posted
Hi, i've not posted on here for a long time, still getting all the neuro lyme symptoms but all tests neg. I've had lumbar puncture & mri for ms but they were also clear.
I've been seeing a rheumatologist as I am now getting alot of joint problems and she thinks I could have Behcet's syndrome, ana neg lupus or UCTD & ran more tests. Just had my recent bloods back and I have a severe vit d deficiency, low phosphate & high parathyroid.
Anyone here had any experience of high parathyroid along with lyme? Although all my lyme tests are neg I still can't quite get it from my head that this could still be lyme. Getting lyme treatment with neg results in the uk is more or less impossible.
I have another appointment on Monday, just wondered if anyone had any parathyroid info for me.
Clare x
Posts: 69 | From UK | Registered: Jun 2009
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posted
Sorry, forgot to say, Calcium was normal (2.27) I think uk ranges a different from US. I have read up on parathyroid and it seems to usually cause high calcium, my local gp was confused with this and this is why I have to see the rheumy on Monday.
Posts: 69 | From UK | Registered: Jun 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Clare I was convinced before I found Lyme it was parathyroid causeing my illness. I always ran in the 9. range. Which is high normal here in the US.
I don't know how yours runs.
Have you tested with Igenex? By my symptoms I had the dern tests ran 3 times over the course of 2 years for parathyroid.
As my lyme test was neg.... I challenged the test to get the most bang for my money. It can be
done with shipping by Fed. Ex. getting it there within 3 days. You can call and ask them. Which may work for you.
-------------------- 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
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IckyTicky
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Member # 21466
posted
I have a small parathyroid tumor... my calcium has been in the high 9s to high 10s for two years now.
I'm suppose to see a specialist in California who specializes in parathyroid tumors but haven't had the money to go to him yet.
I don't know if the parathyroid tumor is a result from Lyme or co-infections attacking it or what.
I have late stage neuro. Lyme for past 22 years undiagnosed at least, RMSF, Mycoplasma, probably Bartonella, and I have viruses.
Other than the calcium... I don't know what other tests are for parathyroid. What IS high parathyroid, when calcium is low? What is the test called? Thanks
-------------------- 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
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Pinelady
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posted
Most docs will not even consider parathyroid unless it is over 10US. Calcium is highly regulated by the
body. Very tight. I now think because of my low D levels, the calcium level was a direct result of
the body trying to maintain at all cost in the presence of Lyme.
-------------------- 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
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Vit D - flagged LOW at 11 (normal range 20-100) PTH (parathyroid Hormone) flagged HIGH at 111.00 (normal range 12.00-65.00) Calcium- normal
I have been told that the REASON my PTH is so high, is a direct result of my vit D being so low.
I did not do well on the 50,000 IU prescription vit-D, so I now take OTC Carlson brand vit D - but am still having difficulty getting the vit-D to rise to an appropriate level.
Doctor said that if it was a "true" parathyroid problem, that my calcium would also be out of range HIGH, which it is not.
That is his basis for saying the high parathyroid is coming from the low vit D.
As a side note- I was also just recently diagnosed with a pituitary gland (brain) tumor that was not there a year ago. Also have several thyroid nodules recently.
I am only 52 years old.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
Please go to Parathyroid.com and look at all the info there re: high calcium and normal PTH. This site is by the #1 dr in the nation who does minimal surgery for parathyroid and why it needs to be addressed and not just watched.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Pinelady
Frequent Contributor (5K+ posts)
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posted
The body will rob the bones to get the necessary Calcium even if there is no D to work with.
If it has to it will continue to pump more and more, parathyroid(I believe by expanding) in order to maintain the calcium level which is critical for all body functions.
Unfortunately the borrelia also use calcium to make biofilm. Both problems need addressed, but I am not convinced high dose D is the answer.
Nor do I think surgery is the answer in the presence of Lyme. I would like to know peoples levels after they have got their lives back.
I think because it is such a tight function low and slow with the D may be a better option. Or you could set off a calcium crisis. Which looks like herx like symptoms.
-------------------- 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
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posted
Thanks for the input, i've had a good look at parathyroid.com and they seem to recommend surgery even if calcium is normal. I am seeing rheumy tomorrow & will see what they recommend. I think I will ask for a bone scan, at least i will know if it is effecting my bone density. Corine, sorry you've also got other problems, hope you get some good treatment soon.
I have also found that chronic kidney failure can affect parathyroid levels. Looks like im in for more tests & more nhs waiting lists! At least we have got the nhs i suppose. I'll let you know how i get on. Clare x
Posts: 69 | From UK | Registered: Jun 2009
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Pinelady
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I would not want anyone doing surgery on any gland of mine in the presence of Lyme. Unless they know it is malignant.
-------------------- 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
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posted
I will definately avoid surgery unless it is totally necessary. I had a lumbar puncture in Dec to 'rule out' MS and had a dreadful time. Very painful, headache from hell plus they hit the sciatic nerve & I still have sciatic pain now. Last time I'm talked into something I really don't want to do.
Posts: 69 | From UK | Registered: Jun 2009
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lpkayak
Honored Contributor (10K+ posts)
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posted
i've had over 10 surgeries with no problem
my spinal tap was the worst thing i ever went thru in my life---worse than givng birth w/o meds
well-maybe the two knee replacemnts at once were worse at times
thank you for this thread ad the link to parathyroid.com
i have beentrying to find others with this problem. my parathyroid and calcium test normal(i don't know how close thos-don't have ref )
but an abdominal ct scan showed abnormal pelvis bone that was questionale pagets ..
is pagets the same as "Behcet's syndrome"?
i ppreciate the link cuz primary says if blood tests are normal don't do anythig else but it bugs me something can show up so wrong: the pelvis bone and they just want to ignor it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I was freaked out over an "accidental" discovery of a PTH of 218. My neurologist did a ton of labs on me and that's when we found out it was WAY out of whack -------- it should be between 10-65.
My blood calcium wasn't on the high side, as it should have been with such a high PTH, so she we did some more tests.
A bone mineral density test showed progressing bone loss and I was severely deficient in Vit.D-3.
I was sent to an endocrinologist after I had 2 more high PTH levels and a pretty normal blood calcium.
The endo put me on 50,000 IU's of Vit.D-3, which I took once a week for 8 weeks. I repeated the PTH and it had dropped to 108.
Now, I take 2000 IU's of Vit.D-3 everyday, along with 500mg of chewable calcium. He said it may take a long time to get my PTH back into the normal range because it takes a long time to get to the high range it was at.
By the way, I also had a parathyroid ultrasound and a CT with contrast to check for anything BEFORE we tried the 8 week high dose trial of Vit.D-3.
I think we're on the right track to hopefully correct the hyperparathyroidism. Time (and Vit.D-3) will tell.
That's my experience with the PTH so far........
Keep us posted on what you find out and good luck!
Take care, terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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I had a good appointment today with Rheumy, kidney tests ok so thats one less thing to worry about. As my vit d is severely low & calcium is low/normal she has given me calcium & vit d tablets & will review these & parathyroid levels in 1 month. Also she has requested a bone density scan but this could take 6-8 weeks to get an appointment. I already take Colchicine and she has added Planquinil. I have read quite a few positive things about Planquinil so I am hoping I tolerate it ok. She did mention the steroid jabs again but Im still refusing these at the moment. I'll let you know how I get on. Take care Clare
Posts: 69 | From UK | Registered: Jun 2009
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IckyTicky
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Member # 21466
posted
In my case, I had a sestamibi scan done and it did show a small parathyroid tumor. Dr. L is a specialist in California (I want to see him other than the one in Florida because Dr. L actually responded in person to my enquiries and told me what tests to have done etc)
I can't help but wonder if some of my symptoms will go away once I get the tumor removed.
-------------------- 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
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