Topic: Has anyone recovered from "fibromyalgia" muscle pain with Babesia treatment ??????
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi,
I had a negative Babesia FISH test.
I do not have air hunger, a cough or drenching night sweats.
I do have hot flashes and sleep problems(both are better since starting bioidentical hormones), fatigue, and lots of muscle pain and stiffness...among other things.
I am considering Babs treatment at the suggestion of my LLMD.
He was agreeable to waiting a little while to see if I improved first with lyme treatment since I do not have prescription coverage.
I have been treating for 5 1/2 months with improvement in sleep and hot flashes.
I will know that I am getting better when the awful muscle pain and stiffness of 21 years starts to decrease.
I am reading that people with Babesia usually have muscle pain instead of joint pain.
Has anyone here recovered from the "fibromyalgia" muscle pain with Babesia treatment???
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I've recovered from the fibromyalgia but don't know that it was specifically the babesia treatment. Even now that I'm pretty much in remission I still get the fibro if I don't do my detox protocols. I think much of it, for me at least, is toxicity.
I do lymphatic drainage massages, exercise, and coffee enemas once in a while for detox. Plus lots of water. Moving around is essential .... I spent two days in the car and it's acting up a bit, but nothing like when I was ill.
I did have babesia .... and bartonella.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
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Member # 15067
posted
Dekrator48, wow it's so hard to read you're not making any progress in this area when I know you follow protocols to a tee. Things like this make me question LLMDs Dx of Lyme when it comes to muscle stiffness/pain. I have the stiffness a lot when I do stuff. Sometimes I think docs bark up the wrong tree and blame too much on Lyme/cos. Only time will tell. I wish you luck.
Six, you've done so many treatment protocols and quite aggressively that it's hard to attribute exact symptom improvement to any one disease IMO. Unfortunately, it's like this for many and always makes us wonder...what helped? At least at the end it did!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sixgoofykids
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Yeah, that's what I'm saying seek .... not way to tell if it was babs.
Since the fibro still comes back without detox protocols, I'm thinking it's toxin oriented for me. Maybe mold? I still have a moldy bathroom ... maybe that's my constant source of toxins?
I could tell which meds were helping which symptoms because we changed them around so much, but not all at once .... so that's how I have hunches about what disease caused what symptom.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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TF
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Member # 14183
posted
My lyme doc cured himself and 2 of my friends/acquaintances of fibro with lyme and babesiosis and bartonella treatment.
In Maryland, virtually everyone with lyme also has babs and bart.
My lyme doc said that all his fibro patients test positive for lyme. And good lyme treatment gets rid of fibro in nearly all his patients.
I had babs and I did not have air hunger, a cough, or night sweats either. But, the babs was seen under the microscope (whatever babs test the doc ordered from Igenex), so it is for sure that I had it.
I expect that lyme and good coinfection treatment should get rid of your fibro. and all of its symptoms.
Do you know that Burrascano says that "it has been published that as many as 66% of lyme patients show serologic evidence of coinfection with Babesia microti. It has also been reported that Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness." (p.23)
My case was most likely considered mild.
Posts: 9931 | From Maryland | Registered: Dec 2007
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AliG
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Member # 9734
posted
TF- Is Rifampin used in your LLMD's Tx?
I was just reading about a more resistant form of Anaplasmosis/Ehrlichiosis that may require the addition of Rifampin to eradicate.
It's also known to cause muscle pain, not joint pain.
The headaches involved would be more sharp, knife-like, and often behind eyes.
Rapid onset of illness with fever, headache, prostration.
Have you had any kind of headaches at all, Dekrator?
You can find this info on pages 24-26 of [url=http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf]Dr. B's - Advanced Topics In Lyme Disease[/url)
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I always thought the muscle pain was from bartonella. It was clearly bartonella with my son, as it went away when we gave him Rifampin.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme doc follows basically the Burrascano protocol.
He did not use Rifampin with me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TerryK
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Member # 8552
posted
Not with babesia treatment but with IM ceftriaxone. There is no doubt whatsover that is what made the difference.
I was diagosed with fibromyalgia many years ago but I'm sure I had it long before I was diagnosed. I had severe fibromyalgia pain for 9 years. HUGE improvements with IM ceftriaxone. 70% improvement in pain. Not a day goes by that I don't think of how wonderful it is to be able to move without that horrible pain.
Many months since being off and the pain relief has held. I still have pain but not the horrible level of pain that I had for so long. I don't know how I lived through it.
Prior to that I was on many abx and treatment for babesia, bartonella and lyme. I have had significant improvement in symptoms in my 3+ years of treatment although I'm still very sick. Even though I had major improvement in some symptoms, the pain was still horrible until the ceftriaxone.
IM ceftriaxone was amazing for me and I plan to go back on very soon. If I can't tolerate it due to the local reactions I was having, I'll have to go IV. I think some people need ceftriaxone in IV or IM form. For those who don't know, this is generic rocephin.
Bottom line, I think we each need to find the right abx for our strain, combo of bugs, detox issues etc.. Some of us need the deep penetration of IM or IV rocephin in order to get rid of some of our symptoms.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymednva
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Member # 9098
posted
Babs can cause large muscle pain. Mine got better when I treated Babs, then I relapsed and the pain got worse again.
I'm in the middle of my second go round of Babs tx. Pain is improving, slowly.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Sixgoofykids,
Thanks for your input. I do exercise regularly.
I just wish I knew for sure if I needed to treat for Babs because of the expense.
Seekhelp,
I want to believe that the fibro is from either lyme, bart or babs...or all of them,and that it will get better.
Plus my symptoms/illness started with a flu like illness and progressed to throbbing joint pain and then to the fibro muscle pain 21 years ago.
For years I thought it was a viral cause. Now it all makes sense for lyme and co's.
I already did antivirals 2 years ago with no improvement.
I want so much to hear hope filled stories of others recovering from this.
TF,
It is good to hear that your LLMD recovered from the fibro along with 2 of your friends. That does give me hope.
I probably will just have to bite the bullet and try treating for it.
Thanks for replying.
AliG,
The only time I have had headaches is in the past 17 months.
At that time I tried Ambien CR for sleep and it caused a huge exacerbation of neck/shoulder pain and stiffness and excrutiating headaches that felt as if a huge drill was drilling through the base of my skull and coming out my mouth.
I was stuck in bed for the first time ever since becoming ill 21 years ago.
That lasted 24/7 for 4 months! I thought I would die.
I kept taking the Ambien CR because the pain was so bad I wanted to sleep and my insomnia was really bad...and I didn't know it was causing the problem.
It turns out that the Ambien CR must have exacerbated the lyme and co's in the central nervous system.
When I discontinued the Ambien CR the huge headache stopped 1 week later.
The horrible neck/shoulder pain and stiffness has never gotten any better.
I also have pain and stiffness all over my body, but the neck/shoulders got MUCH worse with the Ambien CR.
Now I just get dull headaches sometimes in the back or sides of my skull due to the constant neck pain and stiffness.
Thanks for your reply. I was also reviewing Dr B's info. It's hard to figure out sometimes which infection is causing which symptoms.
tickbattler,
Thanks for your reply and thoughts about bart. I tested positive for bart.
I think my LLMD said he uses Rifampin later in treatment. I will ask him about it again.
TerryK,
Thanks for the info and your experiences with ceftriaxone. I am happy that you have had success with it.
I will keep that in mind.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
lymednva,
Thank you for replying with your experience.
I am hopeful when I hear that others have had some success.
I hope you recover without relapsing again.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Clindamycin 150mg around the clock stopped my fibro sx within a week. And clinda still continues to treat it.
Posts: 13171 | From San Francisco | Registered: May 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thanks Robin!
I am keeping all of this info in my mind to discuss with my LLMD and see what the next plan of action is.
It must be such a relief to be free of the pain.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
mepron and zithro have greatly reduced muscle and joint pain. now the major problem is weakness. i mean so weak i can not stand up or raise my arm.
i really feel babesia is a huge problem for me even though i have always tested neg. probably bart too. the fact mepron reduced these two significantly, confirms for me babesia was causing this.
Posts: 262 | From nj | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
have you seen the recent post on www.Lymemd.blogspot.com? This addresses your topic EXACTLY....."fibro" patients got well with malarone.....check it out.
Posts: 3528 | From US | Registered: Apr 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
njgirl14,
Thank you for your response. It is good to hear that your muscle pain was greatly reduced.
It is a shame that you are now so weak.
I wish you well.
CD57,
Thank you for posting that. Yes, I happen to read that blog a couple days ago, which really made me think that I should treat for babs.
I will be discussing this with my LLMD when I see him next. I think I will have to break down and buy the mepron.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I had horrible muscle pain for a couple years which is now gone by treating the Babs.
I will also think it is worth noting that my LLMD said many of the viruses that I have cause muscle pain, too. And not to underestimate the way they react in the body. Definitely never read nor heard these viruses can cause muscle pain, but then again, she is learning a lot about the role viruses play in lyme disease.
Posts: 103 | From Northern VA | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
lemonsnotlymes,
Thanks for replying with your experience.
I am very hopeful that babs treatment will help the muscle pain and stiffness.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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I wish you luck.
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