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LH1953
Member in Phase 3
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Posted: Wed Feb 20th, 2008 03:20 |
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Interesting cause I have IP like crazy, and have not been able to tolerate ABX very well between the interstitial cystitis, U colitis, Asthma and MCS issues.
I wonder if taking the 1,000mg of ceftin daily for 4 years also added insult to injury causing a high bacteria load. I know my initial 1,25D was only in the low 40's, but lets face it, as sick as I was, is it possible that my immune response was not a true reading, (that it should have been on the higher side). Some that I have spoken to who were not as sick as myself, and also for a much shorter period of time had WAY higher 1,25D levels then I, when tested. (I assume that their immune response was better then mine in showing the 1,25D level).
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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martysfolks
Member in Phase 2
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Posted: Wed Feb 20th, 2008 09:29 |
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| I am just about to enter into phase ll and find this topic very interesting. I had a bout of Gerd, Reflux, indigestion (whatever you want to call it) a few day ago. First I took two acidophillus and waited a bit w/o relief. Then I took the Prevacid my gastro doc gave me and then just in the event it was an IP, I chewed an extra Benicar. Sat up for a while at the computer and in about 45 minutes, I realized that the burning, churning, turning was gone. My mind says it was the Prevacid. If that is true, is the Prevacid contraindicated on MP. I hope it was IP because the relief was so fast. I don't even know what the classification of Prevacid is. I only know I have been off and on it for years. It cured an ulcer I had. I also have a hiatal hernia. Does that ever repair itself? My questions may seem dumb, but I am new at this and very much interested. I never did think that acidophillus or lactobacillus was of any help. Thanks for letting me put my two cents worth in. Dolores
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Scleroderma, RA, MCTD, CAD, Diabetes: Began MP 11/07 Metoprolol 100mg B.I.D., Diltiazem 30mg.BID, Metformin 750mg BID, Glimepride 4mg BID, Warfarin 2.5mg Q.D,Aspirin 81 mg.1 tab Q.Sat, Prevacid 30mg.1 tab prn
Diazepam 5mg prn.& Hydrocordone 1/2tab pr
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LH1953
Member in Phase 3
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Posted: Thu Feb 21st, 2008 02:03 |
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| I want to throw out this question. Those who did not do well with, or do not seem to have the need for probiotics, are they mostly those who do not have U. colitis, IBS, food intolerances, etc?
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 537 |
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Posted: Thu Feb 21st, 2008 03:19 |
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Dr. Marshall, Is what you are saying about the probiotics possibly triggering a Th1 response the same as someone eating more than a low carb diet? That is, do the carbs in the diet divert the innate immune system? I ask this because at this moment in time, I cannot handle the low carb diet (my IP becomes intolerable), and I was told to increase my carbs. I've tried lowering them twice now, and I'm hoping in time I will be able to lower them.
Lori, my 1,25D was 48 and I was very sick pre-MP (and having a very difficult time of it); I also have IBS. However, if I take pro-biotics (even only 1billion), I end up with terrible constipation, feel bloated, and just plain miserable.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2/08 to 5/25/08
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Aunt Diana
Advocate
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Posted: Thu Feb 21st, 2008 16:50 |
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Claire,
Have you tried Colase or Fiberone. These work wonders for me.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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Dr Trevor Marshall
Research Team
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Posted: Thu Feb 21st, 2008 18:16 |
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Lori, Claire,
Most of us have some degree of GI tract problems. I hate to describe the degree of those problems with a diagnosis tag - whether it be IBS, or whatever, as one doctor might give that diagnosis to exactly the same degree of illness that another doctor may feel is still 'normal.'
Sugars do affect the immune system profoundly. You are describing that they seem to de-activate your immune system, and that is not surprising. Juggling your level of immunopathology might be possible by changing the antibiotic dose, as well as changing the sugars.
I never found Probiotics to be helpful. But I never took them for long enough to become dependent upon the immunosuppression they apparently offer. If given a choice, I would avoid probiotics during the MP.
Constipation is certainly changed by the level of carbs in your diet. Drugs such as Colace, docusate sodium, used to work well for me and are OTC. Don't use them any more than you need, it is better to rely on Milk of Magnesia. This suggestion comes with the usual disclaimers about making sure you ask Doc before you change anything...
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LH1953
Member in Phase 3
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Posted: Thu Feb 21st, 2008 20:46 |
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Well, I tried to lower my usual dose of probiotics again in the past day and a half. Bingo, on the verge of diarrhea again. When I stay on my usual dose of 4 total probiotics a day, I am fine. It has also taken me 6 weeks just to have the ability to get the meds increased. My inability to up the ABX even on only a 2 combo instead of the 3 combo, is still very slow.
I never fit the norm in the mainstream of things, and apparently with the MP as well.
Not a problem cause I have progressed with improvement, VERY slow and steady. (again for me I am superwomen now, but so very far from normal.) Thanks for all the info here.
Take Care, Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Frans
Member in Phase 2
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Posted: Sat Feb 23rd, 2008 16:02 |
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Hi all, I have been following this thread and thinking a lot about this subject, but a lot of things about probiotics sound very odd.
Here in the Netherlands they say it improves our bowelmovement. Now there are two things about that that strike me as odd.
First of all, they do not explain why this impaired bowelmovement happens in the first place. I would like to know and inderstand what is wrong that so many people seemingly enjoy beneficial effects from this. Are they all sick in some way?
Another remark about this is that if one needs to improve bowelmovement, try eating a piece of raw chicken. Believe me, you will be running to the toilet in no time...
This sounds stupid, but when one looks at the paper Trevor posted about these athletes, this is exactly what seems to be happening. These people's immune systems are antagonized, period.
This sure makes one wonder if these so-called good bacteria, that are purported to be 'accepted' by our bodies are maybe actually not 'accepted'. Our immunesystem clearly isn't accepting them.
Dave Relman's paper (Trevor has mentioned this paper several times in the past) on the gut microbiota is rather telling in that respect, or at least it should make one wonder.
http://tinyurl.com/37upu8
What Relman's group found that the microbiota in the first months of life differs from that of the 'normal adult microbiota'.
Now, off course the question is, why do some species survive and some don't. It is clear that probiotics trigger an immune response, so perhaps the ones surviving in our bodies have figured out a way to avoid destruction by the immune system?
Maybe the whole thing is even simpler. Our innate immunity is non-specific, meaning it targets parts of bacteria, viruses, etc, regardless of what species.
So maybe, just maybe, our bodies have actually evolved to destroy everything that gets in it, period.
Bacteria (and viruses eg) don't belong in our bodies, none of them. The human body (innate immunity) just seems designed that way.
Just some thoughts, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Claudia
Member in Phase 3
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Posted: Sat Feb 23rd, 2008 23:57 |
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Hi Frans,
IMHO - I think the answer has to do with the fact that a "typical" bowel motion consists of a large proportion of dead bacteria. It also contains "dead cells from the bowel lining" which may be important to factor in for people who are sick with gut disease. So when we are told that probiotics improve bowel motions, it may refer mainly to improving the consistency (bulk)of bowel motions for people who are constipated. A diet with probiotics provides lots of the kind of bacteria (lactobacillus) which our bodies can easily kill off. Milk is our first food and lactobacilli are "safe" for babies' guts to "deal with". I think we have evolved a preference, so to speak, for such bacteria. Obviously, it makes demands on our immune system, but on balance, a healthy person's gut is happy doing this.
Probiotics may also displace (overgrow) any bad bacteria and in that respect, help prevent diarrhea. So that is an "improvement" as well. It is a balancing act.
Dr Marshall says (correct me if I am wrong,) he doesn't think we even need any bacteria in our gut, but of course it is impossible to live in a sterile world, so we are always going to be exposed to bacteria. Better to have some of the "good guys" than let the bad ones take over. I think this is the idea behind the probiotics promotion.
If we eat sufficient amounts of fibre and stay hydrated, our bowel motions should be fine, once we are healthy, without additional probiotics.
Claudia
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MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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OurMiraculousHealing Daughter
Banned
| Joined: | Wed Oct 24th, 2007 |
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| Posts: | 19 |
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Posted: Tue Feb 26th, 2008 02:07 |
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hi.
just a story i thought would be of relevance:
our mum does not have pancreas problems, and yet last week after taking a quarter capsule of a new abx mum experienced severely debillitating non-relenting pain near the bottom of her ribcage on the left side (location of pancreas.)
it was so severe our doctor did an emergency blood test and came out four times after for checkups.
after reading and discussing this story in the netherlands, we realised mum had taken probiotics leading up to and after the dose of meds. (see below for details)
just thought you should know.
Angelina
the following is an excerpt from her post
last week sun night took acidophilus capsule (US brand): 1x L. rhamnosus, Lcasei, L. plantarum, L. acidophilus, B. longum (morinaga strain), B. breve, Pediococcus acidilactici, Lactococcus lactis ssp. Lactis. (new from the US had taken before and was no prob.)
On mon night took 1x lactobacillus acidophilus + bifidobacterium lactis to prepare for Tue night abx (read about gutproblems) and wedn another acidophilus (US brand))
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On MP |1,25D62pg/ml|25D24| joints cracking since 4eva| ME/FM Mycoplasma since 05 (low iron)| no supps| avoid light & D| got NoIRs | olmetec 40mg 6h/Mino 100mg 48hrly |oct12 Ph 1|
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Gail
Member in Phase 2
| Joined: | Tue Jun 20th, 2006 |
| Location: | USA |
| Posts: | 179 |
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Posted: Tue Feb 26th, 2008 17:23 |
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Just wondering...
My doc thinks my RUQ pain is due to my gallbladder. I am not so sure. I don't throw up nor do I have any diarrhea. After a bit of research I am leaning toward my pancreas. Probiotics have never seemed to have any good or bad effect on me (as far as I have been able to assertain), but the idea that the probiotics could potentially have a bad effect on my pancreas, if that is the case, is VERY scary, and I think, very dangerous!
Gail
"It is never too late to be what you might have been." -George Eliot 
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Sarc/lungs, uveitis, gallbladder, hypothyroid, palps; (10/07)1,25D=30/25D=14,(6/08)25D=8; Ph1 Sep07, ModPh2 Nov07, Ph2 Mar08; Synthroid & Allegra:1qday, Lotemax:1q3days, Dramamime, Oxycodone, Benadryl, Ibuprophen, Tagamet:qOD; NoIRs, Keto, covered up
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NickBowler
Member in Phase 3
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Posted: Thu May 29th, 2008 09:29 |
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I think this article sheds some light on the kind of thing that is going on, but obviously it is just one part of a hugely complicated interaction:
http://www.eurekalert.org/pub_releases/2008-05/hms-ibp052208.php
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Sarcoirodis CIDP, MP start 11/07, NoIRs, 02/08 25D-8, Ph3 since 07/08|
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