I have been treating a 46 year old woman with chronic Lyme syndrome for about 18 months. She resides in Montgomery County Maryland and her favorite hobby is(was) gardening.
Her presenting complaints were muscle pain, muscle weakness, fatigue, joint pain, neck pain, headaches- with an exacerbation of pre-existing migraines, night sweats, brain fog with forgetfulness- word recall difficulties- short term memory loss- slow cognitive processing and severe depression.
She in fact had no idea that she might be suffering with chronic Lyme disease when I suggested the diagnosis. She had been a regular patient for several years treated only for migraine headaches.
She had not shared her other symptoms with me because she was worried that I would think she was a hypochondriac. The muscle pain it turns out, was a prominent symptom. She had incapacitating pains in her muscles, especially around her neck and upper back area.
Her muscles were knotted and stringy and exquisitely tender. She saw a pain management specialist who diagnosed "fibromyalgia," and treated her with trigger point injections as well as a mix of pain meds.
This occurred during the 6 months prior to the Lyme diagnosis. Looking back, it is now clear that she had suffered with fibromyalgia for 20 years. She did not share her symptoms with others in her life.
She blamed herself. Somehow, she believed her symptoms represented a personal failing- as she struggled to keep up with other well functioning people around her. Only by sheer will and determination was she able to create the illusion that she was well, when in fact she was getting sicker and sicker.
Finally, almost inadvertently, she shared her story with me.
Her exam had classic Lyme neurological abnormalities. Her labs were fairly unremarkable. Her IgeneX WB for Lyme showed only a positive IgM 31 band with several other IND bands.
She wanted a positive test to be convinced she really had Lyme disease. I explained that the 31 band was highly specific. It took some coaxing, but she agreed to start treatment for Lyme.
She took Amoxil and Biaxin for about one year. She was nervous about changing medications so we kept to this one regimen. Most of her symptoms improved. Overall, she was 60% better.
Persisting symptoms included sweats- which thought were due to menopause AND there had been no change in the fibromyalgia piece of her syndrome.
I convinced her to try Mepron, believing that she had sero-negative Babesia. Her insurance turned down Mepron so I substituted Malarone, perhaps fortuitously.
Follow up labs continued to be seronegative for Lyme disease by IgeneX standards and Babesia. I also ordered a blood wet mount performed at Clongen. Extracellular motile organisms were present.
After 3 months on Malarone she noted that the muscle pain was almost completely gone. After five months on Malarone all signs and symptoms of fibromyalgia were 100% gone.
Her knotty,lumpy muscles were replaced with smooth, normal tissues. This is one very happy patient! Her "menopausal" sweats were also gone.
This is conjecture: She never had Babesia. The motile parasites seen in blood wet mounts may have been responsible for her muscle disorder.
We known that these parasites do not live in blood or blood cells- they are extracellular. This means they primarily reside in other tissues.
Their numbers must be so numerous that they egress into the blood. A likely place for parasites to live is muscle tissue. One must wonder: could fibromyalgia be caused by muscle parasites, at least in some patients?
This case shows remission of longstanding fibromyalgia with Malarone- used in conjucntion with Biaxin and Amoxicillin.
Posted by Lyme report: Montgomery County, MD at 5:26 PM
posted
WHAT? How can you conclude she never had Babesia? Muscle pains, stiffness, chronic pain, ect, have all already been connected to Babesia. Why do you propose her experience was any different.
I live in that same area, negative on all tick borne tests. Had all the same symptoms.
The Fibro went away on Levoquin quickly, the other problems are slowly going away with Mepron and Septra.
I too really wish I knew what I had, or at least to get a positive blood test for something. But at this point I just assume Bart and Babesia explain almost everything.
Maybe some XMRV too.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
THIS IS ME!!!
I have these knotty, muscle like things all in my body. They feel like bb's.
My therapist (who performs lymph massages on me said she had no idea what they were)
Malarone? Anyone ever use it?
I'm doing humaworm soon... won't it have similar effects? Kill parasites that are messin with my muscles.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
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I want my LLMD to treat my fibro symptoms.
I have those knots, neck pain, knees hurt, hips big time.
HELP! haha
So ask him about Malarone?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
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I never had any obvious symptoms of co-infections. My Lyme diagnosis was clinical & I did a combination of abx for 9 months & it didn't help at all. I only felt worse from the side effects of the abx.
I didn't want to just keep doing them with the belief that they may work someday. I don't think it's a good idea to just keep taking abx endlessly.
I had a Fibromyalgia diagnosis for 9 years before anyone ever considered Lyme. I was going back to thinking it was Fibro or XMRV.
It's possible it may have nothing to do with Lyme. They are not sure it's actually Babesia. It might be something "new" or undiscovered...?
I never tried Malarone. My doctor said if it's going to work you will know pretty quickly. Seems worth a try since I'm still ill after 14 years. This lady's story from the blog seems similar to what I have gone through.
I have done Humaworm & other parasite cleanses. They are good but I don't think they can get to this pathogen. I'm not sure abx will be the end of it but it's worth a try.
Anything to try to stop the pain is worthwhile as long as it's not an open ended ticket. I just don't like that idea of treatment. There are also herbs, Rife & other possible alternatives.
I don't mind doing a short course of abx if it will really help, though.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
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up
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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