My symptoms have changed -- pain is now more a problem (muscle, jaw, and foot) than it has been in the past. Other symptoms are better. Others are the same.
I know these symptoms are inflammation. Are they attributable to anything in particular?
Posted by seibertneurolyme (Member # 6416) on :
Have you changed meds?
Hubby is pretty much in the same boat. He has had a pain issue for about 3 or 4 months -- a new symptom for him.
Seems to be caused by 1 of 3 things -- can't figure out which or exactly what to do about it.
He got an IV drip of the drug Reclast to treat his osteoporosis -- this made his tendon pain much worse and he has ached in some new places since this injection. His blood calcium keeps runing low although I am giving him supplements of several kinds of calcium and magnesium.
Pain actually started on Factive and then he switched to Levaquin and then got the Reclast injection.
But he was pulsing tindamax and Factive and the tindamax seemed to really bother him.
So for hubby it seems like it could be because he was treating lyme cysts for the first time in years or from the bart treatment or the Reclast injection.
He is on high dose rifampin now plus Minocycline and low dose Clindamycin pulsed with low dose Zithromax. Just got some bloodwork back today -- 2 weeks since increasing the Rifampin and he also increased his stephania tincture.
He ran a fever for a couple of days when increasing the rifampin from 600 mg to 900 mg and now the bloodwork is showing increased destruction of red blood cells -- bilirubin is more elevated, hematocrit has gone low, red and white cells have both gone low and one liver enzyme is high plus urine analysis has some issues as well. In just 2 weeks his bloodwork has changed and may be the weirdest I have ever seen it -- had to look up lots of new medical terms such as giant platelets.
But the crazy part about hubby's pain is that it is worst at night -- he can be fine when he goes to bed and then in an hour or two he wakes up from the pain and if it is bad it will cause shaking and either dry heaves or coughing spasms. Sweats go along with this sometimes also. Mostly just mild sweating on face and upper body.
Hubby says exercise actually helps with his pain. Other than that -- not much that I have tried helps.
My rambling probably didn't help you much, but it helped me to get the timeline straight on hubby's issues.
If I had to guess -- for hubby at least I think his pain is from bart or mycoplasma or whatever this mystery pathogen is that we are trying so hard to treat.
I just increased the stephania yesterday (from 3 to 4 droppers 3 times per day) and it caused hubby to have some sweaty spells in the daytime, but he thinks his pain is better today. The stephania has anti-inflammatory properties plus it is an antibacterial.
Bea Seibert
Posted by lymebytes (Member # 11830) on :
Hi Cd, Well as you know this has been my major issue severely since this started. I can tell you I do agree with the other poster, excercise helps. I found weights too stressful on my nervous system, aerobics too. I finally started a resitant band program and I LOVE it! I am actually building muscle from it and am only near 90 days of workouts. No matter how crappy I feel, I force myself to do them. Dr. Burrascano is right, he always says without excercise we will not get well. It took me forever to get into a regular program, but it helps a lot and you know I keep saying infrared sauna..awesome. If you have access to one, use it.
Interesting, our mutual friend J, said that she has had more pain since IV too. Cognitive was more her problem, but pain is now up too. I also saw a post of another woman recently,same thing, she didn't have much pain before IV and now does for some reason.
Muscle pain can be Lyme or Ehrlichia. Foot pain, Lyme or Bart.
But it seems like you hit all of these co's really good. Maybe your body just needs time to adjust?
Are you on orals? If so, maybe they are hitting something.
I hope these symptoms subside soon.
Posted by seibertneurolyme (Member # 6416) on :
lymebites,
Now you have got me thinking maybe hubby's pain could be from ehrlichia -- he had one test that was kind of indeterminate for that. And this is the longest he has managed to actually stay on rifampin -- has been 3 1/2 months now. Plus the white count dropped with the increase in rifampin.
Hubby has had a goal of finally getting through 6 months of rifampin for about 3 years. Hope he can hang in this time and maybe then we will get back on track.
Bea Seibert
Posted by lymebytes (Member # 11830) on :
Hi Seibert, Yeah, I struggled w/Ehrlichia long time because I just cannot take the Tetra's. I started taking Olive Leaf Extract and about the same time drinking 1/4 tsp of Himalayan sea salt (both approved by LLMd) in a quart of water daily (milder version of the salt/c protocol). I do take abx, but none that would hit Ehrlichia and after I started the two above my titers starting dropping amazingly. I am not sure which is working, but I get tested for co's every 90 days for a couple of years and suddenly they titers just started to drop, with each test consistently and persistently, I was so happy to hear recently the IgM went negative, a mystery. I figure one of the two things I added last year is hitting it somehow, or my immune system I guess.
I had HORRIBLE muscle pain w/Ehrlichia, especially in my legs - all throughout.
Rifampin should hit the Ehrlichia, if not taking w/Doxy can hit resistant cases.
I hope he feels better.
Posted by CD57 (Member # 11749) on :
Lymebytes -- if you were taking Olive leaf, isnt that more of an indicator of a virus?