Yay!!!!

after several months of waiting, I believe I am finally having another episode of intermittent Porphyria. Stabbing pains in abdomen, hands and feet began on friday and I now have a low grade fever, difficulty eating and going to the bathroom and my urine came out kinda pinkish this morning. Yay!!! This is what I have been waiting for!. I will begin the 24-hour test first thing in the morning. I have never been so giddy to be in so much pain...lol

Grrrrrr

I am feeling major frustration today. After exchanging emails with my doctor, we are no closer to a game plan for dealing with the porphyria that is interfering with my lyme treatment. My legs are responding a little better today after spending most of yesterday in my wheelchair, and I have not used my cane since I woke up, but am in more pain. My pee has been sort of milky/cloudy since yesterday. I have noticed this several times in the last few months, and I'm not sure what it means. I will bring it up with my doctor at our next appointment on the 22nd of this month.

Pothole

I have hit not a speed bump, but a pothole on my road to recovery. After nearly 3 months of pain, appetite loss and severe weakness I feel I am about to lose my mind. I have lost 10 lbs and have been in the hospital twice with heart palpitations and trouble staying on my feet. My doctor believes I may have a rare blood disorder known as Porphyria. The type she suspects I have is acute intermittent which means it comes in the form of painful "attacks" which can last for days or weeks. Testing to determine if one has this can only be done in the worst part of one of these attacks. I have the kit to test at home and am waiting for an attack..after that it will be several weeks before the results come in. In the meantime I have gone off all of my Lyme meds, as my body is simply too weak to handle the herx reactions :(
I have been attempting to broaden my circle of support by calling friends and family in town for help with fund raising and emotional support. But most of my contact has been either brushed off or completely ignored. I am now looking once again outside my dwindling circle :( This is a sad time for me....one I look forward to overcoming.

Here is an excerpt from Genetics Home Reference about Porphyria:

"Porphyria is a group of disorders caused by abnormalities in the chemical steps that lead to heme production. Heme is a vital molecule for all of the body's organs, although it is most abundant in the blood, bone marrow, and liver. Heme is a component of several iron-containing proteins called hemoproteins, including hemoglobin (the protein that carries oxygen in the blood)."

"......acute porphyrias, primarily affect the nervous system. These disorders are described as "acute" because their signs and symptoms appear quickly and usually last a short time. Episodes of acute porphyria can cause abdominal pain, vomiting, constipation, and diarrhea. During an episode, a person may also experience muscle weakness, seizures, fever, and mental changes such as anxiety and hallucinations. These signs and symptoms can be life-threatening, especially if the muscles that control breathing become paralyzed. Acute porphyrias include acute intermittent porphyria and ALAD deficiency porphyria. Two other forms of porphyria, hereditary coproporphyria and variegate porphyria, can have both acute and cutaneous symptoms."