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New but have been around the block
Posted: Tue Feb 20, 2007 11:06 am
by Karl
Hello all. I live in CT, USA, and was diagnosed 5/4/06 with MS. My MS has not been labelled as I only had one episode just prior to diagnosis that made me bed ridden. I haven't had any further exacerbations/episodes. My doctors and I have treated this with high dose antibiotics and vitamin supplements for 10 months now. I did use Betaseron for 1.5 months and then quit as no advantage was found - only bad side effects. As of today, 2/20, I am 95% better and gaining. I tested positive for CPN (Respiratory Infection), Lyme Disease and Babesiosis (also tick born/malaria like). My last 2 MRI's have shown all lesions to have stopped in their tracks and no new lesions have shown.
I will post my story soon in hopes it may shed some light for anyone out there. I've seen 17 doctors to get to this point and was not going to accept MS in my life.
ABC News Primetime interviewed me for my story in fighting MS and will air in the next couple months. The host is Jay Schadler. The special is titled: "Chronic Lyme as it Pertains to ALS and MS" Many specialist were interviewed and 2 other patients I'm aware of. One of those is Amy Tan (Author Joy Luck Club) Should be very interesting and hopefully enlightening to anyone out there looking for answers. And, hopefully it will push the medical communities, legislatively, to treat patients properly and to eliminate the nightmares many of us face or faced.
Wish you all the best and hope to learn from each of you.
Kind Regards,
Karl
Posted: Tue Feb 20, 2007 11:34 am
by Melody
Hello and thanks will hope to catch the show. What vitamins do you take as John also takes vitamins and has improved totally to where he feels he doesn't have MS any longer. I cross my fingers
Some of what he takes are in my signature other's are not.
Vitamins
Posted: Tue Feb 20, 2007 11:45 am
by Karl
Melody, I have taken the CAP protocol supplements from the beginning of my MS diagnosis 5/4/06. Go to
CPn Help and look up the list. I followed it fairly closely but as everyone is different, I have made slight changes here and there with doses. I can list all the vitamins but off the top of my head there are around 25. There are key ones help nerve regeneration and protect the liver and are antioxidants to those that help clear the toxins out of your body/liver.
I feel if I wasn't on the CAP protocol supplements during my treatment, I wouldn't be anywhere near being 95% better.
I'll pm you with the last list I received and we can talk further if you would like. Kind Regards, Karl
Posted: Tue Feb 20, 2007 12:31 pm
by Melody
Thanks sent my email
Posted: Wed Feb 21, 2007 7:53 am
by REDHAIRANDTEMPER
welcome..will be watching for that show...let me know if ya get a defent date....
chris
My Ohio friend thinks MS cause is Lyme Disease
Posted: Fri Feb 23, 2007 12:45 pm
by lyndacarol
Karl--my friend in Ohio has an MS diagnosis, but thinks the culprit is Lyme Disease. She was very interested in your ABC Primetime program info when I passed it along to her. She says there is a new, quicker, more accurate test for it and sent me the following on it:
PRESS RELEASE
February 19, 2007
USING 21st CENTURY TECHNOLOGY
FLOW CYTOMETRY
CAPTURES THE LYME DISEASE ANTIGEN
BORRELIA BURGDORFERI
IN A ONE OF A KIND TEST
Contact Person: Tom Long, Administrator
Central Florida Research, Inc.
245 N Seminole Avenue
Lake Alfred, Florida 33850
Phone: (863) 956-3538
FAX: (863) 956-0839
www.centralfloridaresearch.com
* Borrelia burgdorferi Direct Fluorescent Antibody by Flow Cytometer *
The Central Florida Research laboratory is located in Lake Alfred, Florida and is replacing the laboratory operations of the Bowen Research and Training Institute, Inc. Central Florida Research, Inc. is a state licensed CLIA approved laboratory and is dedicated to the research of Lyme disease and other (CSID) Chronic, Systemic, Infectious Diseases. The Bowen Technique is still a viable part of Bowen Research & Training Institute, Inc.
Antigen tests detect the organism itself and, unlike antibody tests, antigen tests aren't dependent upon a ¡®sick¡¯ immune system to produce antibodies. The Central Florida Research laboratory in Lake Alfred, Florida is doing antigen testing. CFR's antigen test is a one of a kind. It is a direct fluorescent antibody test using a special kind of technique called Flow Cytometry. This Flow Cytometer is a specific instrument designed to identify bacteria 50,000 events are counted in one minute and the number of bacteria reacting with the Borrelia burgdorferi fluorescent antibody are enumerated in a diluted blood specimen and reported as a percent.
The Flow Cytometer enumerates fluorescing events. The results are expressed as ¡Ü0.02% negative - 0.03% borderline -¡Ý0.04 positive. The Borrelia burgdorferi Direct Fluorescent Antibody by Flow Cytometer test is the most definitive test of its kind available today. Since Borrelia burgdorferi is a spirochete, an antigen test is more accurate in detecting its presence in the blood than a test detecting antibodies.. The Flow Cytometry test from Central Florida Research is most beneficial in detecting Borrelia burgdorferi the causative agent for Lyme disease.
Understanding the microbiology behind the spirochete and cyst form of Borrelia burgdorferi and its ability to hide from our immune system, helps us understand the Lyme Disease controversies and the complications for testing for the bacteria. If the antibodies a person's body normally produces against an invading pathogen aren't always present, then we must have a test that detects the antigen. However, the antibody test(s) are accurate. If an antibody is developed, the test will detect it. Patients with Lyme disease do not always develop antibodies. The antibodies may disappear over a period of time. Testing for the spirochetes in blood presents a problem because spirochetes may be present in such minute numbers that it is difficult to get a sample with the spirochete present. The antigen test detects the spirochete as a spirochete or cyst. If the test is negative by Flow Cytometry, it does not mean that the patient does not have Lyme disease. The spirochete may not be
present in the sample of blood collected or the number may be too small and the amount tested did not detect the microorganism. Symptoms are still the physician¡¯s greatest diagnostic tool, when used in conjunction with clinical testing.
Since Borrelia burgdorferi Direct Fluorescent Antibody by Flow Cytometry is an antigen test, the result is more accurate in detecting its presence in the blood than a test for antibodies.
---------------------------------
My own belief is that excess insulin is the root of this MS evil; I encourage anyone with active MS symptoms to request a fasting serum insulin test from his physician--more on that test in the appropriate thread.
Flow Cytometry
Posted: Mon Feb 26, 2007 11:57 am
by Karl
Lyndacarol,
Thanks for the info on the new test. I'm looking into it to follow up on in about 6 months. That is when I estimate myself to be 100% better. Currently about 97%. Many fine lines of distinction.
I'll be in touch with everyone as soon as I know the air date. Wish you and your friend all the best. Happy to talk anytime. Regards, Karl
Posted: Mon Feb 26, 2007 1:19 pm
by FUMS_21
Hi Guys i read up on what you guys were talkinhg about and i have always believed it to be true.
Im a 22 year old male diagnosed last june and i want to go on supplements only.
But im still confused on which ones i should be trying..
Can anyone send me a list of what they are taking please????...
Currently i take Omega 3 oil
and Acetyl-l-Carintine (just started after reading up on it)
thanksss
pleasee i want to feel better
Supplements
Posted: Mon Feb 26, 2007 1:57 pm
by Karl
Fums,
Look above at the postings. I replied to Melody on Feb 21 where to find the list of supplements I took/take and would recommend .
CPn Help. (all lower case letters) If you pm me your email address, I can also send you a list too. You can also read my story at the above site. Click Patient Stories at the top of that home page and go to Karl's Treatment for MS with the CAP.
But, if you have Lyme....or CPN or other co-infections you need to eradicate it with antibiotics, not just supplements. You should find a good LLMD (Lyme Doc) in your area that is also open minded about the MS connection to Lyme and other co-infections.
I'm not a doc, but this is the treatment I went through and am 97% better today within 10 months. I'm lucky it's been this quick. Keep in mind it is different for everyone and could take longer, etc.. Even though, I'm at this stage, I probably am looking at a lifetime battle with antibiotics as my case was so severe. I was diagnosed with MS with 23+ lesions on brain and spinal cord. Prior to this, I only had minor symptoms of great fatigue and beginning numbness in my feet. Within one week of the numbness starting, I was bed ridden.
Sounds like you are off to a good start and on the right track. Stay strong and in charge of your treatment. Best Regards, Karl
Posted: Mon Feb 26, 2007 7:39 pm
by FUMS_21
Hey Karl.
Not sure if you got my PM, this is going to sound a lil weird, but i believe in faith and well this is were im going with this...
About a month ago my mom was watching television and was watching a show on satellite in which doctors in Europe were talking about how some people when they were young had either a flea/tick (not sure of proper terminology) and got sick from them, but then it cleared and they led normal lives, however these doctors believe that some of these individuals developed Ms. Now my mom told me when i was 2 i had this and i got a really bad fever and sick , but recovered fine. Now after reading about what you discussed about Lymes disease its kind of connecting to my experiences. I know its a stretch , but now i want to make sure that this isn't what I have. Also i read your story on the profiles and the symptoms you experienced are similar to mine. Also you mentioned your 1st day of feeling better was Septmeber 18th, well again sounds weird, but thats my birthday.
