Unrelenting Lyme/Bartonella Headaches -- Has anything worked for you?

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KB69
New Member


Date Joined Jan 2017
Total Posts : 13
   Posted 3/16/2017 9:31 AM (GMT -6)   
Hi,

I'm taking azithromycin, amoxicillin and A-Bart for Lyme and Bartonella. Most of my symptoms are neuro and related to Bartonella (treated Lyme first and many Lyme symptoms are gone, though I know it's not easy to tease out which are which). I will transition from A-Bart to rifampin once I have reduced my Bart load.

My worst symptom is a daily, unrelenting headache. I go to bed with it and wake up with it. It's generally in the front of my head, around my eyes, near my temples and sides to about my ears. I have tried everything to reduce the pain, and nothing has touched it. My herxes only make it worse, so I am working on detox.

For folks with similar headaches -- has anything worked for you? Has anyone tried A-Inflam or liposomal glutathione? Any other anti-inflammatory products that you swear by? I'm at wit's end with these headaches, and I know it will be a few months before the medications make a big difference. I'm even considering coffee enemas as as friend said that helped her with these headaches...

Thanks for any ideas!

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3118
   Posted 3/16/2017 9:33 AM (GMT -6)   
I tried Kudzu and had good success with it. Others have recommended that here.
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme (false?)positive '92,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, CHF, osteoarthritis. No LLMD. Used Doxy, Zithro and Flagyl since June '15, mono each time. Useless. Current treatment JK, Milk Thistle, kudzu for head fullness/pressure, avena sativa for nerves. Bragg's ACV, lemon water, Herbal de-tox tea.

ChickNorris
Regular Member


Date Joined Jan 2012
Total Posts : 449
   Posted 3/16/2017 9:37 AM (GMT -6)   
Treating babesia has helped with my daily headaches. I still get migraines quite often but the daily pain and pressure has improved some. I take crypto-plus for babesia.
Also blue sage and silphitrin for neuro detox
Igenex 9/2016 31-I, 39-I, 41-++, 58-+ Igenex 2/2017 31-I, 41-++, 58-+, 66-+
CD57: 28
EBV, CMV, HHV-6, Mycoplasma Pneumoniae, Bartonella, Babesia
Hashimoto's, endometriosis, alopecia areata, migraines galore


11/22/16 started Doxy 100mg/2x a day, Samento and Banderol 10 drops/2x a day
1/10/17 stopped Doxy, abx break
2/10/17 started cryptoleptis
3/13/17 started Zithromax 500mg, Rifampin 600mg

Village Crazy Lady
Regular Member


Date Joined Feb 2017
Total Posts : 156
   Posted 3/16/2017 10:29 AM (GMT -6)   
I tried Burbur Pinella drops I saw on this forum and it has helped mine. I also find that for me even though I realize it's not great for us, coffee has helped at times.

I have a friend who also says the coffee enemas are amazing. I bought a home kit but haven't tried it yet.

Hope you feel better soon

VCL
~~~Your Life is an Occasion, Rise to It ~~~

Lyme,Bart,Molds,Candida,Cpn,Ebv,MTHFR,Myco
Symptoms for years and years, Diag 6/2016, LLMD 10/2016
Treating with Abx and company

summer16
Veteran Member


Date Joined Jul 2012
Total Posts : 778
   Posted 3/16/2017 10:29 AM (GMT -6)   
Caffeine and/or Excedrin migraine helped immensely.

Patty
toxic effects from 2 doses of Levaquin in 2008.....Xanax for 4 monrhs in 2008 (horrific withdrawal effects)......CDC positive for Lyme's in 2009 (prescribed 200 mg daily of doxycycline for 2 months........extreme fatigue, anxiety, decreased cognition, etc. and was becoming worse in 2012......tested for Lyme's through Igenix and was CDC positive.....treatment started 9/2012

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 1254
   Posted 3/16/2017 10:35 AM (GMT -6)   
For me, my headaches (and migraines related to cycle) were greatly reduced when I addressed the yeast overgrowth.

However, since you are on abx, I'd also be suspicious that you may be having an adverse reaction to one of the abx. One of my kids was on azithromycin for some months. After some months, he started developing headaches and nausea. They were frequent (not as constant as yours - but frequent enough to be concerned). I realize that some may say it was a herx, but I was suspicious of the actual abx. I stopped the abx, and the headache/nausea went away just like that.

Sometimes it may be a herx or flare-up. But sometimes, it may be a reaction to the abx - especially if taking for a longer stretch.

Hope you figure it out. It must be miserable for you. {{{HUGS}}}
Kid#1: Extremely sick for several years, very difficult to treat, but much better lately!
Kid#2: Very sick now despite being treated for years, very bad year
Kid#3: Doing great, minor relapse, but great again (ironically had least and shortest treatment)!
Me: Adv Labs positive 2016 (suspected I passed to my kids) - not as sick as others, mostly battling fatigue, kidney, heart, and yeast issues

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 3397
   Posted 3/16/2017 10:47 AM (GMT -6)   
Bee venom has helped my auto immune encephalitis (brain swelling ) and foggieness and alinia helped also (adc has it )

KB69
New Member


Date Joined Jan 2017
Total Posts : 13
   Posted 3/16/2017 4:00 PM (GMT -6)   
Thanks to you all. It's such a rollercoaster. I made a ton of progress on Lyme, and thought I was near the finish line, only to have Bartonella then rear it's head. Now I feel 10 steps back from where I started. It's so hard to stay positive. Best wishes for good health for all.

B99
New Member


Date Joined Sep 2016
Total Posts : 12
   Posted 3/16/2017 4:23 PM (GMT -6)   
I'm sorry you're experiencing this. My daughter had severe daily headaches for a very long time. It was about half way through the treatment of Babesia that they improved hugely. She is still in treatment, specifically for Lyme now, and the headaches are gone. If she does get one though, it's mild.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 6814
   Posted 3/16/2017 4:59 PM (GMT -6)   
Japanese Knotweed and Red Root helped my brain inflammation and swollen lymph nodes in my head.
____________
You will be the same person in five years as you are today except for the people you meet and the books you read. ~Charlie Tremendous Jones~

KB69
New Member


Date Joined Jan 2017
Total Posts : 13
   Posted 3/16/2017 5:22 PM (GMT -6)   
B99, I'm happy to hear that your daughter is making progress! That's great news! It's hard to believe you're ever going to work your way out of this when you're stuck in the middle of it and the symptoms are overwhelming. I'm trying to keep the faith.

ChickNorris
Regular Member


Date Joined Jan 2012
Total Posts : 449
   Posted 3/16/2017 5:28 PM (GMT -6)   
Yes, pressure headaches are often the result of babesia, not bartonella. Bartonella is the culprit in ice pick type headaches and migraines. I get both! Lucky me! haha! But seriously, it may be time to consider babesia if the head pressure continues.
Igenex 9/2016 31-I, 39-I, 41-++, 58-+ Igenex 2/2017 31-I, 41-++, 58-+, 66-+
CD57: 28
EBV, CMV, HHV-6, Mycoplasma Pneumoniae, Bartonella, Babesia
Hashimoto's, endometriosis, alopecia areata, migraines galore


11/22/16 started Doxy 100mg/2x a day, Samento and Banderol 10 drops/2x a day
1/10/17 stopped Doxy, abx break
2/10/17 started cryptoleptis
3/13/17 started Zithromax 500mg, Rifampin 600mg

B99
New Member


Date Joined Sep 2016
Total Posts : 12
   Posted 3/16/2017 5:36 PM (GMT -6)   
I know exactly what you mean. It's been a lot of work and worry for all of us, and hardest for her. The headaches were always with her, never let up. Keep the faith! Stay positive. Look forward. You can get better.

KB69
New Member


Date Joined Jan 2017
Total Posts : 13
   Posted 3/16/2017 6:08 PM (GMT -6)   
Thanks, B99. Family support is so important. Your daughter is lucky to have you in her corner.

ChickNorris. First, great name. I should have been more creative. smile Second, I get the ice picks, too. I had the Bartonella "stripes" (my term), so we know I have that one. Babesia is a possibility, I'm sure. There's no end to the fun. Hope you're hanging in there.

jennysetter
Regular Member


Date Joined Mar 2015
Total Posts : 228
   Posted 3/16/2017 8:28 PM (GMT -6)   
I had very good success with Excedrin and a hot pack on the pain for about 20 minutes. The heat made me have a bart rash appear which stayed for a little less than 2 days, but worth it to get away from the pain. I get sudden, debilitating headaches in the back of my head where it meets my neck. They just hit me like a ton of bricks and make me want to weep. Horrible stuff....I feel for you. The good news is that I rarely get them anymore. I've had to load up on benedryl on a few occasions to get to sleep and away from the pain and that worked but made me useless for a few days, too, since I'm such a light weight with medications. Again, worth it to get away from the pain.

Hope that gives you a few more things to try.

Jenny

Mustard Seed
Veteran Member


Date Joined May 2016
Total Posts : 810
   Posted 3/17/2017 6:12 AM (GMT -6)   
ChickNorris said...
Yes, pressure headaches are often the result of babesia, not bartonella. Bartonella is the culprit in ice pick type headaches and migraines. I get both! Lucky me! haha! But seriously, it may be time to consider babesia if the head pressure continues.


Its not that simple, and symptoms can overlap depending on how inflammation presents. For instance here's a pressure headache case that ended up being Bartonella:

lymemd.blogspot.ca/2014/04/new-onset-chronic-daily-headache-in.html?m=1

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 32566
   Posted 3/17/2017 8:03 AM (GMT -6)   
Is it a feeling of too much pressure in your head type of headache? If so, kudzu root has done wonders for me and others here for relieving that pressure feeling.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Laker7491
Regular Member


Date Joined Aug 2015
Total Posts : 164
   Posted 3/20/2017 3:30 PM (GMT -6)   
I get really bad headaches at night. I do most everything mentioned. I saw on one post that someone took Benedryl. So I tried it and it helped amazingly. It doesn't work all the time, so I have to mix things up.
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