[nspiker]

Hi Trudi,

This doctor is a founding member of the IDSA, which is unbelievable! I haven’t read the book, but he gives credibility to lyme, in an environment that will not recognize lyme as a chronic disease.

It gives us hope to see someone with his credentials and background validate lyme, in a community that does not recognize the long-term effects 😉 .

nancy

[nspiker]

Hi Patty,

Welcome to the Roadback! Sounds like you have already researched, and decided to start AP, which is great.

As stated in the historical protocol, 100 mg. MWF is recommended. It’s always better to start slowly and ramp up, because of the herxheimer reaction. You could start out at 50 mg MWF,for the first week or two, and then ramp up to 100 mg., if you are tolerating the dose.

Also, be sure to take good quality probiotics, a few hours away from the Minocin, and drink lots of lemon water for detoxing.
nancy

[nspiker]

Hi kali,

I don’t take Neprinol myself, but do take a number of other systemic enzymes. It’s benefits are great for thinning the blood, dissolving fibrosis, reducing inflammation, and improving circulation. Hopefully Maz can tell you how much she takes, and what is recommended. I do remember Kim saying that she takes more than the dose that is recommended on the bottle, but I haven’t heard of anyone taking 15 capsules a day.

I would start out slowly, and gauge your response. Maybe start with two capsules a day on an empty stomach, first thing in the morning. I take mine along with minocycline, as it also potentiates the antibiotics. Systemic enzymes are also good for reducing biofilm, so there are many beneficial uses, but another reason to go slowly.

Just be sure to take it on anempty stomach, or it becomes a digestive enzyme.
nancy

[nspiker]

Hi Suzy,

This article was also posted on lymenet, and found it very interesting, but like you, was left with only questions. There seems to be a differing opinions in the lyme community of what is the best way to disperse biofilm. Dr. F. of the lab in Az., is a big proponent of low arginine, plant-based, no fat diet. If I’m understanding this research correctly, then starving the organisms creates antibiotic resistance. I don’t know if this means we should feed the organism, and if so, with what?

Anyone with any thoughts, please chime in….
nancy

[nspiker]

Hi alcock,

Welcome to the Roadback, and sorry you are having to seek us out 🙁 ! We are only patients here, like you, so I can not make any recommendations, as it is your choice. Ultimately, it’s important to educate yourself and make the decision that’s right for you. Have you read The New Arthritis Breakthrough or Scleroderma, The Proven Therapy That Can Save Your Life, by Henry Scammell?

We have members who have successfully followed AP, and have improved greatly, and many are in remission. Have you read some of the testimonials on this site? I was just reading the feedback on Amazon from people who have bought Scleroderma, The Therapy That Can Save Your Life, and there are many testimonials to the success of Antibiotic Protocol.

I’m surprised that you are on so little medication. The fact that you are not taking immune-suppressing drugs, will certainly give you a head start, should you choose AP.

nancy

[nspiker]

Welcome Kate,

Wow, it sounds like you are already on top of things, and have a good plan going forward 😎 .

I don’t have SD, but would encourage you to pursue IV Clindamycin, if it’s feasible. It still gives you that metallic taste that you’ve experienced, but is great for boosting treatment, and avoids the stomach problems. If you can tolerate oral Clindy, then you may be able to accomplish the same thing without IV’s.

If you lived in a wooded area for 17 years, then lyme may be a possible contributor. Many SD patients test positive for lyme. I was never bitten by a tick, and yet somehow ended up with lyme. It’s something to consider as you move along in treatment.

Many of us need to have positive mycoplasma results, to justify IV Clindamycin for insurance purposes. It may not be necessary in Canada.

I’m interested in hearing more about your plant sterol diet. I know it’s something I need to do.

Glad to have you join us….
nancy

[nspiker]

Hi Kali,

As Maz mentioned, I have used Interfase Plus. It’s a great product, and some lyme doctors recommend it because it is not only a systemic enzyme, but it contains EDTA, which chelates metals. I use it to help the antibiotics penetrate biofilm.

