Jump to content
ACN Latitudes Forums

Anyone's child tested positive for Bartonella?


Recommended Posts

lyme mom,

 

Interesting to hear about the EMF's. Fungus loves EMF's too, by the way. I get bad headaches and inability to concentrate and remember when exposed to the EMF's. I have treated for fungus and enormous improvement in a lot of symptoms, but no improvement in sensitivity to the EMF's. My worst problem these days are the wireless devices. Besides the cellphones, the wireless networks are starting to show up everywhere these days. Just recently was in Cedar Key for what turned out to be a one-day trip, literally could not find a hotel without a wireless network. Even the very small rinky dink cottages had them! Dr.K. is believes my PANDAS problem comes from mycoplasma pneumonia, and we are about to try clarithromycin for it. If that doesn't pan out, maybe I'll look at the lyme. It does seem the EMF's bother me more than most PANDAS patients. (Either that, or, they are kids and the parents haven't noticed the correlation, which is going to get harder to notice as the wireless devices spread further.) Fluorescent lights used to be my worst problem, and they are still just as bad, except that wireless usage has grown to be more of a problem.

 

Have you ever noticed how the wireless affects your son?

 

Michael

 

Michael,

My doctor told me the same thing about mold and high emfs. I have not noticed that wireless bothers my son but I am in the process of changing the way we use the internet so I can turn off my wireless router. We have cat 5 wiring we can use to go online. I am mainly concerned with having all this stuff off at night when he is sleeping. I also turned off our wireless phone at home and got a 900 megahurz model that is apparently much safer. I figured its worth a try b/c my son seems to be doing so much better sleeping in a lower emf location. Have you tested your bed where you sleep? I was told Radio Shack has a multi meter (811-32) that can be used to test emfs. I spoke to a consultant based in the midwest who will come analyze your house for this type of invisible pollution.

Headaches, inability to focus and remember and sensitivity to fluorescent lights can be lyme symptoms too. The lights really bothered me too when I was sick with lyme. Its possible that you are getting those symptoms around high emfs b/c the lyme spirochetes are multiplying. I read that a large subset of lyme patients have mycoplasma P too. Several of my kids were IGG positive for it. I think the lyme drugs kill mycoplasma p. Have you never been tested for lyme? Lyme should be at the top of every doctor's list when these kind of symptoms arise. It is just so widespread these days. You could have your doctor run a cd57 test (by labcorp) too b/c you are an adult. If your score is depressed it indicates an active lyme infection. Insurance covers this test. If you want to get a lyme test that is covered by insurance the best one (instead of using a lab like igenex, which is the best test) is the Labcorp Serum Western blot according to my doctor. I know people who got positive results using that test and did not need to pay to get the igenex test. Do not get an Elisa alone or a Western blot reflux. They are wrong about 40 percent of the time.

Good luck!

lyme mom

Link to comment
Share on other sites

  • Replies 42
  • Created
  • Last Reply

Top Posters In This Topic

lyme mom,

would you know off hand? our testing said "lyme antibodies" and then antibodies for ehrlechia and babesia. and then underneath, Western Blot? is that the one you are mentioning that is an okay test besides the Igenex? this is at Labcorp? we didn't get results yet.

 

Michael, yea, I was thinking the same thing as lyme mom about your symptoms and lyme connection. ever been tested?

 

thanks

Faith

Link to comment
Share on other sites

Lyme Mom,

 

Thanks for all your posts on this topic! Our tests were run at IGeneX in Palo Alto, so I guess that's good. The doctor is first and foremost a DAN doc, but he gave me an ILADS brochure about Lyme, so I know he's aware of them and possibly following their protocols.

 

I have a few questions for you:

 

- Is your son 100% better and you're just doing the last two months of treatment to make sure you got it all?

- Is there always a rash with Bartonella? My son has never had any type of rash.

- Can Bartonella actually be caused by a cat scratch? I was scratched and bitten by a cat before I got pregnant. Could I have given Bartonella to my ds in utero? I have had health problems including mercury poisoning, which were treated by this doctor - he has believed for a while that I may have Lyme, but all tests were negative and my health improved dramatically with chelation, so we didn't go through with Lyme treatment.

