Re: Just got back from Dr Enlander NYC visit / gene study and LOTS of Complements!

December 16, 2005

Hi ,

That was a wonderful report you gave us from your visit to see Dr.

Enlander. This confirms my own good impression of him. I'm so glad

that he was interested in what you were telling him and was open to

trying all those tests on you. Maybe you will get better!

I can hardly wait to hear the results of your Kerr testing.

Sue ,

Upstate New York

December 17, 2005

Hi ,

That was a wonderful report you gave us from your visit to see Dr.

Enlander. This confirms my own good impression of him. I'm so glad

that he was interested in what you were telling him and was open to

trying all those tests on you. Maybe you will get better!

I can hardly wait to hear the results of your Kerr testing.

Sue ,

Upstate New York

December 17, 2005

when you get that full write up done I'd love to post it on the CFS

Phoenix website. I've long wanted to get patient descriptions of their visits

with CFS doctors. What do you think?

jasonlbreckenridge <jasonlbreckenridge@...> wrote: 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

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 17, 2005

Cort, Do you have report(s) on ph Brewer of Kansas City? If not, what would

be helpful? Mel

December 19, 2005

Hi Mel, all I know about Dr. Brewer is his paper on HHV-6 and CFS done in

2000. I havent heard much else about him. If there is more I would like to know

- I'[m finishing up a paper on HHV-6.

Mel Baldwin <alphabear@...> wrote: Cort, Do you have report(s) on

ph Brewer of Kansas City? If not, what would be helpful? Mel

December 21, 2005

THis posted about an hour before his last post explaining his

situation and asking for help. Dated the night of Dec 15, 2005.

There are several drugs like B12, Keppra, Zithromax, Doxycyclin and

Nexavir that he said were prescribedby Erlander.

But, what would interest me, too, is what drugs and supplements had

he been taking the last month in addition to the Re-cuperation. And,

at what levels. Was he still on neurontin?

mjh

>

> 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 21, 2005

>

> THis posted about an hour before his last post explaining his

> situation and asking for help. Dated the night of Dec 15, 2005.

>

> There are several drugs like B12, Keppra, Zithromax, Doxycyclin and

> Nexavir that he said were prescribedby Erlander.

Bob: recently emailed be back-channeled and I have been too ill

to answer. Maybe as with myself, he had times where something would

happened and he just wanted out and for the suffering to be over. I

am fighting taking my life dozens of times a day. I moved back to my

mobile home so I would be close to where I grew up and plan to be

cremated.

I wrote more but then decided to erase it. My family will not believe

this but IF I did anything, I hope that everyone who knows me from

this list will know that I fought the good fight and I am proud of

how I worked and took care of my family for the first 22 years of

CFS. I hope that one day we will all stand together and know that

thought we had our differences, we all had this illness in common.

Bob

December 21, 2005

I have tears in my eyes having just read 's penultimate letter

Enlander

PS I will react to it later

de

In , " jasonlbreckenridge "

<jasonlbreckenridge@y...> wrote: