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

You are so welcome Sue!! I'm sure I got the idea somewhere on KA.

As an update on me, I upped my ldn dosage to 6.0 mg 3 days ago. (have been on 4.5 for 3 months with some good results but still about 50% pain) After 1st day on 6 mg, I had more energy. Now on 3rd day I got my right arm back, yay!! I have very inflamed ligaments in my arms and legs, so inflamed that they are pinched and thus I can't raise my arms up or take very big steps. I was also able to get up at 7 a.m. today to help my kids get ready for their first day of school. That's ONLY 8 hours of sleep.. Since AS, I have needed 10-12 hours just to function. Pretty amazing.. I am happy, I'll keep you posted. Right now my main areas of involvement are hands, feet, arms, legs and one knee.

One difference with LDN I am noticing is that the disease moves through different areas faster. Before ldn, my knee was swollen for 9 months, on ldn the "new" areas are only affected for 3-4 weeks before it moves on. Also, celebrex actually works when I'm on LDN, before none of the nsaids could touch the inflammation I had.

Take Care,
Donette

LDN - YOUR Story

Please see latest LDN Newsletter below. So, come on guys, let em have your LDN story. Don't matter if a few lines, half a page or...a whole booklet? But, let's be having those pens hitting paper (fingers to keyboards...) and a sending in the results to Linda Elsiegood. Her e-mail addie is at the bottom of the n'letter. Now, get cracking

-------------------->>>
contact"@LDNResearchTrust.org

Many of you have submitted your story, made donations and asked for car
stickers.

Julia asked me to thank Daisy, Margaret and Susan for their offer and help with
transcribing Mary Bradley’s radio interviews.

Together we CAN achieve so much!

LDN in the media
It has been fun working with Julia, SammyJo, Cris and Malcolm and we are at the
point of having the International Press Release almost complete.

I’m being interviewed tomorrow for an article which will go into the October
issue of East Anglia’s best selling magazine “Let’s Talk”. This is a good start.

I have the “kick off” meeting with the PR Company on 1st September in London,
which is very exciting.

LDN Stories
We desperately need YOU to share your LDN story for whatever condition you have
and wherever Country you live in.

You can either submit your story:

1. Anonymously – we can add your story to the LDN Awareness Day free online
eBook without your personal details.

2. With your personal details – so that the media can contact you.

Should you wish to remain anonymous that is fine, the main thing is getting your
story known. We can’t say LDN is helping people if we can’t back that statement
up.

It doesn’t matter if spelling and grammar isn’t your thing, we can edit it for
you. Please email as soon as you can.

Flyers
I have just taken delivery of LDN Flyers which are also going to be displayed
throughout Scotland and certain places in the UK.

If you know of anywhere that you can place flyers let me know by replying to
this email with your name, address and how many flyers you need.

Please always ask permission before leaving them anywhere.

Car Stickers
We have had another 2,000 car stickers printed, should you like one or more let
me know, we are posting worldwide.

Donations
We still need to raise funds, the Awareness Week is costing more than originally
expected. However I know we can do it with help! All donations however small
soon add up and are gratefully received.

You can make a donation either by:

1. Sending a UK cheque to:

LDN Research Trust,
PO BOX 1083
Buxton
NORWICH
NR10 5WY

2. Making a direct credit:

Account Name: LDN Research Trust
Sort Code: 20 03 26
Account Number: 60515213

3. Via MyCharityPage

http://www.mycharitypage.com/LDNResearchTrust

Remember if you are a UK Tax Payer to fill in a Gift Aid form, it costs nothing
and we can claim back 28.2% from the Inland Revenue making your donation go
further.

Gift Aid Form http://www.ldnresearchtrust.org/giftaid.asp

Sponsor Christian’s Motospace '09 Banger Rally

http://www.mycharitypage.com/Rally09/


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Tickets cost £2, we receive £1.90 of every ticket sold.

We really need YOUR help to carry on the work we do and this is a fun way of
doing it. Get your family and friends involved.

Please buy your ticket securely online www.everyclick.com/ldnresearchtrust

Your help and support is appreciated!

Thank you

Best Regards

Linda

Day 80 @ 4.5mg

• Insomnia resolved somewhere along the way (I think it was around the beginning of August)...Whew!
• Still good regarding being on my feet (relatively speaking)
• Puffy feet disappeared with regular elevation at night (doctor says this has something to do with how my body processes protein)
• Energy levels are a bit decreased (however, this is due to me ceasing iron supplementation and the red blood cell parasite, known as babesia, that infects my body)
• Still troubled by these cognitive annoyances
• Still have slight trembles, twitches, and general gaffs regarding coordination at too high a frequency

Overall pain levels are pretty good though. My biggest complaint at this juncture seems to be the stiffness and loss of range of motion. Eventually increasing dosage of hydrocortisone to 15mg per day under a new protocol. I need to get clarification from my doctor as to whether there will be a negative interaction between LDN and the Hydrocortisone.

Will update at day 160.

well, this will be day 1.........

bottom's up!

Cheers Sue!!

