help for my son

September 15, 2004

<< Any suggestions would be greatly appreciated. >>

Betsy,

I don't have a Lyme Disease diagnosis, but I've often wondered if Chronic

Lyme may be my problem. I was the first person in the state of CT to receive

social security disability for CFS (Chronic Fatigue Syndrome). However, when I

was

awarded disability in 1987, it was called Epstein Barr Virus Syndrome.

I have seen some improvement over the years and am no longer totally bed

ridden.

I remain totally disabled, but now have some quality of life.

Below are things which I feel have helped me over the years:

1. I have been on the antibiotic " Minocycline " 100 mg for the past 4 1/2

years, (twice daily at first, but now once or twice daily). The brand name

Minocin

seems to help the most (but it is expensive), so I've found a generic (gray

and yellow capsule), which works almost as well. Note - another minocycline

generic did not have much effect (i.e., turquoise & clear capsules).

2. I take the antifungal drug Diflucan once a week. I originally took this

daily, but it seemed to loose it's effectiveness after about 5 months.

3. I avoid sugars and eat a low carb diet.

4. I take Celebrex for my arthritic pains (200mg/once or twice daily)..

5. I receive allergy shots (three times weekly, (for the past 18 years).

I am allergic to over 60 varieties of molds as well as other things.

BTW, my traditional allergist suspects I have a systemic mold/fungal

infection.

6. Early on, I received some benefit from The Atkins Center in NY City.

There I received IV pushes of Ozone, followed later with IV drips of

doxychlor (basically a food grade chlorox), along with vitamin C drips. Note - I

don't

believe these therapies were legal in CT, but they seemed to help me for a

little over a week at a time. I did these for about two and a half years. I

discontinued this after Diflucan became available in the states (but initially I

had to obtain it from Europe through the AIDS organizations).

I am in no way trying to diagnose your son.

I am simply responding to your plea for your son (see below).

Dewey

__________________________________________________________________

<< Subj: [ ] help for my son

Date: 9/15/04 10:52:22 PM Pacific Daylight Time

From: caridib@... (betsycaridi)

Reply-to:

Hello group-

I have just joined and am hoping to find help for my son. He is 16

and has been diagnosed with central nervous system lyme (5 months

ago). He went undiagnosed for 18 months. His first treatment was IV

rocephin for 2 1/2 months. No improvement in symptoms--severe daily

headache, fatigue, loss of short term memory, unable to fall asleep

and if he does, unable to stay asleep. He then started oral

antibiotics; doxy, then bioxin coupled with plaquinil for the

autoimmune syndrome, then ketek with plaquinil. Still no improvement

in headaches, but a little better sleep. He just took himself off all

his medication because he is doubled over with abdominal pain,

diarrhea, nausea and the doc said ther is nothing we can do about it.

He takes acidopholus by the handful. We live in CT. Any suggestions?

Have we missed any treatments? The brain spect showed soft tissue

involvement throughout his brain, which apparantly won't get better

until the autoimmune gets better. This is so overwhelming. Any

suggestions would be greatly appreciated.

Betsy >>

September 16, 2004

Dewey,

Thanks so much for your reply. Any suggestions are so appreciated. At this

point we are willing to try almost anything!

Betsy

September 16, 2004

Hi -

Yes, Dr Katz is our dr. Your stomach is able to tolerate the ketek? My son is

a mess on it and now refuses to take it. I am glad it's working for you! Dr

Katz is great, but I think he's getting frustrated with us because my son can't

seem to tolerate any of the meds he puts him on. He said that if we can hold

on for a couple of months on it, that the autoimmune will improve. I hate to

have to call him all the time with complaints, but it's so hard to watch my son

in pain and spending half his day in the bathroom!

Here's to your health.....

Betsy

September 16, 2004

,

Is malarone & Ketek antibiotics or homopathic?

Thanks for info

September 16, 2004

betsy,

I've had lyme since I was 16 and i'll tell you

something I thre out many pills many times from

frustrantion side effects being told by drs that I was

just plain crazy and from the lack of just not being

able to be a 16 yr old I am now 28. I am on iv clafrin

and I am now herxing which is a possible sign it may

be killing some bugs.

does he have a diagnoses? is he seeing a lyme

specilist? a good one? I'd like to talk to youu more.

e-mail me at tonkamarie1@...

__________________________________________________

September 16, 2004

Hello Betsy

Ask your Doctor about Lauricidin I work with alot of

children with autism that use it with great success

along with many Lyme patients. It is a component

found in mother's milk that is partacilly responisable

for the milk's antibacterial antiviral and antifungal

properties.

For more information go to www.lauricidin.com

Kabara

--- eric schulman <eric_s11050@...> wrote:

> I am on malarone and it seems to be alot better the

> plaquenil. it stopped the pain in the muscles and

> the

> fatique.

> eric

> dr katz is my doctor as well. I am on 400mg of ketek

> and sometimes I get a stomache ache.

> eric

> --- caridib@... wrote:

>

> > Hi -

> > Yes, Dr Katz is our dr. Your stomach is able to

> > tolerate the ketek? My son is

> > a mess on it and now refuses to take it. I am glad

> > it's working for you! Dr

> > Katz is great, but I think he's getting frustrated

> > with us because my son can't

> > seem to tolerate any of the meds he puts him on.

> He

> > said that if we can hold

> > on for a couple of months on it, that the

> autoimmune

> > will improve. I hate to

> > have to call him all the time with complaints, but

> > it's so hard to watch my son

> > in pain and spending half his day in the bathroom!

>

> > Here's to your health.....

> > Betsy

> >

> > [Non-text portions of this message have been

> > removed]

> >

>

> _______________________________

> Do you ?

> Declare Yourself - Register online to vote today!

> http://vote.

>

__________________________________________________

September 16, 2004

Hi I also live in ct, I have found that it is very difficult to get a dr in this

state to do anything. I decided to go with a natropath, I got tired with md's

and all the reactions from the meds. The natropath actually listened to me, I

also get accupuncture and it helps, what part of ct r u in. U can email me if

you would like any info, eveandal@....,,eve

September 18, 2004

Betsy and all-

I have not been on this forum for a while but would like to share some info.

First of all, I am a mom of 6 lyme children, whom were all on 'special ed',

(called the '504' plan in NJ) due to lyme disease. They missed a great deal of

school, were at times unable to walk, function. I, myself, ended up paralyzed

from the neck down, had every symptom of lyme except testicular pain and

thought it was the end of the world. At the same time... my husband was

suffering

with various serious symptoms, the worst being tachycardia... his heart would

pound 240 beats/min. out of his chest and he would pass out cold. We were a

mess.... to say the least.

We all tested neg. according to CDC guidelines but had a wonderful LLMD and

we did abx; myself, 5+ yrs. I have been on these forums since 1996 and started

asking/sharing/looking for support info.

I left allopathich medicine after doing TONS of abx/Mepron/Malarone/Flagyl,

etc and switched to all-natural. THIS IS WHEN my health vastly improved.

I am now a CNHP, Iridologist and am finishing my degree as a Naturopathic Dr.

I am 99% better (you never 'cure' lyme).

I had ALL infections, lyme, babesia, ehrlichia, bartonella, CMV, Epstein

Barr, mycoplasma, nanobacteria.....etc.

I am explaining this because I don't want any hate mail that I am trying to

solicit products or any such nonsense. These forums are for ALL here to share

info, support, protocols, even products (If they work) and Robynn has advised

me to sign my name with my credentials. I know there are alot of new people

here.

I know lyme disease and how the body works and I personally feel (and we are

all entitled to our opinions and should show respect for all other opinions),

that God has put all that man needs on this Earth. It is us that has screwed

things up... me included. I don't eat a perfect diet.... don't have perfect

thoughts... etc.

Therefore, we need to supplement.

We know that 'lymies' are B-complex deficient, zinc, magnesium, mostly

minerals.

There is much info about all of this and if you search archives, you can get

the documentation it has taken me 8yrs to accumulate.

Lyme can be managed naturally.

Taking antibiotics is like a hamster on a treadmill. As long as you take

them, you will show improvement. But what happens when you stop??? You go back

to

Square 1, back to the beginning... it might not be immediate, but it happens.

So why not do something differently?? Change the internal environment so they

can't proliferate???

I am a success story, have maintained great health, working full-time, 6

kids, feeling great. I am not here to brag or boast but to inspire others to

seek

the truth.

You CAN attain much better health, education is the key.

Betsy- I have many, many children as clients and it is amazing what can be

accomplished naturally. I will write you privately.

Blessings,

sue massie, CNHP

732 933-4011

May 1, 2006

From: " C Creel " catherine.creel@...

Date: Sun Apr 30, 2006 9:55am(PDT)

Subject: Re: Help for my son?

Could someone please pass this on to ? From what I

understand, this came from another list. Thank you.

Dear ,

You said:

<<I have a very unusual situation. My son is 35 and I have supported him

most of his adult life as he has had mental health problems (panic

disorder, agoraphobia, specific phobia, etc. Over 2 years ago in the

fall he noticed he was having severe problems with his bowels his lymph

nodes are the size of grapefruits and he has other symptoms such as

bouts of coughing (mets to lungs?) He barely leaves his bed, hasn't left

the house in almost 2 years. His vision has deteriorated, he is in

severe pain all the time and is drinking A LOT for the pain. Can anyone

give me something positive I can pass on to him, he doesn't trust my

opinion on anything. >>

** Do you have an actual diagnosis or are you

speculating here?

The drugs given for these conditions you

mentioned (which, btw, can be dealt with using high dose nutrients) can

cause symptoms like the obnes you describe here. Add to that his lack of

movement and it all makes sense.

The problem may be that your son gave up

on life years ago. I don't know whether he will respond to anything but

there is help for him if he wants it.

I run a group where I tend to get people like your son.

These are all people adversely affected by psychotropic drugs. They join

my group to get off the drugs and recover their lives and health.

I'd be glad to let you see what we do.

While I have no use for conventional mental health

services, your son's situation is extrme and warrants a call to the

community mental health center. These centers have plans in place for

" crisis intervention " . While I believe their drugs are at the root of

many illnesses, something needs to knock your son off the fence he's

sitting on. It really doesn't make any difference right now which way he

falls off. Either way has the potential to save his life. He's stuck and

needs a push. My way requires motivation. Their way requires nothing

except what he is already doing.

In the meantime, where does your son get the alcohol

if he doesn't leave the house?

Regards,

(Withdrawal_and_Recovery/)

" Every science touches art at some points while every art has its

scientific side; the worst man of science is he who is never an artist,

and the worst artist is he who is never a man of science. "

[Armand Trousseau]

May 2, 2006

Please check out www.emofree.com. This helps often

when nothing else will. He can do it himself or you

can get a practitioner to help. M. Arthur

--- robert-blau@... wrote:

> From: " C Creel " catherine.creel@...

> Date: Sun Apr 30, 2006 9:55am(PDT)

> Subject: Re: Help for my son?

>

> Could someone please pass this on to ?

> From what I

> understand, this came from another list. Thank you.

>

> Dear ,

>

> You said:

>

> <<I have a very unusual situation. My son is 35 and

> I have supported him

> most of his adult life as he has had mental health

> problems (panic

> disorder, agoraphobia, specific phobia, etc. Over 2

> years ago in the

> fall he noticed he was having severe problems with

> his bowels his lymph

> nodes are the size of grapefruits and he has other

> symptoms such as

> bouts of coughing (mets to lungs?) He barely leaves

> his bed, hasn't left

> the house in almost 2 years. His vision has

> deteriorated, he is in

> severe pain all the time and is drinking A LOT for

> the pain. Can anyone

> give me something positive I can pass on to him, he

> doesn't trust my

> opinion on anything. >>

>

> ** Do you have an actual diagnosis or are

> you

> speculating here?

>

> The drugs given for these conditions you

> mentioned (which, btw, can be dealt with using high

> dose nutrients) can

> cause symptoms like the obnes you describe here. Add

> to that his lack of

> movement and it all makes sense.

>

> The problem may be that your son gave up

> on life years ago. I don't know whether he will

> respond to anything but

> there is help for him if he wants it.

>

> I run a group where I tend to get people like

> your son.

> These are all people adversely affected by

> psychotropic drugs. They join

> my group to get off the drugs and recover

> their lives and health.

> I'd be glad to let you see what we do.

>

> While I have no use for conventional mental

> health

> services, your son's situation is extrme and

> warrants a call to the

> community mental health center. These centers have

> plans in place for

> " crisis intervention " . While I believe their drugs

> are at the root of

> many illnesses, something needs to knock your son

> off the fence he's

> sitting on. It really doesn't make any difference

> right now which way he

> falls off. Either way has the potential to save his

> life. He's stuck and

> needs a push. My way requires motivation. Their way

> requires nothing

> except what he is already doing.

>

> In the meantime, where does your son get the

> alcohol

> if he doesn't leave the house?

>

> Regards,

>

(Withdrawal_and_Recovery/)

>

> " Every science touches art at some points while

> every art has its

> scientific side; the worst man of science is he who

> is never an artist,

> and the worst artist is he who is never a man of

> science. "

> [Armand Trousseau]

>

__________________________________________________

May 2, 2006

Dr. Mercola is very big on EFT (the Emotonal Freedom Technique, covered

at emofree.com). Something I'D like to look into. (We can all use some

help.)

From: " Margit Arthur " margit34@...

Please check out www.emofree.com. This helps often when nothing else

will. He can do it himself or you can get a practitioner to help. M.

Arthur ---

robert-blau@... wrote: