I have tried all the anti porphyriai [2] measures here. None of them worked to any great lengths. I knew I had to deal with it after testing positive. I started taking plaquenil every other day at 200mg. It works and pretty fast. The Panic is gone, depression is gone, urinary retention is gone, heart palps are gone leg tinglys are gone. My pee is clear. I know that llmd's use it as a cyst buster and it has antichlamydia properties. I feel awful about an hour after I take it but when that clears I feel much less porphyic I don't know if it will continue with pulses. I have postponed pulses until I get more stable switching back to minoi [3] and adding biaxin.

My doctor took me off brand name minocin because of slight blue discoloration of my inner lips. She told me it would work the same. Well I am here to tell you it does not. I felt much better on the minocin. I also noticed that minocin is in the vanderbilt patent as the perferred drug of choice. The pigmentation has gone away but I feel like crap. I don't care if I end up having to join the blue man group. I am going back on the minocin at my next appt. Has anyont had a similar experience?

I just had my doctors appt. yesterday and thought I would share the results. First she switched me from minocin to doryx because of blue discoloration of my lips. It has all gone away. I was very leary about switching because I have always heard that minocin works better. The first 2 months were rough. I assume now that I was herxing. I have never experineced the severe pain during pulses that I have gotten with the doryx. I have to say though the improvements have been signifigant. I have had dramatic facial reconstruction that Dr. Wheldon has talked about. Enough for everyone to notice. Energy is way better. Insomnia is gone,IBSi [6] still gone,dryness is extremely better. I had an eye dr. appt. and have lost the plugs in my eyes and did not even notice.

I have not blogged in awhile. I thought I would update since some interesting things have happened. First my IBSi [6] seems much more stable which makes me one happy camper. Pulses are still just as brutal but I suspect I am getting deeper into the layers of infection with each one. Second my mood,brain fog and fatigue are much better. Perfect yet... no, but working on it. I also got a sense of gp becoming reluctant at the treatment timeframe. So I thought I would make an appt. with a llmd. I had her do a 24 hr urine test for poryphins and quess what I was positive. I was happy and sad at the same time. Also husband was tested and yes he is strongly iggi [8] and igm positive for cpni [9]. He has started his doxyi [10] yesterday he had already started naci [11] months ago.

I finished lucky 13 on Tuesday. 3 days 1000 2 days 500. It ran the same pattern. I start the pulse, first the fatigue sets in then the depression. I then get a day that I think nothing is happening then wham pain,dry,weakness. It is mostly gone by 4/6 days past pulse. It also seems to move downward starting in my head neck area moving to my shoulders then eventually ending up in my hips and legs resulting in hip pain and leg weakness.

Pulse 12 is over. 2 daysx1000 3x500. It was a difficult one. The after effects lasted 5 days. I am glad to be done with it and looking forward to the next one. I am having improvement in all areas. I know it will not hold until the next pulse but maybe I can get a few extra days. David had mentioned that the pain was mostly gone by midnight. I am having the same experience . I had severe gland pain that would come on suddenly and vanish by 10 or 11 pm. Anybody have a guess as to why that time frame? My husband did not have business travel during this pulse. He felt sorry for me. He, however is going to Las Vegas for a conference this week. Maybe next year I will be well enough to accompany him. Here's to hope.

Pulse 11 ended last tuesday. 1000 1day 500 4 days. It has been a terrible month without a break. The whole family has a virus which I got but presented with a flare. I have been having extra muscle weakness but my some of my big symptoms glands being inflamed and dryness have gotten better. I have also been having alot of muscle pops that are just starting to settle down. Sleep is also getting better. It is a little confusing that while some things are getting better other things which were not a problem are worse.

I finished pulse 10 on wed. 4 x 500 1x 1000. yes that's right folks you read it right 1000. The usual pattern .....disrupted sleep,depression (milder) ,anxiety (also milder). It fools me while I am taking it that I am handling it., ugh the week after. This time I am having pretty good chills and pain in my calve muscles. I hope it ends like it has the last 3 times at 6 days and improvements follow. On a side note my saliva is better not normal yet but much more comfortable.

I completed pulse 9 last thursday (5 days x 500). I did not increase because of the holidays. I indeed have a pattern. I quess my load is coming down a bit to be able to notice feeling better instead of bad bad bad. It included 2 days of extreme fatigue when that lifts the nuero and pain start. At 6 days post pulse I am out of it and noticing improvements.It was pretty well tolerated so it is time to increase. Unlike my first 3/4 pulses that left me unfunctional for weeks. I actually went all day yesterday and ENJOYED parts of it. We went downtown to watch the people ice skating I even wanted to try (wow).ahhhhh life again My husband just had a thin coat on and was cold so we chose to go out to dinner instead. I talked with the bossman about some concerns I had and this is what he said. easy bruising (common stick with it), platelets rising (common stick with it) menstrual disturbance (also common stick with it. The next pulse  I am adding 1 or 2 days of 1000.

Out of the blue I was hit with porphria 4 days ago. I was scheduled to start a pulse yesterday. Call me crazy but I did start even with christmas coming. Heart palps that wake me up, panic,depression, foggy. I did nothing that I can think of to cause it. Maybe it is a psuedo flare. I want to put it blog form to track it maybe to find a pattern, Why is it worse in the morning.

 

 

 

 

 

 

sjogren's (03) capi [21] 12/05 minocin, zithromax , flagyli [14] pulsed  

I finished pulse 8 last thursday. I am doing okay. So I quess I am starting to tolerate it better. I think it is time to strart increasing to 1000 . I had alot of dryness and fatigue fatigue fatigue this time around and only a little depression. I think I will do 500 again for the holidays and increase in Jan.

I am scheduled for a pulse this Friday. No way can I do it along with cooking Thanksgiving dinner. I have decided to postpone it until the Sunday after. What I am noticing is the pulses are hitting faster and deeper. It hit my upper back this last time causing muscle spasms that made it difficult to breath for 11 days. Muscle weakness and fastulations which are new hit too. I also had some fibro trigger points ache soooo I quess I have a touch of fibro. I don't seem to have the 3 day grace period as before. It flattens me on the second. I have had more good days this month even some downright I feel normal hours. It gives me the courage to slam myself again.

Happy Thanksgiving to all who celebrate.

I completed 5 days of 500 yesterday. It hit on the second day. Fatigue ,brain fog, panic, depression and so on. The good news is nooo toilet fun. The weird news it that on the 4th day I felt calm with only a couple bad episodedes during the day. This am I woke up with a very strange feeling of strong contentment. Does this sound familar to anyone. I like the feeling I wish it would last. I also do feel symptom relief. Mind games are the hardest part.  My husband always just happens to travel to Texas for the week of my pulses. I hate being alone but much easier not to have to cook. I also think my kids like me on a pulse I am dumb and don't care enough to nag them. Next time 1000!!!!!!!!!

Happy Halloween . Good luck to everyone on chases this goblins away.

 

I did 4 x500 and faired well. One day of crying ,1 1/2 days of toilet fun. Also interesting is one night of pretty good ovary pain. I am finding that it is hitting me faster. When I started it always hit on the 3rd day now it hits on the 2nd.

I know that most people would not consider 3x500 a true pulse. Given the location of my problem (throat) I have to go slow.  I had the normal reaction on the 3rd day the fatigue and brain issues started and then the bowel issues. It all lasted about a week so next time I go 4 days maybe 5 with the kids back in school. I also developed a rash on my back. I was told to ignore when it was checked by my gp . I have also increased the naci [11] to 3 x 600 daily.