Thursday, August 19, 2010

Antibiotics


At the beginning of this year I was on anti biotics for 2 months. I had been suffering with an ongoing pancreatitis issue and further investigation found a gut bacterial overgrowth issue. This on top of my Celiacs could have been part of the reason that I crashed into full blown CFS. Anyway, while on antibiotics I experienced gradual but significant improvement of all my CFS symptoms as well as the gut bacteria problem. Since stopping the antibiotics I have slowly worsened and experienced new dramas with the onset of POTS and OI.

After talking to my Dr and doing my own research I figured that perhaps I did infact have other bacterial issues that were either causing or impacting upon the CFS. My Dad showed me some articles about the Marshal Protocol which was really interesting. This protocol suggests that for some people their CFS is bacterial based and it addresses how to deal with it. This protocol specifically looks at Mycoplasma type bacteria. I was quite convinced; however I tested negative for Mycoplasma so this particular protocol would hypothetically be of no use to me. My Dr did however email this link for the CPN protocol which is similar in theory but works on a different type of bacteria. I haven’t been tested for this type because there is only one lab in Australia which do the test and when I enquired some time ago they said they were currently not doing it but probably would be again in the future. So ….. it is a possibility. My Dr also said he has had several patients follow the CPN protocol and seen significant improvement. The downside is that most of the people using the protocol are people with MS not CFS and they seem to have lots of trouble with herx or detox etc. Apparently most CFS patients using it have less trouble.

My current plan is to go back on the same antibiotics which I used at the beginning of the year for a few weeks as an experiment and see what happens. I actually started them a week ago and already I have improved. The POTS and OI is just the same but all my other CFS symptoms have been better and I am thankful for that. If I continue to improve over the next 2 weeks then my Dr and I will consider looking more closely that these protocols and similar ones.

Has anyone had experience with these or with antibiotics in general??

12 comments:

  1. Lee,

    1. CPN tests used to be only one lab. But that was many years ago. It is now much easier. eg. 8 wks ago my daughter got a CPN test for something unrelated to cfs (positive). It was through one of the "normal" path providers. Ask around...

    2. MP is not just for mycoplasma. It is for anything that is happy to shed its cell wall and live inside your cells. Including cpn, rickettsia and others.

    3. If you research MP you will find many say it is the devil. It certainly didn't work for my son (cfs). But in my years of communicating with patients only two have *really* gotten better. Both on MP.
    If you decide it is for you, be aware that some will tell you "the holy writings say you must take vit D tablets. Therefore this MP should be burned at the stake". There is quite a bit of circular argumentation going on here. Most are not aware of the differences in various Vit D types. That's a long story. Regardless of how that argument turns out in future, there are both sepctacular failures, and successes with MP. You need to choose.

    If you want to pursue it get onto their website and get a referral to a doctor local to you.

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  2. Oh thanks for the info Peter, i will ask around :) Regarding mycoplasma and shedding cell wals etc, i was aware of that but couldn't get that info out of my head this morning due to brain fog, hahaha. I beieve that the story with Vitamin D is that you also have 1,25-D which is not the same as Vit D. You have have low Vit D levels but high 1,25-D levels. Does that sound right to you? I believe it's vital to understand this before starting one of these protocols.
    I am fortunate that my Dr knows an awful lot about CFS and also these protocols ...

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  3. Lee Lee,

    I will be watching your progress as I am interested in this theory. I also, agree that you should research well, and make sure that you supplement your body with whatever it may need as a result of long term antibiotics - but can I just say that any relief is RELIEF. I am so sorry that you are feeling better (you had me a bit worried there for awhile).

    ((Hugs))

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  4. LOL - Brain Fog - I meant to say that I am so HAPPY you are feeling better....geez

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  5. There is also combined Antibiotic Protocol (CAP).
    http://www.cpnhelp.org/treatment_protocols

    It didn't work for me. And there are risks involved. But I thought it wouldn't harm to check it out.

    Good luck.

    Rachel M

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  6. I just realised you've mentioned the protocol already as CPA. Please delete my comments.

    Rachel M

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  7. Wow this is great that something actualy works for you. I hope it continues to help you improve. Keep us updated.

    I've never tried any kindof antibiotic therepy so I'm interested.

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  8. someone in the support group who's doing the MP - could introduce you if you ever want to find out more...also, would be interested to know who your dr is.

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  9. Oh, my Dr is Gary Deed at the Mediwell Clinic in Brisbane. I would love to talk to someone who is doing the MP, if anyone can put me in touch that would be great :)

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  10. i swear deed is seeing at least 1/2 of the people in brisbane with CFIDS!

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  11. Hey Lee!

    Just wanted to say hi from Scandinavia. I´ve got pretty similar background, after severe stress and a virus- infection i got a totally crash in summer 2009 and I´m still bed bound. And I´ve got an autoimmunedisease which won´t help my way to recover. I know how u feel, my worst symptom is weakness and the brain fog. So the reason, I´m not able to see anyone. And like all cfs patients say, the worst thing is: my physicians don´t believe me just say it´s all in my head and my friends think I´m depressed. All the people just keep saying "you need to do something". But like you guys know, I just can´t!!! And I feel really defrustarated, because no one believes me!!!

    Btw, I love Oz so much, I used to live there a couple a years ago..

    We will survive!

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  12. Very interesting post. Here in the US, if antibiotics help someone with CFS, it's very likely they have Lyme disease, but I don't know how much of that is in Australia (I know there is some on every continent now). Another common culprit in CFS patients is chronic sinus infections.

    There's no question that CFS is related to various infections that worsen the immune system dysfunction, so if you've found something that helps you, that's great!

    Just be sure to take lots of high-quality probiotics if you're on antibiotics (at opposite times from the abx) to prevent making GI problems worse.

    Good luck and let us know how it goes!

    Sue

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