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11/21/2008 15:31
king2626
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I keep getting waves of pain on my right big toe. It just moves up my toe for about 30 seconds then goes away, then comes back an hour later. I have been having so much pain in my body the past few days. Has anyone noticed (before ax) the symptoms change day to day, like for a few days lots of pains, then when that goes away tons of twitching for a few days, etc..My twitching was HORRIBLE for 2 wks, as was the vibrations but my pain was okay. The twitching mellowed out a lot and that is when the pains came back on. Seems to be odd cycles...

Also the past 2 wks it feels like something goes in and pinches a muscle for a minute then stops--

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11/22/2008 05:55
jaime1978
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unfortuantly, pain is a big topic with lyme. I know it's my biggest symptom. well, since starting treatment and herxing, they are all a close second now, but I can certainly relate to the pain. I've been on some of the strongest pain meds out there, and still on a "good" day, if you want to call it good, my pain levels would still hover around a 7, on a 1-10 scale. I can't remember the last MINUTE i've had in my life that was pain free. Just gotta keep telling myself, one day it will come.

I didn't have twitching until I started abx. Now it's like I have parkinsons sometimes it gets really bad. sometimes I can't even read my own writting.

Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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11/22/2008 07:13
buckron
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That Pain Sucks Jaime..I wish i could help in some way.Are you on a natural protocol? I forget.
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11/22/2008 08:59
cmany
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King...

In my experience (hee hee ME), this is rather typical of neurological damage. I have constant tingling, burning, and pinching. Along with a constant radial electric pulsing in my left arm, shoulder and it extends at times over my heart. My muscles twitches hit me randomly, and have now just become an annoyance - I have learned to block the pain that it causes - unless it carries on for extended periods.

You really need to look into treatments both conventional and alt that will help address your neurological problems...

Christine

I know what I am and I know what I am not

Never put it past this disease to be the culprit - but we also cant brainwash ourselves into believing that it is the only thing

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11/22/2008 10:24
jaime1978
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I hear magnesium is good for twitches.

also, B12 is great for our nervous system, BUT it can't just be B12 from the shelf, or even the injectable from just any old pharmacy, those are usually cyanacobalimin. You should get methacobalimin, it's injectable, I've used it a lot, it's not that hard, and you have to get it from a compounding pharmacy. If anyone decides to do this, and you need help administering the shot, I will give you my phone number and talk you thru it. I remember my first 5 shots, I was on the phone with my best friend , who also uses it, shaking like a leaf, and she talked me thru each one. Here's some info on it:

it's long, but worth the read:

B12 Injections / Help with neuro repair and metal detox

Lyme patients are often lacking in the "B" vitamin department. It is important to have a good oral multi B vitamin. B vitamins are water soluable so they go right through you and I have read that they are very hard to "over do" if not impossible.

If you are looking into B12 injections make sure to follow Dr. Burrascano's guidelines and have your LLMD order methylcobalamin from a compound pharmacy. See Dr. Burrascano's recommended dosages for neuro issues in his treatment guidelines: http://www.ilads.org/files/burrascano_0905.pdf

Cyancobalamin B12 is a very weak vitamin and the body must convert it to be useful. I quit using it when I realized the ingredients list on the bottle showed "aluminum". I am not sure if that is what I think it is, but I didn't like it and insisted my LLMD call in methylcobalamin to a compound pharmacy. I think you will be shocked at what one doctor (below) had to say about each.

Methylcobalamin pricing can vary greatly, depending on pharmacy or strength ordered. I advise to check compound pharmacy pricing, but have found for myself McGuff Compound pharmacy to be the best priced: http://mcguffpharmacy.com/ Your doctor can call it in and they will ship it to you once they get your billing info, address, etc..

Methylcobalamin has been proven in studies to cure Bell's Palsy, regenerate nerves that are damaged, contribute to better sleep and much more. It can protect the myelin sheath that insulates nerve fibers and most recently found to detox heavy metals.

Methylcobalamin vs Cyanocobalamin (Answer by Dr. D'adamo):

Cyanocobalamin is the most commonly supplemented form of vitamin B12, but you might be surprised to discover that this form of vitamin B12 does not actually occur in plants or animal tissues. In other words, outside of the chemically synthesized cyanocobalamin that you encounter as B12 in most vitamin supplements, you would be extremely hard pressed to find this compound in nature (in fact you would not be able to find it). As the name implies, cyanocobalamin contains a cyanide molecule. Most people are familiar with cyanide as a poisonous substance. Although the amount of cyanide in a normal B12 supplement is small and from a toxicology point, viewed as insignificant, your body will still need to remove and eliminate this compound. This removal is accomplished through your detoxification systems with substances like glutathione being very important for the elimination of the cyanide.

Compared with cyanocobalamin, it appears that methylcobalamin is better absorbed and retained in higher amounts within your tissues. In simple terms, they are used much more effectively. In general, methylcobalamin is used primarily in your liver, brain and nervous system.

Methylcobalamin is the specific form of B12 needed for nervous system health. Because of this it should be the first form of this vitamin thought of when interested in attempting to optimize the health of the nervous system with vitamin supplementation. Indications of a potential deficiency of B12 in the nervous system might include numbness, tingling, loss of feeling sensation, burning sensations, muscle cramps, nerve pain and slowness of reflexes.

Because of methylcobalamin's importance in nervous system health, it is also an important nutrient for vision. In fact, continued visual work (like work on a computer) often leads to a reduction in something called "visual accommodation". Methylcobalamin can significantly improve visual accommodation, while cyanocobalamin appears to be ineffective.

An elevated level of homocysteine is a metabolic indication of decreased levels of the coenzyme forms of vitamin B12, especially methylcobalamin. Homocysteine has received a tremendous amount of emphasis in the scientific literature because of its associations with heart disease and a variety of other specific health conditions. I have even seen advertisements on television promoting folic acid, as a vitamin needed to lower homocysteine. While this is true, and folic acid does lower homocysteine levels, the combination of methylcobalamin and folic acid appears to work much better.

The most well studied use of methylcobalamin has to do with sleep. Although the exact mechanism of action is not yet clear, it is possible that methylcobalamin is needed for the synthesis of melatonin. Available information indicates that methylcobalamin can modulate melatonin secretion, enhance light-sensitivity, and normalize circadian rhythm (your 24-hour clock). Because of this, individuals supplementing this form of B12 often have improved quality of sleep, often will require slightly less sleep, and will not uncommonly report that they feel a bit more refreshed when waking in the morning. Methylcobalamin is particularly effective when your 24-hour clock is not running smoothly. This may be indicated by a need for excessive sleep, changing sleep-wake cycles, or a tendency to have altered sleep wake patterns. As examples, you might require 10-12 hours of sleep, or you might not feel tired until 2-3 am and you might wake at noon, or you might find that you wake a bit later every day and go to be a bit later every night. Under all of these circumstances the combination of methylcobalamin (about 3000 mcg daily) and exposure to bright light in the morning can help reestablish your 24-hour clock.

Because of methylcobalamin's impact on 24-hour clock and the cycles that feed of this, it is also an important vitamin to regulate your 24-hour release of the stress hormone cortisol. This seems to be particularly important for blood types A and AB. Methylcobalamin also seems to result in a better 24-hour maintenance of body temperature. Typically individuals supplementing this coenzyme form of B12 have higher temperatures in the later hours of the daytime. This usually corresponds with improved alertness at the same time of the day. While this can be of importance to all blood types, low body temperatures seems to be an area of greater challenge for A's and B's.

B12 deficiency:

Vitamin B12 has a long history and a solid reputation as an energy booster, and it is among the most important of all the B-complex vitamins. Vitamin B12 deficiency may result negative in hematological, neurological, and gastrointestinal conditions. Gastrointestinal effects of B12 deficiency may include diarrhea, constipation, abdominal pain, excessive flatulence, and a burning sensation on the tongue. Vitamin B12, a member of the B-vitamin family, is a term used collectively to represent a group of cobalt-containing compounds known as corrinoids. The principal cobalamins are cyanocobalamin, hydroxocobalamin, and the two coenzyme forms of vitamin B12, methylcobalamin, and 5-deoxyadenosylcobalamin (adenosylcobalamin). However, the term vitamin B12 is usually used to refer to only one of these forms, cyanocobalamin, which is used to fortify foods and nutritional supplements. Vitamin B12 is a water-soluble vitamin required for normal cell activity, DNA replication, and the synthesis of the mood-influencing substance SAMe. Vitamin B12, also known as cobalamin, works with folic acid to produce healthy red blood cells. Vitamin B12 also keeps your central nervous system healthy.

Vitamin B12 helps maintain the myelin sheath that insulates nerve fibres from each other. B12 deficiency can cause a type of anemia marked by fewer but larger red blood cells that's called pernicious anemia. It can also cause walking and balance problems, sore tongue, weakness, confusion and, in advanced cases, dementia. Vegetarians who eliminate all animal sources from their diet (also known as vegans) may benefit from taking a vitamin B12 supplement. Vitamin B12 is bound to the protein in food. Hydrochloric acid in the stomach releases B12 from proteins in foods during digestion. Hydroxocobalamin is a man-made form of vitamin B12. Vitamin B12's main functions are in the formation of red blood cells and the maintenence of a healthy nervous system. Prolonged B12 deficiency can lead to nerve degeneration and irreversible neurological damage. People with vitamin B12 deficiency show irregular destruction of the myelin sheaths, which eventually causes paralysis and death.Vitamin B12 levels decrease with age and various measures of cognitive impairment are associated with reduced B12 status. Vitamin B12 deficiencies occur when the body is unable to properly use the vitamin. "

For more on peripheral neuropathy and vitamin help see this link; http://www.mcvitamins.com/neuropathy.htm

1) If methylcobalamin sounds familiar it's because it is the chemical name for Methyl-B12, aka MB12, MeB12, etc. The form of B12 being used to treat autism by many DAN! Practitioners. Methylcobalamin is an essential reagent for the synthesis of the very toxic form of mercury, methylmercury, and the extremely toxic/lethal form dimethylmercury.

(2) Methylation and Multiple Sclerosis

Folate and vitamin B12 deficiencies (methylcobalamin has greater neurological importance than cyanocobalamin) can cause neurologic and psychiatric disturbances, including depression, dementia, and demyelinating myelopathy (9). In most cases, folate and methylcobalamin injections improve MS symptoms and prevent relapses. Treatment with additional methyl donors such as S-adenosylmethionine, betaine, or methionine can also relieve depression and promote remyelination in patients with inborn errors of folate metabolism.

(3) Laboratory test tube, in real live human beings or animals when given subcutaneously, intramuscularly, or intravenously. This was confirmed to me in personal communication with Boyd Haley, PhD, who has done much work in this field. In addition, please refer to the work done by the Swedish physician, Dr Britt Ahlrot-Westerlund, and her success with treating patients with high doses of injectable methylcobalamin status post amalgam removal for further elucidation on this subject. (Please discuss w/your doctor or compound pharmacist whether your B-12 injections should contain a preservative. In some literature it is said that preservative can cause problems in a detoxing patient.)

(taken from www.truthaboutlymedisease.com)

Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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