posted
Hi Orrn, I have had the same concerns for my daughter. Her doc recently put her on a massive homeopathic protocol. When I told her my worries about unregulated supplemts, especially so many of them, she assured me that the ones she has her on are highly regulated. They are from Germany, where the regulatory agency is much stricter. I think she only recently discovered this particular line of products; and she indicated that they are known by most of the major LLMD's. The most important thing though is that they are helping my daughter, whose gastric system was shot. We see real evidence of repair. If they are working on the obvious, I'm finally a believer that they are working in the more subtle ways too. Check with your LLMD. I think quality is the most important issue. As for the cost. I think if we had used supplemental support when she was first treated by a traditional doc with IV abx, we might have shortened the duration, as well as minimized the damage, of disease and treatment! I'm convinced that both lines of treatment are absolutely necessary in beating this.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
paraphrasing a general statement i read, or heard when taking more than 3 medicines, or (meds. + herbs ( + dietary supps.) or herbs + dietary supp., the chances of a doc identifying whats doing what, what can be attributed 'to what' become vanishingly small.
this is a paraphrase of a conclusive blurb of some study.
Posts: 2708 | Registered: Feb 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Orrn, There are times I look at the numbers of pills I take in a day and just shake my head...
Like Lymeout, I feel the supplements are vital for recovery, and I also think you asked a good question -- how do you really know when enough is enough?
I have followed my LLMD's suggestions pretty strictly. The only thing I've added to that mix are Cordyceps and a Chinese herbal mixture -- both recommended by my acupuncturist and approved by my LLMD.
I am definitely making progress -- nothing earthshattering but clear progress. That lets me know something is working, and I'd be reluctant to cut out anything I take at this point.
In terms of adding more...every now and then I read a post here that makes me curious. Sometimes I follow my curiosity, but mostly, I am staying on this pretty conservative track.
I also agree with Lymeout that quality is important, especially with certain things like the probiotic. I got the strongest formula I could find, and while it's expensive, I figure it's also necessary, considering the abx I'm taking.
The cost is something else entirely. I wonder every day how I'm going to keep paying for all this...
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
I remember Dr. B saying in a presentation that he had some patients who couldn't or wouldn't take abx. He was keeping them on top of the lyme with homeopathics. They are less dramatic, take longer to do the job; but I wonder if, in the long run, without the abx damage, they would provide a more permanent healing? "Food for thought"!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
These are the supplements I personally would take IF I had lyme (they are very close to the ones my son is taking...he had food poisoning...another mean pathogen!):
A good daily multiple vit. - mineral 2x/day. One without Ginkgo. Likely one from Metagenics. Ginseng is okay...and is very helpful.
Chorella, 5 pills per day, 2x/day at least.
CoQ10, 200mg 3x/day one with soybean oil in it. These are cancer fighting doses.
Gluco Reg by Solar Ray 2x/day. This is chromium plus acids. With Mg low, I know this increases my RISK of developing diabetes.
Host Defense by New Chapter. Mushrooms.Beta glucans. Bottle directions.
Alka Max by TriMedica, 1 capsule 2x/day.
Selenium, 200 mcg daily.
Essential enzymes with meals (to help conserve the nutrients needed to make antibodies).
S.O.D. by Solar Ray...to supply the antioxidant enzymes which I believe are missing due to low Mg.
Lecithin, 1 capsule from Carlson's with each meal.
Mg glycinate, 2 pills (=400mg) with a high potency B complex that also has Vitamin C in it at bedtime.
Mg citrate. 1 ml (dropperful = 52mg) under my tongue every 2 hours while awake.I'd get an insulin syringe (minus the needle) to measure out 1ml. I'd be careful not to contaminate the bottle and would keep it in the fridge and get a new bottle every week. It's cheap.
Probiotics..Essential Formulas (also contains nutrients), but I would occasionally switch brands to cover as many bases as possible. The various brands have some same, some different "good guy" bacteria. Doses one hour before bkfst. and lunch with a full glass of water.
Serene Plus by NeuroScience.
GABAMAX at bedtime same source as above.
This is what I would take...NOT what I am telling YOU to take!!! I am not a doctor or a nutritionist.
I am basing my selections on a LOT of research and on supplements a Psych RN+nutritionist (her husband is my son's doctor) DID prescribe for my son (whose beneficial bacteria, essential minerals, and neurotransmitters went "south". He tested as such. He is slowly improving.)
Yes...VERY expensive!!! Yikes. But, IMO...needed. What can I say? It was my son...and he had lost 25 pounds fast, was in very deep depression and his cholesterol level was 86 (bowel cancer warning). That's not a typo...his cholesterol was only 86. NOT GOOD.
P.S. A complete amino acid formula (usually powders you add to a liquid) might help with the brain fog. Get your doctor's input.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The only supplements I have ever taken are gut probiotics- Saccharomyces Boulardii, JarrowDophilus Acidophilus stuff, Solaray Anti-Yeast Formula and Diflucan.
I think people overdo supplements a LOT!!!!!!!!!!!Just my opinion!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymeloco
Unregistered
posted
I'm with you California Lyme. I also take the probiotics!
With all the symptoms of lyme and coinfections, how do you know which to eliminate when you think it's a herx, but could possibly be an interaction with certain vitamins.
Do you stop the antibiotics first? Or which vitamin may have an effect, and you don't know which one? If your taking soooo many vitamins and supplements where does one start eliminating to find out what the problem could be?
It's the same with allergies, food or inhalants. You have to eliminate things one by one to find out what the cause is.
It's just my opinion, and people can do what they want. If they feel it's helping them, go for it! Lots of money being wasted if not all are being absorbed!
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
This pathogen AND the antibiotics are depleting you of several very critical nutrients. It becomes a downward spiral.
