Mainstream medicine about killed my mate – not due to any one act of intention – but due to blind ignorance, arrogance, incompetence (willful, perhaps) and neglect – which to me is almost as criminal.
We met in the late 90’s and at the time he was having some health issues that were related to the joints in his wrists. Numerous tests showed deterioration of tissue and cartilage and chalked up to work environment. He was only in his 30’s at the time so the doctor’s couldn’t throw in the “it’s your age” excuse they offer up to pacify you once you get into your 40’s and 50’s. Surgery would have helped – some – but it would have also reduced mobility quite a bit so he decided to just live with it.
In time he began to have inflammatory issues in his g.i. tract. This time it was advised he have surgery, which he did. Fixed the problem. For a time.
However, he then began having issues in one of his knees. Torn meniscus, in which surgery was recommended. (Noticing a theme here yet?) He had the surgery.
Within two years, he began having pain all over his body. His joints ached. His back began to hurt. His spine. His neck. Fatigue and exhaustion set in. In short, it was like having a chronic flu that he couldn’t shake. At first the doctor suspected Lyme Disease, which in the end turned out to be an accurate diagnosis. Made sense given where he grew up and the number of tic bites he had experienced. Unfortunately the standard Lyme Disease Blood Test the CDC issues (which mainstream medical docs use) is highly inaccurate and showed a “negative” result. If only the doctor had followed his intuition with the proper testing and treatment, he would have saved my spouse years of suffering.
The new diagnosis?
Fibromyalgia, which is just another way of saying the patient is inflamed all over without a known cause. He was given prescription drugs to treat the pain and the accompanying depression. The pills for the pain didn’t work and the anti-depressant’s made him feel “strange”. You will just have to live with it, he was told.
It was at that point I began to ask myself what was really going on. What was the underlying issue causing these health issues in an otherwise healthy, young male. He was very active. He ate well. Lean. He otherwise had always had a huge amount of energy. Unfortunately I was still putting trust in the medical system as was my mate.
A program of yoga and simple mental fortitude put my mate’s health back to a level where he could function fairly normally. He just got used to being in pain all of the time. He’s amazing in this way.
However, as the years went on, he continued to have more health problems – all of them related to inflammatory issues. He had two more surgeries, one which was completely unsuccessful and the other was to repair more torn meniscus tissue only to be told he would next have to have total knee replacement surgery in time. We later learned it is better for many to live with a torn meniscus than to continue getting it repaired for the “repair” part is really an illusion. They just slowly remove it/shave it off until you are bone-on-bone and either live with that pain, wear a brace (of which my mate does) or get the knee replacement surgery, which unless you have awesome private insurance, you will be given the crappier version that may last you 10 years – if you’re lucky.
Fast forward to 4 years ago. He began losing weight and height. He had already last almost 2 inches, all due to, again, degenerative issues of unknown origin, although the “age” factor began being used. And, most noticeably, he began having intense pain in his front, lower left abdominal area. He had already had numerous colonoscopies over the years, all of which just showed signs of constipation and inflammation. The doctor he saw wanted to scope him throughout his entire gastro body – top to bottom. He agreed. The results? Chronic inflammation throughout of no known cause.
“Go gluten-free and within 6 weeks you should feel like a new person,” the doctor advised. Which he did. With no results.
His health was deteriorating quickly. We didn’t know what to do. The medical system was only willing to diagnosis him with chronic inflammation, fibro and degenerative issues of unknown reason. My mate however knew intuitively they were missing something. I agreed.
Several weeks after this latest “diagnosis”, his health still deteriorating, we met a woman who immediately knew what he had – Lyme Disease. Why? She had had it herself and the symptoms were almost identical to my spouses. “But he was already tested for Lyme,” we said. She asked what test – we told her – and she informed us there was more accurate, sensitive testing through Igenix Lab, the test known as the Western Blot. She pointed us to a local lyme literate doctor (a phrase we would come to hear a lot in the upcoming months). Appointment was made. Test was done. Bingo. Positive for Lyme.
Antibiotics were ordered. Pill form. They were working – slowly – although causing a host of g.i. problems, further exacerbating his already inflamed system. We were able to raise money for get him on intramuscular injectable antibiotics, which allowed him to gain 20 lbs within 6 weeks – a first – and was giving him back his energy. However, he seemed to be developing an allergic reaction so the doctor returned him to pill form, where more allergic sensitivity was indicated.
Off the antibiotics and onto alternative treatments.
Without going into further detail, that’s where he is today – on a chinese proprietary formula. Is it helping? Who knows. He feels like crap when he’s on it and crap when he’s off of it. Other than taking another expensive blood test to see if there is still lyme present, there’s no way to really know for sure. All we know is that treating lyme at a late stage is hugely challenging and is often a “try this, try that” approach.
As for the medical system, we informed them of his diagnosis, where it was dismissed. They further went on and labeled him as abusing the system and being mentally ill. Far too common among people with late stage lyme who are forced to deal with mainstream medicine. Even when I pointed out to his (now former) primary medical physician the fact that when he went on the intramuscular antibiotics and put on 20 lbs (which he later lost)plus was feeling better that CERTAINLY showed an underlying infection at play, he would only nod. This was after I asked my spouse to strip down in front of the doctor, where I finally expressed myself honestly and openly saying “Look at him! Look at how skinny he is! Fibro doesn’t do this! Degenerative disc disease doesn’t do this! He eats like a horse. He stays as active as his body allows him to. He eats healthy. If he doesn’t have lyme, then what the hell does he have? We have done EVERYTHING you have asked him to do to improve his health. EVERYTHING. Tell me what’s wrong with my husband!” I was in tears. I was desperate. And I no longer cared one bit how I sounded to these morons.
The doctor listened (at least he gave the illusion of listening), he said nothing and he put “lyme disease” (FINALLY) in his medical chart. However that held no merit for he sent my mate to the local infectious disease doctor, who dismissed the Igenix blood test and instead used the grossly inaccurate Elisa, which of course showed negative result.
His diagnosis?
“You have aids or syphillis.” Even though my mate and I both knew he had neither, he agreed to the testing just to prove these assholes wrong. And of course those showed “negative” as well.
“So then what DOES he have?” we asked.
“I don’t know,” he said. “But he doesn’t have Lyme Disease.”
Of course he had to say that. Of course the entire medical staff up at that nightmare medical establishment had to say that. They certainly don’t want to admit maybe they made an error. Maybe they missed his real health issue all these years.
Liability, after all. Stupid liability which renders these “professionals” paid liars who work for the pharmaceutical industry and other organizations, namely the Infectious Diseases Society of America, which refuses to recognize Chronic Lyme much less the testing done by Lyme literate docs. The controversy behind this illness astounds me. I don’t know of any other illness that is so blindly dismissed, disregarded. Millions of people suffer unnecessarily. Thankfully there are warriors who have the resources and energy and wherewithal to fight the good fight and bring attention to this issue. Telling personal stories is part of that fight.
For my mate, today, the nightmare continues to go on. He probably couldn’t get an appointment much less a doctor in the local system if he wanted. He has been flagged after all. He tried for months, with the help of a Caregiver, to get another scan of his lower left g.i. tract. That’s when he was told to “go away” and there was “nothing physically wrong with him other than fibro” and “mental issues”. When he insisted his hemorrhoids were prolapsing again, his new primary doctor roughly handled him (caregiver was witness and wrote a written statement), dismissed his concerns and said he “saw nothing”. I had picture and video footage of which I offered to send. No response was forthcoming. He tried to get a follow up visit to get another MRI to measure the tumor he has behind his right eye, which grew a bit in one year, so he was told to monitor it yearly, all to no avail as well. The tumor is also likely due to the lyme infection as benign tumors are not uncommon and he has several in his body and one medium-sized one he had removed years ago on his neck.
We tell this story and while most believe him, there have been a small few who think maybe the mainstream doctors are right. I dismiss such ignorance. It isn’t my job to convince anyone of the truth. But I will share it in the hopes that society will awaken to the sell-outs our medical professionals really are. Their incompetence. Their neglect. Their criminal behavior. This isn’t to say there aren’t good doctors. This isn’t to say these folks don’t start off with the best of intentions. However, this is to say unequivocally that these folks sell their souls to the darkness of Big Pharma and other equally corrupt and biased organizations whose focus is on profit and not on the health and well-being of humanity. I look at many of them as wearing the proverbial noose around their necks – one independent move and they lose their license.
So you can say I feel empathy for them. However, I also say this: shame on them all. Shame on every one of them who let my spouse suffer for so long. Shame on them for letting our child not have a “normal” childhood with a “normal” healthy papa or a mama with more energy and time. (Caring for a sick spouse is draining and time-consuming at times.)
I pray for good. I pray for Love. I pray for divine intervention. I do, after all, run this blog and believe we are ascending into higher dimensional realities where this darkness cannot exist. Until then I go by this: Karma can be a bitch and I wish for every one of them to experience the pain, the fear and the enduring stress we have had to face all of these years. At the very least, an apology would go a long way. I just want to know – when will we, especially those in the medical community- live by the motto “do what’s right and do no harm”.
I write this in order to help let go and heal. To forgive. It is time. I have carried this burden in my heart and in my body long enough. I cannot let such people continue to rule my days and instill such fear and anger in me. I have a life to live. But then again so does my spouse. And that’s where the paradox and pain lies, smoldering, quietly – much like Lyme disease itself.
