26 and going down fast.

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Chris55 » Thu Oct 26, 2006 1:08 pm

SIXSIX--my daughter, who was diagnosed in 2004, is trying an "all natural" treatment from a DOCTOR based on a strep infection. Her results are amazing! She will gladly call you if you'd like. What I like the best about her treatment--it is not expensive and you can still take all of your traditional medication while you take the natural supplements.

Also, look into the antibiotic regimen on this site. Many seem to do very well on it.

Lastly, have you ever been tested for Lyme Disease? This disease is consistently being buried by the medical/drug industry. However, according to the FDA and the CDC, Chronic Lyme is a valid disease. Has MANY of the exact same symtpoms as MS. You would have to find a Lyme literate doctor--no neuro would even consider LD. Also, remember, there is NO DEFINITIVE test for Chronic LD just as there is none for MS! It is a clinical diagnosis (based on diagnostic criteria from FDA).

You also might want to research the symptoms and see if you have any of the non-MS symptoms of Chronic LD. (My daughter had more LD than MS symptoms!)

In the end--I wish you the very best, I will hope you will decide on a very aggressive approach and learn everything you possibly can and that, most important, you will not give up!

Your friend, Chris
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Postby Sharon » Thu Oct 26, 2006 3:37 pm

Chris -

What is the connection between a strep infection and MS? Can you share the supplement treatment?

Sharon
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Postby Chris55 » Thu Oct 26, 2006 4:16 pm

Sharon--according to the doctor, she does not have "MS" but a strep infection. It is a REALLY long story that I posted under the "Natural" forum. VERY BRIEFLY--a gentleman she knows was diagnosed wiith Hodgin's Disease (age 18). After tons of chemo and even a stem cell transplant, his doc told him May 2004 that he could nothing more for him and that he had 6 months to live. The boy's mother found out about this doctor from the Netherlands, discussed with her son's oncologist who said: "Go for it--I can do nothing for him!"

The young man went into Vonner Research as a "test" candidate. It has now been 1 1/2 years, and he is FINE! NO HODGIN'S! His doctor is utterly amazed and wants to run all kinds of tests but understands why the family is opposed. (So that you know this is "real" story and I am not a kook..the mother has her granddaughter in my daughter's dance school. During recital practice last May, my daughter Suzy overheard me discussing all of this with the mother. It was at that point that she decided to try the treatment. You will find comments by this young man's mother at Vonner.com.)

There is a liaison organization in Atlanta--totally non-profit. My daughter called them and talked to them for 3 hours! As for what the supplements are, I cannot tell you! She ordered all of the regimens although it was not necessary. It tells you waht is in each one of the supplements.

As I said, she is doing remarkedly well. She has been on supplements for 5 1/2 months. She has her MRI in February 2007 and we are all anxious to see the results.

I am still withholding "comment". She has a very mild case of MS but with all the medications she was on, her quality of life was virtually non-existent. If this treatment fails, she will go to the antibiotic treatment on this site. AND she can always go back on Avonex if necessary. She and her husband are planning on having a child and she chose to go off of the Avonex prior to getting pregnant. Her neuro--or his nurse since she never sees the doc anymore--had a stroke! My daughter took a breather, then called her neuro's practice and literally let them hold it! The lady she was talking to whispered: You need to do what is best for you!

If my doctor was offereing me basically NOTHING like this poor young man, I would be trying anything and everything as long as it does no harm or break me financially. I would even bay at the moon every other night at midnight if I thought it would help!

Perhaps my daughter's treatment is nothing but anecdotal but as with everything...time will tell!

For one of the greatest posts on this site--see Mormiles. She has become my "soulmate" for life! She put into words so eloquently what I feel so strongly in my heart!

My very best to all of you! Chris
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contents?

Postby jimmylegs » Thu Oct 26, 2006 5:34 pm

not sure chris but i think maybe she meant what's in the supplements?
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Re: Testing for Lyme disease

Postby NHE » Fri Oct 27, 2006 3:56 am

Chris55 wrote:You would have to find a Lyme literate doctor--no neuro would even consider LD.

