Re: Digest Number 673

[Guest guest]

Hi all I am new at the site, Here is my families CFIDS/M.E/Immune Deficiency

profile:

I haven't had an immune system for 16 years and I was sickly as a child.

After my first

child was born I started having repeated infections like sinus, bronchitis,

strep, severe

headaches, neck and shoulder pain, flu, fevers. Two years later my twins were

born and it has been a blur of just trying to survive. Sick, sick, sick, a

divorce, (9 years ago), sick, sick, job after job. I would be employed for 3

months to 6 months and quit, because I was to sick and to weak to return. I

am so frustrated because I have been so sick for years and no Dr. check into

an immune deficiency. Last January after a sinus and chest infection, I

became very ill will encephalitis/meningitis. I started having seizures. It

differently did something to my body and my brain. It has affected my

muscles, movements, strength, blurred vision, lung problems, and I have no

immune system. I now have neurological damage. I have read on CFIDS/ME and

a lot about immune deficiency disorders. My 17 year old and my 14 year old

twins, all boys are also home on medical withdrawals. They have all been ill

since October with all the symptoms of CFIDS/ME. The were diagnosed in

October for mono. They all have stiff neck, severe headaches, fevers, sore

backs, no memory, change in cognitive ability and they are very fatigued.

They all have low white blood counts and low iggs. Ricky, my oldest has been

very sick since he was little, always on an antibiotic, asthma, reactive

airway disease, and developed heart problems 2 years ago. Ricky and I were

also hospitalized in 1990, for 5 days because of bacterial infections we

couldn't fight off. When there is no immune system the infection attacks the

organs of the body. That is when I believe Ricky's heart problems started.

I am now watching my children very closely so this illness doesn't go into

encephalitis. I believe Ricky and I had an immune deficiency and now we all

have CFIDS/ME. My symptoms are worse because I have had the full blown

effect of the encephalitis. I feel my children are carrying the unknown

infection that causes this to go into M.E. We now have an Infectious Disease

Dr., Immunologist, Internal Medicine Dr. and the boy wonderful Pediatrician.

We are having a lot of blood draws and I am gone to have an MRI done. My

questions for now are: My Internal Dr. is going to order an MRI on me. I

have read that many of you have had the SPECT done. Can you tell me which

one is better? My Doc said the MRI would show everything. Also my sons are

having a lot of trouble sleeping, can you recommend a safe medicine to help

them sleep, they are also experiencing nightmares. The nightmares have only

happened a couple of times since October. But they are Bad nightmares.

Dreams about big spiders. My son's have never had nightmares. Any other

advise would also be greatly appreciated!

In His Love and Mine, (sick and worn out Mom)

[Guest guest]

Welcome!

As a starting point, care to list off what supplements or medicines that you are

taking?

Have you had any testing of chronic infections (Lyme, mycoplasma, rickettsia)?

Have you had any coagulation testing (ISAC - especially their genetic test for

inherited inability to dissolve fibrin [if memory serves me correctly])?

Which antibiotics have you guys been on?

The family cluster suggests either genetic or contagious causes (or an

environmental cause that is surpressing everyone immune systems)...

You will get a lot of suggestions from this group, because there are a lot of

difference experiences, models and theories that are respected as being valid

for some people - and we have grown to tolerate, even appreciate the differences

of approach (and occastion cross-fertilization of ideas and treatments). If you

want published medical articles for your MD on a specific approach, just ask and

you will usually be given the citations in short order ...

Pick and choose what suits you and your family - if there is a 'problem', this

group comes up with interesting solutions often.. so just speak up and someone

may figure out a route around it...

Ken Lassesen

2 @ 2 ft PWC, 2 @ 4ft PWC

2 ft PWC: http://www.folkarts.com/idef/

4 ft PWC: http://corgi.folkarts.com/

Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too)

Re: Digest Number 673

From: Omegashawn04@...

Hi all I am new at the site, Here is my families CFIDS/M.E/Immune Deficiency

profile:

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This list is intended for patients to share personal experiences with each

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discussed here, please consult your doctor.

[Guest guest]

Dear ,

Thank you for your effort to share your story. When I read it my heart

broke for you. I've had an MRI of the brain which showed nothing. The

SPECT measures blood flow and has been used to detect a distinguishable

pattern of hypoperfusion that is diagnosed as ME.

