I've been ill for the past 8 years with a neverending 24/7 headache with lyme esque symptoms

WalkingbyFaith said...
I just noticed that I misread Georgia Hunter’s comment. He said intrathecal pressure (which I had never heard of). I was thinking intracranial pressure.

“in·​tra·​the·​cal | \\ˌin-trə-ˈthē-kəl, -(ˌ)trä-\\. : introduced into or occurring in the space under the arachnoid membrane of the brain or spinal cord intrathecal drugs.”

(merriam-webster.com)

running wild said...
Constant - I asked about the stiff neck looking for migraine-type reaction, even though you'd mentioned pressure. Stiff neck often comes with Lyme and has been a bad symptom for years with me. 90% of the time it leads to a migraine.

Doesn't seem like that in your case, and I'm sure you had looked into it. Mentioned it just in case. Hope you find an answer real soon.

Personally, I never had a migraine in my life. But I really appreciate the help from you and the others in the thread.

A lot of those symptoms scream Bartonella, and the fact that you respond to herbs makes it more likely. I got horrific headaches from Bart, and I've had chronic sinusitis. I wonder what you have tried just for detox? Quit the herbs and everything and just focus on detox. Burbur Pinella (start with 1 drop), binders every day, lemon water, epsom salt peroxide baths, dry skin brushing.

L-Ornithine -- have you tried it? If you've never tried it then stop everything and try that first. The first few times I took it I felt like my head was emptying out, it was a pretty amazing feeling.

Guessing you had a brain MRI -- it didn't show anything? Any lesions?

The hit in the nose when you were a kid could have absolutely caused some lasting damage. It did for me.

Only other thing I would mention is a cerebral spinal fluid leak, but I would guess a neurologist would have checked for that by now. Your other symptoms don't fit though, and they are numerous.

How are your lymph nodes in your neck? Bart made the lymph nodes inside my head clog up, and that caused severe headaches for months.

Jay,
TUDCA helped me a lot with toxicity. Have you tried it?

Orbitingaround, what dosage of Ornithine has helped you with your headaches, and do you take it with other things or just by itself on an empty stomach? I read that the combo of arginine, citrulline and ornithine might help with headaches.... but just curious what your take on it is since it sounds like you've had some success with it.

WalkingbyFaith, good to hear that it helped with your numbness. I have a bit of numbness and tingling in my hands and feet so hopefully this might help with it. What brand and dosage of Tudca did you use? Have you tried Sporonox in addition to your binders? I remember a Dr saying in an interview that his mycotoxin levels didn't improve with binders alone, and that he only saw improvement when combining anti-fungals, specifically itraconozale with the binders.

Constantheadache, you mentioned that you also experience toothache/pain. Just wanted to throw out that a hidden tooth infection might be contributing to the headache. Dr Yu in St Louis and Dr Rowen in California are known to connect hidden teeth infections to pain in other areas of the body. Dr Thomas Levy has written a lot about it in his book hidden epidemic and Dr Yu just wrote an article called Bite, Breathing, Brainstem and More. You can see some of Dr Robert Rowen's patients on his youtube channel who had pain relief by treating certain teeth. I'm suspecting my headaches got worse earlier this year around the same time my occasional tooth ache showed up.

Jayp12 said...
Orbitingaround, what dosage of Ornithine has helped you with your headaches, and do you take it with other things or just by itself on an empty stomach? I read that the combo of arginine, citrulline and ornithine might help with headaches.... but just curious what your take on it is since it sounds like you've had some success with it.

I take 500mg every morning on an empty stomach. I know people take it at night to help with sleep, but it never seemed to make a difference for me. When I was still getting bad headaches I tried increasing to 1500mg a day and it didn't seem to make a difference -- but I am a very tiny person who seems sensitive to everything. Also, when I first started taking it my urine got VERY cloudy, which to me indicated that it was working, and the lymph nodes around my collar bones ached and felt heavy, like they were clearing. That stopped happening once I began taking it regularly. I use the NOW brand. Other people take LOLA l-Ornithine l-Aspartate, but I have never tried it.

ConstantHeadache said...

dcd2103 said...
Have you considered it could be babesia (based on the air hunger) and/or bartonella (based on the weird “scratch marks” and neurological issues)? Can you post a picture of the scratch marks, almost sounds like bart stretch marks that disappear that I’ve seen described here many times

Here are some photos, the scratch mark is in the first two and you can see the other marks in the other photos.
https://imgur.com/a/Z2jMG4A

I've considered babesia and bartonella, but I just don't know what to think, I've tried a lot of things but am still sick so I'm really confused about it. The air hunger is mostly from some of the antibiotics I've taken, it's generally not a problem otherwise.

I'm glad to help! I've had lyme for years bt 1 night I actually gt bit by something and it looked exsctly like your picture. Also had about 12 big bites that looked and felt like mosquito bites bt weren't and we checked for bed bugs and it wasnt that either. Came to the conclusion that our neighbors had cats and dogs downstairs that they weren't taking care of so it was flea bites. That's where bartonella comes in. For years I had the most unbearable migraines that were crippling. Nothing worked I mean nothing. Caffeine used to settle the pain bt stopped working long time ago. I would lay in bed in the dark for 3 days straight with no noise or light because these migraines were so bad. Ct scan and MRI wouldnt show anything. Always normal. That's when I realized babesia and bartonella must be at play.

Have any breast implants or implants/medical devices with silicone? Look up “breast implant illness”, or the “explant” documentary. It can migrate through the body and trigger immune/nervous system responses.

Also look into: Ehlers danlos Syndrome (hypermobile variety, can cause chronic migraines etc), CCI (craniocervical instability), TMJ (severe case)

Constant, how’s it going? These symptoms sound far, far too real to me too.
Have you tried:
Hyperbaric oxygen therapy
Infrared sauna
CSF leak (blood patch and other treatments)
Stem cells
Safe amalgam removal
PRP
Ozone dialysis
Autohematherapy
Checking for environmental toxins (pesticides are a particular concern)
NAD IV