Louise's Blog - Page 2

Louise's Blog - Page 2

Comments

wow, I think if I recorded

wow, I think if I recorded my progress like this it would give me post tramatic stress syndrome. I dont want to remember, I want it to all just fade like it never happened. Im glad you made prgress though. I wish you the best.

 

 

 

 

 

&nbs

Thank, Rica, Daisy,

Thank, Rica, Daisy, Corinnam Jim, and Raven for your input.  Just added to the body of the work in progress and appropriately was able t use bold.   Kicking this up on the list yet again!
  • 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 - Just a cheer for

Louise - Just a cheer for you and your remarkable improvement!  CHEER !

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Jim, Thanks for the changes

Jim, Thanks for the changes that you made to my blog editing problems., lifting out the bolding of the type.  I changed the signature and omitted the bolding and see  now how it interfered and caused the event.

I do like the bold to highlight dates and will continue to add bits and pieces of the month to month history as it comes back to me, as more has already with a readthrough this morning.  As well as my every present mis-types that I am constantly correcting once I close out so this way of doing the blog does sit OK for me.

If you can do it, then changing the date to today may work to set it in time perspective. I prefer that my log remains editable as I still have details and clarifications that are coming back to me that I want to grasp and add.    My year here started during this week in 2007, thanks once again for taking on the vision of this web community, hosting it, and continuing to nurture it's growth over time.  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- The reason your

Louise- The reason your blog isn't on recent blogs is that the original page was evidently from Sat, 2007-11-03 08:44. according to the posting date. You have to post a new page to have the date changed, or it turns out that I can change it to current date if you want.

There is some kind of muck up in the signatures: if you end your signature with any formating like bold, italic or strike through, all text following, even others comments, will end up that way. I'll see if I can figure out what made yours bold and correct it for you.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim, Speedbird gave me some

Jim, Speedbird gave me some insight and I was able to sort some of it out except the bold came out from somewhere, maybe my sighnature when I cleared the page to repaste it as plain text.  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, what an incredible

Louise, what an incredible journey. I'm very happy you are joining the world of wellness.

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Louise- I really appreciate

Louise- I really appreciate the time and detail you put into this. There is a little feature of the text editor you may not know about, it's pretty new and I don't think anyone's tried it. You'll see a little icon with the Microsoft Word "W" and a clipboard that is for pasting text from Word. If you click it a window pops up that says Paste Word document or such. Then submit, and it helps in many cases to keep a lot of the Word formating intact.

I can edit in some of the changes you had trouble with if you let me know, or sent me the document directly and I'll paste it.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Thanks for the instructions

Thanks for the instructions on how to use the formatting tools on this website.  You really go above and beyond in your moderator functions here!   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, that is quite a

Louise, that is quite a journey! Very happy that you found the right things to help you. I really appreciate your description of the meds and supplementsi you take -- very informative for those coming in.

Best wishes on your journey to wellness,
Corinna

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Louise, at least it is

Louise, at least it is here. Your recovery from dark and fog is really remarkable. I plan to reread some of your earliest posts because I seem to remember that you were almost incoherent. I recognise the confusion only too well and am gratefull to have it behind me,also.

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

Seems that I may not be

Seems that I may not be able to correct my post above to make it any more readable.  Even I am beginning to loose interest in getting it right ,the bold seems uncorrectable to me at this point.

Hope that it makes some sense to some.  This is a rough outline of my progress, without all the emotional details and twists and turns which you are all so personally aware of in your own stories.   

Added comment - much of the post has now been corrected, the bolding is no longer a problem.  Much thanks to all who have helped me sort this small problem.

  • 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
  • <

This Page 2 Blog the second

This Page 2 Blog the second attempt at sorting out my story. 

