My doctor REFUSED to discuss LDN

[wchambersnc]

Went to my doctor armed with studies and hopeful he would prescribe...but instead I was told that maybe I should talk to someone like a psychologist about my fear of using Humira!!!! or other biologics. This from a doctor who told me he refuses to take antibiotics????
I am so infuriated right now I can't stand it.
I just had to vent.

I have an appt. in a few weeks with a nurse practitioner that
I heard prescribed it. Not sure what she prescribed it for but I'm hopeful that she was opened enough to prescribe it once she will do it for me.

Wish me luck

Wendy

 

[nogutsnoglory]

Sorry to hear. I know many docs aren't open to it but telling you to see a psychologist over biologics is absurd. Every patient has the right to be concerned with these heavy duty drugs and seek the safest and best outcome.

 

[wchambersnc]

I am going to fire him! Called today to get all my records. I was just dumbfounded! I didn't know what to say! I wish I was quick on my feet!

 

[ce1210]

Yea that is crazy...I would ditch him too. I'm on LDN now and I think it is helping. I use medical marijuana which also helps tremendously without any negative side effects. Medical cannabis is being discussed for legalization in NC I believe.

 

[wchambersnc]

total goodie two shoes when I was a teen! So I have never smoked but at this point I would try it if it would help! I haven't seen anything about it becoming legal in NC

 

[ce1210]

http://www.wbtv.com/story/24449750/disabled-vet-fighting-for-nc-medical-marijuana-appears-in-court

check out this story! its about a NC veteran that called the cops on himself for growing pot to protest the laws...also, you don't have to smoke it, you can vaporize or ingest it and that way don't have to worry so much about the possibility of inhaling carcinogens. You should read up on it, very interesting studies show that marijuana can have anti-tumoral effects, anti-proliferative, anti-inflammatory, and many other medicinal values that could be useful in treating CD. I am in a state where it is not currently legal, but in CO and WA cannabis concentrates and tinctures are available that have been proven to, at least in some cases, help CD patients achieve remission. It helps me tremendously. Sorry to get off topic, you can check out the MMJ section of this forum if interested.

Good luck finding a doctor that also happens to be a decent human being, hopefully you can get the meds YOU want for YOUR disease soon....

 

[Kev]

Well, I first want to apologize. Advising you to quit a doctor, pretty outlandish/drastic of me. I mean, I would do it... but suggesting it to someone else... more of an automatic kneejerk reaction to the jerk. If you've weighed your options, considered the consequences AND still feel the same way... then alright. An official complaint could also be an option, if you felt like pursuing it. Or it might be best to concentrate on you.

 

[wchambersnc]

Kev my husband was mad I didn't fire him on the spot. I'm done with him. Hopefully the next doc will let me try LDN. I feel like that is the best option. If it doesn't work then I will move on to something else, but I don't feel like I can try those other options now that I found this!

 

[Kev]

Well, I'm somewhat relieved your husband and I felt similarly about this quack. But it is very easy for someone on the outside (the pair of us) to quip what someone dealing with this should or shouldn't do... not so easy when you have to deal with the disease 1st hand.

I hope you find someone (that nurse) to prescribe LDN, and that it works for you. all the best

 

[wchambersnc]

Just saw the Nurse Practitioner this afternoon and came home with 1.5 mg LDN! I am hypothyroid and need to start slow. I am so excited! She was awesome. She has been prescribing for 3+ years and they have a compounding pharmacy on site. Praying it works! I know since I'm starting slow it might take a while.

 

[Kev]

Congratulations... So happy for you. Just my opinion, but I wouldn't timeline, expect any positive signs until 1-, 12 weeks AFTER ramping up to 4.5 mg dose. It might occur sooner, but I wouldn't get discouraged if it didn't, OK?

And, check to see if you have any signs of candida overgrowth? (long strands within your saliva). A doctor won't do anything for candida, but a naturopath or other natural 'healer' would/should.... Like, here, there are several 'health spa's' where one can see a naturopath, or chiropractor, get massages, cleansing, etc., and they all typically offer a treatment for candida albicans. I mean, I understand that it is common in everyone... and that asking for a 'cure' is like asking for a cure for the common cold, but ... overgrowth is a treatable condition, even if you can't eradicate the candida. Am I being obtuse? OK, for instance... skin conditions like psoriasis or seborrhoea can never be 'cured', but you can treat 'outbreaks'. Why won't doctors look at treating candida?

OK, strayed off topic... And you probably don't have a candida issue... All the best.

 

[wchambersnc]

Thanks Kev
I know it might take a while....but I'm in it for the long haul.
I really wish I could just go straight to the 4.5 Im not sure how long I have to be on each level before I move up. She did give me a 30 day supply ($15 btw) from the compounding pharmacy on site.
She also did a lot of bloodworm to test for gluten sensitivity and others we talked for so long about other things Im not 100% sure what other test we are running. I had my general bloodwork results with me. She wanted to see my back next week but had no appts. available so I will go back on the 21st to go over results and I will ask her about how we up the dosage.
I am aware of the candida issue. I'm a dental hygienist I think my saliva looks fine but I will ask when I am there.

I am wondering how slowly I will need to ramp up my dosage..... I hope its not to slow!

 

[Kev]

I wish you all the best. I don't have any info on ramping up... There may be some info on how "they" determined the dosage in the paediatric trial... my thinking being that if you took the formula they used for dosing children based on weight, and used it to come up with a 'safe' next step dosage (although my own layman absolutely no medical training or knowledge take is that these dosages are so low, practically every dose is safe theory) based on your weight. Your NP may know of the children's trials, and the formula. Or there may be some parents here who looked into it for their children.

The thing is... I recall all too vividly what my life was like before LDN came along and did its magic for me. And the absolute last thing I want to do is bollocks it up for someone else. A sensitivity to meds is something not to be taken lightly... after my incident with AZA, (I won't rehash that long boring story here) my GI tried me on an extremely low dose... just to confirm it was a bad reaction, and that we had to rule it out as a treatment. So even low doses of some drugs can be problematic...

However, having said that, I think ramping up on LDN should not be a problem, and since you have a supply of 1.5 mg pills... then going to 3 mg, and eventually 4.5, wouldn't be difficult. In the overall scheme of things, taking an extra week or two, or even month for that matter, to get to a solid... yet safe.. working dose... really isn't worth taking chances on shortcuts. I'm into 6 + years now, so adding in an extra month really is small potatoes

 

[wchambersnc]

Kev I followed up with my NP and found out I don't have a gluten allergy....even worse I have a yeast allergy!?! Seriously! She did put me on some probiotics mad other supplements. She wants me to finish up 30 days of 1.5 LDN and then move up to 3mg. I think I feel slightly better. Maybe once I figure out what to eat and avoid I will hopefully feel better.