calcium and flares

[SandiS]

I have been having painful flares off and on since early August. I had added nattokinase after being off it for a couple of months. When flares started, I stopped the nattokinase but the flares continue. The only other change I made was adding tums at night for reflux. This is has always been at least 2hours after I take minocin. Could the tums still be causing the problem? Thanks for any thoughts on this.

Sandi S

[Maz]

@SandiS wrote:

I have been having painful flares off and on since early August. I had added nattokinase after being off it for a couple of months. When flares started, I stopped the nattokinase but the flares continue. The only other change I made was adding tums at night for reflux. This is has always been at least 2hours after I take minocin. Could the tums still be causing the problem?

Hi Sandi,

Sorry to hear about your painful flares. Nattokinase is a bio-film buster, so the purpose of taking it usually is to break down the slimey matrix in which bugs hide out so they can be released and recognised by the immune system. This will cause some herxing when effective.

Also, if you get a chance to read the following link, there is mention about what feeds the bio-films…this includes calcium. So, in effect, according to what these physcian-researchers believe, the two supps are antagonistic when looking at it from the perspective of bio-films:

http://publichealthalert.org/Articles/marybudinger/biofilm.htm

“That raises the question of what supplements and nutrients may inadvertently feed the biofilm. “When trying to kill bugs, if you take calcium, you may not be making headway,” Usman said. “Calcium, iron, and magnesium block our efforts to dismantle the biofilm.”

One of the reasons why the tetracyclines are so effective for rheumatic disease is because they have powerful chelative properties. One NIH study (mentioned in the Scammell book) found that minocycline in animal studies caused T-cells to take up too much calcium, causing them to malfunction. Also, in MS, for instance, these patients tend to have iron deposition in the brain due to poor venous return to the heart and lungs. This is toxic to the brain and nervous system and minocycline has been shown to be neuroprotective in this way for MS…by binding to iron in the blood and tissues and chelating it. This is one reason why some folk find they get the blue-grey hyperpigmentation from minocycline, skin biopsies of which showed benign iron deposition under the skin (going by memory but think these studies were done in UK).

For reflux, have you thought of raising the head of your bed? Bed Bath and Beyond sells those bed wedges, I think, which you just place under the mattress. Also, some people find apple cider vinegar to be very helpful with reflux, either taken as is or with a little warm water.

Hope something above might help, Sandi!

PS Has reflux always been a problem for you or just when taking mino? What time of night are you taking mino? Are you leaving a good two hour window from your dose and bedtime? Ever been tested for/had helicobacter pylori?

[Rosemary Perth Aust.]

What on earth are you supposed to do when the treatment removes the vitamins and minerals especially the ones you mentioned Maz. Went without them when I first started so i could sort myself out on abx and went on a downhill slide. I really do not know what the answer is, it is all so complicated.

[SandiS]

Thanks for the quick response Maz. I thought at first it was just adding the nattokinase so I stopped it with the intentions of restarting less often once the pain leveled off. That hasn’t happened yet. I also stopped the tums (it’s been a week) and no difference yet. I have a history of h. pylori and have been using mastic gum to prevent a reoccurrence. I see Dr.B in North Carolina in November, so I’m sure he will help sort all this out. Obviously, there are still bugs that need to be hit. I agree Rosemary, how do you know whether to supplement or not with these minerals? What a road we are traveling. That being said, despite my current difficulities , I am still so much better than I was 3 years ago when I started minocin. I now have normal labs except for anti ccp which has gone from 189 to 86. and until this last episode no pain for about 9 months.

Thanks again
Sandi

[Rosemary Perth Aust.]

So sorry for butting in Sandi, I just find it all so daunting, still, even after all these years. I agree totally that most off us have been better off, I would be as bold as to say I was 300% better on what I was. I could not get off the bed, then 18 months before I could sit at the computer to find out about this supplement issue of keeping them separate. I feel so sad for those who do not have success. I just cannot go without my minerals, any of them for that matter, even the iron.
I will look up what you are taking for H/P as I had a pretty serious problem with it, although think I have it under control now. That is why I take the GSE. powder. You might be interested in looking up Siberian extra virgin pine nut oil. from Siberian Tiger Naturals. Found it whilst looking for something for Gastritis. There were so many articles from patients who swore by it ,for inflammed stomoch. They also mentioned Helicobactor which was interesting. It may even help absorbtion if it is as good as they say. Have not got it yet so do not know really. Should be here any day. Rather have something natural. Hope you sort it out soon.

