Good news for those who must use TNF blockers

[Susan LymeRA]

I went riding today with 5 girlfriends and had such a wonderful time.  No pain today.

These are the days I live for.

Susan

[suera]

Linda,

I really appreciate what you said, I feel like  I bailed on ap but I waited 1 1/2 years…how much longer? How much more time should I miss with my kids? I am staying on the ap along with Enbrel with the hopes that with my inflammation finally down it will give ap a better chance to work, although some don't buy this theory.

Sue

[linda]

Sue,

So sorry to hear that you had to make that choice, but time with your children is priceless and irreplaceable, so I understand it. I don't know how the 2 drugs will affect each other, it does seem logical that they will cancel each other out. But someone wrote a while back, I think it was Joe M, that the biologics target one specific component of our immune response (in light of the article found by Susan, it looks like that may be 2 components). At any rate, the immunbe system is very complex and there are still other components that are not affected and will contimue to function. At least that's the way I understand it. Time will tell, altho the other conundrum is that we won't know which is working, the biologic or the abx, until you actually begin to wean off of the biologic and see what happens. Even that will take a while as these drugs stay in our system for a while. When I stopped taking Enbrel cold turkey it took 8 months for my PSA symptoms to return- by then I had been on the abx for 8 months but had to stop because of what I thought were stomach problems. So I couldn't tell you which one affected the PsA more than the other, only that when I stopped both I got sick again.

Also the wax and wain of these diseases makes it difficult to know whether the meds make us better or if we have just gone into natural remission. I know some don't believe in this but I have experienced it twice. By remission I mean no symptoms and no meds. The first time this happened it lasted 3 yrs, the second time it lasted 5 yrs. I think Dr. Brown talks about this a little in Scammell's book, something about the pathogens being walled off by our immune system until a trauma such as an injury or illness triggers a return of symptoms- maybe because the immune system is busy elsewhere. My memory is bad and my book is packed,  so I could just be pulling this out of the air, but it sounds familiar.

I hope you continue to improve, I would say with pretty good confidence that your current improvement is due to the Enbrel; the biologics work very quickly. I was also on Enbrel for a while. You might want to ask your doctor about the formation of antibodies that may eventually make the med less effective- but understand that the current solution to that problem is to add Mtx to the regimen. Add that and you'll REALLY feel better, but you add a whole new list of risk factors with that drug. Such difficult choices we have to make!:doh:

I'd say just continue what you're doing. I do believe the abx will still be effective in this situation and eventually you may not need the biologic, so the question of forming antibodies against it becomes mute. Best wishes,

linda

[Joe M]

Yes it was me Linda.  The biologics target one protein – TNF alpha.  Obviously the implications of blocking that one protein (out of millions involved in the immune response) has implications that are not fully understood.  From the information contained in the article it seems those changes are for the better.  B Cells have only recently been implicated in the etiology of these diseases.  There is still so much they don't understand about the immune system.  For example, I was poking around on the MP site last night, and one of the latest things there is that probiotics are actually bad to take if you are taking antibiotics for an autoimmune disease.  It can get very confusing. 

[Susan LymeRA]

Linda said:

I do believe the abx will still be effective in this situation and eventually you may not need the biologic

This is what my doctor believes.

Joe M said:

one of the latest things there is that probiotics are actually bad to take if you are taking antibiotics for an autoimmune disease.

Good grief!  Any truth to this?  My gut healed taking probiotics and I'm not going to stop unless someone gives me some really strong evidence.

Susan

[Joe M]

Susan,

I only read part of it last night, but the argument went something like this:

When you take a probiotic, you are introducing foreign bacteria to your gut.  The innate immune system then takes over and does what it does naturally, fight the invaders.  This immune response comes at the expense of the immune response that is fighting the l-form bacteria (mycoplasma) that is causing the RA symptoms. 

My opinion is they are just guessing, and if something is working for you why stop?

[Maz]

[user=20]Joe M[/user] wrote:

For example, I was poking around on the MP site last night, and one of the latest things there is that probiotics are actually bad to take if you are taking antibiotics for an autoimmune disease.  It can get very confusing. 

I think the trouble is that different antibiotic protocols have different requirements. The Marshall Protocol (MP) is quite different from AP and probably important just to mention this for newcomers who may be starting out, who may be reading conflicting material, and confused. What is recommended for one antibiotic protocol is not necessarily relevant or applicable to another antibiotic protocol and, by mixing protocol  ideologies, this could lead to serious difficulties down the road.

My understanding – and I am no expert on this –  is that MP advises against all supplements and even to “starve” the body of some nutrients and nutrient-rich foods…Vit D, for instance, which is a seco-steroid, thought to have immunosuppressive properties. The rationale for this being that the body will ultimately find its own balance, as pathogen load lessens, and that no one really knows what supplements may be enhancing the environment in which pathogens thrive.

While to some degree this rationale bears relevance to AP (i.e. some supplements may suppress the immune system when the purpose of AP is to retrain the immune system to function normally), the MP is a very different protocol. It's important to make this distinction here, I feel, because the Marshall Protocol is in its infancy, relatively speaking, and still in the early experimental stages. As with any scientific experiment, there are very rigid methodological guidelines to which those who choose MP must adhere in order to keep results consistant and reproducible. 

This is not in any way to intended to throw any rats in the vat – I don't know enough about MP to make any informed personal comments about it – and I'm sure John will be elaborate further for anyone interested, as to why probiotics are advised against on the MP, because he is actually on and studying that protocol. 

I think the point I just want to get across is that the Road Back BB's focus is Dr Brown's AP.  MP is a “neo” form of AP in that it also uses antibiotics, but it has evolved into its current form for very distinct and specific reasons. This is why it's not a good idea to mix protocol recommendations. 

While on Dr Brown's AP, anyone who doesn't take or stops probiotics is at risk of developing very serious gut issues due to a flora (plant) and fauna (animal) imbalance. Antibiotics kill off both the good and the bad fauna (gut bacteria), allowing the flora (candida) a chance to get the upper hand, which in turn creates leaky gut (tiny perforations in the gut wall due to fungal overgrowth), in turn causing poor food assimilation (diarrhea, constipation, irritable bowel, inflammation of gut lining, etc) and food sensitivities.

In fact, for anyone who is immune-compromised, probiotics are more than just a good idea….they're imperative to take. Just thought it may be important to mention this distinction for newcomers. 😉

Peace, Maz

 

[Joe M]

Sorry, didn't mean to stir the pot.  It was a bad example and you're right the MP and AP are two very different protocols. 

[Maz]

Joe…no worries. Didn't mean that to come across as combatitive or controlling in any way. Just get concerned sometimes that when different protocols are discussed that newcomers might need a little more clarification. Thanks for your sensitive reply.  🙂

Peace, Maz

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