Sunday, September 5, 2010

Antibiotic protocol

OK, I wrote this back in June, and I have no idea why I didn't post it here.

I think part of the reason was because I wanted to sprinkle this post with links. Obviously I never got around to that, so I'm going to just dump this out there and hopefully at some other point, I'll be able to post properly.

So...

In June I went to the rheumatologist. At that point, my joints were swelled up more than was usual, and I had MORE affected joints at the moment than I have before. There are a few reasons for this: 1) a poorly tolerated probiotic 2) possibly one of their supplements and 3) unblanched almond flour. Apparently I CANNOT eat unblanched almond flour. It made me incredibly sick.

But according to my labs, I was better than ever before. All my disease markers were down.

AND... there was something new.

Some of you know I'm on long term antibiotic therapy. This is something the Arthritis Center in Riverside specializes in.

Their theory is that a large percentage of people with rheumatoid arthritis are actually infected with a microorganism -- called mycoplasma.

Organisms in the genus mycoplasma are very small -- so small, in fact, they are virtually undetectable. They're single celled bacteria with no cell wall. They behave much like viruses and are capable of hiding in tissues -- tissues like your joints. Your body can't really detect them very well, seeing as they don't look like normal bacteria.

But even though traditional rheumatologists think people with RA have randomly malfunctioning immune systems, the doctors at this center believe that your immune system is reacting to something (mycoplasma infection). Thus, your immune system is NOT just going haywire in a random fashion.

Now, testing someone for mycoplasma infection doesn't work all that well. The tests are VERY expensive and difficult to do. So what the Arthritis Center does is put people on long term antibiotic therapy, and then they wait and see what will happen.

Eventually, if you are infected with a strain of mycoplasma (there are several), the antibiotics will be steadily killing them over time. And when they die, they can't hide any more, and they get flushed out of your joints and wherever else they are, and make it into the mainstream functions of your body as they are eliminated. They also will cause a temporary increase in inflammation, because they release toxins as they die.

Once you kill off a certain number of them (billions), your body finally 'sees' all the dead guys and goes, "Hey! Those are not supposed to be there!" and starts to produce antibodies.

Now, as I said, the doctors cannot detect mycoplasmas easily. But they can check for those antibodies.

And for the first time -- after more than a year! -- they found antibodies to a specific strain of mycoplasmas -- mycoplasma pneumoniae, to be exact.

What does this mean? It means I have a confirmed mycoplasma infection.

It also means that their therapy is working.

!

Pretty cool, huh?

When your doc starts talking about remission, that's pretty cool. :)

Anyway, he wrote me a prescription for a stronger anti-inflammatory and pain medication and sent me on my way.

Yay!

PART TWO

After thinking about this, I started to formulate a bit more about my theory with autoimmune diseases and infections such as mycoplasma. I think that everything starts with disordered digestion, which affects the immune system over time -- the standard leaky gut explanation. Due to disordered digestion, the immune system then becomes disordered.

This allows infections such as mycoplasma to take hold more easily.

OK, now, stay with me here.

Your child inherits the bacteria of the mother's digestive system. So if the mother has disordered digestion, that will be passed on to the child.

Mothers of autistic children have a higher incidence of autoimmune disorders than the general population.

Autistic children have a higher rate of gut dysfunction than their neurotypical peers.

So, is it a stretch to say that autistic children might also be suffering from a mycoplasma infection in addition to their disordered digestive and immune systems?

I don't think it is.

So I did more research.

Can mycoplasma be passed from mother to child? Yes.

Can mycoplasma cross the blood brain barrier? Yes.

Can doxycycline and minocycline, the drugs used to treat mycoplasma infection, cross the blood brain barrier? Yes.

So could some cases of autism be caused by the effects of mycoplasma infection of the brain?

And could they be treated similarly to the way I'm being treated right now?

...

This gives a whole new meaning to the "feeding bad bacteria" portion of straying from the Specific Carbohydrate Diet. Starving bad bacteria through the digestive system has a systemic effect. It stands to reason that it starves out the parasitic mycoplasma bacteria strains as well as imbalanced digestive bacteria.

I don't know all the answers here, but I am compelled to discuss this with my rheumatologist at my next appointment.

I want guidance and I want answers, and I want people to not think I'm crazy. I sometimes dream that I am telling people about the dietary changes we've made and the great strides we've also made, and they ignore me and mock me.

Sigh.

So this is the post I've been meaning to make for months. Hopefully I can clean it up with appropriate references at some point. Thanks for listening.

13 comments:

Candice C said...

Gosh this was a great post. I have IBD and my son is recovered from autism. I say recovered because we did the dan programs valtrex, antibotic treatment and much much more. However I always thought that his autism and my diease which I was not dx with until after he was born was related to an underlaying infection. What antibodies can they test for? I'd be interested in seeing. Funny thing is that sulfazine which is an antibotic is the only medication I ever took for IBD that worked. That is until it started messing up my bone marrow. Now after 6 months on it and doing great in combo with SCD I'm back to square one flaring like no ones business because my body will no longer handle what the sulfazine is doing :(

Susan said...

Hi Candice!

It's interesting you would say that because sulfasalazine was the only medication that really worked for me too!

Have you tried the SCD diet with an elimination of cow dairy? That really helped me and it's often the first thing I suggest when people have trouble on the SCD.

Best to you and great news about your son!!

Susan

Candice C said...

I have but that was back in the first 6 months. I have been eating a lot of cheese so I may cut that out and see what helps.What medications did you recently try that helped?

Susan said...

Hi Candice,

I'm not on any medications at all right now, except for antibiotics and a pain medication. Sorry I can't help you on that end!

I hope eliminating the cheese helps you! I eat goat cheddar most of the time if I'm going to have cheese. I can have very small amounts of cow cheddar once in a while, but if I eat it every day, I have problems.

Mrs. Ed said...

I'm used to getting ignored and mocked, my inlaws work in the medical industry.

I think your theory is fascinating, please post any other findings. Do you ever read the blogspot "Roo's Clues"? She discusses alot of topics like this.

Matt said...

This was a fascinating post!
It got my mind going. I have UC and found your blog through my google updates.
I write the blog, Digestive Healing (http://www.digestivehealing.blogspot.com), and was wondering if you had more research that I could look at, or if you could give me more context. I'm thinking about bringing in some of your ideas for a post on autoimmunity and infection.
Check out my blog and let me know if you think you are willing to chat or provide info that would be helpful.

Anonymous said...

Hi Susan, Check this out. Some of the ideas you share in your post are discussed here:
http://mpkb.org/home/patients/pathogenesis_overview

I am on the Marshall Protocol + SCD and I am recovering from chronic fatigue.

Jen said...

Wow, interesting post. It makes me wonder about my RA. Even after all my research on diet.. I've never come across this info. It doesn't seem to be talked about.

Emily said...

Susan, My son has a mycoplasma dx and has been on long term abx. They have been helping. I think you are onto something!

Jeans said...

Hi Susan

I,m wondering if You have ever heard about Carol Sinclair and her book : The low starch IBS diet ?
i think it would be something for You, 'cause she's writing about tbe connection between RA and bacteria in the gut... and how to eliminate this bacteria.
She uses a modified SCD diet, that is far more restrictive, and the key point is the difference between STARCH and carbohydrates !
Please visit her site at : http://www.lowstarchdiet.net/blog/ or http://www.lowstarchdiet.net/ and dowload her book.
Also visit www.kickas.org and read about the diet.
Best regards
Jens Ole Jepsen

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Anonymous said...

Wow! At last thinking people...I was tested for micoplasma by my very excellent and broad minded doctor instead of being given Methotrexate for my diagnosed RA. Result was a massive infection. Went on the minocyclin low dose anti-biotic protocol and after18 months got my life back. have been medication free for nearly five years now, but can I convince people to give it a go? I am told all kinds of silly things such as I never had RA in the first place etc. Can't believe so many intelligent people cant see that they have nothing to lose by trying instead of killing themselves with Dmards and Nasaids. Have watched too many friends die from complications caused by their medications. Hope the word will get through, it's about time! Annie

Joseph Corbett MD said...

I have a son with Asperger's whose doing well. I think we"re missing Mycoplasma . In our family a "cold" can be aborted with Zithromax or Doxycycline for two weeks. This works even on day one with sneezing and rhinorrhea. The virus may be unimportant. Mycoplasma is a poor antigen and may cause autism ,cancer or auto-immune problems if ignored. Strep is bomb but Mycoplasma may be a "time-bomb" Joseph Corbett MD