27 Apr 2018
Author
Rebecca
Title

Contagious during "relapse" (Concerned family member)

Body

A family member was diagnosed with cpn.  The person has had CFS for over 20 years and has been hospitalized for pneumonia.  Last year they started on a program similar to that described on this site, but not using the same protocol.  Fewer antibiotics, and other things. This family member really doesn't seem to be getting any better, but we know that the "die-off" can be very troublesome, and having had CFS for many years and had no treatment for it makes this a long-term, challenging situation.  I have two questions: The family member continues to have upper respiratory disorders (infectio

Comments

My answer to your questions will have to be another question: why don't you start this 64 year old on this protocol?  S/he is the almost as old as I was when I started it, and it sounds,  in pretty much the same mental state.  It has not been easy, except on my "good days" - and it was a while till they began happening.  My questions to myself were: what is there to lose and do I have something else pressing?  The answers were, obviously, not much and no.

As for the contagion, being on the protocol would take care of that.

Rica

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

Thank you for your reply.  This family member has seen Dr. Powell. It has been over a year now.  He seems much worse now than he ever was before.  However, finding this site and reading everyone's comments help us to understand that it isn't that the treatments are bogus but that it's possible to get much worse before you get any better.

 

A Concerned Family Member

Thank you for your reply.  Our family member is on protocol for over a year now with Dr. Powell.  Process seems to be very slow, but our family member is continuing.  True enough, nothing to lose and perhaps better health to gain.

Rebecca

A Concerned Family Member

   Rebecca,

   I think the information needed to answer your question on Cpn being contagious in the family by a family member or anyone else is hard to answer.  That knowledge is now just being studied in research and may be a while to accurately define, maybe a long time out.  Certainly Cpn is contagious somehow or it would not exist and most likely less so while under CAP medication or NAC as it reduces the elementary body phase of Cpn. There are bodily fluid tests and I have taken a few to directly test for it although not very accurate, blood, urine and respiratory tract.  The indirect testing of Cpn by antibodies and the NAC test presently seem a better indication tied with symptoms.  Since it is a house hold member if it was me I would test everyone in the house hold with a Cpn antibody panel, IgM, IgG and IgA as the test is not that much.  A NAC test is also easy and inexpensive, maybe both. 

   The member you describe seems to fit some of the symptoms as listed under Dr. Wheldon's "M.S. personality changes" which can be found as a link on this website home page, you might want to read it.

   The last question about power of attorney is really a legal and family counseling question.  Have you thought about a good family counselor for a bit as that is what they do and may have some very good insight as well as an opinion that has great merit with the "eyes of the court".

   Maybe this will help.

Cpn, Mycoplasma, Chronic EBV, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAP (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NAC(2.4g/day), D3(15,000IU/day)

Thank you for your thoughtful reply.  I will read the "M.S. Personality changes" to see how it fits.  We do not seek a court-ordered incompetancy determination. We had been thinking it could be helpful, not harmful, to be able to assist in sorting out financial affairs which seem to be one of the very challenging things facing our family member.  Until 2 years ago, a spouse took care of all finances, etc. Handling personal affairs now have been exhausting and stressful.  The CFS + the treatment have reduced to even more the energy and mental acuity needed for some of the decision-making, financial planning and life-changes that faces our family member. Your words of support are appreciated.

Rebecca

A Concerned Family Member

I'm not an expert, but I thought I heard a statistic that 50% of the US population had been exposed to CPN. and it my understanding that There are viruses and bacteria everywhere. So I don't know....be tought to live in constant fear and I think it may be a good idea to just get on the vitamin protcol to avoid cpn or any other disease floating around society....

just my 2 cents

CPN off the charts, EBV, Chronic fatigue 20+ yrs, , tinittus, Orthostatic intolerance, adrenal fatigue, excitotoxicty, porphyria, anxiety, depression, doxy, AMOX, and FLAGYL since JAN 2009,  

   The body is full of germs, viruses, bacteria and others.  Constantly exposed from birth and even a time after we are dead.  Some are needed, some just are just tolerated and some are very destructive.  If the bad bugs get in and find a home then trouble starts.  I have read that the germs themselves might be generated in our body from cells, viruses and maybe even bacteria through mutation of DNA.  The first key is a healthy immune system for the most part and then if a very damaging bug is passing through avoidance.  Places with high levels of germs like schools and hospitals exposes the body to a environment with high pathogenic load and the immune system just gets overwhelmed.  It seems more of a less pathogenic exposure and a healthy immune system helps.  Then sort of the opposite some exposure helps build immunity for some germs, part of being sick when your a kid pays off later in life.  Very little I have read is absolute about the immune system and even less so with germs, exposure to them and the effects.  It seems it is just at the beginning of understanding this complex process.  Maybe that is part of why we are here just along for the ride to host germs, they certainly have been with us forever. 

