Have any of you found that this kind of pain is a herx, lyme arthritis, or toxins?

Do you take anything safely for the pain when on Doxy?

What kind of problems are caused by using steriod shots like cortizone in the joints to releave swelling?

Are these symptoms something that eventually will go away with treatment, or does it become permanent (Lord I hope not)?

Yes, most of us have experienced this kind of pain.

The answer would be D - Any of the above.

Steroid shots are a very bad idea! Steroids lower your immune systems ability to fight. Obviously, not something you want to do.

I'm sorry that I can't answer if it will go away or not . . . I'm still waiting for it to go away. . . but hopefully someone else will come along with more information.

I am on plaquenil and Biaxin and I think those are both helpful in decreasing joint pain according to my lLMD.

I am kinda scared because I will have to stop the palquenil when I change meds.....Anyway,
I can't predict for you but I have learned is that all these symptoms change....sometimes they get better sometimes they get worse....but they always change.

Ask your doc about the plaquenil it takes a long time to work so the sooner you get on it the better. Also, you need to have an eye exan every 6 moths to take it.

Other thing I think has helped with my joint pain is Vitalzym. It is an enzyme that has an effect on the blood. Here is a link to read about vitalzym: http://www.vitalzym.com/vitalzym.htm http://www.vitalzym.com/vitalzym.htm

Also, look at VitalzymX. You haveto find a practioner to get the "x" version.

I have been using the standard version and it works well.

It is expensive but I believe it works. It was recommended to me by my Naturopathic Dr.

You can by it at: http://www.iherb.com/vitalzym450.html

If you can order the vitalzyme and start with that.....I think it may actually be helping more than the plaquenil.

Hope this helps,
robi

Somethings for you talk to your doctor about:

I take Flexeril and it helps with a lot of my pain. It's a muscle relaxer and it helps with the muscles that are very tense, and joints where I have referred pain.

I just started Neurontin. Neurontin is supposed to help with nerve pain. My doctor prescribed it when I mentioned some of my muscle pain as "burning."

Anti-inflammatories have never worked for me. I've tried Vioxx, Advil, Aleve and other prescriptions and nothing.

Sorry you're having so much awful,pain.

The Doxy at high doses crosses the blood brain barrier, so your nerves will really be affected.

If you can take down the inflammation with something over the counter like Motrin or Advil that might help.

(Only if you can tolerate these kinds of antiinflammatories.)

Please, please always take this with food and careful not to exceed daily dosage on label.

Add that to prescription Elavil 10 mg. low dose to turn off the pain signals. (Get generic; cheap $10)

Your doctor will know the right dose for you.

It's an old anti-depressant, but it's used for pain now. It's very much overlooked as a pain medication, but the folks on this board sure know about it.

It will probably make you sleepy or it may not.

Elavil cannot be taken with Thyroid medication or if you have heart problems.

I have found the herb, Valerian capsules to help along with the Motrin. It really has a special way to affect the nerves & make them quieten down.

I have had 13 years of pain in jaw, face, head & neck now improved with antibiotics.

Also, if you can get a microwavable hot gel pack from the drug store that would help.

Wrap it in a bandana & place on jaw.

Mine is called Reusable/Multi-Purpose ICE/Heat Gel Pack by TruFit $9. It has a blue label & the gel pack is blue.

Also, you've probably read about liquid Magnesium Citrate $1.12 at Wal-Mart or any drug store, grocery store that will help quieten the nerve pain too.

It's found in the laxative section.

The antibiotics will cause a magnesium deficiency & so will the Lyme bacteria.

So actually you've got 2 strikes against you to begin with as far as magnesium levels go.

This liquid magnesium citrate is quickly absorbed, but just start with tiny, tiny amounts l/2 tsp. to 1 tsp. to bowel tolerance.

You don't want to get diarrhea by using too much. More is not better in this case.

You probably already know all this, but just to be sure, take the Magnesium 2 hours away from your antibiotic.

I hope others will come by & offer their tips.

Let us know how you're feeling. We sure want you to feel better fast.

I'm very sorry you can't make it to an LLMD, but we'll try & help you all we can.

Take care,
Jan

P.S. Forgot about the old standby, Extra Strength Ben-Gay Cream in a tube. I think the Equate brand at Wal-Mart works just as well as the brand name.

quote:

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Originally posted by GrandmaCLD:

What kind of problems are caused by using steriod shots like cortizone in the joints to releave swelling?

---

Also, prolotherapy is great for strenthening joints and thus relieving pain. I have had alot of prolo on my lower back, as well as most of my other joints. It helped alot. But first, you need to continue with the abx therapy.

Lyme treatment can take a long time, sad to say! Biaxin worked great for me too, btw.

Here are some links on prolo and on my LLMD. Many people across the country and especially the Midwest travel to see him. He uses heparin therapy, prolotherapy, and many other modalities to help us Lymies.
http://flash.lymenet.org/ubb/Forum3/HTML/004140.html http://www.drcharlescrist.com
http://www.prolodoc.com/faber4.htm http://www.prolodoc.com/zale.htm http://www.prolotherapy.com/ http://www.prolodoc.com/
Hear success stories: http://www.prolotherapy.com/proloaudio.htm

Rate prolotherapy: http://www.remedyfind.com/rm-715-Prolotherapy.asp

How do other treatments rate? http://www.remedyfind.com/hc-Osteoarthritis.asp

Articles on prolotherapy:
http://www.prolotherapy.com/documents.htm
http://www.prolotherapy.com/articles/banks.htm http://www.getprolo.com/

A great book on the topic:
Prolo Your Pain Away, by Dr. Ross Hauser

WELCOME TO LYMENET!

I am staying active - in spite of the pain. It is a bit hard though with a double neck fusion and a low back fusion.

I believe, and I am not a doctor, that you are describing is a herx reaction.

STERIODS ARE A SUPER BIG NO-NO!!!

You did not say, but, what is your Doxy doseage? Since you are not seeing an LLMD, you may not be taking enough and that will just be worse for you.

My LLMD describes a herx reaction as INTENSE Lyme symptoms that you have been experiencing and NEW intense LYme symptoms that you may never have experienced before.

KEEP reading...did you get the link for new members, yet?

Here it is, a storehouse of Lyme info that you will really want to read and bookmark so you can read through again and again.

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Please, whatever you do, DO NOT take steriods!!!

Rosemary

PS, BTW, my llmd also says that PAIN and FATIGUE are the Number ONE and Number TWO of the complaints of all his Lyme patients.

I'm sorry you're having so much pain. My pain has recently intensified and I believe it's as a result of a herx (although the herx has been going on for a few months and the pain just recently worsened).

As others have said, steroids are a big no-no as they suppress the immune system and can therefore open the door for the spiroketes to get into more places and dig more deeply into the tissues because they are free from attack by the immune system.

For my pain, I've been taking motrin if it's not too bad but I take 600mg because the normal dose of 400mg doesn't work for me. The 600mg doesn't always work for me either but it takes the edge off it a lot of the time if the pain isn't horrible. If it's really bad, I take Vicodin. I also use Vicodin for my headaches when they're bad.

And hot packs are great. When I get a headache I heat up all three of mine (the ones with the rice stuff inside and scents like lavendar and stuff) - a neck one, an eye one, and a large rectangular one - and I just basically wrap my head up in them. It helps a lot to make the pain bearable but I can't do much while I'm there wrapped up in hot packs!

I hope things get better for you soon. It sounds like a herx so hopefully it will lift before too long. But, you can probably expect to have a similar reaction every four weeks or so since that's the cycle of the bacteria and so there's a time every four weeks for about a week (different for different people) where more bacteria is being killed off.

Peace and healing,
Annie

------------------
``The best way out is always through.'' -Robert Frost

Stay away from Motrin/Ibuprofen if you can...last thing you need here is leaky gut problems! (AT least have a VERY full stomach when you take this.)

Magnesium, magnesium, magnesium.

Great advice...maybe this Dr can help you...La Crosse, Wisconsin.

Dr Patrick Scott (608)785-0038
he's not what I would call a traditional Lyme Doctor...but, he may help...nice staff, good guy.

I live in North East, Iowa.

I know the distance is a problem...but, DR C in Springfoeld, MO is the man I recommend.

You don't want to play around with this disease....get on board with the best approach...now.

300 to 600mg Doxy is the ILADS recommended dosage...per day.

Good Luck...e-mail me if you want.

Trout

it's only a 7 1/2 hour drive to seee Dr C
www.drcharlescrist.com

I have one available...he is 2 hours away...so I am having a hard time getting to him.
(Friends Doctor)

The MP is doing wonders for many.

Trout

As for the Doxy, my MD currently has me on 200 mg/day for another 3 weeks. Then he is moving me to Ceftin - 500 mg/day for a month.

He is trying to follow the CDC guidelines because they are investigating him for treating too many patients in our area for Lyme. WHAT A BUNCH OF IDIOTS!

As for the pain, it seems to be slowly increasing. I sit and rock my body just to deal with it, and I have always had a very high threshold for pain.

I have been printing and providing information from all of you to my doctor. I thank God that he is willing to research on his own time too.

Off the top of my head, I believe Minn. had 7-8 on their PRIVATE list..not posted on any web site. If interested, go to MP, and look on front page where you can post asking about drs. for your state or nearest to you...ok. They get back to you within the same day posted!

Yes, I too have pain where I never had it before too. Before my nextest meds, I'm still on: baclofen/muscle relaxer 3/day, synthroid/thyroid, ambien for sleeping, and depression/zoloft for my quick temper..great for chemical imbalance in brain!

Before going on biaxin, doxy, and now low dosage of benecar, things that helped my pain were:

hot water exercising in pool w/95 degress temps, spa, glucosamine/MSM/chondroitin sulfate really helped my pain, and my trusy 8 COLD 3M cold packs. I use 4 at a time.

I take one of those draw-string towels used to take a covered dish on the road.. I can fit 3 in there verical, pull string tight, and it will stay cold for 1 hr., and use the other around my neck/shoulder or on my painful right arm.

Is oil of oregano safe you ask? Well, is anything safe that we're taking to kill the bacteria in us. I think oil of oregano is probably safer than doxy. You can buy oil of oregano at GNC and vitamin shoppe stores. Oregano helps me herx. It works very well at reducing my arthritis. The effects of the oil only last a couple of hours though, unlike antibiotics that seem to last a lot longer. I know someone who's Lyme doctor tells her to us it. If you decide to use it, start off by only taking a few drops at a time. If the oil causes you have a rash, you might consider stop using it. I haven't had any problems with it, though. I think that some rashes could be good, though, it it's because you just killed some bacteria. Oregano removes iron from your blood. Bacteria and viruses need iron to grow. I think that removing iron from the blood probably, at least for a short while, decrease the red blood cell count (since iron is needed for red blood cells to carry oxygen throughout your body)

I was on useually 3 abx's at any given time and as I progressed down to 2 then one too ween off.
I have no joint pain now but I do get sore from being so far out of shape from the lyme. Hang in there.

quote:

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Originally posted by GrandmaCLD:
Have any of you found that this kind of pain is a herx, lyme arthritis, or toxins?

---

quote:

---

Originally posted by GrandmaCLD:
Do you take anything safely for the pain when on Doxy?

---

Hydrocodone for me works very well. I take a double dose as soon as I awake and then, I take Napronex Sodium (Aleve) throughout the rest of the day.
I've, also, found that while I have been ramping up my dose of Seroquel to much higher doses for depression has worked well for my pain.

quote:

---

Originally posted by GrandmaCLD:
What kind of problems are caused by using steriod shots like cortizone in the joints to releave swelling?

---

Seems as if the consensus on steroids are Steriods are to be AVOIDED.[b] Taking them will suppress the immunesystem and that is the LAST thing that we want to do while treating Lyme.

quote:

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Originally posted by GrandmaCLD:
[B] Are these symptoms something that eventually will go away with treatment, or does it become permanent (Lord I hope not)?

---

If you treat this with enough abx for a long enough duration, then, most of those symptoms that you mentioned will lessen or altogether ease up.

quote:

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Originally posted by GrandmaCLD:
I've checked on an LLMD in my area of MN, and I don't have the ability to travel 300+ miles for appointments. Sure would appreciate some insight on this.

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If you can just make one appointment with Dr. C of MO, www.drcharlescrist , then you will find that you probably will not have to return back to him for another 4-6 months.

Example: My daughter, Amanda, aka, lookin4answers and her two daughters saw Dr. C for the first time on August 30th and they weren't required to return until January. And, Dr. C will schedule phone appointments if you need in-between.

Dr. C is one of the best loved and respected LLMDs in the country...many of his patients post here.

In the long-run, you could and probably will wind up spending more on Drs visits than if you would just go on and make that initial appointment with Dr. C.

I spent a whole lot more on my local doctor, my PCP, than I saw before seeing Dr. C, 9 months later after being dxed with LD.

So, trust me, when I say that seeing Dr. C can be much cheaper in the long-run...he really knows his stuff. And, he, too, understands that most of his patients have to travel great distances to see him.

He says that the Number 1 and tied with that number, also, is Pain and Fatigue being the most complained about symptoms of LD that he gets from his patients.

I hope that helps you in your decision...one of the most important you can make in your entire life.

Rosemary