Need Advice

September 9, 2010

Julee-- In addition to what Zahavi has shared, I would say that it's likely

that if you weren't taking LDN your gut issues could be far worse. Do look

at candida right away. Any time we take pharma antibiotics candida must be

addressed, and you no doubt had to take antibiotics with your pelvic

infection, yes?

If you're not already, you should have massive probiotic intake. Get the

highest quality capsules or powder (the powder is quite palatable and

cheaper per dose) you can afford, the larger the number of organisms and

the more different kinds the better, take with meals and between meals

(with dairy is best). In addition, drink kefir. Kefir is like a liquid

yogurt, except the probiotic organisms are slightly different, and they

more readily recolonize the gut than yogurt organisms do. So kefir is the

preferred food for replenishment. Drink a cup of kefir at least twice a

day, between meals and before bed (more is better). It's ok to get flavored

kefir, but do make sure it's guaranteed alive, as some conventional grocery

store brands are not.

Taking the probiotics WITH meals helps digest the meal itself. Taking it

between meals helps recolonize the gut.

You can also take all different kinds of other probiotic foods, such as

live sauerkraut, kombucha, live pickles, live kim chee, yogurt, coconut

milk kefir, etc etc. Just keep the dairy kefir separate from the others

and between meals to get the most out of it. If you're lactose intolerant,

you may be able to enjoy fermented dairy (kefir, yogurt) even if you can't

do milk. If you can't do any dairy, look for the coconut milk kefir

available at natural food stores.

My husband had to take antibiotics recently for an abscessed tooth, and it

wasn't until 2 weeks later that the gut reaction to the antibiotics wiping

out his good gut probiotics kicked in. I had been overwhelmed with my own

problems and totally forgot to get him on probiotics. He had extreme lower

abdomen pain and diarrhea, just as you describe. In addition, science has

finally figured out that the function of the appendix is that it holds a

reserve of probiotics and re-seeds the gut when its probiotic community is

wiped out. You've now had yours out, so you're even more in need of

probiotics than someone with theirs still. You may want to consider

lifelong probiotic support.

If you've already done probiotics at this level, then you need to look to

other issues. But if you haven't done this, start here, asap.

with best wishes,

--

At 08:35 AM 9/9/2010, you wrote:

>I've been taking 4.5 mgs. LDN for 1 year for my Autoimmune Hepatitis. 5

>months ago I got a terrible pelvic infection which required surgery. I

>had a complete hysterectomy, an appendectomy, and bowel repair.

>

>I've been feeling great, until yesterday. The lower pelvic pain and

>diahria are back. I had a CT scan and was told that everything is intact

>and there are no masses or adhesions. I'm going to see my doctor

>today. I'm thinking I probably have Crohns or obviously something that is

>causing inflamation and discomfort in my intestinal tract.

>

>If that is that case what do I do regarding my LDN? Its been working for

>my Autimmune Hep, but doesn't seem to be helping my imflamitory bowel

>issues. I'm pretty sure the docs will prescribe either steroids,

>antiobiotics, or both.

>

>I would really appreciate any advice or suggestions before I see the doctor.

