MediTest
27 Apr 2018
Author
Karl
Title

ABC News Special (NY) interviewed us for our story

Body

Hi all.  This is Karl.  I have yet to post my blog as I've discussed but will be doing it soon.  Recently, my wife and I were interviewed by ABC News (NY).  The special will air January 10 at 10 pm Eastern Standard Time (USA). This is a bit called Primetime Medical Mysteries.  Titled: Lyme Disease as it Pertains to ALS and MS.  They also interviewed Amy Tan (author of The Joy Luck Club- She has MS and is treating with antibiotics- I don't know her details of infection)  Details probably will be posted on their website just prior to the show being aired.  ww

Comments

I will watch it with keen interest. How about doing a "signature" under "my account" so we know your specifics!?!

PPMS diagnosed 11/92. Wheldon protocol. Started supplements 11/15/06. Started Doxycycline 11/28/06. Started Azithromycin 12/9/06. EDSS 6.5 now, hoping for better!

PPMS diagnosed 11/92. Wheldon protocol. Started supplements 11/15/06. Doxycycline 200 mg per day, Azithromycin every other day 250 mg, Pulse Metronidazole 500 mg 3xD/5 days/every 3 weeks, EDSS 6.5 now, hoping for better!

 As will I, Karl!  Thanks for doing this and thanks for sharing all your good news!  The other news to me is about Amy Tan, a wonderful writer.

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

Red

Karl, 85% improvement is amazing news indeed.   Congratulations!!!

Can't wait to see the interview... 

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-

Hi Karl, its not often that I can't wait for time to pass, but now I am waiting for Jan, 10th with anticipation.  Best wishes to Alyson, you, and the soon to be one young Karlette.  Oh, and Grandma as well!.......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.

Well, I couldn't go for too long without making a double posting, could I?

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.

I'm looking forward to the possibility of good spin off from your interview with ABC.   So pleased to hear that you have made such progress.

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.

Thank you all for your thoughts and encouragement.  Please see my initial blog for my signature, for now.  I tried to edit the signature and it didn't take the info, maybe because I tried to copy and paste it.  So, I'm working on it.  The special should be very informative.  I also hope it is worthy of the hype I've given it...  All should be good.  Was interesting that the producer told us her father and sister have had MS for a long time and both are quadriplegic.  So she has great reason to tell the story. 

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

Test

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

Does Amy Tan have Lyme or MS? I can find no reference to her having MS but only to Lyme.  Here is a quote that touches on her therapy.

"(Her Doctor) recently changed Tan's antibiotic medication to Flagyl (metronidazole) from doxycycline. He says recovery is usually progressive: "Usually when they feel better, they stay better, though there's possibility of relapse. Sometimes it requires months" of treatment for a complete cure, he says. "Sometimes it requires years."

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.

 I was informed it was Lyme but it correlates MS as discussed.  We'll all find out Jan 10 @ 10pm  The producer didn't share any specifics.  Thank you for checking into this Steve. 

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

85% - that's really something. Congratulations.

I don't know if ABC is still open to editing - but it would be great if they could interview the Brorsons. In order to influence the scientific and clinical establishments (the only people who can really spend the millions to one day advance therapy)... data have to be pointed to. The Brorsons published on recovery of borreliae from MS cerebrospinal fluid. This is the most underrecognized scientific work I have ever come across, and by faaaaar the most important and concrete connection that currently exists between MS and borreliae:

Brorson O, Brorson SH, Henriksen TH, Skogen PR, Schoyen R. Related Articles, Links 
 Association between multiple sclerosis and cystic structures in cerebrospinal fluid.
Infection. 2001 Dec;29(6):315-9.
PMID: 11787831

I was so exceited to hear this news just this morning Karl. My mom is one who had a diagnosis of MS and was diagnosed with Lyme in January. Her first test through Igenex came back seriously negative. No antibodies to anything.

Doc put her on ABX anyways and retested her about 2 months later. This time her test not only came back positive, but CDC positive, and that is tough to do.

I just saw her a few weeks ago, first time since she started treatment. She looks really good. Good color, she feels really good. Swelling in all of her joints has disappeared and she is getting sensation back in her feet. She is really impressed and so am I.

I told her this morning about the special and we are really looking forward to it with anticipation. I have heard that CPN is also discussed, so hopefully that will hold true. Really want my brother to see it, because he really has a hard time believing that any of us are as sick as we say.

Thanks so much for being willing to go out there and tell your story.

Karl,

I am absolutely thrilled to hear about your progress and the show!!!

Just want to let you know you are becoming something of a celebrity. I (and others) are trying to spead the word so as MANY people as possible watch on Jan 10th. This can be such a catalyst for people to think in different terms. Thanks for allowing others to benefit from your journey.

Best wishes to you and yours.

Lexy

---------------
"Chance favors the prepared mind." --Louis Pasteur

Husband treating MS with CAP

This is really exciting!  I can't wait to view this show.  Hopefully some good things will come from it. 

 Hubby DX 10-05 by LLMD; positive for Borreliosis; took 200-400 mg Doxy for 2 mons; followed by zith daily for 6 wks; small does of flagyl daily for 3 mons; tested by ID for Cpn 6-06;  Tested positive and took Ketek for 6 weeks; Began protocol 8-06

Hubby DX 10-05 by LLMD; positive for Borreliosis; took 200-400 mg Doxy for 2 mons; followed by zith daily for 6 wks; small does of flagyl daily for 3 mons; tested by ID for Cpn 6-06;  Tested positive and took Ketek for 6 weeks; Began Cap protocol

 My gosh.  I am so further encouraged by everyone's comments.  I think I've gotten at least 300 people aware of this through family contacts.  I hope it goes even further.  Even if it gives someone the idea of what they can do and not have to accept...it will be huge.  More and more I hear so many people are fighting this..  it truly is epidemic.  I'm just so lucky to have gotten better so quickly and able to work with others.  I thank all of you for your support and knowledge.  ABC will be doing some more filming here and I will get them on this site to discuss further.  All the Best, Karl

Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.  

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

 I also want to comment that we felt it important to let ABC use my name and information because it creates more credibility to the story of a real person willing to stand up to it.  We feel this is so important that any shadow of doubt turns people off.  I really hope the spot is worth the hype we have been giving it.  But again, if it helps just one person (I'm sure it will help more) then I see further success and reasoning to the fight of providing validation to the medical communities looking the other way.  All 16 doctors I've seen -I've just called and notified them to watch.  Again, thank all of you for your kind words.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

Hi Karl,

Do you know where I can find schedule info for West Coast viewers?

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

 Raven,  try www.ABCNews.com  They most likely will have some type of preview information a bit closer to air time. 

NOTE:  We were informed today that the special will not air Jan 10 but will probably be near the end of January.  I will keep everyone informed the moment we know. 

The extra filming was fantastic!  Really looking forward to everyone's thoughts after seeing it.  The producer did say the spot will be like 60 minutes as opposed to the original 1/2 hour.  They are interviewing leaders of the Infectious Disease Society, etc..  This is turning into an awesome start in working on getting legislation attacked and changed in my opinion.  I'll be in touch.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

Thanks for the update, Karl.

The extra time does sound like a good thing, although I admit the infectious disease docs make me very nervous even though I knew there presence was inevitable.Image removed.

Lexy

---------------
"Chance favors the prepared mind." --Louis Pasteur

Husband treating MS with CAP

I do agree,  Lexy, but at the same time in order to get things rolling on change, they need to be informed this is growing, an issue to look into, polked and examined (like many of us are), an issue to be addressed, etc..  But, it also has to be done in a cordial way or else they will look beyond it/us and continue their ignorance.  I believe the focus of interviewing them really is to prod them and get started. I'm keeping optimistic vision for it's success.  

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

Karl, of course, you are correct.

A reasonable man approach is always best, helps credibility and such. I will, however, be ready with rotten tomatoes to throw at the screen when the ID doc comes on---just in case.Image removed.

Once again, thanks for putting yourself out there.....not always easy to do, very admirable!

Take care,

Lexy

---------------
"Chance favors the prepared mind." --Louis Pasteur

Husband treating MS with CAP

Karl, it seems the one person who should be interviewed for this is Dr. Stratton. Any mention of him and his work on this program?

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

 Raven,

We did provide all the information from Wheldon/Stratton articles to the producers and explained the website and it's importance to them.  I did go over the vitamin supplements I take and their importance, etc..  We also did discuss CPN fairly at length as much as we could.  So I hope there is inclusion, but cannot guarantee.  We heard from the producers that 60 minutes is also looking into a similar spot.....no confirmations on that, but.....I can somewhat see this possibly beginning to open up wide.  We're just starting.  Throughout this nightmare of doctors/insurance/etc., and actual treatment, I always was angry and just wanted to do right or make it right for others so they possibly wouldn't have to face the same nightmare. 

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

 ABC special may perhaps run in February.  They feel this is such an important story, they want to do it right.  I will post when the air date is more firm.  Thank you for all the encouragement and support!

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

Karl, thank you from all on this site.  It has been from Jim's far-thinking fledgling idea to the possible national awareness, maybe even world-wide.  

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

Karl, just one question on your regime - why would you change anything? Safety and efficacy are all we want from medicine (along with maybe a little tolerablility). I'm not informed about the natural history of MS, but I assume your recovery more likely than not corresponds to some serious efficacy. As for safety - are your doctors perhaps fearful that all those antimicrobials, if continued, might eventually become more toxic to you then they have been so far? That'd be something I know almost nothing about, and unfortunately I think sometimes no explicit empirical safety knowledge exists for a given combo of drugs.

To clarify my bias - this is a perspective from someone who's been lugging around the last ~5% of a severe CFS case for well over a year. All told, I took several months off of abx over the last ~15 months, and kind of wish I hadn't. I assumed I was likely to keep improving even with less intensive therapy, if very slowly, but I didn't. 95% recovery is an unutterable blessing, but the residue of the disease is still screwing up my life (limiting school performance, for example). So I started adding in some quinolones (not part of any of the Stratton or Wheldon regimes) over the last 4 months, but no avail so far (it's worth noting that quinolones are very weak against borreliae, and rifampin inactive on borreliae).

 Eric,  Perhaps I'm just lucky to be able to withstand so much.  (Norwegian guts)  My Lyme Doc calls me a cowboy and an alien since I'm so apt to attack this hard and he's always amazed at my functionality.  Ultimately, this is just the focus we have used to treat this.  Of course it's best to be as safe as possible.  Liver and white count is monitored closely 1x/week in beginning and now every other week.  It has been scary at times but the liver and white count have always balanced.  Overall, I think there are many unknowns and as my MRI's show 23+ lesions my doctor has felt it best to hit it hard and quickly to eliminate any further progression of the MS.  My last 2 MRI's show all lesions have stopped in their tracks - no enhancement or new lesions. 

My doctors felt when I finished the IV Rocephin that I should stop all antis and see how I do.  Sarah, kindly, reminded me that I shouldn't do that and so I've decided to continue the attack for another 6 months minimum to give me a years worth of treatment and then I will probably continue another year based on any reactions found.  Stratton states if you have no reactions while on Metronidazole, Tinidazole, Rifampin used together with Azithromycin and Doxycycline, then you are essentially cured. This is how I intend to test the cure-ability in the end.  Because who knows otherwise.  The Factive (quinolone) I'm on with Doxy and Rifampin currently.  I took for about 2 weeks and felt nothing and felt I'll get off it and change back to pulse Tindamax, but in the 3rd week, I've been herxing big and minor- fairly constantly.  So I intend to ride it out and will still perhaps add the Tini pulses on top.  That would be a first pulse for me.  I'm just anxious to ruin this from my body and be done.  A lifetime of boosters doesn't faze me, either anymore.  I'd rather do that than not live normally.

I'm not a doctor by any means, but as I've learned....do not stop the antis.  Get back on and hit it hard under strict monitoring and I would think within 1 more year you should be able to clear the ~5%.  Let's hear what others have to say about it.  It is only my humble, opinion.

Eric,  I hope this  answered some of your concern(s).  Let me know otherwise. Overall, I'm one heck of a lucky guy, on many levels, with a long road ahead even being 85-90% better.  I'm off to see the 17th doc for my nystagmus later this month and will also be seeing a nutritionist/physical therapist to regain my health.  Lots of atrophy and I lost 20-25 pounds.  Just have to look past it all and know you will be on top.  Life will balance.

Best regards, Karl

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.  I have used Minocycline, Betaseron then quit, Azithromycin, Mepron,Rocephin IV,Tindamax, Diflucan, Rifampin, Doxycycline and Factive(quinolone).  I'm currently on the last 3.  I am 85-90% better in just 9 months.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

Eric, one other thought is we change the treatment for me as we have so that the bacteria doesn't have time to become used to hiding from the antibiotics or immune to them.  Also, so your body doesn't become used to one antibiotic and form an immunity to them either.  I want to be able to use any and all down the road should I ever need them and want them to be just as effective.  We've learned to change them up and hit it hard and strong throughout, ....til really better.  Alas, the hard part will be knowing when you are really better. Again, I intend to use Stratton's idea to help determine this somewhere down the road. 

 I do hope I've answered your questions.  Please let me know otherwise.  All the Best, Karl 

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/1/06.  I have used Minocycline, Betaseron-then quit it, Azithromycin, Mepron, Rocephin IV, Tindamax, Diflucan, Rifampin, Doxycycline and Factive (quinolone).  I'm currently on the last 3.  I am 85-90% better in just 9 months.

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06

Karl,  I'm very excited for your improvement and the ABC story.  I've been spreading the word too, and Wiggy has been updating the ABC plans on another website.  Just today, though, I read a post on that site that mentions a risk of gallstones and heart infections in association with long term IV Rocephin ( here ).  Perhaps you already know of this and have weighed the risks against the benefits.  That is my only source on this; if you have more, please let us know.  Thanks,

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Cpn indicated by reactions; Mpn, EBV, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDN.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity.