Hi everyone, I was just diagnosed with Babesia yesterday. I haven't been well for the last 6 weeks or so. I have a bunch of questions that I hope you may be able to answer for me. First, my doctor (a GP) told me that I tested positive for Babesia, but negative for Lyme. Could this be accurate? They sent me for an MRI the other day which showed lesions on the white matter of my brain. My doc and the neurologist reading the scan said they could not rule out MS, but it was not indicative of MS? More likely from migraines, vascular diseases or spirochetal diseases. Could the Babesia have caused these? My main symptoms now are fatigue and overall body twitching. I read that the twitching is a symptom of Lyme, but I don't see it listed anywhere for Babesia. I was running a fever yesterday and had one several weeks ago. Lastly, the doctor put me on a several week dose of Doxcyclene 100 mg. Will this be enough and should I see a specialist? I know this is allot, but I would greatly appreciate any info you can give.
Posted by painted turtle (Member # 7801) on :
tonysgirl,
I think you should get a second opinion.
I'm not a doctor but since babesia is a parasite it is treated with antimalarial drugs like
Mepron.... which in my case was combined with zithromax...
for 4 months
but I had/have definitive lyme.
Posted by Michelle M (Member # 7200) on :
Hi Tonysgirl.
It's POSSIBLE to have babesia without lyme, but not real likely.
Are they basing your "no lyme" diagnosis on an ELISA test? If so, that test is a joke and misses around 50% (conservatively) of people with lyme.
You really should try and find an LLMD (lyme literate medical doctor).
Testing should include a western blot (NOT an ELISA) from a really good lab such as IGeneX - otherwise, you won't have a complete picture of your antibody status. Lesser labs do not even test all the bands - omitting two of the most specific bands completely.
Many of us on here have brain lesions. Me, too. In and of themselves they're not diagnostic for lyme because as noted, they can be from other causes. However, MS lesions TEND to present elsewhere in the brain.
Before your docs talk you into a lot of invasive testing (i.e., a spinal tap), I'd ask for an IGeneX western blot.
The dose of antibiotics is too small to be effective -- 400 mg a day is more like it. And in any event I don't know why they're giving you THAT if they don't think you have lyme. It's not enough to kill lyme and it won't even PERTURB babesia, which is a parasitic organism that isn't affected by antibiotics.
Immerse yourself in the newby links and find an LLMD .. lyme + babesia can last a LONG time and you really need a specialist to fight back!
Hope you are feeling better soon.
Michelle
Posted by Oz (Member # 2905) on :
It's not enough. Trust me. LLMD ASAP.
Posted by Beverly (Member # 1271) on :
Hi tonysgirl,
If you have Babesia you need to treat it and find a LLMD as was suggested above. I didn't get better until I treated my Babesia.
Here is a symptom list for Babesia, hope it helps.
Babesiosis symptoms include:
Fatigue * Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia***
Hope you feel better soon. Posted by sixgoofykids (Member # 11141) on :
Everyone's giving great advice, as usual.
You need to see an LLMD ASAP. I have Lyme and babesia and take Mepron, Biaxin, Doxy (400mg per day) and Artemisia. It takes someone who really knows what they're doing to fight the babesia, and I don't think your doctor knows what he's doing since Doxy won't affect babs.
I'm with everyone else ... you probably have Lyme, too. If you did have the Western Blot and your doctor required the CDC criteria for diagnosing you, that may be why he thinks you're negative. LLMD's use a different criteria.
Posted by tonysgirl (Member # 11202) on :
I need some help finding a doctor here in CT. I posted on the referral section, so hopefully I can get some insight. I still have yet to read about anyone having the muscle twitching with Babesia. The fatigue and the twitching are my main symptoms. I wonder if I really am positive for Lyme as well. This is really scary..... It really stinks when everyone you speak with hasn't even heard of Babesia. It doesn't give you a great feeling that you will ever get rid of this. I am a little upset because my regular doctor still hasn't called me since yesterday regarding these positive results. Could I have had a false positive?
Posted by cactus (Member # 7347) on :
A false negative is much more likely than a false positive. In my book, where there is one tick borne disease, there are probably more.
Your story sounds so familiar to me - my babesia was also first diagnosed by a GP, who didn't have a clue how to treat it. My Lyme tests all came back negative. She put me on 100 mg doxy as well! I steadily declined for months, even knowing about the babesia.
That is not a high enough dose to treat Lyme, if you do have it, and it is not an appropriate treatment for babesia at all. Babesia treatment is more similar to treatments for malaria.
It's likely that you could have other co-infections as well, so finding an LLMD would help you identify those and get proper treatment.
In my case, it turned out I did have Lyme & all common co-infections, plus some rather strange ones, to boot. My GP didn't have a clue how to handle my case, and nearly killed me in the process of trying to figure out what to do. Finding an LLMD saved my life.
Tonysgirl, please do find an LLMD - get yourself onto a waiting list if you have to, and start reading & hopefully getting some treatment from your GP while you wait.
The LLMD will be able to help you determine which tests you need, find a more appropriate treatment for the babesia, and get you started on a path to feeling better.
Oh, and I did have muscle twitching as well as brain lesions (plus a variety of other symptoms) - not sure which infection caused the muscle twitching specifically.
Warm regards, Cactus
Posted by tabbytamer (Member # 3159) on :
quote:Originally posted by tonysgirl: My doc and the neurologist reading the scan said they could not rule out MS, but it was not indicative of MS? More likely from migraines, vascular diseases or spirochetal diseases.
Lyme is a spirochetal disease (spirochete).
If you only became exposed/ill a couple of months ago with this (assuming it is Lyme/Babesia) you have an excellent chance of complete recovery if you get to a knowledgeable LLMD soon .
Please don't delay. Many of us went years without a proper diagnosis which has left us with persisting problems. If you treat this stuff appropriately, right from the beginning, you have the best chance of getting well!
Posted by valymemom (Member # 7076) on :
Travel to whichever llmd you can see first (either in-state or out of state.) Maybe you have a really good "my own doctor" who would be willing to treat you according to Dr. Burrascano's guidelines until you have an appointment with an llmd.
If you have been reading this support site - you know how important it is to be properly treated by a physician who knows these infections.
Posted by WildCondor (Member # 434) on :
You can easily have Lyme plus babesia, the tests are not very accurate. Doxycycline does not treat babesia, and at 100 mg will not treat Lyme either. The Doxy dose for Lyme is at minimum 300 mg per day, and usually higher than that. Babesia can require a combination of antimalaria, antibiotic, and herbal treatment.
I suggest you seek out a good LLMD and do not rely on a GP. I had white matter lesions on my brain too, the neurologists said I had MS, and it couldn't be Lyme. They were wrong! Let us know if we can help you find a doctor!
Posted by WildCondor (Member # 434) on :
Tonysgirl, there is no way to contact you if you have no email address or private message option on your profile, and we cannot post doctors names and contact information on this board. Email me at [email protected], I'll help you with the LLMD. Posted by Lymetoo (Member # 743) on :
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
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