However, I would do some research online since I'm not right up to the

minute updated on brain imaging for CFIDS. I personally want to have

another SPECT to compare to the one I had ten years ago. I hear the scan

has been tremendously improved and reveals more specifics and receives

more respect from physicians.

Anyone else up on brain imaging or have the energy to research it? I

used to not remember information but knew where to look it up. Now I

can't recall where to look it up, so almost every time I need a word or

piece of info I start at square one.

You're smart to move quickly for your kids as I know there is much

greater success at recovery in the earliest stages. I'm sorry about your

symptoms, too, and identify with you. But my gosh, you have sick kids

too.

You've come to a wonderful resource for information with many helpful

people, so I'm glad for that. Sounds like you've already taken a lot of

smart steps and benefited your kids to date, too.

Sheri

[Guest guest]

Re: Digest Number 673

> From: Omegashawn04@...

>

> Hi all I am new at the site, Here is my families CFIDS/M.E/Immune

Deficiency

> profile:

>My 17 year old and my 14 year old

> twins, all boys are also home on medical withdrawals. They have all been

ill

> since October with all the symptoms of CFIDS/ME.

Hi, this is a family affair for us also, both my 17yo and 10yo are dealing

with different levels of this. Then of course I am also.

> We now have an Infectious Disease

> Dr., Immunologist, Internal Medicine Dr. and the boy wonderful

Pediatrician.

> We are having a lot of blood draws and I am gone to have an MRI done. My

> questions for now are: My Internal Dr. is going to order an MRI on me. I

> have read that many of you have had the SPECT done. Can you tell me which

> one is better? My Doc said the MRI would show everything. Also my sons

are

> having a lot of trouble sleeping, can you recommend a safe medicine to

help

> them sleep, they are also experiencing nightmares. The nightmares have

only

> happened a couple of times since October. But they are Bad nightmares.

> Dreams about big spiders. My son's have never had nightmares. Any other

> advise would also be greatly appreciated!

>

> In His Love and Mine, (sick and worn out Mom)

My younger son is the only one who has had any brain imaging. He had the

NeuroSPECT scan at Harbor/UCLA. They are linked up with Dr. Mena, in

Chile.(He originally started this work at UCLA). My understanding is that

he has the largest database in the world with controls).

My understanding is that at least initially(in the children) they have

normal MRI's even though the Spect is abnormal.

My younger son used to have terrible nightmares. He would be petrified but

not fully awake. I would just try to soothe him until he calmed down enough

to lay down and fall asleep. He never seemed to remember the next morning.

He also used to be in constant movement all night long. He's on quite a

regimen of meds now. He still on occaision has problems falling asleep.

It's usually because he starts feeling too hot. But once he falls asleep,

he usually sleeps soundly all night.(except for once in awhile, a mid night

restroom run).

My older son was having really bad insomnia. He is now on an anti-viral,

anti-fungal, anti-histimine and low dose SSRI and is falling asleep much

easier. We just started treating him in July. He was also having alot of

cognitive problems. Until he started getting sick in Jr High, he was an A-

B student. Then his grades started to drop, he was getting C's, D's and

F's. Math seemed to be the hardest for him, he would end up in summer

school math, every year. He now has a first quarter A in math, he said he

has the highest grade in the class. YEAA!! So his processing appears to be

working much better.

I wish there was one treatment that worked for everyone, but there isn't.

My boys have seen many different doctors. The treatment we are doing for

them now appears to be the best fit for them. It has involved testing

different meds. Even with my boys, they respond to meds differently, even

meds within the same class.

Cheryl

[Guest guest]

My MRI showed brain lesions " similar to MS " .

sheri.clark@... wrote:

> From: sheri.clark@...

>

> Dear ,

> Thank you for your effort to share your story. When I read it my heart

> broke for you. I've had an MRI of the brain which showed nothing. The

> SPECT measures blood flow and has been used to detect a distinguishable

> pattern of hypoperfusion that is diagnosed as ME.

>

> However, I would do some research online since I'm not right up to the

> minute updated on brain imaging for CFIDS. I personally want to have

> another SPECT to compare to the one I had ten years ago. I hear the scan

> has been tremendously improved and reveals more specifics and receives

> more respect from physicians.

>

> Anyone else up on brain imaging or have the energy to research it? I

> used to not remember information but knew where to look it up. Now I

> can't recall where to look it up, so almost every time I need a word or

> piece of info I start at square one.

>

> You're smart to move quickly for your kids as I know there is much

> greater success at recovery in the earliest stages. I'm sorry about your

> symptoms, too, and identify with you. But my gosh, you have sick kids

> too.

>

> You've come to a wonderful resource for information with many helpful

> people, so I'm glad for that. Sounds like you've already taken a lot of

> smart steps and benefited your kids to date, too.

>

> Sheri

>

> ---------------------------

[Guest guest]

General Posting list (please feel free to repost . . . )

As we come very close to launching the effort fully for your children

(thanks to the hard work and dedication of some very dedicated parents and

researchers out there), the " question " always comes up, what are my

" statistics, " what is my " success " rate in the practice. Unfortunately, as

I have always explained, as a clinician, doing things the way I have, it is

very difficult to present " statistics " based on many, many variables

involved. Anything within the practice is regarded scientifically as

antidotal. However, in preparing for some recent presentations I came

across a sheet from a visit back east 3 years ago, which actually creates a

very valid document / statement for all of you.

At that visit I saw 48 patients. 24 are still with me (as has been remarked

it would be interesting to look at the 24 who are no longer with me). Of

the 24 still seeing me, 7 are " not good enough " Most of these are children

who are doing better than ever predicted or imagined by the parents, but for

a combination of reasons (older age, poor education and rehab assistance,

lack of immune modulators), they are not what I can call " normalized. " Of

the remaining 17, 10 are FULLY normalized (functioning in regular classes,

academically often at the top of their class, healthy, bright, " regular "

children - usually still on some type of " maintenance " therapy); the other 7

are almost there (will be shortly).

Needless to say these are unheard of statistics or results in the world of

" Autism. " Preparing for the effort to launch, the first 2 - 3 weeks in

January, within the office I have another list of 40 - 50 " normalizing "

(already there or will be) patients seen or spoken too in follow up in that

short time period. NONE of these patients have been treated with

megavitamins, multi supplements, IVGG, steroids, Secretin, Chelation, cod

liver oil, or ANY of the many recommendations you all continue to receive.

As I have spoken and written, this has become pediatrics for me, these are

children, this is a MEDICAL problem. In the end, ONLY science and medical

logic are what are going to prevail / work. As I say repeatedly to the

parents, IF there children were born " defective, " IF they were ever what the

world still tries to think is " Autism " this could never occur; as a

physician I could not " fix " a " presumed " defective brain. As is the focus

of current thinking, you might be able to improve function, but you could

never expect a truly normal child, and that is what you are all still told

today.

Years ago I was warned " don't say the wrong things to parents, don't give

false hope. Thankfully, it is now the other way around. NOT to be told to

believe in your children, NOT to be told they have the potential to be

regular children IS thankfully WRONG. Over the years the " myth " of Autism

(some undefined, unknown, congenital, developmental defect) continues to

doom your children and you as parents to accept a " fate, " with NO science to

support what that really is and WHY they are supposedly doomed to the fate

called " Autism. " Thankfully, as the years progress, EVERY piece of solid

science support the idea of an autoimmune, often chronic viral process in

your children, and THAT does make sense medically, it can be defined

objectively, and it has become reality. It is time the system focused on

the real crisis facing all of you, this country, and the world. NOT

something your children thankfully do not have.

In a short time the effort will be officially launching a chance to

bring NEW agents, open the door expediently to potentially very safe,

potentially very effective therapies for your children. While I have become

use to ongoing success with what I am doing (it remains difficult). It is

up too all of you however whether this is going to have a chance to receive

the focus, NATIONAL attention it should, whether we are going to have a real

chance to change that " Autistic " system, the image of how your children are

perceived, how they are treated and educated, in essence create literally a

180 degree shift in medical thinking, educational thinking, therapy

approaches, or will that system manage to maintain control for another

decade or so. AS noted, thankfully, ongoing research and scientific facts

support everything I have been saying for many years. When I now present

science, clinical logic, and appropriate MEDICAL information to physicians,

therapists, and parents, IT makes sense, it is logical, and it is

scientifically valid.

Sadly, as reflected by the recent " discussions " re my failure to be invited

to the upcoming rally in DC, you are all living in a VERY " controlled " world

that wants you (I might add obviously the media and congress,

representatives) to hear what it wants you to, not open to " other " opinions,

ideas (even based on hard science), etc. That world continues to pursue

funding for " Autism, " says it wants to encourage " advocacy " for Autism (than

vague, UNKNOWN dysfunction) which thankfully, happily as noted, a

" disorder " (as currently understood) your children DO NOT have, CAN NOT

have. As many of you have appropriately begun to ask, WHY is that system

afraid for you to hear " other " opinions, to have a chance to be presented

with medical facts that do NOT support their false conceptions or ideas.

