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BloodWell supplements 12 years 6 months ago #5081

  • widgetzoey
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I think I posted a question about this is the wrong discussion. So let me repost here, please. Has anyone heard of this, or more importantly, tried it???
Site is: www.getwellnatural.com/blood-well-herbal-dietary-supplement.aspx

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Re:BloodWell supplements 12 years 6 months ago #5092

  • JazzenJanzen
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No joke! I'd like to know this too....

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Re:BloodWell supplements 12 years 5 months ago #5441

  • april
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You can find a fairly long discussion regarding Bloodwell, over on the old discussion forum. Here's the link:


Scroll down about 3/4 of the page. I think for the most part, people were not too impressed with it.

OMG! Now I remember why I rarely come on this site anymore! The new format is soooo slooooow and cumbersome. It's like going back to dial up or something. No wonder there are so few postings. I'm amazed that there's not been some sort of uprising amongst the regulars.

April

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Re:BloodWell supplements 12 years 5 months ago #5469

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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April:

I don't think it's slow. What browser do you have?

Here's a link re: BloodWell, GetWell:

discuss.pdsa.org/topic.asp?ARCHIVE=true&TOPIC_ID=13968&SearchTerms=Blood,Well

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Re:BloodWell supplements 12 years 5 months ago #5474

  • eklein
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I agree with April, this site is much slower. I find it frustrating too. I have Windows XP and the most currect version of Explorer browser, my computer isn't really fast but this site is still slow compared to the other one and other computer stuff I do. Also cumbersome. I still visit often but I read fewer threads.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:BloodWell supplements 12 years 5 months ago #5475

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I just switched to Mozilla and everything is much faster. I was afraid to make the change because the last time I changed something, my computer went haywire. So far, so good.

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Re:BloodWell supplements 12 years 5 months ago #5480

  • april
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Sandi,

I was using Safari last night, which I have no problem at all with on other forums and such. Besides being incredibly slow, every time I open a page, it takes about 10 seconds for the page to jump around and reconfigure its size or something. Almost makes me get motion sickness from it! Not to mention, just incredibly annoying. Last night it took me almost 10 minutes to make a post, and then it didn't even show the link, so not a very helpful post, at that!

But, I took your advice and tried it on Firefox, and it does seem much faster, and I didn't get the jumping around thing. Still, though, much slower then the old site.
Also, I just don't like how you can see so little of the text and the page at one glance--seems there's a lot of wasted space. And, I wish the poster's name was on the left side, so I could easily see it. Since we read from left to right, it seems unnatural to have it on the right. Maybe it's just me, hard to teach an old dog new tricks, and I'm rather techno-challenged, but just glancing at the activity on the new site, it seems it's gone way down from before. So, maybe others are finding it frustrating too.

BTW, Erica, nice counts! Good for you!

April

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Re:BloodWell supplements 12 years 5 months ago #5832

  • rmhovey
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I'm 69 and had a viral-iduced ITP 9 years ago which resolved itslef in a few months. A year ago, following a respiratory infection, when I think my platelets went down, the doc gave me a dTpa (GSK Boostrix) shot as tetanus booster and 2 days later my platelelts were at 17K, then over a month down to 12K. Then on Prednisons 100mg tapering to 0 Jan 2010 and my platelets have gradually reduced to the 30s and low 20s. I have tried several homeopathic solutions Vacinn-aide (to counter vacinne effects), 2g Vit C, BloodWell/RestoreImmune for 4 months, all to no avail.

So far there's no evidENCE of the DTaP causing ITP in adults, though the product monograph says "BOOSTRIX should not be administered to subject who have experienced transient thrombocytopenia or neruological complications following an earlier immunisation against diphtheris and/or tetanus. I probably had a Dip shot when I was a kid, and the last tetanus was over 10 years ago. Don't know if I ever had a Pertussis shot. Web search shows 3 chidlren who edeveloped ITP following a DTaP shot and the son of a friend got ITP the same way & the docs believed it was the Pertussis responsible. He eventually recovered.

Have any of you heard of this happening? I Know Boostrex was only approved for use in adults in Nov 2008 so I wonder if I'm one of the first "adverse reaction" statistics?

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Re:BloodWell supplements 12 years 5 months ago #5833

  • rmhovey
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I'm 69 and had a viral-iduced ITP 9 years ago which resolved itslef in a few months. A year ago, following a respiratory infection, when I think my platelets went down, the doc gave me a dTpa (GSK Boostrix) shot as tetanus booster and 2 days later my platelelts were at 17K, then over a month down to 12K. Then on Prednisons 100mg tapering to 0 Jan 2010 and my platelets have gradually reduced to the 30s and low 20s. I have tried several homeopathic solutions Vacinn-aide (to counter vacinne effects), 2g Vit C, BloodWell/RestoreImmune for 4 months, all to no avail.

So far there's no evidENCE of the DTaP causing ITP in adults, though the product monograph says "BOOSTRIX should not be administered to subject who have experienced transient thrombocytopenia or neruological complications following an earlier immunisation against diphtheris and/or tetanus. I probably had a Dip shot when I was a kid, and the last tetanus was over 10 years ago. Don't know if I ever had a Pertussis shot. Web search shows 3 chidlren who edeveloped ITP following a DTaP shot and the son of a friend got ITP the same way & the docs believed it was the Pertussis responsible. He eventually recovered.

Have any of you heard of this happening? I Know Boostrex was only approved for use in adults in Nov 2008 so I wonder if I'm one of the first "adverse reaction" statistics?

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Re:BloodWell supplements 12 years 5 months ago #5842

  • Melinda
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Hi rmhovey!

I've had ITP since 1989 - had a tetanus booster in 1992 without any problem - had a tetanus booster in 2002 due to my hand meeting rusty wire and that booster took me out of my 8-9 year "remission" [lower than normal counts, no treatment].

I do not know what type of tetanus booster I had in '92, it was in the ER - nor do I know what type of tetanus booster it was in '02.

I did end up having to treat in '02 as my count tanked and wasn't coming up, that did the trick and I'm once again in "remission".

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Re:BloodWell supplements 11 years 11 months ago #10219

  • Theresa
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  • Diagnosed with ITP on 10/24, 2010. Platelets at 1,000. After many transfusions, a round of Predisone, IVIG, Dexa, and 4 weeks of Rituxan, I am finally staying above 100,000. Still in the 100s nine years later. Yay!
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I am using Bloodwell about 2 weeks now, so it's too early to tell. Actually on the suggestion of my doctor who said a few of his patients had some good results with it.

As to the tetanus shot, I also had one 2 months before I officially was diagnosed with ITP at 1,000. I had tDap, which includes pertussis. I asked my doctor about it, but he didn't seem to know anything about that. I have had extremely low counts, down to 1,000, a few times. Nothing seems to raise them more than a week or 2 at a time. Guess I have headed into chronic land!

Going to definitely try other alternatives.

Theresas

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Re:BloodWell supplements 11 years 11 months ago #10243

  • Lindy
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@ Theresa, do keep us updated whether Blood Well is helping you. Good luck!

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Re: BloodWell supplements 11 years 10 months ago #12088

  • PattiAnn
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Hello,
I tried the Bloodwell supplements and it turned out I was allergic to one of the herbs in their recipe. I experienced breathing problems after taking the supplements. This made my platelets lower, and increased my bruising.

I've heard of good success for others with these supplements. Good Luck, I hope it works for you!

I use several other natural supplements prescribed by my doc that are keeping my platelets between 33 and 50K.

