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05/05/2012 06:12 AM

Thought I'd say g'day

5150fletch
Posts: 61
Member

I haven't been on the ndph forum for a while since I tested positive to Lyme, so I thought I pop in and see how everyone is doing?

Their was a headache protocol I tried years ago which include doxy and singular , I felt terrible after trying it for a month but now I know this must of been a die off reaction from the Lyme bacteria...

I wonder if the people that used that protocol successfully really had a bacterial infection...

My head pain has decreased significantly since treating for Lyme, from a 8-9 daily to a 4-6... However before popping the champagne and celebrating i have developed light sensitivity and a host of all Other weird symptoms....

My question to all others on here with ndph, have you tried combination abx and felt sick....

Maybe for some Lyme is the cause of your headaches..

All the best

Fletch

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05/05/2012 08:45 AM
Jess23
Jess23Posts: 78
Member

Hi Fletch. How long have you been recieving Lyme treatment for? I'm so glad you're doing better and to hear your pain level has reduced. Is your headache still constant?

I tried doxy a few months ago but had to stop taking it after a few weeks because I felt awful. I do think it's possible I could have Lyme, I moved to a farm in rural Scotland 18 months ago and my headache started not long after. I spend a lot of time outdoors and with animals but my doctor says he has never heard of a case of Lyme in my area so I don't know what to think. I want to look more into Lyme but I can't afford it if it turns out to be a dead end.

I recently resumed the course of doxy I was taking originally and again I am feeling not too good, but I have also just come off amitriptyline so that could be down to med withdrawal. I think the possibility of Lyme will always be in the back of my mind until I look into it properly.


05/05/2012 05:43 PM
MaryR
MaryR  
Posts: 4121
Group Leader

Hi Fletch, Glad to hear you are doing better. I know treating lyme takes a while too. I was curious to know if the feeling sick on the doxycycline was along the list of the side effects or if it was a more general sick feeling.

I tried doxycycline for a little while for a dermatological thing (whole other story...I seem to attract weird stuff) but wasn't able to stay on it because my side effects were so bad. I was on 200mgs a day which seems to be higher than some people here for headache, but yeah, it didn't agree with me at all, but it was straight down the side effects list. Just wondered if yours was like that or if the die off reaction is less linked to side effects?


05/06/2012 05:07 AM
5150fletch
Posts: 61
Member

I am currently on 400 mg of doxy per day plus two other abx, I felt like I was going to die about 2-3 week into it..

All my symptoms intensified including the headache but it gradually relaxed over the next 10 days..

The reason I never thought I had Lyme and followed the headache disorder diagnosis and treatment for so long was that 4-5 of the countries best neuro's all told me it was ndph and that having Lyme disease was impossible.

Jess in Australian the government states their is no Lyme disease and every doctor here say the same thing despite 1000's of reported cases, actually the media have been reporting hundred of confirmed case in people that have never left the country, so my advice is don't trust your doctor at best his or her opinion is only based on what they are taught... Which is not a lot...

The theory of ndph never sat well with me and never really made sense, something has to be the cause. Very much like a toothache in a lot of ways..

I'm not saying you have Lyme disease but I would bet my life on it that a fair percentage of the members on this board DO....

A former member on this board (ramilin) told me to check for Lyme four years ago and I got talked out of it by narrow minded doctors.. To this day i Wish I had of... Would have saved me a truck load of money, years taking anti depressants, anti convulsants, muscle relaxers, pain narcotics and doing useless therapies.

If you can't afford testing get your doctor to prescribe you high dose abx and if you get sick within the first 5 weeks( herx reaction) fair chance you have Lyme..

I still have a headache and I still feel like crap,

But looking back I am a lot better.....

I have read thousands of hour looking into ndph just like all of you on this forum and now Lyme disease, and there is a lot of correlation with regards to symptoms and sudden onset ...

Anyway just wanted say hi, not to preach..

The people on this forum were really kind to me when I first came down with this headache, so if I can help let me know"..

All the best

Fletch

Mary light sensitivities are a classic symptom of Lyme so it is definitely worth investigating for you...


05/06/2012 09:23 PM
MaryR
MaryR  
Posts: 4121
Group Leader

I know light sensitivity is a classic Lyme thing so it might point that way. It is a classic migraine thing too (and I did have auras in the beginning of my headache that the topamax largely controls) so it could go that way too. Hard to tell. In looking stuff up on the internet it sounds like the typical herx reaction is kind of "flu like", is that the way yours was?

I didn't do well on doxy, but it was mostly that I couldn't balance and nothing felt real. I had a few other side effects too, but the not being able to balance and feeling like you are in an alternate reality all the time just wasn't going to work for me. I didn't get a fever, or have a worse headache, or anything like that.

I don't know if the dose would have been high enough to get a herx reaction (it sure wasn't as high as yours), but it would have been nice to have a way to test without having to pay tons of money.


05/07/2012 06:07 AM
5150fletch
Posts: 61
Member

When I had a herx reaction for the first time I fell down 16 steps and dislocated my shoulder, I was so dis orientated, un balanced and thought I was going insane.. Your words described it perfectly " alternate reality" that exactly how I felt . I never had flu like symptoms at all....

I know it wasn't a reaction to the doxy as I am still taking it without any major affects now.

Without doubt the worst I have ever felt was when I was taking headache drugs, anti convulsants, muscle relaxers, anti depressants..

I thought I would Not be able to continue without my head exploding unless I tried to dumb the pain down with these meds, but in hindsight they keep you locked into a state of helplessness...

Something is causing all of our headache we just need to find what it is....

Best of luck for now , iii pop back in to see how your travelling

All the best


05/07/2012 08:44 AM
Jess23
Jess23Posts: 78
Member

Unlike Mary, my headache intensifies dramatically whilst on doxy, and I just feel generally very unwell; very achey and fatigued. I've also been suffering from heart palpitations this time taking the doxy. I have always assumed these things are side effects though, rather than a possible herx reaction.

Mary, have you discussed the possibility of Lyme with your doctor? I've brought it up with a couple and actually once got laughed at, which made me feel quite foolish. My GP thought it would be very unlikely, but prescribed me doxy anyway just in case. With additional and intensifying symptoms when taking the doxy, I don't whether to press this further or to just put it down to side effects.

I agree with you though, Fletch, that something is causing our headaches and we just need to figure out what that thing is. I don't believe we can just get a constant headache for no reason, there HAS to be a cause for it.


05/07/2012 04:09 PM
suki17
suki17  
Posts: 481
Member

I feel a bit the same way as Fletch. I stayed on doxy/singulair for @ 1 year and I felt alot better and my headache went down in intensity. Unfortunately I developed shocking menstrual related migraine, anywhere from 4-9 days each month, so was prescribed triptans that have made my head incredibly sensitive to triggers. My neuro who was treating at the time made me stop the doxy/sing as he said it wasn't "science based". Given the predicament that I am in now, I am seriously considering starting it again, as like Fletch said, all these headache preventatives cause so many side effects that are often nearly as bad as the headache itself.

05/08/2012 08:47 PM
tortoisegirl
tortoisegirlPosts: 3243
Group Leader

Thanks for the update! I have also got the it can't be Lyme reaction from one or two doctors. I was on Minocycline for two months if I remember right and I actually didn't get a reaction either way on it. Most doctors just won't prescribe an antibiotic on a "whim" that if could be Lyme. They may however prescribe a week of something to try to take the headache down a notch, but that wouldn't do anything for Lyme.

I would think if one doctor prescribed something and you knew it helped you, another doctor would typically do the same. Suki-I'm surprised a doctor would take anyone off something that would help (unless they were more sighting concerns of long term abx). So sorry you are still having such a tough time. I am too. Sad

From my research I've kinda figured that Lyme would be quite a long shot for me, but I do agree that for at least a significant percent of NDPH folks it is Lyme. We've had enough success stories here. Seems to take a lot of time and often several different abx treatments, infusions, supplements, etc, but Lyme is definitely a "better" diagnosis than NDPH as far as chance of recovery. Looking forward to more updates. Best wishes.

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