# Nick lands at PubMed seeking MS info...



## NickT (Oct 3, 2000)

My apologies to the readership if they think I am spending to much time posting about MS in a CFS forum.My current research is leading me to wonder if CFS and MS are related. Some people say yes. I don't really know, but imho possibly what benefits one, would also benefit the other.These are some current abstracts that I have been reviewing from PubMed. They seem to be upto date (circa 2000).Rather than risking a possible copyright violation, I am posting the title and the link, instead of posting the entire abstract.I actively seek your comments and opinions. I'm starting to think no-one reads these posts of mine as few people ever comment on them, and I am wasting my time keeping the readership informed of things I discover.I might not agree with all things that I post, but I would be interested in seeing at least some discussion about them. Even if it is to say hogwash.*The possible role of gradual accumulation of copper, cadmium, lead and iron and gradual depletion of zinc, magnesium, selenium, vitamins B2, B6, D, and E and essential fatty acids in multiple sclerosis.* http://www.ncbi.nlm.nih.gov/entrez/query.f...6&dopt=Abstract *Vitamin D: a natural inhibitor of multiple sclerosis.* http://www.ncbi.nlm.nih.gov/entrez/query.f...7&dopt=Abstract *Vitamin D and autoimmunity: is vitamin D status an environmental factor affecting autoimmune disease prevalence?* http://www.ncbi.nlm.nih.gov/entrez/query.f...4&dopt=Abstract *Lyme borreliosis and multiple sclerosis: any connection? A seroepidemic study.* http://www.ncbi.nlm.nih.gov/entrez/query.f...5&dopt=Abstract re: the references to Vitamin D, supplemention might come better from a vitamin pill, instead of from milk itself.The "Calcium" regimine that LNAPE suggests in the IBS forum appears to be a very good one, possibly even better if the calcium is supplemented with Vitamin D and magnesium.


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## Debbielee (Jun 14, 2000)

Ok Nik,Rest assured that your posts are read by me. I dont always respond because i may not know anything about what your posting on.But you GOT me with this one.The Lyme and MS connection. As i was diagnosed with Lyme disease in sept. and left with FM. I have read other things suggesting this. Scares the tar out of me!Lyme is another misunderstood disease and the medical community is in disagreement on how long to treat it. For example--the standard treatment--3-4weeks on antibiotics---my Dr. says it should be gone--i dont think it is gone and i know others who have been on antibiotic therapy for years. I do not want that either.The Lyme bacteria is a spirocete and is very adept at hiding out in the bodies cells and tissues--multiplying!But just like FM----lyme is not taken seriously.Also--Selenium is a must for menapausal women.Debbie


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## NickT (Oct 3, 2000)

Debbie, It concerns me that this information, may upset or scare you. But it is presented in the spirit of sharing knowledge. At last it seems that researchers are finally starting to see the light. However, I sure these thoughts and fields of research are controversial. These people could be as far off the mark as anyone, but their theories do sound intriguing. and as such should at least be considered.Like you, I was bitten by a tick that burrowed into my skin. I didn't have the characteristic "bulls-eye" of the Lyme disease diagnosis, but I've always thought that little chigger was root cause of my trouble. Detection of an actual "spirochette" seems to be controversial even for the researchers on this team.


> quote: This is written in response to requests for information about our research in relation to multiple sclerosis and the chronic fatigue syndrome. I am a physician (pathologist) on the faculty of Texas A&M University, College of Medicine and am also associated with a private research and development firm, Pacific Biotech International, Inc. and its diagnostics manufacturing subsidiary, Pathobiotek Diagnostics Inc., located in Houston, Texas. In the latter two I have been studying several newly recognized microorganisms, one of which is the one of interest here. The microorganism is a peculiar bacterium. It was discovered essentially by accident in blood samples. *Although a colleague is convinced that it is a spirochete, my data says it is not.* It probably is going to define a new group (genus) of bacteria. It is present in all of the population. Recent data suggests that it is acquired prior to birth, although new strains might be acquired later. It is generally present in higher numbers in persons who are symptomatic and it has been recovered from cerebrospinal fluid. There is no direct proof that it causes either of these diseases or any other disease, but in persons who have been treated with appropriate regimens, a reduction in these bacteria is associated with clinical improvement and an increase corresponds with increased symptoms. It is presumed that the symptoms require not only the presence of the bacterium, but also some sort of immune or inflammatory reaction against it to produce disease that is not present in asymptomatic individuals, but this is not yet proven. Most individuals have no immune reaction against it because its presence prior to birth leads to immune tolerance. Individual strains of bacteria may be important, but this has not yet been studied. It is possible that the imune reaction is triggered by exposure to other organisms or chemicals. We are not treating any patients with this organism ourselves. Our primary interest at present is in improving the culture systems and understanding the characteristics of the organisms and whether and how they cause disease. We have developed EXPERIMENTAL treatment regimens that have shown benefit in some patients, using standard FDA-approved antibiotics. These are available for use by any physician, but they are definitely not guaranteed to work with the majority of patients. We have seen good responses in about 20% of MS patients with a marked improvement in function; chronic fatigue patients are more likely to show a short-term response, but again only about 20% have achieved a long- term relatively complete response. Part of the problem is that many of the organisms lack cell walls; some antibiotics act by destroying cell walls and therefore are ineffective. We are constantly looking at alternative treatments that may work better. None of the available treatments are free of hazards and many of these drugs are expensive. The average cost of these drugs works out to about $300 a month from most sources, although some insurance programs will cover them if the paperwork is submitted properly. A good result on these regimens is definitely not equivalent to cure. I have no evidence that the bacterium can be completely eliminated. Some CFS patients have remained asymptomatic after treatment, however, and some MS patients have sustained a clinical remission while on antibiotics that has apparently allowed major healing with a marked improvement in their condition. How long that improvement can be sustained and whether or not treatment can be repeated in the future is unknown, but it is likely that most patients will eventually develop resistance to antibiotic treatment. Assuming that the organism can be confirmed as the cause of these and/or other diseases, the long-term goal of the research is to study the immune response to these bacteria and to develop better treatments by finding better drugs or developing an effective vaccine or both. We recommend patients are treated on these regimens only with culture monitoring of the number of organisms and with antibiotic sensitivity testing. We have found that under certain circumstances antibiotics can actually stimulate bacterial growth and make the patient worse and that this can often be predicted by the cultures. I will be happy to work with your physician to do the cultures and sensitivities and provide the treatment regimens. Your physician must be willing to place you on an unproven, EXPERIMENTAL protocol and you yourself must be willing to assume the risks associated with an EXPERIMENTAL treatment. It requires about a month to run the cultures and antibiotic sensitivities. The culture system has been less than optimal, but it is rapidly changing. This may speed the turnaround and improve accuracy. In the event that your bacteria prove to be resistant to the antibiotics, you may still derive benefit from nutritional adjustments, which may do nearly as much good as the antibiotics over the long term. We have recently learned a lot about the basic nutritional requirements of the bacterium and why its growth in the body is so limited. This information allows the growth of the bacteria to be manipulated within limits. The single most important component of that appears to be zinc supplementation and avoidance of other minerals, although other measures also have value. It is recommended that nutritional adjustments be begun prior to the antibiotics if they are used. Most of what we have found to be true about the optimum nutritional regimen with regard to this bacterium is good nutrition anyway for other reasons. Due to the expense of the research, we have been forced to request a donation to cover the cost of the cultures. The minimum donation is $40.00 U.S. per culture. There is the option to make a larger contribution to the research foundation, but that is strictly voluntary. The foundation has official nonprofit status. We will continue to do cultures on previously enrolled subjects without donations. The research foundation exists for the sole purpose of supporting our research and the minimum donation will only cover the expenses associated with these cultures, including the materials, data collection and collation. It is important that we receive feedback on patient progress, as this is the only way we will be able to adequately establish that the bacterium is or is not the cause of these diseases and improve the treatment available. Donations should be submitted either with culture specimens or should be mailed prior to specimen shipment. The foundation name is the Lindner Research Foundation. In the event that you are interested in this treatment, contact your physician. A copy of the basic treatment protocol and of the directions for culture submission is attached to this statement. If he/she is willing to try the treatment, have him contact me if he/she has any questions. My office phone at Texas A&M University, where I am during normal working hours, is (409) 845- 7260, E-mail lindner###tamu.edu. My home phone is (409) 693-3940, fax (409) 693- 2658. The lab in Houston, where I am usually only on saturdays at this time, is (713) 939-1833, fax (71) 939-1835. Copyright Luther E. Lindner M.D., 1995-7. This document may be copied and shared with others. Version 4-6-97. Soli deo gloria.


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## Debbielee (Jun 14, 2000)

Hi Nik,As you--all my troubles began with that tick bite. I too did not have the rash.I go to a Lyme board where it is obvious that FM and Lyme are misdiagnosed. For me they just say i have both. No Dr. can tell me if it is really gone or ever will be.Many have been diagnosed with MS only to find out it was Lyme. I believe a spinal tap for Lyme is the only way to really know if there are spirochettes lurking within after treatment.What condition Nik are you suffering with?And what was done for your Lyme?There are those with Lyme that swear by the long term anti-biotic treatment but they are still sick? Very confusing to me but i am of the mind that long term anti-biotics are not a good thing.I am very interested in the vitamin regime as i believe shoring up ones immune system to fight off bacteria is the best defense.But i admit to being just as confused about what to take regarding Vit. as anything else.Any help with this would be great.Dont be concerned if something is scary to me--i am glad to get the info.Debbie


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## NickT (Oct 3, 2000)

I'd just like to start this by saying I am not a doctor, medical student, biologist. I am just a curious guy, armed with a search engine, trying to figure out what the heck is wrong with me.I have no firm evidence that CFS or FM will lead to MS, or even that CFS is just another name for MS. I do have an open mind to things, and at this time am just reviewing the *possibility* of a connection.Although I am optimistic when I see researchers moving in the direction that I have suspected for years. I am also skeptical enough know that these guys and theories evaporate like the mythical city of Brigadoon (Camelot) disappear when held up to the light of day.Now having said all that, I would like to say that I am cautiously optimistic.People don't usually publish unless they are at least reasonably sure, that their theories will hold up to the scrutiny of the scientific community.If in fact that the addition of *Vitamin D* will arrest or stop the progression of this condition/illness. I would think the addition of Vitamin D would at least be a good idea to stop the thing from getting any worse, until researchers come up with definative treatments and cures.Vitamin D is nothing more than fish oils. Cod Liver, Herring, Salmon, etc. Sunshine also helps the body manufacture Vitamin D.vitamin stores also sell fish oil capsules for those (me) who loathe the taste of fish.Now it is possible to *overdose* on Vitamin D, so don't think if a little bit is good, a lot must be better. Follow guidelines and reccomendations on this consumption.*VITAMIN D HORMONE BLOCKS MULTIPLE SCLEROSIS-LIKE SYMPTOMS IN MICE* http://www.cals.wisc.edu/media/news/09_96/996ms.html *VITAMIN D SUPPLEMENTATION IN THE FIGHT AGAINST MULTIPLE SCLEROSIS* http://www.direct-ms.org/vitamind.html I'd also reccomend calcium to as most of us are depressed, and my research has shown me than depression can lead to osteoporosis, and bone thining.Vitamin D and calcium usually go together. I think the vitamin D assists in the absorbtion of calcium. LNAPE and her "Calcium Crusaders" are probably ahead of the curve with their discovery on this, and you can see how well they are progressing.*Calcium and Vitamin D Deficiency:The Clinical Work and Theory of Carl J. Reich, M.D.* http://www.arthritistrust.org/topics/calvitd.htm I'm still deciphering the rest of Dr. Lindner's advice as far as what other vitamins are recco'd and I'll return to this post when I get the rest figured out.For right now....


> quote:I strongly recommend an increased intake of zinc. Zinc suppresses the growth of these bacteria in culture and increased zinc intake competes with the other minerals that we have noted as a problem, resulting in less absorption, increased excretion, and less availability within the body. Zinc also has a beneficial effect on the immune system in general, which is why it was originally recommended. The recommended amount is 25-50 mg. a day of zinc as zinc sulfate or an equivalent zinc compound for the average adult. Amounts over that can lead to overdosage. Luther E. Lindner M.D


Work calls and I must log off.bblHTH - NickT[This message has been edited by NickT (edited 01-22-2001).]


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## Debbielee (Jun 14, 2000)

Thanks Nik,You didnt tell me what they did to treat your Lyme. If you dont mind sharing that info--i would like to know.Do you have MS?Debbie


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## NickT (Oct 3, 2000)

Debbie, I was never treated for Lyme. In fact it was so long between the bite/burrow that I never made the association before.In my research into Lyme disease, they tell me that because I live in So.Cal I should not be at risk for the disease.Detection of the "spirochette" still seems to be the smoking gun apparently. Although I am starting to think that the "spirochette" is not neccessary, and other ticks might carry something else similar.I see they now have a vaccine for Lyme disease, Debbie any benefits of taking it after the bite?As for the MS, I dunno what the heck I have. I am just now looking at it's symptoms (MS) and wondering if that's it. I seem to pass on several of it's criteria.Caucasian - True,Resident about 40 degree latitude - True (Canadian citizen),Muscle weakness - True, Vision problems - True. Exposure to toxins, heavy metals or fertilizers - True. Onset of symptoms - mid 30's.So who really knows. I'm starting to monitor MS boards and see what they have to say. Regards - NickT


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## Debbielee (Jun 14, 2000)

Nik,First---the ticks caring Lyme are in all 50 states. But the tick that carries lyme is exclusive to the deer tick---very small and different than the more common wood tick.The vaccine does no good after the fact---in fact it is not a good vaccine at this point and only about 60-80 percent effective. Some have gotton sick from it.But you can be tested for Lyme-- a simple blood test--first the elisa and then the western blot. there are other tests also but these are the more common. Im going to look up the url to the site i go to and post it for you.Debbie


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## Debbielee (Jun 14, 2000)

Here you go Nik. check out the forums too. http://lymedisease.about.com/health/lymedisease/mbody.htm Debbie


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## NickT (Oct 3, 2000)

Debbie, thanx for sharing your knowledge and posting the url for Lyme.Looks like much information on the site.Unfortuneately work is starting to pick up now after the holidays. Will visit your link and comment in a few days.Regards - NickT


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## NickT (Oct 3, 2000)

So I've been doing some minor research into Cod Liver Oil as a source of Vitamin D on the web. Here are some interesting things that I have turned up.*Can Cod Liver Oil Help Prevent Diabetes? Norwegian Study Suggests It Might* http://webmd.lycos.com/content/article/1728.61624 Then I started reading about the work of Dr. Mary Megson.Cod Liver Oil is very popular in the treatment of autism and ADHD based on the research of Dr. Mary Megson in Virginia. Dr. Megson has found that the natural Vitamin A in Cod Liver Oil is helping autistic and ADHD children. http://www.megson.com/ http://www.whaleto.freeserve.co.uk/v/megson.html Dr. Mary Megsonï¿½s presentation at the 1999 Defeat Autism Now! (DAN!) conference drew a very favorable response from the audience.This was the title of her presentation...*IS AUTISM A G-ALPHA PROTEIN DEFECT REVERSIBLEWITH NATURAL VITAMIN A?*Mary N. Megson, M.D., F.A.A.P.Highland II Office Park7229 Forest Avenue, Suite 211Richmond, VA 23226For the full article go to... http://www.autism.com/ari/megson.html Quoting from the article....


