LDN and Fibromyalgia

[Guest guest]

Hi Aletha,

Often I cannot open attachments the way you sent them. Usually if it is a MS word file can sometimes read those attachments. But that's okay. I've got to find out if for some reason I might have Lyme disease and I have to make sure I don't have too much yeast in my body before I can even ask my doc for a prescription. As far as I know chronic Lyme disease is a possibility since Lyme is probably spread by more than deer tick bites. I gotta get tested. I think docs can test for yeast but not chronic Lyme.

Thanks anyway.

ann

[low dose naltrexone] LDN and Fibromyalgia

Could anyone with Fibromyalgia write and tell me how LDN is helping them. I have been on LDN for - only about 3 weeks now- but in the first one + week, Vicodin may have still been in my system. Looking forward to hearing from you. I am still suffering with lots of pain, fatigue - and I am waiting for some results. I may be expecting too much too soon. Thanks, linda

[Guest guest]

Hello,

I'm new to the group and LDN. Just started it last Thursday. I'm

taking 4.5mg. at night. I stopped taking Norco the same day I started

on the LDN.

Was wondering if anyone else here has Fibro and is on this protocol. I

haven't noticed any changes yet, although I don't seem quite as

fatigued when I wake. Normally, I feel like I haven't slept, although

I'm not feeling the energy I did before I got sick.

Just wanted to say hello to everyone and I am glad to have found an LDN

group to be a part of.

I'd really like to know if LDN has helped you and how long you've been

on it. I've had Fibro/CFS for 5 yrs. and just heard about LDN. I

really hope it helps me with this Fibro pain and fatigue.

Gentle hugs,

Liz

[Guest guest]

My mom had fibromyalgia, she took Prednisone and it worked.

>

> Hello,

>

> I'm new to the group and LDN. Just started it last Thursday. I'm

> taking 4.5mg. at night. I stopped taking Norco the same day I

started

> on the LDN.

>

> Was wondering if anyone else here has Fibro and is on this

protocol. I

> haven't noticed any changes yet, although I don't seem quite as

> fatigued when I wake. Normally, I feel like I haven't slept,

although

> I'm not feeling the energy I did before I got sick.

>

> Just wanted to say hello to everyone and I am glad to have found

an LDN

> group to be a part of.

>

> I'd really like to know if LDN has helped you and how long you've

been

> on it. I've had Fibro/CFS for 5 yrs. and just heard about LDN. I

> really hope it helps me with this Fibro pain and fatigue.

>

> Gentle hugs,

> Liz

>

[Guest guest]

Hi I’ve been on LDN now going on 3 months for

Fibro mainly – it has helped a LOT!!! I am in much much less pain and am

able to do more with less pain.

It did take a couple of weeks before I noticed a major

difference – the only problem I continue to have is it bothers what

little sleep I get – so I am back to taking it in the mornings again.

Good luck, let us know how you are doing.

SeaLady

____________________________________________________________

Click to go wireless with your computer, ultra fast speed.

[Guest guest]

>

> Hello,

>

> I'm new to the group and LDN. Just started it last Thursday. I'm

> taking 4.5mg. at night. I stopped taking Norco the same day I started

> on the LDN.

>

> Was wondering if anyone else here has Fibro and is on this protocol. I

> haven't noticed any changes yet, although I don't seem quite as

> fatigued when I wake. Normally, I feel like I haven't slept, although

> I'm not feeling the energy I did before I got sick.

>

> Just wanted to say hello to everyone and I am glad to have found an LDN

> group to be a part of.

>

> I'd really like to know if LDN has helped you and how long you've been

> on it. I've had Fibro/CFS for 5 yrs. and just heard about LDN. I

> really hope it helps me with this Fibro pain and fatigue.

>

> Gentle hugs,

> Liz

Hi Liz,

Welcome aboard! You've come to the right place. There are several of

us here with fibromyalgia and chronic fatigue, and many people with

other disorders who are very willing to share their stories and to

help each other.

I've had fibro for about 30 years, and nothing ever helped, until I

got myself on LDN! I felt much better within a week after starting it.

First the fog lifted, so my mood naturally lifted too. I felt more

energetic, slept better, and had less fibro pain. And a stubborn rash

on my hands disappeared. By week seven, I could not believe how well I

felt. I had started out diluting the 50 mg tablet (from BARR) for the

first seven weeks, taking 4.5 mg at bedtime. Then I switched to the

quick dissolving tablet from Belmar pharmacy. I have decided that was

a mistake, and have just sent a new script off to Skip's Pharmacy.

There has been quite a lot of discussion here about the wisdom of

using an " approved pharmacy " , and I think the " old-timers " are right.

They've had some experience!

I am now in week seventeen, and have been having a hard time since

week 10. I suspect that the tablet I'm taking does not have an

adequate amount of Naltrexone in it to do the job. I hope that my new

supply will correct that.

I hope that you do well. I do wonder if you started LDN a bit too soon

after stopping the norcos. The usual advice is to wait until all

opioids have cleared from your system, like maybe a couple of weeks. I

know some have waited only a few days after taking post-op narcotics,

with no withdrawal problems. Perhaps it depends on how long one has

taken the opioid and at what dose. If you're not having any problems,

I'd say just stick with the LDN.

Good luck, and do keep us posted on your progress.

Gentle hugs, for sure. Hard hugs can hurt, when you've got fibro :-)

Konnie

[Guest guest]

Hi Konnie,

Thanks for the greeting and the info. I’m taking the

4.5mg. capsule from a local compounding pharmacist. The fatigue that I

thought had lifted, hasn’t yet. Maybe it was a placebo effect.

I think tonight will be day 7 and I’m not sure I’m noticing any

reduction in regards to pain yet. My mood is a bit better and I’ll

take that. I really do hope that the LDN will work for me.

You are right, if could be that I started the LDN too

soon. Maybe it will take a bit longer then for me to start seeing

changes. Fortunately, I haven’t had any withdrawal problems

stopping the Norco last week. I have been taking Tylenol for pain and using

lots of ice packs for pain, along with resting. Do you know if it is okay

to take Flexeril while on LDN? Is it only narcotics which interfere with LDN?

I also take 3mg. Clonazepam at bedtime and a slow-release T3 for my

hypo-thyroid (one a.m. & p.m.) which is compounded. I couldn’t

tolerate the side effects from the regular thyroid medications (heart racing

and palpitations).

I am going to try to walk for about 10 minutes this

morning. Something I haven’t done in quite a while. I’m

trying to think positively and make changes, such as remembering to take my

supplements, try to get a little exercise every day (although this can be

tough) and start eating better. It’s my hope that the more

consistent changes I make in my life as it relates to Fibro, the better chance

I will have of feeling better overall and it might even help enhance the

benefits of the LDN or vice versa.

I think it’s great that the LDN has worked so well for you,

at least for a while, and I really do hope that your new RX from Skip’s

Pharmacy will be the ticket and get you back on track. Would you say that

you noticed the fatigue and fibro fog were the first things that changed for

you on the LDN and that the pain reduction came later, or did the changes occur

at about the same time? I think it’s great that you noticed changes

within the first week!!! You must have been elated, especially after 30

years!

I am glad that there are others in this group with fibro and

chronic fatigue. It will be good to know how the LDN is working for their

conditions and it will be helpful to compare notes. It sounds like it’s

been very successful with MS and I’m really glad about that. I have

a couple of friends (long-distance) with MS and I know that they have suffered

terribly in the past. I don’t know whether they have tried the LDN

or not.

It’s been a difficult battle – living with Fibro and

Chronic Fatigue and all of the changes that I’ve had to make as a

result. I can’t imagine living with this for 30 years!!! You

sound very upbeat and hopeful - good for you Konnie! I guess it is HOPE

that gets us through this most of the time and hopefully, just hopefully, LDN…from

the right pharmacy. After trying so many things, you can start to lose

faith that anything will work, but having others to connect with and to hear

about their successes is helpful and uplifting.

How long would you say would be a good amount of time to determine

whether the LDN is helping? A couple of months maybe? I’m

glad to hear that Skip’s is a reputable pharmacy and that the LDN from

there seems to contain the correct mixture/ratio. I will keep that in

mind should I not notice any improvement with the LDN from my current pharmacy.

Thank you again for the welcome and I will let you know how

things progress. Please keep in touch too, especially once you start with

the new rx from Skip’s.

