Re: GenSys

[Guest guest]

Hi Val,

You wanted to know whether the doctor at Gensys recommended the treatment. Not

sure if I mentioned this story. After having testing at Gensys and getting the

sensitivity test done they determined I had a rheumatoid spirocete but not the

lyme spirocete. All the symptoms are the same though. My spirocete is not yet

documented.

My doctor didn't really understand the treatment or what I had so we called down

to Gensys and the doctor down there recommended Doxycycline and Ciprofloxacin.

However, I was the one that insisted they give me drugs for both the brain/cns

and for entering into the cells. I am sure my doctor would not have had a clue.

However, Doxy does not show up on my sensitivity test so I have to see him this

week to find out if it is on the test but under another name.

The sensitivity test listed alot of different types of drugs and said

" resistant "

or " sensitive " . I don't totally understand it to be honest. I figure if it

says

resistant it is no good for me. Most of the drugs I was resistant to.

> My doctor gave me 3 months treatment but that was not necessarily what the

> doctor in the States might have wanted. I didn't ask about this but I am very

> concerned I am not getting a long enough treatment. I also did not bring up

IV

> and my doctor didn't suggest it. ly, I don't think he has a clue what he

> is doing. I am trying to find someone else who treats it more frequently but

> barring that I have to try and convince my doctor to keep me on it longer. I

> have a list of questions for him. Such a pain....

Holly

[Guest guest]

Val,

Re Ultraviolet Treatment

What they do is they take some blood out of your arm. There is contravorsy as

to

how much. I had two vials but I know others have had 3. No one has ever died

from this and they have been doing it since 1930 when polio was a problem. Then

they run the blood through an ultraviolet light and then re-inject the blood

into

the body. Apparently this causes the blood to become very oxyenated and the

blood that has been put through the light kills everything in it from bacteria,

fungas to viruses. When it goes back into the system it causes a chain reaction

and kills off the same stuff in the body. It does not hurt to have it done.

However, I would suggest you have vitamin C IV's with it or the next day because

the vitamin C in high doses detoxes the system very quickly and gets rid of the

toxins faster. If you do these treatments drink tons of water to ward off the

headache. I had very little side effects. Just fatigue, headache (when I

didn't

take water). Took 4 treatments before I started to feel stronger.

I had 7 treatments although it was suggested that I have 10 or more. I was back

to work within a month and a half. I was okay for a year and half until I went

through a stressful move and started to relapse. Remember though, that they had

no idea I had a bacteria. This was all they could offer me except for vitamins,

herbs and homeopathics which helped an incredible lot too. I must say though I

did not have enough treatment and never did feel 100%. The reason for that is

that I didn't have enough treatment. I believe if I had more, I would have held

it off longer. I doubt if UV would kill them all but it will hold them off so

that you can live if other treatments are not working. Apparently an oxyenated

environment is not friendly to spirocetes and they will die in it and as well it

is supposed to pull them out of their hiding places better than antibiotics. I

have no idea if that is true but I hope to be able to afford a few more

treatments during my antibiotic treatment to help it along. For all I know the

two may not work together. Its a crapshoot.

They do research up in Alaska. If you search for Ultraviolet Irradiation

Treatment on the net you will find it very easily. Some great articles about it

are out there.

I do believe though that UV doesn't work well for the brain or maybe because I

didn't have enough, I didn't have much improvement. Since I have been taking

the

antibiotics my brain is starting to work again. Amazing. However, I'm not too

positive antibiotics will take them all away either from what I read about

others. I think I will be fighting it periodically for the rest of my life.

Let me know if I missed anything.

Holly

[Guest guest]

In a message dated 7/11/99 11:58:44 PM, netcat@... writes:

<< Amazing. However, I'm not too

positive antibiotics will take them all away either from what I read about

others. I think I will be fighting it periodically for the rest of my life.

Let me know if I missed anything.

Holly >>

Holly, thank you for the info on UV therapy. Where did you have it done? You

said that you also had some homeopathic meds and herbs. Which ones did you

feel helped you out the most. I am thinking of seeing a homeopath or

herbalist possibly Zang in Manahattan who is claiming to treat Lyme with much

success. I have to wait a while to start any new meds because my liver

enzymes are up and I am not taking anything right now. Anyway I hope you are

feeling better. Are you combining herbal remedies with abx right now? -Val

[Guest guest]

<<<Hi Cheryl...

Depending on what you want done , testing wise...you can have just the

sensitivity test done if you don't care about what spiroketes you have or

the lyme culture or spirokete culture...they have to culture the bacteria in

order to do the sensitivity test, so if short on cash( 300.00 ) its the one

to do...they have many tests for a range of purposes. I asm going to do the

spirokete culture and sensitivity test...about 406.00 total.

Take care...Byron >>>

Thank you very much Byron! I have personally decided not to have this test

done, however. After looking into it further, I think my money is better spent

elsewhere.

Hope it helps you!

)

Cheryl (LI, NY)

[Guest guest]

<<Hi Cheryl,

I saw my doctor yesterday, we discussed this very thing, he said that

the life-cycle, or reproduction cycle of the bacteria is 28 days, and one

need not be on abx to experience a herx or exacerbation of symptoms at that

time.>>

Hey Marta! I know all the doctors say that this is what they see in practice,

but still can't find out WHY. Yes, I was one of those annoying little kids who

ran around all the time asking WHY. LOL As Carol had suggested, my herbalist

also said that these nasty spirochete cycle with the moon. However, I thought

that bacteria, by definition, do not cycle. I am confused, this isn't making

sense talking about a bacteria cycling. HELP! LOL What do you think Carol?

)

Insane Cheryl (NY)

[Guest guest]

In a message dated 9/10/99 12:21:59 AM Eastern Daylight Time,

F.Byron@... writes:

<< I talked with one of the owners at Gensys labs and they assured me that tey

were not closed down...some new personel in pathology were hired but they

staed the rumors were not true of them closing down. For what its worth...

>>

thanks for the update...actually was wondering where you were B...glad to see

you are still here...with your back problems..B

[Guest guest]

In a message dated 9/10/99 9:10:10 AM Eastern Daylight Time, BratDet@...

writes:

<< Byron...glad to see

you are still here...with your back problems..B

>>

i reread this...hope it came out the way it was intended...but to make

sure...I am glad that despite what you are dealing with....that you are still

with us on the list....that you can still make it here... B

[Guest guest]

I would be careful about sending any blood or money to Gensys. I have no

idea why they would say they weren't closed down. Didn't someone on this

list call CLIA and ask if they were shut down and they said yes? I thought I

read it somewhere.

Kathleen

[Guest guest]

--- Fyikat@... wrote:

> From: Fyikat@...

>

> I would be careful about sending any blood or money

> to Gensys. I have no

> idea why they would say they weren't closed down.

> Didn't someone on this

> list call CLIA and ask if they were shut down and

> they said yes? I thought I

> read it somewhere.

>

> Kathleen

> Kathleen and all-

I saw my doc on Wed and he also said that they HAVE been shut down. He

also said he will no longer use that lab and is really afraid that if

this is more than a " bookkeeping " issue it will have a real negative

effect on our cause because they are the ones that have been doing

cultures and sensitivities. If in the investigation the CLIA determines

that all the positive cultures are not legit it is going to be a major

blow to the Lyme community as well as all the docs that have used this

lab. He is not real happy about being in this position. Esp with all

the other things going on right now with Dr. B.

L(MI)

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

[Guest guest]

Hey B,

We all knew what you meant, well, maybe not the newbies, but they just

probably thought it was a Lyme thing...LOL!

Hugs,

Marta NJ

>From: BratDet@...

>

>In a message dated 9/10/99 9:10:10 AM Eastern Daylight Time,

BratDet@...

>writes:

>

><< Byron...glad to see

> you are still here...with your back problems..B

> >>

>i reread this...hope it came out the way it was intended...but to make

>sure...I am glad that despite what you are dealing with....that you are

still

>with us on the list....that you can still make it here... B

>

[Guest guest]

We were tested by GenSys almost a year ago. I spoke with my doc a couple

days ago and he confirmed that yep, it IS closed. Even though they are

" shut down " , they still manage to send us a bill every month..lol. These

are posts from the lymenet message board:

http://www2.lymenet.org/domino/flash.nsf/10b4d9489989572f8525664f0082bab0/9a

fa6eb6ee26da9f852567e5000f7962?OpenDocument

Submitted by Category

From: Virginia

Date: 06-Sep-1999 at 10:49 PM EDT

Host: cx112990-a.chspk1.va.home.com /

Document Title: Info on GenSys shut down

I just saw this post on Remarq.com, and since some had been asking about the

topic earlier, I'm reposting it here. Fair warning...

**************************

From: calliecoe

Topic: Re: GenSys lab

Message: 12 of 14 (In response to Debtoo2773)

Sent: Mon, 06 Sep 1999 06:08:34 GMT

As much as I hated to hear this myself, GenSys is shut down. I did my own

research since I hate rumors and finally found out who CLIA was and their

number and fax. CLIA is the bureau who licenses you so you can run a lab.

The number is 312-886-3595 or fax# 312-353-3419.Mrs. Scimeca is the lady's

name if you want to do your own verification. Other complaints are being

taken by Mr. Goldberg 312-814-4564 and fax# is 312- 814-5392. What upsets me

the most is that they [GenSys] are not telling doctors and patients that

they are closed . Just because they answer the phone does not mean that they

are open. They will take your blood and money, but neglect to inform

everyone that if they are not reopened after they do what they have to do,

no one will get their money or results! Sounds like fraud to me and unfair

to all of us lymies. I was considering sending my blood there when I found

this

out. Encourage your doc to double check before losing your bankroll. I did

hear the culture media was good though. Too bad they could not get it

together for whatever reasons.

Sent via Deja.com http://www.deja.com/ Share what you know. Learn what you

don't.

***************************

Document Title: Re: Info on GenSys shut down

Thank you for that post. This is not a rumor. I have checked this myself and

called several officals. They are in hot water over many situations, even

though they are putting on a great act on the phone. I also talked with

several doctors that were using them and they also checked with officials.

It was verified to them as well. This has nothing to do with Dr. Burrscano's

attack. This is not related as stated to me. I suggest that if they are not

lying, ask them to put it in writing for the public to see. If it is the

truth, no one will be hurting anyone and they can clear their name. If they

refuse, maybe they are covering something up! I asked the CLIA offical if

they put it in writing will they be in trouble and yes they will face some

serious consequences! I found out something very interesting when I heard

the owners Ph.d. was in question. I made a lots of calls and found out that

the Unverisity that he attended never had a campus and never did! I checked

the library as well on books on accredi

ation. They state it was a bedroom deal. If anyone is interested I can post

the source. They offer no classes and and did not have an administration

building. How can you get a Ph.D ? They required that you write a thesis.

They do not require a master's depree for some customers! I asked for a copy

of the schools background by catalog if one was available and finally I got

a copy which was not an easy feat. I could not believe my eyes that he was

telling the truth! I feel sorry for those patients and doctors that do not

take time to check this out for themselves instead of guessing. Are they so

desparate for something on paper to protect themselves that they neglecting

to protect their patients? If you want a copy just post your address and I

will send it to you. I was hoping this was a real thing because my son has

lyme and I am tired of all the politics. I can only verify what I have in

writing, but it is unsettling info.

Re: Flagyl/Experiences

>

>In a message dated 9/29/99 6:41:11 PM Central Daylight Time,

>netcat@... writes:

>

><< Have you had testing at Gensys? If you were in remission from

> antibiotics and now it has returned, maybe they are not using the right

> antibiotic for you. Gensys wld know. Just a thought that you may have

> already considered. >>

>

>Gensys is closed.

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

>

>>Send to -Offtopiconelist messages unrelated to lyme, please.

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>To unsubscribe, send email to -unsubscribeonelist

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[Guest guest]

In a message dated 9/30/99 8:12:15 AM, rhbailey@... writes:

<<Does anyone have any idea what's going to happen to the cultures the lab

has? Or how we can find out?

Sue B.

upstate New York

>>

Sue, Has your daughter been treated yet for Lyme? Has she been on any abx or

she is currently undergoing any treatments? My prayers are with you and your

daughter-Val

[Guest guest]

Sue,

As far as I know Gensys has been taking money and blood from patients for a

while knowing they were shut down. Fairly scammy pracitices as far as I can

tell. Sorry about your daughter but you won't get any results from them and

if you did you couldn't trust them.