Some thoughts about bugs.

Cpn, Mycoplasma, Chronic EBV, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAP (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NAC(2.4g/day), D3(15,000IU/day)

 CPN is an air borne infection and it's obviously contagious. But it's everwhere. Thare are many people having CPN spreading it, most of them are asymptomatic. Even you alienate that people, you will get into contact with many people having CPN. The important point is that; if you have a healty and powerfull immüne system YOU can beat it and your immüne system can eradicate it. But if your immüne system is not powerfull enough CPN will get an chronic phase. There is nothing can be done against this. Alienating that people wouldn't be a solution because you come across to many other people carrying CPN many times in your life. CPN may live in your body causing no symptom or problem ar it may cause some disease in years.

 yılmaz.

KEREM'S TAKECARER;Suspıcıon of MS (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Mark, The statistic is SEVENTY percent of people have been exposed to cpn bacteria by the age of 50.

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

Rebecca, To answer the questions you asked... 1) Yes, a person can be contagious during an active lung infection. There is no need to contact a doctor over concern about contagion; just take normal precautions as you would with any cold or flu. 2) Power of attorney sounds pretty extreme. And, since most doctors haven't heard about cpn infection, I'd be betting most judges haven't either. For that reason, chances are good a judge wouldn't be interested in hearing the case, should you bring it.

Better to be of help to the family member while they are recovering from this disease than to strip them of their rights to determine the course of their own life/finances/relationships.

You say s/he is on a protocol with fewer antibiotics?  Killing this disease requires three very specific antibiotics, in order to attack the bacteria in all of its various life stages.  I would be FAR more concerned with correcting THAT situation than involving myself in their legal issues. And, once their medical treatment is corrected, their recovery makes 'power of attorney' unnecessary, anyway, since they'll recover their judgement and faculties and be able to do everything for themselves in the future.

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

MacKintosh, thank you for taking time to reply to my questions. It seems that many people are unfamiliar with POA. It is not at all necessary for it to be a court-ordered determination.  Anyone can request a POA for medical care. It can be extremely helpful to have someone else who is able to assist with managing affairs when there are serious challenges.  Voluntary POA does not strip anyone of their rights.  There has been a great deal of info in the news in the past about Durable Power of Attorney for health care.  It is a very important step to take.  We never know when we will be temporarily, or permanently, unable to make our health care decisions.  The right person knows what you want and will fight for you.  Being able to have someone who can help you with your other affairs is equally beneficial.  We are the ones who guided our family member to a physician who does practice this protocal.  In the meantime, during treatment and recovery, we want to provide whatever we can because we love our family member.  Perhaps an explanation on this website of what of Durable Power of Attorney for health care is about would be very useful.

 Rebecca

A Concerned Family Member

Rebecca, all your questions have been answered, but I would just like to add to Mackintosh's reply and say that it is far better to get this 64 year old family member on the proper full treatment than think about power of attorney which is in my opinion downright insulting unless someone is really suffering from extreme dementia, which this person obviously isn't...................Sarah

An Itinerary in Light and Shadow

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.

Sarah,

By now, I have replied to many and you will have learned that this family member is following treatment that his physician (referred to on the web site) has prescribed.  You do not know our family member, nor the situation our family member is in; I would like you to understand that POA does not have to be an insulting act.  It can also be a loving tool when family members are working together. I think I have said enough about that in other replies and hope that people will now thoroughly understand that we were the ones who got the family member under treatment by Dr. Powell;  we are the ones who are supporting this family member emotionally, mentally,financially and with love. Please, do not make the assumption that having the legal ability to help someone is insulting.  If you have not seen the benefits, don't assume that it is only harmful and degrading. And for single people, it can be life-saving - medically and financially.  

I appreciate helpful responses.

Rebecca

 

 

 

A Concerned Family Member

Rebecca,

Hello and welcome to CpnHelp.  I hope that you look around the site and find some good answers on Cpn treatment.  Plese go the the Getting Started and the Cpn Handbook tabs at the top of the page and do some investigating.  I echo the answers above from Katman, Mackintosh, and Sarah.  They are the veterans here and have incredible experience and knowledge.   Please listen to them.

You obviously care about your family member, or you wouldn't have come here.  Some parts of your post makes it sound as though you're just thinking about how to make it easier on yourself, but your last question regarding how to be a good family member shows that you do want to help this person.  I can give you some perspective from the other side, as I've had ME/CFS for 18 years myself.

First, the brainfog associated with ME/CFS can be very frightening at times, but it is not dementia.  We do strange things sometimes, but our faculties are fully present.  Without you describing exactly what type of problems this person is experiencing, it's hard to tell exactly what's going on.  Perhaps, if it's as bad as you seem to say, there is something other than ME/CFS going on.  If so, the person should be treated for that.  In my experience, the brainfog was one of the first things to improve with the CAP!  It still comes around when I'm very fatigued or overworked, but it's much better overall.

If it's truly the brainfog associated with ME/CFS, then what your family member needs is help from his/her family.  Those of us who have ME/CFS very much desire to be involved in our own lives, but sometimes, as you say, that is a bad choice.  When we try to do too much, we can crash very hard.  The best answer is to be there for the person and to help when he/she needs something done.  Maybe you can do it along with the person to make sure that the person is able to feel a sense of accomplishment without overdoing it.  For myself, for instance, during bad times a trip alone to the grocery store could be devastating.  My husband at some point, without my asking, decided he'd always go along to the grocery store with me.  Just not having to drive and do everything by myself has made those trips more tolerable.  Also, if I'm doing too poorly, he takes my list and goes himself.  I might not get everything exactly as I would have selected, but it's a huge weight off my shoulders.

If it's brainfog, see if you can be of help with bill paying, etc., simply by double checking to make sure everything is getting done and is done correctly.  Help with organization, etc.  I once wrote a check to the cable company for the entire balance of my checking account instead of for the amount I owed.  Luckly for me, the cable company noticed my error and called to find out why I had written such a large check.  This kind of thing can happen to anyone, but for the brainfogged it's something you have to realize and pay extra attention to.  We don't need people to take over for us, we just need some help. 

There are many other areas of life where I'm sure you can see a need for help (without taking over) and pitch in.  this can make all the difference.  Help the person to get needed rest but to still remain involved in life to the extent that the person can.

As for the repeated infections, it sounds as though your family member's immune system is in need of some bolstering.  In addition to your concern about keeping other family members from becoming ill, you should also help the ill person to keep from becoming ill so often.  The CAP is the best way to get started on this.  In addition to the antibiotics, there are supplements involved in the CAP that can be very helpful in keeping these infections away.  Last winter was the first in many years that I did not become ill at all.  I attribute this not only to the CAP, but also to the valuable supplements that go along with the CAP. 

I believe that the particularly helpful supplements as far as helping the immune system are the Vitamin D3, the Vitamin C, and the probiotics.  I also use the EmergenC packets (a powdered combination of Vitamin C, B Vitamins, and minerals) twice a day, and I believe this has been of great benefit in helping ward off illness. 

Of no less importance is hand sanitizer.  Keep bottles of it around the house - in the kitchen, in the bathroom, at bedside.  Everyone can use them often.  You can also get small bottles to carry with you.  Washing your hands, of course, is just as good.  Everyone in your household, along with your ill family member, need to do this.  Remember that even if the rest of the people in your household are not becoming ill, they are bringing home germs that can infect the person with ME/CFS.  Keeping your hands clean is the best way to avoid spreading these germs.

Again, please research the CAP protocols and see if there's any way your family member can get started on this.  Having been diagnosed with Cpn is just a start.  The correct protocol must be used to eradicate it, or the cycle will just continue.  Keep in mind that this protocol is not a quick fix, but it can potentially be lifesaving. 

Please come back and let us know if you and your family member make any progress.  There are lots of people here who care and want to help. 

ME/CFS is a very difficult illness, and those of us who have it need lots of understanding.  We don't want to be ill!  We want to be just like everyone else, and it's hard for us to accept that we just can't.  That's why we fall into the cycle of overdoing and relapsing so easily.  Some understanding and help from family members can be the best medicine for us.

Thank you for caring enough for your family member to come here and ask questions.  You've come to the right place if you want to help your family member treat this very problematic infection.

Take care,

Finch

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

Finch, thank you for your long and thoughtful response.  A close friend of mine and his wife have been very intentional about managing what they consider to be one of her important assets - her energy.  They have done things in much the same way as you and your husband.  As family members, we have had discussions about the brain fog challenges, the fatigue of doing something that might seem easy, but ends up in a relapse, and have heard the cry of wanting to be able to live like everyone else. Lots of understanding is important.  If we were in the same state, it would be possible to handle things very differently. We aren't, and don't know if we ever will be.  That means we can't do many of the things that you have suggested.  But we can do some things that include help with financial problems, legal issues, moral support when feeling down about not being able to do work at all, etc.  Truly, we don't want to take over their life.  However, because of some of the critical decision-making our family member faces, we want to participate in the process. Bad decisions on the part of our family member does affect us. If we ultimately have to provide our family member with a place to live and money to live on, we will do that. But if we can discuss those issues first as a family, perhaps that can be avoided, or at least, delayed, through thoughtful discussion.  

I appreciate your heartfelt sharing and the care you took to be courteous. 

Rebecca 

 

 

A Concerned Family Member

Rebecca, if a person is older and has a bigger bacterial load, one year may not be enough time to see some major improvements. I am speaking from my own experience. Bioidentical hormones made a big difference in how I felt in addition to the Cpn treatment. This can also help cognitive issues.But if this person is experiencing die off then brain fog is to be expected.

I am also having Dr. P. treat my 86 yr old mother and she is going through some pretty rough die off and she isn't even on the CAP abx--just taking NAC, Nitro patch, T3 and the supplements. I am calling her every day to talk her through the treatment. She was getting kind of absent minded like telling me the same story 3 times on the phone. We will see if this improves with time as I expect it may.

Raven

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

Hi Raven,

Wow, you've got your elderly mother on parts of this treatment?  That's so interesting!  My grandmother is 93 and has been having the absentmindedness become quite severe over the past few years.  Please keep us updated on what kind of progress she might make.  This is very intriguing!

Thanks,

Findh

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.

  '' He seems much worse now than he ever was before.''

 Rebecca, do you plan to see Dr. Powell again and do you think this patient's increased symptoms are due to die-off?

 yılmaz.

 

KEREM'S TAKECARER;Suspıcıon of MS (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

Welcome Rebecca, Thank you for sharing here.  You bring up many situations that challenge the lives of those with CFS or any other chronic debilitating disease.   I hope you will continue to be in touch with us, we all have learned here sharing our situations with each other. 

What I find quite unique about this internet community is it goes on to be a source of information and inspiration along the entire course of our journeys on CAP.  This is something that I fail to find elsewhere in discussion communities and I have looked into others.

Please keep in touch with us you bring another perspective to the big picture.  I am very much improved as a result of CAP treatment and it can be a slow process but for myself it was worth the length of it and my treatment is not over yet but I am capable of so much more.  Abilities that I thought that I had lost and would not return have.

Your posts reflect your capacity to look at the whole picture and intervene in an intentionally supportive way in your relatives care.  Blessings to you and yours,   Louise

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

Hi again, Rebecca.  I believe that your family member is lucky to have you!  So many with ME/CFS are left alone to fend for themselves.  It's rare to have family members who care so much and are familiar enough with ME/CFS to even understand the severity of this illness.  The simple fact that you got your family member headed in the right direction by getting to Dr. Powell may be the best thing you could have done.  If your family member is overwhelmed by financial issues and having difficulty making decisions, then it certainly would be a great relief to have caring relatives helping with these issues.

Now that you've given us a bit clearer picture, I think we can all see where you're coming from and that you really just want to help.  I'm sure your family member will appreciate it once he or she is back from the worst of the illness, as you will have been very instrumental in giving this person back a full life. 

Best wishes to you all,

Finch

ME/CFS since 1991. Cpn diagnosed 6/07. CAP started 7/07. NAC 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyl to Tindamax 500mg 2x per day for 5-day pulse.