LymeNet Flash: Joint and Muscle Pain

This is topic Joint and Muscle Pain in forum Medical Questions at LymeNet Flash.

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Posted by kmr5861 (Member # 6924) on :

I was diagnosed with lyme in 9/04, -- Doxy for 5 weeks, then doctor ran 30 test, said the lyme was gone.

Got really confused and exhausted, went to infectious dr on rocphen iv for 4 weeks. 12/1- 12/31

Brain fog all gone, but have bad joint pain in my knees, neck, hip etc. Is this just normal recovery period, how long should this last? Should just push through it?

'm not getting much excercise, because I feel pretty worn out in the muscle and joints later.

Do all LLMD not except insurance?

Its hard to figure out if your getting better or just gliding through.

Posted by Carol in PA (Member # 5338) on :

kmr:
I'm too fatigued right now to make an extensive reply, but it sounds like you still have Lyme Disease.
Have you contacted either of the doctors who previously treated you regarding your continued problems?

When did your joint pain begin?
Do you have pain medication?
Were you tested for or treated for any of the co-infections?

What changes have you made to your diet?
Which supplements have you been taking?

Take care,
Carol

Posted by NP40 (Member # 6711) on :

KMR, I'd say you haven't been treated long enough, hence the continuing symptoms.

My son was diagnosed/ started treatment in 12/04 probably infected 8/04. He did 30 days of doxy, omnicef, zithro, all oral. Then he went on IV's of rocephin [10 weeks]. He's now doing IV's of zithromax, with mepron, artemisinin.
The doc will probably be replacing the mepron with plaquenil next week, because he had an awful rough time on mepron.

I bring all this up because you two were very close in your diagnosis date. Your treatment is intermittent at best, while his has been constant with slight improvement.

May want to find another doc ?

Take a hot bath with epsom salts, for your leg pain. Soak for a while and keep it hot, while drinking a quart of warm water. Some add regular salt, and aloe vera to the bath as well. Really seems to help alleviate the pain for a while.

Posted by kmr5861 (Member # 6924) on :

When did your joint pain begin? -- The same time the exhaustion and fatigue/brain fog in aroun 10/04 - its just has been progressing

Do you have pain medication?
Gave me celebrex that was it. I was told to see a ortohopedic. My GP thinks i'm cured?
My infectious dr told me to see the ortho?

Were you tested for or treated for any of the co-infections?
Good question, I know the GP tested me for other disease, hep c, etc
I'll call my infectious dr, and find out what if they tested me for any other infectious, they did test for all the rheumo

What changes have you made to your diet?
None - just grapping an eating while i go along

Which supplements have you been taking?
when i remember multi, vit E, Calcium

Should I find another Dr - I feel like i'm getting caught in that cycle of not getting the right help.

Posted by Aniek (Member # 5374) on :

Yes, it does sound like you are stuck in a cycle. This isn't uncommon with Lyme patients. Traditional medicine has said Lyme is cured after 2-6 weeks of antibiotics. Unfortunately, many doctors as a rule will not recognize any Lyme symptoms after a course of antibiotics.

It's like a Dr. saying a tumor doesn't exist because you've already had chemo.

I got an LLMD (lyme literate medical doctor) in Fairfax. An LLMD isn't an official specialty, like neurologist or rheumatologist. But it is a doctor who has experience succesfully treating Lyme, usually with longer term antibiotics, and with diagnosing and treating coinfections.

If you want, I can email you my Dr's contact info. She does take some insurance.

Posted by kmr5861 (Member # 6924) on :

Please ---email. Thank you

Posted by kmr5861 (Member # 6924) on :

my email address is [email protected]

how did you find the doctor?

Posted by Aniek (Member # 5374) on :

I'm sending you an email. I found her by contacting the local Lyme support group. Look under the support group link upper left. They meet once a month.

-Aniek

Posted by groovy2 (Member # 6304) on :

Lymes is a Long term thing-- as in years--
unless you get treatment within days of
being infected-- I have had Lymes for 19
years--17 of witch I had no idea what was
wrong with me. I was lucky enough to find out
about Gluecosmine sulfate about 12 years ago.
It Really Helpes with joint pain -muscle
pain and tendions-- I have spent many hard
earned dollars on it and it was worth every
penny. The price has Really dropped too.
Used to be about $75 a month-now its
about $10--- look up my other posts--
where I have gone into more detail
on Gluecosmine sulfate.--Jay--

Posted by Lymetoo (Member # 743) on :

JOint pain can be caused or made worse by systemic yeast. I don't see where you mentioned taking acidophilus.

You need to get some high quality acidophilus and go on a yeast-free sugar-free, low carb diet. Trust me on this one!

You also would do well to find an LLMD ASAP! Some insurance companies will reimburse you for out-of-plan drs. Mine does. They pay 80%.

I hope you can find one soon so you can get well.

Candida elimination: http://flash.lymenet.org/ubb/Forum1/HTML/021412.html
Lyme symptoms list compared with yeast symptoms http://flash.lymenet.org/ubb/Forum1/HTML/021202.html

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oops!
Lymetutu

Posted by kmr5861 (Member # 6924) on :

Thank you! I will definetely get the acidophilus and Gluecosmine sulfate.

I have read about systematic yeast before, I was not aware it could cause joint pain..

Posted by kmr5861 (Member # 6924) on :

i just read the link regarding the yeast.. I always thought it came with the vaginal.

I will be eliminating as much as possible starting asap. Anything that will help.

I do have to say, after being diag with Lyme you are really become in tune with your body and what its telling you

Posted by lemonylime (Member # 5615) on :

First, see an LLMD. It sounds like you still have some little buggers in you messing you up, and they need to go!
Once you are feeling better you may want to try exercise. I've been a runner for years, until joint pain, which I thought was from a running injury, was eventually led to my diagnosis with LD. I think I actually hurt more when I don't run than when I do. In any case, I think this signifies trouble, and you should see a doctor. The joint pain was my only symptom - I couldn't even straighten my legs when it was bad. I'm back to doing high miles like I used to, with a touch of joint pain, normally - but thankful that's all I'm dealing with. Just this past week, I've experienced a flare in symptoms, after 8 months of feeling pretty symptom-free. It's becoming clear to me that once diagnosed, we must always remain watchful, to say the least. I don't recommend exercise until you see a doctor, but once you go to an LLMD (don't bother with the others; a clear waste of time), and your symptoms improve, you may want to see if regular walking or running actually helps.

Posted by Bon (Member # 5999) on :

e-mail on its way to you !

Posted by cbb (Member # 788) on :

You've been given some good info, but I'd like to add -

Be sure to have 2 hours between the antibiotics (abx) & acidophilus - before and after.
If taken too close together, the abx will kill the acidophilus before it has a chance to help you.

The acidophilus kills good bacteria along with the bad bacteria, so the good has to be replenished.

Also, be sure you take enough each day.
In his "Diag Hints & Guidelines", Dr B recommends taking 6 capsules a day (2 capsules with each meal). http://www.ilads.org/burrascano_1102.html

Print a copy if you don't have one. It's about 32 pages of excellent info.
Read pages 24 & 29 where he mentions acidophilus.

I'm not a dr, but this is what worked for me:

May have to take it with snacks between meals if you're taking abx with meals.

I always took the acidophilus 2 hours after the abx in the evening so that it would have all night to help before I hit it again with more abx in the morning.

I've had a few people laugh at this, but it worked for me.

Keep in touch & let us know how you're doing.

Posted by kmr5861 (Member # 6924) on :

When I do try to take longer walks, like walk my daughter to school, (1mile rt) I'm pretty sore by the end of day, after working.

I have a call into a llmd, hopefully will get a call back.

You really do get in touch with your body with this disease, I didnt think I was out of the woods yet

Posted by Lymetoo (Member # 743) on :

BTW, a regular dr [affectionately known as a DUCK here] will not know anything about co-infections. Try this...ask your GP to test you for babesiosis. Watch the look on his face!

IF he's ever heard of it, he'll say it's VERY RARE and you couldn't possibly have it! HA!

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oops!
Lymetutu

Posted by minoucat (Member # 5175) on :

kmr, ditto to the above and just to add to what's already been said:

I experienced a significant reduction of pain after treating for babs (after years of just LD tx).

Then another big improvement in muscle and joint pain -- huge, major, completely unexpected change --after treating for bartonella.

Started being able to exercise again after the babs tx, and REALLY exercise after bart tx.