How important is vitamin B12?
For years doctors gave patients injections of that red liquid in their hips for low energy.
Patients left the office feeling energized with an increased sense of well being.
The practice has been eschewed by conscientious doctors in more recent decades: no scientific rationale - just a placebo effect. The elixir is red - red placebos work best. In evidence based medicine, B12 deficiency may be due to maladsorption or an autoimmune disorder. Blood levels are only low when less than 211. Other countries, including Japan have set the bar for normalcy higher - 500 or more. This is quite a difference.
B12 does many things in the body -- in conjunction with folic acid. It helps regulate the production of red blood cells and DNA synthesis. It facilitates the synthesis of myelin, the protective covering around nerves, and it likely has many other functions which are enumerated in a variety of published sources.
Lower B12 levels, less than 500 have been associated with a variety of neuro-psychiatric disorders, inclusive of cognitive dysfunction. B12 supplementation has helped with neuropathies of various sorts despite normal blood levels according to American standards. Neurologists who discount Lyme as a possible cause of peripheral neuropathy readily recommend generous supplementation with B vitamins.
Commercially, B12 is available as cyanocobalamin, an inactive form. It must be converted into one of two active forms, including methylcobalamine. Many clinicians feel that that the expensive methylcobalamine is the only clinically effective form of the vitamin. Based on my survey of the literature the jury is out on this one.
Patients with neuropathy, cognitive issues and perhaps many other issues may benefit from supplementation. Most of my patients have B12 levels which average around 350. This water soluble vitamin has no toxicity. B12 must be given with folic acid. If oral supplementation is ineffective the old "placebo" (B12 shots) can't hurt.
Good to hear from you again,
we, "Lymies"are making
"MAY, LYME AWARENESS MONTH",
please all join with a green ribbon,
or shirt or hair or anything; and let the people know about this severe disease!
Thank you all!
B12 it is!
Your northern California contingent of fans welcomes you back, LMD!
B12 supplementation is probably also important for the huge cohort of the population that lives on PPIs for GERD.
Ooh- I'm about to start supplementing with B12 again- I've done it on and off for a while. I'm also on Mepron. I was trying to research whether folic acid supplementation is contraindicated if you're on Mepron. Any thoughts?
Also, methylcobalamin isn't all that expensive if you get it by the vial, rather than pre-filled shots. Mine is something like $35-50 (can't remember) for over a months' worth from McGuff Compounding.
Studies in Norway reproduce Borrelias in Cystic forms? http://www.ncbi.nlm.nih.gov/pubmed/10052721
Dr. BRORSON states "It is shown that Borrelia can form cysts when exposed to pencillin or doksysyklin in concentrations corresponding to the MIC (minimal inhibitory concentration). " ...? mm? His studies seems to conclude that Hydroxicloroquin and Metronidazole are best to kill the Borrelia! Some say Norways "has the cure"...?? Hope so!
Maria, I'm pretty sure that it's just CoQ10 that is contraindicated while on Mepron for Bab.
Laura, many of us use tinidazole to kill/destroy cyst forms. Does what Flagyl does with perhaps some advantages.
Off topic ... Are low Globulin levels common for chronic Lyme? Are Gamma Globulin injections recommended in such a case?
This is Hannah Bevills, I am an editor with Hospital.com. We are a medical publication whose focus is geared towards promoting awareness on hospitals, including information, news, and reviews on them. Given the relevance of what you are offering from your site and what our mission is, I feel we may be able to collaborate in some way or another, I look forward to your response regarding the matter. Thanks!
I am also interersted in your thoughts on low levels (say, under 400) of immunoglobulin G and lyme disease. Do you think the levels will return to normal after the lyme is gone or under control? Or does lyme destroy the bodies ability to make antibodies and IVIG therapy will have to be life long?
BLUESDOC it seems that Norway is not under the umbrella of IDSA!
And yes Tinidazol or Tindamax vs Flagyl could be a good point, but, have you tried IVERMECTIN? drops? Not the Stomectol, three pills, but one drop per KILOGRAM of weight every seven days??? This means from being bedridden to going back to work; mean from feeling some what better to start real recovery!!!! LOL
First post but not my new to the disease. I have been seeing a LLMD for about a year now and am just looking for some more insight. I have been treated for Babesia with the Mepron protocol. Also I was on B12 shots for energy which did not work and maybe because it is the in-active form of B-12. Now I am currently being treated for Bartonella with Cipro, Bactrim, M-cyclin, and Art.. My main concern is my muscle pain and stiffness in neck, knees and heel pain. Also feeling like I should sleep all day at the age of 24 gets old. Just looking for some hope and maybe I can give some insight as well.
LymeLaura, I am interested in the Ivermectin drops and where you get them or if my doctor would have to write a prescription. I looked it up online and it basically says it only available by prescription for animals. Also do you know if you can buy the B12 the LLMD is talking about on the internet or do you have to have prescription for that as well.
If you have answers please email me at email@example.com
I see a different LLMD who handles his 'compounding pharmacy' prescriptions via McGuff Compounding Pharmacy in California, which is pretty well known nationally. They will ship to you.
It's about $40 for multi-use vials (something like a months' worth for me at my dosage) of methylcobalamin (syringes are cheap at your local pharmacy).
I think that at some other pharmacies, the cost for pre-filled syringes of methylcobalamin in the same dosage were more like $200/month.
You do need a prescription for injectible B12. There are non-prescription oral forms that are thought to not work very well.
here's the pharmacy contact info: http://www.mcguffpharmacy.com/
Does this seem to help you and I see my lyme doctor very soon and I will ask him for a prescription. I just feel like I should sleep all the time I was thinking about going to the doc to see if I could be treated for narcolepsy.I still may but I will ask about those specific B12 shots. Also do you know what LymeLaura was talking about when she mentioned IVERMECTIN drops?
Thank you for the response
Hello all, so I like many of you have been diagnosed with Lyme but I have had symptoms for over a decade, When lived in MI, I was diagnosed with bell palsey, about 2 years later I began having severe bouts of tachycardia, later in college I had MANY memory and concentration issues. I became so angry all the time that I had to see a psychaiatris, I felt and fell tired all the timeI would get terrible headaches, still do. and too boot have osteoarthritis. I am 34 years old, and the doc says I have recently been exposed because I have IgG +1, IgM +2. I am very new to this diagnosis, but in reading all of your post, I should be a poster child. Can I have really been living with this for years or am I just connecting the wrong dots. My doc just started me on a regimin of doxy, for 30 days, and fear that it might not be aggressive enough, I can't remeber the last time that I really felt good, I just got used to feeling the way I feel and chucked it off to my age and being a mom. Im so glad that I found this blog, to vent to people in my same situation.
We can tell it is lyme season because you have slowed down the posting. It must be busy in MD right now!
RNFL, many people with late lyme tend to do much better when given multiple high dose antibiotics at once. (Read Ginger Savely's chapter in the Insights book. Herxing can be very difficult, but those are the dues it takes to get to the other end of this. A month of doxy (assuming it's at least 400mg/d) is just an appetizer, though your response to it will help reinforce the diagnosis. To get well, expect to be on abx for many months, to years. If you get well sooner, that's great. But don't expect it. It's not a sprint, but a very long marathon. And yes, you can have this for a very long time before getting diagnosed. I was about 16 yrs into it (undiagnosed, and I'm a frickin' doc!!) when I completely fell apart. Now, after nearly 4 yrs of totally inadequate treatment (what I didn't realize and my lyme doc grossly underestimated), I'm getting well on mult abx, high dose (basically an ILADS/Burrascano approach). Everyone is different and that's why you need a real lyme doc to help steer the course. And, assuming you live in the northern hemisphere, watch out for sun exposure on doxy.
Does tinidazole attack babesia cysts or do cysts only form from borellia. I am going to see my lyme doctor and would like to bring some of these medications up to him because my heels, neck, and knees are the worst symptoms I have. Also what else works for feeling like I should sleep all of the time. Does Narcolepsy medication help, and does the active B12 work with excessive sleepiness.
Josh, I'm not aware of tinidazole doing anything for Bab. I believe the metronidazole/tinidazole drugs hit both active and cyst forms of Bb, but no one knows for sure. There's some in vitro evidence, but it's hard to really measure something like cyst killing in vivo (in the body). I think that empirically experienced lyme docs find it to be helpful (ie, tolerable and helps folks get better). Iirc, LymeMD likes doxy + tin. I also don't think that any given ab targets specific body areas of pathology, other than needing drugs the cross the BBB for brain lyme involvement (which we all might have to varying degrees). If by narcolepsy meds you're referring to stimulants, I don't really know, but I get the sense that most folks with lyme fatigue aren't helped by any symptom directed med. And stuff like caffeine is to be avoided. Bug killing is what is needed. Of course, some of you might have XMRV and that's a whole other realm. It might be that a subset of lyme patients who do not get well on abx have X and might someday benefit from anti-retroviral meds. There's lots going on with that right now, but it's not available for prime time yet. Stay tuned, Google Judy Mikovits and talk with your lyme doc. Good luck.
It's impossible to know what B12 will do for you, but it's easy to try. I personally got high serum levels using the sublingual methycobalamin lozenges from Life Extension. I can't tell that it did anything for me, but my version of lyme doesn't include fatigue. Lotsa variations on the theme.
I'm wondering if you are open to working with patients from other countries (Europe)? I have recently been diagnosed with Late stage Lyme (5 years). My doctor and I would be looking for a LLMD to work with us - by phone, email???
If there is a possibility, maybe your surgery could contact me: firstname.lastname@example.org
please tell us how to find you, my child is sick am I am stranded in france where I can only receive homeopathic dosages of antibiotics (my dr prescribed only 200mg doxicillin a day). My whole family is sick and if we do come to USA we would probably have no health insurance but I am prepared to pay and to move anywhere to see them better.
Please answer me as I do not know who to turn to any more. email@example.com
Try contacting ILADS, ask to get info about the Doctor in LYMEMD; hope you get his help!
Got the Ivermectin drops in Colombia, South America. The version in the US is called "Stomectol" but comes in a box of 3 pills, not enough for a long term treatment. I guess killing the big bugs - parasites and even worms - has been definitive for starting a way to recovery; of course first having antibiotics and also Bactrim, Flagyl, Tinidazol; all the needed ones. But all those have to be guided by a knowledgeable doctor and with enough supervision.
The Bacteria Borrelia doesn't go away so easily and the treatment has to be very careful and exhaustive; the co-infections help the bacteria to survive in a better environment.
Norway with Dr. Boronson say Flagyl kills the Borrelia in Cystic form - that is what his studies indicate or what I understood from it. Please read the research. I paste here a part:
'Staining with acridine orange (AO), dark field microscopy (DFM), and transmission electron microscopy (TEM) revealed that the contents of the cysts were degraded when the concentration of Metronidazole (MZ) was > or = MBC (minimal inhibitory concentration). Some cysts were also ruptured. When incubated with a sufficient concentration of MZ, core structures did not develop inside the cysts, and AO revealed less RNA in the cysts. Our observations may help efforts to treat resistant infections caused by B. burgdorferi with a combination of Metronidazole (MZ) and other antibiotics in order to eradicate both cystic and mobile forms of B. burgdorferi. http://www.ncbi.nlm.nih.gov/pubmed/10379684?dopt=Abstract
Brorson O, Brorson SH
God bless Norway!
how can i find you? i live near montgomery county and desperately need a lyme literate doc! please help!
Doc - what's your take on low Vitamin D levels? Or Mecury levels? Been not doing to well with my current Lyme doc. By reading through you seem to have the most interest and care. Is there anyway to obtain an appt with you?
I have reason to believe I have lyme disease. (Sorry, I don't really want to write an open comment about my health history).
I live in the Germantown area. I'm hoping to be seen in your practice.
Could you please email me your office contact information.
I'm sorry if you did not have a good experience with him, but first off, you should know better than to use his name..shame on you! Secondly, everyone has their own opinion and while you may not have liked him, many others do and have been helped by him. If you are going to throw comments out there, you should backup your comments with concrete reasons. His thoughts can be a bit scattered, but his mind is racing through information. If you had more than 1 visit with him, you'd realize that. He's highly intelligent and has a vast wealth of knowledge.
I travel from Georgia to see him and gladly do so. He's helped thousands of patients and he puts his license at risk everyday treating them.
Other research from Dr. Sapi, this time showing how two herbs, Samento and Banderol kill Borrelia in cystic form and in spirochette, but they have to complement their treatment with antibacterials anyways!! interesting! http://www.townsendletter.com/July2010/sapi0710.html
To the person here against this Doctor I can tell the Lyme rage is for not following the treatment; better do what this Doctor recommended to you before you get dementia and loose your self.
To the stupid hacker, bug off.
To the ones trying to reach this Doctor look for the ILADS secretary, send her an email.
To the Doctor, please write again,
we certainly miss your posts!!!
Errand thoughts? no way, errand us without your thoughts!!
Hoping you and all yours are okay!
I am concerned that we have not heard from the doctor. Is anyone else concerned? I look often to read the next post because I think he is a physician who has been willing to write about his treatment of some patients and validate some of my own experiences. This is a very serious disease and I have suffered a lot.
Thanks in advance.
Hi, I see it's been a while since you've posted. I hope you are still checking your comments. What about really high B12 levels? My 3 sons have B12 levels in the 2-3thousand range! never been supplemented either. No one can tell me why. Their folate is also high. Could it actually mean a deficiency? help! Also, I am suspected to have lyme. Just got my results back from clongen and my igg was neg but Igm was positive. Im extremely symptomatic for lyme and have been for years now.
So everyone give this doc a break. He may be having his own health problems at this time. At least he started this blog. At least he does not turn you away. He tries and he does care. He is very intellegent and his mind races as his thoughts seem to be faster than he can speak. Just lighten up.
I have to speak up here. LymeMD was doctor number 23 for me, and the first one who finally figured out what was wrong with me. Since I started seeing him, I went from almost totally disabled to almost totally well (it's taken about 10 months so far). No one is perfect, and he can seem scattered at times, but he cared enough to take my symptoms seriously and he is the ONLY doctor who has helped me. Thanks to LymeMD, I have gotten my life back. I don't imagine I am cured of this chronic disease, but I am living a pretty normal life right now and that seems like a miracle after all the months of agony. Thank you Dr.
At one lecture Dr. Burrascano said that B12 in the form of methylcobalamine injections can move metals to the brain. Just something to be aware of.
Hi Dr. J-- I'm glad I tuned in. Very impressive writing skills, says this journalism grad and apparent Lymie.
Miss your blog. Hope you and your people have a great new Year. Me? doing good thanks to IVERMECTINA drops!
I miss your blogging as well!! Hope things are going well.
Hello, I had the B12 shots and did not see any difference (I actually thought they made me a bit aggressive, is this possible? BTW, my doc ordered for me and it was about 70$ for two months pre-filled needles supply). I am now taking Royal Jelly and although there is no real literature available to substantiate the claims of Royal Jelly benefits, I have read it is quite loaded in different Vit Bs and I think it does me well. Just throwing this out there, to see if anyone has also a good experience with this, or whether you have heard about it. Thanks!!!
Please come back and tell us how you are doing.
Dr. Jaller is a fucking idiot
Hi all !
I been living all those lyme symptoms for years. By the way this illness is not taken seriously by french doctors...
So I'm looking for a specialist in Europe (France -Switzerland - germany).
Thanks for your help.
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