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» LymeNet Flash » Questions and Discussion » Medical Questions » first llmd visit today!

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Author Topic: first llmd visit today!
renny1985
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I saw the LLMD today. He was really nice and well educated on the subject-I first sat with his PA for about an hour.. she was also very nice and very well versed on lyme stuff. She took a symptom history and my goodness I have so many symptoms of lyme, who knew. She says she has seen many with GI symptoms in their practice. The doc came in and talked to me for awhile about the medical controversy surrounding lyme etc.

Anyways, he agrees I certainly have lyme and it is impossible to really say when the onset was. He believes it is highly possible.. even likely.. that all my GI stuff, my leg pain, the heart palps, dizziness, pins and needles in my hand, fatigue, etc (the list goes on) are lyme related. He also tested me for several co infections. I am starting the treatment tonight which I am SCARED about. It is doxycycline for 4 weeks twice a day 100mg. He usually gives 3X a day but because of my GI problems he is starting me a bit lower. He says we treat until my symptoms are gone because stopping before that is not good and can cause a relapse or a worsening of symptoms. eek. He says that if the GI reaction to the meds is SEVERE that there are other meds we can try that are slightly better on the GI tract but that Doxy is the best and most broad.

I am scared of the herx.

Any words of encouragment out there? Or just any info would be helpful. Thanks again for all your support.

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seibertneurolyme
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Hopefully your doc told you to take the doxy with food. Hubby's LLMD has him take his antibiotics with food because he has so many G.I. symptoms.

Most of hubby's G.I. symptoms seem to be from bartonella instead of lyme.

Good luck with your treatment.

Bea Seibert

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Sammi
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Make sure you do not have any dairy, magnesium, or iron products within two hours of taking the Doxy or it will not be absorbed properly. I agree about eating before you take it. Eat something substantial (and non-dairy) before taking it or it can cause severe nausea.

Avoid the sun also. You can get a severe burn in a short time even when wearing sunscreen.

Good luck with your treatment!

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TF
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I don't think much is going to happen in the way of a herx with that dosage.

I remember the fear--but the terrible herx never materialised.

I expect you will be fine.

I hope he told you to stay out of the sun. Doxy can give you a severe medication burn if you go out in the sun, and you won't have any warning, like skin turning pink first. It is not like that.

The burn is invisible generally, the first day anyway. You can eventually get tiny little bumps/blisters on the spots that are burnt worst.

And I agree to take the doxy in the middle of a full meal so you don't end up with terrible heartburn or reflux.

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Keebler
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-
Glad it went well. Also, stay out of the sun - even through a window. Doxy will cause burns.

A gluten-free diet may also really help your GI symptoms to subside.

You should do fine on a low dose at first.

Did your LLMD suggest certain supplements or a book or article to read?
-

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f13girl
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I assume your llmd advises lots of probiotics 2 hours apart from abx........
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renny1985
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Yes he said the Highest dose probiotic three pills a day 2 hrs away from the meds. I am going to start tomorrow because I am nervous and I have to be somewhere tonight and do not want to start and have a reaction. My LLMD suggested I read Cure Unknown which I just ordered. Thanks everyone for the info. I am scared but I am going to do it.
Thanks for the support.

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Lymetoo
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Don't fear herxing.. fear Lyme!

Welcome! [Cool]

--------------------
--Lymetutu--
Opinions, not medical advice!

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sixgoofykids
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Welcome!!

If doxy is too tough on your gut, try doryx. It's the same med, but easier on the gut.

Good luck!! Ditto on the probiotics.

--------------------
sixgoofykids.blogspot.com

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LymeXtu
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renny- I also started on Doxy 100mg 2 X's a day, on the third day I woke up feeling like I had the flu, severe headache,nauseous,body aches etc. but it only really lasted a day and then I began to feel better.

Then bumped up to 200mg 2 X's a day ( I did not have any G.I. issues with it ) all together I have been on Doxy three weeks, today a little over three weeks total and again I feel terrible another whole day of feeling like I have the flu and I read in Dr. B's guidelines this 3-4 week flare is common and should be expected.

Best of luck to you.

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Lymeorsomething
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I've never had overt sides with Doxy. I think that he's starting you at a lower dose too so that should lessen any bad sides.

--------------------
"Whatever can go wrong will go wrong."

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renny1985
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Thanks everyone., Just swallowed my first dose with a vegan muffin. I am hoping for the best but certainly have some anxiety. Your posts helped a lot. Thank you.
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LightAtTheEnd
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Hi, Renny.

I started doxy at 100mg twice a day. On day 3 I had a herx, and for 3 days, all I wanted to do was stay in bed, because I ached everywhere, like you do when you get the flu, though I don't think I had a fever.

For the next week, I felt a little extra achy and tired, but I was able to go back to work.