If you are just beginning treatment, you may want to consider other systemic enzymes that are more benign. Neprinol is great, and I’ve used both Thorne bromelain and Allergy Research lumbrokinase (boulouke) successfully.

nancy

[nspiker]

Hi Gay,

So sorry about your MIL. Sounds like you’ve been dealing with a lot lately.

I’m glad you updated us on your treatment, and what worked for you. So much of this can be trial and error; finding what works for each of us. There are many different pathogens that kick-start our immune system on over-drive. It’s incumbent on all of us to use our intuition, as you did with the flagyl, to find what works for us.

nancy

[nspiker]

Hi Maz,
Your story is inspirational, and your words will definitely touch others who are just beginning their journey. I can hear the gratefulness in your voice, and how thankful you are, for how far you’ve come 😎 .

It won’t be long until that remission comes…
nancy

[nspiker]

Hi cavalier,

Sorry, you are having so many challenges in getting treatment. I have had weekly clindamycin IV’s for a long time, and the way that it works for me, is that a home infusion company comes out to the house. They start a peripheral IV , and it is left in my arm for the entire week and I administer the IV’s to myself. At first I was a little nervous, but have since gotten used to it.

Have you found a doctor who will prescribe the IV clindamycin?
nancy

[nspiker]

Hi Krys,

I have a letter passed on from my lyme doc about this situation. It’s deplorable, and laws like those in a few states that protect these doctor’s rights, need to be passed. I’ve supported Dr. J. (Ct) in the past and will do whatever to help this doctor too.

My prayers go out to him as well…
nancy

[nspiker]

Hi umarwadia,

It’s scary to have your liver enzymes elevated 😕 . It may be the result of either minocycline or celebrex, as both have this as a possible side-effect. I know you’ve been on minocycline for two years, and how long for celebrex?

Are you taking anything to protect the liver like milk thistle? It has fabulous protective effects and can help get your liver enzymes back in balance.

You can always try switching to doxy, and see if that is effective in reducing your AST/ALT.
nancy

[nspiker]

Hi Ben,

I read your post the other day, and copied it and sent it to my mother-in-law. She was diagnosed about the same time as you with SD, but the doctors have scared her away from AP, saying that antibiotics can hurt her more than immune suppressing drugs.

Yours is a truly inspirational story. I know you will touch many with your words….

I pray they ask to find out more about AP and that I would have the privilege of sharing roadback.org with them. Unfortunately, I tried to offer it to several people now with RA or lupus that I happened to know and they aren’t interested. All I know is I was sick and now I’m not. The doctors can’t explain why! My respiratory specialist said he has only ever known two people to have improved from SD – me and my friend who put me onto AP. He said everyone else just has a gradual decline, sometimes fast and sometimes stable for a while before worsening in stages…but always a decline, never an improvement. I think he is watching me with interest.

nancy

[nspiker]

Hi Kali,

A Meyer’s cocktail is an IV administered combination of vitamins and minerals. Here’s a link http://en.wikipedia.org/wiki/Myers%27_cocktail. As far as the lemon olive oil drink goes, you can take it daily. Also, just lemon and water works well to detoxify and chlorella is great for binding the toxins.

I’ve been doing Clindamycin IV’s for two years, and feel that they are great in kick-starting recovery. They also bypass the gut, so you shouldn’t be bothered by any of the gut side-effects. For me, the IV’s are covered by insurance. As long as your doctor codes your diagnosis as infection based, or mycoplasma, there should be no problem (unless you have Medicare). If you don’t have insurance coverage, and If your doctor is wiling to prescribe and administer the IV’s, you can probably find a supplier for the clindamycin. The shelf life for clindamycin IV, after it is mixed, is about a month – at least that is the case with mine.

nancy

[nspiker]

Trudi,

Oh WOW, I just saw Ruth’s comments. We should all join her, and add our own experiences. What a great idea, and opportunity to get the word out about AP!

nancy

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