New Diagnosis

[Guest guest]

Dakota,

If this doctor is not a rheumatologist, go see one immediately.

You definitely need a second opinion. Also no matter what, the guy is

a jerk, and IF (big if) he is as good at what he does as you think, he

would also know that there are many ways to combat this disease and

that while some folks may end up in a wheelchair, there are many more

that do not.

Yes, you might need to consider some lifestyle changes, but those are

all very premature at this point. You need to look at your options for

combating this disease and find out what is right for you. You don't

mention if you are male or female, intend to have children, and many

other factors, but there are a variety of choices and depending on you

and your course in life, will help to pick the drugs to battle this

disease.

You should also read archived posts here regarding treatment.

Methotrexate, Enbrel, Humira have all worked well for many folks.

A good rheumatologist will explain to you, the variety of choices and

positives/negative that could be involved.

But a wheelchair, is not likely to be one the first options.

Stay Well,

[Guest guest]

36 here with PS, Had it for about 5 years. Just started treatment this year

(besides taking Aleve). I have a 3 story town home and no problems. It sounds

like the doctor was trying to scare you so next time you come in you follow his

advice. I would find a doctor that treats you like an adult.

cheers

[Guest guest]

hello, ,

Sorry you're joining this club (Lymes) that no one wants to belong to, but glad

your trying Buhner's protocol.

Two weeks is a very short time, so don't feel discouraged if you see no results

yet. I took 3 months to get rid of my symptoms and I think that was quicker than

most.

As far as your question re taking the herbs with food or not, to my

recollection, Buhner does not specify. I took them after a meal, cuz I was

afraid of stomach upset if I took on an empty stomach. I did have a reaction to

resveratrol - it made me nauseous, so I didn't take it.

good luck to you,

let us know how you do.

ellen

[Guest guest]

catsclaw powder (in caps) should be taken apart from food, e.g. 15-30 minutes

before a meal. If you take it together with food there may be insufficient

stomach acid to extract the many active ingredients like alkaloids. I don't know

if this applies to the Samento version (probably not).

The other herbs (knotweed, smilax, andrographis) are best taken with food; this

can improve uptake and may prevent upset intestines.

>

> As far as your question re taking the herbs with food or not, to my

recollection, Buhner does not specify.

[Guest guest]

Samento has energetic frequencies in it and should be treated as homeopathic

herbal remedy. It is best to take it 20 minutes away from food and other

supplements.

Limin

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

From: " knot_weed " <tek0nik@...>

Sent: Thursday, April 16, 2009 08:02

< >

Subject: [ ] Re: New Diagnosis

> catsclaw powder (in caps) should be taken apart from food, e.g. 15-30

> minutes before a meal. If you take it together with food there may be

> insufficient stomach acid to extract the many active ingredients like

> alkaloids. I don't know if this applies to the Samento version (probably

> not).

>

> The other herbs (knotweed, smilax, andrographis) are best taken with food;

> this can improve uptake and may prevent upset intestines.

>

>>

>> As far as your question re taking the herbs with food or not, to my

>> recollection, Buhner does not specify.

>

>

>

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

>

> Buy Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And

> Its Coinfections by Buhner at one of these locations:

> http://tinyurl.com/3bgm5d

>

>

[Guest guest]

Dear Craig and Jeanne,So sorry to hear that you have to go through this. We are here to support you. My son Zachary was diagnosed with AML the day after his first birthday. He's 2 now and ended his treatment in January and is in remission. If you want to, you can read more about him at his caring bridge site: https://www.caringbridge.org/visit/zacharyleonwallace. If you go to the oldest posts, it describes the whole process. As you may already know, the treatment program for AML is quite a bit different than for ALL. All best wishes, sonAssociate Professor of English and Graduate Literature CoordinatorSan Francisco State University, Humanities 5371600 Holloway AvenueSan Francisco, CA 94132(415) 338-3107 On Sep 16, 2009, at 10:01 AM, slotshot@... wrote: Hello there, Just a quick note to introduce ourselves. Our son, , was diagnosed with pre-B ALL last week. We are still awaiting the results of the cytogenetics. We are fortunate to live in an area with an excellent childrens hospital (Cook Childrens in Fort Worth). Our Day 8 bone marrow aspiration is scheduled for this Thursday, 9/17. We should find out the results of the cytogenetics that day as well. He has Down Syndrome and his ALL was caught with a screening CBC. His RBC and WBC counts were normal, but his platelets were low (50K). According to the initial biopsy his marrow was 90% affected (whatever that means). His initial blast count was 3700, and his blast count at day 4 (or 5?) was 1100. His chemistry labs were good enough that they allowed us to go home until his Day 8 procedure. For induction we are currently signed up for a COG research study, AALL033. We will definitely need to examine the options available to us for Consolidation. We are nervous about choosing the most correct arm of the study. We look forward to conversing with you folks over the next several years! Craig and Jeanne

