Words for Breckenridge from Enlander

[Guest guest]

I have entered your group because of Breckenridge, on Jim's

suggestion. Thank you Jim.

In the last week, I have read most of this very active board, I will

respond to some of the things where I may be helpful..

I referred to Gregg Cunningham who is a fantastic expert on Disability

in CFS. Separately both Gregg and I saw AND his mother on the Thursday

before he died. Gregg is a paraplegic from an accident and saw in his

office otherwise we would have seen him together. was upbeat, and left

New York to return to Syracuse in a positive mood.

Gregg thought we could arouse the disability people for , if anyone

could Gregg do it . He has a fantastic batting average.

Of course we were in shock when we got the news from and . We

will miss him and name the New York part of the CFS RNA study in his honor.

I read a few other things in this very active " board " which I would like to

comment on, some of which and I spoke about on our last meeting.

Kutapressin acts on the immune system, we are not sure how. The words

activant, stimulant and modulator have all been used. None are exactly correct.

We

believe that there is an up-regulation in the immune system. As one writer

stated stimulation of the immune system may be inappropriate. Kutapressin and

its analogues Hepapressin and Nexavir seem to " correct " the immune response.

How ? we are not sure, there have been suggestions relating to Th1:Th2

change, cytokine production , endorphin production, T cell mobility etc. We

really

are not sure of the mechanism. In fact was exploring various avenues in

trying to find some answers.

Mental illness and CFS. As some of you may know I have in the past locked

horns with Simon Wessely. I dispute that CFS / ME is a mental disease. I accept

the possibility that, as in any chronic disease; sarcoidosis, leukemia,

cancer etc, patients can think back to the more productive days of their lives.

They may feel depressed. This is SECONDARY to the CFS, it is not the cause.

Mercury in Teeth Of course I am against mercury amalgam fillings. Should

we remove existing fillings. If they are not loose probably not. About nine

years ago we were asked the same question, drilling out fillings was in vogue.

We were nor certain, but some patients were insistent. I am their doctor so

I want to advise them rather than steer them wrongly. So we did a short

study on nine patients. We checked on serum Mercury levels before their dentist

drilled out the filling, it was normal in all cases. Drilling mercury filling

even with the best dentist causes the drill bit to heat and so heat the

filling. They have a water spray counter the heat, but still the mercury

fulminates and forms a vapor . The patient breaths in the vapor which enters

the

blood stream. The patient saw us within a week following the dentist and we

drew

a second sample of blood. The average serum mercury was four times normal.

Now this was an anecdotal finding in a relatively non controlled observation

on nine patients but was sufficient to quiet our thinking on drilling filling

in patients with normal serum mercury. On initial examination we test for

heavy metals.

Best regards

Enlander MD

_www.enlander.com_ (http://www.enlander.com)

message dated 12/24/2005 2:54:15 P.M. Pacific Standard Time,

helenjora@... writes:

Thank you for your kind words. We miss greatly.

Helen

>

> Breckenridge

>

> My name is Cunningham and I was the person who was going

to

> represent Mr. Breckenridge with his Social Security disability

> claim. I wish to send my deepest condolences to all his family and

> friends. Although I met one time, I found him to be a most

> intelligent and impressive young man. Although he had Chronic

> Fatigue Syndrome he seemed to be most optimistic and determine to

> overcome his illness and to help others with theirs. He expressed

> to me the strong desire in going back to school and about joining a

> new scientific study conducted by Dr. Enlander in New York

> City. I believed his goals were attainable.

> His death came sudden and shocking to me and to all

> of us, I know we all feel most hurt because of it. I hope that

this

> Web board continues in sharing information and helping each other,

I

> know that's what would have definitely been proud of, it's

> what he would have wanted.

>

> Sincerely,

> C. Cunningham

's last letter

=================

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.

>

> JLB