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        New Message Board Archives >> Jan-Mar 2003 >> Lyme and headaches?
        
(Message started by: Tincup on Jan 27^th, 2003, 12:50am)

Title: Lyme and headaches?
Post by Tincup on Jan 27^th, 2003, 12:50am

Hi,

While researching tonight I came across your site. I am so sorry to hear of so much suffering going on with headaches. I do wish I had a magic wand that could fix everyone so no one would be in pain....

I only stopped by because I thought maybe I could help?? It is late and I am tired... but I couldn't "hit the hay" till I at least tried to help out.

I have been working with folks with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, etc. for a number of years. Most of these patients suffer from headaches which are quite severe, especially in the children. Most of these patients also were misdiagnosed for years with a variety of diseases or conditions. Normally their blood tests that are typically run (CBC, etc) all showed normal readings... and even with neurological symptoms their spinal fluid did not show infection. This took them down a long path of misdiagnosises.

Once they were correctly diagnosed they were able to be treated for the infections which caused the headaches and many have found relief. Unfortunately, many were only offered poor tests for Lyme and the results originally were negative. Most folks by the way, didn't recall a tick bite and less than 50 percent of "Lymies" ever got a rash.

I was hoping those of you who are outdoors quite a bit... or who have been sick for years might want to look into Lyme as a possible cause for the headaches you have?

I can't say that is for sure what is causing your headaches... but I would think it would be worth while to consider the possibility? I really don't like to see anyone suffer.

If you are interested in more information... there are a number of places to go for information. You may want to start with LymeNet.org to start your search. There are some great folks there at the flash discussion board who will help in any way they can. They are a special "family" of folks helping others.. just like what I see here.

Good luck to all. I hope you find relief. Take care of you.

Title: Re: Lyme and headaches?
Post by Ted on Jan 27^th, 2003, 3:03am

Thanks Tin. That was actually quite cool of you to check in and offer that suggestion as there are a number of people here who don't really have clusters. Hopefully they'll check it out and see if maybe they have lyme disease. One of the differences in the headaches is that Lyme is a very bad headache while "cluster headaches" is a misnomer. What we have is more facial and in the optical region. So, ours is in a different area but also very bad.
Thanks,
Ted.
PS. On a side note, Lyme does have pretty bad headaches, from what I understand. But the other reason "cluster headaches" is a misnomer is because of what a true c-head feels. After you read this try and close your eyes and imagine it. You won't be able to but try. A red hot seering pole being slashed across your cheekbone and returned to destroy your flesh. It remains there for 1-4 hours. It gets pressed against your nostril to equal the pain but the addition of a 300 lb man adds to it by repeatedly kicking your cheekbone and nose.This is your final warning that some real pain is yet to come. Suddenly you feel his steel-toed boots bash your eye in. Molten lead is dripped into your eye as a shrply-fanged viper eats away at the same eye, releasing a strong acid-based venom. His twin eats away at your eye from the inside, also releasing the venom.
This happens several times per day. Every day. Every week. Every month. Every year. So, in our case, "headache" is a misnomer. I'm sure by now you must think I'm being over-dramatic. But I'm not. And I still say anyone not fitting that description should go with tincup and hopefully getting yourself cured. We can't help you.

Title: Re: Lyme and headaches?
Post by suzy617 on Jan 27^th, 2003, 5:53am

Hi Tincup and thank you for posting. Maybe there is somebody out there that you have helped.

Ted, I always wondered what the beast should really look like. I think you've described him quite accurately.

suzy

Title: Re: Lyme and headaches?
Post by Opus on Jan 27^th, 2003, 7:00am

Tin,
I thought I had Lyme a few times because of the horrible joint pain that I had. Turned out to be sleep apnea. My wife got lyme and when it didn't seem to get better she thought she was chronic. She was diagnosed with fibromyologia. We too suffer from misdiagnoses, usually treated for sinus infections or teeth problems. Thankfully alot of us can use the miracle treatment Imitrex.
Opus :P

Title: Re: Lyme and headaches?
Post by Karla on Jan 27^th, 2003, 9:16am

Thank you for caring so much and for sharing with us. You may have helped someone here.

Title: Re: Lyme and headaches?
Post by Mastifflvr28 on Jan 27^th, 2003, 1:09pm

Good vivid description Ted,
Thanks
Mast

Title: Re: Lyme and headaches?
Post by Tincup on Jan 27^th, 2003, 7:48pm

Well.. looky here.

Lots of nice replies. You all are a nice family. Thanks for responding. (By the way... I am not real "computer literate" but I like you site format and pictures and the easy way to get around the site. Very inviting and comforting too).

Ted...

The descrption you gave tells me you have had the unpleasant experience of having to "hang out" for long periods of time while enduring this awful pain. I am so sorry. You describe this pain quite well. I also have my own descriptions of various pains after fighting Lyme for years... and I know what you mean... and no.. your aren't over dramatic... you have suffered many moons to be able to see the pain in that way. I hope you have found some relief.

Suzy...

Thanks for the kind words. I do hope someone may look into Lyme a bit deeper. It is called the "great imitator" because so many things can be caused by these stinking spirochetes. And many conditions or diseases that folks hadn't found the cause for... or a cure for... can be helped with the antibiotics given for Lyme. I was hoping this might be the case for someone here???

Opus...

Wow... folks with Lyme do have all of the conditions you mentioned. They didn't know that before.. but new technology and research has be able to prove it. Nearly all chronic Lyme folks have sinus problems, and teeth problems fro the spirochetes invading those areas. Sleep apenea has been linked to Lyme.. and a big study on chronic Lyme just proved fibromyalgia is often Lyme. Nearly all Lyme folks have either joint pain or fibromyalgia pain. Often doctors say to patients that the Lyme is gone and then folks get fibromyalgia.... when actually the infection wasn't kicked and this is the way the body responds. I am going to try to post a link below in case you have time to check into it. there are sites that say "Lyme misdiagnosed as..." You can link all of the things you mentioned to Lyme and check them out that way... if you care to...

Karla,

I have a "favorite niece" named Karla... but I don't get to see her too often. Thanks for the warm welcome.

Mast,

You are right... great picture that he painted.... actually too vivid. I am still cringing! YIKES!

If anyone would like to double check on some of the new "discoveries" in the world of Lyme... this is a site we share for more information. If nothing else... coe by and just say "hey". I think some of the folks are on Imitrex.. a drug you mentioned earlier. Many Lymies have bad headaches... and perhaps they could use some advise from the experts here?

Nice to meet you all. I do hope your pain is lessened and you have some joy in your life.

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Hope the link posts and works??

Take care of YOU!
TC

Title: Re: Lyme and headaches?
Post by Jarvis on Jan 27^th, 2003, 11:05pm

aaaaaaahh Ted, how come you get off so easy?? ........ On the second reading I find your description rather valid especially after the final warning. Damn I forget these suck sometimes....... Thanks tincup.

Title: Re: Lyme and headaches?
Post by Opus on Jan 27^th, 2003, 11:19pm

Yeah Ted, how come you only described a Kip 7. Is that because words cannot describe a "10" ? If I had to do it I would have to learn Klingon first.
Opus :P

Title: Re: Lyme and headaches?
Post by Ted on Jan 28^th, 2003, 12:19am

Sorry. I just get bored sometimes.

Title: Re: Lyme and headaches?
Post by cbolony on Jan 28^th, 2003, 4:30am

Ted great post printed it out put it on the frig door.Now
I know who is kicking my ass and I can't see him

Title: Re: Lyme and headaches?
Post by jmorgan52 on Jan 28^th, 2003, 7:51am

Hi Ted.

Seems ages since I saw any posts from you. Hope you are well. Have you had any sort of relent from the CH in recent times? Do you always just tough it out?

In your own sweet way :-X you actually helped me a lot last year with your cutting comments. Now going into my 10th month totally PF. Sorry to brag but....

Thanks for reminding me what it was like for me last March/April ;D

J