Questions for caregivers/people with Lyme Disease

Welcome and that's nice of you to help her out. I'm mom to a teen with Lyme and while I'm only dealing with 1 sick family member, there are others here who have Lyme and have multiple kids with Lyme. I have no idea how they manage at all other than their love for their kids keeps pushing them forward. They are saints.

1) As a caregiver, how has your life/daily routine changed since your friend/family member's diagnosis?

Luckily I work several flexible part-time jobs and my son was old enough to be left alone for a few hours but some can't be left alone. Often I would have to drop everything and pick him up if he was out and started collapsing from fatigue or breathing issues. Literally every minute of every hour there is something to deal with, research, do for the sick person. That can last months/years and there's no way to know. Eventually if treatment works, the space between these things grows and you get some of your time back to do other things. I had many late nights doing the other household stuff.

2) what changes have you noticed in your friend/family member since their diagnosis?

Too many to list - mostly physical and psychological. Most of it has returned back to a "new" normal but some personality changes are probably here to stay but he's a teen so ever-changing anyway, sick or not.

3) what advice would you give to new caregivers of people recently diagnosed with Lyme Disease?

I would give it to you - her friend. Whenever you can, suggest/offer to help out - pick up prescriptions, watch her mom so she can get a break, drop off a meal, run errands, walk the dog, fill the pill boxes weekly, whatever. She may not have the mental capacity left after caregiving to tell you what she needs so just do stuff for her that makes her life easier without requiring her to think much about it. For her, find 20 minutes a day even if it means getting up earlier, to have her "me" time in whatever form that takes (meditation, 7 minute workout, read religious text, drink a cup of tea and read the paper etc).

4) To caregivers and/or someone with Lyme disease: What changes have you noticed in your speech/language/communication and/or cognition, if any? There were times when his speech was unintelligible but that was rare for us (some have more difficulty). Brain fog is definitely an issue. Anger and extreme frustration was another issue although he was remarkably sweet when sickest. That mostly happened on days when our son was completely immobile and so he watched comedy series hours on end even if he wasn't taking it all in. I'm a huge believer in the benefits of healing from comedies for the bedridden!

5) what do you (caregivers or persons with Lyme disease) do for fun/relaxation? (Any leisure activities, support groups, or fun weekend plan
Ideas would be helpful!) - Getting support from here and Facebook groups, which I just discovered and they're quite active, I designed a Lyme website the first year because I had to be at home as my son's nurse. Otherwise, I suggest trying to fit in some of the activities she enjoyed before her mom got sick and getting away from Lyme for short periods of time and not feeling guilty about it.

6) Lastly what would you want the world to know about Lyme Disease that you feel does not come across in a textbook or informative website?

How horrific it actually is - there are reasons suicide hotlines are pinned at the top of support sites, that it is an immune suppressor, how it is now and has been an epidemic for some time (so many with other dx of Alzheimer's, ALS, dementia, MS, fibro, RA and many other disease actually have infections), how there is somehow a conspiracy to keep the general public from knowing how unbelievably bad and life-changing it truly is if you don't catch it right away and to properly research to treat, that tests used by mainstream drs are VERY inaccurate, and how many people can get to remission but it can and does take years - I believe DS's LLMD theory that the infections never clear the body 100% and that getting back to a functioning immune system is key to recovery. Also that there's no one path for healing and it's a crapshoot to find what works for each person.

Finally, looking back now that DS is mostly in remission, I would say that I think comedies, sunlight and treating for vitamin deficiencies (eg vit B12, vit D, minerals) while killing the bugs are things that really helped our DS. His treatment of pulsing antibiotics/anti-malerials worked for him over time.I wish we knew to try ibuprofen steadily on bad days to see if it helped (although not sure where it could have fit given all the pills/supplements), medical marijuana if we could have gotten it legally and he were older (dangerous to teen brains) would have helped him a lot for chronic fatigue because he tried it 2x and it was a miracle.

You're very welcome!