Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Boy! I have heard a lot of stuff has been going on so I just decided to pop onto this group to avoid the other " group " . It is so sad when we had such a wonderful group! I know that we will make this a wonderful group too! I have undetectable CML as of October 14. I see Dr. Druker in Oregon. I need to have another BMB/BMA this month (March 24-anybody going to be there?) to rule out mylodesplesia (sp). The reason is that I have become " Transfusion dependent " on Gleevec-Dr. Druker has never seen a case like mine before and thought he should begin ruling other things out. I need a transfusion every 5-8 weeks. My hemoglobin will not produce its own red blood cells. I am on Procrit 60,000 units every week! Other than this, I am a full-time Kindergarten teach of 28 VERY lively children! Been married 30 and one-half years and have two sons-ages 26 and 24. Was diagnosed January 8, 2008. Began Gleevec on April 10th, 2003 at 600mg. This past summer I was reduced to 400 mg HOPING that it would assist in the " highering " of my hemoglobin-did not help! Sincerely, Rosenthal Miami, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Hi , It's great to see you here! I have a question for you. When you had your last BMB, what kind of cellularity did you have? Do you know if it was normocellular or hypocellular? I would assume if your red cells are struggling, that it would be hypocellular so I'm curious. Anyone else have hypocellular marrow? Take care, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 Hi ; Its nice to meet you. I like, and never heard it put that way, Having " Undetectable CML " , sounds like a new medical term to me. I live 5 hours from portland and would love to have an appointment with Dr. Ducker. Im soory to here that your having to have blood transfusions. I think your in good hands and Im glad to hear that Dr. Ducker has focused on your problem being transfusion dependent. Okay ,, I do have to snicker and give you a poke in the rids. I have heard of getting an early diagnoses, but your Dx, of Jan.8 2008 is the best I;ve seen. " giggle " Hang Tough ttfn > Boy! I have heard a lot of stuff has been going on so I just decided > to pop onto this group to avoid the other " group " . It is so sad when > we had such a wonderful group! I know that we will make this a > wonderful group too! > I have undetectable CML as of October 14. I see Dr. Druker in > Oregon. I need to have another BMB/BMA this month (March 24- anybody > going to be there?) to rule out mylodesplesia (sp). The reason is > that I have become " Transfusion dependent " on Gleevec-Dr. Druker has > never seen a case like mine before and thought he should begin ruling > other things out. I need a transfusion every 5-8 weeks. My > hemoglobin will not produce its own red blood cells. I am on Procrit > 60,000 units every week! > Other than this, I am a full-time Kindergarten teach of 28 VERY > lively children! > Been married 30 and one-half years and have two sons-ages 26 and 24. > Was diagnosed January 8, 2008. Began Gleevec on April 10th, 2003 at > 600mg. This past summer I was reduced to 400 mg HOPING that it would > assist in the " highering " of my hemoglobin-did not help! > > Sincerely, > > Rosenthal > Miami, Florida Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2010 Report Share Posted October 4, 2010 Yes, Maren. Search for " naltrexone " on www.alldaychemist.org. It takes about 3 weeks to arrive into the USA (from India). These are 50mg tablets, 10 tablets to a card. Each tablet will make 10+ doses at 4.5mg per dose, so each card of 10 tablets makes 100+ daily doses. Shipping is $25, so it makes each dose cheaper if you are able to buy several cards all at once (for the long run if you stay with LDN). You put 50 ml (millileters) of distilled water in an amber glass jar (vitamin bottles work well), and dissolve 1 tablet in the water (takes less than 10 mins). Store in the refrigerator. Draw off as many cc's as your daily dosage. So, the standard dosage of 4.5mg would translate to 4.5cc of the liquid. I am using a syringe (without needle) left over from a veterinary prescription to draw the liquid out, but there are also baby-medicine spoons that measure in cc's and are widely available. I know what you mean about having the intuition that LDN will help you. I have fibromyalgia (among other autoimmune problems), which I had very well controlled through nutritional supplements for 10 years, but after a long haul of unremitting stress I had a health breakdown in the fall of 2009 and started searching for help. Found the LDN, and I felt certain it would help. It has indeed. Started it end of December 2009 and have been so improved since. hope this helps. -- At 07:09 PM 10/3/2010, you wrote: >Would someone please help me, I used to have active Systemic Lupus that I >got into remission with really good nutrition yet that has come back after >some severe emotional trauma recently. My doctor here in Washington DC >won't prescribe it off label,so stuck up here, and am currently physically >too weak to get myself to another doctor, does anyone have an address of a >reputable source where I can order some LDN? >Also, I can't swallow pills since a while, we don't know yet if Lupus >related or neurological, so it would have to be drops or a capsule with >powder I could open and mix into food. > >I have good inner guidance and intuition and feel strongly that LDN is >going to help big time and would really like to do this for myself. > >Any help is greatly appreciated-many thanks!! > >Maren ~~~ There is no way to peace; peace is the way ~~~~ --A.J. Muste Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2010 Report Share Posted October 4, 2010 Hi Maren,just some thoughts: if you have any gut issues (like me) you may want to use the cream version. I realize you don't have a doctor right now but you could try calling the compounding pharmacies in your area and ask which doctors are using ldn in their practice. Then you can still order ldn from any source. I use Coastal Compounding in GA for the cream. Make sure if you order to make yourself, that you get the fast acting ldn. I have never made my own. I wish you the best. JanFrom: Baker <vbaker@...>low dose naltrexone Sent: Sun, October 3, 2010 11:07:26 PMSubject: Re: [low dose naltrexone] Hello, everyone! Yes, Maren. Search for "naltrexone" on www.alldaychemist.org. It takes about 3 weeks to arrive into the USA (from India). These are 50mg tablets, 10 tablets to a card. Each tablet will make 10+ doses at 4.5mg per dose, so each card of 10 tablets makes 100+ daily doses. Shipping is $25, so it makes each dose cheaper if you are able to buy several cards all at once (for the long run if you stay with LDN). You put 50 ml (millileters) of distilled water in an amber glass jar (vitamin bottles work well), and dissolve 1 tablet in the water (takes less than 10 mins). Store in the refrigerator. Draw off as many cc's as your daily dosage. So, the standard dosage of 4.5mg would translate to 4.5cc of the liquid. I am using a syringe (without needle) left over from a veterinary prescription to draw the liquid out, but there are also baby-medicine spoons that measure in cc's and are widely available. I know what you mean about having the intuition that LDN will help you. I have fibromyalgia (among other autoimmune problems), which I had very well controlled through nutritional supplements for 10 years, but after a long haul of unremitting stress I had a health breakdown in the fall of 2009 and started searching for help. Found the LDN, and I felt certain it would help. It has indeed. Started it end of December 2009 and have been so improved since. hope this helps. -- At 07:09 PM 10/3/2010, you wrote: >Would someone please help me, I used to have active Systemic Lupus that I >got into remission with really good nutrition yet that has come back after >some severe emotional trauma recently. My doctor here in Washington DC >won't prescribe it off label,so stuck up here, and am currently physically >too weak to get myself to another doctor, does anyone have an address of a >reputable source where I can order some LDN? >Also, I can't swallow pills since a while, we don't know yet if Lupus >related or neurological, so it would have to be drops or a capsule with >powder I could open and mix into food. > >I have good inner guidance and intuition and feel strongly that LDN is >going to help big time and would really like to do this for myself. > >Any help is greatly appreciated-many thanks!! > >Maren ~~~ There is no way to peace; peace is the way ~~~~ --A.J. Muste Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2010 Report Share Posted October 4, 2010 >Hi Maren,just some thoughts: if you have any gut issues (like me) you may >want to use the cream version. I realize you don't have a doctor right now >but you could try calling the compounding pharmacies in your area and ask >which doctors are using ldn in their practice. Then you can still order >ldn from any source. I use Coastal Compounding in GA for the cream. > > Make sure if you order to make yourself, that you get the fast acting > ldn. I have never made my own. This is a bit of a confusion. It is the compounding pharmacies that need to be sure to use a fast-acting filler with the LDN *capsules*. If you order the tablets and make the liquid, there is no filler and it is ultra-fast acting all on its own. There are some specifications for the compounding pharmacies about how to compound LDN. Those rules are on the www.ldninfo.org website-- if you don't use the approved list of pharmacies, you will need to inquire with your pharmacy to make sure they are following the rules. If people will order their capsules from the list of compounding pharmacies on the website, there will be no concerns about the rules. People have had trouble with LDN not working in the past when their capsules were a) not properly compounded according to the rules, or the person turns out to be allergic or otherwise sensitive to the filler used, even if the filler was compounded according to the rules. Just to clear that up. -- >I wish you the best. Jan > > > >From: Baker <vbaker@...> >low dose naltrexone >Sent: Sun, October 3, 2010 11:07:26 PM >Subject: Re: [low dose naltrexone] Hello, everyone! > > > >Yes, Maren. Search for " naltrexone " on ><http://www.alldaychemist.org>www.alldaychemist.org. It takes >about 3 weeks to arrive into the USA (from India). > >These are 50mg tablets, 10 tablets to a card. Each tablet will make 10+ >doses at 4.5mg per dose, so each card of 10 tablets makes 100+ daily >doses. Shipping is $25, so it makes each dose cheaper if you are able to >buy several cards all at once (for the long run if you stay with LDN). > >You put 50 ml (millileters) of distilled water in an amber glass jar >(vitamin bottles work well), and dissolve 1 tablet in the water (takes less >than 10 mins). Store in the refrigerator. Draw off as many cc's as your >daily dosage. So, the standard dosage of 4.5mg would translate to 4.5cc of >the liquid. I am using a syringe (without needle) left over from a >veterinary prescription to draw the liquid out, but there are also >baby-medicine spoons that measure in cc's and are widely available. > >I know what you mean about having the intuition that LDN will help you. I >have fibromyalgia (among other autoimmune problems), which I had very well >controlled through nutritional supplements for 10 years, but after a long >haul of unremitting stress I had a health breakdown in the fall of 2009 and >started searching for help. Found the LDN, and I felt certain it would >help. It has indeed. Started it end of December 2009 and have been so >improved since. > >hope this helps. > >-- > >At 07:09 PM 10/3/2010, you wrote: > >Would someone please help me, I used to have active Systemic Lupus that I > >got into remission with really good nutrition yet that has come back after > >some severe emotional trauma recently. My doctor here in Washington DC > >won't prescribe it off label,so stuck up here, and am currently physically > >too weak to get myself to another doctor, does anyone have an address of a > >reputable source where I can order some LDN? > >Also, I can't swallow pills since a while, we don't know yet if Lupus > >related or neurological, so it would have to be drops or a capsule with > >powder I could open and mix into food. > > > >I have good inner guidance and intuition and feel strongly that LDN is > >going to help big time and would really like to do this for myself. > > > >Any help is greatly appreciated-many thanks!! > > > >Maren > >~~~ There is no way to peace; peace is the way ~~~~ >--A.J. Muste > > > > > > >No virus found in this incoming message. >Checked by AVG - www.avg.com >Version: 9.0.862 / Virus Database: 271.1.1/3176 - Release Date: 10/04/10 >01:35:00 ~~~ There is no way to peace; peace is the way ~~~~ --A.J. Muste Quote Link to comment Share on other sites More sharing options...
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