Update 8-12-09, now Two Years, 2 Months since start of Stratton-Wheldon CAP Treatment for CFS/FMS.

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<.   

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<i< 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 Doxyi 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 CFSi 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<i< 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.

Louise

Comments

Thanks Speedbird and

Thanks Speedbird and Michele,  I had my scheduled appointment yesterday.  I had my list in hand to keep us on track.   I marvel how situations can shift visit to visit, we are all human and in a different space moment to moment sometimes even.

I came away with a handful of lab work.  He was not interested in a CPni titer even though I have been off abxi for 6 mos.  the thought being that it is expensive and would not change our treatment.   He was not interested in another CD-57 at this point.  My rise from 33 to 89 indicated we were going in the right direction.   He did share that the normal accepted by LLMD's now is I think in the 150 to 300 even though the reference range on the lab report had me in the lower end acceptable.  He said that although I had almost trippled my lab value, since I had such a low value to start I need to get back on a combination protocol.  That insight was refreshing.

I brought a few show and tell items.  One of the recent Vit D articles that Red had provided vitamin Di as Defensin.  He had not seen it.  I brought the wikipedia jpg. picture of the life cycle of CPn.  Similar to what I provided early in seeing him however it is such an instant overview of why treatment is long term that he seemed to get the review. 

Another thing I brought was the print out from the Vandy website for Chuck's contact info.   I encouraged him to call and speak with him and he just may.  He did say that if I had not come to him he would still likely not have know to look for it in patients and he is finding it.   He seems not so clear on how long treatment should go on and he realizes this.  So refreshing, knowledgeable without ego.  I told him that my understanding was that Dr. C.W.S is open to consulting with C.Pn. treating physicians (and seems to very much enjoy it from what I have read).    It may take a time for the follow through my provider part as he is getting married and I saw him on the last day before his time off just by chance!

I am having a B-12 level drawn, I showed deficient on the Nutreval analysis (through Genova Labs) that he wanted me to take last spring and I may be able to justify injectable form which could add more energy to my state of being so I am game. 

We are started to look further at the asymptomatic causes of elevation of liver enzymes and I am going to have the genetic testing for the Celiac Genesi.  He mentioned the possibility of the test last June.  I hedged as I thought why I avoid much wheat and gliaden (gluten) for the past 20+ year sometime more religiously than other but mimimal for the most part.  Still during the past 3 - 5 years more and more exceptions to the diet.   I watched the UCLA video lecture on the internet and was convinced that I could potentially find the reason for these level that just don't go down low as would be desired after 6 months off the meds.

I asked for a gastroenterologist in his area that he would recommend and got a name should I choose to see one regarding my situation.  I had a work-up 14 years ago and at that time I did not have the biopsy just GI series and blood work which were negative but the physician that I  consulted was convinced that I was in remission as I was religious about adherence to the gluten free diet at that point in time.  He has likely retired or more likely pass on from this lifetime as he was a good age back then. 

We talked about cholecystectomy, it is refreshing that he is against the surgery unless there is no other option.  I have know about my pendulous GB and intitially the gravel and now stones since the early 1980's and have escaped the knife several times.  But I am considering it once again, nausea is my foe, drains my quality of life at times.  And any surgeon who does the op could be convinced as recently as Feb. 2008 for that matter when I had myself worked up at a prominent liver transplant center hospital.  I have not had any sign of infection there, he says I am past the 40's which is the period that it is most likely to be necessary.  We could not have the full discussion as time ran out.  I want to hear all the cons before I seek consult again for a current Ultrasound exploration of entire GB and ducts and another look see at the few cysts in my liver that also could be contributing to the enzymes.   Up until this point I have really wanted to keep it now I am in the reexamination mode.  If it were infected if there was a blockage if there were cancer then of course there would be a firm reason to have it removed.   Nausea with a few specific stimulating substances.  He says it may not even relieve the complaint and I do know he is right, but sometimes it does.    I just want to explore if it could be related to the elevations in some why.  I want to start CAP again because I want to stay feeling as well as I do now.

I am haveing my Vit D repeated yet again and another Comprehensive Metabolic Panel.  I have my next appointment in three weeks and the intention is to have all the results to review with the goal to get back to CAP.  My intention is to begin with intermittent since I still have not relapsed and it will give my liver intermittent breaks from the three abxi.

What I find most freeing and has relieved the feeling of lack of personal power is I do know about self treatment and can now even follow enzymes if I should every choose to go there.   This makes all the difference in my mind and prevents any degree of feeling powerlessness to get care for myself that could happen if I felt fully dependent on my provider.  Sad but true, I believe that I am not alone in this one.  I fully realized the difficulty that some folks here have advocating and getting the treatment that they need for chronic persistent bacterial infectionsi.  

I truely enjoyed my visit with my provider he is a great listener, knowledgeable about intergrative medicine, neutraceuticals and allopathy and borrelia it seems and learning more about C.Pn.   I got through my entire agenda list just as he explained that we had run out of time and the next patient had arrived.

So another three weeks to wait to be seen again.  I will have my results before the visit as I always sign a release to have them sent also directly to me.   Gives me time to consider them and makes the discussion time more effective from my perspective, I can ask better questions and come with a thought through position about the course of my collaboration in my return the health.

If you have made it through this lengthy post, thank you.  Louise 

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Louise, many of us have

Louise, many of us have faced the dilema of self treatment.   But as you have clearly demonstrated we often know more about our condition than some doctor's do.   In time most of us find some kind of solution to our moral dilema and I hope that you feel at peace with your forthcoming decisions.   What I ask myself repeatedly is what is most important to me, my health or what my doctor thinks of me....

I'm pleased to hear that you are coping so well with life these days.   Long may it continue.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Timaca, Ultimately we are

Timaca, Ultimately we are all responsible for our own actions and I for one have no interest currently in update testing C.Pn. titers nor am I interested in just waiting for relapse to occur.

Thanks for your willingness to edit your comment.  The retreat was wonderful.  Louise

 

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Hi Louise~I deleted my

Hi Louise~

I deleted my comments as you requested.  Sorry that they caused you to feel upset.  That was not my intention.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

Lucidity and cognitive

Lucidity and cognitive improvement are the most enjoyable aspect CAPi in my case.  I did know how poorly my mental processes were functioning so I did not have the benefit of denial to soften it for me.  I often chose not to speak it was becoming so blatently obvious that I was constantly mis-speaking, even colors would come out totally the wrong one that I was trying to express.  Thanks for sharing that feedback.

I am fortunate to have been been given the testing and diagnosis of C.Pn. and then googling the existence of this website which gave me the tools to see that I got the proper treatment combination of abxi and along with all the other information that I have gleened from being a most avid reader here, particularly in my early days of treatment when I could literally do nothing more than sit infront of the computer screen and read the solid information located through this web community.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Thanks Speedbird for the

Thanks Speedbird for the feedback.  I have discussed intermittent with him. Feb, April, May and June 2009.  I did schedule an appointment and was able to get one next Tuesday morning for 1/2 hour sitting time. 

And yes I will use some of the quiet reflective time to wait for an approach to unfold for me regarding the appointment.   I need requesitions for labs, including a B12 level which showed deficient with my nutritional analysis (Nutreval by Genova labs) that he had me take last spring.  I want injectable which would assure absorption and and be paid by my insurance and he wants to test me on my oral sublingual 5,000mcg dosage.   Still the sublingual at that dosage is almost $40 for a bottle of 60 two months or less supply.  Another conflict to take the test again after abstinence like the prep for the Nutreval or to see what I am on my sublingual.  I will talk about the cost factor involved, he likes to avoid Rx at times it seems.

I will have a day after the retreat to gather my labs for side to side comparison and discussion and write up my current list of neutraceuticals and meds that he has Rx for me beyond the now on hold Abxi.   I will gather once again the hard copies of the CAPi rational to hand over again and discuss again and talk about the life cycle of CPni (not to mention Bb) and prevention of relapse and rationale for intermittent for both etc.  The if I get another lets look at labs I will get them done and have results also sent to me directly from the hospital and schedule a follow up with him in early Sept. if necessary.  

I also want to get names of MDs in his area for Celiac work up (perhaps have him order the genetic testing as I am beginning to have bowel consequences of indiscretions with gluten containing foods and the other labs were equivical at best and at the time I was on abxi so the bowel symptoms could well be prevented because of the control of the bowel flora.)

And I want to get the name of a Hepatologist there in his city too.  He is a recent grad of the local Residency program so I know he knows who he would choose for himself if he needed one!    That is how I generally ask for a referral to another MD from any sort of practitioner.    They cannot actually tell you who not to see but can tell you who they might see.

So I may be another month off before I get all the labs back and see him again and then if it still is watch and wait, like I told him in June, I don't have a long time before I need to get back to intermittent.   I actually have been in discussion about this already.   And I need to start using my already filled Rxs before they truely go out of date!

It is a good time to do more expensive tests as my insurance deductible has been me for the year and I am heading toward the next level of reduction of cost for services.

Of course the interesting thing is that I have not relapsed at this point and do not want to take the change of building my bacterial loadi again. Could I really be done?   I may ask for a Quest CPn panel, have not had one since being diagnosed and prior to any abx treatments and a Lab Corp. CD-57 the last one in April 2009, 4 months ago was in low reference range wondering if it is trending one way or the other or holding same?   Good to do these before another abx passes my lips perhaps. 

It is hard to believe that I have been off all abx since Feb.4,2009 a full 6 months.  I am greatful to be doing so well!  Yet I am mindful of the tenacity of these chronic persistent bacteria and I am not totally assured that complete cessation is the best choice of action given the combination of my bacterial contaminations.

Thanks for sparking some more personal introspection on the situation, it has been very helpful to me Speedbird.    Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

I continue to be amazed at

I continue to be amazed at your return to coherence Louise...so very different from when we both started here. Your dillema is perfectly understandable, I too would not like to appear to be disrespectful to my GP if I was in the same position because he is a caring and knowledgeable doctor. However if I felt that I needed to continue with intermittent treatment I would discuss it with him first, maybe using the example of Katman whose spectacular progress was halted and who had to return to abxi.

It's your life and you are much clearer in thought now so if you wanted to resume I would realise that you had thought this through carefully and accept your decision. Anyway, enjoy your retreat and maybe the way will be clearer afterwards.

speedbird

Louise,  Thank you for your

Louise,

  Thank you for your update with your treatment. I am amazed on how much we learn on our own to improve our health.

  You enjoy your spiritual retreat and your new health.

              Blessings.....Bonnie

 

Keep us postedSmile

started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplementsi,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram.