Immune System

April 11, 2001

Hi ,

I started AP 1 month ago. Like you I did not have RA for a long time before

I started. I was diagnosed Nov. 2000 and started the AP in March 2001. The

only drug I take other than Minocin MWF 100 mg once a day is Vioxx. My

question to you is what dosage did you start the Minocin at? I asked my

doctor to up the dosage to 100mg twice a day MWF but he didn't want to do it.

I am not herxing at all. The only worsening of symptoms I have is a small

increase in morning stiffness. No flulike symtoms of antything I have heard

others speak of. Am I taking too little as I suspect I might be? I'm

starting to think he might not want to increase the dosage so it doesn't work

and I go on " regular " drugs. He told me when he wrote the scrip that he's

never seen it work. He only gives me enough pills to get me to my next

appointment which is every 4 weeks. Am I just just being paranoid????

Dee

April 11, 2001

I asked my

> doctor to up the dosage to 100mg twice a day MWF but he didn't want to do

it.

> I am not herxing at all. The only worsening of symptoms I have is a

small

> increase in morning stiffness. No flulike symtoms of antything I have

heard

> others speak of. Am I taking too little as I suspect I might be? I'm

> starting to think he might not want to increase the dosage so it doesn't

work

> and I go on " regular " drugs. He told me when he wrote the scrip that he's

> never seen it work. He only gives me enough pills to get me to my next

> appointment which is every 4 weeks. Am I just just being paranoid????

Dee, the Minocycline in Rheumatoid Arthritis trials used 200mg every day.

Why not ask him why would he not give a dosage that has a sucessful clinical

trial to back it up?

The reason most people start at a lower dose is that that they simply cannot

tolerate the high dosages. Also because Dr. Brown found that it caused less

drug sensitivity and side effects, and a higher dose was not always needed.

Most people on the list have learned out to start slow, but are usually able

to build up the dosage. Just my two cents. Can you not get another doctor?

forty-some percent of rheumatologists in a survey posted to the ACR regard

minocycline now as a valid first line treatment in RA. The

anti-inflammatory and cartilege-protective qualities of tetracyclines are

proven in studies. He should read the literature. I have some abstracts on

the subject filed away and if you want to see them, just ask. Liz G.

April 16, 2001

Dear Dee: Thought I'd add my 2 cents. I started on, and continue at, 100 mg. twice a day. I started with Minocin but switched to doxycyline (due to hyperpigmentation). Anyway, Dr. Trentham prefers to start patients who have had RA for 2 yrs. or less at this dosage because it provides the most success. Of course, it may be too much for some but this is what he generally prescribes for those considered to be in "early" stage of RA. It has worked out very well for me. I did not herx except when I switched to the doxy, and it was fairly tolerable and lasted about 1.5 months.

Babs

RA 8/98, DX 4/99, AP 11/99

200 mg. Doxycycline

125 mcg. Synthroid

50 mg. Lipitor

2 mg. Hytrin

Mestinon

Vits. & Misc. Suplmts.

March 2, 2002

In a message dated 3/1/02 7:28:32 PM US Eastern Standard Time,

aweber1@... writes:

<< roblems worse is because of the mold down here,

I was told that with my immune system so impaired >>

Hi Alyssa - I have mild asthma and big time allergies to mold. I live in

Philly so it's not quite as humid as New Orleans, but it can get bad in the

late summer and early fall. I used to take allergy shots which really

helped. I stopped them when the PA hit because of fear of interaction, but

you might benefit from seeing an allergist and having him/her consult with

your rheumy to see if that would help. Claritan also helps me a bit - and I

don't think that has any interactions with my PA drugs - but check with your

rheumy again before you take anything. There are also good asthma drugs and

inhalers that might help.

I really feel for you being away from your family. PA, for me anyhow, is

sometimes so difficult emotionally and it's hard when you are away from your

primary support people. I hope maybe some online support from this group

will help you know that you're not alone in this and anytime you're feeling

down or in pain, it might help to either " vent it out " here in writing or

read some of the posts. Some have been quite inspirational to me when I

thought no one else understood how I feel.

Hang in there and best of luck at school,

March 2, 2002

Alyssa, You are not the only one... I also recently developed this

problem... I am 27 years old and have had PA for about 5 years.. The

breathing problems for me first started developing right before christmas...

And they were worse in january.. I went from doctor to doctor and it seems

like they still dont know what the problem is.. They did a ultrasound of my

heart and that came back ok.. But my EKG was not normal.. And then they also

said I had bruised , or irritated lungs.. And we also have dangerous molds

in our house... We got this tested before I even developed these problems..

It costed us like $1500 to get our house tested for these molds.. I'm also

allergic to everything .. ( food and airborne ) But i dont really have

normal symptoms of Asthma.. It feels like my throat is clear all of the

time.. I just cant breathe and my heart acts weird.. Especially right when

i'm trying to go to sleep. I had this problem pretty bad today.. My heart

doctor said i could have a small hole in my heart too.. According to the

EKG... But i'm in the same shoes as you are.. Nobody seems to know exactly

what the problem is.. And it scares the heck out of me sometimes also when

the breathing gets really bad.. Went to the ER once already on december 27th

and they couldnt find anything...

mike

March 6, 2002

My daughter has been having a lot of breathing problems since last August,

way before she was diagnosed wit JRA. She has been to the ER 4 times and

nobody knows what is wrong. She seen a pulmonogist and all her lung function

test were normal. They are doing allergy testing this month, I think its all

related to the PA, but of course they wont listen to me IM just her Mom.

Funny how it all came to happen within the last 6 months though. Crystal

October 3, 2003

I forgot to say, that my son is not vaccinated.

Dagmar.

[ ] Immune System

What could I give my son to support his immune system.

He is 5 1/2 years old 55 lb. I chelate him with 12.5 mg DMSA and 25 mg ALA

(Andy's protocol 3 days on, 11 days off) and give him Vitamin C, Vitamin E,

Vitamin A, Vitamin B, Magnesium, Calcium, Zinc, Milk Thistle and Glycine. In the

last couple of months he had frequent sore throats and colds (one following the

other). He now has cold sores and yet another period of snottiness and coughing.

I just had a CBC and liver function test done with him. His neutrophils have

gone up slightly since the last one ( they have always been alright).

Is there anything you can suggest I can give to help him.

Dagmar.

October 3, 2003

Hi,

How about adding zinc, omega's, Lauricidin? Just off the top of my head,

these seem to help many.

You may want to see my post of what Life Extension Foundation recommends, or

go to lef.com.

I will look forward to other people's suggestions. I know I have lots to

learn.

in Salt Lake City

October 4, 2003

In a message dated 10/3/03 1:15:47 AM Central Daylight Time,

dagmarjahr@... writes:

> In the last couple of months he had frequent sore throats and colds (one

> following the other). He now has cold sores and yet another period of

> snottiness and coughing.

>

These symptoms, especially the cold sores, makes me wonder if there is a

viral problem in your child now coming to surface as he becomes healthier/less

toxic. Have you looked at Lauricidin? It is an anti-viral, anti-fungal,

anti-bacterial and immune modulator that does not harm good bacteria.

Another thing to consider/rule out is that he is reacting to one of the many

supplements you are giving him.

Gaylen

October 6, 2003

> What could I give my son to support his immune system.

Hi Dagmar,

I honestly don't have a clue what to recommend.

However, when I think about supporting immunity, my mind

goes off in all different directions!

There are things like transfer factor and colostum that

provide things that create immunity (we think).

There are " shallow " immune herbs, used for fighting off

immediate immune threats (read: a cold), such as

echinacea (and goldenseal, but it is close-to-endangered)

There are " deeper " immune herbs such as mushrooms

(shiitake, miatake (sp?), reishi...)

There are ANTI-viral and ANTI-bacterial things, such

as Rx drugs, herbs.

There are some procedures and treatments that increase

immune activity and/or kill pathogens, such as

a. things that induce heat/sweat/fever

b. HBOT

c. medical ozone

I think vitamins A and C are both useful for immunity,

and I take them sometimes if I'm sick or " coming down

with " something.

I'm sure there is much more, but that gives you an idea

of all the different directions my thinking heads in when

I think about it.

Moria

October 6, 2003

>

> > What could I give my son to support his immune system.

>

Dagmar,

I don't recall your original post, so I joined in on Moria's. I keep a

notepad by my computer and I write down anything I read that interests me

and that I think applies to or will help my child for future reference. I'm

just a Mom, so anything I share with you here you'd need to research for

yourself b/4 trying it. Here is what I've accumulated over time as things

that are good for or " boost " the immune system:

DMG

Ojibwa Tea

Probiotics

Arginine

Methionine

Glutamine

Again, these are just from my notes. Even with my notes, I always research

everything in greater detail b/4 trying it. I've always read very positive

things re: Ojibwa tea and probiotics; DMG doesn't suit everyone well; I've

seen next to nothing posted re: Arginine, and there may be varying opinions

(pro and con) re: Glutamine and Methionine. I'm not promoting anything,

just giving you some things to look into further. Good luck, KIM

October 6, 2003

I've read that people with autoimmune disorders should avoid immune

system " boosters " , such as echinacea. Do you think that would apply

to autism too?

