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» LymeNet Flash » Questions and Discussion » Medical Questions » LLMd says no supplements not even probiotics

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Author Topic: LLMd says no supplements not even probiotics
purplemom
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Tell me your thoughts in this one:

My MD does not want me to take supplements (multivitamin, fish oil , calcium, vitamin D) or
PROBIOTICS.

I have been started on a small dose of every other day biaxin/plaquenil so I don't go off the deep end right away.

The supplement issue is contrary to everything I know and read. Any thoughts? and where did this thinking come from?

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TerryK
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I cannot imagine that this advice would be coming from an ILADS LLMD. My LLMD will NOT give antibiotics unless the patient takes probiotics.

What is his reasoning?

Terry

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coltman
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Is he treating you with Marshall Protocol? That is only protocol I know off is really strict on supplementation.
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22dreams
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If it's the doctor I'm thinking of, he doesn't use the Marshall Protocol.
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purplemom
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22dreams your mailbox is full, I'd like to know if we are talking about the same doc, can you send me a message with your email or empty your box?

Yes, this is an "LLMD, ILADS" physician whose name I received from this site.

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purplemom
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oh and no it is not the marshall protocol
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gemofnj
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i'd get a new doctor! and FAST.
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sixgoofykids
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Have you asked him why?

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sixgoofykids.blogspot.com

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RDaywillcome
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My llmd also said you don't have to take supplements, especially B & C.

If you eat the right foods, you shouldn't have to take supplements, because you'll only urinate them out anyway, and I don't know about you, but I don't have that kind of money to spare!

I'm sure he/she knows what they're talking about.
Some doctors DON'T have their hands in the till, if you know what I mean.

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Saskat
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I started abx while on a probiotic that turned out to be ineffective for me.

I got a raging yeast infection that has delayed my treatment for several months.

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Renee K
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RDaywillcome

with chronic illness the body uses up nutrients faster than a healthy person while it tries to heal itself.

there is no way you can eat enough of the "right" foods to give adequate amounts of essential vitamins

Plus many with Lyme have digestive problems and absorbsion issues which necessitate the use of above normal amounts of supplementation.

Even a healthy person, with a well balanced diet can usually benefit from a basic supplement due to the poor quality of our food supply and all the chemical exposures we have in our daily lives.

That is an old line about just "peeing them out anyway" one used often by conventional docs to discredit anything the alternative world uses to promote health.

I can tell you exactly what body process each supplement I take is meant to fix AND Vitamin C is one of the nutrients that has helped me the most

There can be no blanket statement that the supplements just don't help.

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purplemom
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Rdaywillcome probiotics are a mainstay with antibiotics

adequate calcium untake very important for women and i don't get 1200mg/day

lots of studies show most of us are deficient in vitamin D

fish oil help with inflammation and depression and a host of other things

some supplements can be a waste but some are very important for sure

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TerryK
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I'm very surprised that this comes from an ILADS LLMD.

It's just good common sense to take probiotics during long term abx and afterwards for quite awhile. Antibiotics wipe out the intestinal flora that keeps candida and C. Diff and possibly other bad pathogens under control.

Wipe out the good guys and candida and C. Diff have lots of resources to grow. Add to that a depressed immune system (which all chronic lyme patients have to some degree) and you are ripe for an infection.

I would not be able to take abx if it were not for supplements. 50 years of infection would have done me in I'm afraid if I hadn't been using supplements all along. I am happy to take them because they make me feel better.

RDay said:
I'm sure he/she knows what they're talking about.

Not in my opinion or in the opinion of many others.

Terry
I'm not a doctor.

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jkmom
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Not taking probiotics just seems like a bad idea, to me.

My daughter's LLMD doesn't really recommend supplements either. He says he hasn't noticed a difference in kids that take them and kids that don't and it is hard enough to get them to take their abx. He does believe she should take probiotics.

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lakes592
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Sure it is it's Dr. D. I just ignore that part and take them. I listened to him the first go round and ended up with terrible yeast problems. I'm not willing to do that this time around.

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

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Tincup
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If you were to have an allergic reaction to any of the supplements while on antibiotics... you wouldn't know what caused what.... and ALL meds and supplements would then be on the NO list.

Sometimes the supplements can cause problems (major problems)... and taking them without having a need too is both expensive and not helpful in many cases.

You want to attack what are causing the main problems right now... which are the infections.

Each time you take probiotics they are wiped out with the next dose of antibiotics. Kinda like throwing money down the drain.

You asked for thoughts on the topic.. not if we agreed with them or not.

[Big Grin]

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Cass A
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If 80% of Lymies have KPU--severe wasting of zinc and B6--how is one supposed to get better without supplementing?

Also, meds eat up the B vitamins. This can cause serious emotional problems.

Yes, allergies can be a problem--so you just add one at a time.

Best,

Cass A

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Trevor1
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Your digestive tract will be done for on biaxin/plaq without probiotics.
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luvs2ride
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My personal experience:

Vit C in large doses kept my blood pressure normal. Stop the C, blood pressure went up. I am no longer having this problem and have dropped my Vit C.

Magnesium stopped severe foot and leg cramps. I still use this.

Vit D3 (5000 IU daily) shrank my herboden's nodules. They are almost nonexistent today. My doctor said "in the rheumatological field, this NEVER happens"

I am on a bucketload of detoxing herbs. Stop them and joint pain returns. They are absolutely essential to my healing process.

Probiotics? I wouldn't dream of being without them and while on them, I have cleared H. Pylori and Babesia ducani.

I also eat a stellar diet and believe in it.

V

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When the Power of Love overcomes the Love of Power, there will be Peace.

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purplemom
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Just to let you know it is not Dr. D, perhaps someone who follows his course?

I will talk to him more about it at the next appt.

I've never heard of probiotics causing any

allergic reaction and all these supplements are

ones I have taken for years that I know I have

no problems with so it wouldnot interfere with

discerning an antibiotic allergy.

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lakes592
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Ok wrong guess...lol Second guess would be doc in Lebanon that he trained. Good luck to you. The whole thing is so frustrating!

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

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gwb
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I recently got off of Prilosec that I've been on for two years and the only reason I could do it is because of the probiotics and eating lots of Goat Milk yogurt (unsweetened).

I eat lots of yogurt and take three of four probiotic capsules daily and my stomach is in the best shape it's been in years. I have no acid problems lately and I really believe it's the probiotics that have helped me to achieve this.

Gary

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Wimenin
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My two cents... get a different LLMD.

You can't take abx long term without probiotic supplementation and not have digestive issues, and eventually yeast issues too. Abx will wipe out your good gut flora, and you need to replenish them to maintain a healthy gutt flora balance.

As for the other supplements, you take them based on need, not to simply take them. Your LLMD should be looking at your entire body health to determine what other supplements are necessary. Ex: twitching, migraines, ...means more magnesium...which is one of the things most lyme patients are deficient. D, B12, etc..should be based on if you're deficient. Oregano oil for fighting yeast overgrowth, etc.

So my recommendation..if taking abx, take a probiotic too. And take supplements based on need. Also, often LLMDs will tell you to take some supplements in order to ween you off abx (Cats claw, garlic, olive leaf).

Now, remember that you dont take abx and probiotics at the same time. Take them at least 3-4 hrs apart so that they can both work without working against each other.

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lpkayak
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has anyone mentioned sbc here...the one that stops c-diff

c-diff can be fatal

i can't believe any llmd would not order probiotics with long term abx...so crazy

i'm from nh too and when i had my knees replaced in concord hosp they ordered probiotics...they didn't say it was cuz of the abx..each time i got the pill the aide told me it was to "help me heal"

was pretty dopy after surgery but i was aware enough to realize this was a good thing-very progressive and i thought it was so cute how she told me each time it was to make me heal

also-at that hosp(and rehab) they had no problem letting me continUE all my supps. i did have to give them to them in the original bottle and tell them how much i took and they brought it to me at the right time.

i have been hospitalized many times and was never allowd my regular supps

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Lyme? Its complicated. Educate yourself.

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Tincup
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"I've never heard of probiotics causing any allergic reaction and all these supplements are ones I have taken for years that I know I have no problems with.."

People do have bad reactions to probiotics. I am one, just for example.

You can develop allergies to anything at anytime... even after taking it for a long time.

Mixing supplements with meds can change the reactions.

Not trying to argue... just want you to be aware why the doc may have said that.

[Big Grin]

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Lymetoo
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Find a new dr!! This one is NOT an LLMD with a brain!

Taking abx without a probiotic is dumb.

--------------------
--Lymetutu--
Opinions, not medical advice!

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ping
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purplemom,

What a strange situation!?

I agree with Tincup that you can be allergic to any probiotic or supplement at any time. In fact, I'm allergic to most supps I've tried and don't buy or use them, unless I absolutely have to and know ahead of time the particular brand to try. Good advice NOT to use supps on a regular basis; I agree that it will muddy the waters more than anything.

However, the advice against finding a good acidophilus that you're not allergic to is NUTS! You will end up so overloaded with yeast that it will take you a very long time to recover. Not only that, but you also need an rx for Diflucan or Nystatin to assist with prevention of candida in the first place. I'm a year and a half off abx tx and I still battle yeast!

Others are right - Lose the alleged LLMD schmuck you have and find another!

ping
"We are more than containers for Lyme"

--------------------
ping
"We are more than containers for Lyme"

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RDaywillcome
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First, let's get one thing straight. The llmd I'm referring to, didn't say NOT to take them.

He said you don't have to if you don't want too.
Although, he does believe in NOT taking vitamin B & C.

I believe if your primary or llmd are doing bloodwork, they would see what your body is lacking.

Through bloodwork, she did find a significant loss of vitamin D. I took an rx for that for three weeks and was back to normal.

I take a vitamin D on my own anyways now, but she never told me too.

I also agree with Tincup about taking so many different things, how would one know if any problems you have aren't caused by the supplements?

What if your body doesn't require all those nutrients? Is it possible that too much might be a problem?
How do you know? Probiotics are alright to take, but I had more yeast infections OFF of antibiotics, than on.

Yeast infections can also be caused by, diabetes, thyroid, and other problems.

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Eliz428
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Purplemom,

My husband went to the same doc I think. Here's what I understand him to have said. You can't get to an underlying issue when you have a lot of stuff in your system. You need to have a clean slate for treatment. He did not tell hubby not to take probiotics as long as he is regular when he takes it. He did tell him to stop the rest of the supplements.

I believe he said that some of them interfere with the absorption of the antibiotics. One of those being calcium that seriously interferes with the absorption of antibiotics. My guess also is that he wants your system clear of those supplements for your next bloodwork so that he can see how your body is functioning without them.

We thought it was strange at first too, but with all of the people that we know that are sick, many of them are taking so much stuff how do they know what's helping and what's not. We're going to give it a try. My husband doesn't feel a bit different without the supplements and the antibiotics are working. It's saving us a ton of $$$ too.

Wouldn't it be interesting to find out that all of these supplements are what's keeping some people ill instead of helping them to recover? Don't anyone jump down my throat I'm just hypothesizing.

I agree with the probiotics. I can't live without them. But I wouldn't throw the doc out with the bath water just for that one statement. Tell him you are prone to yeast and need them. Like I said, he told my husband it was ok to continue with them.

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TerryK
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Eliz wrote:
Wouldn't it be interesting to find out that all of these supplements are what's keeping some people ill instead of helping them to recover?


Not jumping down your throat, just got a laugh out of what you said. It would be interesting but not likely for some of us. I would love to cut my supplements out. I've tried but I get a lot sicker.

There is no doubt that some of us need them. Nutrigenomics, anti-inflammatories, detox supplements, probiotics etc. allow some of us to stay in treatment when we would not be able to otherwise.

Those who say they don't need them, more power to ya. Wish I was one of you. I HATE spending the money and shoving pills down my throat and staying on a schedule so I can get them all down in one day AND having to learn about the contraindications etc. etc. etc..LOL No person would choose to take them over not taking them if they felt they didn't help.

I'm sure my LLMD would LOVE not to have to bother learning about supplements. Reading supplements of patients, looking for contraindications etc.. He feels without a doubt that it helps his patients. My experience is that it does. I prefer not to suffer needlessly. To each his own.

Personally, I feel the docs explanation does nothing to provide insight into his thinking. I would never stay with a doctor who did not want to learn about the benefits of supplements for patients like us unless I had no other choice.

Edited to add:
Some good points about possible interference with abx. It's a good idea to take supplements well away from abx.

There are some supplements that make abx work better such as niacin, biofilm busters and anti-inflammatories.

Terry

[ 09-02-2009, 08:38 PM: Message edited by: TerryK ]

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Lemon-Lyme
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My ILADS doc isn't real big on supplements. He doesn't recommend any, but he does recommend taking a probiotic.

But he said it was fine to keep taking the things I had been (CoQ10, magnesium, fish oil, etc). His main concern was starting a new supplement and then if I noticed benefits or changes in symptoms. As then he couldn't tell exactly what was working, the supplement or the antibiotic.

Which could possibly be the case here. Although not recommending a probiotic is just baffling.

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DaisyJane
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LymeMD had a blog post about supplements for Lyme patients a while back and is pretty much in agreement with purplemom's LLMD.

My LLMD also doesn't think they offer much value.

http://lymemd.blogspot.com/2009/01/vitamins-and-supplements.html

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Amanda
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I wasted so much money taking supplements I didn't need, or that interfered with my meds. It think it is a very good idea to not take them a while, have blood work done, and then see what is low. This can also help the MD determine which systems might be affected by the TBIs, thus giving them a better idea of the disease and how best to treat it.

Some herbs and supplements directly interfere with either absorbption of abx (like Calcium), or decrease the effectiveness of some of our commonly used meds (like milk thistle, artemesea)

Probiotics should be taken at least 2-3 hours away from abx. Otherwise the abs just end up killing off the probiotics, which wastes money on probitiocs AND reduces effectiveness of abx.

We just don't know enough about how all these herbs and supplements affect the abx. Just keep track of your bloodwork from time to time so you know what you need.

--------------------
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Lymetoo
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Purplemom.. I do hope for your sake that you will decide to take probiotics.........and yes, 2 hrs away from abx.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lpkayak
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my first llmd put me on a bunch of supps and some abx but they were wrong dose etc and after a year i was no better and out 10,000.

from then on my llmds have not been big on supps but always pushed probiotics and sbc taken away form the abx

they also wanted me on cosamine ds...it has had a real study done that shows it is absorbed and i have that gene that predisposes me to arthritis

after that...i took dr b's list and started one at a time...to see how it made me feel...then paid attention when i ran out for a few days to see if there was a change

i didn't think some of them gave me enough for what they cost

but i really cannot be without a number of them

over and over...if i run out of certain ones i go backward fast

thats how i have done it for over 10 yrs now...but i NEVER take abx without probiotics and sbc

my son got c-diff on tx and that is scarey

also-now al my llmds wnat me on nystatin and diflucan also when on abx-but that has only been the last few years

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Pinelady
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I agree with most here. If you do not do something

to keep the bowels in check from the killing of the

good bacteria with as well as the bad and you do

not do something to prevent yeast it will take over

and you will be in trouble. I would find a good

LLMD. This is insane.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
DaisyJane
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quote:
Originally posted by tabers:

I firmly believe that too many other drugs, supplements, vitamins/minerals even chinese herbs muck up the mix when you are on the antibiotic regime. When you are on antibiotics you don't want other things to interact with them. Food/drug interactions are more common then most think. The more drugs you are on the more chance for interactions and the more work your liver has to do to eliminate the mess.

Yes, and I read so many posts where people believe they are "herxing" all the time and it is likely really nothing more than feeling ill from the bad mix or high doses of all the various supplements that they are ingesting.

[ 09-03-2009, 09:07 AM: Message edited by: DaisyJane ]

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gemofnj
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i can understand this doctors point of view by 'clouding issues' with too many unnecessary supplements, however,

not ENDORSING a refrigerated, high culture/strain probiotic while you are pumping up your patient with loads of harsh antibiotics is jeopardizing that patient's gastrointestinal health--and that could have a very serious outcome.

at the very minimum he should incorporate the probiotics and an antifungal because it always comes with the antibiotics territory.

i always took basic supplements, (and still do) including immune support and feel they helped to balance out the toxicity of the abx.

IMHO getting your immune system back up to functioning is half the battle towards recovery.

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btmb03
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I'm a bit torn about this issue - other than probiotics the only supplements I "swear" by are Fish oil, magnesium, B vits.

I'm trying desperately to try and reduce the intensity of the herxes and horrible inflammation/pain through supplementation (highly touted by my doc) but am not sure they really "work".

How can one reduce inflammation produced by toxins if not thru supplements? I'd love to know!

[ 09-03-2009, 04:12 PM: Message edited by: btmb03 ]

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purplemom
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I do understand the clean slate theory. Of the supplement I took they were all for specific reasons and backed with a lot of research. (ie, my vitamin D levels were low) I work in clinical nutrition and get things wholesale so it is not a huge financial for me.

ok so we know the calium interferes but none of the others do.

I'm actually willing to skip the others but not the probiotics. I think it is nonsense.

For those that mentioned you were treated by this doc, are you better? and if you stayed off probiotics did you get over the yeast infection?

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purplemom
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By the way, THANK YOU for all of your input:)
Posts: 207 | From NH | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
purplemom
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daisyjane,

just to clarify, your LLMD said No probiotics as well?

I think there are 2 different issues here:
#1 the probiotics
#2 all other supplements

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massman
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Many docs know oh so little about supplements. There are courses in med school, but if I recall correctly they are not required and are short.

Most supplements are made by drug companies. They make or use "fractions" of naturally occurring compounds. For instance Vitamin C, as it appears in an orange, has many parts besides ascorbic acid.

they have naturally occurred together for a reason or reasons. Yet often only ascorbic acid is sole as "C". What if your body needs some of the other parts ?

Don't mean to muck things up further, but there is a great book - The Real Truth About Vitamins and Antioxidants.

And on the amounts - many sick bodies get more overwhelmed by tons of supplements. And there are some contraindications. I like herbs and they seem to like me but there are a bunch I cannot take as they come with contraindicatons to not mix with anticoagulant drugs.

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Amanda
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I am posting a new thread entitled "Vit C and other supplements may worsen Lyme".

I think its important to consider that given the case histories (including death), at a minimum we know that high doses of supplements, herbs provided no benefit for these patients. At worse, they may have actually worsened the patients.

--------------------
"few things are harder to put up with than the annoyance of a good example" - Mark Twain

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purplemom
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massman,

good point, years ago when I went to a naturopath and started a ton at once. I had major problems, supplements can interfere with many drugs and can cause issues

the ones I took recently were well researched and come from only the highest quality tested independently and i had no problems with them and I do believe they helped my pain and depression

[ 09-03-2009, 08:23 PM: Message edited by: purplemom ]

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Looking
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I would be wary of getting a fungal infection when on antibiotics if you don't take some form of probiotics.

Like the guy at work I know who never takes any sort of supplements but got an infection in a bad cut so he was put on antibiotics. He laughed when told to make sure he ate yogurt or took probiotics because his doctor never said anything about it.

A week later he was back asking for more info because he had a seriously uncomfortable yeast infection on his male parts -- something he had never experienced in his life.

I certainly do think we should take natural supplements that are free of excipients -- I think the body may view these adulterated supplements as just more toxins and may not be able to benefit from them.

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AliG
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Just doing some research to try to figure out why a Dr would actually recommend AGAINST using probiotics &, though I haven't sorted it all out yet in my mind, I've come across things like one strain increasing inflammatory cytokine production & another decreasing it.

Perhaps, when testing is so unreliable, it is easier to differentiate herxing from die off vs probiotic-induced inflammation? or perhaps increased cytokines could cause more severe herxing and skew ability to estimate bacterial load by Tx response?

I also read something about some probiotics preventing apoptosis, which freaked me out a little. I have much more reading to do if I'm going to formulate an educated opinion of my own on this.

It would seem that different strains of probiota have different impact on our system & perhaps that could skew the clinical picture.


Perhaps he's read this, or read the same studies as the author?


Anaerobe. 2009 Aug 20.

The fascination with probiotics for Clostridium difficile infection: Lack of evidence for prophylactic or therapeutic efficacy.

Miller M.

SMBD-Jewish General Hospital, McGill University, 3755 Cote-Ste-Catherine, Montreal, Quebec, H3T 1E2, Canada.

BACKGROUND: The association of Clostridium difficile infection (CDI) with antecedent antibiotic use suggests that perturbation of normal intestinal flora is an important inciting factor.

Therefore, the use of probiotics for the prevention and/or therapy of CDI is considered to be theoretically effective.

METHODS: A non-systematic review of the literature evaluating the prophylactic and therapeutic efficacy of oral bacterial or yeast products for CDI, as well as the "quality control" and deleterious effects of these agents.

RESULTS: There is no convincing literature which supports the use of bacterial/yeast products to prevent CDI.

There is one prophylactic study from the United Kingdom which showed efficacy, but it has been widely criticized as flawed or not generalizable.

One other small case-series described the efficacy of S. boulardii in preventing CDI relapse, but only in a subset of patients.

Many bacterial/yeast products do not contain what they are purported to contain, and may contain other bacterial/fungal constituents not listed on the label. S. boulardii preparations may predispose to bloodstream infections in recipients, and have been associated with fungemia in contiguous patients when prepared at the bedside in intensive care settings.

CONCLUSIONS: There is no persuasive evidence to support the use of bacterial/yeast products for the prevention or treatment of CDI.

Oral preparations may not contain what is indicated on the label.

Widespread use of some products may lead to bloodstream infections in susceptible individuals, and careless use of S. boulardii in an intensive care setting may place other patients at risk.

At the present time, oral bacterial/yeast products do not have a role in the prevention or therapy of CDI.

PMID: 19699309 [PubMed - as supplied by publisher]


I find some of this information a bit disconcerting. [Frown]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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EyeBob
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I'm betting that you're seeing one of two docs in NE.

Here's the deal.

I agree with Tabers, of course, she and I saw the same doc for a while so we each know and appreciate his approach.

If you're really concerned about suppliments, ask the LLMD why he's not recommending them. His answer will go something like this....

He's done a lot of testing on you. None of your levels of Vit D, etc are in a dangerous place. If they were, he would supplement. He feels pretty strongly that some suppliments can directly interfere with your regimen, some are unknowns too. For more info, go to www.naturaldatabaseconsumer.com and pay for a subscription. It's an extensively researched adn updated drug/supplement interaction guide. You'll see that lots and lots of things interact with medicines to both reduce AND exaggerate the efficacy of drugs. He'll also say that if you supplement, he won't know what's helping or hurting; the drugs or the supplements. As far as probiotics go, I too supplemented. If you ask him he'll tell you that he's not sure that they help. If you get a yeast infection, you'll go on nystatin/fluconazole anyway.....just like everyone else here. One researcher even thinks that the probiotics that we take require the body to set up an immune response against them. Dunno if I understand that fully, but there's some merit to it.

Look, I understand where you're coming from. I've been there too. You see and read so much about supplements that you want to help yourself feel better and heal as quickly as possible. The doc that you're seeing (I'm assuming) will agree that some supplements will make you feel better. He's not ignorant. He's tried them before. I still go back-and-forth myself about the issue, and I've been seeing the guy for 2 years. Oh and I'm a whole lot better than when I started. I agree with Tabers, that to supplement while on an ABX break is a great idea, although your LLMD will probably disagree.

Have a good talk about this with your LLMD. You'll feel better. I think that soliciting advice from anonymous posters here is a good idea, but remember, some or many have little actual understanding of your docs protocol reasoning. In the end, you have to choose what you're most comfortable with. Either stick with it or bail and find someone else.

bt

Posts: 299 | From New Hampshire | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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