LymeNet Flash: anyone else have trouble with parathyroids? or paget's disease

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»	LymeNet Flash » Questions and Discussion » Medical Questions » anyone else have trouble with parathyroids? or paget's disease

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Topic: anyone else have trouble with parathyroids? or paget's disease

lpkayak
Honored Contributor (10K+ posts)
Member # 5230

posted

my pelvis was not fractured and no arthritis or osteoporasis...so the pain is from bart or lyme or pulled(maybe torn)ligaments/tendons

so far i am resting...improving.

but the xray did show a problem called pagets in my pubic bone and i have no pain there

they are testing blood and then i will know next step-it might be meds(scarey) and might be surgery(easy)

but i don't like any of it. also i may need a total bone cscan to see where else it is.

it can cause pain, insomnia, cog stuff, so maybe tx will help some of my sx

anyway-anyone else out there dealignwith it?

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Wow. Sorry to hear about the Paget's .. but glad to hear you didn't break your pelvis!!

Keep us posted, OK??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96227 | From Texas | Registered: Feb 2001 | IP: Logged |

lpkayak
Honored Contributor (10K+ posts)
Member # 5230

posted

i did a search on here...it has never been talked about???

so i'm the 1st lymie to get this dx???

thats hard to believe-it has to do with bone pain, insomnia and cognitive and neuro problems...

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004 | IP: Logged |

IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466

posted

I'm not sure what pagets is... but I do have parathyroid issues. Hyperparathyroid. My calcium levels are too high (and coincidentally, so are my 16 yr old's who also has Lyme and coinfections)

I'm suppose to have surgery to remove the begnign parathyroid tumor and that is suppose to immediately drop my calcium back to normal.

The specialist I've spoken to says anything over 10 is not normal. My calcium level is usually around 10.5 but this last months' was 11. It's been high for over a year now. Guess I need to get that small tumor removed already.

What are your calcium levels? I had a bone density scan and it shows I'm right on the border of osteopina.

--------------------
IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND
IGG: 31+, 39IND, 41+
Also positive for Mycoplasma Pneumoniae and RMSF.
Whole family of 5 dx with Lyme.

Posts: 1014 | From Texas | Registered: Jul 2009 | IP: Logged |

lpkayak
Honored Contributor (10K+ posts)
Member # 5230

posted

i'm waiting for the blood redults. but if i were you i would not put it off. your numbers seem really low-how did they find it? does your bone show changes somewhere? the surg is outpatient and only takes 20 min i read. if you don't do it you can end up with osteoporosis or kidney stones and other stuff

i am open to the surgery but don't like th idea of the meds they might want to give me (fosamex is one)

a few years ago my osteoporosis test was fine

i have been takein g exra D recetnly to prevent flu and a month or so ago i ran out of calcium and need to get it. i'm supposed to take 1800 a day per gyn doc-don't know if that is related or if i should change what i take

i'll get results in a few days

i'm surprised no one else is dealing with this

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004 | IP: Logged |

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

posted

My mom didn't have lyme but she did have Paget's disease. By the end of her life she had become very bow-legged and she had a lot of pain in her knees.

I've never heard of surgery for Paget's. Please let us know what happens and how you are doing. [group hug]

My mom's insurance wouldn't pay for fosamax [Frown]

so she was just taking calcium pills and doing a few weight bearing exercises.

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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 |

Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

posted

I would have sworn to my Endo I had parathyroid

problem. Had it checked twice. He said no twice. It

was Lyme messing with me. That was before I found

low vitamin D at total 11. Replacement sent me

severe neuro so be careful.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008 | IP: Logged |

lpkayak
Honored Contributor (10K+ posts)
Member # 5230

posted

hmmm...i got a call that blood work was ok (calcium level, D, and something else specific to pagets)

but i don't understand.

the catscan saw the problem. one bone is messed up.

if you don't fix this you can get real sick and die. kidney stones . lots of bone problems. heart.

so i have a question in to doc. no one looked at the size of my parathyroids.

i was on a chat about it once and someone said their first endo was letting it go but second wanted to do aggressive tx

i'm going to keep reading up on this

pine lady -when you said " He said no twice. It

was Lyme messing with me." was it doc or you that said lyme was messing with you?

i have read that bart can mess up the bones like Bb messes up the cartilage

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004 | IP: Logged |

Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

posted

Borrelia is commonly found in bone marrow in

animals. I do think they suck the life out of

them. Low vitamin D. I know they hurt like heck.

It is not easy to understand how vitamin D and

Calcium work together, but I trust my endo. I had

calcium levels of 9.5 and extremely low D so that

was what I was guessing,

I thought I had parathyroid problem, and it was stealing from my bones to compensate. blood

calcium levels will try to be maintained by the body at all costs. When in fact we have more than

one major cause for low D and it is not simple fix of give D and all is well. If the cells are

not working right it could be harmful. As was in my case sent me severe neuro.

I'm sick, my doc says

nothing is wrong with me, so I asked my endo -will you find out if

its hormones. Twice he said no it is not. There

was some malabsorbtion of the synthroid, but it

was not parathyroid related. I do think the

addition of the E and Melatonin I am currently

taking will help in the metabolism of both. I am

now at 8oo of E and it is doing something, but I don't know what.

[ 11-04-2009, 07:26 AM: Message edited by: Pinelady ]

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008 | IP: Logged |

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