Link with Lyme and Chronic Daily Headache???

""" My daughter was 12 years old 8 months ago when she was playing soccer and developed what we thought was a virus, then sinus infection, then this ongoing headache. She had a CT of her sinuses and eventually a CT of her head. She also has TMJ type symptoms. She was seeing an orthodontist, who wasn't really sure about the tmj or jaw pain. She had 2 retainers when this started, but after getting a second opinion was told she didn't need them and throw them away. She was told to try a night guard. It hasn't helped her. We ended up at a Ped. Neuro who tried Amytriptaline, Topamax and Depakote, then told us we would have to find another Neuro because he wouldn't just randomly try medications. WE have to wait till Oct to get in for a second opinion with another Nero. In the mean time she has stomach ulcers and deals with a lot of stomach pain. Her Gastro specialist put her on Celexa which is in the family with Amytriptaline. It has only been 2 weeks so far, but hasn't helped anything yet. She is extreamly tired. She has to get to bed early and her head is worse if she doesn't sleep good, which is often. Her headache is worse with storms and barametric changes too. She has seen the chiropractor, physical therapist, cranial sacral therapist, and is trying hippo therapy(on horseback). She was so bad in the beginning that she missed 5 weeks of school and barely got out of bed. Her body was suffering from lack of activity. WE finally got her back in school 1/2 days, had a tudor for a while. We've almost survived the school year. Next week it ends and I'm really hoping we can find something to fix this stupid headache. I want to scream for her and everyone else that can't find an answer to this. I can't get the dr's to even do bloodwork. Her pcp says it is up to the Neuro, but he is non-evasive and doesn't believe in test. He says it is Chronic Daily headache, no known cause, and no known cure, just learning to cope. I'm not happy with that for a 12 year old. She did just turn 13 this month and I'm hoping her hormones will settle down and maybe she will grow out of it. I'm going to try a very strict, all natural diet this summer.

This has just affected her whole life. She has no real friends. When school gets out not one girl will call her all summer long. I'm sure of this because they haven't called the house in 8 months since this started. She just needs a real friend. Mom can only do so much....you know.

I hope this has helped a little. Elaina's pain did start out right between the eyes and forehead. Her eyes have been bloodshot for 8 months. The pain now does move around and she describes it as pressure all over. She has had her eyes checked, and we cut her lovely hair off 10" for locks of love to make it easier for her to care for. We've cushioned her bed, got lavender scents, celtic music, and fans. We are trying everything we can think of and control. I'm not giving up on this. I think if we could just break this cycle for a bit it would help.

I'm new to the board so I will be reading and trying to respond when I can.

I hope you can find some relief this summer as well and find comfort that you are not alone. If enough of us pool together, maybe we can find some common thread and cure......

Any ideas if there could be a link???

Becky

The headache and extreme exhaustion is very Lyme symptom in nature. I personally don't know about the TMJ but it is possible as Lyme can often cause joint pain that is Arthritis like in nature.

The area that you live is in close proximity to the highest number of reported cases (New York, Connecticut, New Jersey, and Pennsylvania) so your risk is much higher than it would be elsewhere in the US. It is completely possible that it could be Lyme disease and it would definitely be a good idea to have the test done. If you are able to find a doctor that will do the test make sure it is done at a reputable lab and that the test conducted is a Western Blot. Igenex is recognized by most to be the best (www.igenex.com) and I believe most (if not all) people on this form would recommend them as the place to have your test sent.

That said, odd things can be related to the hormone changes that happen during puberty, including seizures, increase or decrease in allergies, and other forms of odd heath changes.

I hope you get the results that help you the most. Lyme positive (as unpleasant as that is) will at least give you the correct course of action to take and the disease is treatable. If your daughter ends up with a negative test for Lyme then God be with you trying to find the correct answer.

Best of luck,

Bob

Good luck and take care, Denise

while youre at it test ALL coinfections at same time--any one of them can cause those sx--Evan had the same EXACT thing going on--we even did sinus surgery and he was worse after!!

turned out to be Lyme, mycoplasma and Bartonella all along ( going back to my pregnancy with him!!)and I shoulda known better having been in Lymeworld so long myself!!

ask your daughter to join Lyme Warriors on yahoo--very well supervised and for tweens, teens and young adults with Lyme--even if she turns out to not have it they can be a great source of support for her and help with tips etc esp. on how to deal with "disappearing friends:

http://health.groups.yahoo.com/group/Lyme_Warriors/

that seems to be very common--Evan has been homebound for 3-4 yrs and ALL his friends have abandoned him--some even passed rumors we moved, he died, or has AIDS!!!others Evan dismissed after the third time of " you cant still be that sick"

its hard being a parent of a sick kid

as for her age-- buckle up the bumpy ride aint over--I raised 2 boys ( Evan now 18, his bro age 25) and a girl now 23 and let me tell you there were many YEARS I didnt "like" her and sent her to her room for her own health ( so I wouldnt kill her) LOL we finally settled down when she was 17 and already in college

but now we get along great--speak for hours on phone while she is away at grad school and in the field ( she is an anthropology PhD student and goes to exotic places--this fall-Africa)but whe n she is home visiting after about 4 days we are again arguing--its the Mother Daughter thing

and listen to your gut--always--if you think somethings wrong they havent yet found--keep looking and demanding--and get that neuro appt moved UP but be aware that almost every neuro in the US will deny Lyme these days with the politics the way it is

also a great group is the Lyme Aid Parents site--very experienced and helpful with networking--its at http://health.groups.yahoo.com/group/Lyme_Aid_Parents/

good luck and if you need anything feel free to email me at finrussak@aol.com

Finette

I am deeply sorry that you're daughter feels so bad. I'm sure you wish that you could bear the pain instead of her. It breaks my heart to hear of children suffering.

It is suspicious of Lyme. I would definitely demand that she be tested. Another good lab is Immunosciences, Inc. That's the lab my doc used. He said it gives more information. You can google it and read about it. Igenex is the most talked about lab. We had to pay for my labs and my treatment out of pocket. My doc was 'out of network' . Lucky for my insurance company. Oh well, it wasn't bad at all, especially after hearing about what others have paid.

I suffered from clobbering headaches, too. The headaches would last about 10 days in a row. I'd get a break of 3 or 4, then get another headache. I had many other symptoms, too. It was a TERRIBLE time. However, I was treated (alternatively) and I am better.

The first thing to do is to continue comforting your daughter. It sounds like you are doing everything possible. The thought of her putting up with a headache every single day with no end in sight is daunting. Is she old enough to try a migraine medicine such as Relpax? I would take relpax, immitrex, etc and these meds would take the edge off my headaches(most of the time).

Next, like you said, insist that she be tested for Lyme and coinfections. It sure sounds lymie to me. If it is Lyme, there is hope to get better.

God be with you,

Connie

She likes her pcp, but we need to move forward and stop sitting around waiting for some new symptoms. Grr. I get so mad I want to make her feel better.

Thanks so much for your emails. I'm told her about the lyme warriors. We will both get on tonight and try to get her in contact with some new friends. This site has been a God Send. Even if it isn't what she has, she has similar symptoms and can make friends.

Becky

Good luck and get to the bottom of this. Something is wrong. We are not meant to suffer like this.

Peace,

Connie

My labs totalled about $750.00. I'm glad I have my labs.

Post edited by: lymie, at: 06/14/2008 10:17