Most important, why continue to pursue ADVOCACY for a disorder your children

do not have, a disorder that dooms the world to believing your children can

not really be fixed. What might happen IF the media, congress really

understand we could help truly change your children, their futures, and our

societies future now? Isn't it time the truth became known? Isn't it time

you all demanded science, logic, NOT ideas built around a " mystic " of some

unknown disorder, undefined dysfunction, your children seem to have. Or at

least, expect that ALL information should be open to you, the media, and

congress. Fortunately, science, the understanding of " neuro-immune " has

progressed such that you're children are going to have a chance in spite of

the system, NOT because of it. As a pediatrician, this remains a Very SAD

statement, a terrible tragedy UNLESS we all change this NOW. Thankfully

it's looking like we will finally be able to do that!! None of you should

allow this chance to be missed (it won't come again for many years IF the

system continue in its " usual " manner).

So, this is IT. Either this effort succeeds, or it will be many more years

before the system will do what we can make happen now. We must not let

these old ideas, old " mystics, " old concepts, old prejudices old " politics "

stop you're children from having a chance to truly become children, to have

a chance for a truly productive life. The chance too change this is about

to be right in front of you. It's up to all of you to help break down the

false walls, false information, false knowledge surrounding your children.

(I might add, that as noted on one of the recent Tuesday night Chats, the

chance to make this happen, the evolution of the necessary science and

technology, the chance to really change things now, is NOT based on penny

spent on " Autism " research in the last 6 - 7 years - think about that!!)

With hope for a very exiting 2001

Goldberg, MD

(Note: With apologies for my lack of time (primary day-to-day focus is

always patient care), please approach any posting on this list with the same

type of skepticism and review. Certainly, this list will continue to

provide you with an open forum and place to look at any " logical " idea as

evolves. BUT as reflected frequently, physicians, therapist, informed

parents will take a logical piece of the approach and evolving science,

and still make what may be very unlike " scientific " presumptions, etc. One

of the first lessons in medical school, is how to decipher, look at

" studies " ?? validity, etc. As noted by many recent patient visits, when

patients are in contact with relatives with " scientific " backgrounds,

previous research experience, the " credibility " of the multiple pieces of

pseudo-science and logic you are all presented with rapidly falls apart!

[Guest guest]

> Sadly, as reflected by the recent " discussions " re my failure to be

invited

> to the upcoming rally in DC, you are all living in a

VERY " controlled " world

> that wants you (I might add obviously the media and congress,

> representatives) to hear what it wants you to, not open to " other "

opinions,

> ideas (even based on hard science), etc

Dear Dr. Goldberg,

May I assure you that you have at your disposal the 20,000 readers of

the FEAT Daily Newsletter for which to report both your findings and

your opinions to the autism community -- as long as I am its editor.

I will never forget your impassioned stance for the truth at the

April 6 hearing of last year. I should hope I never become immune to

good hard science.

-Lenny Schafer

Izak's dad

[Guest guest]

In a message dated 2/10/02 2:20:37 PM Pacific Standard Time,

writes:

<< Hi ,

I have never heard of this, can you enlighten me please?

>>

Here is a link . I don't know if they actually confirmed this, but

this is what they thought it could be.

<A HREF= " http://www.physicianschat.org/tearsheets/fifth.htm " >FIFTH'S

DISEASE(Erythema Infectiosum) - PHYSICIANS' CHAT</A>

[Guest guest]

--- wrote:

>

[Guest guest]

All of my son's SLP were all good.They all were and are knowledgeable

regarding apraxia and all have change their course of action to help with

what works with him.All communicate with me and let me know what is going on

and send assignments home to work with him at home.Plus his vocabulary is

improving everyday and that is why I say that they are good.Hope this

helps.Gretchen in Missouri

[Guest guest]

Shani,

I am sure they will do the body weight correctly

because what happened to my friend was a rare

incident. By the way, I did not ask the surgeon about

that. I only made sure beforehand to know how many

surgeries he has done, and the complication rate.

I will be thinking of you when you go in surgery. We

are all here if you need anything.

Take care, IslandBreeze