Info needed

August 17, 2000

Group, I have been diagnosed with large cell lymphoma and have heard of a lab in Long Beach, Callifornia called Rational Therapeutics run by a Dr. Nagourney that does live cell analysis to determine what drugs, etc are effective at killing off the cancer cells. Has any one out there heard of them, and, if so, is it good or bad? Thanks for your help. Carol/Piney

dm oct 94

ap jun 98 minocycline 100 mg twice a day

tylenol 3 when needed

vitamins, supplements, herbs too numerous to mention

August 17, 2000

Carol

I don't know if this was the actual lab featured or not, but I saw a

recent 20/20 or Dateline where they profiled this type of cancer

treatment and the success of it was incredible. They profiled one

particular patient who had been deemed terminal after all treatments for

her breast cancer failed. She had her cancer tested by a lab using this

treatment, it was determined that her breast cancer was a type that

responded better to lung cancer-type drugs, which she got and

recovered. I think targetting specific cancers with the best drugs

equipped to kill them makes far more sense than blinding shoving drug

cocktails into patients hoping something works. Sounds to me like

you've found a progressive treatment centre and I'll certainly be

sending my best thoughts to you.

Hugs,

a Peden

> Bob Zarn wrote:

>

> Group, I have been diagnosed with large cell lymphoma and have heard

> of a lab in Long Beach, Callifornia called Rational Therapeutics run

> by a Dr. Nagourney that does live cell analysis to determine what

> drugs, etc are effective at killing off the cancer cells. Has any one

> out there heard of them, and, if so, is it good or bad? Thanks for

> your help. Carol/Piney

August 17, 2000

Carol,

I live near that area, but I am not familiar with that doctor. Several

months ago, there was speculation that I might have lymphoma, so I did some

checking.

There is a doctor in Huntington Beach named Dr. See at the Jeneusse Institute

that claims to have a high success rate with lymphomas. He is also

affiliated with Dr. Garth Nicholson who does much of the mycoplasma testing.

If no one else knows anything, let me know and I can try and check around and

see what some of the doctors around here say.

Carol

February 21, 2001

Hi ,

Having your skin turn darker from the mino won't hurt you but going off

it and having the RA come back will. Now, whether or not the mino was

actually the cause of your liver problems, that's another matter but you

should be aware that a number of meds can cause liver problems,

including a number of nsaids as well as most traditional arthritis

meds. So, my advice would be to confirm whether or not the mino

actually was the cause of your liver problems and if not, get back on it

and stay on it. I know Dr. Brown found that going on and off mino can

cause a rebound effect and make it tougher to get good results if you

relapse, then go back on the treatment. Dr. Brown never said this

treatment was a cure, the goal is to get your disease into remission,

then keep it there by staying on a maintenance dose for life. To my way

of thinking, going on and off the treatment just makes the bugs more

antibiotic resistant and therefore, tougher to fight.

Hugs

a

> caversa@... wrote:

>

> I haven't been on line in several months and it is good to be back and

> reading all e mails from website.

>

> I was on Minocin for 11 months and had to go off of it due to liver

> problems and skin turning a dark color. I haven't been on any

> medicines for RA since August of 00, but lately it is beginning to

> flare up again at night.

>

> I wake up during the night with stabbing pains in my knees, ankles and

> hands are swollen. It usually lasts until morning (about 5 hours).

> The RA doesn't seem to bother me that much during the day.

>

> My question is: Could be on Minocin so long have put the disease into

> a mini remission? When is does come back, will it be with a vegence?

> Should I go back on Minocin for another period of time? I am RA

> seronegative and since that fact, my doctor doesn't believe that my RA

> will develop into the crippling stage.

>

> Thanks,

>

February 22, 2001

Dear ,

Your doctor does not know what he is talking about (sorry). Dr. Christian

Barnard (the famous surgeon) was RA sero-negative and he ended up in a

wheelchair.

I stopped taking mino few years ago and I felt good for a month. One

morning I got up and felt like a 10ton truck hit me.

If you turned yellow you need to take a break from mino. Clean your

liver with vit c to bowell tolerance and milk thisle, then when you get

better you have to get back on it or something else that affects your liver

less than mino does.

