Please help I’m giving up - SEVERE head pain

After trying to self treat Lyme, by mixing a few abx and a potent herbal mixture for about two weeks during June, I developed a severe reaction and treatment induced inflammation that’s lasted months. This started with horrible head pressure, allodynia, migraines, swelling, bulging veins, painful tendons and ligaments on my forehead, brain squeezing, feeling like my head is strained and full of cotton, every imaginable pain and the worst headache of my life, and weird sensations that’s lasted 4.5 months. I thought it was a herx, mcas reaction, flare or that the abx caused Intercranial pressure. However I had a normal CT, MRI, and spinal tap pressure. The pain has been so severe even after stopping all treatment for months. I also started developed mcas symptoms and in October I was diagnosed with Autoimmune encephalitis/pandas, neuro Bartonella, and mold. Things have gotten worse as I’m developing these painful bumps on my forehead like someone hit me with a bat with continuous internal pain trapped in my head that may have caused these bruise like bumps (internal brain injury feeling). I’ve also had severe pain on the top of my head that feels like a brick was dropped on it or claws are digging into my head, ear fullness, and pressure in my forehead like someone is pressing hard against it. It’s awful I have no idea why this is happening. I do have mcas but antihistamines and stabilizers aren’t doing much, and it seems like it’s more than mcas causing this pain. I also know that Bartonella may be driving the encephalitis but I am in no state to kill anything.. I’m not sure why I’m still in this much pain or if I need to look into structural complications from a neurologist. I can’t get this brain inflammation down, I’ve tried everything even a spinal cord stimulator, a lot detoxing, botox, meds it’s unbearable. I’m from Texas and no one here is helping and I’ve been to many hospitals. it all goes back to this treatment induced brain inflammation but no one can figure out why I had this reaction and what’s continuing to cause my head pain. I can’t help but think it’s could be a physical issue like restricted veinous blood flow or some complication from AE after killing bacteria. Has anyone developed ICP or some vein compression or brain issue from Lyme treatment? Im just trying to get to the root of why I had had reaction and why I’m continuing to be in so much pain. This is too complex. Wanna give up and about to. If anyone also has recommendations for doctors who deal with complex issue neurologists, LLMDS, etc

Lab test results:
Elevated cam kinase on cunningham panel
Gad 65 elevated on Mayo AE panel, CSF showed multiple oglioclonal bands, EMG showed slowed nerve response
Neural zoomer showed several brain inflammation markers, anti glycine, anti dopamine receptor 1, EBV VCA gp125
Spect scan showed hypofusion temporal lobe
Bartonella is positive on Tlab
IGENEX showed +23, multiple IND, TBRF, Babesia IND, mycoplasma had high IGG
Mold/marcons positive from real time lab, elevated tryptase (mcas), MTFHR/MTRR, CBS mutations
high IGG for HHV6/7, EBV, HSV 1 on lapcorp
Diagnosed with median arcuate ligament syndrome in May (vascular compression) not sure if this could have to do with something

Post Edited (sarah r) : 11/27/2023 1:53:30 AM (GMT-8)

sarah r said...
After trying to self treat lyme with abx for a week in June I developed severe pressure, allodynia migraine, swelling, bulging veins or tendons that hurt to touch, brain squeezing, feeling like head is strained and full of cotton, every imaginable pain and basically the worst headache of my life, and other brain sensations for 4.5 months. I thought it was a herx or mcas reaction/flare or the abx causing Intercranial pressure). The pain has is so severe and I’ve been off treatment for months. I’ve been officially diagnosed with mcas Autoimmune encephalitis, neuro Bartonella, and mold and now I’m developing these painful bumps on my forehead like someone hit me with a baseball bat maybe due to the internal pain trapped in my head causing bruise like bumps. I’ve also had severe pain on the top of my head too like a brick was dropped on it or claws are digging into my head, ear fullness, and head feels full of cotton. It’s miserable I have no idea what’s going on. I do have severe mcas but antihistamines and stabilizers aren’t doing much. I also know that Bartonella may be driving the encephalitis but I am in no state to kill anything.. I’m not sure why I’m still in this much pain or who would be able to figure out why this happened. I can’t get this brain inflammation down, I’ve tried everything even a spinal cord stimulator, donkey milk a lot detoxing, botox it’s unbearable. I’m from Texas no one here is helping I’ve been to many hospitals please someone help me and all this brain inflammation was treatment induced. I can’t help but think it’s could be a structural issue like restricted veinous blood flow or some complication from AE after killing bacteria. Has anyone developed ICP or some vein compression or brain issue from Lyme treatment? Im just trying to get to the root of why I had had reaction and why I’m continuing to be in so much pain. I can’t figure it out and I’ve already attempted suicide.

Lab tests:
Elevated cam kinase on cunningham panel
Gad 65 elevated on Mayo AE panel, CSF showed multiple oglioclonal bands, EMG showed slowed nerve response
Neural zoomer showed several brain inflammation markers, anti glycine, anti dopamine receptor 1, EBV VCA gp125
Spect scan showed hypofusion temporal lobe
Bartonella is positive on Tlab
IGENEX showed +23, multiple IND, TBRF, Babesia IND, mycoplasma high IGG
Mold/marcons positive from real time lab, elevated tryptase (mcas)
high IGG for HHV6/7, EBV, HSV 1 on lapcorp

At this point I think you should keep detoxing. Is there anything that helps you?
The one thing that helped me was warm Epsom salts baths.
The relief doesn’t last - so I had to take two or three baths just to give me some relief and keep me sane.

I’m sorry you’re suffering…

sarah r said...
Antihistamines but not really lorazepam only helps detoxing especially heat hot bath makes it so much worse but I also notice that foods make my head hurt too inflammatory ones

Have you tried warm (not hot)
Baths (with Epsom salts)?

I'm curious about the autoimmune encephalitis diagnosis, too. That should be treated ASAP, and I imagine the diagnosing physician would have a plan for you?

I didn't realize it was possible to have encephalitis but also a normal MRI and cerebral spinal fluid test. This stuck out to me because the intractable, horrific, maddening head pressure you describe sounds very familiar to me (years of my life!). I certainly thought I had encephalitis, and had the symptoms, but the diagnostic tests were clear.

This all coming on suddenly makes me wonder if anything else happened in June. Big mold exposure? Traumatic event? COVID? I know a herx from antimicrobial treatment can set off months of a vicious cycle of MCAS misery (been there!) but I'm just curious about other possible factors. Are you being exposed to any fragrances (including natural fragrances) or other chemicals or pollutants that could be a problem?

Are there circumstance in which your head feels better - times of day, remedies that provide a little relief, etc.? Are you able to sleep? Have there been periods since June that the headache has been better, e.g. when you've been on breaks from antibiotics?

Is your gastroparesis still an issue?

Have you been able to address the damage to the nervous system that these infection can cause? That's what helped me turn a corner with my neurological symptoms as well as MCAS (since the nervous system can trigger the mast cells).

Have you tried topical essential oils, CBD/cannabis, mind-body pain techniques, acupuncture, craniosacral therapy, restorative yoga for headaches? Those all helped me tremendously when I had debilitating head pain and pressure.

There are dozens of mast cell stabilizers out there. Are there some you have not tried? (I'm happy to post a long list.) Some work great for me, and some don't help at all, so maybe there's one that would help you more than the ones you have tried? Are you on a strict low-histamine diet (including beverages and supplements) and anti-inflammatory diet?

Please know that you are not alone in what you are experiencing, even if it feels like you are. Some of us have been there and survived long enough to get better. It's natural to want an escape from this situation - it's exhausting and incredibly demoralizing and isolating and awful! - but it is still possible to get better. Posting here for more ideas was a good step. Keep trying. Continuing to show up for yourself and try the next thing, and the next, until something helps, takes a lot of fortitude, but you are worth it.

saraeli said...
I'm curious about the autoimmune encephalitis diagnosis, too. That should be treated ASAP, and I imagine the diagnosing physician would have a plan for you?

Me - Yes ivig but she said my mcas isn’t stable it would be a bad idea to do any treatment plus I’m scared it’ll heighten the headache even more

I didn't realize it was possible to have encephalitis but also a normal MRI and cerebral spinal fluid test. This stuck out to me because the intractable, horrific, maddening head pressure you describe sounds very familiar to me (years of my life!). I certainly thought I had encephalitis, and had the symptoms, but the diagnostic tests were clear.

This all coming on suddenly makes me wonder if anything else happened in June. Big mold exposure? Traumatic event? COVID? I know a herx from antimicrobial treatment can set off months of a vicious cycle of MCAS misery (been there!) but I'm just curious about other possible factors. Are you being exposed to any fragrances (including natural fragrances) or other chemicals or pollutants that could be a problem?

Me- I have mold exposure in my house not much but I can’t heal mold in the state of inflammation I also feel it could be a structural issue in my head from the AE it can cause complication venous construction or some vascular issue blood flow issue? I’m not sure but I feel like any further treating would be bad bad I’ve tried every mcas treatment except Xolair because i don’t think mcas could cause this severe of head 100/10 pain every day that doesn’t make sense no pollutants I live in Houston tho so it’s not great but I’m in doors all day

Are there circumstance in which your head feels better - times of day, remedies that provide a little relief, etc.? Are you able to sleep? Have there been periods since June that the headache has been better, e.g. when you've been on breaks from antibiotics?

Me - When it’s less painful is when I like don’t eat lol everything makes it hurt especially inflammatory foods I know I have gut issues, but not really it’s been so awful every day more months nothing helps at all I wear ice packs all day and even that doesn’t and I have allodynia from all the pain trapped not sure what the painful lumps are it’s way worse during geo storms or wall weather related barometric stuff and then I’d t say certain opioids worsen it I barely sleep I wake up a lot it’s so uncomfortable my head feels like it’s fills with something it’s strained inside and it constantly changes to pressure swelling squeezing migraine cotton stuff in the front and like a brick is dropped on my head and forehead or being pressed on hard it’s always top of head forehead and temples

Is your gastroparesis still an issue?
Me- No it turns out I have MALS a vascular compression issue

Have you been able to address the damage to the nervous system that these infection can cause? That's what helped me turn a corner with my neurological symptoms as well as MCAS (since the nervous system can trigger the mast cells).

Me- I’ve tried I’m not in a state to do that I feel like I need to be in the hospital due to my severe brain inflammation

Have you tried topical essential oils, CBD/cannabis, mind-body pain techniques, acupuncture, craniosacral therapy, restorative yoga for headaches? Those all helped me tremendously when I had debilitating head pain and pressure.

There are dozens of mast cell stabilizers out there. Are there some you have not tried? (I'm happy to post a long list.) Some work great for me, and some don't help at all, so maybe there's one that would help you more than the ones you have tried? Are you on a strict low-histamine diet (including beverages and supplements) and anti-inflammatory diet?

Please know that you are not alone in what you are experiencing, even if it feels like you are. Some of us have been there and survived long enough to get better. It's natural to want an escape from this situation - it's exhausting and incredibly demoralizing and isolating and awful! - but it is still possible to get better. Posting here for more ideas was a good step. Keep trying. Continuing to show up for yourself and try the next thing, and the next, until something helps, takes a lot of fortitude, but you are worth it.

For your moral external ligament and tendon pain, try Solomon seal, tincture applied topically.

It’s about $12-$20 per ounce dropper bottle retail price today but a little goes a long way.

I have not tried it internally, but many people use it for that since it’s a tincture. I think it’s usually about five drops per ounce of water. If that helps with your brain pressure that would be pretty amazing.

The stuff is completely safe from what I’ve read it’s been used for years all the way back to the biblical days. It’s surprising more people don’t know about its pain relieving properties.

I make my own and it’s awesome, works and saves me money. I have a lot of scar tissue around joints and tendons from years of combined tick infections while doing sports and having injuries, Solomon seal helps.

I'm not sure this is your issue if all the problems were brought in by Lyme treatment, however, if you have ongoing icp issues and tendon issues you should get screened for cranial cervical instability, Eagle's syndrome, ijv compression and chiari. Usually you need a cervical mri to start these, then also maybe a CTA venogram and other scans. Different doctors want different things. There is a Dr B in Long Island NY who knows a lot about these issues but not that much about Lyme. I had invasive traction done to test my icp and if fusion surgery would help. I'm not sure if Lyme caused the issues or not. Also you should know unless you have one of the specialists in these fields read your mri/ct, they're likely to miss your cci/eagles/chiari/ijv compression issues. I think there's a dr H in Colorado who does a lot of ijv and Eagle's surgeries. There's also a Dr P in Ohio thats good with cci. Dr B you can submit your scans and questionaire to and get a report without having to go there. That way you can get an initial reading.

According to Dr R who works with Dr B, I have some cci, ijv compression, Eagle's and mild chiari. I don't know know if Lyme caused these or not. Dr J thinks lyme might have loosened my ligaments causing a number of these problems. My ijv compression seems to be cause my shifted c1 vertebrae. Also cci can cause mcas. I'm not in that much pain just miserable, but Dr R said that mitochondrial disease patients (which I also have) often don't feel as much pain. The pain is a very common feature of all of these structural issues.

Hope this helps.

Post Edited (Bailey) : 11/26/2023 11:16:50 AM (GMT-8)

Ocra powder is also a good binder if you're concerned about detoxing. It's nearly as affective as colestyramine.

Bartonella babe on youtube is also a good resource for MCAS and other such issues. Here's her channel https://www.youtube.com/@bartonellababe

RainyCloud said...
Hey Sarah,

First, please don't give up ok? You can overcome this. You've come this far, please just hold on. ❤️

I saw your pictures on a different Lyme community. By reading your story here, I realized this is you.

Can I ask, what do the doctors say when you showed them the bulge on your forehead? Have they seen it?

The reason I'm asking is because doctors like to deny all our symptoms, unless there's very clear evidence (like what I saw in your pictures), so I wonder if that would make them maybe help you a bit more?

Have they scanned the bulge with an MRI or anything? Can they do a biopsy of it?

We're all rooting for you.

Thank you for your thoughts. I have showed them they dismiss me but I haven’t shown them the bumps now they’ve kind of gone down again but I haven’t done an mri of it or biopsy, not sure if if could be a swollen node? It just feels like inflammation all in my head and veins nerves vessels it’s awful and I can’t find any doctor who can figure this out. I don’t know how to keep going when I’m in pain 10/10 every day and it feels like my head is stuff with poison cotton or something

Girlie said...
Hi Traveler - good to see you here… and as always -offering great advice!

Thank you, Girlie!! I've finally slowed down a bit! Now that I can do things, boy do I!! LOL!

sarah r said...
After trying to self treat Lyme, by mixing a few abx and a potent herbal mixture for about two weeks during June, I developed a severe reaction and treatment induced inflammation that’s lasted months. This started with horrible head pressure, allodynia, migraines, swelling, bulging veins, painful tendons and ligaments on my forehead, brain squeezing, feeling like my head is strained and full of cotton, every imaginable pain and the worst headache of my life, and weird sensations that’s lasted 4.5 months. I thought it was a herx, mcas reaction, flare or that the abx caused Intercranial pressure. However I had a normal CT, MRI, and spinal tap pressure. The pain has been so severe even after stopping all treatment for months. I also started developed mcas symptoms and in October I was diagnosed with Autoimmune encephalitis/pandas, neuro Bartonella, and mold. Things have gotten worse as I’m developing these painful bumps on my forehead like someone hit me with a bat with continuous internal pain trapped in my head that may have caused these bruise like bumps (internal brain injury feeling). I’ve also had severe pain on the top of my head that feels like a brick was dropped on it or claws are digging into my head, ear fullness, and pressure in my forehead like someone is pressing hard against it. It’s awful I have no idea why this is happening. I do have mcas but antihistamines and stabilizers aren’t doing much, and it seems like it’s more than mcas causing this pain. I also know that Bartonella may be driving the encephalitis but I am in no state to kill anything.. I’m not sure why I’m still in this much pain or if I need to look into structural complications from a neurologist. I can’t get this brain inflammation down, I’ve tried everything even a spinal cord stimulator, a lot detoxing, botox, meds it’s unbearable. I’m from Texas and no one here is helping and I’ve been to many hospitals. it all goes back to this treatment induced brain inflammation but no one can figure out why I had this reaction and what’s continuing to cause my head pain. I can’t help but think it’s could be a physical issue like restricted veinous blood flow or some complication from AE after killing bacteria. Has anyone developed ICP or some vein compression or brain issue from Lyme treatment? Im just trying to get to the root of why I had had reaction and why I’m continuing to be in so much pain. This is too complex. Wanna give up and about to. If anyone also has recommendations for doctors who deal with complex issue neurologists, LLMDS, etc

Lab test results:
Elevated cam kinase on cunningham panel
Gad 65 elevated on Mayo AE panel, CSF showed multiple oglioclonal bands, EMG showed slowed nerve response
Neural zoomer showed several brain inflammation markers, anti glycine, anti dopamine receptor 1, EBV VCA gp125
Spect scan showed hypofusion temporal lobe
Bartonella is positive on Tlab
IGENEX showed +23, multiple IND, TBRF, Babesia IND, mycoplasma had high IGG
Mold/marcons positive from real time lab, elevated tryptase (mcas), MTFHR/MTRR, CBS mutations
high IGG for HHV6/7, EBV, HSV 1 on lapcorp
Diagnosed with median arcuate ligament syndrome in May (vascular compression) not sure if this could have to do with something

I've had all of these types of head pain that you listed from Bartonella. At times it felt like tiny knives were being ripped out of the veins in my head, it was torture. I have also had encephalitis just from herxing. I still get these random bumps on my temples when herxing, though they do go away. The top of head pressing down and burning feeling I have had and I suspect it's from the trigeminal nerve being infected. If you had a spinal tap it is VERY possible that it set off even more inflammation, because that's what happened to me back in 2013 before I was diagnosed with Lyme.

I don't know what you took when you were self-treating with herbs, but it's very possible you woke up some Bartonella and now your immune system is going haywire.

One thing that really helps me with neurological inflammation is NeuroFlam from Apex Energetics, my LLMD put me on it:
https://www.apexenergetics.com/neuroflam

Start with 1 pill.

I also recommend SPM Active or SPM Supreme, it's a huge help with brain inflammation. I get these on Fullscript through my doctor. And maybe try some magnesium L-Threonate if you haven't already.

My LLMD is amazing, she's in Chicago. She used to have a neurologist on staff, but I don't know if she does anymore.

Head pain is my worst remaining symptom, at times it feels like cement being pulled out of my brain, which I suspect has to do with my brain lesions.