27 Apr 2018
Author
Pink
Title

doc stopping my abx in 6 weeks, what to do

Body

Hi Guys,To refresh the story, what happened is my regular doc would not prescribe me the protocol, and told me to go to this other doctor who might prescribe the abx (which she was very against).  Doc #2 agreed to put me on a "trial" of abx.  Although it was clear he had little experience or comfort level with it in general.  It's all very confusing because he seemed to be a Lyme expert, said he had patients on abx for a year who had "done well" and then went on to his natural protocol for maintenance etc.  Yet he knew nothing about EBV, and had no interest in Cpn, etc.  Anyway, I guess his

Comments

 Pink, for me it was more than 8 months before I began to see improvement.  It may have been there but I was so foggy I couldn't see it.   Even now, after almost 28 months, I still react to the flagyl, though it seems to be much reduced on day 3 and more on days 4 and 5.  It appears from reading your post that you are trying to push yourself into going to see Dr. Powell.   We are so much on our own here   The biggest assets I have now are patience, the ability to plan, and lots of understanding that what I do plan will be harder than I thought. 

I, too, would be sputtering with indignation and upset (understatement) if I were told (threatened) with cutting me off after I had put in 4 1/2 months of what you have.   You, in the end, have to do this.  We will try to help you however we can.   

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 35 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Pink, it really sounds to me as though this is a case for Mike Powell.  I have a friend in Ontario and  her experience of the Canadian healthcare system is not the best........Sarah 

An Itinerary in Light and Shadow.Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2006 still take this, now two weeks every three months.  EDSS was about 7, now 2. United Kingdom.

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.

Pink I don't know how things work in Canada, or whether your prescirbing doctor is open minded enought to talk to Dr Powell himself, but that could be the reassurance that he needs.   If flying to see Dr Powell is something that is going to make your ill, it might be an alternative.

Rica is right about the length of treatment.   It was four months before I started noticing my hair growing and my skin is going through a major erruption now 8 months into the treatment, although I have never suffered from spots and boils before.   You don't say which Abx you react to, is it just the flagyl? or are the others making you 'worse' too.   If you are having reactions then I would carry on one way or another.

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Hi Guys, thanks for the messages,

Michele - I've never even gotten to Flagyl yet!  It has taken me this long (4 months +) to work up to the fully Doxy dose (I tolerated Zithro better it seems for whatever reason).  For some reason, Doxy gave me the most troubles in terms of my rosacea and thermoreg issues. Funny, because it is the major abx used to treat rosacea!  Which tells me that since I am not seeing the anti-inflammatory effects the abx are supposed to garner for rosacea sufferers, then I must really have a high bacterial load and seeing alot of die-off.....

I should have said really it is my fatigue and being hot (heat intolerance) that is about 15% worse (hard to get worse, believe me at some point it becomes irrelevant when you are sooooo bad!).  My sweating, night sweats and rosacea are about 50% worse though, which is quite a battle. 

I'm not sure my doc would even listen to me about contacting Dr. Powell, although it would be ideal.  It would be very hard for me to convince him of anything I think, given his personality, and my own obvious lack of experience, other than anecdotal, with this subject.  It's also complicated becuase I need to him to back me with the insurance stuff too, so I don't want to push too hard, and make him mad......Sigh.............

Pink

FM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....

 

PinkFM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.37 yrs old, sick since age 26 and still trying to find a way back to health..... 

Pink,you poor suffering gal. Isn't it a shame that the borders of our countries impose such horrid restrictions on us? The ideal case for you would be to be treated by a doctor who is familiar with the CAP and all the attendant reactions.

I guess if I was in your situation, I might drive the distance to see the doctor of my choice if I had the time to do it. Then there would be no air travel involved or you could take a train. Or you could move to Calif and get in on the universal health care that Govenor Arnie is proposing even for illegal immigrants!!! There's a solution for you!

Hopefully this will all work out for you!

Raven

CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS. Now treating for EVB and atypical mycobacteria. 

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

 Pink, it is so hard and I really am sorry.  I have been down this very long road and I keep repeating how worthwhile, though a nightmare at times, it has been for me.  But I also keep repeating that the alternative (is there one?) is worse.   The hot and cold, whichever is the poison of the day, is a subject I blogged about.  Mine was primarily trying fruitlessly to get warm, but I also melted from the inside out in summer.  All gone now, though summer days here can be the proverbial 90/90, but fortunately are seldom quite that bad..

