Having Late stage neuropsyche Lyme/tick borne illness or whatever the politically correct term is no

The average person has no understanding of what this disease can do to a person unless you are living it. Being that person, or witnessing your loved one go through this is devastating. I know there is a wide spectrum of symptoms some days worse then others.

Because I cannot be in the office and home to take care of my lyme child, it leaves me not much choice. Explaining this to my boss or anyone for that matter is very hard.

Right now my son cannot make it to school, so home instruction is starting and he should be able to focus on treatment instead of trying to just "make it" through the day.

Our day consists of tring to eat gluten free and taking antibiotics doxy, tindamax and plaquenil, trying to down 3 Xymogen shakes for leaky gut, avoiding a multitude of food sensitivities, taking licorice plus, adapten-all, grapefruit seed extract, nt factor, s boulardi, Florenif, ,chemet, doxepin, Zoloft, med caps, probiotics and glutiathione and throwing in a sauna or Epson salt bath for detox. (arsenic and lead a tad high) Main symptoms we are dealing with are behavioral...negative, dark, sad, belligerent, depressed, no motivation, ocd and other cognitive symptoms which could test the patience of Mother Teresa.

Since I am running out of space, my question is how do you get an average person to understand how sick a child can really be? It seems easier to say my child is very ill and until we determine what it is I will have to leave the job, then the next question is..is he in the hospital? God forbid, right? with all the non Llmd's

Also, I cant wait to see my child enjoy any part of life, at all, again, or just be able to have a conversation with him or go somewhere together.

I'm sure you can all relate to everyone around you partaking in life and you are stuck fighting a disease like this, that affects every part of your body and life...I could have never even imagined...


May God bless everyone in this fight, I pray for us all daily.

Any advice/viewpoint would be helpful.

NJLymefamily,

We went through a similar situation with our daughter who is completely well now. She is a senior in high school, and will be going to college next year on a swimming scholarship.

Her illness started when she was 9 y.o. She gradually got worse until she totally crashed when she was 13. At her worst she could not walk and was in terrible constant pain. She had a lot of cognitive and emotional issues as well. I could go on and on. She missed an entire year of school and parts of another year.

I can identify with your situation a lot. We felt very alienated from everybody that we knew- even friends and family. They didn't have a clue, even though we tried to tell them. At times we thought that our daughter was going to die.

We are christians and belong to a christian church. We had requested for the church elders to come over to our house to pray for her. It took them 2 months to get around to doing it. I tried to explain my daughter's situation to another christian friend. He replied to me- "you know Don, we're all going to die sometime." It was all that I could do to not knock him out stone cold in front of about 20 people. I know from experience the hurt when those closest to you are among the most ignorant.

I don't have any advice for you as to how to educate people about how sick our loved ones may be. I guess that is why this forum is a safe haven for many of us. The people here really do understand.

I am so sorry that you have to go through this with your son. I would be glad to talk with you sometime if you would like.

Don

I am so sorry to hear what you are going through. My 12 year old son also had a brief bout with lyme and is fine now. However, my husband had a severe case of neuropysche lyme and I had the same battle as you of trying to explain to people including his employer of what was going on, (especially since the hospital said there was nothing wrong with him ?!). He was out of work for 4 months. In any case, I would tell people he is suffering from a neurological bacterial infection which is indeed what he has. Perhaps explain that the symptoms are similar to meningitis but it is not contagious (don't want to alarm people).

I myself have battled depression and anxiety and neuropsychological lyme prior to my husband and was thankful that I was better and able to help him by the time that time came.

We are all feeling well now so please hang in there. Is your son being treated with an antibiotic that crosses the brain barrier? This is very important with neurolyme.