My main symptom is a 24/7 headache. I have been on IV Roceph, zithromax, malarone, cipro,and now Doxy.
doxy is the only thing that seems to have made them a *little* better.
Some things that I have found to be helpful: a tube sock with rice inside heated up and tied to my head.
alternating ice and heat. Klonopin.
vicodan, darvocet, motrin, tylenol, benedryl are all uneffective for me.
These headaches get worse when I herx and become unbearable. Usually for 3 days per month. Then nothing has helped.
Hope that your hesband and son find some relief, I'm not sure which infection causes this, I think that they all can.
Feelfit
Posted by Dahlia (Member # 17066) on :
Marnie, So then is caffeine good for those of us who suffer from headaches? If so, is the caffeine consumption bad for our Lyme though (that is what I've read).
Thanks!
Posted by soonermom (Member # 14494) on :
This was probably the worst (and constant) symptom for me. I am used to migraines, but this was something else.
The first thing that helped was doxycycline, but more recently I started taking alpha lipoic acid (to help increase glutathione )with NAC N-acetyl cysteine. My LLMD told me to take 600mg two times a day (Alpha lipoic acid). (Glutathione is a powerful antioxidant and thought to bind with the toxins/free radicals.)
I started taking 300mg in the morning, and then realized that I was getting the headache at night and also waking up with it....after I took my morning dose it would go away. So I now take 300mg am and 200mg pm (because it does give me reflux some)..(you might ask LLMD for dose for 4 year old??)
I also feel like it gives me energy, maybe it is just the relief of the constant pain??
Anyway, you can buy this at walmart so it would be easy to try it out.
I had the headaches for a year, and this helped within a week or two.
Posted by yanivnaced (Member # 13212) on :
niacin (the simple kind that causes the "flush") takes away the occasional tension headache for me.
Posted by brf (Member # 8748) on :
We used to have constant headaches and migraines. Eliminating wheat, gluten, dairy, corn, sugar etc. really helped over a period of time.
We still get headaches intermitently now, especially during flares and herxes but not the continual ones that we used to.
Posted by dguy (Member # 8979) on :
Getting my active vitamin D levels down. This meant dramatically reducing dietary vitamin D intake and light exposure. Took a couple weeks to feel the difference. The added benefit was my teeth stopped cracking and chipping.
Most lymies have low vitamin D on the standard test because the infection is consuming it for coversion to the active 1,25D form. 1,25D is less often tested, but is a critically important measurement for lymies.
Posted by nurselily (Member # 17265) on :
Both my son and I had babs, bart and lyme also. what finally 'kicked' the headaches was a combo of the abx and acupunture. It was the combo that I believe made us well again. the acupunture stopped the headaches and strengthened the immune system...
combining eastern and western medicine.
Lisa
Posted by nurselily (Member # 17265) on :
Both my son and I had babs, bart and lyme also. what finally 'kicked' the headaches was a combo of the abx and acupunture. It was the combo that I believe made us well again. the acupunture stopped the headaches and strengthened the immune system...
combining eastern and western medicine.
Lisa Posted by sparkle7 (Member # 10397) on :
I think Excedrin works better than the expensive prescription migraine meds! I tried them. Relpax knocked me out & the headache still didn't go away.
I had a doctor who suggested trying an espresso for headaches (no milk or sugar... I don't think I can drink it like that).
It also could be a hormonal issue. Lyme does disrupt the endocrine system. I was using bio-identical hormone replacement for a while & it helped with the headaches.
I decided to stop them because I felt I didn't need it anymore. The Excedrin seems to be the best thing for me these days.
I don't think I have co-infections, though.
Posted by tickbattler (Member # 14873) on :
Thank you all for your replies!
I noticed that two of you mentioned doxy as what helped lessen or eliminate the headaches. I have wondered about whether my husband should try it since it worked the first time he tested positive for lyme (unfortunately he was only given 3 weeks of it and we thought he was cured, but he got really sick a year later).
I am more interested in finding the right drug or supplement to get to the root of them rather than blocking the pain when they do come.
soonermom - may I ask which LLMD you see? Your approach sounds very interesting. Do you think it's killing the bugs or addressing the pain symptoms?
nurselily - I firm believer in acupunture and have used it in the past for pain relief. Do you recall which abx you were using that helped kick the headaches?
Thanks!
tickbattler
Posted by Shosty (Member # 12232) on :
Butalbital is the only drug that worked for my daughter, who had an excruciating headache 24/7 for more than 2 years, which kept her out of school for months at a time. This was different from migraines, which she still has. Butalibital is a pain med but also has caffeine.
Some meds for Lyme etc. have headache as a side effect, and interactions between meds might also cause headache.
For our daughter, the Lyme meds actually CAUSED the headache, in a roundabout way. She got yeast and inflammation, with leaky gut, which then caused food allergies because food molecules were migrating into the bloodstream from the porous gut lining, causing allergic responses.
The first day she gave up dairy, gluten (wheat), eggs, citrus, soy, etc.etc. she was much worse and had to go to the ER. The third day, her long-time headache was totally gone.
So, if that is your problem you can find out pretty quickly.
She went on the elimination diet for a few weeks then introduced foods back one at a time. She still avoids gluten and dairy (especially dairy). The headache has never returned.
She healed her gut using gastrocrom liquid (a mainstream RX, made from an Egyptian plant) and also a lot of probiotics.
For migraines, she uses diet coke, acutely, and has greatly reduced the frequency using natural progesterone cream. So those headaches were estrogen-related.
I think that it is a good idea to get off all daily medications (well, not insulin or heart meds, or anything necessary for survival) and start fresh, see where you are. Assuming that it is the infection that is causing the headache may actually make things worse.
The gut is the "second brain," and has all kinds of functions beyond just digesting food. A lot of your serotonin comes from the gut, in fact.
Try the diet for just a few days- you will know within a week. Then, you can move on to all the other excellent suggestions given here.
Posted by Shosty (Member # 12232) on :
One other thought, a bit later. A chiropractor helped me quite a bit. She explained that muscle spasms and swelling in my neck were causing pressure on my brain stem, or the blood vessels supplying my brain stem-? This caused a lot of pain, dizziness, chills, and some weird neuro stuff, which, believe it or not, went away with her adjustment.
This same chiro also does nutrition and knows about the dietary changes I wrote about before.
When I can't affort the chiro, which is usually, I now use Ben Gay and massage my own neck. I put my hands in plastic baggies because I don't like to get the stuff on my fingers, and literally massage my own neck, upper shoulder, that's about all I can reach. But it can help with headache, not only with the pain but with some of the neuro symptoms. I know this may sound weird!
I would strongly recommend cranial sacral work too, if you can afford it.
Posted by Lymetoo (Member # 743) on :
Mine went away with babesia treatment, I think. Not sure, because it may have been the beta blockers instead, or in addition to the treatment.
I rarely have migraines anymore. Yippee!!! Posted by njlymemom (Member # 15088) on :
LYme and Bart combo tx. Plus physical therapy.
Posted by Munch (Member # 11323) on :
My constant daily headaches improved after I started on Abx. I suffered with this for about 25 years.
I could have worked for the national weather service because I could predict rain within a 2 hour window. I can no longer do that.
I was a walking pharmacy with a small bottle in my purse full of one or two of everything (Tylenol, aspirin, ibuprofen, Imitrex, antacids, etc.) Everyone came to me for meds if they were in a pinch.
Around the same time I started Lyme treatment, I got a LEAP test which stands for Lifesyle, Eating and Performance from my doctor. This is a blood test that tells which foods I'm allergic or hypersensitive to.
I got a laminated card to carry in my purse with a traffic light type coded system. Red colored foors are those to avoid. Yellow is a maybe or IND. Green is a go.
After cutting out the red foods and testing the yellow ones, I no longer have headaches and that pill bottle in my purse.
I reacted very strongly to sulfites, food dyes like Red #40, Green #3, Yellow #5, banana, orange, grape, watermelon, soybean, turkey, tuna, certain preservatives, candida, and ibuprofen.
Many of these foods I'd consumed on a daily basis. There was no real way for me to know what was causing my headaches. That's where an elimination diet can help too.
Because so many of these foods are found in processed food, I begain the Specific Carbohydrate Diet (SCD) while cutting out the foods I'd reacted to. The SCD diet is complex carb or grain and dairy free. I stuck with the diet for a good 6 months allowing my immune system to heal.
Posted by luvs2ride (Member # 8090) on :
homeopathy was the first treatment I tried and it totally eliminated the migraine headaches, memory loss and stiff neck symptoms.
The migraines and the brain fog have never returned and it has been 3 yrs.
Posted by tickbattler (Member # 14873) on :
Thanks all...I would love to hear specifically which medicine or supplement or homeopathic medicine that worked for you. Do you mind providing that info too?
Thanks,
tickbattler
Posted by clairenotes (Member # 10392) on :
I would experience headaches after lyme-killing remedies. In my case it was viruses, which always appeared in die-off reactions. Herpes zoster, in particular, was a problem, but other viruses also appeared.
So if the headaches started after introducing abx to you and your son, you might consider looking into this with your LLMD. If they have been present pre-lyme treatment in the same basic form, then perhaps this is just from the original infection.
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