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 35 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Pink- I don't know what to say other than stay with it. You'll find someone eventually. If you stay with the NAC you may help minimize losing ground while off abx. Is it any easier for you to get to Tennessee? If so, contact Dr. Stratton about treatment. He may even know of someone in Canada he has consulted with. I'm sure he'd be willing to consult with your current doc if he's willing to call the expert to consult.
 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60

Thanks, Jim and everyone!  I didn't even know Dr. Stratton was in Tennessee for some reason (CFS brain fog - my defense for everything:):)  I didn't know he saw patients either (thought he was more in research.....) 

It would be a little shorter to get to Tennessee and a wee bit cheaper too.  I find if I have to fly it is better if I can break it up into shorter flight bursts in case I end up on a hot plane (my nightmare version of 'snakes on a plane').  Unreal I could fly all over the US for the same price as a 50 min flight to Toronto pretty much!

Much to think about.  It looks like I might have to travel for abx no matter what as I know for sure there is a snowball's chance in **** that I will ever find someone here, and not sure I want to spend the energy trying to convince someone who is inexperienced or resistant either........ 

I will try to use NAC, Colloidal silver (or Oil of Oregano) plus Vit D in the interim between my current doc stopping and whoever I go to next......You see, I don't want to lie to my current doc that I am getting better if I am not, as then he obviously would not be managing or helping with my die-off problems, nor willing or able to adjust the protocol and adjuvant therapies as needed.  Seems most of us who end up here are pretty complex and have had a very long journey by the time we end up on someone's doorstep who can potentially or legitimately help............    

Pink

FM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....

 

PinkFM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.37 yrs old, sick since age 26 and still trying to find a way back to health..... 

I'm going to stick my neck out here, because as I keep repeating I'm not a doctor or anything near an expert, but if you are only taking one antibiotic (Doxyxyline or are you taking 2 bacteriostatic ABX?) and you are suffering from Cpn then it is difficult to see how you could see improvement.   

To give you an example: I have alopecia areata (relapsing remitting baldness) and the hair has grown back four months into the treatment of 3 ABX, it still as some way to go but people don't look round at me in the streets any longer.   I have a friend who does not have as severe a case of Alopecia as I have who has been prescribed doxy for her condition and nothing much has happened in the same length of time.  

The other thing I suggest is that you take a look at these two links which are informtations others have used to get doctors to help them.   I'm not sure if you health system is the same as in the UK where it is very difficult to interview a doctor before joining his practice, but if you have the freedom to choose then one of these documents, adapted to your own case might help with the foot work.

http://www.tiny.cc/145r4  Letter to doctor

http://www.tiny.cc/OxDbr  E-mail to doctors

 

Hope some of this helps you get the treatment you need. 

 

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

 Pink- I agree with Michele. It's unlikely such a short period on monotherapy would show much in this condition. Since your doc was so honest about his ignorance, perhaps he'd be willing to seek consultation with Dr. Stratton. A number of docs have been helped to understand the expectable sequence by having such an expert at their elbow. Go to the Vanderbilt site, look him up, and come in with his office number for your appointment.

There are also a few Cpn familiar docs in Northern Ohio. I don't know where you are in Canada, but it may be drivable? If you have to fly, by all means seek out either Dr. Stratton or Dr. Powell.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60

Hi Guys,

Thanks so much for the info Michele (very helpful), and your thoughts Jim!  

When I started the CAP at the end of Sept 05, I built up to the full Doxy dose and full Zithro dose in a matter of weeks.  I was also taking NAC at the time.  I obviously went waaaaayyy too fast, and was having such bad rosacea reactions and thermoreg issues that I had to back way off.  So I cut out Doxy altogether, and just did Zithro alone (with no NAC) for about a month.  Then I very gradually reintroduced Doxy, starting out very very slow.  It is only in this past 4 weeks that I have been taking the full Zithro (which I have been all along, seem to tolerate it better), and almost the full Doxy (200 mg on the non-Zithro days and 100 mg on the Zithro days).  So all in all, I've probably only been on the close to full dose of those two for about 6 weeks out of the last 4 1/2 months!  I don't think that my doctor is realizing this at all!!!!

When I saw him last week, he wanted to cut me off right away!  I kind of pushed to stay on longer saying I had some confounding issues (severe allergies and stress right now) that would make it hard for me to recognize any improvements (said for his benefit, so I could stay on!), and also that this was "all I had" in terms of hope for something to get better.  His compromise was 6 more weeks, go off for two weeks, then come to see him to see how I was doing after being off them for 2 weeks.  Knowing his personality and temperament quite well, I don't feel there is much hope he would ever consider giving someone a call, especially considering I have no proven Cpn infection for a starter.  I'll have to consider everything in detail, as I mentioned I also need this doc for my insurance issues so I don't want to push him too hard (he is easily irritated).  I will also talk to my regular doc who was the one who made me go to Doc #2 to see if she will reconsider - she is more likely to call someone than him.

Thanks again guys, you're the best! 

Pink

FM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....Started CAP end of Sept 05.  Took 3 months to work up to almost full Doxy dose and full Zithro dose.  Never got to Flagyl.  About to be cut off by 6 month mark.

 

PinkFM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.37 yrs old, sick since age 26 and still trying to find a way back to health..... 

Yikes, Michele!  I just looked at that sample letter (wonderful by the way) and read the part about repeated stopping and starting of the abx causing resisitance!  Yikes!  I never thought of this angle.  If I am off the abx for a period before I find a new doc, that is another risk...........I may risk trying to go back to my doc at the 6 wk mark (before I run out) to see if he will prescribe for me in the interim......I risk making him angry though, and less sympathetic towards me.......... 

Pink

FM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....

 

PinkFM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.37 yrs old, sick since age 26 and still trying to find a way back to health..... 

Red

Oops, never mind.   Pink and I posted the same info concurrently...

Hang in there Pink.  We're pulling for you....

On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Pink - Have I missed soemthing here?  (And I may have, as it's hard for me to find time to keep up with all the posts on cpnhelp these days.)  Before I had a prescribing doctor, I just ordered the abx over the internet.  I was determined no bureaucratic hurdles would keep me from healing myself.  As it turned out, I found a wonderful doctor who prescribed, but I already had the doxy and azith in my hands, ready to start with or without 'permission'.  Sure, it cost more than what I now pay through insurance, but I would go without food before I would go without my meds.  I'm sending positive energy your way; there HAS to be a solution for you.

Wheldon protocol for MS, started 06 Oct 2005 and doing quite well hopping, skipping, jumping and generally living my life the way I always did before, thank you very much!

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

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 MacKintosh,

I guess I'm just a little more than paranoid in that dept, although I do admire the hutzpah of those who (rightly and out of desparation) do.  It is certainly another option to consider.

I think one of my problems is I am lacking in "conviction" here.  I hear all the positive stories and rejoice in them.  However, I've become just a little too jaded for my own good, and almost need to "see to believe" at this point.  And since I haven't "seen", it makes making the decision about the next step (finding another doctor (at possibly great financial cost), going the online pharma route, etc) so much more challenging.  On the other hand, my gut tells me this is my last hope and chance of getting better.  I am gravely disappointed to be pulled off so early - what a let down!  I didn't even have a fare chance!

BTW, just noticed I said on CAP since end of Sept 05 in the last post, that should have been 2006 of course.  I've only been doing this for 4 months - sorry guys my brain absolutely cannot compute things these days, its all over the place............ 

Many many thanks again to all of you who have responded and given me alternative suggestions (and hope)!

Pink

FM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.
37 yrs old, sick since age 26 and still trying to find a way back to health.....

 

PinkFM/CFS, Celiac Disease, rosacea, Raynaud's, peripheral neuropathy, etc.37 yrs old, sick since age 26 and still trying to find a way back to health..... 

I think it was Rica that said seeing is believing when she saw the pictures I posted of my hair recovery.   I am still waiting for the more painful ailments I suffer from to get better, but my hair is an indicator of the other stuff that is going on inside my body without obvious improvements.   What I am trying to say is that work is going on inside which you may not be aware of, so don't give up and if you want to see what has happened to me take a look here.

I have to agree with Mac, you are getting to know how your body reacts and are making decisions for yourself about dosage so it is only a short interim step to take to get the antibiotics on the internet.   I use edrugnet.com for my supplies.

Michele:  on Wheldon protocol since 1st May 2006 for a variety of long standing ailments including IBS, sinusitis, alopecia, asthma, peripheral neuropathy, also spokesperson for Ella started Wheldon CAP 16th March 2006 for RRMS

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.