I know this isn’t a specific place to discuss illnesses but I’ve been struggling with this condition for over a year now and the treatment itself has been difficult and subpar. Personally, I’ve suffered terribly as a result of it and the symptoms have been nightmarish, debilitating me to the point that I am unemployed and find difficulty at times with even playing games. Are there any others that either have it or know someone with chronic/late-disseminated/tertiary Lyme that doesn’t respond to the treatments suggested by standard physicians? If so please feel free to discuss, and if there’s a better place for this discussion then I don’t mind it being moved.
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The only person I know who had Lyme disease is my daughter,but it was caught relatively early.I believe she was the first in NJ,decades ago.She was 5 years old,and so sick!I had to keep shades drawn because the light would make her scream in pain and throw up.She lost so much weight.She was weak,and so fragile seeming.A bullseye rash kept coming and going on her back,right where it meets her neck.Her pediatrician had started to accuse me of making her ill when he went on vacation and I was referred to another doctor.As I was carrying her into his office,he arrived.I was holding her ,her back was exposed,the rash was there.He exclaimed"I’ve just left a seminar in Connecticut,your daughter seems to have Lymes disease,bring her right in".She immediately started iv antibiotics.In one week she was well.
But,she was left with arthritis,back pain,and possible liver damage.Now,years later,she has issues that require her stick to a low fat diet among other things,no Tylenol,etc,because her liver enzymes run high.
So,even after treatment,be very careful and stick to monitoring.I can only imagine what long term having the disease could do.I wish you the best.
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Well I can only imagine that was a nightmarish experience for you and hope the best for your daughter. She is relatively lucky that a one week regiment of antibiotics defeated the infection as there are many young individuals who have it in a chronic form after having it go back into a latent or dormant form only for it to arise later in life. It’s a shame that there are so many similar stories of being accused of making up the symptoms or feigning illness, something I personally don’t understand since the odds of that are lower than the disease prevalence.
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You want to use old fashioned penicillin on that. For some reason it can “sucker punch” the Lyme where it is resistant to most modern antibiotic and will “hide” for a while but not be cleared up. I learned this the hard way from friends of the family who got it.
Not quite sure where you got that information from, but Amoxicillin is in the Penicillin family though AFAIK (treatment has been long) I’ve never tried either since had an allergic reaction when I was an infant. As for any ‘sucker punches’ I feel like I’ve had worse already.
imo, this is common among illnesses that have vague symptoms. its easy to be skeptical of things most people experience in minor amounts day to day. because of that, alternative medicine has hijacked it, recommending their typical line of quackery to cure it, both to people who may or may not actually have the problem. or some recommend antibiotics for life or other unnecessary treatment. but there is no evidence that you actually fail to clear lyme disease - the bacteria is gone after treatment. what’s left are symptoms. what you need is symptom management not bacteria management. so the whole issue is a bit muddled really.
also as you indicate, original penicillin vk is rarely used these days. resistance is common and it is less effective than amoxicillin, also in the penicillin family.
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