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Cumulative MRI Report over 2 years spanSubmitted by Karl on Fri, 2008-02-15 10:59. Hello all,
This complete report was always asked for as it appears information gets lost when say the last MRI is only compared to the one prior. We now were able to get this report to eliminate any cumulative error over the past 2 years as my Neurologist now believes.
Here are the results of the comparison of the very first MRI 5/4/06 to the latest 1/11/08- direct from the radiologist and Neurologist.
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"The initial brain MRI dated 5/4/2006 had shown multiple abnormal hyperintense brain lesions involving brainstem as well as cerebrum with multiple enhancing lesions. Nonenhancing lesion at C2 cord level had also been seen on 5/4/2006 exam. Less enhancement was noted on report of brain MRI dated 6/22/2006 and there was question of a subtle cord lesion on report of thoracic MRI dated 6/22/2006.
Improvement was noted on the brain MRI dated 10/27/2007 and 1/11/2008, read by different radiologists it was felt that there was no abnormality of the thoracic spine. Subtle signal abnormality in medulla and upper cervical cord was stable without enhancement. The brain lesions had shown minimal change in these exams, some of which could be attributed to minimal changes in technique. There was relative stability with no abnormal enhancement.
"On February 8, 2008 the exam films which were not available in January are reviewed.
5/4/2006 chest x-ray is unremarkable. A direct comparison of the earliest examinations in 2006 with subsequent examinations including latest dated 1/11/2008 does confirm what was noted on reports previously examined prior to film arrival.
Abnormal hyperintense signal FLAIR sequences in medulla and upper cervical spine are less conspicuous and nonenhancing on 2008 exam. There had been tiny upper brainstem lesions in 2006. There had also been larger hyperintense lesions on FLAIR sequence in 2006 including adjacent to posterior horn of right lateral ventricle which had measured in the 1.5 centimeter range with also lesion over 2 centimeters in the left superior parietal brain as well as the anterior inferior right temporal white matter. There had been extensive enhancement in 2006 exam both of larger and some smaller areas of hyperintense abnormality on FLAIR sequences.
In reviewing the patient's previous exams there was extensive abnormality in brain with also involvement of brainstem and upper cervical cord on 5/4/2006 and there were several enhancing lesions. On the follow up examinations with most recent dated 1/11/2008 the brain lesions are either smaller or not definitely identified and there is no abnormal enhancement. Likewise, cervical abnormalities are less well defined and do not show enhancement. No thoracic lesion has definitively been documented."
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To me it all sounds quite Past-Tense (smile) with constant improvement from the start. I still want a total count of lesions or close to final if they can for my own knowledge. I did ask for that previously. Any other questions, please let me know. My Lyme doctor said this...."That is all you and I needed to hear.
I'm so beside-myself happy, that I am crying over the biggest grin you have ever seen on a human being. To me.....this is....pure justification on top of pure justification for this treatment. Period.
On another note: I have been off everything for 4 days and doing amazingly well. There were evening periods when I felt worsening (but was my body just cleaning out?)To cover this initially, I took one Roxyi and 2 Doxyi and Advil and felt better in a few hours. I then thought I'd have to go back on full time. My doctor said don't until we meet. So I've toughed it out and am pleasantly surprised. As the days passed I had taken only a few Tetracycline to tie me over til I meet with my doctor but I've pushed through without having to take any more than 3 over 2 days. Over the 4 days, the worsening lessened each day and today, I've only woken with a headache. I don't get much sleep as our daughter is under the weather with a bad cold (which I don't seem to catch her colds anymore when they come on. I always did, immediately) (immunei system rebalancing) but regardless I can spend an entire day getting life taken care of and getting back to humanity. I am able to walk thru a day with only minor symptoms. It still isn't easy at times but is for a majority of the time/day. I still deal with my vision being off but it is so much better than from before and sometimes isn't noticeable. Numbness is basically gone, now being off, but does get fuzzy at times but only lightly. I still am off balance sometimes but it is controlled easily. The lesion pain still is around but not as drastic and the headaches are covered with Advil but overall seem lessened.
Now: I meet with my doctor on Monday. We will determine my next regiment and I feel it will, or could, be only pulsing from here on out and not the steady, high, high dose regiment I've been on from the beginning. To also let my body clean/rebalance, I've cut back on the supplementsi,too, except for the key ones. (ie: B12, NACi, Milk Thistle, D, Calcuim, Omega 3 and E. I change it up different days. The Alpha Lipoic and Acetyl Carnitine seemed to be adding to my lesion pain/headaches so I'm staying off for a time to see any differences and so far it does seem to help. I know those two are key elements and always helped before but I needed a break from it too and will readdress it soon as I go into a new regiment.
To follow up: I have a long road ahead but as an even more normal human being and will be on the abxi and supplementsi for a good long time to be sure I complete this to the end and totally symptom free - is how I look at it.
TO MY WIFE:
I LOVE YOU, ALYSON, AND PLEASE KNOW I WILL WALK THROUGH ANY HELL FOR YOU....IN ANY LIFETIME FOR RESTORING ME TO LIFE. wow......
Time to feed my daughter and she wants to do the dishes. How about that??
All the best,
Karl
___________________________________________________________ Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi 5/4/06. CPNii past and new chronic infectionsii. Lyme suspicious titers and Babesiosis found. Started CAPii 6/1/06. »
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Congrats Karl, that is a
Congrats Karl, that is a great endorsement of the treatment! I am planning to have a 2nd MRI in April to compare to my first in Aug 06.
Malcolm
Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
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Malcolm
Wheldon Protocol since July 07. Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MSi Aug 06.
Karl, Victory is sweet!
Karl, Victory is sweet! Thank you for sharing this and other reports of your journey. How is Alyson doing?
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
That is
That is great...congratulations...
Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f/sun,
estriol, progesterone, synthroid, and pulsing w/flagyli.___________________________________________________________
Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 2400mg, doxyi 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli pulses
Excellent news and very
Excellent news and very inspiring for those of us who are still just starting. Thank you for sharing this with us.
CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Fourth pulse metronidazolei completed 1/23/2008.
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CAPi for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi (3 x week). Sixteenth pulse metronidazolei + INHi completed 12/20/2008.
In over 300 lie blood cell
In over 300 lie blood cell exams I have yet to find a Bb infected person without a co-infection of Mycoplasma or Cpni or EBVi or all three. Fortunately the Abxi treatment works for all these problems. The only problem is that oe often do you get re-infected? Most people think that Bb is only spread by ticks when in realityit is contacted through mosquito bites, ticks, other blood sucking criters, bodily fluids, has been cultured from dairy (cows get infected by ticks too) Stron pssibility that it can be passed by blood transfusions but they are afraid to look! Flagyli will get the cysts of Bb where the antibiotics fail. Read CELL WALL DEFICIENT FORMS Stealth Pathogens by Lida H. Mattman. ISBN0-8493-8767-1 Well worth the time and effort.
IGeneX is the best lab to use for Lyme evaluation and co-infectionsi in my opinion.
I am so happy to see that
I am so happy to see that everyone is doing so well with this (well except for the downs) and that you all are showing improvment... Its great to know that these doctors have stumbled on a way to help people .....My daughter and I are ever so greatful we have found this site... CONGRATS Karl !!!!!!!!!!!!!!!!!!!!!!!
Kim A
Great news, Karl!! Your cup
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Feeling 98% well and going for 100! Still testing + for Cpni since June '08.CAPi since 8-05 for Cpn and Mycoplasma P. for MSi and/or CFSi. Also EBVi and HHV6 NACi, Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi and Methylation supplementsi
Okay, Karl, have I asked
Okay, Karl, have I asked you for a patient story yet? Well with this post you are just going to have to put one together: with this report as the lead off. Few get such a clear sequential set of data to report over such a time period. There are some are out there (Sarah's for example), but this one makes you one of the poster kids--- although from Willow's last post she may be giving everyone a run for their money in CAPi amazement.
CAP for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Karl, this is great news for
Karl, this is great news for all of us; not only great news but concrete evidence to back it up. Not many (as Jim says) have the opportunity to get more than one MRI, so this is indeed a treasure trove of information and evidence. Congratulations...
Kim A. we are indeed lucky to be party to the work done by our wonderful doctors Stratton, Sririam, and Wheldon (plus all the others for whom we have no name). It is true that some stumbled upon this treatment, most of them being patients, but I think that it was great research, curiosity and persistance that resulted in the pioneers of the CAPi being able to help people...
Michèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Jim, you've already got
Jim, you've already got Karl in Patient Stories: he just needs an update, which I am sure he will willingly do, two year old daughter allowing!
Karl, all this is wonderful. You and the redoubtable Alyson must be so, so, happy..........Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Karl, I just sat down to
___________________________________________________________
On Wheldon protocol for MSi since April, 2006. doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma
Thank you, thank you, thank
Thank you, thank you, thank you, Karl! Am so, so happy for you, too!
I wish my Lyme GP had said the same, when my MRIs showed no enhancement. Yes, that is all that you both needed to hear. I hope you will be successful in obtaining the lesion count. Not easy, since my neurologist was afraid of the results and wouldn't even acknowledge them, or look at them with me. You are so lucky!
Can certainly empathise about cutting out some of the supplementsi. I've been forced to do the same, and feel so much better. While they are recommended, they are not mandatory. My Lyme GP believes that taking too much of anything is too much for the liver to keep up with. Maybe this is why you feel better, because of it, too.