When I was diagnosed with MS 7 years ago I was tested for Lyme disease. It has been my understanding this was a common step in MS diagnosis, i.e., ruling out Lyme disease as a possible cause of the symptoms the patient presents. I think that your statement, which appears to be all inclusive of every neurologist now in practice, may be going too far. If the neurologists you've dealt with have indeed refused to test for Lyme disease, then it would appear that they are overlooking a basic step in MS diagnosis. I might even go so far to say that such a refusal could even be considered negligent.

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Postby Chris55 » Fri Oct 27, 2006 6:40 am

That is very refreshing to hear, NHE. My daughter's MS specialist in Atlanta said he could not address LD as he knew nothing about it. A friend here at work went to Duke University. Doctor had no clue if she was even tested for LD.

What is a significant distinction here is that there is NO DEFINITIVE test for chronic LD. To be "tested" and be "negative" for CLD would be a misrepresentation. Again, the FDA guidelines for diagnosing CLD are clinical--exactly like MS. The Western Blot has an accuracy rate of about 50+%. However, per FDA, a positive does not mean positive for CLD and negative does not mean negative for CLD.

Again, LD has many of the same symptoms as MS and can have symptoms that are never typical MS symptoms. I think any doctor diagnosing MS should at least have the knowledge and expertise to rule out any and all differential diagnosesincluding CLD. Just my personal opinion...

Jimmylegs--I don't have the ingredient information for Suzy's supplements. She has this information and we have discussed each and every one of them. However, at my old age, I couldn't possibly remember them!!

Anyone who is interested can call Vonner Health at 770-654-9400 (Atlanta).
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Postby sojourner » Fri Oct 27, 2006 9:24 pm

NHE,

You have raised an important point when it comes the differential diagnosis with regard to Lyme and MS. Most people know that MS/Lyme can present exactly the same way---symptoms, spinal fluid analysis (presence of O-bands), lesions on brain and spine, abnormal evoked potentials, etc.

The question then becomes how do doctors diagnose MS and not Lyme?
In walks the Lyme test. The test is used to rule out lyme, but that can be dangerous. The problem is these tests are often very unreliable. Study after study has shown that the tests fail to detect lyme antibodies even in patients with KNOWN lyme disease( they had the definite "Bulls Eye" rash). Lyme is known to disrupt the immune system and many times the sickest patients (like those with neurological symptoms) are the ones LEAST likely to have a positive test.

Here's part of a postition paper produced by ILADS (International Lyme and Associated Disease Society) with included references discussing the fallibility of current Lyme tests. It follows:

The reason that most ELISA assays are inadequate as screening tests is that they were not designed by the manufacturers to be sensitive at the 95% confidence level, the level typically required for screening.5 In fact, Luger and Krause found up to a 56% false-negative rate (depending upon the commercial kit), when compared to their clinical diagnoses.7 Golightly et al. observed a lack of sensitivity (over a 70% false-negative rate) with commercial kits in early Lyme disease and from 4 to 46% with late manifestations of Lyme disease.8 Thus, independent of the ELISA results, using both IgM and IgG Western blots may improve laboratory detection of LD.


Some studies show that it is common to miss patients if only the CDC serological criteria are used.3,4 Indeed, the CDC/ASPHLD criteria for a positive B. burgdorferi Western blot are very conservative.1 Five of ten antibody bands are required for IgG positivity. This cut-off is based on the assumption that all Lyme patients, even those without arthritis and neuroborreliosis, have similar immune systems and responses. The diversity of the immune response seen in other diseases is also disregarded. The CDC’s studies were problematic in that they primarily focused on patients with early Lyme disease (usually within four months of an EM). They also collected blood in most patients every few weeks during this four-month period and counted any positive event (five out of ten bands) as LD, even if the same patient had a negative test at a different time of the study.2

Engstrom et al.2 and Aguero-Rosenfeld et al.3,4 confirmed that almost one-third of all Lyme patients are IgG negative during the first year. Two years after a physician-diagnosed EM, 45% of the patients were negative by ELISA. In another study, Aguero-Rosenfeld et al. showed that the ELISA response declined much more rapidly than the Western blot response.4 Their study also demonstrated that the two-step protocol of the CDC/ASPHLD criteria would fail to confirm infection in some patients with culture-proven EM. Furthermore, although a majority (89%) of patients with the EM rash developed IgG antibodies by Western blot sometime during disease, only 22% were positive by the criteria of the CDC/ASPHLD.4 The Engstrom et al. study did not use the IgG blot criteria of the CDC/ASPHLD.2 They found that 2 of 5 bands gave them a specificity of 93 to 96% and a sensitivity of 100% in the 70% of patients that produced antibody. This could imply an even lower sensitivity would be obtained had the more stringent CDC/ASPHLD criteria been used as a guideline for laboratory screening.

References
1.Association of State and Territorial Public Health Laboratory Directors (ASTPHLD). "Proceedings of the second national conference on the serological diagnosis of Lyme disease." 27-29 October, 1994, Dearborn, MI. Washington DC: ASTPHLD, 1995.
2.Engstrom, SM, Shoop, E, and RC Johnson. "Immunoblot interpretation criteria for serodiagnosis of early Lyme disease." Journal of Clinical Microbiology 33 (1995): 419-427.
3.Aguero-Rosenfeld, ME, Nowakowski, J, McKenna, DF, Carbonaro, CA, and GP Wormser. "Serodiagnosis in early Lyme disease." Journal of Clinical Microbiology 31 (1993): 3090-3095.
4.Aguero-Rosenfeld, ME, Nowakowski, J, McKenna, DF, Carbonaro, CA, and GP Wormser. "Evolution of the serologic response to Borrelia burgdorferi in treated patients with culture-confirmed erythema migrans." Journal of Clinical Microbiology 34 (1996): 1-9.

The full postition paper with many more references is available on the ILADS website.

Furthermore, here is a blurb from the NIAID website which states that Lyme should be a clincal diagnosis. The NIAID is the National Institute of Allergy and Infectious Diseases---the arm of the NIH that deals with Lyme:

Until better tests are available, the diagnosis of Lyme disease must be based on characteristic clinical findings in which the results of laboratory tests play a supportive role. Consequently, primary care physicians in endemic areas must be familiar with all aspects of this disease and understand both the characteristics and limitations of laboratory tests commonly used for the diagnosis of Lyme disease.

Here is the website:http://www.niaid.nih.gov/dmid/lyme/diagnosis.htm

Given this information it is very difficult to say that a standard lyme diagnostic test is good enough to rule out Lyme in a person presenting with neurological symptoms. It simply isn't---not only according to ILADS, but according to the CDC. Say this, however, to most doctors and they would disagree. The lyme test is the only diagnostic tool that most use to rule out lyme. This is WRONG.

I would not want my MS diagnosis based on one (or even two) highly fallible tests.

Lexy
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bloodwork info

Postby jimmylegs » Sat Oct 28, 2006 12:06 am

six six, hope you've been finding out lots of great info!

thought i'd post some preliminary targets for bloodwork here. it is a biased list because i know what turned out to be most relevant for me and have therefore focussed on these first.

vitamin b12 - at least 500 pg/mL (if you find you need to supplement, consider taking a b-150-complex at the same time - i had about given up on what i could expect from b12 but then rolled in a bunch of other b vitamins and it was like magic)

vitamin d3 (25(OH)D3) - 150 nmol/L (if you need to supplement, take one that's blended w calcium and magnesium)

uric acid - 250 µmol/L (you only start having gout/stone issues around 340 and people with ms average 194 in remission and 160 in an attack, while healthy controls average around 250)

you might want to have a look at your iron status. personally i had an atypical situation with iron - they say ppl with ms have elevated iron but i was seriously deficient.

when you are getting results, you will hear a lot of "normal" talk. i would not recommend accepting that at face value. you are interested in "optimal" and i have found that lab reference ranges have almost nothing to do with what matches sick and what matches healthy wrt ms.

that's all i've got for nutrient targets so far, will keep at it.
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Re: Re: Testing for Lyme disease

Postby NHE » Sat Oct 28, 2006 3:34 am

sojourner wrote:I would not want my MS diagnosis based on one (or even two) highly fallible tests.