I am writing for myself as a record primarily on ths page 2 blogpage. I am giving it another go at a time when I feel that I am improving, after 1 years, 2 months of the Wheldon CAPi (There is a more confusing fuzzy version on Louise's Blog - Initial Blogpage .   I am writing now to in a sense leave my early story of challenges behind me yet accessable to those who might choose to read it, for what ever their reason.

I am not a trained writer, yet I do enjoy the process of commiting words to print that attempt to communicate.  This self revelation arrived later in life for me and as with most specialties (much of life preocupations are specialized with vocabularies that I constantly use incorrectly, I know what I mean and want to convey yet I lack the words, either from lack of knowledge of terms or brainfog). 

So the content on this blog may be refined and augmented and expanded as I regain memory of details or I find errors of meaning or spelling etc.  It may pop up again on the forums as I craft it.  One story, not so much different from pehaps yours, just different details, different challenges, same in the aspect that you know it, that "Unexplained Decline" in the ability to have quality of life and function with satisfaction.

So with that disclaimer I am happy begin my very self focused presentation.  I have had a hard time getting myself to set up and do blogs here.  Any number of reasons could be shared but why bother, that would be tangent not worth exploring.

I'll start at the age of 15, I remember that I had joy de vie! Joy of life, back then it was easy to find, I felt well and had good physical energy. It is an answer to that question, when did you last feel well?  That question is sometimes asked on Physical Intake forms.  And when I look at it it stumps me, my internal answer ????.  The other aspect of 15 of note is that I began to learn the vocabulary of Biology which fascinated me, the only A mark that I earned in High School. 

This led me on to the vocabulary of medical terminology which I devowered during my post secondary educational process along with looking at the practical solutions to physical-emotional-mental difficulties of the populations that I served for years.  Yes I come from the helping professions perspective and bringing attention to myself is not so easy for me.

My younger days have served me well in my chronic decline. 

Even with the cognative impairement of chronic persistent intracellulari infectionsi that I had been experiencing pre-CAP this knowledge base remained as my long term memory. 

This educational part of my personal history has been a blessing for me, and when I found this website, in the midst of my early treatment die-off overwhelm and dysfunction, I was still able to see, read and understand the logic of the information that is available through this site. 

Information here has been selflessly shared by professionals without thought of personal gain, only of making the information accessable for future development, so that work would not be lost.  My eyes mist with gratitude and appreciation that this information has entered the public domain available to those that can sift through it and use it. 

And it is written in a specialty language, medical speak that I could digest and use for a basis of discretion in making choices for my medical care.  Leading edge information, no guarantees, yet possibilites and hope.

Louise's Story

Diagnosis: CFSi/ME, FMSi (Fibromyalgia as secondary diagnosis, currently asymptomatic except with die-off events)

1980 Trial of Desiccated Thyroid gr ½ Lab values then and now are normal, - failed improvement for fatigue complaints.

1981 Endocrinologist Workup for Hypoglycemia, 6 hr GTT, failed to meet criteria for Hypoglycemia, changed to complex carbohydrates only in conservative amounts

1985 Family information obtained – Maternal line female cousin documented, bx and blood test diagnosis Celiac Sprue. Personal Trial of diet improved symptoms.

2000 Started 40-30-30 Zone diet protocol (fits well with gluten abstinence) great improvement with energy and fibro symptoms with addition of Omega-3 pharmaceutical grade high dose fish oil.

2003 Life Event. One Known Nymph Stage engorged tick attachment of about 8 hours, (not there at start of 8 hour auto return trip, arrived with engorged nymph on lower ankle. I removed it, so small impossible to remove without rupturing, no subsequent rash, no flu like symptoms that I can recall, no prophylaxis given. After a few weeks I thought it might be one of the 50% reported not to be infected. I had been attending a rural retreat center in NY State for 10 years, sometime several time a year for a week at a time. Rustic cabins means field mice about and like in and out, not to mention the protected deer population, leaf litter, mature forest, a love in my life which supported me in so many ways.

March 2005  - Life quality had been spiraling downward for since 2003, incrementally and progressively, diet, supplementsi, lifestyle modifications and techniques loosing effectiveness till finally a rapidly downward spiral and I crashed. I lost my business space to burst water pipes catastrophy (due to contractor neglegence in my rental building) stress which I should have been able to deal with but my compensating mechanisms failed in the fragmentation of my life.

May – November 2005  - I rallied to oversee a modular home build project that I knew I would need to move my business, forces the need to oversee the project, it took all my will power to work through the brain fog and fatigue, I was able to hold it together as our house was set in early November, 2005

January to July 2006  - House onsite completion taking so much longer than I could have imagined. Lots of stresses and still downward, downward, downward my energy goes, my cognative decline is becoming so apparent to me I often choose speechlessness to weird errors.

July 2006  - A miss step and fall, off two lower steps in a staircase of 13 thank God, just two steps, I live to write about it, and only one fractured foot and one sprained foot to show for it truely a blessing really, could have well been far more serious. It was a foot drop like miss step, toe down, not heel down, and off I slipped. I know this what happened now because, I repeated this feat once since. Thankfully my second fall was broken by a sturdy contractor preceding me down the staircase that still had no hand rails. My fall was viewed by my husband following me, he told just what he saw. The mystery solved. Or was it? Double handrails on stairs in this house became a priority.

Four months till full soft tissue, ligament and swelling can be forgotten, unable to mentally get the move completed. Cognative issues, immense fatigue, resistance to seeking answers, and then in May 2007 I chanced upon an internet radio program.

Then I begin to find hope.

May 2007  - I heard an internet radio program on Opra’s station. The speaker was Jacob Tietelbaum, MD and he had recently lined up with the Fibroandfatigue.com centers. (I now get emails from endfatigue.com and connecting the dots I decided to go for a full evaluation. Thinking that at least I could get nuetraceutical advice. And a full lab workup.

CFS/FMS diagnosis and C.Pn. positive by Quest Labs antibody titer was the initial chronic bacterial infection that was identified. I was started on high dose doxyi 400 mg/day and was to return in about a month. By my return I had googled and found this site.

June 2007  Started the beginning Antibiotic treatment for CPni. 6/07, Doxy 200 mg. BIDi.

July 2007  MD visit, I reported back that some symptoms were better. However I was in other ways worse and he decided to do the complete infectious sease panel with other bacteria and organisms and virus titers.

August  2007 - Bb postitive by Quest Lab antibody titer.After starting on Doxy for CPn. Sometimes know as an antibiotic challenge in the Lyme community to reveal the existence of a positive lab report. Yes that tick engorgement of 2003 was not behind but still with me. Fibro and Fatigue Center that I attended closed and unless I wanted to fly to the next I needed to find another MD, it took me two tries, not bad really.

August  2007 - Finally figured out how to sign up at CPnhelp.org ( sad but yes I was that Brain Fogged.) Signed on to CpnHelp.org site and started All supplementsi on list under Getting Started Tab at top of website pages (this is where they are located now). Occasional light use of glucose tablets or smarties started for the periods of exhaustion.

September 2007 - Continued to be overwhelmed by die-off and porphoria, tried charcoal and with my med schedule and supplements plus my adversion and my husbands doubts, he works with carbon filtration, it did not work for me. I finally cut back to Doxy 100 mg. BIDi after results of Liver Profile showed moderate elevations. Still looking for Medical Supervision needing to address this issue.

October 2007 - Started Roxi 150 mg BID First attempt at finding CAPi supportive doctor failed.

November 2007 - First Tiniazole 500 mg one pill pulse early Nov.(available only as Tindamax, there only under this US patented name, available as Fasigyn brand or generic overseas.), Second Tini pulse 500 mg BID pulse started as a full 5 day pulse on Thanksgiving Evening Nov 2007, on the 5th day of that pulse I started cholestyramine,I have not pulsed without it and continue to do full pulses and am beginning to lengthen the duration of the pulse. Choleyramine 1-2 packets at HS PRNi, once started I continue for a duration of dosing minimum of 5 – 10 days to achieve porphorin & liposacaride endotoxini reduction effects, and for this purpose I have always taken it well away from main meals and with a small fat stimulating snack to stimulate bile flow which is seen to enhance effectiveness of cholestyramine for Porphoria & fat soluable Endotoxinsi levels reduction.

December 2007 – Second try, I encountered and began to work with a very wonderful Doctor only 2.5 hours drive for me. Considering that I had been traveling 5 hours previously, this seemed close at hand. And he has been wonderful to work with. He understands chronic infection as a part of my cause for CFS and although he had not treated C.Pn. per say was very agreeable to continue me with me in support of the Wheldon Protocol, the form letter here on the site, originally written by Wiggy, and shared by Sarah, I adapted for my diagnosis and it worked. He is following my Liver enzyme elevations and we walk the trade off of chronic but stable liver inflamation.

February 2008 - A consultation at a major Liver Transplant center and another round of viral testing confirmed that the elevation were likely due to Doxycycline Therapy.

March 2008 -I get serious with Vit D3-4000 IU daily supplement, (I worked this up from my usual 400+ I.U. usual dosage over time) with the support of my MD, for nutrition and Osteo-decline prevention, and the antibacterio-cidal-like effect. I also started Magnascent Iodine 8gtts/daily now, as a neutritional supplement and anti-bacterio-cidal-like effect.

May 2008 - Started MD prescribed Bio-identical hormones both dermal and oral for menopause and osteo-decline prevention support as well as for improved sleep and increased daytime wakefulness-energy.

Started Phosphatidyl Serine supplement to support normalization of Cortisol Levels desired effect is to improve depth of sleep (prevent mid cycle waking and to extend duration of sleep. Also have been on Clonazapam 0.5mg HS, one tab only per day to increase length of sleep cycle, one time use each night currently, no daytime use needed since June 2007.

July 2008 - S.O.D.3 [KAL Brand] in AM now instead of devided doses, increased to 1000 mg.

August 2008 - Still working to increase my available daytime energy level to dependable stable state.

SAM-e with Vitamin B in AM, currently 200 mg early AM & mid afternoon (6 AM, 100 mg PM mid afternoon well after lunch.)

Addendum - August 29, 2008 - Today is my help.org 1 year anniversary! And two days ago I decided that my system was loaded with SAM-e and I have decreased for the moment to 200 mg per day.  A different type of headache on awakening gone now at noon.  This is not a fluf substance is an active substance IMHOi.   I also cleared a bit of porphorins after a few nights off cholesty with a dose last night.  I can see why if one had mania SAME would be not a good fit.  Actually, I have yet to have that kind of energy but well, I am baseline pleasantly pleasant and doing more.  Looking forward to the long 4 day weekend and some catching up quite possibly as this improved state holds on, will see.  Will add an update to record post adjustment perspective, after the Labor Day Holiday.  I posted a write up about Same-e as a thread if you are curious and of course you can do your own web search as well.  Happy Holiday US folks.

Calcium Pyruvate3.75G once daily Taken mid afternoon, well after lunch, I had worked with this over the past few months but needed the powder capsules to become regular with it as an energy support only. My Abxi are taken early AM, late afternoon and at Evening meal (this amount of Calcium Pyruvate based for me on my current body weight, 127 lbs.). These neutraceuticals are being used by me to enhance my cellular energy production and my decrease my baseline fatigue level, which is a primary presenting symptom for me. (It is used by others for other aspects of its effects as well.)

This overview will see more additions and some rearrangement as I recall details or add facts.  

And a note for future readers, The signature below changes periodically and if you read this in years to come, it may not be in line with what is written above and not make sense with what finally becomes this completed blog page.

  • 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
  • <