Please let us know what your new regime is, that your doctor prescribes. Whatever it will be, I do hope that it prevents the re-infection that DrStan (see above) has noted in his patients.
Thanks, again, for your update! Many can read and learn from you experience and example. And, hopefully emulate your strength and your courage. Thanks to Alyson, too! And, I hope that your little girl is fully recovering.
--Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USAKarl - Genius Post! I am
Karl - Genius Post! I am so happy for you and Allyson and your daughter!
Daisy-Caregiver- Balo's Concentric Sclerosis. CAPi 5/07. Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,
Novantrone,Doxyi,Azith___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Karl, thank you for this
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 49 pulses NC USA
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA
Thanks for the note Dr.
Thanks for the note Dr. Stan; there is lots we don't know, that is for sure. I was aware the mosquitos did spread Bb as well, I mean, really...why not if ticks can!
I am thankful I am not a huge dairy consumer!
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 daysWow Karl, this is
Wow Karl, this is great..thanks for sharing!
will you still take the NACi at the minimum for maintenance?
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 6th pulse 1 X 375 mg 5day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 daysWhatever Karl decides to
Whatever Karl decides to take or not take, he must carry on with NACi since that will prevent a new CPni infection taking hold. By the way, I still take everything, just less of it, somedays I take nothing except NAC, I take every day..........Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Karl- I'll make it easy on
Karl- I'll make it easy on you. May I just copy this post onto your Patient Story as an update?
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3
___________________________________________________________
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Thank you and update: Hello
Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi 5/4/06. CPNi past and new chronic infectionsi. Lyme suspicious titers and Babesiosis found. Started CAPi 6/1/06.
___________________________________________________________
Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi 5/4/06. CPNi past and new chronic infectionsi. Lyme suspicious titers and Babesiosis found. Started CAPi 6/1/06.
Regiment Update:from Karl
Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS 5/4/06. CPNi past and new chronic infectionsi. Lyme suspicious titers and Babesiosis found. Started CAPi 6/1/06.
___________________________________________________________
Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MSi 5/4/06. CPNi past and new chronic infectionsi. Lyme suspicious titers and Babesiosis found. Started CAPi 6/1/06.
Karl - I am so happy for
Karl -
I am so happy for you, for Alyson and for Evelyn Ann ! ! !
You may not be a poster kid but you are surely a courageous trailblazer. You definitely cut the trail that led this horse to water!
Just curious - did your neuroi offer any reason as to why it takes about 4 years to heal?
Thanks again for so generously sharing your incredible experience, journey and success. I always take careful note when you post!
Daisy-Caregiver- Balo's Concentric Sclerosis. CAPi 5/07. Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,
Novantrone,Doxyi,Azith___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Karl - It seems you have
Karl -
It seems you have such a good plan and I am so happy for you and your good health and success!
Definitely agree with you that you have to rotate on the supplementsi and take brief holidays from them at times. I have found this to be true through my own 15 year journey of treating RAi with supplementsi.
There is a concept in medicine called homeostasis. Homeostasis just means constant steady state. You have this for every system in your body - water, salt, kidneys, liver, even body temperature, etc... down to even the macro level of Tcells reaching homeostasis.
During the two weeks you are off antibioticsi - your body is frantically working to reach a new level of homeostasis without the immunomodulatory antibiotics. Your body literally is ramping up on this and down on that to reach a new steady state equilibrium. The same holds true when you use supplements.
Supplements to me are just that - supplements. Supplement nutrients/proteins, etc... in which your body is suboptimal. By taking holidays from supplements - you allow those same body systems to normalize - reach homeostasis. For me taking supplements for 15 plus years, I usually take a couple of weeks off of nearly everything - every 3 or 4 months.
You also wrote "Further explanation of say the numbness going away is this. The bacteria can be in small amounts in different areas and it knows this. In that situation, it calms and hides so the immuneii system cannot eliminate it. As it hides the symptoms, of course, will abate. "
I was thinking, if in your case you have some residual bacteria in your hands - wonder if you could have some antibiotic cream compounded that would deliver drug right to the source of your hand infection.
Roxyi or Biaxin could easily be compounded into a transdermal cream and you couldl rub it on to the backs of your hands to deliver maximum penetration while primarily avoiding kidney/liver processing.
This is done with some antibiotics for acne application and with many other drugs as well. If you decide you want to try this PM me and I will see what I can do to help you as I am fluent in the wonderful world of drug compounding.
Blebbing - know a little - would like to learn more. New topic to research.
All the best! Daisy
Daisy-Caregiver- Balo's Concentric Sclerosis. CAPi 5/07. Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,
Novantrone,Doxyi,Azith___________________________________________________________
Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill