Cpnhelp.org

300mg Doxy a day ?? - Did you mean 300mg ? was it a typo ?  Unless your doc is an abx specialist then the max dose is 200mg per day. DW recommends building up to 200mg a day.  I cannot see any literature which suggest 300mg a day.............Mark

Mark Walker - Oxford, England.
RRMS since 91, Dx 97. CFS from Jan03.  Patient of David Wheldon Feb06, started CAP Mar06, with Copaxone. Pharma Consultant (worked until Jan 03).

Ditto to Mark's comment. This is a much higher dose than called for on any protocol I know, and all at once! My start-up was unfortunately similar as my original doc started me on a full dose of tetracycline, which turns out to be a stronger antichlamydial than doxy, even though it doesn't cross the BB barrier. I was virtually bed-ridden for two weeks. It's too fast a start and too high a dose.

The ears- every time I've added a new abx I get ear pressure and liquid for a couple weeks. This seems to be a common reservoir of Cpn.

Sorry, don't know about Actos. 

Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndrome & Fibromyalgia- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA

manycatz,  I also did a double-take on your doxy dosage. and what are actos?

Joyce~caregiver and advocate in Dallas for SteveJ (SPMS):  started CAP 8/21/06

 300 mg a day is right. I do 100 mg morning 200 mg night. My doc is one of the specialists in this and hes very good. I sought him out for this. Best dang doc I ever had. He already helped me fix some things other docs just ignored. And he usually understands things other regular docs didnt so, so far Ive had great results with him. Plus hes so kind and genuine. Ive worked in the medical field for around 15 years (besides being a patient) and no worries this doctor is one of the best I could have managed to find.  Hes the one who did the testing and everything. Too bad it took me so many years when hes so nearby me, goes to show you have to keep looking, keep going even when you feel like giving up trying to find a decent doctor. Thanks for your concern but dont worry about me that way, Im one of the lucky ones set doctor wise. :) YAY!

 Ok heres the thing, he highly suspects lyme (on top of my positive CPN test) but my lyme test bands came back sketchy, so part of this was also a lyme challenge for 5 weeks. Lyme antibiotic challenge is where they give you antibiotics for 3-5 weeks and retest to look at the bands again to see if youre reaction changes. Normally you would just be pronounced negative by normal labs but he gets the band results himself, and if there are certain bands which are undetermined he does the antibiotic challenge. Hoping to kill off some hiders and bring them out into the open. Im pretty sure Ive seen 400mg a day around, but ill look into that a bit. But I may have been hit a little harder because of the lyme suspicions. As my doctor admits, we dont really know the exact best ways to get rid of all this stuff yet. And he gave me the ability to cut my dose if needed. Perhaps also because for two years I had been on and off doxy a lot.

 I started at 400 mg but couldnt handle that so quickly backed down to 300 a day. Im tolerating that better but holy when the weakness/shaking hit I was a bit afraid. I didnt take any antibiotic last sunday and by monday when I went to see the doctor I already felt a bit better/stronger. We didnt consider cutting the dose, just talked about cytokine anti inflammatories. Actos (rx med) as well as another natural med ( I didnt get the name of) are used for this cytokine release which is part of what the body is doing in reaction to the die off that causes the symptoms. From what I could find and Im sure is common belief, using the anti inflammatory doesnt stop the antibiotics or body from doing its job to clear the CPN. It just stops the cytokines from hammering your body. I found a bunch of info on net about using actos with antibiotic therapy.

 Actos is very expensive brand med, so the alternative which is cheaper is the natural med. I went for actos because as of this month I actually got on a prescription medicine plan. The pharmacy cost for 30 actos is $153 which means youd get charged around $200 $250 or something. Perhaps thats why its not super common. I will find out the natual med name it was about $60 per month.

 I was just wondering if anyone here had some experience taking it. It is normally used as a diabetic medicine, but again also dampens cytokines from being so destructive symptom wise. Therefore allowing us to take the antibiotics and not suffer so much.

 Today is thursday and I still feel ok, I havent gotten the actos yet (waiting for it to be sent). Not sure if not taking doxy on sunday lasted this long, or if maybe this weakness/shaking was one of my cycles of this just worsened by the antibiotics. I was having some weakness shaking problems on and off before but not to the extent of last week. Mostly Im doing ok on the 300mg with good pain management and lack of anything I have to do.

 Ill give the actos a try and be sure to let you all know.

 If the actos doesnt work and I cant manage I will surely go down to 200mg a day. my doc wont have a problem with that as he was prepared for that as well in the first place. he just told me to call him if I had to go under 300 mg, which is why Im thinking this dose may have been originally intended for the lyme challenge. But if I can handle it we will keep going with it sort of thing.

Actos, if you want to know more about it you can search for "antibiotics actos" or anything else you can think of related to cpn die off with actos in there. I found some very interesting information on antibiotic treatment in general from searching the net for this.

 FYI

 I asked my doctor "so this inflammatory reaction isnt something ibuprofen can help?"

 He said "Ibuprofen controls prostaglandins, actos is for cytokines"

 So basically they are two different types of inflammatory armies that have to be fought with different meds. The antibiotics cause die off- cause cytokines -cause symptoms.

Control the cytokines, controls the symptoms of die off.

  However, I believe starting lower and working up is appropriate. We probably dont know if starting higher and using something like actos is better long term or not, but seems to me conservative approach low dose and work up is better to start with. And of course all the doctors do that including mine. Either way things are available to help us from getting so sick. Id imagine some people still do get too sick on low doses and maybe it can be helpful to some who have such a hard time on metronidazole.

I think the usual dose depends on what size you are, the bacteriostatic dose for doxycycline is 4mg/kg body weight so for me at a weight of 50kg the dose of 200mg a day is exactly right, a bigger dose would be bacteriocidal.

Are you only taking doxy? I'm not sure whether this rule applies when taken with other antibiotics but if you are taking roxithromycin or zith as well then they act together and the combined effect is greater so you might just be killing off too much at once.

Ah good point, im about 135 lbs. But doxy is used orally at a pretty standard dose for most infections unless perhaps you are very heavy? Either way I was started on 200mgs twice a day. Which I didnt think was out of hand and Ive been educating myself about this for 6 years now. I was willing to see if I could tolerate it.

 The reality is theres different wheels on this spoke all doing similar things, learning from each other as well as their patients. I just came in from a different direction then Wheldons protocols. I know more about my doctors protocols then I do about Wheldons ways, but I know DW participates here and I have read around cpnhelp a lot. There is some differences in how different doctor groups go about this but for the most part they are the same. Maybe my doctors start at higher doses then use something like actos to control the symptoms, or start at a higher dose to see if its tolerable to the individual. Thats possible.  Or maybe like I thoought initially it was for the antibiotic challenge. It was very clear from the start that I was welcome to decrease the dose if I needed to then we would go from there. I was more then prepared in what I was doing and what could be ahead, so I wasnt lost in any way.

  I started abx 5 weeks ago so yes Im only on doxy right now, will be adding others as usual down the road. I will follow the same protocol you all are on. doxy, add zith, add metro. but that might change if I come up as lyme on top of the CPN.

Elinor is wrong about this.  Doxycycline for children is worked out by weight, but the correct dose for adults, with fully functioning adult organs, which everyone has by puberty, is 200mg per day.......Sarah

http://www.rxlist.com/cgi/generic/doxycyc_ids.htm

An Itinerary in Light and ShadowStarted the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2.

200 mg is a common and standard dose orally for most infectionsi. Perhaps she is thinking iv or im dose. Thats where mg per kg normally comes into play.

 As we know common courses dont tend to work for CPN and the like, therefore perhaps some revert to mg per kg for oral doses to be sure there is a thorough job done.

 I will ask him why he started at 400mgs.

