CROHNS

[Guest guest]

, you've got mail. cindy_byl <cindy_byl@...> wrote: Hi all,I am looking for a physician to prescribe LDN for my 15 year old sonin the Midwest (We live in Iowa but I would happily travel to get theprescription). Anyone out there having any luck? My son was recentlydropped from the Humira pediatric study due to severe site reactions.He has had small bowel crohns for about 5 years and nothing we havetried keeps him in remission. We have remicaid in our back

pocket butfor many reasons I would prefer to try the LDN first. Our Mayo clinicDoc says he would not prescribe it but would continue to monitor myson if we find someone else to prescribe. Sounds like a cop out to me. Thanks

[Guest guest]

Hi ,

I am new here, but just became aware of a doctor in St. Louis, MO who

will prescribe LDN. I realize, depending on where you are in Iowa,

that this would be a 5 to 10 hour drive for you. Just wanted to throw

that out. Feel free to email me!

maestro

>

> Hi all,

> I am looking for a physician to prescribe LDN for my 15 year old son

> in the Midwest (We live in Iowa but I would happily travel to get the

> prescription). Anyone out there having any luck? My son was recently

> dropped from the Humira pediatric study due to severe site reactions.

> He has had small bowel crohns for about 5 years and nothing we have

> tried keeps him in remission. We have remicaid in our back pocket but

> for many reasons I would prefer to try the LDN first. Our Mayo clinic

> Doc says he would not prescribe it but would continue to monitor my

> son if we find someone else to prescribe. Sounds like a cop out to

me.

> Thanks

>

>

[Guest guest]

Dr. Jill P. , the Primary Crohn's/LDN Researcher at Penn State is

about to start a Study on LDN for Adolescent Children with Crohn's. You

might try and contact her directly: jps12@...

>

> Hi all,

> I am looking for a physician to prescribe LDN for my 15 year old son

> in the Midwest (We live in Iowa but I would happily travel to get the

> prescription). Anyone out there having any luck? My son was recently

> dropped from the Humira pediatric study due to severe site reactions.

> He has had small bowel crohns for about 5 years and nothing we have

> tried keeps him in remission. We have remicaid in our back pocket but

> for many reasons I would prefer to try the LDN first. Our Mayo clinic

> Doc says he would not prescribe it but would continue to monitor my

> son if we find someone else to prescribe. Sounds like a cop out to

me.

> Thanks

>

>

[Guest guest]

Apparantly I cannot Post another email. Email me if you want more info.

[Guest guest]

will do, nothing yetBeatty <beatty@...> wrote: , Would you please keep the group posted when you hear from Dr. ? I'm very interested in LDN for my teenage son. His doctor had a couple adult patients starting her study, but he wasn't comfortable prescribing LDN at this point. An adolescent study might be just the ticket to convince him. Thank you! Sally boyle wrote: > Hi Fritz, > I have read Dr. 's first study results and have actually visited >

with her study coordinator about the adolescent study. I asked her if > Dr. would prescribe for us off label if we came out for her to > meet and examine my son. I'm waiting to hear back from them but > appreciate Dr. 's direct email!!! > Thanks > > > *//* > > > >

[Guest guest]

I keep an LDN Dr List for USA and Overseas!!! Email me where you live and I will email you what I have in your area.

Hugs & Blessings,

Crystal

LDN_Users Group Owner

Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 2 years & 8 months on LDN with Skip's Pharmacy.....

Crystal's MS,TM & LDN Website

Crystal's LDN Gift Shop

Crystal's LDN Support Group

Skip's Compounding Pharmacy

LDN Website

Re: [low dose naltrexone] Re: crohnsHi Fritz,I have read Dr. 's first study results and have actually visited with her study coordinator about the adolescent study. I asked her if Dr. would prescribe for us off label if we came out for her to meet and examine my son. I'm waiting to hear back from them but appreciate Dr. 's direct email!!!ThanksFritz Bell <fsbx@...> wrote:

Apparantly I cannot Post another email. Email me if you want more info.

