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Unfathomable Boundaries

December 3, 2015

Unfathomable Boundaries

December 3, 2015
Posted in: Lyme Disease | Reading Time: 4 minutes

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Recently, I started calling my chronic illness Lyme-MSIDS, a named coined by Dr. Richard Horowitz who's treated thousands of Lyme patients successfully. Lyme-MSIDS stands for Lyme-Multi-System Infectious Disease Syndrome. The reason Lyme patients don't get better is because there are more things at play such as co-infections, immune dysfunction and multiple systems in the body, muscular-skeletol, peripheral nervous system, central nervous system, endocrine system, and others are attacked or shut down. Lyme itself particularly complicates other infections because it is a master at hiding itself and other infections while completely de-railing a person's immune system. Some in the Lyme community even call it an AIDS-like disease because of its impact on the immune system. Some feel that the bacteria itself releases a fungal infection that in turn causes chronic inflammation system wide and immune shut down.There's a lot of divisiveness in the Chronic Lyme disease community itself in terms of how to classify or describe the disease and what treatment works. One thing is certain: how a doctor views Lyme disease makes a huge difference in how he treats it and how successful that treatment is.

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I give a lot of shots to myself to treat my illness, but one particular shot, Bicillin, I can't do because it's a thick medication (like Elmer's Glue) that must be administered slowly, over 2 minutes long to reduce bruising, lumping and scar tissue. Since I do so many shots, it's important to keep scar tissue down so I can continue to do the shots without pain. I usually go to a clinic and have a nurse administer it, but over Thanksgiving, Mr. Wild Dingo had to give me the shot.

Internet, I swear, he gasped in horror when he saw the size of the needle. It's a 22 gauge needle as long as my index finger.  I should have told him to simply remember all the time I left the heat on in the house when I wasn't home. That would have made it easy for him to stick me. Instead, I merely laughed and stuck it in my booty and told him to push. Lyme has both Mr. Wild Dingo and I crossing boundaries we never dreamed of crossing!

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Here's how a Lymie packs for a three-day trip. It doesn't include the refrigerated medications. It's totally whack, huh?

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I'm at a plateau and only making small progress each month. I've made lots of progress with other symptoms, but my brain is still really struggling to function normally to the point I still can't have normal conversation. I still mix up simple words all the time and I have difficulty following a conversation. I can literally forget what someone says to me within minutes. I would not have been able to get through Thanksgiving without the IV glutathione to clear my mind for a few hours. And Internet, that's just whack. A person cannot rely on daily IV glutathione to function.

In addition, my immune system is still struggling. Partly due to the disease itself and probably partly due to the amount of drugs I'm taking to kill the pathogen, as they are immune suppresors. Per my doctor's recommendations, I take an enormous amount of supplements, herbs and even IGG antibodies to do as much as I can to help the immune system. And still it is struggling. This is not a case where taking Vitamin C will help (although I do take it as part of my routine). My immune system is literally missing 2 classes (out of 4) antibodies that are made by the human body. As in, there is zero of them. The other two subclasses of antibodies are barely hanging on.   We're more or less at an impasse pharmacologically speaking.

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So now the next steps, recommended by my MD, are a combination of alternative meds/treatment and IV IG to boost the hell out of the immune system and hopefully turn it back on. IV IG is a serious step as it involves plasma antibodies from another donor and is costly. It's more or less a last resort for people struggling with the immune system. I'm not sure if or when it will start because it requires a lot of pre-processing paperwork. Regardless, it is another boundary I'd never thought I'd have to cross. And yet, I am ready to leap.

Ain't Too Proud to Beg

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4 comments on “Unfathomable Boundaries”

  1. Thanks for sharing your MSIDS (Lyme) journey publicly. Let's hope this next phase offers a positive change. Most people can't imagine so many years of suffering, all from the bite of a tick.

  2. What you are enduring is totally unreal. We are sure that we haven't the slightest comprehension of what your days and nights are like. But we truly admire your courage and strength, and we pray there is a point soon where life is so much better for you. Hugs and prayers.

  3. Julie, I send you love from the heart-butts and from me. On thoday's afternoon walk, my big, buff rottie boy who is gorgeous, handsome and strong got his ass totally kicked by a nine and a half year old girl border collie/rottie mix. He couldn't have been happier. It was the best part of my day and I wanted to give it to you 🙂

  4. This whole thing is like some sort of scary horror story come true... it's hard to believe it's real... I'm so sorry you're having to go through this and that it just seems to get worse. I hope the new treatment helps soon. I'm scared that your immune system is that low. 🙁 You're in my thoughts.

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