Friend with Lyme Disease...chronic & severe...very worried

Hi there

I don’t have Lyme Disease myself, but a dear friend of mine does.

He is a 60 year old man who I think was bitten by ticks (several different times) back around 30-40 years ago while living in Vermont. He lives in New Jersey now and has not been bitten for a very long time, but never received treatment for the earlier bites.

Up until this year, he would get a Lyme “attack” every few months but be able to shake it off himself. He would feel exhausted, dizzy, cloudy-headed and have very sore joints (knees, wrists, ankles, etc). In about 2-4 days it would be gone and he’d be back to normal again.

However, earlier this year he got an attack and after a week of not feeling better, he went to the doctor who put him on oral antibiotics (I don’t know which ones). His symptoms cleared up slowly. The course was for 2 weeks and by the end, he still didn’t feel 100%, but was ok enough to get on with his life.

Looking back, he never properly got over that particular Lyme attack. He had been very stressed several times between then and now, and each time some vague symptoms would flare up and then die down again quickly. He felt the Lyme was close under the surface and any stress would bring it back again.

Just over 2 weeks ago he was seemingly fine. He runs everyday, is in good physical shape…but then one evening he was so sleepy he couldn’t stay awake, and he couldn’t focus his mind. That was the last I heard from him for a week. When he contacted me again, he said he’d been in the hospital on IV antibiotics for Lyme. It got into his heart muscle this time.  I suspect it had been there for a very long time, or at least since the last time when the oral antibiotics didn’t quite work 100%. He came home after that week only because he had no way of paying for the proper longer term treatment at the time. His family was ordered by doctors to constantly watch him, do not leave him alone, and that he must return within 45 days for proper treatment.

So…he has to go back into the hospital very soon for what he’s calling “prolonged” treatment. I don’t know how long this will be for. I do know most patients go in initially and then leave and continue very long term treatment (6 weeks to 2 years). Since it is in his heart, they may need to keep him in there for longer. Also they may need to keep testing his levels to make sure the drug combinations they have him on are actually working before they discharge him.

This is going to cost him $20,000. Is this normal? He actually had no way of paying for it so had to marry his partner last week so he could go on her employer’s health insurance. He did not want to do this, but he had no choice.

Anyway…I just thought I’d post this…I need to talk to someone about this. I love my friend dearly and am very worried. He says he is very sick and his health is deteriorating rapidly. I am worried when he does get treatment back at the hospital they won’t be Lyme experts and he won’t get the proper urgent help he needs. I have been researching everything I can about Lyme to try and help him, but another problem is I cannot have any contact with him now. He is distancing himself from me completely and I feel I have lost him to this horrible disease. I am also angry because he’s known about the fact he had Lyme for SO many years, but was always completely resistant to going to get proper hospital treatment. He didn’t want to be in hospital and on medication for years. I wish he had done it though…cause now it may be too late for him.

He has told me the doctors think his problems will always be ongoing, no matter the length or intensity of treatment. This depresses me greatly. He is very upset by this as well. He feels his hopes for a happy future life are gone (not just because of the Lyme, but because as I said above, he’s had to marry someone he did not want to marry so he could have this required treatment. So now he is tied to this person and living in a house he did not want to stay in for very long before this latest Lyme attack happened. Now he cannot leave or he can’t pay for any further treatment. Very sad situation)

Thank you for listening.

Hi Stevie - welcome! Your friend's story is a sad one indeed. I can totally understand your being frustrated with his choices, although the positive side of the stubbornness coin can be resilience! Unfortunately we're trained to believe that lyme isn't a big deal - a friend of mine just told me she got a tick bite and she hasn't been feeling well since, and I've done all I can to all but scream at her that I've lost so much from lyme disease, but everyone's going to follow their own path. Do try to keep in mind that these infections, and just being sick in general, can affect a person's brain and mind, and also that people do tend to push others away at scary times in their lives, sometimes.

It always seems to be a perfect recipe for lyme disease in retrospect - stress, physical strain, suppression of the immune system...I do have to tell you though, even a fantastic doctor, even the most well-meaning, compassionate doctor, who is not properly educated in lyme disease (as is very often the case in hospitals) may not be able to help. It's best to see a LLMD (lyme literate medical doctor) - as they're trained by ILADS to understand and know how to treat this infection and its consequences in all of its complexity.

If you go to the profile section and add your email address, I can give you information for a cardiologist who is lyme-literate that was recommended to me recently - I also live in NJ. I haven't seen him/her yet so I can't vouch for quality, but I think it'd be worth looking into.