Lupus and Antibiotics

[Anonymous]

You know… That whole Deadmann thing started out as a morbid joke. Those who know me understand that I tend to laugh at things instead of letting them take control. I figure that if you can get through what I have and not be sitting in a bell tower with an Uzzi, lurking in a cabin in the mountains writing manifestos, or hanging from a short rope, it takes a bizarre sense of humor. After the torture I was told I would never walk, my right arm would need to be removed, and I could expect a relatively sort stint in a nursing home before either the boredom or the bad TV would kill me off. I was supposed to be dead a long time ago if I believed the docs. None of that happened, so I fooled the quacks for a long time now. Since then I have come close a couple other times as well. I got way too close this spring when I could no longer eat and I thought things had finally come to the finish. I guess I am not done yet. So you see that the moniker is a way of spitting in the face of death, not succumbing to it. Fear has to be brought down to size or it wins and I am not prepared to let that happen.

However… You may be right. I’m only into this months now and I have a long way to go, but the progress makes me feel a lot less like that kind of jest and more like I’ve got a chance to rejoin humanity. I can also see that not everyone gets my twisted humor and it may give a wrong impression. Being probably the least PC man in captivity, sometimes I forget that. So I will give it some thought, perhaps see how this goes (I am still waiting for the shoe to drop – having a hard time believing that after all these years a handful of pills could really be the solution!), and change the name if I am allowed to as a celebration.

[A Friend]

@deadmann wrote:

I have been communicating all the info I can find to my daughter. She’s definitely thinking on it, but seems reticent. I think the problem is that she sees a bad situation that is under marginal control after a lot of suffering and is frightened to make changes. She is getting the typical immune suppressing drugs and says she is ‘controlled’ but it seems like she has lots of flares – especially when stressed at all.

Deadmann,
Rushing this am. Wanted to share something with you for your daughter (had a personal name in it), so sent you a PM. You can see a notice you have a PM at the top of the screen.
Best,
AF

[Eva Holloway]

Dear deadman,
my issue was close to yours, not yet as severe but I spend 20 hours in bed every day, hurt all over, had sores on my feet, my hands were swollen and I had to wear gloves. I had a real bad sinus infection and my rheumy told me no when I asked her about antibiotics, so when I had to see my pulmonary doctor and asked him about some medication for my sinus infection he wrote me a prescription for Biaxin. After four weeks I started to feel better and that’s when I started to research online and found all the info from Dr. Brown, found a doctor and thankfully doing lots better.
Keep going,
Eva

Eva Holloway

[Anonymous]

Eva: I don’t know whether to laugh or cry about this kind of thing. I guess we should be happy that we found something to help us, right? The problem is that at times you think about the time wasted and the opportunities missed and start making lists of those you want to hunt down and give a whack to the back of the head. What were they thinking, we ask, but the answer appears to be that they weren’t. I am glad to hear you are doing so much better!

For the record – I am up every day now, doing things. My poor muscles have decided they are going to rebel against being rudely awakened and asked to perform again. I feel like someone beat me from head to toes with a 2X4 what with all the aches. However, it is not the grinding, sickening pain that has haunted me for these long years, but just the muscles protesting the end of a long vacation. They’ll get over it. I just wanted to say that for the first time in years I am noticing the improvements through this agony and not just the failings and that is both refreshing and heartening.

Now if I can just find a way to make this trial pay off by seeing my daughter regain her health. Everything has a purpose.

[Eva Holloway]

Dear deadman,
this week I have been making blackberry jelly, we have about 9 gallons of them in the freezer and now the figs are ripening so I will have to make fig preserve. Years ago I could not have done this. There was a time I could not even stand much upright, now I am lots better.
I am also taking LDN (low dose Naltrexon) it has helped me a lot. I am able to sleep at night, seldom getting up unless I drink too much water before I go to bed.
Had had some dental work done since I have Sjorgren syndrom and it does a nasty job on your teeth. Still working with the dentist, at least she knows my issue and u=is very helpful. To go to my doctor I drive 3 hours to East Texas and to go to the dentist I drive 4 hours to west Texas. But what we do for our health. So tomorrow I drive to the dentist and next week to the doctor.
You can read my story. I updated it once in a while.
Eva

Eva Holloway

[Anonymous]

I gave up. I have tried to present evidence. I have dug up and sent entire texts of research, clinical trials, and more. I have sent links to many more sources. I have described or sent portions of messages sent on this forum. At best I am met with a wall of silence. I have become the crazy old man ranting away about magic pills delivered from some fantasy world. It’s now to the point where my daughter has stopped speaking to me rather than even having a discussion, considering the information, or assessing the risks. I guess all I can do now is hope that the inevitable misery and decline she is headed for will be less painful than it already has been and all signs indicate it will be. I am absolutely appalled by the idea that given a choice between steady decline and eventual complete disability and death OR the possibility of a relatively risk-free chance to lead a less painful and longer live, she is choosing to stick her fingers in her ears, pretend things will just magically be OK for her when it isn’t for anyone else, and avoid any changes. Nothing I have ever seen before and no part of her character has prepared me for this. She is a very intelligent woman, with a good degree (graduated Suma) for a prestigious university, and as a rule is rational and logical, but this is a complete break from that.

The problem appears to come from two directions. One is the fear tactics from the quacks. They have her convinced that the magic brew of immune suppressants she takes is so fragile that any change will make it worse. Only their divinely inspired mojo will result in anything good. Go against this, or question their all-encompassing authority and she will be made to suffer even more. They tell her that any stress could result in collapse. They tell her that no other treatment is real. Given that she has almost lost a leg and now had the cancer/inflammation scare and is facing removal of her reproductive organs, she lives in fear that any change will make it worse. It’s like a child who has been abused by her parents: Covered in cigarette burns, scarred with beatings and crippled with broken bones, when the child welfare people come to rescue her, her screams and pleads to stay with her abusers. Better the devil you know, than risk the potential that what horrors you have survived could be made worse by change and things you don’t know but only fear. These people make me sick.

The other is ignorance – purposeful or by default. Given her responses to me, she has not taken the information seriously. For example, she is convinced that taking an antibiotic will destroy the delicate balance that her personal savior rhuematologist has wrested from the vague and foggy netherworld of immune suppressant therapy quackery. She will not as much as discuss it with anyone including her doctors as ANY change is bad. Or that despite all the others who have found remission from lupus, that this is a fantasy and is not worth even looking into. And on and on… It’s as if no science, no anecdote, nothing will be worth looking at and doing so will only upset her so she has closed off and walled up. At one time only leeches and blood-letting were helpful according to the quacks. For many years women were routinely given hysterectomies – for no medical reason, just to prevent hysteria (what the process is named for) that meant she was being too much bother to someone. So many went along like lambs led to slaughter because they either were not informed or refused to know about what was happening, even after these things were shown to be garbage and new treatments were available. My own mother included. She was given one to ‘cure’ what we now know as social phobia. Imagine how many more would suffer and die if we ignored the advances of the last 50 years?

I am writing this for a purpose. It breaks my heart to see this happen and to know that I have failed so badly as a father that my daughter will trust strangers whose main goal is to line their pockets with her money at the expense of her health rather than listen to me and others. However, I also realize that at this point pursuing this with her will mean the loss of the relationship – she is willing to simply stop speaking if I mention antibiotic treatment for her lupus. So there’s nothing else I can do. I am sure others have met similar resistance and avoidance for the same kind of reasons. Like others, I will have to keep my mouth shut while I watch her inevitable decline and death from something we know can be treated. Sooner or later some infection or malfunction of her immune system will mean that she will suffer and probably die. It nearly happened with her leg infection. So I now understand how many here must feel when they are faced with similar conditioned responses from those they love and how devastating it is for them. You have my sympathy. I am not sure how I will handle this except that right now I am furious at the venal monsters who perpetuate the masking treatments – knowing they will fail universally – and prevent their patients from getting treatment that could well avoid this. There has to be a special place in hell for such people.

[A Friend]

Deadmann,

My spouse of many years has seen firsthand my own journey, ups and downs, and some amazing results. But, visual is not the same as actually being the patient and feeling the pain/discomfort the problems brought, and the exhileration of turning things around.

He continues to prefer the easy way for himself, and takes RXes I wouldn’t (no, couldn’t) take. He was a pretty robust, Blood Type O, individual. However, the years and inherited tendencies for heart disease have taken and are taking their tole. Add to this, he is a sugar-o-holic and that has added greatly to the heart disease problems, as well as symptoms of overgrowth.

I’ve had a choice of trying to be responsible for his health (which I don’t want the responsibility for — it’s a “no win”) or treating him like an adult (but occasionally giving him a copy of something he might benefit from knowing — but not too often, for his reading file). I could not in good conscience not share some of this. However, all has “gone in one of his ears and out the other.” I decided sometime not be the “food and medicine police”, but by my actions and words assure him I care about him.

If you decide to tell her you are doing something similar, I wish you could find a way to ensure she promises to watch the two videos about Dr. Burzynski’s work with children with inoperable glioblastoma, usually fatal brain cancer, and getting them well — and our own USA FDA and some state Medical Boards filing suit against him numerous times, costing him millions of dollars, and some of their people trying to steal and patent Dr. B’s research discoveries. Maybe then, the “light bulb” may come on that protocols and treatments that work may have actually been suppressed and/or maligned, causing patients who need these treatments to think them as quackery. (Both of these videos have the links in posts on RBF BB. The 2nd one has just been posted a day or two ago, and it will be free to watch for a week or two — both from Dr Mercola’s web site.

There is also a fairly new organization of outstanding medical doctors who formed an association and have a fairly new web site — ACIM Connect — who awarded Dr. Burzynski a “Lifetime Achievement Award” about March 2012. Doctors are able to go there and register for courses for continuing education credit. Hopefully, many will take advantage of this opportunity… and learn more about integrative medicine.

It might be that the best revelation for your daughter would be for you to take care of yourself and get as healthy as you can! The example of one well father is worth a million words.

Peace,
AF

[Anonymous]

Probably right and spoken like a true Texican. I have not tried to interfere with her as I have always thought she was bright enough and had a good enough grip on reality that I did not need to. I have simply been very proud of her and at some point a parent realizes there just isn’t much he can do. The work of art is complete and now it’s up to them to do with it what they will.

This is really the first time I have really got involved to the point of digging up all the info and making the case for this treatment. She has some preferences dealing with ‘natural’ foods (ie: food in such short supply that were everyone to try to eat it instead of what we have, massive starvation would result, instead of merely over-inflated prices) and some fad supplements I think are bogus, but that’s her business and don’t have the threat associated with lupus. If she wants to pay double for feces-covered vegetables I can’t stop her, I just have to hope she doesn’t get e-coli like so many do. I guess that I took microbiology and she didn’t may have something to do with what she doesn’t know about microorganisms. I thought this, however, was important enough to step in and try to head off the otherwise inevitable.

I know people don’t always act like they have functional brains. I remember a gal talking to another in line at the grocery. She was saying how she and her husband were on their way home from the hospital. He’d been in for, and nearly died of COPD caused by smoking. He was on oxygen for a week and tried several times in the hospital to smoke anyway. Now, on the way home, he was insisting that she get him cigarettes and she had given in. If he insisted on killing himself there was little she could do as she saw it. I wondered if there wasn’t an insurance policy and a Darwinian lesson to be learned…

For now I will leave it be. I hate it, but not because I want to be controlling, but because I believe that the best ideas win out and ignoring them at risk of your life is irrational. I will let her alone with it now. I hate to say it, but I suspect that this will not change until the next time she gets close to catastrophe and I hope it will not be too late. No parent wants to see their kid suffer and I can see this one coming a mile off.

[A Friend]

@deadmann wrote:

Probably right and spoken like a true Texican. I have not tried to interfere with her as I have always thought she was bright enough and had a good enough grip on reality that I did not need to. I have simply been very proud of her and at some point a parent realizes there just isn’t much he can do. The work of art is complete and now it’s up to them to do with it what they will…………..For now I will leave it be. I hate it, but not because I want to be controlling, but because I believe that the best ideas win out and ignoring them at risk of your life is irrational. I will let her alone with it now. I hate to say it, but I suspect that this will not change until the next time she gets close to catastrophe and I hope it will not be too late. No parent wants to see their kid suffer and I can see this one coming a mile off.

Deadmann,

Trust me, I wasn’t criticizing what you were saying, I was identifying with what you said. You love your daughter, and you desire to do everything you can do to make sure she understands about something that could help her. Mainstream medicine has so disparaged integrated medicine that some younger ones may assume it’s “voodoo.” I have four grown children myself.

One out of the four, numerous times over the last 10 years, has brainstormed with me about several problems. The first of the problems was when she was told by a doctor that she needed surgery for carpal tunnel syndrome. [Too long a story, but I “just happened” to have seen and purchased a book in a health store in my mother’s hometown, written by a physician from that little NE Texas city who had been my grandparents’ physician. I was interested in any history in the book about him and the city (I’m a genealogy buff and love the details of an era). I’ve never had carpal tunnel syndrome. Out of curiosity, I had read it. Turned out Dr. Ellis and Dr. Karl Folkers did the research on carpal tunnel at UT Medical Center; and Dr. Ellis wrote the book (Dr. Ellis had patients with these problems, whom he treated and recorded results), and the book gave information about this.)

I asked my daughter not to have the surgery until I mailed her the book and she read it. She read it, began taking the recommended vitamin supplements, and the carpal tunnel went away. Guess this first encounter was the reason she is still asking for my suggestions. Couldn’t find the book just now on Amazon, as it was out of print soon after I purchased the one in Mt. P. The links I just found are: http://www.fetterman-crutches.com/articles/CureCarpalTunnelWithoutSurgery.html and http://encognitive.com/node/5007

I truly believe if your daughter observes you getting better and better, she may begin thinking about your treatments and her treatments in a different light. If not, you will have done what you can do.

Best to you,
AF

[Anonymous]

Trust me, I wasn’t criticizing what you were saying, I was identifying with what you said. You love your daughter, and you desire to do everything you can do to make sure she understands about something that could help her. Mainstream medicine has so disparaged integrated medicine that some younger ones may assume it’s “voodoo.” I have four grown children myself.

AF: Never thought you were and no offense was taken. I saw what you meant. However, it does point out a problem I seem to have: That whereas I know what I mean to say and think I am saying things that are helpful and lacking in any negative context, people tend to think I am angry or upset or simply confusing. I’ve tried for years to sort this out and have not solved it. I still can say, “The sky is blue today”, and someone will assume that there must be something wrong with it being blue, that today is a bad day to discuss sky, and I am angry for bringing it up. If I comment about some scam that I have seen, people assume I mean that all related transactions are scams, that anyone associated is a scam artist, and the person I am talking to in particular is the worst of the ilk. Obviously, I can mean no such thing and yet…

The point is that I worry that my communication is flawed and this failure is what is causing my daughter to reject consideration of this treatment. I have spent so many years suffering and mostly isolated to avoid being a pain in everyone’s hindquarters, I have apparently lost my ability to communicate as I intend. If there is any anger, it is at myself for my own failure and not her’s for misunderstanding nor yours for offering help. I really hope this clears things rather than makes then worse and want to thank you for both your advice and support.

I should say that you are right about my example. I intend to continue as long as it makes sense and helps me improve and not only will I do better but she may take the hint. I’d be foolish not to, after all, considering the success I have already had. For that matter, just for this reprieve – if it short lived or temporary, it is more than I had. If this is all I ever get from it, it was worth it for allowing me to improve enough to stay out of the hospital or assisted living as was the plan just months ago. However, I can already see that there’s better to come.

I over-did things a few days back, trying to fix something that I really should not have tried so soon. It just felt so good to be able to do anything I got carried away. It made my back and legs very angry. (I suppose it might have been Herxing for that matter.) In any event, that kind of thing would have had me on my back for many days or weeks before this treatment. Now, after four days I am already doing much better and it has progressively improved each day – without immune suppressants, NSAIDs, or narcotics. I did take some acetaminophen a few times so I could sleep better, but otherwise just the same ABX regimen. It’s as if something has changed and I am now able to recover faster and the inflammation goes away faster. I don’t know why, I just know it is.

[A Friend]

Deadmann,
Let me assure you… you have nothing to apologize for, or to change. Most of us have been where you are now… and we remember… so well. Your communication skills are great… so honest and clear. Again, I/we (most of us) have been there, and know how you feel, and what you are going through (and how good it feels when we do have a little reprieve!!!). The spoken word in written form does not carry the sound/inflection of our voices…. BUT… here on RBF BB the patients’ words (our friends’ words like yours) come through just as they are supposed to come through. Glad you are here.
AF (the Texican!)

[Author]

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