--- In , " moriamerri " <moriam@e...>

wrote:

> --- In , " Dagmar " <dagmarjahr@e...>

wrote:

> > What could I give my son to support his immune system.

>

> Hi Dagmar,

>

> I honestly don't have a clue what to recommend.

> However, when I think about supporting immunity, my mind

> goes off in all different directions!

>

> There are things like transfer factor and colostum that

> provide things that create immunity (we think).

>

> There are " shallow " immune herbs, used for fighting off

> immediate immune threats (read: a cold), such as

> echinacea (and goldenseal, but it is close-to-endangered)

>

> There are " deeper " immune herbs such as mushrooms

> (shiitake, miatake (sp?), reishi...)

>

> There are ANTI-viral and ANTI-bacterial things, such

> as Rx drugs, herbs.

>

> There are some procedures and treatments that increase

> immune activity and/or kill pathogens, such as

> a. things that induce heat/sweat/fever

> b. HBOT

> c. medical ozone

>

> I think vitamins A and C are both useful for immunity,

> and I take them sometimes if I'm sick or " coming down

> with " something.

>

> I'm sure there is much more, but that gives you an idea

> of all the different directions my thinking heads in when

> I think about it.

>

> Moria

October 6, 2003

> I've read that people with autoimmune disorders should avoid immune

> system " boosters " , such as echinacea. Do you think that would apply

> to autism too?

Yeah, Gaylen brought up this point a week or so ago--- that

immune enhancers are not " good " for everyone.

My question is how you would decide if immune enhancers are

good/bad for a given person.

Anyone?

Moria

June 9, 2004

Hi Vicky

Sam is doing well on Colostrum from

_http://www.heavymetaltherapy.com/_ (http://www.heavymetaltherapy.com/)

Its very reasonably priced, cheap shipping, creamy tasting powder, mixes

well in yoghurt, frais or juice. Sam looks so much better since I started it on

recommnedation from another listmate - real peaches and cream complexion. I

beleive it also helps with yeast issues.

HTH

Mandi in UK

Hi all, we are doing very well with little one on Enzymes, probiotics

and SNT, just wondered if I could be doing anything else to build up

his immune system.

June 9, 2004

Kirkamn is good stuff but too expensive for me long term. We use a capsule

based one

_http://www.heavymetaltherapy.com/_ (http://www.heavymetaltherapy.com/)

about £13 for 120 capsules, Sam gets between 2 and 4 per day depnding on how

many

yoghurts he has, because thats what we put them in

Mandi

Hi Mandi, thanks for the reply, I was wondering about colostrum but

call me a silly moo, I am concerned about BSE, are you getting it

from Kirkmans

Thanks Vicky.

June 9, 2004

> Hi Vicky

> Sam is doing well on Colostrum from

> _http://www.heavymetaltherapy.com/_

(http://www.heavymetaltherapy.com/)

>

> Its very reasonably priced, cheap shipping, creamy tasting powder,

mixes

> well in yoghurt, frais or juice. Sam looks so much better since I

started it on

> recommnedation from another listmate - real peaches and cream

complexion. I

> beleive it also helps with yeast issues.

>

> HTH

> Mandi in UK

> Hi Mandi, thanks for the reply, I was wondering about colostrum but

call me a silly moo, I am concerned about BSE, are you getting it

from Kirkmans

Thanks Vicky.

> Hi all, we are doing very well with little one on Enzymes,

probiotics

> and SNT, just wondered if I could be doing anything else to build

up

> his immune system.

>

June 9, 2004

copper sebacate

> Hi all, we are doing very well with little one on Enzymes,

probiotics

> and SNT, just wondered if I could be doing anything else to build

up

> his immune system.

> Thanks in advance

> Vicky.

March 26, 2007

Ute & Geoff,

I have noticed this trend toward allopathic treatments: e.g., Mtx., Enbrel,

Humira etc... All to destroy the immune system. What's going on here?

www.bestdogcookies.com

March 27, 2007

The tendency to use treatments that suppress and/or destroy the immune

system has mainly two

reasons.

1) Since the immune system is often involved in creating pain,

suppressing the immune system

brings early relief for the patient. This would be good if it would also

combat the cause of the chronic

diseases. However, the opposite is true.Allopathic medicine cures nothing.

2) By bashing the immune system, these medicines create a lifetime

customer for the pharmaceutical

industry. The patient is hooked. In addition, the patented drugs have an

astronomical profit margin.

Don't let anybody tell you that this is to cover the cost research

because the industry spends

TWICE as much on advertising than research.( 5.8 billion vs 2.6).

3) Unfortunately, antibiotic treatments make things worse before it gets

better. So the patient faces

the choice of 'easy way' for ever ( with all the dangerous side effects

of drugs) and no cure ,or temporary

inconvenience and suffering followed by remmision and possibly cure.

4) Pharmaceutical industry spends billions on immune bashers and nothing

on antibiotic research

because all the immune bashers bring lifetime customers ( profit);

whereas antibiotics bring only a short term

customer with small (normal) profit. In other words it's all about the

money.

Good Luck

O' Conchubair wrote:

>

> Ute & Geoff,

> I have noticed this trend toward allopathic treatments: e.g., Mtx.,

> Enbrel, Humira etc... All to destroy the immune system. What's going

> on here?

>

> www.bestdogcookies.com

>

March 27, 2007

Discussion on the use of long term low dosage of antibiotics for the

treatment of auto-immune diseases such as Scleroderma, LupHi ! Geoff

here.

You wrote:

" I haven't been following this thread closely, but didn't Dr. Brown say the

AP works for about 80% of people? "

I didn't post to infer the group should/should not support, etc. My intent

was to point out the differences in the approaches:

If one elects to stop the pain by subduing

the immune system, they will " feel better "

while they get worse.

If one elects to attack the root cause,

which includes building up the immune system,

they will likely go through bouts of pain during

the process.

I personally think it's important for people to know their objectives in

choosing treatments. I have near and dear friends in both camps -- some

just want the pain to go away so they can get on with their lives. Others

want to get well and are willing to do whatever it takes to get there.

I wish I could say my experience reflects people eventually gravitate to

only one camp, whichever camp that may be, as their lives go on and the

various treatments and flavors take their tolls, but such is not the case.

As to the 80% question, I cannot answer it directly. However, I can infer

from experience, the commentaries of others, and commentaries of various

professionals in the field that this could well be a " commitment " question.

That is, does the patient commit to doing whatever is necessary for however

long it is necessary, including making lifestyle changes? Or do they commit

only until they feel better, slip back into their old ways, and hang onto a

lifestyle that is slowly killing them?

Dr. Mercola takes this a step further since he has ventured almost entirely

into immune enhancement through lifestyle intervention as what he says he

believes is the key to the crux of the matter. Browsing his Web site,

http://www.mercola.com/2000/aug/27/Rheumatoid Arthritis.htm, you can see he

is very straightforward in his comments that those who have difficulties

making lifestyle changes are likely to stay sick.

That said...

Regardless of their choice, all need support. However, there was and

continues to be ample, even substantial, support through various

organizations funded by pharmaceutical companies, tax dollars, hospitals,

physicians and trusts for those wishing to pursue the " no pain - live with

your disease " option. Their flyers populate rheumatologists offices across

the land, their advertisements were, and are, in every magazine, newspaper,

journalistic " article " , television advertisement and radio show.

There was zero support for people who did not follow that path.

Such is the basis for this group: to provide support for those on " the other

path " who, without this group, had no support at all and whose only helper

suffered outright vilification by the very M.D's. treating them.

Geoff

Acts 2:39

March 27, 2007

Dear friends,

There has always been some discussion on this list concerning conventional

drugs. A lot of people come to AP while still on allopathic drugs, and some

people feel that they wanted or needed to combine treatments. I have

absolute no problems with people's choices. We all do what we think is best

for us. My concern about the extent of recent discussions about

conventional drugs here is that it clouds the purpose of this list to

support people on AP. I don't know if I could have pursued the protocol

without the support of members of this list who walked me through the awful

first couple of years of " getting worse before getting better " and " two

steps forward - one step back " . Now a new member of this list may get the

impression that, off course, we all are on the standard fare of drugs while

we see if AP works for us. Geoff stated so clearly that those treatment

options are very different as shown by the basic aims of either boosting or

suppressing the immune system. You sort of can't have it both ways. Neither

can this list be all things to all people. There is lots of support out

there for people with rheumatic diseases doing mainstream drugs, but very

few for pursuing AP.

I would like to see keep the intent of this list clear, so we can support

people on the difficult, but very hopeful path of healing that AP offers to

many (though not all).

Take care,

Ute

March 27, 2007