LymeNet Flash: Does it ever end?

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Does it ever end?

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Topic: Does it ever end?

cozynana
LymeNet Contributor
Member # 34270

posted

Four weeks ago I was on top of the world and feeling almost normal. About a week and 1/2 ago I started feeling symptoms coming back.

I call the endo surgeon and she said everything looks good from the parathyroid surgery.

I said no it is not, my PTH is still elevated, my kidney levels are wrong, and I feel worse again.

She dismissed me and said to get a hold of my GP.

I called the regular endo and she said to wait six months and have the levels rechecked. Nothing like dropping the ball.

I called my Uro. and she said there is something wrong in this picture.

She is going to start with the low thyroid numbers, try to figure on the dehydration, and see if they can figure out my autoimmune issues.

I am not feeling any better, but could have kissed the ground she walks on.

Finally, someone cares.

I have a call into my LLMD to see what he wants me to do. We had backed off and was doing the last leg of treatment.

I am afraid the surgery did kick the Lyme back into full force and want to prevent what ever we can.

His office is very slow to respond and will be probably about a week before I know anything from him.

On top of that I think I am trying to pass a kidney stone. I hope it is the residual from the parathyroid being whacked out.

Pain and pattern seems familiar from past stones. Feel beat up and on the couch.

My legs feel very full and wrong, but are not swollen at all. Such a strange feeling.

The only way I have power this illness is to volunteer at a higher level to fight Lyme disease. So I do, and it helps.

I want to use the energy I have doing something productive and this helps. I feel of some
use.

My family is past understanding the dynamics of this and I do my best to "fake it till I make it"
Boy, does that get old, as you all well know.

Posts: 620 | From Ks | Registered: Oct 2011 | IP: Logged |

joalo
Frequent Contributor (1K+ posts)
Member # 12752

posted

--------------------
Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006.

Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007 | IP: Logged |

OtterJ
LymeNet Contributor
Member # 30701

posted

Do you have growths on your parathyroids? It is your gut which will not absorb calcium or vitamin

D that is the problem. It is leaching from your bones and your parathyroids are going into

overdrive trying to give your body calcium by taking it from your bones. This is a very

inefficient way of getting calcium and most of it ends up in your urine and in your kidneys causing

stones. One way to stop the parathyroid from being overactive is to give you IV calcium and

Vitamin D. Your docs should try this and see what happens to your parathyroid hormone-- does it go

up or down?

I hope you are otherwise doing ok.

Posts: 482 | From Oregon | Registered: Feb 2011 | IP: Logged |

n.northernlights
LymeNet Contributor
Member # 17934

posted

they could have missed another bad gland. Lots of patients have another bad gland.

Posts: 366 | From Europe | Registered: Nov 2008 | IP: Logged |

cozynana
LymeNet Contributor
Member # 34270

posted

I had not thought of IV calcium and vitamin D. I had thought of another bad gland.

I will wait and bit and see what happens and if it does not get better that may have to be addressed.

Posts: 620 | From Ks | Registered: Oct 2011 | IP: Logged |

annxyzz
Frequent Contributor (1K+ posts)
Member # 20404

posted

saying a prayer for clarity as how to proceed and for some form of encouragement for improvement .

I understand dark days and I pray you will have some discernment and hope ! So many of us are baffled and often feel overwhelmed . I pray for your comfort !

--------------------
annxyzz

Posts: 1178 | From East Texas | Registered: May 2009 | IP: Logged |

nonna05
Frequent Contributor (1K+ posts)
Member # 33557

posted

what test shows paratyroid issues?/ I heard of 2.

not sure I got tested right

Posts: 2563 | From Denver,CO | Registered: Aug 2011 | IP: Logged |

tdtid
Frequent Contributor (1K+ posts)
Member # 10276

posted

I'm sorry you are going through this. It is a nightmare disease. But yes, it can finally end.

I've been in remission a couple of times and hoping that this time is the one that will stick. But when you get your life back, you will realize all this treatment is so worth it.

But yes, I thought it was going to take forever. I couldn't even get into my first remission until 5 1/2 years later and much of that was with aggressive IV. Everyone is different though, so could be shorter. Surely not here to discourage.

Good luck.

--------------------
"To Dream The Impossible Dream" Man of La Mancha

Posts: 2638 | From New Hampshire | Registered: Oct 2006 | IP: Logged |

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