posted
Hi feelfit, I believe karenl is doing/did that protocol. Hopefully she'll be around soon to help you out :-).
Also, using the supplement NAC is a way to tell you if CPN is a possible problem.
Posts: 269 | From VA | Registered: Jun 2005
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
I did Zith (later changed to Biaxin) + flgayl (now on tinnidazole) as a Lyme combo and then a couple of months later, to my surprise, my CPN was almost gone! Now, I just have what I've always had- asthma- but no more CPN. I got curious and poked around on the web to find out more about CPN Tx and, well, there it was- I happen to be on it by accident via Lyme Tx.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've been dx with Cpn. My numbers were off the chart for chronic, persistent. I could not tolerate the treatment, though.
In addition to IgG and IgM, there is another Ig_, too. My guess is that, like lyme, there is no one easy answer and we just don't know everything yet.
I've not seen, nor can connect with CPN.org -
I'm wondering if you meant the site below? Did you post this question over here? ------------
[ 06-23-2010, 12:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I also tested positive for CPN. Have been on similar protocols for Lyme and Co's but not the specific combo recommended on cpnhelp.org.
I've only done about 3mo total on Tindamax because of my severe neuropathy problems. Never tried Flagyl. Have been on plaquenil throughout treatment.
Was lucky to find a pulmonologist in my area to treat my mom with the CPN protocol. She has MS but tested neg(repeatedly) for Lyme. The doctor had her on Zith and Doxy for several months. She felt better on this protocol and did not have any herxes.
The cpn site recommends that you also take Rifampin and pulse flagyl. My mom has not been put on these meds yet. She needs to make a f/u soon so thank you for reminding me with your post feelfit!
Feelfit, if you're not getting better with your current treatment it would be worth while to try the cpn protocol. Good luck and keep us posted with how you do!
Posts: 5237 | From here | Registered: Nov 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
thank you for all of your responses. My doctor and I are looking at the cpnhelp.org combos and will decide a course of action
Keebs, sorry, i did mean cpnhelp.org.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Feelfit,
if you need me just pm. Yes I have the same results as you and people on cpnhelp.org say this is positive. Your doctor will tell you that you are totally healthy - as my doctor told me. But it is said that after three weeks your body is not able to make IGM - as complicated as lyme.
The NAC test is very good, just try it with your friends.
I watch the page since some time and these people are getting better, so you should give it a try. I try to combime it with my other protocols and hope it helps. Always the question do you have red or brown dots - my opinion is they are from cpn.
The doxy or mino with azithro should also be good for lyme as well. Karen
Posts: 1834 | From US | Registered: Oct 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
What is the NAC test?
Posts: 2541 | From Northeast | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
ThanksKaren...to answer your Q yes, i have the brown dots on my legs and arms and some red dots on my chest.....what do they signify?
Laura j the NAC test is N-acetyl cystine...i think the spelling is off...but it is a supplement NAC (for short) can be ordered on vitacost or iherb.
Supposedly with CPN when you take NAC it sometimes gives flu-like symptoms.
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
AGAIN, I've got the same number Feelfit. Strange, huh?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
oh gosh, we were separated at birth Seek..too funny...or not! So we know that our immune system is not working...and we have probable CPN, Babesia WA-1 and what else????? uncle markie?
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'll add EBV too to the list since my EA Ab are very high.
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Feelfit,
I think brown dots on your legs and arms and some red dots on your chest..... signify you are positive for cpn and many others with the dots should take the NAC test to figure it out.The NAC test is not a scientific test but when you get flu like symptoms you probably should look into a blood test.
Cpn is very often with lyme just not recognized. With 256 you should feel a bit sick and then the EBV... When you are treated you will get more dots in the beginning.
Posts: 1834 | From US | Registered: Oct 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
yeah Karen, but what are the dots from? What do they mean? That cpnhelp.org site is monsterous!! It is going to take me forever to make my way around there.
As an aside. My IgG subclasses 1 and 3 were low too...thanks to ChuckG and the link that he provided, I see that 1 and 3 are related to respritory infections...makes sense as CPN def. affects the respritory system....hummmm.
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
/\
Posts: 3975 | From usa | Registered: Aug 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
yes it is overwhelming for everybody. Pm if you need help. My IgG 3 is low ...infection... Cpn people report about the dots and I get them in loads when I take meds against cpn, probably die-off.I think broken blood vessels. Cpn is a blood vessel disease. Will be at a vein specialist today. Do you have viruses like EBV?
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