One year on LDN

[LittleChloe]

It's been a year since Chloe's diagnosis. We've had some tough times for sure but things are currently going great. She had a follow up visit last week and we got the bloodwork back. CRP is normal at .40 mg/dl. Hermoglobin is finally normal at 12.1. She also gained 17 pounds. She has energy now and hasn't missed any school this year for crohns. She doesn't have pain at all anymore and is able to eat a well rounded diet. Every time we have a follow up i expect her doc to be all "wow this is so awesome, I'm going to put other people on Ldn". Instead he just says he's happy she's doing well. I asked him if he would let others have it and he says he would but its still not really comfortable doing it. He told me he brought up Ldn at a meeting with other gi docs and they all just put it down. I got the impression that he's under pressure to prescribe the same things the other docs do and he doesn't really want to be different. Maybe he would stop getting referrals or something like that. I thanked him for letting us have it. He acknowledged that he now believes there is something to it.
All you fellow Ldners, hang in there and give this drug time to work. It takes time for the mucosal layer to repair itself but once it does things just really start to improve. If you have a flare while on it, treat the flare but stay on the Ldn. Please don't automatically think its not working. Wishing you all the best!

 

[D Bergy]

It is great that Chloe is responding so well to LDN. I especially hate when children are ill with Crohns.

You can see that doctors are just as subject to peer pressure as anyone else, which is why it pays to do your own research. If it was not for your LDN suggestion, your doctor would still be clueless about how effective LDN can be.

More importantly, Chloe likely would not be on one of the safest treatments available.

Congratulations and thank you for the update.

Dan

 

[ctrl z]

Hooray Chloe!

It sucks that a lot of Dr's are the way they are when it comes to LDN. That is awesome he even prescribed it to you. Hopefully some day it won't be a drug we have to do so much fighting for.

 

[LittleChloe]

I wish that too. Ideally an entire protocol for Ldn would include diet and supplement recommendations. We've done a ton of research on specific vitamins and herbs and i really believe the combination has contributed to our success.

 

[Jmrogers4]

Yeah for Chloe! :applause: I'm so glad to hear about her success. I think (hope) that the word about LDN is slowly getting around as Jack's doctor was the one to suggest it, we are in our 5th month, haven't noticed the weight gain yet but we are hopeful otherwise he looks and feels fabulous, the energy is back, emotions seem to be level (at least for a teenager)
Thank you for sharing

 

[LittleChloe]

Interestingly the significant weight gain for Chloe didn't happen until just this past summer. My theory is that it took that long to get things healed up so she could absorb the nutrients. Her appetite has also greatly increased in the last 4 months. I wish I knew all that was happening and why, it would be so interesting! Good for you having a doctor that gives you ldn and actually understands it.

 

[Kev]

I love happy endings... or is this more of a beginning? As I said on another post, I feel it is almost criminal the way that prescribing LDN, or even just information on LDN, is being kept a 'secret' by the medical profession; or the info that is being presented isn't based on fact.... it is more the 'accepted' conjecture of a medical peer group. I mean, really, does anyone else get the impression we are dealing with a group that acts more like a bunch of high school juniors than trained, qualified, medical professionals. All inuendo and gossip.

 

[LittleChloe]

I think it's partly fear. When our gi let Chloe have an Ldn script we had to tell him exactly how to write it and where to send it to be compounded. He also said " I will just kick myself if I do this and something bad happens". He was afraid for her and for himself and I guess I understand that. Even though he's not 100% on board he gives us what we want so I'm grateful. Someday I'd love to walk in there and hear him say he put another patient on it. I'd probably give him a hug. ( not really):Flower:

 

[Kev]

I completely understand the reluctance, even fear, some doctors feel when this subject is brought up. What sort of galls me is hearing of doctors, or groups of doctors, who don't do the research, don't offer the 'real' story, or deliberately mis-represent the facts behind LDN so both it and the patient asking about it will just go away. You know what I mean?

It is one thing to approach a doctor who hasn't heard of it, and present them the facts and ask for it; or at least ask them to look into it... and then if they decline out of fear of professional repercussions... that I understand. But, for doctors to deliberately turn a blind eye to it... or to falsify the facts, the studies, the benefits, the risks... because it doesn't fit their pre-conceived notion of how to treat Crohns, or who is in charge... the Dr or the patient... or even worse... which pharmaceutical rep takes the doctor out for fancy dinners at expensive restaurants (I attended one once... I was dating a doctor at the time... 7 course meal, 16 different types of wine... white dinner jacket affair... they rented a fortress as the backdrop). The price to the doctors/guests? Sit thru a 20 minute presentation for a new drug to treat migraine. No question N answer.
But I digress.

Everyone who has suffered thru this disease... waiting, hoping, praying to find something that works... that stops it... knows what that is like. The doctors don't!!! If you've been there, and found your answer.... remember what life was like before that answer, solution, treatment, whatever... came along. Think of how many people, young and old alike, are still waiting... and waiting.. and waiting. And now, think of the old boys club, closed door, closed mindset group of doctors whose oath says 'do no harm' who refuse to consider LDN for whatever personal bias... and I say that is 'criminal'. OK!
Down from the soapbox.

 

[SweetDad]

Hi Little Chloe Mother,

Thank you for getting back with me. I will respond to your message asap.

Regards

 

[leahsmom]

Hi, I'm super excited to hear chloe's doing so good on Ldn. Leans been on it about 9 months now we defiantly can see a big difference. We do not get her RX from her GI but we are still hoping for results like chloe's so that we can show him proof he works. Leah has had some perianal issues which the Ldn didn't help but with flagyl and Ldn it got her back in school and has the teenage energy and attitude going on, hooray I love it when they act like normal kids
What other meds does Chloe take with the Ldn?
Merry Christmas everyone, hoping for a healthy new year for all!
Sharon

 

[LittleChloe]

Sharon, Ldn is the only prescription Chloe is on. In the beginning we used a lot of supplements but we've pared it down based on her bloodwork. Here's the current list.
5000 iu vitamin d3
400 mg magnesium (only for a few weeks then we will go down to 100)
100 mg potassium
15 mg zinc
500 mg krill oil
120 mcg vitamin k2
750 mg curcumin bcm 95
Dr ohiras fermented probiotics (one a day)
2 tablespoons colloidal silver mixed with 2 tablespoons pure aloe Vera juice (1-2 times daily, taken at least 2 hours away from the probiotic)
All these other supplements are the result of research and Chloe's own needs. It sounds like a lot but its 7 pills a day and she gulps them down all at once!

 

[LittleChloe]

Just a brief update. Chloe had a follow up visit today and everything is still good. She still has no significant crohns symptoms.

 

[Jmrogers4]

That is Fabulous! WhooHoooo
:dance::dance::dance:

 

[Kev]

:dance: And now we do the dance of joy :dance:

 

[ljelen]

Sharon, Ldn is the only prescription Chloe is on. In the beginning we used a lot of supplements but we've pared it down based on her bloodwork. Here's the current list.
5000 iu vitamin d3
400 mg magnesium (only for a few weeks then we will go down to 100)

My kidney dr stated that I should take 5,000 iu Vit D3/day after my kidney panel showed me to be deficient at 2,000 iu/day. I don't know if it is a cause or effect of Crohn's, but it made a BIG DIFFERENCE! I was also magnesium deficient to the point that it affected my heart and my dr put me on 400 mg twice a day. I will investigate the effects of colloidal silver and may start to use it.

Thanks for the info!