Cpnhelp.org

Hi Rica,

Your posting is also timely for me as I have been delaying getting a bone density test done but know I need to.

Personally, I would run from the 1X/month as it has not been on the market very long (has it? just look what happened with Fosomax....) Magnesium, Vit D as well as calcium help to rebuild bone loss.  But then I am not one for prescription drugs for the most part.

A friend'(s from a yahoo group I belong to) mother has severe osteoporosis and her doctor recommended

 "Beyond Bone Defense"|  Source here/

Just an alternative view/source for what its worth!

 JeanneRoz

 

 

 

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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

Rica,  I'm experiencing bone loss and hyperostosis at the same time.  Dr. X thinks I'm genetically inclined to have my bones send overly generous amounts of calcium to inflammationi sites.  I've seen an endocrinologist about it who ruled out hyperparathyroidism through testing and determined that I'm shedding a lot of calcium in my urine too.  She prescribed Amiloride which prevents urinary calcium excretion and preserves potassium.  I think it's making me retain water and giving me low grade headaches.  I'd like to get off of it for those reasons but even moreso because I hate to think how high my blood calcium might be since I've been taking it.  Dr. X has ordered new blood tests to check out my electrolytes (waiting now for results).  So my vague opinion is that Amiloride is probably not the best option.  My hope is that as the bugs are reduced the inflammation will be reduced too, and my bones won't be giving up so much calcium.  The hyperostosis made me avoid D for more than a year, but I started taking it again a few months ago; I'm up to 4000 iu now.

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

I am loosing bone, too. I started taking B12 in the form of ProBone-O drops.

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

Hi Rica, I would recommend in addition to the D, calcium and magnesium--boron. Take more magnesium than calcium. I know you get lots of calcium in your diet. Might want to look into Iodoral. Every organ in the body needs it. I would imagine so do our bones. Also get some vitamin K2. My 99 yr old aunt takes it and she stands tall and straight. So here it is: D, calcium, magnesium, boron and K2. Good luck, Raven

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Feeling 98% well and going for 100! Still testing + for Cpni since June '08.CAPi since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi. Also EBVi and HHV6 NACi, Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi and Methylation supplementsi

When you ask if CPni contributes to bone loss my thoughts are that since cortisone does, increase in cortisol would too!   

We know from "The Potbelly Syndrome" that infection causes an increase in cortisol which weakens the immunei system and would also contribute to the hormonal effect of bone loss.  

Although I was on steroids and other known bone thinning drugs, I was able to increase bone density for several years without taking any rx and only supplementsi, until I got my Vit D level down to 8 (on purpose with previous protocol which I now regret) and at that time my bone density testing showed I lost ALL progress made of bone density recovered over the past 5 yrs. 

I'm anxious for my next bone density test.  

I was told to supplement with at least 1500 mg of calcium/day in addition to diet and the other bone building supplementsi.  I've recently reduced my calcium intake a little due to adding calcium pyruvate which is also a source of calcium.  I vary the types of calcium I take but try to steer clear of the less absorbable ones like calcium carbonate or oyster shells.    

So in summary I would suspect that bone density issues will resolve as we heal with CAPi too.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

Rica - 

This is a tough one.  I personally have not been a fan of any of this class of drugs since first reviewing Fosamax.    The unknowns from this class of drugs seem staggering to me.

On the other hand osteoporosis, breaks, compressions etc... are serious business too.

I don't know what type or if you elected chemo but it's osteopenic effects are well known... and could be playing a big factor in your 2 year change...

Perhaps consider checking your vitamin Di level, using the supplementsi Raven so correctly identified, consider learning about Iodoral if you haven't already , evaluate where you stand on weight bearing exercise (I know you exercise but how much involves lifting weights - awesome bone builder) and set a time limit to do these until you get another bone scan and then evaluate where you go from there...

 

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

And how's your kidney? remember the kidney facilitates the conversion of sun to vitamin Di; vitamin D is needed for calcium ABSORTION; so it's not only to take lots of calcium, is to be able to assimilate it.

So, why don't you look for other forms that are not of the same family as that Fosamax, - villain that hurt you?? - ask the Doctor if HE OR SHE will personally take it after suffering such consequences you alredy suffered!? I would not go deeper wondering if it gets worse or not! Sorry, I'm a little more radical! Avoid obvious risks!

Again - I'm not a Doctor- but for sure the problem is a consequence of the CPNi!!! We blame the bug!

Hope you can figure it out!!

God bless!

Maria.

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God bless you all.

MariaPatri - living in a rollercoaster! (In Orlando, Fl).

Thyroiditis, sinus infection, heart, muscles and joints. 

Hi Rica,
Sorry to hear about your osteoporosis.

Here is a little different approach to it:

http://www.4.waisays.com/ExcessiveCalcium.htm

http://jcem.endojournals.org/cgi/content/full/90/3/1897

Hope you will beat it the way you dealt with Cpni.

Best wishes

Barbara

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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. EDSSi 0 for over 5 years.

Thanks for the links

http://www.4.waisays.com/ExcessiveCalcium.htm 

http://www.4.waisays.com/summary.htm

http://jcem.endojournals.org/cgi/content/full/90/3/1897

I am always looking for options in osteoloss prevention for myself.

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Hi Rica, Thank you so much for asking this question.  You have responses from several differing perspectives which is so useful in sorting out YOUR decision as to what YOU want to do with YOUR body.   This website is simply the BEST.   I am so beginning to love the conflicting feedback, because most things are very big pictures, and often one individual sees only one perspective.  

Good reading and info to help with your decision which ever way you go. 

Blessings and thank you for all the help you have been to me personally.

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM