Bonnie

[Guest guest]

Hi Bonnie, glad to hear you are doing so well. I wish I had seen the program

on a liver transplant also. If anyone taped it please let me know. Hope

your knee surgery goes well. I had to have one done about 10 years ago, hurt

it playing softball. Nothing to it but I did have to stop playing softball

which I dearly loved. Take care and God bless. Genny/Jodi's Mom/AIH

[Guest guest]

Hi Bonnie,

How did you get involved with the organ donation program? I am interested in doing that.

Thanks

Rosemary

[Guest guest]

Way to go Bonnie, keep up the good work.

Genny

[Guest guest]

Congrats on 6 big years...that is wonderful....

Luanne ty's mom

[Guest guest]

Bonnie: Jodi had a severe case of Mono when she was 16. They say if you

have the gene that they think it takes a virus to trigger the AIH. I think

this must be the case because I have read in the group where several people

had Mono.

Genny

[Guest guest]

In a message dated 12/30/01 9:35:24 PM Pacific Standard Time, Babycolt98102690@... writes:

Bonnie: Jodi had a severe case of Mono when she was 16. They say if you have the gene that they think it takes a virus to trigger the AIH. I think this must be the case because I have read in the group where several people had Mono.

Genny

Genny, of course you have much more experience with this than I do. From what I read, AIH can be triggered by one of several viruses, by certain chemicals (including prescription or OTC drugs, herbs, or excessive vitamins), or by prolonged stress.

Harper

[Guest guest]

Hi! Bonnie - I live in Oneida about 25 miles from Syracuse. I didn't realize

there

was someone from this area in the group. Where did you have your transplant

done? I am looking for a hepatologist, do you know of any near by? Bonnie,

so glad to know you. Hug's, Hewitt

[Guest guest]

Hi , (Hewitt)

I had my transplant done at the University of Pittsburgh's Presbyterian Hospital. ( At the time, my gasto suggested that I go to either Rochester, Cleveland, or Pittsburgh. Rochester's liver program was in its infancy at that time and Cleveland seemed a little farther away than Pittsburgh, so I opted for Pitt. Also, I knew that Pittsburgh was world renowned for its research and expertise, although Cleveland is now an excellent transplant center also.) We have no hepatologists in Elmira, but I think you might find one either in Syracuse or Rochester. Syracuse would be closer to you. I was treated by a gastroenterologist during the 10 years I had to deal with AIH prior to transplant and wish there had been a hepatologist I could have consulted with in my area.

My daughter's boyfriend lives in Rome, which I believe is close to you. Maybe sometime when the weather is nicer I can drive up and we can meet. Hope you are doing well.

Take care, , and contact me anytime you wish. If you wish to email me privately, you can do so at: Bonmanpat@...

Bonnie P.

AIH and post transplant

[Guest guest]

Bonnie:

Don't worry that Dylan is " too old " to see good results while in his

band! 8 mos is definitely young enough yet! My daughter didn't get

her DOCband til she was 11.5 mos old with very good improvement. I

am glad his skin is better & he's back to wearing it regularly.

Good luck at the store with him! I'm sure everyone will be nice!

Let us know how it goes/went.

Debbie Abby's mom DOCGrad

MI

Bonnie,

> Good news that he is sleeping in the band soundly- some kids don't

adjust to

> that so I think that's a great sign. I think your second guessing

yourself

> because you are probably overwhelmed by a sense of sadness- to see

your child

> have to wear it is not easy at first. I was online months before

we got the

> DOC band, saw everyone's cuties online and I was still not prepared

for my

> reaction- I burst into tears. But then reality sets in, you

realize how

> awfully lucky you are and that this is so minor, that you thank God

that this

> is all you have to deal with and move forward. It will take a week

maybe,

> and you'll start letting your head get more involved, and less

heart. Keep

> on top of every aspect of therapy- checking for signs of tightness,

red

> marks, irritability, progress. You have to be sure to educate

yourself so

> that you can spot things and ask questions that have you

concerned. Some

> helmets are only as good as their orthotist, so keep yours on

his/her toes at

> all times!! Good luck to you all and please keep us posted! Hang

in there,

> you'll get over the initial shock and soon you'll think he looks

strange

> without it!

>

> ' Mom

>

>

[Guest guest]

Yes--have no thyroid now--was surgically removed in 1992 and am

entirely dependent on thyroid hormone. Just started Armour

(a generic) and can tell a difference from synthetic hormone

within two weeks!

I guess quite a few conventional endocrinologists will not

prescribe Armour ( Armour comes from pigs) and

probably because it did not used to provide a regular dose.

But it was standardized about 6-7 years ago and now does

provide a regular dose. The exact info is on Shoman's

aboutthyroid. com (There might be a period in there)

Actually, the natural Armour and the synthetics are different;

the natural is both thyroid hormones, T3 and T4. The synthethic

is just T4 and depends upon the body to convert some of it

to T3 as needed. The controversy that has now arisen, is

that more docs are aware that for various reasons, this conversion

is not providing enough T3 for some patients--and that's the one that makes you active. I'm sure someone who sees this is going to get checked,

have something wrong, need thyroid hormone and have a doctor

who will only prescribe synthetics. Synthetics work for many

people, but they contain dye and some contain talc. Chances

are you will be on thryoid hormone the rest of your life--so here

again is another risk. . .do you want to put dye and talc in your

body every day? Do you want to wait and see if synthetic hormone

works--it takes some six weeks to find out. Does your physician

even prescribe Armour or one of the naturals? (BTW, Armour and

others like it are less expensive) Also, synthetics do not contain

calcitonin--I don't really think I can explain what this does, but it

is some type of calcium regulator.. In any event, if it's supposed

to be there, I want it there.

Armour was the first thyroid hormone replacement before synthetics

came on the market. Some docs changed their patients from Armour

to synthetics at that time--and many patients asked to go back to Armour.

My own experience was not good with synthetics--I had to an integrative

MD to get Armour--actually, a good switch.

I understand that it is more difficult to adjust the thryroid's "speed" when

one still has functioning gland; what the gland puts out can change from

time to time, especially with autoimmunity. Having an organ-specific

autoimmune disorder of the thyroid, is not the same is having a systemic

autoimmune disease. Technically, it is the immune system that is malfunctiong

that causes the attack on the thryroid. And, most of the time, it is the only attack it causes.

As it does take some people a few weeks to regulate, it would be well

to get this checked a.s.a.p.

If you have other questions, I''ll see if I can answer them--have many books

and research papers on thyroid.

Bonnie

[Guest guest]

The doctor I talked to about switching from Synthroid

to a natural told me that Synthroid was perferable

because the dose could be regulated very closely.

True or not, I don't know. I do know that my heart

started beating right after quitting Synthroid. I'm

going to ask for a TSH test on my next visit and see

if stopping is making a noticable difference. I was

cautioned not to stop taking it . . . but my gut tells

me I should.

Rogene

__________________________________________________

[Guest guest]

Rogene:

That's exactly what my doctor told me--and many tell

their patients. . .there was a time when Synthroid was

supposed to be more stable in daily dosage--but Armour was

standardized 6-7 years ago so that it is a stable daily

dosage now also (not that anyone seemed to be having a

problem before that)--many doctors are unaware of this fact.

Synthroid, as it turned out through research was no better

than the others that it was touted to be. (good marketing)

Here's a kicker no one knew--none of the thyroid hormones

were FDA approved! As of the last couple of years, they

are getting approval--there has been a class action lawsuit

re Synthroid. If you have a cynical sense of humor--an unapproved

device caused an illness for which an unapproved medication was

required!

I believe very strongly in one's instincts and intuitions about

the body--on the other hand, I've read enough about the

thryoid to believe that totally dropping the med will have some

repercussions. Why don't you find a preventive/integrative

physician who will retest, start a natural hormone replacement,

and is willing to watch and tweak it to be right for you? There is

a conversion from the amount of synthetic to the amount of

natural hormone (from mcg to mgs) that he/she must make so

he/she should be real familiar with doing this so that you will keep functioning as smoothly as possible. Your local healthfood store can

usually tell you who some of these practitioners are--some are MDs who

practice integrative medicine, some are nutritionists, some are DOs--whatever

is comfortable for you. Another person who can tell you, if he/she will,

who prescribes it is the pharmacist.

Finding an endo, who will prescribe Armour is more difficult and in my opinion, preferred, but if you find someone else

who is real thyroid conscious, that's OK too.

It sounds as if your meds needed to be adjusted--tell your new doc

everything. . .tests, meds, physical complaints--sometimes your physical

reactions are what they have to go by--there is less known about the

thyroid than we have thought. And you don't have to wait until

your next appt to tell you doc if the med isn't just right--call the

office. Very often a physician can tell you what you need to

know over the phone. A few have started doing this by e-mail.

Bonnie

[Guest guest]

PS--When I forget to take my thyoid hormone, my

heart beats harder also; I think this is due to

at attempt by the nervous system to do more

work than normal--many people go so far as

to have "anxiety" without enough med. Anyway,

you might feel more active without the replacement

but your system is overworking itself to make

up the difference and after a while will undoubtedly

show another effect from overwork.

