My last pulse ended Sept 26 and since then it has been a gradual increase in energy. I have been sleeping very soundly and have not needed a nap during the day. I have felt an insurgence in creativity and self motivation. My head is clear and my thoughts are very rational. I have suddenly found some tasks as important that I had sloughed off as insignificant and managed to accomplish them.  It appears to me that my "give a darn" has been repaired (after a long time of being busted) which has left me feeling good in my own skin. My upper body and core strength seems to be really good. My legs still get fatigued and reach failure but definately better than after the last pulse. I have to say that all of this has my husband and family encouraged!

Doing a full 1500 mg pulse as my #4. I feel absolutely nasty. I have taken some charcoal and ate glucose but feel pretty sick. Why am I telling you this? I don't know, just complaining I guess. I was cold so I turned on some heat, now I am boiling hot with a flushed red face. My neurpathic pain on my back is burning like a hot poker and I have pretty bad nausea. I felt it was time to pulse because I was able to mow my lawn this morning after having leg failure for three weeks. I am going to take some melatonini [3] soon and go to bed and hope to sleep. Argh, this is not easy, is it gang?

I am not improving since ending my last pulse August 27th. I should be starting another pulse this week but I have not bounced back since last pulse. I have this strange burning sensation on my left side of my back that feels like I am standing against a space heater and my legs reach failure very quickly. I am discouraged because I did so well after my last pulse. I haven't left my house much in the last three weeks and it is depressing me. I don't have an active social life at the best of times but I have gone from little to none.

I have read somewhere about hair loss and regrowth somewhere here, but here's something that I did not expect.

 I had my hair cut and highlighted yesterday by my slylist who has been doing my hair for years. She was not aware of the treatment that I have embarked on so her comments were entirely spontaneous. As she was working on my hair, she said to me that my hair had grown in thicker! Interesting! I have never had super thinning hair, but it has been fine and even fragile. She said that my hair had grown in thicker and stronger in the last few months. Neat!

After the last pulse, I have not regained my leg function. I have read as much as I can here about this sort of phenom, but I am still nervous. When first beginning the treatment protocol, I could walk about 30 meters and then over the next few months I was able to increase to two km. After my forth pulse I am back down to very poor leg function again. I reach leg failure very quickly. I had to go and wrap my grape vines with bird netting this morning as the grapes are getting ripe, and it was so very difficult that I thought I would not accomplish it. It was sheer stubborness that kept me from collapsing. Can I expect this to pass? Do I continue with the pulsing every three weeks despite the setback?

I finished a pulse four days ago and am still feeling tired and legs are still weak and wobbly, but today I am experiencing something unfamiliar. Early this afternoon, my eyes started watering profusely and of course then my nose started running. This continued for most the day and now it's slowed down a lot; just a slight sinus feeling. Could that be a porphyric effect? It's not painful, just curious if anyone has that kind of reaction. It's not on the list that I can see. It's almost like the old NACi [8] flue.

I am not going to make it four days on this pulse. I felt this building yesterday; had to spend the afternoon in a semiconsious sleep in bed. I got up this morning after a lousy sleep feeling like the world was on my shoulders. I had a huge meltdown within the last couple hours and I decided I could not complete this pulse as planned. I have taken 3 days of 1000 mg Flagyli [10] and hoped to do 4 but am calling off the forth day. Feeling like a junkyard today. Ugh.

So I am home from my trip and managed well till I got home. After the first night at home I wakened to a tremendous fatigue and troll like symptoms. I managed through the unpacking and laundry etc, then decided it must be time for a pulse. It is a couple days early but after the last one I felt so good that I am striving for that again. I did 1000 mg yesterday and today, and I will see if I can last for four days in total. I definately feel some dieoff today, but I am not complaining; I hoped for that. My feet are burning, I have nausea off and on and what I call rubber legs. I took melatonini [3] last eve and I slept for 12 hours nonstop. I will repeat that tonight as I don't sleep super well on Flagyli [10]. So all in all, no bad stuff to report; just plugging away at the CAPi [12].

