My Doctors arrrrrg!

[Rockin Annie]

[user=31]Lynne G./SD[/user] wrote:

Hi Annie;
      Your calcium,weight etc problems sound just like mine were.I was on MTX and was near liver failure.I was on Fosomax  because the doc told me to because the MTX does a number on your bones.Year later I found my fantastic doctor in Ottawa who got me sorted out and nearly drove me nuts in the process.My blood calcium was super high as it was being leached out of my bones to protect the heart.I was a total mineral mess,sos much so that it scared the doctor.I went from slightly anemic to near hemachromatosis level in less than a year.Barium,lead,calcium,copper,iron,manganese,potassium,silicon,sodium and strontium were all sky high.Boron,chromium,molybdenum,phosphorus,selenium,and zinc were almost non existant.Vitam D 25to 1,25 had a ratio of 2.8 when it should have been somewhere around 1.1.All this was caused by malabsorbtion of food nutrients due to my unknown celiac that ended up causing leaky gutand total systemic yeast infection
     Try to find a good holistic doctor who can get you tested for all these problems that are the likely cause of your disease.      Lynne

Hi Lynne, thats does sound like me, I think over the years of exercise, dieting and trying to look good, because of my work (fitness instructor) has finally taken its toll on my body.

Its all a bit over my head but I am trying to understand it more, I have been to numerous naturapaths when first Dx with RA looking for a miracle cure, but never actually been tested for my problems, just given a heap of supplements. I think now that I am sort of on the right road and know what questions to ask, I will look into finding a good holistic doc that will help, especially now that I am getting my blood results sent to me instead of having to go to the doc everytime I wanted to know my results, like you say something must be causing my high calcium levels……….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[lynnie_sydney]

Annie – Lynne G offers you some very sane advice. Dr K may well be the one for this. If not, you also know that there is Dr D not so far from her and she absolutely will work on your gut/calcium absorption issues in conjunction with the naturopath. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Rockin Annie]

[user=30]lynnie_sydney[/user] wrote:

Annie – Lynne G offers you some very sane advice. Dr K may well be the one for this. If not, you also know that there is Dr D not so far from her and she absolutely will work on your gut/calcium absorption issues in conjunction with the naturopath. Lynnie 

Lynnie, you know I was thinking about the same thing, and was going to go over the PM.s you had sent me previously but have been busy with my grandson, so haven't got there yet. After ringing Dr K's surgery today, they are so helpful and so nice to talk to, thanks for recommending them to me in the first place,  I do think it might be an idea to fly to Melbourne to have IV's and to see Dr D if I need to. I don't think I can get the help I need here in Cairns and I can always make it a a holiday :blush:, there is such a great dance scene down there……..Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Kim]

[user=807]Rockin Annie[/user] wrote:

Hi Kim,

It is hard work trying to reply when you have a 2 year old (grandson) running around wanting my attention.

I agree my Rhemy is a jerk! I was so disappointed with his letter.

That is really scarey stuff, can I ask what you take for your Osteo?

Thank………Annie

Aren't grandchildren the best!  I just spent two weeks with mine.:)

The others have already answered your question about the Osteo better than I could.  I'm operating under the premise that once I get my body working at an optimal level, the calcium will be getting to my bones.  Sounds like you already do to, but I eat good, healthy food……lots of dark leafy greens, tons of broccoli, raw fruits (not juice).  The only dairy I eat is a small amount of cheese (don't think I could live without it) and yogurt (I'm hooked on the Greek yogurt). I eat very little meat, and get most of my protein from beans and legumes.  I haven't been tested for Celiac, but plan to.  In the past, I've tried a gluten-free diet and couldn't notice any difference, but I may not have done it long enough to tell, and was not 100% compliant. 

