Who are the viral experts, here?

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For CureOrBust

Postby Minai » Thu Jul 13, 2006 12:29 pm

Hi CureOrBust,

Just visited the Alternative doc, again, so have an update.

CureOrBust wrote:
Minai wrote:Will PM the URL to you.

Thanks.


I will provide one or two links to products, here, this time, too.

First, a little more background on this doctor and his practice...

His office is always full. Many MS patients. But, many young children with Autism. He believes that both MS and Autism are caused by Lyme Disease. And, of course, I live in one of the Lyme Disease capitols of the world, so, he sure has the market available to him.

After this last visit, I am truly convinced of his sincerity and not wanting to take advantage of anyone. But, am just not certain his treatments actually do work. This is what he recommends for me:

1. 10 consecutive days of hyperbaric O2 treatments
2. Samento (Cat's Claw) Tincture
3. B-12 Methylcobalamin Injections
4. A product called Heavy Detox
5. Engystol
6. Colostrum
7. The Seasonal Rescue product (that I sent you the URL for)

CureOrBust wrote:
Minai wrote:but being the skeptic that I am about such things; my expectations are low

CureOrBust wrote:Personally, i think thik is the best way. If you get an improvement, its a bonus. I will be waiting to see your results, either way.


Although, just once i would love to get some placebo effect...


When I asked him to justify hyperbaric O2 treatments, he said that it would help lesions heal, ward off anaerobes, and help my anemia. Am open to this possibility. He also claims that it is a popular MS treatment in the UK. Not according to any of the searches I've done here, it isn't.

As far as B12 injections for my anemia goes; I test within mid-low normal ranges, but he does not accept the conventional standards. Another alternative doc, that I've consulted with over the past two years warns against high doses of B12. Because methylated or not, he claims that non-organic toxins that may be present in the body, get methylated into, 100 times more toxic, organic forms. So I told him, no on B12 injections. And, that I would just start taking the liquid chlorophyll, that my nurse-midwife's nutritionist had recommended, years ago. It had seemed to work, as it brought my lab values up high enough for what was required for the homebirth.

Have not agreed to taking any of the supplements he recommends, except the Samento. He claims that it will help prevent more viral replication of the EBV:

<shortened url>


Only one drop a day in a glass of water. Because he warns me that I'll herx from it, if I don't go slow with increasing the dosage. I will research some of those other supplements, tho. Maybe even try to find more suggestions on hyperbaric O2, as well.

Oh, and this doctor does not recommend antibiotic treatment, either. As usual, am left with lots more questions and few answers :?

Am just glad I get some partial insurance reimbursement for this alternative doctor, while I continuously attempt to figure out what to do.

Minai :)
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Postby CureOrBust » Fri Jul 14, 2006 1:51 am

Its interesting that he leans towards lyme, but reccomends against antibiotics; the normal treatment for lyme.

As for the hyperbaric o2 treatment, i have read that this is an effective lyme treatment. However, it has historically not been all that effective for ms.

There is someone here on these forumsm, that is trialling it personally.
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Postby Anecdote » Fri Jul 14, 2006 3:15 am

Hello Minai,

He believes that both MS and Autism are caused by Lyme Disease.

Really? Lesions cause by neuro-lyme are very similar to MS damage, but lyme disease is caused by a particular pathogen, as is MS but a different one, or ones. If treated properly, lyme disease can certainly be eradicated by antibiotics.

He also claims that it (hyperbaric oxygen) is a popular MS treatment in the UK. Not according to any of the searches I've done here, it isn't.

Some MS therapy centres here do have the treatment available but think the only thing it does is give the person doing it a sense of well-being, not help their MS symptoms.

If you have anaemia, you need iron supplements, if you have pernicious anaemia you need B12 injections, period.

Alternative doctors have there place, but there are times when you can't beat the real thing. I would suggest you read my husband's website and then write to him: http://www.davidwheldon.co.uk/ms-treatment.html One thing is for certain, CPn is very difficult to unearth and people often show negative when they are far from it. I was tested a couple of weeks after starting treatment, when antibody levels could have been expected to have risen, but he reading was the lowest possible and if I had been reliant on my GP for prescribing, she wouldn't have done it. I would be useless by now, since I was deteriorating so fast.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Minai » Fri Jul 14, 2006 8:26 pm

Hi CureOrBust,

I wish I'd had some time left with him to ask him the "whys" about why he doesn't prescribe antibiotics. Especially because he treats Lyme. Had also wanted to ask about LDN, too. By the time he had presented his protocol and answered questions about that, our time was up. I may e-mail him and ask him about these things, too.

What he had told me when he ordered a Western Blot (my third) was that he doesn't agree with interpretations as negative, if even one band comes back positive. That you either have it, or you don't. And, none of my bands have ever tested positive on any of the tests. Just have to think it if it's viral, it can only be EBV, based on those positive results.

Good to know about the hyperbaric O2 treatment. Had met some on a Lyme Disease forum, awhile back, who swore by it, too. Had never heard anything about it for MS, let alone that it's not effective. Will have to do another search for the person you are referring to using it, here.

Thanks,

Minai

CureOrBust wrote:Its interesting that he leans towards lyme, but reccomends against antibiotics; the normal treatment for lyme.

As for the hyperbaric o2 treatment, i have read that this is an effective lyme treatment. However, it has historically not been all that effective for ms.

There is someone here on these forumsm, that is trialling it personally.
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Postby Minai » Fri Jul 14, 2006 10:58 pm

Hi Sarah,

Your posts on this forum are some of the first that I began reading. Going back and reading all of them, and your husband's info on his website; have been on my "To Do" list for the longest time, now. And, I even recommended your posts and husband's site, in another forum/list. It was in response to someone, in the UK, who was looking for resources for his brother, there. It generated interest in others, as well.

Anyway, am so glad for your info and response!

Anecdote wrote:
He believes that both MS and Autism are caused by Lyme Disease.

Really? Lesions cause by neuro-lyme are very similar to MS damage, but lyme disease is caused by a particular pathogen, as is MS but a different one, or ones. If treated properly, lyme disease can certainly be eradicated by antibiotics.


As I posted to CureOrBust, I'm going to have to ask this doctor why he doesn't use it for treatment of Lyme. And, since I test so high for EBV antibodies, and negative for Lyme, that's why my priority, so far is anti-viral treatment. Will let you know what his response is.

Anecdote wrote:
He also claims that it (hyperbaric oxygen) is a popular MS treatment in the UK. Not according to any of the searches I've done here, it isn't.

Some MS therapy centres here do have the treatment available but think the only thing it does is give the person doing it a sense of well-being, not help their MS symptoms.


Am glad to know this. I mentioned to this doctor that my dentist had given me O-Zone therapy treatments, twice. The first time I felt nothing. The second time, I left feeling more energetic, but only for a few more hours.

Anecdote wrote:If you have anaemia, you need iron supplements, if you have pernicious anaemia you need B12 injections, period.


Have never tested positive for pernicious anemia, according to lab values. But, this doctor days that anyone testing in the high, or high normal mean cell volume has pernicious anemia. My family doctor disagrees, since my latest Iron and Iron Binding Capacity test results are all in mid-normal range. It's just this alternative doctor's opinion that I have it.


Anecdote wrote:Alternative doctors have there place, but there are times when you can't beat the real thing. I would suggest you read my husband's website and then write to him: http://www.davidwheldon.co.uk/ms-treatment.html One thing is for certain, CPn is very difficult to unearth and people often show negative when they are far from it. I was tested a couple of weeks after starting treatment, when antibody levels could have been expected to have risen, but he reading was the lowest possible and if I had been reliant on my GP for prescribing, she wouldn't have done it. I would be useless by now, since I was deteriorating so fast.
.

Agreed. And, will try to read more, soon. And ask questions. My latest blood test for chlamydia came back very low negative, too. And, I just got pap test results, from my family doctor, today. All swab tests, chlamydia, and otherwise, are negative, too.

And, it didn't occur to me, until just now, responding to your post...

Years ago, in a microbiology class, when studying sexually transmitted diseases; we were told that some of them hibernate (I think?) in tissue pouches, and might get out, again and re-infect. Or, something like that, anyway.

Maybe your husband knows and could provide more detail?

EBV is bad enough. Just hope there's nothing else.

Was also concerned by the recent wisdom teeth infection I had, that coincided with my relapse. Many symptoms around, and directly above it, on the same side of my head. Bell's Palsy, Labrynthitis, Sinus, Trigeminal Neuraligia. While one of the teeth showed minor, visible decay; none of the X-rays, or ultrasonic cavitat scans, revealed that I also had osteomyelitis in my jaw and that others were infected, too. It wasn't discovered until the dentist made his incision.

And, he was so horrified by what he found that he sent one of the teeth to a special lab that tests for anaerobes and their byproducts. Results came back as severely toxic. But since they are not standard tests, I don't fully understand them.

Since the surgeries that removed all four of my wisdom teeth were performed, four months ago; many of those symptoms are either gone or almost gone. However, am still hoping none are permanent.

Anaerobes, EBV, hope Chlamydia really isn't next :?

Will just have to study more, now.

Thanks, again, Sarah.

Minai :)
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Postby CureOrBust » Sat Jul 15, 2006 3:16 am

this is the thread regarding hyperbaric o2

http://www.thisisms.com/ftopicp-15226.html
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Postby Anecdote » Sat Jul 15, 2006 11:22 am

Quite honestly, what with his views on Lyme disease and pernicious anaemia, which is not the same thing at all as iron deficient anaemia, I would seriously think of changing your alternative GP.

Next, chlamydia pneumoniae is not a sexually transmitted disease. It is airborne and most people contract it first somewhere in their teens. If you read the appropriate page of David's website, you will find out about the life cycle of the pathogen and see why it is so hard to detect by most labs. Here is the "Questions and Answers" page: http://www.davidwheldon.co.uk/ms-cpn-qa.html I was nearly negative and probably had more antibodies to EBV: this is common, but I wasn't tested for it. I took antibiotics and I haven't had an MS event since. This would not have happened if my disease had been caused by EBV.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby jimmylegs » Sun Jul 16, 2006 2:49 am

ya isn't it renamed to chlamydophila pneumoniae? thought that might have something to do with changing the std perception?
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Postby Anecdote » Sun Jul 16, 2006 5:03 am

Certainly there has been an attempt to rename it, for that very reason, but I gave up using it because hardly anyone knew what you were talking about. Most papers now use "chamidophila" with "chlamydia" in brackets, but people in medicine as much as the general public are slow to change old habits. Look at how long it took to get the message across that most stomach ulcers were caused by H. pylori and could be easily treated by the appropriate antibiotics rather than surgery.

Sarah :?
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Minai » Sun Jul 16, 2006 7:08 pm

Anecdote wrote:Quite honestly, what with his views on Lyme disease and pernicious anaemia, which is not the same thing at all as iron deficient anaemia, I would seriously think of changing your alternative GP.


Hi Sarah,

I will, at least, keep this alternative doc "in my back pocket," so to speak, for now. While I may only choose to follow a fraction of his protocol; he's the only one around that I'm sure will write lab test orders when my GP or Neuro, won't. And, who knows, maybe I could actually talk him into ordering other meds, too, that they wouldn't. I don't think he'll refuse to see me, if I decide not to follow his protocol. Will certainly let you know what his responses are to my antibiotic questions.

Anecdote wrote:Next, chlamydia pneumoniae is not a sexually transmitted disease. It is airborne and most people contract it first somewhere in their teens. If you read the appropriate page of David's website, you will find out about the life cycle of the pathogen and see why it is so hard to detect by most labs. Here is the "Questions and Answers" page: http://www.davidwheldon.co.uk/ms-cpn-qa.html I was nearly negative and probably had more antibodies to EBV: this is common, but I wasn't tested for it. I took antibiotics and I haven't had an MS event since. This would not have happened if my disease had been caused by EBV.


Thanks. Have been away all weekend, but will start reading, first chance that I have.

Minai :)
Last edited by Minai on Sun Jul 16, 2006 7:21 pm, edited 1 time in total.
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Postby Minai » Sun Jul 16, 2006 7:20 pm

Anecdote wrote:Certainly there has been an attempt to rename it, for that very reason, but I gave up using it because hardly anyone knew what you were talking about. Most papers now use "chamidophila" with "chlamydia" in brackets, but people in medicine as much as the general public are slow to change old habits. Look at how long it took to get the message across that most stomach ulcers were caused by H. pylori and could be easily treated by the appropriate antibiotics rather than surgery.

Sarah :?


OK, so, my negative pap test results were just for chlamydia trachomatis, not pneumoniae.

http://www.cdc.gov/std/Chlamydia/STDFact-Chlamydia.htm

But my negative blood test results were for all three chlamydia bacterium strains-pneumoniae, trachomatis, and psittaci.

Minai
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Postby Anecdote » Sun Jul 16, 2006 11:15 pm

I thought the pap test would be for c trach because you don't do that for c pn, however, as I said, blood tests for c pn are often negative, like mine, when they weren't at all. Very few places can do it properly.


Get reading!

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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