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1st appointments at Lyme doctor

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Posted 11/13/2014 6:31 PM (GMT 0)
HI, so I went to my first appointment with my Lyme doctor. He mentioned that he wanted to start me on doxy, but I told him that my main symptoms are GI and I have a very sensitive digestive system. Then he started talking about going right to IV abx, and that kind of scared me. I asked him if he thought insurance would pay for that. He said probably not as a first abx. He ended up putting me on mino 100mg 2 x per day along with a very good probiotic. He doesn't want me taking anything else at this time because of my sensitive system. I asked him specifically about a biofilm buster. He said he will add that after we see how I react to the mino. He wants to keep a close eye on me and I have another appointment in 2 weeks. He said that I will do well if I can tolerate the treatment. So what the heck does that mean? What if I can't? I know I need to stay positive! 

I started the mino yesterday and I am pretty sure it is causing mild nausea. If it doesn't get worse it is something that I can handle if it will make me better. I just took my 3rd dose.

So do you think the nausea will get worse? What can I do to help with the nausea? I am drinking peppermint tea and that helps. I take L-glutamine every morning and of course the probiotic. It seems to be the worst when my stomach is empty. What I am most concerned with is, is this damaging my stomach. I have spent a long time working to repair my stomach. Is this something that will go away after a week or so of being on the abx?

Thanks for all of your help here.

Posted 11/13/2014 6:48 PM (GMT 0)
I know some on here will take it with a little food to protect their stomach, so hopefully they'll chime in. What time of day do you take your probiotic? Taking it at bedtime a couple of hours after taking meds will allow it to get established more than it would taking it during the day. It's nice you have doctor who listened to your concerns and is being cautious with treatments. I wonder if anyone has started with IV abx first thing.
Posted 11/13/2014 6:58 PM (GMT 0)
When I started on abx, I followed the label, take on empty stomach. It tore me up.

Then, my dr informed me to take it with food. Maybe call and ask? This could be helpful, especially if you have stomach issues.

From all I've read, the dr wanting to see how you do first, is good. One step at a time,,, each person is unique in how things could affect their system. Slow and steady is most often a good rule of thumb.

Good luck, keep posting with questions, results, etc.
Posted 11/13/2014 6:59 PM (GMT 0)
So far I am taking the mino with breakfast and with dinner. The pharmacist said not to take it with dairy, so I don't. I take the probiotic with lunch. Do you think I should take the probiotic at bedtime, with or with out food?

Also, my doc said that my lyme test was very positive and actually made a kind of face while looking at it, like holy $hit face. I don't know why my signature is not showing up? Then you could see my test results
Thanks!
Posted 11/13/2014 7:01 PM (GMT 0)
Thanks breaking free. I guess slow and steady is good, but geeze, I want to get on with it now!!!! Lets get movin if you know what I mean. It is good the doctor is slowing me down because normally I go a little to fast with things.
Posted 11/13/2014 9:26 PM (GMT 0)
Hi Dancingbear

From looking at your IgM it looks like the good doctor is taking it nice and slow as he doesn't want you to keel over from the Herx effect. When did your symptoms start? From your IgG it looks like your initial tic infection might have been fairly recent?
Our your immune system just STARTED to finally kick up some dust.
Posted 11/13/2014 10:06 PM (GMT 0)
Dancingbear, have you read through the "New to Lyme" thread at the top of the page? If not, you should so you can learn how to detox since being on abx can cause herxing, which makes you not feeling very well. That could be the cause of your nausea. It's your body reacting to the die off. That's why your doctor is starting you out slowly, so you don't have a strong reaction. Patience is needed with this infection and there is no quick fix, unfortunately. The less time you've been sick, the better, though. You can also learn about improving your diet while fighting this, which should help quite a bit.
Posted 11/14/2014 3:09 PM (GMT 0)
kentJ- Thanks for your response. I have really sick since September of 2012, but I think I could have been bitten in 2006. I had mild symptoms then that could be lyme. But really, I am not sure. I know I was infected between 2006 and 2011.
Garden peace- thanks for your response also! I have read the new to lyme, but I could take a little more time with that. My nausea comes around 3 or 4 pm and lasts until I eat. I am going to try having a snack around 2 or 3 today and see if keeping food in my stomach helps. It is good to know that it could be a herx. I just hope it is not damaging my stomach more! As for my diet, I don't think I can improve it any more. I eat no grains or sugar and only organic. No packaged or processed foods. My only exception is organic coffee 1 time per week. It is my "treat". Not very fun. But you are right, attention to diet alone has helped me a lot so far! I am in the best health of my life, too bad I feel like crap. People don't get it. I look healthy. I am glad I found this place. Thank you!
Posted 11/14/2014 4:42 PM (GMT 0)
I started on 200 mg a day of doxy. I agree to take it with food, just avoid calcium/dairy.

