randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i called my sister who has ra (but i think it's advanced lyme) and asked her about probiotics and what she's taking. i told her i would buy vsl and theralac for her.
she said she was taking a multivitamin, eating yogurt and taking something called silymarin. i told her she need to support her system with more probiotics and that i thought she should be supporting her immune system since she's on steroids and all with at least 100 units.
i asked about coq0, fish oil, milk thistle, and she said nope, not buying them -- junk!!!
she told me she talked to her doctor and he told her no, yogurt and a multivitamin was fine. he said that probiotics were overrated and she was doing iv arencia and methotrexate and not abx and didn't need a lot of additional treatment and that most of it was "scam" products.
i tried but she was adamant that she was doing everything right and no thank you, but shut the hell up...
so i did..that's it, i quit. sad thing is tho, she's so broke that my other sister and i have talked and we're the ones who will have to pay for her funeral, when and if. also she's deteroriating so fast she will not make it to retirement before she's in a wheelchair.
her finances are a mess but she won't listen.
dumber than stump, i swear. so i got so frustrated i almost said "don't call me when you realize how stupid your dr is and i ain't paying for your bloody funeral."
so that's it gang, no more worry for me. it's her life and if she wants to listen to some idiot that's her business.
but what kind of doctor says probiotics and vitamins are scams? i mean man....
i figured since i was paying she'd take them, nope, her godlike doctor said don't take them.
i swear...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
As the saying goes "You can lead a horse to water but you can't make him drink". So you did the best you could... but ultimately it's her prerogative to take your advice or not. I have 3 sisters so I understand the dynamic. No point in stressing yourself out... you did your part. Now let her do hers... it may not be what you want but it's her life and her death. Support her is all you can do even if you don't agree.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
for what its worth silymarin is milk thistle essentially, its the active ingredient anyway, wonder if she or her doctor know this.....It really is amazing and a little sad at the same time how much faith people put in docs, no mind of their own. If I d done that in my illness god only knows how bad off I d be by now.
Posts: 72 | From chico, ca | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Believe it or not the last LLMD I saw, who is top ranked, told me supplements are not worth anything. He said they are not regulated by the FDA so there is no guarantee what is in them. He did not even want me to take magnesium or B12. He also told me not to waste my money with artemisinin.
Since that time I have not been taking my supplements regularly. I am so discouraged, I feel what is the use? Your sister probably feels the same way.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I think one needs to be careful with all the supps out there. I believe in what Dr. B says.. if I'm correct.. probiotics if on abx.. fish oil.. coq10 and a multi vitamin.. basics. I would not buy into all that other garbage either. Most healthy people on a daily basis take what I listed above.
Posts: 129 | From West | Registered: Jun 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
unfortuneatly there are supplement scammers out there-but bottom line - you can only do so much. the stress of this is not good for YOU.
you have to let it go.. we have all been thru this stuff if we deal with this for long
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Nefferdun,
There will always be 2 school of thoughts... but I have seen with my own eyes how supplements and alternative medicines can save lives so just b/c one Dr doesn't agree does not mean I'm going to turn my back on them. Regardless, we are all different something that works for me doesn't automatically mean it will on you or vice versa. You have to try to see how your body will respond!
Remember to kick Lyme you have to
Immune Support Kill the bugs Detox
Missing any of the 3 key elements and you will not get well. I can personally say that having worked on my immune support and detox 4 weeks BEFORE starting my IV I'm handling the herx a lot better than I did while on orals before. And the IV meds are significantly stronger!!
Last but not least, my girlfriend is fighting Pancreatic cancer using only supplements, RAW foods and juicing... and she's 10 years post diagnosis. The conventional doctor abandoned her so she did what she had to survive! If she was to follow your LLMD and not take her supplements she would be dead today!! She is the one who is teaching me how to detox. She told me about the Castor Oil pack (you can read more about my post) and now I'm a believer!!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Sylimarin is milk thistle.
Moving to general support.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I can certainly attest to the fact that supplements DO work.
I took my daughter off of all of her supplements last week so that she could have a break. After about three days, I noticed that she wasn't acting herself.
She could hardly get out of bed for a couple of days before I realized something was very wrong.
The ONLY thing that we had changed was taking her off her supplements.
She is on a vitamin B complex, alpha lipoic acid, milk thistle, garlic. This is not all she is taking, but it's the main things that help keep her up and going.
I hate to see any thread on the lymenet become about bashing one thing or another. We are all different. A lot of new people come here looking for answers, and saying that supplements don't work is not going to help anyone, and more importantly, it will just confuse many.
I know MANY people personally that take herbs and supplements for many things, and guess what? They DO work!!!
Please everybody, let's be careful about what we say.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
"-------------------------------------------------------------------------------- I can't believe the stuff being posted here."
i'm confused about this statement...i hope you all are not talking aobut me.
i use many supps and can't get by without them---can't go more than 3 days w/o being back in wheelchair
but it is true and i am sure gigi and keeb and other knowledgeable alt ppl would agree that the quality of the supp is important-and it is easy to throw money away on supps by buying cheap stuff from china and other places(i'm not talking about 1st chinese now)
i maintained on buhner for a long time
but supps are complicated...sometimes you over do cuz many do the same thing...you really need to study them and start and stop them one at a time so you know what is doing what
my post was
1-telling randi that this much stress cannot be good for her and we just can't help everyone. its like alcoholics-if they are not ready to change nothing we do can make it happen...and the neg stresss is bad on us
2-stating it is impt to get good quality supps and understand what they do and how to use them and interactions etc
and for the record i HATE...ABSOLUTELY HATE BIG PHARMA
I ALWAYS MUTE THOSE FREAKKIN COMMERCIALS THEY HAVE ON THE TV CONSTANTLY
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by map1131: I'm reporting to Six, Lou, and everyone else that's anybody. I've had all I can take of the one sided agenda.
Pam
It looks like a balanced discussion to me. Personally, I've always taken lots of supps. I don't see the "agenda".
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Some people just stir it up and sit behind the scenes and hope they stirred it in their direction.
I'm not crazy six, I'm passoniate about my beliefs only because I've lived this nightmare. I don't want another person to suffer. I truly am not trying to being confortantional.
We know you and Tutu are both sides. We know you both know the only way to get relief is look outside the box, with or without abx.
I have never understood the politics of this illness. I've never understood why it seems we've been ignored by everyone but LLMD or doc like mine who realize this is not a simple illness.
I don't know why IDs or some of the powerful doctors are so against us. Why are they making us out to be weirdo who need to take some good psych meds and shut up.
I don't want to shut up. I have been told to help others by my Lord. He knows that I care. He knows I'm a good leader of people and wants me doing that with my heart and soul.
I want to be here but some people are trying to muddy the water. It has been decided by some that serious focus needs to be put back on the LLMD and the abx treatment.
Alternative medicine muddies the LLMD fight and Lyme activists agenda. I don't know if they think we make the "lyme folks" unintelligent or doing voodoo and therefore off our rocker?
Someone posted last night that their LLMD told them all those supps are garbage. They are not even controlled by the FDA. Hello?
The FDA is horrible at watching our food supply. They have to know their abx stuffed meats may have contributed to the illnesses in the US today.
The FDA must know that they are the ones that have failed us, not the supps, vit, herb industry. It take years of a lyme & co person suffering before they even think about looking outside the box.
Only after they realize that even with a LLMD and tons of abx they are not getting well. Many LLMD now recommend many hundreds of different supps, vit, herbs etc right along with abx treatment.
The great and powerful Dr B even talks today about some pretty unbelievable supps, herbs, alternative things to add to your protocol.
Dr B knew what was being done in the world of Lyme & Co was a high rated failure. The only way he could make a difference was to leave his practice and seek counsel and knowledge from other very lyme & co aware MD like Dr K.
I know the good Dr B is out there working for us. I believe in all my heart he is going to be the one in combination with Dr K and many other out of the box thinkers to find a better way.
I apologize Six and Lymetoo for being a finger pointer last night to you two.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
no lp, I wasn't ranting anything about your post. I just had the night from he!!.
I guess I just can't believe I'm still living in this world when some dum dums would say I had all the abx I would need to kill lyme, bart and babs.
That was July 99 and at first and for weeks I really thought a few more weeks and I can go back to my life and feeling like myself.
Sx started late 98 early 99. Sutle nothing too concerning. Coming and going sx. Easy stuff and then bam!!!!!!!!
Sorry I lost my cool.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
supps is the only thing that eases my sx to manageable and I get to do the little I do, can do's.
I have TRIED not taking them,,,it doesnt work long.
Citrical to keep from body robbing my teeth till there get to be huge holes right threw them.LLMD says this cant be right,,but it is for ME
Magnesium to keep muscles from getting too tight and keeps me regular (no small feat)
osteo-bi-flex to keep arthritis down to dull roar.
dr. best prostrate formula to keep me from spending more time in John at night than sleweping
Wal-zyer to keep my 30 yr old allergies at bay.
Zegrid to keep burping and heartburn from waking the dead.
baby aspirin cause my heart likes it.
and tylenol when working too many hours and body begins to bark at me!!!
now which should I get rid of and why?? How do I deal with sx that leaves undone???
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Even if I just eat totally vegetarian! The pain gets worse by a million!!!
I collapse and scream on the floor for hours and hours and hours, for days and days and day.
Then I quit eating! Much better,
Then I quit those supplements, and B shots,
even more tolerable.
I eat a little a bedtime, after I have taken all the mind-numbing, body numbing pills!
I also hate those commercials that big-pharma has on. Especially for Cymbalta!
They try to blame the pain on us being just depressed!
So my stupid PCP prescribed Cymbalta promising I would experience no more pain.
I had ended up in the emergency room 3 times. Only a morphine drip for 6 hours took the pain away.
So, Tthat is the only time, since I was 12 years old, almost 30 years ago, that I have been pain free.
I got re-bit 4 years ago, and also bit by a dog 4 years ago.
THe combo caused so much pain and illness.
I am desperate to get outside and do something, but I can't.
I am happy and love life, but the Cymbalta ads state that if I feel pain, it is my fault because I am just depressed.
What if someone has cancer? Lets say one of their first symptoms is pain in their body. Would doctors just tell them that they are depressed and crazy just go home and take Cymbalta?
No, they do not say that.
Cancer patients get the royal treatment, and we get treated like crazy losers!
I hate this so much! No one in my family cares either. Our parents and siblings are so stupid and uncaring!
I agree with RANDIBEAR and every one else posting a reply on this topic.
Thanks to the moderators who let us voice our hurts and disappointments here.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Missing, you just proved the point that EVERYBODY is different!! That's why it's so important for everyone to come together on the boards and have discussions about it.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I started a healthy shake program 2 months ago.
Everything was great until yesterday and I realized I hadn't had a BM in a few days. I had a really scarey night.
I thought it was from the steak I ate Wed night. It wasn't until this morning after drinking olive oil and using hands full of coconut oil to lubricate everything and I do mean inside and out, that I realized it wasn't just steak which I know better than to eat.
My body can't digest steak, pork chops, large amounts of pork. I try to stay away from pork products anyway. But steak and 3 oz of it. Never again will I eat steak. Ground beef products my body can do okay.
Anyway back to these nutritional shakes I've been doing. One a day M-F. I've lost 15 lbs in 2 mths.
Well my colon also released something else that was toxic to my intestines and colon. My colon was packed with black tar that could only be the mucor lining. So I couldn't pass this nasty waste toxic BM with steak mixed in.
I was in the bathroom from 7 pm last night till 3:30 this morning. I woke my husband up about 1 am and told him I'm really scared and you might need to take me to the ER for a enema.
The only thing worse to me is the idea of going to the hospital and giving history on my years of illness.
So I took my sleeping pill at 4 am and went to bed in terrible pain. It reminded me of the night of labor I had 32 yrs ago with my daughter.
I felt like I needed to give birth but this was thru the anal and colon area. This might be TMI....but it's the truth.
Cramping started at 8 am this morning and I had to run to BR. I gave birth to the largest black tarred BM I've had in my life. I had to get the plunger ready. Because the last thing I needed was to clean up more mess. Did I ever make a mess?
When I got on the scales today and seen I'd lost 4 lbs since yesterday, I knew what I experienced. My colon was so impacted with toxic waste I looked 6 mths pregnant last night.
I'm not selling this shake stuff. I don't know if it would do the same things for you? I just know what I lived thru last night and this morning.
Gigi always writes about our toxic colon and the waste that is not eliminated with everyday BMs, if you are lucky one that has BM everyday.
She always writes about toxic matter and how when toxins are sitting in the colon, they are being absorbed back into the body thru the lining of our colon.
I've posted many times about how important detox is. I was so toxic that I was even talking toxic, living toxic and writing toxic stuff on this board.
I have appt with my GI specialist Thurs that's been scheduled for months. I wish I knew which bad bacteria survives in my GI tract. I've done some serious damage to my anal area and it's time to do some laser treatments to try to heal that area.
I am having bleeding but nothing that I haven't had since '05. Hopefully I didn't tear anything. My internet search last night said be careful of this tearing and damage. I did search on compacted colon and started doing suggestions in first site I clicked on.
Thank goodness for the web last night.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
thank you all for your comments and i didn't want this to turn into anything.
i was saying a rheumatologist told my sister this and she's doing it.
well if it works for her fine, but i would think somebody taking iv treatments for arthritis would be open to supporting your system, whether by supplements or detox or something. her decisions and she'll have to live with it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
randi, you didn't turn it into anything. Your sister thinks doctors have a degree and know more than you dear.
Little does she know I'm going to give you a degree to hang on your wall. You can print it out and frame it and show it to your sister.
Watch for it this afternoon.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
thanks hon. talking to her, who's a radiologist, is like talking to those cows in the field.
totally useless.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Wow, that info from map1131 makes me want to do a colon cleanse! Geez!!!! I remember when my mom got impacted, it was awful. I noticed since I started back on WW, I haven't been able to doo-doo very much. Rats!! Now I'm paranoid. Time for the Oxypowder!!
PS I'm all for supplements and anything else that can help the body. I'm going back to the river and meditate on this one.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote: ...black tarred BM I've had in my life.
Black tarry bowel movement is due to blood that has been digested. So you are bleeding somewhere in the digestive canal.
You need to be evaluated by your doctor. If this happens again, save a small sample that can be tested for occult (hidden) blood at your doctor's office.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
No Carol I'm not bleeding. I've have lost my mucor lining in the colon before. I have lived to tell about the black tarry stuff that attaches to the colon.
It's years of waste and toxic matter that attached itself to the colon wall and it finally broke loose.
I did a 6 day(suppose to be 7) years ago. I did colonics during those days of no food. Drinking only water and supps by the handfuls.
When I lost my mucor lining then I was expecting that to happen, I had been prepared through a naturopath doctor.
I did not expect or realize this shake stuff I've be doing was detoxing my rather ill liver, gall bladder, stomach and colon.
I did not realize my mucor lining was sitting in the lower bowel compacted and loosened and it couldn't come out because it was 4 lbs of crap.
Literally 4 lbs of crap compacted and by the time I realized what was happening I was scared out of my mind.
Carol thank you for trying to be supportive and letting me & others know that black tarred crap can be indication of bleeding.....because that can be the cause for some people that are having digestion issues.
What happened to me Friday night Saturday morning was a blessing. My colon and anal area are not happy and TBTG I've had an appt schedule for 3 mths with my GI doc.
I'm fearful that I might have a little tear in my anal because I'm bleeding a little. But it's not much, and I've have them darn hemorrhoids problems many times.
I know where my hemorrhoids stand. Bad word to use...stand, because these guys are standing all right. They are so inflammed.
This is the lesson today in loosing mucor (I think I spelled that right) lining. You can go back in search on this site and see posts when I lost my mucor lining back in '05 or '06.
It took me awhile to gain comfort of doing something so hard as a 7 day cleanse with 4 colonics scheduled in one week.
That week of detox was one of my most impactful(no pun intended) on day 2 I think it was my body and the bacteria, parasites etc went to war with me for not feeding them.
It was the worse herx/healing crisis of my almost 12 year history with this illness. I had every last bad boy in my body pitching a fit.
They were not interested in eating the supps she had me taking. They were meant to tick them off and they did.
That naturopath no longer practices in this city. I wish I knew where she was. She could help some of you if she was near you.
She was also one of my angels in my life. I miss you Lisa and I think I will find you so you might help others like me.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Carol funny girl! It has been crappy. But much better, thank you. I actualy us coconut oil for my sore anus.
It works better than suppository or rx cream or anything else.
I put coconut oil on those round larger make-up pads and add a few drops of myrrh oil and it is so soothing and helps with inflammation too.
I had to become an anus expert or be in misery from GI constipation caused by some bad boy I call Bart.
I hate Bart. I wish he would die a fast miserable death. I'm trying. But it's actually a slow miserable death.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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