I'm sorry to hear about your son's illness.
Many of us here never saw a tick or a rash either, and the symptoms can change over time from not much to really bad or the other way around. It's different for everyone.
The doctor sounds like he is paying attention, which is great -- too many drs don't take Lyme seriously.
Was your son tested for coinfections -- other diseases that are sometimes carried by the Lyme ticks? That can make a big difference, because the coinfections are not always treatable by the same meds as Lyme.
As to dosage and which drugs, every doctor is a bit different. I've been on several different drugs, and they are different from the ones your son has been on, and same goes for many of those posting here.
As for IV antibiotics, it's again at the dr's discretion when that is appropriate. Some drs do not use IV at all and treat only with oral meds.
Did the dr say why he wants to do a spinal tap -- is it to confirm Lyme, or to look for other ailments? Some drs do spinal taps to diagnose Lyme, but in what I have read, there is often little to no evidence of Lyme in spinal fluid.
There is a website called ILADS [dot] org that has lots of information about Lyme, and in particular a paper by Dr Burrascano that summarizes much of what is known about Lyme.
You should also be aware, if you are not already, that there is a serious split in the medical community over the diagnosis and treatment of Lyme. The so-called mainstream medicine view (held also by the Centers for Disease Control) is that Lyme is hard to get, not widespread, and easy to cure. The contrary view, held by drs in the International Lyme and Associated Disease Society (ILADS), is that Lyme must be caught early and treated aggressively, otherwise it becomes significantly more difficult to cure.
There is a movie coming out called 'Under Our Skin' that tells the story of Lyme, and I understand there is a movie trailer online that summarizes the movie. There is also a book called 'Cure Unknown' by Pamela Weintraub that is interesting but takes some time to work through ... it is partly the story of her family and their struggle with Lyme, and partly the story of why the medical community is so split about Lyme. Great book, but not a quick read.
The first question I would ask the dr is if your son has been tested for coinfections like ehrlichiosis, babesiosis, and bartonella (there are a few others as well, but this is a good start).
I'm not a doctor, so these are just my uneducated comments -- let us know how it goes for your son.
Welcome. I am very sorry about your son's illness. I can't really add anymore info.than Jackie has already given you. Is your son't doctor a lyme specialist?
Thank you for writing back. And thank you patsy10 also.
My son is seeing an infec/disease dr who deals with lymes as one of her specialties. I did ask about the other tick borne diseases and she said "we know its lyme and we know its active." Thats it. The spinal tap is to see if its in his central nervous system. We go to the neurologist next week and then we will set up for the other tests. This is so new to me. I'll keep you posted
I'd press about the coinfections tests 'just to be sure' -- they don't necessarily respond to the same abx as Lyme.
If I understand correctly, Lyme is not often seen in spinal fluid, and so a spinal tap may not give the evidence sought. Since a spinal tap is not an insignificant thing to do, you might want to do a little research into that aspect before proceeding. (If the ID dr knows it's Lyme, why do the spinal tap, even if it were likely to be good evidence?)
There are other tests to do to see if the brain is affected (e.g., SPECT scan), but I don't know if finding Lyme in the spinal fluid or brain changes the treatment approach.
I am NOT a doctor, however, so don't rely on me -- I don't want to confuse matters for you, and you should rely on your doctors and make decisions based on your on inquiries and the responses you receive. Hoping for the best for your son --
One quick question....do the results of the co-infections show up the same as the lymes results? Meaning the antibodies and the bars on the block? Or is it something else? Are the results similar on the lab reports?
If the spinal tap comes back negative for lyme it does not mean he doesn't have active neuro lyme. The tap often comes back negative even with significant central nervous system lyme.
I was prescribed Doxy for 2 months. I took 100mg twice daily. Several doctors recommended this as a first step in treatment. It didn't do much for me. So I just started taking Rosephin, which is supposed to be a very strong antibiotic. According to several doctors I've seen, it's effective in treating longer term Lyme's disease.
My infectious diseases doctor also suggested I get a spinal tap after seeing a neurologist at John Hopkins who couldn't come up with additional causes. I didn't get the spinal tap because there are some risks; and based on feedback from other doctors it wasn't necessary given I'd already taken many blood tests and had a brain and neck MRI.
The tests for coinfections are separate from the Lyme tests, and they come back either positive or negative, if I remember correctly. The Lyme-savvy doctors often order Lyme tests from a lab called Igenex because they do a broader test, but non-Lyme-savvy doctors usually think the LabCorp or Quest tests are adequate.
There is little controversy about the results of coinfection tests, but it's my hazy impression that sometimes the more obscure possible infections are a little hard to nail down -- though I can't tell you exactly why I think that.
The obvious ones I see mentioned are babesiosis, ehrlichiosis and bartonella -- there are others like mycoplasma and (other?) cell wall deficient bacteria that I don't know anything about.