Kickas.org Forums Treatments, Drugs and Alternatives AS Pharmacy LDN Started last night!

Donette,

I'm interested to find out how you make out starting out at 4.5mg. I've had a script sitting on my dresser top for about two months now as I vacillate as to whether to ask my doc to write out a new script to allow me to start and 1.5mg and increase to 4.5mg over a period of time.

I once used the medication starting at 4.5mg. Thought it helped me a bit early on, but nothing else changed for the next four or so months, so I stopped. Maybe no change was a good thing. I don't know.

Please keep the updates flowing. Thanks!

Hi Jay,

Over the last three days (4,5,6) on LDN I have gotten my left wrist back!! I couldn't bend it forward or back very far, it was very stiff and painful, and now viola!! It works again. I have maintained use of my rt. shoulder and my left arm is about 50% there too. I had an episode Sunday night where over the course of 3 hours my left hip SI joint flared insanely right before bed and when I woke up it was a little stiff for an hour but other than that it was better!! (Amazing to have something heal up that fast.) Since I have had AS that is the one thing I have missed the most, "injuries that heal." I have been very tired lately and plagued with headaches but this could still be the effects of the enbrel. I wish I could have waited to get the enbrel completely out of my system before plunging into LDN but I was starting to seize up big time and I was so afraid of the impending pain. Been there, done that, don't want to go back.

Other things I have noticed on LDN, I went to bed with swollen lymph glands and the startings of a sore throat one night. I woke up the next morning with NO sore throat. Amazing, as I have been on both Enbrel and Steroids in the last 30 days. I have also gone from 5 muscle spasm incidents per night pre-LDN to zero last night. When I get into bed my leg and back muscles can actually relax. I'm a believer. Basically the only things really noticably wrong with me have nothing to do with the As anymore, thanks to LDN. I have nausea and GI pain from the NSAIDS and heart issues and headaches? from the enbrel, or probably the headache is my body "jonesing" for some more steroid. Everything wrong with me right now was caused by a drug I took.
Things that make me go "hmmmmmmmmmm."

Take care,
Donette

Day 7 on LDN

I officially got my left shoulder back today!! Woot, woot! (That's me clapping over my head without steroids in my system!) It's not perfect, still a tiny bit stiff and sore but totally usable, Now I can lift both arms up to the sky. Yay for LDN. My headache comes and goes still, I have started experimenting with more vitamins and water. Any ideas on how to get rid of a headache (without pain killers, narcotics, or a steep cliff?)Hopefully the headache will go away when ALL of the Enbrel is out of my system.

-Donette

I'm guessing that the incorporation of a lot of water is based on the premise that it might be dehydration causing the headache. Are you getting enough electrolytes (sodium, potassium, magnesium, chloride)?

What area of your head aches (i.e. is it a sinus-type headache, a tension type headache, etc.)?

Yes Jay,

I was thinking dehydration with the increase of water. Plus, when I get sick(er) like with this chronic headache, that is unfortunately the first that I stop doing is drinking water. I took magnesium this am and I think it is helping. Haven't done the potassium yet, but will today (I'm still having to spread the vitamins out to lessen the blow to my stomach.) And Sodium.... I'm pretty sure I get plenty of sodium in my regular food. But Chloride?? Is that in conjuction with mag and potassium usually?? Or shall I take a swig of chlor.....ox? (ha ha same root word)

Oh and my headache is straight on both temples, like a vice. It's either there "dull" all the time and sometimes it ramps up to acute-ness, migraine style and I go lay down and shut my eyes. It's crazy that my body is starting to work again and yet with this headache I'm not exactly the "life of the party" I had hoped to be once my AS symptoms abated. Darn.

The one AS symptom that has increased is jaw stiffness. That could be because of all the extra sleep though. I feel like I'm clenching my teeth all night now, maybe from the headache?? Who knows, its a mystery.

When you did LDN for 4 months did you try Low starching it?? Also did you exercise during that time?
I couldn't tell for sure, but two weeks prior to LDN I started excercising 3-4 x per week and I felt a lot better. Maybe its because excercising boosts endorphins too?? I don't know. But I sure felt better the rest of the day when I did that in the AM.

Perhaps you are clenching you jaw at night and that is the source of the headaches during the day? Then the next question is, what is causing you to clench or grind your teeth at night?

Regarding chloride. You can find this in something like Trace Mineral Drops or in a product like magnesium chloride or potassium chloride. I'm not encouraging you to go out and buy more supplements though. I'm not an expert on electrolytes, but seem to recall reading once upon a time that an individual can get enough chloride through the use of regular table salt or sea salt (preferable) as these are sodium chloride. One can also obtain enough electrolytes through homemade mineral broth.

When I was on LDN, I was 100% wheat free and 100% potato free, but had not given up things like rice, millet, legumes, or corn chips (with starchy hummus or peanut butter). No, I did not exercise mainly since rigorous movement would cause an attack of facial pain or a breeze (if outdoors) would set off an attack.

Yes, exercise does boost natural endorphin production. I recall, shortly after it was suggested that the source of my back pain and stiffness was related to AS, we were working a project in Chicago. We worked mandatory 12 hour shifts which would conveniently and routinely morph into 14 hour shifts. I would return to the hotel at my day's end and go work out for 30-45 minutes which would allow me to actually go out for some eats and socialization for a few hours each evening. When we hit the next site in Detroit that summer, I wasn't exercising. Upon completion of my 12 hour shift, that was it. I went home (that was home base at the time) and called it a day. The regular daily exercise made a HUGE difference for me. Must have been those endorphins.

Hey Jay,

Well thank you for the electrolyte advice... THE HEADACHE IS GONE!!!! Yeah baby!! I feel like a million bucks!! Ok I may be exaggerating a little, but at least $750,000!! I took the potassium and the magnesium this AM and by 2 o'clock the headache had "broken" and the fatigue went away and I'm not out of breath. I feel great. Only problem is that it is 11 pm now and for the first time in 18 months I don't need or want sleep!!! yay. I can finally relate a little to what others have felt on LDN, I guess it just took me a little longer???

That is good to know that you felt the difference of the exercise too. Why did you have facial pain?? Is that AS related? And a breeze outdoors?? Does that translate to you were miserable no matter what?? I can relate. Ouch. By the way corn chips and humus or peanut butter sounds delicious!!

Take Care and thanks again for pointing me in the right direction with the supplements.

Donette

Been following the Radon Spa thread as well. Interesting high-level similarity to LDN?

I'm not up on the immune system chemicals as many of you are but seems the Radon treatment also "adjusts" the immune system and increases endorphins.

"Moreover the therapy enhanced concanavalin A (ConA)-induced mitogen response and increased the percentage of CD4 positive cells, which is the marker of helper T cells, and decreased the percentage of CD8 positive cells, which is the common marker of killer T cells and suppressor T cells, in the white blood cell differentiation antigen (CD8/CD4) assay. Furthermore, the therapy increased the levels of alpha atrial natriuretic polypeptide (alpha ANP), beta endorphin, adrenocorticotropic hormone (ACTH), insulin and glucose-6-phosphate dehydrogenase (G-6-PDH), and it decreased the vasopression level."

From: http://www.ncbi.nlm.nih.gov/pubmed/15133294

Donette,

I'm very happy to hear that your headache vanished. Hopefully it was nothing more than mild dehydration. If nothing else, it is one of the potential causes of a headache that you can remedy relatively simply without needing aspirin, NSAIDS, or something more powerful.

My father is one to not realize that he is starting to get dehydrated. He drinks coffee, wine, and maybe 8oz of water a day. My brother-in-law calls him the camel because he (71 years old) can work outside in the intense Georgia heat and seemingly need very little to drink. When I do hear him complain of a headache (which is relatively infrequently), I sternly encourage him to drink and rehydrate before reaching for the OTC pain relievers. It seems to work roughly 80% of the time. I just hope he never finds himself in any sort of renal crisis.

Personally, I've always been one to want to drink plenty of fluids. Once my colon was removed, I became extremely vigilant about my fluid intake and electrolyte balance since it became so easy to dehydrate. One trip to the hospital for fluids after my initial surgery was enough for me.

I still have the facial pain. A couple of doctors have called it a facial neuralgia (trigeminal nerve), one has called it cranial neuritis, another simply called it facial pain (duh!). It's origin is somehow mysterious, and could be AS related, but I personally don't think it is due to other funky neurological stuff going on. It may be part of the same disease process/underlying cause as AS, but I'm not real convinced that it is a direct result of my body's AS related infrastructure changes. No doctor has advocated AS as the cause either.

Yes, I am pretty much miserable no matter what.

Yes, I miss the hummus dearly. However, I don't miss the pain and stiffness that it generated.

Drink up! Keep posting good LDN stories for the forum too!

Hey Donette, that's great!! What do you mean

Quote:

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I guess it just took me a little longer???

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am I wrong... aren't you 1 week in? I can't thank you enough for the encouragement...

I take 2mg tonight... my first night... and I'm starting the evening by seeing Jerry Seinfeld! [So I guess I'm starting with an agonist, then finishing with an antagonist!] [sorry, I'm a little nervous]

keep us posted!
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