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IN: AIP, autoimmune paleo, chronic lyme disease, Treatment

The PK Protocol Revisited: Phenylbutyrate for Chronic Lyme

March 10, 2015

 
 
As many of you know, the medical treatment that I am currently doing to treat the effects of Chronic Lyme Disease is the PK Protocol.  This treatment as a whole is an IV, supplement, and dietary protocol.  In the past, I have talked about how this protocol is used to reverse the neurodegenerative aspects of many neurological diseases, by restoring the body at the cellular level.  However, it is not until now, that I have begun what is termed the second part of the treatment, of which I will be sharing with you a bit today.
 
Review 

 

The main aspects of my PK Protocol are still quite similar to that of the first part of the treatment, with intravenous phosphatidylcholine 4-5 times a week, glutathione and leucovorin injections, B12 shots, and various supplements base off of what my initial blood work indicates that I need.  After completing around 4 months of the PC IVs,  it was time for my doctor to re-check all of my blood markers, to see if my body has made any progress.   Most of these labs went to Dr. Patricia Kane‘s special Body Bio Lab, where they are able to intensively look at my blood, the state of my cells, and what then needs to be adjusted in both my IV, supplement, and dietary regimen.  Overall, the first 6 months of the protocol was supposed to get my cells out of the negative zone, supplying them with all that was needed to restore their actual membranes and subsequent counterparts.  After this has occurred, my body is ready for the second round of the treatment, which is supposed to be the major “game changer,” according to my doctor, and other patients that I have talked to who have gone through the treatment previously.  
 
What’s New 
 
There are a few changes in the second part of the the protocol, mainly Phenylbutryate, of which I take orally, as well as through IV, before the PC infusions.  The reason for the use of phenylbutyrate is to activate the beta oxidation process of very long chain fatty acids in the body, of which aids in the rebuilding of one’s cells.  Interestingly enough, phenylbutyrate is being studied for the treatment of Parkinson’s Disease, cancer, and microbial infections, due to its ability to strengthen the epithelial antimicrobial barriers, of which are extremely important in how our bodies react to the environment, and the bacteria that it holds.  Overall, butryate as a whole is a short chain fatty acid that not only helps promote a healthy gut, but also the detoxification of various toxins, and thus create a balanced immune system.  Changes in the nutrient part of the protocol were also customized based off of my blood work.  Much to our surprise, my body is still extremely high in omega-3’s, which is actually a bad thing in the case of trying to restore cells, or health in general.  My blood work also revealed that despite how strict I have been following the protocol for the past 6 months, there is something present in my body that is keeping my cells toxic.  Because of this, Dr. Patricia Kane is ordering more special blood work to be sent to a lab in England, where they can test for mercury toxicity and other potential toxins.  For the time being, I am continuing my PC and Phenylbutryate infusions, a ketogenic diet (of which I personalize with AIP), and a variety of new supplements.  These include the following from BodyBio and a few other brands: Balance oil, PC, evening primrose oil, inositol powder, the contents of Energizing Iron (liquid liver), Collagen Powder by Vital Proteins, Enada NADH, liposimilase enzyme, VSL3 probiotic, Free Aminos, a high potency B complex, 5MTHF, Vitamin K, drops of selenium, maganese, iodine, and a variety of other liquid and capsule items.  Ultimately, I am taking all of these things because my body needs them, so keep in mind, everyone’s supplement list on the protocol is therefore different.  My Dr. is also pushing for me to get more probiotic foods into my diet.  Because of this, I made Phoneix Helix sauerkraut in hopes that I will be able to tolerate it despite the FODMAP content of cabbage.  Due to the continuing toxicity in my body, I am also to avoid fish that may have even the slightest potential of mercury, even if their selenium count is high enough to counteract it.  This is simply because my body is so depleted that the chances of eating any food that may hinder my cells healing, cannot be taken.  

Healing is a Journey 
As for myself, I definitely feel as though eating Autoimmune-Keto approach, and taking all of the IV/oral supplements is supporting my body better than anything else I have ever done.  Despite still feeling extremely exhausted everyday, continually trying to heal my leaky gut, keep my histamine and mast cells at bay, I firmly believe in the PK Protocol, and am very hopefull for what this next round of treatment and testing will bring.  It is especially nice to have doctors willing to go the extra mile and figure out what has been keeping my body in this weakened state for so many years, despite all that my family and I have persistently done to fix me.  Those with a chronic illness will understand when I say that  healing is a waiting game.  Whether it be for a treatment to start helping, news from a doctor on a given test, or simply the bodies response in trying to heal, nothing happens overnight.  At this point in the game, I do not have much more to tell about the PK Protocol, except for that I am in the

middle of it, and will be sure to give more updates as time passes.  In the meantime, you can check out the latest podcast that I had the opportunity to share a little bit about Chronic Lyme Disease, at Lyme Ninja Radio.  I really liked the angle of Mackay’s questions, and am thankful for the time I got to discuss my illness, as that in and of itself can be very freeing and healing.  If you have any further questions regarding my treatment for Lyme, or anything else you may have on mind, feel free to shoot me an email and I will do my very best at answering.  

 





Isaiah 58:11 “The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail.”

Filed Under: AIP, autoimmune paleo, chronic lyme disease, Treatment Tagged With: dr. patricia kane, isaiah 58:11, ketogenic, phenylbutyrate, PK Protocol

Reader Interactions

Comments

  1. Beatriz says

    April 26, 2015 at 10:47 am

    Hi Gabrielle!
    Thank you very much for giving us this valuable information, there is no doubt that the PK Protocol is helping you to progress.
    Which are your butyrate capsules?
    With sodium / potassium or magnesium / calcium?
    Thanks!

    • beyondthebite4life says

      April 28, 2015 at 1:08 pm

      Hi Beatriz,
      The butyrate capsules that I take are by Body Bio and are called “Cal-Mag Butyrate” (i.e. calcium and magnesium). You can find them on Bodybio.com, hope this helps!

  2. June whitehead says

    September 9, 2015 at 7:20 pm

    Hi hoping u can help me my dr already gives phosphcedylchoiline in his office ,He uses doses of 25mgs so big doses and he says its hard to find any info in pk i cannot afford to go tru body bio im 5 yrs into lyme d ,he said ask u vvhat dosage of p choine,and phenylbunatrate,i understand its different for all but a aprox amount helps him and me because i have a friend vvho takes only 4mgs of p choiline so quite a difference from 25 mgs.I dont vvant to copy your dosage or anything as this stuff is serious and u cant just guess but a ball park amount helps to narrovv dovvn the serch.I have PEMT snps that affect my choline just as MTHFR affects folate.okay hope u can help me a little .love your blog been reading it for a long time ,

  3. Dawn Crawford says

    August 11, 2020 at 9:58 am

    Hi there, could you share what brand of phenylbutyrate you take? We use BodyBioPC but I didn’t see that they sell a phenylbutyrate? Thank you!

  4. Dawn Crawford says

    August 11, 2020 at 10:07 am

    nevermind I just saw the answer in your comments!

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