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Gabapentin
Hello, I am new to this group. I have had more than 85 blood tests since I was diagnosed with Lyme in July of 2014. All have been negative.  I have been on may drugs for pain and currently on Gabapentin for vocal cord/coughing issues and leg pain (knee, calf, left side back). I don't think it is helping much.  Is anyone else on Gabapentin?

Thanks,

Cat8
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Avatar universal
Welcome to MedHelp Lyme --

From what I just read, gabapentin is for pain, so it's not intended to treat the Lyme.  Is that also what you have heard from your doc?

How was your Lyme infection diagnosed -- with what tests?  Were there any co-infections also diagnosed (co-infections are separate infections often carried by the same 'Lyme' ticks)?

No one here is medically trained that I know of, but we're happy to share with you what we have learned in our own dance with Lyme.

We'll watch for more data from you --
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I had the Western blot three times in a month. 2 positive for Lyme and one negative. I was on Dox for 21 days. The Gabapentin was given to me by my ENT doctor to help with vocal cord and coughing issues (maybe due to Lymes). My Neurologist also wanted me on Gabapentin for leg pain and leg restlessness (Peripheral Neuropathy-maybe due to Lymes) at night. My dosage keeps getting higher. But I still feel about the same. Pain in the back of my calf muscles, back of knees, both sides of knee and left lower back pain.  Seems like the doctors are guessing. I have also be on Vicodin and Naproxen for pain.
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Ouch.  You've been through a lot already!  It's good that someone thought to test you for Lyme -- too often it's an afterthought or not even considered.  So this is a step ahead.

-- Were you tested for any infections other than Lyme that 'Lyme' ticks often carry as well?  There are a half dozen or so of them, and they need different tests entirely (and sometimes different meds than for Lyme).

-- About how long were you feeling lousy before you were diagnosed with Lyme?  That can determine what meds your doc gives.  Doxy is not always efffective, because a short while after infection, the Lyme bacteria migrate into cartilage and create 'biofilms' [slimy areas where they can hide in the body], and in those places, doxy can't break through to kill the bacteria.  A Lyme specialist knows this, and often gives two antibiotics:  one to break open the biofilm and the other to kill the Lyme bacteria.

-- Sounds like you got just doxy for 21 days, yes?  Any other antibiotics?

-- About the pain in your calf muscles etc:  Consider trying magnesium (Mg) supplements ... you might want to check with your doc first, in case you have other medical conditions that would make taking Mg not a good idea (tho I don't know what that could be).  Lyme bacteria use up Mg in the body, and muscle aches and cramps can be due to Mg deficiency.  I've read that Mg is often low in the American diet anyway.  Any variety that ends in "-ate" [magnesium malate, orotate, citrate, etc.] are said to be most absorbable in the body.  (One variety that I've read is *not* as effective is a combo pill of magnesium and calcium such as CalMag; dunno why.)  I still take Mg every day, with good effect.  Others have reported the same.  Get a good brand from a vitamin store or online etc.

And then I'd suggest you think about finding a Lyme specialist.  Docs who aren't truly knowledgeable in Lyme don't know what they don't know, and a doc who treats with only doxy and painkillers without figuring out how long the patient has been infected or what co-infections (other separate infections that the 'Lyme' ticks often carry) the patient may have is not, in my opinion, paying attention no matter how well-intentioned the doc is.  

To be fair, there is a huge split in the medical community, and your docs appear to be on the traditional side.  You don't need to tell your docs you are looking for a second opinion, just to avoid causing a problem with them, until you know which way you want to go.

You may see the term 'LLMD' (short for 'Lyme-literate MD'), which is patient slang for an MD who understands Lyme in a more advanced fashion.  No doc calls him/herself an LLMD, and they can be any variety of doc, from a general practitioner to an immunologist and in between.  It's a state of mind, not a certificate or degree.  Many LLMDs are members of a voluntary group called ILADS [EYE-lads], short for International Lyme and Associated Diseases Society.  

You'll see 'ILADS' in various places.  Just because a doc is an ILADS member does not mean s/he know what s/he is doing, but it's a good sign.  There's no test to join ILADS, so not all LLMDs see things the same way, and if something seems 'off', then reconsider.  

But the first thing to do is find a Lyme specialist.  How to do that?  I searched online for

            ---    lyme disease iowa    -----

and there are several patient-oriented groups who often have the best data on finding an LLMD.  If that doesn't work, you can also email to

            ---   contact  [at]   ILADS    [dot]    org ---

and tell them where you are located ('near DesMoines IA' or whatever) and about how far you can travel.  They can send you names of ILADS member docs.

And I also found in a google search a website for IowaLymeDisease [dot] com.  Try them too!  They often have good scoop on local Lyme docs.

It took me 20 docs to find out I had Lyme and a co-infection, babesiosis (similar to malaria).  I had been ill too long for the standard doxycycline to work --  and many of us don't know exactly when we got infected ... I never saw on me a tick or the circular red rash often mentioned.  After getting the correct diagnosis and different antibiotics for each infections, I have been well now for some 7 years.  I wish the same for you!

Let us know how you do, and also how we can help, okay?  We've all been where you are.  Now let's get you outta there.  
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May I ask how long you were treated with the antibiotics before being well for 7 years?  My 24 year old daughter sounds similar....
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1763947 tn?1334058919
I was on gabapentin when I  first got sick but went off shortly after. I had a lot of pain but didn't want to be on such strong meds.
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And Cats8, you don't need to tell your other docs you are going for a second opinion with a Lyme doc.  There is such ill-feeling by nonLLMDs against LLMDs that it could get in the way of your relationship with the other docs.  The ill-feeling is generated by nonLLMDs being afraid they could be accused of collaborating with quacks and could hurt their own reputation and any liability.  It is the same reaction you would expect if you told your docs you were going to boil small kittens to make broth to heal you in a ceremony deep in the woods on the night of a full moon.  NonLLMDs have been persuaded that patients like you just have to live with your situation, but they are soooo wrong.  I am living proof, and I am about as totally mainstream as you can imagine.  There are doubtless some lousy LLMDs out there, but it is not the ILADS/LLMD construct that is wrong:  it's the politics of those who think Lyme is like the sniffles.  

Sorry if I said this above already, but it bears stating again:  

If you are old enough to remember when AIDS first appeared, this is in many ways very similar to that situation.  The 'mainstream' docs were totally locked into their view of what AIDS must be, because the docs forgot or ignored the fact that Mother Nature doesn't work that way.  The white-coated doc from the CDC [Centers for Disease Control] got on live TV to intone that unless you were Haitian or gay, you could not get AIDS.  

Hello??  Mother Nature doesn't give a d*mn about where you're from or who you spend personal time with -- bacteria and viruses are equal opportunity misery-makers.  Eventually the docs figured out that AIDS could infect anyone, but for some reason (ego would be a good candidate), docs are doing the same dance with Lyme that they did with AIDS.  

Lyme is treatable, but first you need the right diagnosis and then appropriate treatment.  It's out there -- don't give up!  
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Hi, thanks for your reply. I feel so tired already and more tired on gabapentin. I am now at 1200mg daily. I might as well stay in bed. My ENT doctor keeps increasing the dosage to help "fix" my vocal cord and coughing problem. I am so discouraged today. throat feels like it has a lump in it. My ankles, calves and back hurts as well as pricking feeling in feet. I see my ENT tomorrow again and am going to ask for a referral if he can't figure this out.

Cats8
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Does your insurance require that you get a referral from your current doc?
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1415174 tn?1453246703
Cats8
FYI, I was on Gabapentin for back pain and it did nothing for the pain. I too was on 1200mg. Gabapentin is for nerve pain (and other things). You may want to try something else since this doesn't work. I did have to taper off of it because I got insomnia from going down on it. There are a lot of other things to try for pain.
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