I am starting LDN on Monday...

Hi teaspoon,

I have been working with a naturopath for several months trying to survive the levaquin reaction and she muscle tests me every few weeks to see if yeast buggies are still an issue, gladly they are not...I also am doing the CDSA this weekend and tho the tests won't be back for weeks my doc believes LDN cannot hurt me in anyway (he has used it on addicts in full dose for a long time and likes what he sees, that's why he prescribed it on our 2nd visit)

If you must take the flagyl, know the side effects to look for...I had trouble with that drug also but won't go into the ugliness as I don't wish to deter you from trying it for your particular needs...Many people use it successfully with no problems and I am wishing that for you...

Thank you for bringing all that to my attention, you certainly have been doing your research, it shows...It's so nice to have all this knowledge in one place, advice from others that are likely concerned with our well-being because we are all looking for answers...My previous docs were just keeping me sick...Sad healthcare system...

Please post if you'd like how you are doing on the LDN on this thread or you can start your own...I know there are others like me that are quite excited and hopeful that this is the answer for us Crohnies...Just makes sense...

Have a great day~MamaDove

LBJ~I hear you in the search for a new crohn's doc, however, In my experience, I was an ongoing paycheck for my GI, rheumy and gyn...all in cahoots in keeping me ill...one stuck up for the other and kept me medicated (when I would comply) and got me so sick to the point I was near death and the only answer was Remicade...NOT!!! Somehow I found the strength, along with my husband who never gave up on me and in fact was more than instrumental in where I am today...We don't believe there is no cause, no cure for IBD, as these 'experts' say...Our beliefs are based on common sense, what goes in, must come out, our environment, our foods are being poisoned and the human body (or anyother body for that matter) cannot deal with all these toxins...I also had some of the bad heparin, my hair fell out, my body was bruised and my docs didn't even note it in my chart...

One of the GIs that came in while my regular went away, yes went away, while he left me to die, said I was 'falling for an internet hoax' with regard to LDN and before I kicked him out of my room he was able to say that I wouldn't be alive in a year if I didn't choose to use Remicade...Once he said, 'the benefits outweigh the risks', he got the boot...I heard that from my vet right before he vaccinated my beatiful chocolate lab Moose...He was soon after epileptic and we lost our 5 year battle in 2005...The medical people I have found so far suck!Possibly the best thing to come out of my experience is finding my new docs to treat the whole person, they actually care, take the time for me cause they do care and they are interested in finding the actual cause, as am I...A winning combo! So for me, no more GI docs, I went to a proctologist who listened to my story and concluded I was misdiagnosed and agrees with my idea that diet, stress, foreign invaders, diet, stress, diet, stress, bacteria, diet, stress, dairy, beef and so on are an issue for everyone (notice the diet and stress) Also my new DO is fantabulous...If you were in Maine I would certainly recommend you see him, he does not even believe in fibromyalgia and calls it a 'dump' diagnosis but does believe I suffer from auto-immune issues, so severe it is destroying my life, now that diagnosis I can accept...It makes sense! Hence the need for food allergy testing and stool analysis both which can lead to the cause of auto-immune illnesses...

I tend to ramble as I am now cause this is so critical to our health and I know that while some of us are worse than others, I have been at deaths door due to expert advice and I cannot go there again, I won't survive it twice, noone can...I am praying that you will find the right path, as I have, and get some real answers soon...Healingwell is a great place for all of us to come to share our experiences, good and bad, and eventually effect someone's condition for the better...For me that was to steer clear of the GIs...Now please, noone yell at me for giving this advice, I am just sharing what has been so beneficial to ME and of course we hope that not all GIs are out just to make $$$$$, but the 'fab 4' in this practice and what they told me and did to me, all for profit, shouldn't be tolerated and I certainly will get the word out about my experience...

Sorry I babbled...I wish you everything wonderful and that it comes real soon...Sending you angel hugs and a boost of confidence and strength to guide you in the right direction...Peace~MamaDove

Oh Patti, I have chills as I read your post...I am so excited for you and I also appreciate the little icon that shakes his finger at you for drinking...That's honesty my dear...I recall the year I lost my son, I was trying to enjoy a drink in his memory, the bleeding began soon after...I have been advised to drink only french white wines, no buggers in there like the US allows and no brewers yeast which my allergy testing shows as a no-no for me...

Keep enjoying your newfound good health...I believe that Jill Smith, the prof at Penn State dedicating much of her life to the study of LDN will go down in history as the woman who actually understood our suffering to the point that she had to help...A PIONEER with a buch of us lil pioneers helping her to help us, what a concept!!! The more common sense and the less poisons we throw at these diseases, the better off we will be...

My oh my, this is the most I have typed since my hospital ordeal damaged my tendons...It is true what my naturopath says,'if I struggle long enough with these illnesses, I will reap the ultiamte reward of fantastci health'...My ultimate goal is to help strengthen others to beat these illnesses. Sounds good right?

Thank you for the encouraging words and once again I am so proud that you chose to find out about LDN and have the courage to start it and are being rewarded...Today is a great day!!!!!

Peace~MamaDove

I am afraid I will likely have to change the titel of this post...The compounder has not made the LDN as of yet, I may get a call today to pick it up but I also have an appointment with my naturopath tomorrow and would ideally like to be 'muscle tested' just to have a more positive feel about starting it...

I am on my 3rd and final day of CDSA/parasitology test that should yield some answers in a few weeks as well as the new elimination diet I started after receiving my results from Sage Labs regarding delayed food allergies...Yesterday was 2 weeks and no D, no BLOOD, no Cramps, NOTHING!!! Has my gut feeling been correct all along and I do not have Crohn's colitis at all...Only food sensitivities esp. to dairy and beef? My family thinks so and that I suffered all this time due to my trusting nature and taking the advice of my GI's who last told me I would die if I didn't go on Remicade...Either way I would like to stick an ice pick in their eyes

I will be posting about what people think about being misdiagnosed in the near future...My opinion is that many/most of us are in the same predicament, trusting the conventional medicine route...I know that some people out there love their doctors and wouldn't do anything without consulting them...I, on the other hand, feel as though I have been duped and continually made sicker til I was nearly killed by an overzealous, egotistical team of 'experts' and after gaining much knowledge over the last 18 months I am more convinced each and every day...My theory about DIET and LIVER function seems to be playing out quite nicely for me...

From the very beginning when I was told I had UC and to start this med and that med and hearing that phrase "there is no cause, no cure and nothing you are doing is causing this", I knew in my heart of hearts that I would get to the bottom of this...I just may have cause my 'bottom' is feeling great today...

I'll keep you all posted!!!

Peace~MamaDove

Hi Patti,

Thanks for thinking of me, that is so sweet

As always, life threw me a lil monkey wrench in my plans to start LDN...

I picked it up Monday, muscle tested with my homeopathy doc and all went well, however, I once again started my menstrual cycle and the rectal bleed began again...Now being the elimination diet clearly worked after 2 weeks and with meds or supps I felt completely healed, 'cured' more like it, I know am convinced that this rectal bleeding issue is due to ENDOMETRIOSIS which only rears its ugly head during my cycle...I want to confirm that this is it once and for all and will wait til my period ends before I start the LDN...Does that make sense to you? Having had endo so bad they removed my left ovary, tube along with a 4lb. mass in 1993 and then my healht went continually downhill from there adding FMS, CFS, SI joint arthritis, UC came in 1995 and then supposedly worsened to Crohn's yet every time I bring up endo to these morons, they look at me like I have two heads...

I was smarter than the average bear when I asked my GI to scope me on the first day of my cycle but he was slick and said during the proceedure 'we have many woman coming in lately with Crohn's exaserbations during their cycles'...when I looked back and see it's either endo or chocolate, ice cream (dairy) consumption, he laughed at me and said 'she thinks she knows it all'...So while my theory sounds off-base and most experts wouldn't even think of looking for this as a cause, there are many more experts in NY and Mass that believe/know that if rectal bleeding occurs at onset of cycle, it likely is endo related esp. if the woman has a prior history...DUH! All the $$$$$ I wasted and all the suffering (should have put suffering first) listening to these quacks...

As I research the LDN, I see that it is also used for endo but I will still wait to see if my period stops the bleeding ceases too...I will then seek an expert opinion an not just another doc practicing medicine...As you may know, endo is a crazy thing in itself and likely worse to treat than most anything cause it's so evasive and misunderstood...Since I have the diet aspect down and have the LDN in my fridge and the CDSA testing being done as I type this, I am well armed to deal with what comes next and am not a 'scared child' like I was 18 months ago but a well-informed and pro-active woman figuring out my own illness and getting things accomplished and most importantly steering clear of more damaging drugs just to alleviate symptoms of diseases I likely never had...My goodness, talk about learning life lessons...

I am so inspired by your experience with LDN and your courage to try something like that, I know what you likely went through to even consider LDN in the first place...None of us go into it lightly and without researching it til we turn blue, but it seems the majority benefit and that makes the ride worth it

I will certainly post further and what steps I take next and if the rectal bleed stops in a day or so, you will see me on here doing the happy dance

Thanks for caring enough to post to me, I really appreciate it, keep up the good work and enjoy all your good days...

Peace~MamaDove