posted
Hello, my name is Emily. My hands are shaking right now. I was diagnosed with Lyme about 2 months ago and have been on antibiotics for the last two months.
Cefdinir - 300 mg - twice a day Azithromycin - 500 mg - once a day, five days a week Acyclovir - 800 mg - twice a day Levothyroxine - 75 mg - once a day
Here's my story - about eight months ago I started experiencing really severe symptoms. I had a horrible case of the flu and after that began experiencing dizziness, fainting, fatigue, pain in my head and neck, migraines behind my eye, muscle spasms, joint pain, blurry vision, and tremors. I went to many doctors, had MRIs and CAT scans, and the only thing that they found wrong with me was that I had hypothyroidism. They put me on levothyroxine, and while the fatigue improved slightly the other problems got worse. I began to get more ill - brain fog, cognitive dysfunction, air hunger, palpitations, alternating feelings of hot and cold. I even traveled to China, and I don't even remember much of the trip. When I got back to the states, a friend told me I might have Lyme disease. I went to my general MD who did the standard CDC test and told me I was negative. I then went to a Lyme doctor and she diagnosed me with Lyme and did the Igenix tests and co-infections and found that I had Lyme and possibly babesia and bartonella (tests are not clear, but symptoms are). She also found I was positive for Mycoplasma, HH6, and EBV.
She put me on a round of acyclovir for about a month, the next visit she put me on cefdinir. What an improvement. While I herxed quite a bit for a the first couple of weeks, after that I began to feel much better. My dizziness and pain in the back of my head were gone. My pain was reduced. My fatigue was almost gone. However, taking the antibiotics regularly was and still is a problem for me, as they are oral and I have digestive issues. I take a good quality probiotic, but this does not prevent all the problems. My doctor told me if I was herxing to discontinue or reduce the dosage for a little while until the symptoms improve. So I've been doing that, and haven't been able to take the full doses of everything that I am supposed to. I also do other things - epsom salt baths and FAR sauna therapy - for the herxing and it helps a lot.
Now I feel that I am regressing. I was doing really well, but my blurry vision, fatigue, migraines, and brain fog are all coming back. I am seeing her on Tuesday, but I am very worried. Are the antibiotics not working any more, and if so will she switch them? I don't want to go back to the way I was feeling before. I don't know if I have a choice in the matter. I am scared of what's going to happen to me, I feel sometimes as if I am going to die. I try to tell myself that I am going to be ok, that it's not something I will die from but suffer from. It's very hard. I live alone, my family has offered to let me stay with them for awhile, but they don't believe I have Lyme and that is not helpful for me.
Sorry to sound so sappy - I just hate having to go through this alone.
My newest thing is that a week before my menstral cycle, I get horrible migraines behind one of my eyes and temple. It is so bad that I get nauseous. I usually throw up and then the headache will go away. This has been going on since I got back from China four months ago, two months before I started antibiotic treatment. It is like clockwork - exactly one week before my period. I don't know if it's hormonal or related to lyme, but it's unbearable. I bought some pinella nerve cleanse, but haven't tried it yet. I want to know what other peoples experiences have been with pinella for treating stabbing migraines.
Any feedback is welcomed and encouraged.
Thank you!
Posts: 7 | From East Bay, CA | Registered: Oct 2013
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Hi Emily! I'm sorry you are going through this, but very glad that you found this place, since it was my savior when I was first diagnosed.
Sadly, two months is a very short time to really expect to be better with this disease. In fact, many times you WILL feel like it is getting worse instead of better with all these meds. (Herxing)
Your protocol sounds like you are in very good hands with your doctor, so good job on getting yourself in treatment.
Please stick with it. It will seem long and sometimes like you are losing ground, but treatment DOES work. I know this first hand. But it will sadly be quite a bit longer than a couple months before you will start seeing some reversal.
If any of your symptoms get too rough, please don't hesitate to call your doctor. Sometimes they can swap meds around or else can tell that this herxing is a good thing for you. Good luck and please keep us posted. Hugs!
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
I have babesia and I've been instructed to take artemisinin, but I'm very nervous to get started. I almost want to tell my doctor that I would rather take mepron.
Thank you for the post!
Posts: 7 | From East Bay, CA | Registered: Oct 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Emily,
I have been treating for 6 months.
I also get a flare a week before my period. The migraines begin again. Basically two weeks a month, lyme rears its ugly head. The week before my period and the week of my period.
Hopefully others will chime in about arteminisin vs. Mepron.
It sounds like you have a good LLMD.
I have found with myself, that the abx seem to be less effective against lyme after about a month.
Rifampin has still remained effective for me against bartonella.
Hang in there. You will find the right combo of meds and herbs that will help you win this battle.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Don't be scared. You're on the right path (you know you have it and are willing to do something about it). Treatment is not overnight, or anywhere close to it. It takes time to discover all the co infections, and even then, there are probably some we know nothing about.
No worries. Just keep treating. When you treat one co infection, another one often pops up. We are all different, and have to try different things until we find something that helps us, even if it's does just a little. Improvement for me has been slow, but I will gladly take it.
Lyme has a co infection that is easily missed: parasites. Testing for parasites is poor, but it's all the doc's have, unless you see an ART practitioner (they find them and treat). Whatever you do, don't rely on a negative test to determine whether you have them or not. IMO, everyone has them. They are part of this earth. Lyme patients seem to have a higher load, so we have to knock them back.
Check out THE PARASITE WARRIOR'S THREAD. It's loaded with great info.
Also, heavy metals play a big role in how we feel. Hopefully your doc will test you. If I were you, I would up my probiotics too. My first doc had me on too low a dose. I wish that he had told me to slowly work up to 400 billion per day. Fighting yeast is key.
Welcome to Lymenet! There is so much wonderful info here (happy reading)!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
A lot of the symptoms you said came back sound like babesia symptoms. It is of course good to start only one med or supplement at a time and to go slow, but when you treat only one infection at a time then the others that are not being treated become more active.
Hopefully when you add in the art so that you are treating both lyme and babesia at the same time you will start to see real progress.
Hopefully what you have is artemisinin and not just the whole herb artemesia. There is a big difference in how effective they are. Start with the art and you can always add in or switch to mepron later.
The G.I. symptoms could be lyme or babesia or bartonella. That is why you need to be alert to any changes of symptoms with changes in meds or herbs -- it usually takes trial and error to see which symptoms are related to which infection.
Hubby's docs always had him take any antibiotics in the middle of a meal regardless of whether the pharmacy instructions say to take on an empty stomach. He had gastritis several times and even a mild ulcer -- pretty sure bartonella was the culprit.
Be sure to read up on the side effects of your thyroid med. These infections do mess with hormones, but too high a dose of thyroid meds could cause tremors. Armour thyroid might be an option you might want to consider.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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