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Re: BloodWell supplements 11 years 10 months ago #12090

  • sally
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It would be interesting to know which one caused your allergy.
I have been looking into the ingredients in Bloodwell - what they are used for and possible side effects. This is what I found I have on the internet. Thought maybe there might be someone out there who might find this info helpful and help them on their own journey.
The ingredients are Rheumannia, Astragalus, Discorea, Artemisia Capillaris and Agrimonia.
Rheumannia: is used mainly for boosting and balancing the immune system. I took it in a tablet called 'Rheumannia Complex' when first diagnosed for approx 2 months and got some positive results but nothing radical. I'm going to try it again but in a combination with another herb.
Astragalus: is also used for boosting the immune system and I have been taking it with another herb Codonopsis (a spleen tonic - In TCM the spleen is associated more with digestion). I have felt some increase in energy after taking this combination and have enjoyed taking them but although platelets have come up a bit it's not been as much as I would have liked to have seen.
Discorea: is a chinese yam used for tonifying the kidneys. In TCM kidneys are the organ associated with energy production. (a good combination with Rheumannia)
Artemisia Capillaris: is in the daisy family - Supposedly has anti-cancer qualities, promotes phagocytosis of macrophages. Also has some similar qualities to marijuana ??
Agrimonia: In the rose family. Found also in Europe and has been used to stop bleeding. Source of Vit K.
I have been mainly sourcing these herbs from a 'practioners only' brand from a naturopath working at a good health food shop. They have been in a liquid/alcohol form and I have had to add boiling water to evaporate the alcohol.
I have found the internet a great way to research these herbs and particularly like it when you get to see the plant and they give information on growing habits.
My feeling is that we Itpers are a sensitive mob and all of us have different associated ailments. I quickly abandoned the idea that someone will discover a magical cure for ITP after reading on this forum how different we all are and how sensitive platelets can be. But if some people are healing themselves from some awful cancers by working on improving their health and trialling different things then why can't we.?? At the very least we could contribute to the understanding this complex condition.
Best wishes, Sally

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Re: BloodWell supplements 11 years 10 months ago #12102

  • Melinda
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and it turned out I was allergic to one of the herbs in their recipe.

As a wise pediatrician told me when my boys were young: "nothing is non-toxic to everyone."

That's why when someone says it's ok because it's natural I always think what the pediatrician said. And I am not knocking anything so please don't anyone call me on the carpet or get mad at me, I am not against alternative treatments [even use some].

And Sally you are so right when you said you learned from this site "how different we all are"! What triggerd/caused my ITP was a gamma globulin injection, gamma globulin is IVIg, a treatment for ITP.

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Re: BloodWell supplements 11 years 10 months ago #12109

  • patti
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Sally - I would venture to guess the allergenic herb is astragalus. It is a strong herb and tends to be allergenic in people with hyperactive immune systems. Hopefully the person will chime in themselves, but my studies on astragalus have indicated caution with allergies. As long as one is not allergic to it, it should be fine to use.

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Re: BloodWell supplements 11 years 10 months ago #12110

  • Melinda
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As with everything - natural, man made - one won't know they are allergic to something until they take/eat/breathe it. But if one has had an allergic reaction to something they shouldn't take it again.

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Re: BloodWell supplements 11 years 10 months ago #12112

  • sally
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Melinda, There is no argument here that natural things can't cause allergies. All the hayfever sufferers of the world would attest to it.
I get the feeling though that we Itpers are a sensitive mob and should use added caution when taking things our systems are not used to.
TCM (traditional chinese medicine) has developed many widely accepted combinations of herbs to treat their traditional diagnoses (removing damp heat etc.). It was a strong belief that it is the particular combination of these herbs that is important. However, It seems that there are many people (my naturopath is one) who are wanting to understand more about the individual herbs and companies are starting to develop their own combinations - The Rheumannia complex I was taking had an ayurvedic herb added.
This forum advocates taking responsibility for our treatments and there is much energy devoted to understanding medical treatments. I believe the same responsibility should apply with other things we choose to put into our body - without impacting too much on the joy of living B)

Patti, As I mentioned I have been taking Astragalus for the past few months and found it to be quite gentle - lucky perhaps?? My WBC's were 2.6 (+ lots of 0's) in Oct. before I started to take and were 4.0 a week ago (just made the cut of mark for the first time). My WBC's have been showing a similar pattern to my platelets.
Lets hope one day we'll understand more about all this :silly:

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Re: BloodWell supplements 11 years 10 months ago #12114

  • patti
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As with everything - natural, man made - one won't know they are allergic to something until they take/eat/breathe it. But if one has had an allergic reaction to something they shouldn't take it again.


I meant someone who has other allergies. If they do, astragalus can be a problem for them.

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Re: BloodWell supplements 11 years 10 months ago #12115

  • patti
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Patti, As I mentioned I have been taking Astragalus for the past few months and found it to be quite gentle - lucky perhaps??


I think of "overactive immune system" in terms of allergies (food and otherwise) because that is where most of my experience lies. As Melinda stated, you don't know until you try it and some do well, some do not. Depends on the person. Personally, I like astragalus as a healing herb. I just know some people tend to be very sensitive to it (more then other herbs).

patti

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Re: BloodWell supplements 11 years 10 months ago #12118

  • Melinda
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And it is amazing - overnight one can develope an allergy to something. I really don't like medication of any kind - just never know how it will treat you.

It would be nice if you could do a skin test to see if a little patch of skin would react to something letting you know not to ingest it.

Sally you said:
TCM (traditional chinese medicine) has developed many widely accepted combinations of herbs to treat their traditional diagnoses (removing damp heat etc.). It was a strong belief that it is the particular combination of these herbs that is important. However, It seems that there are many people (my naturopath is one) who are wanting to understand more about the individual herbs and companies are starting to develop their own combinations - The Rheumannia complex I was taking had an ayurvedic herb added.
It's a shame they can't leave well enough alone - if things have been working for centuries [and TCM has been around forever] why try to mess with it. As the saying goes: If it ain't broke don't fix it.

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Re: BloodWell supplements 11 years 9 months ago #12343

  • sally
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Melinda, Sorry to take this long to reply but have been away to a retreat of sorts - No internet connection.
You seem to have a healthy respect for TCM. Have you tried it and how did it work for you?

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Re: BloodWell supplements 11 years 9 months ago #12407

  • Melinda
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Hi Sally - Sorry it took me a couple days to reply, was out of state.

I do respect TCM. I use acupuncture to help with a neurological problem, along with some western medication [very little med because I don't like it & do not want to increase the dose and I do have a wonderful neurologist who is all for trying alternative medicine and also respects that I am fearful of the meds for neuropathy. My acupucturist will sometimes tell me to look into this or that Chinese medication. But for me I am a little leery because my ITP was triggered by a gamma globulin injection and I came out of my little "remission" due to a tetanus booster.

So no I really haven't tried it - my acupuncturist felt that I had had ITP too long [16+ years] for it to help with that. Actually there was someone who worked with her who had ITP and the other acupuncturist gave her treatment and it did not help, if I remember right this person had had it a while too before trying acupuncture.

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Re: BloodWell supplements 11 years 9 months ago #12422

  • dcurtis
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I use several other natural supplements prescribed by my doc that are keeping my platelets between 33 and 50K.


Can you share what other natural supplements you were prescribed? I would love to be able to take some info to my hematologist about them!

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Re: BloodWell supplements 11 years 9 months ago #12465

  • sally
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dcurtis:
I'm not PSimmers but would love to share with you some of the supplements I use as I am sure they have helped get my platelets up from 60 to 100 (they are fairly stable and I have never had medical treatment).
Probiotics have been one of the best supplements to help with digestion, absorption and overall nutrition. I mix it with apple cider vinegar which assists digestion and drink at all different times whenever I feel like it but particularly with meals. I have always had a sluggish GIT but it has never been as good as it is now.
I use a good organic mineral supplement for general immunity and health. I also take additional magnesium particularly if I have sore muscles or some muscle spasms, which I usually take at night but sometimes will take a few extra through the day with meals.
I take fish oil particularly if I am feeling any inflammation ie. joints, muscles, but also I can feel when my spleen is inflamed :huh: Fish oil is on the warning list for Itp as it is a possible blood thinner however it was still recommended by Dr. Edwards at the ITP conference because of all it's other benefits. I have been taking it for 20+ years and have a 'feeling' about when I should take it. I have just been told that cod liver oil would be better for me because of the vit D - will give it a go.
I also take tumeric (not regularly) in a concentrated tablet for inflammation.
Also a thyroid supplement but might stop this soon if energy levels keep improving.
OOps nearly forgot the old Vit.C which I take as a powder mixed with a green drink and protien powder.
Yep, I'm a walking medicine cabinet but having been an RN I'm quite at home with it.
Hope this helps but we all need to tailor supplements to our own needs to a certain extent.
Best wishes and good luck

Melinda:
I also had many years of accupuncture but mainly for neck and shoulder pain, hormonal issues and general stress issues. I loved it.
I did not have a great responses to any chinese herbal complexes but I did have a miraculous response to one chinese herb, Dong Quai (Angelica Poly-something) for menstrual pain (caused by clots - sorry). I found it to be most effective when taken on it's own, just when the pain was present - it is a blood thinner. Anyway, I guess with this history and hearing from several people on this forum that they weren't too impressed with chinese herbs, I've decided I'd like to look at some of them individually or just in a combination of 2. I'm enjoying the journey and finding it interesting (especially while platelets are going up; touch wood).
Each to their own - how often do we hear that sentiment expressed here ;)

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Re: BloodWell supplements 11 years 9 months ago #12470

  • dcurtis
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Sally, thank you so much! It helps a great deal. I am printing all that out. I have to say that I have had ITP for over 20 years, and I have always been too afraid to really take anything on a regular basis. I am going to give the supplements a shot! I have been looking into magnesium for perimenopausal issues, so I was glad to see you also take that!

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Re: BloodWell supplements 11 years 9 months ago #12472

  • patti
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Sally, thank you so much! It helps a great deal. I am printing all that out. I have to say that I have had ITP for over 20 years, and I have always been too afraid to really take anything on a regular basis. I am going to give the supplements a shot! I have been looking into magnesium for perimenopausal issues, so I was glad to see you also take that!



Magnesium is a key mineral for overall health in general. Make sure you couple it with calcium citrate for good absorption.

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Re: BloodWell supplements 11 years 9 months ago #12477

  • Melinda
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Melinda:
I also had many years of accupuncture but mainly for neck and shoulder pain, hormonal issues and general stress issues. I loved it.
I did not have a great responses to any chinese herbal complexes but I did have a miraculous response to one chinese herb, Dong Quai (Angelica Poly-something) for menstrual pain (caused by clots - sorry). I found it to be most effective when taken on it's own, just when the pain was present - it is a blood thinner. Anyway, I guess with this history and hearing from several people on this forum that they weren't too impressed with chinese herbs, I've decided I'd like to look at some of them individually or just in a combination of 2. I'm enjoying the journey and finding it interesting (especially while platelets are going up; touch wood).
Each to their own - how often do we hear that sentiment expressed here ;)

Good luck with your Chinese herb research. I feel individually might be better - once you start putting meds together you have to look at them harder because you might not need the 2nd or 3rd one so why take a combination. I am so cautious about meds though because of the gamma globulin and tetanus booster messing me up - my feelings may be unfounded.

I love my acupuncture sessions too - if I could afford it I would go more than once a month. Tomorrow morning is my next one.

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Re: BloodWell supplements 11 years 9 months ago #12481

  • sally
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Yes, it seems logical to try them individually and that was my original plan. I think it was encouragement from my naturopath and reading somewhere that astragalus and codonopsis were a good combo that I tried them together.
Taking them in the liquid form and being able to taste them helps me to get more of the idea of the herbs.
It's working so far so I just keep being positive and researching.
I hope you feel wonderful after your session Melinda. I particularly like accupuncture before or after some massage - mmmmm Bliss :laugh:

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Re: BloodWell supplements 11 years 9 months ago #12488

  • dcurtis
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Ok. Will do!

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