I believe your body can get all the nutrition it needs from good food and am not big on supplements, but my new Lyme doctor has me loading up on lots of stuff now.  At this point, I'm doing everything he says and seem to be taking pills all day long.:(  It seems to me that as long as you keep supplementing then your body is not called upon to produce what it needs.  I also question what all the supplements do to your gut, but for now am following his program.

Sounds like there are enough stubborn doctors to span the globe….ugh!:headbang:  Hang in there.

[Rockin Annie]

Thanks Kim,

You and the others have given me great advice which I really really appreciate, I will follow it all up, I feel more positive now, I knew something must have been going on for my calcium levels to be high, but didn't worry to much as the doctors didn't seemed concerned only to give me more meds :angry:…………Annie

P.S. Yes grandchildren are very precious, but it was nice when his mum arrived, I was totally exhausted :blush:

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[lynnie_sydney]

I believe your body can get all the nutrition it needs from good food

Kim/Annie – the issue with this is: even with “good” (natural and/or organic) versus packaged food, which foods are good for which person? We are not all the same. Those of us with chronic diseases normally have something else going on too (as Annie absolutely does). That is why certain foods need to be added/avoided and specific supplements may be indicated. However, they need to be the ones our specific bodies can benefit from, not just a scatter gun approach. Glad we are on the same page, Annie, about Dr K and possibly Dr D if you need more gut specific focus. She is on the Mornington Peninsula and that is absolutely glorious. Lynnie  

 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Rockin Annie]

[user=30]lynnie_sydney[/user] wrote:

I believe your body can get all the nutrition it needs from good food

That is why certain foods need to be added/avoided and specific supplements may be indicated. However, they need to be the ones our specific bodies can benefit from, not just a scatter gun approach. Glad we are on the same page, Annie, about Dr K and possibly Dr D if you need more gut specific focus. She is on the Mornington Peninsula and that is absolutely glorious. Lynnie  

Hi Lynnie, Something is definately going on with me, and I love that “scatter gun approach” saying,  which is what I am doing at the mo with all the supps I am taking.

I have just read over your personal history again, it makes a little more sense to me this time, and realise you went to see Dr D not Dr K, silly me,  😕 so I will see what Dr K recommends when I fly down to see him, as I have made up my mind to go now. Your notes made me realise it is not an overnight fix and I am prepared to do whatever it takes to heal myself………..Thanks for your help…………. Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[A Friend]

[user=807]Rockin Annie[/user] wrote:

Question for everyone……… My Rheumy took me off Fosamax, I don't know why, does anyone take this as well as their abx, and if so was there any problems?.

Thanks in advance for any advice……………….Annie

 

Thought I'd failed to click “Send” and lost it, and re-did it in a 2nd post…. wonder if I contradicted myself….lol AF

Annie,

I've heard for a number of years that the new bone that resulted from taking Fosamax was not good bone, but brittle; also, heard of other problems for people taking it. 

This is a link and an excerpt from it — which may be the reason why you were taken off of it.  There's more about this on the link below:

http://yourhealth.goodshepherdhealth.org/healthnews/healthday/080428HD614962.htm
 
“And a second study found that Fosamax, used to prevent fractures in women with osteoporosis, may be associated with a higher risk of atrial fibrillation, a type of abnormal heart rhythm.

Both studies were published in the April 28 issue of the Archives of Internal Medicine.”

AF

[A Friend]

[user=807]Rockin Annie[/user] wrote:

Question for everyone……… My Rheumy took me off Fosamax, I don't know why, does anyone take this as well as their abx, and if so was there any problems?.

Thanks in advance for any advice……………….Annie

 

Annie,

I've heard things about Fosamax for many years saying that the bone it builds is not good solid bone, but brittle bone. 

There was also an announcement earlier this year about some problems with it and some other drugs.  Here is a link and a brief excerpt about it.  There is more if you go to the link:

http://yourhealth.goodshepherdhealth.org/healthnews/healthday/080428HD614962.htm 

“And a second study found that Fosamax, used to prevent fractures in women with osteoporosis, may be associated with a higher risk of atrial fibrillation, a type of abnormal heart rhythm.

