Miraculous Intravenous Infusion Therapy
This article started life as an email reply to a correspondent who, desperate to be normal again, was considering spending large amounts of money on a treatment that it was claimed, would relieve him of pain and halt the progression of his Arachnoiditis. To my great dismay I discovered that the person offering this therapeutic intervention was none other than my old friend Antonio Aldrete. Antonio wrote the first book on Arachnoiditis and presented me with a signed copy many years ago, I had a very high regard for him. Much of that has now evaporated because it seems that he is currently trying to cash in on his reputation. I hate the fact that I had to write this but there is no way that I could sit back whilst people with this awful disease are ripped off. The quoted figure for the treatment was $30,000!
To be absolutely clear, whilst I wish otherwise, there is currently no medication or combination of medications that can eliminate the symptoms of Arachnoiditis completely, neither is there a proven treatment or surgery that can halt the progression of the disease. We know that the disease runs a different route in many sufferers, with some condemned to a continuing slide into great pain and disability whilst others reach a symptomatic stability that is maintained sometimes permanently, sometimes for many years.
These differences open a door for the unscrupulous to abuse to enrich themselves by claiming that they are responsible for a person's stability after they have treated them or put them through a "protocol". Those who don't apparently respond to their therapies are, "the very few", who cannot be helped. With their clientele being drawn from various locations thousands of miles apart, in some cases, the possibility that they will communicate with each other after being treated is small. The embarrassment of being duped ensures silence in many instances, further lessening the chances that the deception will be unveiled.
So why do we fall for such scams, and, are we specifically targeted? The answer to the first question is pretty obvious and in it lies the answer to the second. We don't actually "fall" for scams, we all have Arachnoiditis and all want to get rid of it. We want an end to the sideways glances when we tell people what is wrong with us. We wish for the days when we just got up and went to work like normal folks, when we could play with the kids or grandkids. We yearn for the days when our earning power was more than the poverty level benefits that we struggle to live on today. We desire an end to grief, because, to some extent we are all mourning the person we once were and hate the person we have now become.
When somebody comes along who seems to have stellar medical qualifications together with a good reputation, we tend to take note. When that person then tells us that he/she can erase or substantially ease our pain with its escorting symptoms they have our attention. When they go on to state that they will also halt the advance of our Arachnoiditis, they have us hooked and, for some of us with the resources, no matter what the cost we will chase the dream they are claiming is reality. They know that, they know it as much as they know all the factors in the paragraph above. The terrible disgrace is that they are willing to take advantage of our woes in order to earn some filthy lucre they are willing to cancel out their former reputation. To ere is only human but to deliberately deceive those less able to resist simply to fill your own desire for a healthy bank balance is disgusting.
Here then is the revised text of that email with additional paragraphs. Obviously I have had to revise the original to exclude any references that would identify the recipient and whilst doing so I have also included some additional information. If anybody would like to read the articles that I refer to below, I will be more than happy to supply them. Just be aware that they are technical publications and you will have to put in some work yourselves in order to understand all that they describe.
I spent the majority of my time this morning investigating this and I have several extremely serious concerns. Firstly Dr Aldrete gives no indication whatsoever about what pharmacological solutions he is proposing to infuse. This is completely at odds with recognised medical practice with regards to the patient's Informed Consent rights to be told:
- What medications the physician is proposing to use.
- Why he is using them, i.e. what does he expect them to do and how they work.
- What are the risks of the treatment and methodology
- What benefits he expects them to produce for the patient.
The patient should always be provided with this information before committing to undergo any medical procedure, let alone one that will involve significant cost and that they have to travel significant distances to access. The patient's right to make an informed decision is otherwise negated. The extra emphasis Dr Aldrete places on the urgency of having he treatment in order to halt the progression of Arachnoiditis in his final paragraph to one prospective patient smacks of scare tactics, as if he is trying too hard to persuade, or frighten his potential pay day into parting with funds in his direction.
Secondly, the fourteen papers I read before writing this article, that described infusions for chronic pain concentrated mainly on Ketamine, Lidocaine or Sodium Amobarbital, alone or in combination. For the treatment of Neuropathic Pain they were all in accord, concluding that none of them produced significant pain relief for any extended length of time. The longest period of pain relief reported by research subjects was 47 days. There are probably further papers describing infusions of other substances for pain relief, but, I would have to spend a significantly longer period of time to find them and I don't expect that they will produce any better results. However, I will undertake this added research as soon as time allows.
