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NDPH ForumsIntroductions & Personal StoriesPersistant Headache for 4 Months, Many Questions
01/24/2012 02:49 AM

Jess23
Jess23Posts: 75
Member

I am so pleased to hear you have your diagnosis and I wish you a speedy recovery Smile

I wish Lyme was the answer for more people. Of course, no one wants Lyme disease but when you've been dealing with a headache for months and years, desperation would make most of us eager for an answer and for something more treatable.

My story is, in some ways, quite similar to your own. I had headaches for a few months before the onset of my constant headache, which started around April/May 2011. I too can't be sure of the exact date, I was getting a lot of headaches and I was going out and drinking, so it's kind of blurred when my headache became constant. This history is different to the typical NDPH patient, who, I understand, can pin point the exact date, and even minute, of the onset of their headache.

I live on a farm in an endemic are and in the summer before my headaches began, I spent probably every day outside in the countryside; so it is very possible that I could have been bitten by a tick. I had been on doxy for a few weeks, in case it is Lyme, but stopped as it made my headache significantly worse. I recently started taking the doxy again and have not yet noticed any changes in my headache.

I personally do not think I have Lyme, but it would not be impossible that I do have it. I do think it is a route that every NDPH sufferer should go down, if only to rule out.

Hope you feel better soon Smile

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01/24/2012 07:38 PM  Top

tortoisegirl
tortoisegirlPosts: 2798
Group Leader

Yay! So did you not have a problem finding a Lyme literate doctor? I wish you luck in the treatment plan. Unfortunately I hear of some folks still struggling for months or years with it, but I think its still a much better chance of recovery (and full recovery at that) than NDPH alone for those who have it. I would love to be told its Lyme. Smile Is the cost reasonable for the doctor? I've always heard its not (and I already checked and no one in WA state takes insurance who is considered Lyme literate) so that has been a hindrance for me pursing it. Also, I've read that for some folks who have had it so long, they need IV antibiotics, which not all doctors will do, and thats when it gets expensive too. Hopefully more neuros will start to recognize Lyme as a cause for some of us. I know none of mine mentioned it, and the one which I did ask about it took the more typical doctor's response that it would be more obvious if it was Lyme (remember a bite, more symptoms, etc). Definitely keep us posted. Congrats! lol Best wishes.
Kate
a NDPH Group Leader
~I'm just another patient navigating the daily challenge of this chronic pain. Thankfully it has got easier over time,and it could always be worse.~

Previous discussions I participated in:
A helpful post-op tip
salsalate
New here

01/25/2012 01:36 AM  Top

Enbee
EnbeePosts: 1517
Senior Member

Great news Geologic! I'm so glad you have both a diagnosis and an excellent doctor Smile It sounds like you are on the right track. Keep us updated with how you are going.
NDPH Group leader

01/25/2012 08:31 AM  Top

MaryR
MaryR
 
Posts: 3868
Group Leader

I am glad to hear that you have a diagnosis and found a doctor and are getting treated too. I hope that your headache starts to improve before too long (though I know treating LYME is not an overnight sort of thing either). Please do keep us posted with how things go for you.
Mary
NDPH support group leader
Dementia support group leader
Not a medical professional...just another patient with my own set of experiences to share.

01/23/2013 08:21 PM  Top

Geologic
Posts: 13
New Member

Hey everyone. Just wanted to post another quick update:

I've been doing the lyme treatment for about a year now and maybe it's helped a little bit but it hasn't made the headache go away. My lyme doctor seems confident that I will see my symptoms disappear soon. I'm currently on Doryx, Tindamax, Malarone, and Rifampin to treat lyme and co-infections. My headache is low averaging around a 3 which is definitely better than when it started but it's hard to tell what's helped bring it down.

I saw Dr. Rozen recently and he suggested seeing a lyme-neurologist to follow up to see if I really have lyme disease or not. We're trying physical therapy for my neck which he said has cured people. He also mentioned that he has seen people react well to anti-viral drugs of some sort so that is also a possibility. We're also doing some more MRI-type scans to rule out other causes.

I'm sure there's a lot of great doctors out there but I feel like for NDPH, there's no one in the world that compares to Dr. Rozen. If you have a headache that fits the criteria for NDPH, I highly suggest you see Dr. Todd Rozen in PA. I wish I had just seen him initially but I'm happy now because I feel like I'm finally on the right path.


01/24/2013 07:21 PM  Top

tortoisegirl
tortoisegirlPosts: 2798
Group Leader

Thanks for the update. Glad you are doing a bit better, but I imagine its disappointing that this hasn't been a cure (or at least yet). I've only heard good things about Dr. Rozen. Its awesome you were even able to see him. Best wishes.
Kate
a NDPH Group Leader
~I'm just another patient navigating the daily challenge of this chronic pain. Thankfully it has got easier over time,and it could always be worse.~

Previous discussions I participated in:
A helpful post-op tip
salsalate
New here

01/27/2013 12:14 AM  Top

Enbee
EnbeePosts: 1517
Senior Member

Hi Geologic, thanks for coming back in to update. I'm sorry that after a year of lyme treatment you aren't pain free, it does sound like you are on the right track though! Getting your pain down to a 3 is fantastic. It seems as though once people have a sustained improvement in pain levels they tend to continue to improve over time, even if the progress is slow. This has pretty much been the case with me. I've been improving over the last 2 years and now have some time pain free. It was a very gradual improvement though. My neurologist seems to think it takes time for the nerves, nerve pathways and abberant pain signals to heal/improve.

I hope you manage to hang in there and keep seeing some improvement. I"m glad you are finding Dr Rozen so helpful, he seems very highly regarded!

NDPH Group leader
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