[Guest guest]

Thanks for the welcome (and everyone else). He has a Care Pages website at https://www.carepages.com/carepages/carterinfo

He is 6 years old. I think the single biggest question we have is how often the average child stays in the hospital during the first year...for both chemo and illness.

Thanks!

Craig

From: "sunshels@..." <sunshels@...> Sent: Wednesday, September 16, 2009 12:44:40 PMSubject: Re: [ ] New Diagnosis

I know "welcome" isn't the right word, but I am glad you found this list (and the other ALL list, I think I saw you post there too) My daughter Chloe, age 7 just finished her treatment for ALL in March 2009. I hope to be able to offer any help and information I can, as there were many others before me that did that for us! How old is , and do you guys have a caring bridge, or care pages site set up for him?

Chloe (dx Dec. 2006, OT March 2009 YAY!!!) [ ] New Diagnosis

Hello there,Just a quick note to introduce ourselves. Our son, , was diagnosed with pre-B ALL last week. We are still awaiting the results of the cytogenetics. We are fortunate to live in an area with an excellent childrens hospital (Cook Childrens in Fort Worth). Our Day 8 bone marrow aspiration is scheduled for this Thursday, 9/17. We should find out the results of the cytogenetics that day as well.He has Down Syndrome and his ALL was caught with a screening CBC. His RBC and WBC counts were normal, but his platelets were low (50K). According to the initial biopsy his marrow was 90% affected (whatever that means). His initial blast count was 3700, and his blast count at day 4 (or 5?) was 1100. His chemistry labs were good enough that they allowed us to go home until his Day 8 procedure. For induction we are currently signed up for a COG research study, AALL033. We will definitely need to examine the options available

to us for Consolidation. We are nervous about choosing the most correct arm of the study.We look forward to conversing with you folks over the next several years!Craig and Jeanne

[Guest guest]

of course, all kids are different. But we were in quite a bit that first year...not to scare you or anything. We had a few hospital stays for fever and neutropenia, and she had two really bad infections, the first one fungal (she had to have her first port removed and then replaced) the second was during Delayed Intensification and it was bacterial. Both times she was in between 10 and 14 days, and the second time we went home on an IV. The first year was pretty scary for us, but after that, she really did okay during the maintenance phase of her treatment. There was only one more visit to the ER for a fever toward the end of treatment.

Going to check out his page now, and hope that things are going okay for you guys. I was lucky enough to find these support groups early in her treatment too, because I can't tell you how much help everyone was for us!

[ ] New Diagnosis

Hello there,

Just a quick note to introduce ourselves. Our son, , was diagnosed with pre-B ALL last week. We are still awaiting the results of the cytogenetics. We are fortunate to live in an area with an excellent childrens hospital (Cook Childrens in Fort Worth). Our Day 8 bone marrow aspiration is scheduled for this Thursday, 9/17. We should find out the results of the cytogenetics that day as well.

He has Down Syndrome and his ALL was caught with a screening CBC. His RBC and WBC counts were normal, but his platelets were low (50K). According to the initial biopsy his marrow was 90% affected (whatever that means). His initial blast count was 3700, and his blast count at day 4 (or 5?) was 1100. His chemistry labs were good enough that they allowed us to go home until his Day 8 procedure.

For induction we are currently signed up for a COG research study, AALL033. We will definitely need to examine the options available to us for Consolidation. We are nervous about choosing the most correct arm of the study.

We look forward to conversing with you folks over the next several years!

Craig and Jeanne

[Guest guest]

Sorry to hear about 's diagnosis. My son was also diagnosed at the age of six and now is 8 years old and in his 16th month of treatment. He has had his ups and downs during treatment but has not had any serious complications. He was in the hospital for about 45 days during the first year, many of those days were during DI and due to pneumonia and low counts. I know all kids are different, but it seems that many kids with DS are more sensitive to some of the drugs. is doing very well now and at times I forget he is sick (but not during steroid week!).

