MediTest
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?

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 Wheldon, Chuck Stratton, 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 Cpn 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 CFS/FMS since December 2004.

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 Wheldon, Charles Stratton, 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

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

Dr.Juguilon is my current doctor..Saw her a month ago, the previous visit she told us about this site..Learn she said. So I have tried. Last month I asked at least twice about going onto the next stage of treatment. The azith or rifampin, she said to wait and come back in Feburary,,, Feburary, 90+ days of more FATIGUE, MUSCLE PAIN, WEAKNESS, BRAIN FOG, STUGGLEING TO JUST GET OUT OF BED, Going to work everyday, trying to be productive and helpful..The people I work with know what I am dealing with. can not cover it up like I did for the first 5 years.. All I do at home is rest sleep rest and sleep.. what is next . I am tough but it sure would be nice to not hurt for a while...Thanks for letting me vent..

You really need to take the azithromycin to avoid the danger of resistance, so please try to tell her.  Or write to David, or ask her to contact him!  We have both enjoyed chatting with you over the last few days, by the way, so don't worry about that!.....Sarah

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.

MnMs- I am sorry to hear about things being the way they are.  I know for myself that whenever I call my accountability person just by her telling me that she went through the same things helped so much.  I know exactly what you are saying.  I am a single mother of a two year old boy.  I lived 3 hours away from any family and was an office manager for a plumbing company.  I hired a friend of mine from church to be my assistant and he ended up covering up everything for me when he knew I could not do it anymore.  As I sit here now on unemployment sleeping on the floor at my parents home.  Having lost my apartment, job, health, and my fiancee I can honestly say I know how you feel.  I cried my eyes out when the doctor delayed my abx for a week.  Now I can see why due to the intense endotoxin release (Sarah is right though and you should try to push the more abx to avoid resistance).  I now have six months or less to get well or else with a family that believes this sickness is ALL IN MY HEAD.  Even though I have tested positive for this disease, anemia, Hashimoto's, hypoglycemia, and mycoplasma pnumoniae.  I give myself five injections a week take over 33 pills a day and somehow this is my crutch???  I had 15 different doctor's tell me I was depressed and have generalized anxiety disorder with talking with me for 5 minutes writing a prescription and sending me on my merry way back to hell.  I have my son's father wanting to go back to court to fight for full custody of my son, and I just found out today that my car needs new brakes, routers, and tires.  Honestly it's extremely tough at times and I find myself crying my eyes out through the day.  I often ask myself, "Can you make it one day without crying?'  So know this your not alone in how you feel and the things your going through.  The funny thing is I know God has better plans for my life and my hope and trust are in him (that may not be your belief, but it's mine and I make no excuses).  Thank God the things that we go through...we go THROUGH.

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 D, 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 CFIDS.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 Cpn, 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 CFS 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 abx) 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/FMS since December 2004.

D W

This clear study supports the view that dietary supplementation with Vitamin D protects against MS.

 

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 supplements 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

 

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Grandma Knew more than medicine
Great study! Thank you for posting it. And it also importantly indicates that it is not food but supplements 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

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

I am going to write e mail my doctor today and ask once again to start the azithromycin or at least something similar to go along with the doxy.. All she can do is say wait right..I also thanked her for telling me about this web site..It has helped me so much..