Failure

[katiesue1506]

Hey Guys,

I was just going to let you all know that the LDN seems to be doing nothing for me. I have an appointment with my GI to rediscuss my options treatmentwise. I am hoping I can successfully get back on Remicade, but who knows (I have only ever had two infusions in the past).

Anyways, I'm going to the bathroom upwards of 5-7 times a day, I have pain in the stomach (maybe a 5 or 6 out of 10, but manageable) and I've lost about 20 lbs in 2 months (down to 132). I guess the good thing is that I'm still is a positive state of mind and still hoping for the best.

The one thing I'm nervous about though is stopping the LDN. One time a month or two ago I had to skip 3 days of it because my pharmacy couldn't make it fast enough for me. I ended up with what I would call moderate withdrawal reactions. I was in a depressed mood, and I was just angry. I think I had other symptoms but I don't remember them. The depression of those three days though was enough for me to think about needed antidepressants, because I knew I wasn't acting like myself.

Anywho... just letting you all know that I failed the LDN treatment. And that hopefully I can find a suitable replacement.

 

[Isla]

Ya hun, I am sorry to hear that it isn't working for you. I am glad that you are getting a chance to discuss your options with your doctor though. I will remain positive that between you both you will find something that will work. Good luck!!

 

[Guest]

really sorry to hear that, Katiesue i know how much faith you must have put in to the LDN treatment. maybe you could discuss some medicinal support with your GI, to help you come down off the LDN gently. i hope you find something to help you.

 

[My Butt Hurts]

That sucks, Katiesue - sorry. The losing weight is a sure sign that you need something different. I couldn't find much out about ldn withdrawal symptoms, oe place that suggested agitaion, stuffiness and cough, diarrhea/cramps (great) loss of energy, and crawling skin, but I couldn't find anywhere that said how long that may last. You can get through it though. You're tough. Hey - if you think you need an anti-dep, go for it. Whatever helps. Hope you find some relief soon!

 

[BWS1982]

Sorry to hear KatieSue, but you perhaps may have Remicade to try, or even some others that aren't so common. I'm on Actos, Imuran, Cimzia and Sulfazine just for the Rx ones for Crohns, and a few OTC for Crohns symptoms, and I'm not the worst I've ever been, but I've got a ways to go. Don't know if you'd consider some pred or antibiotics again, because that's what I'll consider if I fail with Cimzia. I just hope you don't run out of options, and they start bringing up surgery. Perhaps the withdrawal of LDN can be mitigated if you taper, as you said, you were cold turkey for 3 days unintentionally.

 

[D Bergy]

The LDN trial period is generally thought of as a six month to a year. On the other hand a person cannot keep going if the big D is constant and you can only afford to lose so much weight.

Kev has had good and bad periods which I think is fairly normal in the beginning. I never had a bad period but I also cleaned myself out before using LDN.

The following is just my understanding of how the process works for a lot of people. A theory that I think is more or less correct but no hard evidence to back it up.

Initial improvement followed by a regression and the big D coming back for a time.

My theory on this reaction is the gut heals somewhat from the immune system boost. Once it really kicks in the body starts killing and removing offending bacteria and whenever bacteria is being killed in the intestinal tract in large numbers the big D is the result.

The difference in this reaction from the normal big D is progress is being made. Normal big D is likely from inflammation, while the LDN induced big D is bacterial die off. Or, at least it is unless you are one of the unfortunate people who does not respond to it positively. The problem, of course, is that big D is the same no matter what the cause. So there is no way of knowing for sure which is happening.

When I used Chlorine Dioxide I also had the big D. I did not have it prior to that.
I knew that big D was to be expected as a wholesale bacterial die off was taking place. It is a common and typical reaction. Once the intestines are cleaned out you no longer have any problems. This was a short lived big D because it only takes a few days to eradicate all the bacteria it is capable of killing. I would expect the die off process using something as mild as LDN could be much longer.

If I was in your position I would take Chlorine Dioxide. But I realize most people are not comfortable using such an untested alternative treatment.

What you could do is try to get an antibiotic prescription to speed up the bacterial kill off process. It needs to be a broad spectrum antibiotic to cover as much bacteria as possible. Also use a probiotic such as VSL#3 which is the best there is. The probiotic is really important when using antibiotics.

Just my thoughts, but you have to decide what is best for you. I really hope you can improve. I know you had a lot of hope for this treatment.

Maybe it would be a good idea to post your experience on the LDN site. There are doctors that frequent the forum and maybe they have some suggestions.

Dan

 

[Crohns08]

Sorry it didn't work out for you KatieSue!

 

[katiesue1506]

Thanks guys.

DBergy: yeah I've thought about the Chlorine Dioxide, but I'm just too sick right now to mess with that. Maybe if I get into remission I'll play with stuff. I mean like I said, I'm down 20 pounds and currently can't eat very much.