Heres Institute of Molecular Medicines recommendations for antibiotic treatment, if you scroll down youll see the doxy dose 200-300mg per day. These guys know what they are doing and they were at the forefront of the push for anti treatment. Check out their site lots of good info.

http://www.immed.org/publications/treatment_considerations/Treat.consider.02.12.3RTF.htm

Of course, Elinor might be thinking about IV stuff because she does after all have a diagnosis of lyme disease, but I think the dose there is between 100 and 150mg.  Both David and Stratton both recommend 200mg as an oral dose, plus a macrolide in synergy.  Garth Nicolson recommends between 200 and 300mg, either alone or in combination.  If you can tolerate it, there probably isn't that much difference, but his regime isn't for as long and is aimed more at mycoplasma infections.  For multiple sclerosis this is too much.  Also he doesn't even touch upon metronidazole in the context used here.......Sarah

An Itinerary in Light and ShadowStarted the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2.

manycatz,  I read your above link and wish I had  access to it at it's publication[1998, 2002], but better late than never.  I will be interested to get the perspective of our  'experts' here.  DW..et al...? 

The part about antidepressants affecting abx absorption is a bit worrisome, as I have been on a Zoloft/Wellbutrin/Trazodone 'cocktail' for quite some time, including over the past year while taking  the CAP.  I began Trazodone 9 yrs ago to treat my sudden, intractable insomnia.  The Zoloft was added one yr  later to improve mood/energy.  Finally Wellbutrin[max dose of 450 extended release]  was added to counteract my extreme daytime sleepiness. 

I have been so busy making sure I space vit's and mins 2 hrs apart from the abx, that I never considered the possibility that taking my Wellbutrin with Azith. in the a.m. might be a problem.  Or that my taking Zoloft with Doxy. in the evenings  might render it useless.

Either I've wasted a yr's time with little to no benefit, or there just aren't enough hours in the day.  btw, I would LOVE to taper these meds down to nil, but am uncertain about how I might fare such a change.  I have been telling my psy. md for 2 yrs that the Wellbutrin makes me very spastic, but she just shrugs and blames it on the ms. 

-KK2

On Doxy, Azith, and Flagyl for rrms since October '05

 Sarah,

 Indeed Garth does speak about metronidazole on that same page. For doxy, he suggests 6 months constant then 6 week intervals for at least a year. As well as addition of other antibiotics.   Theres tons and tons of information on their site about everything under the sun, I was just reading a very detailed thing about cytokines and interferons. http://www.immed.org 

 Kitkat,

 First of all if you think a med is doing something you need to take your own counsel on it if a doctor is ignoring you. If a doctor ignores you it makes it nearly impossible for them to help you. Those sorts of doctors never actually helped me get well, they just hardly kept me going, I was b12 deficient for 10 years thanks to them shrugging me off.  I see now how dangerous it was that I accepted what they had to say and tried to carry on. So for goodness sakes dont ignore yourself about things, it becomes what we do when doctors ignore us.

 Wellbutrin also has a withdrawal syndrome some people experience that you should be aware of. You can search the net for "wellbutrin withdrawal". You can also search "wellbutrin spastic" and see what comes up. The only one of those meds I would even consider taking is trazadone. But you have to decide for yourself what you need, just make sure you know what helps you and what doesnt. Im pretty anti depressant paranoid after paxil nearly killed me and I lost everything I owned from it. But as I see since the black box warnings doctors tend to avoid paxil and zoloft has come much more into use.

Garth Nicolsen is a researcher. There is some very interesting info there. So if you wander around their site youll see they are very detail oriented.  He isnt saying come off meds that are absolutely needed, hes saying taper them if possible. One of my meds is in that mix too, vicodin, which theres no way I can come off of. Im sure my doctor (and others) know this but know he wouldnt be giving me the med if I didnt need it. Perhaps that can even be the point of giving a higher dose to make sure enough gets into the system.

 There is some other options for sleep and energy besides anti depressants, if that is your main reason for them. I find great success with the options given me through endfatigue.com. They use the vitamin mix and b complex for energy, which really works well. And its so easy because its a ton of vitamins in one drink. Their b complex is pretty strong some people find they can only tolerate taking half capsule or else they are too energized. And then they have sleep formulas which I havent tried.  The doc doesnt take profit so its not a profit site, as well Doc T who runs that site has Chronic fatigue.

 I sleep well since ive gotten proper b12 treatment and pain mangement with vicodin/fentanyl. I really had a hell of a time sleeping when I was low b12, it was amazing how much better I slept after I had b12 treatment- which also turned into waking up feeling AWAKE for the first time I can remember. The doctors on his list treat sleep, hormones, infections, and pain are their main priorities at first to get someone comfortable and functional. I found this approach worked well for me. They do pain/sleep first because nothing else can be right if our body is racked with pain and/or cant sleep properly.

 Have you had b12 or some of the other tests? Doc Teitelbaum and others treat if your b12 is below 540, lab low is below 200. Most doctors wont bother to call it abrnomal if its not below 200 and will tell you youre fine. I wish some doctors had treated me before I hit below 200 because I know now it would have helped me a lot with sleep/energy among other muscle problems. Iwent up and down over 10 years in 1995 I was 149, then in 2000 I was 227, 2 years ago I was 160. So if youre below 540 you might find b12 treatment helps you a lot with sleep/energy. It was like a magic bullet for me and they say theres no such thing :P.

Sorry to have confused you all.......manycatz as you said your doctor was treating you for lyme I thought he might have based your dose of doxy on what is often recommended when its used as a bacteriostatic agent in treating lyme,  that is oral doxy at 4mg/kg body weight. When used as a bacteriocidal it is used at much higher doses, Dr Burrascano recommends 300-600 per day.

 http://tinyurl.com/yahvd8

Sarah is right about the 200mg dose probably being enough when used with the macrolide, that's what I meant when I said they work together so maybe you'll find that you don't need as much as 300 once you start the second abx. And yes, yes, yes, to taking your own counsel, we all need a bit of that!

Dr Garth Nicolsons research has been  helpful to me too, he used to post on a yahoo board I belonged to and his advice to CFS patients was extremely useful,  sadly that board closed down and much very valuable information was lost. I'm glad his own site is still available.

Elinor, I think we all confuse each other sometimes.  I am a past master at it!

KK2, David thinks very highly of Garth Nicolson and his work, although it is more mycoplasma oriented than CPn.  The only things I have taken care to space two hours apart though, are doxy and cal/mag, acidophilus and any abx and likewise charcoal when I tried it.  Otherwise I haven't bothered and David says you don't need to.  You can't say that this approach hasn't worked for me.  I don't know about anti-depressants: I've never taken any........Sarah

An Itinerary in Light and ShadowStarted the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2.

Caution for MSers - I am concerned that people with MS (especially RRMS) could increase their abx doses after reading this forum.  I understand 200mg a day to be the best dose of Doxycycline for people with MS (especially RRMS) on an abx protocol.  People with MS have CPN in their central nervous tissue, if CPN is a factor of the MS. This means that the toxins released when CPN is killed are present in very sensitive tissue and there is a real risk of damage to the nervous tissue if a very agressive (high dose) regime is used. Put simply the medicine could do more damage than the disease.  If you do not have MS and an abx specialist doctor is prescribing your abxs, this is another protocol and not empirical CAP for MS.  Please share your diagnosis on posts otherwise people who are self treating for MS could get the wrong message for our disease.........Mark

Mark Walker - Oxford, England.
RRMS since 91, Dx 97. CFS from Jan03.  Patient of David Wheldon Feb06, started eCAP(DW) Mar06, with Copaxone. Pharma Consultant (worked until Jan 03).

I agree 100% with Mark about this.  People are being treated for so many different diagnoses on this site, it gets awfully confusing unless you include this in you signature.  Even "Being treated for CPn" isn't enough.  It takes very little effort to do this, because once made the signature comes up automatically in the posting box: you just type above it, so please do this.  I have altered one of my postings above, because I knew I was talking to someone who did not have MS, someone else might not......Sarah

An Itinerary in Light and ShadowStarted the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2.

I just noticed that in my blog, my full signature didn't come up. It does when I reply in the forum.

Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgia, interstitial cystitis, sinus: minocycline, Zithromycin, Tinidazole or Flagyl

I've just checked mine and in the last ones, since I started using a signature they are all there, but maybe I made a point of doing it manually.  I blog so rarely I can't remember.  I think I maybe cut and pasted from an existing comment, so I suppose that is an option, but there are so many members now that you really need to know the person's diagnosis as much as what they are taking.  I hope your shingles are getting better!......Sarah

An Itinerary in Light and ShadowStarted the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2.

 Well. I didnt even know the dose was for lyme until now. And I didnt know there was an exact different protocol for ms, so sorry to have confused anyone. In my defense, I never said I had ms lol. All I knew is I was getting treated for cpn at the same time as doing the lyme antibiotic challenge.  I wouldnt have put lyme into a sig for me because I havent considered myself lyme and I thought my dose was based  on the CPN not the suspicion of Lyme. Thank you Elinor for the info. Sara can you help me figure out how to make a sig now that ive made an account pls ty?

 Ohhh because I said weakness you thought ms, that explains a lot :). I can find more info about MS on this site then I can for fibromyalgia, Wheldon must specialize in MS. I havent spent as much time reading into that though so forgive me if I am not familiar with that dosing regimen. Is there many folks treating themselves?! Yikes, I was too afraid to even try it without a knowledgeable doctor. But I suppose if I had a bad case of MS I would have been in more of a hurry. Are we helping these people find proper doctors? I mean if no one has a problem with it there is a national list for the USA which also includes some other countries of doctors who use antibiotics. Shouldnt we be helping these people find doctors?

 well thats just fine and dandy.... so if I have lyme ill have to go through a harder cpn die off! Is that what Im being told here without being told?

 *CRIES* Ill find out on the 27th the lyme results.

 The actos hasnt arrived yet. I have been feeling better, I think maybe this downwards bout had to do with the beforehand of my monthly ordeal on top of the antibiotics lol. (polite way to say it)

Emily

Fibromyalgia,b12 deficiency, endometriosis, unexplained neuro issues, positive CPN by blood pcr, suspect lyme disease, started abx September 06.

Emily, you mightn't have a harder time if you have lyme as well as Cpn, it often depends on how ill you are to start with and that means your total bacteria load as well as your own particular response to that load.

Lots on here are treating Cpn in MS but there are others with different diagnoses which are after all only labels which give a guide to what is wrong. My own diagnosis is ME/Lyme Borreliosis  but I have so many MS symptoms that two neurologists and two other doctors have considered diagnosing that condition.

 The lesions that lyme/borrelia causes in the brain are very hard to distinguish from the lesions found in MS and people who have lyme are sometimes diagnosed with MS. Borrelia is a spirochetal infection, caught from insect bites, which is now being called 'The New Great Imitator' the 'old' Great Imitator was syphilis which is also caused by a spirochete and causes many of the same symptoms.

 In the end your reaction to the CAP is your best guide so listen to your body, you started this thread by saying the treatment made you very ill, listen to Paul Simon  and make this your theme song..............

'Slow down, you movin' too fast, You gotta make the moment last, Just kickin' down the cobblestones, Lookin' for fun and feelin' groovy..........

I had to learn that the hard way but  hoping to feel groovy very soon! 

Elinor from England, UK..... on Wheldon protocol for ME/lyme borreliosis , positive for borrelia and Cpn.  Started  Aug 05, stopped Jan06, started again Oct 06.

Oh, no Emily, I never thought you had MS because nobody with MS should take 300mg a day of doxycycline.  Other people with MS and new to the board might not know that, though.........Sarah

An Itinerary in Light and ShadowStarted the Wheldon regime in August 2003, for very aggressive SPMS.  Moved to intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2.