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10/28/2011 01:16 PM

Antibiotics?

Jess23
Jess23Posts: 78
Member

I know this has probably been raised, but I was wondering if anyone here has, or has heard of someone who has, been helped by antibiotics? Does anyone know what the connection might be?
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10/28/2011 01:36 PM
suki17
suki17  
Posts: 488
Member

Doxycycline and minocycline are the two antibiotics that have been used successfully for NDPH. Dr Todd Rozen did a small study with patients taking doxy and singulair (asthma med) for 3 months and had some good results. The anti-infammatory benefit of the two meds seems to reduce the pain levels of some patients or alleviate it altogether in a lucky few. It appears to be more successful if prescribed early on in the headache. Both meds are usually very well tolerated with few side effects, unlike most preventatives.

I have been using the doxy/singulair protocol myself for over a year and it has reduced my daily pain levels, however I still need to take my preventatives as the medications have not stopped the headache completely. Definitely worth a try if you have had your headache less than a year.


10/28/2011 03:28 PM
MaryR
MaryR  
Posts: 4181
Group Leader

Suki has the ones that have been used successfully for NDPH, but there are also people who were diagnosed with NDPH who later found out that they actually had LYME disease and they went on long term antibiotic therapy (a variety of antibiotics have been mentioned, often in relatively large doses, the LYME board knows more). Some of those people have eventually become headache free and you may have seen their posts or heard of them, but the connection in their case is LYME infection.

There may be even more people who have been helped by antibiotics who didn't have LYME or the usual doxycycline or minocycline prescribed. In those cases I have no idea why the med helped but sometimes strange things do.


10/28/2011 08:18 PM
tortoisegirl
tortoisegirlPosts: 3363
Group Leader

I have heard why antibiotics may help is some anti-inflammatory affect of them. I think stuff like antibiotics, steroids, and DHE are worth a shot to try and break the cycle. Apparently in the beginning (first year) they have a better chance of working too. Best wishes.

10/29/2011 11:37 AM
Jess23
Jess23Posts: 78
Member

I thought the connection might be with Lyme, MaryR. Suki, I've looked into that study you mentioned, and I'm going to bring it up with my doctor. Thanks for that Smile

Tortoisegirl, have you ever been tested for Lyme? I wonder because of you having fibro as well as NDPH.

Hope you all aren't in too much pain today.


10/29/2011 12:12 PM
tortoisegirl
tortoisegirlPosts: 3363
Group Leader

Nope. Its not something I'm pursuing at this time as my symptoms, onset, region, etc, don't seem to fit, and due to cost (insurance doesn't cover it). It is however something I've looking into quite a bit. Best wishes.

10/30/2011 07:39 AM
sodope
sodopePosts: 30
Member

Ive been taking Minocylcine for about 3-4 months and have noticed my pain level is down quiet a bit to where Im able to function. Been tested for lyme and results were negative. The pulsating headache is defiantly still there though. I havent been "cured" yet like you would find in these studies saying.

11/08/2011 10:42 AM
Ramilin
Ramilin  
Posts: 442
Member

My headpain COMPLETELY resolved with IV antibotics. I am have daily headpain free 2009. I did antibotics from 2009 - 2010.

Typically, oral abx's aren't as effective at cross the BBB (blood brain barrier), so IV is the best (if you can get it), if not, then there are orals that are typically recommended that cross in small amounts.

Typically, the connection is Lyme Disease and/or Tick Borne Illness (bartonella and babesia being #1 culprits).

Pm me for more info.

sodope..did you test for lyme and co-infections? what lab did you use? Most headaches are co-infection related, not lyme itself. Have your doctor draw a CD57 from Labcorp only...read up on that test if you don't want to spend more on lyme testing.


11/14/2011 06:05 AM
Jess23
Jess23Posts: 78
Member

I have been tested for Lyme, which came back negative. My NHS doctor agreed the test is not reliable and said he thought it was possible I could still be infected with Lyme, despite the test. He has prescribed me 500mg of Doxy a day for 3-4 months, and has suggested after this time we reassess the situation, see if the doxy has helped, and continue or discontinue with the treatment from there, depending on the outcome. I know I would be better off contacting a LLMD, but I simply cannot afford it.

The problem I'm having, is that 500mg a day seems quite a lot(especially for a long period of time) - it's more than what is recommended on the NHS treatment guideline page for Lyme. I'm worried this could do me more harm than good, as it's probable I am not infected with Lyme. Also, when Doxy has been successful with NDPH sufferers that are not suspected to be Lyme related, the dose has been lower. I'm concerned I could be harming my chances of a doxy induced recovered by starting at such a high dose. Any words of advice?


11/14/2011 09:43 AM
MaryR
MaryR  
Posts: 4181
Group Leader

I don't think starting at a higher dose would hurt your chances of a recovery unless you were unable to tolerate the med side effects (and I don't think Doxy has a reputation for bad side effects, but I haven't taken it myself). Whatever properties (anti inflammatory or whatever) it has at a lower dose that helped some people recover, it would still have at the higher dose, probably even stronger so it might make you more likely to see results instead of less (though you do have to be able to tolerate it...that is always the trade off when starting any med higher than usual).

About the Lyme treatment part, if NHS is anything like things are here in the US, there is controversy about Lyme. There is generally agreement on how to treat a simple case of "I got bit by a tick yesterday and there is this funny rash", which is probably what the guidelines on the NHS refer to, unless they are specifically for "chronic Lyme". Here people argue about whether it even exists and if it does how to best treat it.

On the one side the National institutes of Health (here and probably your NHS there) tends to just ignore the possibility of chronic lyme and publishes things about not overusing antibiotics (I think, I haven't actually read their stuff...I am just not that dedicated). I get the not overusing antibiotics thing since bacteria do develop resistant strains, and the more a particular antibiotic is used the more strains there will be that are immune to it. If the really heavy duty antibiotics are used a lot for Lyme (or anything else), we could have a real problem with bacteria that don't respond to anything we currently have (not that scientists aren't always working on it, but the bacteria are always faster than the scientists). Having had the experience in college of having a bacterial sinus infection that was apparently immune to the school nurse's favorite antibiotic (I went through two full rounds of it with no results before she tried something else that finally helped) it is a really bad feeling, and of course mine was not something life threatening, just grade threatening.

LLMD's on the other hand, do believe firmly in chronic lyme and see that their patients can be helped by the stronger meds. They are not willing to let nebulous future potential problems keep current real people from getting relief so they prescribe the antibiotics anyway (but it isn't medically acceptable which is part of why they don't take insurance...they don't want to show up on anyone's radar). I can certainly see this side of things too since who wouldn't want to be headache free?!

It sounds like your doctor is taking a middle of the road approach. He thinks that chronic Lyme is real and it is possible that you have it, but he is not prescribing a super-strong antibiotic, he is giving you one that is already widely used for non-life threatening things (it is taken for months at a time for acne), but at a large enough dose that he is hoping that you will be able to see some difference if it is Lyme. Given his situation (between a rock and a hard place pretty much) it seems like a logical thing to do.

So with all that rambling...it makes sense to me and I hope it works.

Post edited by: MaryR, at: 11/14/2011 09:44 AM

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