I am starting LDN on Monday...

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MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 5/28/2008 4:31 PM (GMT -7)   
 
Where have all the LDN users gone???
 
hspenser, Daved,redspot321,fc1001 to name a few...Some posted that they just started, had good results and now they are gone eyes Where are you??? I need some support tongue
 
It has taken me 18 months of suffering through an infection obtained via sig then a severe reaction to Levaquin and then dvt's in left leg due to the inability to use it after the levaquin did its damage...My GI would not prescribe LDN but would gladly start me on Remicade tomorrow, even tho he KNOWS of the reactions I have to all meds...Every med I take I get the worst side effects or it has the opposite effect, for instance, Ambien kept me wide awake and abx seem to make more infections in me...They call me SENSITIVE among other things...
 
So here I am fighting back from near death and all the damage that the infection and drugs did to me as well as severe tendonitis and neuropathies but I managed to live this long and am currently doing fairly well...I now consider myself 95% better from what I was dealing with yet noone would be able to live with the 5% of crap I deal with everyday...I know many know what I mean...
 
I finally found a doc who has an open mind and is not looking to 'kill me' (his words)...He will give me anything I need for comfort (tho I cannot take any pain meds) do any test I ask for within reason, such as the CDSA 2.0 to determine what digestive issues I actually have that could be contributing to rectal bleeding...Currently I am off all meds and supps and just went to my compounder to give him the LDN script...He is ordering the pure powder due to my food allergies and will be making this into a liquid which will dispense 1mg doses so I can adjust accordingly...I am doing the CDSA this weekend and will start the LDN on Monday...
 
I was thinking of having a daily diary on here so I can keep track, get advice along the way and help others be more informed on the success of LDN (I am very optimistic that this drug will be more than helpful in my case)
 
I have not filled out my profile but will list some of the things that I have been diagnosed with;
Ulcerative Colitis, Crohn's, Crohn's colitis,osteoarthritis (neck,knee,SI joint), severe fibromyalgia,chronic fatigue (not syndrome my rheumy says) Just plain sick and tired all the time. Had altered my diet after the first hospital stay in 2006 and just completed the Sage Medical Lab delayed food allergy testing whereby it was concluded that I should have listened to my 'gut' and stopped beef and dairy (I also believe in the MAP theory to some extent) also apples, carrots, oats,scallops, shrooms, brewers yeast,tomatoes, pumpkin...I eliminated them all last Monday and after 10 days have much less inflammation but rectal bleeding and gassy squirts upon rising and all day are quite annoying...My new doc, a proctologist, does not feel I am dealing with Crohn's...I look too healthy!!! He has recommended treatment for hemmies, fissures, etc...all for locally rectal bleeding issues...Of course he would like to do a colonoscopy but I am also dealing with severe PTSD from my 3 hospital stays, mistreatment nightmare so I MUST put that on back burner for now and again, listen to my gut, which 'guided' me to have the CDSA, the allergy testing and beginning the LDN...I have gotten all this accomplished in 1 month after seeing multiple docs over 18 months but one is in cahoots with the other and they stick together...To heck with the patients needs (and wants), it's their egos that come first...
I had been in long remissions since 1995 when I had my first bout due to NSAIDS and zoloft combo, then a new thing emerged, rectal bleeding with start of menstrual cycle...sorry guys tongue
 
Trying to have that diagnosed and my new proctologist would like to schedule the scope around that time due to endometriosis issues...Could be rearing its ugly head again (had 4 lb mass removed from the left side a year prior to the UC diagnosis...I swear this is all connected somehow, but how, and how do I stop it and/or make it go away...
 
So, like redspot said, join me on my journey withy LDN, hopefully to better health for me...Finally...Haven't worked since 2004, not that a working individual is of more importance, but it seems we put such importance on the "what do you do?" in this country, than who we actually are and what we actually contribute...Working only enabled me to pay the doctor bills on time, now I only pay those docs that actually listen and help me, what a concept huh? Well I am sttarting to stray from the reason for my original post but I tend to type what's in my head at the time and dealing with PTSD and very negative experiences with physicians esp. the past 2 years, I cannot help myself...So forgive me for the length of this and check in from time to time...
 
I am a firm believer that only WE that suffer from these illnesses will actually find the 'cause' and the 'cure' for what ails each of us...Each bit of info on here helps someone, somewhere...Let's hope 2008 is a better year for all of us!!!
 
