posted
I have had daily unrelenting head pain/ pressure for 2 years now - and I am a previously very healthy 38 yr old female (an exercise fanatic prior to becoming ill).
This ALL came on very quickly in Feb 2003 and i was unable to work within 3 weeks of onset due to the fatigue and brain fog that came with it. (I was in Technology design and I didn't even know WHAT I was doing anymore....)
I was a workaholic and indoors most often - I don't remember EVER being bitten by a tick or having a rash. One day I could think and function as usual, then the head pain started and worsed upon becoming upright each day, then the shortness of breath followed, tachycardia and then one day my MIND WAS JUST GONE and it has never returned.
Just like you guys, I've been to about 20+ ducks in 2 years and most are clueless...I've been on oral doxy, IV abx for about 6 months and ALL did nothing - my head pressure and fatigue are as strong as ever.
Igenex tests - twice - no positive bands, a few equivocal, most negative. Maybe this isn't lyme - but what the *ell is it?
CFS......I suppose.
Anyone taking narcos for head pain?
Posts: 21 | From East Texas | Registered: Jan 2005
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Just wondering which bands came up equivocal? Some bands are specific to Bb. Alot people here don't have positive WB, its more of a clinical diagnoses.
Another question would be... are you having any herx's on the abx?
Have you been tested for any co-infections? If they are not addressed you won't get better.
Good health, Lisi
Posts: 986 | From Michigan | Registered: Dec 2004
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2. have you had an immunologist do a highly thorough checkup? you could have immune-deficiency disorder, like primary immune deficiency. http://www.niaid.nih.gov/factsheets/pid.htm
there is a lab called MDL (www.mdlab.com) that does a dna (pcr) test for candida. they check for six strains. you can you have pcp order this.
CFS is junk-psuedo medical science. don't bite that line.
you could very well have recalcitrant lyme. your brief list of symptoms could certainly paint that picture but your complete non-reaction to abx does not bode well.
hence i would rule everything else out first before advancing with lyme treatment.
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I would rule out everything WHILE treating the lyme. I doubt there would be anything more frustrating then to drop lyme treatment, go through a gazillion tests, end up worse and back in the same boat.
Now, onto this head pressure. This is VERY VERY common in Lyme disease, as it is, I will agree, in a million other things.
Im a huge sufferer of head pressure and neck pressure. In fact, the way YOU presented with
lyme disease was the same EXACT way I presented with lyme disease. I was at work fine one minute, and the next minute, gone.
Does it make me question my LD diagnosis? Sure. Does the fact that my tick bite was 14 years earlier make me question the LD diagnosis? A bit.
BUT, I have found this out when playing russian roullette with even the best top notch LLMD's. If you have a persistent symptom that is not going away,
ask them "By what process is the lyme doing this". I asked that question for a year and a half regarding my inability to walk around
without getting sick AND getting head pressure/neck pain. In fact, there were times during my treatment that the head/neck pain and pressure would come back ,
and I was surely not assumed. NO LLMD could answer me by what process the lyme was making me sick WHEN I walked around WITH head pressure and neck pain added to it.
So, what did I do? Looked for other answers, while continuing to treat the lyme.
If you have had no response to abx at all, then yes, I would say after 6 months of abx, there are other things to look into.
How about ANOTHER tick borne illness? Such as babesia? Bartonella? Erlichia?
Doxy doesnt treat babesia and its only said it small circles that it MAY help bartonella. It IS used for erlichia.
What about candida? What about Autonomic Nervous system dysfunction. For me, I just foudn out that is
the process by which my lyme was makign me sick when I walked around AND giving me head and neck pressure.
I am just in the early stages of treatment with that, but let me tell ya... the addition of 50 mg of zoloft nightly has WIPED OUT my chronic ( and I do mean chronic ) head pain and pressure. The only time it flares is during my period.
I can live with that.
I would NOT suggest a LP for lyme disease, but surely to check for other bacterias as well as fungus is an option. Not to mention, if you have increased intracranial pressure, a LP could RELEASE that and end the horrid headache. Again though, Im not a fan of LP for lyme.
What about viruses? Have you tried an antiviral? The herpes family of viruses, including zoster, can surely turn up that head pressure, or even cause it.
Are you doing a complete yeast free diet?
And heres another one: ASPARTAME. Do you drink diet drinks? Equal, nutrasweet, SPLENDA? NIX it if you do. Check your chewing gum also. Anythign with phenaylanine, you are going to want to avoid.
But NIX ANY diet drinks, now. ALot of OTC meds have aspartame in it. Check them out.
I hope this helps. Lyme is not easy, and its not fun to get rid of, but yes, by all means, if you are not responding, SOEMTHING is NOT being addressed.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
I had head pressure too. I would keep treating the (lyme)if thats what it is? You did have equivical. Do you have some of your wb test results you could post?
Have you had a 3 day urine test done while taking high dose of abx? Also try having one of your abx switched to ceftin,or spectracef,omnicef and if you could get your hands on it dynabac it worked real well for me. Drink plenty of water and take plenty of acidophilis to keep yeast down maybe even some diflucan.
[This message has been edited by treepatrol (edited 05 January 2005).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Is it the type of head pain that your head feels like it's been hit with a hammer or it's being squeezed by a vise? Does scalp hurt when you touch your hair??
I had this.
I really think it's heavy metal buildup - toxic mercury poisoning. Do you have a mouth full of fillings? Eat lots of fish? Lots of us Lyme folks never really get better until we address this issue.
Maybe GiGi will bring up one of her fantastic posts on this topic. If not, you can do a search on GiGi's username and subject 'Metals' or Chronic Neurotoxins.
Welcome to Lymenet.
------------------ Julie G. ___________ lymeinhell
Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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liz28
Unregistered
posted
Hi, sorry you are going through this, but congratulations on being strong and finding medical help.
I was working as an editor when I got bit, and within three weeks, words were vanishing off the page, and I couldn't read train signs, figure out street signs, remember names and numbers. In other words, something like you experienced.
First, please be aware that your story is par for the course. Some very smart, and/or educated, and/or assertive, and/or athletic, together-looking, successful people have had just as much difficulty getting appropriate treatment. There is nothing about the way you presented yourself, or lived your life up until now, that caused you to spend two years on this. If anyone tells you different, get up and walk out the door.
Since everyone's experience is different, I can only share my own. It turns out I have Lyme, babesia, and bartonella. If you do have a co-infection, it can change your Lyme symptoms and make them harder to diagnose.
You must treat babs first before you can recover from the other two, and the best way to learn if you have it, is to try artemisinin and see if you have a herx or feel better. Artemisinin is cheap, painless, harmless, and over-the-counter.
Many people do find that to effectively treat Lyme, they must use a combination of abx, not just one. I cannot speak much to the alternative treatments, although I did take DMSA for high mercury and lead levels.
If you take rocephin, you should be on actigall to prevent gallstones.
Everyone has pet abx they rely on and defend like family. Mine are omnicef, ketek, mepron, flagyl, minocycline, and now septra for bart. If you do a search, you will find tons and tons more to choose from.
posted
ALready tried the peppermint oil - no help. The pain is 'inside' my head not on it.
Any other pain med ideas....anyone?
Thanks
Posts: 21 | From East Texas | Registered: Jan 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Ice packs help. I used to fall asleep with a little ziplock bag filled with ice on top of my head. Hot showers, alternating with 30 seconds of cold water helped.
Getting through Lyme and Bartonella treatment helped the most, but I really don't think it's the only thing going on. But if you've already had 6 months of treatment, I'd venture to say it's a buildup of neurotoxins and metals.
After 3 months of antibiotic treatment, my LLMD had me start detoxing using foot detox pads. They pull the toxins out of your body through the sweat glands in your feet. After 10 months, these things are still black and oozing with stuff every morning. www.podipatch.com
My scalp is still a little sensitive, but I can actually wear a ponytail for the first time in a year and a half!
