27 Apr 2018

Help greatly appreciated - new to cpn and forum (dx)


Hello all, I am new to this forum and a bit confused about many things relating to cpn.A little back story: I am 25 years old and was diagnosed with Lyme disease two years ago and have been on and off antibiotic treatment since then. I recently was experiencing some chest tightness and a dry cough and my Lyme doctor tested me for mycoplasma pneumonia and chlamydia pneumonia. Both tests came back positive. I am currently taking zithromax (250mg 2xday), malarone, and bicillin injections for lyme.


Welcome  to the site, Ross.   Your best bet is to  go to the tab at the top, "Getting Started".  In short, this is a 'stealth' pathogen, which hides inside the cells.  This is the reason   blood tests often miss  the infection.   If your body doesn't know cpn bacteria is there (because it's in hiding within the cells), your body won't make antibodies to it.  No antibodies means negative test results.  It can be frustrating. Your positive results happened after  your body was challenged by antibiotic treatment, which probably released some  of the  cpn into your system.    Several people here have noticed the same thing happened to them.Azithromycin alone will not cure you of cpn.   We do a combined antibiotic protocol, usually comprised of doxycycline,  azithromycin and intermittent use of a nidazole (either metronidazole or tinidazole) .    The use of multiple abx at the same time serves to stave off   resistance.  What you can do is make sure your vitamin D levels   stay healthy .  You can supplement with D3   and you should probably  look into N Acetyl Cysteine,  which will help your liver function efficiently  through treatment, as well as  begin to address your cpn infection.There's a LOT to read on this site.  The patient handbook tab will  prove  it.  ;-)  And, if your doctor is interested in  learning about and/or treating cpn,  there's a ton of research available under 'physician pages'.     When you've overdosed on reading, post your questions here.   It's daunting, but it's do-able.

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

MacKintosh, thanks for the info. Lyme testing is similar to cpn in that low westerm blot tests dont mwan the individual is testing negative for lyme. I have a few questions if you dont mind. Are there any other blood tests I should recieve that will help specify whats really going on? In your eperience does any positivity on IgG, even when low, indicate a chronic infection? Are there any doctors in the NY area that you could reccomend for this? Im familiar with how hard it can be to recieve a doctor willing to treat aggressively with antibiotics. Also, are there any specific symptoms that relate to cpn? Is repeat testing useless/how does one know they are cured of cpn?Now its a matter of deciphering if im experiencing lyme and the co-infections or cpn. Are there any ways you recommend figuring that out?Thanks.

Neg means negative: I tested as 1:64 which was nearly negative but obviously it was not right.  A result of 1:256 or above would be a different matter.  If your worst symptoms are a dry cough and tight chest, why not just wait to see if they clear up, then treat if they don’t? ..............SarahA Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah, thanks for your input. I have several other symptoms that have cleared over the past year and half with lyme & co treatment and several that have not. I have been told by my LLMD that many of my symptoms are lyme related, but that was before cpn was ever part of my equation.Are there any symptoms that are very specific to cpn?About my dry cough and chest tightness, it comes and goes often. This may sound very strange but it is usually accompanied by a feeling of air being stuck within my chest, like the feeling of having to burp. The cough isnt very strong and is similar to a cough I have experienced before after spending a long time in a chlorinated pool...Does this mean that patients that test lower are generally not as sick and have an easier time getting rid of cpn? Would it be possible for my body to still clear my cpn even though only my IgG tested positive (wasnt tested for IgA).Sorry for all the questions, this is a whole new chapter for me. Thanks again.

Ross, Cpn is a bacterial infection.   Due to  genetics and any number of other factors, it will manifest itself differently in different people.  It's implicated in MS, arthritis, rosacea, irritable bowel,  alopecia and  other so-called 'autoimmune' diseases.  In other words,  to answer your question about common symptoms, well... it's hard to declare there are 'common symptoms' specific to cpn.Most of us have experienced bouts of   overwhelming fatigue,  many of us have had neurological issues (like numbness or tingling in various spots on our bodies), some of us have experienced temperature fluctuations.  I think we first banded together here due to  diagnoses of MS or chronic fatigue, for the most part.So,  you can try the 'self-test;, if it will help you make a decision.  Get yourself some N Acetyl Cysteine  (NAC) , take  600-1200mg/day for a few  days and see if you have any reaction.  If you have  a flu-like reaction, you probably have cpn.   If you have no reaction, ratchet up to 2400mg/day, which is our daily dose.  If you still don't have any reaction, it's unlikely you need to pursue this treatment.  (I'm betting you do, but that's based on your description of your symptoms).

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

MaccKintosh, the confusing part would be figuring out to stop treating lyme and start treating cpn, do both at the same time (if thats possible) or to just continue with my lyme treatment.Is it safe to take NAC while on antibiotics? If so, Im going to give it a go and see what happens.Are there any doctors in the NY or nearby areas you could recommend that specialize in cpn and its treatment?One very frustrating symptom I do have is temperature fluctuations. I often have very low temperature but feel like I am going to melt because of how hot I feel.I have seen several MS specialists who all feel that I do not have MS. Actually, the doctor who finally figured out what was going on with me was an MS specialist. She found bands of lyme testing positive on my western blot 2 years ago.Is a dry cough and chest tightness a common symptom? Would it be worth getting a chest x-ray or does that not help at all?Thank you.

A couple of our folks here have learned they are Lyme co-infected. ( I'm sure they'll be along to  chime in soon, but many here only check in once a week, or  even less.)   The rule of thumb has been  that this protocol should cover Lyme, as well.  However, some will say our  dosages aren't high enough to  wipe out the Lyme.   A Lyme-literate doctor  will be able to guide you.Regarding your cough - I am sure my mom has cpn, from all of her symptoms over the years and her reaction to  short courses of antibiotics for various ailments.  She has had that dry cough  as long as I can remember, and I had just  begun to develop it when I started on this protocol.  I don't think I have it all now, and I think it went away pretty early in treatment.    Also, just before starting treatment, I'd developed  a racing heartbeat and what I can only describe as 'forgetting how to breathe'.  I was just not breathing in, then I'd realize I was basically holding my breath, and I  deliberately took in air and let out air.  It was  so  scary. I put a note on the wall, next to my bed, in case I died in my sleep  (with two pertinent phone numbers and  directions on care and feeding of pets).    That breathing thing has been gone for several years now.   It may have happened once a year since I went on  Dr. Wheldon's protocol, maybe less, but obviously it's no longer an issue for me; there are no notes on my  bedroom wall anymore.                      People have had difficulty finding treating doctors in and around NYC.   The Lyme sites do have lists of physicians  posted. You might try hunting there, as a Lyme-literate doctor will  be open to  an antibiotic regimen.   Now, if you travel for business, or have relatives you can visit a couple of times a year, we have  some great doctors in California, Indiana, Florida,  Chicago...      Check your inbox for private messages, as we don't post most of our doctor info on the public boards.    Too many of them have been  brought up on charges by their local boards  for overprescribing antibiotics, so we tend to protect them from scrutiny.Hmm, a chest x-ray.  I don't recall anyone here mentioning they'd had one.     As for taking NAC while on antibiotics,  we ALL DO.   It's part of this protocol.  Cool

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

Hi,I'm new to this site and desperately searching for a doc in south florida. You stated that there are some good docs in Florida in your post. Could you please forward their info to me? It has taken a year to finally get diagnosed properly and finding a doc that is familiar with treating cpn is proving to be just as tough!thanks

As Mac says, try the NAC test and see what happens.  It is quite safe to take with abx: it is part of the regime!  The abx for ridding cpn covers lyme as well: some lyme doctors might think a higher dose is needed, others don’t.  The main thing to get rid of cpn, though, is metronidazole, which might be rather tough but is pulsed for a few days once a month.I can’t think of any symptoms which are specific just to cpnbut if a completely accurate test had been developed one might hope that showing a lower test reading would mean that the infection would be cleared more quickly.  However, my test was low but I had at the time very aggressive secondary progressive MS.  In your case though, it sounds as though you will be able to rid yourself of it with some speed.A good way of not getting a chronic cpn infection in future is to take 1000mg of NAC every few days...............SarahA Journey through Light and Shadow  

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hello Ross!Adding a bit to the good suggestions from Mac and SarahNo need to separate the treatments per se. THe additions for Cpn act against Borrelia as well (I wirte Borrelia as taking Malarone indicates something more in the "Lyme" mix-?). The nitroimidazoles (Flagyl/metronidazole or Fasigyn/tinidazole) have shown strong activity against cystic Borrelia. Especially tinidazole (at least in vitro -- Brorsson, Sapi), so if possible choosing this over Flagyl/metronidazole could be beneficial. As those seem  to be active against both the spirochetes and the cysts, going ahead with more frequent pulsing as reactions allow, is another adjustment within the Cpn CAP that may make sense.It is not likely that you have treated Cpn effectively with the protocol you're on. Not treating Cpn and clearing it from immune cells is making treating Borrelia difficult. Cpn hampers immune cells that are part of the body's defence against Borrelia. If possible, switching from azithromycin to roxithromycin (same antibiotics class) may have added benefit in treating the Borrelia as well as a few possible "co-infections". Regarding the not high enough dosages in the Cpn protocols to treat Borrelia effectively, according to most of the recommendations (ILADS, Burrascano) the very high dosages are generally for monotherapy (one antibiotic at a time). It is likely that the combinations used in the Cpn protocols have synergistic action against Borrelia as well (as they do against Cpn), and the antibiotic effect is then several times the individual dosages would suggest.Borrelia is sensitive to heat, adding sessions in a hot tub, probably has effect, and synergistically with the antibiotics (Reisinger). Good luck

Borrelia/Cpn arthritis: joint, skin, eye, CNS, respiratory, UG involvment; fatigue. Borrelia: Clinical, Elisa&WB IgG, and CPn IgG and IgA pos, HLA-B27 neg. (2010). CAP 5/9/2010 -> 3/2016 2017: some signs and symptoms returning, Borrelia?