I eventaully (two months in) added in tindamax (cyst buster)

Now I'm on ceftin instead of doxy, tindamax, and now planquil. (Like 2,400 mg a day total)

So I really do agree to work up to it. I have a very sensitive stomach but it's been ok with me. Nausea is there but I also feel like the meds are working. Like all lymies I have good and bad days

I personally would not be ok with going straight to IV treatments but I know plenty of people have. I'm happy with the protocols my doctor has followed. I always thought I needed to be on heavy abx from the beginning, but once I started doxy for the first time it was rough and I'm glad I had an adjustment period. Now we're really being more aggressive. (and for reference, I started low dose doxy in July, just went more aggressive in November...so 4 months of building)

Finally, it's ok to get a second opinion. Do your own research and also continue to advocate for yourself.

ADDING: In terms of your insurance, contact them directly about IV meds and other prescriptions, blood work, etc. While it's not your doctor's job to tell you what insurance covers they should have their own standards on how they submit to insurance, how you need to do it, the paperwork they will provide, etc. I personally wouldn't be ok with the answer they gave you. My back up LLMD automatically submits bloodwork to insurance, no work on my part. But I do know that appts are not covered. This is also largely based on whether you have a PPO or HMO (if you can switch to a PPO I recommend it)

Post Edited (cappuccinocurls) : 11/14/2014 9:48:53 AM (GMT-7)

Posted 11/14/2014 5:55 PM (GMT 0)
Thanks Cappuccinocurls, I am surprised that you started on Doxy and did not have a lot of stomach issues. I have read that doxy is hard on your stomach. My doc first said doxy and then I asked him if he thought that would be too hard on my stomach and then he said that is can be. That is why we settled on the Mino. I am also not comfortable going right to the IV abx. It is scary. I want to try this first. Are ceftin, tindamax and planquil antibiotics?
Thanks,
Posted 11/14/2014 6:06 PM (GMT 0)
I had a "holy crap " face when I saw your results too. Theres no denying you have lyme disease.

If you take the probiotics at night bfore bed then they have at least 8 hours before you take antibiotics that kill all the good bacteria. During the day you could take some too.
Posted 11/14/2014 8:31 PM (GMT 0)
Girlie, that is pretty funny. I was actually feeling pretty scared at the doctors office with the face and the sounds he was making when he was looking at my results. I guess I did not realize my results were that bad. I have struggled and felt pretty crappy for a while now, but I don't feel as bad as others. I mean I function. I have a full time job, 2 kids, husband. Make dinner, go for walks, garden, take care of my Mom as much as I can. She was diagnosed with cancer a few weeks before I was diagnosed with lyme. I have to push thru most of the time, but I push and get things done. Then go lay down and have a good cry. :)
Good luck to you Girlie!!!!
Posted 11/14/2014 8:47 PM (GMT 0)
Dancing Bear - I've read that the more positive bands doesn't mean a worse disease state - it just means your immune system was functioning well enough to produce a good antibody response...making your diagnosis easier.

Good luck to you, too!
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