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Alice Down the Rabbit Hole

| 22 Comments
After a three year hiatus from POZ magazine, I find it an honor and a pleasure to return with this blog--even though I am not the blogging type. I have only a vague idea of what Gawker or TMZ are, and have only just now (to create the link) actually visited either site. I own neither an iPhone or an iPad, and while I am thrilled to see oppressive governments in Tunisia and Egypt fall, I otherwise can't help thinking that Twitter (not to mention Manhunt and its ilk) have more or less polished off the last remaining remnants of person to person interaction--a phenomenon I both suffer from and bemoan almost daily. If I were to read a blog, it would probably be The Huffington Post, Andrew Sullivan, Slate, or Salon dot com. But then this probably only betrays how irretrievably mired in the past I am. How unhip.

I keep wanting to remove my Facebook profile entirely but then realize that it is an admittedly time effective way to keep up with friends' goings on--even if mostly with friends (or high school and university peers) you wouldn't particularly care to keep up with anyway! Perhaps not a total Luddite, I do feel more comfortable in the pre-internet age, the slowness and deliberateness of printed media. And the anticipation of what is to come.

My disillusionment with the direction of HIV research and, well yes, activism and advocacy, slowly snuffed out, from about 2002 to 2008, whatever fire of expectation even hope I had for fewer drugs and maybe even a cure. The people who seemed the smartest and most mindful of the interests of patients and well-being were the ones, at least from my perspective, who found themselves wholly without a platform from which to speak--marginalized if not silenced by the group think single mindedness of academic doctors for hire and for-profit medical (and patient) education.

And so I find myself seeking refuge in the world of Oriental medicine. It's very un-P.C. to call it that, I realize; Traditional Chinese Medicine is the preferred moniker but manages to raise the shackles of the Koreans and Japanese if not the Tibetans, Taiwanese and who knows else. So I still haven't found the all encompassing, non-offensive label for what might also be referred to, without the vestiges of colonialist ambitions, Asian medicine. Call it what you like.

I am now nearly eighteen months into my immersion in this medicine. Like many before me, I was initially attracted by the acupuncture and have since been won over by the power, complexity and possibility for individualization of the herbal formulas. Recently after arriving in California, I learned of a friend, HIV positive for many years, who had indefinitely delayed initiating antiretroviral therapy via regular weekly and biweekly visits to his L.Ac. in Santa Monica. Then after my first six months or so of the (four year) program here in Los Angeles' Koreatown, I learned that two of the herbs in a common formula for the moodiness and irritability associated with P.M.S. (Xiao Yao San) had an effect against Human Papilloma Virus. Then just a few weeks ago, a professor in one of my formulas classes mentioned that a common qi tonic, Si Jun Zi Tang, the so called "Four Gentlemen's Decoction," produced (CD4) T-cell rises in his HIV positive patients--and that apparently there is research to document this effect of the formula but none that I have yet been able to find. Where was this information, I wondered, when another friend and I (and his super smart MD) watched on in dismay as his Truvada-Kaletra therapy brought his viral load to virtually nothing within a couple of months but his T-cells struggled to pull themselves out of PCP prophylaxis range for all of two years? Might this Traditional Chinese Medicine formula--from a book (Tai Ping Sheng Hui Fang or The Great Peace Sagacious Benevolence Formulary) of over 16,000 Chinese herbal formulas written over 1,000 years ago--have solved (or even helped) the gut-wrenching phenomenon of the so called immunological non-responder or viral disconnect? Now I want to know.

Yet another classic TCM formula, Gui Pi Tang ("Restore the Spleen Decoction"), commonly used to treat certain patterns of insomnia and feelings of being overwhelmed and stressed out from life or work, because it is essentially Si Jun Zi Tang with some additional herbs added to address over worrying and anxiety, might presumably (if the T-cell boost claim of "Four Gentlemen" is real) help boost T-cell counts and help one sleep more soundly at night--and to cope with the world during the day! While I am not suggesting that the ARVs could be put back in the medicine cabinet, the Lexapro (or Cymbalta), Xanax (or Klonapin) and Ambien (or Lunesta) might be! So much to follow up on.

But as I dig deeper into my studies I find, at least so far, a real dearth of research into, well, anything generally but more specifically anything along the lines of sexual wellness: HIV, hepatitis, herpes, HPV. I am hoping I just haven't looked in the right places yet, and in many ways this latent hope is what prompted me to suggest this blog to the editors and publishers of POZ. Short of Ruth (aka Misha) Cohen's Quan Yin Healing Arts Center and an HCV research paper here or there, there really doesn't seem to be much going on (or even interest?) in the exploration of these herbal medicines for the treatment of these viral infections. If anyone even finds his or her way to this blog, please take a moment to tell me how wrong I am and who's doing (or has done) what and where I can find it! In the meantime, I will follow up on the tidbits I mentioned above--and see what else of interest to POZ readers I can find. Thanks for having me.

22 Comments

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Comments on Mike Barr's blog entry "Alice Down the Rabbit Hole"

Mike, PLEASE KEEP WRITING ABOUT THIS!!!!!!! I do not know a lot about this eastern medicine thing but I do know I have a lack of huge trust for big pharma and am more open to eastern medicine. My tcell count is at 246 and my dr mentioned that I need to start thinking about what I want to do. I did speak to him about eastern medicine and there was no way Jose I was going back to taking the cocktails. Luckily he is open enough to explore and knows a little about eastern medicine to help me along and make informed choices. I know there are others who want to explore non toxic medicines so PLEASE(!!!!!) keep up on writing about this and keeping me informed. If for some reason poz.com wont let you write about this topic anymore copy my email and let me know where to find your future writings.

A cursory glance at what Xiao Yao San is allegedly good at treating should tell you why there is a dearth of research. Absence of evidencea are hard to publish in peer-reviewed journal ...

Blood weakness; exhaustion; irritating heat in the heart, palms, and soles; whole body pain; dizziness; heaviness of the heat; being easily startled, dryness of the mouth and throat; night sweats; poor appetite; excessive sleeping; blood and heat in conflict; irregular menses; umbilical swelling and pain; malaria-like fever and chills; uterine blood weakness; yin weakness; disharmony of wei and ying qi; cough with sputum; high fever; emaciation.

and

Hepatitis, pleurisy, chronic gastritis, peptic ulcer, anemia, functional uterine bleeding, menopausal syndrome, pelvic inflammatory disease, fibrocystic breasts, neurasthenia, optic nerve atrophy, and central retinitis.

Mike, I am so delighted to see you blogging here and I look forward to reading your posts. Over the years, I have heard from scores of people with HIV who have had excellent experiences with Eastern medicine. I am interested in learning more.

For several years I was able to get acupuncture and herbal medicines provided by a grant to my local AIDS Services Organization. My health, sleeping patterns, gastric acid reflux disease, and CD4 count radically improved. However, the funding for this complimentary and alternative medicine program dried up and it has been many years since I have been able to access Traditional Asian Medicine. What are those of us on fixed incomes to do? Acupuncture, etc. are not cheap, if you are paying out of pocket.

I would be very interested in more talk of Eastern Medicine and other informative messages you have to provide. My numbers are great, but my body says different. I have deffinately noticed a difference in the last ten years of being healthy, mostly the night sweats and mood swings.

From sick 3 -5 times a year (bacterial problems - antibiotic) I, since starting on 6grm of Coriolus Versicolor (turkey tail, is a mushroom), reached the third without being sick, in fact I was sick in December, bronquitis, and I managed, for the fist time in all my life, to overcome the infection with no antibiotics, just a expectorant (and when I toke it, soo many expectoration went out.. I was really attack, impressive for me this power display of my system) so from a minimum 3 times sick a year I went to zero tree years in a row and finally became ill, some paracetamol and in 2 week i was ok. I remember two times to try to do this in the pass, frustrated because the other people didn’t need antiB like me, and I managed to get two shoots of penicillin…
This was a problem I had al my life, I do not have aids, for the record I am positive, 33 years old Caucasian male, my cd4 are 800-1000 no viral detectable and i find out of my status (hiv and hepC +) 2 years after infection and started on meds right away, that was 13 years ago.
Another think that boost my energy, but a giant boost was vitamin d3... as the coriolus i started just because was amazing what i learned about it, in the long term, and i was surprise by a visible effect, not only the long term benefits. Vit D3 is absolutely fundamental, i as everybody don´t get enough sun, and being in a viral battle 24/7 depleted me so much... so much.. i could not read more than an hour before I fall asleep, and when I woke up. I was so lethargic that my day was over… 4 days in 1000UI of d3 i started feed a stamina, strange energy, well, tree week later I bought my first glasses, I was able to read for hours, keep the interest and concentration.
Finally for my depression, this one made me reborn!! 2 or 3 months after finding D3 I got another tip, 5htp + complex B and magnesium... once again, 3 - 4 days, and i... reborn, I really can find words! The happiest days of my life, first with D3, that with 5hpt (serotonin precursor). Now I am trying to repair my life, essential my social life, which I let die with my depression.
I also take omega3, o good protein, calcium (because vitd3, very important), lithium oratate (doesn´t have nothing to do with the lithium for bi-polar, check these tips on the web).
I also had a sexual appetite problem and a sexual dysfunction, maybe because of antidepressants, or something… I could reach a full erection, so i started to take extract of tongkat ali... boy, another bingo, my hormones can stand to see a woman now... hehehe really pure true…
After years of docs, meds... i had to find, for my own, the solution for my problems, i wonder if a had not hiv...
So this is my experience, i have a very good source of tips, thanks to the net, (there are a lot of garbage out there too...) but, it´s unbelievable how can we live in a world where there is a massive deficiency in vit D, vit D is so importante, some start to suspect it´s a hormone, it activates more than 200 genes, many also say, and I live it and believe this: if the vitaminD was patentable, would be the most famous drug in the world. Now think about this, the COriolus the vit D3 (Sun, it´s sun we are talking about, so important as water almost, it´s nature, we born with no clothes) all these had those effects i could feel and improved my life, in fact I have a new life!! I am making changes in my life I never have ever dream of having the strength to do (because of my depress)…. so i can only imagine the effects in the long run, for example, if i do not knew i became ill 3 to 5 times a year, i did not knew the the enormous effect Coriolus had on me... so the question is do not be sick, not to cure, is to not became sick at all, that is why we don´t know nothing about D3, a study showed that it can reduce cancer chances by 70%, the big pharma panic!! because it´s nº1 business, in fact there this awake about D3. Everybody is talking about it, it´s because a situation created by a panel of experts in osteoporosis, they sad people should not take more than 400UI (the vitD3 is fundamental to fix calcium), the next day people started to call the doc´s (those selling health) because they had put then on 5000UI, a toxic dose according the panel (naked in the summer, 5 min you get 10000UI), well the controversial was such, that the panel was discovered to have 2 doc directly related to osteoporosis meds, and the truth about the benefits of d3 was out!! They’re greed opened the Pandora box… thanks god…

Western medicine has already discovered a way to dramatically boost CD4 counts by stimulating
CD4 production in the bones. The problem with it is, that this did not show a correlation to reduced HIV related complications. Scientists are unsure why, but suspect it is because the existing CD4 cells in an HIV-positive body are reproducing themselves, and not the broad spectrum of CD4 types that had been destroyed by HIV. My doctor gave me the option of going on this med, but I accepted his recommendation against it, for lack of its demonstrable benefits. I'm back to what you refer to in your blog -- PCP prophylactics for a long long time, until my CD4 percentage climbs out of the danger zone.

I'm a great believer in complementary medicine, but it has to be evidence based, and vetted from incomplete evidence like the kind you have quoted. Increasing CD4 counts is not enough.

The one time I tried TCM, which was for thinning hair, I found it time consuming, expensive, and ultimately fruitless. While each concoction is cheap and affordable, the clinicians proceed through trial and error, trying concoction after concotion after concoction, with no end in sight. The clinicians also sell you the herbs they are prescribing, so there is a conflict of interest there. And the end result, in my case, was that it was an expensive and draining, waste of time.

Thanks. Keep writing!
It is welcome news that anything can help alleviate the terrible side effects of HAART. Those of us on fixed incomes however, may not be able to afford what you recommend.

Sangamo in Richmond CA is working on a functional cure.
Their website is:
http://www.sangamo.com/tech/tech.html

Hopefully they will bring this treatment to market soon. It is based on the cure of Tim Brown in Germany three years ago. Dr. Gero Hutter cured him of HIV/AIDS and Leukemia by using a stem cell transplant from an elite non-progressor with the Delta CCR5 mutation.
Max Hurst

In 2006 a company by the name of Ceragenix anounced it had discovered a group of compounds that would cure HIV, along with many other infection hard to cure, like the killer staff MRSA. The family of compounds were Ceragenins. (http://csa54.info/ceragenix-pharmaceuticals/article1.html)
It even made it to a news report. Shortly there after, they applied for funding from the FDA for research the potential of these compounds. They got no funding. The ceragenins would cure problem with dermatitis and was later sold a "Epiceram" . Due to no funding another privately held company came in and purchases the rights for HIV applications. Now that there is no longer a ceragenix company and no site to research what happened, I can't help but think these ceragenins are being hidden from any further development so that the pharmacutical companies who thrive off maintaining our disease can continue to make even more money. There is no future money in a cure.

Also, recently there was the article published in POZ about the stem cell thereapy that cured HIV in the man in Germany who was treated primarily for leukemia. It is a cure but is not being used because it would wipe out the money the pharm. make from selling drugs. This is the evil of "for profit medicine" The people of the world should be rising up against this terrible evil and also demand the WHO make it mandatory that stem cell thereapy be used on every HIV person in the world. No exceptions! Thank you.

I enjoyed reading your blog and hope that you and I and all of us can learn more about eastern medicine and HIV, HBV, HCV, etc.
I have just started on ART's two weeks ago, but also do a slew of supplements suggested by Life Extension Network, and also have been doing high pH enema therapy for over a year (heart, and now HIV/HCV) to keep my pH level above 6.5 so my body has an easier time of fighting off infections. I would be interested in others experiences along these lines.
Big Pharma is NOT our friend, alas. Nor is the US govt. or the FDA! It often feels like we are fighting a huge uphill battle, and I am sure that can easily drag us down. We need to be lifted up to thrive!
Please keep up the blogging and give alternate therapies a voice!
Thanks,
Rod

Mike,
Just stumbled upon your most excellent Blog. How refreshing. I share many of your pre-internet feelings, but when I'm able to read and learn of your similar thoughts regarding Asian Medicine, I'm grateful. I've been cruising around Chinatown in SF, and Oakland, trying to learn something from the sellers and practioners in regard to hiv. It has not been an easy path. So, please keep writing of your own discouveries as it really helps, and propels others. I too, have been less optimistic about reducing the daily ingestion of modern science experimentation. Grateful as I am to be here, I know other therapies have made that journey possible. Please keep lighting the path, and many thanks.
-DaveW

As I got past the picture of the cute blogger, with the impossible title "traditional chinese medicine and hiv/aids", I was happily surprised to read real relevant info, written with humor and wit, which made me dash to Chinatown here in NYC looking for the herbs... but I couldn't find Si Jun Zi Tang! Is it easy to find? Maybe the Chinese sales guy didn't understand what I was saying? Should I write it down on a piece of paper next time? Anyway, please keep giving us more on this subject! I love this blog!!
MZ

Recently someone suggested trying astragalus and maitake mushrooms, and so I have been doing so for the past 2 months. I go for my lab work in a couple of weeks and am curious to see where my numbers are. If you have any thoughts on these supplements I would be grateful for your input!

I have been HIV+ for almost 25 years. I began my journey during the monotherapy days of the late 80's. All there was for me, a man with no insurance, was alternative medicines. I hooked up with DAAIR in New York City, and learned how to control HIV with nutrients and antioxidants. Within a few years, I was off to California for Chinese medicine school. I began incorporating Chinese herbs and acupuncture to my protocol. I stayed pretty healthy for many years, despite the stresses of school. I had a wonderful practitioner from Quan Yin to mentor me and advise me with my supplement routines and herbal therapy. Once I became competent with Chinese herbs, I learned how to prescribe for myself. By 2002, I was back in New York and a colleague of mine and I struggled for 4 years to create a Chinese herbal formula to fight HIV at it's source, deep in the body's energetics.

We tested the formula on many volunteers, bless them, and finally settled on a combination in 2006. The purpose of the formula came out of the need to help people going on drug holidays from the first round of HIV meds. So many got drug sick from the Ritonavirs and such, we wanted to create something to help these people not to slide back into AIDS, until they were ready to go back on meds, or new meds had been issued. But a subset of our volunteers had never been on HIV meds before, and were using it as a first line defense, along with supplements and nutrients as the second line, to suppress HIV. Our formula has had varying success, but usually helps. There is just the scantiest data we were able to collect on this, so I can't prove on paper what this formula has done. I for one, 24 3/4 years HIV+, have only just this week changed over to a triple combination. I was able to avoid all the difficult drugs, and now can feel very comfortable with my modern combination that will not send me into disability. I run a busy acupuncture and herbal practice, and also teach at a local Chinese medicine school. I want to keep it that way, and I am grateful for all the activists and reseachers who enriched my life, but I also have to thank myself and my colleague for creating a viable solution to HIV meds using safe, very safe, herbs.

Please keep this going. I would love to learn more about chinese medicine and herbs. I am very interested as I do tons of Holistic stuff and it seems to work on me..keep it coming..please

lilyrose:)

It is so hard to keep alternative treatments in a world of for-profit healthcare. After almost 4 years on a non-ARV treatment influenced by chinese medicine I was in good health. I wish I knew where are the good Chinese doctors in the US and the world before initiating the ARV therapy. We need to know this resources and let more people know.
In the long-term i see it is better to go on the alternative therapies than just taking a pill a day with all the side effects to your body.
I am sure we can get to a non-toxic combination therapy, customizable to the several types of people suffering the HIV infection. Thank you for writing about this.

Regarding your comment referencing Ceragenix, you are correct the ceragenins were purchased out of Ceragenix's bankruptcy by N8 Medical (N8Medical.com) and they are actively pursuing the various ceragenin compounds. Mention has been made about the potential of an HIV application and the Company is excited about those prospects. However, as you noted, Ceragenix did not receive funding for research and N8 is stymied by similar lack of funding. The cost of development is staggering and requires funding from public sources besides private investment. You might want to look at their website and if you have any suggestions contact them.

WoW thanks for sharing your information on d3 and all the great things you r taking.
Charles

Si Jun Zi Tang is not usually found as a common commercial patent (pill) formulation. There are many other patent formulas that have developed from the original formula, and those are sold. And it's true, you probably don't know how to pronounce the name in Mandarin or Cantonese, so of course you were not understood.

Stepping into the world of Chinese medicine is not so simple. Working with a practitioner who is an herbologist is important, as they have the knowledge and access to formulas. Even though herbs are free to be bought on the market, it is best to get a trained practitioner to prescribe for you. Many acupuncturists in New York State are not trained as herbologists; some are. New York does not require that to get a license to practice acupuncture, one has to know Chinese herbology.

Get yourself to an acupuncturist who does herbs, and he or she can help you. Just ask around, Chinese medicine is getting more and more popular, you will be surprised how many people have gone for acupuncture.

I myself am a licensed acupuncturist and certified Chinese herbologist, but am not interested in promoting myself on this blog for business interest, but for helping positive people learn more about how Chinese medicine can help them in their healing journey.

If you look at my post below — Mark — you can learn about my journey and about a specific herbal formula to aid PWHIV in their fight against AIDS/HIV.

Since '07, started eating dried goji berries. Blender with blueberries, yogart and fiber one. Read up on goji berries...the whole, red dried berry rather than the diluted so-called juices out there, because you can puree and make own much cheaper. My labs were so bad in '06, MRSA infections, the Hep B the USAF gave me via blood transfusion '84, neurological symptoms the precursor for neuropathies and this is all before having to start meds. genotyping showed resistance to everything with at that time, the new drug Atripla my only choice with a few classes totally not an option. My Dr. is major researcher and M.D. and agreed the Eastern Medicine had to have everything to do with bringing my labs to where they are today; same labs pretty muc since '08 when viral load undetectable, CD4 1100-1500 any given day...the goji has MANY things to help us on celluar repair and immunity and anti-free radicals on the nuclear scale! Now, I still have neuropathy, see a G.I. Dr, regualrly because HIV has made IBS and IBD worse, and some great days and others full of malaise, and anxieties. BUT, coupled with Atripla, I nor my Dr. can rule out that the goji berries are hurting anything. Others I know have started using 1/4 cup a day of them and have had great results but because the FDA has to snction something as being ordained by their queen of greed as beneficial to one's health, BEFORE any Dr. can recommend such treatments because they are NOT regulated by the FDA. Study and let knowledge set you free...

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This page contains a single entry by Mike Barr published on February 12, 2011 10:31 PM.

The Invisible Medicine for Unquantifiable Maladies is the next entry in this blog.

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