We all want total recovery, not these percentages you read about….we want it GONE!
Now that I am truly on the road to recovery, I am eager to share my experiences, with the clear understanding that we are all different and what is working for me may not work for you. The key is to keep trying – never give up and cling to those good days. Whatever you do, DON’T ignore it hoping it will go away!
After bumping along on the bottom in spite of many false hopes and wild gyrations in between (the roller-coaster ride – you know what I am talking about), I was diagnosed as immune deficient last year and began IVIG infusions in October of 2010 every 3 weeks.
I was originally diagnosed and prescribed this treatment by Dr. Katz in Orange, CT who has been very successful in helping people recover from Lyme using IVIG infusions, however, he is the first person to say that IVIG is not a protocol for chronic Lyme disease.
Are you confused yet?
I am not a medical doctor, so I can only share my experience and report on what I have researched. Ironically, the only post on Dr. Yaller’s blog this year (excellent LLD in Germantown, MD) is entitled, “Immune Disfuntion and Antibiotics”that helps explain what happens to the immune system when you have Lyme disease (and you can imagine far worse consequences with multiple co-infections.)
I am finding that many people are afraid of the IVIG infusions. If you picture your immune system as an army to protect your body from invaders, and imagine all of the great and small pathogens that wear down our body and demand immune response, then add to that lack of sleep, over-programmed lives, stress overload, improper diet, pollution, allergies, heavy metal poisoning…our bodies have become little toxic waste dumps with our immune systems running on empty.
Some people with Lyme disease have an over-active immune system that will attack the body and cause additional physical problems, some of which can be life threatening. So the first step is getting a complete evaluation by an expert immunologist or neurologist on the condition of your immune system.
If your immune system is compromised – and it doesn’t necessarily need to be by that much if the condition has been persisting for many years – then a systematic plan needs to be put in place to jump-start and permanently strengthen your immune system so that it can better battle your chronic Lyme disease and co-infections.
I have waited since November to write this post so that I could give a thorough report of the consequences of my strategies – including some independent decisions I made that backfired in a bad way (but taught me a lesson I am happy to share.)
Every three weeks, I felt my energy increase. A side effect of the infusion is a throbbing headache – my first one last 3 days – as bad as my worst migraine – but with lots of water and Benadryl (doctor’s orders), the headaches became less severe until they are now almost completely gone (I take Excedrin Migraine at the first hint of the throbbing and it dissipates.)
The energy level built slowly. A few good days with the rest comatose in bed because I tried to do too much while feeling good for the first time in so many years. As the months passed and the cold Maine winter passed, I found I could spend more time outside walking, mucked stalls and filled water buckets for the first time in five years (OK, it took me ten times longer but I was on my feet doing it!), and in the last few weeks, having found help for the chores, I am able to use the blossoming energy to actually ride my horses – not a one day celebration being lead around on a line, but holding the reins in my hands and trotting – even cantering my huge warmbloods – without any fear! Yes, I have a long way to go to regain my stamina, muscle tone, independent muscle control, strength…but my dreams are coming true!
Your dreams can come true too!
(Originally posted on July 27, 2011)