Suffering once again - These headaches have me super concerned!!

I was diagnosed with Babesia and Bartonella about 16 months ago after having gone 3-4 years prior to that time trying to figure out what was wrong. When I was diagnosed, I was treated with Abx and supplements and after about four months the symptoms went away (although they did disappear prior to this time when I was not taking any abx or supps).

Fast forward to early May of this year and my symptoms came back. My primary symptom is unrelenting headaches that vary in intensity but are sometimes debilitating and never go away completely. The headaches feel like tension/sinus headaches effecting my forehead, temples, eyes, bridge of nose and base of skull. As well, I also have muscle twitches.

Four weeks ago my LLMD put me on Zithromax (300/day - at diagnosis time 14 months ago, she had me on 600mg/day), Malarone (Mepron was $$$$), and Minocycline (was taking 200mg/day but my headaches were so much worse due to this medicine increasing inter-cranial pressure that I'm taking 100mg/day now). As well, I take a host of supplements too long to list!

I'm seeing the LLMD in a little over a week (have to travel 5 hours by car to see her) for follow up but I have been exchanging notes with her since my last visit a little over a month ago. She is recommending I see my primary doctor to review the headaches and also my eye doctor as she stated she does not know the origin of the headaches.

So, this concerns me as part of me thinks the headaches are from Lyme (for the past five years they have apparently been from Lyme with very similar symptoms) but they seem to be more chronic (all the time!) than I remember - so my cynical side thinks there may be a brain/sinus tumor which concerns me to no end. I did have a head/neck MRI about 16 months ago in the ER and all was clear but things can change.

I know each patient is unique but anyone else have experience with these types of headaches and muscle twitches? If you were taking abx, how long after you started did you see an improvement in the headaches? Just looking for input as in the end, my doctors will need to sort this out and provide the proper path forward. Thanks in advance!

Little Bear - Thanks for the response.

For detox I'm doing the lemon water, regular saunas, Chlorella, Sarsaparrilla, and will be starting activated charcoal and Burbur this coming week. Also doing epsom salt foot baths once on a while.

The only thing I take for inflammation is Turmeric but will look into A-Inflam.

I think my eyeballs are always hanging and swaying in the wind due to the pressure in my head!

Swimman, I had horrible headaches at the beginning of my lyme. I finally found relief swimming in an icy cold mountain lake.

After that I started taking cold showers. Oh gosh, finally relief.

Then I started using an ice pack on my head.

I tried everything you can imagine medicine wise and herbal wise. Nothing helped me but the above.

It is horrible how we have to try so many things to find what works for us. We are all so different.

I hope you find something that works because I know this head pain and it is horrible.

I'm suffering from daily headaches now. it just started this week. FML.

Do you also have this constantly ringing high pitch noise in the ears (tinnitus) ?
What about extreme insomnia ? Difficulty falling asleep and staying asleep.
These additional symptoms usually go hand in hand with the daily occuring migrating lightning bolt sharp head pains.
Do your headaches only last a couple of seconds like mine? Mine usually last like 10-20 seconds.
My headaches are usually located near the temple area and at the back of the head (near base of skull) and also sometimes near the top of the head.
The pain occurs in the left brain hemisphere and in the right one.
Not sure if the pain is deep inside the brain or rather in the meninges. Probably both.
I also get an itching sensation on my upper back pretty much every day which kind of reminds me of this stinging in the head. Could it be caused by the same infection? Who knows.

Post Edited (Insomniaa) : 7/9/2017 2:16:42 PM (GMT-6)

I took Excedrin Migraine over a year ago and felt horrible. Jittery, nervous, anxious, etc. As well, I cannot stand the taste of coffee but my LLMD has said to lay off caffeine which I would normally get from black and green tea that I used to drink constantly.

Fortunately, insomnia is not an issue I have as I sleep fairly well. However, my LLMD thought taking Melatonin nightly would benefit me. I sometimes take it and sometimes not.

Today I stopped taking Sida Acuta and Cryptoplus and actually felt a little better although the headache/pressure is still present. I also took an epsom salt/hydrogen peroxide bath this morning and iced my neck. Planning to get to the gym tomorrow to spend some time in the sauna and get a cold shower (water does not go super cold in our home in the middle of summer).

My headaches are usually constant (all day) but vary in intensity. I don't get sharp shooting pains but one big constant pain when they are bad - nose and eyes feel like they are going to pop off my head, tightness around the temples and base of skull, sinus pressure at the bridge of my nose, tight jaw and sometimes my upper teeth feel sore.

Every morning I wake up hoping to be slightly better. As I had a better day today, I'm hoping the improvement will continue and I'll have more good news to report tomorrow. The strange thing is in the past after 3-4 months of suffering, the symptoms would subside and/or disappear, only to rear their ugly head once again 6-8 months later. I'm now at eight weeks and want to get ahead of the bugs and die-off so I will be more diligent with taking meds/supps and detoxing.

Hi Swim,

Severe, debilitating headahes were my worst symptoms. I had one headache that didnt' break for 4 months. I went to bed with it, woke up in the night with it, and started my day with it. I also had ice pick shocks to my temples and cheek bones.

My headaches had been global -- head pressure, head pain -- over my ears, around my eyes, on my sinuses, in the back of my head. At the time, I relied on Rx doses of Ibuprofen and RX Fioricet (which I didn't take unless I felt like I was heading to the ER).

Like others, I take Pinella Brain Nerve Cleanse and Burbur, and use other detox strategies geared toward the liver and lymphatic system. I do lymphatic message and drink lemon water.

For pain, I tried CBD Oil, which is the legal, non-THC portion of hemp oil. It didn't stop the pain completely, but it dulled it enough that it was manageable.

We are all different, and I think it's important that you follow-up with your MD on next steps.

But, once I started treating Babesia (I've now been at it for 4 months), the headaches finally broke and I now have days without headaches, or mild ones that better respond to over-the-counter medication.

I hope you find relief. Keep the faith.

KB69, headaches, nausea and eye pain are my worst right now and I've been treating for 5 months. May I ask what treatment protocol you are on for babesia and which CBD oil did you use?

I am wanting to try the legal CBD oil. Nothing to lose if it doesn't help.