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» LymeNet Flash » Questions and Discussion » Medical Questions » Pity Party

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Author Topic: Pity Party
cozynana
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I just had a bomb shell dropped on me. I got my blood work done and was OK with the thyroid, creatinine, BUN, and EFGR not being in reference.

But, I was not prepared with the PTH still being high. 65 is the top of the reference and mine is still 85.

I called my endo surgeon to get the numbers and the receptionist told me the results. The
receptionist must have missed this lab because she seemed surprised.

I asked the receptionist to review this with the surgeon. Hopefully I will get a call back tomorrow.

I am hoping I am wrong, thinking I will have to have either both or one surgically parathyroids left removed.

The surgeon had split one and made it into two attaching a half so I could have two, the other three were removed.

I am about 3 months out from the surgery. I wondered why my short lived feeling better is now diminishing and I have had 4 days that have not been good again.

I was in denial and thought I had a touch of flu.

I have the buzzing back, noises hurt my ears again, my fatigue is worse again, [email protected]#$ I don't want to do this again.

My hormones are crazy again. It is not fair. I feel so beat up. I have tried hormones and don't do well on them.

I do 2-24 hour urine tests two days apart starting Fri. This was previously set by my Uro. at an earlier appointment.

I am worried about the calcium being leached from my bones and the calcium because I have a history of kidney stones I am passing a lot of white powdery stuff in my urine.

I wonder how much more my poor little body can take. Along with all the other issues I feel like laying on the couch and not getting up ever again.

I am usually pretty upbeat since I started the Lyme protocol last May. For some reason this is really hitting me hard.

Its my party and I can cry if I want to. Exactly how I feel tonight. [Frown]

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Lymetoo
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Yes, you are entitled to a good cry!! This is so AWFUL!!! What happens if they have to remove all of them?

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

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OtterJ
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Have you had serum calcium checked versus urine levels of calcium? I know that if your intestines
are damaged you can't properly absorb Vitamin D

along with other important things. Calcium is then leached from your bones and you get high

excretory levels of calcium but your blood levels are low. Your PTH goes up trying to get the

calcium out of your bones. I think the ALK phos. is also elevated trying to get the calcium out of

your bones.
Could this be a gut issue of lyme inflammation and malabsorbtion?
I'm sorry you are feeling so lousy.

Thyroid is also involved in this picture. Could you possible take synthetic thyroid to help keep things in balance?

I found a lot of my kidney problems were due to Bartonella. I hope you have thought about looking in other areas. I'm sure you have.

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cozynana
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I think if all of them are all removed I will be on hormones the rest of my life.

I am hoping I am wrong and the surgeon or uro can offer me something else.

I need to remind myself to not get excited until I know what I am really up against and what the options are.

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cozynana
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Otter, Thanks for you insight. It could be a gut issue of lyme inflammation and malabsorbtion.

I missed stating my vitamin D is low and have started vitamin D3.

I do have bowel issues in the transverse/descending colon area. I have tons of mucus.

I will ask if I have had serum and urine levels of calcium checked.

I need to find someone who really know thyroid hormones. I have tried them before and not really done much for me.

I will ask my LLMD if he wants to do them or if he has someone he can refer me too.

Also, my uro has a partner that does hormones. Just wish I knew the right person to go to.

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OtterJ
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I know you are in Kansas but you can ask here for a lyme literate endocrinologist. If you have absorption problems, taking oral Vitamin D3 won't

do it, you will have to have IV vitamin d3 to get that into you.As a pituitary patient, not all docs are created equal. Don't even go to the

endocrinologist who treats diabetics-- their problem is in their pancreas. You need a pituitary endocrinologist and someone who will

not look at you cross-eyed if you say the "L" word. If you find someone here on the boards, maybe they can consult with another doctor, so if

this new doc is in California or wherever, they can call the new not so lyme literate doc in Kansas and share info so you won't have to travel out of state.

Many people with Celiac disease have the problem you have because they cannot absorb vitamin d.
This is critical. When you have elevated

Parathyroid hormone and high calcium secreted, you have a tumor on your parathyoid. If you haven't ever, you have the problem with Vitamin D

absorption. Your body isn't getting any calcium despite what is being excreted. You need to get on top of this even thought you feel like heck.
Do you have any rheumatoid markers?

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Lymetoo
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Cozy.. are you gluten free?

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

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Razzle
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Need Vitamin K2...

And Vitamin D3 can also be absorbed through the skin (our body has a natural mechanism for this, since we can get Vit. D from the sun).

It works for me, because if I take too much oral Vit. D, I cannot sleep at all. Same thing happens if I put too much Vit. D on my skin.

Must be oil-based Vit. D3 liquid, otherwise topical won't work.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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cozynana
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I have not had my rheumatoid markers checked yet. My GP talked about this in my last appointment.

Yes, I am celiac and have eaten a very strict gluten free diet since 2000. If I don't I get soooo sick.

I used to be able to eat the other grains, but now I can't eat any of them.

I will see if I can find a pituitary endo. The endo I am seeing right now is clueless and useless.

I am going to ask my uro to see if see can find me one that is more tailored to me....like a pituitary endo.

My Uro. knows I have Lyme and is very good to understand my needs and knows my LLMD.

She also uses herbs along with drugs in her practice.

I have a phone appointment with her Fri. Glad it is so soon.

I have oil based vitamin D3. I will try putting it on my skin.

Razzle, Why do you say I need vitamin K? I am here to learn so would appreciate your input.

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Keebler
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-
not just K, K2.
-

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Keebler
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-
Vitamin K2 prevents and ameliorates abnormal calcium deposition (skin and arteries). It also reallocates it to bone and teeth. K2 also improves the elasticity of arteries and veins (vascular system) and the skin.


http://chriskresser.com/vitamin-k2-the-missing-nutrient

Vitamin K2, The Missing Nutrient


http://www.livestrong.com/article/261332-list-of-vitamin-k-levels-in-foods/

Vitamin Levels of Foods with Vitamin K2

Excerpt:

. . .

Vegetables

Kale, collard greens, mustard greens, spinach, Brussels sprouts, parsley, watercress, asparagus and endive contain 90 mcg or more of vitamin K per 1-cup serving. Other foods that have high vitamin K content -- 60 to 90 mcg -- include cabbage, okra, leaf lettuce and stewed plums.

Romaine lettuce, cabbage, green peas, edamame or cooked soybeans contain 30 to 60 mcg of vitamin K per cup.

Foods that contain 10 to 30 mcg of vitamin K include tomato paste, red cabbage, artichokes, cauliflower, carrots, yellow snap beans, peeled cucumbers, iceberg lettuce and fresh tomatoes.

Vegetable and soybean oils contain high levels of vitamin K. Mixed vegetable oil has 164 mcg, and soybean oil contains 197 mcg of vitamin K. . . .
-

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Lymetoo
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cozy.. and dairy free? soy free?? GMO free?? sugar free?? Just looking for help with your gut issues.

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

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cozynana
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Keebler thanks for the info. I was amazed how many of the veggies I already eat. It is almost like my body knew I needed them. I eat cabbage, asparagus, lettuce, cauliflower, carrots, some frozen green peas and cukes all the time.

Lymetoo, I am soy,gluten and sugar free. I do eat plain greek yogurt. Only dairy I do.

I appreciate the input. The support here is incredible.

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Keebler
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-
Be sure to avoid any yogurt that has added powdered milk, as that can be dangerous for our blood vessels due to oxidation created during processing & heating it as it dries.

To cut costs and time, it's often added to non-fat yogurts and some "Greek" yogurts to make them thick. A real good one does not need the powdered milk as a trick.

It's better to avoid the non-fat versions, anyway, as they just turn to sugar in the body without some of the fat. Organic is best.
-

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cozynana
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Keebler, thanks for the tip. Will it be in the ingredients if it is in the yogurt?

Mine is nothing but milk and the live active probiotics (can't think of the right word).

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Lymetoo
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I'm very sensitive to dairy and that includes yogurt. Leave it out for a few days and see if it helps.

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

Posts: 95350 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
cozynana
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Lymetoo, I ran out of yogurt so am going to try to go without it and see how I get along.

I have such a limited diet I hate to give it up, but it helps, I will.

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Lymetoo
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I know.. I'm nearly starving over here!! [lol]

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

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