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Just wanted to vet, if I may, please…
I have been visiting and participating in some discussions on Inspire/Scleroderma… Oh my! I tried to tell people about AP and was amazed how brainwashed people are… so that even after reading literature on AP we all read, they state autoimmunity is the cause of SD and that the casue is unknown and all that kind of stuff we all know about… Some also say differrent treatments work for different people – “for some it’s immunesuppresants for others it’s AP but AP is questionable as there are no medical trials with proven results (the old stuff we are tired of hearing) and they ar enot ready to wait for results and AP even if it works takes to long”… So they opt for drugs with all those awful side effects for fast results hoping by some miracle they will avoid the side effects and that they are in long term remissions from those drugs…refusing to even stop to consider the infectious theory for one minute… Some have little to no results with the traditional med but will not give AP a try. Some insist on spontanous remissions! There are some who tried and failed with AP…There were few there ready to try AP, too… But the majority…so relentless trying to shut me up, prevent me from even mutterng words “AP could work for all, depending how correctly it’s applied and how important it is sometimes to through in some other abx in case Lyme controbutes of causes SD”… Plainly these people are totally blind to infectious theory and would admit AP works only for some and only because everybody is different and everybody needs differrent treatment…suggesting thre are distinct subsets of SD depending on what they were triggered by, seeing the trigger more like a casue than just a trigger… They agree some may have SD due to infectiosn not not all…I tired by best to help them see some reason in AP and just give it a try but there are 2-3 SD sufferrs there who vehemently try to shut me up or pour mud onto everythign I say… accusing me in pretending to be a doctor and harming more than helping with “my advice”…
They all work hard at supressing their immune systems instead of boosting it (along with AP). They do get results, some even get into remissions, but for how long? At what expense? They all believe if AP really worked for all it would be all over the press and doctors would prescribe it to everybody… So naive!
In short, I am soooo happy to have found THIS forum! Everybody is so differrent here, mature and well educated, able to see and think outside the box… A BIG THANK YOU AGAIN!
I know, AP is also not a 100 % cure and unf, doesn’t work for all… and some have to be on it for the rest of their lives…but we most probably know why AP doesn’t always work – the timeliness of starting AP, the state of health before starting AP and the damage other drugs already made… Other coinfections, like Lyme, strep, diets, toxins, health of mind etc…etc…
I will continue visiting the Inspire forum, trying to INSPIRE people to dare not to listen to their rheumis and articles/publications sponsored by pharma companies tooting to treat them with harmful drugs with varying and temporary success stop ignoring those about AP only becasue they are not “not supported by facts” published in PubMed! I will be blamed in irresponsible posting (already have been although I tried to be as carefull and diplomatic as possible at the same time speaking my mind) but I will try.
But I also believe it’s God’s way – if you are supposed to see the truth you will and will use it for your good. If not, you will not be able to hear, see, understand, accept even despite the common sense…lost in search for facts.. where faith and common sense alone can be sufficient… I don’t blame them – it a human nature…
Aynurr,
I relate so much to what you are saying. I do not go onto that website at all if I can help it anymore. I did try once to post a really encouraging note about the benefits of pursuing AP and the research behind it, but my post was quickly torn apart by many (although not all) of the people who responded to it. At the end of the day, I decided that it’s like the old saying, “You can lead a horse to water but you can’t make him drink”. I think that the best thing we can do is get busy healing, fine tuning our own protocols, sharing what works for us, and putting that information out there for seekers to find. Patients who really want to heal in this day of the internet can and will find the Road Back Foundation if they are open and looking. I know in my own case I found this foundation and had an amazing hour long telephone conversation with one of its most crucial volunteers within 24 hours of being told at the hospital that I might have scleroderma. I was on my road back immediately.
The real tragedy and challenge comes to educating and encouraging rheumatologists to look beyond symptoms and pharmaceuticals developed to mask symptoms. That is why I got so excited about the ACR conference articles that Suzanne was posting, because this is the kicker – getting the actual rheumies to believe in AP and to inform their new patients about it as a treatment option from the beginning. And I think the best way to get rheumies to believe in AP is to give them as much concrete proof as possible about the efficacy of the protocol.
One thing I have grown to truly appreciate about LLMDs is that you really don’t have to try to convince them about what kind of autoimmune responses a body can have to infectious triggers. They have seen it first hand, and they don’t fixate on the autoimmune disease itself. They fixate on the triggers and look at the whole human ecosystem – bacteria, protozoa, fungus, mold, heavy metals, hormonal imbalance, etc – and understand that each person will have their own road to healing based on their different soup of co-infections and immune system depressors.
Every single autoimmune problem I have been officially diagnosed with by an MD has been linked to an infectious trigger through copious research on PubMed, whether it be my Hashimoto’s (yersinia entericolitica) or my Raynaud’s (CMV). I have no idea why doctors that work closely with the immune system wouldn’t look first to see what your bacterial load was, and how to reduce that burden through antimicrobials, rather than giving you cover-up drugs.
Anyway that is a rant of my own! 😀 LOL
Thank you for the honesty of your post. All I can say is, I agree. And, I feel very sad for those folks on that board. I hope some of them manage to wander over here 🙂
Try not to be too discouraged, Anyur, you’re doing the right thing by reminding people that they have options in treating Scleroderma. People need to take ownership in their health and quit blindly accepting treatment without doing their homework and fully understanding the risks that come with all treatments. We’ve all been shot down on that site, but there really are people that have listened enough to want more information which is all we can hope for. Learn your options and YOU decide if it makes sense for you.
When I first got sick and still in shock at my diagnosis, I was on the internet constantly looking for answers. I joined several boards and did my own little survey to see what was working for people; so in a sense, that board really helped me decide which way to go. Clearly, the people using antibiotics were getting better, much better, than those that were using immune-suppressing drugs.
AP was the right choice for me. 😀
Take care…..kim
@kolby wrote:
I also want to add how amazing the search engine is. After visiting IGeneX.com and reading that mosquitoes are a Lyme suspect, I put mosquitoes in the search engine and got a lot of results. While I was playing around I came across a post of Maz
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinWhere to buy and proper dosage?
@PhilC wrote:
@kolby wrote:
I also want to add how amazing the search engine is. After visiting IGeneX.com and reading that mosquitoes are a Lyme suspect, I put mosquitoes in the search engine and got a lot of results. While I was playing around I came across a post of Maz
Hi Phil,
Thank you so much for the info. I take 21 supplements a day so a little savings sounded very appealing. My Father-in-law is a Biomedical Scientist and works for VRP which is where the majority of my vitamins come from. He
Hi Jen,
I take three different probiotic products, but I recently starting taking a new one that I like (so far). It’s Gr8-Dophilus from NOW FOODS. It seems like a good probiotic, and the price is quite reasonable. I just checked one web site and the price was a little under $10 for 60 capsules. I bought my last bottle during a sale and paid $7.74 for it.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein@PhilC wrote:
Also, unlike Jarro-Dophilus, the PB 8 capsules are not enteric coated. The packaging used for Jarro-Dophilus is also superior– the blister pack does a better job of protecting the individual capsules from moisture.
Hi Phil,
Would you be able to share any links you’ve discovered as to why the enteric coating on probiotics is necessary? To date, I haven’t found any convincing evidence that an enteric coating has any value for probiotics, because, in their natural state, the probiotics that we consume do not need this protection. It’s purely an assumption on my part, but if that was the case, then wouldn’t probiotic substitutes, like kefir and store-bought yogurts, chewables, probiotic straws for kids and liquid probiotics, be useless, as stomach acid would destroy any probiotic value in these, too?
Thanks, Phil.
Hi Phil;
If one is healthy one does not have to worry about probiotics being enteric coated .Stomack acid will kill between 90-95% but the remaining 5-10% is fine….if you are healthy.We,on the other hand, have damaged guts,at least a certain degree of yeast and of course poor nutrient absorbtion so you need probiotics that will fo straight to the small intestine where they are needed.It is always good to rotate different kinds of probiotics as they certainly are not all the same.
Lynne@Lynne G./SD wrote:
If one is healthy one does not have to worry about probiotics being enteric coated .Stomack acid will kill between 90-95% but the remaining 5-10% is fine….if you are healthy.We,on the other hand, have damaged guts,at least a certain degree of yeast and of course poor nutrient absorbtion so you need probiotics that will fo straight to the small intestine where they are needed.It is always good to rotate different kinds of probiotics as they certainly are not all the same.
Hi Lynne,
This makes all the sense in the world, but I haven’t seen any scientific studies on what percentage of probiotics actually gets lost to stomach acid and how this was determined. If you have, can you share this with us? I’d be very interested to read more about this. Probiotic brands will have an investment in the studies they churn out to say that their brand is best. What would be great is if there are any independent studies out there that have formulated an actual method of measuring what is lost without enteric coating.
What doesn’t make sense to me is that if 90-95% of the probiotic is susceptible to stomach acid, then surely all the probiotic would be susceptible, if not enteric-coated?
Question is…is enteric coating just another sales ploy by brand names doing a bit of one-up-man-ship?
If you or anyone can share more on this, I’d be grateful to hear. Thanks! 🙂
Hi Maz,
I did a little research to see if I could find studies that would answer your question. From what I have read so far, it seems like stomach acid does not stop certain probiotics – at least the lactobacillus plantarum and rhamnosus types – from making it through the digestive tract without the enteric coating.
http://www.ncbi.nlm.nih.gov/pubmed/15702859
http://www.ncbi.nlm.nih.gov/pubmed/9706795
http://www.ncbi.nlm.nih.gov/pubmed/20832693
However, I’m sure there is a lot more to be discovered about all of this – I’ll keep searching when it isn’t so late at night. Take care!
A
I think this probiotic discussion would be of interest to all, but it might be missed since it started under a different topic related to SD! I hope you will continue it on a new thread.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
Suzanne,
So funny that you posted this…I logged in to apologize to Aynurr for starting a new thread under her original. I had no intention of stirring the pot, but I love everyone
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