Submitted by Louise on Wed, 2009-03-18 10:33

Treatment Overview on March 11, 2009;Diagnostic Evaluation May 24, 2007. Chronic Fatigue Sydrome - Progressive onset - 20 to 30 years to overwhelming fatigue, Fibromyalgia, Mild Form.  C.Pn. positive by Lab test result > 1:512,  Bb positive by Lab test Western Blot after doxycycline taken for 3 -4 weeks for CPn, Borrelia Burgdorferi (Lyme Disease) was revealed as positve on Western Blot late July 2007.Started CAProtocol 6-21-07 with Doxycycline, N-A-C and all supplements,  CAP Progressed on 10-31-07 Macrolide-added, progressed 11-22-07 Tinidazole-added and also Cholestyramine HS PRN x 7d starting day 3 - 4 of pulse and continuing for +/- 7 days. Adjunct treatments are as follows;  Bio-identical Hormone Replacement Therapy-BHRT, Menopause lab confirmed.   Started May-07 with FibroandFatigue Clinic Workup that diagnosed Chlamydia Pneumoniae -     BHRT started per lab evaluations by MD, OralDHEA 25mg with Pregnenolone 100mg P.O.  5-08 Dermal Topical preparations added per MD and lab evaluations - Progesterone at H.S. (timing to aid sleep per MD) Estradiol BIDand final adjustments with Testosterone in a.m. added 10-08 to improve daytime strength /Vitamin D3 Therapy - Started May 2007 at 3,000IU progressed dosage incrementally following periodic lab testings to current D3-10,000IU in Oct 08;  follow up lab value Jan 09 was 68, continuing at 10,000IU presently as of Mar. 11, 2009Iodine Supplementation begun March 2008 - Magnascent Iodine added worked up to 20 gtts/day,  the progressed to Iodoral July 2008 - 12.5mg and advanced Aug 2008 to current dose of Iodoral 25mgMethylation Supplements Begun Aug. 15, 2008 - Simple without specific testing - oral suppplements only (no Vit B12 injections at this time) supplements are as follows; Sam-e 200mg in a.m. with added Vitamin B supplement as reccomended to prevent elevations of homocystine levels, also Sublingual (SL) combination B-12 5,000 mcg, with B6 SL and folic Acid SL.Sleep issues adjucts - returned to combination supplement Feb 4,2009 supplement currently in use - Rest and Restore prescribed by clinic work up May 2007 (available for online ordering).  Feb 4, 2009-Klonopin for sleep disturbances discontined after 22 months of nightly use with no sequelae or difficulties from cessationPorphyrin Treatments - Personally, I believe that these elevated porphyrin related symptoms were a large part of my CFS presentation prior to the start of CAP and it was increased exponentially with the addition of CAP therapy for Chlamydia Pnemoniae which was revealed by blood test.  I found that I could not meet the demands of my challenges with Doxycycline and tolerate the large quantities of Charcoal suggested as a porphyrin mopper.  After 5 months, of strong porphyrin related challenges, I discovered some posted discussions of this topic and as a result of these readings, I added

Cholestyramine with my second pulse of Tinidazole which consisted of a full 5 days, 500mg Tinidazole, twice a day.  I started several days into the pulse and although my immunei system flaired with a 102 F fever on day 9 of the pulse, I was energized and had remarkable clarity and improved affect that I had not experience for perhaps several years.   I have continued to take choleystyramine with pulses except on one pulse July 2008 and I suffered the consequences which were remarkable return to lethargy, extreme fatigue and massive slowness of thought processing, massive brain fog.   I finally added the Cholestyramine at bedtime and it took several days of suffering to begin to clear.  For me porphyrin levels are a major component in my distress levels.    ChitosanHD available from , August 2008, I discovered this more absorbent improved version while ordering other supplements and added it.   I use ChitosanHD on an as needed basis when I get the sense that porphyrins may be building in my system.   It seems to be of help, is easier and less expensive than cholestyramine and comes in capsules.   I sometimes take it in the mid-afternoon away from supplements and medications and I use it in the middle of the night at times like folks here use Charcoal capsules at the bedside.

Intermittent CAP started at 20 months of Wheldon CAP on Feb. 4, 2009. March 11, 2009 continuing to be supported by progress gained on Wheldon CAP and adjunct supplements and treatments in remarkable return to function in activities of daily living. Now on intermittent CAP I will be using Doxycycline 100mg BID ,the macrolide Clarithromycin 500mg BID, And Tinidazole 500mg BID (tinidazole is a replacement for metronidazolei(flagyl) as my CAPmedications. I am going on Intermittent first because it was initially and the thinking leading to this decision was somewhat motivated of course by the advice that I have been given by my MD take some healing time away from CAP- just as a number of long term CAPers have been advised to do as noted in past posts on this website. What has led to my decision to trial Intermittent CAP however is that I have had substantial improvement. Since I have been advised to take this break, I am going to follow the advice from the Wheldon Protocol outline and take this opportunity to experience the intermittent phase of CAP, which will ultimately give me the ability to continue the intermittent phase as long as necessary. Of course returning to daily CAP is, thank goodness, always an option for me. I have so much more energy now with the results of the combination of 20 months on daily CAP and the adjuncts that I have worked onto over the past several years, that for me, intermittent now seems like the best choice for me at this time. And I will continue all the recommended daily supplements, and also continue to take ChitosanHD once a day for preventative maintainance and Cholestyramine with the Tinidazole day and post tinidazole days of the intermittent CAP cycle. I could continue the intermittent CAP for as long a necessary, giving my system time to rebuild in between the times of Intermittent CAP. And at some time I may need daily CAP again time will tell. There is flexibility within the structure of the Wheldon protocol from my interpertation of it. LDN-Low Dose Naltrexone-4.5mg added Feb. 17, 2009 / Added two week after start of intermittent CAP.  Gentle stabilizing shift noted, even energy experienced especially during the afternoon and evening at times when my energy has tended to be challenged.  Improved alertness at these times of the day.  Coping with life's little frustrations and discords smoother.  Subtle benefits but worthwhile.   Hoping for some of the other benefits but this subjective improvement is well worth this addition, in my personal opinion at this time.   It was good to learn that the use of this simple addition is being extended to other areas of dis-ease beyond MS.  Yet another adjunct that I have adopted as a result of consistent and in depth reading of the materials found in my readings here at CPnhelp.

  • Chronic Fatigue Syndrome/Mild Fibromyalgia/ME - Progressive Onset of Disease, past 20+ years
  • 5-24-07- CPn positive  by lab test.
  • 7-12-07 - Bb positive (Lyme Disease)  by lab test.
  • 6-21-07 - Started On CAP - Doxi, Macrolide, Tinidazole added in sequence.
  • 11-22-07 - Cholestyramine HS PRN x 7d. for porphyria symptoms with relief.
  • 5-08 to 10-08 Started Bio-Identical Hormonal Replacement Therapy. BHRT per MD testing menopausal hormonal levels adjustments made over this time frame. 
  • 10-08 High Dose Vitamin D3 -10,000IU target goal lab results of 100 tested 1-09 at 68.   Started higher dosed Vit D3  on 5-24-07 with Increased Vit D3  to 3,000IU, on  1-08 D3 > to 6,000IU for 3 month and then decreased 4,000IU. Level increased to Vit-D3 10-08 10,000IU. 
  • 8-08 Increase Iodoral 25mg. 3-08 Magnascent Iodine started. 7/08 changed to Iodoral12.5mg.
  • 8-08 ChitosanHD PRN (as needed when required) porphyria management of symptoms.
  • 2-4-09 CAP progressed to Intermittent CAP - after 20months Wheldon CAP.  
  • 2-17-09 Started LDN 4.5mg.

 CFS/ME CPn pos Bb pos/OnCAP6-21-07Doxi,a Macrolide,Tini/11-22-07Cholestyramine HS PRNx7d/ BHRT/D3-10,000IU / Iodoral 25mg/ LDN 4.5mg /2-4-09 Intermittent CAP p 20months Wheldon CAP/ xxxxxxxxxx xxxxxxxxxx xxxxxxxxxx xxxxxxxxxx xxxxxxxxxx xxxxxxxxxx xxxx<

CAP & Adjunct Treatment update March 11, 2009, posted March 18, 2009, revised for clarity of presentation of information.  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

Impressive.... as "clarity of presentation of information"!

Thanks, Louise! Image removed.

< SPMS - EDSS 7 > < NAC 600mg X 2, Doxy 100 mg X 2, Azith 250 mg MWF, Flagyl pulses, green tea, curcumin, flavonoids + all the supplements listed on Wheldon's Protocol (and possibly more) >

Clear as a bell, Louise. Thanks for the care you took to outline each element of your illness and treatment, and what you have found along the way. Really helps to illustrate the kind of personal "mix" that puts together a whole treatment process in such a complex illness.