posted
I was diagnosed with Lyme in 2009. Before the test came back positive they said it was fibro. Once the pos. test for Lyme came back fibro was never mentioned again. Makes sence to me since so much of it is undiagnosed Lyme.
At my last LLMD appt. I asked what I can do about the pain that never seems to go away. The Tramadole just does'nt always do it anymore. He said to talk to my regular dr. about it. So I did.
He went through the test for fibro. by touching all the spots that are suppose to hurt to get a pos. diagnoses. They all were painful. The thing is they have been painfull for the past 20 years or so I just did'nt know they were'nt suppose to be.
He gave me Cymbolta and I think it is actually starting to help. They pain is so much better. Finally.
So, now I am pos. for both Lyme an Fibro. Is this even possible? Anyone else ever hear of this?
Posts: 48 | From Eden Prairie, MN | Registered: Feb 2010
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posted
Sure .. many here have both ... assuming you believe that Fibromyalgia is a SEPARATE issue.
I was dxd with FM in 1980 .. finally properly dxd with Lyme in 2000. I would say my FM symptoms are gone .. especially after going gluten free 6 yrs ago.
Perhaps you are not fully recovered from the Lyme??
(ps .. there is no known cause or cure for FM.. Lyme sounds like a huge possibility to ME!)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Yes, my first "diagnosis" was fibro, and I went 25 years looking for what it was.
Then I found out I actually got Lyme disease, from a known tick bite. I can date every symptom, which makes it very clear for me - 18 months later, I had full-blown fibro.
When I found out it was Lyme, I tried to contact as many folks as I could from my fibro days, and by then, in the mid 2000s, they had found out it was Lyme, and some had co-infections.
Also, if you watch the Lyme film, "Under Our Skin," which you can do for free at www.hulu.com, you will see many Lyme patients saying they were first diagnosed with fibro.
We're all different when it comes to what can treat. I was lucky that the first treatment I tried worked.
I took oral clindamycin, 150mg, every 6 hours for a week. I was able to take the fibro pain to ZERO in a week's time. Then I took it every 8 hours.
I herxed in a month's time, and then dropped back to 150mg 2x/day and that held me for 5 years, when the abx stopped covering.
Now I get bulk turmeric powder, capsule it, and do a few of those a day. It can ease the fibro symptoms.
Treatment for Lyme occurs in three categories: kill/deter the organisms, detox, and fortify. You've had symptoms for 20 years, you say, so you will need to study what people do.
You can google for and read the Burrascano 2008 guidelines.
You can use the search function at the top of the page, type in any word or phrase, and archived threads will come up that you can read. I call it going to Lyme school. We're all different when it comes to what works.
It also helps to have a really good Lyme doctor to work with, also go to area support groups.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Initially, I was diagnosed with FM and CFIDS. The fibro pain has improved greatly since being on the correct dosages of combination ABX AS WELL as
keeping my thyroid levels in check (FT3, FT4 and anitbodies). Correcting my thyroid dosages has (IMO) contributed the most to my pain relief.
I, personally, do not believe Fibro is a separate issue -- it's a wastebasket diagnosis...
Posts: 396 | From EAPennsylvania | Registered: Dec 2007
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posted
I was also diagnosed first with fibromyalgia- the muscle pain, tenderness, knotting and stiffness are still my number one symptom, despite treatment for Lyme. However, I've been reading a lot about this lately, as I am now being treated for Bartonella that was undiagnosed/untreated previously, and this is what I've gleamed from the various things I've read:
Bartonella causes a lack of oxygen delivery to tissue, leading to all kinds of muscle and fascia (connective muscle tissue) damage. It leads to Myofascial Pain Syndrome (MPS), which doctors often misdiagnose as Fibromayalgia- OR, you can have both. Myofascial Pain Syndrome is where your trigger points aren't just sensitive due to overactive pain signals (fibromyalgia), but due to actual knots and stiffness in the fascia. Therefore, there is an important distinction between fibromyalgia and MPS. Drugs like Cymbalta (which put me into a state of psychosis requiring a stay in a mental hospital, by the way), calm the nerves that are telling you there is more pain than there actually is with Firbromyalgia. With MPS, there REALLY IS THAT MUCH PAIN. Your brain is not over-perceiving it.
Therefore, if your issue is MPS, the Cymbalta will only mask the pain a little- but you need to fix it, not mask it! If you have a lot of knots like me (my massage therapist and old physical therapist agree that I'm the most knotted up and stiff-muscled person they've ever worked with), then your problem is probably more MPS than fibro, although again, you could have both. Lyme can cause MPS and Fibro, though Lyme is not the only possible cause. I'm suspecting, though, that Bartonella is the primary cause for me, and for most people who think that Lyme is the culprit of MPS.
I am treating Bartonella with Rifampin and Clarithromycin right now, am AVOIDING strength-training other than gentle yoga, am stretching a lot, getting massages, and doing longer sessions of mild cardio so that I can get oxygen flowing to my tissues. Oxygen is vital for getting rid of the trigger points. If you can't afford hyperbaric chamber therapy (I certainly can't), then deep breathing and aerobic exercises are your new best friend if your case sounds like mine.
This is all helping me....oh, and you do NOT have to have the Bartonella rash to have Bartonella. And like lyme, the tests aren't very good. I would suggest going by symptoms and seeing if your doctor is willing to treat you, at least experimentally. If you have a big neuro herx as well as pain herx, you'll know you're on the right track. I don't believe the antibiotics used for lyme are effective enough to kill Bartonella.
Please note, I am NOT a doctor- I'm just going sharing info that I've read. Please consult your doctor, of course. If I can help at all, please email me.
Posts: 107 | From Hesperia, CA | Registered: Feb 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
An LLND came and spoke at a support group meeting. She stated that 95% of all people diagnosed with Fibromyalgia test positive for Lyme (IGeneX criteria). And where there is a positive Lyme test, there is likely also coinfection issues.
But I also believe Fibromyalgia may be caused by:
Hypothyroid (even if blood levels are considered "normal" by most MD's, the levels may be too low for the individual)
Magnesium Deficiency (this was the culprit in my case...all my muscle pain disappeared when I started taking magnesium supplements)
Other nutrient deficiencies (B-Complex, esp. Vitamin B12, are needed for proper nerve function; Calcium & Magnesium & Potassium are needed for proper muscle function, Vitamin C is needed for healthy connective tissue, etc.)
Non-Celiac Gluten Sensitivity or Celiac Disease - gluten can cause the creation of antibodies that attack the nerves, skin, gastrointestional tract, or possibly other areas of the body (hormones in my case), in those with Celiac or non-Celiac Gluten Sensitivity.
And I have to put Candida on the list because I've heard of people with a wide variety of symptoms that go away when Candida is addressed.
-------------------- -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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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Fibromyalgia is a label for a list of symptoms. It doesn't identify the underlying cause. So fibromyalgia is a wastebasket diagnosis. BTW, it seems to me that your LLMD should have been able to handle your pain issues instead of telling you to consult with your PC about it.
Posts: 2541 | From Northeast | Registered: Jan 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
To me, Lyme can be a "wastebasket" diagnosis, too... The tests are not accurate - so, no one really knows. There are many co-infections which can actually be even worse that Lyme, itself. I don't know why they are all glommed together. They are each quite serious.
I also had fibro & CFS diagnosis'. I really don't know what I've had or have. I think you just have to try things & see what works. The abx did not help.
What did seem to help me the most - recently - are anti-parasite protocols & pain meds. Cymbalta & Lyrica were of no use to me. Some people may need other things like changes in diet, anti-virals, light exercise, saunas, etc.
Don't be afraid of taking something for the pain. Chronic pain is very debilitating. There's no use suffering while you may have to spend time figuring out what exactly is making you ill.
Maybe try to locate a pain management specialist?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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