The case for daily dosing?

[Todd WI]

Hi All,

Long time reader, first time poster (not counting the “help me find an AP doc” post)

The common belief on this board appears to be that pulsed dosing is superior to daily dosing.  I understand the case for pulsed dosing, but some AP docs, including mine, are opting for daily dosing.  If the case for pulsed dosing is accessible to me, surely it  is accessible to these AP docs as well. So I?m wondering, what is the case for daily dosing? I plan to ask my doc the next time I see him, but wanted to see if anyone here could shed any light on the subject.

Thanks
Todd

[lynnie_sydney]

If you check The New Arthritis Breakthrough, you'll see that Dr Brown recommended pulse dosing. However, there are two schools of thought these days. One is that daily dosing is more immuno-suppressive and that pulse dosing kills more pathogens………there are supporters of both methods on this Board and people who've had great results from both methods. BTW I am a pulse doser and have had great results. I am also wary of my body becoming resistant with daily dosing and am wary of yeast problems. Other people will post you their experience and opinions. If your Doc wants to daily dose, ask him/her the reasons and maybe you'll need to go ahead and try that first. 

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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)

[Nan – RA]

Lynnie… when you pulse, what dosage are you using?  I have been trying the MWF 100 mg. a day.  I'm still in a lot of pain.  I've done every other day dosing and even started out at 200 mg. every day.  Nothing seems to help.  :crying:

[lynnie_sydney]

Hi Nan
I started out at 100mg MWF. Did that for 3 years. Last May I upped to 200mg bid MWF – and that is to try and kickstart my RF downwards again (it stalled at around mid 300's).
You might try addressing yeast issues (which can mimic RA pain) and also try cutting out gluten and dairy to see if that helps. Also, you dont say how long you've been on AP. It often takes up to 12 months before relief is felt and improvements have been termed 'glacial' – i.e. very gradual and you might not notice them happening. Of course, if new to AP, you could be having a herx – which is a good thing, even tho it might not feel like it. Means you're killing pathogens! Best, Lyn

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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)

[Nan – RA]

Lyn, thank you for your reply.  I have been on AP for 8 months now.  What do you mean when you say to address yeast issues?  I do take a Pearl every day as well as Mangosteen Plus with all kinds of vitamins in it.  My stomach is often bloated and “burny” for want of a different word.  My lower intestine that is.  Would that be yeast?  Even though I'm taking Pearls?  This disease is so confusing!  I don't understand how I got it or why.  I was a very active person before this and even though I am still working (attributed to the Mangosteen Plus!)…. I really miss my walks and golfing.  :doh:

Someone suggested that perhaps I am too acidic… would that make sense?  I don't really have an AP doctor as everyone I've gone too shows absolutely no interest in what I have…. they just want to give me “black box” meds.  I did go to an AP doctor… Dr. A on the east coast (Florida) but he wanted me to work my protocol up to 200 mg. every day.  Everyone here has suggested that it would be too much.  Like I said…. I'm so confused!  And what the heck is this gluten thing??????

Thanks for your help.  It is truly appreciated.

Nan

 

[lynnie_sydney]

Nan – it sounds like the bloating may be a sensitivity to wheat/gluten or to dairy. You may be sensitive though not allergic to either.  You could also be too acidic in the gut – when the old Board is up and running for archived messages, you could search this and get some interesting perspectives/info. A really good piece on celiac syndrome (different to celiac disease) is on an AP Doc's website –  http://www.drrima.com. Take a look at the section under celiac syndrome. I'd also try to cut out dairy for a while and see how you go. BTW 8 months is not a long time to have been on AP – as per my previous post. Try a few things, there may be other suggestions from the very wise folk on this Board. And have patience……..if the RA is pretty new, you have an excellent chance of responding well and relatively speedily. Best. Lyn

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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)

[Rosemary Perth Aust.]

Todd it depends how long it was before you could get help I think. I think the original idea of pulse dosing certainly has merits however if you have a life threatening condition I would most definitely recommend you try and work up to 200mg. per day as pulse dosing is not enough in that instance.  Also in Australia we cannot get the same drugs and our minomycin only lasts a short time in the body so we need it daily in most cases.  I found that I was in a state of collapse without the daily full dose which has saved my life so I think it is a personal thing.   Drs' need to realise that we are not all the same even with the same disease. I am fortunate enough to have a Dr. who understands they do not know everything and allows me to be part of the team. Without him I could not have survived. suddenly I am now off the pancrease which is to help me absorb my food, so my gut has healed at last.  I have had to take that for almost 10 yrs so many different abx  has worked for me even if it has taken a long time. If the heart is effected you will need it everyday.  No one ever realised mine was effected.  (If you have severe tiredness and D deficient.)

