients for most major brands. They all contain it! Anyway, i was taking it at the same times I was taking the Doxy, so I guess they were binding together in my digestive tract.
And, worse still, the acidophillus that I had purchased from this doctor, that was supposed to be taken along with Doxy to prevent digestion problems, had magnesium in it, too! No wonder I was having such trouble. I let the doctor know with the hopes that no one else falls victim, either.
So, I went back to taking a very expensive brand of Pro-biotics that does not contain magnesium. And, taking the NAC separately. So, I have not had any problems, since.
Well, so much for my first blog, here...I am just so happy and relieved to finally have confirmation to officially start the Wheldon Protocol.
I just can't say thank you enough to Drs Wheldon and Stratton..to Sarah...to Jim...to everyone, here!
Minai
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Well, that's very good
Well, that's very good news, Minai.
Hopefully he will come to realise when he has thoroughly digested all the information you gave him, that flagyli might be brutal, but it does kill the stuff rather than just have it lingering, useless in your body. Perhaps he will see tinidazole as less brutal when the time comes.
Now, if your doctor told you to take your acidophilus along with the doxycycline, this could have been causing the constipation problems, unless it is sacromyces boulardi, because the doxycycline will just counteract the effects of it basically completely alter the bowel flora, leading to yeast overgrowth. The various supplementsi which use magnesium as a filler use very small quantities, so although it all adds up, I think the main problem is taking acidophilus together with doxycycline. At least two hours apart is much preferable. I have no problems as long as I eat something at the same time. Besides which, excess magnesium should have the opposite effect!.........Sarah
An Itinerary in Light and Shadow Berger.
Started the Wheldon regime in August 2003, due to very aggressive SPMSi. Moved to intermittent therapy after one year. In 2006 still take this, two weeks every two months. EDSSi was about 7, now less than 2
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That is really good news.
That is really good news. This rekindles my hope in humanity after reading about Ken H's trouble getting someone to treat him.
I think Sarah has already given you good advise on the probiotic thing. One thing that we really like (our whole family drinks it) is Kefir. It has 8 bacteria strains plus other good stuff. It always makes me feel really good---can't explain it further, just good.
Keep us posted, we count on it.
Lexy
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--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi
Thank you, Sarah!IÂ suspect
Thank you, Sarah!
I suspect that this doctor has not even read the protocol, yet. So, I took a printed copy, along with a copy of your David's PubMed article, when I went to pick up the prescription and have blood drawn. And, sure enough, he had written the script for 250MG/day for the Azithromycin, so I think that confirmed it. I didn't see him, but made sure his nurses and nurse practioner knew to give him the copies. And, to be sure and confirm to him that they saw me, for the first time, walking without my cane.
Am so glad to know that about the acidophilus. A quick search on sacromyces boulardi produced mention of it's use to prevent diarrhea. With my luck, it might make me even more constipated?! I wonder if this Probiotic I take now, is similar, though. And may be the reason it seems to be working. These are its ingredients:
Lactobacillus acidophilus: 3.0 Billion+
Bifidobacterioum bifidum 3.0 Billion+
Frutooligosaccharides(FOS) 60mg
Other: L-leucine, abscorbic acid, and reduced L-glutathione. In a inulin base derived from chicory root.
It must be refrigerated, and is shipped refrigerated. My next task is to find one that doesn't have to be, when I have to travel, soon.
And, I'm confused. Should I be taking both 100MG caps of Doxyi together, at the same time? That's how this doctor wrote the script, so that's what I've been doing. I thought that's what I should do to try to maintain levels in a 24 hour period. Yet, I notice that most people here, seem to be taking it all at once.
Today, I'll start the Azithromycin...hope I can handle it
Minai
Hi Lexy, and thanks!
Hi Lexy, and thanks!
Kefir...have heard of it, but never knew what it is. Good to know that you and your family can drink it with no problem, and that it's actually good
Will try my best to keep up with posting and reading...
Minai
Minai, if you keep these
This is the label of the acidophilus I am using at the moment. It says nothing about refrigeration, so I don't, but I don't keep it anywhere too hot though:
Viridian bilberry extract, organic alfalfa and organic spirulina blend
45mg
I think most probiotics suggest refrigeration because it preserves the potency, rather than making it completely useless if you don't, so just take a few more capsules than normal whist you are away.
As for doxycycline, its up to you whether you take them together or separately. I take them together, with breakfast and the roxithromycin, because I can then forget about them. Maintaining levels are probably more important for coping with short term use for acute infectionsi. The instructions on the leaflet are to take them separately, but David says it doesn't matter for our use, and he's the expert. Its a pity that roxithromycin is not licenced for the US because it is a delight to take, gets into the brain like nothing else and is super immunomodulatory. I think it was a main reason why I was able to change to intermittent therapy so soon.........Sarah
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Sarah,These late/wee hours,
Sarah,
These late/wee hours, for me, have got to stop if I am to complete any of my University classes. Let alone get any sleep. Yet, I'd much rather be studying/reading/learning on the forums! Just can't make myself, successfully ration my time, it seems
After looking at your probiotic ingredients, it certainly does seem as if I may be on track. Mine are manufactured in Reno, NV, where it is very hot! So, I see where refridgeration must be one of their priorities with quality assurance. Last Spring, my husband had even purchased a small refrigerator (with his own birthday gift certificate, no less!) that we can take in the car, and use in hotels, when travelling. Just so that I could keep all of my special supplementsi and foods refrigerated. But, that will not be an option when we fly to Chicago, next month. So, your advice on the Probiotics is well appreciated! Was worried, enough, about not being able to bring my bottle of Samento, on my person, too. But, with a note from my doctor, I should be able to clear security with it, thankfully!
Good to know about the Doxyi! And, as for the first Azithro dose..while I'm still obviously alive, it did make me fatiqued. Yet, I also felt a bit better. Like I did when I started Doxy...that it is something that my body really needs. And, now, reading your experience with the Roxithromycin, I really would prefer that, instead!
Many, many thanks, again! (I think I should make this part of my signature, here, too!)
Minai
Well, I don't suppose there
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Hey minai on the S
Hey minai on the S boulardii it will not cause any diarrhea o constipation, it is a beneficial yeast that cannot colonize your intestines but instead is present only when you take it and will nudge out any candida and it also makes it easy for the beneficial bacteria in your other probiotics to take hold. When you stop taking s boulardii, it goes away. It cannot take over in other words. It has a very nice benefit of knocking out c difficile which can be a posible outcome of antibiotics, as c diff is a resistant form of pathogenic bacteria that can colonize the intestines. We do nto want that....
marie
On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.
"Color out side the lines!"
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
OMG! After struggling, all
OMG! After struggling, all day, trying to study, read, function with the Optic Neuritis, I woke up with; I finally figured it out! Of all days I could have missed taking my Lutein supplement, it was the day I started the Zithi!
I just took the Lutein, an hour ago, and my eye is already feeling well enough to stay open enough to read and to type. I swear by this supplement!
Sarah, I'm still wearing T-shirts, here, too. And, am still living in my Teva Olowahu flip-flops, the only ones that do not make my feet roast, and the only ones that actually stay on my feet since foot drop. Wore a sweater, yesterday, and roasted. Yes, I am still very much effected by temps. Too hot, or too cold, makes my feet spastic. The trip to Chicago should be interesting, what with the expected, chilly lake-effect temps. I plan to take my Stegmann "Wild and Wooly" boots, along for that.
Marie, thanks for more great info on S.Boulardi. I will order it, today! Now, if I can just get my doc to prescribe some doses of the OPV
I still just can't get over what a wonderful MSi/Polio analogy you composed. I still need to catch up on some of your other forum posting. The first one I ever read of yours, last Spring on, ThisISMS was one of the most encouraging ones, I had ever read, there. The topic was "Brain Lesions," if I recall correctly. Will have to look it up, again.
(A temporarily one-eyed) Minai