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

Really long post about my illness:

I've been sick and miserable for over the past
8 years, I still do not even know the exact illness(s) that I am sick with, the doctors I went to were not able to diagnose me and I'm not quite sure myself, but posting it here since the symptoms are very similar to lyme and it's co infections, but it's likely a different but similar illness. I don't think lyme usually causes a constant headache like this from what I've read, at least not by itself. Initially when I got sick I thought it
was a flu or a really bad sinus infection at first, what I thought was a flu
or a bad sinus infection lasted for about 2 weeks, after my immune system stopped
reacting so much to it the symptoms still remain.
When I had gotten sick I had about 12 mosquito bites
on me so it's possible it could be a mosquito born
illness, I might have also been bitten by a tick, I sort of think I did
but I'm not sure since if I had a tick bite
I might have just thought it was a mosquito bite.
When I got sick I was outside in the garden pretty much every day.
At first, for the first month or so I hadn't taken any antibiotics or anything
for it since I thought it would just go away by
itself. Then I took Bactrim for a month, which didn't seem to help at all and
also had bad side effects like really bad abysmal air hunger as the worst one.
At first, when I took sudafed, it seemed to get rid of 99% of the pain at first,
but that only worked for a short time and it stopped helping after a week or so,
and doesn't get rid of any of it at all when I take it nowadays.
After a while I had tests done like an MRI
scan and a sinus scan which didn't reveal anything.
I had gone to the doctor to get allergy shots
since I thought it might have been allergy related
at one point, those didn't help and made my headache
temporarily much worse after being injected each time.
At one point I had taken prednisone for a week
which just made me feel sicker and didn't help
with the headache and it seemed to have made it slightly worse.
I also took doxycycline for about half a year and didn't notice any improvement from it.
I was also taking cat's claw and japanese knotweed at the same time, though not large amounts.
I also have noticed odd scratch marks and/ or indent marks on my body which appear every now and then,
the scratch marks literally look like a cat scratch even though that isn't possible.
I don't recall whether I had any marks on my body when I got sick initially, apart
from tons of bug bites, if I had other marks I may have confused them with bug bites.
Symptoms: The worst symptom is a constant headache
that never goes away, not even for a second for the
past 8 years. Sometimes it's more painful then
others but it never goes away completely, even
when taking pain relievers. Also, if I take something to numb the pain,
it results in a "rebound headache" the day after, the more I numb
it, the worse it gets the day after. Even orgasming causes this rebound head pain,
especially if I do it more than once in a single day.
Other side effects include heart beat beating more aggressively then
normal and sometimes off, getting exhausted
more easily, before I was sick I exercised every
day for about half an hour, now I can hardly
do it for 5 minutes without being exhausted for
the rest of the day, joints are sometimes painful,
brain fog and dizzyness sometimes, sex drive lowered
a lot compared to normal. I've been taking
antibiotics and other herbal supplements to try
to fight it off for a while now but haven't gotten
rid of it. I was thinking maybe I should try a stronger antibiotic, but some of
those can have bad potential side effects, though I'm pretty desperate at the moment.
I'm completely disabled, live with my parents who take care of me, and can barely function anymore.
I feel extremely disconnected from the world now.
I have other things I could post about it too but can't remember
everything off the top of my head, I did write a lot of it down somewhere,
I even made a log where I typed all the things I've taken
in the past 8 years. Here is a list of symptoms:

Symptoms/ Side effects:

Sore neck (sometimes)
worse breathing (especially when taking some abx like Bactrim)
achy joints
body gets sore very easily, and I run out of energy very quickly even when doing moderate things,
physically and mentally
can't exercise well due to fatigue and worse breathing and lightheaded
constant headache that never goes away even for a single second of any day
(this can not be understated as by far the worst side effect, which ruined
my enjoyment of life for the past 8 years. It literally NEVER HAS GONE AWAY
EVEN FOR A SINGLE SECOND IN THE LAST 8 YEARS)
lowered sex drive
ear ringing (sometimes, mostly from antibiotics)
irregular heartbeat
heart rate always faster then it should be normally
occasional eye twitching
occasional jaw pain/ tooth pain
sinusitus (I guess, using a neti pot would sometimes help relieve some pressure but not get rid of head pain)
nausea (especially when taking abx)
air hunger (mostly from abx)
dizziness
anxiety
Inability to enjoy previously enjoyed activities
occasional eye pain
forgetfulness
poor breathing after moving semi- heavy items
Early on, experience a flu like illness, not feeling well since
rashes, probably from ecsema
Rebound head pain after numbing pain the day before
Scratch marks and odd indent pressure marks on body that sometimes appear every now
and then, but are not constantly there
A disconnected with the world ( Depersonalization / Derealization) type feeling which mostly happened in the past 2 years,
I barely feel "there" anymore. I think taking too many herbal supplements at one point
when I increased the dosage for a few months may have caused this, since it wasn't a real problem before I did that.
Although if I take a break from taking herbals and abx for a few days I don't notice any improvement
and feel sicker if I don't take anything.
Sugar and too many carbs causes my head to "flare up", well it's basically a pressure
feeling that makes it more intense temporarily while eating, if I eat food that has
no carbs (like tablespoons of coconut oil as a breakfast) it doesn't do this. Though
doing an extreme detox diet like that is hard to tolerate and makes my headache worse along with other problems)

Things I've tried to try to get rid of it:
Prednisone
Antibiotics
Raw garlic
oregano oil
painkillers of different types (muscle relaxers in particular cause extreme rebound head pain the day after I take them)
xanax
collodial silver
Coconut oil
magnesium
sida acuta
houtunnyia
cat's claw
Japanese knotweed
Andrographis
Amor seco


and some others...

Sorry about the extremely long post, I really needed to get all that off my chest. I tried to be comprehensive but I am probably forgetting some things. Any comments are welcome!

Post Edited (ConstantHeadache) : 7/25/2021 2:55:27 AM (GMT-6)

Hi,

I thought this was interesting:

"At first, when I took sudafed, it seemed to get rid of 99% of the pain at first,
but that only worked for a short time and it stopped helping after a week or so,"

So pseudoephedrine (sudafed) causes vasoconstriction by working on adrenergic receptors.
But the vasoconstriction is especially targeted at the sinus and bronchi areas.

So I'm wondering could it be that you have a lingering sinus infection of sorts?
Chronic sinusitis can be linger for years or decades.
You might not be getting enough oxygen.

It doesn't need to be sinusitis though, there might be some other inflammation in your head which is causing pressure and headaches.

Pseudoephedrine also works on neurotransmitters, which might also be something to look into.

If it stopped after a week your body might have gotten tolerant to it.

Do you remember what dosage you took?

How old are you?

What part of your head hurts, is it a throbbing, dull, or stabbing pain?

Male or female?

Georgia Hunter said...
How old are you?

What part of your head hurts, is it a throbbing, dull, or stabbing pain?

Male or female?

Male, 30 years old, it's a constant dull pain that never goes away no matter what I take for it, I only can reduce it a bit with anti inflammatory's but never get rid of it altogether, but then those just make it worse the day after with rebound pain.

I am so sorry for your suffering. You are correct that constant headache for 8 years is not a typical symptom of Lyme, especially as the main and most severe symptom. I am wondering if you have autoimmune encephalitis as a result of the initial infection/inflammation.

Have you felt any improvements in any symptoms as a result of any of the antibiotics or herbs you have taken?

Have you had any testing for Lyme, bartonella, babesia, or other infections? Did you get copies of the results? What were they? If you had tests and were just told they were negative but don’t have copies of the tests, don’t believe it. Try to get copies.

Have you been to see an LLMD, Functional MD, or any other useful medical practitioner outside of the conventional medical community?

There’s another member who has severe depersonalization and exercise intolerance who only ever tested positive for bartonella, was treated extensively with no improvement, and was looking into autoimmune encephalitis the last time he was on here. Here’s a post. You might want to read through this to see if anything rings a bell for you. His email is enabled, so you can email him.
https://www.healingwell.com/community/default.aspx?f=30&m=4140849

Your symptoms sound largely like bartonella and possibly babesia, but the lack of response to treatment is disturbing. There’s a doctor in Maryland who specializes in bartonella and MCAS. He is considered the bartonella guru. His initials are RM.

Post Edited (WalkingbyFaith) : 7/25/2021 8:53:23 AM (GMT-6)

Welcome to the forum, ConstantHeadache, and I'm so sorry for the misery of your never-ending head pain. Your condition does have many features of tick-borne diseases. You shared a lot, but I am curious about a few more things!

Have you tried other treatments like acupuncture, craniosacral therapy, biofeedback, etc.?

You mention sugar, but have you tried any other dietary changes, such as an anti-inflammatory diet, low-histamine diet, keto, elimination diet to look for food reactions, etc.?

Any chance of a spinal alignment issue, TMJ dysfunction, craniocervical instability, dental infection, or trigeminal nerve dysfunction?

Which parts of your head hurt, and do the pain locations ever change?

Have you done any testing for food allergies, adrenal function, or nutrient deficiencies?

Which supplements are you taking currently, on a daily basis?

Have you looked into mold exposure? Toxicity from mycotoxins can cause a lot of what you are describing as well.

How's your sleep? Do you sleep and wake at consistent times, sleep soundly, have a comfortable bedroom, etc.?

Any effect from electromagnetic radiation (EMF)? Any chance you spent a lot of time with bluetooth headphones, in front of a screen, sleep near a wifi router, live near power lines?

I'm sure that you have tried the basics - no caffeine or alcohol, proper hydration, stress reduction, etc. - but do any of those things seem to make any difference? Can you reduce the pain even a bit with practices like guided visualizations? https://healthy.kaiserpermanente.org/northern-california/health-wellness/podcasts/conditions-diseases/headaches

Any chance you have tried breathwork, Wim Hof, or any other approaches that emphasize oxygenation?

I have a family member who has had a terrible headache for 15 years, which has been very disabling for him. He has a history of concussions, mostly from playing football as a teenager. Do you have any history of head trauma? He saw all the conventional doctors for a decade, and tried all the conventional treatments, but found some relief (about 80%) with dietary changes and supplements from a naturopath he eventually saw out of desperation.

It makes sense that you are looking for underlying causes rather than just treating the symptoms. I don't mean to stress you out with more questions, just getting a sense for what you have tried and how those thing affect you. Chronic head pain was my primary symptom for years, so I have lots of ideas, but don't want to tell you a bunch of stuff you already know!

WalkingbyFaith said...
I am so sorry for your suffering. You are correct that constant headache for 8 years is not a typical symptom of Lyme, especially as the main and most severe symptom. I am wondering if you have autoimmune encephalitis as a result of the initial infection/inflammation.

Have you felt any improvements in any symptoms as a result of any of the antibiotics or herbs you have taken?

Have you had any testing for Lyme, bartonella, babesia, or other infections? Did you get copies of the results? What were they? If you had tests and were just told they were negative but don’t have copies of the tests, don’t believe it. Try to get copies.

Have you been to see an LLMD, Functional MD, or any other useful medical practitioner outside of the conventional medical community?

There’s another member who has severe depersonalization and exercise intolerance who only ever tested positive for bartonella, was treated extensively with no improvement, and was looking into autoimmune encephalitis the last time he was on here. Here’s a post. You might want to read through this to see if anything rings a bell for you. His email is enabled, so you can email him.
https://www.healingwell.com/community/default.aspx?f=30&m=4140849

Your symptoms sound largely like bartonella and possibly babesia, but the lack of response to treatment is disturbing. There’s a doctor in Maryland who specializes in bartonella and MCAS. He is considered the bartonella guru. His initials are RM.

I'm not convinced it's an auto immune response, as I took Prednisone for a week by itself without any other things in my system and felt sicker after I was done, it didn't help at all and just made me feel worse, but I'll check out that thread anyway. I had a test for Lyme but it was negative, although it was just a normal test. I wasn't tested for Bartonella or Babesia though. I would like to be tested for more illnesses. I'd like to see a LLMD or similar, I don't think there was any nearby when I checked last but that was a while ago so I'll do it again. My body does respond to the herbs and antibiotics in a very noticeable way, some of them are quite strong on my body, but it isn't getting rid of the headache or really seeming to help unfortunately. I've been trying a lot of different herbs but without success, other than the fact that my body does noticeably react to many of them, often strongly. Even a single drop of oregano essential oil can produce a pretty strong effect on my body, I'm not sure if it's a herx though.

saraeli said...
Welcome to the forum, ConstantHeadache, and I'm so sorry for the misery of your never-ending head pain. Your condition does have many features of tick-borne diseases. You shared a lot, but I am curious about a few more things!

Have you tried other treatments like acupuncture, craniosacral therapy, biofeedback, etc.?

You mention sugar, but have you tried any other dietary changes, such as an anti-inflammatory diet, low-histamine diet, keto, elimination diet to look for food reactions, etc.?

Any chance of a spinal alignment issue, TMJ dysfunction, craniocervical instability, dental infection, or trigeminal nerve dysfunction?

Which parts of your head hurt, and do the pain locations ever change?

Have you done any testing for food allergies, adrenal function, or nutrient deficiencies?

Which supplements are you taking currently, on a daily basis?

Have you looked into mold exposure? Toxicity from mycotoxins can cause a lot of what you are describing as well.

How's your sleep? Do you sleep and wake at consistent times, sleep soundly, have a comfortable bedroom, etc.?

Any effect from electromagnetic radiation (EMF)? Any chance you spent a lot of time with bluetooth headphones, in front of a screen, sleep near a wifi router, live near power lines?

I'm sure that you have tried the basics - no caffeine or alcohol, proper hydration, stress reduction, etc. - but do any of those things seem to make any difference? Can you reduce the pain even a bit with practices like guided visualizations? https://healthy.kaiserpermanente.org/northern-california/health-wellness/podcasts/conditions-diseases/headaches

Any chance you have tried breathwork, Wim Hof, or any other approaches that emphasize oxygenation?

I have a family member who has had a terrible headache for 15 years, which has been very disabling for him. He has a history of concussions, mostly from playing football as a teenager. Do you have any history of head trauma? He saw all the conventional doctors for a decade, and tried all the conventional treatments, but found some relief (about 80%) with dietary changes and supplements from a naturopath he eventually saw out of desperation.

It makes sense that you are looking for underlying causes rather than just treating the symptoms. I don't mean to stress you out with more questions, just getting a sense for what you have tried and how those thing affect you. Chronic head pain was my primary symptom for years, so I have lots of ideas, but don't want to tell you a bunch of stuff you already know!

I haven't tried acupuncture, craniosacral therapy, or biofeedback. I did do a keto diet for a month to see if it would help, but didn't notice any improvement other than losing some weight. However, when I was doing the keto diet I was not taking much herbal supplements and was mostly trying to see if the keto by itself helped, it's possible if I did it while more frequently taking herbals it could have helped, I don't know.

I fasted for two days once but it didn't help. I generally try not to eat anything too sugary, never any sugary snacks, (when I had sugary cinnamon rolls when I was sick in the first month it made my head pain flare up a lot) though I might have too many carbs. Even having food with carbs but almost no sugar makes it flare up some (by flare up, I mean, it's basically a sort of oxygen deprivation feeling, that also makes my head pain worse temporarily) If I eat raw organic coconut oil by itself for say breakfast it doesn't make my head flare up at all like with carby or sugary foods, I've been having fried eggs and sausage breakfast by itself sometimes and that doesn't seem to make my head flare up either, but if I go too long without carbs my body feels awful after a while. I tried a coconut oil only diet for a day but I felt like hell by the end of the day and couldn't get any sleep and just cheated and ate some chips to help me sleep. I haven't had any caffeine or alcohol at all in years (even just a small amount of alcohol in some liquid herbal supplements seems to make me feel a bit worse the day after)

Not sure about spinal alignment issue, TMJ dysfunction, craniocervical instability, dental infection, or trigeminal nerve dysfunction, I'd have to look into those.

The head pain is hard to locate, I'd suppose it's pretty much the entire head area, if I lay on the back of my head it can make it worse so I try to keep it up. Also get sore back of neck often. I wouldn't say it changes areas, it's pretty much constant throughout the entire head, but I suppose the back is probably the worst, also it's painful if I put too much pressure on the sides of my head.

I'm not really taking any consistent thing on a daily basis, more or less trying different things in kind of a scattershot manner at the moment. But things that I've taken in the last two weeks include: Cat's Claw, Artemesia, Coconut Oil, Houtunnyia,Cbd, Andrographis, Turmeric, various herbal fruit teas, and Stevia.

Not sure about mold, as I've taken supplements that should have likely helped with that if I had a mold problem. But I haven't noticed a mold problem in the house or anything. My sleep is fine for the most part, although, if I do get too little sleep, or too much sleep, it makes my head pain worse. Also, I tried taking melatonin for a bit, but it always made my head pain worse the day after, it was the same feeling as when I get too much sleep.

I don't use bluetooth, I spend pretty much all day in front my computer, but that wasn't the case when I was sick initially, but more of a thing a year or two later after I was already sick. I was getting out more before covid but now am pretty much just house locked. I think I sleep far enough away from the router, I don't know about power lines. I haven't tried breathwork or Wim Hof but will look into it.

Not head trauma in particular, though I did get punched in the nose hard once as a kid, it didn't break my nose though, and that happened about 8 years before I got sick. I never played football or did anything like that.

If sida and clindamycin helped, maybe it’s babesia like dcd said.... did you try magnesium for the pain? It helps nerve pain for me, better than pharmaceuticals like gabapentin.

magoo2 said...
8 years that sounds terrible. Have you gotten a dental thermogrophy?
Have you ever been checked by a biological dds?

No, but I'll look into it.

running wild said...
When you mentioned you get "sore on back of neck" when you lay on the back of your head - it is a stiff neck or different?

It's like a pressure thing, if I lay the bottom back of my head against say a chair it makes it more painful. It's more the back of my head but close to where the neck area is then my neck. My neck isn't stiff to the point where it's really painful to move it or anything, unless I exert myself too much by say lifting and moving boxes of things, I have to be careful not to exert myself too much, but it is slightly sore normally, just very tolerable compared to the head pain.
Also, if I put too much pressure on a vein on either side of my head that makes it more painful as well.

Have they checked your intrathecal pressure?

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.