LDN and Fibromyalgia

[Guest guest]

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 Aletha,

First Fibromyalgia and now osteo-arthritis are torturing me. I have not even asked my doctor to prescribe LDN yet but I will at my next appointment. She has been very good about giving me the thyroid medication I want. Could you forward the chat you saved on Fibromyalgia to me too? Maybe I'll get some ideas on how to approach her about this. I also need to find a compounding pharmacy in my area. I know Crystal lives in the Atlanta area too and she gets hers from Skip. Perhaps that is the best place but I'm going to ask around.

Thanks for all you do )

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]

Hi ann,

I just sent over some information regarding LDN that might be helpful to show your doctor. Also, I forwarded all of the Fibro chats, but the file is large, so let me know if you don't receive it.

My best

Aletha

[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]

Hi ann,

I just joined this list a couple of days ago and haven't even had a

chance to introduce myself yet, but I wanted to respond to your

note. I had a diagnosis of fibromyalgia 8-9 yrs ago, but pursued

Lyme disease testing by a reference laboratory since I knew I'd had

tick bites.

At first, I tested + for 2 kinds of ehrlichiosis by IgG/IgM, then +

for Lyme by culture and PCR, then + for babesiosis by IgG/IgM, and

finally + for bartonella by PCR. I was treated for 4 yrs, during

which time most of my fibro symptoms subsided.

I also have an autoimmune skin condition which I believe may be

contributing to my current pain (had been pain-free for a few years

after treatment for all of the above). I also have degenerative

joint disease in my knee and back, right hip higher than the left but

left leg 2/3 " longer, and congential clubbed feet. Working on all of

those things w/the podiatrist and orthoped.

Anyway, I recently heard a doctor lecture on Lyme who just wrote a

book ( Singleton, www.lymedoctor.com), and he included info

about LDN. So far my PCP and orthopedist refuse to rx it, and I

haven't found anyone yet in Delaware who will - but I will continue

trying.

I just wanted to share part of my story w/you, and offer that you

email me directly off-line if you like. Oh, and I also worked in a

doc's office who saw many Lyme patients, as well as CFIDS and fibro

for ~4 yrs. MAny of them had yeast problems - I had one in the

beginning, but apparently it's not uncommon when one's immune system

is compromised, for whatever reason. Now I just watch the white

products and sugar (incl fruit) carefully, routinely take a good-

quality acidophilus, and try to incorporate a lot of garlic in my

diet;)

btw, Aletha - I'd be very interested in the fibro chats, too.

Thanks,

Sue

>

> 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

[Guest guest]

Clonazepam or brand name Klonopin is ok to take with LDN. I take it and found out it also helps with people with MS for pain, tremors and spasticity.

Klonopin (US)Rivotril (Can)

Clonazepam

Tremor; Pain; Spasticity

Hugs & Blessings,

Crystal

LDN_Users Group Owner

Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 2 years & 10 months on LDN with Skip's Pharmacy.....

Crystal's MS,TM & LDN Website

Crystal's LDN Gift Shop

Crystal's LDN Support Group

Skip's Compounding Pharmacy

LDN Website

[low dose naltrexone] Re: LDN and Fibromyalgia

Hi,First the fog lifted, then the fatigue, then, little by little, thepain. I didn't expect the effects of 30 years of fibromyalgia, caused,I believe, by Mycoplasma or some other stealth pathogens, to disappearovernight, so welcomed any improvement. I was really quite amazed! Icouldn't remember the last time I felt clear headed before startingLDN, 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 myfriends and family were urging me to find myself a cognitivetherapist. Now I don't need one :-)There are reports on some antibiotic therapies that say long-termfibro sufferers shouldn't expect much improvement in even a year. Iwould not want to do the antibiotic therapy. I'm taking Monolaurin forthe pathogens, and expect that to turn the tide.Flexeril is OK to take with LDN. It can really help with sleep, and

alittle bit with stiffness and pain, but you probably won't need itonce the LDN kicks in. You will probably need less thyroid, too. Idon't know about the clonazepam. Mostly it is the opioids that arecontra-indicated with LDN, but there might be some benzodiazapines aswell. You should probably check out the list on the LDN site. It ispretty exhaustive.Give it about six weeks, then if you're not happy with yourimprovement, try Skip's.I've snipped your letter quite a bit, hope I've answered yourquestions. Feel free too email me privately if there is something youwant to discuss further.Konnie>> Hi Konnie,> > Thanks for the greeting and the info.

I'm taking the 4.5mg. capsulefrom a> local compounding pharmacist. The fatigue that I thought hadlifted, hasn't> yet. Maybe it was a placebo effect. I think tonight will be day 7and I'm> not sure I'm noticing any reduction in regards to pain yet. My moodis a> bit better and I'll take that. I really do hope that the LDN willwork 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 regularthyroid> medications (heart racing and palpitations) . > Konnie! I guess it is HOPE that gets us through this most of thetime 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 determinewhether> the LDN is helping? A couple of months maybe? I'm glad to hearthat 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,

I have been on LDN now going into my 4th month. I am taking 3.5mgs at night. The first 5 nights were quite rough--not much sleep and the vivid dreams. I think that is a clue that it is working! On the 6th night I got finally got some rest. I was taking Lunesta 1.5mgs at this time, too.

