omg... NEW treatment... IT WORKED!!!

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kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 10/3/2007 10:52 PM (GMT -7)   
g'day!
 
just wanted to give an update about that last post "NEW TREATMENT!" i wrote..  well it has been over a week since my 2nd round of antibiotics... and I AM ALL BETTER!!!
 
I have NO colitis symptoms at all. havent since last day of anti's at beginning of last week.
 
you really all should ask your doctors about this...  the bacteria is called 'fusobacterium varium'  and so far has been found in all tested UC sufferers.
 
the antibiotic combination therapy consisted of:
amoxicillin, tetracycline and metronidazole for 2 weeks
 
i am sooooooooooooooo excited. tongue    to go out all day to the beach and not have to run to the toilet all day long.
 
i urge you all to try it.  so far it has worked for all of my doctor's UC patients.
its worth a try. 2 weeks of antibiotics to be free of this pain and suffering.
 
i even has some wine and (a lot of) cocktails all weekend on a trip to the tropics. it was lovely!!!
and all the good food and alcohol all weekend didnt even trigger a single symptom.  No diarrhea or blood or cramps at all!!!
woohooo
 
good luck to all of you!
please try it!!
 
 

DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 495
   Posted 10/3/2007 10:55 PM (GMT -7)   
cool, will have to ask my doctor about it next time I see him.
4.5 mg of LDN.
Humira
NSI Candida Yeast Management


DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 495
   Posted 10/3/2007 10:59 PM (GMT -7)   
Here is two links from a quick search

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1773498

http://cat.inist.fr/?aModele=afficheN&cpsidt=13913325
4.5 mg of LDN.
Humira
NSI Candida Yeast Management


quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 10/3/2007 11:00 PM (GMT -7)   
Awesome to hear you're feeling well and that it worked for you!! Keep us posted as to how you're doing.

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 10/3/2007 11:04 PM (GMT -7)   
thanks!!!

it might have been my severe determination to have this work after 7 months of bloody hell.... or it might have been the antibiotics... maybe both?
whichever one it was, i dont care!

im better and im stoked!!

again... i hope you all try it and i hope you all get better better better!!!!!!

quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 10/3/2007 11:13 PM (GMT -7)   
Did your doctor check you for it or did he just assume you had fusobacterium varium?

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 10/3/2007 11:18 PM (GMT -7)   
i was not checked and he did not assume.

he heard about it and told me about it.
he suggested that i try it, as he knows of other GI doctors in NSW and QLD (where i am) that have had a lot of success with their patients.
he said he would try it if he was in my position and i agreed.
i will try anything.

the antibiotics cant hurt you unless you are allergic anyway, so i had a go!
and it worked.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 10/3/2007 11:35 PM (GMT -7)   
The f.varium is in all our gastro/respiratory/genito tracts living quite cohesively and quietly. Interesting, however the UC/fv connection. It does say a high percentage of UCers with active disease have it.

I wonder if the usage of probiotics in our foodstuff will eventually help alleviate some of the initial infections that can cause UC....

It's great, however, that you tried it.

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Eric704
Regular Member


Date Joined Jan 2006
Total Posts : 261
   Posted 10/4/2007 12:52 AM (GMT -7)   
Hey Kazy, I asked you in your other thread but you didn't really give a clear answer.

What was the MG you took? Can you put it in a format like:

2 amoxicillin 500mg - 2x a day
2 tetracycline 300mg - 2x a day
2 metronidazole - 2x a day

I want to ask my doctor about it, however I can't find the dosage anywhere. Thanks for keeping us up to date.

Post Edited (Eric704) : 10/4/2007 2:09:35 AM (GMT-6)


NIcepeter
Regular Member


Date Joined Sep 2007
Total Posts : 72
   Posted 10/4/2007 1:25 AM (GMT -7)   
Can you tell us the name of lab please? I will try it out. Thank you very much for your helps. NIcepeter

hedgehog
Regular Member


Date Joined Jul 2007
Total Posts : 102
   Posted 10/4/2007 4:01 AM (GMT -7)   
My GI had also heard of this antibiotic treatment at a conference he attended. I tried it in June and it didn't work for me. Sorry Eric, I don't remember the dosage I was on.
 
