Cpnhelp.org

Hello Brown...I guess I will be one of the first to jump in here; BUT.. a CD57 count of 39 is a good indicator of chronic Lyme... If you have not had an Igenex Test they are well worth the $$'s spent to find out for sure what is going on and you should definitely be tested for the co-infections.  The fact you have low DHEA, iron, etc.  are other possible indicators.Viruses are usually opportunistic when one has Lyme bacterial infections.....I don't know if your doctor is an "LLMD" and a member of the ILADS but if he is not I would definitely seek one out.  A few weeks of ABX will not get you well... nor will this protocol IF YOU HAVE LYME AND COINFECTIONS. The dosages of the ABX here are not bactericidal for B. bergdorferi or any of the con-infections.I say this not to negate this site, but rather to encourage you to be sure you do the best you can to conclude via testing and/or clinical diagnosis (by an experienced LLMD) whether or not you have Lyme and coinfections.   When one speaks of "Lyme Disease" it is usually not just Lyme;i.e. borellia bergdorferii.... usually co-infections such as bartonella, babesia, ehrlichia, CPN, (yes CPN is considered a co-infection)This site was a godsend for me about 5 years ago... because I thought (and was told) I did not have Lyme.  I treated for CPN and never got well... BECAUSE I have Lyme and co-infections. I knew something was not right when my CPN titres went to normal (IgA and IgM)  and I was still not getting better.  I stopped ABX and lost my ability to walk and started going down hill (again).There are others here who have similar stories.  Just an enouragement to not become discouraged, give up and to seek out all possible answers to your health problems.I definitely would encourage you to seek out an LLMD who is trained.  They can make a diagnosis.       

Welcome Brown,I agree that the CD-57 of 39 is significant.  Mine was 33 on first testing, about 4 months into my treatment with doxy.   It would be good before you do the Igenex testing to take a course of "kill level Doxi" (200mg twice a day) for three or four weeks prior to testing, to increase the odds of testing positive, false negative are all to common.   As Lyme over time begins to be ignored by the immune system and doing a test treatment of doxi will expose it to the immune system and increase the odds that it will be seen by your immune system and record the bands on your test as positive.   This is how I was found to have Lyme ( Borrelia) as part of my profile. C.Pn. is extremely common in the general population and often found with other persistent cellular infection or alone as the major player.    With the persistent bacterial infections there is a lot of mutual sensitivity to to the CAP meds.   Viruses are another thing but some folks find that getting at the bacterial chronic infections allows the viruses to be controlled by the immune system.  Others find that they need viral treatments.I too never had any of the clear indicators of Borellia B. although I questioned it before I found treatment based on my chronic symptoms.Louise 

It is well worth considering CPn as well as Lyme. At the recent ILADS conference in Toronto, several os the spreakers made reference to CPn as being a significant co-existing infection for those seriously ill with Lyme Disease complex illness. It rather worried me that the Lyme Disease doctors did not actually grasp the entirity of the Cpn issue and the need to address all 3 forms, just as with Lyme..... but it is a start.It was also mentioned that a low CD57...whilst previously been given attributed to Lyme....is now being associated with other infections, including CPn.For me it took 10 years of illness before I was diagnosed with Lyme ( + Igenex ) and started treatment with an excellent LLMD. 5 years it took to figure out that the persistant symptoms were, in fact, due to CPn, and the massive 'Herx' reactions that I had had that nothing seemed to help, were actually secondary porphyria.If you have Lyme AND CPn, then the standard doses given for Lyme are massive compared to those used for CPN, and the lack of NAC will entirley miss the RB form, allowing the organism to surve blissfully in the midst of the antibiotic onslaught. End result is that you feel ghastly and wish to die and don't get better.Having said that, the blood tests for CPn are not that reliable, just as for Lyme. Find a LLMD who is CPn aware, and willing to treat on clinical grounds.

How on earth can a CD57 count (a measure of the immune system) be specific for one particular disease?  I know Lyme doctors say that, but it doesn't make any sense, and I think they're just looking for an excuse to give antibiotics.  CD57 may be a reasonable marker for a disease that's likely to respond to antibiotics, but if so they should describe it that way, not simply as 'Lyme'.

Thank you everyone for your responses.The Lyme doctor I referred to is a DO and member of ILADS.  His name was one of a handful in my state that were sent to me by one of the Lyme sites (I forget which one), and the one recommended by both the naturopath and regular MD I see at an integrative health center.  He's supposed to be the expert in my area (geographical), so I'm hoping for the best but not taking it for granted that he knows everything and thus trying to arm myself with information.I already had an Igenex Lyme test without antibiotics and am waiting for the results, but it sounds as though I am a good candidate for an antibiotic trial even if I get a negative.Annelet:  What tipped you off to Cpn as the source of your continuing symptoms?  Did you ever get a positive test or was it the secondary porphyria that gave it away? I read somewhere what you said about CD57 not being as Lyme-specific as once thought, I think Cpn was mentioned specifically (Norman:  I had  the same thought you did when I got the CD57 result in the mail and did a frantic google search....I didn't want to have Lyme, but it does seem to be pointing in the direction of chronic infection(s)).If you have both, do you treat with the lower doses of abx first?  Also, does taking abx for 3-4 weeks change the likelihood of a positive Cpn test in the same way that it can affect Lyme testing?One interesting piece that I forgot to mention in my first post:Several months into my brain symptoms I was misdiagnosed with heavy metal toxicity and took a 'detox' supplement that worsened my symptoms.  My metal levels were actually fairly low but a medical intuitive healer (for lack of a better term) told me that was really my problem and I went along with it because she was the only practitioner who seemed to care at the time.  I had mind-scrambling brain fog,  awful depression, really felt like my brain was being poisoned at times, might have felt somewhat better afterwards but also developed new symptoms like sinus trouble (which mostly resolved several months after stopping the supplement), and after I ditched the medical intuitive and the heavy metals theory it was still a disturbing mystery as to why I felt so awful and nuts, since the pills weren't even a chelating agent but a supposedly gentle liver support.  In my Lyme research I found that one of the ingredients, andrographis, is often used for treating Lyme, and I can't help wondering if I was actually experiencing a die-off reaction.  Is there a place on this site where I can find instructions on how to do an NAC test? Thanks again everyone. 

Yes, Brown, and welcome.The "test" is to take 1200 mg of NAC twice a day.  If you develop sniffles, muscle aches, or flu-like symptoms, that is a passing grade.  But a failing grade doesn't mean you pass, either.  (Obviously, I'm being silly.)  But if you go to David Wheldon's papers here you will find it perfectly described.  As a matter of fact, someone very recently put a link in a comment.Rica

Thanks, Rica.  I'll check out the papers.-Brown

The things that 'tipped me off' about CPn were a combination of symptoms, history and response to treatment. My perststant symptoms were; feeling flu-ish with a persistant bunged-up head feeling, as if I weere getting a cold but I NEVER had to blow my nose, sore chest and dry cough. Plus pins and needles, aching joints, twitching muscles.I know for sure I had Lyme.... knew the day it started, though I never recall a tick bite  nor had a Bulls Eye rash........ but when I looked back before that, I had regular twice a year infections that started in my nose/sinuses and proceeded back down my throat, to pharyngitis, laryngitis and ended up with a productive cough. Typically the whole cycle lasted around 2-3 weeks and then I was OK apart from fatigue. I started getting bad Tonsillitis, which ended up with my having my tonsills removed in my late 30's and just after that I had my one and only ever bout of sinusitis, where I was blowing out bucket loads of snow ( OK... I am exaggerating ! )This infection was obviously getting a hold.... but I didn't realise it at the time. It was also when I was renovating an old house and becoming Lead toxic, and I had undiagnosed Hemochromatosis...causing high iron levels..... both things affecting my immune systems ability to hold the CPn in check. The I got Lyme and went downhill rapidly.I did get tested for CPN, but at that point I had already been on abx for a while, and the test was negative. I believed that my Lyme abx would cover any CPn, which they would, but I missed out the NAC almost completely.I did the NAC test about a year ago.....and my nose is still running like crazy !! For me it was a very definite result, though every so ofeten I stop for a few days and start again just to convince myself anew.Take a look at the whole picture of your life and illness. For people with Lyme and CPn, maybe they already have the CPN on board, but the Lyme onslaught allows the CPn to get a more damaging hold.Also well worth looking into is the association of infection and KPU.

You can consider looking this site over:  http://chronicfatigue.stanford.edu/Start here:  http://chronicfatigue.stanford.edu/overview/diagnosis.htmlBest, Timaca

Norman, Yes it does appear to present like porphyria and possible methylation issues.  The article linked by Dr. Klinghardt is very good and lists the supplement/protocol to get it functioning again.So now we have genetic (or inherited) porphyria, ABX induced porphyria, genetic methylation issues, KPU issues linked to mineral difficiencies... geesh anything else in that loop or do you view them as one in the same?  I've googled "what is the difference between hemopyrrollactamuria (HPU),  and porphyria?" and didn't really get an explanation between the two.

Porphyria can have many variants and one of them is when pyrrol synthesis is out of control. Pyrrols are later transformed to porphyrins.I am not sure it is the exact same thing as secondary porphyria from cpn. I did not find much info about this.

They talk of this KPU or HPU as if it's something other than porphyria, but I don't think they've researched it well enough to be able to tell the difference. Mainstream researchers, who have the labs and the money to really figure this stuff out, don't seem to be interested; to them it's at best a sideshow. Which some of it might be; the mineral deficiency stuff, for instance, could just be an unrelated issue, with people who have this porphyria also happening to have something else that causes mineral deficiencies (or for some reason happening to have a bad diet). With every source recommending a slightly different list of supplements to fix "KPU", it's not like this stuff has to be taken as gospel truth.In any case, as regards genetic porphyria versus Cpn-caused porphyria, it's not an either-or thing, but an additive effect: any genetic flaws you have in your enzymes for building heme will be exposed when the system comes under stress from Cpn.

No... KPU is different to Porphyria, but related.It is due to a defect in Heme production.  Pyrroles are a 'normal' by product of Heme synthesis and in ' normal' people they are produced in such small amounts that they are insignificant. However, in some people who are geneticallly disposed they are produced in very large amounts.Pyrroles by themselves are harmless and peed out in the urine BUT they have a very strong affinity to 'Aldehyde' molecules....the main one in the body being Vitamin B6. Together the Pyrrole+B6 has a strong affinity for Zinc.The end result is that the Pyrroles are excreted in the pee along with LARGE amounts of Zinc and B6 predominantly, and also other things such as B3, Arachnadoic Acid and manganese. The Zinc depletion can be severe and serious. Zinc is involved in around 300 enzyme actions and has a significant role in immune function. B6 and Arachnidoic Acid are key in the production and regulation of Neurotransmitters. The very low Zinc produces a secondary, paradoxical high level of Copper, which can reach toxic levels and have its own effect on mood and immune function.The Kryptopyrrole and Hemopyrolactam compounds can be measured in the urine.http://www.kryptopyrrole.com/Testing is difficult, as it is for other Pyrolles...... you have to collect the sample in the dark, protect it from light, freeze it, send on ice, and the sample has to be tested immediately it arrives at the lab.Severe chronic infections and heavy metal toxicity can activate this. Most of the attention has been as regards Lyme and co-infections, but I don't see why CPn would not do this as well, particularly as it is known that Cpn interferes with another part of the Heme pathway.I developed KPU secondary to Lyme/Cpn/Lead toxicity. My KPU test was just under a positive, but I had sent it before I knew how to send the test "properly" and the sample was not tested for 5 days. The half life of the Pyrroles is around 12 hours.I started Zinc, B6 and Evening Primrose Oil. The effect of the Zinc is immediate.... it's like my immune system is switched on again and functioning. I feel as if I am fighting infection in a healthy way like I used to, and not just letting the bugs simmer and remain unchallenged ! 

Most of the research with Pyrrole Disorder has been in connection with Orthomolecular Medicine and Neuropsychiatric illnesses. There is a substantial body of research that supports this as a seperate condition and many people whose lives have been transformed.http://www.biobalance.org.au/_downloads/discerning-mauve-factor-part-1-… and HPL can be measured quantitatively in the lab. In addition, serum Zinc, Copper and Ceruloplasmin levels will aid in the diagnosis, and can be used to monitor treatment.This is far more than something that "they" talk about, Norman.Sadly, there will not be large amounts of money invested in further investigation and education, because the drug companies have nothing to gain..... the 'cure' already exists in the local Walmart, and it is cheap. 

When I said that they didn't have much, I was subtracting off all the stuff that was said without any evidence.  If you want to state flatly that all these various things get bound to KPU or HPL and thereby excreted, let's see some pointers to experiments that determined binding coefficients. Because otherwise it's just a hypothesis, not a proven fact. And there are plenty of alternative hypotheses; the improvements seen with B6 supplementation, for instance, might be due to the fact that B6 is a required cofactor in the production of heme.  Supplementing it might boost the production enough to make up for deficiencies elsewhere in the chain.And an excess of anything that builds up due to a defect in heme production is pretty much by definition porphyria.  (There are many types of porphyria.)  The first paper you linked to ("Discerning the Mauve Factor..") even talks about HPL as being a chemical that is elevated in one type of porphyria ("acute intermittent porphyria").

By the way, I'm not trying to pooh-pooh this stuff.  If this "KPU" is the same sort of porphyria that we encounter in Cpn treatment, then supplements which have been found to work well for it (like B6) should be added to the list of things we recommend for porphyria.