I need to mention that I did 2 mos. at 4.5 and then 1 month at 6.o and had some depression and not any lasting increase in benefit so I went back down to the 4.5 for this month. I have LOVED not getting sick even when everyone else around me is. Is THAT not newsworthy!!! Especially with cursed swine flu roaming rampant????
One bad thing is that in the last 3 days I've had a 2 inch section of my lower spine stop bending. It is the oddest feeling. It feels like a titanium rod has been welded to my spine in that one spot. I'm a little leary that I may have fused, so I'm planning to talk to the rheumy about possibly trying biologic #2.

Have there been any good discussion threads on staying on the ldn while I try the biologic. I mean in my own line of thinking I would guess the two could possible cross each other out benefit wise.

-Donette

Hey Sue! How are you feeling this morning? Did you remember to eat a little something with your first dose? (I did this for about the first month) are you tired? Let us know...

Hey hi Donette, how are you? I have been on 6m for a month now. I think my depression is actually lifting on the higher dose, but I'm gonna give that decision another month and compare some more objective notes. How did you decide to cut back? Solely on mood changes? Did you notice any pain level returning?

the for what it is worth update;
2 mg for 2 weeks
4 mg for a month
6 mg for a month.
For assorted reasons I am trying a period of no ssz, no pravachol, and maybe no thyroid. why? To see where I am now.

I had 'an event' Friday night that comes once every ten years or so in my life... I woke up nauseous. Y'all need to know I don't throw up. The last time I was in 6th grade. Three times in my life (usually because of drinking stupidly) I have gone straight to dry heaves (and oddly enough felt better right afterwards, like my body thought it did the deed). So the third time was this past Friday. The next day was headachy and I really really think I was crazy dehydrated. I am on ssz, which does this, recently levothyroxine, which does this, and thc which way does this. So instead of giving up pot I've decided to give up most of my pharmaceuticals for a bit. My ex rheumy (whom I've not replaced yet) told me a year ago that it would be a good idea to take a break from the ssz now and then when I feel better to see if any remission is going on. (please note that someone posted somewhere the belief that if you stop ssz and restart it 'may not work again'- was this alohaBen?).
I've decided to see how much benefit I am getting from the ldn alone. I have only taken the rare advil lately when I've had a headache, but not for any joints. ( this is kind of my joint post ). Because of the withdrawal of Armour thyroid I have agreed to start levothyroxine so that I have an excuse to get some regular blood work over the next couple of months. I'm hoping to find out I can- or simply I will- stay off the statin.

Cheers all, let me know how you are doing!
cc

hi CC,

well, i'm alive, that's good. and not sure i feel much differently today than yesterday?

only taking 1.5 mg right now, will increase to 3 mg, then 4.5 mg, not sure when though.

took my pills at 2 am, in bed and asleep about 3 am when my muscle relaxant kicks in (thankfully it didn't interfere with that), but then woke briefly at 4 am, then woke at 6 am and ready to start my day which was crazy and couldn't get back to sleep until some time after 6:30 am, but thought i was getting up so removed my icepacks instead of getting more, so when i woke at 9:30 am, my butt was a nice big "bruise" (really the glutes and/or piriformis spasming) so got up and took more mylanta for the tummy which is doing a bit better and new ice packs and more muscle relaxant and fell back asleep at 10 am. before i woke, must have dreamt that i slept til 3 pm because when i looked at the clock i was confused that it only said 11:30 am. fell back asleep til noon.

so, don't know if this constant waking up is still me in pain and/or laying on ice or was "the insomnia" that people talk about for the LDN?

but i had gotten to a point of sleeping 4-5 hours uninterupted, so not sure?

but at least no dramatically bad side effects or anything from that first pill.

yes, i feel a bit tired today, but i've been like that for the last couple of weeks now where i've been getting so little quality sleep from the pain keeping me awake.

just too early to tell i think. but at least no headache, no new gastro difficulties that weren't already there.

before i took it i watched the videos that trudi posted at the beginning of this thread. he was truly inspirational! it gave me great hope watching it.

Hi CC,

I really did go back down to 4.5 because of the mood thing. I had suffered severe PMS depression a couple of years ago and it came back hard on the 6mg month so I suspected the LDN. Symptom wise, I'm better than without ldn, it makes the celebrex work, I can't live without celebrex now though. I'm still on a good/bad roller coaster with symptoms of AS but the lows aren't as low with ldn. MY current line of thinking is that I am young and relatively new to AS and so I think I may try another biologic soon. I'm afraid I have damage and fusing going on behind the scenes.

Take Care,
Donette

Holy Moly,

I skipped about 5 days of LDN because I ran out and couldn't make it into town to get more and whammo I woke up with a monster sore throat and head cold today. I was getting so proud of my 3 month run with no sickness. Ugh. Another thing of note is that my hubby got the cold one day before I did and I gave him one of my LDN, and he is 90% better on day 2. Wow, fast recovery.

HELLOOOOOOOO NEWS MEDIA, a COMMON COLD PREVENTIVE MEDICINE EXISTS!!!!

Okay, I'm done screaming. It hurts my throat.

-Donette