posted
I wanted to hear from the people that were diagnosed w/fibro and found out it was lymes, was the deep muscle pain one of the last symptoms to go away? what about the fatigue? it seems my most serious symptoms like pvc's and neuro symptoms are going away but not the rest, I mean I can definitely feel the lymes still in me, I'm on aggressive tx. thanks
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just a quick reply due to the late hour.
Please be sure to be tested for babesiosis, WA1 (B. duncani) and Babesia microti. Many of the folks I see with fibromyalgia symptoms are Babesia infected.
They also saw more improvement in the fibro symptoms when treating for Babesia.
posted
I was dx with FM six years ago and just dx with Lyme in Jan. 2012.
Deep muscle pain/aches and debilitating fatigue are still symptoms for me, hasn't gone away yet. I'm in my 8th week of treatment, I think, with multiple abx.
This probably doesn't help you much because I just started; this battle; many others will give you more helpful answers, hopefully.
I hope your pain and fatigue get better very soon.
Posts: 331 | From West Coast | Registered: Jan 2012
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-------------------- diagnosed with fibromyalgia 1992 Lyme disease Jan 2011 give it all to the LORD everyday Posts: 38 | From southwest michigan | Registered: Nov 2010
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
One of my diagnosises before I knew I had Lyme and co's was Fibromyalgia. I went many years believing I had that "with something neuro going on" according to doctors, but they could never trace it.
I've been on treatment for Lyme, Bart and Babs for 5 years plus with Babs being the one I appear to have the hardest time resolving.
Through treatment, my Fibro symptoms have waxed and waned, but are definitely not to the levels of the original pain. Treatment does settle it down.
I can go for very long periods of time where I don't even FEEL the Fibro anymore and it might come back for short periods of time, but I'm definitely making ground, so there is MAJOR hope for that.
Good luck to you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Fibromyalgia is not a disease, but pain resulting from a bacterial/viral infection. Non Lyme-literate doctors always label this a "psych" problem, i.e. "It's all in your head", when they can't figure out what it is.
BTW - the disease is Lyme not Lymes.
Posts: 8981 | From Illinois | Registered: May 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I was diagnosed with "fibromyalgia" in 1987. After a flu-like illness and subsequent throbbing joints which subsided, I was left with all-over muscle pain and stiffness.
I was finally diagnosed with Lyme, Bart and RMSF in 2009. I have been treating 3 years.
The only symptoms that still bother me are all-over muscle pain and stiffness and neck pain and stiffness. Both are better than they used to be due to doxy, diet, exercise and bioidentical hormones.
I tested Neg for Babesia. I did treat with Mepron for 2 1/2 months, but I cannot afford to treat with Mepron for longer because I pay out of pocket for meds.
-------------------- 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
Treating for parasites via Dr. K's anti-parasitic protocol helped my fatigue immensely. There are still good days and bad days, but the bad days are working with 60% energy instead of 20% energy. Many days I'm at 80-95% energy-wise, including some 100% energy days.
Echoing Lymetoo, I know several people whose fibromyalgia completely went away when they went gluten-free.
I am not done treating at all, but finally my husband and I feel there may be a light at the end of the tunnel.
Good luck!
-------------------- Garden
"Fibromylagia" for 8+ years Pos IgeneX WB per both Igenex and CDC Pos Neuroscience MyLymeImmuneID Started tx for Lyme in March 2011 Posts: 245 | From East Coast | Registered: May 2011
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posted
I had an FM dx for 25 years. I have Lyme and don't think I have any co-infections.
I hit the jackpot right away with oral clindamycin, 150mg, which I did every 6-8 hours for the first month. All pain went away in a week's time! I herxed after a month, then backed down to 2x/day.
It completely took all pain away. That's why I say I think it's a matter of finding out what's going to treat us.
It worked for 5 years, then stopped working. I'm now doing a combo of teasel root tincture, 5 drops/day, and curcumin capsules, 500mg 1x/day.
That combo keeps down FM and joint swelling for me.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
i was also dx with fibro. Alot of my other symptoms have gone, but the one's that remain are pain, excruciating pain, muscle pain, joint, and fatigue. I think the anxiety has gotten alot better, but still not 100% back to my old self yet there. I have been treated for babs, but it doesnt seem to help me. I dont know what to do anymore.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
I had fibromyalgia. I was diagnosed with it by my LLMD who did believe it was caused by the Lyme, but with the diagnosis, I could take Lyrica.
It was one of the last things to let go.
Exercise is critical. I don't mean go run a triathalon, I mean, get out there and move as you are able. I like pilates because it reaches the deep, internal muscles that get so achey.
My fibro is completely gone.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
six , what about on a treadmill? I mean it hurts to do it, but do you think at a decent rate, I noticed Dr. B. guidelines is no aerobic exercise until feeling better, so I didn't know.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
hoping and praying- I am aware the disease is lyme not lymes, it's actually a slip up a lot of people make, for some reason it's natural to say lymes rather than lyme, I'm working on correcting this, unfortunately I've been suffering for nine years, just recently diagnosed, and recently out of the hospital, again, so that is actually the least of my concern right now.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I was diagnosed with Fibromyalgia (later discovered it to be an incorrect diagnosis - Lyme and magnesium deficiency was the cause) in 1999.
Started taking magnesium and the muscle pain has never returned.
Fibromyalgia symptoms can be identical to hypothyroid, Lyme, magnesium deficiency, chronic dehydration, and many other issues.
I personally believe Fibromyalgia to only be a symptom, not a disease, and too many doctors cop out by giving this diagnosis instead of looking further into why the patient has the pain.
Just my humble opinion...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
thanks everyone so much for the info. the reason I want to know this stuff is because I believe I can get through treatment better if I know some of my "fibro" symptoms will also get better, I'm still pretty doubtful.
Tincup: you mentioned babesia, yes I just reviewed my labs again and it's on here babesia microti dna in range not detected, I have, the lyme disease western blot, which is reactive(above cdc criteria), then typhus which was detected, and rmsf(detected).
lymetoo and garden: I've considered changing my diet to gluten free, it just seems impossible, everything I eat is everything you shouldn't eat, and I'm smoking too, which I know is terrible, but it's the only thing that gets me through this. I know I definitely have to limit my sugar because of the yeast and everything and even in fighting the lyme.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
yes I do believe fibro is more of a symptom, I just wish I knew if it's been lymes all along, I know I might never know, it was just wierd I remember about 10 years ago getting more tired and tired and then about 9 years ago, in the summer I woke up one day and I felt like a trainwreck, I remember getting a bad cold and being nauseated, no rash that I remember.
And then came the muscle pain, started in my back, and then a month later, total pain and stiffness everywhere, chronic migraines in the back and sides of my neck and behind my eyes. But I've had some neuro symptoms throughout the years.
Some numbness in my right arm that traveled up to my mouth and tongue, then I went blind for about 20 minutes from all these black floaters, but it went away and never happened again.
But I am hopeful, I have a good llmd that just told me he often consults with Dr. B from time to time, so that makes me comfortable, and I guess only time will tell.
thanks everyone.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
Shannon, there are many strains of babesia that can't be tested for, that's why I suggest taking a good look at a symptom list for any of the infections to see whether you think you match them at all -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
shannon12 - it was not my intention to hurt you by correcting "Lymes" and I am sorry if it did. I agree with you that it's not important in the big scheme of things! Just wanted to help.
Posts: 8981 | From Illinois | Registered: May 2006
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quote:Originally posted by shannon12: six , what about on a treadmill? I mean it hurts to do it, but do you think at a decent rate, I noticed Dr. B. guidelines is no aerobic exercise until feeling better, so I didn't know.
I think walking is good. Too much cardio is not good for anyone, IMO. And Dr. B says no cardio until the stamina has returned. This time of year, I'd walk outside!!
What I like about Pilates (or other disciplines that work deep muscles - yoga, various martial arts, etc.) is that it's working deeply. These disciplines are also not cardio. Pilates does become cardio at an advanced level, but few ever reach that level of work.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i was diagnosed with "myositis" way back in the early 80's. so i bet i've had it at least since then.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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