Three Days into LDN - Pain Management

[SallyJane]

Hi,

I have posted my story but it has gone onto the general site. I will have to see if I can move it here somehow. Technophobic!

It took me a long time, whilst in a flare, to have LDN prescribed and I am now into my third day. I haven't had any lucid dreams - I just haven't been sleeping - very fitful and tense and good for nothing in the morning. Still, I hope that will go quickly. Other than that, I have not noticed anything.

My worst problem is that I am still in a lot of pain - mainly my sides and the pain radiates to my back. I do have cramps and low abdominal pain but I can almost cope with that. I can only take paracetamol here in the UK and that is not really doing anything for the pain. My mouth is super dry (not the LDN), my tongue is really sensitive and I am force feeding myself as I have no appetite whatsoever, and last night, I was sick, just as I had taken the paracetamol before bed! Joy!


I was just wondering if anyone else has the weird pain in the sides and back as I never experienced this before. I am wondering if it is something else but the GI doesn't seem that bothered.

I am on no other meds and hope to avoid anything else but it is very hard to cope at the moment.

Any advice?

 

[Jmrogers4]

Welcome SallyJane.
Good luck with the LDN, it does take a while to work.
We did not experience any pain like you describe. My son did have abdominal pain the first few weeks of starting LDN.
Does it happen on both sides?

 

[SallyJane]

Hi Jacqui,

Thank you for your post. Yes, it does happen both sides - I was worried something was wrong with my kidneys but the blood results have come back clear in that department! I haven't noticed any worsening of my abdominal pain but perhaps it's early days. Not sure I can cope with any increased pain!

Do you happen to know how long it would take for any improvement to appear on blood test results with LDN - even if no obvious improvement physically? I had some blood test results today (taken before I started LDN) and my CRP up to 91, platelet 870. More bloods organised for 9th December, but I don't know if that will give the LDN time to show a little improvement? I don't really want to have to take anything else.

I cannot eat much at the moment either, as my appetite has disappeared - I find I'm force feeding myself - and losing weight because I can't get the calories in. Weirdly in all this I have not had diarrheah (not spelled this right!)this time round.

Beside myself at the moment - but not giving up - I need the LDN to work!

I hope your son is doing well? How old is he?

Take care,

Sally

 

[Jmrogers4]

He is 14 1/2. We had blood tests in June right before we started and then not until October of that same year after 3 months on LDN and there was a marked improvement, we had them again at month 8 and they were completely normal ESR was 7 and CRP <.5.
My first thought was kidney or gall bladder but I saw on your other post that you had that removed. Have you ever done liquid diet or EEN. Maybe give everything a rest and give the LDN time to work?
I don't know if that is enough time but hopefully. LDN just seems to work pretty slowly. Jack has no appetite (maybe this is a side effect of the LDN) we generally have to remind him to eat and he drinks supplemental nutrition because we need to make sure he is getting enough nutrition and it makes it a little easier to track. If left to his own he would consume about 1000 calories a day from food, he just never feels really hungry and even when he eats it is not a lot. GI likes him at a minimum of 2000 calories a day so the drinks help.
Solid BM's can be a wonderful thing

 

[Kev]

Hi SallyJane

Couple of things... First, check whether you have candida. It is easy... gargle with water, check to see if there are any long strands within the saliva. If yes, then you have a candida issue. Forget getting an MD to do anything about it... try naturopathic remedies

Pain management... I deal with pain on a daily basis... typically 1/2 dozen or more bouts a day... ranging from 20 minutes to a few hours. Not a da.... darned thing I can do about it. Scar tissue. Up until last December, I was taking 4 G of 5-ASA... it took some of the edge off. Had to come off it.. first month and half after was brutal.. then my body learned to cope... adjusted... something... or I gradually acclimated... learned to tolerate the new levels. Another thing I would do for pain (but I seriously don't recommend it) was smoke tobacco... for some bizarre reason it helped (me). Of course, you might want to try medicinal marijuana. (I'm a commercial truck driver, it wasn't an option for me). Anyway... I knew my 'tobacco' treatment, although effective (it gave me immediate relief)
was a killer... so I quit about a month ago.. And, like before, my pain levels skyrocketed. But, also like before... my body seems to be adjusting. Look, I won't snow you, there are days when... just the thought of the pain.. is enough to momentarily depress the hell out of me... it can wear you down over time... but I find something, ANYTHING, to divert my attention... and I get past it. OK, I've rambled on long enough. Now I'm being a big pain.

 

[SallyJane]

Hi Kev,

Thank you. I will try the Candida Test - do you just spit it out after gargling and see if there are any long strands within it? I can't believe my mouth is so dry and it matters not a jot how much I am drinking. Chewing gum helps but not very ladylike!! Any particular natural remedies that you know of for Candida?

Before I had my latest flare, I was lucky - pain in the morning but otherwise generally OK - very fatigued but I coped and at least had a life. I was eating - albeit a restricted diet and at least I felt hungry. At the moment, my pain is constant - I only have to look at food to not want it - and that is not like me at all! I don't even fancy my daily chocolate bar - and that is unheard of!! I have no social life at the moment and am desperately trying to keep my work as an Insurance Broker going, but it is so damn hard. I just have no energy whatsoever. How sad is that?

Taking pain medications to take the edge off - but really not strong enough.

Anyway, on the bright side, 8 days into LDN - I really need this to work for me. Local Doctors planning on doing more bloods 9th December. Seems to be a bit early for me, but they are panicking over the abnormal levels. I don't want to give up on this drug, but neither do I want to take anything else alongside unless I have to as I have had no luck to far with any other meds and they have just worsened the symptoms.

I have noticed that on LDN I am getting more diarrheah (still can't spell this!) - I hadn't had any for months prior to taking it. Hoping just a blip!

Thank you for your support.

Sally

 

[SallyJane]

Another Question!

Can LDN heal fistulas? I think I may have one through to my bladder. Has anyone had experience of LDN sorting or are other meds needed?

.............never rains .......

Sally

 

[Wendy M]

Hi Sally Jane
I started LDN over 7 months ago. I did get some pain in my stomach that was different than normal, but it didn't last too long. Just remember that it is very slooow acting. I am improving but as everyone says it is hard to tell because it is so slow. Then when you look back you realize that things are getting better. I would take the diarrhea as a good sign that the LDN is working because you usually get worse before starting to feel better, I know I did. I don't know about the fistulas hopefully someone else can answer that for you.

 

[SarahD]

Hi SallyJane,

Can I ask where you got your LDN prescription from? It's something I'd be interested in trying if my current meds don't do the trick (I recently started Allopurinol with Azathioprine) but was under the impression that UK doctors will not prescribe it as it's not licensed for use in Crohn's. Did you have to go to a private dr to obtain the prescription?

Thanks,

Sarah

 

[SallyJane]

Hi Sarah,

I was given the option of surgery or Aza and a biologic and told to go away and think about which I wanted to do. This was the NHS in Southampton.

I had already looked at LDN, but when I suggested it to the GI, he said he had no previous experience of it and dismissed it out of hand.

Anyway, whilst trying to make a decision I didn't want to take, I did some more research on LDN and phoned the hospital to say that before I considered their options, I would really like to try LDN. I gave them the LDN websites etc. and amazingly, they came back and said that I could try it.

So, here I am! I think you just have to be a bit pushy and with a fair wind, you may get what you want!

Just hoping it works for me now after all this!!

Sally

 

[SarahD]

Hi Sally,

That's amazing, it just goes to show that it is possible to get LDN on NHS prescription. You're the first person I've heard of in the UK who's been able to get LDN prescribed for Crohn's without having to go through a private doctor. Well done for managing to get your doctor on side, and I hope you have success with the LDN. Keep us updated please

Sarah

 

[Kev]

That is absolutely huge news. I do so hope it works for you. A brief checklist...

Make sure it is Naltrexone, not Naltrexone SR
4.5 mg
freshly compounded... no more than 100 days old max!!! (fresher is better)
Test your saliva for long strands. It indicates overbloom of candida. If so, try to get that resolved first (naturopaths are about the only folks who will take a stab at treating it)

All the best. My prayers are with you. God bless

 

[SallyJane]

Hi Kev,

2 weeks into LDN - I think the dreams are subsiding but somehow, taking LDN seems to have made other pains (Ankylosing Spondilitis) and hip pain worse so I am not sleeping much at all!

My bloods are much worse (taken to see if B12 or Folate deficiency as I have such a sore tongue and dry mouth). Those were OK but albumin lower, neutrophils much higher at platelet levels over 1000 now. I have been called into an emergency appointment tomorrow and am praying that the consultant does not want to take me off the LDN. Or perhaps he will want to prescribe another tablet alongside. Do you know if there is anything that works well with LDN whilst I am waiting for it to work? I don't think I can take steroids with it for example? I would like to be forearmed, so if you, or anyone else has any information they can help me with, that would be great.

When your CD got worse at the beginning of taking LDN, how bad did it get? This is bad - I am in constant pain, more BMs, and doctor says I must have a high pain threshold. I don't think I have - I think I'm just desperate for the LDN to work without having to take anything else, but I think they are worried about me being a perforation waiting to happen.

Worried

Sally:sign0085:

 

[Kev]

How bad it may get is pure speculation. The drugs the body was used to taking to stop or 'suppress' the disease are out of the equation. The disease is probably flaring in response. At some point, the LDN should allow your immune system to start fighting (even this can make you feel worse... your body recognizes the disease as a disease, and tries to fight it)... but it is attempting to fight it with a damaged, suppressed immune system (this is just my non medical, more mythology than science, take on the situation).

This is the hard part... the disease is having a field day, LDN is trying to get your immune system to fight the disease, AND your immune system is sluggish, weak, out of shape.

I believe mine slowly started turning around at about 2 months, but I can't swear to it. I did keep a diary at the time. Fortunately, because it is a 6 year old memory of it now.

 

[SallyJane]

HELP. Slight set back. Bloods at dreadful levels so saw consultant on an emergency appointment yesterday. More bloods and CT scan carried out. Appears I have a large abscess in the TI, which has blocked my right kidney.

Not sure what is going to happen next but they have stopped LDN as they will probably need to give me opiates and I may have to have a stent inserted into my kidney.

Will be in hospital for at least 10 days.

My worry is that they won't want me to go back in LDN, especially as it was such a job to get agreement in the first place.

Any advice please?

Sally:rof:

 

[LibraryGal]

Sally,

I am so sorry to find that you are in the hospital. Will keep you in my prayers.

Melissa

 

[SallyJane]

Hi Melissa, was trying to work out on my I phone how to send you a private message - and failed! Will be in touch again soon.

Sally x