>

>Thanks,

>Julee

~~~ There is no way to peace; peace is the way ~~~~

--A.J. Muste

October 3, 2010

have you tried the ginger ale? it is pretty good stuff. And your right your going to be paying for it for about 3 or 4 days. You have to make sure and get lots of water in the day of your shot and keep pushing it. Water Water Water makes your sides less.

From: trudykinsey@... <trudykinsey@...>Subject: [ ] Need advice"Hcv" < >Date: Sunday, September 26, 2010, 12:17 AM

Well, it seems the awful naseau has struck. With every passing hour I am getting more naseated. All I can do is sip a bit at a time. I'm afraid if I don't drink enough it will just get worse. My bigest fear is that I will throw up the Riba pills. Drinking enough to get all my meds down makes me so ill. I know I need to start eating smaller meals, but I still have my " healthy " appetite. That is probably contributing to the nasuea, eating too much at a time. I have to figure this out cause I can't stay sick like this. All I have been able to drink is small sips of Sprite...been sipping a 20 ounce all day. Tommorrow will be hell cause I haven't been able to get my fluids down. Quess I'm just whiney tonight LoL.... God, I hate being nasueated. I would gladly just go ahead and throw up except for the Riba pills..FYI I haven't mentioned it but my tremor and stutter is getting worse. Every body at my little surprise birthday dinner was so nice; I

only spoke once and couldn't get the words out, wasn't even sure what the words were ! They took it in stride...but I didn't try again. I'm getting pretty good a keeping quiet and just observing. Hubby is used to me be a magpie and constant chatter. Not anymore. I see the nuerologist in a week.Anyway, when I first joined yall here there were several suggestions of combatting the nausea... Please refesh me cause I don't remember. Didn't sombody say Junior Mints?? Or ginger cookies ?? http://facebook.com/people/andTrudy-Kinsey/1340460877 ""A well- behaved woman never made history"...Mae Westhttp://oktravels.wordpress.comhttp://allrecipes.com/cook/TrudyK/profile.aspx

October 11, 2010

Hi, Sheryl. Welcome!From what I've read about LDN and MS, LDN sounds likely to help you quite a lot.I don't have MS (haven't been seen by a neurologist anyway), but I've had chronic fatigue and progressive cognitive decline since 1992. I take B-12, which I noticed in your list. How much of the other B vitamins do you take?

I've read of no side effects to B-12, yet supplementing with anything (including B-12) can speed up some reactions (as one would hope, and that can increase the need for other " ingredients " in those reactions -- which could be anything. I remembered this lately after taking more B-12 than ever before and feeling vaguely " depleted " after an initial high. So just tonight I bought some " B complex, " with B vitamins in some calculated ratio; perhaps you might want to try that if you're not already.

Has one integrative doctor prescribed all 20 of those things -- or all of those meds? The more things you take, and the more " schools of thought " you draw them from, the less likely that some doc will understand all of them well. And the odds of unpredicted interactions go up. With 20 meds or supps, there are 20*20 = 400 possible two-way interactions, and this isn't counting 3-way (or more complex) interactions. (Maybe I should shut up; I don't want to scare you, maybe most people take even more things than 20, and the body is pretty resilient. It's just that I am a computer guy, trained to measure the complexity of interactions between things.) (Does anyone know a website on which one can enter a list of meds and supplements, and see a report of the most likely interations? If there isn't one, that's a project I'd like to tackle. One could base this program on a biochemical pathways chart.)

I can't comment on the rest of your list, but I'm sure others here will. I even suspect some of them are doctors, nutritionists, and/or biochemists.If you can name your city or metropolitan area or the nearest one, perhaps someone here will recommend a doctor who is savvy with LDN, in case yours doesn't work out. I'm not sure whether I'll return to the doc who prescribed my LDN, but I'm glad I saw him and got started on the stuff: while I look for another doc, I'm already benefitting from LDN.

I've often felt bad enough that I hoped to die in my sleep; this has led me to eat foods that made my heart rhythm go erratic. I hope you feel better soon.I am new to the group, too. Joining this group about a week ago has already encouraged me more than I ever expected and I hope it encourages you as well. (Perhaps it works out best if one doesn't expect much, though.)

LDN already has made me feel better, too, and the dose is so small that at least it shouldn't have any toxicity.I'm rooting for you, Sheryl.Dave G.

On Sun, Oct 10, 2010 at 10:01 PM, Sheryl Spiegelberg <grammabatty@...> wrote:

I am new to the group & about to see a Dr. for a script for LDN. I have pretty much given up the will to fight. I was DX in 1991 with RRMS. I also have gut problems,asthma,insomnia, & EXTREME fatigue.I am going to list the meds I am on to see if anyone can see a problem with any of them.I am 54 years old & pray I won't wake up some morning. NO I do not want to commit suicide, I just feel so bad I hope to just go in my sleep.

1.Plant Enzymes(Stomach)2.Yeast Releaf(Stomach)3.Guggul(Cholesterol)

4.Papaya Enzyme(Stomach)5.Red Yeast Rice(Cholesterol)6.Fish,Flaxseed, & Borage Oil(Cholesterol)

7.Nexium(Stomach)8.Vitamin B-129.Bella-Donna Tabs(Stomach)

10.Lunesta 3MG.(Insomnia)11.Vesicare 10 MG.(Bladder Control)12.Gabapentin 600 MG.(Nerve Pain)

13.Aloe MaxLax(Constipation)14.Chloroxygen(Oxygen to my Red Blood cells)15.Provigil 200 MG.(Fatigue)

16.Adderall XR 30 Mg.(Fatigue)17.Spiriva(Asthma)18.Pro-air Inhaler(Asthma)

19.Probiotic(Stomach20.5-HTP 200 MG.

Any help with this list of meds PLEASE !!!!!!! Sheryl

October 11, 2010

Hello, my son had a grand mal seizure after being taken off Clonazepam too quickly. The doctors think he also had 6 smaller type seizures within 1 hour of the grand mal. This was just over 1 month ago. Just prior to the seizures he had started LDN and then stopped it for about 10 days and then resumed taking it. He started at 1.5 mg and then 2 mg and just now starting 3 mg. The concern I have is that every day he thinks he is " waking up " and seeing things he has not seen in years and that everything is new or the colours have been changed and his short term memory is shot. The Neuros don't know why this is happening. It has not improved much over a 5 week period. Does anyone think this could have anything to do with LDN? Or has anyone had a similar experience? Thank you!

October 11, 2010

That's quite a lot of stuff you are taking, have you asked anyone to monitor the reactions you may get with such a mix? I think I would have to rethink a lot of that and stick to the drugs you really need like the sprivia etc. Get someone to go over the way they could react with each other, and get rid of what is not necessary and start again..... Just my thoughts, as obviously they don't seem to be helping you.....

God Bless

Celia

October 11, 2010

bev, how old is your son? ~lt, oregon

http://moineauenfrance.blogspot.com

October 12, 2010

Sheryl,

Go to www.drugs.com. You can create an account and enter all your drugs and

supplements. Then you can (click a button) and check for dangers and cross

reactions.

I'm sorry your are having such trouble. It sucks to try so hard to make

yourself well, and still be stuck feeling crappy.

Good Luck,

Jenn

> I am new to the group & about to see a Dr. for a script for LDN. I have

> pretty much given up the will to fight. I was DX in 1991 with RRMS. I also

> have gut problems,asthma,insomnia, & EXTREME fatigue.I am going to list the

> meds I am on to see if anyone can see a problem with any of them.I am 54

> years old & pray I won't wake up some morning. NO I do not want to commit

> suicide, I just feel so bad I hope to just go in my sleep....

November 23, 2010

- Absolutely talk to your surgeon!Â Put your fears to rest.

Debi (2 dislocations & still deciding if I should do a revision or not)

From: marywaspe2000 <mary.waspe@...>

Subject: need advice

Joint Replacement

Date: Tuesday, November 23, 2010, 3:11 PM

Â

Hi Every-one.

I am 2 weeks today post op from my revision hip replacement.

Last night I had to go to my daughters home only for a few hours as it was my

grand daughters 5th birthday.

I was sitting on a high dinning room chair with a cushion underneath, and about

an hour into the evening the hip felt like it was going to pop out, I sort of

wriggled a bit and it went back in.

there was no pain, where as when I dislocated it it was excrutiating.

is this because the muscles have been cut and there isn't really anything there

holding it in?

it all feels okay now do I need to ring the surgeon who is 3 hours away, or wait

and see and tell him at my 6 week post op check.?

I was really scared when it happened, may be I just did something I shouldn't

have.

thanks mary x

November 23, 2010

Thanks ! I know the odds!Â I am leaning towards replacement-

Â

Good luck to you.

Debi

November 23, 2010

You too Debi, keep me posted. Would this be a 2nd revision for you? And do

you have a surgeon you are happy with.

As I didn't go back to the original treating surgeon,I had to make quite a

quick decision as to who to see but glad of the one I made.

When I went to theatre the 4 times last year for my shoulder, I asked all

the nurses and wards men in theatre who they would go to

If they had a hip issue and they all said Malisano, no one mentioned any

other name. So that was it.

x

ï»¿

-- Re: need advice

Thanks ! I know the odds! I am leaning towards replacement-

Good luck to you.

Debi

February 28, 2011

I am really at a point where I feel a bit overwhelmed. I would like some input

from you all. I have an 11 month old son who I believe is mercury toxic and has

multiple food intolerances.

A bit of history on us: I am mercury toxic. I had 8 mercury fillings removed

in Jan of 2009. I was feeling so good after removal that my husband and I

decided we would like to have another child. I got pregnant in July of 2009

(just 6 months after amalgam removal). I had a semi-difficult pregnancy. I was

sick most of the pregnancy and also put on bedrest at 33 weeks for preterm

labor. When he was born they tested the placenta and found multiple infarctions

which at any time could have caused problems, preterm labor or even death. I

was induced to have him at 38w 4d due to a high stress test. He was born

healthy and weighed 6 lb 11 oz.

I breastfed him for 2 months, but he was a VERY colicky baby. He never seemed

happy. I have so many food intolerances that I gave up long ago trying to

figure out what they were and just eat what I want. (terrible I know) So, I

think he might have been reacting to things I was eating. We quit breastfeeding

and started feeding him a homemade goat milk formula at 2 months of age. He did

really well for many months, until at about 5 months we started to introduce

foods. Each time we would introduce a new food he would get so congested he

would start vomiting. It has been downhill from there.

At 9 months of age we put him on Alimentum formula and he has started to gain

weight and do much better. He still cannot tolerate any food. We have tried

rice, oatmeal, bananas, pears, peas, homemade pureed chicken, sweet potatoes,

and squash. Each time he eats he gets a diaper rash, red cheeks, and terrible

congestion.

He tested positive on skin prick test to a sensitivity to Soy and that was it.

THey only tested him for the top 6 food allergies and top 6 environmental

allergies and goat milk. He did not test positive to milk, but has done so much

better on the formula.

He had an endoscopy at 10 months that was negative. All biopsies were normal

and it looks like he does not have reflux or such.

He is going to be 1 in March. I just don't know where to go from here. Do you

think a RAST test would indicate anything at this time. Do you think I should

start a low-dose chelation on him? Any advice would be appreciated. If you

have any additional questions, plesae ask. I really need some direction right

now. Thank you!!

~

February 28, 2011

What about a hair test to try and define toxins? How to in the files.

>

> I am really at a point where I feel a bit overwhelmed. I would like some

input from you all. I have an 11 month old son who I believe is mercury toxic

and has multiple food intolerances.

>

> A bit of history on us: I am mercury toxic. I had 8 mercury fillings removed

in Jan of 2009. I was feeling so good after removal that my husband and I

decided we would like to have another child. I got pregnant in July of 2009

(just 6 months after amalgam removal). I had a semi-difficult pregnancy. I was

sick most of the pregnancy and also put on bedrest at 33 weeks for preterm

labor. When he was born they tested the placenta and found multiple infarctions

which at any time could have caused problems, preterm labor or even death. I

was induced to have him at 38w 4d due to a high stress test. He was born

healthy and weighed 6 lb 11 oz.

>

> I breastfed him for 2 months, but he was a VERY colicky baby. He never seemed

happy. I have so many food intolerances that I gave up long ago trying to

figure out what they were and just eat what I want. (terrible I know) So, I

think he might have been reacting to things I was eating. We quit breastfeeding

and started feeding him a homemade goat milk formula at 2 months of age. He did

really well for many months, until at about 5 months we started to introduce

foods. Each time we would introduce a new food he would get so congested he

would start vomiting. It has been downhill from there.

>

> At 9 months of age we put him on Alimentum formula and he has started to gain

weight and do much better. He still cannot tolerate any food. We have tried

rice, oatmeal, bananas, pears, peas, homemade pureed chicken, sweet potatoes,

and squash. Each time he eats he gets a diaper rash, red cheeks, and terrible

congestion.

>

> He tested positive on skin prick test to a sensitivity to Soy and that was it.

THey only tested him for the top 6 food allergies and top 6 environmental

allergies and goat milk. He did not test positive to milk, but has done so much

better on the formula.

>

> He had an endoscopy at 10 months that was negative. All biopsies were normal

and it looks like he does not have reflux or such.

>

> He is going to be 1 in March. I just don't know where to go from here. Do

you think a RAST test would indicate anything at this time. Do you think I

should start a low-dose chelation on him? Any advice would be appreciated. If

you have any additional questions, plesae ask. I really need some direction

right now. Thank you!!

>

> ~

>

February 28, 2011

He doesn't have enough hair yet. I thought about that, but I would have to

shave his head and I don't think it would even be enough. He has real fine hair

and not much of it.

> >

> > I am really at a point where I feel a bit overwhelmed. I would like some

input from you all. I have an 11 month old son who I believe is mercury toxic

and has multiple food intolerances.

> >

> > A bit of history on us: I am mercury toxic. I had 8 mercury fillings

removed in Jan of 2009. I was feeling so good after removal that my husband and

I decided we would like to have another child. I got pregnant in July of 2009

(just 6 months after amalgam removal). I had a semi-difficult pregnancy. I was

sick most of the pregnancy and also put on bedrest at 33 weeks for preterm

labor. When he was born they tested the placenta and found multiple infarctions

which at any time could have caused problems, preterm labor or even death. I

was induced to have him at 38w 4d due to a high stress test. He was born

healthy and weighed 6 lb 11 oz.

> >

> > I breastfed him for 2 months, but he was a VERY colicky baby. He never

seemed happy. I have so many food intolerances that I gave up long ago trying

to figure out what they were and just eat what I want. (terrible I know) So, I

think he might have been reacting to things I was eating. We quit breastfeeding

and started feeding him a homemade goat milk formula at 2 months of age. He did

really well for many months, until at about 5 months we started to introduce

foods. Each time we would introduce a new food he would get so congested he

would start vomiting. It has been downhill from there.

> >

> > At 9 months of age we put him on Alimentum formula and he has started to

gain weight and do much better. He still cannot tolerate any food. We have

tried rice, oatmeal, bananas, pears, peas, homemade pureed chicken, sweet

potatoes, and squash. Each time he eats he gets a diaper rash, red cheeks, and

terrible congestion.

> >

> > He tested positive on skin prick test to a sensitivity to Soy and that was

it. THey only tested him for the top 6 food allergies and top 6 environmental

allergies and goat milk. He did not test positive to milk, but has done so much

better on the formula.

> >

> > He had an endoscopy at 10 months that was negative. All biopsies were

normal and it looks like he does not have reflux or such.

> >

> > He is going to be 1 in March. I just don't know where to go from here. Do

you think a RAST test would indicate anything at this time. Do you think I

should start a low-dose chelation on him? Any advice would be appreciated. If

you have any additional questions, plesae ask. I really need some direction

right now. Thank you!!

> >

> > ~

> >

>

February 28, 2011

oh boy, we had sim issues with DS. He's still a " picky eater " at 22 mos.

Alimentum has soy--I know you can't stop it till you find alternatives, but it

may be creating a soy sensitivity. The goat milk formula had cow's whey in it,

which your DS prob reacted to (the weston price recipe, right?). We tried

that--disastrous. My son, thank god, started grabbing for my green smoothies

when he was 6 mos old, and thus I discovered a diet that is minimal in food

sensitivities. I feed him blended green smoothies--kale, blueberries, apple,

banana, lime juice, and hemp seed for calcium/EFAs/protein. He is starting to

taste and eat a few other things, but it's been a long road. What really really

helped was the houston's enzymes--Nofenol particularly. I have only recently

added trienza after the NOfenol really started to work (we needed less and less

of it after about 4-6 mos on nofenol). Nofenol is finicky--you have to work up

to a dose that works for him (usually means you overdo it and he gets loose

stool for a day or so before you pull back to slightly less). But once you hit

sweet spot, it's great. Also, I eliminated soy, gluten, casein, corn, chicken,

and eggs from his and my diet. I highly recommend reading the book Diet Wise

about identifying and eliminating food allergies yourself using the total

elimination diet--it takes time, but it was the only thing that worked to

identify all the allergies/sensitivities. You have to get all the sensitive

foods out of his diet before he can hit baseline (no reactions). otherwise,

you're not really finding out if it is banana or apple or carrot or whatever

else you've tried that he's reacting to. A rigorous food diary as you eliminate

all contendors till you hit baseline is essential. He will be able to tolerate

certain foods. But in my experience you have to stop " trying " things and reduce

to things you know he can tolerate for a time, then add one thing at a time and

let reactions clear before you try another thing. Lengthy process. But it kept

him growing and reaction free long enough for me to get here and start enzymes.

The TED gave us some quality of life and relief for DS.

If you were eating dairy/soy/gluten while breastfeeding, then that wd be the

colic and reflux--once I eliminated those in BOTH of us, that really went away.

The red cheeks are v common with a phenol issue, apparently. Nofenol fixes it

and helps the gut recover. I'm not doing the enzymes alone--we're in

pre-paration for doing chelation. But I had to stabilize situation before we

began.

If you want more suggestions and a barrel load of experience with these issues,

email me off list. It's too long to post here. There are reasons things like

chicken, eggs, soy, corn, as well as gluten and casein, are things to eliminate

first.

As for chelation, every parent makes the decision themselves. But stick around

and if the issues people talk about are similar issues for your son, then you're

prob in the right place. The first thing to do is a hair test so you have a

marker point from where to measure the changes and also so you know what

metals/problems you are dealing with. I'm not an expert on hair tests--I'm

learning about them right now, but most people use doctor's data hair elements

test, as far as I can tell. Andy Cutler uses those as his examples in his book

on hair tests.

best wishes,

Fiona