Need Advice Fast, Please.

Shaka · Post by **Shaka** » Mon Aug 17, 2009 8:43 am

I just went out East and My Nuero found a 2 year old test that was Positive for CPN, he put me on the Stratton/Vanderbelt protocol . I have always taken antibiotics in the past for Lyme and they have definitly helped my MS.

Well he retested the CPN and it came back negative. With no written recomendation of what to do. Can the tests be wrong sometimes? I go see my Local PCP today and am not very happy with the info I got from other Dr to give her. I wonder if I should just not give her the test results until I get a phone appt. next Monday with out of town DR. To see if I can still treat CPN. So Confused.

The only recommendation he gave is that I need aggressive antivirals for Herpes?

notasperfectasyou · Post by **notasperfectasyou** » Mon Aug 17, 2009 8:51 am

Do you know what lab your tests were done at? Some labs are better than others, but given the nature of the stuff I doubt that it just "went away". The tests are not the best indicator, like any test you can get a false negative or false positive. But, if your body has reacted to antibiotics, that's a pretty good indicator. Ken

Shaka · Post by **Shaka** » Mon Aug 17, 2009 9:07 am

MDL labs did both tests. This one is a PCR and it says negative. Do you suggest any Labs.

robbie · Post by **robbie** » Mon Aug 17, 2009 11:00 am

I have always taken antibiotics in the past for Lyme and they have definitly helped my MS.

hi Shaka do you have Lyme and ms?

notasperfectasyou · Post by **notasperfectasyou** » Mon Aug 17, 2009 11:12 am

Here is a really good thread about this topic: Shouldn't we encourage testing / test for CPn Antibodies?

robbie · Post by **robbie** » Mon Aug 17, 2009 12:03 pm

is cpn the same as lyme?

Shaka · Post by **Shaka** » Mon Aug 17, 2009 4:09 pm

Yes I have tested CDC Positive for Lyme 8 times. Doctors here in Oregon don't believe I have Lyme though only MS. I also tested positive for Clamydia Pneamonea(CPN) 2 years ago. I truly believe antibiotics make my MS go away.

I am a walking germ factory of things some believe cause MS.

duncan1 · Post by **duncan1** » Mon Aug 17, 2009 5:21 pm

Shaka wrote:Yes I have tested CDC Positive for Lyme 8 times. Doctors here in Oregon don't believe I have Lyme though only MS. I also tested positive for Clamydia Pneamonea 2 years ago. I truly believe antibiotics make my MS go away.

I am a walking germ factory of things some believe cause MS.

Lyme Disease does exist in Oregon:

http://www.pubmedcentral.nih.gov/articl ... d=18448697

This article gives incidence maps. In many areas of Oregon the incidence is low because the tick responsible prefers to feed on the Western Fence lizard, whose blood destroys the Lyme borrellia, but in other areas the incidence is much higher.

duncan1 · Post by **duncan1** » Mon Aug 17, 2009 5:23 pm

robbie wrote:is cpn the same as lyme?

CPN is a much different organism. Lyme Disease is spread exclusively through the bite of infected ticks.

robbie · Post by **robbie** » Tue Aug 18, 2009 5:35 am

I truly believe antibiotics make my MS go away.

thanks Shaka that sounds really good, i am starting doxy asap. as for your first question i wouldn't worry so much about the testing, if the antibiotics help you so much just take them.

CPN is a much different organism. Lyme Disease is spread exclusively through the bite of infected ticks.

would the two be treated pretty much the same though?

SarahLonglands · Post by **SarahLonglands** » Tue Aug 18, 2009 5:52 am

In the UK lyme can be treated in just the same way as Cpn: a different organism but these are broad based antibiotics. Chlamydia pnuemoniae is very hard to test for accurately. When I was tested it came back as only 1:64 yet I responded to doxycycline within a few hours. Lucky I am married to a doctor whose specialty is microbiology but has also studied neurology because nobody else would have treated me with that reading.

Sarah

Shaka · Post by **Shaka** » Tue Aug 18, 2009 11:13 am

I cancelled my Local Dr Appointment. I am not ready to go in there with negative tests and put up a fight. I talk to the Dr out east next week and hopefully he still suggests treating with Antibiotics. I like the protocol I am on but would love to add IV antibiotics for the Lyme one more time.

I think the IVs really helped me last time. Oh I hope this all works out. I have been fighting with Oregon Drs about Lyme and MS for 5 years I am sick of it. I can't wait to say CPN to my Nuero she's gonna love that. The last time I saw my Nuero out East my Local Nuero fired me when he read his report.

She is the last Nuero in 100 miles I must be careful what I say,

Shaka · Post by **Shaka** » Tue Aug 18, 2009 11:24 am

I forgot to comment on the Part where Oregon does not have Lyme. It is a ridiculus statement Drs here love to say.

I had so many Positive tests the CDC called me and asked me where I thought I got my Lyme from Local or Out of State. I believe it was right here in Central oregon.

I said I have Lyme really because my Drs won't give me antibiotics. She called my Nuero and explained to him what the treatment was. So I am a confermed Lyme Case in Oregon in I think in 2005. But all that gets you is Doxy for 30 days.

That is not near enough once it is all Nuerological my symptoms are completely typical for MS, I just think bacteria causes it . Maybe one day I will find a local Dr that agrees.

Flying 3000 miles for Antibiotics is not fair in my opinion.

I will stop ranting now, I have been a little edgy lately.

Thank you for all the advise.

agatha · Post by **agatha** » Wed Aug 19, 2009 9:23 am

Rant all you like Shaka - we all know that frustrated feeling.

SarahLonglands · Post by **SarahLonglands** » Wed Aug 19, 2009 10:00 am

Shaka, whereabouts in Oregon do you live? There is a doctor in Sacramento who might be able to see you. I'll PM you the details. It might be a distance, but nothing like 3000 miles!

Sarah