Giardia

[Guest guest]

Kind of choked up posting after reading Marilyn's post about her mom's passing..

Deep breath.

Something happened I guess after the chelation challenge and I have been feeling

awful- this was like about 6 weeks ago or so.

Anyway, I have Giardia.

I spoke to my alternative doc and he wants me to take;

Ox Bile

Catechu (some kind of bark?)

Romastika from Allergy Research Group. I have no idea what this is, maybe I

misspelled it?

Should I also try Betaine HCI?

What have you guys done to get rid of parasites like Giardia?

He is also going to give me a whole bunch of homeopathics.

Kind of rare for someone to get a parasite so soon after the alternative

antimicrobial lyme treatment.

I gotta get my immune system up and running better.

Doc said I need to get Mercury levels down in order for this to happen for me.

He said fungus won't go away until heavy metals are better.

I feel like a dog chasing it's tail.

Holding off on conventional stuff.

Jodi

[Guest guest]

does it ever end?? sorry to here - hang in - this too shall pass Jodi :-)

>

> Kind of choked up posting after reading Marilyn's post about her mom's

passing..

>

> Deep breath.

>

> Something happened I guess after the chelation challenge and I have been

feeling awful- this was like about 6 weeks ago or so.

>

> Anyway, I have Giardia.

>

> I spoke to my alternative doc and he wants me to take;

> Ox Bile

> Catechu (some kind of bark?)

> Romastika from Allergy Research Group. I have no idea what this is, maybe I

misspelled it?

>

> Should I also try Betaine HCI?

>

> What have you guys done to get rid of parasites like Giardia?

>

> He is also going to give me a whole bunch of homeopathics.

> Kind of rare for someone to get a parasite so soon after the alternative

antimicrobial lyme treatment.

>

> I gotta get my immune system up and running better.

> Doc said I need to get Mercury levels down in order for this to happen for me.

> He said fungus won't go away until heavy metals are better.

>

> I feel like a dog chasing it's tail.

>

> Holding off on conventional stuff.

>

> Jodi

>

[Guest guest]

Eileen,

I am sick of it and my diet is so friggen limited.

I am so good.

I'm getting discouraged.

It's been a hard 4-6 weeks since the stupid chelation challenge.

Jodi

[Guest guest]

i think we're sharing feelings again - lol - our ny connection??? just can't

seem to progress - 1 step up 12 back, you know - just need to look how far we've

come and all i can do is chuckle inside when people say you look good -I want to

say go on inside and see for yourself if you can get thru the yeast!!! or not

get hit by the irregular heartbeat or spasming pancreas - wacked out thyroid -

messed up adrenals - - so I just say " yes i'm doing better " !! LOL - we can do

this Jodi!!!

eileen 20 months scd

>

> Eileen,

>

> I am sick of it and my diet is so friggen limited.

> I am so good.

> I'm getting discouraged.

>

> It's been a hard 4-6 weeks since the stupid chelation challenge.

>

> Jodi

>

[Guest guest]

Eileen..

Thanks for the encouragement.

Honestly, after my docs phone call today- I am like ready to throw in the towel.

Everything goes hand n' hand.. gut pathogens/heavy metals/lyme for some people/

friggen endless candida.. one doesn't go away without the other. It is just

endless. I got rid of lyme but since heavy metals are such an issue and I can't

chelate it can make lyme symptoms relapse.

On top of that they rescheduled my sleep study..

Since surgery I have a hard time having " bulk " in stool and on bad days the BM's

burn. It's been bad now for a while thanks to this Giardia thing which who

knows how I got this? Various docs have discussed me trying buckwheat and

quinoa for bulking. Since I don't want to take questran.

I am going to start with Kefir and see if the rich probiotic foods made a

difference.

Totally bummed.

Jodi

[Guest guest]

Totally bummed.JodiAw =( I feel so bad for you and Eileen!! Especially since I'm progressing so much now, and doing so well, it seems unfair that you guys aren't doing better either =( I'm so thankful to my doctor, he's really made all the difference it me getting well. I hope you guys find what works for you soon! It seems about time. Peace =)Alyssa 15 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)No meds!

[Guest guest]

Sorry to hear this Jodi. I'm not familiar with all the drugs used to treat

giardia, but I wonder if it's not better to treat it quickly to get rid of it or

to go the natural route, since it is a cause of D. I hate flagyl, and wonder if

there is an alternative?

PJ

>

> Eileen..

>

> Thanks for the encouragement.

> Honestly, after my docs phone call today- I am like ready to throw in the

towel.

> Everything goes hand n' hand.. gut pathogens/heavy metals/lyme for some

people/ friggen endless candida.. one doesn't go away without the other. It is

just endless. I got rid of lyme but since heavy metals are such an issue and I

can't chelate it can make lyme symptoms relapse.

>

> On top of that they rescheduled my sleep study..

>

> Since surgery I have a hard time having " bulk " in stool and on bad days the

BM's burn. It's been bad now for a while thanks to this Giardia thing which who

knows how I got this? Various docs have discussed me trying buckwheat and

quinoa for bulking. Since I don't want to take questran.

>

> I am going to start with Kefir and see if the rich probiotic foods made a

difference.

>

> Totally bummed.

> Jodi

>

[Guest guest]

PJ-

I used to use flagyl a lot for pesky C Diff issues.

I really have to be careful with these kind of pharm drugs so I won't get

resistant and then if I land in the hospital I just won't respond anymore. It's

been a problem.

I also have to be careful with antibiotics as it immediately puts me into a

flare possibly reigniting C Diff issues.

I don't mind doing the parasite cleanse. There is a lot of good data out there

for black walnut and barks and people have been successful.

I am just tired of being at this stage so advanced into the diet.

My diet is quite limited.. yes, I can eat more things since surgery and it

doesn't bother me.. but if I don't watch it I have watery burning stool due to

the parts of intestine that were removed.

It saddens me that I will live this way for the rest of my life.

Jodi

[Guest guest]

I took Flagyl once and hated it, so I understand. I hope you feel better soon.

You have been through so much. I do hope you continue to heal, as you have just

been through surgery, and your body is still adjusting.

PJ

>

> PJ-

>

> I used to use flagyl a lot for pesky C Diff issues.

> I really have to be careful with these kind of pharm drugs so I won't get

resistant and then if I land in the hospital I just won't respond anymore. It's

been a problem.

>

> I also have to be careful with antibiotics as it immediately puts me into a

flare possibly reigniting C Diff issues.

>

> I don't mind doing the parasite cleanse. There is a lot of good data out

there for black walnut and barks and people have been successful.

>

> I am just tired of being at this stage so advanced into the diet.

> My diet is quite limited.. yes, I can eat more things since surgery and it

doesn't bother me.. but if I don't watch it I have watery burning stool due to

the parts of intestine that were removed.

>

> It saddens me that I will live this way for the rest of my life.

>

> Jodi

>

[Guest guest]

I always admired your courage, Jodi. It is pretty tough to be optimistic when

you are in such a bad condition, and there are so many chemichals that get

through the blood-brain barrier. These chemichals have a big impact in our mood.

Today I felt very angry for no reason. My hope is that now these chemicals are

leaving the tissue where they have been stored for years and making their way to

the gut to be excreted. So hopefully the day will come in which our bodies will

be clean of toxics and we can enjoy life.

My diet is also kind of limited. This is what I eat:

melon,

pear,

peach,

apple (golden),

avocado,

chestnut,

coconut,

organic meat,

small fish (twice a week),

cucumber,

zucchini,

cauliflower,

cabbage,

iceberg salat.

Are you taking empsom salt baths?

[Guest guest]

Hi Scd Dieter,

I take epsom salt, apple cider vinegar and baking soda baths and rotate. But at

least one epsom salt a day.

I am thinking of buying a portable Far Infra Red Sauna for my apartment. Many

in the ASD community use it for their kids that have very high toxic metal

levels. Sweating is a great way to get it out unfortunately it may not get

everything out of the Central Nervous System.. This turn into a ticking time

bomb scenario for immune health.. dealing with fungal infections, candida issues

or any pesky pathogens.

Since surgery my diet has been mainly protein, some fats like coconut oil,

avocado and dripped yogurt. I have some cooked veggies but I am very meat and

eggs heavy.. Not doing much fish due to the mercury.

I fear that all of this meat is radically unhealthy for me and the years I spent

on big pharma drugs and now being so meat heavy I would not be surprised if I

came down with some other type of awful disease like cancer. I mean my diet is

just way too acidic.

I have to really limit my veggie servings every day or I get burning runs due to

the surgery. I use some berries or papaya in my morning smoothie but that is

about it.

Unfortunately it is not suggested I use LDN again since I had Lyme Disease so

long term it would probably flare all the body and cognitive issues up again and

make it relapse- I cannot live through that.. But if it were just a gut/immune

thing I would totally jump and take LDN again.

