Re: appointment this week

February 1, 2001

Thanks Dietrich

I will definately make an appointment soon when things start to clear a

pathway. I have had so many things to deal with this week, unbelievable.

My mother called and told me that she was just diagnosed with multiple

myeloma, so not only am I incredibly sad, I am scrambling to find treatments

for her. On top of that my son is having increasingly more seizures, and

of course, I am left to put him back on pharmacrap. I hate the stuff. I

think the parasite picture is a possiblity, both in the brain and the gut.

I also believe that because my mother has this cancer so closely tied also

to the STEALTH VIRUS HHV8 (www.ccid.org ) I think I should test for this,

since they have a supposed protocol and also working on their andecdote

epione. If you go to the myelma page on the ccid site, go down about four

paragraphs and read and weep, in which they are tying in AUTISM to this

cancer, believe it or not! My mother and I both had the Polio sugar cube

way back then, and I believe this is connected. Ok, with that knowledge, if

or is not absorbing anything I give them, would it be right for

me to get homeopathic parasitical solutions? I have always felt there is a

bigger picture as to why my kid do or don't respond to what I give them at

times. There needs to be more good going in and at proportions probably

that I am not aware of. For instance a sort of protein goodie drink full of

nutrients for instance? Dr Joffa in particular has stated that I should get

a stomach x ray to see if there is inclusions, twists or bezoirs of some

type, since my son is often having problems with " smooth muscle control " to

put it bluntly. He wets his bed at night on occasion, and is grunting on

the toilet all the time. I am seeing or going to be seeing Dr Joffa, who

is a world famous homeopath and I felt good about his thought patterns. AT

least in the meanwhile till I can see you , for it is apparent that

something is eating my sons body, before he eats anything that sustains him

and robs him of all the things nutrients can do for him? He looks like a

freakin biafra child, to put it bluntly. I literally can take my two hands

in a circle and crinch his waste, and when I bathe him he is so skinny that

his sensory system is also very immature, for instance, lifting his arm up

on one side, it is stiff and obviously immature reflexes. Both are off

milk, and do ingest at times little bits of gluten here or there, but not to

excess. Gluten is the one hard thing that I cannot in my mind cross since

my son is already such a thin kid and has dietal difficulties, things like

texture or taste or for that matter appetite.

I know there is not much you can do via email.... Nothing is seemingly

working, other than small breakthroughs of my son with moments of " im here " .

Mannatech products have really helped the most. AS for my daughter, she

continues to go down a progression road and is gaining lots more language

and abilities although her tendancies towards OCD are apparent (which I

think is becuase she was my strep throat baby). The difference may be

remarkable since there was some deep levels both in utero and a wee babe

neurological attacks in my son via either a stealth virus or EBV and the

obvious neurological sequale after a DPT.

Do you ever plan on coming down to the portland oregon area? If so, I would

really like to set up a time when that happens? If ever? IF not, I will

venture up north.

Thanks Again-

Re: appointment this week

>Dear Kathy,

>

>I just bounce back from the flu, so I keep my answer short. I cannot say

>anything since I base much of my suggestions on 1. what I find in my exam

and

>2. by observing the patient interact with me, the staff, the environment

and

>themselves. I can see from the program that you send me, however, that it

>seems to lack a clear direction and is pulling the biochemistry into too

many

>differnt directions at the same time. That usually does not achieve the

goal.

>I give you an example: if your child or teenager, for example, has

intestinal

>parasites, many of the dense nutrients you are feeding him are metabolized

by

>the parasites into unpredictable breakdown products that may make him more

>toxic then he already is. They may also feed the parasites more then the

>patient. I suspect from the program, that those types of basics are not

>covered yet. There is no reliable way of testing for parasites in the US,

>other then combining a hands-on exam, with clinical observation and clues,

>intuition and some type of biofeedback-testing (EAV, muscle terting) and

>maybe lab diagnosis (has to be done with the stool no older then 20

>minutes...). Then there are the other important issues: neurological foci,

>geopathic stress, food allergies, emotional issues, the occlusion etc. etc.

>which I have to rule out, before I ever commit to a nutritional program or

>detox program

>

>I hope things go well for you. Let me know, when I can be of assistence to

>you.

>

>Sincerely,

>

>Dietrich

April 13, 2011

Jeannette,

The goal should always be to be pain free and to get the disease under control.

All the new research says that the more aggressive you can be at the beginning

the better chance of making the disease go away forever. There are plenty of

good medications out there to help with pain. And no, you don't want to go the

narcotic route--just a bandaid approach like the steroids.

Sulindac is an anti-inflammatory but it doesn't appear to be cutting it for your

daughter. There are other meds out there to take. Don't give her Ibuprofen/Advil

etc since she is already taking an NSAID but she can take Tylenol. Also ask your

doctor about Ultram on an as needed basis. It is similar to a narcotic for pain

relief without the addicting/icky effects of a narcotic. Also them the rheumy

you want to be more aggressive--explain how she is getting worse not better. And

ask him/her to start on MTX. It is a really good drug--just a slow acting one.

Ask the doctor to be aggressive and if you don't find the doc responding there

are other docs out there.

I know what it is like to watch your child suffer and be kept out of the things

she enjoys but you are fortunate that there are more drugs out there that can be

wonderful. Push for them. When my daughter started down this road there wasn't

much available but the amount of new medications out there is amazing and ever

growing.

Be persistent and let them know that you are wanting your daughter to be as

fully active as she can and the current med regime is not cutting it.

Good luck.

e, mom to 'joe' now 24 poly+

From: danmanley47@... <danmanley47@...>

Subject: appointment this week

Date: Wednesday, April 13, 2011, 2:30 PM

Hi everyone,

My daughter, Amelia has a follow up appointment this week with her

rheumatologist. I have a few questions to pose to all the parents who have much

more experience with this disease than myself; we just began this journey two

months ago. Amelia has been on steroids and Sulindac, but they are not helping.

I had to pick her up from school yesterrday because of pain in her hands and

knees; for the first time I have actually seen her cry from the pain. The

rheumatologist said she did not want to start her on narcotics, which I do agree

with, but this pain has totally taken charge of her life. She can barely walk,

and her hands are so sore at night I often have to transcribe her homework.

This is not to mention the many days of school she has missed. In your

experience, when do most of the rheumatologists finally make the decision to put

them on methotrexate? She is such a happy child, with an upbeat attitude, but

this is taking such a toll on her. She

is 13 years old, and should be out having fun with her friends, not stuck in

the house with me all the time! Any of your experiences would be helpful!

Jeanette

April 14, 2011

Many drs are quicker to add DMARD's today than they were even 10 years ago when

we started this journey, and I think it is a good thing. If you read the post

from a few days ago about the man who is not being treated properly for

anklosing spondylitis then you can see for yourself the possible dangers of not

treating any type of arthritis seriously from the start.

You are new to the journey but not too new to start something like MTX. It can

provide relief for your daughter and get her out doing things a 13 year old

should be doing. Advocate for your daughter and do not leave that appointment

until you are comfortable with what the dr is saying. You are educating yourself

and that is a very important part of treatment.

Keep us updated! Hugs, Michele ( 23, spondy)

From: [mailto: ] On Behalf Of

danmanley47@...

Sent: Wednesday, April 13, 2011 4:30 PM