I started having joint pain in my fingers the last 3 weeks, and just received my test results from my primary care doc - Postive Ab, negative western blot. My doctor ruled out arthritis, and gave me the choice of taking doxycycline for 14 days or waiting 14 days for another test, since this could be a new infection. She did not test me for any other tick-borne diseases.
Any thoughts on taking the antibiotics for 2 weeks? This could also be an old infection since I have had a constellation of other symptoms for a while(not much joint pain, no noticable rash, but I may have been bitten on my scalp).
I have other Lyme symptoms - fatigue, brain fog, sleeping issues, etc. which could also be explained by my multiple chemical sensitivities or menopause.
Bonus points for recommending a Lyme-educated dr in the Boston MA area. My PCP said she could refer me to a rheumatologist, but I'm not sure that's the way to go.
Posted by TF (Member # 14183) on :
Sorry, I am not familiar with the lyme doctors in your area.
But, I can tell you that lyme often causes multiple chemical sensitivities and it can also cause false menopause. It caused a false menopause in me.
Once I got good lyme treatment, my "menopause" went away and I was declared pre-menopausal again. I have known other women who were attacked gynecologically by lyme, and they were also give the menopause diagnosis.
The lyme docs I know say that if you are going to start antibiotics before seeing a lyme doctor, it is best to take the antibiotics continuously up to the lyme doc appointment.
In other words, just taking 2 weeks of doxy and then waiting months to see a lyme doctor won't do anything for you.
But, if you start the doxy now, you will have to avoid the sun because doxy causes sun sensitivity in many people. This is not to be minimized. It causes a medication burn that is so nasty that nasty isn't a good enough word for it. People on doxy can get burned on their hands while driving. So, they are advised to wear cotton gloves while driving.
This is not a mild case of sunburn. It gives no warning. You get unbelievable pain and perhaps blisters.
The pain can recur any time you go in the sun, even for a few seconds. It lasted for at least 30 days for me. I couldn't even sit under our skylight to eat breakfast in my home. So, take the warning seriously.
AND, doxy must be taken in the middle of a meal. If you don't do that, you will get horrible reflux or perhaps vomiting, etc. So, lyme docs tell patients to eat half a meal, take the doxy, and then eat the other half.
Because of the sun problem, lyme docs try to avoid giving doxy in the summer. They give minocycline instead, or other lyme treatment.
If you have not yet done so, I suggest you read and study the Burrascano Lyme Treatment Guidelines found here:
This document is not an easy read because it was written to doctors to teach them about lyme and its treatment, but it will give you an education on this disease. And, you will learn what good lyme treatment looks like.
You say you have a positive Ab (antibody test) and a negative western blot.
If you have the actual test results, I suggest you post them here for us to see. You see, many non-lyme literate doctors tell their patients that their Western Blot is negative and in reality a lyme doctor would consider it positive.
Also, ANY positive lyme test is very significant. So, whatever that positive test was, it would be good for you to get the name of it (was it the EIA, ELISA, etc.) and take that result seriously.
Posted by GretaM (Member # 40917) on :
Agree with TF.
If you go to the Seeking area of this forum, you can post for a doc in your state or nearby.
A positive Elisa is like winning the lottery. There are far more false-negatives with that test, than false positives because of it's low accuracy (50% hit or miss)
A western blot shows bands that you respond to...if you don't respond to X amount of bands, the results will say negative.
What the test doesn't explain is that there are certain "bands" on the western blot that only lyme can make. And if your body responds to them, then your body has "seen" lyme bacteria before.
An LL will looks at the specific bands you responded to, NOT if you responded to X amount of bands.
Another important point is chronic lyme often shows up in IgM, not IgG as the average doc expects AND also lyme disables the immune system so badly, often one cannot mount a strong immune response and therefore is negative on the western blot portion of the test.
because of your past health history and positive ELISA, the best thing you could do is read the guidelines suggested, print out the guidelines on the ILADS website to reference to when you encounter doubt from others or yourself. (doubt creeps to all of us sometimes, especially when we are our sickest)
It's great that you are asking questions and gathering clues from your past health history etc.
Once you find an LL, and get adequate treatment, things will get better.
Posted by Judie (Member # 38323) on :
I also have MCS and was infected with Lyme later on.
My first main symptom was an increase in my MCS symptoms. I was having symptoms when I wasn't even around my triggers. That was my first sign that something was new.
Some Lyme doctors treat both MCS and Lyme. My MCS has improved since I started Lyme treatment.