Does it work?

What else works?

I've been known to tie a bag of frozen peas onto the top of my head...

This pain has been constant for me for about 25 months now - with no let up.

There's got to be something that will help that won't increase my fatigue and brain fog.

I also use Oxycontin, with Vicodin for breakthrough pain. Don't know if you have used opiods. Apparently different opiods will cause more or less side affects for individuals.

So if opiods is what you were referring to as causing brain fog, you may need to try a different kind.

Magnesium is also helpful for me, though I usually need to take it IM or IV.

Hope you'll get additional input.

This post is to address the POSSIBLE root cause of your continuing pain-----my amateur guess only. I'll post about pain suggestions in next post below.

I can certainly empathize with your head pain as I had 13 years of facial pain, ear pain and finally back of the head pain.

If you have been treated extensively for Lyme, maybe you should consider asking about treatment for Babesia and Bartonella.

No one recovers without treating the tick- borne coinfections. In fact, you cannot get rid of LD successfully until ALL the co-infections are treated.

The co-infections Babesia and Bartonella take different medications to eradicate.

It's strictly up to the LLMD, but you'd probably treat one completely------before attempting to treat the 2nd one. Don't really know about that.

Babesia and Bartonella both cause severe neuro or psych problems. To me, that definitely includes head pain.

Babesia is a parasite in the red blood cells and has a life cycle of 4 months. So you would at least need treatment for 4 months, but maybe longer. It all depends on the patient.

As for Babesia:

I don't know if you have a silent Babesia infection or you have definite overt symptoms, but many LLMDs will treat without a positive test.

Here's what I try to tell people when they're wondering about Babesia:

The following text is taken from Lyme Borrelia Out-Reach Founcation, Inc.:

"Dr. B. talked quite a bit about piroplasms. There are 13, and the only one that has a name is babesiosis.

Interestingly, at least 90% of his chronic Lyme patients have tested positive for babesiosis.

In fact, he said they are now questioning anyone who does NOT test positive, still being suspicous that they may have it!!!

It commonly causes brain dysfunction and headaches, so he said to watch out for the arthritic symptoms clearing (lyme), but the other symptoms persisting. Suspect babesia!

Three things he pointed out about babesiosis.

1. much more common than originally thought

2. high fever is rare

3. becomes chronic when lyme is chronic

An interesting thing is that babesia hangs out in spinal fluid, which is odd considering that they are blood parasites!"

Found at: http://www.angelfire.com/ny/lymedisease/fdn.html

Just FYI:
One person on the board said it took 8 rounds of Mepron/Zith to get rid of the depression.

And be sure & add the herb ArtemisININ to your Mepron/Zith meds.

As for Bartonella:

Try to get a trial treatment for Bartonella for a month. There are many drug combinations to treat Bartonella.

Levaquin (quinolone type of med) & Zithromas are only one combination. (Not advocating this, just giving you an example)

Sorry, don't know the life cyle of Bartonella.

Tincup has a list of Bartonella symptoms on Lymenet listed under BARTONELLA ALERT. Just tell me if you'd like the link. I'll be hapy to get it for you.

Check for Erlichiosis

Check for Mycoplasmas

You need to be checked for those. Mycoplasma Fermantans can cause major problems and can be treated.

Restart Lyme Treatment

After you've gotten all those things treated, then you can treat the remaining Lyme. Then you will have a more complete recovery of the Lyme infection.

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These are only amateur suggestions below. As long as you've had such persistent pain, I'd say you definitely need an LLMD for treatment------just my opinion.

1. You can order the herb ArtemisININ from the health food store & if you herx on that-----if might indicate Babesia??? (ArtemisIA is not as strong.)

2. At a different time, you might try TOA-Free Cat's Claw; or, Samento; or, Saventaro to see if you herx on that. This acts a little like a quinolone drug AND it just so happens that Quinolone RX meds like Levaquin in combination with Zithromax, treat Bartonella.

Just some anateur sleuthing here.

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Remember those who are the sickest, or have persistent symptoms, or more severe symptoms than most, are more likely to have UNTREATED tick-borne infections.

Here is a simple, yet profound quote from Lymenet:

"If the specific disease has not been targeted yet, then it will continue to cause problems."

Am I right about this post? That is the million dollar question.

There is no way of knowing until you've tried treatment for co-infections.

Best Wishes,
Jan

I read one of your post which listed 21 medications and/or treatments for head pain.

I'm so sorry you've lived in pure agony. No one should live in that type of pain. Chronic pain changes you. It does something to you. You can't get out of your body.

I hope anyone on Lymenet in that kind of pain keeps asking for help until they get it.

Nerve pain is horrible. Sometimes LD caues autonomic nervous system dysfunction which once the pain signal is turned on-----it won't turn off.

Sometimes you have to treat the inflammation with Motrin and then turn off the pain signals with something like Elavil. You can take 25 mg of Elavil up to three times daily.

I realize Elavil can make you sleepy. You might want to start with l0 mg of Elavil & ONLY 2 Motrin three times daily, if it's an over-the-counter Motrin.

Elavil does work to turn off the pain signals. It is not fast-acting like a narcotic. For me, elavil doesn't really work without the Motrin.

Plus, with elavil, you have to keep treating until the pain is completely gone; or, it will come back on you real fast.

You can also use Klonopin (anti-convulsant) to treat nerve pain. It's addictive.

Some use Neurontin (anti-convulsant), but not everyone has success with it.

As you're well aware, what works for one, does not work for all.

Maybe a pain doctor can get you on a medication to take daily. Then if you have break-through pain, you can use something stronger. You know, keep something on hand for that unexpected breakthrough pain.

I've never been successful at getting strong pain meds. Some LLMDs will prescribe Duragesic patches-----don't know enough about them to help you.

I'm hoping you can see a pain doctor.

You need a really good one. You need an MD or DO who can prescribe some pain meds for you. Preferably one who understand Lyme.

My pain doctor told me nerve blocks eventually destroy the nerve. But naturally, it's totally your decision.

There are some good alternative pain physicians who are MD or DO.

I do not believe in masking pain if it prevents you from getting to the root cause of the pain. But you definitely need a pain doctor.

And especially if you do treatments for Babesia and/or Bartonella, you're gonna need something for pain.

Sorry I don't have better answers for you.

When I take Elavil & Motrin and still can't get out of pain, I'll add in some herbal Valerian and liquid Magnesium Citrate (in laxative section) for $1.12 at Wal-Mart.

We have 5 bottles in my refrigerator right now. Just take a small amount every few hours. Keep your magnesium levels up.

I also use Magnesium Citrate capsules by Nutricology. Don't forget plain calcium with nothing added-----to be taken away from the magnesium.

You have to be diligent about the Mag & Calcium; both "calming things" to keep pain levels a smidgen lower.

B vitamins are suppose to be good for nerves. Think about fish oil soft capsules for the brain function.

Herbal St. John's Wort are to repair nerves------not just for depression. Research all side effects; don't mix with another RX antidepressants.

One product I found which is good for facial pain is;

Aspir-Source herb (Comfort Formula) made by Crystal Star Herbal Nutrition. It does not contain aspirin. It contains 10 different herbs which definitely help with head pain.

Directions say: Take 2 to 4 capsules hourly as needed. I hope you'll try this.

Another thing that will definitely help indirectly is taking this:

NAC (N-acetyl-cysteine) capsules made by NOW. NAC is an amino acid to build the body up. It's like the sulphur in garlic. (it's not related to sulfa drugs which are totally different)

You can take one NAC twice daily according to directions. It's not a painkiller-----but it rebuilds the body where Lyme has weakened it. The NAC converts to glutathione in the body which strengthens the immune system. NAC is calming to my brain.

It also pulls heavy metals out of the system.

Also, Theanine, an amino acid which comes from Green Tea, has a calming effect. Probably not a pain killer like you need, but it might help to calm the nerves in the brain a bit.....just a thought; never tried it yet.

The best advice I can give is to see a pain doctor; it may take a couple of tries until you find the right one.

If you tell your LLMD that you've tried 21 different pain meds & treatments, do you think that he might start to listen to you?

If you have a calendar, write down pain times on the calendar & rate the pain. Show it to your doctor.

Or, if you have the energy, type up how this pain makes you live. Paint a picture in his head.

Bottom line. Don't live with this pain anymore. Keep telling doctors until they help you.

Just wish I had better answers for you.

Best Wishes,
Jan

How are you doing?

I thought of one more med for nerve pain.

It's called "Lyrica".

It's supposed to do what RX Neurontin does, but only better & with fewer side effects.

Here's a link about it:
http://flash.lymenet.org/ubb/Forum1/HTML/030571.html

Also, I thought about RX Tramadol which is supposed to be non-addictive??? Don't know for sure though.

So after Head & Facial Pain for 13 years....is your gone?

You are right, I haven't treated for babesia or bartonella yet...although I have the Zithro...just no Mepron yet.

Also, believe it not I took Elavil for 14 months and even though I was still in severe head & face pain 24/7, I actually thought it was helping....then one day I ran out and couldn't get more at the Pharmacy due to a holiday, so I had to go without for 3 days....and you know what....I didn't feel ANY different....so I learned it wasn't helping at all and stopped taking it. sigh....

