LDN Support Group Support Group
Support group for those who are already on LDN or wanting to try LDN
Support group for those who are already on LDN or wanting to try LDN
Oh, sorry to hear this! Can you tell me what CRP and Sed Rate mean? Is he doing a lot of other supportive things, like diet-lifestyle? Keep me posted! I added L-Glutamine, and other supplements recommended by my naturopath.My 16 y/old is taking 4.5 mg for 15 weeks, he is ok,
his CRP level and Sed Rate level went down in January but in February jumped
up again/ Sed Rate to 20 and CRP to 4,5 ; his doctor is so against LDN, we have to follow up with him in two weeks and we are sooo nervous,
yesterday Victor wasn't feeling so good, he is better today,
we have to go for his blood check before our app 03.08.13, we will see
Sarah, sounds very good! My dose is 3mg, and I also take Glutamine....seems to be working, but (as you know from this forum) everyone is different. Are you taking a good probiotic? Keep us posted.... And hang in there!I'll join! I'm so torn whether or not I think LDN has helped yet. It's been now almost 2 months, a little less, with a week off in the beginning when I was in the hospital.
My symptoms got bad there last week, but now seem to be tapering off a little (although I'm still have much more pain than usual), and I just started SCD again too a few days ago.
Part of me is still wondering if I'm not getting it right. Maybe the dose is too high? 4.5? Maybe they didn't compound it right? I asked them if they had experience and they said yes (local), but you never know. The first three weeks I was making it myself and I know the dosing couldn't have been uniform on that. I have yet to have any vivid dreams, or any effect at all (no more energy) except a slight worsening of symptoms.
I'm going to get a lower prescription (3? 3.5? What do ya'll think?) and send this one to Skipp's.
She is a pit bull/lab mix... much bigger now!Dede, OMG we have the same dog, is it chiweenie ? so cute,
Victor feels better now
ESR (erythrocyte sedimentation rate) or just "sedrate" and CRP (C-reactive protein) are common blood tests often ordered for Crohn's to check inflammantion,
He is taking also Vit-D, folic acid, probiotics, I would like to add turmeric curcumin - I am afraid this will hurt his stomach, what do you think ?
His diet is not so good because he is very picky eater,
Appreciate your respond !
TracieD—hope Alex is doing okay?!! Give him a big hug. I am taking 1,000 mg of L-Glutamine daily ON AN EMPTY STOMACH. For probiotics, I take first thing in the morning, on an empty stomach also. Oh, I use the powder b/c it gets the best action.... 1/4 teaspoon (or sometimes 1 teaspoon, depends on whose brand) mixed with water.Hi all - Alex got to come home from hospital last night. YEAH! He has consult appt. for gall bladder removal 3/12 and they will schedule the surgery date then. He is starting back on the 4.5mg LDN tonight until about 3 days before surgery in case he needs pain meds. He is feeling sooo much better now that he is home. Thanks for all your prayers.
KROMOM1 - I saw in your previous meds and current that you ended up with Thyroid from the Remicade and now take Synthroid. I'm not sure where I read it because I have read so much since Alex was diagnosed w/Crohn's in 12/12...but I am certain that I saw where LDN is actually being used by some that have thyroid disease. I personally have hypothyroidism and take Synthroid too. Be sure that the doctor takes blood from you more often since you're taking LDN as it has been shown to cause improvement with thyroid disease and it is dangerous to take too much synthroid (bone loss/heart problems). Also, my son started at 1.5mg for 5 days then went to 3.0 for 3 days and then on to 4.5mg since then. He had difficulty sleeping for about a week, but that went away as with most. He really wasn't on it long enough at the 4.5mg dose, when last Monday we rushed to ER and found out that he had Pancreatitis due to gall bladder sludge/stones. Good luck and watch that thyroid.
Glad to hear Victor is doing better!
Dede C - How many mg of the L-Glutamine are you taking each day?
Before the ER trip last week, Alex was taking:
5000 units Vit D
Vit B complex
Fish Oil - 1200mg w/360 mg Omega-3
Food Enzymes (which I'm not so sure didn't contribute to/worsen Pancreatitis)
So good to be home )
My son has been on LDN for 8 months and we have seen fantastic results, healthy tissue from scopes and normal blood work. There are others here who have been on it for 5 or more years and are still feeling great.The following excerpt was taken from http://www.lowdosenaltrexone.org/ :
"Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.
Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler WILL interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.
> IMPORTANT: Make sure to fill your Rx at a compounding pharmacy that has a reputation for consistent reliability in the quality of the LDN it delivers.
The FDA has found a significant error rate in compounded prescriptions produced at randomly selected pharmacies. Dr. Bihari has reported seeing adverse effects from this problem. Please see our report, Reliability Problem With Compounding Pharmacies. Please see the above list of recommended pharmacies for some suggested sources."
More sites: http://www.webspawner.com/users/ldnforcrohns/ http://www.ldnscience.org/ http://www.lowdosenaltrexone.org http://www.ldners.org/
My body overreacts to normal doses of meds. Like a canary in a coal mine. It sucks. I take less than recommended doses of several of my meds. You'd think it was like drinking, where the more you weigh, the more you can drink. Sadly, no. Also, I am on many meds for various and sundry, and want to make sure they all play nicely together.Lisa, forgive me if you mentioned this earlier, but what made you opt to start at 1mg?
7 is amazing! I think the last time I got mine checked, it was 25, but I was told that wasn't too out of the ordinary for females my age. I'm sorry if you've answered this before, but did Jack notice an improvement in symptoms quickly, or was it a slow transition (the usual 12 weeks)?We did ESR right before starting LDN and it was at 10 which is really great we did it again at 8 month mark and it was at 7! We were supposed to have it done early this month which would have been the year mark, but Jack had cellulitis and C-Diff so we thought that would skew any results and so are holding off till next appt in October baring any issues.