My logic in reaching this conclusion is that if there was a medically proven infusion treatment that produced significant pain relief over an extended period of time then most health systems around the world would be using it. Low back pain and neuropathic pain are hugely costly condition. In almost all developed countries, some 20% of workers report to their doctors with such painful conditions every year, therefore it would be illogical for such a treatment to be ignored by mainstream medical authorities such as the National Health Service in the UK. Given our desperation to be pain free I also believe that patient pressure groups would also lobby there political representatives to ensure that they did so. I for one would be at the head of the queue of patients demanding it if I believed for one Nano-second that it would help me!
Thirdly, and probably most disturbing, is Dr Aldrete's claims that his infusion solutions (whatever they might be) can halt Arachnoiditis in its developmental tracks, without producing any evidence to support them. There are no randomised studies or series of case reports describing successful treatments, this I find very damning as most medical professionals who make a huge breakthrough in treating a previously unstoppable entity would normally launch into print asap. Being first past the post in the medical profession is hugely sought after and raises the prestige of the individual making such discoveries to God like levels. Obviously there are also financial benefits in abundance as the new treatment is patented and marketed by one of the Big Pharma companies.
So far there have been many attempts by Neurologists world-wide to find a solution to the problem of easing neuropathic pain permanently, without any proven, positive results. I am also pretty sure that many have also tried to halt the progression of Arachnoiditis without any lasting success. There are hints in the literature that Bone Marrow Stem Cells could possibly be of benefit, but, that research remains at the level of animal testing and cannot be confirmed. There was also some promising research on Chondrotinase ABC, also in animal models, on the possible use of it to repair damage to the spinal cord, but that is concerned with physical damage caused by trauma, not in disease processes such as Arachnoiditis.
I would be very interested to have Dr Aldrete produce documentary evidence that his unknown infusion therapy actually works. More importantly I would need to know how it does so and what risks a patient would be incurring if he subjected himself to it. All of that before I even broached the vexed question of how much it costs, but I doubt that it would not be extremely expensive, it is miraculous after all! The final question I would demand that he answers is, if he has this miracle substance that halts the progress of a disease that we know is much more widespread worldwide than medical authorities will admit, why isn't he patenting it and selling it to them for the millions of dollars such a treatment would be worth?
Over the past 12 years I have encountered many con-men preying on fragile, pain-wracked, arachnoiditis patients. Offering to provide them with what can only be termed as quack remedies or highly questionable surgical procedures that they claim will either rid the patient of arachnoiditis altogether or halt its progress. All were very costly, none of them were verifiable by scientific means and most were backed only by endorsements written by previous victims of such cons. Hardly convincing evidence of their efficacy.
One example was a herbalist who claimed that he could eradicate Myodil/Pantopaque from the spinal cord by the patient's consumption of his own recipe of toxic herbs. The one endorsement was provided by a lady who is no longer with us, her liver having been destroyed.
A certain Dr Holsworth was flogging Natto, a product of fermented Soya Beans, as part of his cure all Protocol. Again nobody is really sure about how he was treating people or what he was treating them with, just that they paid a large amount of dosh and went away happy. He couldn't legally call his protocol a treatment because the FDA had already warned him four times about doing so and would have jailed him if he did so. There were, and presumably still are, some misguided ladies following this "protocol" which is costing them a small fortune. However, they are not half as loud in their protestations of benefits as they were previously.
At the time I did a lot of research into the substance, Natto, together with the supposed benefits of soya, but found no medical evidence to support the claims that Dr Holsworth was making for it. Just to give you some idea of the effort involved, I amassed over 120 PDF files comprised of medical journal articles and other papers.
I could go on but basically these things are created by unscrupulous people who know how desperate sufferers in chronic pain are to experience just one day when they can wake up and be normal again.
