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Met with my LLMD, More questions!
Hello Everyone,
I finally met with my LLMD this morning. This is the first time I actually met with him and not his assistant. He was totally cool. Anyway, after examining me and pushing on every part of my body to see what hurts (nothing did) I asked him do I really have Lyme? Because I have none of the normal symptoms.
He did say that only Band 41 came back positive on my Western Blot which is NOT a Lyme specific band. However, he looked at my tongue and saw that I have thrush and said that is a symptom. I was wondering though, can't I get that from the antibiotic? Because I know they tell parents to watch for that in their kids when they are on antibiotics.
Anyways, he told me to go outside and jog a nice leisurely lap around his building (it's small). He said my heart rate should be around 85-90. If it was higher like in the 140s, I most likely have Lyme because it does something to your heart? (I forget the name he said). Anyways, mine was 144! I thought I was going to die! I STILL can't catch my breath from it and it's been over an hour.
My doc said that was his only symptom when he first got Lyme. He couldn't catch his breath. So he had me do blood work and is sending it to Igenex but since I'm on the doxy, I guess we still can't be entirely sure of the results.
He said he is about 90% sure I have Erlichia? (spelling?) based on my symptoms. But could the high heart rate be caused from erlichia too? Or not having worked out and just laying in bed all the time since May?
He is keeping me on the 200 mg doxy/day until my blood results come back and he said based on that, he will probably double the meds and hopefully get me up to 600 mg/day. I DON'T think I am going to be able to handle that. He said I should expect to be on the antibiotics for at least 6 months.
Also, my main symptom is dizziness and I know doxy can't reach the brain which is where I think a lot of mine are.
Does this sound like a good treatment?
Thanks!
I finally met with my LLMD this morning. This is the first time I actually met with him and not his assistant. He was totally cool. Anyway, after examining me and pushing on every part of my body to see what hurts (nothing did) I asked him do I really have Lyme? Because I have none of the normal symptoms.
He did say that only Band 41 came back positive on my Western Blot which is NOT a Lyme specific band. However, he looked at my tongue and saw that I have thrush and said that is a symptom. I was wondering though, can't I get that from the antibiotic? Because I know they tell parents to watch for that in their kids when they are on antibiotics.
Anyways, he told me to go outside and jog a nice leisurely lap around his building (it's small). He said my heart rate should be around 85-90. If it was higher like in the 140s, I most likely have Lyme because it does something to your heart? (I forget the name he said). Anyways, mine was 144! I thought I was going to die! I STILL can't catch my breath from it and it's been over an hour.
My doc said that was his only symptom when he first got Lyme. He couldn't catch his breath. So he had me do blood work and is sending it to Igenex but since I'm on the doxy, I guess we still can't be entirely sure of the results.
He said he is about 90% sure I have Erlichia? (spelling?) based on my symptoms. But could the high heart rate be caused from erlichia too? Or not having worked out and just laying in bed all the time since May?
He is keeping me on the 200 mg doxy/day until my blood results come back and he said based on that, he will probably double the meds and hopefully get me up to 600 mg/day. I DON'T think I am going to be able to handle that. He said I should expect to be on the antibiotics for at least 6 months.
Also, my main symptom is dizziness and I know doxy can't reach the brain which is where I think a lot of mine are.
Does this sound like a good treatment?
Thanks!
Doxy CAN reach the brain because it's got a small molecular weight.
But I think that the other poster meant was a drug that's called a 'cyst-buster' (Flagyl or tindimax) should be added to the drug.
Some doctors believe in the usefulness of a 'cyst-buster' (Dr. B. is certainly one) but others (Dr L for one) don't find that to be true. Perhaps Elleon's doctor doesn't either, but we'll wait to see.
I achieved a long lasting remission without Flagyl and only relapsed when I moved to a state where I can't get treated for Lyme.
But I think that the other poster meant was a drug that's called a 'cyst-buster' (Flagyl or tindimax) should be added to the drug.
Some doctors believe in the usefulness of a 'cyst-buster' (Dr. B. is certainly one) but others (Dr L for one) don't find that to be true. Perhaps Elleon's doctor doesn't either, but we'll wait to see.
I achieved a long lasting remission without Flagyl and only relapsed when I moved to a state where I can't get treated for Lyme.
Doxy can't reach brain? Is that true. Most my symptoms are there as well. Hope that is wrong. Glad you got a good doc :)
Yeah, I can run and feel fine except my heart beat is super fast. Don't know if that's the Lyme or the not exercising for the past 6 months when before that, I was training to run in marathons.
He didn't mention anything about a cyst buster or what he's testing for. I go back in a month when my blood work from Igenex comes back so hopefully I'll know something then.
He didn't mention anything about a cyst buster or what he's testing for. I go back in a month when my blood work from Igenex comes back so hopefully I'll know something then.
Did he test for co-infections too? If I jogged I would have passed out after being in bed for so long so good for you for being able to do it.
He is good on the doxy but you will need a cyst buster with it for when the Lyme goes into cyst formation and if you have co-infections, they will need different abx.
Feel better!
He is good on the doxy but you will need a cyst buster with it for when the Lyme goes into cyst formation and if you have co-infections, they will need different abx.
Feel better!
Yes, he does seem to know the disease. He had Lyme when he was younger and got it into remission for a long, long time. He said he got bit more recently by an immature tick and got Lyme and ALL the co-infections and it's really hitting him hard this time.
[...]hopefully get me up to 600 mg/day. I DON'T think I am going to be able to handle that. He said I should expect to be on the antibiotics for at least 6 months. "
"I should expect to be on the antibiotics for at least 6 months."
That sounds about right according to ILADS and Dr. B's guidelines. If you can't take 600 mg doxy then try to aim for 400 mg doxy.
I like the fact that he said 'at least' 6 months. Sounds like he knows the disease.
"I should expect to be on the antibiotics for at least 6 months."
That sounds about right according to ILADS and Dr. B's guidelines. If you can't take 600 mg doxy then try to aim for 400 mg doxy.
I like the fact that he said 'at least' 6 months. Sounds like he knows the disease.
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