“Both studies were published in the April 28 issue of the Archives of Internal Medicine.” [end of excerpt]

With the atrial fibrillation, am wondering if they may have been very magnesium deficient…. as described in the Discussion Topic links I just posted this afternoon. 

AF

 

[Rockin Annie]

Hi AF,

I still can't believe I let myself be put on all these drugs. When I look back when Fosamax was suggested it took long discussions with fellow workers and Drs before I would agree (I didn't even know how to use a computer back then), and its only in the last year that I have started to learn.

I have read the links you posted and your thread about magnesium, its all very confusing but at least now I am aware of the side effects and definately won't be taking Fosamax again, instead I will be trying to find an experienced nathropath here or wait until I visit Dr K and go from there.

Thank you and everyone else for your replies, I do hope you all realise just how much your messages and advice means, no matter how short or how long, help motivate, keep us sane and keep us going on the right road back……………..Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[lynnie_sydney]

Annie – I have just been to a gluten-free and allergy expo in Sydney today. I picked up some info from an outfit called ImuPro100Plus. Their comprehensive food intolerance tests have been available in Germany since 2000 and they are now in many countries, the latest being Australia and New Zealand – the tests are still sent to Germany. Totally specialising in IgG food intolerance tests – all foods done on an individual basis (not in groups). It might just be worth you taking a look. Their Australian website is: http://www.imupro.com.au. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Rockin Annie]

Hi Lynnie,

How exciting and interesting, I would have loved to have gone. I had a quick look at the website, but will read it in depth when I get more time.

Dr K wants me to have a hair analysis done, which, is done in New Zealand, I got excited because I thought maybe this was something similar, but I don't think so, as it is a blood test and not hair. Its something to look at in the near future though, there is so many avenues to go down now, my hubby has put the raines on me and said to do one thing at a time as I am like a bull at a gate, I want everything done now, and I won't know what is working or not.   

Thanks for thinking of me :blush: ……………….Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[lynnie_sydney]

Annie, your husband makes very good sense. Patience and one step at a time. It also sounds like Dr K is pretty on the ball. You can always keep some things on file to use – if and when necessary – down the track. You can also talk to Dr K about some of those, maybe even the testing for Type 111 intolerances. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[A Friend]

[user=807]Rockin Annie[/user] wrote:

…….Dr K wants me to have a hair analysis done, which, is done in New Zealand, I got excited because I thought maybe this was something similar, but I don't think so, as it is a blood test and not hair. Its something to look at in the near future though…

Annie,

Just want to share with you what I've learned about blood tests for magnesium not being accurate.  The reason I'm sharing this much information with you is because of the seriousness about magnesium deficiency in our illnesses.  The following are some explanations, links, and excerpts from papers I've read explaining this: 

If the blood test is for measuring  magnesium, serum blood tests for this may not be accurate.  The research has been out on this for a long time, but doctors P. Cheney, S. Rogers, P. Braun, et al, have written that physicians keep ordering these tests in spite of these findings.  The reason these type tests are not accurate is because the body's pH venous system MUST stay at a very exact range… even if one has serious acidosis… in which case, the body will borrow/steal minerals away from other sources, especially our bones.  There are other kinds of  tests that can give accurate results. 

These links have been very helpful to me:

http://www.pbraunmd.org/magnesiu.htm 

[The above paper includes the work of Dr. P. Braun and Dr. S. Rogers.]

---

VERY IMPORTANT ARTICLE

http://www.prohealth.com//library/showArticle.cfm?libid=8812

[Dr. Paul Cheney in his CFIDS research tells about erroneous blood labs in excerpt below — this can also be true for those of us with rheumatic diagnoses. AF]

Paul Cheney, M.D.'s Oxygen Treatment for Chronic Fatigue Syndrome

Dr. Paul Cheney recently began prescribing oxygen for patients with alkaline venus blood. Up to an hour of oxygen in the morning can provide half a day of significant improvement and numerous benefits. He has been seeing alkaline blood results in patients for years, but dismissed it as insignificant, based on his medical school training. His growing suspicion that it was a very significant factor was confirmed when a speaker at an international conference on fatigue in London began a presentation by announcing “Ladies and gentlemen, I'm here to tell you that CFS patients are alkalotic.” Blood alkalosis inhibits the transport of oxygen to tissues and organs, constricts the blood vessels, and lowers overall circulating blood volume. The purative cause of the alkalosis is the glutathione deficiency that is pervasive in CFIDS. Low glutathione causes an elevation in citrate, which in turn lowers a substance (2.3 DPG) that controls the release of oxygen from the hemoglobin. Our blood could be full of oxygen, but without enough of this substance it cannot break free of the hemoglobin and get into the cells. This causes oxygen deprivation in the tissues (hypoxia), which makes the body switch over to anaerobic metabolism, and that produces tissue acidosis, which can be painful. The acidosis here is unusual because instead of generating a lot of carbon dioxide, it generates a lot of organic acids that stay inside the cell. The body compensates for tissue acidosis by increasing renal bicarbonate reabsorption, and developing tissue alkalosis. This blood alkalosis is unusual in that Cheney usually sees venus blood pH values over 7.4 and urine pH values under 6.0. (Optimum venus pH values are 7.30 to 7.35.) When both blood alkalosis and urine acidosis are seen, it's a metabolic problem – not a psychogenic reaction to a needle stick. A blood pH above 7.4 shows impairment, and above 7.5 there is significant impairment – almost no oxygen transport at all. A urine organic acid test will also reveal this problem: elevated citrate and/or low 2-oxo-glutatic are markers. The really terrible thing is the presence of a vicious cycle. The blood alkalosis further lowers the levels of 2.3 DPG (inhibiting the release of oxygen), causing tissue hypoxia, which causes tissue acidosis and pain, which then causes blood alkalosis, which lowers 2.3 DPG even further. And around and around we go. [End of excerpt from article…MORE…click on above link. AF]

---

http://en.wikipedia.org/wiki/Hypomagnesemia

[Understanding how it works….Suggest reading all of the above link. AF]

The kidneys regulate the serum magnesium. About 2400 mg of magnesium passes through the kidneys, of which 5% (120 mg) is excreted through urine. The loop of Henle is the major site for Mg-homeostasis and 60% is resorbed.

Magnesium homeostasis comprises three systems: kidney, small intestine, and bone. In the acute phase of magnesium deficiency there is an increase in absorption in the distal small intestine and tubular resorption in the kidneys. When this condition persists serum magnesium drops and is corrected with magnesium from bone tissue. The level of intracellular magnesium is controlled through the reservoir in bone tissue.

[Bold emphasis above by me. If the above hypo condition goes on for years, we can be in real trouble….I was — and probably still am, as it can take a long time to repair this kind of damage and return tissues to even near normal.-AF]

Hope these are helpful,

AF

[Rockin Annie]

Hi AF,

I have read all the links you have posted and also your thread on Magnesium deficiency, and find it all totally going over my head, I think it will take me years to comprehend what is being said 😯 !

I know something is leaching calcium from my bones, I guess years of good and bad diets. I need to get a good balance of supps and not just keep adding what I think I need in case I am doing more damage than good!.

Where did you start?, I have never heard of urine strips until now, should I be using them to check my PH? What are your thoughts on Magnesium tests and do you think I should add Magnesium before being tested?………..so many question for you but you have got me going on this now, I also was going to wait to check my next blood results before starting on calcium supps, maybe I should wait till I see Dr K………..its all so confusing, but the more I read the more it sort of makes more sense (hopefully)………………

Thanks for all the links, help and time you have given me………………..Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

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