Ding and BWS: Ha.. I JUST refilled my LDN prescription and this time I got one 4.5 mg pill instead of 3x1.5 mg pills... so now I can't taper. Figures, huh? I'll have a speak with my doc and see what he thinks when I go on Saturday.

I don't need an antidepressant right now, but I remember when going through the withdrawal I felt like I did. Although antidepressants are for more long drawn out stints of depression which I won't end up having providing the symptoms go away.

I try really hard to keep a positive outlook in my life and I try hard to make sure I don't have to use antidepressants. I know its not always possible for everyone all the time, but I try to make myself feel like the thing that I DO have control of is my outlook on life.

 

[Guest]

you're spot on KatieSue, a positive attitude really helps.. but don't hesitate to ask for support if you feel the blues are sticking around too long or getting you too down.

good luck on Saturday!

 

[D Bergy]

I think the LDN does have an anti depression component to it.

I originally rid myself of depression accidentally when treating inflammation with Turmeric and Ginger at high doses. When I would skip taking it for a while the depression would come back.

What is strange is that I only take low doses of Turmeric and Ginger plus Krill oil but my depression does not come back now. I have wondered why and suspected it may be the LDN but was not sure. I know my doses of the supplements would not have been enough before LDN.

Now that you have experienced your withdrawal reaction it seems that it does indeed have some role in preventing depression.

If my conclusion about inflammation and depression holds water, it would mean that LDN could be holding down inflammation. It could be a direct effect from the drug also. I do not know which is the case, but am glad it does it.

Non of that really helps you, but the more we know about LDN and what it does, or does not do, the better.

I feel bad that it is not helping you. Have you checked to make sure they are not using a Lactose based filler? That would be standard for most pharmacy,s unless otherwise specified. That would certainly cause me some trouble.

Dan

 

[katiesue1506]

I asked for acidophilus. So I think that's what they are putting in it. Lactose wouldn't make me lose this much weight though would it?

 

[D Bergy]

If it is irritating the intestines it could. I do not know if you are sensitive to Lactose or not. I am basically trying to think of all the things that can go wrong.

If they have never compounded this before, I would be wondering if they know what they are doing. They came up with the approved pharmacy list because of all of the compounding failures that kept cropping up.

I would hate to have you sick because of an oversight.

Dan

 

[kromom1]

KatieSue - I am so sorry the LDN isn't working for you. I had high hopes for it, too, and was hoping to start it soon, but my doc wanted me off all my Crohn's meds (Humira, Imuran, and pred) for 4 weeks before starting it, and that didn't work out (made it 4 days before the flareup started). Now I'm back on everything, and am considering Methotrexate.

I haven't read anywhere about possible depression with coming off of the LDN. That is awful. I sure hope you won't have problems and wish you the best with finding something that will work for you.

Lisa

 

[katiesue1506]

Thanks guys. I went to the doc today and I go for a Remicade infusion today at 2:45 (in a couple hours). I was suprised but my doc wanted me in as quick as possible because of my weight loss.

 

[RHOV]

good luck with your infusion! i hope remicade works for you. bring a book and relax for a few hours!

 

[teeny5]

Good Luck Katiesue. I hope this does the trick for you.

 

[BWS1982]

Katie had 2 infusions before, it's not as much if it will work, it's if it'll work this time.....Good luck, Katie, that is quick for a Remicade infusion, considering how costly it can be, did they put it through your insurance that fast or have some extra on hand that they can replace later from you because they are sure of an approval?

 

[jobengals]

hey katie, i'm really sorry to hear the LDN isn't working for you ... I'm trying to start on it myself and still trying to learn as much as possible. I'm curious, how long were you on the LDN for before you decided it wasn't working? And, were you taking any other immunosuppressant meds within a month of your LDN treatment? Sorry if you've covered this earlier..

I really hope you start feeling better,
cheers

 

[katiesue1506]

Jobengals: Nope I was on no other meds and no immunosuppressants, just LDN. I gave it 5 months to work, but felt I lost too much weight to continue onward.

Yeah I got my Remicade fast. I guess since it was approved before it wasn't an issue this time. I'm not sure, the doc just said "go here" and I did. The infusion went great. No ill effects or reactions. Hopefully it does the trick! I go again in 2 weeks to complete the loading doses.

Thank you for your care!

 

[My Butt Hurts]

Good for you, Katie. Hope it works really quick for you. Keep us posted.

 

[BWS1982]

I'm just glad the insurance hasn't (yet? gawd hope not) come in to intervene with a "hey hey hey, she tried that one already, we ain't covering this, it's known you can usually only try it once because of antibody buildup!"......

Hopefully you can just give it a go, and get better.

 

[kromom1]

Good luck with the Remicade, Katiesue! Hope you are feeling well again soon.

Lisa