Frequently answered questions? Input, please.

Old-timers, this one's for us.

I'm thinking an updated FAQs page is in order.  Those Frequently Asked Questions that are critical to newbies, but we've all answered them about a zillion times, are the ones I'm talking about here.

Please list your all-time 'favorites' (and the answers, if you've got the time).  I'll find a way to edit them into our FAQ page, to make it more convenient for the new members and a bit less repetitious for our public discussion boards.

Keep it simple, please.  Remember how brainfogged a newbie can be, when they first come here.

I think this is a good idea.  I  would like to suggest that could people please confirm in their signature what type of MSi they have, not just MS.  For example, PPMSi or ... That is if u have MS.

 

 

Looking for frequently asked questions here. 

(As for signatures, medical details, locations, etc., the website owner has made it clear he will never require anyone to give any information beyond a screen name and an email address.)

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

That is such a great idea - I hate to keep asking you all experienced people these questions. Thank you all for your patience!

this is a wise and needed decision.

diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,

I only got inffected 10months ago. Two weeks ago (before I started CAPi) I was almost dead, but now I already feel good results and nearly no simptoms, very few reactions. 

I developed "PPMSi", although never diagnosed becauses the lesions were "unlike MS" Ones.

So a common question for those already is progress would be:

Once I feel no reaction from the antibioticsi any more, even within a few months, does that mean I will be free of getting reinffected after a year? The load of Cp. Or the time you have been inffected is the matter, correct?

Because many people do not feel conffident to finish with it after one year and go on for 3, even 5 years. I hope it makes sense to all. 

"I almost gave up, I said to God if he could not cure me an angel as a doctor, then do not let me suffer any more. The next day a friend of a friend who is a doctor came to see me (I had had two mini strokes because of the lesion in my brain) and  I could barely speak, but showed him the video about Cp. He did not hesitate and took care of everything. Well, I never new the guy, and he enbraced my case coming to take care of me everyday. So I thought he is the angel doctor sent from God. I probably would have died after a few days.

I feel the cure already in me and I will do my best to share this with my compatriots in Braziil, that, like HIV, and others, this is another MYTH the men have kept to destroy people's lives. MEN'S FAULT."

 

Francisco  Jr.

Probably the first person in Brazil to find out about it.

Faith and peace to all

 

Just copy-n-pasting from my other log. Plaese edit as needed.

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FAQs:

1. What is die-off?

When the Cpni dies it releases endotoxinsi which create what we call ‘die-off effects’ or ‘herx reactions’. This often presents itself as feverish flu-like symptoms, sinus issues, aches and pains. It can also create an amplification of symptoms related to the patient’s ‘auto-immune’ disorder. If the patient has weak legs, they will become weaker. If the patient has pains in their joints, they will become worse. The important thing to remember is that these episodes are temporary. They are not a sign that the condition has progressed.  Often people panic and stop treatment when they experience die-off. That is, of course, the worse thing they can do. Once the infection is cleared, the body will heal and any lost control will eventually return.

2. How long do I have to be on the CAPi?

You should stay on the CAP until you are no longer experiencing die-off, this can take a year or three to five years, depending on the patient's level of infection. Cpn is sneaky and hides in cells. It’s best to continue with the protocol a little while longer, just in case, and then consider intermittent treatment.

3. What is intermittant treatment?

Intermittant treatment would entail cutting back the first 2 antibioticsi (Doxyi and Azith/Roxi) to a 14-day course, taken once a month. In the middle of those 14 days, the patient would insert a five-day course of the third antibiotic (Metroi/Tinii).

4. How can I prevent reinfectioin?

N-acetylcysteine (NACi) is an amino acid that can kill Cpn elementary bodies (the life stage that spreads the infection). NAC should be continued well after treatment and possibly for the rest of the patient’s life, since it will prevent re-infection.

5. What is Candida?

Candida is short for Candida albicans, a troublesome yeast that can adversely affect various parts of our bodies. The problem is…..Candida naturally lives in our bodies. You can’t simply get rid of it.  It normally lives in harmony with the rest of the microflora within our GI tract.  When something upsets the balance the yeast will start to overgrow, invading tissues and wreaking havoc.  

If you’re undergoing a CAP for the treatment of Cpn, there is a really good chance of getting an overgrowth of Candida. The antibiotics in the CAP will kill both good and bad bacteria, upsetting the microflora balance. This doesn’t mean that you shouldn’t do the CAP, but rather make sure to take plenty of probiotics, and take advantage of natural anti-fungals you can incorporate into the diet. Think of it as preventative mantenence.   

6. How do I get tested for Cpn?

This very persistent bacteria can live in cells, making it at times invisible to blood tests. False-negatives are very common. A more reliable test is the NAC test. N-acetylcysteine (NAC) is an amino acid that can kill Cpn elementary bodies (the life stage that spreads the infection). Their destruction would cause respiratory (sinusitis, runny nose, mucuous…etc) and flu-like symptoms. To perform this test, the patient should take 2400 mg for a couple of days. If they feel miserable, then they definitely have Cpn. This supplement would not make a non-infected person feel sick.

If someone needs to be officially tested, to assure themselves or convince a doctor, I would suggest using IGeneX, Inc.<, they are a laboratory that specializes in testing for Lyme and Tick-borne diseasesi but have added in Cpn because so many people who are sick with Chronic Lyme also have Cpn. A kit can be ordered from them which is sent back with a blood sample and a doctor’s authorization.  The tests are #295 (Cpn IgGi) and #296 (Cpn IgA). IgG = Chronic infection and IgA = Acute Infection.

This is great Jen - you helped me before, I believe with "pulsing" steps.

In regards to #2 -  Personally, even though diagnosed with cpni, I don't feel I have really experienced die-off symptoms ( and hope not to ) - well maybe a little congestion, but as I normally have arthritis pain really hard to tell.

Therefore for me, and perhaps others, it would be difficult to tell when I have gotten rid of it and hence when to on on intermittent or stop. Any tips there?

I haven't pulsed yet though, soooooo

Linda

I'm sure Mac will change things to "often patients experience die-off in the early stages of the CAPi, but some do not....

Plenty of room to tweak.

Oh I don't think you need to amend anything - I was just asking this... it would be difficult to tell when I have gotten rid of it and hence when to on on intermittent or stop. Any tips there?

Meaning to say that it is rather nebulous for me at this point and I sure wish I could test say after 6 months to see....

I'd suggest you wait til you're pulsing. Some people don't experience die-off til then. Wish I could help more.

Oh you are always helping - every little bit counts!

Could we stay on topic, please? Thanks! Cool (LuckyPenny, absolutely go ahead and start a new post about 'how do I know when...')  

OLD-TIMERS here, please list the most FREQUENTLT ASKED questions you can think of. 

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

You're right - easily distracted hehe brain

Hi there MacKintosh -

Your comment "Old Timers" caught my eye.  Hehehehe.....  Being in my 7th decade (60!!) - I think I might qualify on that alone!

These are the questions I thought of and through reading this site have formed some of my own answers.  I won't pose the answers here - but wiill pose the following 21 questions, more or less, that I believe lots of people might be thinking of.  Some of them no doubt may duplicate questions others have already posted.  I didn't check, but just jammed these out, cause I've been thinking about this stuff for a long time!

All of you experts on these subjects - and this site is full of them because many of you have very personal experience with this (I'd argue I have to, as the father of a son badly disabled by MSi right now, but will admit that's not quite the same but of course), can chime in with the answers based on first hand experience:

Other potential FAQs:

 

  1. How will I feel while on the capi protocol?
  2. What are the worst symptoms I might experience?
  3. For each symptom, what is the suggested course (e.g. for stomach issues like queasiness – consistent use of probiotics).
  4. What might be the first signs the protocol is working?
  5. When might I expect to see those signs?
  6. How long, in general, does it take those signs to show up?
  7. Is there a range of times that the first improvements show up on?
  8. Of course, because it will be asked – is there a “success” rate?  E.g. what are the odds this protocol will work for me.  For these questions – if they are to be considered for FAQs – I believe that with disclaimers it’s valid to point to existing studies, and the historical set of studies by Dr. Paul Le Gac in David Wheldon’s site that includes strong anecdotal evidence, as well as the study of 9 or 10 patients published somewhere on this site.
  9. What might happen if I have to stop the protocol for some reason?
  10. Does it make sense to consider “tweaking” the protocol, e.g. substitute like drugs (minocycline with doxycycline, tinii with metroi, either of those with rifampin?
  11. What symptoms might mean it’s a good idea to change the protocol a bit?
  12. What role do the various supplementsi play?
  13. How critical are they to success or ease of living through the various protocolsi?
  14. Are there other potential co-existing or exacerbating conditions to consider being screened for?
  15. What are they?
  16. Are there treatment options for those co-existing or exacerbating conditions?
  17. How much “support” might I expect from this group?  (lots)
  18. Are there any really funny people on this site?  (Supaguy, vega person, others?)
  19. Are there any web search terms or phrases that might help me find more information?
  20. Ah, here’s one – and it’s both fairly personal and I also met a business colleague who has a family member very far along …  How far along perhaps in terms of EDSSi scale have people been able to halt and reverse this disorder, and how far have they been able to recover?
  21. What are the risks involved? Can they be mitigated?

Best & highest regards to every one here.  All of you brave souls fighting this nasty disease have my admiration and best wishes and prayers for as fast and smooth a recovery as possible.

MS can kiss my butt!! 

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

What baffled me in the beginning was how to fit the supplementsi and medications in my day, what to take with what, an easy to understand table of how to fit it all in. A clear list of which supplementsi you should not take at the same time as the antibioticsi

Thank you, Maree. 

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

Early on ( some years ago) I could not actually find a recent version of the protocol. There seems to be a few around? So maybe an updated version would be useful.
Thanks for asking

CFSi 32years/FM 14 years/ CRPS 5 years/.  Previously MPi 5 years. Off everything since 01/12/2012.

 

.

If I had to place a bet on which was one of the commonest mistakes when doing this protocol, it would be taking doxyi on an empty stomach.

Hey, I made that mistake and had to learn and I think that so many others have too.  I have typed out the words " .. . to be taken with some food and plenty of fluid ... " just so many times; and yet people don't always get it.  I know a lady that had been taking doxy without food for two weeks or so ... no wonder she felt queazy.

If the were a list of answers that "You must get into your head" then I make this one number one.

There are others that follow on, such as "When do I start taking the 2nd doxy?"  And "Should I start taking the macrolide before starting the I start taking the 2nd doxy?"

The most common misconception seems to be that this protocol takes a year to complete - so by definition - after 7 months or so, one should be well on the way to wellness.

The question that will pop up in the minds of lay persons and doctors alike is "Why are you people engaging in this madness of constantly taking all these antibiotics ... don't you realise, they won't work when you really need them, like when you have got a genuine infection?"

Another less common, but relevant set of questions has got revolve around buying antibiotics from abroad (and whether it is leagal) also, whether it is legal to purchase abxi without a valid doctor's prescription.

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

(duplicate post removed)

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Supaguy, What I'm looking for - on this topic - is "hey, old-timers, what are the questions you've answered over and over and over again and are sick and tired of repeating yourself about'.  I'm not looking to rewrite the entire site! Cool The FAQ list can't be used as a replacement for reading the site and learning the protocol.

As for purchasing prescription meds without a prescription, well, I think everyone KNOWS that's illegal, otherwise a prescription wouldn't be required.  I do plan to put a disclaimer somewhere, though, to remind people that talking about it, soliciting information to be posted on the public board and BOASTING about having done it, will likely get this site shut down by government authorities and may well get the poster a lot of governmental attention they don't want.

I'm adding 'not taking doxyi on an empty stomach' to the FAQ list, because so many people ask 'why am I nauseous after taking doxy'.

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

My most frequently asked question is "Where can I buy these antibioticsi from" and to answer it is getting more difficult due to the medical powers that be, working with Interpol, trying to shut down all the online pharmacies, some of which are scammy but most not. My answer is going to have to be "Look yourself and try to trust  your own judgement".............................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

This would be so helpful for everyone Maree!

For me, taking doxycycline on an empty stomach (but with plenty of water) wasn't a problem, provided I followed the advice not to lie down for half an hour after taking it.

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