Re: Re: Just got back from Dr Enlander NYC visit / gene s...

December 20, 2005

REad the email I just sent from him. It answers your questions

December 20, 2005

Could he have taken too much B12.. or " " " temporary pain meds. " .?? What is

Keppra, that he was taking? Could he have been allergic to it? Could the Keppra

have interracted with too much B12 . Too much B12 can cause severe nervous

system damage. I hope his death was not an accident caused by medication

allergies or interactions. He was aso bright. What a shame.

Patient Information Sheet

Levetiracetam (marketed as Keppra)

Keppra®

Brand Name: Keppra

Active Ingredient: levetiracetam

Strength(s): 250mg, 500mg, & 750mg, 100mg/mL

Dosage Form(s): Tablets, Oral Solution

Company Name: UCB Pharma, Inc

Availability: Prescription only

*Dated Approved by FDA: November 30, 1999

*Approval by FDA does not mean that the drug is available for consumers at

this time.

What is Keppra used for? Keppra is a medicine to treat partial seizures in

adults and children 4 years of age and older with epilepsy. It is taken with

other seizure medicines to help control seizures. Special Warning(s) with

Keppra: Some people taking Keppra can get serious reactions including:

sleepiness or feeling tired

weakness

difficulty coordinating muscles normally, (e.g., abnormal walk)

aggression, anger, and irritability

agitation, anxiety, and other mood changes

decreased ability to cope with daily life events

feeling depressed or worsening depression

thoughts of suicide Talk to your doctor before stopping Keppra or any other

seizure medicine. Stopping a seizure medicine all at once can cause status

epilepticus, a serious problem. General Precautions with Keppra: Keppra may

cause

drowsiness. Do not drive a car or operate complex machinery until you know

how Keppra affects you. What should I tell my doctor or health care provider?

Tell your doctor or health care provider if you:

are pregnant or plan to become pregnant. Keppra may cause birth defects. If

you are taking Keppra while pregnant, tell your health care provider to

register you in the Antiepileptic Drug Pregnancy Registry by calling

888.233.2334.

are nursing or planning to nurse your baby. Keppra is passed through breast

milk to the baby.

have a history of kidney problems. Tell your doctor about any other medicines

you may be taking, including non-prescription medicines. What are some

possible side effects of Keppra? (This is NOT a complete list of side effects

reported with Keppra. Your health care provider can discuss with you a more

complete

list of side effects.) The most common side effects are:

drowsiness

weakness

dizziness

infection For more detailed information about Keppra, ask your health care

provider.

Patient Information Sheet

Levetiracetam (marketed as Keppra)

Keppra®

Brand Name: Keppra

Active Ingredient: levetiracetam

Strength(s): 250mg, 500mg, & 750mg, 100mg/mL

Dosage Form(s): Tablets, Oral Solution

Company Name: UCB Pharma, Inc

Availability: Prescription only

*Dated Approved by FDA: November 30, 1999

*Approval by FDA does not mean that the drug is available for consumers at

this time.

What is Keppra used for? Keppra is a medicine to treat partial seizures in

adults and children 4 years of age and older with epilepsy. It is taken with

other seizure medicines to help control seizures. Special Warning(s) with

Keppra: Some people taking Keppra can get serious reactions including:

sleepiness or feeling tired

weakness

difficulty coordinating muscles normally, (e.g., abnormal walk)

aggression, anger, and irritability

agitation, anxiety, and other mood changes

decreased ability to cope with daily life events

feeling depressed or worsening depression

thoughts of suicide Talk to your doctor before stopping Keppra or any other

seizure medicine. Stopping a seizure medicine all at once can cause status

epilepticus, a serious problem. General Precautions with Keppra: Keppra may

cause

drowsiness. Do not drive a car or operate complex machinery until you know

how Keppra affects you. What should I tell my doctor or health care provider?

Tell your doctor or health care provider if you:

are pregnant or plan to become pregnant. Keppra may cause birth defects. If

you are taking Keppra while pregnant, tell your health care provider to

register you in the Antiepileptic Drug Pregnancy Registry by calling

888.233.2334.

are nursing or planning to nurse your baby. Keppra is passed through breast

milk to the baby.

have a history of kidney problems. Tell your doctor about any other medicines

you may be taking, including non-prescription medicines. What are some

possible side effects of Keppra? (This is NOT a complete list of side effects

reported with Keppra. Your health care provider can discuss with you a more

complete

list of side effects.) The most common side effects are:

drowsiness

weakness

dizziness

infection For more detailed information about Keppra, ask your health care

provider.

Could he have been allegic to the kutapressin (Nexavir)?

Could he have taken too many antibiotics.. too many for his body?

Subj: Just got back from Dr Enlander NYC visit / gene

study and LOTS of Complements!

Date: 12/15/2005 10:30:09 PM Eastern Standard Time

From: jasonlbreckenridge@...

