Cure Together Survey Summary

[WillowJ]

Can you possibly provide me with a link to the studies on fibro where they are having success treating it? thx

the antiviral study looks like it might be the same thing you already tried:
http://simmaronresearch.com/2013/12/big-antiviral-trial-era-fibromyalgia/

the other things are word of mouth, I think. I forgot to add massage therapy--some people find if they get the right therapist, this helps reduce the pain.

The problem is that nobody can tell you what will work for you.

It sounds like you are having a rough time. Sorry that I can't be of more help, and I hope things get better.

 

[saint]

Thanks for the link. Yes, I'm on Dr. P's protocol. He said about 4 months - that I would go down before going up. I have surgery coming up & don't feel I'm ready for - but took me too long to put it all together - especially with limited energy, so I'm trying what I can to build my system up.

What is weird about all this is that no one thing seems to work for everybody.

I stay in my pj's all day - rarely go out - so don't think I could get to massage therapist; at least regularly. I do get good days here & there where I feel normal again - then I go do things & wind up in bed the next day. I can check insurance plan to see if they cover a massage therapist coming to house. I use a home-care doctor service for meds.

Thanks for your kind words. I went through a really bad time switching off pain meds to go on LDN - as well as doing the Famvir. Felt like someone was squeezing my heart, and I couldn't breathe. Couldn't move hardly. Friday couldn't get up to eat or get water. Daughter came & brought me bowl of oatmeal,in morning & I scared her; but couldn't even get enough energy to eat it & was too sick to eat. Fought through that. Missed a bbq (bu that's not unusual for me - I don't do anything.) Feel better today, thank God.

At least I feel like I have somewhere to go and share my experiences with others who may understand. I've heard all the comments "you just have to get out and exercise" blah blah blah.

My pastor has heard me cry the blues to him so much he doesn't answer my calls anymore! And I sit here laughing about it - believe it or not.

I'll share this, just in case it may help somebody: Someone - may be you - gave me info about fibro people having SIBO - so I took a large dose of buffered vitamin C. It cleaned me out (Dr. Myhill recommends for SIBO) Don't know if that did it, or it's the end of the withdrawal, but I feel better today. Not great - but better.

 

[saint]

Thanks for that info. I was so tired last night I didn't even measure the dose, so probably took too much.

Did it work for you? Did anything work for you?

 

[liverock]

Thanks very much for that information. I immediately emailed the links to my doctor and asked for a test for it. I have been on so many antibiotics, I don't know how anything could be left alive in me. Since my immune system was down (my blood tests showed a 2 - dr. said I have almost no immune system & no adrenal function).

I kept getting sore throats from germs anyone who entered my house brought in. I use an air cleaner, but had to go on repeated doses of antibiotics. That was one of the reasons I asked my dr. to go on LDN - it shoots your immune system up, but it isn't providing ANY pain relief. Radio mentioned SIBO several times & I recall Dr. Myhill writing about & recommending to disinfect with large doses of vitamin C.

I just got an order in the other day of powdered vitamin C & I'll try that until I hear back from my doctor.

I emailed Dr. Nicholson and he sent me an attachment about the role of infections in fibromyalgia. It was very technical & I am not at my best right now.

Do you know if there are other natural things that work against SIBO, or must they be treated by antibiotics? Maybe the antibiotics I was on don't kill the particular pathogens in SIBO.

I have been on a completely gluten-free diet.

I would appreciate any more information. I think I bit off more than I could chew with doing the famvir/ celebrex, then going off pain meds to try LDN. I read such glowing things about LDN I thought "that" was my answer. So sick of blind alleys.

@saint LDN is supposed to help get rid of SIBO what exact dosage are taking?
What are your bowel symptoms? Are you taking any other drugs?

If you have taken a lot of antibiotics in the past your gut flora will have been substantially lowered. Your leaky gut is responsible for the low immune system and lowered adrenal glands. NSAID's painkillers will also damage the gut wall.

You need to get rid of the SIBO and repair the gut wall after which repopulate the gut flora with probiotics such as Swansons Ultra Probiotic Complex

Bovine colostrum and zinc carnosine are supplements which can help with leaky gut. You can get these from iherb.com but you need to sort out the LDN dosage with your doctor first.

 

[saint]

Thanks for your response. I didn't know LDN was supposed to get rid of SIBO. The label on the bottle says "Take 1-3 ml by mouth at bedtime when needed." The bowel symptoms after taking the powdered vitamin C was diarrhea. Prior to that I did get a little bound up from the meds, but a bowl of gluten-free oatmeal a day was keeping me pretty regular. So would that mean I wouldn't have to go on the antibiotic they use for SIBO?

I called a gastroenterologist yesterday, and they didn't know what SIBO was. I asked her if they could do the hydrogen breath test, so waiting for a call-back. I researched & read enteric coated peppermint caps work for SIBO, so got my husband to order me some last night.

I do have problems with my stomach. I take bismuth a lot, and drink the real ginger ale - with ginger in it.

I was on 15 mg. morphine, which I just went off of to trial the LDN. I am also on Neurontin, clonazepam, and amitryptyline at night to help me sleep. Also, flucozanole; blood tested positive for candida. Melatonin does not work for me. Bloodwork also showed "past exposure to lymes". Tests showed parvo, and ebv. Had mono at 16. (I can't remember what I did yesterday sometimes, but I remember exactly when I got mono: I was 16 when my sister & I went to a dance in Philly one night, and a car pulled up and a couple of guys got out; without saying a word, this guy grabbed me & kissed me. I came down with a terrible case of mono after that.

Had to laugh at that. I thought: wouldn't that be something, if I came across the guy who did that to me on these forums all those years ago! Boy I'd give him h*ll ! Sorry - had to pause to laugh or I'd cry over the pain in my neck.

I'm doing the Dr. Pridgen protocol with Famvir & Celebrex. I did worry about the celebrex because I know NSAIDs are bad for gut.

The fibro doc has me on natural cortisol and thyroid, and 100 mg. pregnenolone at night.

I didn't put much emphasis on probiotics before, because I couldn't tolerate them, but after taking repeated doses of antibiotics I broke out in eczema all over my face and neck a few months ago! I went to the hospital with gauze taped over to cover it; very embarrassing. I researched & read that eczema could be caused by leaky gut, or lack of probiotics. So that was a huge red flag.

I had always reacted badly to probiotics but bit the bullet and bought BioKult, probiotic pearls, and Culterelle, which is supposed to help heal a leaky gut. Of course my hyper-system reacted (wake up every morning with eyes swollen & congestion). Then I read something on this forum about low-histamine probiotics, so I bought ProBiota. I'm taking all 3 of them now.

Leaky gut causes low-immune & adrenal function? Okay - now maybe some things starting to make sense.

I tried bovine colostrum awhile ago but was allergic to. I've been taking zinc & vitamin A & Collixen for leaky gut, and will order some zinc-carnosine.

Thanks very much for your response. With all I've told you, if you have any more ideas, I am very open to any suggestions.

 

[liverock]

@saint If your still taking LDN you should take the lowest dosage and titer up slowly. Taking higher dosages of supplements too quickly can cause herxing. You need the lactulose test to determine whether your gut is clear of SIBO or whether you need antibiotics.
http://www.positivehealth.com/article/colon-health/natural-approaches-to-leaky-gut

Stomach acid is sometimes low in fibro and you can test yourself with baking soda.
If the test is low you can get an HCL(stomach acid)supplement at iherb.com.

VERY IMPORTANT-IF YOU START DOSING WITH THIS SUPPLEMENT YOU MUST FOLLOW THE PROCEDURE FOR DOSING EXACTLY AS OUTLINED IN THESE ARTICLES!

http://candidaplan.com/blog/699/hydrochloric-acid-and-health/

http://scdlifestyle.com/2012/03/how-to-supplement-with-betaine-hcl-for-low-stomach-acid/

http://www.iherb.com/Now-Foods-Betaine-HCI-648-mg-120-Capsules/398


.

 

[manna]

inversion of body position.

excuse if obvious or already explained but anyone know exactly, or roughly, what this means?

is it lying flat on bench thingy with either head or feet higher than the rest of the body? if so, head or feet higher? thanks

 

[liverock]

excuse if obvious or already explained but anyone know exactly, or roughly, what this means?

is it lying flat on bench thingy with either head or feet higher than the rest of the body? if so, head or feet higher? thanks

Usually done by a special body inverter which you strap yourself in.

http://www.amazon.com/Body-Champ-IT8070-Inversion-Therapy/dp/B001IBIQ5Q

 

[SDSue]

@slaydragon That survey mirrors my experience quite accurately. What I find sad is the negative response to SSRI's and other antidepressants - simply because I'm guessing a huge percentage of us have been offered those as a first treatment (and gotten worse as a result).

Oh, for reliable biomarkers that can finally render surveys like this credible in the eyes of mainstream medicine!!!

 

[manna]

Usually done by a special body inverter which you strap yourself in.

http://www.amazon.com/Body-Champ-IT8070-Inversion-Therapy/dp/B001IBIQ5Q

thanks for that. i did google it but without "therapy" and found nowt. cheers.
---
i thought it might be similar to "inclined bed therapy", which it probably is only thats feet lower, not higher, than head. surprising as id have assumed that having your head lower might increase, or aggrivate, neuro-inflamation. maybe its the length of time its done, being not for hours on end, and the fact its loosens your spine so cerebral odema is not possible. spine is definitely important.

and that search turned up this, which ive seen similar before and could be worth a try
Spine-Worx Back Realignment Device http://www.amazon.com/Spineworx-SW1..._sim_sg_2?ie=UTF8&refRID=1VM4VDF8ADE3PJMAGA6Q

helpfull or harmfull is probably not always easy to discern. its not a bad list/survey though, all in all, ticks a few boxes id have expected it to.

 

[saint]

@saint If your still taking LDN you should take the lowest dosage and titer up slowly. Taking higher dosages of supplements too quickly can cause herxing. You need the lactulose test to determine whether your gut is clear of SIBO or whether you need antibiotics.
http://www.positivehealth.com/article/colon-health/natural-approaches-to-leaky-gut

Stomach acid is sometimes low in fibro and you can test yourself with baking soda.
If the test is low you can get an HCL(stomach acid)supplement at iherb.com.

VERY IMPORTANT-IF YOU START DOSING WITH THIS SUPPLEMENT YOU MUST FOLLOW THE PROCEDURE FOR DOSING EXACTLY AS OUTLINED IN THESE ARTICLES!

http://candidaplan.com/blog/699/hydrochloric-acid-and-health/

http://scdlifestyle.com/2012/03/how-to-supplement-with-betaine-hcl-for-low-stomach-acid/

http://www.iherb.com/Now-Foods-Betaine-HCI-648-mg-120-Capsules/398


.

Keith,

Thanks for that. The bottle of LDN says 1-3 ml so I'll try cutting it down. It's also disrupting my sleep, even though I take meds to make me sleep.

It's been pretty rough going without pain meds. My neck hurt really bad. Radio told me to use ice & have been doing that. Also, the nerve damage in my hip that dr. did was flaring like crazy. Don't know if it's rebound effect from discontinuing morphine or LDN doing it. I get very weary & overwhelmed trying to figure this stuff out.

I asked fibro doc to run me the leaky gut test & they dismissed me saying "it was very involved". He's a good dr. in many ways, but I'm not getting all the help I really need.

I already ate this morning, so I'll do the baking soda burp test tomorrow. I ran out of digestive enzymes, and took the HCL that arrived yesterday with breakfast. My stomach is always pretty touchy, but I took magnesium glycinate with it, so that should buffer any effects.

The one link says to use HCL with pepsin - but the bottle I bought is straight HCL. Do you think that will work well enough?

Interesting article. I already know I have candida because fibro doc emailed me lab slip for bloodwork. When I went to lab, in my car, before I went in, I checked off to have a candida test run (as well as lymes, parvo & ebv). The last time I tampered with the lab slip, they refused to run any of my bloodwork (used blue ink pen when docs office printout was in black). Switched to different lab & all I had with me was a blue ink pen again! So I rolled the dice and checked off to have the above tests run.

Thank God, the guy didn't question me. Good thing I did it: showed I did have candida, and "past lyme exposure" (guess that means I overcame it.) and ebv & parvo were high.

He told me that "celebrex has no antiviral properties" and wrote script for Valcyte. So who do you listen to???

I had suspected candida so got home-care doc to put me on flucozanole. Fibro doc raised the dosage when he read my bloodwork.

The article from link you gave rang a bell because when I started with stomach problems years back (and they were bad) doctor put me on Nexium.

The one link said probiotics & cultured vegetables can cause histamine reactions - which I know I'm getting because I wake up every morning with eyes swollen. But I read that in order to HEAL leaky gut, you need probiotics. Very confusing.

The NSAID on the Doc Pridgen protocol is worrying me. I know that NSAIDS are always bad for gut health- so haven't made a decision yet to continue on that.

I took more powdered vitamin C to continue killing any SIBO. Also ordered enteric coated peppermint because I read that kills it too.

Any of your thoughts on this would be welcome.