I had a follow up appt. with Infect. Dis. Dr. today. While I await my LLMD appt. Nov. 18.
He is dumbounded as to why I didn't respond to antibiotics.
Now he wants to test me for a virus (which I had done by PC Dr. and test was neg.)
He told me that people obsess too much over Lyme.
He seemed sort of genuine about Lyme (wants to watch "Under Our Skin" and asked me if I watched it".
He wants me to get well but his hands are tied since I didn't test positive and his office only tries once maybe twice with treatment.
He also said he doesn't believe in IV Therapy and it's the same as oral antibiotics.
I used the example of my neighbor's son who tested negative 10 times and orals did nothing but when he went on IV for a while he is fine now. He didn't know what to say to that.
He seems to want to learn about it more and even admitted that not much is being done with research.
He told me a story of a woman with Lyme for 14 years after going to her LLMD they could no longer help her and so she saw him and he could not help her either. Since she tested negative.
My heart go out to that poor woman!
I told him I don't think people obsess over it. We just want to get well.
He also said long term antibiotics is of no use.
Basically it was almost a waste of my time but he called in 500 mgs amoxicillian 3 times a day(last drug to try). Then that's it. He is hoping this will work.
Which will almost hold me over until my Nov. 18th appt.
I have one more day with Ceftin.
I don't need to do any more bloodwork for virus testing. As I don't think I will be seeing that dr. again.
He also thinks there is a lot of scamming going on and Igenex is a waste of peoples time and money since insurance doesn't cover it.
He talks about needing a positive test so when I bring up Igenex he says we are already treating it and no need to do that test and waste your money.
I guess I am lucky to get treated by him for 5 weeks so far (Doxy & Ceftin) and another 3 with the amoxicillian. Unfortunately the Doxy wasn't strong enough).
It would be easier if I had just one positive test!!!
I am afraid that the LLMD I see in Nov. is not going to treat me at all because of testing neg. and failed treatment so far!!
Posted by Keebler (Member # 12673) on :
- How do you define your "negative" lyme tests? The CDC criteria is not accurate in determining lyme. So,
Did you ever have a bulls eye rash after a tick bite? Any kind of rash?
What specific tests?
From which labs?
If Western Blot, were both IgG and IgM performed (again, at which lab)?
Did you have ANY positive or "IND" bands ? If so, can you post those?
Have you been tested for other tick-borne infections?
For any other chronic stealth infections? i.e. HHV-6, XMRV/HGRV, etc.? Cpn? ( www.cpnhelp.org ) -
Posted by Lymetoo (Member # 743) on :
What a duck!!
If you have not had a test thru Igenex, then stop worrying. With a GOOD LAB you can get REAL results. The other labs don't even test for all the bands.
So.. it's quite likely you could come up positive once you get the proper test.
Don't worry about anything except making sure the LLMD you will see is a GOOD ONE.
Moving this to Medical Questions where you will get more help.
Posted by Lymetoo (Member # 743) on :
Summer said,
"He is dumbounded as to why I didn't respond to antibiotics."
What do you mean by that? Because you herxed?? (felt worse?) .. or because you didn't feel any better? (same reason, actually)
You said you were given a low dosage of doxy ... and now he gave you a low dosage of amoxy. So of course, you "didn't respond." Makes perfect sense.
Posted by lou (Member # 81) on :
Lyme is a clinical diagnosis until the tests get better.
Posted by Keebler (Member # 12673) on :
Topic: Why do some test pos and some neg? -
Posted by Keebler (Member # 12673) on :
- "He is dumbounded as to why I didn't respond to antibiotics." ?
* For many, treatment can take one - three years, or longer.
* Lyme rarely is the only infection for anyone. Other tick-borne infections must be assessed and, if present, treated. Lyme treatment does not cover all the tick-borne infections.
* Support measures need to be in place to minimize the herxheimer reaction and stress on the liver and kidneys.. -
Posted by onbam (Member # 23758) on :