Into a search engine, type in your Rxs (one at a time) and the word "depletes".
I DO agree that it is money down the toilet if the beneficial bacteria are missing (healing starts in the digestive tract)...but the beneficial bacteria need the various acids and enzymes...to break down the food you eat... to feed (them and us). Those acids and the enzymes are taking a hit too.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Malabsorption being the point that changed my attitude toward supplements! When my daughter stopped improving from abx, and gastric sysmptoms worsened, we realized that she probably wasn't absorbing well. She had been on nexium for a couple of years, was using antacids increasingly, had IBS problems. The supplements have restored balance that make nexium and antacids a thing of the past. I have seen her improvement and know it is directly related to the supplements and am now a believer!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Stomach acids are needed to breakdown food to feed the "good guys" in the intestine.
Those who are making TOO MUCH stomach acid...maybe there's a reason.
"Low stomach acids REDUCE the level of beneficial intestinal bacteria which is needed for the absorption of Mg."
http:www.ctds.info/5_13_magnesium.html
(And the beneficial bacteria make for us several B vitamins and vitamin K.)
Soooo....those who have MORE stomach acid maybe trying to PROMOTE the growth of the beneficial bacteria and the absorption of Mg if the reverse quote is true.
Latest research on IBS and ulcerative colitis...need for probiotics. Our (me too!) love of sugar likely is throwing off the balance...good guys versus yeast. Autistic kids often produce too much acid.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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the idea that one can have an adverse reaction when mixing many things, is almost common sensically trivial.
i made a "broad-stroke" painting of the picture of mixing many things.
when doing so, the chances of having an adverse effect(s) are virtually 100%.
as i recall, mention was made only of: 1. mixing meds. 2. mixing certain meds. with certain dietary supps.
consider also, the temporal contiguity of taking one thing(course of a medicine), and event(s), munificient, and adverse, occurring from, in "microwave time" to months out into the future.
good luck, and take care.
Posts: 2708 | Registered: Feb 2005
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mbroderick
Frequent Contributor (1K+ posts)
Member # 5220
posted
I agree with you Andie. I watched my son, Jordan, over a 2-year period gradually get better. Now he's a full-time student working out several times a week! This didn't happen without a lot of additional supplements - to build his immune system - to replace deficiencies caused by Lyme - to help moderate some of the cognitive problems caused by Lyme etc. etc. Yes, it was a lot and the expense was tremendous but it was worth every penny. I know that he wouldn't have recovered this fully without the supplements! Now that my husband, daughter, and I are all being treated, we're adding crucial supplements, as well. Time will tell, I suppose, but the regimen seems to be working.
Posts: 2097 | From PA | Registered: Jan 2004
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I was also overwhelmed by all the individual isolated vitamins which were recommended to me to take. I couldn't afford them all plus when taken all together no one really knows the effects they all have on each other or how they are absorbed and assimilated. That's why my personal decision has been to start taking whole food supplements which have all the vitamins, minerals and enzymes in a concentrated whole food form , When taken this way all the factors known and unknown work together in natural synergy to help us absorb and assimilate.
I have used powdered green drinks, Himalayan salt sole (for minerals and energy), herbal teas,completely totally raw honey mixed with propolis and bee pollen and Juice Plus. I have noticed a big difference. But I do feel that we have to approach health from several angles and can't expect a miracle all in one pill. We also need some form of excercise and still need to eat right...eliminating the best we can, sugars, white flour, coffee...etc
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
The only supplement I am taking at this time is acidopholous.
When Doryx was added to my abx with the caveat not to take it near supplements or vitamins, I decided to stop taking the supplements altogether. That included Artemesia, potassium/magnesium/Oscal/Multivitamin.
Since then I have had two pain free days. So far I haven't had any ill effects from discontinuing the supplements.
That's my story so far and I'm sticking to it!
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Too much of anything can be hazardous.
Many times people are taking more of minerals/ vitamins/herbs than they realize.
For example, lets say you take supplement #1 for Vit. C and then you take supplement #2 for Vit. B.
What you may not realize is that supplement #1 also has Vit. B in it. It is always good to read the ingredients label--all of it.
Supplements are just that--supplements. They are for things that you are not getting in your everyday diet.
It is also very important to cross check all your medicine to make sure than your supplements/vitamins/herbs are not counteracting the effectivness of each other or your medications.
A prime example of propaganda is the antacid with calcium. According to my old chemistry Prof. (who used to teach at NDame) Calcium can only be fully utilized in an acidic environment. The calcium addition is a ploy. You get no benefit from it. And the calcium they use in the product is the lowest quality available.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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posted
I keep an updated list of all prescribed meds and supplements, with all ingredients listed; and I take it to all doctor visits. There have been times when I have questioned the overlapping of ingredients, magnesium being one. I am still not always comfortable with any doctor's level of expertise in supplementals. But in the end, we all have to continually balance doctors' advice and self education. What we need is someone, or a group of professionals working together, who have ALL the answers! If anyone has found this, please let the rest of us know!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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A month after starting Bicillin/Artemisinin/Biaxin, I was feeling absolutely terrific. I started thinking about what I might want to pursue next professionally (have not been working for 3 years, and should not have been working for quite a while before that). I was thinking about travel plans, taking classes... You get the picture.
I was so excited about my progress, that I decided to start a number of supplements recommended by my doc. (I had stopped all supplementation last fall for the marshall protocol.)
Within a few days of starting supplements, I relapsed.
I am not going to insist that it was the supplements, and I am still taking them, in part because who the hell knows for sure why I relapsed, and in part because the thought of tossing more unused supplements is something I'm not currently willing to entertain.
Anyway, as I said, FWIW.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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