posted
Keebler, I caught the first post on cpn, but by the time I responded, you figured out what you were doing and it disappeared. ;-)
I'm thinking, take the script for doxy or whatever the dr gives you and stash the pills. Start with NAC and see if it has a reaction. You can start with minimum NAC and do it every other day or every third day... whatever you can tolerate. Then work your way up in dosages.
NAC bursts the elementary body form of cpn and you will get some die-off, which will help prep you for when you do antibiotics. We all know we're going to get 'sicker' from doing the treatment, as the dead cpn is toxic waste, but I'd be asking your dr for meds to counter the skin rash when he/she dispenses the doxy script. (Lots of people on cpnhelp have had skin rash early in treatment. As you know, skin is your largest organ, so it makes sense that it harbors lots of cpn infection.)
You might want to write a PM to Michele at cpnhelp (that's one L, not two). She's had alopecia and this treatment resulted in lots of skin outbreaks, including bumps, real bumps. She might be able to advise you how to proceed.
Also, I saw an allergist before starting and he suggested I take benadryl after taking azith, to minimize skin rash, etc. He knew I wasn't allergic, but said skin rash was possible and benadryl would help. Lately, a lot of people on cpnhelp.org are taking benadryl with the protocol, just to reduce inflammation from die-off.
-------------------- 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 Posts: 19 | From Chicago area | Registered: May 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
deleting post
[ 11. May 2008, 10:06 PM: Message edited by: timaca ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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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 Posts: 19 | From Chicago area | Registered: May 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Mackintosh~
Thanks for the info. I deleted the post so as not to confuse others.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
MacKintosh - please check your PM.
I am having trouble posted at cpnhelp.org - seems I tried to clean up format so many times on a post I've been flagged as a spammer.
I have that post and it has some key information in it about a comment regarding tryptophan. As many posters there deal with secondary porphryia, the articles I had cautioned about that as it can cause damage.
for others here interested, I started by searching PubMed with the two key terms: tryptophan, porphyria.
For those at this site: The reason this is important is that when the liver is stressed, even if genetic porphryria is not a factor, secondary porphryia can be...so lyme / CFS / Cpn patients sometimes do well to keep excess porphyrins low. In excess, damage can occur. Also, genetic porphyrias often go undiagnosed until a acute attack. A very complex topic but that's for another day.
MacKintosh - I will send you the post I had intended, and if you feel it is important please post it.
Also, there is no way to contact the administrator - that I see - to clear up my being blocked. I'll just wait. I need to stay off computer for while anyway and get some stuff done.
Thanks.
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
MacKintosh-thanks for posting this thread. I got The Potbelly Syndrome book and started reading it yesterday. The book lists several different website for cpn treatment protocols. One of the sites (Wheldon) states 200 mgs. doxy once daily and roxiromycin twice daily. I think I read in your thread 200 mg. doxy and azith Mon. Wed. Fri.
Are there different protocols? The author of the book started out with clarithromycin (biaxin).
Have the protocols been updated? I haven't finished the book. It's going to take me awhile to understand a lot of it but any help would be greatly appreciated. Thanks for all of your great info!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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posted
Sunnymalibu - In the U.S., we use 200mg doxy daily, 250mg azithromycin every mon, wed and fri, and then, one week out of every month, we add in five days straight of metronidazole (flagyl) at 1500mg per day.
Dr. Wheldon's a Brit, and the meds and the dosages are slightly different there. I think flagyl is a 400mg pill, so he recommends 1200mg of flagyl or tinidazole each day for five days.
One of the meds isn't approved in the U.S. My feeble brain (today was my first day back to work after vacation) says its roxythromycin. Some people resort to the internet to get around U.S. restrictions. If I got that one wrong, I'll come back and correct it. ;-)
There's a new, very experimental, version of the protocol, but it's been prescribed for very specific needs at this point and is causing a stir on our board. We stress that newbies should not try it when first starting out.
