Hi everyone! I'm brand new here. I am in the process of finding out if my 14 y.o. son has Lyme disease. I have a couple general questions and would greatly appreciate any help from you experts out there.
1. If you are bitten by a tick and get the classic "bulls-eye" rash, does that mean you absolutely were infected with Lyme disease? (My son was bitten by two ticks and got the classic rash.)
2. Has anyone out there been diagnosed w/Babesiosis? If so, did you experience anemia? My son has been anemic for 10 months now and despite extensive testing, doctors cannot figure out why.
Thank you everyone! Maestro
Posted by timaca (Member # 6911) on :
Welcome Maestro~ How wonderful that you are seeking info to help your son.
The answer to your first question is YES.
Regarding the anemia....has your son been tested for tick borne diseases including Babesia? Some good labs for testing are:
It is suggested that one orders an IgG and IgM Western Blot test, at the very least. Ask the lab to report ALL bands. Ordering tests from more than one lab is also a good idea.
One thing that doctors seem to overlook with regard to anemia is stomach issues...malabsorption. Does your son have stomach pain, gas, loose stools? If so, then celiac disease is a possibility, and the malabsorption that comes from that often can cause anemia.
Good luck to you....there is lots to learn from this site.
Timaca
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by maestro: 1. If you are bitten by a tick and get the classic "bulls-eye" rash, does that mean you absolutely were infected with Lyme disease? (My son was bitten by two ticks and got the classic rash.)
YES! And don't let any other drs tell you it isn't!
Babesia...yep, I had it. Hard to get rid of ... especially when lyme is also present. Be sure to find a really good LLMD who is able to treat the two.
And yes, babs can cause anemia.
I'm so glad you have discovered what is wrong with your son. Now he can get well!!!
PS...LLMD= Lyme Literate MD
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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
The following signs/symptoms may be present in those infected with Babesiosis: 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* Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
hmmmm...strange that anemia is not on the list. Did I miss something there??
quote:Originally posted by timaca: One thing that doctors seem to overlook with regard to anemia is stomach issues...malabsorption. Does your son have stomach pain, gas, loose stools? If so, then celiac disease is a possibility, and the malabsorption that comes from that often can cause anemia.
Good point and I'm glad you brought that up. I have celiac disease, which I do believe was caused by Lyme.
Your son could have both.
Posted by Vermont_Lymie (Member # 9780) on :
Yes! A tick bite with the classic bulls-eye rash is diagnostic of lyme. I hope you get your son to a lyme literate doctor (llmd) right away! Do not delay.
I was recently diagnosed with babesia, and I used to be mildly anemic. Started taking a supplement with some iron in it and that was the end of the anemia.
Good luck and I hope your son starts treatment right away.
Posted by sixgoofykids (Member # 11141) on :
I have babs, too. I've been taking iron for YEARS and always test within range for anemia, but I'm supplementing iron daily.
I, too, am gluten intolerant, but not celiac. I did get some malabsorption problems from the gluten intolerance though. I also believe this was caused by Lyme.
Posted by CaliforniaLyme (Member # 7136) on :
1. YES!!!
2. a. YES!!! b. NO!!!
They are finding new strains of Babesia all the time- some cause anemia like Microti while WA1 tends NOT to!!! And if they are not testing for the strain he has he will test negative- with anemia I would guess if he has a TBD coinfection that he has Babesiosis- but I would definitely take him to a doc!!!
Bulls-eye rashes are DIAGNOSTIC. Some people test negative repeatedly on blood & spinals!!!
Your son does have Lyme, period, if he had abite and bulls-eye rash. Find him a good LLMD asap- Time matters!!! The quicker treated, the more likely a complete remission!!!!!!!! Best wishes, Sarah
Posted by maestro (Member # 11458) on :
Thank you everyone! I really appreciate the input! Yes, my family practitioner told me "just because he had a bulls-eye rash does NOT mean he's been infected w/Lyme disease." Also told me, "We just don't see Lyme around here." (We live near St. Louis, MO, but on the IL side of the river. He actually was bitten by ticks from our farm not far from Springfield, IL) Made me feel silly for pushing the matter....that was last summer. Now nearly a year of trying to figure out why he's anemic...even the specialists at Children's Hosp. Hematology can't figure out why.
I have made an appointment for my son with a supposed LLMD at Children's. I have been told to "move on" if I don't get the results I need. Just don't know if I'll know whether I have the results I need....know what I mean?
Thanks again everyone! maestro
Posted by KKYOUNG (Member # 10024) on :
I understand, getting the same static here in Indiana. I first noticed the bullseye bruise in May and doc said it was just "bruise". I have a whole list of the symptoms but no one will believe me except the podiatrist I went to for pain in my feet. Nope, ticks do not move, deer do not move, they stay up north and it just isn't in this area - gotta be something else - chronic fatigue maybe - or better yet, we will just walk out the door and not address any issues at all. Been to 5 docs and they say because my Elisa and WB were negative "I do not have it" -but they don't seem to care to find out what I do have or offer any alternative. SOOOOO FRUSTRATING. Doc who took my dopplar said it was from bug bite but apparently they do not believe he knows what he is doing either. Good luck to you - hope you have better luck finding an llmd than I am having. There are a lot of us in the same boat - trying to find help that knows what they are talking about. Im already sick of going to doctors who don't seem to know how to treat anything except a sore throat - maybe.
Posted by groovy2 (Member # 6304) on :
Hi ALL
Take pictures of the Bullseye if you can-
A Bullseye is as Sure as it gets--
Posted by sixgoofykids (Member # 11141) on :
Maestro, I believe there's an LLMD not too far from you in Missouri. I fly from Ohio to NY to get treated. It's not unusual to travel to see a doc who knows how to treat Lyme. I would be surprised if the doc at Children's is an LLMD ... I thought Dr. J in Conn. was the only pediatric LLMD.
There is even someone from the UK who sees my LLMD! KKYoung, I'm afraid you're in the same boat I am ... you will need to travel ... we don't have Lyme in Ohio either.
I would definately see an LLMD. For other illnesses you would go to a specialist ... I'd do it with this, too. Don't mess around with docs who don't understand it.
Posted by maestro (Member # 11458) on :
Yes, Groovy2, thankfully I did have the presence of mind at the time to take pictures of the bite bulls-eye. I will take them with me to my son's appointment.
Sixgoofykids, I believe I know the dr. of whom you are referring to in MO. He is nearly 5 hours from us in Springfield, MO, though (I have heard he's very good). This doc in St. Louis was recommended to me from someone who runs a Lyme support group in MO. When I search online with his name and Lyme disease, many hits come up....hoping this is good.... That said, we are prepared to travel if necessary... I understand your point!
Am I correct in guessing we are not supposed to mention doctor's names here?
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