Peace to all~MamaDove

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/28/2008 6:09 PM (GMT -7)   
Wow, MamaDove, it sounds like you have been through a lot. I hope the LDN helps and please do keep us informed. I thought I was the only one who always has reverse reactions to medications-I haven't tried Ambien but Benedryl makes me climb the walls and want to peal my skin off.
Anyway we are interested in hearing your story as you start LDN-maybe if enough people tell their stories we will all find something to help us.
Sj

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 5/28/2008 6:30 PM (GMT -7)   
MamaDove- I thought I've been through alot....WOW I think you have me beat there!!! I really hope LDN works for you!! I'm trying to learn more about this stuff so please keep us informed!! I'm on a mission to find a new Crohn's doctor, someone who will listen to me!

medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 5/28/2008 6:47 PM (GMT -7)   
good luck with the LDN :) id be interested if its prescribed as a salt....at least they trying something besides sulfa/ amines

teaspoon
New Member


Date Joined May 2008
Total Posts : 16
   Posted 5/29/2008 4:40 AM (GMT -7)   
I have just started the ldn. My doc told me to she had to test me at first to find out if I have any yeast or clostridium. Have to get rid of this before ldn could work better. You can take meds for yeast or clostridia at the same time as you use ldn.
I asked my doc to write down the name of the tests she uses
this was
Metametrix Organix and Doctor's Data Comprehensive Stool Analysis. If someone has either yeast or clostridia she treats the clostridia with
metronidazole 500mg twice daily for adults (250 twice daily for little guys), 10 days on, then 4 days off so spores can hatch out, then 10 more days.
Along with this she gives fluconazole (unless susceptibilities show the yeast is not sensitive to fluconazole, then she usually use nizoral, same dosage), 200mg twice daily for adults, 100mg twice daily for the little guys, for three weeks. This is accompanied by high-dose probiotics (she use Klaire Therbiotics Complete and Detox) which must be given two hours away from the metronidazole (anti-fungals are OK along with
probiotics).
To avoid yo-yo effect of first yeast, then clostridia use anti -fungals and anti - bacterials together.
 

Post Edited (teaspoon) : 5/29/2008 5:43:09 AM (GMT-6)


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 5/29/2008 5:01 AM (GMT -7)   
Hi MommaDove! Wow, your story is really something! I truly hope LDN gives you great results! Please email me personally by clicking on the little envelope under my name and I will fill you in on some things regarding LDN.

Good luck and keep us posted! :-)
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Weaning off Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/29/2008 5:37 AM (GMT -7)   
Good Luck MommaDove...
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 5/29/2008 6:17 AM (GMT -7)   

 

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 tongue


there~ishope
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 5/29/2008 6:28 AM (GMT -7)   

MommaDove!

 

I am with you on this journey with you and can testify that LDN works!  I was dx with Crohn’s 30 years ago, went through many treatments that did not work….and alas….I am here today….extremely happy and healthy…thanks to LDN and my GI (for listening to me)!

 

I know that you will do well on LDN.  I am a very “undisciplined” Crohn’s / Colitis patient due to poor food choices and alcohol consumption ( nono ) and LDN still WORKS for me!  I received immediate relief from symptoms and pain on the first day and each day gets better than the last!  Now, almost 3 months later….I feel healthy and it is the BEST that I have felt in over 30 years!

 

Please keep us posted on your progress!  You are “well armed” in this battle against chronic illness….you have LDN!   yeah   

 

Talk with you soon!  

 

Kindest regards,

Patti (a/k/a there~ishope)


 
Patti (a/k/a there~ishope)
*dx Crohn's - June 1978
*surgery - Dec. 2002 - Ileocolectomy/resection
*dx Crohn's/Colitis/Acid Reflux - Feb. 2005 (2006)
*B-12 Injection (1cc/mo)
*Low Dose Naltrexone (LDN) user - March 2008 - FINALLY FOUND A TREATMENT THAT WORKS!


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 5/29/2008 6:41 AM (GMT -7)   

 

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) tongue 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


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 5/29/2008 6:44 AM (GMT -7)   

MMMNAVY...I had to let you know that 'Make sure your suffering has meaning' caught my attention...After what I went through, that line speaks volumes to me...

I tend to miss little things like that with the diminished congnitive issues, but I am glad I saw it, it made my day...Thank you!