I did notice results on the second day though. The burning pain in my shins and ankles left. I have had this just once since, a couple of weeks ago in fact, it went away and hasn't returned.

I have a lot less muscle sorness and all over body stiffness and this has been since the 2nd week. I am going to the chiropractor less and I do adjust quickly when I do go, about once a month now. Before it could be as many as 2x's a week at times. I have had less trigger point release done, also. Another improvement has been my digestion. I was very lactose intolerant and now I can eat dairy in moderation. Also, i have an arthritic cyst in my left ankle joint, according to an MRI and seeing a foot/ankle specialist. This was giving me a lot of pain so that I could hardly walk at times and could only wear certain style shoes. That pain is GONE now and i am able to wear all of the shoes in my closet! What a relief that has been.

Overall, I am happy with LDN and will probably increase to 4.5mgs in 2 months, when I need a new script. My doctor has prescribed it for another of his patients now. He was really amazed when he looked up the LDN site and saw what all LDN can help with.

I have done the antibiotic protocol for mycoplasma infection about 12 years ago and it was very successful. It was in 2000 that the FMS/MPS hit me--like a ton of bricks so to speak!

I do take other supplements also that I feel benefit the FMS symptoms. I also eat all starches, white flour and sugar in moderation. I also am a believer in the acid/alkaline theory. i drink a tea that is alkaline to help balance the acid foods. I notice a big difference in soreness when I eat too many acid foods--and then drink the alkaline tea to balance. So, I still have to do other things besides the LDN.

I think it takes a lot of research to find out what works for others and then do what will work for me. i lead a very normal life which is quite pain free with my routine.

Feel free to email me direct if you would like to talk more or need support. I wish you much success with LDN and lots of improvement such as i have had.

Hugs, Elaine

[Guest guest]

Elaine,

Can you give more info on the acid/alkaline theory?

I am really trying to learn as much as possible.

Thanks,

>

> Hi Liz,

>  

> I have been on LDN now going into my 4th month.  I am taking 3.5mgs

at night.  The first 5 nights were quite rough--not much sleep and

the vivid dreams.  I think that is a clue that it is working!  On the

6th night I got finally got some rest.  I was taking Lunesta 1.5mgs

at this time, too..

>  

> I did notice results on the second day though.  The burning pain in

my shins and ankles left.  I have had this just once since, a couple

of weeks ago in fact, it went away and hasn't returned.

>  

> I have a lot less muscle sorness and all over body stiffness and

this has been since the 2nd week.  I am going to the chiropractor

less and I do adjust quickly when I do go, about once a month now. 

Before it could be as many as 2x's a week at times.  I have had less

trigger point release done, also. Another improvement has been my

digestion.  I was very lactose intolerant and now I can eat dairy in

moderation.  Also, i have an arthritic cyst in my left ankle joint,

according to an MRI and seeing a foot/ankle specialist.  This was

giving me a lot of pain so that I could hardly walk at times and

could only wear certain style shoes.  That pain is GONE now and i am

able to wear all of the shoes in my closet!  What a relief that has

been. 

> Overall, I am happy with LDN and will probably increase to 4.5mgs

in 2 months, when I need a new script.  My doctor has prescribed it

for another of his patients now.  He was really amazed when he looked

up the LDN site and saw what all LDN can help with.

>  

> I have done the antibiotic protocol for mycoplasma infection about

12 years ago and it was very successful.  It was in 2000 that the

FMS/MPS hit me--like a ton of bricks so to speak!

>  

> I do take other supplements also that I feel benefit the FMS

symptoms.  I also eat all starches, white flour and sugar in

moderation.  I also am a believer in the acid/alkaline theory.  i

drink a tea that is alkaline to help balance the acid foods.  I

notice a big difference in soreness when I eat too many acid foods--

and then drink the alkaline tea to balance.  So, I still have to do

other things besides the LDN.

>  

> I think it takes a lot of research to find out what works for

others and then do what will work for me.  i lead a very normal life

which is quite pain free with my routine.

>  

> Feel free to email me direct if you would like to talk more or need

support..  I wish you much success with LDN and lots of improvement

such as i have had.

>  

> Hugs, Elaine

>

[Guest guest]

be cautioned about klonopin.. it is the beast of benzos and i took it

for tremor and ptsd.. the tolerance withdrawals and withdrawals from

it are insane... i shoulda died. so, if u decide to go off it... w/d

slooooooowly.

i wont ever take a benzo again for tremor... highly addictive on a

physical and psych level.

~MO

> >

> > 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

> >

>

>

>  

>  

> Skip's Compounding Pharmacy

>  

> LDN Website

>

[Guest guest]

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.

[Guest guest]

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.

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.6.16/1651 - Release Date: 9/4/2008 6:57 AM

[Guest guest]

glyconutrients can be used together with ldn

>

> 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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>

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.169 / Virus Database: 270.6.16/1651 - Release Date:

9/4/2008 6:57 AM

>