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DD14 for 2.5+ yrs has been treated for Babesia, Bartonella, viruses, MTHFR, parasites, mold, yeast, etc. You name it - we've tried it. DD14 has made huge progress on treatment but still deals with residual symptoms, so we keep treating.

 

45 days ago she developed an unrelenting headache. She has dealt with headaches before, but none that lasted this long. Nothing relieves the pain and she rates it at a "7." She has a high pain tolerance and rarely complains about her symptoms. We have tried ibuprofen, Aleve, heat, cold, Immitrex, Flexeril, chiropractic, aspirin. Today after we met a neurologist who completely dismissed her and was basically an donkey's butt about her Babesia tx (even though I had supporting positive test results), I resorted to giving her Tylenol. We have resisted Tylenol because it depletes the body of glutathione. But I figured we had nothing to lose to see if it would work and figured the benefits would outweigh the risks. Tylenol gave no pain relief. We left the doc's office with an order for an MRI and instructions from Dr. Butt for her to return to competitive swimming and to ask the LLMD to stop treating Babesia - I think he thought she was seeking attention. Seriously??? I have spent the last hour ranting....I am so angry. We often hit brick walls when we see arrogant specialists. It just makes me love my LLMD all the more - she is one of the few people that gets it.

 

Anyone have experience with a headache that lasted this long?

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I had VERY high ASO (1600) and the doctor started me on penicillin. I had SUCH a headache for SUCH a long time. It felt like meningitis. Not knowing what else to do, I finally stopped the penicillin and the headache and meningitis feeling seems to have subsided over the past few weeks. If your daughter is on antibiotics, you might want to consider stopping them to see if the headache resolves. This is just my experience.

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I'm so sorry you had that awful experience. In glad he wrote for an MRI. You want to make sure there is t something mechanical causing those headaches. A headache for 45 days is NOT normal and you should try a different doctor if you don't get anything out of the one you just saw. Have you checked all your child's meds for possible side effects? Switching abx is t a bad idea as so done else mentioned. My DS has been having headaches and we am have found its a common side effect for Prevacid that he started A few weeks ago.

Dies he have any nausea or sensitivity to light? Stomach pains?

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About 8 years ago, I had a "never-ending" headache. No doctor could figure it out. We did allergy testing, MRI, the whole 9 yards. Turned out to be a gluten sensitivity. I know she's GF/CF, but any chance she's developed a sensitivity to something else such as soy or corn?

 

Another thought was the mold. Have you moved? Has she been treated with cholestyramine since? You'd posted in the past that you thought her ongoing headache might be from mold exposure - any chance that's happened again?

 

Is she well hydrated? Dehydration to any extent gives me a headache.

 

If none of those, did you change anything (meds, supps, school, anywhere she's going) around the time the headaches started? I'm sure you've thought through this, but just wanted to mention - might be worth running through it one more time.

 

Final idea - as you know, things can pop back up as you go through treatment, so it may be worth having your LLMD run some tests. Epstein Barr gave Alex an ongoing headache, but of course other bugs could do it too.

 

Hope you find the answer soon!

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I neglected to mention that right before she developed the headache she visited a friend's house that we suspect has mold. She had not been to the friend's house since January and after that visit she developed an unrelenting headache which led to a CT scan which showed sinusitis in the sphenoid and this led to sinus surgery in March. After the sinus surgery, the headache resolved.

 

ENT did a CT scan again this time around and there is no sinusitis so he referred us to a neurologist.

 

If the headache was caused by mold, how do you resolve this? She is back on cholestyramine, but so far it's not helping. Could the headache be from inflammation from the mold exposure that wouldn't show up on any imaging tests?

 

She is pretty sure that she is sensitive to corn, but can't seem to avoid it completely since we are GF. I probably need to insist on removing it from her diet.

 

We have not moved yet, unfortunately. We were unable to sell our home and we will relist it on March 1. Ugh.

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How much cholestyramine is she taking now? Alex was prescribed one scoop 4x/day for a month after we moved. He herxed so badly we reduced it to 3x/day. Our doc says you have to get out of the environment before you start treating, but did say that one family he treated couldn't move, so they used Thieves Blend on their house and were able to treat while still there. We tried this before we moved and the ERMI numbers did come down significantly with the Thieves Blend. We diffused it in our house for 2 days straight (stayed at a hotel during that time because of the strong smell), then I think you need to do it again every month or two. We ordered the oil and the diffuser from YoungLiving.com.

 

To answer your question, yes absolutely the headache could be from inflammation that doesn't show up on a scan. Before moving and being treated I had pain all over my body. It got much worse during treatment (a bad herx), then got much better once the toxins were removed and things had time to settle down. A few months ago my pain started to get worse again and we finally figured out what the mold exposure was and eliminated it. I went back on cholestyramine 3x/day and the pain resolved within a week.

 

As for the corn, I'd talk to her about doing a trial of no-corn to see if it resolves the headache. That's something you can do right now, and if it doesn't work, at least you've ruled it out. If it works, she'll probably agree its worth doing without some foods she likes longer term.

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I don't want to state the obvious here but what seems to be missing in your arsenal of treatments is a good old narcotic. I have been a nurse for over 20 years and when things get to that point you really have to pull out the big guns. You gave her flexeril which is a muscle relaxer and that may help with the muscles that by now have started to tense around her neck, but she really needs an old fashioned narcotic pain reliever and go to bed. Do you have anything like Lortab, or Percocet? Don't think because she is 14 that she can't handle it, she can. My 15 yr old son has been having migraines since he was 12. We can usually manage with Ibuprofen if we catch them early, but sometimes if it goes too long he has to have something stronger and straight to bed in a dark room. I realize this may not be a migraine, but the concept is the same. She needs something to stop the cyclic release of catecholamines which is causing this problem (regardless of the trigger). That is what the narcotic will do. I can tell you, If I had a headache for over a month, I would have taken a big old pain pill by now. :unsure:

 

Dedee

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A lot of good info from everyone. We have had mold issues too.

 

In regards to the corn. My DS tested fine for corn but I noticed he craved it which for me has always been a clue. The craving is due to a morphine-like effect when the immune system is triggered. I learned that over 80% of corn has a pesticide inserted into its DNA which means every bite has toxins being produced in your gut. This genetically altered corn is in most gluten free products unless NON GMO Project Verified.

 

Our IGG or IGE numbers were over 1,000 and life threatening. When we switched to organic corn and non GMO food they dropped to low 300's. Behaviors dropped too, Maybe this would help with her headaches.

 

This corn is being proven so toxic that in November Mexico has ordered all farmers to stop growing it effective immediately!

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The craving is due to a morphine-like effect when the immune system is triggered. I learned that over 80% of

I am not disagreeing with you, but I am so curious about this. I have heard this (anecdotally) from many, many friends. Do you know of anything scientific that backs this up?

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