Thanks again everyone for the additional information and interesting discussion.I got my Lyme results back and they were negative by Igenex standards but with a note to retest based on one of the positive bands (IGG 30+,41+,39 IND, IGM 41 IND).I know that a negative result doesn't mean that I don't have a Borrelia infection or something else, but I don't know how the Lyme doctor will interpret my results, and I see him later this week, so I'm feeling apprehensive. I wanted to do the NAC test before my appointment but I got sick with a cold right when I was planning on doing it, and I'm afraid of making myself sick again right when I need to be preparing for meeting with the doctor so I might hold off. My virus tests were negative except for the CMV, which was positive but then with an addendum stating that there was an accident in the lab that day and the corrected result was....(blank space where a number should have been). Whatever.While rooting around in this forum I found an interesting old thread discussing the nature of this site and whether it's more of a Cpn site or a CAP site, which was something I'd been wondering about.  I don't want to stir up trouble and I imaginine everyone thinks differently on this, but I mention it because I'm someone who's very possibly looking at a chronic infection(s) and interested in a CAP of some kind, and this is the only site I've found with a depth of well-organized knowledge on the topic. I know that one CAP doesn't fit all bugs, so do those of you with Lyme find what you need here, or is there a good Lyme site you recommend?  I took a look at Lyme.net and it was hard to navigate and very depressing (I really feel for people who are struggling-- I struggle too-- but there's a dark cloud over the Lyme place, maybe because of the awful politics surrounding it, and I don't feel that here). The LymeMD blog is fascinating but it's one man's blog, not a real forum.Any advice on how I might move forward is appreciated.Brown 

Hello Brown: Well, again i don't want to negate the good information, support and advice from this site; BUT, I will say, that had I not brainwashed myself into believing  that all I had was CPN and HH-V and EBV and this protocol would make me well, I may be farther along in my healing path. I treated for 4 years and did not get well...  (I did, though, bring down my IgA and IgM CPN titres to normal during this treatment -- IgG still high)Firstly, the fact that you have THE 41 band positive is most indicative of having spirochetes in you... Secondly, diagnosis of Lyme and co-infections can not be totally dependent on tests (including the Igenex).  You need an LLMD who is really trained in the ILADS method of treatment and is current.  I can email you a list of doctors if you PM with your location.The fact you have this positive band is a good indicator you DO have Lyme contrary to how your doctor is interpreting it!   Also, were you tested for co-infections? (Bartonella, Babesia, Erlichia, etc.?)If you have Lyme and co-infections (and most do) you HAVE to treat at higher doses of the doxy than is recommended for CPN. If you have co-infections this protocol WILL NOT irradicate them.Take care of the Lyme and co's first... it will knock down some of your cpn load, but you'll not get well if you don't address the Lyme and co's and go for the lower doses of combination ABX.Yes, the whole "lyme" arena is a political nightmare.... so unfortunate.  I do find the lymenet.org site good for gleaning information and posting questions.  Just takes some time to learn to navigate there.      

Jeanneroz, thanks for the tips. I'm sorry you went so long before figuring out what was wrong, and I feel like I've done the same thing with other diagnoses that have turned out to be wrong or incomplete.  When you really get down to it, the symptoms for all of these diseases aren't that different, so of course we stumble along.It so happens that I met with the Lyme doc today and I've been given a treatment plan for Lyme.  The interpretation of my results as negative was the Igenex view (they require 2 or more of certain bands), with the note that I should retest based on the positive band. My doctor seems to think that with the low CD57 and negative Lyme (or weakly positive, depending on how you look at it), plus all negative virus tests, I'm likely immunosuppressed and just not producing antibodies that show up, so we're going ahead with 100 mg doxy x2, plus resveratrol and some herbal blend based on Chinese medicine.  I'm already taking all of the vitamins/minerals and oils listed in the supplement recommendations here, so I'm hoping that has prepared me somewhat and will hold me in good stead.I haven't tested for co-infections but I figure I will at some point, maybe the antibiotics will make something show up if it's there.  I'm trying to keep an open mind, knowing I probably don't have just one pathogen causing my problems, but I need an action plan and feel like I got one today.I forgot to ask about Cpn testing at my appt. (or at least the possibility of having it) today, but I will bring it up at a future appointment.I think I have a knowledgeable doctor, and I sort of need to take a break from over-researching and second-guessing whatever the doctor prescribes (I'm good at that), but I will Pm my location and you can send me whatever list of providers you have....I'm always gathering new info and there might be someone on your list that wasn't on the first one I saw (I believe it was from Turn the Corner?)  Thanks-Brown 

Brown sounds like you are well set for the moment.   I'll be interested in the treatment plan should you choose to share it here.  Please keep us informed!Louise