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 5/29/2008 6:53 AM (GMT -7)   
 
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

teaspoon
New Member


Date Joined May 2008
Total Posts : 16
   Posted 5/29/2008 10:09 AM (GMT -7)   
MamaDove,
I wish you all luck in the world, and I hope that you'll get help now. Ldn is not a cure, but it's keeping people in remission. According to Dr. Jill Smith's at Penn St. Univ. and her first trial 70 % got in remission and 90 % got health improvements. You have really had your share, and I hope that your fibro also will calm down when you use ldn. A friend of mine has fibro. She is so much better now. Another friend has an auto immune disease named artritis temporalis. She has suffered for 2 years with a terrible headache every day, and she has used prednisone _all the time_.

Her pred dosage has varied between 80 mg and 20 mg, never less and she lost her hair, she almost lost her sight in one eye (due to prednisone),
she had of course other side effects too, she developed osteoporosis, she could not sleep more than a couple of hours bef. she woke up with severe headache. She lacked sleep all the time. She started ldn after reducing pred dosage to 10 mg, and: the morning after she had her first pill she had no pain. It was all gone. Ldn increases the endorphine levels, and regulate the immune system.
 
It's now 3 months since she started using ldn. She's still feeling well, she has no pain, she sleeps all night, she has started to work again, she says she has got a new life. She still uses prednisone, but only 2.5 mg. She has never had such a low dose before.

I have learned that the first two weeks will trigger some side effects. These are small and to live with. Some gets insomnia, some gets vivid dreams. I've had my first night with vivid dreams. They are not scary at all. Melatonin helps insomnia. Side effects like this lasts a couple of weeks. Search ldn and groups and find people with a lot of experience. We need to stay in touch with groups that cares. Whish you all the best, MamaDove.
Please keep us updated! I'll keep an eye on this thread.

Post Edited (teaspoon) : 5/29/2008 11:16:23 AM (GMT-6)


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 5/29/2008 2:23 PM (GMT -7)   
Goood luck, Mama Dove,
I hope it works for you. Keep an eye on your eyes.
Dave D
Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Set for cataract surgery in June 08 on bad eye. Should return to a correcable visionary level. Life looks good (literally) today.
Married with 4 grandkids.


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 5/29/2008 3:10 PM (GMT -7)   
 
I will DaveD...I remember what you went through and it is now the only issue that makes me hesitant to take LDN...Thank you for wishing me luck, Peace~MamaDove

LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 5/29/2008 7:11 PM (GMT -7)   
Thank you MomaDove for your awesome encouraging words!!! I'm almost feeling like my current GI doctor wants to keep me sick. I'm really disappointed in him right now!! :-( I did however find a new doctor (GI too unfortantly) and I'm going to see him next Friday for a 2nd opinion.
So we shall see what he has to say and do. Keep me in your prayers!!

teaspoon
New Member


Date Joined May 2008
Total Posts : 16
   Posted 5/30/2008 3:14 AM (GMT -7)   
A woman told me she went to a pharmacy and asked if they had patients getting ldn. They said yes. Then she asked what the name was on the prescribing doctors. She got a list, called one of them and voila! got her first rx.

nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 5/30/2008 3:20 AM (GMT -7)   
I have been following all the info on LDN because it sounds so promising. I am cheering for you that it will work! One thing I didn't understand in your post is why do they need to get rid of clostridia and/or yeast? I had c.diff (clostridia difficile) about a year and a half ago and although my stool tests are negative my stools have never returned to normal from either that or the crohns who knows. Just curious...
Thanks
Christine and good luck!!!

MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 5/30/2008 4:30 AM (GMT -7)   
 
nikki0294~thanks for the 'good luck'...the issue with the yeast and cdiff should be directed to 'teaspoon', you may want to start a thread if you would like an answer, teaspoon may not see it on my thread...Thanks again~MamaDove

redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 6/1/2008 7:50 PM (GMT -7)   
Keep us updated!! I hope you have the luck I had with a quick response!

EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 6/2/2008 4:02 AM (GMT -7)   
nikki0294 said...
I have been following all the info on LDN because it sounds so promising. I am cheering for you that it will work! One thing I didn't understand in your post is why do they need to get rid of clostridia and/or yeast? I had c.diff (clostridia difficile) about a year and a half ago and although my stool tests are negative my stools have never returned to normal from either that or the crohns who knows. Just curious...


Christine, did you find out the answer to this question? I'm not versed enough to explain it, but it is discussed at length on the user group. In the mean time, the SCD and probiotics will help naturally begin the process of starving/eradicating the bad bacteria, it just won't completely take care of it for most, that's why Dr. McCandless' protocol is working!

