posted
So thus far I have seen a Lyme Specialist who prescribed me a bunch of antibiotics.
My regime looks like this: 1000 mg of Biaxin, 200 mg of Minocycline, Nastatin (to hold back yeast) 1500 Mepron (due to swallowing and jaw issues supposedly caused by babesia) and 1.2 million unit injection of bicillin LA every 3- 4 days.
Along with this the neurologist I was seeing through Kaiser prescribed xanax 2mg a day and prozac 20-40 miligrams a day. During this time period I also weaned off of dilodid for pain which was about 4 miligrams a day (which I did not need anymore due to less pain).
I have been taking these drugs religiously since end of April 2006 and soon after I seemed to feel better. I got my energy back, my shoulder tightened up and started to feel normal again. I was able to go surfing and play soccer again; I went from feeling 30% to about 70% of feeling normal. The muscle twitching even decreased, let just say it seemed like Lyme was the culprit.
The swallowing issues remained and a few other issues cropped up such as TMJ (jaw cracked about 7 times a day and the left side still felt weak but not as much). Tongue issues decreased as well but did not completely go away.
Now over the last two months I have degraded rapidly. I went for a 15 minute jog on the beach and when I cam back my side jaw felt very weak like it was hanging off. Then all of my worst symptoms came back with in that week, muscle twitching all through my body, jaw weakness (happens very rapidly after talking, this is one of the worst symptoms), major tongue problems (seems to cramp up and get weak very easily now and has grooves down middle now), limb type jerks (clonus?), I have also developed some sort of gland or node that swells and goes away in my left armpit.
My questions are: -Why does a combo of xanax and pain killers help minimize symptoms?
Why after all those months did that creep back up on me?
I just added the mepron recently like about 2 weeks ago but it has had no effect on jaw or tongue issues thus far, how long does it take to work usually?
Any other input would be very graciously welcome; my work is suffering due to symptoms increasing, I have a very difficult time focusing and speaking in meeting due to jaw and tongue problems.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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posted
So, did you just start the Lyme meds two weeks ago? In the beginning of your post, it sounded like you've been taking them since April 2006 continuously. Did you take them, then stop at some point?
I'm confused because you said you only started the Mepron a couple weeks ago.
That might help me answer your question.
Sorry it feels so bad ... I can relate.
My jaw used to crack EVERY time I moved my mouth ... thousands of times per day. I have been going through TMJ treatment, first a splint, now braces. It NEVER cracks now. Doesn't sound like you necessarily need that, but I don't think TMJ issues are uncommon with Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I have only been on Mepron for about 2 weeks and the other drugs sonce April 2006. Sorry my brain is not so clear today.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Luke,
I do not know, but the only thing I can think of and I am not a doctor just a fellow lyme patient, is maybe the Babesia infection was coming out in the last two months? Maybe you are herxing from adding in the Mepron?
Call your LLMD and let him/her know how you are feeling okay. And I hope you and your doctor figure out exaclty what is going on and you feel better soon.
Hope the brain fog clears up for you.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
I agree that it will be best to ask your LLMD about the symptoms increasing. If you've been on the same meds for this long, maybe it's time to switch them around a little.
You've got two of the borrelia forms covered ... you might benefit from Plaquenil, it's a mild cyst buster (I believer Flagyl is much stronger). My LLMD just made that change in my protocol.
I'm on a similar one to you ... but amoxy instead of bicillin. And we just stopped the mino for Plaquenil. I also take Artemisia for the babs. My LLMD switches it around every once in a while, but the Biaxin, Mepron, Artemisia, Nystatin stays the same.
I agree that the babs could have come out more as you treated the Lyme and that you could now be herxing ... but the LLMD needs to make that call.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Luke,
I'm really sorry to hear this. I had been so inspired when you posted about your improvement and I'm sad to hear that you are struggling again.
I believe you and I see the same LLMD so maybe we will run into each other at the office and can chat.
I am going to throw out one other idea just as a thought - but obviously talk to the LLMD.
Has he considered Bartonella with you?
The reason I say is that I developed severe myoclonus (the jerking uncontrollable movements) more than two years into Lyme treatment. Also developed tremors, the twitching which had almost gone away worsened terribly. This happened just before I started Bart treatment.
My Bart tests did not turn positive until the third test although we suspected it because of all my central nervous system symptoms. But also, all along, I had burning throughout my body so my nerves are terribly affected by these diseases. It doesn't sound like you have that same situation. I developed tingling about the same time as myoclonus and tremors.
The swollen lymph node you mention is a classic Bart symptom, but it could also just be a lymph gland getting clogged from all the toxin die-off.
None of the medications you've been on would treat Bart except Biaxin.
I hate to even mention yet another tick-borne disease when you're already dealing with Lyme and Babesia. And I certainly hope I am wrong. As others have posted, maybe you just need a cyst-buster.
But your description of the myoclonus and lymph node made me want to at least mention the possibility of Bart.
Do you ever get sore soles? Tendon aches? These can be Bart.
My only guess about the pain medication and symptom reduction is that it may break the cycle of nerves or muscles that are spasming or whatever, at least temporarily.
I know how horrible it is to have symptoms like these and try to function in a meeting. I deal with that, too, and have had to turn down much work because of it.
I hope you will be back to surfing soon!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Thanks for the replys everyone. Its just a downer seeing I dont feel sick I just have pains, weakness, and muslces cramping and twitching.
You guys are great and thanks for the input again. Being only 32 years old its tough when i cant do stuff with friends and family.
I wonder if i should get tested again for all infections again. See what is going on, maybe something will come up.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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