Tara 
-female - 32 -diagnosed June 2006
-last 25cm of colon affected
-Salofalk enemas stopped working
-Budesonide enemas stopped working
-xylocaine (lidocaine hydrochloride) enemas - now in remission!!
-Asacol 2 800mg pills 2x/day
-trying to eat less sugar and carbs


UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 388
   Posted 10/4/2007 6:45 AM (GMT -7)   
so Kazygirl, are you all off of drugs now?
12 Asacol
100 mg Imuran
6 or 9 fish oil pills
4 Acidophilus pills


UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 388
   Posted 10/4/2007 6:46 AM (GMT -7)   
quincy said...
The f.varium is in all our gastro/respiratory/genito tracts living quite cohesively and quietly. Interesting, however the UC/fv connection. It does say a high percentage of UCers with active disease have it.


So you're saying everyone has f. varium in them? If so, then of course UC sufferers would have f. varium, because everyone does.

Or am I misunderstanding?
12 Asacol
100 mg Imuran
6 or 9 fish oil pills
4 Acidophilus pills


DanthaMan
Regular Member


Date Joined May 2005
Total Posts : 495
   Posted 10/4/2007 12:07 PM (GMT -7)   
My Aunt has access to the full story. It says that the dose is:

Amoxicillin 500mg t.i.d
Tetracycline 500mg t.i.d
Metronidazole 250 t.i.d

Duration = 2 weeks

Thats 3 times a day I believe.
4.5 mg of LDN.
Humira
NSI Candida Yeast Management


quincy
Elite Member


Date Joined May 2003
Total Posts : 29840
   Posted 10/4/2007 12:37 PM (GMT -7)   
UCinGV said...
quincy said...
The f.varium is in all our gastro/respiratory/genito tracts living quite cohesively and quietly. Interesting, however the UC/fv connection. It does say a high percentage of UCers with active disease have it.


So you're saying everyone has f. varium in them? If so, then of course UC sufferers would have f. varium, because everyone does.

Or am I misunderstanding?

 
Hi...I was too general in my statement..I should have said fusobacterium species.  I found some good info on both, one especially that lists the different names of fusobacterium varium. 
 
It seems a high percentage of UCers have a high count of F.Varium when in active disease state.  I don't know if it's in those who are in remission..I have to do the reading.
 
The most interesting point is the fusobacterium and production of butyrate..  So, Horus or whoever else talks about butyrate...hope you'll come on and clarify some of the scientific aspects of this. 
 
 
 
 
q

*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Harpo
Regular Member


Date Joined Jul 2007
Total Posts : 262
   Posted 10/4/2007 12:45 PM (GMT -7)   
Im going to give this a try if the Pro-Bio fails.. Thank you for your post.
Male 36yrs old. Indeterminate Colitis 6 yrs.


Lialda 2 a day

Protonix
multi vitamin


AKB
Veteran Member


Date Joined Mar 2006
Total Posts : 992
   Posted 10/4/2007 7:20 PM (GMT -7)   
this is so very interesting! Thanks for posting. You're from down under, and this sounds a lot like Australian Dr. Brody's protocol against MAP-- except the MAP protocol is YEARS in duration. How amazing that this is only for two weeks.

I'm pretty confident UC is triggered by an antigen-- which takes advantage of a defect in our genetics. Once triggered, the inflammatory cascade tends to take a life of its own on.

This research would instead suggest that the bacterium either exacerbates the condition (flourishes during active ulceration/bleeding/mucous production, and eliminating it removes that burden from the body), or is the (constant) cause of it (and removing it removes the need for the immune system to overreact in the colon).

Fascinating-- PLEASE keep us posted.
Dx:

Left-sided UC, Jun 2005. Flex-sig only... clear for first 20cms, then inflamed through next 30cms.

Therapies:

Pharmaceutical: Pentasa 3G/day, hydrocort 1x every 7 days
Probiotics: Acidophilus Pearls, Primadophilus Bifidus
Naturals: Caprylic Acid, Methylated B-12, Vit ACDE, Zinc (w/copper), Selenium, Turmeric, Bromelain, Luteolin
Killer Foods: Soda, Fried Food (especially french fries!), Beer, Red Wine, Pepperoncinis


NIcepeter
Regular Member


Date Joined Sep 2007
Total Posts : 72
   Posted 10/4/2007 10:29 PM (GMT -7)   
Hi folks:
What lab we need this test? I will let my GI doc know, try it out. I will keep you all updated. Peter

Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 10/5/2007 5:48 AM (GMT -7)   
This seems too good to be true--is this a cure or at least a successful treatment?
 


Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 3788
   Posted 10/5/2007 10:33 AM (GMT -7)   
Interesting I am trying to make a connection with butyrate from BHT,BHA,TBHQ antioxidants used in some foods.
Not much out there BHA is cytotoxic to Vera cells.
BHA invented/ commercialized 1954, not sure about BHT and TBHQ.
Of course there was UC before BHA/ Old Mike

Delarge
Regular Member


Date Joined Mar 2007
Total Posts : 157
   Posted 10/5/2007 12:49 PM (GMT -7)   
http://www.freepatentsonline.com/20020187152.html

"DEscriptION OF THE PREFERRED EMBODIMENTS

[0015] Fusobacterium varium is a bacterium belonging to the genus Fusobacterium of the family Bacteroidaceae and was detected from the mucosa of a patient with ulcerative colitis at the active phase by bacterial cell culture and immunostaining. The rates of these detections were significantly higher than those observed for patients with ulcerative colitis at the remission stage, Crohn's disease, ischemic colitis, and colomic adenoma. Therefore, this bacterium is considered to be a causal bacterium or an exacerbation factor. From such information, it would be concluded that the patients with ulcerative colitis could be cured by administering a drug selectively killing this bacterium or an antimicrobial agent to remove the bacterial cells from the mucosa in the lesions. More specifically, there can be used antimicrobial agents having high susceptibility to Fusobacterium varium, such as tetracycline, penicillin, MNZ, imipenem, amoxicillin, cefmetazole, ampicillin, fosfomycin and chloramphenicol.

[0016] It has been recognized that the toxins produced by Fusobacterium varium cells have toxicity to vero cells. Therefore, the toxins were analyzed and it was found that they were organic acids produced by Fusobacterium varium and that the principal component thereof was identified to be butyric acid. Thus, when butyric acid was injected into the rectum of a mouse, a lesion similar to ulcerative colitis was induced. Accordingly, if administering a drug, which can neutralize and/or adsorb the butyric acid to a patient, the development of any lesion may be prevented or such conditions may be treated. Specifically, an agent for adsorbing organic acids such as activated carbon can be employed.

[0017] Since Fusobacterium varium cells are adhered to the surface mucosa of active ulcerative colitis, the crisis of ulcerative colitis can be prevented by inhibiting the adhesion of Fusobacterium varium cells to the affected mucosa even if Fusobacterium varium cells are present in the intestinal flora. Specifically, a drug for protecting mucosa such as sucralfate and ecabe sodium can be used.

[0018] As an evidence that Fusobacterium varium cells invade from digestive tracts into the intestinal mucosa, an antibody (serum antibody) against Fusobacterium varium is detected in the sera of the patients with ulcerative colitis in a high detection rate and high antibody titers by the ELISA assay. There has recently been elucidated the invasion mechanism of various kinds of bacteria into mucosa. Bacteria act on the mucosal cells by themselves to thus make the cells produce receptors and then they invade into the cells. Fusobacterium varium cells may possess the same function. Moreover, it would be considered that if Fusobacterium varium cells invade into the mucosa, macrophages can be activated and they may be involved in the crisis and exacerbation of inflammation. Therefore, the inflammation can be controlled by blocking the process of the bacterial invasion into the mucosa."

relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 10/5/2007 1:08 PM (GMT -7)   
The patent website that quincy posted mentioned that F. varium produces butyric acid, which is likely causing ulceration and when this acid was placed in a mouse's rectum, it had similar ulceration to UC cases. Also inflammation may be controlled by blocking the F. varium cells that try to invade through the intestine. And reducing glucose, an energy source, might be why the SCD works for some ppl.