Neither would I and I don't think I implied that it should be either. Testing for Lyme disease is but one step among many for diagnosing MS.

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Postby sojourner » Sat Oct 28, 2006 6:43 am

NHE,

I think you missed my point.

NHE said,
When I was diagnosed with MS 7 years ago I was tested for Lyme disease


If you were tested for lyme and the tests get a failing grade in accuracy, and our own government says they should not be used to diagnose Lyme, that Lyme (like MS) is a clinical diagnosis, how do you know that you don't have it, or have ruled it out?

This is the central point, I so longwindedly (is that a word??) was trying to make.

Lexy
Last edited by sojourner on Sat Oct 28, 2006 11:39 am, edited 1 time in total.
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Addendum to the iron issue

Postby lyndacarol » Sat Oct 28, 2006 7:55 am

Jimmylegs, you wrote to sixsix:
you might want to have a look at your iron status. personally i had an atypical situation with iron - they say ppl with ms have elevated iron but i was seriously deficient.


I have never had a test for iron levels, but two friends with MS are found to be low and take iron supplements. Who says people with MS have elevated levels? From my observation, I would have guessed it to be low. Could a low level even contribute to the crushing fatigue that some experience? Have those with a fatigue problem had their iron checked?
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Postby Chris55 » Sat Oct 28, 2006 10:25 am

Lexy--thank you so much for your articulate, extensive information on LD. I have read/studied everything available on the subject! Saved it for years as I was/am convinced my daughter could conceivably have CLD.
1. She remembers removing multiple ticks--size of the head of a pin and black (typical of the lyme tick).
2. She was working for an accountant that summer at his home and he contracted and was diagnosed with LD.
3. She had SO MANY non-MS, typical LD symtoms! Her MS did not present like "normal" MS--whatever that is??
4. Her non-MS symptoms--that have been totally ignored by her MS doc--included: severe joint pain in the large joints; severe chest/rib cage pain (very typical LD symptom). It was so bad, they removed her gall bladder--no improvement. Her neuros said it was (a) arthritis or she needed to see a cardiologist!!! TMJ, irregular menstral problems, constant headache, a sudden intolerance to milk, sub-normal temp, bizzarre personality changes (not typical of MS), severe spasicity (typical in late stages of MS), etc., etc.

Food for thought on the subject of the refusal of the medical community to acknowledge this (real) infection: A few years ago, the CDC put a conservative estimate of undiagnosed cases of LD at about 7 times the reported cases at that time (29,000 from all but one of the united states.) If we multiply 7 x 29,000, we get 203,000. Subtract 29,000 and we have 174,000. If these 174,000 cases were diagnosed as MS and we subtract that amount from the approx. 400,000 MS diagnoses, we are left with about 226,000 cases of MS and LD comes close to being equal. This could be devastating to the MS medical community.

They have already found two co-infections in LD and have no idea how many more could exist. The LD bacteria is the same kind of bacteria as syphillis--a spirote(sp???). It leaves the blood stream and "spirals" into the tissues. One can have syphillis for 20 years without ever showing a symptom. Once it leaves the blood stream, it will not show up in a blood test.

There is a new DNA test out of California that is pretty accurate. But as you pointed out, the test is really irrelevant. Testing positive does not necessarily mean Chronic Lyme.

Because CLD can present almost exactly like MS but also effects the joints and muscles, if one has symptoms that are MS and LD consistent, I just feel a serious investigation is in order.

Again, I feel my daughter could easily have LD. It is such a difficult "catch 22" because LD is not receiving the credence it deserves.

Thanks again for your excellent/informative post! Keep on keeping on!
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Postby LisaBee » Sat Oct 28, 2006 11:12 am

I've often wondered about Lyme disease as a differential for myself. I've had two bouts of costochondritis, which is a chest cartilage inflammation and is pretty painful. Chris55's descriptions made me think of that again. My neuro has never asked me about a history of tick bites, or illness or rash related to ticks, but I have in fact had that, about 15-17 years ago. I also had childhood run-ins with tick bites, as I spent a lot of time in the woods as a kid.

I can't speak for neuros generally, but Lyme was not mentioned by any of my docs, so I don't necessarily believe that it is a general neuro protocol to consider Lyme in a differential for MS, even though every thing I read suggests it should be. I haven't brought it up to the doc because I don't know if there are any good, reliable tests for diagnosing chronic Lyme infections and I already know he is very opposed to antibiotics without a clear indication. I've thought about going outside my insurance system to get a Lyme test, but there are a lot of bogus tests floating around out there and I don't know how good they are.

I also have also wondered how the Wheldon protocol antibiotics act in the case of the Lyme organism, and if some of the improvements people have had on the antibiotic regimen are due to treatment of undiagnosed Lyme as opposed to the mycobacteria Cpn. The Lyme organism is a spirochete, as indeed is syphilis. I don't know how closely Lyme and syphilis are related. Certainly the transmission route is not the same between the two, although history is full of the devastation caused by long-standing infection with syphilis. Maybe Anecdote could comment on the possibility as to whether the antibiotic regimen could be inadvertently zapping an undiagnosed chronic Lyme infection in some people. My microbiology and knowledge of species-specific antibiotic sensitivity isn't good enough to let me guess on that one.

Lisa
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More ideas with Lyme Disease connection

Postby lyndacarol » Sat Oct 28, 2006 11:58 am

I have posted much of this once before, but feel it might be appropriate again.

I have a friend with an MS diagnosis in Ohio; she thinks her problem is really Lyme Disease. I will copy and paste here some of her info:

"One doctor who is up on hormones as they related to Lyme and all of the co-infections is Dr. Crist in Missouri. His website is: http://www.drcharlescrist.com/

hypoglycemia is very prevalent in Borreliosis also. All of these diseases are related.

Researchers in Sweden have proven that most MS cases are caused by the L-form of Borrelia burgdorferi! It is hard to test for. It does not show up on the normal ELISA or Western Blot for Lyme disease. I have pictures of my blood taken back in 2000. My Borrelia spirochetes have morphed into the L-form.

Bowen labs in FL test for all of the forms of this spirochete (www.Bowen.org). I am controlling my blood sugar by eating protein every few hours. If my blood sugar falls too low I get in trouble.
I also stay away from sugar and white bread!

My Lyme literate doc in PA had me on Levoxyl for the thyroid also.

There is so little known about the L-form of the Borrelia spirochete. Some researchers call it the cyst form of the bacteria. I have pictures of that form of the bacteria in my body. It is a for not easily found.

I know lots of Lyme patients that are hypoglycemic. I am sure this bacteria messes up the body's insulin levels. It does so much else!

I still believe a MS diagnosis is bogus. It is a cop out dx for docs who are too lazy to look for a true cause!

Bowen labs in FL is probably who you heard the name Bowen from. Dr. JoAnne Whitaker is the researcher. I am not sure where the Bowen name came from.

Dr. Lida Mattman has been researching stealth viruses for years. Her books can be found on Amazon. She also talks about the L-form in her books.

In addition to the Lyme spirochete it is also important to get tested for Babesia and Ehrlichia.

Both are equally just as bad.

I wish somebody would study all of these so-called "autoimmune" diseases with an open mind. I guess there is too much money to be lost if it is found that there is one underlying cause."

She has also mentioned ILADS (www.ilads.org). Are you acquainted with this group?

Maybe you folks will find something here useful.
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Postby sojourner » Sat Oct 28, 2006 5:22 pm

Lyndacarol,
As to not hijack SIXSIX's thread, I am starting a new one because I want to describe what has happened to my husband with regard to metabolism since he started treatment with abx.

SIXSIX, I wish you the best. I'm certain you are getting excellent info from the people here. They are first rate!
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