Canadian Lyme Disease Foundation Bulletin Board

[Jessica R]

Let me start by saying thank you to all on Can Lyme. I have learned dizzying amounts of Lyme related things!
As you see from all my whiny posts 2010-2011 was no fun for me. Since antibiotics/any kind of treatment were not available to me in BC, I turned to the Marshall Protocol. I know now all about treatment controversy as I'm a well read Lymie. But politics and ignorance still rule the land. Everyone must fight for their treatment. Or-pay for it!
The MP worked for me. Plain and simple. My quality of life has vastly improved. I almost feel normal again. I felt like I should put an update up for all to see. It's a frigging miracle! Ten years of suffering and I can see the light at the end of the tunnel. We all struggle through the decision making process of meds and supplements. I found the MP inexpensive and simple. Not many on this board talk about it so Im going for it. I doubted my decision for a while but here I am 19 months later living life again. Still have some bits to work on but no more fevers, fatigue, arthritis, inflammation, depression, and body pains. I sleep well and almost have my brain back.
Digestive still hanging on. But over all a massive improvement. By no means is any treatment easy but at least I got results. Just an encouraging word for anyone who is considering the MP. And much love to all of you out there in the Lyme piffle.

[canlymec]

It is extremely important for everyone who has had successes to inform all of us. Thank you!

[Paisley]

What an inspiring post, Jessica! Thank you for giving us hope.

[Denise]

I had no idea you were in Canada! I saw your youtube video! I'm glad you're doing well. Keep it up

[lou2]

Did you stay completely out of the sun and avoid vitamin D supplements, etc? There are some more controversial parts of this protocol that have made the rest of it get questioned also. I have gotten the impression that there might be some good in it, but some questionable parts were mixed in.

Not doubting your word and always happy to hear success stories. It is just that some people on this have ended up with bone problems because of the lack of vitamin D. In fact, there is a disease called rickets which results from D deficiency.

[Jessica R]

Hi Lou2. I'm not sure I can answer your concerns about Vit.D. There is a lot to learn! I think the MP is about many things, not just D. You can read so much science about what Lyme and it's co-infections do to our bodies. All I know is that the science made sense and I am living proof.
Within 4 months of taking Olmesartin and reducing my Vit,D my inflammation was greatly reduced. I began to herx for many months after that- building up- then lessening. I am at a point now where I feel in control again.
Whatever the "science" is. It worked. I have no interest in promoting anything to anyone- and have no affiliations with anything MP related. I am just a chick. I was very sick- and now i'm not. That's all. I could chat all day about the science I have learned on this journey. But we are all on our own paths to healing. All this is just my 2 cents. If it could help someone, so be it. I am often surprised at the rigidness of the 'camps' in Lyme world.
We are all looking for the magic cure. I'm not sure there is one. I have yet to see a treatment that is not controversial.
I read and I read. YOU will be your best doctor on this lyme trip!

****Rickets (osteomalacia) is a softening of the bones that leads to fractures and deformity. The majority of cases of rickets occur among children in developing countries who suffer from severe malnutrition. The disease is cited as a primary reason for consuming vitamin D regularly even though research has demonstrated that rickets is not caused by vitamin D deficiency but by hypophosphatemia.

****The latest molecular evidence does not support adding high levels of vitamin D to the food chain in the name of “preventing rickets.” The health of the public would be much better served by regulations ensuring that they obtain adequate calcium and phosphorous rather than vitamin D.

Good luck Lou2!
Denise i'm not sure what video you are referring to?

[lou2]

What you are talking about is a rare genetic condition, not the ordinary vitamin D deficiency. Not sure where your quote came from.

Here is a description of ordinary deficiency from the Merck Manual, which is a pretty reliable source of information:

http://www.merckmanuals.com/home/disorders_of_nutrition/vitamins/vitamin_d.html#v766707

But if MP worked for you, that is great. Were you only on olmesartan, or were low dose antibiotics involved?

[Jessica R]

Lou, I have never had the pulsed antibiotics. Wanted to but the herxing from the olmetec was sufficient. Occasional Flucolazole for yeast/fungal issues- macrobid for UTI. But that's it. The weekly input to my doc really helped keep my immuno pathology to a reasonable level. It was hard but I survived. I would have gone the antibiotic route had it been available to me. The dozens of docs ive seen in BC made any other treatment impossible. So maybe I got lucky with the MP. I'm sure it doesn't work for everyone. By the way the Merck manual you linked to was from 2007. Lots has been discovered about the secosteroid D since then. Just last year a fascinating study on pregnant women supplementing D were having complications. They discovered during pregnancy D levels go down so the body's immune
system doesn't attack the fetus. And of course docs had been prescribing large amounts. Scary how little we
know about our immune response. I know you can always find opposing studies for everything- part of the confusion in looking for answers isn't it?

[lou2]

I'm impressed that you didn't use antibiotics. Don't think it would work for me, but I am very glad you found something that succeeded for your case.

That was fascinating about the vitamin d and pregnancy. Guess there has to be some way for the immune system to avoid attacking the fetus as a foreign object. Have heard it said that women have a weaker immune system than men for this reason.

[Jessica R]

Lou2, I still can't believe the no ABX thing. I'm just as surprised as you! But who knows, maybe later. Still have some Bart stuff hanging on. And I think I'll be on omlesartin for a while.
I can't find the pregnant D study but this NY Times one is interesting...

http://www.nytimes.com/2012/01/17/health/research/risks-when-too-much-vitamin-d-is-too-much.html

[Hope]

Jessica, Congratulations on your frigging miraculous success and how far you've come in 19 months of being on the Marshall Protocol. Congratulations too, for being brave enough to speak out about this.

I would like to thank Jim for responding to your post by welcoming comments on Canlyme about ALL of our successes. The time has come, where open dialogue needs to be tolerated.

I too have experienced much success on the MP. For many years, I felt I was on death's doorstep with multiple infections, severe chronic symptoms and pain. I believe the MP has saved my life!

I also found the cost of the MP to be a fraction of what it cost me when I travelled for ILADS treatment in the U.S. I made the switch to the MP within the first year of high dose abx treatment and have no regrets about making the switch. I blew through $20,000 in no time with U.S. treatment. I just couldn't continue on for financial reasons and also what the abx did to my gut. I also had major yeast/candida issues from the abx. It was also extremely difficult (due to how sick I was) to make the trip to the U.S. every 8 weeks and so I was happy to find an alternative protocol that works. I researched the MP for a few months before I made a decision to go on it. I did not make the decision lightly. It's not a quick fix, but then no protocol for lyme treatment is.

I've barely been able to tolerate the smallest amount of abx on the MP. Once you get the immune system up and running, abx are not so important as we rely on our own immune system to do the work. I know many people who are getting good results without the use of abx on the MP, including one that is allergic to abx and can't take them at all. I pulse 50mg of minocycline once every 2 days, that's it as far as abx go for me at this time.

The MP is beginning to get worldwide recognition, as doctors from all around the world are taking an interest in the MP. The science is there and as more things get discovered, the protocol moves along with these changes.

I hope you continue to see more and more healing. The MP is a multi year protocol and so it does take time, but once the healing begins, wow! Wishing you all the best!!

[RitaA]

Jessica,

I too am very happy to hear that you are doing so well. There is obviously more than one path to healing from Lyme disease and other tick-borne illnesses, and I think that's becoming more apparent as time goes on.

With a healthy immune system, a person could theoretically not require antibiotics even for some bacterial infections, but few doctors and patients are willing to take that chance these days. Antibiotics can restore good health and even be lifesaving at times, but they can have their drawbacks. Whether to treat (or continue treating) Lyme disease with antibiotics is a very personal decision, I'm beginning to realize.

Without access to antibiotics or enough money to pay for all the costs associated with travelling outside of Canada for medical care, some folks obviously have no choice but to consider other options, and the MP is certainly one of them. It seems this approach was key to restoring your health, and I'm sure that's all that really matters to you, your family and your friends. It sounds like you still have some healing to do, and I wish you all the best during the remainder of your recovery.

My own healing -- although not yet complete -- does seem to be the result of the antibiotic treatment I received. Along with quite a few other people in Ontario, I was lucky enough to be diagnosed and treated by a Canadian ID specialist (before he stopped accepting Lyme disease patients). I'll never really know for sure if something else might have worked equally well. There will always be some unknowns in life, and the older I get, the less I'm sure about anything.

Thanks for sharing your wonderful news.

Rita

[Jessica R]

Thanks so much RitaA and Hope! It is nice to have some open dialogue and support. It seems we are all Guinea pigs in the land of Lyme. I wish for more research and human studies for all treatments. Putting the power back in the hands of the patient- and not the politics. ( IDSA, NIH,insurance and pharma, etc.)
What a mess a simple tick can make.

[Hope]

About Rickets (osteomalacia):
Rickets (osteomalacia) is a softening of the bones that leads to fractures and deformity. The majority of cases of rickets occur among children in developing countries who suffer from severe malnutrition. The disease is cited as a primary reason for consuming vitamin D regularly even though research has demonstrated that rickets is not caused by vitamin D deficiency but by hypophosphatemia.

The latest molecular evidence does not support adding high levels of vitamin D to the food chain in the name of “preventing rickets.” The health of the public would be much better served by regulations ensuring that they obtain adequate calcium and phosphorous rather than vitamin D.

[Jessica R]

Like most Lymies out there I spent a lot of $$$$ on homeo/naturo-paths. Treating blindly at great cost. I have to say giving the ability to prescribe ABX to them is scary stuff. All the extra concoctions that go with that kind of treatment can get expensive fast! Think less is more with all that supplementation. We know for a fact now that stuffing yourself with vitamins is redundant and dangerous. Considering how they are made and how little we know about dosage. So I have kept my treatment simple. So far so good! Thanks for the kind support.