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 !