Help? Herx or something else?

[Suzan]

DD9 has been on her lyme treatment since the end of December. LLMD wanted us to retest Igenex to try to envoke a positive test (first test was IND on lyme specific bands). So we stopped her antibiotics 8 days ago. I put her back on last night. She's not well today, emotional and pain so I figure she's herxing.

 

We now have our pedi neurologist managing our lyme care. He is working with our old LLMD but he's still new....

 

So, starting on Monday (before adding the abx back in) she starts with these burning headaches in her temples that hurt so bad she calls them a 10 on the pain scale. They last about 10 - 20 minutes. It's happened every day this week (so three times but also a couple of little mini ones). The neurologist says if they keep happening, he wants to give her an EEG or something else (?) to check to be sure there is no seizure activity or other neurological thing going on.

 

My reaction would be to say it's a herx or lyme symptom. I don't want to lump everything into this category if there could be other things going on but since he's a neurologist, he'll be looking for these things and maybe we'll end up spending a lot of money where we don't need to.

 

 

This is a long way of asking if anyone has heard of this as a herx? Burning pain in the temple that's really, really bad. After the first one, she said she could not think well after (that's what concerned the neurologist too).

 

susan

[smartyjones]

susan -- are you familiar with 'ice pick headaches'? google it and see if that describes it. i am quite sure it can be a bartonella symptom but not positive.

 

i began getting migraine headaches around age 11 until 18. they went away for an extended time but came back after my first pregnancy. about 5 years ago, i had a variety of symptoms -- i now believe to be TBI related. one was intense quick headaches as if someone was driving an ice pick into my head. i seem to remember mine were on the top of my head. they stopped when i got off the pill. i do think there was a hormonal relationship but am thinking more along the lines of screwy hormones due to TBI that the pill exacerbated.

 

while being treated, i've been having various forms of migraines but not those again.

Edited March 9, 2011 by smartyjones

[Suzan]

susan -- are you familiar with 'ice pick headaches'? google it and see if that describes it. i am quite sure it can be a bartonella symptom but not positive.

 

 

Well that is interesting because I used to get this all the time! It felt like a knife was going through my head, often at my eye. Very intense and very quick. We are under observation for bartonella.

 

For my dd9 though, it is more burning, like it's on fire and lasts much longer (10-20 min). Interesting though that you talk about hormone related. She is starting puberty

[MichaelTampa]

I haven't heard specifically of that type of headache as a herx. But, I have heard of headache as a herx, very common, and most don't describe the headaches, so difficult to say.

 

I have had headaches like that, back before I started treating for lyme+bartonella. They came from exposure to wireless signals, and also did get very impaired thinking and memory and so on. Acupuncture helped. Sounds like possibly hormones may be playing more of a role than wireless, but, certainly could be herx.

 

Herx or not, though, keep in mind, the lyme can be dangerous, and the herxing is too. Sometimes the docs have to make very difficult decisions on whether to take people off the meds--are they killing the patient with too much herxing. These are probably very rare cases, but can happen, point is, symptoms of lyme can be dangerous, and herxing is the same thing. The doc is right to be at least thinking about possibility of seizures, yes, that's what he knows, and it does happen with lyme, although I imagine quite infrequent. So, yes, if we had every possible concern checked out, it's a lot of money and time and a lot of checking about things that aren't going to happen. Just be aware of the other side that just because it's herxing doesn't make it safe. I might wonder or ask neurologist why headaches and poor thinking would point him in the direction of questioning seizures--headaches and poor thinking really are very common lyme symptoms (though, perhaps the type of headache not as much so).

[NancyD]

Both DD and I have been getting a lot of headaches lately (occasionally a quick stabbing pain) and I think it is herxing. We rarely get headaches so this is unusual for us. We have also been much more fatigued lately.

 

Nancy

[JuliaFaith]

Before ds13 started lyme treatment, he had a "PANDAS Exacerbation" which took us a few days to start to treat because dr. was out of town. We started abx 2 days later but by then his symptoms were getting bad fast and he had a headache that was 'stabbing' and it lasted 5-7 days. Slowly went away (not the original headache). Went to emergency room per dr. and they did absolutely nothing except give him tylenol and turn bright lights on to talk to him. This was at a Children's hospital. One of his continuing symptoms, before this happened, was a dull everyday headache.

[Suzan]

I thought I would post an update here, I started dd9 on bentonite clay and increased her probiotics and continued on her lyme treatment. After 2 more days, the headaches have stopped and, knock-on-wood, have not returned.

 

Susan

[MMC]

Susan, our LLMD prescribed our DS cholestyramine. It's a binder powder that lowers cholesterol, but also helps detox. He said it works better than bentonite clay...although, we never tried the clay, so cannot compare. But, we think it is helping. He takes it in juice once or twice a day on an empty stomach. We also give liquid Advil in the morning. This combination has helped...no more headaches or fatigue spells. I like the cholestyramine b/c it is a prescription. With our insurance, it was only $15.00. It comes in a box with 60 individual powder packets and will last almost two months b/c he mostly takes one packet a day.

[Suzan]

Susan, our LLMD prescribed our DS cholestyramine. It's a binder powder that lowers cholesterol, but also helps detox. He said it works better than bentonite clay...although, we never tried the clay, so cannot compare. But, we think it is helping. He takes it in juice once or twice a day on an empty stomach. We also give liquid Advil in the morning. This combination has helped...no more headaches or fatigue spells. I like the cholestyramine b/c it is a prescription. With our insurance, it was only $15.00. It comes in a box with 60 individual powder packets and will last almost two months b/c he mostly takes one packet a day.

 

Hi, actually, I take this powder and I like it. dd9 can't tolorate the taste. I have a pill form of it but I think I don't give her enough (she can take 2-4 pills a day and I only do 2). I can increase or decrease at will so maybe I'll try to increase and see how she does.

 

Thanks for the reminder!