[Rosemary Perth Aust.]

Lynn you need a systemic antifungal.  Diflucan 100mg. or you will be in big trouble.  I take it daily and it is still not enough.  You cannot take abx continually without a systemic.  Nystatin is not enough or probiotics.  You probably have a build up already which will take some shifting. See if you can get a blood test for fungus from abx my brother did.  There is also a product out now available in pharmacies which helps fungal problems called olive leaf extract.  I do not think this is enough though and it is quite expensive.  You are entitled to the Diflucan on an authority script in Australia. It is a must have with the treatment or you will lose your memory eventually amongst other things. Please ask your Dr. and they will prescribe for you I am sure.

[Rosemary Perth Aust.]

Nan you sound like you need some Clindamycin as well.  Either IV which can be expensive or in capsule form.  I had to take it.  It makes a world of difference.  Make sure you get a systemic antifungal as well. and something for the pain. The treatment can be very painful but once you work your way up with the dose you will get results.  The treatment can be a bit tricky but is worth it.  See if Dr. will give you some. I hate to see people suffering like you are.  Reminds me of the shocking time I had and no one gave a dam.  they told me I was a nut case and it was all in my head. Don't evert let anyone ever tell you that.

[Nan – RA]

Thank you Rosemary and Lynn for your input.  I'm looking into the gluten theory as it seems to make sense.  I've always had trouble with my gut and bloating/gas.  My husband thinks I'm from Mars!  He has a stomach of steel. 

The pain from the RA continues to rule me.  I try to not let it but, it does.  I think it's because I have to go to work every day and there are days that I just have to make myself get up and go.  I've thought of applying for disability.  Have either of you done that?

[Nan – RA]

Thank you Rosemary and Lynn for your input.  I'm looking into the gluten theory as it seems to make sense.  I've always had trouble with my gut and bloating/gas.  My husband thinks I'm from Mars!  He has a stomach of steel. 

The pain from the RA continues to rule me.  I try to not let it but, it does.  I think it's because I have to go to work every day and there are days that I just have to make myself get up and go.  I've thought of applying for disability.  Have either of you done that?

[Rosemary Perth Aust.]

I have not been able to work at all for years because of the infection. If I were you I would try and get disability then at least you can consentrate on repairing the damage.  Unless you treat each infection you will not make any headway. Withought a systemic you will also end up with another nasty infection as well so make sure you get one of those I am now on 100mg Diflucan morning and night. I have been suffering fungal infection for years so I doubt I will ever get rid of it all but at least I am starting to make some progress now, and getting better daily.  You may need daily dosing of mino also.  If you are only on 3 days a week it may not be enough. think about that as well as adding the Clinda.  Great results are coming from using a combo.  Check for H/P as well. Starch and sugar are you enemy not just the gluten but the lactose as well in the grains.  Rice soaked overnight and well washed is the answer. Would love to hear if anyone has any other grain they can get rid of the starch. Keep away from too much fruit as well.  there is still a great deal of sugar in vegs.    It will help the pain. Sounds like you need to ask for something for that as well so you can get stuck into it.

[Rosemary Perth Aust.]

You will get bloating from fungal overgrowth as well.  Check with breath test as I said for Helicobactor pylori as that causes bloating as well. Blood tests are not reliable except for microscopic of course. I would agree with you Dr. that recommends the 200day but you will need to work up to it or it is too painful.  I had to and eventually did it. If he would give you some low dose morphine. 30mg. twice a day that will stop the liver inflammation and allow you to increase quickly. My Dr. did that and it has been fabulous and for the pain. I do not doubt for a minute that I will get off it when I get everything under control.  No one should have to put up with the pain that many expect you to. Until I found my Rheumy I was in big trouble.  He is a little different from the rest, having seen the two books of Henry's, and the results we are achieving, those of us who are one it. I know it has not been usual to take systemics but it will have to be soon or we will all be in big trouble.

[marg]

Nan, can you get some pain meds for the interim while you sort this out? Depressing and debilitating to have chronic pain. Hope things improve for you.

[richie]

Hi

I think a lot of it depends on which illness you have –many doctors prefer daily ,dosing for scleroderma patients while using pulse dosing for RA –In actuality good results have been obtained in using both methods –I put down a real bad case of scleroderma using daily dosing so naturally I would be partial to daily dosing

richie

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