Good luck

caversa@... wrote:

I

haven't been on line in several months and it is good to be back and reading

all e mails from website. I

was on Minocin for 11 months and had to go off of it due to liver problems

and skin turning a dark color. I haven't been on any medicines for

RA since August of 00, but lately it is beginning to flare up again at

night. I wake up during

the night with stabbing pains in my knees, ankles and hands are swollen.

It usually lasts until morning (about 5 hours). The RA doesn't seem

to bother me that much during the day. My

question is: Could be on Minocin so long have put the disease into

a mini remission? When is does come back, will it be with a vegence?

Should I go back on Minocin for another period of time? I am RA seronegative

and since that fact, my doctor doesn't believe that my RA will develop

into the crippling stage. Thanks,

To unsubscribe, email: rheumatic-unsubscribeegroups

March 29, 2001

Sue,

My 10 year old daugher came down with Stills 2 1/2 years ago. After struggling for a year on prednisone and Indocin, we went against our doctor by deciding to try the AP. Your nephew is old enough to be put on minocycline. went on the AP (in her case biaxin) in November of 1999. In six months, we had her weaned from prednisone. She still had some inflammation in the knees and ankles but since her shoulders, elbows, wrists and hips had been involved this small amount of stiffness, pain and swelling did not seem major. More importantly, by June, her hemoglobin which causes the anemia, was firmly back in the normal range. If he is still having fevers, the AP will not immediately bring that under control. We had the fevers under control with the prednisone and the Indocin (the occaional tylenol when that didnot work.

If his doctor is willing to try it I believe there are docs in the UK giving this treatment. With children the improvement can be very fast. However, the swelling and sed rate did get slightly worse before it got better. When it started to get better, after about 4 months, it got better quickly until the last bit in the ankles and knees which took awhile longer. By this Christmas, she was able to kneel, sit crosslegged and get up from the floor.

All things she had been completely unable to do. She also has had only 3 sick days from school since September.

If your sister want to e-mail me. She can do so at hescock@....

Hescock

March 29, 2001

,

Wow what a wonderful and powerful testimony!!! How overjoyed you must be when seeing your daughter being able to do the things that she might not have ever been able to do without the AP!! I know how much my daughters mean to me and I am so thrilled that yours is doing so well!! This really touched me and I hope that it will encourage others and give them hope too that they can be feeling better than they are now!!

Thank you so much for sharing this with the group!!

Peace,

Sherry

Sue, My 10 year old daugher came down with Stills 2 1/2 years ago. After struggling for a year on prednisone and Indocin, we went against our doctor by deciding to try the AP. Your nephew is old enough to be put on minocycline. went on the AP (in her case biaxin) in November of 1999. In six months, we had her weaned from prednisone. She still had some inflammation in the knees and ankles but since her shoulders, elbows, wrists and hips had been involved this small amount of stiffness, pain and swelling did not seem major. More importantly, by June, her hemoglobin which causes the anemia, was firmly back in the normal range. If he is still having fevers, the AP will not immediately bring that under control. We had the fevers under control with the prednisone and the Indocin (the occaional tylenol when that didnot work. If his doctor is willing to try it I believe there are docs in the UK giving this treatment. With children the improvement can be very fast. However, the swelling and sed rate did get slightly worse before it got better. When it started to get better, after about 4 months, it got better quickly until the last bit in the ankles and knees which took awhile longer. By this Christmas, she was able to kneel, sit crosslegged and get up from the floor. All things she had been completely unable to do. She also has had only 3 sick days from school since September. If your sister want to e-mail me. She can do so at hescock@.... Hescock To unsubscribe, email: rheumatic-unsubscribeegroups

May 7, 2004

Hi June,

Sorry to hear about your news, I will keep you in my prayers, Tawny

> Hi there a & , I just received some rather unsettling news

and wondered if you knew anything about it. I had a series of x-rays

done last week prior to going ahead with my left knee surgery and

right ankle re-fusion. It turns out that I have a large gap between C-

1 and c-2 so any surgery has to be put on hold until I see a

neurologist. I have never had any neck or back pain so I am thankful

my rheumy chose to have the x-rays done since operating with a

general anesthetic could cause you to end up a quadriplegic but I

don't know what the connection is. Any information would be

appreciated. In the meantime, I refuse to worry or panic about

something I know very little about.

>

> Hugs

> June

>

May 7, 2004

Thanks so much, Tawny.

Hugs

June

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