I have found the list serves to be a great source of knowledge and comfort. It is wonderful you have found this group so early in 's treatment (and the ALL list serve). I hope he does well in the induction phase and responds early to treatment.

Jo (mom to ) Pre-B ALL Std High Risk (due to MRD at end of induction)

[ ] New Diagnosis

Hello there,Just a quick note to introduce ourselves. Our son, , was diagnosed with pre-B ALL last week. We are still awaiting the results of the cytogenetics. We are fortunate to live in an area with an excellent childrens hospital (Cook Childrens in Fort Worth). Our Day 8 bone marrow aspiration is scheduled for this Thursday, 9/17. We should find out the results of the cytogenetics that day as well.He has Down Syndrome and his ALL was caught with a screening CBC. His RBC and WBC counts were normal, but his platelets were low (50K). According to the initial biopsy his marrow was 90% affected (whatever that means). His initial blast count was 3700, and his blast count at day 4 (or 5?) was 1100. His chemistry labs were good enough that they allowed us to go home until his Day 8 procedure. For induction we are currently signed up for a COG research study, AALL033. We will definitely need to examine the options available to us for Consolidation. We are nervous about choosing the most correct arm of the study.We look forward to conversing with you folks over the next several years!Craig and Jeanne

[Guest guest]

I highly recommend the ALL Kids support group on the ACOR site. Its home page is www.all-kids.org so I'd recommend you check it out and consider joining. There are several DS/ALL kids' parents, and for this time, you'll find you have more in common with parents of kids with cancer than parents of kids with DS. It will get better, but for now, that would be my top recommendation. Also a site on caringbridge.org will let you blog about it so you don't have to answer the same questions again and again. Keene has a good book on Childhood Leukemia. Hang in there and take a day at a time!

Beth, mom to , age 9, diagnosed 10-29-03 with highrisk preB ALL, treated according to protocol 1961c, off treatment March 9, 2007!www.caringbridge.org/in/kylefacts

[ ] New Diagnosis

Hello there,Just a quick note to introduce ourselves. Our son, , was diagnosed with pre-B ALL last week. We are still awaiting the results of the cytogenetics. We are fortunate to live in an area with an excellent childrens hospital (Cook Childrens in Fort Worth). Our Day 8 bone marrow aspiration is scheduled for this Thursday, 9/17. We should find out the results of the cytogenetics that day as well.He has Down Syndrome and his ALL was caught with a screening CBC. His RBC and WBC counts were normal, but his platelets were low (50K). According to the initial biopsy his marrow was 90% affected (whatever that means). His initial blast count was 3700, and his blast count at day 4 (or 5?) was 1100. His chemistry labs were good enough that they allowed us to go home until his Day 8 procedure. For induction we are currently signed up for a COG research study, AALL033. We will definitely need to examine the options available to us for Consolidation. We are nervous about choosing the most correct arm of the study.We look forward to conversing with you folks over the next several years!Craig and Jeanne

[Guest guest]

Sorry to hear about your son's diagnosis. My son was diagnosed with ALL at 2 1/2 and finished treatment a little over a year ago. He's now 6 years old and doing great!

I hope we can be of some help to you.

Ann

www.caringbridge.org/visit/johnbremer

> > From: slotshot@...> Date: Wed, 16 Sep 2009 17:01:16 +0000> Subject: [ ] New Diagnosis> > Hello there,> > Just a quick note to introduce ourselves. Our son, , was diagnosed with pre-B ALL last week. We are still awaiting the results of the cytogenetics. We are fortunate to live in an area with an excellent childrens hospital (Cook Childrens in Fort Worth). Our Day 8 bone marrow aspiration is scheduled for this Thursday, 9/17. We should find out the results of the cytogenetics that day as well.> > He has Down Syndrome and his ALL was caught with a screening CBC. His RBC and WBC counts were normal, but his platelets were low (50K). According to the initial biopsy his marrow was 90% affected (whatever that means). His initial blast count was 3700, and his blast count at day 4 (or 5?) was 1100. His chemistry labs were good enough that they allowed us to go home until his Day 8 procedure. > > For induction we are currently signed up for a COG research study, AALL033. We will definitely need to examine the options available to us for Consolidation. We are nervous about choosing the most correct arm of the study.> > We look forward to conversing with you folks over the next several years!> > Craig and Jeanne > > > > ------------------------------------> >

[Guest guest]

Good luck it sounds like you have a lot of support. Read, read, read is all I

can suggest, it helped me.

Kel

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