Inspire Scleroderma – Sharing My Impressions

[PhilC]

@Maz wrote:

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?

Hi Maz,

An enteric coating isn’t essential, but it is a nice feature since it gives the bacteria a survival advantage that they wouldn’t normally have. Stomach acid destroys bacteria. It’s one of the body’s defenses against pathogenic bacteria, and a well-known fact. However, bacterial species differ in their susceptibility to stomach acid, and there are also differences between different strains within a species.

There is at least one company selling a probiotic that contains acid-resistant bacteria, and they advertise that fact. Most probiotic products I’ve looked at do not mention anything about whether the bacterial strains they contain are resistant to stomach acid. That being the case, I prefer to err on the safe side and assume that they are not.

I will elaborate on this answer later on when I have more time.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PetRescue]

I love reading discussions like this because I never know what probiotics to take. I recently learned about these from my compounding pharmacist whom I get my LDN from. I completely understand that of course those without enteric coating are going to say it’s not necessary, but it seems most do not have the coating.

http://www.florajen.com/faq.shtml

“Florajen

[Maz]

@hopefulmama wrote:

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.

Andrea, sorry, I’ve been away this weekend at my daughter’s swim meet in MA, so have been delayed in responding, but wanted to thank you for doing this research and finding these studies. I do a lot of research, but often don’t have time to look at peripheral subjects such as this, which does seem to confirm that not a great deal of probiotic is lost to gastric acid. Following further study links alongside these on PubMed, it seems the larger problem with regard to loss of probiotic value may be in the manufacturing processes certain companies use and the storage of probiotics between manufacture and consumption.

Thanks again…I don’t know why this subject has niggled my brain, but it has for a while. It just makes no sense that common gut microbiota found in healthy guts would need to have passed through the stomach in the first instance and so why the need for enteric coating? I think it just bothered me that it might be a clever marketing/sales ploy by probiotic manufacturers. Jen – thanks to you, too, because this info is what I’ve come across, too.

Of course, there may be other factors to consider here, such as healthy stomach pH being altered by chronic illness that might compromise probiotics being consumed in foods and supps. This would make more sense (e.g. in the case of someone who may have imbalanced stomach pH from taking PPIs or other acid reducers)…but from all I’ve read so far, enteric coatings may actually prevent the release of probiotics into the correct places in the gut due to delays is dissolving.

Perhaps, together, we’ll all unravel this mystery as research unfolds and is posted. Thanks again for your efforts – much appreciated!

[Maz]

@PhilC wrote:

An enteric coating isn’t essential, but it is a nice feature since it gives the bacteria a survival advantage that they wouldn’t normally have. Stomach acid destroys bacteria. It’s one of the body’s defenses against pathogenic bacteria, and a well-known fact. However, bacterial species differ in their susceptibility to stomach acid, and there are also differences between different strains within a species.

There is at least one company selling a probiotic that contains acid-resistant bacteria, and they advertise that fact. Most probiotic products I’ve looked at do not mention anything about whether the bacterial strains they contain are resistant to stomach acid. That being the case, I prefer to err on the safe side and assume that they are not.

I will elaborate on this answer later on when I have more time.

Phil

Hi Phil,

I can see why you’d want to err on the side of caution to ensure survival advantage of your daily probiotic to get full bang for your buck…I do, as well. I think what I’m really questioning is whether or not probiotic bacteria that are normally found in a healthy gut actually need assistance with an enteric coat…in other words, if they needed it in the first place, they wouldn’t be found in the human gut, as the purpose of stomach acid is to be a first-line defense in killing foreign bacteria. However, are probiotics “foreign,” per say, or recognized by the body as friendly natural microbiota, thus surviving stomach acid? The studies Andrea posted seem to suggest that this is so for various probioic strains. Perhaps more concerning is that enteric coats may actually be detrimental, as they cause the release of probiotic too late in the gut to effect any benefit.

I think what is true to say is that everyone seems to have their own favored probiotic brand that works for them. I started out using cheap chewables and they worked just fine. I then switched to PB8 veg caps and take 4 to 5 times the recommended daily dose. It’s been an inexpensive, effective way to keep candida at bay for me for nearly 4 years while I’ve been on heavy Lyme protocols and I have no complaints in that regard. That said, I can’t disregard the fact that some probiotics may benefit from enteric coating while others may not…so where does one find the balance in this? All we have now are either grandiose claims by probiotic manufacturers touting their goods or a few random scientific studies on specific probiotic strains. Perhaps the best way to gauge this is user experience?

If you find any independent research that speaks to the need for enteric coating, please let us all know, as I think it would be enlightening for us all. Thanks!

[PhilC]

@Maz wrote:

That said, I can’t disregard the fact that some probiotics may benefit from enteric coating while others may not…so where does one find the balance in this? All we have now are either grandiose claims by probiotic manufacturers touting their goods or a few random scientific studies on specific probiotic strains. Perhaps the best way to gauge this is user experience?

Hi Maz,

That fact has actually been in the back of my mind for some time now. We really have no way to know if any probiotic is as good as the manufacturer claims. And even if we are fairly certain that a particular product is a good one, that doesn’t preclude the possibility that we might occasionally get a bad batch. That being the case, I think it’s a good idea to diversify. I recently started taking two different probiotics every day, and three days a week (following an antibiotic pulse) I add in a third.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

@PhilC wrote:

That fact has actually been in the back of my mind for some time now. We really have no way to know if any probiotic is as good as the manufacturer claims. And even if we are fairly certain that a particular product is a good one, that doesn’t preclude the possibility that we might occasionally get a bad batch. That being the case, I think it’s a good idea to diversify. I recently started taking two different probiotics every day, and three days a week (following an antibiotic pulse) I add in a third.

Phil, thanks…just seconding all of the above! 😉 And, the idea of rotating or mixing probiotics is probably the best we have right now and the wisest way around all this.

[aynurrzepa]

I really love everybody here and no problem for hijacking my thread – I learnt a lot from the hijackers 😀
Now I do spend some time more on Inspire lately than here as I try to break some unjust “spirits” there against AP etc… I’m on a mission 😎
So b’cos I spent so much time there I “started” to kind of think like them… I was “getting ideas to get offended and insist you take your probiotic discussion somewhere else” 😉
Of course APers are more relaxed about everything as I think choosing AP gauges your personality too. If you do choose AP, means you are a differrent kind of person, the kind to inspire and be inspired.. Shall we change our name to Inspire then and give them name roadback to go back to the common sense? 🙂
Anyway, I feel here I really learn more and get inspired… there I feel I have to explain, defend, reach out for common sense (what a rare commodity nowadays!). I thought if I shoudl give up… Then I decided (after seeing support from the administrators of Inspire) that I will continue spreading the word of AP for the sake of those who are willing to try and there are quite a few there… Some of our members are with me there giving me support.
Oh, by the way I had all these thoughts about probiotics as well. I take Dr. Mercola’s ones, 66 billion strenght, blend of 10 bacteria, entheric coated (capsules). I used to take them apart from food based on some discussion which confused me that way, then I read they have to be taken with food, so that the acidity of stomach was somewhat reduced so not to kill the bacteria. I now wonder if I have to break the capsule and take the powder out? Continue taking it with food? I also occasionally use probiotics made by BioCare, 2 bacteria (acidophillus and bifidum) powdered form (needs refrigeration), strength 24 bln (if stored correctly), also available in capsuled form… Has anybody heard of this brand? It’s the strongest I could find in Dubai in pharmacies…
My LDN is with acidophillus filler, so that’s an extra protection…

What do you think about Mercola’s probiotics? He also makes powdered form to be taken as a flavoured drink, same strength (66 bln)…

[PhilC]

Hi Aynur,

Here is something to keep in mind. Whenever you post to a forum and get a hostile response, it does not mean that the entire forum is hostile. Usually, only a small number of people are responsible for the hostility. Many people visiting forums mostly just read and rarely, if ever, post any messages. So I am sure that your efforts are not wasted.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[richie]

Hi-Let us bear in mind that the Inspire site is sponsored by the Scleroderma Foundation who has absolutely refused to acknowledge the antibiotic approach to scleroderma –instead they are comfortable with other approaches which their medical advisory board is committed to -IMO to the detriment of many many of their followers –They still cling to “spontaneous remission ”

---

Any probiotic that wards off fungal infections is a good one —I relate my personal experience –200 mg of minocin daily for 11 years now and using PB8 has kept me free from any fungal problems –I think people run into problems when they only take the dose mentioned on the label –bear in mind the label instructions are for maintaining a healthy gut –we have to take into account that we take antibiotics which kill off the good bacteria in the gut –this must be replaced—-so I would think a larger dose is required –I.E over the years I have raised my dose of probiotic I now take 10 capsules daily of PB8 -all at once in the afternoon —its results that matter and once again zero fungal problems —
richie

[lneal]

Hi Aynurrzepa and All!

Don’t let them get you down! So many of us appreciate your posts on Inspire. I am on here all the time, but rarely post because I just don’t have the knowledge that all of you have. But if it hadn’t been for people like you, I never would have learned about road back in the first place! “Cubby” was one of the first to reply to me on Inspire and sent me here. So you see, all of you saved my son’s life! Don’t let a few bad apples spoil the whole bunch! Just helping one–like my son–is miraculous!

Do you notice how I post on Inspire? I am always careful to say—This is what is working for my son–this is what the mainstream doctors were prescribing him–high dose prednisone–this was his reaction–now he is still on a very low dose of methotrexate, and I state that and the fact that the zithromax has saved him and boosted his immune system. It was interesting… I mentioned the fact that I can’t wait for my son to be able to be of age for minocin and someone replied about minocin stunting her son’s growth. I thanked her for the info and will now look into it further. It won’t stop us from ap but so strange how these people are so anti ap. Gosh, they are a bitter group of people. 👿

I’ve never seen anything like it! I stated yesterday on Inspire how depressing that forum is because no one gets well 🙁 , but if you go to road back almost everyone gets well! 😀

Keep posting!!!! I learn so much and others do too! 😆

[aynurrzepa]

Richie, Phil – I relaise that. It’s so great to have you guys – it’s really important.

And it’s important we remain here, supporting and helping each other. Like I got life saving help from here and like Ineal did for her son…

You know, I am still to see results after starting AP but as I wrote here before, I know I owe my last 30 years of well being despite SD to tetracycline my mum chose to give me as a child when I was having strep infections and of course the correct treatment I received from rheumatic fever with penicillin – the treatment plan was carried out over 2 years and because my mum did it so religiosly correctly I now have no trace of ever having rheumatic fever 🙂 and my SD reduced tremendously… That is why I so strongly believe in the infectious cause of all rheumatic conditions (if not all unexlplained deceases in the world!) ans I believe AP will help me to get into remission.

Cheers,

Aynur

[lneal]

Hi Aynur,
This post above was from me–lneal–my real name is Lauren but on Inspire I go by LaurenAnne–as Lauren was taken!
As you can tell I not only agree with you but am behind you! Keep on posting!

As always I appreciate all of your knowledge and help and appreciate everyone on road back!

Aynur, I have a question–about the minocin for my little boy who has linear morphea on his scalp. I am that mom, LaurenAnne who advocates ap and road back on Inspire! I don’t know if you saw that someone posted in a reply back to me about her son’s experience with minocin. She said it stunted her teenage son’s growth by at least 4 inches. My son is 7 and LLMD and AP doctor do not want to prescribe mino until the age of 9. Currently because of potential brain involvement, my son is also under the care of pedi rheum at local children’s hospital. My son takes 0.4ml of methotrexate subcutaneous injection, daily folic acid , and 125 mg of zithromax M,W,F. I know the zith is keeping him well! Both LLMD and AP docs think he needs to stay on mtx for now too. Eventually we will taper him off. Luckily, it is a very low dose! Do you know anything about mino affecting growth?

[Lynne G.SD]

Hi Lauren;
I have not checked out mino causing stunting but I do know the disease and other drugs will do so.Here is a bit of info I have on hand.Maybe I should post these sites on Inspire.I really wish those people would wake up so I keep feeding them info.God only knows if they read anything other than their own posts as ten people can ask the same questions in a couple days and the replys are already on the first one.
http://www.wellsphere.com/detailedSearch.s?keyword=Juvenile+Sclerotic+And+Stunted+Growth
http://www.living-gluten-free.com/gluten-intolerance-disorders.html

Lynne C

[lneal]

Thanks for the links Lynne!

Yes, I know all too well about the other mainstream meds–I am so thankful for ap!

They only read what they want to read and then attack something they don’t know the first thing about! The only reason I go on there is to help other mothers!
Onward!

Lauren

[aynurrzepa]

Of course, Lauren – it’s you! 😀

Here’s what I found on the net:

http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.asp

(note: take all that info with pinch of salt as that organisation is not pro-AP/infecitous casue).

Also, I would advise you post this udder a separate post and then you will be able to get responses from our AP veterans /expertswho know more than anybody else about AP.

I also will post the link abpve again as I want to question something I read there separately…

[Author]

Posts