low dose naltrexone

[geofran]

Has anyone tried LDN for their neuro symptoms?  Two of the alternative MDs I went to prescribed it for me.  I have taken it off and on for two years (mostly off).  I have found it to make me feel worse for awhile but then when I stop it I feel a big improvement.  So I don't take it until I have a really bad  flare.  It is supposed to be an immune system modulator.

Georgia

[MrsAristotle]

Oh dear me and you are too alike lol.

I too have sensitivity to chemicals from medication.

Pethaden.  Put me on a trip for 2 days lol
Mogadon.  Saw large flying bats
Penicillin.   allergic
Aspirin.      bleed
Erytomycin.  Took for years then last year suddenly became allergic
2 antibiotics for UTI kicked off massive nervous system problems. I will note that on the information it said ... DO NOT TAKE if you have a nervous system problem....what are doctors thinking.

I find one paracetamol makes me sleep for hours.
Gapapentin spaced me out felt ill
Amytriptyline hated the feeling in the morning after only 1 small tablet lol.

Oh georgia did you know that  H-Pylori can kick off auto immune problems in the system. FACT not fiction....

Did the shingles in your leg have blisters??? or was it assumed it was shingles because it was nerve pain?

I had this awful pain in my ribs around the shingle line and they thought it could have been shingles but then I have had it about 4 times now really bad so the GP has put it down to neuralgia.....

DID the antibiotics hurt your eyes or could it have been your eyes had problems and the antibiotics were just a coincidence. Have you ever had  visually evoked potential test?

I also found that people suffering with lupus can be sensitive to antibiotics.....in essence some drugs can trigger lupus......not saying you have lupus no way, but it just shows you how drugs we take can upset our systems enough to wake something else up.

I am slightly phobic to taking pain killers as both my grandparents died with stomach problems direct result of taking too many pain killing drugs......

My grand father had neuropathy for years and was in pain and had poor mobility and ulcers in his legs. Before he died he was diagnosed finally with Parkinsons and put on drugs for this which saw him spiral downwards.....

My grand mother was diagnosed with RA and she had hip replacements and the pain was so bad she took loads of pain medication and again she died of stomach problems as a direct result.

SO you can see why I am a bit concerned about taking these drugs lol.

Why do you fear your symptoms? The more you are anxious the more you will feel poo. I have had the worse symptoms now for 4 years even so bad I was taken into the doctors for a heart ECG as I thought I was having a heart attack,,,,,, constricted pain around chest and ribs.................

Just make friends with your symptoms they come and they go, some leave lasting impressions on us and others are just like acquaintenances that pass in the night lol.......

Sometimes I sit quietly i think ooooooooooer I havent had you for a while lol. Where you been then.....lol.....

I kind of just accept them all now and put up with them to a certain degree.

I think the worse things for me are my hearing, my bowels and my bladdar.....I can cope with all the sensory stuff and i know that if I have a horrible pain in my shin today it will usually be gone in 2 days.....

Have a look at  H-Pylori and auto immune. When I read your post it shreeks out auto immune problem.......

Hugs from Maria.xxx

[geofran]

Thank you so much for your response.  
Yes, the LDN does make me feel worse for about three weeks so I stop it.....then I get this surge of feeling almost normal for a couple of weeks....and then I'm back to hurting again.  It is very strange.  The other thing is, I feel like I don't sleep when I am on it because it makes you DREAM so vividly.  So when I am desperate I'll start it up again.   But the alt.drs think it is great.  They said you have to give it a good 60days.  I have been on that web site and have the book "The Promise of Low Dose Naltrexone".  It all sounds so wonderful.  I just wish I could take it.  

After my natural menopause I was put on HRT by my gyno but it wasn't what they now have(bioidentical hormones).  I felt bloated all the time and gained weight.  For the first time in my life I was overweight.  Then the scare came out about HRT being bad for breast and heart and I was taken off.  Next they wanted me to take Actonel for my bones.  That did not agree with me either.  This body of mine does not like meds(chemicals).LOL.
So I think the doctors get annoyed with me.

Looking back medical intervention has played havoc with me:
     Antibiotics for Salmonella= Postural vertigo (damaged left ear)
     Antidepressant after Mom died=kept saying it was hurting my eyes..ended up with a macular hole in right eye and needed surgery to close.
     Hysterectomy=benign findings
     Shingles on left leg=Steroid epidural...start of neuro symptoms
      Treatment for H-Pylori=Full blown neuro symptoms
So I am afraid of doctors and their meds.

I am doing the best I can with my condition and so grateful to you and all the posters in this group for understanding.  I wish there was something that we could take to make us feel better.  Your advice of "enjoy the good days and put up with the bad" is so true and I try to remember that.  Now if I can only keep the fear at bay on the bad days I'll be ok.LOL
Do you have any words of wisdom on the anxiety this causes?

I hope you have only good days!!!

It has taken awhile to type this....the trick or treaters have been coming....so cute...
Love to all,
Georgia


    

[MrsAristotle]

the problem with low dose  naltrexone is there are no real studies been done to prove its affect .........

I know one person who started to take it and she said it took a while before she noted any affects about 6 months i think my memory isnt good any more.

IF it makes you feel better after taking it could it mean that the drug makes you feel worse when you are taking it if you get my meaning? Sorry not very clear even in my head lol.

This is a good web site all about it.

http://www.lowdosenaltrexone.org/index.htm#What_is_low_dose_naltrexone

Oh Georgia i have to apologise as I missed something you asked me on the other thread about hormone replacement.

Well its like this. When I was 27ish I had my hysterectomy (full), my gyneocologist at the time was not impressed with HRT as she said it was not researched enough and she advised me against it.

She also said that if we leave our body alone it has natural hormones that will be created by other glands in our body as I was still young so I thought well she knows what she is talking about lol.

I did have a terrible year going through surgical menopause but over the years I have hormone level tests done and they have always been NORMAL so there you go.....

So at your age having a hysterectomy late even though you went through natural menopause you would probably now have depleted hormones as they might not make it lol if you get my drift, so I would ask your GP if you could have a hormone test to see if you need therapy now.....

Oh dear I hope all that made sense, I am all typed out this morning lol and my brain is thinking of making naughty children into frogs tonight LOL.......xxxx big hugs. And have a lovely halloween.xx

[jibjen]

Hello,

I am sorry I can not answer, (not on meds for anything yet but migraines) but I hope someone will pop in have some insight ;o)

Jibs