I am still on vacation a long ways from home. I finished a pulse a couple days before leaving for trip and so got my usual porphyric rash on the trip down. After I got here (21 hour drive split into two days) I started to prepare for my parents 50th anniversary/family reunion bash. My sister and I planned the event and did all the preparations. We cooked for three days and did mounds of other things. The bash was yesterday and I managed better than I have in years. My legs were tired but I kept up to everyone. I don't think anyone else noticed because they haven't seen the MSi [14] progressing over the years as I don't live here anymore, but I was amazed. I didn't get great sleeps so thought I would be wasted but still have more "kick-butt" type energy than ever before.

Against the advice of my friends here on this site, I embarked on pulse number three today just a few days before I leave on a two week vacation. I can't see any other way. If I skip it, I will be six weeks between pulses, and at this point in my treatment, I am not willing to interupt treatment that much. I am hoping and praying that this pulse will be like the last in that I will not suffer too much. The only problem last time was the terrible rash that I got after the pulse when I went and spent a day at the zoo. I won't expose myself to sun this time for sure. I am not fully recovered from the last rash. I still have some redness but the pain is gone. I went to the beach yesterday but spent the whole time in the shade of big trees while my family was in the sand. I didn't mind tho.

I pride myself in being a tender hearted, compassionate and caring soul. I try each day to put myself in the shoes of the people I encounter and hope that I can show them kindness and bless them in some way. Unfortunately I am not always sucessfull but it still is my personal mission statement, if you will.

In the last few years I have really discovered that I have major vision issues when I get overly warm or even have a hot cup of coffee or a hot meal. Before my current sun induced skin problems, I would do some yard work in the heat and the first thing that would happen is I would get blurred, blotchy and frustrating vision. I wear presciption glasses but they become completely ineffective at times such as these. If I have a hot drink I know better than to sit down and watch TV because I don't see well while drinking a hot beverage. There are definately other problems when I get warm, but the most obvious is the vision. I even have trouble reading or keyboarding at computer unless I am cool. It's something manageable, just frustrating.

Today I went to get a refill on my Doxyi [19] and the pharmacist came to find me in the store after  she filled the prescription which was a little odd. Normally they just call your name. She wanted me to tell her all about how the treatment was going and why I was on it etc. I gave her a summary explanation and she seemed to understand the rationalle behind the CAPi [12] and the Cpni [20]. She was totally onboard that it made perfect sense and certainly understood that Doctors are hesitant to prescribe something like that because of liability. It was encouraging to see her so interested and I was happy to have the opportunity to talk to her about it. I was able to share with her the improvements that I have already made and she was most impressed.

My family and I went on a day trip yesterday and I attempted to keep up. Big mistake. First thing we went to play 18 holes of mini golf in the sun. I lasted about 10 holes and then started to feel some real burning on my shoulders and arms and started to really play out. I sought out some shade and gave up while they finished. I had applied SPF 45 sunblock a few holes into the course. Then we went to the zoo. Bigger mistake. My husband had to rent me a wheelchair and make repeated trips to the concession to supply me with ice to put on any available skin. I put it in my shoes and pockets too. I was wearing white so you could not tell it was wet fortunately. By the end of the day I was in utter agony. My arms were like they had been branded with a branding iron. Terrible pain!

As the date neared for my impending Flagyl pulse, I felt anxiety and tension about it as the last pulse was nothing but ugly. I magaged through this past one without any carnage or burned bridges! I did double the dose of the last pulse; however, still ramping up towards full dose. I was fully expecting to feel the insanity I felt last pulse but this one was far more manageable. I was tired, has some nausea late in the day and my feet stung. (Not "stunk", that was not a typo.) All Ok with me just as long as the Wicked Troll stays under wraps. So I guess the pulses vary in effects. I am feeling pretty strong two days after the pulse as well. The weather is turning hotter and more humid so I expect that to tip my ship a little.

Carry on......