18 Months on CAP

Submitted by Louise on Thu, 2008-12-11 15:03

Dec 24, 2008 marks the completion of my 18th month of treatment.  I am antibody positive for CPn and Bb.  I started treatment on bacteriocidal level of Doxycycline 400 mg/day for almost 4 months before cutting back to 100 mg BID and adding Roxithromycin 150mg BID daily.  Those first 4 months were incapacitating and perhaps advantagious it is water under the bridge and I would not recommend it to others. 

Two weeks after the Roxi I added a one day Tini 500mg one pill pulse.  I was just the same.  Two weeks after that on Thankgiving 2007 in the evening I started a full 5 day, 500mg BID pulse.  I believe it was somewhere around day 9 - 12 that I developed a fever of 102F. Quick onset and decline to about 98F in about 24 hours.  I went on to go to a wedding the following weekend and dance the afternoon away.  Just to say that this type of activity would have been impossible prior to pulsing and prior to treatment.  

Since a year ago Dec 08 I have made incremental progress. 

In Feb 07 I started to increase my Vit D3, it took a long time to come up to low normal range and I am now on a 3 month course of 10000 IU with a retest at end of Dec to see the results.  Also at this time I was evaluated for all liver viruses which were negative and blood work for liver related CA which was negative.  I chose to continue to hold onto my Gallbladder that shows no signs of infection just stones to large to pass.

In March 07 I added magniscent iodine with some improvement in energy level. In Sept 08 I changed to Iodoral, starting at 12.5 mg and now am at 25mg/day.

In May 07 my MD and I decided to add dermal bioidentical estrogen and progesterone.   I have been on Pregnonelone 100mg and DHEA 25mg since May 2007. I am menopausal.  In late Sept.  we decided to add dermal bioidentical testosterone in a small amount.  This has made a great difference in my physical endurance and I have finally been able to do some physical work that has been put off for 3 years do to my unrelenting fatigue state.

In July 08 I had a difficult pulse tried to slip by it with no Cholestyramine support and went down with a thud.  I realized that I may well benefit from the Methylation Simple approach as well.  I learned more and ordered supplies with the help of people here.

In early August 08   I started Sam-e and more B complex for extra measure and also added Pyruvate adjusted to my body weight once a day in the afternoon which is my crump time.  I worked the Sam-e up to 300 mg per day then backed it down to 100 mg per day, I take it in the morning first thing on empty stomach as I do with my Roxi.  This change along with the Testosterone has supported my energy amazingly.

So all sounds perfect with progression of treatment and improvement however I have mentioned before from time to time on this site my elevated liver enzymes.  I finally found some pre abx results in my massive workup.

I located an AST not the full complement of enzymes that are usually tested but I had missed it earlier amongst the massive amount of lab data.  I had thought there was not pre abx baseline of anysort related to liver enzyme levels.

So my pre Abx baseline AST was 61 with the normal range (10 -33 at that lab)

This may reflect a primary site in the liver perhaps.  So I was 2x the normal to start.  My understanding is that 3x the normal can be expected for people on abx and beyond that providers become let us say concerned.  I have skirted this issue and had 9 labs drawn between May 07 and Oct 08.

Norman, I was most interested in your plotting of your results. If you read this blog, Would you be willing and able to do same for me so that I can see my elevations in relation to my situation?  I will be in discussion this month with my MD and we need to talk plan once again.  I do have Borrelia so breaks in treatment may be more impactful because of this.   I know I am walking the tight rope here in treatment.

I took a 6 week reduction in Doxy dose to 100 mg per day and then tested and that did not impact the results and at the same time increased my Roxi to 300 mg twice a day with no unusual results.  I went back to Doxy 200 mg for several weeks and decided to drop the doxy and continue the Roxi at 300 mg/day.

I am wondering more about Roxi and the P450 stress.  Does it have the same pathway for detoxification as Doxy and Clarithromycin which is P450.  This is specific info and my US sources do not include specifics about Roxi.  I had planned to change to Clari until I realized that it would possibly put me well over the top of which I am currently in the 4 - 5 x normal range with my AST on Oct 23,08.

The wonder is that I feel so good and am being so productive with this situation.  Normal when I see you concerned at 2x the normal I know that I am not being overly concerned.  I am taking the Sylimarin at 1.2 gms per day as suggested and eat adaquate protein and am being faithful to my supplements. 

I am wondering about Rifampin and the P450 pathway can anyone shed some light regarding that and Roxi and the P450 pathway.

Currently I am on day 13 of a 21 to 30 day tini pulse.  I am undecided as I wonder about the advantage of stopping sooner or later in regards to the testing that I will have on Dec 31,08.  I am doing quite will with this second extended pulse.

If I had only CPn I would be considering intermittent now but the Bb had me wanting a longer course.

My provider works with me, he considers my want and needs and my being willing to take personal responsibility.  I am sorting out what it is that I would prefer to do before sitting with him, attempting to be pro-active once again Smile!

Louise

 

Louise,

You are also more lucid and retional than you used to be, I think - or maybe I am thinking of someone else.   No matter - we are all doing a good job here, and I am delighted that you are doing well.   Keep it up.  And what a pulse!!!

Rica

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

The plot that I did required a fair bit of work, since it's not a usual sort of plot. The control file for the plotting program (gnuplot) is 92 lines long, and its workings wouldn't be easy to explain. So I'm afraid it'd be hard for me to be of much help. But note that it wasn't me who did a lot of worrying about being 2x over the 'normal' range; it was my neurologist. Lyme doctors are under heavy scrutiny; he has to be quite careful. Even so, I don't think it was the absolute level that concerned him, as much as the fact that it was rising fast, and continuing to rise. He told me at one point that twice the upper limit is generally considered acceptable if the treatment is important.

If you need to lower your liver enzyme levels, the thing to do would probably be to slow down on the pulses.

Norman, I hope you catch this I am certainly tardy in responding.  I did slow down on pulses stretching them out sometimes several months and always for anticipated liver enzyme studies and it had not impact unfortunately.  My level rose and leveled before I added Roxi or Tini as I started Doxy in June and Roxi in November of 07.   But thanks for the suggestion.  Louise
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Louise- A thorough summary of your treatment to date, and really good to hear after your challening beginning. It helps me appreciate the mix of things beyond the standard CAP that some of us need to handle a complex array of dysfunctions. I may try the simple methylation protocol to see if I can boost up energy, anyone have the links in-site or to another site handy? I know you were getting SamE from the same place as pyruvate, the other supplements from...?

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim again sorry for the late response.  I get my sublingual SL Methycobalamin B12 with B6 and folic Acid in the tablet at the local health food store.  I used to use the metagenics brand SL B12 prior to CAP I don't recall it having either of the other two vits.  I take the extra B75 tht is give with the Sam-e to prevent homocystine levels rising or so they say with the directions that come with the sam-e.

There must be other options for online ordering that are cost effective and quality. I get mine at the local health food store which has an extensive line of various brands of supplements, it may be the best in our state, as I have shopped many of them from time to time in the past.  What I am using is called No Shot by Superior Source brand  b-12 Methylcobalamin 5000mcg/B6 2mg/Folic Acid 800mcg per tablet I take one to two of these daily.  The have a whole line of SL supplements and many variations of SlL B12s so be sure to read the label or the screen for the variations.  I also have a cyanocobalamin1000mcg and I take this intermittently, if I could get the third form I might add that in as well.    Yes injection would be best but until the MD suggests it, since this seems to be working for me just now I think I keep my requests for it on hold. 

Jim, you seem to be a master at finding good sources of much supplementation.  If you find anything that you feel is good and cost effective please share back with me.   Louise

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

Louise, wow, you & I are about the same.  I am in no way ready for super pulsing or adding anything that would cause more die off.  With all the supplements I take I am having a heck of a time with pulses. 

About the liver, when we discovered I had genetic hemochromatosis the specialist wasn't concerned about the liver levels until 5X.  I told her I had Hep A before & was on abx protocol but she didn't budge off that.  When my liver is in pain, my skin starts to yellow.  That is my guide as my iron storage is wonky.

I am going to do a 2-3D pulse, try 1250 mg flagyl day so that I can recover before Christmas.  Then after New Years day I am going to do the same as I will be travelling on the 20th & want to be "healthy".  I have had horrible gut issues for many pulses now which has forced my dosing back down to 750mg.  We shall see.

I am so glad you are getting out of the black hole of zero energy.  Perhaps, when you like, you could pass a few suggestions on to me by pm.

Blessings for a wonderful Christmas celebration

peace

r

 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Louise,

This is a great blog.  I have a couple of questions which I can't seem to find answered in your posts.  (sorry if I missed them) 

1.  How long have you been sick before starting CAP?

2.  When you say you have alot more energy now, how is this different from the waxing and waning of the normal CFIDS/ME/CFS phases for you?  

TIA Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

My sickness was progressive over time, not an acute onset that I can really determine as the onset.  In my late teens and early 20's my situation was such that I was exposed to many folks who's diagnoses are on the front page here.   I have been modifying my energy state since the mid-1070's with one approach or another, some with temporary success for varying lengths of time.   I tried desicated thyroid back then with little improvement and since I had regular migraines related to my menstrual cycle I had a sense that the desicated thyroid increased them so after 3 - 4 months I stopped it.  My lab value were within the accepted range of normal at that time.

I did not have phases of waxing an waning that I can remember it was that long ago perhaps I did but don't recall.   I was on the steady spiral down and getting way down there on the dysfunctional when I by chance on the Oprah Channel Radio heard Tietelbaum speak on the Dr Oz show.  I tried the D-Ribose and made an appointment for a work up.  No where else would I have been worked up for CPn which was drawn on the first visit.  The Bb was drawn on the second visit and that two came back positive after I had been on Doxy 400 for 3.5 weeks at the time of that draw.  Some LymeMDs describe this as a abx challenge to see if the immune system can begin to see the Bb once again.  For me it worked.  I fell strongly that the Bb came well after the CPn in my life.   Not long enough to have neuro involvement beyond brainfog a different type of affliction yet really limits quality of life.

This energy is more even and consistent with the abx and supplements figured in and I have been able to physically and mentally do much more on long overdue tasks than I could in the several years of rapid decline before the start CAP.  Louise

 

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