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I have systemic lupus. I would like to begin an antibiotic therapy program to see if it would work because I am a firm believer that it would. My concern is about fungal infections. Wouldn't long term antibiotics kill off the good bacteria that keep the fungus in check? So wouldn't it make sense to take an anti-fungal as well? Also, isn't it important to replenish the body w/ the good bacteria that was killed? So shouldn't a probiotic be prescribed as well as a strict diet in order to replenish the body of the good and healthy bacteria?
[user=626]:headbang:missdaisy2369[/user] wrote:
I have systemic lupus. I would like to begin an antibiotic therapy program to see if it would work because I am a firm believer that it would. My concern is about fungal infections. Wouldn't long term antibiotics kill off the good bacteria that keep the fungus in check? So wouldn't it make sense to take an anti-fungal as well? Also, isn't it important to replenish the body w/ the good bacteria that was killed? So shouldn't a probiotic be prescribed as well as a strict diet in order to replenish the body of the good and healthy bacteria?
missdaisy:
You are correct, the use of antibiotics, particularly long term should be accompanied by the use of probiotics. Unless there is an existing yeast infection, adequate use of probiotics should keep the good bacteria in balance.
My daugher's AP doctor recommends a brand called UltraFlora IB by Metagenics. It has 60 billion of the good bacteria. He recommends that she take SIX per day (the bottle says one per day) this can give you an idea of how much more would be needed when taking antibiotics. I believe that the amount shown on the bottle is for individuals who are NOT on antibiotics. Of course you should discuss the needed amount with your health care provider. I am just showing the amount that Jess is directed to take as an example of what might be needed to keep the good bacteria in the intestinal tract.
Up until we had an AP doctor who recommended a specific brand of probiotics, I went to the health food store and bought whatever brand I could find that had the most count in billions.
However, we learned that these probiotics only work if the patient actually takes them. Last fall, when she moved away to college, my daughter kept taking her minocin daily, but went without the probiotics for about six weeks. She got a raging yeast infection in the usual area as well as several others. She was miserable and she will NEVER do that again. This yeast overgrowth necessitated the use Difulcan. The Diflucan took care of the yeast in several weeks. She has been back on the good probiotics for several months now, and there is no re-occurance of the yeast.
Cheryl Ferguson
That makes a lot of sense. I do have a few questions. I too am curious about Jess's diet. Also, has Jess ever been tested for mycoplasmas? If so, what were the results? Why do you believe that antibiotics are effective in immune disorders? How did you get Jess's doctor to try out the antibiotic therapy? I've been reading a lot about mycoplasmas and learned that it could be causing or greatly influincing my symptoms/lupus. I have ordered a mycoplasma test kit, and I have to go see my doc to try and get the lab script/order for the test…then send it back to the lab. I took notes on Dr. Garth Nicolsons research and will present him w/ that but he's a funny guy and doesnt accept outside info very well. Any ideas?
Hi all,
I've been a bit confused about the amount of probiotics needed. Before starting AP about 2 months ago I asked my prescribing GP about this and she didn't seem to consider it too important, but having read many times on the BB on how necessary it is, I've been taking a daily supplement. Definitely don't want to add leaky gut to my list of problems!
So, if I'm taking mino 100mg MWF what is the balancing dose of probiotic? I'm currently taking a capsule per day of the australian brand Inner Health which contains 25 billion per cap. Would this be sufficient? After reading of the quadrillions that Cheryl's daugther takes it would seem to fall rather short, but there again her mino dosage is probably different too.
Anyone got any ideas or loose guidelines?
Many thanks
Roisin
Jess' diet is the Standard American Diet (SAD). While she tries to get enough nutrition, as an 18 year old and an athlete, that is commonly accompanied by a good deal of “junk food.” If you can imagine what a kid eats that eats most of their meals from the dormatory cafeteria, that would be Jess' diet. Add in a few bagels w/cream cheese, yoplait yogurt, nutrician bars (junk food marketed as health food0 and you have Jess' diet. Her focus is on getting enough calories to support her athletic training (she needs about 4,000/day). She doesn't try to avoid anything. She has cut back on soda and sugery drinks, and focuses on keeping hydrated with mainly water.
As far as the dose of probiotics, Jess is on 100mg twice daily of mino. Also, Dr. F added 500mg of Zith twice a week. The major yeast issue cropped up after forgoing the probiotics for several weeks, plus she was probably not religious about it even before she stopped all together.
Jess has been tested for Mycoplasma three times. The first time she was negative, the second time positive, and the third time negative. She started her AP treatment with IV Clindy (did 3 days of what was supposed to be a 5 day dose), she had an allergic reaction on the third day. She then started the mino about a week later. She did this protocol until March 2008 when we added the Zith.
Missydaisy asked, “Why do you believe that antibiotics are effective in immune disorders?”
At first I beleived it from reading the information on the Road Back Foundation website and the book, Scleroderma, The Proven Therapy That Can Save Your Life. Now I beleive it because it worked. Jess is fully recovered with the exception of very minor Raynaud's. Her Raynaud's orginially was severe and was threatening fingers. All of her other scleroderma symptoms of swelling, contractures, fatigue and lung involvement have completely reversed. She is living a completely normal overactive college life, away from home, training with the NCAA swim and competing.'How did you get Jess's doctor to try out the antibiotic therapy?” We got the listing of AP doctors in our area from RBF and we saw a local experienced AP doctor. As well, we travelled to Boston to see Dr. T who lead the small study that showed this treatments effectiveness for Scleroderma.
