Co-infections

For a long time it has been fairly obvious that some of us have something going on besides C. Pn.  It has been brought up repeatedly, and for some of us has lifted its very ugly head over and over stubbornly.

My beginning was Rifampin and Doxyi, followed in four months by flagyli.  I was then flattened for almost a year and a half, most of which I cannot find in my fog of memory.  After four years and four months, I quit, thinking I had gained all the benefit I was going to achieve.  After that  I sank rapidly nearly back to where I had been four years before.   Now, I have been battling with all five abxi for three years, and have regained lost ground and much more,  but am still not all the way - whatever that may mean.

My thought is that those of us who don't get where we need to be ahould think seriously about Rifampin and Amoxicillini in addition to ...

There are people here who KNOW first hand about the Lyme protocol and I hope will speak of it.  I spent my first six years in tick country and came home from all-day rides in the Indiana State Forest covered with ticks, so I may very well have had some "co-infectionsi".  There is much that we here don't know - we are learning more FIRST HAND every day.  I have four sisters who were with me on those rides, two of whom have MSi, one chronic bronchitis, and one with rosaceai.

Rica.

Rica,  even the dosages of the Rifampin and Amoxicillian are not what is required for Lyme or the co-infectionsi.  This advice is detrimental in the event someone may have babesia or bartonella! 

Is it really wise and responsible  to encourage others (we are not doctors) "who don't get where we need to be" to just throw in more meds? Especially if there is a possibility of the Co-infections, it is only a continuation toward failure.

I do not have any animosity nor want to cause discord,  it's just sometimes suggestions such as this are detrimental.

Yes, you have treated,  been through hell and I laude you for that.  . I'm sure to you it doesn't matter what you have, or had, but rather the ABXi has gotten you well and you continue to take it and that is great.

I make these statements with all due respect to your knowledge and what you have been through here....  I am not trying to cause discord, but blanket recommendations about adding additional antibiotics to everyone can have serious health repercussions even if they are made with good intent.

Ultimately we each are responsible for ourselves......but those who are desperate, sick and brainfogged can be easily mislead.

Peace...

 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

My intent never is to mislead, and I have never given "medical advice", always qualifying anything with "I am not a doctor" and "This has been my experience".

I do strongly believe that those of us who have had years, even decades, for this stealthy bug to become deeply entreched must not become overwhelmingly discouraged, thinking, as I did, that we are "finished".   Starting early seems to have a dramatically faster outcome.

We are here to work on C. Pn.  I'm sure that many of us have "other infectionsi", but I can't help with those.  If our protocolsi don't help - and, in almost every case, there has been something beneficial, then going back to the original research may be the key.  That has certainly been true for me.  As Mac has said "If I have to do this for the rest of my life, I can".

Rica

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

Perhaps Jeanne can tell first hand what the Lyme protocolsi are that she feels should be common knowledge from her investigations.   Maybe some helpful links for folks wanting to explore the details of other options would be in order. 

I think that Rica was asking for someone to share information to provide help to members investigating other persistent bacterial infectionsi.     Timaca's soap box is pointing out potential viral components as in her case.   Perhaps Jeanne can step up to the platform and share the wealth of her internet searches for those that might like to know more about other options and protocols for treatments.

One thing I do know about Lyme treatments in the past is that the almost always laid people out flat till the person called uncle and took a break, that is what I get from my community at large as the way people have experienced it.

CPni is a complication for any persistent infection if it is on board it kidnaps the energy capactiy of the cells and uses them for it's own life functions.   Getting this undercontrol, and easing into any of these treatments is a must for many fragile, sensitive people who because they are such, have more trouble than the hearty sorts that just carry their pesistent infective load and thi;nk it is just aging etc that is getting to them.

Thanks for bringing the elephant out of the closet and into the room Rica.  I have always found you wanting to be helpful and open to other options.   All of us want to share what works for us, myself included and sometimes that is met with an uproar!

Louise

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

It has never been my intention to mislead.  I always qualify with "I am not a doctor" and "This is only my experience".

We are here to work on C. Pn., and for those of us who have had years or even decades (I am 72) for this stealthy bug to become so deeply entrenched that the modified protocol may not "do the trick".  For me, that is certainly true.  I do not want anyone to become discouraged and stop, not knowing there may be hope ahead.  For those who begin earlier in the course of infection, the course of "cure" seems to be diminished much faster and more dramatically  Myrapee is a wonderful example.

Rica

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

Not intending to discourage anyone, here is my cautious take on this.

Initially I had Lyme (Borreliosis Bergdoferi),  contracting Cpni plus Bartonella Like Organisms & Cryptostrongilus Pulmonii 2 years later. There is also the possibility of microfilms & many other opportunistic infectionsi being present.

During the first 6 years a friend & I were fortunate enough to be treated by a LLMD. We are in England. Now all such practitioners have been stopped by the BMC for using "novel" treatments, so we have to guess what to do as we don't have the resources to travel abroad for treatments.

She is much iller than I am, & being a microbiologist with neuroscience experience, very knowledgeable. She varies her abxi. I continue with the last treatment recommended 18 months ago & take 50mg Minocycline daily. It is working in as much as I am very slowly improving, but I wonder how much faster recovery might be if I were still having regular blood tests & adjustments in treatment?

The problem here is that different abxi protocolsi are required for individuals, depending on which particular organisms are attacking them. My friend had Borreliosis Bergdorferi with some different co-infections to mine including Babesia, so her treatment was different.

There is also the fact that some patients are intolerant to certain drugs, e.g. Metronidazolei caused me to have loose bowels.

Apart from fatigue, severe brain fog is one of the most limiting symptoms. Self treating from the outset could be beyond many patients' &/or their family/carers ability.

Clare

 

 

Clare, Point taken and when there is no assistance to be found after a prudent search for a treating practitioner,  you do what you have to do to get treatment for that which you can treat  and continue to be on the look out for a practitioner who will pick up the ball later on in your treatment.       

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

wrong comment in wrong place.

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