Just now I am packing for a three day spiritual retreat weekend that starts tomorrow.
Yes, I am well enough to get ready and go. I owe my returned physical, mental and emotional improvements to my 20 months on the full Wheldon CAPi.
I am now at month 26, and I have yet to start Intermittent CAP as planned back on Feb. 4, 2009. I have been off all ABXi for 6 months due to residual liver enzyme elevations, after the first two months three has been more a less a plateau with some variability in the lab levels but essentially not much more dramatic decline.
I carried moderate range elevations for 16 - 18 months). Higher than anyone else on this site has reported. I am on the fence around taking matters into my own hands at this point and restarting intermittently to complete my treatment protocol verses continue to follow my providers advice and continue to wait and watch for liver regeneration to a fully negative baseline that was never established.
My AST is at exactly what it was with my first round of testing 62 which predates my of a high dosage level of Doxy 400mg/day per MD order , the other liver enzymes were not ordered to be tested at that time whatever the logic was for that I cannot say.
I have one of the unexplained causes of liver enzyme elevations, gluten enteropathy, liver enzyme elevations is one way that children are flagged for screening for this hereditary condition. My other consideration is that I may have had my largest focus of C.Pn. in my liver, as DW has shared that C.Pn. has an attraction to several of the types of liver cells. This seems likely to me due to the extreme CFS and lack of ability to have energy stores to draw from pre-treatment. I did an aerobic Nia class last weekend so my stamina is increasing exponentially all the time.
I have learned a lot about the patterns of liver enzyme elevations and I have been screened at a liver transplant center for my gall stones that are, for the most part asymtomatic, except for a few dramatic attacks, I manage with diet and these stones were first were an incidental documentation on Ultrasound and have been there for at least 30 years. The major screening included all apropriate liver related bloodwork and ruled out all the major liver viruses (hepatitis types) and the most current available blood cancer markers, all werel negative and this pointed to the elevations as, likely being due to the medications (Doxy, marolide, Tinidazole).
Of course they would be glad to remove the G.B. (he is a top liver transplant surgeon) and take liver biopsy at that time to be sure, but the liver US was benign for the most part except the existence of several cysts (small I have the DVD if the US) in several quadrants that I guess could cause disturbance in bile flow and lead to inflamation and cell leakage, just my conjecture. Oddly, my abxi provider, for some reason is opposed to cholecytectomy. I have no inflamation of note or signs of GB infection. He says to remove it creates other problems which I do realize is true and I have avoided the loss of my GB for 30 years! If I truely thought that removal of the GB now would contribute to the reversal of the enzymes level plateau I would consider it. These days, with many being done via laprascopic method, recover and post op pain is so much better than in the days than in the days I was doing post-surgical nursing!
(I started this as a response to a comment by Moxy1234 in someone else's blog and I will remove the post from that area as I have now successfully transfered it to my own blog area.) I am putting this out here Moxy (Moxi was invented in the Great State of Maine, I went to the museum last summer!) as you are a sleuth and a good one. My provider is guarded when I as about the enzyme situation, I understand this and the more I ask the less likely he will sanction my restart on the Abx with his blessing.
I think 5 months and no statistically significant decrease in the values, beyond the initial downward curve, says we have what we will get. He says it could take years to reverse them completely, I say I do not have years! He says we will watch it over the next few months, that is now.
I did a self test Comprehensive panel including the enzymes through LEF last month and it was essentially the same. People on statin drugs or frequent tylenol or other common meds in therapeutic amounts often are in the same postion with elevation, then one weighs the gains vs the risks. Problem as I see it, he now sees the risks of the liver enzyme issues compounded by my seemingly much improved state such that he is hedging on completing the protocol, he made a comment in passing last winter that the point was to get off of the abx.
I have the meds, enough for quite a time so access is not an issue to meds, and when the Clari I have on hand is gone (I have full sealed bottles) I will go back to Roxi, I have a huge supply of tini resting well sealed in the cool basement so I can do as I choose.
I can see this all from both sides and understand his hesitation and yet he does not live in my life. I have begun to believe that he is now thinking liability issues since I asked hypothetically about the cause of the pattern.
He entered into and continued to support my CAP the existing treatment when I started with him, when my levels were considerably higher (moderate elevation range). I regret the day that I suggested a brief break to bring down my levels, I never dreamed that he would be so difficult to get to go with and to support a restart of intermittent. There is no change of practioners to be made locally here and in most ways I am well satisfied and supported for all other aspects of hormonal and neutraceutical care and advice, personally I like him and do respect his judgement but we have a conflict now about his full understanding of Wheldon CAP and I a weary of being his educator. Now there is to much at stake for me personally.
Agatha, please forgive my intrusion of your blog, at this point I would cut and lift this from your page but this computer program used by this website willnot allow that, perhaps I will be able to lift it out after it goes into the archive. Then I can erase it and move it to a blog page of mine. (this has been done now.)
Mine is an unusual situation of course and I am now out here on the fringe having to make my own decisions once again and perhaps this time go the cap on my own volition-self-treatment. I am hugely glad that I do not need the provider to follow my enzymes now, yet I am torn about going underground with my treatment. Yet it is my life and if I start this I will not be frank abuot it down the road with the provider. Still I may need to go into that covert mode that so many folks have had to resort to to follow this treatment.
I find this a moral conflict, a challenge regarding truthful exchange and not following medical management advice. And the provider will not learn the complete CAP with me as a see and do patient this saddens me, for the benefit of C.Pn. postive patients that he discovers down the road. He is testing others and finding it of course.
I suppose I could schedule an appointment and show up with another signed statement about accepting responsibility for the results of my abx treatment. I did this back in 2007. I hedge this at this point as he could choose to dismiss me from his practice for non-compliance, it has happened to others, it does happen. And frankly he helps in many other ways and I am not angered by him. I can see both sides of the coin and I understand protecting oneself from potential malpractice. So what to do????
I may well be back to covert-self-treatment and lying by omission of sharing detailed information regarding my self-medications with my provider and about what I am really doing. Oh the tangled web.
I have been wanting to discuss my situation, a few folks have asked where I am with the restart of abx on intermittent and my enzyme situation and this morning I seem to have found the words.