As I understand it, in general, Crohn's patients tend to respond better to antibiotics and the pathogenic bacteria could very well be playing a major role, but with UC it was more sketchy (it works for a few individuals). Who knows, it might be isolating this particular bacterium with the suggested antibiotics that helps. I can't help but wonder if other bacteria do the same, we are just not aware of them and that other types of antibiotics are needed for specific treatment. So probiotics also seem to help when and if they replace the bad bacteria. An interesting theory. Maybe there is something to it.
Pancolitis '04
Yet to go into remission, Flare-up since Aug 12th and still atempting to work in the midst of it
On Colazal, probiotics, Oriental Medical Tea & Diet, Greens+, Fish Oil


Bekjm
New Member


Date Joined Oct 2007
Total Posts : 10
   Posted 10/5/2007 1:49 PM (GMT -7)   

I am glad to hear this treatment is working for some of you. I was on antibiotic and let me tell you I ended up with a c-difficile infection.  Which if not caught in time can kill you.  Keep in mind it is rare. So still stuck with the disease sad    But heres the great thing I started 2 months ago.  I is called Lialda it is Asacol but in 2 pills in the morning instead of 12 throughout the day!  Oh what a life improvement!!!! I must recommend this to all who are on Asacol.  Oh and I am new here I really need the support of mothers with UC it has been a difficult road this year and I just am devastated over my non-accoplishments please help!!!


relativelyquantum
Regular Member


Date Joined Sep 2007
Total Posts : 196
   Posted 10/5/2007 4:11 PM (GMT -7)   
I just got an email from CCFA and here are a couple posts that focus on Crohn's, along the lines of what I mentioned earlier:
http://www.ccfa.org/research/thirdquarter07?msource=HQ08DMENWS10&tr=y&auid=3066292
http://www.ccfa.org/reuters/newecoli?msource=HQ08DMENWS10&tr=y&auid=3066299

It makes you wonder the implications for UC. The concept of an overreaction of the immune system to the bad bacteria, prompted by genetics, seems to be a reasonable cause of IBD. And something about being in a developed country that seems to contribute as well.
Pancolitis '04
Yet to go into remission, Flare-up since Aug 12th and still atempting to work in the midst of it
On Colazal, probiotics, Oriental Medical Tea & Diet, Greens+, Fish Oil


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 10/5/2007 6:29 PM (GMT -7)   
sorry havent been on in a few days... been out and about enjoying life!
i am american, but living in australia, so yeah, the doctors are aussie.
i was not tested for the bacteria.
just had a go on the antibiotics.

**remember, this is antibiotic combination therapy.
not just one type at a time. whole different effect.

and i had to go a 2nd round.
some people only had to do one round, and some did 2. im glad i asked to do the second round.

i still have no symptoms. went drinkin last night and ate a pile of junk food. and i woke up fine. no diarrhea or nothing.
bm's are getting more formed now. like a proper poo finally!

now for the actual process... once in the morning(breakfast) and once at night(dinner)
lets see, the dosage was :

amoxycillin 1000mg tabs - 1 tablet twice a day with food
vibromycin (doxycycline) 100mg tabs - 1 tablet twice a day with food
metroniazadole 200mg tablets - 2 tablets twice a day with food

we did not do the 3 times a day thing as many people start having reactions with that i guess.
it was very mild. only thing was the naseausness and general unwell feeling from antibiotics. but i figured, 2 weeks of being uncomfortable at the chance of getting rid of the UC was worth it.

and i would never go so far to say it was a "cure" unless everyone was fixed by this treatment. it is just that... a treatment. and remember what works for some does not work for everyone.
nothing used to work for me at all. pred, mesalazine, colifoam, budesonide, acupuncture, aloe elite, vsl#3.... i tried everything.. even hardcore dieting... nothing worked. but that stuff does work for people.

i say give it a go and see. it cant hurt you unless your allergic to antibiotics.
it has a good success rate. why not?

and yes, as of 4 days ago, i completely stopped everything.
my doctor and i "think" that the mesalizine was giving me colitis symptoms. so we stopped it for a week to see what happens and so far so good.

i seem to be in the clear!
actually doing better now that im off the mesalazine.

---

all the studies i have read about this antibiotic combination therapy, is that it has worked best on UC'ers rather than Crohns.

---

so, once again, good luck and i hope you all at least try it... cuz what if it works???
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