I know this sounds dumb, but can you tell me more about Lymes and how i could make sure this is not my problem.
Thanks
T
Wow
Posted: Tue Feb 27, 2007 8:01 am
by Karl
T, Wow. Having faith and drive is what brings you through this. Your thoughts are not dumb. Thoughts of such put you outside the box and that pulls and pushes you to where you want/need to be. Healthy.
I did receive your pm and will email you soon. As I am not a doc, I can only give you my opinions based on experience and I know there is so much more about all this I don't know. That is why these sites are so important and the many kind people sharing their stories/etc...is the best drive there is.
Without really knowing details of your situation, the best thing I can tell you is find a Lyme Doc in your area that is open minded to the MS connection and other co-infections. Also a neurologist that is Lyme and CPN literate. They can do the tests for you that a Lyme doc might not test for. The docs may tell you everyone has CPN - no need to test for it, but push them to do it.
Or, as Lyndacarol posted, call Central Florida Research and get a test kit and have your GP draw the blood and send it in for testing with the flow cytometry. It sounds very accurate and I know someone undergoing this test and will find out soon how it went and the results. I will share them with you, but the test sounds very accurate as opposed to the standard tests which usually come back negative or indeterminate like mine. To my Lyme doc, i simply have Lyme and we are treating it. There are stories of those with negative Lyme tests. They take antibiotics for something else coincidentally. And are retested for Lyme and it shows positive results. That right there shows validation and how false the current testing is.
It is our understanding through our research that MS is simply caused by infection. I was clearly diagnosed with MS by a Harvard Neuro. To him it was nothing else. But as you read in my story about the antibiotic vaidations....what else would it be? My last 2 MRI's have shown all lesions to have stopped in their tracks. My next MRI is in March and we'll see where I'm at. But....lesions can still be present and may take 1+ years to heal to the point of not seeing them in an MRI...so time will tell....But....I am literally 97% better-only dealing with minor hand numbness which comes and goes, light fatigue (but that mostly is due to atrophy of being bed ridden) and an imbalance with my vision that I notice is slowly righting itself. I would call that success in the light of my MS was caused by CPN, Lyme and Babesiosis. But who knows....there could be other infections unknown. The human race has been around for how long? Something causes everything respectively. It's not just your body deciding to attack itself - in my opinion. Once you treat the infection your immune system will rebalance.
It's not a misdiagnosis. I do have MS. BUT....it is mistreated in the normal or general realm of the medical industry which makes so many people live the way it shouldn't be lived. A neuro will tell you you have MS, take these med and learn to live with it. NO WAY. ERADICATE IT and never live with it again....This is my hope and intention. I base it off of the success shown me so far in my treatment.
Again, I do not have all the answers or info but wish to help in anyway I am able. I'm sure the ABC News Primetime special will be helpful with info, etc.. I will let everyone know when it will air. Talk soon and with as many people as you can. They all have key information, suggestions, recommendations and respected research.
Best regards, Karl
Posted: Tue Feb 27, 2007 12:26 pm
by FUMS_21
Hey Karl.
Thank you so much for your help and emails. I have emailed you back and hope to hear from you soon.
I have a question regarding central florida research link, not sure of its taking me to the right site.
lyndacarol, do you know if there is another way of contacting them by email?
Can you guys help me out if you know the exact site or email?
thanks, want to get tested for this
T
Link
Posted: Tue Feb 27, 2007 1:13 pm
by Karl
Fums,
Nice talking with you. The only site I know of is what Lyndacarol posted.
www.centralfloridaresearch.com or just simply call them with the numbers provided above.
I have yet to check them out, but again, I just told my dentist about that and he already has a test kit coming to him and an appointment to have the blood drawn to send the kit back.
When he tells me how it goes and the results, I'll post and let everyone know. It sounds good to me and I probably will do it in about 6 months after 1 years treatment and see what the results are...
Best regards, Karl
I have no further info on Lyme testing
Posted: Tue Feb 27, 2007 5:50 pm
by lyndacarol
FUMS, I have only the info on Lyme testing which my friend in Ohio sent me. Sorry that I have nothing more to offer.
Posted: Sat Mar 03, 2007 2:47 pm
by Arron
Karl, thank you for sharing your fascinating story. A belated, but warm, welcome!