On second thoughts I would briefly like to add a short paragraph about minimally invasive surgeries that are now being offered in the US and, I believe, Germany. Once again the literature described procedures carried out on 23 patients in Germany who had there Arachnoidal formations removed and were pain free post operatively. This was back in 2007 but there was no follow up paper to be found, oddly enough the same applies to procedures offered in the US. The perceived medical wisdom has for years been that if you surgically remove such formations the procedure itself causes scarring, no matter how careful you might be and the formations return at a later date, sometimes larger and causing more disturbance and pain than pre-operatively.
None of this is good news and will wreck some hopes and dreams, but, we cannot live in the clouds. The disease we have fallen prey to is under researched, because of denial within the medical profession as a direct result of its iatrogenic causes. It is therefore, right now, incurable and nobody has discovered a bona fide way of repairing the damage it does and halting its progress.
The only people in this world who can ensure that such research is undertaken and the procedures that cause Arachnoiditis are stopped are we few, we the sufferers (God I hate that word). Only we, by banding together, bonding together in a tight teamwork formation, ready to plan and carry out campaigns to publicise our plight, make the general public aware of the risk that they too could one day join our ranks, lobby our political representatives in order to get them on-board.
If we decide that we cannot do this, that we have not got the physical strength to do this, that we cannot be bothered to put ourselves out to do this, then this suffering will never end and new candidates to join our ranks will be created by medical procedures on a daily basis. More people who will wander in confusion for years before straying into the information that the medical profession withholds.
I am open to any suggestions. I don't need or necessarily need to be at the centre of things In fact after 12 years it might be time for me to step backward and simply provide the research whilst others campaign. I don't have a problem with that, I do have a problem with being the last. Please don't allow that to come to pass.
To return to the original subject of this article. If it should transpire that Dr Aldrete actually provides all the information that is currently missing regarding:
- what he is intending to infuse into patients,
- the risks and benefits of the substances,
- records of randomised controlled trials and other medical journal articles that are peer reviewed by specialists in pain relief and neurology that confirm his claims that:
- his infusions not only relieve neuropathic pain, but also halts the progress of Arachnoiditis,
then I will take it all back and apologise, very publicly and with humility.
All of this is very difficult for me because I personally interviewed him for a video that was made way back in 2003/4 and found him to be a very supportive physician. A physician who was doing his best to reveal the dangers of Arachnoiditis and the cover up that has buried it in the basement of medical practice because it was and still is caused by medical procedures. I liked the man. He supported me through a very difficult episode of my life when I was trying to get a diagnosis. But, I cannot, in all good faith support him on this occasion and am appalled at what he is now involved in.
It is an appalling fact that where misery is found there will be shysters willing and able to take advantage of that misery to enrich themselves, this is especially true in the case of medicine where snake oil producers have milked the desperate for centuries. If you should be approached by anybody who offers you a cure for Arachnoiditis or claims to be able to alleviate all your symptoms, be very suspicious indeed. Such people will try to separate you from other sufferers by various means, usually linked to a need for secrecy for one spurious reason or another. Don't let that happen, the other members of your support group are your main coat of armour against such perfidy, they will help you to check out the credentials of the person offering the elixir.
Any and all claims for treatments or therapies have to be viewed with initial suspicion and thoroughly checked. Simple letters from others claiming to have been cured are not enough to sustain credibility what is required are bona fide medical journal articles describing the therapy on offer, its theoretical basis and the results of trials that prove its efficacy. If nothing can be found in the medical literature then the chances are that it is bogus. There are websites where you can volunteer to become a subject in a trial of new treatments and all such trials are recorded on government websites run, for example, by the FDA in the US or the NICE in the UK, so they can be checked for authenticity.
We are all desperate souls to some extent because we are humans and the fear we feel having been diagnosed with a progressive, incurable disease, is natural. The best way to cope with that desperation and fear is to educate ourselves about our disease, not just on support websites but using the wealth of information on medical websites that abound these days. Get to know the anatomy of your own body and the changes that Arachnoiditis wreaks upon it. Learn about the course of the disease and what treatment options are currently available. Also ensure that you know the full risks and benefits of those treatments. Keep yourself up to date with developments in medicine by returning to you original search terms at regular intervals. By doing this you will be lessening the chances that some bogus medical practitioner will hook you into believing that they own the Holy Grail, or that a qualified physician with less scruples than they should have will persuade you they can perform miracles and cure your ailment. Let knowledge and friendship be your armour.