Kathleen

[Guest guest]

In a message dated 10/3/99 7:01:38 PM Central Daylight Time, Fyikat@...

writes:

<< As far as I know Gensys has been taking money and blood from patients for

a

while knowing they were shut down. Fairly scammy pracitices as far as I can

tell. Sorry about your daughter but you won't get any results from them and

if you did you couldn't trust them. >>

How do you know you couldn't trust the results?

[Guest guest]

Hi,

I'm new here as of yesterday and have not made my introduction yet, but

Gensys below caught my eye. Are you speaking of Gensys Hospital in Genesee

County in MIchigan? This is where I live and would be interested in what is

going on at this hospital as this is where I go when I need to be

hospitalized!

Thanks,

CHristie Tabacchi

tab@...

>Sue,

>

>As far as I know Gensys has been taking money and blood from patients for a

>while knowing they were shut down. Fairly scammy pracitices as far as I can

>tell. Sorry about your daughter but you won't get any results from them and

>if you did you couldn't trust them.

>

>Kathleen

[Guest guest]

Hi All,

I don't think anyone has confirmed why GenSys has been shut down. I

too would like to know. From what I understand so far from my doctor

the results that were sent back on the sensitivities have helped some

people. I don't think anyone said the cultures were bad or

contaminated did they?

Barb-MI

:

: << As far as I know Gensys has been taking money and blood from

patients for

: a

: while knowing they were shut down. Fairly scammy pracitices as far

as I can

: tell. Sorry about your daughter but you won't get any results from

them and

: if you did you couldn't trust them. >>

:

: How do you know you couldn't trust the results?

[Guest guest]

In a message dated 10/3/99 11:35:35 PM Central Daylight Time,

blfitzma@... writes:

<< I don't think anyone has confirmed why GenSys has been shut down. I

too would like to know. From what I understand so far from my doctor

the results that were sent back on the sensitivities have helped some

people. I don't think anyone said the cultures were bad or

contaminated did they? >>

My doctor believes that the initial process of determining whether you had LD

or another bacterial infection is accurate. He is not as certain as to

whether the antibiotics tests to determine which one was the best to kill the

infection was as accurate.

[Guest guest]

Sorry if I offended anyone about Gensys. It is just that from what I know

their " ethics " were a bit questionable. I really can't explain exactly what

I know but it's just that when something seems funny then it probably is and

I don't think any of their work would be trustworthy. No. I do not know if

their culture or sensitivties are accurate or valid for sure it's just that I

wouldn't trust them.

Kathleen

[Guest guest]

Christie-

GenSys lab is in Illinois. There is no connection

between them and the hospital in Genesee Co.

L(MI)

--- " C.Tab. " <tab@...> wrote:

>

> Hi,

>

> I'm new here as of yesterday and have not made my

> introduction yet, but

> Gensys below caught my eye. Are you speaking of

> Gensys Hospital in Genesee

> County in MIchigan? This is where I live and would

> be interested in what is

> going on at this hospital as this is where I go when

> I need to be

> hospitalized!

>

> Thanks,

>

> CHristie Tabacchi

> tab@...

>

>

>

>

>

> >Sue,

> >

> >As far as I know Gensys has been taking money and

> blood from patients for a

> >while knowing they were shut down. Fairly scammy

> pracitices as far as I can

> >tell. Sorry about your daughter but you won't get

> any results from them and

> >if you did you couldn't trust them.

> >

> >Kathleen

>

>

>

------------------------------------------------------------------------

> Send to -Offtopiconelist messages

> unrelated to lyme, please.

> /archive/lyme-aid

> /archives.cgi/Lyme-Documents

> To unsubscribe, send email to

> -unsubscribeonelist

> You may substitute " subscribe " , or " digest " or

> " normal " for

> the word " unsubscribe " ( " normal " is the opposite of

> " digest " ). Leave blank both the message and subject

> header.

>

<HR>

=====

[Guest guest]

welcome christie!

i hope you are finding this list a good resource for support and

information.

this is a very friendly group!

if you want, you could let us know what link you have to lyme disease!

don't hestitate to ask questions, ask for support or information.

i am afraid i can not answer this question, but someone else may.

i believe the gensys mentioned here is just the laboratory, i do not think

they are part of a hospital. but i could be wrong.

again welcome,

kay

[Guest guest]

I agree. Get your tests redone by Boston Biomedical Clnical Labs in Ct.

Lovey

On Mon, 4 Oct 1999 17:45:43 EDT Fyikat@... writes:

> From: Fyikat@...

>

> Sorry if I offended anyone about Gensys. It is just that from what

> I know

> their " ethics " were a bit questionable. I really can't explain

> exactly what

> I know but it's just that when something seems funny then it

> probably is and

> I don't think any of their work would be trustworthy. No. I do not

> know if

> their culture or sensitivties are accurate or valid for sure it's

> just that I

> wouldn't trust them.

>

> Kathleen

>

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

[Guest guest]

The scoop I received was that one of the researcher did not have the

correct credentials and this then nullified the results of any test he

did and which in turn infected Gensys with the repercussions. Once you

lose your reputation for credibility it is hard to recoop. Lovey

On Mon, 4 Oct 1999 00:33:31 -0400 " Barbara Fitzmaurice "

<blfitzma@...> writes:

> From: " Barbara Fitzmaurice " <blfitzma@...>

>

> Hi All,

>

> I don't think anyone has confirmed why GenSys has been shut down. I

> too would like to know. From what I understand so far from my doctor

> the results that were sent back on the sensitivities have helped

> some

> people. I don't think anyone said the cultures were bad or

> contaminated did they?

>

> Barb-MI

>

>

>

>

> :

> : << As far as I know Gensys has been taking money and blood from

> patients for

> : a

> : while knowing they were shut down. Fairly scammy pracitices as

> far

> as I can

> : tell. Sorry about your daughter but you won't get any results

> from

> them and

> : if you did you couldn't trust them. >>

> :

> : How do you know you couldn't trust the results?

>

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

[Guest guest]

In a message dated 10/03/1999 9:35:43 PM Pacific Daylight Time,

blfitzma@... writes:

<<

Hi All,

I don't think anyone has confirmed why GenSys has been shut down. I

too would like to know. From what I understand so far from my doctor

the results that were sent back on the sensitivities have helped some

people. I don't think anyone said the cultures were bad or

contaminated did they? Barb in MI

Barb,

As someone who taught Physician's Laboratory science. I know a lot about what

it takes to please state officials. Log in records and Procedural manual must

be set up and kept in a timely fashion. Reports must be sent out also in a

timely fashion. Temperature charts must be kept on the refrigerators and

incubators. If they think things have been done in a way as not to insure the

safety of employees or staff or the clients they will shut down a lab in a

moment after inspecting them. I don't know that these things did exist at

GenSys. The one thing I can testify to is that their turn around time was not

in a timely fashion. It took 8 months or more to get sensitivities back from

them. I believe like Barb. that the information they furnished physicians

with was beneficial in helping the Dr. to treat Tick born diseases.

Unfortunately, if they were lax in any of the afore mentioned areas the State

can shut you down. Carol in MI

[Guest guest]

In a message dated 10/04/1999 11:07:32 AM Pacific Daylight Time,

Golfdawg@... writes:

<< My doctor believes that the initial process of determining whether you had

LD

or another bacterial infection is accurate. He is not as certain as to

whether the antibiotics tests to determine which one was the best to kill

the

infection was as accurate.

>>

That is true. What happens in a test tube and what happens in your body are

two different things. The spirochetes do not have a place to hide in Vetro

(outside the body) but in Vivo (inside the body) we all know they find

millions of places to hide from antibiotics and trick our immune system from

attacking them. Carol

[Guest guest]

I believe I have read somewhere that the reason GenSys was shut down was

because they were using researchers/doctors who were not certified or met

the criteria to perform these tests. Therefore, all testing done at

GenSys is considered " suspect " . Hope this helps. Lovey

On Mon, 4 Oct 1999 14:07:03 EDT Golfdawg@... writes:

> From: Golfdawg@...

>

> In a message dated 10/3/99 11:35:35 PM Central Daylight Time,

> blfitzma@... writes:

>

> << I don't think anyone has confirmed why GenSys has been shut down.

> I

> too would like to know. From what I understand so far from my doctor

> the results that were sent back on the sensitivities have helped

> some

> people. I don't think anyone said the cultures were bad or

> contaminated did they? >>

>

> My doctor believes that the initial process of determining whether

> you had LD

> or another bacterial infection is accurate. He is not as certain as

> to

> whether the antibiotics tests to determine which one was the best to

> kill the

> infection was as accurate.

>

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