Reply-to:

Sent from the Internet (Details)

I will write up a full report later, but I must say Dr Enlander is

truly the best , most compassionate doctor I have ever met. I sat

with him for probably 2 hours or more in his nice office dicussing

much of what this list discusses, gluthathione, LDN/beta-endorphins,

the gene study vs gows work, B12, methylation cycle problems, hepa

vs kuta pressin, simon wessely (who he has now since written tony

blare gotten attention to CFS as legit in UK) and he also showed me

these rediculous people who have critized him for not 'releasing his

formula' which is NOT true. its fully available, all the exact

proporations, he has no financial interest or patent on it and is

focused on helping and curing patients but never claims he can 100%

cure them, he likes a low profile but conducts probably some of the

most intetesting and helpful clinical studies with his patients. He

has been asked by the new buyer of Nexavir to conduct a study with

it with his patients, and he also personally said that he would

conduct a study with me regarding low dose naltrexone and a possible

neurontin opiate interaction if we can get funding from the south

courlina oraganization for CFS, which he said may fund this. He said

I would need to write a paper and I would be one of the co

investigators and we could even test endorphin/LDN etc on patients

with their consent and based on his and my results and research.

I am very pleased. He prescribed exactly want i needed/wanted and

one thing I need help with is that he prescribed 100,000mcg B12

weekly and I have no idea where i can get a pharmacy to fill that

HUGH amount. He said GSH and other IVS dont work as well and he is

not in favor because it flushes out of the system in the urine just

like a saline IV to fast. He has been workin on it for years and

says the IM injections, although local, do penetrate systematically

better, over time. I forgot to ask him about the GSH suppossitories.

Also, I got 16 vials of blood taken for every test I can think of

and urine. Heavy metals, Amino acid profile, every virus thats i can

think of , every bacteria, every parasite, and a correct Lyme test

with the asscociated patthogens that come with it.

AND HE WANTED ME TO INFORM EVERYONE : YOU WILL GET ALL YOUR TEST

RESULTS INDLUCING THE RNA GENE STUDY RESULTS SENT TO YOU IN SOME

MONTHS. It may come directly from Dr Kerr, or Dr Enlander, he is not

sure how Kerr will do it.

It is RNA of the white blood cells, it will show exactly your genes

thats are up or downregulated and what knowlodge we might have on it

currently can be helpful and found,

He also said he is skeptical of Dr Gow's triple drug treatment which

he doesnt think exists, and if so, it will not work. He said the way

Gow used the equpiment to study the gene is not as good as what Kerr

and Enlander are working on. Enlander is not promising a cure, but

is very very optimistic, i have never seen him so excited.

He is also interested in the ciguatoxin epitope, and Dr Hokama's

work who he was considered a co investigator for.

He didnt know about Recupreat-ion yet, but i informed him that in

Spain it is remissing FM and some CFS and also the Salt/C protocol

is helping Lyme and others and he said it as did I that it seems the

sodium channels may be the key and that the sodium channel effect

that Dr Hokama is studying is defintely interesting , so is now

aware of Recup and the proporation of the simple minerals

He had a lot to say, he agrees with Cheney on a lot of things, he

diagress's with titelbualm on his approach and how his book makes

tons of money, but he talks to all the doctors, including Dr

Demierlier. He can do the RnaseL test still and Hokama had a fire or

something i think but he said the Ciguatoxin test is now free but i

was confused on that.

Anyways I have way more to report on my progress. He is weaning me

off neurontin using Keppra, no benzos, and prescribed some temp pain

meds and he also is getting me disability he said i am good hands

and he would appear in court with me and the paralegal he works

with, greg cunningham, who is also awesome!

He has a laptop right in his office on the internet, he does read

all his email, and he showed me some, it was so cool, and he reads

some groups and lists occasially, though I am not sure he does read

this one. I will convince him too. I mentioned Rich's GSH work and

he wasn't familar personally with him but he knew of the GSH poster

work at the AACFS conference.

He prexcribed Zithromax, Doxycycline and we will add Flagyl in a bit

later than rotate. He did NOT want to do Valcyte because of liver

monitoring, but once i get disability i will be getting Nexavir and

probably participate in his trial that the company that bought them

out wants to try with him. Otherwise, I will do his protocol, plus

the original Kutapressin 2ML daily (nexavir) as it is supposidly

more potent i guess. I am also going to ask for GSH suppossitories.

I thought he may have not been up to date but he said his patients

always inform him of the latest. He did seem interested in the Recup

because of the sodium channels being effecting and the ion

channelopathy, but we didnt dicuss it too long.

2 vials for the RNA, the other 14 were for every test in the book

that had LOL. They said some are too expensive and he couldnt

and my insurance couldnt) do the NK cytolytic activity which was

disappoting, but the amino acid, heavy metal, and breakdown of CD4/8

B, NK etc cell counts and all the viruses and bacteria was exciting,

as well as the standard mineral, CMP, CBC/wdiff, B12 status will be

cool to have, He said he couldnt do the intracellular GSH status

though.

Anyways any questions feel free to ask and I suggest anyone who

lives in NY try to get to him, he is the best. The first time i saw

him i didnt really enjoy it because we didnt have time, but he has

like 15 patients waiting but spent 2 hours with me this time now

that i am an 'integrated patient'. He is very compassinate and will

work with you. I really think he is the best 'overall' specialist in

CFS and FM.

JL

December 20, 2005

Bob,

We don't know each other , but please, continue fighting that feeling. I

had that feeling for many years as well. Been sick since 1989, and my life

was a nightmare for many years. It is still a struggle, but I have had this

illness under control for about 8 years or so. I also have my own business.

There

is light at the end of the tunnel. I believe that for each of us, by finding

the right MD's, the right treatments, we can get thru this and have a decent

life. At least you have a family that loves you. I am divorced 2x. the second

time recently to someone I never lived with in another state. As aresult of that

marriage I am no longer elligible for either of my two husband's social

security and am really screwed. But I will continue on. My son is going to get

married next year and someday have kids and I will be a young grandma! There are

things to look forward to. Have you gone to Dr Bihari in NYC? He has been a

lifesaver to many. The best is yet to come for us all.

December 20, 2005

Oh yes I did, But if it was suicide, I think they would have known that by

now. He did not sound suicidal did he? He sounded hopeful.

December 20, 2005

Not doubting it at all. In fact, my ex husband was determined to prove i was

not sick in 1992, & he is a med. professional that i put thru college and the

next 4 years of school. If I was too sick to work he said, I was too sick to

keep my own children. Imagine having to go thru that. I was completely

bedridden. Migraines 20 out of 30 days a month. FM pain unbearable. Elevated

liver

enzymes for years. CMV. I have had melanoma because I had no lymphocytes. I had

expressive ephasia, would get in the car to drive my son somewhere and forget

where i was going, even what my own phone number was. The physical pain was

unbearable, The lack of support from husband, and sister, worse. IL2 saved me

until I found Dr Bihari. I wanted to die so many times. I am so glad to still

be here. How has your illness progressed in ways mine hasn't? Mine was hell.

I'm sure I will die of cancer if my meds stop working and my lymphocytes

disappear. I'm sure your symptoms are horrible too, Just please, don't give up!!

That is my only point. Your health may turn around, like AIDS patients' have.

Have you tried Dr Bihari in NYC? PLEASE TRY!!

December 20, 2005

Hope we find out soon. It could just as easily been any one of us.

December 21, 2005

When I was in 's situation -very ill and living with my abusive

parents - my mood was utterly manic. As you say one minute infinite (and

most often unrealistic) hope and the next infinite despair. I would

literally be laughing and believing my life was wonderful one minute and

then considering suicide the next. It was bizarre and truly horrible

Like I ploughed my energies into research in the hope of finding a

treatment that would help me. I was absolutely zealous about it,

researching on the net often until I would suffer a relapse from exhaustion

and collapse. This zealousness clearly wasn't good for me physically but it

was one of the things that helped me cope mentally with the abuse as it both

gave me hope for the future and a means to escape the hell that was my

present situation.

Re: Just got back from Dr Enlander NYC visit /

gene s...

> When I originally read 's two last posts on the night of the 15th,

> I immediately thought of the philospher who wrote two slim

> volumes.... " The Knight of Infinite Hope " and " The Knight of Infinite

> Despair " ,

>

> mjh

>

>>

>> Oh yes I did, But if it was suicide, I think they would have known

> that by

>> now. He did not sound suicidal did he? He sounded hopeful.

>>

December 21, 2005

I'm not going to harp on this but there are alot of people in this group who

have been through and are going through enormously difficult times. By getting

their stories out in the world they can a) at least let that story make a

difference, i.e. let it help others who in the future deal with similar

circumstances by having them feel they are not as isolated as they might - that

others have been gone through the same thing and they can make it through. It

can also be healing to get ones story off ones chest.

I hope SOME people (SOMEBODY?) with take the time to tell their story (ies).

http://phoenix-cfs.org/The%20SITE/TellYourStoryBegin.htm

vickie77077 <vickie77077@...> wrote:

Hi, Bob

I became ill in 1975 too. I fought hard to keep working until 1990.

You are one of the people on the list I relate to most because I have

such terrible problems with mold, MCS, and allergy, just for starters.

I tried to kill myself once, and it changed me profoundly in ways I

can't even explain. I just know that I want to be a survivor and

whatever happens to my body, I feel like my soul is burning bright --

like Cort's phoenix. That's the example I want to leave behind for my

son and grandchildren. They may not understand now, but they will

someday.

I just want you to know you are not alone. I feel connected to you and

all you have been through, and I hope you can feel that connection.

Wishing you better days!

Vickie

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

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

December 21, 2005

The mood swings in this disease are just unbelievable and not really discussed

much. I encourage you to tell your story.

http://www.phoenix-cfs.org/The%20SITE/TellYourStoryBegin.htm

jl@... wrote: