late stage lyme disease

[philamom]

When exactly does Lyme become a chronic stage or late stage lyme disease? Is it a year? or many years? Or does it depend on the amount of damage done to the body's system? I guess it becomes even more difficult when you don't know when you were infected.

[sf_mom]

I read some where it is one year undiagnosed. I think I've had it for at least 8 years... My only symptom for the first two years was night waking (3 to 5 a.m.) and attributed it to stress at the time. I do not think it relates to damage done to body because you can carry for years without symptoms.

 

-Wendy

 

 

When exactly does Lyme become a chronic stage or late stage lyme disease? Is it a year? or many years? Or does it depend on the amount of damage done to the body's system? I guess it becomes even more difficult when you don't know when you were infected.

[lyme_mom]

When exactly does Lyme become a chronic stage or late stage lyme disease? Is it a year? or many years? Or does it depend on the amount of damage done to the body's system? I guess it becomes even more difficult when you don't know when you were infected.

I would add that I do not like the name "chronic lyme" because it suggests you can never get rid of it and I am hoping this is not true. According to my llmd they are very successful in treating lyme and sometimes it comes back within a few months of stopping treatment and the patient needs to do a few more months of treatment but afterwards they are done.

[philamom]

When exactly does Lyme become a chronic stage or late stage lyme disease? Is it a year? or many years? Or does it depend on the amount of damage done to the body's system? I guess it becomes even more difficult when you don't know when you were infected.

I would add that I do not like the name "chronic lyme" because it suggests you can never get rid of it and I am hoping this is not true. According to my llmd they are very successful in treating lyme and sometimes it comes back within a few months of stopping treatment and the patient needs to do a few more months of treatment but afterwards they are done.

lyme mom- can you refresh my memory--if you don't mind posting, if your children are still being treated with abxs?

[lyme_mom]

When exactly does Lyme become a chronic stage or late stage lyme disease? Is it a year? or many years? Or does it depend on the amount of damage done to the body's system? I guess it becomes even more difficult when you don't know when you were infected.

I would add that I do not like the name "chronic lyme" because it suggests you can never get rid of it and I am hoping this is not true. According to my llmd they are very successful in treating lyme and sometimes it comes back within a few months of stopping treatment and the patient needs to do a few more months of treatment but afterwards they are done.

lyme mom- can you refresh my memory--if you don't mind posting, if your children are still being treated with abxs?

One child is still being treated and he seem to finally be symptom free. The real test is when you stop the antibiotics of course but things are looking great for him these days. We are pretty certain that he had lyme for a number of years based on his symptoms and by the time he got diagnosed he was quite ill-he got facial palsy and just felt awful (headaches, joint and muscle pain, etc.). His face still hurts sometimes like when he gets on an airplane so I don't know what this means. May mean that the high emfs on the plane bring out the spirochetes or maybe bartonella or he just has some lingering problems in his facial nerve. More importantly my excellent llmds (we have two we have used over the past several years) tell us that you can get rid of the symptoms with the right treatment so I am hopeful we will be done with this at some point (unless they get bitten again by an insect carrying lyme...) Our other child was treated and has been symptom free a year now but he was never that sick. He definitely had lyme but we would never have known had it not been for our experience with our child who was very sick with lyme. For him we nipped it early. A third child needed to be treated several times and it is too soon to know whether we are done with it for her. We think she had babesia b/c of her symptoms and the fact that she really got better after babesia meds were added. Babesia is also tricky to get rid of. A year from now I will know a lot more of course :-). Either way there is light at the end of the tunnel b/c you can get your life back and if it takes a while longer on antibiotics that is much better than being so sick.