[Guest guest]

Beck, thanks and you're welcome.

Bonnie (mom to , Winn & Lilly)

[Guest guest]

Thank you. Everything in there was right on target.

Bonnie

[Guest guest]

I wonder what Wood would think if it was his Mother, wife, girlfriend or sister who was one out of a hundred to get cancer. What a prick.

-Marie

[Guest guest]

Hey ya Beck. No not yet. We go tomorrow. I'm armed with tons of paperwork and questions for the pediatrician. This poor woman, I feel for her. LOL I'll let you know either tomorrow night or Thursday. Thanks for asking and thanks for reminding me to ask - it's now officially on the list.

Bonnie (mom to , Winn & Lilly)

[Guest guest]

Do you think that in some women the capsule could still be a source of the brain fog later after explant if they were left in? I think in some cases they could be. I also wonder if you think that maybe your body has broken down enough of the capsule over the years that the symptoms have lessened?

Please tell me what you think about the capsules being left inside as a source of continued and lingering health issues.

Thanks Bonnie your a great source of knowledge for this site!

Hugs

----- Original Message -----

From: Bos@...

Sent: Saturday, August 03, 2002 1:03 PM

Subject: Re: Bonnie

--Yes still have capsules (lots of them) and one set of implant envelopes--apparently this is not the source of the brain fog since mine is gone. I outlined my thoughts about this in another post about the antiphospholipid syndrome--if you have any further questions that I may not have covered, please give a holler and I'll do my best. Bonnie

[Guest guest]

:

Hi. I agree, Bonnie shares a lot of good info here.

Take care.

LM

[Guest guest]

I think you mean "thickness" rather than "thinness". . .

Anything that causes the blood to flow slower or tiny vessels

to clog--whether it's yeast or primary antiphospholipids--

would not matter; it is going to affect the brain. In our situation, it seems that one could easily have both. (I think our culture in general, has too much

yeast--and it feeds on sugar)

Dr. Kolb will probably have a better answer. .

Bonnie

[Guest guest]

The most common treatment that works for brain fog is treatment of systemic Candidiasis but for those who continue to have it I have found that therapies that thin the blood and proper hydration also help. It may be that other forms of fungus that are less susceptible to Diflucan also cuase brain fog. Candidiasis produces over 70 alcohols and aldehydes some of which most likely cause brain fog. Most of my patients see relief within 20 days on Diflucan but it can recur so I have used other therpaies. Again, it is critical to be treated with anti fungal therapy around the time of explant or one can become very ill. Dr. Blais keeps finding fungus in the implants so not to recognize and treat this is not good medicine. .

-----Original Message-----From: Heer [mailto:idagirl@...]Sent: Sunday, August 04, 2002 11:04 AM Subject: Re: Bonnie

Dr Kolb,

I think we have talked about brain fog now for several years and most of the time your response has been that is it caused by yeast and that it should be treated with diflucan. Are you now saying that blood thinness could be another reason for the brain fog? What other than water would you recomend that is natural to treat this condition? Is this what you had? Or was it yeast? Or was it both?

Thanks,

----- Original Message -----

From: Dr. Kolb

Sent: Saturday, August 03, 2002 7:16 PM

Subject: RE: Bonnie

I agree that the fog is often relieved with blood thinners and hydration. I would recommend a water such as Penta that is microclusted in order to increase cellular hydration. .

