CAP month 28 Update, Progressed to Intermittent Cycles

CAPi month 28 Update, Progressed to Intermittent Cycles After 20 months on WheldonCAP I went on intermittent.  My MD has chosen not to order trepeat labs for the CPni<i< and co-infectionsi<i< or viruses, of which I had all of these done before the starting any abxi<i< therapy.   

I intended to take a break of several months to allow my moderately elevated liver enzymes to come into the normal to mild range.   They came down to mild range in 2 months, yet he skipped me along the road of staying off abxi<i< for a total of 8 months trying to get more decline.   Finally I said point blankly that I did not want to get ill again and needed to restart CAP and he wrote the necessary prescriptions.

I am now taking a modified intermittent cycle CAP protocol.   I say modified as I have traded the Roxi that I found so easy on my GI tract  but not easily available easily here in the US as my macrolide, and have switched to the USA available daily dosed macrolide which includes Clarithromycin(Biaxin brand name).  I am taking the clarithromycin(Biaxin) with Doxyi<i< and Tinidazole which is the only nidazole that I have used. 

I am currently on day 10 of this intermittent cycle, I started with Doxy 200mg/day and Clari at the 250mg tablet level twice a day for 4 days.  Then on the 5th day added the tinidazole 500mg twice a day, so I am now on day 5 of the tini and day 10 of the cycle.  Yesterday, day 9 of this current intermittent cycle, I upped my Clari to the 500mg twice a day dosage and plan to continue the tini for at least 10 days total (perhaps more) to address both the cryptic CPn created,and the added time that it is felt that is needed for the tinidazole to address the Cystic form (protein encapsulated form) of Borellia (Lyme) that may have been created by the re-start of Doxy and Clari combo during the past 10 days.  

If all is going well I may take this intermittent cycle out for a longer range of time as it has been 8 months with no abx coverage (due to an abx vacation for elevated liver enzyme reasons) and I want to do a bit of catch up and clearing out.  

Once I stop the tini I will continue the Doxy and Clari for a time to catch whatever Borellia is releases again into the system in its active form.  I am a bit unclear as to how long that needs to be done.  Some would say 6 weeks.

   So far I have not had any porphyriai<i< symptoms which were so prevalent for me during early treatment.  However the change to the Clari 500mg twice a day may have some impact on that side effect of treatment. I have my cholestyramine on hand should I need to clear porphyrins and/or endotoxinsi<i< but this has not appeared at this point in the cycle.  I believe that my methylation support may be helping me keep up with detox of the abx from my body. 

So far I have not had any die off reactions during this cycle and my switch to Clari 500mg BIDi which is the bacteriocidal dosage beyond the bacteriocidal dosage of 250mg BIDi.   I find amazing since I have been off abx for 8 months.  It may still be to early to tell. 

It is tempting to consider myself done however just feeling good can be very miss leading, as many in the past have shared.  I do not want to wait till I feel ill again to know that I should restart and then have to redue much of my current progress by being laid low and becoming disfunctional in my life again.   

I have been concerned that after 8 months off abx that this might happen for me and I would have to go through much of the same incapacitation but am now very pleased with the support of the intermittent CAP cycle thus far.   

I have considered taking rifampin but will not at this point and I will reserve it for the future as well any INHi<i<dosing, it is good to know there are other options to add.  I have been able to step up the dosage of my NAC to double that which I was able to take due to gastric distress from it.

I have averted my usual doxy stomach sensitivity and nausea by adding the doxy and clari together into a triple "000" sized empty capsule which can be had from internet sources as a NOW brand product or locally at a natural food store.  They fit perfectly both the 250mg and the 500mg plus the tablet form of Doxy.       This has made a huge difference for my comfort and I have added the suggestion to the bookmarks forum.  I certainly wish this had occured to me earlier, I was aware that folks used it to avoid tasting flagyli but.....    I have also started using the "000" empty capsules to make taking the NACi< more comfortable for my stomach and have been able to increase my dosage as well.

I am are much, much, much improved and back to a normal balance, schedule and activities and moving forward in my life and professional goals.  

Louise

5/07  Dx CFSi-FMSi 20+yrs. thru FibroandFatigue Center, see FibroandFatigue.com

6-07  Started Wheldon CAP/Lab Positive for CPn, Positive Borellia B. Started NAC.

7-07  Added recommended supplementsi from Wheldon CAP list.

11-07  Second Tinidazole pulse, 500mg twice a day for 5 days. 

11-07  Discovered and began using limited use Cholestyramine HS PRN for 7days per cycle to remove porphyrins+lipophilic endotoxini.

12-07  Turned the corner in treatment at the 6th month mark and began being able to increase activities with improving energy.

1-08  Increased Vitamin D3 to 6000IU/day per MD,  insufficient level by blood test

3-08  Started Magnascent Iodine liquid supplement and increased to 20 gtts/day         then on 7/08 changed to Iodoral 12.5mg/day and progressed to 25 mg/day I personally hand no bromine load symptoms noted.

5-08  Started work-up for Bio-identical Hormonal Replacement Therapy.  Progress by 10-08 to topical Progesterone, Estrogen and Testosterone based on lab studies.

8-08  Sam-e 200mg/day started with extra B Vitaminsi to to prevent elevating homosistene levels.  Worked up over time to 400mg to 600mg/day as needed.

10-08  Increased D3 to 10000IU/day from 6000IU/day based on lab values remaining low at 6000IU/day. 

2-17-09  Started LDNi for CFS marked improvment in state of wellbeing as well as baseline energy and deeper sleep were noted over time.

2-4-09  Feeling well enough to started Intermittent CAP Cycles Doxi 100 mg twice a day ,Clarithromycin 250mg twice a day as replacement for(Roxi), Tinidazole 500mg twice a day.

10-26-09  On Intermittent Cycle CAP  as explained above in this blog entry.

Comments

I am trying to get my doctor

I am trying to get my doctor to order the test for cp and co infection, what test in specific i should ask for.  as she does not know that.  she has ordered chlaymedia as part of urinalysis but i dont assume that is the right test.  please let me know.  thanks.

Awesome Louise - so happy

Awesome Louise - so happy for you! Love the time line of events - its very helpful to all!

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Hi Louise - this is great! 

Hi Louise - this is great!  I'm so happy you've been able to find such a level of wellness again.  It keeps me hoping, too!  You've obviously been very persistent and have worked very hard to find the right combination to help you.  I know you've done most of the digging yourself. 

I hope you're well on your way to being cured and helping others to find their way (which you're already doing)!

Thanks for the very encouraging post!

Finch

ME/CFSi since 1991. Cpni diagnosed 6/07. CAPi started 7/07. NACi 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyli to Tindamax 500mg 2x per day for 5-day pulse.

Excellent news, Louise.  

Excellent news, Louise.   Glad you're doing so well...

Keep these excellent updates coming! 

Treatment for Rosaceai<

  • CAPi:  01/06-07/07
  • High-Dose Vit D3, NACi:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

So pleased for you Louise

So pleased for you Louise and thank you for the careful detailling of your progress; the ups and downs along the way have been useful for so many of us.

Carol

speedbird

Great news Louise! Glad you

Great news Louise! Glad you are feeling so much better and can carry on with life!

Best Wishes, Maria

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid">i.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. CAPi for over 3 years. Back to work and life