I am new here and heard this is a great place for help so i was hoping some here could help me. I got a positive igenex test in January, although a doc suspected lyme earlier. I am on the waiting list for a few LLMD's but i am not sure how long it could take as they just said they will call when they get to me on the list.
I recently was recommended a doctor to me who had lyme and someone in a lyme group said she was pretty good so i thought i would go see her before i see an actual LLMD and maybe at least get some treatment temporarily.
She ran some blood tests such as: Thyroid, blood sugar as i seem to be thirsty often, b12 levels, vitamin d levels, and the routine blood tests.
I also told her that i had found out from a doctor prior that i have two copies of the A1298C mutation. She didn't say too much about this. I also mentioned that i have reactivated EBV found on a test last year but she said she wasn't too concerned with that either.
She was going to start me on doxy, but i have what i think may be strep and so she changed her mind and decided to put me on Biaxin twice a day at 500mg. She told me that this was mainly to clear up the strep but is also successful in tackling lyme also.
I asked her about diet and she just said i should be on a gluten free low carb, low sugar diet. I should have asked about supplements and vitamins but i never did and she just told me to take vitamin d, She also never suggested a probiotic or anything.
I know most LLMD's suggest vitamins and supplements are vital for healing, but i would have no idea what to get if i was to look into this myself. Isn't that why LLMD's are vital as they can tell you what is best for you personally?
Also, it has only been 2 days on the abx and i do have lots of nerve irritation it seems. I get tingling, numbness, cramps, twitching, and pain specifcially in my arms, although my calf muscles often feeling tight and heavy and my feet get random vibration sensations and my legs get numbness and tingling also as well as random shooting pains.
So last night after taking the second pill i got this really weird burning sensation in my fingertips that lasted about 10 mins. The burning felt really hot and i have never experienced this before. Then after todays pill all my hand issues disappeared except for the stiffness feeling in them, but i randomly started to feel extremely achy in my legs, really weak achy knees, and i felt like both hip bones were severely bruised.
Later i started to get pain in the right leg only. It isn't a shooting pain but a constant painful type pain. I took a hot bath which while i was in it relieved this, but 10 mins after the bath the pain came back again, and i have never had pain in my leg like this before.
Does this sound like a herx? I am hoping it is although i am also concerned that this may be a side effect of the meds. I am really hoping when i wake up tomorrow it is gone. I emailed the doctor but i think she may just put it down to herxing...but i am feeling paranoid i am doing more harm then good. I guess it always concerns me when it is something new i have never experienced before and only happened when abx started.
I apologize that this post is so long, but i just wanted to include all info to give everyone a good idea of what is going on. I appreciate anyone who can help me.
Posts: 53 | From Texas | Registered: Apr 2015
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posted
My opinion.. and I've been around here quite a long time .. is that it could very well be side effects. I think you should contact your doctor and let her know.
Have you looked here at the list of side effects for Biaxin??
posted
Light sensitivity, severe brain fog, insomnia, anxiety, headaches, tingling, numbness, stabbing sensations all over body, tremors, eye pain.
Posts: 53 | From Texas | Registered: Apr 2015
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
I'm no doctor, and I really encourage you to work closely with your MD about this, but your symptoms scream bartonella, and I would say the Biaxin (which happens to hit Bart. pretty effectively) is really doing a number on the little buggers hiding out in your body.
Personally, I would say this IS a herx. But, like I said, I'm not a doc, so work closely with your MD, and if it doesn't subside a little in a few days, consider the possibility that you're not hitting it hard enough, or that your body may prefer a different drug to hit the Bart.
But, I have a feeling you will get just as strong a response from the other Bart meds, too.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
These symptoms do not sound like Biaxin side effects to me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
biaxin and doxy gave me horrible herxes but nothing like what you describe.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I have emailed my doctor but she has not yet responded. Not sure whether to continue or stop. It could have always happened and is just a coincidence that it happened on day 2 of abx but seems a little strange. Pain in leg started around 3pm yesterday and has been constant. Strange how it is only one leg and the leg feels extremely heavy and tightness and cramps in the calf muscle.
Posts: 53 | From Texas | Registered: Apr 2015
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
call your pharmacist. they know more than the doctors
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I don't like what you are describing is going on with your leg. I am concerned it might be something serious.
I suggest you read up on deep vein thrombosis (blood clot) to see if your symptoms line up with that. Here is a website just as an example:
If your symptoms line up with this, get to your primary doctor right away or go to the Emergency Room because this is a medical emergency.
If it is a clot, sitting in a tub of hot water could help it and that could be why it gave temporary relief from pain. But, you cannot treat this condition on your own.
Don't want to scare you. Check out the symptoms and see if they line up with your case.
posted
The pain has gone off for now, but i just took another pill. If it happens again i think i will definitely consider it. My symptoms don't really line up with those symptoms listed on the site. I don't have any swelling, warmth or discoloration in the leg. I am concerned too though. Still waiting to hear from the doctor
Posts: 53 | From Texas | Registered: Apr 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I hope you are reading the website correctly. You don't NEED to have ALL of the symptoms. Far from it.
Here is a quote from the first site:
"Half of all DVT cases cause no symptoms. If you do have any of the DVT symptoms below -- especially if they occur suddenly -- call your doctor right away:
•Pain or tenderness in one or both legs, which may occur only while standing or walking"
So, this site says that if you have ANY listed symptom you are to call your doctor right away. You don't need to have swelling, warmth or discoloration in the leg to have DVT.
To have continual pain in one leg is a concern.
Next site says:
"•Pain in your leg. The pain often starts in your calf and can feel like cramping or a soreness.
Deep vein thrombosis may sometimes occur without any noticeable symptoms."
This quote uses almost exactly your wording--starts in calf and can feel like cramping.
Just want to point that out.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I was recently diagnosed with lyme and bartonella. I am taking doxycycline 100 mg twice a day. I too starting having really bad pain in my legs about 3 days after starting the medicine. The pain is in my upper thighs and butt. Also ached all over with an awful headache for about 1 1/2 days. I was hoping it is a herx reaction as I want to kill the buggers as quickly as possible!
Posts: 2 | From New Jersey | Registered: Mar 2015
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