posted
My Igenex and MDL labs for bartonella and erlichiosis have always been nl, altho I was a CDC positive WB IgM for Bb.
After exertion like a touch football game, I might get little, quickly migrating twitches in my legs.
Last week after my most recent game, the next day I could barely walk: lots of muscular quadriceps pain, then hip flexor pain, such that I had to lift my thigh myself when sitting if I wanted to cross my leg and it was hard to walk and do stairs.
I bet I had rhabdomyolosis -- muscle break down. It still hurts after one week in my quads and hip flexors.
Often I have sole pain.
I get migrating pains in arms muscles and legs.
When I took Levofloxacin (levoquin)for a couple weeks in combo w/ something else I had a huge surge in burning hip pain and shoulders -- such that I have stayed away from Levoquin since then.
I've been doing oral abx for about a year. Also have ear/teeth/brain pains and sleep disturbance.
What do y'all think? Bartonella? I watched Dr. B's dvd about it and he says Levaquin for 8 weeks for Bartonella (like organisms). But maybe it's erlichia? I don't think I have babs.
thanks in advance!
Posts: 211 | From NC | Registered: Dec 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi mtnwoman,
I am sorry you are in pain. Pain stinks!
Here is some information on Bartonella, maybe something in here will help?
Tincup's
BARTONELLA ALERT It is well known that co-infections may occur with Lyme Disease relatively frequently. Patients with a history of Lyme Disease who have incomplete resolution of symptoms should be evaluated for Bartonella infections.
Bartonella is an intracellular, gram-negative bacteria that can become chronic. Certain lab tests may not detect the infection due to a variety of strains and the lack of sensitivity of the tests.
It is advised to use both PCR and IFA methods of testing and not to dismiss the disease due to negative tests when symptoms are present. Various Bartonella species have been recognized since the early 1950's. Bartonella may not present in its usual form when additional infections, such as Lyme or Babesia are present. In addition, typical Bartonella lesions are not always seen in patients, therefore, a diagnosis of
``fever of unknown origin'' should alert a physician to consider Bartonella. It is estimated that approximately 2/3 of the patients with Bartonella have a fever. Involvement of practically every organ has been reported.
There are a variety of symptoms associated with Bartonella, including, but not limited to, the following:
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus).
Headaches, Cognitive Dysfunction, and CNS Lesions may be evident. RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck.
The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show somehyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema.
BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
TREATMENT: You MUST consult a knowledgeable physician for information on treatment for disseminated Bartonella. Some of the medications which have been used in the past have included Doxycycline (with or without Rifampin), Ciprofloxacin, Erythromycin, Azithromycin, trimethoprim-sulphamethoxazole, gentamicin, and other macrolide antibiotics.
Posts: 6638 | From Michigan | Registered: Jun 2001
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
More information from Liz....
"I had bart for years, and started getting better immediately with rifampin + ketek treatment. If there is any chance at all you have it, you have to treat for it. The symptoms can be interchangeable with Lyme, and even worse, they can be partially suppressed by Lyme drugs.
Without any treatment, bart begins as a relapsing fever that has neurological side effects: disorientation, mood changes, difficulty with reading, concentration, mild attention deficit disorder. A s it progresses, you get splitting headaches, swollen lymph nodes, sore throats, shin splints, body aches, severe neurological disturbances, severe ADD, insomnia, extreme fatigue, scratchy eyes, thyroid problems, blood seeping continuously from your nose, and eventually psychosis. Yes, you read that right.
I've been thinking about a PICC line as a last resort for the most hard to reach Lyme. With bartonella treatment, however, I went from being almost completely disabled by relapsing fever and fatigue to 90% remission in a couple of months. I still have mild symptoms of everything, but at least I can hold down a job and exercise again. Although I always had one personality while I was sick, I had lousy impulse control and would get angry over nothing. The final destination would not have been pleasant. "
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
Should have added that I suspect a co-infection cuz I get symptoms recur within a day or two of stopping abx.
Posts: 211 | From NC | Registered: Dec 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Dr. B's DVD mentions sole pain as Bart. I did not get sole pain until I went on Levaquin - and my Bart test turned positive then, too.
Levaquin and other quinolones can cause tendon problems EVEN AFTER you have discontinued them.
How long ago were you on Levaquin?
I first developed some heel pain right before I gave up on quinolones. But two months later is when my Achilles Tendon pain/weakness became full blown. I've suffered with it for months.
I tested positive for both strains of Ehrlichia, too, but the tests show they have responded to treatment.
I have lots of burning/nerve/electric shock, twitching, jerking, tremor and muscle pain that has not responded all that much to Lyme medications, so I presume it's Bartonella. I just started Rifampin and am getting worsening of electric shocks and some muscle pain. Probably a Bart herx.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Should have added that I suspect a co-infection cuz I get symptoms recur within a day or two of stopping abx.
Posts: 211 | From NC | Registered: Dec 2005
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Are you going to do Ketek and rifampin? I'll be curious how you respond. What were your Erlichia sxs?
I last did Levaquin at least 6 months ago for only a couple weeks - I couldn't handle the pain and stopped it. Maybe I'll retest for bart.
I had sole pain before any antibiotics. It comes and goes.
Posts: 211 | From NC | Registered: Dec 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
quote:Originally posted by mtnwoman: Jill,
Are you going to do Ketek and rifampin? I'll be curious how you respond. What were your Erlichia sxs?
I last did Levaquin at least 6 months ago for only a couple weeks - I couldn't handle the pain and stopped it. Maybe I'll retest for bart.
I had sole pain before any antibiotics. It comes and goes.
I can't do Ketek ever again. I was on it in 2005 and had such severe liver damage that I was on the verge of needing a transplant. My liver biopsy showed I was already in liver failure, but I refused to go on steroids so I had to go off all treatment and heal.
Because of what Ketek did to my liver, the doctors are very concerned about any liver-toxic medications. It tooks months of discussions between my doctors to finally allow me to try Rifampin because it's hard on the liver. But I've been getting so much sicker, we presume it's Bart and I had no choice.
So I'm starting on a less-than-pediatric dose and having my liver enzymes checked every week.
The sore soles do sound like a hint that Bart may be part of your issues.
I have no idea what my Ehrlichia symptoms were because Doxy was my first medication and that works on both Lyme and Ehrlichia.
I can't say that any particular symptom has gone away completely except my hip pain, and most of my knee pain, so maybe joint pain was an Ehrlichia symptom for me.
Good luck! Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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You might want to check out the herb chanca piedra, it has some liver support qualities. I use Rain-Tree.
Posts: 211 | From NC | Registered: Dec 2005
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posted
I had severe sole pain or heel pain for a very long time. I did test positive for Bart about a year after being on Minocycline (2 years now). I haven't had that pain in a long time since starting the Mino.
I do think some of your problems may have been from the Levaquin. I agree with Jill's statement... "Levaquin and other quinolones can cause tendon problems EVEN AFTER you have discontinued them."
I would ask your doctor to try you on a different abx and see what happens.
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