LymeMD on Vitamins & Supplements

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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Claudia
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LymeMD on Vitamins & Supplements

Post by Claudia » Mon 12 Jan 2009 15:05

I debated whether this topic belongs in the Unconventional forum rather than here in Medical. I decided to put it in Medical because of the all the hype in LymeLand, the perscribing of these by so many so-called "llmds," and the additional "requirement" for these in Burrascano's new, updated guidelines.

LymeMD's blog provides another viewpoint on this topic (much of which has been previously discussed on LNE). It is, in my opinion, a much needed and interesting posting -- along with the comments that it is generating there on his blog:
LymeMD wrote:

Vitamins and Supplements Sunday, January 11, 2009

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.

http://lymemd.blogspot.com/2009/01/vita ... ments.html

newlylymie
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Re: LymeMD on Vitamins & Supplements

Post by newlylymie » Mon 12 Jan 2009 18:24

Claudia,

Thanks for posting this. What he says certainly makes a lot of sense. I'm always trying to figure out what the best supplements are for me. Still experimenting.
Last edited by newlylymie on Mon 12 Jan 2009 22:19, edited 1 time in total.

OneGuest
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Re: LymeMD on Vitamins & Supplements

Post by OneGuest » Mon 12 Jan 2009 18:48

I tend to agree that vitamins and supplements can be considered medical, since
their are medical conditions that result from deficiencies or are related to
deficiencies.

I only have time to start with one, B12

There are numerous studies on its use in medical conditions, from ms to diabetes
(do a search on diabetic neuropathy), aside from depletion conditions. The body uses
it in methylation cycles (need to have homocysteine levels checked....but needs folate/folic
acid, and maybe some other things to work), along with neural/myelin formation.

One problem some drs. may have is using/recommending it as a prophylactic.
Another problem is length of time for use.
Another problem is safety, effect when used as a monotherapy, vs. use with full B (all forms) supplement.
Another problem is form of taking it: IV, oral/swallow, oral/sublingual,
Another problem is form of B-12: cyanocobolamin vs. methylcobolamin
Another problem is measuring levels.



B-12: (only time for one now, will add; there are tons of articles on b12)

http://www.ncbi.nlm.nih.gov/pubmed/1672 ... d_RVDocSum

Iron and the folate-vitamin
B12-methylation pathway in multiple sclerosis.
van Rensburg SJ, Kotze MJ, Hon D, Haug P, Kuyler J, Hendricks M, Botha J, Potocnik FC, Matsha T, Erasmus RT.

Chemical Pathology, National Health Laboratory Service and the University of Stellenbosch, Tygerberg Hospital, PO Box 19113, 7505 Tygerberg, South Africa. sjvr@sun.ac.za

Some subjects with multiple sclerosis (MS) present with low blood iron parameters. Anecdotal reports and a single patient study suggest that iron supplementation may be beneficial in these subjects.

Myelin is regenerated continually, but prerequisites for this process are iron and a functional folate-vitamin B12-methylation pathway.

The aim of this study was to determine iron status, folate and homocysteine in MS subjects, and to evaluate the effect on MS symptoms if deficiencies were addressed.

Results: In relapsing-remitting MS subjects, serum iron concentration correlated significantly with age at diagnosis (r=0.49; p=0.008). In Caucasian female MS subjects, serum iron and ferritin concentrations were significantly lower than in matched controls.

In a 6-month pilot study, 12 subjects taking a regimen of nutritional supplements designed to promote myelin regeneration, improved significantly neurologically as measured by the Kurzke EDSS (Total Score means 3.50 to 2.45, 29.9%; p=0.021).

These were significantly improved (p=0.002) compared to 6 control group patients taking multivitamins (Kurzke Score increased by 13.9% from 4.83 to 5.50).

Both groups had significantly reduced homocysteine concentrations at 6 months, suggesting that methylation is necessary but not sufficient for myelin regeneration.

PMID: 16729250 [PubMed - indexed for MEDLINE]

(another component of myelin regeneration are the lipids...that falls under the area of omega's)

OG

Seibertneurolyme
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Re: LymeMD on Vitamins & Supplements

Post by Seibertneurolyme » Mon 12 Jan 2009 22:11

I will save my long post for the blog. The short version is that without nutritional supplements I think hubby would have been either locked up permanently in a psych ward or dead long ago.

Some people such as hubby who have major G.I. problems absolutely need nutritional supplements to function. One of his first tickborne symptoms was gastritis. This has been an on again off again problem for 8 years -- allopathic meds have been of no benefit -- many actually caused additional side effects on top of the real problems. Only herbs and supplements have been helpful.

Talked to hubby this morning and he is pretty much in agreement with me that we may simply forego more antibiotics and go the herbal and nutritional route once we have an ID on the Clongen mystery bug.

I personally think that the reason hubby has not had the severe cognitive effects and nerve pain that many other long term Lymies experience is due to his supplementation. He has major central nervous system involvement and has had tests which indicate antibiodies to myelin and neurofilament -- but I feel the supplements have kept the nerves from deteriorating further.

Unfortunately the supplements are expensive and many docs do not know which tests to order to prove deficiences. Hubby has stopped his supplements 3 or 4 times during the last 8 years -- always ends up in a bad place -- the ER or hospital. I have to rotate his supplements as we can't afford to supplement at the level I feel he needs to be at on everything. Some supplements he can obviously notice a difference on and others it is more a subtle overall effect.

If you can get well without supplements then you are one of the lucky ones, but I personally feel that the longer you have been ill the more likely supplements will help.

Bea Seibert

newlylymie
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Re: LymeMD on Vitamins & Supplements

Post by newlylymie » Mon 12 Jan 2009 22:16

Hi Bea,

It's good to hear another viewpoint. If you don't mind me asking, what supplements do you think benefited your husband most? Thanks!

OneGuest
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Re: LymeMD on Vitamins & Supplements

Post by OneGuest » Mon 12 Jan 2009 22:55

Regarding alpha lipoic acid, in neuropathy:

http://www.ncbi.nlm.nih.gov/pubmed/10595592

Exp Clin Endocrinol Diabetes. 1999;107(7):421-30.Links
Alpha-lipoic acid in the treatment of diabetic polyneuropathy in Germany: current evidence from clinical trials.
Ziegler D, Reljanovic M, Mehnert H, Gries FA.


Diabetes-Forschungsinstitut an der Heinrich-Heine-Universität, Düsseldorf, Germany. dan.ziegler@dfi.uni-duesseldorf.de
Diabetic neuropathy represents a major health problem, as it is responsible for substantial morbidity, increased mortality, and impaired quality of life. Near-normoglycaemia is now generally accepted as the primary approach to prevention of diabetic neuropathy, but is not achievable in a considerable number of patients.

In the past two decades several medical treatments that exert their effects despite hyperglycaemia have been derived from the experimental pathogenetic concepts of diabetic neuropathy.

Such compounds have been designed to improve or slow the progression of the neuropathic process and are being evaluated in clinical trials, but with the exception of alpha-lipoic acid (thioctic acid) which is available in Germany, none of these drugs is currently available in clinical practice.

Here we review the current evidence from the clinical trials that assessed the therapeutic efficacy and safety of thioctic acid in diabetic polyneuropathy.

Thus far, 15 clinical trials have been completed using different study designs, durations of treatment, doses, sample sizes, and patient populations. Within this variety of clinical trials, those with beneficial effects of thioctic acid on either neuropathic symptoms and deficits due to polyneuropathy or reduced heart rate variability resulting from cardiac autonomic neuropathy used doses of at least 600 mg per day.

The following conclusions can be drawn from the recent controlled clinical trials.
1.) Short-term treatment for 3 weeks using 600 mg of thioctic acid i.v. per day appears to reduce the chief symptoms of diabetic polyneuropathy. A 3-week pilot study of 1800 mg per day given orally indicates that the therapeutic effect may be independent of the route of administration, but this needs to be confirmed in a larger sample size.

2.) The effect on symptoms is accompanied by an improvement of neuropathic deficits.

3.) Oral treatment for 4-7 months tends to reduce neuropathic deficits and improves cardiac autonomic neuropathy.

4.) Preliminary data over 2 years indicate possible long-term improvement in motor and sensory nerve conduction in the lower limbs.

5.) Clinical and postmarketing surveillance studies have revealed a highly favourable safety profile of the drug.

Based on these findings, a pivotal long-term multicenter trial of oral treatment with thioctic acid (NATHAN I Study) is being conducted in North America and Europe aimed at slowing the progression of diabetic polyneuropathy using a clinically meaningful and reliable primary outcome measure that combines clinical and neurophysiological assessment.

PMID: 10595592 [PubMed - indexed for MEDLINE]
(At the url, there are links to the following articles:)



Related Articles

* ReviewThioctic acid for patients with symptomatic diabetic polyneuropathy: a critical review. [Treat Endocrinol. 2004]
* Treatment of symptomatic diabetic polyneuropathy with the antioxidant alpha-lipoic acid: a 7-month multicenter randomized controlled trial (ALADIN III Study). ALADIN III Study Group. Alpha-Lipoic Acid in Diabetic Neuropathy. [Diabetes Care. 1999]
* Treatment of symptomatic diabetic polyneuropathy with the antioxidant alpha-lipoic acid: a meta-analysis. [Diabet Med. 2004]
* Clinical experience with thioctacid (thioctic acid) in the treatment of distal symmetric polyneuropathy in Korean diabetic patients. [J Diabetes Complications. 2004]
* ReviewClinical trials for drugs against diabetic neuropathy: can we combine scientific needs with clinical practicalities? [Int Rev Neurobiol. 2002]

» See Reviews... | » See All...
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Alpha-lipoic acid in the treatment of diabetic polyneuropathy in Germany: current evidence...Alpha-lipoic acid in the treatment of diabetic polyneuropathy in Germany: current evidence from clinical trials.
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Iron and the folate-vitamin B12-methylation pathway in multiple sclerosis.Iron and the folate-vitamin B12-methylation pathway in multiple sclerosis.
*
Effects of nutrients (in food) on the structure and function of the nervous system: update...Effects of nutrients (in food) on the structure and function of the nervous system: update on dietary requirements for brain. Part 1: micronutrients.
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vitamin b12 myelin(69)

OneGuest
Posts: 300
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Re: LymeMD on Vitamins & Supplements

Post by OneGuest » Mon 12 Jan 2009 23:09

Regarding folate (which is a b vitamin, and deficits affect homocysteine levels):
(I am using references that are associated with symptoms of tick borne disease, since
it is highly unlikely that nutritional supplement studies with tick borne diseases
are available!)

Most of these journals are not the mainstream type, though......

http://www.ncbi.nlm.nih.gov/pubmed/1760 ... rom=pubmed
Altern Med Rev. 2007 Jun;12(2):101-12.Click here to read Links
Restless legs syndrome: pathophysiology and the role of iron and folate.
Restless Legs Syndrome (RLS) is a common movement disorder characterized by a circadian variation in symptoms involving an urge to move the limbs, usually the legs. Pregnant women, patients with end-stage renal disease or iron-deficiency anemia, and children with attention deficit hyperactivity disorder (AD/HD) have a significantly higher prevalence of RLS. The classic presentation includes the onset or worsening of symptoms when at rest and the circadian pattern of exacerbation of symptoms at night. These symptoms reflect a circadian fluctuation of dopamine in the substantia nigra. Patients with RLS have lower levels of dopamine in the substantia nigra and respond to iron administration. Iron, as a cofactor in dopamine production, plays a central role in the etiology of RLS. Folic acid administration has also been shown to alleviate the symptoms of RLS and may play a role in the treatment of primary (familial) RLS.

PMID: 17604457 [PubMed - indexed for MEDLINE]

Related Articles

* ReviewRestless legs syndrome in 2004. [Prague Med Rep. 2004]
* ReviewRestless legs syndrome: a clinical update. [Chest. 2006]
* Association between low serum ferritin and restless legs syndrome in patients with attention deficit hyperactivity disorder. [Tohoku J Exp Med. 2007]
* Review[Restless-legs syndrome] [Rev Neurol (Paris). 2008]
* Impact of restless legs syndrome and iron deficiency on attention-deficit/hyperactivity disorder in children. [Sleep Med. 2007]

OneGuest
Posts: 300
Joined: Wed 21 Nov 2007 4:08

Re: LymeMD on Vitamins & Supplements

Post by OneGuest » Mon 12 Jan 2009 23:20

b 12 and folate:
http://www.ncbi.nlm.nih.gov/pubmed/1551 ... d_RVDocSum
Semin Ophthalmol. 2002 Mar;17(1):29-32.Click here to read Links
Metabolic optic neuropathies.
Sadun AA.

Department of Ophthalmology, Doheny Eye Institute, University of Southern California, 1450 San Pablo Street, Los Angeles, CA 90033, USA. asadun@hsc.usc.edu

Metabolic optic neuropathies form a rubric of disease characterized by bilaterally symmetrical visual impairment with loss of central visual acuity, dyschromatopsia, centrocecal visual field defects, temporal optic disc atrophy, and specific loss of the nerve fiber layer in the papillomacular bundle.

The three subcategories of metabolic optic neuropathies are

heredodegenerative (such as Leber's hereditary optic neuropathy),

nutritional deficiencies (such as vitamins B12 or folic acid),

or toxicities (such as ethambutol or cyanide).

It's interesting to note that the first of these three is a congenital cause of mitochondrial impairment, whereas the latter two are acquired injuries to mitochondria.

Hence, most if not all causes of metabolic optic neuropathies are, in fact, related to mitochondrial impairment. At the present time there is no effective treatment for heredodegenerative optic neuropathy.

Nutritional deficiency metabolic optic neuropathies are treated by giving supplements of the appropriate nutrient or vitamin, whereas toxic metabolic optic neuropathies are treated by removing or preventing exposure to the toxin in question.

PMID: 15513453 [PubMed - indexed for MEDLINE]

Claudia
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Re: LymeMD on Vitamins & Supplements

Post by Claudia » Thu 15 Jan 2009 20:59

I really wish I could get all the money we spent on vitamins and supplements during Lyme disease treatment back, which averaged about $150 per month on only a few products. When I see how many different things, and how much money some people are spending on these, I guess we got off easy.

The vitamins and supplements that I bought were not recommended or encouraged by our treating "llmd" physicians: I got caught up in all the hype and testimonials on a Lyme disease forum, which is what led me to purchase them without doing a whole lot of meaningful research.

In our case, I don't think they made any difference towards helping recovery or symptoms, just turned the urine unnatural shades of bright, glowing yellow. In hind sight, the only two things I would buy now would be probiotics for regular use, and a fiber supplement for occasional use when needed.

I also wonder if adding in all these other chemicals to be broken down and processed out by the body, on top of those in the pharmaceuticals, is just adding additional stress on an already stressed liver? A risk that's being taken without much real evidence in supporting their benefit and use in Lyme disease.

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LymeEnigma
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Re: LymeMD on Vitamins & Supplements

Post by LymeEnigma » Fri 16 Jan 2009 3:19

My opinion of this guy continues to flip-flop ... although he reminds me a lot of myself, where refusal to adhere to one camp is concerned.

I cringe when I read about how much money people spend/have spent on supplements. I cringe when I think about how much money I could have spent on them, had I taken my ex-LLMD's advice as gospel....

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