Hey clammed_up,  You write like you imagine CDC-positive Lyme is a subcategory of Lyme Disease.  In your post, you wrote "For those with cdc pos lyme I do believe that cpni [1] comes with the terratory because lyme would be the exisiting inflamation that cpn thrives on [.]"  Where are these ideas coming from?  Granted, your statement is a possibility, but I'm unfamiliar with any literature that would indicate that anyone should take it as the understood fact you seem to believe it to be. 

If you haven't already studied the significance of the different bands on the Western Blot, it might be a good idea to have a look at literature that explains their meaning in detail.  Then, make up your own mind.  Some bands are common with other bacteria, but some are specific to Borrelia.  In the case of the bands that are specific to Borrelia, if you are positive for those bands (or even just equivocal), only you can decide.  Unless you want even more testing to prove the point, you might think of the Borrelia-specific results in terms similar to these:  a little bit pregnant = pregnant, a little bit Cpn-ish = Cpn-ish, a little bit Lymie = Lymie. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [11]).  CAPi [12] since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBVi [13], CMV & other herpes family viral infectionsi [14], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [11]).  CAPi [12] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [13], CMV & other herpes family viral infectionsi [14], elevated heavy metals, gluten+casein sensitivity. 

Okay, I admit the testing specifics are over my head. I was on antibiotics before being tested and it took a year before I even remembered to call that first doctor to find out the results, which were 'positive for cpni [1]' (no details). I never asked to see the tests or the numbers or anything at that point, since abxi [15] had made me so much better, I no longer cared. But, since this protocol applies to both Lyme and cpn, why not just do Wheldon's protocol and kill whichever one you have?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I am one of the apparently lucky few who test CDC positive for Lyme on the Western Blot test.  It was such a relief to have that kind of diagnostic confirmation, for insurance reasons alone.  Many Lymies I know don't have that luxury. 

I also just learned about the existence of Cpni [1] from my Lyme support group buddies.  I tested positive like 5 others in my group.  However, there is a Lyme doc in our area now testing her Lyme patients for Cpn and she hasn't found another positive result yet after a few months of searching the last I heard.  This is puzzling, but perhaps there is just a subset of folks with both infectionsi [14].  There are a whole host of other infections many people test positive for that I'm learning about as well, including bartonella, erlichia, mycoplasma, babesia, HHV6, EBVi [13], cytomegliovirus, morgellons, and I'm betting there are more that haven't even been recognized or named yet.

I agree with MacKintosh.  Does it matter too much in the end from the patient's perspective what it's called if the same CAPi [12] protocolsi [16] go after it?  Perhaps it matters to researchers, but less to me as a patient.  Just get us all better!

Marysia

 

CDC Lyme Western Blot positive 02/06, two years slow up and down improvement on variations of CAP. Currently halted in treatment after an apparent severe porphyriai [17] attack with lasting damage seven months ago. Trying to understand porphyria in order to resume treatment more safely. Taking all supplementsi [18] recommended on cpnhelp.org [19] and finding them helpful.

cypriane,

Ive read about the bands long ago and the vaccine and the controversy too. Ive been trying to confirm lyme for about 15 years and all I ever get is cpni [1] and active hv-1. However if some bands are lyme specific...my question is, how is this "specific" idea proven to be absolutely correct? How do they " know" that these bands are " lyme specific" . Im not saying I dont think the system of lyme testing is seriously corrupt, in fact based on my readings regarding the vaccine and its relation to the bands not used for testing, it is absolutly corrupt. Im not saying that some people who are only igenex positive dont have lyme... all Im saying is that I think some dr's get on the lyme  bandwagon a little to quickly without considering whether cpn can cause the exact same kind of damage, as well as the fact that there are all kinds of other chronic infectionsi [14] out there.

For example, I have active hv-1 and cpn, therfore if cpn is taking up my immunei [3] system, how can it hold the hv-1 at bay? Add a hit to the face with that where the hv-1 gets to spread into the triageminal nerve and you have a facial and cranial neuralgia that fully resembles lyme. Plus there are so many other viruses that can get out of check with an intracellulari [21] infection such as cpn...

Anyway, Im not discrediting lyme dx. My best friend has it and although we disagree on our opinions neither of us considers it disrespect to each other to have differing opinions. She likes her doctor and I like mine

And i guess in the long run its like the other two posters say... its the same treatment anyway. Its just that I'd like to know exactly what Im dealing with so I will know how to deal with the hv-1 virus as well because I believe its part of the problem ( the result of cpn)...

I think about the future, when Im all better and the hv-1 has gone into remission as it did last time. What if im exposed to cpn again, will the hv1 re-activate? I'd just like to know what im dealing with and not just assume that I have "lyme" and that a few years of abxi [15] are going to make me all better. I cant do that, I cant afford to do that.

And in regards to the lyme and cpn co-existing, that was a common sense statement. If a person is suffering with lyme disease, why wouldnt they be extremely vulnerable to an intracellular infection that thrives off inflamation?

I have suffered a very very long time, and I live in canada where good help = about 7 dr's in the entire country. I have read until my eyes have bled and ive been sick for as long as these ilads dr's have been in business. I feel I have a right to an opinion simply because Ive been tackling this for as long as they have. And as I already mentioned, Im fully open to being wrong.

Also, just wanted to mention 1 thing,  to my knowlege, lyme and cpn are not exactly the same treatment because lyme treatment doesnt use naci [22] or penicillinase ( to my knowlege anyway )which prevents cpn reoccurance, therfore if someone was dx's with just lyme and actually had cpn and wasnt treated for that, they might  never fully recover. 

 

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CPNi [1] pcri [4] and antibody positive , treating MSi [5], CFSi [2], TMJ, trigeminal neuralgia, IBSi [6] neutropenia, pus found in facial bone, Doxyi [7] 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi [8] pulses each month.

clammed_up, 

It seems to me that you and I are in accord to a great degree.  Again, I agree that the co-existence of Lyme and Cpni [1] is a possibility.  There are several users on this site with both infectionsi [14], and in fact, it's something I go home to every night.  I suppose our greatest difference on this subject might be in our individual interpretations of what the words "a" and "the" mean.  Exposure to the various portfolios of infection found on this website discourages me from thinking in absolute, known-for-sure, black-and-white terms.  Not only that, in the different users' stories here, new infections are revealed over time, rather like peeling an onion.  It was difficult for me to learn to accept that my husband's health was being controlled by a mixed bag of the known, the suspected, the unknown, and the unknowable.  It aggravated me, frustrated me, and drained me until I accepted that, in this microcosm, that mixed bag is a collective force of enemies that we must continually struggle to discover, to know, and to defeat.  I'm a control-freak, and I would guess that you are too.  I'd like a rest from grappling with the enemies I know, much less the enemies I don't know, but I don't see a break on the horizon.

I'm in complete agreement with you on the existence of a Lyme "bandwagon," and I'll go further to say that the Lyme mindset can be so extreme it's almost rabid.  There is such resolve in much of the Lyme community as to the absoluteness of Lyme being the actuality behind too many illnesses, it turns me off.  Even so, I suspect that co-infection of Lyme and Cpn is more common than generally thought.

We also agree that Lyme treatment and Cpn treatment are not exactly the same.  That holds true from doctor to doctor, from clinic to hospital, from patient to patient.  Both treatments are evolving on a continuous basis along separate and even multiple lines.  The changeability of the treatments for these infections, the newness, the lack of support from the mainstream evidence-based medicine types...it's an edgy place to be.  Being really angry helps for awhile.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [11]).  CAPi [12] since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBVi [13], CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [11]).  CAPi [12] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [13], CMV & other herpes family viral infectionsi [14], elevated heavy metals, gluten+casein sensitivity. 

Sometimes I think alot of the problem with my case was that I missed the bandwagon in a different way...I feel I missed it because I came along before it drove by. I guess what i mean is that I was crying candida back when my EI dr was discovering allergies, then I was crying lyme as he was discovering candida, and when he finally began treating lyme patients, I discovered I had discovered C. pneumoniae with absolute proof. CPni [1] fit all the things that lyme diddent, it fit in all the places where this dr ridiculed me and made me feel foolish for ever concieving. When I gave him my CPn confirmation he told me i had lyme and didnt even look at the cpn test result paper. He went and put all his sickest patients who he felt had lyme on intervenous abxi [15] and when it came to me who was his oldest patient of them all he refused. I told him that if he felt i have lyme then I want to be on IV like the others especially since ive had it so long. He felt confident enough to yell lyme at me yet not confident enough to put me on IV like he did with the others. It makes me sick to be honest because i was willing to trust his dx of lyme even though i disagreed with it as long as he was willing to put me on IV like the others. Here i was his oldest patient, the one who suffered the longest and there he was diagnosing everyone else, putting everyone on IV and leaving me to suffer. I couldnt even eat more than 15 foods at that time let alone tolerate oral abxi [24].

Anyway, so yes, I have alot of anger and it wrestles with me because it boils down to trusting my gut vs trusting his expertise and that i made the choice to trust my gut.

I told my friend yesterday that I actually hope that when the urine test comes back it confirms lyme because its worse to always live wondering the real answer and especially even more so if i almost fully recover and then relapse again.

Anyway, it seems like you really understand the feelings Im going through. You know, even when i first discovered cpn and the vanderbilt studdies, there was no where near as much info as there is now. Im hoping that the incedent with my old dr was a time stalling fate.. a fate that brought me to this point here instead.... ( where i feel educated enough and there is enough research available to do this treatment instead... the right way)

My lyme result comes back next friday, and my cpn as well but as i mentioned before the cpn might be negative because of the abx i took last month... although i still feel that it will be positive for cpn for some reason.

I get what you mean by the way about the words The and A... I can see how that could be interpreted in different ways.

I guess many of us whether we are patient or caregiver live in the unknown, its terrorizing to be honest not knowing whether or not we are curable. All we know is that abx make us feel better.... that is scarey, really scarey, especially when cause and effect is so clearly obvious as in my case and how i respond to abx. 

Anyway, all the best to you, yours, and all

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CPNi [1] pcri [4] and antibody positive , treating MSi [5], CFSi [2], TMJ, trigeminal neuralgia, IBSi [6] neutropenia, pus found in facial bone, Doxyi [7] 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi [8] pulses each month.