[Guest guest]

Chrystal,

I will be talking to my neuro soon about wanting to try LDN, I have MS; I am afraid that he won't give me a prescription for LDN if that happens where else can I go to get one. I live in Silicon Valley area, San , California

Thank you

Erma

Re: [low dose naltrexone] Re: crohnsHi Fritz,I have read Dr. 's first study results and have actually visited with her study coordinator about the adolescent study. I asked her if Dr. would prescribe for us off label if we came out for her to meet and examine my son. I'm waiting to hear back from them but appreciate Dr. 's direct email!!!ThanksFritz Bell <fsbx@...> wrote:

Apparantly I cannot Post another email. Email me if you want more info.

[Guest guest]

Dear ,

Thank you for taking the time to provide this insight. I really

appreciate it.

I remember you noting earlier that the LDN didn't seem to be working and

the group responding that taking it with Remicade could be cancelling

out its effect.

Very interesting that the 6MP seems to be what was keeping the LDN from

working!

My son dropped 6MP about 3 weeks ago after I complained to the doctor

that he seemed to be overly immune suppressed - after his 2nd Remicade

infusion, he was sick twice within the next 4 weeks with flu symptoms,

the second time definitely being a " summer virus " that lasted 2 weeks

and caused him to have to have saline IVs for dehydration and had him

running to the bathroom hourly (literally!). He did recover and had his

3rd Remicade infusion last Wed. So far so good. So at least we have 6MP

out of the picture, which sounds like a great thing based on your

experience.

It is really interesting to hear that you are successfully able to

benefit from LDN while still taking Remicade. AND that you were able to

get back on Remicade with no problem after being off for almost a whole

year! These points are definitely building my confidence to actively

pursue LDN sooner rather than waiting.

May I ask if you were on 6MP during the year you were off Remicade or

did you stop/start 6MP as well? I ask because the reason our doctor

kept Mark on 6MP while starting Remicade, was in an attempt to prevent

allergic response to Remicade long-term. So if you were on 6MP during

the year break, perhaps that is why you could get back on Remicade. But

if you weren't on 6MP during the break, then that is even more

encouraging for us.

I like your analogy of sugar/vinegar! As you say, the immune system is

very complex and the " cancelling out " may be over simplifying things,

esp if everyone would react as you have.

Would you say that you feel better on the combination of Remicade and

LDN than you did with just Remicade (or Remicade/6MP)? I'm guessing you

must if you say the LDN is working. What will make you feel comfortable

enough to quit Remicade and use just LDN?

Thank you again . I hope you continue to make progress.

Sally

Jensen wrote:

> this is the culpritt in all this - because WE REALLY WANT TO KNOW

> FACTS - for now we can only share experiences - and above is MY

> experience - this, so far, WORKS FINE FOR ME, and the mext step will

> (of course) be to quit Remicade when I feel it SAFE TO DO SO.

>

> IF MY experience with Remicade versus LDN is valid for your son

> too, _your dilemma MIGHT NOT exist_ - you may try LDN and continue

> Remicade for your son, at least no adverse reactions seem to

> occure (other than the sleep-disturbance thing).

>

> Just to underline: This is MY experience, and it may fit other

> " Crohnnies " , or it MAY NOT )))

>

> My best wishes for your son

>

>

>

[Guest guest]

Just my two cents: what if Remicade is working 100 % for , and LDN is cancelled out? There is also a possibility that LDN is working, but not Remicade? Or may be 50 - 50 %?

Ingrid

Re: [low dose naltrexone] Re: crohnsDear ,Thank you for taking the time to provide this insight. I really appreciate it.I remember you noting earlier that the LDN didn't seem to be working and the group responding that taking it with Remicade could be cancelling out its effect.Very interesting that the 6MP seems to be what was keeping the LDN from working!My son dropped 6MP about 3 weeks ago after I complained to the doctor that he seemed to be overly immune suppressed - after his 2nd Remicade infusion, he was sick twice within the next 4 weeks with flu symptoms, the second time definitely being a "summer virus" that lasted 2 weeks and

caused him to have to have saline IVs for dehydration and had him running to the bathroom hourly (literally!). He did recover and had his 3rd Remicade infusion last Wed. So far so good. So at least we have 6MP out of the picture, which sounds like a great thing based on your experience.It is really interesting to hear that you are successfully able to benefit from LDN while still taking Remicade. AND that you were able to get back on Remicade with no problem after being off for almost a whole year! These points are definitely building my confidence to actively pursue LDN sooner rather than waiting. May I ask if you were on 6MP during the year you were off Remicade or did you stop/start 6MP as well? I ask because the reason our doctor kept Mark on 6MP while starting Remicade, was in an attempt to prevent allergic response to Remicade long-term. So if you were on 6MP

during the year break, perhaps that is why you could get back on Remicade. But if you weren't on 6MP during the break, then that is even more encouraging for us.I like your analogy of sugar/vinegar! As you say, the immune system is very complex and the "cancelling out" may be over simplifying things, esp if everyone would react as you have.Would you say that you feel better on the combination of Remicade and LDN than you did with just Remicade (or Remicade/6MP)? I'm guessing you must if you say the LDN is working. What will make you feel comfortable enough to quit Remicade and use just LDN?Thank you again . I hope you continue to make progress.Sally Jensen wrote:> this is the culpritt in all this - because WE REALLY WANT TO KNOW > FACTS - for now we can only share experiences - and above is MY > experience - this, so far, WORKS FINE FOR

ME, and the mext step will > (of course) be to quit Remicade when I feel it SAFE TO DO SO.> > IF MY experience with Remicade versus LDN is valid for your son > too, _your dilemma MIGHT NOT exist_ - you may try LDN and continue > Remicade for your son, at least no adverse reactions seem to > occure (other than the sleep-disturbance thing).> > Just to underline: This is MY experience, and it may fit other > "Crohnnies", or it MAY NOT )))> > My best wishes for your son> > > ------------------------------------

[Guest guest]

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi ,

Besides LDN what other meds/suplements is your daughtertaking .... Also, has she been tested for food allergies? My daughter has been on LDN for close to 7 months now - the capsules didn;'t work for her but since changing over to the creme she has been feeling very well thank G-D.

Is your daughter using the capsules or the creme? I hope that your daughter feels better soon.

ette

In a message dated 6/27/2008 4:32:58 P.M. Eastern Daylight Time, lavatai@... writes:

Hi All,

My daughter started LDN last Friday for her Crohn's - makes it one week.

We switched her to mornings due to the sleep issues. Her "frequency" immediately reduced and bleeding slowed, but now she is having more frequency and looser stools.

I have allowed her small amounts of rice, but yesterday she had, without my knowledge, mashed potatoes.She woke today with some pain and frequency.

We had her on SCD, but it's really quite strict for her and I don't think she can maintain it when she returns to college. I try to at least keep her bread free, sugar free, and yeast free.

Did anyone else with Crohn's get worse and than get better ?

Thanks,

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

SAUNDRA - she probably reacted to the milk and butter in the mashed potatoes - NO DAIRY, WHILE IN FLARE-UPS, for us crohnies!!! that's been my advice!!

marshiris@...Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

SAUNDRA - good idea - look into the cream; it is highly recommended for us crohnies!! maybe she's allergic to the filler in the capsules!! jmccandless@... dr. mccandless is the one who developed the cream for her children patients, whose parents had problems administering the pills and capsules to the youth!! she has been successful with the cream with adult crohnies, too!! it by bypasses the gut, therefore, we get most of the med ingested into our system!! not mixed in with out ulcers and other inflammation in the area of the ileum, where we ingest our nutrients!! CHECK HER OUT!!

I HAVE GOTTEN PERMISSION TO PASS ON HER ADDY!!

marshiris@...

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

What is digestive Advantages for Crohns? Not sure if you know but Iron suppliments can be very problematic for the gut as well as some Probiotis - We used a Lab called Enterolabs that specializes in food allergies for Crohns. Where are you that they dont test for food allergies? Is she staying away from spices, citus frits, milk products also. Does she drink enough filtered water? Veggie juices are good if you have a juicer. No raw food, only soft foods for now I would say. Has her dr ever precribed any meds for her?

ette

In a message dated 6/27/2008 4:50:52 P.M. Eastern Daylight Time, lavatai@... writes:

Hi,

She takes Digestive Advantage for Crohns, and Freeda Probiotics, along with vitamIns and iron.

No other meds, They don't do testing for food allergies here, but she eats gluten free - very close to the SCD Diet.

She's taking the capsules with Avicil filler....wondering about that - maybe I'll check on the cream.

Thanks,

-- Re: [low dose naltrexone] Crohns

Hi ,

Besides LDN what other meds/suplements is your daughtertaking .... Also, has she been tested for food allergies? My daughter has been on LDN for close to 7 months now - the capsules didn;'t work for her but since changing over to the creme she has been feeling very well thank G-D.

Is your daughter using the capsules or the creme? I hope that your daughter feels better soon.

ette

In a message dated 6/27/2008 4:32:58 P.M. Eastern Daylight Time, lavataiblueskynet (DOT) as writes:

Hi All,

My daughter started LDN last Friday for her Crohn's - makes it one week.

We switched her to mornings due to the sleep issues. Her "frequency" immediately reduced and bleeding slowed, but now she is having more frequency and looser stools.

I have allowed her small amounts of rice, but yesterday she had, without my knowledge, mashed potatoes.She woke today with some pain and frequency.

We had her on SCD, but it's really quite strict for her and I don't think she can maintain it when she returns to college. I try to at least keep her bread free, sugar free, and yeast free.

Did anyone else with Crohn's get worse and than get better ?

Thanks,

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hello,

Please have her allergy tested and do a stool panel. Diagnos-tech has a good

stool panel (GI Panel 1) that screens for H. pylori, other bacterias and some

parasites. Genova Diagnostics has the CDSA 2.0 which is expensive but also good.

Allergy testing is crucial. If she reacted to potatoes, it may be because of an

allergy. You may be giving her something she is still allergic to as well (I

did the SCD and was eating everything I was allergic to and felt miserable). If

you do an allergy test, please be sure to do either a blood test with IGG AND

IGE or a skin prick/intradermal test. Most doctors only test for IGE and miss

the intolerances that take up to 72 hours to develop. This is something I know

a lot about from experience. Rotation diet, testing for bacterial influences,

and difficult parasites is all critical.

Crohn's is an autoimmune disease. So is allergies. There are a lot of things

that can influence crohn's. I just don't feel that SCD is right for everyone.

Cami

[Guest guest]

Hi,

She takes Digestive Advantage for Crohns, and Freeda Probiotics, along with vitamIns and iron.

No other meds, They don't do testing for food allergies here, but she eats gluten free - very close to the SCD Diet.

She's taking the capsules with Avicil filler....wondering about that - maybe I'll check on the cream.

Thanks,

-- Re: [low dose naltrexone] Crohns

Hi ,

Besides LDN what other meds/suplements is your daughtertaking .... Also, has she been tested for food allergies? My daughter has been on LDN for close to 7 months now - the capsules didn;'t work for her but since changing over to the creme she has been feeling very well thank G-D.

Is your daughter using the capsules or the creme? I hope that your daughter feels better soon.

ette

In a message dated 6/27/2008 4:32:58 P.M. Eastern Daylight Time, lavataiblueskynet (DOT) as writes:

Hi All,

My daughter started LDN last Friday for her Crohn's - makes it one week.

We switched her to mornings due to the sleep issues. Her "frequency" immediately reduced and bleeding slowed, but now she is having more frequency and looser stools.

I have allowed her small amounts of rice, but yesterday she had, without my knowledge, mashed potatoes.She woke today with some pain and frequency.

We had her on SCD, but it's really quite strict for her and I don't think she can maintain it when she returns to college. I try to at least keep her bread free, sugar free, and yeast free.

Did anyone else with Crohn's get worse and than get better ?

Thanks,

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi All,

My daughter is doing better - D has all but stopped, she pretty much slept all day.

She did get up and take the LDN before I could stop her, so I'm questioning whether it's the filler. If it was the filler, she should still be experiencing problems, right ?

I also checked back over her diet the last couple of days and see some potential troublemakers.

I'm thinking that it would be best to continue with the LDN until the cream gets here.

Could this be one of those "gets worse before it gets better" situations ?

Thanks,

[Guest guest]

HI JUST WONDERING IF ANYONE OUT THERE IS USING LDN FOR THERE CROHNS? AND IF

ANYONE KNOWS OF ANY DOCTORS WILLING TO PRESCRIBE LDN FOR CROHNS IN THE HOUSTON

AREA?

[Guest guest]

Yes, I am taking LDN for Crohn's/Colitis and believe it is slowly

helping. I had many, many months of a bad flare so wouldn't expect

instant return to good health, but my blood tests show improvement

and I have much more energy. Weight loss and diarrhea have been a

problem, but over the past few weeks I have been able to slowly

reduce the dose of prednisone - down to 10 mg. daily now and a few

months ago before LDN was up to 40 mg. daily and still not doing

well. I contacted Dr. McCandless on the internet and she prescribed

LDN for me. My gastro dr. refused to prescribe LDN, but my GP is

ready to prescribe if needed. Dr. McCandless has been helpful. I

started out with the LDN transdermal cream with Dr. MCandless but am

now using the 50 mg. Naltrexone tablet with 50 Ml. of distilled water

to make my own medication. I take 4.5 ml. at bedtime and have had no

problems at all with it. Good luck and be optomistic because I think

LDN does help.

Bobbie

>

> HI JUST WONDERING IF ANYONE OUT THERE IS USING LDN FOR THERE

CROHNS? AND IF ANYONE KNOWS OF ANY DOCTORS WILLING TO PRESCRIBE LDN

FOR CROHNS IN THE HOUSTON AREA?

>

[Guest guest]

DBergy, just curious. You said you used an alternative treatment to kill the bacteria that likely causes Crohn's. Did you undergo the anti-MAP treatment pioneered by Dr. Borody of Australia? Again, I'm just curious. I'm aware of this approach but don't know of too many people in the US who've used it. thanks!

[Guest guest]

D Bergy,

I would email you, but I don't have an email address for you.

Please send it to rachel@...

thanks,

At 01:11 PM 7/23/2008 -0500, you wrote:

I was targeting that bacteria and a

strain of sticky E-Coli, but I used a

readily available product to kill it off.

It is a controversial product and not suitable to discuss on the LDN

site. If

you want more info E-mail me directly.

Best Regards

D Bergy

Quoting amaestro4u

<amaestro4u@...>:

> DBergy, just curious. You said you used an alternative treatment

to

> kill the bacteria that likely causes Crohn's. Did you undergo

the

> anti-MAP treatment pioneered by Dr. Borody of Australia? Again,

I'm

> just curious. I'm aware of this approach but don't know of too

many

> people in the US who've used it. thanks! []

>

>

[Guest guest]

Maybe Dr. Gilbert Manso in Houston- if he's still in practice. We saw

him years ago and he was willing to prescribe anti-MAP for Crohn's when

it was controversial, so it seems he would do LDN.

>

> HI JUST WONDERING IF ANYONE OUT THERE IS USING LDN FOR THERE CROHNS?

AND IF ANYONE KNOWS OF ANY DOCTORS WILLING TO PRESCRIBE LDN FOR CROHNS

IN THE HOUSTON AREA?

>

[Guest guest]

I have moderate to severe Crohn's and have been taking the naltrexone for about a year now. It has greatly improved my quality of life. I do not take anything else for my Crohn's and the foot long fistula I had healed in about 3 months on the LDN. I urge you to give it a shot!Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out!

[Guest guest]

Hello,

Are you in NY City? Is there a dr. you can recommend, who accepts Aetna insurance, and is easy to see? Is it possible to reply to me individually without sending your email throughout the group?

Thank you.

O.

From: Smrtgrl96x@... <Smrtgrl96x@...>Subject: [low dose naltrexone] Re:crohnslow dose naltrexone Date: Sunday, October 26, 2008, 8:42 AM

I have moderate to severe Crohn's and have been taking the naltrexone for about a year now. It has greatly improved my quality of life. I do not take anything else for my Crohn's and the foot long fistula I had healed in about 3 months on the LDN. I urge you to give it a shot!

Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out!

[Guest guest]

Hello ,

Did your son ever go on the LDN. I am the one who sent you Dr.

Grossman's name. Did he respond to you? Did he recommend it? My son is

doing well on it now since January. His labs were the best in 4 years.

He did fracture his spleen in May though. Luckily we were able to keep

it in .

> >

> > > Hi Fritz,

> > > I have read Dr. 's first study results and have actually

> > visited

> > > with her study coordinator about the adolescent study. I

asked

> > her if

> > > Dr. would prescribe for us off label if we came out for

> > her to

> > > meet and examine my son. I'm waiting to hear back from them

but

> > > appreciate Dr. 's direct email!!!

> > > Thanks

> > >

> > >

> > > *//*

> > >

> > >

> > >

> > >

> >

> >

> >

>