Actually, the author of Potbelly posts a little bit on our site and if you come by there and post a topic with his name in it, he'll likely see it and would be able to answer you directly. Your version of Potbelly is probably very recent, as he edited some of the cpn resources in after I bought my version. It will be a lot easier for those who get later versions to find the websites and research materials we earlier pioneers had to scrounge up for ourselves. THAT is a very good thing.
-------------------- 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 Posts: 19 | From Chicago area | Registered: May 2008
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Mac, I believe you are correct about the roxy.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
I'm just bumping this to see if anyone who needs to ask questions wants to post (or send a pm, which is fine by me). I'm only checking in here once a week now.
I see a few have made it over to cpnhelp, which is enriching the site with a lot of Lyme insights, so this is a win-win. Several people over there are co-infected with Lyme.
Thanks, everyone, for being so nice to an 'off boarder' who none of you knew a month ago! ;-)
-------------------- 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 Posts: 19 | From Chicago area | Registered: May 2008
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Thanks to you!! I was checking out the cpn board again last night. Good info on there!
Posts: 1366 | From Southeast | Registered: Sep 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
MacKintosh~
Thanks for your continued kindness towards us here at Lymenet. You are a gem.
I do my best to remind people here that you really should get tested for Cpn and various viruses in addition to lyme to really know what you are infected with before beginning treatment. The symptoms are the same, for all that I mentioned...thus labs can help sort out what the root of the problem is.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Timaca, I agree on testing. I think, with Mayo Clinic now having good results with cpn testing (they may be using the Vanderbilt guidelines), we should see better testing for cpn spreading throughout the country. Since they're the 'gold standard' for treatment, hopefully their testing method/success will spread and we can count on better and more consistent results in the near future.
As for me, I'm going to have an entire battery of tests soon, just to have a clear picture to go forward with. I'll be weaning myself from antibiotics at my three year mark in October, unless one of the tests indicates I still need to be medicating. Cross your fingers!
-------------------- 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 Posts: 19 | From Chicago area | Registered: May 2008
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How do you feel now compared to when you started??? Do you feel like you are in remission?
I may need to get tested for this also!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I don't know how to respond to 'remission', so I have to call it 'recovery'. When I'm done killing the cause of what the doctor called MS, I'm cured. Cause (cpn) killed = disease (MS) cured.
Mind you, this is no instant cure. I figure, at nearly 33 months of treatment, I still have at least six months of full-time treatment to go, then I taper off into next year, until I'm off antibiotics entirely. (My doctor and I agree that I'll switch out one antibiotic in a couple of months just to make sure I've hit the cpn with everything possible.)
To be subjective, I'd say I'm 98% there. No exhaustion, no left side weakness, no foot drag, no falls, no weird temperature fluctuations, no skewed sleep patterns and I sleep through most nights, no sudden 'dry mouth' or trouble swallowing, almost no facial flushing after exertion, ability to withstand heat and humidity, no muscle spasms, no lung congestion, only one 'cold' in three years, recovered decision-making ability, recovered short-term memory, recovering the ability to quickly access my vocabulary (not being able to tap my extensive vocabulary was super-frustrating). The 'foot buzz' is infrequent now, so I suppose it's diminishing over time.
I'm still hoping to recover the depth perception deficit that was caused by my optic neuritis bout in 2005, as well as the full feeling in one semi-numb toe. Still feels like a rubberband is wrapped around that toe. All good, as far as I'm concerned.
-------------------- 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 Posts: 19 | From Chicago area | Registered: May 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
makintosh probably doesn't come here that much but if anyone knows how to reach them i am wondeing how they handled candida being on abx so long
i'm also wondering where makintosh did full battery of testing
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
lpkayak~ You will have a better time finding Makintosh on the Cpn website: www.cpnhelp.org
Best, Timaca ps...with regard to testing...I've had lots of testing done. Cpn can be tested at most any lab. I've had testing done for it at Focus Diagnostics lab and LabCorp.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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