Lyme & Polycystic Kidney Disease

I have a genetic condition known as Polycystic Kidney Disease. I'm in my mid 40s and they say I won't live past sixty, but other than an occasional stone it doesn't trouble me.

I caught Lyme disease in 2007 and this is a common source of adrenal fatigue. The two together left me absolutely miserable. I had a headache every single day, any sort of meal with protein could trigger migraine like symptoms, and I had miserable constipation.

I started taking DHEA on my doctor's advice, got referred to a good Lyme doc, and he put me on Fludrocortisone to boost aldosterol levels and cortisone to get my cortisol levels into the normal range.

It was practically a rebirth; I went back to work full time, I could exercise without making myself sick with flu like symptoms for three days afterward, and in general I went back to what a man in his mid forties should be.

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Sep 07, 2011
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Have hope
by: Paige Donna Myers

Hi there, I have p. k.d, this year it will 18years its been tough but you can live a long life. I'm 46yrs I have good function, I also have an aunt who had a transplant for fifteen yrs. Once you take care of yourself you will be fine. I hope this helps some.

Nov 03, 2010
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PKD
by: Anonymous

Please don't say that you won't live past sixty because you have PKD! That's a complete untruth and you should be more conscientious of what you put on the web. Someone newly diagnosed with PKD could see this post and freak out!

There are 600k people in the US with PKD and nearly 2.5 million world wide. It is the most inherited genetic disease known to man. In 50% of the cases the patient will end up in renal failure and need a transplant or dialysis. Most of those patients are in their 50's or 60's when that occurs. Transplants last, on average 10 to 15 years and there are people who have been on dialysis for twice that long. There is no decreased life expectancy for people who have PKD! The other 50% who do not go into renal failure, live a long and normal life with a normal life expectancy.

If you are in your 40's and have only had problems with a stone or two, do not have high blood pressure and have normal kidney function, then there is a high likelihood that you have the less aggressive form of PKD. (PKD2) Patients with PKD2 rarely, if ever, go into renal failure and if they do it's when they are in their 70's or 80's.

Most people with PKD1 start having problems with their blood pressure in their 30's and are already experiencing a slight decrease in function. By the time PKD1 patients are in their 40's they are seeing a nephrologist annually and have even more of a decline in their function. Even the PKD1 patients have a 50% chance of dieing from old age before their kidneys quit working.

Please go to Daily Strength and search for the PKD support group. There are a lot of well informed people on that site that can help you understand PKD better and hopefully, take away some of your fear that you've only got about 20 years to live!

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