Lyme Disease Support Group

If it is a herx- you might want to talk to her LLMD and see about reducing the dosage or pulsing it until she gets through the worst of it.

I know when my daughter had Lyme- she would complain that it hurt to put her head on her pillow...but thankfully this did go away with treatment.

This collection of illnesses is truly the worst to go through...

We'll keep you both in our prayers.

Jackie

I myself has had only a "little" pain and if I took any pain meds..they just did not do anything...

But my gosh, not worse like your wife.. umm..this has me ask a question..

I know of some who have used a combo of supplements..

Like coq10 and mag...and it has helped their migranes.

Omega..did that help with swelling?

This pain subject comes up often enough, perhaps you could type "pain" in the "search" and come up with some posts...

see if you can find some of "cmany's" posts...???

Again, sorry, I hope you can find some releif for your wife..and more importantly she finds some releif.

regards, wlkthlne

Also, If I am remembering correctly, I may have told you this already in a PM - if she is cutting the gluten OUT - this can also happen - as some are addicted to the stuff and can go through withdrawl.

is it still a good idea to stay away from gluten because of this increase pain you mention?

BtW, i am sorry your wife, 18YearQuest, is in so much pain. That is the worst!

My dr won't put me on more than 2 abx at a time, and now he is treating my hhv6 with valcyte so only one abx right now.

There are supplements for pain too. Omega is one, i think magnesium helps too.

Hope this helps!

jan

So I am Gluten free and yeast free...I am and have been on the most boring and bland diet ever....

You can thank Dr. Barrssoro for that...Now..I don't miss a darn thing..

Don't and not looking back..soda's gone..icecream..gone..pizza gone..everything..gone!

Complete 360 life change!

best to you and all...

wlkthlne

Migraines used to be a daily occurrence until she got on a gluten-free, egg free, soy free, yeast free, corn free, milk free diet. I think I'm missing a few avoided foods.

Her doc diagnosed her with gluten sensitivity and other food sensitivities 5 years ago, and some things improved with the limited diet.

She's on a bunch of supplements for various vitamin deficiencies, but not Coq10 or Omega.

I think the increased pain is Herx. 2 weeks ago her doc prescribed Doxycycline for days when she doesn't get infusions of abx.

When she took them over the weekend all of her CNS symptoms went berserk. No more Doxy for now. I think the strategy of reducing abx is probably right.

Overall, I was wondering if other Lyme patients had excessive pain; especially pain that didn't respond to normal pain management. I know you guys are suffering, but I haven't read anyone describe the searing pain that my wife experiences.

Of course, Lyme is really best thought of as a set of infections, it seems. Who knows what one particular mix is capable of.

Thanks for all of the encouragement.

Marshall

I, too, have had the same kind of pain, I couldn't even stand clothes touching my body because it hurt too much. It was intense burning, pinching, stabbing, etc etc etc pain...but I did find something that took the edge off.

My LLMD started me on Lyrica and Lamictal (you have to ramp up the dose on the lamictal slowly). Both of these are anti-seizure drugs that work by blocking neurological pain (pain caused by nerves and nerve conductivity)...

It didn't eliminate the pain, but it helped GREATLY!!! My LLMD has told me time and time again that pain is not good for the immune system, and she can't heal while she is in such agony, not to mention that being in so much pain is conducive to negativity, which is NO GOOD for the healing body!

Good luck, and I hope your wife can find some relief. I, too, take a buttload of abx (4 at a time) and it can be managed.

Stay strong, and know that this, too, will pass!

Thanks for the reply, and sorry about your own pain issues.

Lyrica seemed helpful at first, but it turned into a nightmare. My wife gained 50 pounds in 3 months from Lyrica; 30 in the first month.

Also, it caused her intestinal motility to stop. Within 3 weeks her abdomen had ballooned to the point where she looked like she was 9 months pregnant. It was crazy. The ER thought she had a tumor.

This was a few years ago when Lyrica first came to market, and when we called the drug company about it, they said it couldn't be related to the drug. Several months later we called again, and this time, the drug maker acknowledged that they had had some similar complaints.

Believe me, I think we've tried everything (conventional) for pain. Pain is probably the most difficult part of the disease, although everything about it sucks.

Thanks,

Marshall

I use Magnesium for pain.. I also use the Ledum Palsture 6 cc homeopathic treatment from the health food store. this helps with some lyme pain apparently is one of the treatments use for accute lyme disease.

If I have a near migraine I use Excedrin Migraine occasionally (but this med was not prescribed by an LLMD).

Far infrared sauna work really well for pain.. and will cause a herx too.

I also found some homeopathic Fibro pills at the drug store haven't used them that much though..

I use C0 Q10 I think it is also good for head pain..

I heard that the vitamin c protocol is good for paina and energy.. Who knows maybe she would be in less pain on a more natural protocol like the herbals or homeopathics.

I have to agree with you pain is not easy to deal with and she might be what I call "Over herxing" I wander if the treatment is just too intense for her.