Who are the viral experts, here?

[CureOrBust]

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.

[SarahLonglands]

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

[Minai]

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

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.

[Minai]

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!

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.

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.

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.

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

[CureOrBust]

this is the thread regarding hyperbaric o2

http://www.thisisms.com/ftopicp-15226.html

[SarahLonglands]

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

[SarahLonglands]

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

[Minai]

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.

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

[Minai]

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

[SarahLonglands]

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