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Noah2112
Regular Member
Joined : Dec 2017
Posts : 209
Posted 1/20/2019 2:19 PM (GMT -7)
Hey all, been a while since my last post. I hope you all are doing well.

Back in December my LLMD and I decided to put me back on antibiotics to combat bartonella (which we think is the cause of my symptoms). I'm on Azithromycin and Rifampin. I take boluoke in case biofilms are inhibiting treatment, and a good multivitamin to round out any nutritional needs I might be missing. The tingling and pain in my feet which had been getting worse prior to starting antibiotics again has already started to fade, all the pain is mostly gone and only a light tingle comes and goes now, so I think the antibiotics are doing their job. I have a few other minor symptoms that don't bother me much too, but the last major one that effects my life are the headaches. They're often in the back of my head/upper neck and sometimes manifest as a discrete localized pain, other times its more general. They come and go, but the past few days have been pretty tough regarding them.

I'm hoping that this is just a temporary setback, but even after I get back to my baseline my headaches still bother me more than I want. So here's my question: If you have experience with headaches could you let me know what helped? Experience with different medications would be helpful too. My neurologist told me that Gabapentin is an option he recommends in chronic tension headaches. He told me that if he had to classify my headache that's what he would call it. He knows that I've had Lyme+Bart problems and told me that systemic infections can cause the kind of headaches I'm describing (a welcome change of pace from non LLMDs).

I'm going to ask my LLMD on Thursday about gabapentin. Anyone have any experience with it? Even if it just provides symptom relief for my headaches that'd be a huge help. Without the headaches I think I could be living a pretty normal life right now, so my goal is to get rid of them however I can. It doesn't seem to interact with either of the antibiotics I'm on or have serious side effects in most cases so I'm tempted to at least give it a try.

Thanks for the help!
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37443
Posted 1/20/2019 2:30 PM (GMT -7)
I’ve tried Gabapentin twice and no success for my pain.

But I didn’t have headaches... and I was only willing to go so high in dosage. My LLMD said I should have continued to raise the dose.
I was also prescribe a second med with it - Oxycarb..,. Something like that - apparently together they can work well.

My LLMD has suggested I try lyrica as it can work better for some people when Gabapentin doesn’t.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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Noah2112
Regular Member
Joined : Dec 2017
Posts : 209
Posted 1/20/2019 2:36 PM (GMT -7)
Yeah I understand that gabapentin is hit or miss for people. I assume that my neurologist (who deals with a lot of headache and migraine patients) knows what he's talking about when it comes to headache medication. It probably wouldn't hurt to give it a try at least. I'll see what my LLMD says too.
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1681
Posted 1/20/2019 3:21 PM (GMT -7)
When my symptoms got to be intolerable I found gabapentin helpful for my headaches, sleep, and nerve pain. The trade-off was that it made me feel like a zombie. That said, I don't regret it, helped me when I really needed relief. I think LDN helped as well. I also sometimes take full spectrum CBD, that can be helpful.

Pretty cool that your neurologist is aware of these infections and that they can cause such symptoms.

My tension headaches and back of head pain were mostly related to babesia, has gotten better over time as I treated the infection. Constant crushing headaches have been the most debilitating symptom for me.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37443
Posted 1/20/2019 3:35 PM (GMT -7)
Sebreg - how long before the Gabapentin started working?

I gave it several weeks - both times - maybe I quit too soon?

I’ve been thinking (again) about buying a topical cbd/thc combo topical pain relief.
Although if my pain is CNS driven - not sure if rolling the pain reliever on my upper back would work.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1681
Posted 1/20/2019 3:38 PM (GMT -7)
It basically worked right off the bat for me, but doc told me to take it at 1200mg, 300mg in morning and afternoon and 600mg at night. So I think depending on what symptoms you are dealing with (for me bad nerve pain at the time), you need to go with a certain minimum threshold dose to see some effect.
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Noah2112
Regular Member
Joined : Dec 2017
Posts : 209
Posted 1/20/2019 3:43 PM (GMT -7)
I think my neurologist wanted me to start with a low dose, I've read that different people respond to very different doses. Hopefully I won't have many side effects! Obviously if they're worse than the normal symptoms then I won't keep taking it but it sounds like it's worth a shot. My LLMD and I think my headaches are Bart related. I've asked a few times about Babs but he says he doesn't think it's worth taking the medication for since I've tested negative twice and the only symptom I have that might fit is headaches. And since headaches are caused by just about half of all medical conditions, that's not very strong evidence.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37443
Posted 1/20/2019 4:03 PM (GMT -7)

sebreg said...
It basically worked right off the bat for me, but doc told me to take it at 1200mg, 300mg in morning and afternoon and 600mg at night. So I think depending on what symptoms you are dealing with (for me bad nerve pain at the time), you need to go with a certain minimum threshold dose to see some effect.

You’re off it now?

And do you have to wean off it?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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Georgia Hunter
Veteran Member
Joined : May 2012
Posts : 2230
Posted 1/21/2019 2:34 AM (GMT -7)
Headaches like you described are often due to one of three things, eye problems, neck muscle problems, or increased CSF pressure. Because of your situation and other issues, I'd focus more on eye problems than the other two. You need an eye exam to make sure there isn't anything physically wrong with them. Parasites can be bad about messing with our eyes and if that is the case, I'd focus my attention on any biofilm producing pathogens. (bartonella is not a biofilm producer.) That could help explain the neuropathy you have been experiencing as well.

Eye issue headaches can also be caused by melatonin issues. Melatonin is an antioxidant and when more pathogens are present in the blood than the immune response can deal with, it acts in a protective role to help eliminate charged particles and oxidative stress. If you want to talk about theoretical uses for melatonin, it is an indoleamine and could be used in the pH related intracellular deficiencies of cytosolic magnesium. Long story short, you may need more melatonin and you may need to avoid light for a longer period of the day. Perhaps a kitchen light over the sink is causing your problems. Either way, I'd find a way to "darken" my environment and see if I could increase my melatonin level.

As for gabapentin, it may be a temporary fix but it won't solve a long term problem.
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mareish
Regular Member
Joined : Mar 2017
Posts : 250
Posted 1/21/2019 5:10 AM (GMT -7)
Noah2112, The most effective drug I have used for headache is Fioricet. It has been a lifesaver.
Lyme CDC POS
Bartonella POS
Ehrlichia POS
CD57 30, then 12, now 64
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1681
Posted 1/21/2019 6:53 AM (GMT -7)
Yeah, gabapentin is not without its drawbacks for sure, but if it can help manage symptoms can sometimes be worth the tradeoff. Not a bad idea to start with lower dose to see if you can make do with a lower amount.

Girlie, I'm off of it now. I did have to wean, got some withdrawal but relatively manageable. Withdrawal runs the spectrum, some people have a heck of a time and for others it is no problem.
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saraeli
Regular Member
Joined : Jan 2019
Posts : 113
Posted 1/21/2019 7:09 AM (GMT -7)
This variety of infections has caused me many types of headaches, too, often debilitating and generally occurring for most of most days, to some degree. I do very poorly with pharmaceuticals, so there are many I have not tried. None of the triptans (like Imitrex and Frova) or beta blockers (like propranolol) worked for me. Mine also are triggered just terribly by barometric pressure drops. I see the top headache specialist neurologist in Boston (although she's not an LLMD, she very much encourages an integrative approach) and she's on-board with everything below:

What I found helpful were:
- Vitamin B2 and magnesium! These helped more than anything. Every day, and more if I know there's a headache trigger lurking. They reduced the frequency and severity of headaches of all sorts.
- Essential oils take the edge off many of my headaches better than I thought they would. I use a few drops of peppermint and frankincense, on my forehead, temples, and back of neck. (Always use essential oils topically in a carrier oil - coconut, olive, grapeseed, etc. - to prevent skin irritation.) Inhaling the scent can help, too, or placing it on a handkerchief nearby, or using a diffuser. There are many ideas online for essential oil combinations that help with headaches.
- Ashwagandha, an adaptogenic herb that I take in liquid form. It helps to balance my adrenal system and manage stress, and it lessens the severity and frequency of most headaches when I take it regularly.
- Staying very well-hydrated with water.
- Managing my circadian rhythm well. No napping, and the same bedtime and wake time every day, and turning off the blue light on electronics (or avoiding electronics) after dark. I am bed-bound right now, so it also means sleeping on a different part of my bed than where I hang out during the day, and using a full-spectrum light lamp since I cannot get outside. If insomnia crops up (curse these infections) then I take a tiny dose of melatonin (liquid, so i can titrate the dose) just before bedtime.
- No stimulants, including coffee, tea, chocolate, etc. No sugar.
- Moving my body, even just stretching each day, and making sure my neck alignment is healthy.
- Craniosacral therapy, acupuncture, and massage. (Note: acupuncture often brings on a headache behind my ear area, as those muscles relax and release stuff they don't release any other way, for me. The headache is a "healing response" and goes away within a day. I welcome it! But it can happen and be painful, so don't be discouraged by it.)
- Meditation and guided visualizations directed at pain. (The Kaiser Permanente wensite has some good free guided visualization exercise podcasts, and the chronic pain app Curable is helpful as well.)
- A mind-body approach to chronic pain, meaning exercises that help to re-train the neural pathways that cause many of our symptoms. (See the Curable app!)
- Epsom salt baths for detoxification and muscle relaxation.
- Ice packs on the head, for an active headache. Some say ice packs on the head with heat on the mid-back simultaneously.
- And anything that helps with herxing and detox - Alka-Seltzer Gold, lemon water, detox baths, dry brushing, massage, regular elimination, unprocessed diet, etc.

That's what comes to mind for now. Hang in there.
Sara (Lyme, ME, HPA axis dysfunction, POTS....)
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Noah2112
Regular Member
Joined : Dec 2017
Posts : 209
Posted 1/21/2019 8:39 AM (GMT -7)
I have had a recent eye exam, they're fine. I even saw a neuro ophthalmologist for a more comprehensive examination. I'm doing pretty well with vitamins although I may try taking some extra magnesium again, my LLMD is big on that. I'm good on the hydration front too, water is just about all I drink. Just about every other symptom seems to be making improvements, maybe I need to give it some more time. But in the meantime I'd like to try some medication to see if that could help. Without the headaches I'd be pretty much living a normal life right now. As it is I have to pace myself a work if I have one.

Thanks for bringing up Fioricet mareish, I'll bring that up to my doctors too. I feel pretty good about this, I can deal with my other symptoms they usually aren't bad, just need to get rid of these headaches and I'll be doing pretty well. Wish me luck guys!

Edit: I do have muscle tension problems between my shoulders and neck, my physical therapist showed me some stretches to help with that and they provide relief sometimes, depending on where the headache is. So that seems like it is to blame some of the time but it isn't the whole issue.

Post Edited (Noah2112) : 1/21/2019 8:45:30 AM (GMT-7)

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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1681
Posted 1/21/2019 11:37 AM (GMT -7)
This is a random thing that was recently recommended to me, an acupressure mat. I actually really like it, relatively cheap too. Seems to help some people with pain and things like that, maybe helps for lymphatic system as well? If you tried that I'd get the pillow as well so you can target your back of head area. Saraeili's suggestion of craniosacral massage is a good one. Ha, the suggestion of the ice packs!!! when I was bedridden I used to lie all day on ice packs on the back of my head (always had hot, throbbing pain there). The cold helped distract from the pain, they were lifesavers.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 37443
Posted 1/21/2019 12:26 PM (GMT -7)
I didn't use ice packs on my head...but I did use them on my upper back when i was first hit with lyme - excruciating pain . The ice packs worked. But it didn't last...so I had a cooler in my bedroom with a spare one...it melted some...but it did help when I woke up 2-3 hours later in pain again.
At first I put them directly on my skin...but I read somewhere that's not a good idea...so then I wrapped it in a thin towel.

Horrible, horrible nerve pain.

I have been thinking of looking into a counsellor...I think I have some PTSD issues from when I first got symptoms.
I have trouble thinking about/talking about those early days without tearing up.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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bluelyme
Veteran Member
Joined : Nov 2015
Posts : 5187
Posted 1/21/2019 10:59 PM (GMT -7)
Bv cream on neck with some mint in diffuser always nips my headaches
als /ms dx muscle wasting, vasculitis, vertigo etc etc
bvt began 11/15,
smartport install 5/16
1.25 yrs pulsed roceph with zith riffy alinia
,pk and supportive ivs
9 mo zhang bart tx
9+ month dr franz rife,
various parasite protocols iver/ herbal
from bed bound on o2 to keeping up with 5yo kiddo,
2 startups, + pt certified practicing apitherapist
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jb1994
Regular Member
Joined : Sep 2018
Posts : 328
Posted 1/23/2019 1:22 PM (GMT -7)
White willow is what aspirin is made of and not so hard on your stomach

CBD oil works in a pinch

I can't tolerate most all pain meds so I... feel your pain
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