One full month off all abxi per severe prophyria.  During that time, I tried adding Iodoral to my skeleton crew of supps.  12.5mg tab did nothing, 25mg caused increased clonus, 50mg caused pounding heartbeat/insomnia/spasticity.  I shelved it for now.

I also restarted Wellbutrin XL to deal with increased depression/fatigue.  It caused increased clonus and some vague vision problems.  I shelved it, also. 

 My whole purpose in life has boiled down to reducing clonus at virtually any cost.

Ten days of being downstairs now in my 'second' bedroom.  I have not even ventured to try ascending the stairs just yet.  Consistent trouble continues with even my good leg--cannot lift or bend it much at all.

After nearly three weeks of living in and around my bedroom[and too discoordinated and weak to go elsewhere] I have come downstairs.  My sons set up a bedroom for me in my husband's office on the main floor right next to the powder room and just a few steps from laundry and kitchen.  I thought I'd be much happier, but the weakness and tight/wobbly, halting gait make me feel afraid to ambulate.  I force myself to traverse the length of the hallway[the one I had the energy to paint in March] twice daily by pushing a travel wheechair with hand brakes.  Each step requires much thought, planning and concentration.  Tiring and humiliating, but somehow through my fear I am doing it.  

 

Time for a record keeping update.

 

The blog I just spent an hr typing just disappeared when I hit a wrong key....hmpf. So I will attempt to be brief. Great Milestone: I took experimental Prilosec with Pyruvate from mid Feb '08 to Mid April '08. A very hopeful and happy time during which I cleaned my entire house and re-painted. It was like a magic bullet. Not-so-great Milestone: Stopped the Prilosec as it caused constipation and switched brands of Pyruvate as the cayenne hurt my stomach. Downhill from there with increasing spasticity, bladder spasms, nausea, leg heaviness, weakness, knee joint swelling and extreme difficulty walking.

With Springtime finally here and things going so well for me I thought it was about time for an update. Since the inclusion of Prilosec OTC and Calcium Pyruvate six weeks ago I have improved tremendously! I also added in Inositol and Ribose, and have doubled the Norwegian fish oil caps to support my nervous system while I discontinue antidepressants. I am still waiting for the other shoe to drop but here are the changes: 1. Able to successfully discontinue Wellbutrin XL 2. Able to tolerate Flagyli pulses now [timely and full dose] 3. Able to tolerate 600mg NACi daily[first time since I began CAP] 4. Beginning to gradually reduce Zoloft and Trazadone 5. No more strep-throat type neck aches, etc 6. Previously chronic low grade temp. is now a RARE event

A little wordplay to celebrate my current state of relative wellness. My trial of pyruvate/Prilosec one hr before abxi has been a tremendous success! I began with my last pulse. While I have been waiting for the other [horse]shoe to drop, I just keep feeling better and better so have decided to post my results. Not only have the nearly constant strep-throatish aches, ear pain and burning myalgia been quelled, but I also can now take 600mg NACi once daily! I suspect that I can also do regular, timely pulses now. I will start pulse #21 this weekend....AND I feel READY to do so.**Wow!** Of course I have hit the supplementsi extra hard to deal with porphyriai, but I think the "py-Pri" combo has been the answer for me. I must have quite a bacterial loadi.

I want to share that my very vibrant father passed away today. He was a fighter though until the end. He was 86. I am remembering fondly how he was the always optimistic rock of our family, a lark who was always whistling happily even when my dear mother, God rest her, was worried or anxious about something. I adopted that way of life when I was blessed with my three children, even since the msi diagnosis six years ago and throughout the past 2.5 years on the CAPi. It has been challenging especially when they see me seeming much worse, like today for example; fraught with grief I cannot get either of my legs to bend at all and I am feeling scared. If only I could get these darn muscles to relax. Anger and fear...that is what I feel, but mostly very very sad. -kk2

Finishing up pulse 20 this week. One pill each day X five days. I can manage it. Pulse 19 in Nov '07 was a whopper[3X/day, 5 days]. The burning myalgia, strep-throatish aches, mild fever and spasticity sent me searching for my dusty old bottle of Baclofen....and ibuprofen. It easily took two months to recover to baseline and during that time I lost huge clumps of hair on a daily basis. Sarah will want to know that I had to clean the shower drain for the first time in two yrs. In other words it was clear that there was a lot of die-off. A. Lot.

As you may know, my 85 yr old father in AZ had a stroke several weeks ago. His recovery has been stinted by a chronic infection[sound familiar?] He had developed sinus infection/bronchitis in early January, then had the stroke while on his eighth day of nebulizers and Levaquin. The stroke doc at the hospital knew nothing about the infection so he deteriorated. He had brain inflammationi which made him sleepy and non-interactive and he could not get rid of the increasing secretions on his own. The doc eventually honored my request to restart and complete the Levaquin.

I have been maintaining since my last pulse in Nov. '07. Lots of aches, pains, numbness and stiffness with continued difficulty ambulating. After over two yrs on the capi, and 19 pulses I am feeling a bit low. My cap doc and I have revisited the possibility of lyme testing via Igenex. I hesitate as it is expensive and I tested neg for lyme and co-infectionsi six yrs ago after my msi dx. Apparently now there is an abxi challenge test which might be worth a try. Sometimes I wonder if it is just ms, and I am just in denial?? This is a possibility that I simply do not wish to face.

I have been counting the days since pulse 19 and waiting for some sign of improvement to indicate when pulse 20 should commence,but no such luck. The myalgia/inflammationi set in within 3 days of starting #19 and has remained firmly entrenched. Advil round the clock helps a bit. Pain has cropped up in surprising places: neck, shoulders, tight, ropy spinus erectus muscles have been the name of the game making ambulation so trying that I have found myself in tears just attempting the simplest things. I think I feel worse than I did two weeks post pulse. I admit some of it must be posture-related as I have been too tired to do much. I can be tough about this, but I fear another pulse may just worsen things further?? Am I wrong? -kk2

Three days into pulse 19. Just wanted to post for the record. It seems that it has taken sooo long to arrive at 19 after so many delays. This is my first pulse since increasing the amox. and starting LDNi and I look forward to finding out where the dust will settle. So far, just more sleepy/fatigued. The high energy and pep of last week has waned a bit, as expected. -kk2

Posting now after increasing my Amox and adding LDNi to my regime...I have successfully gotten past the LDN-related "cement legs" and yet the improvements just keep coming. The Amox. has definitely reduced knee swelling and related pain. My left knee is now about the same temp as my right--a first. I can stretch further which feels almost strange--imagine muscles as tight as thick rubber bands able to be coaxed beyond previous comfort limitations. The LDN has taken some getting used to[initial increased spasticity], but am sleeping way better than before AND my initiative to conquer daily 'chores' has drastically improved. So I could just say that my energy is better, but it's the desire to accomplish things that I have noticed.

Update: I have increased my Amoxicillini to 1GM twice daily, also splitting my Doxyi doses to twice daily instead of all at once. I believe that the increase in Amox has allowed me freer breathing in both nostrils[new improvement] and my hearing is better. I noticed the clock ticking yesterday and I do not think I have heard that in over a year! I have lost 30 lbs since June through a steady effort of avoiding sugar, and the kitchen for that matter. I have found a less fattening way of preventing stomach upset with all these pills I take. An apple or half a banana beforehand seems to work. No more pb&j.