I am currently looking for a Lyme-literate doctor, but I've posted that on the other forum.
Can anyone give me a brief outline of suggestions for what to do next in my situation? Please PM if needed...
I'm a 40 year old male. I've had symptoms of fatigue, malaise, random bilateral muscle twitches, depression, and bilateral arthritis. These all came on after flu-like symptoms. I was in bed for two days with a headache during the "flu". It is then that the pain started. It affects both knees mostly, but also my hips and elbows. I'm an avid hiker. I hiked in California and Oregon this summer but I have no memory of a tick bite or rash. I've had no fever, to my knowledge. I tested negative for RA and by Complete Blood Count and TSH are currently normal.
I have no family doctor right now, so I went to an Urgent Care and talked the doctor in prescribing me a 10 day course of doxycycline and running a Lyme blood test. He ran the Western Blot. They used Quest Diagnostics lab. It came back "negative", but I demanded to see a paper copy of the lab results. I was unreactive on all IgM bands, and reactive on one IgG band, band 30. The test used had 10 IgG bands (18, 23, 28, 30, 39, 41, 45, 58, 66, 93) and 3 IgM bands (23, 39, 41).
I can't say I feel measurably better on the dox, but it's only been a few days. My script runs out next week. I still feel bad. Twitches have mostly subsided, but arthritis is still there. I feel like I've aged 25 years overnight, especially when exercising.
1. Would my CBC be normal if I currently had Lyme?
2. What does having a single reactive band (band 30 of IGG) really mean when symptomatic?
3. Does this symptom constellation seem consistent with Lyme?
4. Is 10 days of doxycycline enough to do anything?
5. Other than finding a Lyme literate doc, can anyone recommend further steps I can take to clarify this potential illness?
6. I really had no say in which Lyme test the doctor ran. I got the feeling he was not very confident about how to proceed. After the fact, I've gathered that the ELISA test is the usual first step. Does anyone foresee me having insurance issues because he chose the Western Blot test? I have Humana...
Thank you very much!
Posted by Judie (Member # 38323) on :
Gosh, I'm sorry you're going through this. I know that panic to find out information ASAP. This illness can be frightening.
I know SEVERAL people who had the symptoms you described and didn't get any positive bands after doing several tests (eventually some DID get a positive but it was a year or two after infection and done with a challenge test).
Even 1 band means you were exposed to Lyme from my understanding. These "typical" tests that the docs run aren't very sensitive, so it's GOOD that you got at least one bad.
Here's an excellent post on how to find the appropriate doctor. I found this very helpful at the beginning of my search (lots of great info on this site too).
These are the questions I can answer (I'm sure someone can chime in for the others):
"1. Would my CBC be normal if I currently had Lyme?"
Yes, for me it was. All my typical tests came back normal. Even my WBC.
It's sooooo important to get tested for co-infections too including viral infections. When I saw my first LLMD, the lab drew 18 viles of blood (I went to a regular lab). I had been on antibiotics for a month and ALL these things I never knew about came back positive.
"3. Does this symptom constellation seem consistent with Lyme? "
Yes
"4. Is 10 days of doxycycline enough to do anything? "
Yes and no.
No, it won't do much to knock out the infection. You need a combo of antibiotics.
Yes, in that it would be the beginning of doing the "challenge" test. Your body stops making antibodies to Lyme EVEN WHEN YOU STILL HAVE IT. This happens for various reasons (the lyme hides in your tissue, your body just gets burned out and stops making the antibodies, etc...).
This is why so many tests come up negative. I took antibiotics for a month BEFORE doing the blood work. My lab tests were positive after this.
"5. Other than finding a Lyme literate doc, can anyone recommend further steps I can take to clarify this potential illness? "
I'd read the information on the ILADS website and watch "Under Our Skin." This shows the worst cases of Lyme, so it's very sad BUT is also sooooo informative about the controversy over proper medical care.
"6. I really had no say in which Lyme test the doctor ran. I got the feeling he was not very confident about how to proceed. After the fact, I've gathered that the ELISA test is the usual first step. Does anyone foresee me having insurance issues because he chose the Western Blot test? I have Humana..."
Depending on the codes the doc uses, insurance may cover the testing. That's the big issue--finding a doc to order ALL the tests you need. You will need way more than the Western Blot.
For me, insurance DID cover the tests. My doc had to put in the right codes for it though.
Posted by Judie (Member # 38323) on :
I was still on antibiotics when I did the challenge test and it was still positive. I know some docs want you to do antibiotics for a month, then stops and wait 2 weeks to do the test.
Here's some basic info on Lyme which I think is helpful:
He is a saint and I show this to help illustrate how MD�s have been prosecuted so normal MD�s shy away from doing anything but following the flawed IDSA guidelines.
Posted by t9im (Member # 25489) on :
Hi LRM:
I don't believe band 30 is considered specific to the Lyme Borrellia. I have read conflicting opinions on whether it is an antigen reading to the same proties band 31 targets.
Anyway I believe this at the least indicates a bacterial infection.
The WB you received is the National Institute of Health standard kit. A specialty lab would have run more bands (31 & 34) and reported if there were any indeterminate readings.
When our daugher was first diagnosed (we went 8 months from MD to MD and respective childrens hosipitals) with exposure to lyme she was positive 30 and 41 (still not enough to be considered positive but we were at a LLMD).
From an insurance standpoint you should be fine. It is only if there is long course treatment you will run into issues (which is probably your next step in setting up an appt. with a LLMD).
10 days of doxy is not enough. Even if the right level in your blood it should be for 3 weeks (note the guidelines in my previous post are 6 weeks).
Good luck contrary to the Infectious Disease Society Guidelines this is not a quick easy disease to erridicate.
Posted by t9im (Member # 25489) on :
One other point early in the discovery phase of the disease one positive band with symptoms was considered significant in the lyme diagnosis.
Alan Steere wrote two papers on this (86 & 88). Unfortunately by 1993 he felt the disease was being over diagnosed and over treated.
He wrote a "peer" reviewed paper on this and then in 1994 (with Dressler and Engstrom) developed the CDC reporting criteria, which in 2000 were adopted into the IDSA treatment guidelines.
I believe I can safely say this has made life difficult for all on this site.
Posted by t9im (Member # 25489) on :
Now there is another side to the story but we learned the hard way there are flaws in the research below.
Unfortunately, band 23 is lyme specific. You have lyme. I had your same bands (23, 39, 41). I have lyme, bart, babesia, myco, plus more. You never know what came along with your tick bite.
You might want to read the book "Cure Unknown." It explains the lyme controversy quite well, and it's a really good read.
It's more important right now that you find a lyme literate doc, fast. Ten days of doxy isn't nearly enough. And the dosage you likely were given is not what lyme literate docs give (LLMDs). They give a higher dose.
Also, the correct diagnosis of lyme is a clinical one. Try to get a doctor who is ILADS educated (International Lyme and Associated Diseases Society). IMO, they are cutting edge. You can find one at www.lymediseaseassociation.org
I would ask to get on their cancellation list, as most lyme docs are backed up several months. I did that and was able to be seen in 3 days.
Also, there is an award winning documentary on lyme called: Under Our Skin. It's a free download below.
There is also a ton of info here on lymenet for you to read. And the search button below "POST A POLL" is a helpful tool for finding info.
It says that if you have one positive band (and it is considered a significant band for lyme) and if you have lyme symptoms, then you have lyme.
You are positive on band 30. That is a significant band. You have lyme symptoms. So, you have lyme.
Your doctor did you a great favor by ordering the Western Blot instead of the junk Elisa test. Good for him, and thank him for doing so. He stuck his neck out for you when he did this.
So, you can confidently go to a lyme doctor and get help for your illness.
Your insurance will pay for the Western Blot, even though the Elisa was not done first. WB is a covered test. End of discussion.
Heck, my ear/nose/throat doctor ordered a Western Blot on me recently. So, that shows that some info regarding the proper testing for lyme is getting out there.
The CBC will be normal with lyme. So will most other routine blood tests. That's why I went undiagnosed for 10 years before a doctor thought to test me for lyme. (I saw no attached tick and I got no lyme rash.)
The best thing you can do for yourself right now is read and study the Burrascano Lyme Treatment Guidelines found here:
Then, try to find a lyme doctor who follows the Burrascano protocol. Ask what protocol the doctor follows when someone recommends a name to you. You can also call the doc's office and ask if he follows the Burrascano protocol. It is the most successful lyme treatment protocol there is.
Become educated on what good lyme treatment looks like by reading the Burrascano Guidelines. That is the best thing you can do for your health right now.
The doc is the key to getting rid of this horrendous disease. The doc is the key.
Posted by Lymetoo (Member # 743) on :
Catgirl.. where does it say he had those bands show positive?? (23, 39, 41)
LRM.. be sure to read many if not all of the links provided above. Here is another to look over: