Three months down, Three to go…

I have been on that latest treatment protocol for a little over three months now. The protocol is for 6 months. At the halfway mark I was really hopeful that I would start to see some results even if they were small, heck I’d settle for tiny. Unfortunately that has not been the case. It seems that each month gets harder and harder.

I have really come to dread each of the weeks in the 4 week cycle for different reasons.

Week one brings nausea and vomiting especially in the morning, incredible fatigue (more than usual and I never thought that was possible) and a feeling like I am slowly dying.

Week two, which is that harshest of all the weeks, continues the overwhelming feeling of nausea and vomiting, fatigue, and the feeling that I am being poisoned. I guess in all actuality that is what is happening to my body. The more cycles that I go through the more this intense this feeling becomes. Joint pain usually is not as bothersome this week but it is still there.

Week three, which goes after the co-infections mostly, is difficult but in different ways. The nausea gets a little more manageable and the vomiting decreases slightly. The fatigue is more mild as well, meaning I am not sleeping half the day away then the full night as well. I can survive this week with a couple of hour naps during the day and then an early bedtime. The joint pain is starting to get intense towards the end of this week.

Week four, which I am the week I am off all antibiotics, gives me a bigger reprieve from the nausea. The main complaint for this week is the excruciating joint pain, especially in my neck, hips, and knees. This is the week that I feel like the bacteria and parasites are seriously attacking my body! This all makes sense because the philosophy behind the pulsing therapy is to fight against the active bacteria and parasites for the first three weeks in hopes of killing them off. The fourth week  is supposed to trick the ones that survived and are lying dormant to come out and basically attack me again without giving them time to multiply before starting the cycle all over again.

Here is a link to an article that supports pulsing therapy based on research:

http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/

In all honesty treating Lyme disease and co-infections is still a guessing game for doctors. There is such limited funds for research that there is no sure-fire cure. The best that I hope for is to someday reach a place that I consider to be remission. This is like rolling a dice right now with treatment. There are success stories out there but there are more stories of people continuing to be sick and decline in health. I am not a pessimist and I try to be optimistic but at this stage I am truly frightened. June marks one year of heavy antibiotic treatment for me and 10 of the past months I have had a PICC line to deliver many of the drugs directly to my heart.

I don’t know what is ahead for me come September at the end of this protocol. I am hoping by then to have some notable improvements!

No matter what the outcome I will continue to fight these ugly diseases. I WILL NOT GIVE UP! I know that I will continue to fall down and am very thankful for the people in my life that help me get back up, whether that be emotionally or even physically. This is defiantly not something that one can tackle on their own.

I continue to keep talking about tick borne disease because it is a worldwide epidemic. Millions of people are suffering with this just like me. Many people are continuing to be sick and do not realize that tick borne disease are the cause.  I have had the pleasure of talking to a new friend recently who suspects that she has Lyme disease. She has all the classic symptoms. Through hearing her story and sharing mine we had so many similarities. One of the key things that I shared with her is that yes are stories are somewhat different but overall all of us suffering from these disease are the same and our stories are not unique.

I share my story, struggles, and treatment plan to help other people understand that they are not alone. Suicide is the number one killer with those of us who suffer from tick borne disease. This is very serious and very sad. Devastating pain that is unrelenting is sometimes unbearable. If you are thinking that this is something that you no longer can handle please talk to someone!

I keep saying that out of this suffering must come something good! I continue to meet people who are very sick and suspect that they have Lyme disease. I try to be a place of support and resources for them. I have found great encouragement in the local support  group that I have started. It is imperative to surround yourself with others who are battling the same illness.

As the journey continues so will my updates.

Be well my friends,

Heather

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1 thought on “Three months down, Three to go…

  1. The Person Next to You

    I don’t know if this helps, but as long as treatment has been (over 2 years), each time we switch up treatment, it seems that there is a big progression around month 4. My guess is it is because the life cycle of a blood cell is 4 months, so once you get that first batch of bugs out, you start to get some relief.

    I do enjoy reading your blog very much.

    Like

    Reply

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