I saw the ID today. I told my whole story starting with the rash, bites etc... The doctor wants me to call back when I am in a flare-up of my symptoms so that other testing can be done at that time. A neuro told me this as well. He said the spinal tap needed to be done at the time of acute symptoms. All that was ordered was standard lab work and a lyme test. However, to my surprise the doctor said I could very well have a tick-borne infection and even mentioned "chronic lyme". He agreed that the testing is not reliable and said there is a lot we don't know about these kind of diseases.
The office staff also told me that they see lyme all the time. She said at least a case per week. This really surprised me as well. She did say though that the western blots were positive on most of them.
So I guess the appt. really didn't help me at all but at least I know lyme is being acknowledged here.
My experience is that the IDs put a lot of faith in the classic acute symptoms at the time of infection, like having a bulls-eye, to dx one with Lyme. And of course, simple statistics of the area you live in, etc.
Patsy, please clarify your comment that the spinal tap needed to be done at time of acute symptoms. Did you mean that the ID was acknowledging that the spinal tap is not effective if done during the chronic Lyme phase? Or do you mean that testing needs to be done during acute phases within a chronic illness. Hopefully, what I wrote makes sense.
My symptoms wax and wane on several day cycles (typically), but I don't feel that they are so spikey that I would expect my bloodwork or spinal fluid to be much different. I guess you go into a walk-in setting so you can do your spinal tap on demand?
I don't think that he was specifically referring to lyme. I told him about my recent flare-up that has settled down now. He said things show up during acute flare-ups but not necessarily when things are stable. He's the third doctor that has told me that. I saw a dermatologist once when I had one of my huge rash flare-ups. It was there for about a week when I saw him. He told me it was too late to biopsy and that it has to be done right when it starts breaking out. The rash was all over my body when I saw him. I saw a neuro for a second opinion after my second big neuro issue. It was 6 months after the symptoms started. I had a rash then too at the time the symptoms started. He said it looked like shingles in the picture I brought in but there was no way to tell because the spinal tap had to be done at the start of the symptoms in order to show if there was varicella zoster in the central nervous system. I believe he meant infectious diseases in general.
I do believe ID doctors like this are few and far between. I was shocked that he was literate about lyme. I have been told in the past that it does not exist in this state either.
Patsy, what about getting the doctor to write an order now for a biopsy or spinal tap or whatever and then getting it done on an emergency basis when you have a flare? I don't know if this works, but it's a thought. Otherwise, it's always out of sync. I don't know why drs don't take this into account.
Jason, are you pursuing with doctors other than ID?
I am not diagnosed right now, but just took the Igenix test. I too have rashes all over. I have had 2 on my neck for the last month. My neuro saw it and the only thing he asked me was if I showed this to my endocrinologist. I told him that I had, but she thought nothing of it. I have no idea where the rashes are coming from. They have been present since I started having these strange symptoms, which was last year. You mention varicella and I know that I have had this vaccine. I wonder if mine could be shingles as well.
ID really didn't say anything. I didn't have a rash when I saw him. One time the derm PA said "Oh that's poison ivy". I don't think so since I had the same rash at Christmas time with a foot of snow on the ground. Also, many of my rashes were/are on non-exposed skin areas like my stomache which is not typical of poison ivy. Another derm years ago said he didn't know what it was but that it was too late to biopsy.
"Rash" is such a nice broad word, covering a lot of territory, like the words "food" and "clothes" -- in other words, pictures are needed to know what the rash looks like, but doctors I took my photos to would barely glance at them and certainly weren't interested.
So, I started googling things like 'lyme rash' and 'bartonella rash' and then clicking not 'web', but 'images' at the top of the google screen. Some really interesting stuff pops up. For example, I had read about Bartonella's stripey rashes, but didn't understand till I saw a photo.
I get rashes almost exclusively on my face -- pinkish on low forehead between my eyebrows, and scaly red more defined spots in various places over the bridge of my nose. Before my meds really kicked in, my cheeks and nose and low forehead looked rough and scalded. I think now that I had Bartonella rashes on my back, but my dr said I tested negative for it; we'll be talking about that again at my next appointment.
I think the doctors want objective evidence, things they can see, like rashes and test results. Unfortunately, the Lyme+ bugs don't play by those rules. Lots of people on these boards are getting spinal taps, but I read that Lyme doesn't necessarily show up in spinal fluid -- that's not where it likes to hang, so a negative test doesn't necessarily mean no Lyme.
The doctors are following the protocols they've been taught, and only a few of them are willing to look beyond. My best advice is to be proactive and tell your doctor your symptoms, show him/her photos of rashes, do your own research, and explain why your symptoms match Lyme or Bartonella or Babesia or whatever and ask to be tested for them. Yes, this is what your doctor is supposed to be doing, but if you don't have access to an LLMD, educating your doctor may be the best course of action.
As sick as I know you all are, *don't*give*up* -- keep putting one foot in front of the other and looking for effective treatment. This Lyme is a slippery customer, but fighting it is worthwhile.
My dr. originally said it appeared that I just had a skin rash but sent me on to a dermatologist. Dermatologist said wow you have a rash here is some ointment it should get better.
My rash was on the knuckle of my pointer finger left hand and the target was on the knuckle and the rash extended up my hand and down my pointer finer, it was really scaley. I still have a picture of it from 2002, it is no longer around but I still have the scar on my knuckle. I will try to scan it and add it on see you guys can see it.
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