Need Some Advice

July 3, 2007

- it's very common that a drug that once worked well will not

work so well if you stop and restart it. Hopefully the increased dose,

though, will make a difference; sometimes that does the trick.

Besides Enbrel, you can try Humira and Remicade. But give the

increased dose of Enbrel a good chance first. You don't want to work

through all the drugs too quickly or else you could really be in a fix!

Did you talk to the drug company that makes Enbrel before you went off

it? Sometimes they can/will help out between jobs/insurance companies

because they should know that if you stop even for a couple of months

they might lose you completely. Just so you'll know for the future...

regards,

sherry z

July 4, 2007

" " wrote:Then I switched jobs and was without it for about 2

months. I have started it up again and it seems like it has lost all

its power. Has anyone else had Enbrel stop working? If so, what did

you try next?

I had to stop my Enbrel for about two months last year when I had my

hip replacement, and the same thing happened; it was much less

effective when I restarted it. My rheumatologist changed me to Humira

now instead. Been on it about 3-4 months now. (She had also offered me

the option of Remicade, but I work full-time and just can't juggle my

schedule to fit in one or two hour long appointments for the infusions!)

July 6, 2007

you may have drug induced lupus [from the enbrel], or you may in fact have

lupus. the doctors found that I have lupus. I stay out of the sun and wear

sunscreen and my psoriasis and lupus rash are clearing and i am still in enbrel

my liver was enlarged also . yes I have lupus. cathy from ma

August 4, 2007

Fran, I have suffered greatly with my knees and underwent arthroscopic surgery

on both of them last October. It did nothing for my pain. I finely broke down

and bought a cane. My surgeon, who I loved, also recommded I get both knees

replaced at the same time and then go to a rehab center after the surgery. My

very wise rheumy, quietly asked me if I would not mind getting a second opinion.

I agreed that it was probably a wise idea.

Well, first of all I live in a small town outside of Seattle. So going to

another doctor in this area, would not work since all the doctors know and work

with each other. So I went to a large, well known orthopedic group in Seattle.

The doctor there was horrified that my doctor recommended surgery and he said

NEVER on both knees at once. He said I could get nice new knees but still be in

pain, since the pain was coming from the inflammatory arthritis.

I spent a year worrying about surgery when I should have been under stronger

treatment from the rheumy. This is not his fault and will not waste space

talking about why I was not helped. But, my rheumy is now aggressively treating

me with Humira and Arava. Slowly, very slowly I am pulling out of this.

Talk more to your rheumy, and for heavens sake, get a second opinion. Somewhere

not in the local area of your surgeon.

Do not under any circumstances have surgery until you have that second opinion,

MRI's, etc.

Sadly, I just got a copy of my bloodwork and think the Arava will have to be

discontinued. My labs looked quite sketchy.

Anyhow, keep us all posted Fran on what you decide to do. We all wish you the

best always. in Poulsbo, WA.

August 4, 2007

I know several people who have recently chosen to have both knees done at the

same time and did beautifully. I know them both from my health club and they

worked out diligently on whatever equipment they could manage and in the water

prior to surgery - built up their muscles enough that recovery was really

speedy. One was back at the health club walking with her walker in 3 weeks! My

own mother had both done at the same time at age 83. This time it was the

doctor's choice, however, because he said he knew if he did one he'd never get

her back to do the second one. Even at age 83 she was only in rehab for a

month, and even then only because my father was not in good enough shape

physically to help her at home. So, while a double knee is not the norm, I

wouldn't think it would " horrify " an ortho.

My knee that was replaced six years ago did suffer a little bit of pain from the

RA but absolutely nothing compared to the other knee which is all mine!

However, even that knee has a little osteo and I am waiting to see how much

Enbrel helps it before I go to the ortho for any additional treatment because as

of a year ago, I was told it was not nearly bad enough for surgery and wouldn't

be for several years.

I think the idea of a second opinion is likely a good one, particularly since

you have differing opinions from your current docs. But an x-ray or MRI should

be able to determine with some certainty whether or not your knees are at that

" bone on bone " state where most of us finally decided we have had enough and

decide to go under the knife. If it is at that point, no amount of PA medicine

is going to eliminate the pain sufficiently that you will be able to walk

without difficulty. .

Arthroscopic surgery didn't help my knee much at all either. In fact, the only

people I know who have been helped by it ended up having to go thru 3 months of

rehab - same length of time it took me to recover from a total knee

replacement!!!!! I did have it on my shoulder last August, though, for a torn

rotator cuff that was completely detached from the bone and a badly torn biceps

tendon. Surgery and rehab were a piece of cake - but that was before PA reared

its ugly head. .

Joanna Hoelscher

630-833-7361

August 5, 2007

Dear ,

Thanks for the info and the advice. I plan on getting several opinions if I

do decide on surgery. This morning was rough though since I barely made it

to the bathroom when I first woke up. I had arthroscopic surgery done on my

jaw once though and it only increased the pain, so I understand how you feel

about that type of surgery.

My main problem is most of the anti inflammatories don’t work on me,

especially all the new wonder drugs on the market. The only one I could

tolerate was Arava and now it seems to have destroyed my immune system. I

was hoping that the injectable cushioning gel into the joints would work,

but my surgeon thinks those are too risky too due to my immune system and my

allergic reactions in the past to injectable drugs. So I feel like my

options are narrowing. I’m either looking at getting a electric wheelchair

and changing my house and lifestyle again or taking the plunge after more

research and going for the surgery. It’s scary both ways.

My pain is off the charts most days and I’m in pain management and on some

of the highest pain narcotics there are. I can always increase them, but I

hate to keep going that way because eventually that will end and then where

will I be? I’m so glad that Humira and Arava are working for you. I really

thought they were going to be my lifesavers and for while Arava helped me

walk, but it sure didn’t slow down the arthritis. My arthritis spread just

as fast as it had been regardless of what I took. Now my family doctor is

worried about even NSAIDS, but I’m starting to think he is getting paranoid.

I’ve never had an ulcer yet, and so far I’ve done ok that way. I know

predinsone is bad long term, but it’s either that or not walk or move at

all. The pain is impossible without predinsone and Arava as well.

I really appreciate your advice, and I do plan many other opinions before I

do anything. Getting advice from the group is always great because it’s

people who have been there and gone through what I am dealing with right

now. I hope you continue to do great and I’ll let you know if something

else develops. Thanks again for your advice and info.

Sincerely, Fran

August 23, 2007

Please see the therapy, malabsorption, fish oil, and diet folders.

jeksmom062405 wrote:

>Hi All,

>

>I have been a lurker here for some time now. I have a wonderful 26

>month old boy who is an absolute joy. He was late to crawl (14 mths)

>and late to walk (18 mths). In addition he refused to eat anything

>crunchy, only baby food. We first had him evaluated at 14 mths and

>were told that this was probably due to hypnotonia. He qualified for

>OT and increased his variety somewhat in feeding (he started eating

>crunch foods).

>

>Our pediatrician recommended that we had a 2nd evaluation done when

>he was 21 months old because he wasn't saying any words. Again we

>went through the city's program and the occupational therapist

>brought up apraxia but said she couldn't diagnose him. He has always

>been great at jibber-jabber, and certain sounds (da da, ga ga). We

>started speech therapy and he made some progress increasing his

>sounds. His gross motor skills goals were met within weeks (going up

>and down stairs holding someone's hands, climbing the jungle gym,

>tolerating other textures). However he isn't near any of his goals

>related to speech.

>

>Someone recommended that we see a developmental pediatrician. My son

>was evaluated a few weeks ago and we had the conference last week.

>She brought up apraxia and his lack of motor planning, since he

>wasn't imitating us. She also mentioned autism, although wouldn't

>diagnose it since she said according to CHAT 6 months ago he met all

>the markers and now due to all his progress he met just 2.

>Specifically he wants to stick to his own agenda and is fiercely

>stubborn about doing anything else. He has never shown any interest

>in pretend play.

>

>So now we have more " it could be this, it could be that. " I love my

>son dearly and I know he needs therapy. The developmental

>pediatrician recommended a year of intensive therapy, working with an

>educator on floor play, speech therapy, and occupational therapy. I

>don't know where to begin, I am so overwhelmed. I am just wondering

>if anyone can provide guidance, advice or feedback. We submitted the

>paperwork for Childfind and hope to have our son evaluated some time

>next month. In the meantime we're working with the Parent Infant

>Exchange program where my son qualifies for both OT and speech, but

>currently we're on the waiting list since the speech therapist we

>were using just left.

>

>I apologize for rambling, I just feel extremely overwhelmed.

>

>Thank so much.

>Tara

>

August 23, 2007

{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{Tara}}}}}}}}}}}}}}}}}}}}}}

first of all, that hug just needed to be given, since I'm hearing the

frustrations you're having right now. I can so sympathize with this, and it all

sounds as though I said it myself. It's so frustrating to KNOW that our

children need a certain type of help, and yet, they can't always get it at the

right

time, etc.

If you're a woman with faith, just keep praying for God's perfect timing,

and for the right people to come into your son's life at the right time. I

think that the RIGHT Therapist is really the key, because you could start now

with a mediocre therapist and go every week for 4 mos and have little progress

if there's not the right " connection " with your son. But being on a waiting

list might get that RIGHT person for you, and he could be waiting for months

without any therapy at all, but then once he starts with someone he will work

for, can progress to a point that surpasses what the mediocre therapist could

do. You just never know-- and THAT's the frustrating part.

I wish you the best

Becky

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

August 24, 2007

---Tara,

I just wanted to say that I'm glad you're not " lurking " anymore.

We all need, at times, to come here and just get some reassurance

that we aren't alone in this. When I started on the apraxia journey

I too felt completely overwhelmed and felt that I didn't know what to

do and where to go. I have learned over these past years that the

best thing for my son(turns 8 on monday!)is to listen to my instincts.

You really are on the right path in that you are pro-active and

already seeking help. Just take one thing at a time and do it one

day at a time. You are lucky that you have a developmental ped. They

really are a great source of information. If you are having trouble

finding services I know my developmental ped told me exactly where to

start. We started in early intervention when my son was 4 months

old, so it was easier for me to access services later on when apraxia

reared it head.

I know it's a hard journey that none of us signed on for, but there

are good days and bad. It's ok to feel overwhelmed by it all some

days, it just makes us stronger to deal with it the next.

I wanted to at least let you know that I really know what you're

feeling, not just offer up a few folders to look at.

Please post if you have questions or just to say you're having a

better day:)(they will come, I promise!)

Sandy

mom to almost 8

In , " jeksmom062405 "

<tarakeelean@...> wrote:

>

> Hi All,

>

> I have been a lurker here for some time now. I have a wonderful 26

> month old boy who is an absolute joy. He was late to crawl (14

mths)

> and late to walk (18 mths). In addition he refused to eat anything

> crunchy, only baby food. We first had him evaluated at 14 mths and

> were told that this was probably due to hypnotonia. He qualified

for

> OT and increased his variety somewhat in feeding (he started eating

> crunch foods).

>

> Our pediatrician recommended that we had a 2nd evaluation done when

> he was 21 months old because he wasn't saying any words. Again we

> went through the city's program and the occupational therapist

> brought up apraxia but said she couldn't diagnose him. He has

always

> been great at jibber-jabber, and certain sounds (da da, ga ga). We

> started speech therapy and he made some progress increasing his

> sounds. His gross motor skills goals were met within weeks (going

up

> and down stairs holding someone's hands, climbing the jungle gym,

> tolerating other textures). However he isn't near any of his goals

> related to speech.

>

> Someone recommended that we see a developmental pediatrician. My

son

> was evaluated a few weeks ago and we had the conference last week.

> She brought up apraxia and his lack of motor planning, since he

> wasn't imitating us. She also mentioned autism, although wouldn't

> diagnose it since she said according to CHAT 6 months ago he met

all

> the markers and now due to all his progress he met just 2.

> Specifically he wants to stick to his own agenda and is fiercely

> stubborn about doing anything else. He has never shown any

interest

> in pretend play.

>

> So now we have more " it could be this, it could be that. " I love

my

> son dearly and I know he needs therapy. The developmental

> pediatrician recommended a year of intensive therapy, working with

an

> educator on floor play, speech therapy, and occupational therapy.

I

> don't know where to begin, I am so overwhelmed. I am just

wondering

> if anyone can provide guidance, advice or feedback. We submitted

the

> paperwork for Childfind and hope to have our son evaluated some

time

> next month. In the meantime we're working with the Parent Infant

> Exchange program where my son qualifies for both OT and speech, but

> currently we're on the waiting list since the speech therapist we

> were using just left.

>

> I apologize for rambling, I just feel extremely overwhelmed.

>

> Thank so much.

> Tara

>

August 24, 2007

Hi,

Yes, it is a battle with the insurance companies, this is a common

denial they state for not treating verbal apraxia. Look to your doctor

for help, they may be able to use a different code for treatment. My

doctor used code

Dx1: 784.5 other speech disturbance and was able to get it covered..

However, though, with a diagnosis of speech apraxia you may have

better luck in fighting the school district for services for your

child. There is a lot of published information about children with

apraxia needing 1 on 1 therapy and frequently. You should be able to

get 3, 4 or 5 times a week speech therapy through the school district

once your child turns 3. How often is your child getting speech now at

school?

My son gets 5 times a week at school, and I was trying to get more

through his insurance, but a professional speech therapist that I

trust told me that anymore than 5 times a week for Liam would be too

much, he gets tired out and it could even cause him to regress. So

think about that too.

The fights are many for our kids, but you have to chose the best

fights, that will do the most help for them and leave you with some

energy leftover to be the best parent you can.. ya know ?

Good luck. I have extensive knowledge in fighting the school district

and with the diagnose of verbal apraxia you should be able to get 3, 4

, or 5 times per week speech (free) from the school. Go to the

library and check out books about advocating for your special ed

child, or about the IEP process. Start now preparing for the meeting.

Here on this list we can give you lots of advice about fighting the

school district.

Unfortunatley that is my advice, fight the school district instead of

your insurance company, you'll win with the school but just get

frustrated with your insurance. And if you can win with the school,

the insurance may not be needed.

Annie

September 3, 2007

Hi Cherie,

I had the gastric emptying bowel series as well as an endoscopy,

colonoscopy, hydrogen breath test, lactose intolerance test and

fructose intolerance test. I was also put on numerous drugs such as

Zelnorm and Xifaxan...all with no relief or diagnosis. I asked my GI

if my symptoms could be from my implants and fungus based on what I

had read. He said he didn't put much stock into implant illness,

yeast or fungus and so I went ahead with the drugs and my health

plummeted dramatically. The side effects alone were horrible and I

regret the harm they may have done to my body.

I then contacted Dr. Kolb who said my GI probs were due to the

implants and put me on Nystatin. Immediately my bloating decreased

and then I had the explant. Since then my digestion has improved

dramatically as long as I am on probiotics, enzymes and a strict diet.

If I were you, I'd forget the GI guy and the toxic drugs, go the

natural route, and start detoxing to prepare for surgery. - PH

>

> Hi Everyone,

>

> I am seeing my Gastroenterologist on Wednesday in San Francisco for the

> results of all the tests I had done last month. I already know that my

> Gastric Emptying test came out normal (even though my test here in

> Sacramento did not) but I need to find out about out the results of the

> rest. Now that I know this is all caused by my implants, do I want to

> tell them about this and that I'm having them removed? I am not sure

> as of yet if they will agree with me. If they give me a diagnosis and

> either want to do more tests or try more meds (which really nothing I

> have tried yet helps) do I go forward with them or hold off until my

> implants come out? I would rather use my money for my surgery and trip

> to Denver. My insurance has been paying for the S.F. doctor just not my

> traveling expenses.

>

> Thanks

> Cherie

>

September 3, 2007

PH,

Thanks for the info! How long after your surgery did you start

feeling better and what worked best for you to detox before hand? I

have started taking Fungal Defense (just one at night with water) but

today my sinus's are on fire! I leave to go on vacation on Thursday

and I am thinking about stopping the defense and try again when I get

home in a week. What do you recommend?

Thanks!

Cherie

> >

> > Hi Everyone,

> >

> > I am seeing my Gastroenterologist on Wednesday in San Francisco

for the

> > results of all the tests I had done last month. I already know

that my

> > Gastric Emptying test came out normal (even though my test here

in

> > Sacramento did not) but I need to find out about out the results

of the

> > rest. Now that I know this is all caused by my implants, do I

want to

> > tell them about this and that I'm having them removed? I am not

sure

> > as of yet if they will agree with me. If they give me a

diagnosis and

> > either want to do more tests or try more meds (which really

nothing I

> > have tried yet helps) do I go forward with them or hold off until

my

> > implants come out? I would rather use my money for my surgery and

trip

> > to Denver. My insurance has been paying for the S.F. doctor just

not my

> > traveling expenses.

> >

> > Thanks

> > Cherie

> >

>

September 3, 2007

Hi Cherie,

Unfortunately I wasn't able to detox before surgery because I didn't

know any better. By the time I contacted Dr. Kolb I was in pretty bad

shape and requested explant within a week.

At first, I was really sick - debilitating fatigue, eye pain, high

intraocular pressure, blurry vision, loss of vision, numbness,

tingling, felt as if I had a brain infection, cognitive function of a

4 year old, constant headache and pressure, muscle aches, lack of

coordination, high mercury levels, high cortisol and an MSH of 8

(indicates neurotoxins).

