Cpnhelp.org

Hello,

I hope I'm posting this in the right place.  I'm new to this site and looking for information, validation and support.  I became very ill in January of 2019 and after many doctor visits (15 different doctor and ER visits) I found an internist/rheumatic doctor that tested me for lyme, mycoplasma pneumonia and Cpn.  I have all three.  On a Facebook lyme website, someone directed me to look up the Wheldon protocol.  This disease/protocol resonated with the symptoms I have experienced and I have been cobbling this protocol together since July of 2019, continuously on antibiotics since that time.  I have only gotten better since then, of course I have felt worse before getting better.  I have been able to pulse the flagyl regularly since January this year plus continuous doxy and AZ plus Alinia for lyme.  In the last few months I have been anticipating the flagyl pulses because I feel so much better when I pulse, it feels like a miracle every time.  A few weeks ago, I had a root canal removed because I could feel infection radiating from that tooth after the flagyl pulses, so far the lymph nodes on that side are smaller and less painful and my eyes feel better. My rheumatologist tests me for Cpn every 3 months or so, last month my IgG was 1:128 - above high normal and IgM was normal, the previous test 4 months ago showed IgG the normal range. Is it common for IgG to come and go throughout treatment?  My doc is a bit mistified and can't explain it.  Does anyone else get tested for Cpn during treatment?  My liver enzymes have been a bit elevated and I am assuming that is caused from die off and possibly antibiotics?  I'm taking NAC, Tudca, Rhodiola to help with elevated ALT.  My doc sent me for an abdominal ultrasound which came back normal.  I'm getting better but I am not yet cured.  From what I gather, from this site, it might take 3-5 years to eradicate this pathogen?  I've been feeling sad because this isn't resolving as fast as I would like it to, but it looks like I just need to be patient and know that it will take time maybe a couple more years?  Last year, I had a brain MRI which showed no lesions in my brain but I had balance issues, extreme pain, cognitive issues, slurred speech, feeling like I'm on a boat, which seems indicative of MS, but I don't think I had been sick long enough (6 months or so) to have visible damage to my nervous system.  One thing that I vary in the protocol is that I do 200mg doxy 2x per day otherwise I feel extreme pressure, pain, burning in my head, scalp and eyes. I'm wondering if this might be from the lyme or is it Cpn?  From what I've read the MIC for neuro-lyme is 200mg 2X per day so 200 a day doesn't cut it.  I've tried to dial it back to 200mg per day as specified by the Wheldon protocol but it's too painful.  Thank you for accepting me on this site,I am grateful for anyone willing to read this and possibly give any insight.  

One last question.  Will the protocol work without the Rifabutin.  I've only been doing Doxy AZ Flagyl and NAC.  I haven't done the NAC as religiously as I should have.  I didn't realize it's importance until recently.

Thanks

Welcome to the site. 

"last month my IgG was 1:128 - above high normal and IgM was normal, the previous test 4 months ago showed IgG the normal range. Is it common for IgG to come and go throughout treatment?"

I remember reading that IgG might rise after the usage of antibiotics, cpn is intracellular and not much is exposed to the immune system until you kill them somehow(antibiotics) 

"Does anyone else get tested for Cpn during treatment?"

 

I don't believe many do, this test might not be that useful, a low result might be so because of the intracellular nature of cpn, but on the other hand my IgG were 512 when I started the protocol, I had a nasty cough for more than 10 years before I started the protocol.   

"My liver enzymes have been a bit elevated and I am assuming that is caused from die off and possibly antibiotics?"

That is one explanation that might be correct but keep an eye on them just in case, for the record mine were near the upper limit sometimes too 39/40  41/40

 

"From what I gather, from this site, it might take 3-5 years to eradicate this pathogen?"

I stopped at 3+1 years and I hope I didn't make a mistake, some people might need less some might need more. One year is the bare minimum I believe.

please keep in mind that I'm not a doctor or anything like that.