Sunday, January 11, 2009

Vitamins and Supplements

I have indicated in the past that I try to approach Lyme and associated infections from a conservative "allopathic" perspective. I am skeptical of supplements. I have treated many hundreds of patients and had much success without using supplements. So when I read: "Most LLMDs follow Dr. Burrascano's recommendations," because he is the "Man," I feel compelled to respond. My comments here should not be considered an attempt to disparage Dr. Burrascano or his beliefs. Rather, I am simply putting forth an alternative point of view.

I am concerned when the section on supplements recommends that patients buy a pill organizer just for Lyme related supplements. The implication that our bodies cannot heal without a plethora of artificial supplements runs counter to my clinical instincts. I believe that the body, given a reasonably balanced diet, is normally able to extract all the micro-nutrients it requires. Let me explain the distinction between micro-nutrients and macro-nutrients. Micro-nutrients, like vitamins, are molecules our body requires in trace amounts. They are co-factors, required by enzymes, which promote critical metabolic processes in our bodies. Macro-nutrients, on the other hand, are the major fuels and building blocks that our bodies require, including carbohydrates, proteins and fats. Plant derived vitamins are also called phytochemicals. It has been found that vitamins do not act alone. Our bodies have evolved so that a symphony of phytochemicals act in concert, to promote the metabolic processes required in our bodies. Several well documented studies with individual vitamins, such as vitamin C, vitamin E and beta-carotene have shown unexpected negative results, rather than beneficial ones. For example, for decades cardiologists promoted vitamin E as an anti-oxidant which was expected to block the deposit of oxidized cholesterol in arteries. When the study was done, no benefits were seen. Cardiologists no longer recommend this supplement. Two theories have been proposed for these findings: 1)Isolated vitamins, ingested outside the panoply of associated phytochemicals, are ineffective or harmful and 2) artificial vitamins do not act in the same way as natural, food derived vitamins.

Dr. Burrascano introduces the section on recommended vitamins and supplements by indicating that the benefits of some of the vitamins/supplements has been verified by controlled evidence based studies. What studies- which vitamins? If such data exists, its basis should be put forth, allowing readers the opportunity to make their own critical appraisals. The author's conclusions cannot be accepted blindly, especially when the issues are controversial, not to mention potentially very expensive. (I have not foot noted my references- but I am not making firm recommendations- I am only sharing my opinions). The reader should keep in mind that it is not necessary to prove a negative assertion, only a positive one.

Dr. Burrascano puts his reputation on a limb when the supplements are not suggested but rather "required."

Probiotics: Most physicians treating Lyme disease with long term antibiotics would strongly recommend these supplements. Many of us would not recommend specific brands. Many practicing physicians, including myself, would recommend that a brand of Sacchromyces be included, since this yeast based probiotic is not killed by the antibiotics.

Multivitamin: There is no evidence that this is helpful. I do not recommend it, neither do I discourage it.

Co-enzyme Q10: I do not routinely recommend this. It has been shown to be helpful for patients with disease of the heart muscle. It does help the mitochondria increase energy output in some cases. If there is a human study regarding this supplement and its benefits in cardiac Lyme, as suggested, then this information should be brought out. Q10 has been shown to be useful for diseased heart muscle from other medical illnesses. This does not prove that it is beneficial when the heart muscle is not diseased. For example, vitamin C is an essential supplement if someone has a deficiency disease called scurvy. This does not prove that a person without scurvy will accrue any benefits from taking extra vitamin C. Some patients feel that Q10 gives them extra energy. I do not discourage patients from experimenting with this on a case by case basis. It is not required.
My research shows that there is no basis for restricting the supplement while taking Mepron or Malarone.

Alpha Lippoic acid: I don't recommend. What evidence?

B vitamins: I only recommend if there is evidence of deficiency. Again, what are the clinical studies referred to.

Magnesium: It is documented to help with muscle cramps. It is depleted by diuretics.
In general I dot recommend it. There is no evidence to support its use.

Essential fatty acids: I recommend a diet high in fish, whole grains, nuts and seeds. If a proper diet cannot be followed there may be a scientific basis for these supplements. I do not consider their use routine or mandatory.

NT factor, Carnitine, SAM-e: No evidence- not recommended. SAM-e may help with depression. In Lyme patients depression may be modulated by poor frontal lobe function (SPECT scans), sensitivity to glutamine, fatigue and other specific neuro-chemical dysfunctions. Specific drugs may be recommended based on these known or suspected abnormalities.

Green tea? What is the evidence? The "hot topic" is coffee. It is reported to have beneficial effects in the brain and liver. There is some scientific evidence to promote these claims. This issue is of interest. It is not recommended or required.

Cordy Max and other herbal therapies: I confess complete ignorance- but I have helped patients without such things. Herbalists are specialists who have spent many years perfecting their art. I don't think that allopathic doctors should not casually recommend such things based on the unsupported recommendations of one practitioner. Patients who wish to pursue such alternative options should consult with a practitioner fully conversant with this discipline.

Glucosamine: Yes. It has been shown to work as an anti-inflammatory and reduce joint pain. In my experience, pharmaceutical anti-inflammatory medicines like Celebrex are much more effective. Other natural anti-inflammatories, such as Limbrel and Wobenzym may also have benefits. These supplements are only helpful for controlling symptoms.

Vitamin C: No. No evidence that it helps. It has been suggested by some (Donta) that it might interfere with Plaquenil, if this drug is being used.

Creatine: This is another mitochondria energy component. It may be helpful if weakness or muscle dysfunction is present. The comment about its benefits in ALS patients is evidence based. There is no evidence to support its routine use.

Milk thistle: I don't recommend. It has been thought by some to have beneficial effects in the liver. Coffee may work better.

Methyl B12: Very expensive. If vitamin B12 deficiency is present there are much more cost effective supplements. I do not use or recommend. Where is the evidence?

Vitamin D: Very controversial. I do not recommend it. Most Lyme patients, in my experience, have high levels of vitamin D dihydroxy 1,25, the active form. Vitamin D is not actually a vitamin, it is a hormone. It has active immunological effects. The issue is very complex and has been discussed elsewhere in this blog. My thoughts about it are in a state of flux. I plan on re-visiting this topic in the near future.

Let me re-iterate. I am not making this post to discredit, or belittle the recommendations of this well known pioneer in the field of Lyme medicine. I am raising questions and sharing my experiences and beliefs. I do feel that patients should be well informed about treatment options and make decisions based on knowledge rather than ignorance. Doctors are not "God." They do their best to make recommendations based on their evaluation of an unbelievably complex soup of information. I am concerned about many patients I have seen, who have left the offices of other physicians, having spent a fortune on a shopping bag full of supplements, without experiencing any clinical improvements. They have also not received the benefits of treatments which are steeped in the available scientific evidence and theory regarding this complex and frequently baffling syndrome of infection and illness.

23 comments:

bbatson said...

I have no arguement either way because hey.. what do i know.

My problem is this..I've been to dcos who haven't recommended any supplements. Now i'm at a what i would call a very very respected doctor and they say i need about 3/4 of the stuff on that list and it cost me about $600. NOW...

How do I go about telling them i don't need this stuff. I sort of questioned it when she said to take it, but i get the old "look if you want me to help you, you need to follow doctors orders" etc.

Basicly, most docs have a god complex. How do you think i should bring this up without , god forbid, questioning their superior knowledge?

Jill said...

Hi Doc- we spoke a while back via a lyme disease community and briefly discussed the herbal treatment recommended to me (but as it was and still stands today, I had only an equivocal test result from a junk lab for lyme, extremely positive for ebv, not tested for any co-infections, and was at that time in the middle of the first year postpartum)-- all of which may render my positive result unimportant to report. However, seeing a certified herbalist did, if nothing else, help with symptom relief. I took a very highly specialized prescription of herbs, and then was moved to a supplement regimen of a multi vitamin, SAMe and Omega 3 (which you may or may not want to address in regard to inflammation-- that one I personally feel was of the most help to me)

I am happy to report that if I did/do suffer from lyme disease the symptoms are abating at this time but not completely gone... I have good days and bad ones, but on the good ones I am much more like myself. I am still concerned and have a few general questions for you or anyone who feels he/she can help:

1. I am concerned for my daughter--she is being treated by one of the top pediatric cardiologists in the country for a condition described as the appearance of "swiss cheese" --multiple holes between the left and right atrium of the heart. They Don't know what has caused this-- don't know how to treat-- I have read colloquial accounts of lyme causing this in adults and in the womb. True or false? Should I be tested by IgeneX? Should she? Any recommendations or thoughts might help.

2. My husband tested positive for antibodies of lyme from a junk lab (<1.4) but his (not LL)MD says he is "asymptomatic" so they will not treat -- not even using the (rather useless) CDC guidlines. However, he owned a landscaping business, had may tick bites, and is VERY symptomatic--insomnia, weight gain, anxiety attacks, cognitive difficulties, ibs-type symptoms, arthritis-type symptoms, etc. Any thoughts on where to go next? Who can we go to for another opinion? Is lyme an std? What about the related co-infections?

3. My remaining symptoms are around my ear and sinus area-- very hard to describe headache- type episodes-- sound distortion (sounds are too loud in the left, muffled in the right) a sore spot behind my ear that feels like bruise when pushed on. I had an MRI of my brian--everything looks fine--so can this be lyme?


goodness- this is really long and not all related to your post--sorry!! Please remove and request email if this is an inappropriate place to ask these things and you are able to help!

I meant to write you in the summer and say thank you for your interest and advice then--your patients are very lucky to have you!

david said...

LymeMD,
I apologize if you already received this, I cannot find where I posted earlier, this is all new to me. I am from Raleigh and my wife(53) was diagnosed with lyme about 6 months ago and has taken doxy orally for 3 sessions with little improvement. I am considering buying a rife machine or going to jemsek, as he is the "man" in our area I guess. Any advice, her main symptomis extreme debilitating fatigue and she has not had much improvement. David

Claire said...
This comment has been removed by the author.
Claire said...

The first LLMD I took my daughter to see put my daughter on about 30 supplements. They did nothing- except give her a stomach ache.

Due to lack of progress, we changed LLMDs, our current LLMD believes the same as you do- supplements are not necessary, except for Probioitcs of course. She's improving under this LLMDs care.

I agree that the Burrascano guidelines should NOT be the "final word"..he cites no studies/sources at all in his guidelines, which does put his reputation (and ours) on the line.


David- take your wife to Dr. Jemsek or another ILADS-trained LLMD.

girl mark said...

David, I'm from Raleigh- there's an LLMD in our area, check out the North Carolina Lyme yahoogroup to get more info on who that is. My roommate had a very good experience with him and from everything I can tell, the doctor seems to follow pretty standard (if there is such a thing) LLMD practices.

You can probably find his clinic by some searches for Raleigh and Lyme- I think the LLMD's website mentions Lyme, and he's been quoted in the paper in the past.

Most online Lyme websites have a protocol of not mentioning doctors names, which is why I'm putting you through such hoops.

Chronic Triathlete said...

I agree with the doctor on the subject of our bodies normally being able to extract all of the micro and macro nutrients it needs. However, what about those of us who have been on many many months of oral antibiotics?

My LLMD (a well respected guy in NYC) is convinced that my progress is stalled due to absorption issues (been on oral abx for 9 months). Though I take probiotics it seems that they are not enough to replenish what the abx are killing off.

Would it make sense for those of us in this situation to supplement the basic vitamins/minerals.

Thanks.
/CT

bitten said...

I'm so glad you put this up. I read that section also and even took it to Whole Foods, a good store, where they have almost all those items and many people have been there with this list so I guess they are making money.

First, I was overwhelmed and got frustrated. I decided to just take a look at the "required ones" I saw that just four of these would cost me $150.00 and I would have to buy them monthly. However, thinking that four "required" from "the man" wasn't so bad that I would try them once so I bought them. I took them and two hours later threw up.

After braving the supplement section I had lost patients and could not face the food list. Its not really a list as it gives about three things you can have then says ect. What is that? I can't buy ect and maybe I'm just too dumb to figure it out.

My dear daughter knows when I have reached my limit so she tried in vain to help me because she desperately wants to see me get better but she gave up saying "This is not a normal grocery store and I can't find anything that I would eat here" "I can't follow this list" (except the protein part and decaf coffee)Whole Foods is a good place but not for a teenager and I don't think for me. I said thanks for trying. No one can be expected to decipher this and it was a dirty trick to give it to her.

So there is little food to eat here but I still have my Columbian cafinated coffee so I will survive!

bitten said...

bbatson: I have a recommendation for you. I once had a doc that used antibiotics but had all those supplements and IV vitimins set up in his office.

Tell your doc you just cannot afford them. That was the truth with me (I knew nothing then)
I got a good multivitimin and some liquid vitimin (one) that I was deficient in and told him that I would try that. If you can't afford to eat and lose the roof over your head buying these supplements I don't think you will get well.

Just say "I cannot afford these" Period. Don't take their "Well you want to get well" or "don't you have family that can help" If they are irritated and tell you that is why you are not getting well as many well known ones do then leave or leave now. I see it coming. Hang in there and keep your money in the bank or at home.

dogdoc said...

For what its worth, we tried Dr B's list of supplements- no effect other than loss of $$.

jenbooks13 said...

Well I don't know if I should weigh in here but what the heck. Sorry I will probably write too long a post but this addresses concerns of mine.

If I went to a doctor who wanted me to take $600 of supplements, especiallly if he branded them himself, I'd say no, and I'd probably also say I'm too broke as the least offensive excuse. If he wanted me to buy them online, I'd do research myself to decide if any of them seemed necessary.

I'm not a big believer in "oral" vitamin supplements. Especially multivitamins. Mostly because they're artificial, not in the form nature made them, make assumptions about what I might need that are probably false because not individualized, may not be absorbed well, etc. In addition they may be contaminated, increasingly a danger. Most Vitamin C is made in China--do we trust their plants? An article I read last week found that they will periodically shut off their water filtering system to save money, and continue making the Vitamin C anyway. As for glucosamine sulphate, it is also made in China, sometimes made in machines in the morning where they make fertilizer in the afternoon--without cleaning the machines. Fuggadabout it!!

But there are some caveats:

1) You have to do your best to eat organic *and* locally grown farmer food. Michael Pollan's Omnivore's Dilemma is a good book in this regard. Industrial agriculture has wrecked our food supply and thus we don't get nearly the value out of it that, say, our grandparents or great-grandparents did out of theirs. So if you think you're giving your body the food it needs to heal and you're eating a standard american diet and shopping at Pathmark, you are simply not getting what you need. Foods are grown in depleted soils, picked before ripe and ripened in false conditions; animals are kept in horrible conditions, fed poor quality feed that often isn't natural to them (cows like hay, not corn, and the fatty acid profile of the meat of an industrial-ag cow is completely inappropriate for us). Cows are milked while pregnant--to maximize profits, and thus the hormones in most commercial dairy are excessively high). Prepared foods, from breads, to nut butters, to cheeses, to pasta sauce to you name it, all have excess amounts of sugar and salt, neither of which is good for us, and simply is a cheap way to make it "taste" good.

There was an article recently on the fact that chicken farms in one of the states release so much toxic ammonia its a hazardous pollutant that is going to need to be regulated. Apparently humans have to wear filtering masks to even go into a standard chicken coop so *they* don't get sick. Well if the air is sick the chickens must be pretty sick, too. Not to mention they're fed arsenic to fatten them up, and when being processed are dipped in a sodium-phosphate solution to plump them up and maximize profits--leading to high sodium levels that a person on a low-salt diet has no clue about.

Local farmers are the most trustworthy so use your greenmarkets liberally in spring, summer and fall. Organic produce is somewhat industrialized now, too, but its better than supermarket produce.

Now, I will add that IV nutrition, a Meyer's Cocktail push, and IV glutathione, does a lot for me. The Meyer's Cocktail push, David Katz at Yale has already published studies indicating its effectiveness in fibromyalgia among other conditions. He has another NIH sponsored study on this and is probably analyzing data now.

Glutathione is really important for some of us. There are enough pubmed studies to indicate that both lyme and babesia oxidize glutathione. And there is enough good evidence that its neuroprotective (in fact, gene therapy scientists recently doubled lifespan in an ALS-mouse model by causing astrocytes to put out much more glutathione than normal).

It really helps me, is all I can say. We all have genetic polymorphisms. Some of us are going to need additional help under stress.

jmb said...

it is hard. if you have access to the google machine, you can read the guidelines and you want to do all you can to avoid a chronic condition.

i started with all Dr. B's required supplements. i divided them up in little baggies a week in advance. i was ordering once a week. i was fatigued; was it the Bb or from all the time i spent on the supps! i am kidding but not.

i wish it could be simple: you take this and you will have the best chance for success. i will spend the dollars - i will spend them all to be well. then i read and read and read, and the D debate makes me realize that THE answer is unclear. I congratulate LymeMD for the courage to acknowledge the alternative hypothesis on supps.

i guess we will see. last week i decided that i think i am on the road to better health after 9 months.

Chronic, it's bridgework. Haven't heard from you in a while hope you are well.

bitten said...

Maybe its just me but most of us average Americans raising kids and working DON'T have the $$ for this kind of thing. I you are wealthy then try it. some seem to be able to afford everything out there because I know how much these "elite" treatments cost. I'm a working single mom. I have a good job- until they fire me- but heck, as kids get older they get more expensive. I'd like to retire some day. I don't see that possibility now. College tuition, even with scholarships is very expensive. How do you guys do it? Personally, it was not a lie when I told the doc but then you see I bought- what, only two- of the "required" supplements because of the doc recommending them. One mistake and I won't be homeless over it. I won't make it again.

IF WE HAD HELP FROM THE ENTIRE MEDICAL COMMUNITY WE COULD SOLVE THIS AND THIS ISSUE WOULD GO AWAY.

lymie said...

Some of us have had testing to document the necessity of taking certain supplements, like zinc and B vitamins for instance.

Also, many lyme patients find that magnesium helps with cramps. If I did not take mg several times a day, my life would be miserable, especially at night.

Seems like the ability of a well person with normal digestion to get all the nutrition they need from food might be different from people with chronic diseases.

gimpy said...

Buying supplements from Whole Foods certainly gets expensive. Online sources like vitacost.com are much cheaper, and often ti's the same exact brands.

clem said...

CoQ10 isn't just for heart health. Our Lyme neurologist wants us to supplement at higher doses to help protect the brain and nerves.

Biol Signals Recept. 2001 May-Aug;10(3-4):224-53

Staris said...

Clem - how did you find a LL Neurologist and where are your?

bitten said...

I don't think there is any question or controversy about taking supplements or vitimins you are low in. I take B12,iron and at times I use liquid magnesium. Usually when headaches are severe. I've used "cats claw" I know it helps some.

This is an example of what LymeMD is talking about: I went over to my friends place here. She also now sees LymeMD. I was shocked looking at her kitchen counter and it takes a lot to shock me. It was literally covered with supplements that she had bought on the recommendation of last physician some from his office some from internet. She said trying to take them she just felt like she had a huge mass in her stomach that would not disolve. They did not help so she quit.

Docs should be very selective and not just as a patient to take literally a list of supplement. Like western medicine it should be individualized. I don't think anyone argues with moderation.

bjb0082 said...

Interesting that I am reading this which actually confirms what I was suspicious about. The LLMD that I went to out of state put me on about $350.00 of vitamins and supplements which by the way I had to order through her, and only a very small amount of antibiotics. She prescribed me 100mg of minocycline 1x every other day and 600mg azithromycin 1 x every other day. I asked her about it and her response was that it was to reduce a herx affect and so I can stay on the antibiotics longer. Some of the vitamins she has me on arent even mentioned in Burrascano handbook. A vitamin called Boluoke, which I can only order through her and cost me $92.00 each and ALAmax CR, for my supposed nerve damage. I didn't suffer a herx affect nor do I feel any different either. I've been on the treatment for over a month now. I'm thinking about switching LLMD's, what do you think?

Anthony Murawski said...

Speaking of anti-inflammatories...

A few years ago, before I was diagnosed with Lyme disease, I learned of a very encouraging small-scale clinical trial of subanesthetic ketamine for treatment-resistant depression. The results were pretty amazing::

1 day after IV infusion (0.5 mg/kg over 40 minutes):

71% (12 of 17) met response criteria (50% or greater reduction in symptoms)

29% (5 of 17) met remission criteria

1 week after infusion:

35% (6 of 17) maintained response (not clear whether response criteria or remission criteria)

2 weeks after infusion:

12% (2 of 17) maintained response

Those results have been duplicated in other small-scale clinical trials.

Clinical trials have also shown subanesthetic dosing of ketamine to be very effective at treating symptoms of complex regional pain syndrome. CRPS is one of those conditions that is misdiagnosed for Lyme disease.

I hadn't researched ketamine recently, but I checked the other day out of curiosity whether ketamine has anti-inflammatory properties. As it turns out, ketamine is a potent anti-inflammatory that crosses the blood-brain barrier and has been shown in human studies to increase cerebral perfusion.

According to a recent Yale study, subanesthetic dosing appears to be safe. No serious adverse events were reported in about 500 people who have taken subanesthetic doses. There are some mild but transient (1 to 2 hour) psychiatric effects in a small percentage of patients.

According to Drug Facts & Comparisons, "Ketamine hydrochloride is rapidly absorbed following parenteral aministration. Animal experiments indicated that ketamine hydrochloride was rapidly distributed into body tissues, with relatively high concentrations appearing in body fat, liver, lung, and brain; lower concentrations were found in the heart, skeletal muscle, and blood plasma. Placental transfer of the drug was found to occur in pregnant dogs and monkeys. No significant degree of binding to serum albumin was found with ketamine hydrochloride."

I think this drug might prove to be a big breakthrough in alleviating symptoms of neuroborreliosis and making antibiotic treatment more tolerable.

Ketamine could also be taken by nebulizer.

If anyone wants copies of studies, send an e-mail to anthony(at sign)murawski-law.com.

Anthony Murawski said...

I should have said that clinical trials have shown anesthetic dosing of ketamine to be highly effective at alleviating symptoms of CRPS. Here is data from a recent open-label phase II study:

Twenty ASA I-III patients suffering from refractory CRPS received ketamine in anesthetic dosage over 5 days. Outcome criteria were pain relief, effect on the movement disorder, quality of life, and ability to work at baseline and up to 6 months following treatment.

Results. Significant pain relief was observed at 1, 3, and 6 months following treatment (93.5 11.1%, 89.4 17.0%, 79.3 25.3%; P < 0.001). Complete remission from CRPS was observed at 1 month in all patients, at 3 months in 17, and at 6 months in 16 patients. If relapse occurred, significant pain relief was still attained at 3 and 6 months (59.0 14.7%, P < 0.004; 50.2 10.6%, P < 0.002). Quality of life, the associated movement disorder, and the ability to work significantly improved in the majority of patients at 3 and 6 months.

Anthony Murawski said...

Some studies of subanesthetic dosing for refractory CRPS have shown significant results. One recent study showed no effect. I haven't yet compared the dosing in the studies.

Anthony

Anthony Murawski said...

I've also found studies showing ketamine is effective for fibromyalgia symptoms.

I'm now researching the immuno-suppressive properties of ketamine. I'm hoping that it's suitable for Lyme symptom management, unlike steroids.

--Anthony