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Posted 1/31/2015 7:51 AM (GMT 0)
Ended my prescription of rifampin and doxy Jan 3 and by the 7th I started getting headaches, insomnia and panic attacks. It's different this time though. The pain is more concentrated around my eyes. My panic attacks seem to be triggered while driving and usually from bright lights, loud noises and hyper sensitivity to normal odors. I stopped seeing the LLND because I feel like I may have been her first patient. My regular pcp wants me to see an infectious disease doc right away. Along with going back to the neurologist about my vision distortion. In the meantime I'm going to try the cbd oil mentioned. At least for the insomnia and anxiety. I have a feeling I'll be back on abx before long. The good news I guess is that I still have too much energy and ocd tendencies, so I'm managing all this along with work, family, etc. I'm worried my body will get sapped of this excessive energy and I will be left exhausted.
Posted 1/31/2015 10:38 AM (GMT 0)
If I were in your shoes, I'd reduce my aluminum load and then reduce the yeast in my GI tract.
Posted 1/31/2015 12:01 PM (GMT 0)
Hi Mascoe,

I'm really sorry you're going through all this.

Have you been detoxing? There is a lot of good detoxing information in the "New To Lyme? Start Here!" thread at the top of the page.

Have you had your adrenals tested?
Posted 1/31/2015 1:33 PM (GMT 0)
Bluebyou - Yes, been dry brushing and epsom salt/clay baths, coconut oil swishing. Took all the supplements LLND recommended for liver support, probiotics, etc. One thing I find weird is she had me on 200 mg doxy twice/day and 150 mg rifampin twice/day. I got really sick after about one week and she moved my doxy down to half, which seemed to help. My pcp said the infectious disease doc will want to retest all my blood work, so I will ask about testing my adrenals. The clonadine I'm taking is supposed to help with reducing adrenaline and it does help, but it's horrible for insomnia and makes me feel woozy during the day.

Georgia - I will ask about aluminum and yeast. I have mostly been eating meat and veggies.
Posted 1/31/2015 5:12 PM (GMT 0)
Sounds like you will definitely be back on abx before too long. From what you say here, sounds like they were working!

Of course, they won't be from the ID doc, who will tell you "... there's nothing wrong with you, buck up, it's all in your head! Here, take some Prozac." rolleyes

Doctors who don't see and treat Lyme patients shouldn't assume they know what they're doing with us. But professional arrogance is far too common in medicine these days. Was your LLND on the right track, do you think? Has he/she been mentored by an ILADS doc?
Posted 1/31/2015 5:45 PM (GMT 0)
Thanks Speyfisher, Lol, I have fought every single doc over antidepressants since my symptoms started over a year ago. I finally agreed to see a psychiatrist who agreed with me that I don't tolerate much in the way of psychotic drugs, so he put in my medical record that I am allergic to all of it and he put me on the clonadine which is really a HBP med and helps reduce adrenaline. He and my pcp are on board with anaplasmosis as the diagnosis based on my labs from Igenex and my clinical symptoms. I am very skeptical of seeing the ID. The LLND isn't for me. She wanted to change my thyroid meds even though my t3/t4 were normal. I've not had issues with my hypothyroid at all, so I told her that it was something I didn't really want to mess with while on abx. She also wanted to do some naturopathic treatments to help my life in general. I don't smoke, drink...I eat right and have a happy relationship with family, friends and work, so I didn't feel like going that route either. Anyway, I think there are two other LL docs in Maine that I should look into seeing.
Posted 1/31/2015 5:54 PM (GMT 0)
I'm not necessarily prejudiced against LLNDs or anything, but it was stuff like that which prompted me to find my current doc, who is a board certified internist AND naturopath AND has a degree in traditional Chinese medicine.

I needed his holistic perspective, but also needed the MD confidence for dealing with my cardiac issues aggressively and confidently, which the LLND I was seeing was downright timid about.
Posted 1/31/2015 6:41 PM (GMT 0)
Thanks Speyfisher, Lol, I have fought every single doc over antidepressants since my symptoms started over a year ago. I finally agreed to see a psychiatrist who agreed with me that I don't tolerate much in the way of psychotic drugs, so he put in my medical record that I am allergic to all of it and he put me on the clonadine which is really a HBP med and helps reduce adrenaline. He and my pcp are on board with anaplasmosis as the diagnosis based on my labs from Igenex and my clinical symptoms. I am very skeptical of seeing the ID. The LLND isn't for me. She wanted to change my thyroid meds even though my t3/t4 were normal. I've not had issues with my hypothyroid at all, so I told her that it was something I didn't really want to mess with while on abx. She also wanted to do some naturopathic treatments to help my life in general. I don't smoke, drink...I eat right and have a happy relationship with family, friends and work, so I didn't feel like going that route either. Anyway, I think there are two other LL docs in Maine that I should look into seeing.
Posted 1/31/2015 6:46 PM (GMT 0)
Timid is exactly the word I should have described her as. I feel more confident now about my reluctance and will search for a ll doc like yours. I've heard I may end up in NY or NJ, but if that's what it takes then I'll do it. Thanks for your input, I really appreciate it.
Posted 1/31/2015 6:56 PM (GMT 0)
smilewinkgrin

We got to work with whatever we can get, right?
Good luck to you, and don't let the self-doubt shake you up too much.

:-)
Posted 2/1/2015 3:07 AM (GMT 0)
I was diagnosed with anaplasmosis in April and then Lyme in July. I was on doxy for months, had an IV picc line for 1 month w/rocephin and then oral rocephin. I went off meds 2 months ago and was denied another picc line by my ins. company. I started having panic attacks and uncontrollable crying while driving to and from work. My sense of smell is so heightened and I am nauseous all the time. I have headaches daily, severe brain fog, depression, exhaustion and dizziness daily. My hair started falling out a few months ago. I was vitamin D deficient-registered 12 on my blood work. My infection rate is still high 2.37 after 8 months of antibiotics. I started adderall for the exhaustion and brain fog and it does help somewhat. The infectious dr I have been seeing told me I am in the 33% of her patients who do not get better. I have not heard from her since my picc line was denied. I spend most of my spare time in bed resting as I don't have energy to do much. I have called Columbia University in NYC and put myself on a waitlist for an evaluation. They are interested in studying Lyme patients. I am looking for a LLD in Albany NY.
Posted 2/2/2015 8:39 AM (GMT 0)
Mtlassor, my panic attacks happen mostly while driving too. I thought it could be motion triggering it, but I've also had them while sleeping, talk about freaking out. I've never mentioned my sense of smell, but yes I have that too. In fact all my senses are heightened. Especially lately with the return of my symptoms, light is a big trigger so night driving has been difficult. Fortunately the extra adrenaline keeps me going, but I have no idea how long that will last. Right now I am taking this energy to quit a few too many things I'm involved with, like dropping a few clients and backing off from volunteering so much. I have a fear my energy level will drop off suddenly and I want to be prepared. Another symptom I'm appreciating is that I've become much more "OCD" so taking these steps now is helping with that little issue I guess. To help me put some of this craziness into perspective I can't help but see a vision of me wearing a spandex suit with the ability to jump tall buildings and shoot webs from my wrists so I can swing all over town. The whole Spider-Man story fits a little bit with me because of my excess energy and heightened senses. It's silly, but the humor helps.
Posted 2/2/2015 9:10 AM (GMT 0)
Don't mean to hijack the thread at all, but SpeyFisher I have been looking for someone who is both an MD and uses Traditional Chinese Medicine. Can you PM the name of your doc? I didn't see your email listed. Mine is in my profile. Thank you so much.
Posted 2/2/2015 9:45 PM (GMT 0)
Thank you Mascoe1 for making me laugh! Humor indeed is needed......All of my senses have gone crazy. If the TV is too loud, it hurts my mind. I can't explain it, but it's all since I have been sick. I haven't felt energetic at all. I always worked 2 jobs. Had a full time travel job and waitressed on weekends. I had to give that up. I would welcome a burst of energy!!! I am going top start detoxing by taking baths and am going to find a good LLMD! I am also going to have a full blood panel done and have all vitamin levels and thyroid tested as soon as possible.
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