Another treatment that helped was MicroCurrent Therapy. Not sure if your LLMD knows anything about it, or can refer you to someone who does it. I was fortunate to have my LLMD work with someone who does it - and my insurance actually paid for it (without my even getting pre-approval, no less!!)You can do a search on the internet for info about it.
------------------ Julie G. ___________ lymeinhell
Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
I stoped caffiene . Cold turkey. One of the stupids thing I have ever done. 13 days of non stop xxx pain. I never realized how strong caffiene is. But it was well worth it . I hardly ever get headachs now and they are not near as bad. Just dont do the cold turkey thing. --- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hi Head Pain,
Welcome
Have you tried Demerol tablets?
I have to take a Phenergan 25 mg. and let it settle at least 20 minutes (in order to counteract any nausea the Demerol might cause) then take the Demerol 100 mgs.
If it is just a migraine I would take the Phenergan first, then an Imitrex nasal spray.
Then, if no results within an hour take the Demerol.
If it is the all over head pressure thing or the intense front of the head pain (not specifically behind my eyeball) I do the Phenergan then Demerol. Then, if I am still in agony a couple of hours later, I take a 60mg. intramuscular injection of Toradol.
By the time I get to the Demerol, though, that usually does enough to make the pain bearable. As long as I stay down and don't get up for anything during this time.
Sorry you've got these headaches. But, at least you're in good company
------------------ Tabby
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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posted
I have a question. You stated you were an avid excerciser, do you take any diet products? Soda, HEADACHE medicines, splenda, equal, nutrasweet, neotame, gum of any kind, mint strips (e.g. Listerine Mint Strips, yoghurt, cold medications, flavored waters, fruit juices, any sugar free products, mints, slim fast, protein drinks, weight watchers products? All of these products, plus about 9000 others, carry ASPARTAME. This is a poison that has 92 side effects. Headaches are one of the major symptoms. Most of these products do not list it in their ingredients. Twice, I had a headache that lasted two months. It felt like someone had taken a baseball bat and slammed it across the bridge of my nose. My entire head ached, nothing helped, went to ER a couple of times, they were beginning to think I had a tumor.. ots of testing, long story short, it was aspartame poisoning. I chewed exTra gum, loved that powerful long lasting taste, but it was destroying my body. I knew about diet soda's being very bad, but I didn't drink anything like that, they always gave me a headache and/or stomach ache that lasted for hours. I was lucky in finding out about aspartame. My headaches were worsened by the fact that a good deal of headache medicines now put aspartame in their products to make them more palatable. Let's use a sledgehammer to calm to headache!! We are poisoning ourselves and we don't even know it. After stopping the aspartame, my migraines and almost daily dull headaches all but disappeared. My aching arthritic knees and joints became calm and peaceful. Yes, I still have arthritis from the lyme, but it has gone from a pain scale of a constant 10 down to about a 2. WE ARE WHAT WE EAT. I am not stating that any of this means we don't have lyme, we Do. What I am saying is that a lot of what we ingest, poisons our already struggling bodies. We have little defense against these poisons that we unknowingly ingest due to our already weakened immune systems. We suffer, we try to help ourselves, and we ingest more poisons to our sick bodies and we get sicker. Please, everyone here, do a web search and you will find many sites on Aspartame. Check who paid for the studies, most positive tests were done by those that own an interest in the companies. There is an aspartame group in the yahoo groups. Check it out, it provides many links to excellent aspartame websites. Removing this poison from your body could help tremendously in your recovery process with your disease.
Posts: 17 | From Hyannis, MA, USA | Registered: Feb 2002
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posted
I have been taking narcotics daily for a couple of years for what I thought was TMJ but now wonder if it is Lyme. I beat myself up over it all the time but all NSAIDs make my GI system hurt worse than my head. I know there is a potential for abuse but when you're in pain, you're in pain. I met someone who crushed his oxycontin and then snorted it and that's what I would consider abuse!
Posts: 13 | From NE,MD USA | Registered: Jan 2005
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