I am a non-blogger these days, often contemplating writing and then settling on the fact that I no longer have anything 'interesting' to write about. I am normal and boring it seems. And I love it.
In recent days however, the India pot has been stirred up a little. I have had several people contact me, concerned that I have relapsed. Apparently, that was the word around what I call 'Lyme-town,' the virtual world where Internet forums and email groups and patient blogs rule. And often, as I've learned in this little loved cyber town, reporting can be inaccurate.
So, I am here to set the record straight, and not for the first time. I have been talk of this town before, sometimes in good ways and sometimes not. This is the price of stem cell fame.
Here goes it.
I did not relapse.
I am healthy and happy and continue to be asymptomatic.
My recovery, due primarily to stem cell therapy in India (with a little side credit going toward pre-stem cell antibiotic therapy, as stem cells only have the ability to repair the body but cannot kill bacteria), is still mine to keep. I believe India is an extremely viable option for Lyme patients to consider pursuing, if traditional treatment has failed. I believe it saved my life. Nothing I had tried prior had come even close to restoring my health back to whole again.
I have disclaimers that always come with any talk of my improvement with stem cells. I give them genuinely, and not out of fear that something I say will send people in the wrong direction. They are just what I've come to know about this treatment.
1. I do not recommend this treatment for two categories of people: Anyone with ALS (this excludes those with ALS/Lyme disease whose physicians, or themselves, believe their symptoms may be primarily related to Lyme); and those with psychiatric disorders.
For most with ALS, I simply think the disease is too fast progressing. I don't think the stem cells can keep up, fighting the downhill battle of this disease. I think it's too treacherous a trip and too costly financially and health-wise for those suffering with this delicate disease. In addition, I do believe it slows down the process just enough to make the natural disease process more difficult, but not enough to save the life of the suffering person. I have known many who have lost their battle with ALS after several trips to India. In fact, almost everyone I know who has gone. The one patient I know personally who is still living, is just doing that...living, but by no means engaging in life as most of us know it. Again, this statement excludes those with ALS/Lyme disease whose physicians, or themselves, believe their symptoms may be primarily related to Lyme.
For psychiatric patients, I think it is downright dangerous. Culturally and medically, India (and its incredible doctors), do not have the same skills we have in other countries to safely handle these types of patients. The level of understanding from a human and medical perspective is not progressive enough yet, for me to feel this would be a good option. It is not for lack of being well meaning and compassionate. It is just a mix of Eastern culture, and limited experience. The very skilled care needed in the case of a psychiatric emergency is not readily available and as advanced as most psychiatric patients are accustomed to. And above all that, this experimental treatment is far too experimental to even gauge what the effects on the brain chemistry could be in someone with a psychiatric condition.
With both of these conditions, my biggest concern is that once given stem cells, the effect (whatever that might be on an individual basis), cannot be undone.
2. This worked for me. But yes, I have known others who did not have the same results. There is a huge component of individuality when it comes to medical treatment of any type. Because it worked for me, does not mean it's a cure-all for everyone suffering with Chronic Lyme disease. On the flip side, because others may have not gotten miraculous results, means nothing against the treatment either. I learned this through my years of my own illness. For instance, hyperbaric oxygen therapy, which I attended for nearly 100 treatments (far longer than the recommended treatment length), gave me very little improvement. In fact, after the treatment, I had slightly better cognitive functioning, but my pain was worse than I had ever experienced. However, I met former Chronic Lyme patients at the hyperbaric clinic who came back year after year for maintenance doses as they believed that treatment was keeping them in remission, after having tried many other failed modalities.
The generalization of one person deciding whether stem cell treatment, or any treatment, is a reasonable solution to Chronic Lyme disease, is very dangerous. I will not do it here, or anywhere. Each person has the right to follow their own path, to find their own health, to be the anomaly.
In my own world, I have one condition that did not resolve with stem cell therapy. In fact, I believe it was exacerbated by it (probably due to hormonal fluctuations in the body post stem cells). I have endometriosis, which causes extremely painful and debilitating menstrual cycles. However, through my exploration of energetic medicine in the last six months (including Emotional Freedom Technique, meridian therapy, Eden Energy Medicine and others), I have made huge strides. I still have a little ways to go, but not much at all now. This, after 5 failed surgeries, years of hormone therapy and a host of other drastic attempts to gain control of it. I have, by working on myself, gotten completely off narcotic painkillers during my worst 1-2 days a month that I had to use them, and am unbelievably impressed with this work. I have gone back to school to become a practitioner myself, and have seen incredible results with those I've shared the techniques with, for both physical and psychological symptoms.
But as for Lyme, I bid it farewell a long time ago, and frankly, I never expect to see it again. It has taken much for me to stop peeking around corners every time something doesn't feel 100% right in a very normal way (being tired after a long day, something I ate disagreeing with me, etc.). But I have done it. I am far more likely to think of 20 things it might be when I have a little headache, before Lyme ever crosses my mind.
When recovery happens quickly from a chronic condition, normalizing your life to meet it becomes a whole new ball game. One that takes time. Admittedly, sometimes I'm in it, even this many years later. But I can say without doubt, there is no game I'd rather be playing.