AM I the only one with muscle pain?

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sickof lyme
Regular Member

Date Joined Aug 2008
Total Posts : 110
   Posted 4/23/2009 10:46 AM (GMT -6)   
I have tested pos for lyme and see a LLMd, BUt sometimes i wonder if my syptoms are lyme,becuase my pain is severe muscle pain and it feels like bruises all over my muscles and they burn when i try to do the smallest thing like walk up steps! I do not have joint pain at all its all muscles,sometimes i wonder if it is something else because i read all these post about joint pain??? i do get worse on my antibiotics like weak and shaky and the pain gets worse but even on my breaks the pain does not leave! Is there any people out there like me or maybe Im dealing with something different and my llmd just hasnt caught it?? any input ???

Regular Member

Date Joined Jul 2007
Total Posts : 170
   Posted 4/23/2009 11:00 AM (GMT -6)   
It sounds like Bartonella. I had the burning muscle pain mostly in my legs, but with the proper Bart treatment it has gone away. Bartonella is another difficult one to test for. My tests were negative most of the time, but I had all of the symptoms. Check for stretch marks or discolored bumps on the skin. There are a lot of other symptoms to look for too. Even though the pain is mostly gone right now I still have the skin issues. I'm being treated with Rifampin for it along with a host of other meds for the Lyme.

Veteran Member

Date Joined Aug 2007
Total Posts : 887
   Posted 4/23/2009 12:31 PM (GMT -6)   
I had muscle pain and weakness along with the joint pain.  I couldn't even walk up a flight of stairs without my muscles feeling like I ran a race.
2001 symptoms started:
Tingling in fingers and toes both sides, not tested at that time for LD
2007 Summer tested pos. WB, diagnosed with LD, tested neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Currently on Dr. Zhang's protocol 

sickof lyme
Regular Member

Date Joined Aug 2008
Total Posts : 110
   Posted 4/23/2009 2:44 PM (GMT -6)   
thats the problem I feel like since I dont have joint pain then it may not be Lyme causing it! I also do not have cognitive issues.THank GOd becuase the pain is bad enough in itself!

New Member

Date Joined Mar 2009
Total Posts : 10
   Posted 4/23/2009 3:02 PM (GMT -6)   
Are you vitamin d deficient? I am and have been taking a supplement. And I though my muscles still hurt at times, I feel 80% better!
Tested postiive for Babesia, Mycoplasma, EBV, HSV, Lyme still only 41++

Veteran Member

Date Joined Feb 2008
Total Posts : 900
   Posted 4/23/2009 3:14 PM (GMT -6)   
I have had muscle pain at times in different parts of my body that I know was either bart or lyme. I had them in strange places like my arm, one side of my back, my hip and behind one knee. But when I took levaquin the muscles in my back and one arm were so painful I was useless for over a month. I quit taking levaquin and it got better, although not gone. I tried another type of abx and it came back over night and was very severe - so I believe the abx can aggravate this problem. It took me a while to figure out it was not a herx and by that time a lot of damage was done.
I posted about DMSO this morning because it penetrates the skin going deep into the tissue and is used to transfer medications into the body. On it's own without carrying another medication, it is ant-inflammatory and helps with muscle pain. It also kills bacteria. I put some on my arm this morning and it feels a little better than it did - still sore by not aching all the time and so painful I cannot lift it.
I would ask yourself if you experienced this pain prior to treatment or if it has come about as the result of treatment. Was it constant or did it wax and wane which is typical of lyme especially when you are on abx. What other symptoms do you have beside muscle pain? Do you have twitches, cramps, pins and needles. . . ? If there is nothing else maybe you need to get off abx for a while to see if there is any improvement.

Regular Member

Date Joined Oct 2008
Total Posts : 222
   Posted 4/23/2009 5:08 PM (GMT -6)   
I have had pain as my number one issue for all the years of being sick and then fatigue.
I have lyme and bartonella and babesia and the mystery bug issue and well so for not treatment has helped and i wish I knew what was causing so much PAIN.
it is so hard to deal with and when on treatment it gets so much worse.
I am with you SickofLyme!! Big time!

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 4/23/2009 5:15 PM (GMT -6)   
I have very severe muscle pain. That is my main problem. It feels like I've been punched all over. My arms and legs are the worse. If I could get rid of that and the fatigue, I'd be so much better.
Symptoms started in 2003 with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder. Took Lexapro for two years and symptoms never got better. Suffered off and on for years.
2007 found an LLMD and was diagnosed with Lyme. WB was negative but had ++ on Lyme specific numbers. I decided to not do treatment because I didn't know enough.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, couldn't find the right words, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.

-Chronic Lyme Disease
-Hashimotos Thyroiditis

-Biaxin 250mg to start (starting slow and working my way up)
-Ultram(muscle/joint pain)
-Thyro Complex 60mg(Thyroid)
-Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 4/23/2009 9:40 PM (GMT -6)   
I used to get severe muscle pain until I increased my Magnesium intake.
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.

Veteran Member

Date Joined Aug 2006
Total Posts : 1161
   Posted 4/24/2009 11:37 AM (GMT -6)   

Some LLMD's spend too much time chasing lyme and many of the other issues are ignored. I'm a firm believer that these other infections are the main cause for lack of energy and muscle fatigue upon slight exertion etc. Sometimes it is a waste of time and $ to take test upon test to figure out what infection you have.

Many in the lyme world find better results when they start to try different med combos that target different organisms besides bacteria. I spent 2 years chasing lyme with amoxicillin, doxycycline and omnicef. I only received about a 50% decrease in symptoms. Then i started to explore different meds, Biaxin, Roxithromycin, Bactrim, Artmenisin, Rifampin, Minocycline, mepron, malarone etc. These were the meds that brought me near 100% of my former self. I think there are unknown protozoal infections, viruses, Bartonella, Babesia etc that are commonly missed.

Heck, some even have good results with antiparasitic meds such as ivermectin or alinia. Or antivirals such as acyclovir, valcyclovir, oregano oil, olive leaf etc.

Moral of my post, there is more going on then just lyme. Eventually you will find a nice combination with broad coverage that will bring you to the finish line.

Regular Member

Date Joined Oct 2008
Total Posts : 222
   Posted 4/25/2009 2:02 PM (GMT -6)   
I totally agree. Finding those right meds and getting to that place progressively is the trick.
I am so glad you got so far.
What do you feel about Pulsing and Cycling. That is where I am heading.
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