> quote:The far-reaching metabolic consequences may be enormous, with potential links to not only autism, but dyslexia, attention deficit hyperactivity disorder (ADHD), bi-polar disorder, schizophrenia, Chronic Fatigue Syndrome, fibromyalgia, Type II hyperlipidemia, gluten enteropathy, cancer of the mucous secreting glands, and autoimmune disorders including muscular dystrophy and rheumatoid arthritis. S-Adenosylmethionine (SAMe), called a supernutrient, is an enzyme-important in acetylcholine synthesis. Loss of gut mucosal integrity would decrease by 85% gut absorption of CoA, shunting choline into homocysteine production. Increased production of acetylcholine may explain why a continuous dietary source of this nutrient makes people with multiple disorders feel better.


I've got to mull this over, but geez off hand this research blows me away.


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## NickT (Oct 3, 2000)

Debbie; Don't know if you caught a "Dateline" segment that ran on Weekend Today, Saturday 2001.01.27It was about Lyme disease. Covered nothing that we don't already know, but at least it was some coverage.It primarily focused on long term anti-biotic therapy. (I don't know if I agree with it, but at least am open enough to listen to the spiel.)Apparently, this is quite a controversial treatment. The report focused on Dr's whose liscense to practice was being called into question by various state health and peer review boards (Medical Societies.)Some were being threatened with loss of liscense to practice medicine for prescribing this treatment.An interview with some patients was very interesting. Some people were quite millitant that their Dr.and treatment options were being questioned, when they themselves were seeing such good results.I really don't know about this. I tend to think possible bacteria and fungual conditions are somehow secondary to the x-event. Results being seen are based on oportunistic infections, but it's only a guess.I was wondering if the tick could have possibly infected us with some sort of venom, which would be neither bacteria or virus based. Snake bite is not usually treated with anti-biotics is it?*Bought my first bottle of Cod Liver Oil this weekend. *Yuck!*. I be hard pressed to remember when I put something so terrible in my mouth. About half the price of Flax Oil. I have no illusions of a cure, but am looking to stop progression until science catches up.I'll be adding the calcium next week.


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## Debbielee (Jun 14, 2000)

Yes Nik, i did see that show and am very familiar with the controversy.If you take a peek at the forum at the site i posted you will see many on this treatment. I am in personel contact with many of them---but i gotta tell ya--they arnt better. There does not seem to be an end in site for the stopping of the treatment also.The question here is Lymes Chronic? This, i am trying to figure out myself but i am not sure myself about the benifits of of long term anti-biotics.Cod liver oil? YUCK!Debbie


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## Guest (Jan 30, 2001)

I am one that is on the antibiotic protocol. If you check out roadback.orgyou will see that people are getting better on long term antibiotics. Granted, most of these people have fibro, lupus, RA, JRA, and other autoimmune illness, not lime, but they are getting much better. There is a sight, I believe it is egroups.com and there is a cfs/mycoplasma group and some of them do have lime infection and are on the protocol.I have been on the protocol for 7 months now and am starting to see some progrss (I have fibro and lupus). It is a low pulse therapy and it takes time. Some people have been on it for over 4 years and still seeing progress. I am dealing with a little bit of yeast but it is not bad. You have to keep on top of it. I have modified my diet with no sugars or sweets, breads. I am eating very healthy with fresh veggies, salad, fish and a little bit of meat and chicken and feeling better. Just letting you know that it does work. Hope this helps your thoughts. Lynne


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## NickT (Oct 3, 2000)

Wednesday January 31 7:42 PM ETWarnings Urged for Lyme Vaccine http://dailynews.yahoo.com/h/ap/20010131/h..._vaccine_1.html Studies: No Vaccine, MS Link http://dailynews.yahoo.com/h/ap/20010131/h...e_safety_1.html


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