-----Original Message-----From: Bos@... [mailto:Bos@...]Sent: Saturday, August 03, 2002 1:32 PM Subject: Re: BonnieYes--that is what I'm saying. The "brain fog" is mentioned frequently and I cannot help but see that for some it seems to be one of the first, if not the first, problem noticed--I wonder if we all mean the same thing by it. An occasional loss of memory was my first noticeable problem--my daughter noticed it before I did. The actual "fog" feeling (euphoric, not unlike being very high on pot or hash) did not begin until after infection of new implants. Two small strokes occurred before the brain fog and the TIAs or TIA-like nightly episodes started before the brain fog, but continued through it. This fog, accompanied by short-term (and some long-term) memory loss, was intense to the point of being unable to find one's way home a block away from it; mornings were the worst and as the day' went on the fog was somewhat less by evening. The relief of this fog came with aspirin/blood thinning. I now take one Bayer Children's Asprin daily. There is a syndrome found with anyone I have asked called antiphospholipid syndrome--I had the antibodies for it. While there are many types of antibodies, the ones usually found are anticardiolipid antibodies. And while it is a fairly new discovery (in the US) some physicians know all about it-- I was tested in 1994. I don't know how he will respond, but one might contact Dr. in Houston, re this syndrome as he knows considerable about it. Dr. Kolb recently interviewed him and may be able to tell you. This is not something that just comes with breast implants--it is a "thickness" of the blood, which is believed to be set off by an infection . . .i.e,. the blood gets even thicker , creates antigen-antibody complexes and starts clotting in small veins. It can start creating problems, even without infection, with dehydration, birth control pills, (and HRT) immobility and smoking. In it's mildest form it can affect the very many small vessels in the brain causing some memory loss. The center of the face is also filled with a ton of small vessles. . .it often affects the vessels of the eyes also (and mine did) and nose (mine did) and sinuses (mine did); it can affect tiny vessels in different places and this can differ with people. A test of 1,000 people who were showing some symptoms found that 530 of them had the primary antiphospholipid syndrome--it is not rare. (The FDA has a registry at a number of universities for it but apparently is not making it real public--it speaks to a number of vascular "diseases") This used to be called the "Lupus anticoagulant" but it has since been found to be different from it--although some have both this and Lupus and therefore the anticoagulant. If one were never suspected to have Lupus, however, one would not test the blood for it or have any reason to thin the blood. I'm convinced it plays a role in this whole implant ordeal--silicone or saline, with or without infection and further clotting. I think it possibly plays a role in MCS and metal sensitivity/allergy also--the thick/sticky blood holds on to things that enter the body for a longer time--and the longer we hold on to them, the more chance they affect us. I haven't heard of brain fog reversal, i.e, getting worse, but can see, if one had this particular syndrome, where that might occur. Were you the person who thought exercise would be helpful ?(I'm convinced our instincts are leaders) If one has this thicker blood, I'm sure it would be helpful to that condition, but this is not something that can be "cured" (yet, that we know of) As immobility is associated with it it makes sense that exercise would be helpful--it would get the blood flowing faster. I am virtually certain my daughter has this condition also--she becomes "thickheaded" if she doesn't work out every other day--fairly intensely. And she has had a desire for water since she was born. I have started her on the Bayer, without even testing. It is usually recommended to patients after a bypass surgery. (Thick blood is probably the reason the patient needed the surgery to begin with) The first thing you may wish to do, is find out if this is your problem. You can have an antiphospholipid antibody test (but you may not have antibodies or may have had them and now they are gone) or see if the blood is hemoconcentrated with a test for diabetes insipidus; and there is a test, called the INR that I believe is done in the US, that shows blood thickness. I haven't had it yet. I find it interesting that a mild and sometimes very subtle dehydration has been noticed by some BI patients--I had this years prior to the overt implant problems and noticed it only by the amount of fluids I seemed to want. Dehydration was not mentioned then. In most cases, one Bayer Children's Aspirin daily does the trick; in more severe cases (and it doesn't sound as if you are one) coumedin/wayfarin is used. I find it mindblowing that something so simple can cause such eventual problems, and be handled with a children's aspirin. ( A lot of medical procedures could be avoided if this condition is discovered and handled early on--so it probably won't ever be made real public in the US) A clue to this problem can be childhood headaches, spontaneous abortions or lower leg pain when walking--one may not necessarily have any of these, but if one did--it's almost assured that she/he has this syndrome. Drink lots of water--try to drink about 64 ozs daily--not from the tap, of course. Even when the fog is finally gone, it might be wise to continue the Bayer (only Bayer) as this sydrome is felt to contribute strongly to athersclerosis and other vessel problems; as I'm sure you know, this can be happening throughout a lifetime and one may not know it until a catastrophe occurs. I hope this information is helpful; please don't hesitate to ask me questions as I may have left something out. There is a site at which one can order a booklet ($8 or $9) which tells more about this--they send it out quickly. www.hughes-syndrome.org (It is also known by the name of Syndome and I recently met someone who knew it by this name--her friend had it) Bonnie

[Guest guest]

Dr, Kolb, you said that women who are going in for explant should be treated with anti fungal med around surgery, as the the implants are being found to have fungas.

Three questions:

1)Will you treat me for the fungas before or after surgery? Should I have my doctor start me on it before, or will you after?

2)My 2 year old son has always had this jock itch that comes & goes since birth, had ringworm twice, and now for the past year, a case of athletes foot that after three presciption creams, and washing will not go away. It's like this fungas keeps coming back in different forms. I also have cut out sugar, citris, and banana's in the last three weeks, and it just is holding on. Even a skin doctor told me that this is uncommon at his age, with no family or friends having athlete's foot. I know when I was pregnant, I must have had 4 or 5 yeast infections in my full term, and after I had him, I had the Bell's Palsy, then the Hashimto's , and now RA. Do you think that breast feeding for only 4 days, or just being pregnant with him with implants could have caused this hard to treat fungal infection he is experiencing? And could all my problems also be from the fungas also?

3) I will be seeing Dr.Mercola in two weeks, where I will have a live cell analylisis done under a microscope, and shown to me on a TV screen, will any of this yeast or fungas show up in my blood?

Thank you, Palanca

[Guest guest]

I guess you kind of already answered my other email. I do believe that this blood issue could explain allot of things but yes I agree that yeast plays a role in our health, both good and bad.

Hugs

----- Original Message -----

From: Bos@...

Sent: Sunday, August 04, 2002 9:40 AM

Subject: Re: Bonnie

I think you mean "thickness" rather than "thinness". . . Anything that causes the blood to flow slower or tiny vessels to clog--whether it's yeast or primary antiphospholipids-- would not matter; it is going to affect the brain. In our situation, it seems that one could easily have both. (I think our culture in general, has too much yeast--and it feeds on sugar) Dr. Kolb will probably have a better answer. . Bonnie

[Guest guest]

LIve call analysis may show pathogens. I usually treat for yeast around the time of surgery unless liver function tests are elevated. Your son probably needs antifungal treatment and immune support. .

-----Original Message-----From: JULIEJJPALANCA@... [mailto:JULIEJJPALANCA@...]Sent: Sunday, August 04, 2002 10:39 PM Subject: Re: BonnieDr, Kolb, you said that women who are going in for explant should be treated with anti fungal med around surgery, as the the implants are being found to have fungas. Three questions: 1)Will you treat me for the fungas before or after surgery? Should I have my doctor start me on it before, or will you after? 2)My 2 year old son has always had this jock itch that comes & goes since birth, had ringworm twice, and now for the past year, a case of athletes foot that after three presciption creams, and washing will not go away. It's like this fungas keeps coming back in different forms. I also have cut out sugar, citris, and banana's in the last three weeks, and it just is holding on. Even a skin doctor told me that this is uncommon at his age, with no family or friends having athlete's foot. I know when I was pregnant, I must have had 4 or 5 yeast infections in my full term, and after I had him, I had the Bell's Palsy, then the Hashimto's , and now RA. Do you think that breast feeding for only 4 days, or just being pregnant with him with implants could have caused this hard to treat fungal infection he is experiencing? And could all my problems also be from the fungas also? 3) I will be seeing Dr.Mercola in two weeks, where I will have a live cell analylisis done under a microscope, and shown to me on a TV screen, will any of this yeast or fungas show up in my blood? Thank you, Palanca

[Guest guest]

Well--dairy has been a large part of my diet

since I was a small child--all of it (except buttermilk)

It was a large part of my mother's diet, and all her

sisters and my daughter's. None of us have had any

ill effects from it (high cholesterol, triglycerides, etc.)

HOWEVER--are all Type B blood. If one of the latest

nutritional theorists is correct re food and blood types,

this figures. This type of blood can do this throughout

it's lifetime; but, it is also the type most prone to autoimmune

diseases and there are none in all of my large family! ????

( This theory is where my daughter got her info

that possibly wheat was not good for her--tried eliminating

it and found a new life without the IBS and weight)

There is info on this theory at www.dadamo.com. This man

has now got handlers and is out to make the big bucks. If you are interested, just go for his first and basic info. There

is a test kit that one can send for to determine blood type

if unknown--it's only about $8 as I recall.

Imagine you are addressing the issue of calcium and with

all the additions and substractions to modern dairy products,

I don't know how much calcium we are actually getting from

these now. Except for cheese, I am totally into natural dairy

products.They cost more, but taste so much better and last so much longer that it probably comes out as a savings if one

were to calculate it.

I had more natural dairy products as a child--products that were

different from conventional dairy products now, and I cannot

help but believe that has something to do with bones--we

have no osteo in our family either. My mother and her sisters

were also big green veggie eaters--couldn't afford red meat and had

a vegetable garden and chickens.

I usually think of dairy more in terms of protein, than I do calcium.

A lot of calcium can be had from various green veggies--check into it.

Imagine mercola.com has a lot of info re foods-calcium.

How do I feel about it? If you don't have a lifetime of it behind you

and you would have to exert effort to include dairy in your diet. . .

skip it--get it from the greens.

Bonnie