My daughter came home from school yesterday and said these beautiful words, "I feel good.  I had a great day." I had to pass this on to all of you who have walked this rocky road with us.  Also, when I saw this photo of her with her siblings taken over the holidays, I just had to share it despite its blurriness.  She looks so happy and healthy.  She is in the blue dress. 

What a difference a year has made!

Maria

My daughter has been on CAPⁱ for about a year.  We first discovered that a chronic cpnⁱ infection could be causing the myriad of symptoms my daughter had been coping with since a mono infection, in Oct. 2008.  I am happy to report that after a very difficult period last winter and spring, her health has improved dramatically.

We returned from the beach today and I am happy to say all went well. Before the trip I was worried about how my daughter would deal with the sun sensitivity issues associated with doxycycline.  Thankfully, her conscientitious efforts to apply sunscreen regularly, lots of time under the canopy, and several cloudy days all combined for  minimal discomfort. She got a little bit of color but no sunburn! Ironically, she came down with a cold about half way through the week and that was a bigger problem than the sun. Despite the sniffles, we had a great trip!

My daughter is battling a yeast infection.  The doctor prescibed diflucan as well as  nystatin (for thrush). She has also changed her diet to eliminate sugar and she is taking probiotics.

 She finished her fourth flagylⁱ pulse about ten days ago. Over the weekend she seemed to be recovered from that pulse then by the beginning of this week she was feeling awful again.  It finally occurred to me that she is dealing with die off from the candida.

My daughter continues on with treatment.  She has good days and bad days.  I have grown accustomed to this two step forward, one step backward way of life....well almost.  I still have a the feeling of hope on her good days that maybe we finally have this infection figured out and she is on her way to all good days.  Invariably though something comes along that causes a set back.  So on we go.

A few weeks ago, I posted that my daughter was doing pretty well except that she had developed chapped lips and was having increased acne flare ups.  The acne abated and the chapped lips continued though she did not mention them that often as she came down with a cold and then the stomach flu.... other things were making her feel even worse so the chapped lips were not such a concern.   During the time she had the stomach flu, she naturally was not taking her medications/supplementsⁱ and shortly after she recovered she commented that her lips felt better.  Then a few days after that she mentioned that her lips were starting to bother her again.  These comments made me think that one of the many pills she takes might be the cause of her chapped lips.

My daughter completed her first pulse a couple weeks ago and felt pretty good for a few days after it.  Then she came down with a really bad cold.  This dragged on for days and just as she was getting over the cold she came down with the stomach flu.  Ugh. So for about the last ten days she has felt pretty awful.  Her head hurts, she is apathetic, moody etc...She tearlfully told me the other day that this has been the worst year of her life.

I knew that it would not be smooth sailing but it is frustrating to feel like you are making good progress and then be derailed by something other than CAPⁱ or cpnⁱ. Of course, we have let some of the moppers slide so I am sure her porphyrin lode has risen which can't be helping. 

So my daughter completed her first official pulse a few days ago.  I waited to post about it to see what kind of reaction she would have post-pulse. I think it is safe to make a few observations about it now.

Once again I come to all of you needing advice.  My mind is really spinning as I try and figure out a new and improved schedule for my daughter's medications/supplementsⁱ.  I have a few questions:

1. The info. sheet for the cholestyramine says to administer medications one hour before or four hours after taking the cholestyramine. For all of you who use the chole. do you find the four hours after necessary or is it possible to shorten the time?  My daughter finds the chole. beneficial but waiting the four hours before she takes more of her many pills can make scheduling difficult.

My daughter's is slowling progressing through treatment.  She saw the doctor again this week and he added azithromycin 250mg MWF to the doxyⁱ 100mg that she has been on for about a month.  As far as I can tell she has not had much of a reaction to the abxⁱ good or bad compared to her reaction to NACⁱ and Vitamin Dⁱ.  The NAC at 2400mg as well as Vitamin D at 2000 IU made her feel awful.  We cut her daily dosage down of both of those.  She also continues on with Armour.  

I just wanted to give an update about my daughter's visit to the doctor yesterday.  I think it went very well and all of my concerns were addressed.

As you may recall I was concerned that my daughter's thyroid might be underperforming.  The doctor reviewed my daughter's blood work as well as listened to the long list of symptons and also agreed that she could use something to boost her thyroid.  He is putting her on Armour.  We will start off slow (just a half a tablet in the morning to start with) to find the dose that helps the most with out side effects.  

My daughter is currently taking 1800mg of NACⁱ.  She takes one 600mg pill in the morning before school and two 600mg pills before bed.  Could NAC cause her sleeping problems?

 She takes melatoninⁱ (3mg) at bedtime to help her sleep.  She has had sleep issues all her life.  Her biggest problem has been being able to fall asleep.  Once asleep she usually is able to stay asleep.   One of the things that she has counted on for the last year and a half is taking a nap after school.  For the last two weeks she has been unalbe to nap....she just can't fall asleep as she says her body is exhausted but her mind won't turn off.  She is currently getting between 8 and 10 hours of sleep a night though she wakes up unrefreshed.

As you may recall I joined the group a couple of weeks ago to better help my teenage daughter who was recently diagnosed with cpnⁱ.

My daughter has slowly increased her NACⁱ dose and is now up to 1,800mg.  Hopefully, she will start ABXⁱ in a few weeks -- once she has been on 2400mg of the NAC for two weeks.  She also takes most of the suggested supplementsⁱ.

She continues to feel pretty rotten most of the time.  Headaches, neck ache, fatigue continue.  The brain fog may have lessened a bit.  She is still managing to attend high school though her schedule has been modified to make it easier for her.  Her mood seems to be a little better as the episodes of depression have abated which I think is due to the changes we made in her schedule.

I have recently joined cpnhelp so I thought I would write a post to introduce myself and explain how I found myself here.

I am the mother of a teenage daughter who has recently received a tentative diagnosis of Cpn by her doctor.  Until a week ago, I had never even heard of Cpn! My daughter's doctor directed me to this web site so I feel that we have won half the battle just by having a doctor that seems to understand or at least support the diagnosis of this disease.