After that, I was back to "normal." After 1 month, I doubled the dose of doxy, to 200mg twice a day, but did not have a herx. 2 months later, I added Biaxin on top of that, and still did not have a herx, and now, after the 4th month, I am starting to see improvement.

So, you can herx on that dose of doxy. It's possible you won't, or it won't be very bad, if you do. It's possible you will improve immediately, or that you will not see any improvement for a long time and then it will come along fairly suddenly.

Don't panic, and keep in touch with your doctor if you start feeling bad--he can probably tell you how to get some relief, if you need it.

If you are having a herx, rejoice in the fact that the drug is working, and all those Lyme bugs are dying--as soon as they're out of your system, those ones can't hurt you ever again.

If you get a doxy sunburn, your skin may feel cold and tingly and not be red. I got that on the backs of my hands during a couple of long days of driving, and didn't realize it was a sunburn until I burned my fingers bright red. If you do notice the cold, tingly feeling--felt like I had just rubbed my hands with peppermint oil, especially after washing them--cover up your skin immediately.

I am still battling nausea with the doxy, after 4 months on it. My doc just gave me some carafate, which is helping. I have also had some luck with ginger capsules and ginger tea, and taking the doxy 1.5 to 2 hours after I eat instead of immediately after. Taking the doxy with other pills bothered my stomach more, so I take it by itself.

Good luck! Remember, this is how you get yourself well, so it's all worth it.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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Pinelady
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Make sure you are doing something to prevent yeast also.
Most take either Nystatin or Diflucan.

With your GI symptoms that is something to consider.

If you do herx bad electrolyte replacement can help a bunch.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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renny1985
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Do you do something to prevent the yeast prophylactically? My LLMD didnt mention this. Also, my infectious disease doc and neuro (who I saw before the LLMD) want to do a brain MRI.... can anyone speak to the benefit or point of this? I am leaning towards not doing it. They said they wanna see if the lyme has any effect on my brain and also to rule out other conditions that could be causing my leg pain and numb arm.
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sapphire101
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I took this same dose and had the worst neuro herx. It lasted the whole time I took it. It was also the first med I took for lyme. I have severe neuro lyme so hopefully it won't affect you the same way but I did want to tell you it can happen.

By the way, I am much much better now.

Sapphire

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dmc
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If you do a MRI be prepared for your non-llneuro & ID doc to label you with MS rather than Lyme.

They do anything to "prove" you DON'T have lyme.

I'm speaking from experience.

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renny1985
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Yea that is what I was thinking. I am really scared to get an MS diagnosis. Does anyone feel the brain MRI is necessary at this time?
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sixgoofykids
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If you're looking for some kind of disability, it might be worth getting an MS diagnosis even if you chose to treat it as Lyme. Lyme patients can have a tough time with disability.

I never had a brain MRI. I knew my brain wasn't right, it was obvious from my symptoms.

--------------------
sixgoofykids.blogspot.com

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renny1985
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I dont really have cognitive symptoms. They wanna do the brain MRI for severe leg pain and mild numbing/tingling in my hang/arm. I am not trying to get disability since luckily I am okay enough (some days) to push myself and get to work.
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Pinelady
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I consider us the lucky few. AT least we know the difference.
http://www.calgaryherald.com/health/Doctors+misdiagnose+Lyme+disease+researcher/2908675/story.html#ixzz0lB8lUDth

http://www.wtnh.com/dpps/health/healthy_living/new-ms-theory-being-tested-_3285147

renny I take Nystatin 4 times a day to prevent yeast. In addition to a probiotic and tx.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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KS
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As long as you aren't paying out of pocket for the MRI, I don't see the harm. It can either rule in or out other possible causes of your symptoms. It can be a long road treating lyme...one that often has us questioning our diagnosis, etc.
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Mariski
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I would also advise you to do the MRI as it could give additional information about your condition. It is possible that the lyme is affecting your CNS, which might show up on the brain MRI. Alternatively, the Dr. may be concerned that the severe leg pain and mild tingling in your hands and arm could be due to an autoimmune condition called Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) which may have been caused by the lyme. LymeMD has a discussion about CIDP on his blog. Although lyme and CIDP have similar symptons, the treatment is quite different, which is why it makes sense to investigate further. I just had a brain MRI about two weeks ago. It was really terrible because of the noise that the machine makes. But it only takes about 45 minutes and could provide you with very important information. Your neuro might suggest other tests as well. I hope it all works out for you.
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renny1985
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Thanks for the advice everyone. I just read a bit about CIDP. It sounds worse than what I have been experiencing, though I do have the severe leg pain radiating down my legs. It is intermittent though. The brain MRI insurance coverage ends on May 31 so I have some time to think about it. I guess it can't hurt. I just dont know how to navigate following the LLMD's treatment protocol but following the ID and Neuro's diagnostic recommendations? I feel very confused about this.. any advice?
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