MommaDove, continued success!!! :-)
EMom
Mother to 16 year old boy diagnosed in June, 2007.
Weaning off Asacol, omega 3s, digestive enzymes, probiotics, iron, vit. C, calcium w/D3 and a good multivitamin.
Started The Maker's Diet in early September. Gradually learning/using more SCD recipes, too! (cooking challenged)


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 6/2/2008 4:27 AM (GMT -7)   
Good Monday morning everyone...
 
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 devil
 
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

there~ishope
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/11/2008 7:50 AM (GMT -7)   
MamaDove,

I wanted to stop in to see how you are doing today! I hope you are well and looking forward to good health!

Please keep in touch!

Kindest regards,
Patti
 
Patti (a/k/a there~ishope)
*dx Crohn's - June 1978
*surgery - Dec. 2002 - Ileocolectomy/resection
*dx Crohn's/Colitis/Acid Reflux - Feb. 2005 (2006)
*B-12 Injection (1cc/mo)
*4.5 mg Low Dose Naltrexone (LDN) - March 2008 - Finally found a treatment that works for me.
 
["History is made by those who do not go blindly into the night..."  Stephanie L. Ware, Private Investigator - 5/14/08 The Daily Advisor]


MamaDove
Regular Member


Date Joined Dec 2006
Total Posts : 181
   Posted 6/11/2008 10:11 AM (GMT -7)   

 

Hi Patti,

Thanks for thinking of me, that is so sweet tongue

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... mad

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 tongue

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 yeah

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


there~ishope
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/11/2008 11:10 AM (GMT -7)   
Well, MamaDove,

It sounds to me like you have a plan in place. You have direction and a goal. This is all good. But, I will say that I hope you are not "putting off" starting LDN. The reason I say that is because I was somewhat "afraid" to start it on the day I recieved mine in the mail (on a Monday). I told my husband that I wanted to wait until the weekend (because I was not sure how by body would "react'). I guess, thinking back, I was insecure about the "minimal side effect" possibly ... not being minimal. Do ya know what I mean? :o) (Trust issue....like you have grown to know.) Basicly, I was afraid that it would "keep me up all night" or that I would have "bizaar" dreams.... My husband said that he couldn't believe that I was going to wait any longer....I had been waiting so long for realief....LDN was all I talked about for months....I was excited to get started....but I hesitated.

You are correct, I was in very bad shape before LDN and in severe need of relief. I felt like I was living on borrowed time..... Finally, my husband said, "Go ahead Patti, just go ahead and do it! You have been waiting a long time for this!" (He had witnessed my pain for a long time, even though I tried to hide it.) So, with his encouragment (which I will forever be thankful for) I took LDN that night and I awoke the next morning with a great deal of relief (from symptoms and pain)! I could not believe it! (I would have put those words in caps...but I was told caps are "against the rules..." ah...another story..... (I usually use caps when I get excited! LOL!...) Anyway, each day got better and better. I did have a few "crohns-ish" days here and there (but nothing like before LDN). (Proper diet is important, as you know.) I think it takes a few months to really "feel" the "full" effect....but the relief begins from day one.

Seriously, I wake every morning singing a song in my head....I feel content and excited, energetic and happy (Several times, I almost forgot that I am "ill"....!) :o)

Anyway, it is true....the sooner you start LDN the sooner you will get relief. I can't wait for that.... for you!

*****I am wondering why you have your LDN in the fridge? Do you have it in liquid form? I keep my 4.5 mg capsules at my bedside, for easy access, to take before I go to sleep. I am not sure (as I have not looked into it) if it "needs" to be refridgerated (unless it is liquid). I would not want you to compromise the LDN before you start it....ya know? Please check into it...okay? Maybe call Skip's Pharmacy (highly respected). I will email you privately, his phone number in case you need it.

I can't wait to see your "happy dance!!!!" :o) Keep up your good spirits......your journey has just about begun!

Please keep me posted!
Patti
 
Patti (a/k/a there~ishope)
*dx Crohn's - June 1978
*surgery - Dec. 2002 - Ileocolectomy/resection
*dx Crohn's/Colitis/Acid Reflux - Feb. 2005 (2006)
*B-12 Injection (1cc/mo)
*4.5 mg Low Dose Naltrexone (LDN) - March 2008 - Finally found a treatment that works for me.
 
["History is made by those who do not go blindly into the night..."  Stephanie L. Ware, Private Investigator - 5/14/08 The Daily Advisor]

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