Oh yeah, gentle hugs always, J

Liz

[Guest guest]

Hi,

First the fog lifted, then the fatigue, then, little by little, the

pain. I didn't expect the effects of 30 years of fibromyalgia, caused,

I believe, by Mycoplasma or some other stealth pathogens, to disappear

overnight, so welcomed any improvement. I was really quite amazed! I

couldn't remember the last time I felt clear headed before starting

LDN, and you wouldn't have found me at all upbeat and hopeful, either.

I had given up hope of ever finding anything to help. In fact my

friends and family were urging me to find myself a cognitive

therapist. Now I don't need one :-)

There are reports on some antibiotic therapies that say long-term

fibro sufferers shouldn't expect much improvement in even a year. I

would not want to do the antibiotic therapy. I'm taking Monolaurin for

the pathogens, and expect that to turn the tide.

Flexeril is OK to take with LDN. It can really help with sleep, and a

little bit with stiffness and pain, but you probably won't need it

once the LDN kicks in. You will probably need less thyroid, too. I

don't know about the clonazepam. Mostly it is the opioids that are

contra-indicated with LDN, but there might be some benzodiazapines as

well. You should probably check out the list on the LDN site. It is

pretty exhaustive.

Give it about six weeks, then if you're not happy with your

improvement, try Skip's.

I've snipped your letter quite a bit, hope I've answered your

questions. Feel free too email me privately if there is something you

want to discuss further.

Konnie

>

> Hi Konnie,

>

> Thanks for the greeting and the info. I'm taking the 4.5mg. capsule

from a

> local compounding pharmacist. The fatigue that I thought had

lifted, hasn't

> yet. Maybe it was a placebo effect. I think tonight will be day 7

and I'm

> not sure I'm noticing any reduction in regards to pain yet. My mood

is a

> bit better and I'll take that. I really do hope that the LDN will

work for

> me.

Do you know if it is okay to take Flexeril while on LDN? Is

> it only narcotics which interfere with LDN? I also take 3mg.

Clonazepam at

> bedtime and a slow-release T3 for my hypo-thyroid (one a.m. & p.m.)

which is

> compounded. I couldn't tolerate the side effects from the regular

thyroid

> medications (heart racing and palpitations).

> Konnie! I guess it is HOPE that gets us through this most of the

time and

> hopefully, just hopefully, LDN.from the right pharmacy. After trying so

> many things, you can start to lose faith that anything will work,

but having

> others to connect with and to hear about their successes is helpful and

> uplifting.

> How long would you say would be a good amount of time to determine

whether

> the LDN is helping? A couple of months maybe? I'm glad to hear

that Skip's

> Please keep in touch too, especially once you start with the new rx from

> Skip's.

>

>

>

> Oh yeah, gentle hugs always, J

>

> Liz

>

[Guest guest]

Hi Liz and anyone else with Fibro………I too have

had wonderful success with LDN helping with the Fibro and hip joint pain.

Sitting was painful, standing, walking and massages………now

I do more, with more energy and less or little pain!!!

I started noticing a little difference within a week of starting

LDN – after a month on the 3.0 I couldn’t wait to move up to 4.5 –

and more improvement happened!!!

SeaLady

____________________________________________________________

Click here to save cash and find low rates on auto loans.

[Guest guest]

What brand of glyconutrients to you take? What to others recommend

for a cost effective solution that works other than MLM products? or

is that possible?

> >

> > Remove from e list

> > RE: [low dose naltrexone] Re: LDN and Fibromyalgia

> >

> >

> >

> > I have been reading about LDN now for two weeks. I have Fibro

> and have improved but I have always felt there was something out

> there that could help me get to the next level. I am considering

> trying the LDN. As anyone who has Fibro knows that there are many

> things out there you can try and some work and some don't. I am

> happy I have been told about LDN and am excited about discussing it

> with my doctor. I am frightful to go off of what I have been doing

> and starting something else. I take glyconutrients which helped

> turn my world around for the better. Can anyone tell me if LDN and

> glyconutrients are ok together?

> >

> > Thank you

> >

> >

> >

> > Marilyn Boss

> >

> >

> >

> >

> >

> >

> >

> > ____________________________________________________________

> > Click here to save cash and find low rates on auto loans.

> >

> >

> >

> >

> >

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[Guest guest]

I use

Advanced Ambrotose from Mannatech.

Marilyn Boss

Purchasing

Rhein Medical Inc.

Phone (813)885-5050

Fax (813)885-9346

mboss@...

[low dose naltrexone] Re:

LDN and Fibromyalgia

What brand of glyconutrients to you take? What to

others recommend

for a cost effective solution that works other than MLM products? or

is that possible?

[Guest guest]

I’ve been taking LDN for fibromyalgia for over two years with really good success. Three years ago I was nearly bedridden and needed to use a ‘walker’ to just get around the house. I never left home except to go to doctor’s appointments. I had tried many pain killers only to have them produce bad side effects. I was also depressed because of all my health problems. Then I had a bad drug reaction to another new drug my doctor gave me and ended up in the hospital. I was afraid I didn’t have much longer to live. I also have a severe case of Restless Legs and someone posted to that group that they’d had some relief from symptoms after starting LDN. They also mentioned that Stanford University was doing a trial of the drug in Fibromyalgia patients. I checked into it, printed out some information to take to my doctor and asked if I could try it. He said he could see no harm in it and prescribed it for me.

It took a couple of weeks for me to notice that I seemed to have more energy. It took about 3 months for me to notice a distinct lessening in pain and by 6 months I no longer needed my ‘walker’. Now it’s been two years and I lead a pretty normal life. I get out of the house regularly, buy my own groceries, attend friend’s parties, and last fall I even took a weekend vacation to the Mall Of America (taking a tour bus) with my daughter and daughter-in-law.

As for other things I’m now doing along with LDN: I follow a gluten-free diet. I’ve cut back on meat protein and try to eat most of my vegetables raw. I also treat any Candida that crops up as needed (According to my Naturopath, Candida especially likes to ‘bloom’ in the spring). I watch my medications carefully, too, as I’ve had to cut out or cut back on most of them. I no longer take any anti-depressants, and I’ve cut my meds for my Restless legs in half. I’ve also been able to cut back on my High blood pressure drug with my doctor’s okay.

I also have Hashimoto’s Thyroiditis, an autoimmune thyroid disease. Recently I started to feel hyper, so I asked my doctor if I could be tested again. Sure enough, I had to lower my Thyroid drugs by 1/4. Slowly but surely, LDN has helped me to heal and get my life back. Good luck on your journey, and if you have any questions, feel free to contact me.

Judy HTo Health Through KnowledgeStarted taking Low Dose Naltrexone on January 20, 2009 for Fibromyalgia, Restless Legs Syndrome, Hashimotos Thyroid and PCOSLDNforFibro/

LDN and fibromyalgia

Posted by: "Lori Vajgrt" lorivajgrt@... dalejr8fan50158

Fri Apr 1, 2011 1:25 am (PDT)

I have been prescribed LDN for my fibromyalgia. I opted to get it thru apharmacy recommend on the LDN website so I'm anxiously awaiting itsarrival!! I am very optimistic about this but trying not to get my hopes up!Had anyone had any luck with it for fibro and how has it helped? ThanksLori

[Guest guest]

It's always lovely to read your success story, Judy. Thanks for this

encouraging post.

Silvia (PPMS, on LDN for over two years also and loving it)

Now it’s been two years and I lead a pretty normal life.

> Judy H

> To Health Through Knowledge

> Started taking Low Dose Naltrexone on January 20, 2009 for

> Fibromyalgia, Restless Legs Syndrome, Hashimotos Thyroid and PCOS

[Guest guest]

I just celebrated my one yr anniversary of LDN for fibro. It gave me my life back. I was facing disability, barely able to make it through the day. Used up all my sick time and had tried all the FDA drugs. I was an overnight responder. I woke up after my first dose (started at 4.5) and felt like I was in a new body. Every day gets better and better. The healing that has occured in remarkable. In addition to pain relief and lifting of the fog, I had spontaneous healing of gingivitis, reduction in blood pressure (need half dose of meds for hypertension ) and my vision improved. I still wear glasses for distance, but no longer need trifocals or eye drops. I'm 59, and only other med I need is Adderal. I got an outstanding evaluation at work, and have a wonderful social life. Life is good... thanks to LDN.