June 2, 2003

Dear Momma,

I’ve been thinking about you so much since you’ve been here. Yes, I thought about you a lot when you were in Colorado, too. Or in a pickup truck and travel trailer with Poppa. Or living in that incredible home you and he built “on the hill”—El Shadmir. I’m even recalling memories from Colby and the farm.

You know, when Poppa was dying, I remember promising him that we would do everything possible to make sure you were ok. That you would live as good, happy and healthy life as we could possibly manage, and that if you ran out of money, we’d even make sure you get through that. I don’t know how many of the other sibs had a similar conversation and/or commitment, but I think it was most of us. He was just sure no one else knew you well enough—like him—to be up to the job.

Now you don’t easily remember poppa’s dying time, or maybe it’s mixed in with other memories and gets a bit confusing or lost. That makes sense to me. We kids were certainly crazy as we tried to do something we had never done before: help Poppa die at home and in comfort—as he requested. As those days turned into weeks, and then months, that one dying man had worn an entire family to exhaustion. In that process we learned how demanding he could be, and we were able to understand better how much you had deferred to him and his wishes for so many years.

You were with him long before it became obvious that more help was needed as his disease progressed. Just how long did you cover up for him… tried to take care of him by yourself?!

While we cooked, cleaned, visited and made phones calls, you would usually be sitting by his side. You got attention and help then too, because he couldn’t stand to not know you were right there! You watched things that probably didn’t make sense sometimes. We did things for both of you—and especially Poppa—that we had never done before, and that no one had told us how to do, though we’re a pretty darned experienced and intuitive family, so we sometimes “outpro’d” the professionals.

You came to lean on us kids even before Poppa passed. There is no one on this earth who could have been a better companion to him than you. Or so I thought, but then I’ve always held you on a pedestal. Of course now I realize that pedestal was made of chocolate cake, and I love you even more for that—for being a real person and for letting me get to know you more personally the last few weeks.

I want to share some of the things that you may, or may not remember. Please understand that my memory is imperfect and incomplete. There may even be recovered memories—things that never happened, but we remember them anyway. Maybe they happened in another place or time? I don’t know.

We kids started coming to Colby to help you and Poppa more than three years ago—in January, I think. I had noticed on an earlier visit that he needed an electric recliner, as he had become too weak to operate his old one. I was sure I recognized that he was dying because I’ve seen it so often in my friends with AIDS years ago. From there, we kids organized a schedule and system to ensure at least two of us were there at all times for almost three months. It felt like a year.

On Valentine’s Day, three years ago, a couple of weeks before Poppa died, you had some kind of an attack that sort of froze your brain up. I just don’t know any other way to describe it. You were unable to speak, and your face was blank. The doctors didn’t seem to know what had happened either, but they finally settled on calling it an ischemic attack, so they could complete the insurance forms.

We were literally scared nearly to death as the medics rolled you from the house on a stretcher. Poppa got up and held your hand for a moment. I don’t remember what else at that moment myself. It’s all a blur. Maybe someone else can fill in those blanks for all of us.

I think now that I may have seen that look on you before, and it scared me then. I don’t know what year, or how old I was. Maybe 10 or 12? 14?

You had been staying at “the mental health hospital” in Hays. You were there so you could “get better”. We still lived on the farm the night I saw Poppa bring you into the house through the back door. I think someone else there was trying to protect us kids so we wouldn’t see you as he led you back to your bedroom, but I saw your face.

My then childhood-sized brain saw a white faced zombie. I was very scared for you then, too. You know our brains start out small, then grow larger during life until at some point they begin to shrink again and the doctors call this normal, natural process dementia, or if they want more money, maybe even Alzheimers. So I don’t totally trust this memory’s details, but I knew and I know that they had done something horrible to you. And your face was white, and shocked (literally) and you were unable to speak.

Someone told me the hospital in Hays told Poppa he had signed a paper that he agreed not to take you from the hospital unless they said it was OK, and he basically told them to “go to hell, I’m taking her home now!” Or that’s how I recall the explanation I got then. Later I learned that you had been given electro-shock therapy, which in those days was pretty barbaric. I’m not sure what the research shows about any long-term side effects, but I suspect they are sufficient to explain at least some of the difficulty you had with your memory later.

You looked like that the day they took you to the hospital a few days before Poppa finally passed on. We didn’t know what was wrong, and the doctors in Colby didn’t know what was wrong, but it was the straw that broke Poppa’s denial. He was so terrified that one of you might die away from the other. You spent three days in the hospital and rested. You weren’t even sure you wanted to leave the hospital to come home, and who could blame you? It was at that point that your memory of Poppa’s last days start eluding you—or so it seems to me now.