Cheryl
Cheryl,
Jess has made an amazing journey:D. I can only hope mine goes half as well as hers. I hate RA. :headbang:
Hugs
wendi
This message is for Rose66 in Australia.
Yes you can get the Metegenics probioitic here, usually from a registered health professional. I found some however in a health shop franchise called Healthy Life. They will get them for you if you have been prescribed before by a naturopath. I get them myself.
Whatever you do Please do not go without a systemic antifungal as well though in Australia any of you, or you will regret it. All our antibiotics are generic and create shocking fungal problems which a probiotic will not rid you of no matter how many you take. I used Diflucan, and had to ask for something then, only 2 per week for years and am paying for it dearly. I did not know any better then but it was a hard lesson. That was all the Dr. at the time gave me. Now I am suffering the consequences. I worked up to 3 Diflucan per day after I realised what the probelm was with loss of memory as well, so now am using a new one called Grisovin, which I hope is stronger. I take 4x 125mg. tablets daily. I am really struggling to now get on top of the fungus and my feet and legs are very painful as a consequence. You cannot take antibiotics long term without a systemic daily, I promise you. My brother did not have one and now cannot touch yeast (bread) and is wondering why. He won't be told and will not ask for one. Do it at your own risk. I am telling you for your own good. There is no point in going to all this trouble for your RA or whatever, if you create another problem. The consequences down the track are horrific. It also effect the brain and behavoir. I have seen it in half a dozen cases, too many to be a coincidence. I have cut my abx right back to the bone to try and help this problem and will keep going until I have it under control. Trust me it is a very serious situation here in Australia even with those not on abx continually. So many, even the young, are suffering from memory loss and are not conecting it to antibiotic use. I can cause early dementure amongst other things. It would be irrisponsible of myself not to tell you what happened to me. Please take care.
Rosemary – I am going to give another point of view. I don't believe everyone automatically needs an anti-fungal. I think this is another case of individual versus universal needs. I certainly have had absolutely no problem with yeast/fungus. In fact I did not even take a pro-biotic at all for the first 3 years (though I was pusle dosing 100mg on MWF so not using abx so heavily). Roisin, I now take Herron Acidophilus Plus (4 billion organisms) am and pm. Encased in a delivery system that enables bacteria to survive the acid environment of the stomach, this is important, because alot of probiotics dont have this, so dont survive to colonise the intestines. However, like my other supplements, I take this only on my non abx days, on the advice of my AP Doc. 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)Lynnie,
You mentioned something about the first three years….have you been on antibiotics for that long? Has it helped? What is your original diagnosis and were you ever tested for mycoplasma?
Missdaisy – my diagnosis is at the bottom of my posts as are my previous and current abx regime. You can add your own info by going to your profile and adding it in the signature box at the bottom (BTW doing this does help people to respond appropriately to questions you may ask about your own situation). For more detail, my testimonial is available from the main site (History of my Palindromic RA and my AP Journey). Later info is on the Personal History and Progress thread on this Board – and I have inserted a link to the original story from there also. I have been on an AP protocol (mino only) for 5 years. I have had wonderful success with it. The reasons for a slight change are documented in the latest info. Best, 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)Lynnie that is what this board is for for all of us to give our opinion and I value yours as well. You have not been on the amount of abx that some of us have. It takes years for the problem to eventuate. All my children are effected and they are not even on this treatment. It is just long term use over the years. Eventually you will find out if you keep going like most of us have. You do what you wish. I just feel the dangers are so high, patients need to be told. I should not have said that all the abx are generic here, but most of them are. the minomycin, both types available here and even the doryx pelleted form which I was surprised to hear. The Bactrim DS they tried to push onto me is 50% fillers. Fortunately the pharmacy I am now going to is able to obtain the original.
I have paid dearly for not being given enough early on, however, getting there – the problem in my pelvis and legs is abating, only because I realised what the problem was. and have a rheumy who understands. There are many Drs' who do. Anyone wanting to check can get a toe nail sample sent by their Dr. to the Mycology Dept of the main Govt. Hospital and it will be found. You cannot always see it unless it is bad, then the toe nail becomes thick and white. Rough heels are another sign and aching feet and legs plus memory loss in some people. The information I have given is for those on a combo or whatever . Personally I am extremely concerned that this is being neglected by health professionals, and they think it is norma, as it is another infection in itself. It can also be very easily picked up in live blood analysis. If you don't mind, that's fine, each to his own, however if I am saying to patients that this treatment works and is great long term, I cannot in all honesty not tell them the truth, on a board like this, especailly when it can be treated so easily, as you go along the way. I am sorry if it annoys you or anyone else but I will keep saying it for the benefit of those who want to treat it. It can cause early dementure.
Hey girl, Lupus/RA I think it's all the same but they just have different symptoms. For the past 4 years the doctors can't tell me which one I have. I started the steriods a year ago and it has made matters worse. I am set to have my IV treatment soon and can't wait and I am very optimistic that that will work for you too! The book by Henry Scammell, “The New Arthritis Breakthrough” speaks about Lupus and other diseases that can be cured with AP. It's all mycoplasmas and fungus.
Find you an AP doctor and make your appt now! No more hesitation. Read the book and tackle this condition early.
LJ
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