Thoughts and prayers for our dear friends Red & MacKintosh

Submitted by Twickle Purple on Sun, 2008-07-27 15:12

Dear Dan,

You have been a light for me in my darkest times. I have followed your posts and your journey with a sort of awe -- you are such a wise and sensible fellow who is also warm and gracious -- I think you are one of the best sorts there is.

Now I have learned of the terrible heartbreak that has befallen you, such a lovely person, and I know there is no karma in this insanity! Irrational as it may be, I feel an anger at the unfairness of it all.

Four Week Fallout

Submitted by kitkat2 on Sat, 2008-07-26 23:56

One full month off all abx 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.

third pulse

Submitted by Daniela on Sat, 2008-07-26 17:24

with some trepidation I started the 3rd pulse. Only day three was somewhat different. I was tired and irritable but perhaps it was also full moon. Embarassed I am a lucky woman to sail through like this! In spite of the short comings like putting on weight , specially the last few days and some minor side effects. Is it possible that Flagyl has something to do with gaining weight? Perhaps it is a late symptom as I have stopped smoking almost 6 months ago.

Steve J's Update: He's Off...and On

Submitted by cypriane on Fri, 2008-07-25 17:16

We are back from our trip and sort of rested. Even though I had given Steve something to even-out his emotions, he still wept all the way as he walked our oldest daughter down the aisle.  The elevated emotional state made him a bit tottery, but she did a good job of anchoring him.  He even made it fine through the traditional father-daughter dance.  Thankfully, he had more energy than usual on the wedding day and lasted well through the long reception afterward.   Thanks to the cooler weather (and not working), Steve was in good shape for the entire trip, and he even cheated on his gluten/casein diet quite a bit without much ill effect (his leaky gut is much better than it used to be).

New to this...anyone know of great Dr.'s in Hawaii

Submitted by lostcar3 on Thu, 2008-07-24 16:00
I have been going through the ringer for years and finally I am finding information that makes sense to the way I feel and the types of symptoms I have.  Does anyone know if a Dr. in HI that is familiar with Cpn or the likes?  I am isolated here and need to find help.  Thanks....hopeful!Smile

RNase Enzyme Deficiency Disease

Submitted by Tina on Thu, 2008-07-24 14:40

I have recently been been exposed to some information about RNase Enzyme Deficiency Disease (REDD).  Apparently, exposure to a toxic toluene chemical damages the intracellular RNase enzyme which compromises the cell's ability to defend against invasive pathogens, like mycoplasm and virus's ( and chlamydia?).  Hence the individual can become infected with multiple stealth organisms resulting in chronic, debilitating illness.  Could this be another another piece of the puzzle? 


Interesting visit to pharmacy!

Submitted by Todybear on Wed, 2008-07-23 16:33
Today I went to get a refill on my Doxy 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 CAP and the Cpn. 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.

Red and firey sun effects!

Submitted by Todybear on Wed, 2008-07-23 11:11
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!

Searching for years, not giving up !

Submitted by WANDA on Tue, 2008-07-22 12:42

Hello all! Im Wanda and Im an advocate for my hubby, who went from perfect health to progressive decline starting 2003, we have been married 27 years and still adding on. 3 kids (2 grown) 1 dog, 2 cats.

Im learning how to navigate this site and post, so please forgive me as I learn. Im not sure if I will find hope here, any input is appreciated!

2003 he started with flu like illness extreme fatigue few small bite? on chest, fever, which developed in to what appeared to be hives? Doctor said hive, stress...xanax!, prednisone does pack...Prednisone did nothing, Next doc drew blood for lymes etc. put hubby on Doxy for 10 days...