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To have confidence in oneself..ohh how much different my life might be
Doctors
Submitted by MnMs on Mon, 2005-12-12 16:58. All to often in the past 13 years I have felt betrayed by the medical profession. Hoping that they really care and are truly interested in helping me to treat and get over this sickness that I have struggled with for so long..To try and continue to work while dealing with this has been a battle in itself.. Putting my family and the people that care about me is also such a deep feeling of guilt that I am putting them through this never ending struggle..Will it never end?
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MnMs- We've all been there.
MnMs- We've all been there. I hear the anger, frustration, hurt and cry for help in your short and to the point blog comment. I know myself of the "guilt of the ill," when incapacity gets transformed to a feeling of inadequacy, and inadequacy to shame. It's bad enough to be ill, we don't need to add shame and guilt to the process. I'm a psychologist, and my friends who are experts on the area of shame say that shame occurs in a context of lack of support, that it is a feeling brought about by disconnection and isolation. It is only through support, they say, that shame can be healed. I think perhaps you are discovering that sense of support here, and by contrast to how you have been abandoned by doctors and isolated by your illness, you can feel now how much shame and guilt you have been carrying and your anger at that can emerge. That's healthy, to begin to externalize what has been wrongly internallized. In other words to mistake your incapacity and others helplessness to help you as something bad and wrong about you, and recognize what has been bad and wrong about the medical system. Doctors are trained in a technically challenging and rigidly narrow system. Most of them were nerds in high school and college, and covered a lack of social skills and low emotional intelligence with the social garb of "the doctor." I have read a study that says that on entry to medical school about 60% say that their motivation is to be "healers" versus technicians, and that on graduation only 20% now see that as their role. A terrible thing medical education and the demands of modern practice does to aspiring young men and women. They are also punished and ostracized if they step out of standard accepted practice, which does not encourage much creativity or stretching beyond the accepted limits in order to help the patient, that's assuming that you see the patient as a person and not as a disease-challenge. Please remember that there are doc's like David Wheldoni, Chuck Strattoni, Mike Powell and others, who are taking great risks in treating us with these "non-standard" protocols. We bless every one of them, named and unnamed, out there. It is our job to create the climate that not only accepts but demands that these brave souls be heard, and that to accept anything less is substandard treatment. My own doc I will name: Felicitas Juguilon of the Cleveland Fibro & Fatigue clinic. She is unfamiliar with the protocol and overwhelmed already with keeping up on the information she is learning in other fields, yet has responded to every suggestion I've made as I've learned about the Cpni protocols. More importantly was her response to me when I told her I was going to consult with Mike Powell who has a lot of patient experience with the Protocol, and was that okay with her as I wanted her informed about what he was doing with me. She saidd, "I want you to feel better, whatever you have to do. That's all I care about is that my patients get better. Let me know what he does with you so I can learn more about how to manage this." Wow. No ego in that one. Wants to learn. Can hardly believe she has a medical degree! So, hang in there MnMs.
On Wheldon/Stratton protocol for Cpn in CFSi/FMSi since December 2004.
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral
Albert Einstein said "It is
Albert Einstein said "It is amazing when curiosity survives a formal education". That is not verbatim but close enough. After all, it IS the thought that counts. Applause to your very sensitive doctor, Jim. She is one of the small corps of your list. We also have David Wheldoni, Charles Strattoni, Ram Sriram- and probably those I don't know of. I hope to be able to add my doctor to that list in the future.
Rica
If you come to a fork in the road, take it. Yogi Berra
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
Dr.Juguilon is my current
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To have confidence in oneself..ohh how much different my life might be
You really need to take the
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MnMs- I am sorry to hear
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Can someone give me your
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To have confidence in oneself..ohh how much different my life might be
MnMS- I have no comment on
MnMS- I have no comment on the Marshall protocol specifically, and really do not want to lend this website to any discussion of it, there being lot's of other places that talk about it on the web. See http://lassesen.com/cfids/MarshallProtocolRisks.htm and especially see that website in general for thorough discussion of the benefits of Vitamin Di, including the latest:
Vitamin D increases effectiveness of antibiotics Blood levels of 25-hydroxy-vitamin D were measured at baseline, day 7 and day 49, and the study also assessed anti-mycobacterial immunity by means of an assay that measured mycobacteria levels by attaching a luminous probe to mycobacteria.
Mycobacterial immunity was 20% stronger in vitamin D recipients after six weeks, but among those who were vitamin D deficient at baseline the difference was greater. Vitamin D recipients in this subset had mycobacterial levels 49% below those of the vitamin D-deficient placebo recipients (p<0.0001). http://www.aidsmap.com/en/news/5442DEBA-9C00-432E-A26C-BF11BDC438A0.asp The disease described above is an APS illness, so it is very relevant to CFIDSi.Note 49% below means that those that were not given extra Vitamin D has almost DOUBLE the infection levels. http://lassesen.com/cfids/vitamin_d_prospective_studies.htm
In relation to Cpni, and from all my reading and research and much of the research posted on this site, it appears to me that Vitamin D is an essential immune system booster. The studies citing the epidemiology of MS as related to climates which have less sunlight is an example, this being clearly linked to lower vitamin D production and resulting immune lack. Dr. Powell, for example, uses quite large doses of it at first for many CFSi patients as they are quite depleted. It has seemed to me that any protocol which seeks to severely limit Vitamin D would be contraindicated in Cpn, and other infectious problems which require better immune functioning. I have seen comments on various lists of people who have severely worsened on Vit D depriving protocols.
In addition, the low-dose antibiotic and monotherapeutic (single abxi) approaches clearly are not adequate treatments of Cpn, and risk creating bacterial resistance and more chronic infection. On Wheldon/Stratton protocol for Cpn in CFS/FMSi since December 2004.
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral
This clear
This clear study supports the view that dietary supplementation with Vitamin Di protects against MSi.
Munger KL, Zhang SM, O'Reilly E, Hernan MA, Olek MJ, Willett WC, Ascherio A.Vitamin D intake and incidence of multiple sclerosis. Neurology. 2004 Jan 13;62(1):60-5.
BACKGROUND: A protective effect of vitamin D on risk of multiple sclerosis (MS) has been proposed, but no prospective studies have addressed this hypothesis. METHODS: Dietary vitamin D intake was examined directly in relation to risk of MS in two large cohorts of women: the Nurses' Health Study (NHS; 92,253 women followed from 1980 to 2000) and Nurses' Health Study II (NHS II; 95,310 women followed from 1991 to 2001). Diet was assessed at baseline and updated every 4 years thereafter. During the follow-up, 173 cases of MS with onset of symptoms after baseline were confirmed. RESULTS: The pooled age-adjusted relative risk (RR) comparing women in the highest quintile of total vitamin D intake at baseline with those in the lowest was 0.67 (95% CI = 0.40 to 1.12; p for trend = 0.03). Intake of vitamin D from supplementsi was also inversely associated with risk of MS; the RR comparing women with intake of >or=400 IU/day with women with no supplemental vitamin D intake was 0.59 (95% CI = 0.38 to 0.91; p for trend = 0.006). No association was found between vitamin D from food and MS incidence. CONCLUSION: These results support a protective effect of vitamin D intake on risk of developing MS.
David
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D W - [Myalgia and hypertensioni (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now; just supplementsi and IR sauna. Morning BP typically 105/75]
Grandma Knew more than
Grandma Knew more than medicine
Great study! Thank you for posting it. And it also importantly indicates that it is not food but supplementsi that make the difference. A favorite joke MD's used to like to tell was that vitamins only supply the toilet with extra as it all goes out in the urine HAHA; not really very funny. The attitude was that you were a fool for doing any such thing. Yet olden days Mom's that gave their kids cod liver oil did them a favor! All that vitamin d in there. My mom's mom gave her cod liver oil every winter. An old wives tale comes true, eh?
marie
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
I am going to write e mail
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To have confidence in oneself..ohh how much different my life might be