Jodi

[Guest guest]

> Hi Scd Dieter,

>

> I take epsom salt, apple cider vinegar and baking soda baths and

> rotate. But at least one epsom salt a day.

>

> I am thinking of buying a portable Far Infra Red Sauna for my

> apartment. Many in the ASD community use it for their kids that

> have very high toxic metal levels. Sweating is a great way to get

> it out unfortunately it may not get everything out of the Central

> Nervous System.. This turn into a ticking time bomb scenario for

> immune health.. dealing with fungal infections, candida issues or

> any pesky pathogens.

Jodi, sorry to hear about these new troubles. What a shame for you.

>

> Since surgery my diet has been mainly protein, some fats like

> coconut oil, avocado and dripped yogurt. I have some cooked veggies

> but I am very meat and eggs heavy.. Not doing much fish due to the

> mercury.

> I fear that all of this meat is radically unhealthy for me and the

> years I spent on big pharma drugs and now being so meat heavy I

> would not be surprised if I came down with some other type of awful

> disease like cancer. I mean my diet is just way too acidic.

>

> I have to really limit my veggie servings every day or I get burning

> runs due to the surgery. I use some berries or papaya in my morning

> smoothie but that is about it.

>

> Unfortunately it is not suggested I use LDN again since I had Lyme

> Disease so long term it would probably flare all the body and

> cognitive issues up again and make it relapse- I cannot live through

> that.. But if it were just a gut/immune thing I would totally jump

> and take LDN again.

So you can't ever go back to it?

Or just for a certain while?

Mara

[Guest guest]

Mara,

All of my docs that work with LDN don't want to see me back on it

Basically I keep bringing the subject up just to be told that it is a real

gamble. First couple of weeks on LDN and every dosage increase ends up in

difficulty walking- there were a couple of bouts where I couldn't walk or lift

myself at all.. Some of that dissipated but cognitive stuff and memory went to

pits.. Some of the aches in my neck and arms were just debilitating- that

apparently is from Erlichiosis.

Thing is the wonderful FDA has now made a component of what I got in my

alternative Lyme treatment illegal. So even if I decided to try LDN to give it

a shot.. let's say it would cause something (which the docs seems to think it

will) that means the treatment I got is no longer available. Well they

substituted part of the treatment but it isn't the same. Anyway, not too

mention the financial cost of all of this.

My alternative Lyme doc has had real success giving his MS and UC patients LDN.

Jodi

> > Unfortunately it is not suggested I use LDN again since I had Lyme

> > Disease so long term it would probably flare all the body and

> > cognitive issues up again and make it relapse- I cannot live through

> > that.. But if it were just a gut/immune thing I would totally jump

> > and take LDN again.

>

> So you can't ever go back to it?

>

> Or just for a certain while?

>

>

> Mara

>

[Guest guest]

I hate flagyl, and wonder if there is an alternative?

I think all of us who have had a course of Flagyl hate the

stuff. Right now I have a prescription to fill for Diflucan, but

this is for candida. I don't know it it would work for

giardia. However, if it would, my (very good, very knowledgeable)

doctor says the Diflucan works differently from most of these things.

It sort of surrounds the baddies and escourts them out, rather than

killing them outright and causing die-off. Even so, I've been putting

off filling the prescription but I think I'd better do it and havea

the help to get rid of an extra problem quicker.

[Guest guest]

Is that a side effect of losing the ileocecal valve? I don't have burning BMs,

but since surgery, they're all over the map from normal to D. What I eat doesn't

appear to make a difference. There's no pain or urgency, so it's not a huge

deal. But I wonder if things will settle down with time?

Also, I've read that Grapefruit Seed Extract can kick even a stubborn case of

giardia's butt :-).

Holly

Crohn's

SCD 12/01/08

>

> Since surgery I have a hard time having " bulk " in stool and on bad days the

BM's burn. It's been bad now for a while thanks to this Giardia thing which who

knows how I got this? Various docs have discussed me trying buckwheat and

quinoa for bulking. Since I don't want to take questran.

>

> I am going to start with Kefir and see if the rich probiotic foods made a

difference.

>

> Totally bummed.

> Jodi

>

[Guest guest]

Holly,

I had some of my small intestine removed too.

So yeah it's an effect of surgery.

I think in your situation you just have to give it time.. since it doesn't burn

than it's not an issue for needing to bind bile salts although you don't have

you GB. Could help bulk.. You could look into Questran.. Did your GI talk to

you about this at all?

I found carb restriction helped with the BM's being all over the place.

Apples were like the worst.

Ugghh.. I got so sick trying Grapefruit Seed Extract in the past.

I just wanna crawl in a hole and not come out.

Jodi

> >

> > Since surgery I have a hard time having " bulk " in stool and on bad days the

BM's burn. It's been bad now for a while thanks to this Giardia thing which who

knows how I got this? Various docs have discussed me trying buckwheat and

quinoa for bulking. Since I don't want to take questran.

> >

> > I am going to start with Kefir and see if the rich probiotic foods made a

difference.

> >

> > Totally bummed.

> > Jodi

> >

>

[Guest guest]

Jodi,

I had a little small intestine taken out too, but I don't know how much. Very

little I presume. My brain went on vacation the 2 times I saw my surgeon, so I

went into surgery knowing very little, and got out knowing very little. My

surgeon was great though, and very personable, which I hear can be rare in a

surgeon.

I will finally see my GI next Friday for the first time since July. I like her,

but I think she has more patients then she can handle. It takes months to get an

appointment, yet she works long hours 5 days a week. She spends a lot of time

with you at each appointment though, so it's nice not to be rushed out the door.

Hopefully she'll agree to writing a script for LDN. I'll ask about Questran, but

I don't think I probably will need it.

Carbs don't seem to have an effect on me one way or the other. I get between 100

- 100 grams a day (I'm making an effort to eat less carbs then I would really

like). Why do carbs have to be so dang yummy anyway? A couple weeks ago, I went

back to the intro diet and have been adding one new food every 3 days, just to

see if it makes a difference. So far, no patterns regarding BMs. As far as

everything else goes, each new food seems to agree with me. No die off or

extreme hunger like the first time though a year ago, so I must have made some

progress :-).

I hope you can find something to whack the giardia. How about oil of oregano or

olive leaf extract? Maybe garlic oil?

Holly

Crohn's

SCD 12/01/08

> > >

> > > Since surgery I have a hard time having " bulk " in stool and on bad days

the BM's burn. It's been bad now for a while thanks to this Giardia thing which

who knows how I got this? Various docs have discussed me trying buckwheat and

quinoa for bulking. Since I don't want to take questran.

> > >

> > > I am going to start with Kefir and see if the rich probiotic foods made a

difference.

> > >

> > > Totally bummed.

> > > Jodi

> > >

> >

>

[Guest guest]

Hi Holly..

A bit overwhelmed in Jodi'ville..

To compound to this didn't even realize we moved our clock back today.. LOL.

> I had a little small intestine taken out too, but I don't know how much. Very

little I presume. My brain went on vacation the 2 times I saw my surgeon, so I

went into surgery knowing very little, and got out knowing very little. My

surgeon was great though, and very personable, which I hear can be rare in a

surgeon.

Sometimes it is best not to know all the info going in so we can put faith in

their hands..

I was pretty adamant asking questions as I wanted to know how much they took

out.. Unlike you going into surgery my surgeon and GI couldn't just say- " the

area we are removing is X.. " It was more like " we are removing all of this..

and we won't lie to you as we don't know how much more has to be taken out. "

They did not have a good colonoscopy to also guide them. I appreciated their

honesty but at the same time being a surgeon I worried about being all too happy

" snip snip " especially since I won't take conventional drugs anymore- only

Prednisone.. so I was worried anything badly diseased- I don't know what they

would do.. Imagination can get the best of me.. so yeah.. kudos to you for your

mind going on vacation.

I loved my surgeon too.. He was so great and is like a big teddy bear and had a

heart. Very thankful my GI sent me to him.. GI said that the he fits patients

also by personality.

Doesn't it make such a huge difference having personable docs on your medical

team.

I am so glad that they were the ones that held my hand through this very

difficult part of my life.

> I will finally see my GI next Friday for the first time since July. I like

her, but I think she has more patients then she can handle. It takes months to

get an appointment, yet she works long hours 5 days a week. She spends a lot of

time with you at each appointment though, so it's nice not to be rushed out the

door. Hopefully she'll agree to writing a script for LDN. I'll ask about

Questran, but I don't think I probably will need it.

>

That would be awesome. My GI won't prescribe LDN until there are larger studies

about IBD- he is super intrigued though..

Ask her to explain your pathology report and tell you the exact amount they

removed and how this might inhibit you absorbing certain nutrients. B12 gets

absorbed in the terminal ileum- so now I self inject B12/B complex every 5 days

and I feel so much better.

Not saying it is the same for you.. but those are a couple of good questions.

> Carbs don't seem to have an effect on me one way or the other. I get between

100 - 100 grams a day (I'm making an effort to eat less carbs then I would

really like). Why do carbs have to be so dang yummy anyway? A couple weeks ago,

I went back to the intro diet and have been adding one new food every 3 days,

just to see if it makes a difference. So far, no patterns regarding BMs. As far

as everything else goes, each new food seems to agree with me. No die off or

extreme hunger like the first time though a year ago, so I must have made some

progress :-).

Why are you eating less carbs than you would like if you feel it has no effect

on you? Personally, I would just keep honey to a minimum and like sweet

bananas- stuff like that until your gut ecology settles post surgery.

I read the Book " Life Without Bread " and incorp'ed some ideas hoping it would

help my wacky BM's.. but really hoping it would help the burning I get post

surgery. GI wasn't sure it would happen and we waited as the BM's were still

weird 4 weeks after sugery- he didn't want to jump the gun as 4 weeks is still

very fresh.. but I was having a lot of liquid and it burned. Happens to some of

us depending on how much they remove. I have spoken to a few people on lists-

but most have added back illegals like bulking agents to help with the burn-

like rice. It is very uncomfortable and I don't have the greatest track record

with pharm drugs.. Questran can constipate- although theoretically I welcome

that- feeling constipated is actually VERY painful for me. Anyway, I limited

carbs and walla- stools got so much better- it was like a miracle.. Here and

there is would burn but not like needing to run to the toilet 20 minutes after

every meal and snack.. I was feeling awful though so I intro'd food rotation

principles that every 4 day I had a higher carb day- like a beautiful whopping

plate of butternut squash, sea salt and ghee.. YUM!

I was really considering putting in soaked buckwheat and quinoa in my diet this

past week.. because everything just got out of control.. but then I found out I

have Giardia.. So holding off on that as I think it'll all turn around once I

knock the Giardia out..

I will keep picking up these pathogens as long as my toxic heavy metal load is

so incredibly high. Also won't be able to get rid of yeast and congestion due

to the metals.

It all goes hand in hand..

> I hope you can find something to whack the giardia. How about oil of oregano

or olive leaf extract? Maybe garlic oil?

Thanks Holly..

I have to do the big gun anti-parasitic cleanse with a GB/liver flush even if it

means going on a short stint of Prednsione.

Thanks for the support.. whoa that was a mouthful on this morning that is

supposed to be 7am and not 6am! LOL.

Jodi

[Guest guest]

Hi Jodi,

> A bit overwhelmed in Jodi'ville..

> To compound to this didn't even realize we moved our clock back today.. LOL.

>

LOL, that's an advantage I have living in Arizona...we never change the clocks

:-)

>Imagination can get the best of me.. so yeah.. kudos to you for your mind going

on vacation.

>

I have a wild imagination too!

> Doesn't it make such a huge difference having personable docs on your medical

team.

> I am so glad that they were the ones that held my hand through this very

difficult part of my life.

>

That's why I got rid of my last GI. Very cold with zero bedside manner.

> Ask her to explain your pathology report and tell you the exact amount they

removed and how this might inhibit you absorbing certain nutrients. B12 gets

absorbed in the terminal ileum- so now I self inject B12/B complex every 5 days

and I feel so much better.

> Not saying it is the same for you.. but those are a couple of good questions.

Thanks for the tip! I probably would have forgot to ask. My dad did ask my

surgeon about the B12, and he didn't think enough of the ileum was taken out to

affect it. Hopefully that's the case! But I do want to find out exactly how much

of my intestine I'm missing.

> Why are you eating less carbs than you would like if you feel it >has no

effect on you?

Mostly because I'm worried about carbs causing a problem. So many people seem to

have problems with them, I'm kind of afraid to press my luck. I eat a tbsp of

raw honey each day for allergy reasons (it really has helped a lot) and 1/2 cup

of Welch's grape juice (how I love that stuff, even diluted) as my main sweets.

I tend to eat a fair amount of squash too. I haven't had a banana in ages

though.

> I will keep picking up these pathogens as long as my toxic heavy metal load is

so incredibly high. Also won't be able to get rid of yeast and congestion due

to the metals.

>

Does your doc have any idea why your heavy metals are so high? I sure hope I

don't have any problems there. I do have 7 mercury fillings, which makes me

uneasy. But my dentist said removing them would expose me to more mercury then

just letting them be.

I hope this will be a better week for you!

Holly

Crohn's

SCD 12/01/08