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JerryD
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Posted: Tue Oct 26th, 2004 00:34 |
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Barb,
I have seen no correlation between any IBS symptoms and the start of quercetin...but I was not having any IBS type problems on the day I started quercetin. I am lucky in that my IBS symptoms are too infrequent to allow any 'conclusions' to be made.
Jerry
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Aussie Barb
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Posted: Sun Oct 31st, 2004 03:39 |
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Jerry,
I'm thinking you may have seen but I am just letting you know that there is a new, updated version of *How to Start the MP* with much more information.
You may wish to read the updated instructions, and it is a good idea to print and provide a copy for your MP Dr.
from http://www.sarcinfo.com/phase1.pdf ....
There are other Important new documents as well.
Letting all MPers know to please keep an eye out for all new information posted on the MP site as you keep in touch with us in your Progress Reports regularly, so that we may help you to do MP with the utmost efficacy...
Thank You, best, Barb....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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JerryD
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Posted: Mon Nov 22nd, 2004 23:06 |
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Nearing the end of 4 'boring' weeks on 100 mg mino every 48 hours. Moving the dose from 75 to 100 did not elicit any 'IBS' type herxing...the first time an increase in mino dosing did not produce that result.
I feel I am ready for phase II, as I have not noticed any herx for the past 3 weeks.
Overall energy levels are down a little from pre MP levels...just feel washed out all the time. Very consistent problem, does not vary like the herx symptoms. And still have the CFS problem of non-restorative sleep...it was better when I was just on benicar only, but when I started herxing from the first dose of mino it returned to pre MP level. I think it is just another of the CFS autonomic/neuro problems that will show improvement by the 6 month point of phase II treatment (Dr. M said that for the sarc pop, tinnitus and other neuro problems typically started to resolve at that stage of treatment).
One thing that is contributing to above problems is I am not able to go the the swim pool because of the halogen / bright lighting...not to mention the big electric IR heater's over the deck. I do have the typical CFS exercise intolerance, but one can do 'burst activity' of less than 15 seconds duration which is not aerobic-stressing and avoids the lactic acid induced CFS flare which occurs 48 hours post exercise. Being immursed in water really helps get the lymphatic system flowing, which in turn helps brain fog and resorative sleep problems.
Hoping to get started on Phase II....Jerry
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Aussie Barb
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Posted: Mon Nov 22nd, 2004 23:34 |
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Jerry, Please see >>
IMPORTANT MESSAGE FOR MEMBERS IN OR READY FOR PHASES 2 AND 3
thanks, Barb ...
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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JerryD
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Posted: Mon Nov 29th, 2004 18:26 |
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As I have not yet started phase II, I would like to post one final summary of my experience in phase I up to the current date.
As a general measure of health, I like the Karnofsky scale:
http://www.anapsid.org/cnd/diagnosis/karnofsky.html
My pre-MP score was 70, now it is around 60.
Most of this decline is due to persistent fatigue; the herx symptoms have added a small amount to the decline in overall health (some symptoms have improved, but other new ones have surfaced). This poor performance is also due to a deline in the past few weeks since maintaining a 100mg every 48 hours dosing regime...it seems to have allowed a 'reblooming' of former infection problems that did show initial improvement while on the MP:
2 areas of oral pain and swelling, prostatitus symptoms back at full force, and moderate sinus problems are back to pre-mp levels.
My two area's of cutaneous sarc (suspected, not biopsied) have remained much improved up to this point.
And there have been no lifestyle changes in past few weeks...no change in diet or sun exposure (zero sun exposure, direct or indirect). I was feeling so lousy for Thanksgiving holiday period that we had no visitors nor did any traveling.
I am due to see doc and get phase II prescription filled in about 10 days, looking forward to a more powerful abx combo to start kicking some bug butt...Jerry
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PS - I strongly urge other MP participants to adopt use the K-scale, at least for a summary at the end of each treatment stage. This will allow us to easily start to accumulate some data.
What could be more important than how the MP affects our own health and lives??
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Posted: Tue Nov 30th, 2004 06:52 |
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Jerry,
When I sent you the phase two guideline, you had reported to me on Nov.22, "no mino induced herx for past 4 weeks". Your current message indicates that you are still getting considerable Herxheimer reaction with Benicar and minocycline. Please DO NOT proceed to phase two. You are already kicking some serious "bug butt" with the combination that you are on. Adding another antibiotic may get you into serious trouble.
Please read the phase one and two guidelines again. Our number one priority is your safety. The MP needs to be followed carefully.
Best,
Meg
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JerryD
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Posted: Tue Nov 30th, 2004 23:32 |
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Meg, Meg, Meg,
Like the ole movie, I think what we have here is a 'failure to communicate'...which, of course (exercising one of the few benefits of having CFS) I will blame on my brain fog.
I have NOT had any mino-induced herx for the past 5 weeks, now. As I indicated in my post, "Most of this decline is due to persistent fatigue".
The fatigue is constant...except for the past week, when I have lowered my benicar down to 20mg every 4 hours. That reduced the fatigue by about 20% so far. The fatigue is NOT mino dependent...I have lowered the dose back to 50 mg for a week and it had no effect on the fatigue. I had stopped the mino for a week back in early Oct, to see if it would relieve the fatigue, and it did not.
The other references to symptoms are, as i said;
"a summary of my experience in phase I up to the current date".
In trying to explain why my level of disablilty has become worse over the past 4 months of treatment, I described my herx experiences over the past 4 MONTHS of treatment - I was not talking about the past 4 weeks!!
This is the only sentence that refers to the past 4 weeks:
"This poor performance is also due to a deline in the past few weeks since maintaining a 100mg every 48 hours dosing regime...it seems to have allowed a 'reblooming' of former infection problems that did show initial improvement while on the MP:
2 areas of oral pain and swelling, prostatitus symptoms back at full force, and moderate sinus problems are back to pre-mp levels."
These symptoms have just returned to 'baseline' pre-MP levels, in a slow steady increase over the course of the last 4 weeks...a return to the exact same types and exact same levels of discomfort I had at this date last year... at this date 2 years age... at this date 4 years ago... at this date 8 years ago...
...so, was I really 'herxing' in 1996 to the mino I took yesterday??
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I wanted to see Phase II so my doc and I would have time to study it - to see if we (wife, myself and doc) want me to proceed with the MP. The wife and I are still weighing alternatives - I have not even tried to make an appointment with doc to get the prescription required for phase II (after talking to my wife yesterday, I quickly gave up on my stated goal of starting phase II in the next 10 days). My next appointment with Dr. P (the only doc on your list from El Paso) is still scheduled for 1-27-2005.
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Reenie
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Posted: Thu Dec 2nd, 2004 20:20 |
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Hi Jerry,
Since your fatigue is "not mino dependent," have you considered taking a look at other factors such as your light/sun exposure? I KNOW I can definitely relate my fatigue to light/sun, including fluorescent light exposure.
Here's a really descriptive new paper. You may want to print and take with you to your MP Dr:
http://www.marshallprotocol.com/forum2/1427.html
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JerryD
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Posted: Sat Dec 4th, 2004 01:20 |
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Here comes Reenie leading the 'charge of the light brigade', ggg
I agree with you on the importance of light avoidance.
-->I have been sequestered in this cave for so long I now have moss growing on the east side of my nose!!!
The relief I felt from lowering my dose of benicar down to the 3/day level only lasted for about a day and a half...I am coming to the conclusion that the rise of all the persistent cfs symptoms are because I am having a good ole fashioned 'cfs' flare - which can be caused by any source of stress.
And the classic 'cfs flare' does not involve any physiological worsening of problem areas (like my prostatitus), but rather an increased 'sensitivity' (more appropriately described as 'hyper-vigilance') by the brain as it processes the neurological input from these areas. Dr. M to his credit spotted the importance of this at his last conference...but this effect does add another layer of 'uncertainty' when contemplating a 'herx event'.
But the important lesson to be learned from all my yakking on the post that follows is that the 'autoimmune' diseases are very unique when it comes to 'measuring progress' by how the patient feels.
Jerry
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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JerryD
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Posted: Sat Dec 4th, 2004 07:58 |
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Note from Trevor:
Jerry, I have edited this to avoid potentially defaming or maligning Dr Fallon. Also, I am pretty sure that PET machines, from which SPECT were derived, were only developed during the early 1990s. I personally worked on the design of the computers for the one from Hamamatsu Photonics, one of the pioneers in PET. Could you please recheck the 1987 date on this issue?
Here Dr. M talks about some the research from 2004 "Emerging Infectious Diseases" conference in Kansas City:
http://www.marshallprotocol.com/forum18/1391.html
This is the part that pertains to what I am trying to explain:
"Further, Dr Fallon's group found from SPECT data that the main metabolic changes in the brain were in the region of the Parahippocampal Gyrus. This is responsible for receiving sensory input from the outside world, integrating it, and projecting it onto the Hippocampus (memory) and Amygdala (fear, aggression, mood).The Insula was also affected.
Further, the Para-Lymbic dysfunction noted on SPECT
1. disrupts attention, memory and learning
2. alters emotional response to sensory stimuli
3. distorts links between visceral states and mood, and may lead to increased stress responses
4. depresses the immune response and alters endocrine function
5. alters perception and emotional valence of pain, smell and taste"
<..edited..> My former doc, Dr. Jay Goldstein discovered < this > mentioned in the above quote more than 12 years ago. Dr. G did his research on CFS patients...but one thing the identical results show is that the neurological basis of all TH1 diseases is very similar.
In 1992 Dr. Goldstein made a personal presentation to the NIH which was titled “Chronic Fatigue Syndrome: Limbic Encephalopathy in a Dysregulated Neuroimmune Network”. I remember asking him how it went, and he said “After about 5 minutes I could see their eyes glazing over”.
Dr. G was already using SPECT back in ‘87 when I first went to see him, and he used them in his presentation to the NIH and also in his 1993 book:
Chronic Fatigue Syndromes: The Limbic Hypothesis
Just compare these book reviews from 1993 to the highlights from Kansas City above:
“Dr. Jay Goldstein uses his encyclopedic grasp of biobehavioral and biomedical sciences to arrive at a truly integrative theory of the complex pathophysiology of the chronic fatigue syndromes. Utilizing principles of psychoneuroimmunology . . . he arrives at a mechanism of dysfunction of that portion of the brain concerned with memory, emotions, sleep, stress responses, and regulation of endocrine and immune functions. . . . [This book] CREATIVELY OFFERS A NEW MODEL BY WHICH TO UNDERSTAND THIS BAFFLING CONDITION.”
George Freeman Solomon, MD, Professor of Psychiatry & Biobehavioral Sciences, University of California at Los Angeles (UCLA) and Chief, Psychoneuroimmunology, VA Medical Center, Sepulveda, California
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“Provides very useful material to both the clinical practitioner and researcher interested in the most recent discussion of CFS. . . . Most impressive is the delineation of this book into sections reviewing the limbic system, a dysregulated neuroimmune network causing limbic encephalopathy, the diagnosis of CFS, and the treatment of CFS. . . . Recommended to all clinicians and scientists who have a continuing interest in the treatment and understanding of CFS.”
Annals of Pharmacotherapy
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“Outstanding physician and scientist Goldstein provides the answers for [many] questions in this book. Provides a thoughtful analysis of CFS and concludes by submitting a new hypothesis on the possible link between limbic system, infection and CFS. . . . A disease such as CFS deserves this excellent reference book from such an outstanding scientist.”
Journal of Pharmacy Technology
Dr. Goldstein got his doctorate in Psychiatry, and then got his MD when he discovered that psychiatrists can 'talk the talk', but NOT 'walk the walk' when it came to actually curing patients (my paraphrasing, lol). And being about 10 or 15 years older than Dr. M, he never had an opportunity to learn computers when he was in school...which is a big reason why he wrote his books to document his research and treatments.
Even with over 150 pages of scientific references in his past two books (2500+ total studies referenced!!), Dr. G never mentioned Vit D of any kind, but from everything I have seen this is another area where Dr. M’s disease model of the slow progression of CWD infection makes sense, and fits my own personal experience. And after looking at Dr. M's diagram:
http://autoimmunityresearch.org/hormones.pdf
I am going to try and see if I can get Dr. G to contact Dr M...
In my quick but amatour search for more 1,25 D / brain connections, I found the study linked to below that seems to show not only does 1,25 D act as a hormone in the blood, and cytokine at the site of inflammation, but it is also a neurotransmitter in the brain directly:
Distribution of 1,25-dihydroxyvitamin D3 receptor immunoreactivity in the rat brain and spinal cord
http://tinyurl.com/4azyd
I just did a quick search, I'm sure there is a lot more...though just the hormones affected by 1,25D shown in Dr. M's diagram are enough to establish many connections in regards to "disorders ...with regulation of neurochemical receptors and secondary chemical messengers (those released from bound receptors)" - Dr. G's model.
One point I find interesting is that almost all of the diseases that Dr. M calls ‘TH1” are the same ones Dr. G refers to as ‘neurosomatic’. Of course, Dr. G stayed focused on the ‘neuro’ side...all he would say was that sooner or later a reseacher would discover what ‘bugs’ may be involved, and to what degree.
Dr. G’s treatments would produce ‘global relief’ of most symptoms. But the SPECT imaging also shows evidence that this may have been only ‘pallitive’; as the cerebral hypoperfusion that characterizes CFS would become WORSE when a successful drug was applied. Just another example of what a confounding illness this is!
The moral of this story is that you can not tell how your health is (at least in the short run) by how you feel. If there were a direct relation between feeling good and actually getting better on the inside, these autoimmune diseases would have been cured long ago.
My experiences as a patient of Dr.G. (and watching many other of his patients) are what have led me to believe that starting at about 6 months into MP phase II would be the ‘time’ to expect improvement for most of the CFS patients, as this is the time when Dr. M reported the start of resolution of the ‘neuro’ symptoms (tinnitus for example) that sarc patients reported. Although I am pretty sure overall recovery time is going to be related to length and severity of illness. And I expect the resolution of most symptoms to be global and almost instantaneous, when and if it occurs for us MP CFS folk. That will not mean all the bugs are gone, but it will indicate that the levels are low enough not to trigger this neurosomatic 'domino effect'.
Dr. G’s use of drugs is what I call ‘chemical acupuncture’...he would find the right molecule that would interrupt the 'malfunctioning' neural network in the brain. The effect would be like hitting a switch, bam...one minute you feel sick and the next you feel well - but time has proven (for me, at least) that this is just another ‘prednisone effect’, as the bugs continued to grow.
Unfortunately for me, Dr. G's treatments would not last for more than a few weeks (with one exception, and what a wonderful summer that was!), and then I would be back to square one. But at least I had a window into what 'good health' could be.
One of the most important reasons that made me decide to try the MP was TM's own description of what 'remission' felt like...besides all of the symptoms going away, when he described (I'm paraphrasing now, can't remember his exact words) a feeling of pervasive calmness and relaxation...that told me he has experienced what I had through Dr. G's treatments. Even though those treatments did not last, I have always remembered that very distinctive feeling, and have been looking forward to the day when the actual cause of this illness could be conquered so that wonderful feeling would be permanent.
One other thing I should mention before I quit yapping, is that Dr. G saw more than 20,000 patients before he retired, and I don't know how many brain scans...but all but a very select few showed no physiological damage. The spect scan measures how your brain functions, it is not a measure of physical damage.
One final quote from the review's that relates to the study that attracted Dr. M's attention (for which he should be commended, just knowing the brief summary above puts him ahead of 99% of the CFS doc's out there):
"Dr. Goldstein has advanced his theory into the pathophysiology of neurosomatic disorders to include not only dysfunction of the limbic system itself, but also dysregulation of widely distributed neural networks that regulate the limbic system, including the prefrontal cortex, basal ganglia, thalamus, and heteromodal association areas (within the PFC). Dr. Goldstein believes there are many "sensory gates" that might be dysfunctional."Last edited on Sat Dec 4th, 2004 08:38 by Dr Trevor Marshall
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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JerryD
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Posted: Sat Dec 4th, 2004 17:37 |
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Dr. M,
You are correct about the use of spect starting in early 90's, after checking back I found that the scan that I was given in 1987 was a BEAM scan (I don't have by records here, but from looking at Dr. G's description of the various techniques he used, it's my best guess for now).
Thank you for correcting that mistake...
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And for the record, I found your editing of my post judicious and limited.
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The important 'moral of the story' from this data is that
1. That the findings of lyme patients so closly matching the findings of CFS patients further supports your concept of 'common cause' (and in this case, 'common neural effect') of all the so-called auto-immune diseases...
2. Patients need to realize how the dysregulation of the brain effects what they feel, and how that can 'lead astray' those who think that by feeling good they are really getting healthier...which is usually not true, at least in the short run...
Jerry
For your info, here is a little more specific info about Dr. G's use of SPECT scan's:
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Dr Jay Goldstein, using SPECT technology, examined 33 patients with CFS, 15 of whom also met the criteria for FMS. Scans showed marked reduction in blood flow in the right hemisphere of the brain, especially amongst FMS patients.
8. Goldstein J. Chronic Fatigue Syndrome - the Limbic hypothesis Haworth Medical Press, Binghampton New York, 1993.
http://www.immunesupport.com/library/showarticle.cfm/ID/5153/e/1/T/CFIDS
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...this is an excerpt from "The Diagnosis of Chronic Fatigue Syndrome As A Limbic Encephalopathy", by Dr. Jay A Goldstein:
SPECT Scan Abnormalities
I believe that tests of brain function are quite helpful. The
best one may be the SPECT (Single Photon Emission Computerized
Tomography) scan. In this procedure we administer Xenon133 by
inhalation and do a computerized scan of cerebral blood flow using a
brain-dedicated SPECT scanner. Using other types of SPECT scanners
does not provide adequate resolution. We then ask the patient to
perform cardiopulmonary exercise testing, looking for a lowered
anaerobic threshold, respiratory alkalosis suggesting
hyperventilation, and irregular respiratory rhythms at maximum
exercise suggesting disordered central regulation of respiration.
After physiologic parameters return to baseline, we repeat the
Xenon133 study and may also do one with technetium HMPAO. Pre- and
post-exercise neuroendocrine measurements are performed, and if the
patient is able to return in the next day or two, we omit the
technetium study and do another Xenon133 scan. Although we have not
completed testing all comparison groups, SPECT results are quite
distinctive. There is resting hypoperfusion in the anterior temporal
lobes, more often seen in the right. There is also hypoperfusion in
the prefrontal cortex. The hypoperfusion is usually worsened by
exercise.
We have recently compared groups of depressed and non-depressed
CFS patients over the age of 45 to a comparison group of patients
with major depressive disorder. The technetium HMPAO SPECT scans of
the depressed patients showed bilatral orbitofrontal hypoperfusion.
The CFS patients had only right dorsolateral prefrontal hypoperfusion
rather than orbitofrontal. These results were highly significant.
The implications of this study are perhaps that amygdalar lesions are
more involved in depression, while hippocampal lesions are
pathogenetic in CFS, and that hemispheric asymmetry is present in
CFS. To quote Joaquin Fuster: "Nauta (1964) pointed out, on the
basis of primate data, that the orbitofrontal cortex is connected
mainly to the amygdala complex and related subcortical structures,
whereas the dorsal prefrontal convexity is connected to the
hippocampal and parahippocampal cortex ... The functional
significance of prefrontal connections with the limbic system is
still unclear, but in all probability these connections involve the
prefrontal cortex in neural functions that maintain and protect the
organism's internal milieu. The reciprocal connection between the
dorsolateral prefrontal cortex and the hippocampus, through the
entorhinal cortex, are probably involved in cognitive functions ...
."28 If the abnormalities seen on SPECT are primarily related to the
regulation of regional cerebral blood flow, a differential expression
of the potentially vasoconstrictive IL-1ra mRNA29 may be involved.
Other IL-1 inhibitors, such as TGF-beta and IL-10, which also inhibit
the vasodilator nitric oxide, should be considered as well.
One of the minor criteria in the CDC case definition for CFS is
severe post-exercise fatigue lasting 24 hours or longer. This
symptom is reflected in post-exercise SPECT scans which usually have
much greater degrees of hypoperfusion than baseline, as seen in
Xenon133 scans done the same day and the next. Limited numbers of
post-treatment scans suggest that improvement in regional cerebral
hypoperfusion is correlated with lessening of symptoms. It appears
that the hypoperfusion is a reflection of an underlying metabolic
abnormality, since agents that increase cerebral blood flow do not
reliably improve CFS symptoms. The temporal lobes and orbitofrontal
cortex are part of the limbic system. The dorsolateral prefrontal
cortex is a heteromodal association area related to the paralimbic
cortex. Brain SPECT allows a quantification of functional
abnormality which is not based solely on self-report. It has
significant relevance to the work of Renoux on lateralization of
cortical immune function30 as well as to lateralization of 5HT2
receptors.31
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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