[Maz]

@SandiS wrote:

I have a history of h. pylori and have been using mastic gum to prevent a reoccurrence. I see Dr.B in North Carolina in November, so I’m sure he will help sort all this out. Obviously, there are still bugs that need to be hit.

Hi Sandi,

Thanks for confirming the H.Pylori connection. Unfortunately, this infection has been tied with RA and longterm studies have been run using abx (clarithromycin aka Biaxin) for H.Pylori patients with RA with great success. However, being a spirochete – much like Lyme disease, syphilis and oral spirochetes – enjoying bio-films and also being quite pleomorphic (shape-shifting)…a targeted combination approach along with acid-reducers is likely the optimal way to go.

Here is Barry Marshall’s website (Aussie researcher who discovered H Pylori as a cause of stomach ulcers by infecting himself and proving this to a disbelieving medical community who still thought ulcers were caused by stress), outlining protocols used for H. Pylori…although, worth bearing in mind that these protocols aren’t designed specifically for rheumatic disease and just for acute infections…longer term txs would be applicable for RA induced by H. Pylori:

http://www.helico.com/treat_marshall.html

http://www.helico.com/treat_therapy.html

In other words, minocycline alone probably won’t hack it for this infection. 😥 I think Dr. B in NC uses MP, though you might like to connect with Michele, who has been to see this doc. There is actually a new LLMD (integrative) who has offices in both Greenville and Raleigh, if you’d like this contact info. LLMDs treat spirochetal infections with very necessary detoxification supports, so this doc might be an option for you, too.

[Eva Holloway]

Maz,
wow, what info is there. I read this whole article and now I am wondering if I should stop taking Cal-mag for awhile. Maybe for a couple of months and see what happens. Thank you for the info.
I am going to be gone for three weeks to Germany with our choir so I may not be talking much. 😆 😆
Eva

Eva Holloway

[Trudi]

@Eva Holloway wrote:

I am going to be gone for three weeks to Germany with our choir so I may not be talking much. 😆 😆

Hi Eva–
Have a safe trip! I am glad to hear that you are feeling well enough to undertake such a trip. I was born in a small village in Bavaria. We moved to America when I was eight. Will you be singing in this area?

I probably wouldn’t stop anything that seems to be helping you–i.e. the cal/mag–before going on this trip.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Eva Holloway]

Trudi,
we are staying mostly in the Baden=Wuertember area, will be singing with four choirs and do a performance in a place I went to school.
Guess I may wait till after I come back and talk to Dr. K about maybe changing. I had a vancomycin infusion in August, it did help a lot, I may ask for another one in November just to see if it keeps my hands clear.
Thanks for the good wishes, I am taking my little 3-wheel-rollator with me and a cane.
Eva 🙂

Eva Holloway

[SandiS]

Maz,

Dr. B had me on the protocol you mentioned for h. pylori. after I finished that protocol he had me start taking the mastic gum to improve outcome. Since I am having problems again, I suspect he will suggest another round of the antibiotics. He did use MP but has pulled back from that at this time. He now only uses it for difficult cases that are showing no improvement. Dr. B is a good fit for me. I live in Alabama but have family in western NC so I coordinate visits to family with my Dr. appointments. He will also do telephone appointments if necessary.

Sandi

[lynnie_sydney]

All – this thread from 2010 may be of interest re this topic. Frances’ (fkendall) well known doctor in South Africa has always been against magnesium supplementation – she mentions her doc’s father’s experience when treating guineapigs when doing rickettsia research. Her doc is also adamant re giving up sugar in this regard and limits her to 2 pieces of fruit a day. I do know that fructose now considered by many to be the worst kind of sugar for the body. Also in that thread there is a link to a snippet from the ILADS conference about this, stating that supplementation of magnesium and calcium should only be given AFTER an abx regime introduced. Wonder if the transdermal route (for magnesium anyway) may be the answer. I know it works well for Ruth (spacehoppa).

viewtopic.php?f=1&t=4074

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)

[Maz]

@Eva Holloway wrote:

Maz,
wow, what info is there. I read this whole article and now I am wondering if I should stop taking Cal-mag for awhile. Maybe for a couple of months and see what happens. Thank you for the info.
I am going to be gone for three weeks to Germany with our choir so I may not be talking much. 😆 😆
Eva

Hi Eva,

Have a wonderful trip and hope you enjoy every second, singing your heart out! 😀

I’ll second Trudi’s insight to stick with what you’re doing until you get home, just so you don’t upset any apple carts while away. When traveling, stress can be a nuisance on its own, so changing anything in a daily med or supp protocol might exaggerate any creeping symptoms and you need to be in top form for your performances.

Will keep you in our thoughts and have a safe, fun time – not too much fun, though…my hubby says those German beer cellars can get a little wild. 😆

[Maz]

@Rosemary Perth Aust. wrote:

What on earth are you supposed to do when the treatment removes the vitamins and minerals especially the ones you mentioned Maz. Went without them when I first started so i could sort myself out on abx and went on a downhill slide. I really do not know what the answer is, it is all so complicated.

Hi Rosemary,

I agree! There is just so much conflicting info out there. Newer research is seeming to err on the side of no magnesium for Lymies, in particular, because of this bio-film problem and also because when spirochetes are grown in test-tubes, they seem to flourish in a more alkaline solution. Clearly, magnesium has some palliative effects and reduces muscle pain and can even clear migraines, as it is a relaxant. Doesn’t seem fair, does it, that something so palliative could also be encouraging those little buggers to hide out and grow. 😥

That said, there comes a point where one has to have some quality of life with this stuff…you know, “kill the bugs, not the patient.” If taking magnesium is palliative for pain, then this has got to be a safer alternative to heavy pain meds. I’m by no means a “purist” when it comes to all this…I’ve experienced horrendous pain with severe RA and herxing. If it came to a choice between “just kill me now” pain and taking a supplement that relieved pain (I’ve used, epsoms/peroxide baths, Tri-salts and Myer’s Cocktails to relieve herxing), then I’d pick the latter every time…bio-film or no bio-film.

In just my humble patient view, when one has re-gained enough strength to do fine-tuning, then this is an appropriate time to go after bio-films with supps, like nattokinase and serrapeptase, and restricting others, like the minerals. However, when really sick, we are nutrient-starved as it is and it serves no purpose to encourage more herxing than is tolerable….especially without adequate detoxification, which is also severely compromised when chronically ill. It’s not the bio-film that’s toxic…it’s the dying bugs releasing their toxins that creates such a harsh immune response…so these bugs need to be weeded out slooooowwwly.

In the early days, just making the lemon/olive oil drink was about all the energy I could expend. Now that I’m heavily focused on detoxing (FIR saunas, IV glutathione, undenatured whey protein, NAC, alpha lipoic acid, diet, etc) and functioning pretty well, it can only serve me further to hit those bio-films and get working on kicking out the remaining bugs from their hidey-holes. I just didn’t have the wherewithal to be that pro-active when so sick in the early days.

Btw, Rosemary, I ran a search on undetnatured whey protein in Australia and came up with a number of hits. It’s a well-known supp for body-builders the world over. Here is just one Aussie site, but Lynnie may know of better sources. The most important thing in selecting a good quality undenatured whey protein is to ensure it is made from organically-fed cows with no unnecessary additives (like sweeteners)…and there are formulations that exclude lactose, if this is a problem:

http://professionalwhey.com.au/products/protein-powder/wpc-whey-protein-concentrate.html

[Trudi]

@lynnie_sydney wrote:

https://www.roadback.org/forum/viewtopic.php?f=1&t=4074

Hi Lynnie–
Never saw this on Lymebytes–thanks for reposting. This “*Beware of deep massages. They release many toxins” was very apropos for me. Finally gave up massages because I was in such pain the day after (must be full of toxins 🙁 ) and also because I couldn’t get up on the table without a lot of pain (knees)–
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Author]

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