5 months after explant with lots of detoxing, I no longer have the

horrible neurological symptoms...thank God!! I still have occasional

brain fog but it's no where near as severe. I still have occasional

blurry vision but it's not as extreme. My major complaint is fatigue

because when it hits it hits so hard. However, my energy has improved

overall in that I am having more moments where I can accomplish

something. I am still waiting for the day to feel like my old self

but know it takes patience.

I took Fungal Defense but didn't experience any side effects. If I

were you I'd continue to take it unless it bothers you too much. I

don't think there would be any harm in stopping it though because it's

natural and so the fungus shouldn't build up a resistance to it if you

start and then stop, like w/ prescription antifungals.

What worked best for me as far as settling my stomach issues was

Caprylic Acid (3600 mg/day for 2 weeks). At the same time I was also

taking (and continue to take) Primal Defense, Digestive Enzymes and

drinking Garden of Life Goatein w/ coconut milk.

I am currently on day 11 of a " ParaNix/Internal Sweep " cleanse that

will last a total of 60 days. It's very gentle but very effective and

I'm confident that my gut problems are getting better each day.

When is your explant date? - PH

> > >

> > > Hi Everyone,

> > >

> > > I am seeing my Gastroenterologist on Wednesday in San Francisco

> for the

> > > results of all the tests I had done last month. I already know

> that my

> > > Gastric Emptying test came out normal (even though my test here

> in

> > > Sacramento did not) but I need to find out about out the results

> of the

> > > rest. Now that I know this is all caused by my implants, do I

> want to

> > > tell them about this and that I'm having them removed? I am not

> sure

> > > as of yet if they will agree with me. If they give me a

> diagnosis and

> > > either want to do more tests or try more meds (which really

> nothing I

> > > have tried yet helps) do I go forward with them or hold off until

> my

> > > implants come out? I would rather use my money for my surgery and

> trip

> > > to Denver. My insurance has been paying for the S.F. doctor just

> not my

> > > traveling expenses.

> > >

> > > Thanks

> > > Cherie

> > >

> >

>

September 3, 2007

> > >

> > > Hi Everyone,

> > >

> > > I am seeing my Gastroenterologist on Wednesday in San Francisco

> for the

> > > results of all the tests I had done last month. I already know

> that my

> > > Gastric Emptying test came out normal (even though my test here

> in

> > > Sacramento did not) but I need to find out about out the results

> of the

> > > rest. Now that I know this is all caused by my implants, do I

> want to

> > > tell them about this and that I'm having them removed? I am not

> sure

> > > as of yet if they will agree with me. If they give me a

> diagnosis and

> > > either want to do more tests or try more meds (which really

> nothing I

> > > have tried yet helps) do I go forward with them or hold off until

> my

> > > implants come out? I would rather use my money for my surgery and

> trip

> > > to Denver. My insurance has been paying for the S.F. doctor just

> not my

> > > traveling expenses.

> > >

> > > Thanks

> > > Cherie

> > >

> >

>

September 3, 2007

Hi Cherie, I forgot to answer your question about the detoxing. I've

done several things so I don't know which one has helped the

most...it's probably a synergy of the energies.

I am doing:

* craniosacral therapy to balance the body

* lymphatic massage to get the lymphatic system flowing

* ionic foot baths to detox metal, yeast and toxins

* the Rife machine to fight yeast

* far infared sauna - although I've only done it a couple times

* cold laser therapy to fight the yeast

* had amalgam fillings removed

* ear candling to relieve sinus pressure

* coffee enemas - sounds weird but very helpful. Search this site

for more info

* hypnotherapy to reduce fears and stay positive - absolutely

amazing how it works...I was so skeptical but desperate enough that I

tried it and am so thankful

* dry skin brushing

* ParaNix 60 day cleanse with Internal Sweep and Tea

Diet is also extremely important. Based on your own symptoms, you'll

have to come up with your own plan. It's important to be consistent

as you may find that results don't happen overnight. There were so

many times I wanted to give up but sticking with it will bring

results! - PH

> > > >

> > > > Hi Everyone,

> > > >

> > > > I am seeing my Gastroenterologist on Wednesday in San Francisco

> > for the

> > > > results of all the tests I had done last month. I already know

> > that my

> > > > Gastric Emptying test came out normal (even though my test here

> > in

> > > > Sacramento did not) but I need to find out about out the results

> > of the

> > > > rest. Now that I know this is all caused by my implants, do I

> > want to

> > > > tell them about this and that I'm having them removed? I am not

> > sure

> > > > as of yet if they will agree with me. If they give me a

> > diagnosis and

> > > > either want to do more tests or try more meds (which really

> > nothing I

> > > > have tried yet helps) do I go forward with them or hold off until

> > my

> > > > implants come out? I would rather use my money for my surgery and

> > trip

> > > > to Denver. My insurance has been paying for the S.F. doctor just

> > not my

> > > > traveling expenses.

> > > >

> > > > Thanks

> > > > Cherie

> > > >

> > >

> >

>

September 3, 2007

Hi, I forgot to answer your question about the detoxing. I've done

several things so I don't know which one has helped the most...it's

probably a synergy of the energies.

I am doing:

* craniosacral therapy to balance the body

* lymphatic massage to get the lymphatic system flowing

* ionic foot baths to detox metal, yeast and toxins

* the Rife machine to fight yeast

* far infared sauna - although I've only done it a couple times

* cold laser therapy to fight the yeast

* had amalgam fillings removed

* ear candling to relieve sinus pressure

* coffee enemas - sounds weird but very helpful. Search this site

for more info

* hypnotherapy to reduce fears and stay positive - absolutely

amazing how it works...I was so skeptical but desperate enough that I

tried it and am so thankful

* dry skin brushing

* ParaNix 60 day cleanse with Internal Sweep and Tea

Diet is also extremely important. Based on your own symptoms, you'll

have to come up with your own plan. It's important to be consistent

as you may find that results don't happen overnight. There were so

many times I wanted to give up but sticking with it will bring

results! - PH

> > > >

> > > > Hi Everyone,

> > > >

> > > > I am seeing my Gastroenterologist on Wednesday in San Francisco

> > for the

> > > > results of all the tests I had done last month. I already know

> > that my

> > > > Gastric Emptying test came out normal (even though my test here

> > in

> > > > Sacramento did not) but I need to find out about out the results

> > of the

> > > > rest. Now that I know this is all caused by my implants, do I

> > want to

> > > > tell them about this and that I'm having them removed? I am not

> > sure

> > > > as of yet if they will agree with me. If they give me a

> > diagnosis and

> > > > either want to do more tests or try more meds (which really

> > nothing I

> > > > have tried yet helps) do I go forward with them or hold off until

> > my

> > > > implants come out? I would rather use my money for my surgery and

> > trip

> > > > to Denver. My insurance has been paying for the S.F. doctor just

> > not my

> > > > traveling expenses.

> > > >

> > > > Thanks

> > > > Cherie

> > > >

> > >

> >

>

September 3, 2007

PH,

I do not have a date scheduled as of yet, I just emailed my breast

photos to Dr. Huang's office yesterday. We are doing the consult by

email and phone. I live in California, so they are really being

accomodating. I am hoping to have surgery by Oct. or Nov. I am

divorced so I have to have a friend go with me and I have to schedule

this around her schedule too. I have a 7 yr. old daughter and my mom

will take care of her while I am gone. So looks like I can make this

work.

I just found this group last week and I am ready scheduling surgery!

I have been blown away on how many woman have been going thru what I

have been going thru. As soon as I started emailing with everyone, I

knew this was my problem. It has been a HUGE blessing!

Thanks for sharing your info with me! Who did your surgery?

Cherie

> > >

> > > Hi Cherie,

> > > I had the gastric emptying bowel series as well as an endoscopy,

> > > colonoscopy, hydrogen breath test, lactose intolerance test and

> > > fructose intolerance test. I was also put on numerous drugs

such as

> > > Zelnorm and Xifaxan...all with no relief or diagnosis. I asked

my

> > GI

> > > if my symptoms could be from my implants and fungus based on

what I

> > > had read. He said he didn't put much stock into implant

illness,

> > > yeast or fungus and so I went ahead with the drugs and my health

> > > plummeted dramatically. The side effects alone were horrible

and I

> > > regret the harm they may have done to my body.

> > >

> > > I then contacted Dr. Kolb who said my GI probs were due to the

> > > implants and put me on Nystatin. Immediately my bloating

decreased

> > > and then I had the explant. Since then my digestion has

improved

> > > dramatically as long as I am on probiotics, enzymes and a

strict

> > diet.

> > > If I were you, I'd forget the GI guy and the toxic drugs, go

the

> > > natural route, and start detoxing to prepare for surgery. - PH

> > >

> > > --- In , " cannst42 " <cannst42@>

wrote:

> > > >

> > > > Hi Everyone,

> > > >

> > > > I am seeing my Gastroenterologist on Wednesday in San

Francisco

> > for the

> > > > results of all the tests I had done last month. I already

know

> > that my

> > > > Gastric Emptying test came out normal (even though my test

here

> > in

> > > > Sacramento did not) but I need to find out about out the

results

> > of the

> > > > rest. Now that I know this is all caused by my implants, do

I

> > want to

> > > > tell them about this and that I'm having them removed? I am

not

> > sure

> > > > as of yet if they will agree with me. If they give me a

> > diagnosis and

> > > > either want to do more tests or try more meds (which really

> > nothing I

> > > > have tried yet helps) do I go forward with them or hold off

until

> > my

> > > > implants come out? I would rather use my money for my surgery

and

> > trip

> > > > to Denver. My insurance has been paying for the S.F. doctor

just

> > not my

> > > > traveling expenses.

> > > >

> > > > Thanks

> > > > Cherie

> > > >

> > >

> >

>

September 3, 2007

Cherie,

Dr. Kolb in Atlanta did my explant. You might want to check out her

protocol at www.plastikos.com for recommendations on detoxing and then

check w/ Dr. Huang before beginning a supplement or therapy. I've

heard good things about Dr. Huang from others on the forum.

I don't know your symptoms other than the GI problems. I'd follow Dr.

Kolb's diet recommendations and work on killing the yeast w/ Fungal

Defense. Are you taking probiotics to get some beneficial bacteria in

your gut? A lot of women also recommend drinking kefir (making your

own is best but if not you can buy the organic plain kind).

Yes, it's amazing how many of us have suffered for too long because

the medical community refuses to believe there's a connection. So

glad you found out the truth and can begin healing. Hang in there. - PH

> > > > >

> > > > > Hi Everyone,

> > > > >

> > > > > I am seeing my Gastroenterologist on Wednesday in San

> Francisco

> > > for the

> > > > > results of all the tests I had done last month. I already

> know

> > > that my

> > > > > Gastric Emptying test came out normal (even though my test

> here

> > > in

> > > > > Sacramento did not) but I need to find out about out the

> results

> > > of the

> > > > > rest. Now that I know this is all caused by my implants, do

> I

> > > want to

> > > > > tell them about this and that I'm having them removed? I am

> not

> > > sure

> > > > > as of yet if they will agree with me. If they give me a

> > > diagnosis and

> > > > > either want to do more tests or try more meds (which really

> > > nothing I

> > > > > have tried yet helps) do I go forward with them or hold off

> until

> > > my

> > > > > implants come out? I would rather use my money for my surgery

> and

> > > trip

> > > > > to Denver. My insurance has been paying for the S.F. doctor

> just

> > > not my

> > > > > traveling expenses.

> > > > >

> > > > > Thanks

> > > > > Cherie

> > > > >

> > > >

> > >

> >

>

September 3, 2007

PH,

No, I have not been taking any probiotic's but I found that I do have

some. Its called PB8 -Pro Biotic Acidophilus and I also found Daily

Essential Enzymes, should I started taking them now?

Thanks!

Cherie

> > > > > >

> > > > > > Hi Everyone,

> > > > > >

> > > > > > I am seeing my Gastroenterologist on Wednesday in San

> > Francisco

> > > > for the

> > > > > > results of all the tests I had done last month. I

already

> > know

> > > > that my

> > > > > > Gastric Emptying test came out normal (even though my

test

> > here

> > > > in

> > > > > > Sacramento did not) but I need to find out about out the

> > results

> > > > of the

> > > > > > rest. Now that I know this is all caused by my implants,

do

> > I

> > > > want to

> > > > > > tell them about this and that I'm having them removed? I

am

> > not

> > > > sure

> > > > > > as of yet if they will agree with me. If they give me a

> > > > diagnosis and

> > > > > > either want to do more tests or try more meds (which

really

> > > > nothing I

> > > > > > have tried yet helps) do I go forward with them or hold

off

> > until

> > > > my

> > > > > > implants come out? I would rather use my money for my

surgery

> > and

> > > > trip

> > > > > > to Denver. My insurance has been paying for the S.F.

doctor

> > just

> > > > not my

> > > > > > traveling expenses.

> > > > > >

> > > > > > Thanks

> > > > > > Cherie

> > > > > >

> > > > >

> > > >

> > >

> >

>

September 3, 2007

Cherie,

I would start them now if I were you, especially because it will help

lessen the antibiotics effects from surgery. It's likely that you

will need the probiotics (or kefir) indefinitely.

Basically, we will continue to have health problems if we don't

eradicate the bad bacteria and replenish w/ the good probiotics. I've

heard a lot of good things about PB8 on an IBS forum. I take Garden

of Life Primal Defense Probiotics. What works for one person may not

work for another. You just have to experiment...and it may take a

while before you notice improvement. Also, be sure to take your

probiotics on an empty stomach. I take mine first thing in the

morning and then right before bedtime. - PH

> > > > > > >

> > > > > > > Hi Everyone,

> > > > > > >

> > > > > > > I am seeing my Gastroenterologist on Wednesday in San

> > > Francisco

> > > > > for the

> > > > > > > results of all the tests I had done last month. I

> already

> > > know

> > > > > that my

> > > > > > > Gastric Emptying test came out normal (even though my

> test

> > > here

> > > > > in

> > > > > > > Sacramento did not) but I need to find out about out the

> > > results

> > > > > of the

> > > > > > > rest. Now that I know this is all caused by my implants,

> do

> > > I

> > > > > want to

> > > > > > > tell them about this and that I'm having them removed? I

> am

> > > not

> > > > > sure

> > > > > > > as of yet if they will agree with me. If they give me a

> > > > > diagnosis and

> > > > > > > either want to do more tests or try more meds (which

> really

> > > > > nothing I

> > > > > > > have tried yet helps) do I go forward with them or hold

> off

> > > until

> > > > > my

> > > > > > > implants come out? I would rather use my money for my

> surgery

> > > and

> > > > > trip

> > > > > > > to Denver. My insurance has been paying for the S.F.

> doctor

> > > just

> > > > > not my

> > > > > > > traveling expenses.

> > > > > > >

> > > > > > > Thanks

> > > > > > > Cherie

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

September 3, 2007

Cherie, You shouldn't have any problems taking them at the same time . . . but take them at different time of day. Probiotics work best one an empty stomach - first thing in the a.m. and last thing at night. . . Enzymes are usually taken before eating - Check the instructions on the bottle. Wait until you finish Fungal Defense before starting probiotics though. Hugs, Rogenecannst42 <cannst42@...> wrote: PH,No, I have not been taking any probiotic's but I found that I do have some. Its called PB8 -Pro Biotic Acidophilus and I also found Daily Essential Enzymes, should I started taking them now?Thanks!Cherie> > > > > >> > > > > > Hi Everyone,> > > > > > > > > > > > I am seeing my Gastroenterologist

on Wednesday in San > > Francisco > > > > for the > > > > > > results of all the tests I had done last month. I already > > know > > > > that my > > > > > > Gastric Emptying test came out normal (even though my test > > here > > > > in > > > > > > Sacramento did not) but I need to find out about out the > > results > > > > of the > > > > > > rest. Now that I know this is all caused by my implants, do > > I > > > > want to > > > > > > tell them about this and that I'm having them removed? I am > > not > > > > sure > > > > > > as of yet if they will agree with me. If they give me a > > > > diagnosis and > > > > > > either want to do more

tests or try more meds (which really > > > > nothing I > > > > > > have tried yet helps) do I go forward with them or hold off > > until > > > > my > > > > > > implants come out? I would rather use my money for my surgery > > and > > > > trip > > > > > > to Denver. My insurance has been paying for the S.F. doctor > > just > > > > not my > > > > > > traveling expenses. > > > > > > > > > > > > Thanks> > > > > > Cherie> > > > > >> > > > >> > > >> > >> >>

September 3, 2007

Cherie, I'd suggest having them send you the results of the tests . . . Then put off seeing the doctor until you've had time to adjust after explant and detoxing. . . Especially if money is an issue at all. AND . . . don't give them a chance to put bad dx's on your record. It may come back to haunt you if you need private insurance one day. Hugs, Rogene

September 3, 2007

Hi Cherie,

I think this is a tough call. I can only tell you what I have decided

to do in my similar situation.

My rhumatologist diagnosed me with lupus last week and wanted me to go

on some pretty strong medications... I told him I wanted to wait until

I had the explant surgery and had time to heal.

I will go to have a uterine biopsy this wed. If they discover cancer

cells, I guess I would make arrangements to have a hysterectomy in the

near future. (after my explant surgery though) Short of that, I will

put off any medications or further procedures until I have had my

explant surgery and time to heal and detox.

I'm sure once you know more from the results you will make a decision

that is right for you. I might wait to do more tests etc...

As far as telling your doctor....I would tell them that you are having

your implants removed because of some problems but I'm not sure I

would tell them you believe they are the cause. I found my doctors to

be very defensive about this and decided it would only cause me more

frustration to argue about it.

I do know there are good doctors out there that really know implants

are the problem.. I'm just not sure that they are in any majority.

Keep us posted.