Poppa finally began to let go, and you were in a daze, in shock. I’m not surprised that you don’t remember a lot of it. I think your mind was temporarily shut down. Or at least some parts of it were. Remember when I told you that God had pulled a curtain over some painful memories so you could cope?

The memories are there, and maybe someday the curtain will be opened… even just a bit. In fact, I think I’ve heard things in our conversations lately that indicate you are already beginning to remember more of that time, but then I often tend to see things as I wish they were.

And since we’re supposed to remember our loved ones and friends by their last words, let me share his to me. The last night he was alive, it took several of us to get him out of his recliner chair in the living room and kind of onto his walker. He could not hold himself up so others did that for him. I was in front, steadying the walker until he got as upright as he was going to get. His head turned up so he could look me in the eyes and said: “Thank God you only have to die once.” He may have thought he walked to his room that night, but we basically carried him and his walker.

He stopped breathing in bed the next morning. I had tried to lift him so he could sit up, but he weighed too much for me to lift as dead weight. Those who were at the house joined him in the bedroom and on the bed… talking to him and telling him it was ok to go. You were there holding him as he took his last breath. You seemed so strong. Maybe it was shock. You have a way of being quite “with it” when the situation demands it of you.

It seemed so normal, somehow. Like we all knew what to do. Some of us had made prior arrangements with the funeral home to keep his body most of the day. We created new family rituals the rest of the day. We cleaned his body. There were new, fresh white sheets on the bed that we had purchased a few days earlier and hid in the garage, as we expected his death was imminent. You and some of us kids anointed him with scented oil scented that Diana and Merrilee had made. I expected a ritualistic stroke of oil on his forehead, but you led the way to making sure his entire body was anointed.

If he knew before he died what we had planned, he would have forced us to make some promise to have his body removed immediately… just like he forbid you or any of us to keep any part of his ashes. It all had to go into the ground! Yes, he had some notions that were hard to live with, and he made them clear, didn’t he? He just forgot to tell us what to do with his body right after he died, and that was a blessing because we were able to create an appropriate bier before he was cremated. To this day I would give anything to know what went through the minds of his brothers and sisters as they came to say goodbye!

The body was taken by the undertaker about dusk to be cremated. I know the next few days become a blur, but we have pictures that show some of what we organized while we waited for the cremains to be returned. We held a service at the funeral home, because poppa didn’t want it at the church. I’m not sure I understand the reason for that, but I’ve heard enough to know he had his reasons, and frankly it was an easy choice for me to live with.

You were beautiful. The picture-perfect widow at the service and at the ‘snack and yak’ at the First Baptist Church afterwards. You must have been in a daze. My strongest memory was watching you go up to the front of the chapel at the end of the service, pick up his Coon Creek walnut urn that we kids had built and finished, and carry him out like a baby in your arms down the aisle as we left. It was so profoundly different than anything so many people in Colby or elsewhere were accustomed to seeing. You carried out that part of your role in our family’s mission to be different somehow. To show there is a way for a family to remain close, loving and caring.

That was three years ago, momma. You came to Kansas City with Gordon and Terry and me a few days after the funeral, just to get a break from the place that had worn us all out. Later Terry and I were taking you “home” to Colby where you were going to live for the time being—or so we thought. We would be visiting you there as often as we could. But some of us kids also made a pledge we would never go through what we did for poppa again.

When we arrived in Colby, a plumbing break had caused a lot of water damage to the house you and Poppa lived in, next to the Jones’. Very little damage was done to any of your possessions, but the house was going to be unlivable for quite a while. With very few options, you moved in with Terry and Kathy in Fort Morgan, where you have been living since. You have moved a few times with Terry and Kathy, and there have been changes there—mostly for the better—like a bigger house.

My recollection of the conversations amongst us kids was that you should live with Terry and Kathy for at least a year to help you recover from your loss and to start healing your grief. We’d then re-evaluate the situation periodically to make sure you were getting the kind of care you needed. We did that last Fall when all of us (except Chris and Derrick) met for our family gathering at Fort Morgan. I hope you can remember some of that! It was such a good, familiar time together, even though our family has changed over the years. You read some things to all of us that you had written in your journal.

Gary, Vicki and of course, Poppa have passed on, leaving us fond memories.

You are the last surviving sibling in your family. You tell us kids you think you will probably grow to be quite an old lady, and we all hope that is so. You’ve done so much for each of us. And in return we—the family—want to help you make the very best of your life at all stages of it.

You have finally passed through much of that hardest stage of grieving for the loss of Poppa. In some things he was right; you do need help to live well. And if you don’t need it, you certainly fare better when you have it. Having you here has been one of the greatest blessings of my life. We are a very strange household/family indeed. I often wonder what you’re thinking as you hear the “kids” conversations—and worse yet, mine! LOL.

It will soon be time to gather as a family again and evaluate how things are going and to help you decide what and where the best place for you to live might be. Terry and Kathy have fulfilled their commitment, and then some. I invited you to visit for two weeks, which has become a month, and is now being considered for another 3 months! You of all people can understand how that kind of commitment can change the lives of those you live with. You and Poppa did it regularly—on the farm; at the hotel; at the house on the hill; probably even while you travelled on the road.

What I have seen since you came here is nothing short of dramatic, Momma. You make your bed most of the time. You hang up your clothes. You still take naps, sometimes right after breakfast, but you also have days when you are going almost all day! Your memory has improved dramatically—especially short term memory about visitors, phone calls, meals, appointments, etc. I don’t know if this is due to the memory medications; the memory exercises we do sometimes; or just better compliance of taking all your medications as prescribed.

You have one doctor who wants to blame your memory problems on Alzheimers. The problem with that is that memory doesn’t get better in people with Alzheimers, and yours has certainly improved since you’ve been here—especially your short term memory. The other problem is that the neurologists who have examined you have said there’s no evidence of Alzheimers at this time. My guess is all the above have been helpful, and that there is no reason at this time to be concerned about Alzheimers. You’ve proven to me that you are very cogent and aware of what’s going on, though you are also able to mask that if you feel threatened or are uncertain about something.

When I’d visit you in Fort Morgan, you seem more despondent… more depressed. I think it was plain old loneliness. You are a social creature! One of the things I hope we can accomplish here, if you stay until September, is to meet other seniors and/or participate in some group activities. You have suggested staying with us in Kansas City until September. That’s a big jump from two weeks, but Michael and I (and Chris and Patrick) all want you to stay as long as you are comfortable.

I want to try to outline the various options for your living situation after September as I see them, and some more games we can experiment with in the meantime. Some of us sibs have been communicating and looking at possibilities. I will not spend a lot of time on some, because they are not likely scenarios, unless one of the other family members say otherwise.

Since the earliest days, before Terry invited you to live with him and Kathy, the best choice seemed to us to be an “assisted living” situation. We even showed you one in Greeley. Without saying it directly, you have always managed to indicate to us that you do not want to live in “one of those places”. It seems to me that you consider them the same thing as a nursing home, and that somehow it would indicate you have lost all of your own independence. Frankly Momma, it would have been difficult and expensive to get you into an assisted living facility three years ago, because you were much less independent than you are today! This option will be discussed some more in a bit.

You might want keep the status quo: living in Fort Morgan with Terry and Kathy in your new apartment, if they are still able to make that commitment. It is very nice and you have made some friends there. When we discussed “assisted living”, you’ve begun to tell me the advantages of Fort Morgan: Meet and Eat, and the Widows’ Group. You didn’t mention any disadvantages, but Terry and Kathy are both full-time workers and busy with their church. This leaves you at home alone for long periods of time. You sleep most of the time, missing appointments or Meet and Eat. As much as they do, they cannot and are not available to help encourage you to get up, or to eat or do something, which I or someone else does almost daily with you. They would need to be given an opportunity to determine if they can continue doing what they do, and if it would help you continue to improve, or if you will return to isolation, loneliness and poor eating and health habits.

Living with Lisa and Cameron sounds wonderful, but there are too many ‘ifs’ for it to work right now. And when Lisa has her new baby, she is going to be a very busy girl.

Finally, there is the slight possibility that you live here with us in Kansas City. I have been telling others in the family and they have been telling me that this is not a good idea for a number of reasons—chiefly my health and stress—and I have agreed. It takes some time and energy to help you and I want to do it—just like the others want to—but realize they cannot. However, Michael has asked me to reconsider. So has Chris. They both want you to be able to live here. Michael enjoys your company. We have a big house, and we can hire some help to lighten my load. So I’m leaving that option on the table for now.

You and I have spoken a few times about these things Momma. And I enjoy every visit I’ve had with you. The quick trips to Colorado took more energy than having you here for an extended visit. I think we’ve found a good specialist for your general medical care and that we can find just about anything you need medically. My experience with living with HIV gives me some insight on managing meds, and ways to save costs there.

What I haven’t told you is that I’ve been sneaking around looking at retirement homes while you were sneaking ice cream out of the freezer, because all of us kids think that is what is best for you. We think more social interaction with other seniors and with other widows is something that you would benefit greatly from. That’s one thing you’re not getting now and it’s what you mentioned as “pros” in Fort Morgan, though you didn’t always take advantage of them.

I wish you would forget everything you’ve ever heard or seen about “old folks homes” in the past. The world has changed, and despite all my kvetching, many things have changed for the better. You would basically have your own apartment (like in Fort Morgan, though smaller), and lots of people around you. Not drooling old men or folks that can’t talk, but others like yourself, who like to visit, do crafts, watch television, eat good food and sleep! No one will make you stay where you don’t want to be. You can visit any of us just like you can and do now.

Here’s what I am asking you to do between now and the family gathering in September. Go with cousin Kathy and me to visit a retirement complex near Liberty, where your dad went to school. We can eat lunch and maybe stay for a game of bingo. You can see things for yourself. Visit with the people who live there and ask them if they like it. We have already put a deposit down for a room, because this place is very nice and difficult to get an apartment or room. It is month-to-month, so if you’re not happier and it proves not to be the best thing for you, we will know because you tried it, not because you are afraid of change.

At any time you can call me and I will come get you. That’s a promise. I absolutely do not want you in a place that makes you unhappy. And I do want you to be able to say “I tried that”, rather than become evasive and talk about other things because the idea of living “alone” with strangers sounds so scary to you. It will take some time to get used to, I’m sure. Just like any new situation does. But you are so sociable, I think you just might like it so well that it will be hard to get a lunch date with you!

The family will gather in September as planned. We will have all the options above and maybe more to discuss and consider. Any decision will require your approval, of course.

This is one of the hardest letters I’ve ever written, because I feel like it must seem your kids are abandoning you, when that is the last thing any of us wants to do. At the same time we want you to be our mother, not our dependent. And we want to be your children, not just your caregiver.

I think you have gotten much better. And I think that will continue. Will you talk with us about this? You are very cogent and able to make decisions that affect you, in my opinion. It seems that this subject is the most difficult for you, but I believe you can express your wishes and your concerns. I also believe you are able to disguise what you are really thinking or feeling if you choose—or perhaps it’s even sub-conscious. It’s up to you to decide how much control you want to have with the rest of your life. Please don’t let fear stop you from living as active and fulfilled a life as you can.

I am sending this to all of your children and grand-children, along with a letter from cousin Kathy, who is also impressed with this place in the country, yet only 20 minutes from our house, and 5 minutes from Michael’s work!

I love you. I want to keep my promise to Poppa. All I ask is that you help us make the best choice, and that you try to be brutally honest, rather than let the “forgetfulness” slip in, no matter how tempting that may be.

Your son,
Jon

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That’s it. I have tried as many alternative treatments as I can think of to reverse the decline. I will be starting my third round of pharmaceutical ARVs as soon as I can get a prescription and fill it.

This decision has been a long time coming, and in hindsight, I probably should have restarted a few months ago. There’s nothing magical about 97, or being below 100, but it’s as good a breaking point as any. I’ve long argued that there are two things to keep in mind about CD4 counts: one is the long-term trend; the other is single- or low double-digit counts.

No bounce left

For years, my CD4 count has bounced like a ping-pong ball, but that changed a few months ago. It’s been more of a straight line decline since last October, and a drop from nearly 500 in December 2010. Eight of the last nine tests have reported a decline. The CD4% (percentage), which is another way this marker is measured, has dropped from 20% last October to only 9% several days ago. I know some people who dismiss flow cytometry—the procedure used to measure t-cells like CD4—as unreliable, and I plan to debunk that notion in an upcoming post.

Look folks, I’m not willing to wait for a serious infection to hit me before taking action. I have unquestionably performed above and beyond due diligence and have I tried many of the most promising alternative therapies. While those treatments may have been beneficial, and may have even slowed the decline, they haven’t managed to halt it, let alone reversed it.

To those who might be disappointed in my decision to restart ARVs: trust me, no one is more disappointed than I am. I might even be a bit discouraged… for about 5 minutes. Then I remind myself that when I first quit these drugs 13 years ago, I didn’t know how long I could go without them… Weeks? Months? I had 2 1/2 years free from them then. The second time I quit the drugs in 2003, I didn’t know how long I could go without them. I never imagined I would have more than nine years of freedom, and I don’t regret a day of it. In fact, I am very, very grateful.

I can anticipate one question from certain AIDS Rethinkers: “Aren’t you making a treatment decision based on laboratory markers alone?”  Yep, I am. The alternative is to wait until I get PCP or KS or some other weird infection that people with more robust levels of these cells are not likely to get. We AIDS questioners have seen what happens to those people who insist on avoiding the drugs at all costs and I don’t like the odds I’ve seen.

I don’t know what these drugs do, and I seriously doubt that they are truly “antiviral”, but they do have some effect on specific immune markers, such as CD4 cells, and their ability to rescue some extremely ill Affected people from the brink of death is indisputable. I freely acknowledge that taking them solely based on CD4 count is a far less certain choice; in fact it’s little better than a crap shoot. There are potential risks, regardless of the decision and I’ve just chosen to cast my dice on another round of the drugs. I pass no judgement on those in a similar boat who choose a different course.

Return of Intermittent Therapy

I don’t plan to take ARVs for the rest of my life. I don’t plan to take them any longer than I feel necessary to achieve an as-yet-undefined point of restoration of laboratory markers. In the early 2000s, I was attracted to the notion that a poz patient might be able to cycle on and off of the drugs. This theory was coming from the AIDS mainstream shortly after combination treatments became popular, and though it didn’t last very long with the orthodox AIDS folks, I have not yet completely dismissed it as a possible option. The concept wore different names:  Structured Intermittent Treatment/Therapy (SIT), or Structured Treatment Interruption (STI). I am just picking up where I left off. How long will I need to take these drugs to increase my CD4 count to a level I’m comfortable with? That’s what these drugs are designed to do.

I am re-evaluating my goals and objectives. I want to minimize my risk of adverse effects. I don’t know yet what that means, exactly, but I’ll keep everyone informed. I may do some other crazy things, like reduce the dosage, or take them less frequently.

There are a not insignificant number of people who are playing with variations of STI/SIT. I’ve corresponded with people who are taking their drugs at half dose, for example. Others have told me they quit their drugs altogether, but take them for a week before doctor visits, just to make sure the drugs will show up in their blood tests. And they’re getting away with it. Unfortunately, it’s impossible to draw any meaningful or useful conclusions from such haphazard occurrences.

Don’t blame the AIDS dissidents

I never intended to be as involved in the community of AIDS dissidence as I’ve found myself to be. I was asked to be a moderator at the forums then known as AIDS Myth Exposed, which has been renamed Questioning AIDS. A good name, if you ask me. Just like many of the folks on the orthodox side of AIDS, we admit that there is much we do not yet understand about immune dysfunction.

The role of role models:

I chose to tell my personal story as a form of journaling and therapy. It was never my intention to become a role model for others who are Affected with a HIV-positive diagnosis, but I can tell from the emails and messages I get that some people see me and others who are resisting lifetime ARV use as exactly that:  role models. Too many of the role models in AIDS dissidence are gone, and not necessarily because they did not take their drugs:  Christine Maggiore; Emery Taylor; David Collins; Karri Stokely; and most recently Maria Papagiannidou are some I know of personally.  There are others.

David and Maria did take ARVs. What we don’t know is whether they waited until it was too late, or whether they had a disease process that not only did not respond to the drugs, but was actually hastened by them.

Yes, the ARVs can also kill people, and they do. When my friend Mark Cheney died several years ago, his doctor confessed to me that he had never seen such a case of simultaneous multiple organ failure, and that the cause was undoubtedly the so-called “salvage therapy” attempted with AIDS drugs.

The main reason I intend to continue to tell my story is in hopes that someone can find a way to put the pieces together. I’m pretty sure that there is a way to manage “AIDS” that does not require a lifetime regimen of toxic drugs, but may require intervention with them at some point. I don’t expect to discover “the answer” on my own, or even in my lifetime. I do know that the AIDS establishment is not going to discover the answer as long as they are so beholden to the profit-driven, “free-enterprise” pharmaceutical industry.

That means it’s up to us, the Affected, and the only way we are going to learn is for more of us to share our stories and our experiences. What good are role models who don’t inspire others to share their own stories?

Hit it hard, hit it early?

As I review my own expectations around SIT, I realize that I first started ARVs within weeks of seroconverting (testing HIV-positive). I know because I have a negative test result that preceded the positive one by just a couple of months. This may be one critically important factor in the success or failure of structured treatment therapies. In an article written for TheBody.com in 2000 (which now carries a disclaimer warning of out-of-date information), Dr. Mark Dybul, MD discusses this: (.pdf version also archived here for posterity.)

 There may be a difference in the impact of STI as immunotherapy based on when a person initiates effective HAART, i.e., during the earliest stages of disease (primary infection) or during later stages (chronic infection). HIV-specific CD4 cells may be important to mount and maintain an effective CD8 cell response. Unfortunately, except in a minority of individuals, HIV-specific CD4 cells do not seem to be functional after primary infection. But if HAART is initiated prior to seroconversion (i.e., a positive HIV antibody test), CD4 cell responses to HIV seem to be preserved. Therefore, people who begin HAART in the earliest stages of infection may have more potent boosting of CTL with STI.

Call me a conspiracy theorist, but I wonder if the promise of STI/SIT got buried under the flawed SMART study and the influence of Pharma, which obviously has no vested interest in patients doing without their drugs. The concept that ARVs, used sparingly and intermittently, might be able to help a patient “train” their own immune system to deal with HIV (yes, yes, assuming HIV really exists), a sort of auto-immunity, is intriguing. This concept was dubbed “auto vaccination” in the late 1990s.  Again, I’ll let Dr. Dybul explain (though you might want to read this study from the journal AIDS, too):

It has been proposed that if plasma HIV RNA is allowed to resurface in a structured, sequential manner, it might be possible to augment HIV-specific immune responses. The thought is that with each cycle off drugs there will be a stepwise increase in the immune response as the host is again exposed to a certain amount of plasma HIV RNA and that the immune response will not be diminished with the resumption of HAART since the on-drug period is relatively short. This is called autovaccination, which means using one’s own virus to boost immune responses.

To be fair, these are just some excerpts from the article, which is worthy of a complete read, something you won’t hear me recommend about TheBody very often.

Thank gawd for Cipla Pharmaceuticals and the Internet

Now that I’ve decided to resume ARV treatment for awhile, I am finding that I fall through a gap in the social safety net big enough to swallow my now-defunct 2000 VW Golf! I have been eligible for Medicare since 2004, and thanks to my partner, I have always carried supplemental insurance, as well as prescription drug coverage (Part D). Since quitting nearly all pharmaceutical drugs a few years ago, I have never even met the deductible of my drug plan, and this year I opted for a very inexpensive “Walmart” plan. This plan has four “tiers” of drugs, with each tier evoking a higher copay. To make a complicated tale simple, it looks like I will have to pay 50% of any AIDS-related drug costs.

I won’t know which drugs I will be taking for a few weeks yet, but the most frequently prescribed ARV in the United States is Atripla, a three-drug combo in a once-a-day pill form. Atripla costs $1,600 per month, meaning my share will be $800 per month, or nearly $10,000 per year.  My SSDI income last year was $13,100, and that is before paying for my supplemental and Part D premiums.  I also receive about $10K of income per year from a private disability plan that I purchased long before I tested HIV-positive. Other combinations are similarly priced, and I cannot afford any of them.

The only way to qualify for my state’s AIDS Drug Assistance Program (ADAP) is to apply for Medicaid, a federally funded assistance program for those in poverty, administered by the states. I would probably qualify for this program, but there’s a catch. Any expenses paid on my behalf by Medicaid are subject to the Medicaid Estate Recovery Program, which attempts to recoup costs from a beneficiary’s estate upon their death. This mean that if Medicaid pays $10K per year for 10 years, they can seize $100K worth of assets in my “estate”. In my case, this includes half the house that my partner lives in (and mostly pays for), as well as my 14-year-old pickup. More seriously the $85K whole life insurance policy that Michael is paying the premiums on is fair game.

Now, I don’t mean to be greedy, but Michael has been supporting me for 13 years. He is paying the life insurance premiums. It doesn’t seem fair for Medicaid to lay claim as the beneficiary. They haven’t even offered to pick up the cost of the premiums!

Our other option is to buy generic versions of the drugs, manufactured by Cipla Pharmaceutical in India, via an Internet pharmacy (probably one in Canada) for about $150 per month, less than 10% of the cost from an American pharmaceutical company. Pretty effing incredible, isn’t it?  I have seen the looks on faces of friends who live in more civilized countries when I try to explain this to them.

American health care workers typically respond to me by saying:  “but these drugs are not FDA approved”.  Like, do you think I’m impressed with that seal of approval?  Cipla is the largest manufacturer of ARVs in the world. Do you really think they would put their reputation at risk by producing inferior drugs?  And by the way, what has the FDA done to make me feel confident that I can trust them, anyway?

