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Posted 11/23/2014 2:43 PM (GMT 0)
I have been sick for almost 2 months. I had chronic diarrhea followed by horrible headaches, trouble concentrating and dizziness. All tests for infection came back negative until I had realized I had gotten bit by a tick. The Lymes test came back positive and i was immediately put on Ammoxicillian and Flagyl. After two weeks of those drugs I became very ill. The diarrhea was unbearable so I stopped the anti-biotic treatment. Things improved but now, a week later, I got a huge headache followed by the inability to concentrate. I find it is at its worst when I am asked questions. I just can not stand being asked the simplest of questions. Any statement that contains a question mark makes my head explode. Has anyone else experienced this?

I'm so afraid of loosing my job at this point. I can't go back on my medication..it made me too ill. Is there a list of Lymes doctors for my area (Central Massachusetts). Alternative treatments? I'm at my wits end.
Posted 11/23/2014 4:43 PM (GMT 0)
Hi Altair401,

Welcome to the forum. Sorry you've had to join us here and sorry to hear about these health challenges. The thinking issues sound like they can be attributed to Lyme brain.

Be sure to read the post at the top of the page titled "New to Lyme". It will give you lots of info. Go to ILADS.org to request the names of Lyme-Literate doctors in your area. (Called LLMD on here.)

Just going off of what I've seen others say here, you may want to go back onto just 1 medicine instead of 2 at the same time in the beginning. Usually your doctor would introduce you to 1, then another after you see how you react to the 1st one. Recently quite a few people have posted that they have extreme reactions to the commonly prescribed Lyme med Doxycycline. Some have suggested that Doryx (just like Doxy) is somehow gentler on the stomach. Check with your doctor if there's a better match for you.

There are lots of alternative therapies. You can read through the posts; many people seek out Lyme-Literate Naturopathic Doctors (LLND) or herbalists to support their healing. There are many people on here who heal with herbs alone and no antibiotics, and people who combine both.

Start a new thread titled "Seeking LLMD in (your city) MA". People will send you recommendations.

Hang in there!
Maui
Posted 11/23/2014 5:05 PM (GMT 0)
Thanks Maui,

Its been challenging. Since October I pretty much couldn't eat anything without needing to run to the bathroom right afterwards. Just when that started to improve I was diagnosed with Lymes. I am not sure if Lymes has gastro issues associated with it but also add the neurological side of the disease and it is pure torture.

Unfortunately I am allergic to all -cycline drugs so doxy isn't an option for me. I will start a thread like you suggested and see if I can find a doctor in my area.

Thanks.
Posted 11/23/2014 9:44 PM (GMT 0)
A lot of Lyme doctors are saying that "low and slow" is the best approach for neurological Lyme. That is why it is best to find a LLMD or LLND.

I know exactly what you mean about questions!! When I was experiencing that symptom, my husband asked me a question. When I started to implode, he said,"It's just a simple question!!!" I said "No, there are no simple questions! They're all impossible." Somehow that question mark just casts a spell and you simply can't get the words out.

Don't be afraid to tell people that you are having cognitive difficulties. Most people will be understanding and cut you a break. Somehow that is easier to say than to answer the question!

The good news is that all of these symptoms, as disturbing as they may be, are reversible with thorough and complete treatment.
Posted 11/23/2014 10:11 PM (GMT 0)
Hi Altair!
Welcome to our community!
I'm so sorry for what you went through with the abx (antibiotics). What you experienced was likely a herx, or Jarrisch-Herxheimer reaction. It's due to too many toxins being in circulation in the blood stream at one time for the body to be able to deal with comfortably. As the Lyme bacteria die off, they release toxins, which is what drives our symptoms. We always encourage members to detox to help with herxes and for some symptom relief with the means suggested in the "New to Lyme? Start Here!" or other means that their doctors suggest to help keep this from happening, or at least as a means of having some control over it.

You may have also developed some gastro issues that you should have checked out as well.

Were you seeing a LLMD that had ILADS (International Lyme and Associated Diseases Society) training, or was it your Primary doc or an Infectious Disease doc? You will need to see an LLMD (or LLND - Lyme Literate Naturopathic Doctor) in order to get the treatments and the help you need. I do have a list of LLMD's in the Harvard area and one in the Plymouth area. If you would like their information, please send me an email by clicking on the blue envelope under my screen name. Please be sure to include the area that you are hoping to find a doctor.

I would encourage you to read through the "New to Lyme? Start Here!" thread that sits at the top of the forum as it's packed with important and helpful information, like detoxing suggestions (as I said above), symptom lists, information about probiotics and more.
Posted 11/25/2014 4:16 PM (GMT 0)
Than you, thank you for replying. This is such a lonely disease. I get support from family but they aren't walking in my shoes. And my primary doc I feel like is totally barking up the wrong tree. Because my primary or longest lasting symptom has been diarrhea, I am getting a colonoscopy next week. I am happy to get the test to rule out things like cancer etc but every time I mention Lyme and whether it is possible the Lyme is responsible for the diarrhea I get silence. Whenever I mention my symptoms, he asks if I have finished the antibiotics when i have already stated I stopped them due to them sending me to the ER with dehydration. We are mostly communicating through email because it is nearly impossible to get an appointment with him. He means well but I think at this point he is at a loss because I have refused to get back on the antibiotics because of how sick they make me. If it gets worse I will have to, but I'm just so frustrated and my brain is stuck in a fog so i can not think rationally regarding all of this. I guess my next step is to find the right doctor who knows how to treat this correctly.
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