......it's sad but I'm to the point now of wanting to try opiods or get an occipital block, I've got to keep trying for some relief, my family needs me......and after 2 years, I'm really convinced that my pain is going to be forever......

Hope you're having a good day and you know you're not alone in this horrible hold pain has on you right now.

Wish I had the perfect answer to make this pain go away. I don't know what the answers for you will be, but I do know the crying kind of pain. And I do know the humiliation when doctors don't listen.

I was given Percoset when I had an infected root canal tooth removed. I loved the stuff. But it only worked for a few hours & when it wore off, the pain was back as if I'd never taken anything at all.

After 13 years of pain, I no longer live in daily pain. That's a huge miracle for me AND my family.

I hope that encourages you.

After almost 2 years of ABX, I'm getting die-off & chills from just Minocycline. Mino is tough to take & you have to ramp up slowly. It's many times stronger than Doxycycline.
It goes to the brain.

Next month, my LLMD/FNP (member of ILADS) in Austin will decide whether or not to add on Levaquin for possible Bartonella.

I'm really glad I've had an opportunity to get adjusted to Minocycline before trying to add Levaquin to the mix.

Anyway, something is holding me back from being functional, but I will keep trying until I have all the answers. I'd be pretty happy just to go to work "part-time."

Sorry Elavil didn't help you, but I'm sure there's something out there that will.

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Here's a link about needing pain meds which is quite good by Riversinger to let you know many on this board understand PAIN & the need for treatment: (scroll down to her reply)

http://flash.lymenet.org/ubb/Forum1/HTML/029895.html

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You do what you need to do to get out of pain. Wish that either your Primary Care Doc or Lyme Doc could try you on something like Neurontin. (It may or may not work for you.)

From what I've seen, I think many pain doctors reach for Neurontin first. Others who are more up-to-date on pain meds might can help you better on that point.

I have taken Inderal for Essential tremor of head & voice. It will help pain, although it's not a pain reliever per-se. I took 80 mg of Long Acting Inderal twice daily in the early 90s.

My former, now retired, LLMD gave me a low dose for fast heartbeat.

With Inderal, it helps the pain, but when it wears off, & if I hadn't taken some Motrin along with it, the pain would return with a vengence. It was just hiding under the Inderal-----if that makes sense.

Still, Inderal's not too shabby for headache pain depending on how severe the pain is and what TYPE of pain you have.

I can't take Inderal now because it would void out my RX Armour Thyroid; it's contraindicated with thyroid.

There is an Infectious Disease doctor in Houston. If you called to make an appointment, I'd just mention Babesia. I would not mention Lyme---at all.

Just an FYI:
I tried to get in after my former LLMD retired and they refused to make an appointment for Lyme.

If you decide to see my LLMD, just let
me know.

Let me know if I can help.

Here's my story about my face/ear pain. I didn't have the back of the head pain (located right above where the neck is connected to the head) until about 2000 or so. I call it my meningitis headache???

Back then, when I started waking up every morning with the back of my head hurting and feeling like I had "Lyme flue"------I was getting pretty desperate for a diagnosis & treatment.

This will put you to sleep for sure. (you'll have to scroll down to my reply)
http://flash.lymenet.org/ubb/Forum1/HTML/02705.html

Your best days are ahead of you!

Take Care,
Jan

quote:

---

Originally posted by TheCrimeOfLyme:

Treating for babesia and/or bartonella could make a world of difference for you.

---

I am currently treating for babesia, and it has increased my head pain quite a bit. I'm still early in the treatment, so the doctor and I are both presuming it is die off reaction.

But some may need to have effective pain control in place when beginning treatment, just to survive the treatment.

Definitely best to get at the cause, but sometimes you have to have help with the sypmtoms along the way.

HeadPain, Oxycontin is an opiod pain reliever. It doesn't work for everyone, but it has made things tolerable for me. Mine is nerve type pain, with inflammation. I can't take antiinflammatories at all. S

ometimes I use a muscle relaxer when swelling is too bad. It helps relieve muscle tightness that prevents lymph drainage.

I hope you find something that helps, soon. I know how bad the pain can be. It is the only thing in 50 years that made me consider suicide. Fortunately, it is now manageable.

With a RX, I get 5 little vials of B12 from Costco for $15.99 and the box of 100 insulin syringes for $21.

Anyway, I wish anyone who has pain, could do these at a minimum of at least once weekly.

My nerves were pretty much, crispy-fried!
Here's the article that convinced me to ask for them.

http://www.mts.net/~baumel/B12.html