Besides, I kind of like the idea of supporting a country that recently decriminalized homosexuality and builds a decent car for $2,500.  That’s considerably less than two months worth of Atripla from Bristol-Meyers Squibb and Gilead Sciences. John Martin, CEO of Gilead, is the 10th highest paid pharma CEO, at $14.2M and thanks in no small part to Atripla sales, Gilead’s net income rose 10% in 2010 to $2.9B.

Heck, just writing about that is enough to twist my gut and make me sick.

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• AIDS drugs: A second opinion

Researchers are still studying light therapy after more than a century of medical use.

I first learned of ultraviolet blood irradiation (UBI) a few months ago from a mutual friend. UBI is also known as extracorporeal photopheresis (ECP) in the medical literature, and most recently BioPhotonic Therapy and Photoluminescent Therapy. Photopheresis been around for more than a century, and started gaining attention in medical circles as early as 1902. Like many promising alternative protocols, the spectacular success of antibiotics to fight battle field infections in WWII captured the hearts and minds of physicians and started the West’s love affair with pharmaceutical solutions to disease, at the expense of non-pharma options.

Today, as best as I can tell, UBI is approved by the FDA for only two purposes: cutaneous t-cell lymphoma and graft-vs-host disease. It’s use is far more widespread in Europe, Russia, China and South America for a variety of conditions, though it is currently being studied in the U.S. as an alternative treatment or adjunctive treatment for malignancies, auto-immune disorders, and yes, AIDS.

One of the earliest studies of UBI on patients with AIDS-related complex (ARC), published in Annals of Internal Medicine in 1990, reported some pretty amazing results, though the sample size was admittedly very small. Five sero-positive patients with ARC underwent monthly ECP for more than a year.

Measurements and Main Results: Symptoms resolved in four patients. Lymphadenopathy disappeared in all five. Four patients had delayed-hypersensitivity reactions to skin testing (as defined by the Walter Reed staging classification). All showed increases in p24 and gp120 antibody levels. The CD4-cell percentage increased in four patients and declined in one after 6 months of therapy, but the absolute CD4 count decreased in two patients. At 15 months, the CD4 percentage remained at or increased over the baseline value in three patients still in the study but decreased in one. Levels of Beta₂-microglobulin decreased or remained stable in four patients. All patients were culture positive for the human immunodeficiency virus (HIV) before treatment. One patient had a negative viral culture after 5 months of treatment with confirmation. Two other patients became HIV culture negative, one at 14 and one at 15 months: The former patient became positive at 15 months and the latter patient remained negative at 16 months.

Three of the five patients who underwent ECP actually sero-reverted from HIV-positive to HIV-negative, based on culture, not antibody reactivity tests or the so-called “viral load” tests commonly used today.  No wonder the authors concluded that ECP “deserves further evaluation”.

An extended study of 20 patients, conducted a few years later, was less promising, though I can’t help but wonder if it might not have been reported more positively had it been a new blockbuster pharmaceutical drug. I only have access to the abstracts, which severely limits my ability to evaluate the followup study. (NOTE: I’d welcome the chance to review the full report, if any readers have access to it.) I do not know how much blood was removed and irradiated in these patients, for example. It seems possible that the researchers were basically irradiating the patients’ entire blood supply, while today, only a small amount of blood is drawn and treated.

In any event, “a subjective improvement was noted in the majority of patients,” the authors wrote. And, “some decreases were noted in the CD4 cell counts but the decline may be less than is normally seen at corresponding stages of HIV infection.” No reports in the abstract of attempts to culture virus either before or after, but as I said, my access to the data is limited.

After that, research into UBI for AIDS patients seems to pretty much disappear from the medical literature, which seems odd, considering such promising preliminary results. There are currently only three trials of ECP for AIDS listed at clinicaltrials.gov, and two of those trials involve the use of “photosensitive drugs”; in other words, the emphasis is on some form of enhanced chemo, rather than the potential of ultraviolet irradiation alone.

I am sharing this important background information, at least in part, as defense against some of the criticism I’ve received for resorting to “woo-woo” alternative medicine. I want to make it clear that I try my darndest, as a lay person, to do some due diligence. I consider the evidence for UBI therapy to be as legitimate as that for many of the pharmaceutical treatments being prescribed today, and the safety profile for UBI/ECP blows ARVs out of the water. It isn’t that hard for me to suggest that putting one’s faith in ARVs might also be considered pretty “woo-woo”.

Another problem that I continue to encounter with alternative healing practices is that few healers seem to question the viral causation theory of AIDS. UBI, for example, is supposed to “kill pathogens”, including, presumably “HIV”. If, as some AIDS questioners suggest, HIV has not been isolated, or if it is not the pathogen that Robert Gallo claimed, then attempts to control it may be futile. On the other hand, proponents of ultraviolet light therapy also claim the treatment can stimulate the immune system, oxygenates tissue and promotes an anti-inflammatory response, among other things.

My personal approach to health the last several years has been to try to support my body’s innate ability to heal disease, not “fight” a virus. While I have not been successful in affecting the conventional laboratory markers, such as CD4+ counts, there is really no way for me to know, let alone quantify what positive and healing effects these alternative treatments may have had. I have been able to remain off of the pharmaceutical ARVs for more than 10 years, and I wonder if that would have been the case had I not tried some of these alternatives. ARVs are also prescribed as lifetime therapy, while at best I’ve “dabbled” with high dose intravenous vitamin C and UBI.

The version of UBI I’ve been trialing involves drawing about 30 cc of blood from a vein, diluting that blood with a few hundred ml sterile saline, adding a bit of heparin to prevent clotting, and then passing the blood through a chamber containing ultraviolet light bulbs before drippiing it back into my veins. I’ve undergone a total of at least two dozen such UBI treatments since the beginning of the year.

There is no such news to report. My numbers suck worse than ever, and that will be the topic of my next post.

Additional reading about UBI and ECP

• History of the machines
• 1902 article about Professor Niels R Finsen Finsen Medical Light Institute at Copenhagen (Digital History Project)
• More history of UBI
• Published studies

related posts:

• Denying the AIDStream
• Testing, testing… is that an OAT?
• The numbers game
• The other Big C
• Repeat a lie often enough and people will believe it*

This is a rewrite of a post I made almost two weeks ago.

After exchanging a series of emails, followed by a more than hour-long sincere telephone conversation with JTD yesterday afternoon, I am now convinced that the comments posted below were not made by him.

It is past time to end the caustic war of words between us. In that spirit I am deleting most references to JTD in this post. I repeat here what I told JTD privately: I’m sorry if I’ve caused him grief with his employer. No one should have their livelihood threatened for holding a different point of view.

I’m also very glad that we have now had a chance to personally discuss our differences, and am gratified that we could find so many areas of agreement and common ground. It makes he hopeful that some of us can find a way to build a bridge to overcome our mutual mistrusts and misunderstandings.  As one wise friend recently wrote to me: “pain and disease are the enemies, not each other. ”

In the interest of integrity and credibility, I am archiving a copy of the original post in .pdf form here.

-Jonathan

I have now received four comments from the same (probably spoofed) IP address in a couple of weeks. For the sake of posterity, I am posting them all here, as I have done in the past. They cannot be approved as legitimate commentary, only harassment, but they do reveal what those of us who publicly question AIDS are subjected to on a regular basis by some of the less stable (and anonymous) AIDS cheerleaders.

(screen shot from disqus dashboard here)

re: Confessions of a heretic dissident

Sad, Jonny. You really are a sickly one! Sadly, it seems you are well on your way to becoming this year’s Karri Stokely! Unfortunately, the Denialist turds will claim that you simply passed away from “stress” or some crap like that – or like Stokely, they will be silent. This sordid succession of bizarre and foul opportunistic infections clearly shows that “resistance” is actually “damaging.”

P.S. Are you going to allow them to use the veterinarian Al-Bayati to do a bullshit autopsy?

Kralc Rekab
clark@xxxxx.com

re: On my way to the forums…

Seems like in every post, Snout outargues Denialists and is more informed and educated than any of you.

Kralc Rekab
kralcrekab@xxxxx.org

re: When trolls attack: an open letter to “Dora”

How’s the Kaposi’s sarcoma treatment coming along? Do you think you’ll make it to see who the next president is?

Jasonstatham
jasonstatham@xxxxxx.net

re: When trolls attack: an open letter to “Dora”

Wow- looks like your blatherings might signify AIDS- related dementia. Have fun being patted on the back by such trash as Celia Farber. What a prestigious honor! Praise from fools such as yourself won’t help you. Medical science might. But all of you have so much psychiatric pathology that you are past the point of help. (e.g. Clarkie Baker.)

CeliaFarberific
celiafarberific@xxxxx.com

The IP address used for all four comments is 66.30.11.198, from a Comcast server in Cambridge, NJ, but that means little, considering how easy it is to spoof an IP address these days. It is listed on at least one DNS blacklist, so I’m probably not the only target of this troll.

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