- How soon did you see the Lyme/Bartonella treatment working? How long was he worse (Herxheimer reaction)?

 

Thanks again!

 

 

Azithromycin doesn't seem to be helping my son, and IVIG was only minimally effective on the first try. Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. A while back our DAN doc tested our ds for Lyme and it was neg, but he was positive for Bartonella, a Lyme co-infection. We have never seen a tick on him and have never seen a bulls-eye rash, so we have not switched to the antibiotics that treat Bartonella yet. But since Azith isn't having an impact that I've seen, maybe we should. Any thoughts?

 

Bartonella is a serious tick borne illness (AKA cat scratch disease) and it can make you very ill. It can cause OCD and other neurological problems according the world's top lyme pediatrician, Dr. Charles Ray Jones (New Haven,CN). He may still have lyme in spite of the negative test. Igenex Labs in Calif offers the best lyme western blot but there are many fals negatives. I would get him treated asap by a knowledgeable lyme physician who is ilads-trained (ilads.org). My son has lyme and Bartonella and he had Bells Palsy. We are seeing Dr. Jones and Dr. Beals who works in DC and in MD. WHen you treat Bartonella or lyme you can get exacerbated symptoms from the toxins that are released when you kill the bacteria. My son is going through this now (headaches, leg pain, chest pain, etc.) He finally got a Bartonella rash last week, 18 months into his lyme treatment! This can happen when you are killing the bacteria.

 

Hi everybody,

 

I have gotten so many inquiries on-line and off-line about Lyme Disease that I am pasting some important information below about the symptoms of Lyme Disease. The first blurb is from Dr. Jones, the top Lyme Pediatrician in the world who treated the first children who developed Lyme in Lyme, CN. Next I have pasted the symptoms from the Ilads.org website and lastly I have listed the tests that need to be run for lyme and associated diseases. There is a link at the bottom which will bring you to a very complete overview of Lyme and how to treat it by a top Lyme doctor.

 

Lyme Mom

 

Pediatric Overview: The Children of Lyme Disease

Charles Ray Jones, MD

Pediatrician, Private Practice, New Haven, CT

Current research indicates that the Lyme disease bacteria, Borrelia burgdorferi, can be transmitted within hours after an infected tick attachment. Failure of parents and teachers to recognize Lyme disease early in its course can result in a child developing a chronic difficult to treat infection in the brain, eyes, joints, heart and elsewhere in the body. In my experience treating 5,000+ children birth to18 with Lyme disease, 50% have no tick attachment history, 10% or less have an erythema migrans (bullseye rash) history, but all have a history of living in or having visited a Lyme endemic area and have a decline in the way they play and perform in school. They are tired, wilt easily, have dark circles under their eyes and are sick.

Lyme disease has a profound negative impact on a child’s life, cognitive function and ability to perform maximally in school. Severe fatigue unrelieved by rest results in decreased stamina and a decreased ability to play and to do school work. Insomnia, headaches, nausea, abdominal pain, impaired concentration, poor short-term memory, an inability to sustain attention, confusion, uncharacteristic behavior outbursts and mood swings, fevers/chills, joint pain, dizziness, noise and light sensitivity, and difficulty thinking, expressing thoughts, reading, writing, and making decisions as well as a feeling of being overwhelmed by schoolwork plague a child with Lyme disease. Pain and impaired cognitive function make it difficult to sustain attention and to learn and recall new material.

Although Lyme is usually transmitted by Ixodes scapularis (deer) and Lyme-like STARI (Southern tick-associated rash illness) by Amblyomma americanum (lone star) ticks, it can also be transmitted in utero and through breast milk. These children, frequently floppy with poor muscle tone, are irritable and ill early in their lives with frequent fevers, increased incidence of ear and throat infections, pneumonia, joint and body pain. They have gastroesophageal reflux, small windpipes (tracheomalacia), cataracts and other eye problems, developmental delay, learning disabilities, and psychiatric problems. All respond to months or years of continuous antibiotic therapy.

When Lyme disease is a possible diagnosis, the children should be evaluated by a Lyme knowledgeable physician who will continue antibiotic therapy until all Lyme symptoms resolve. In most circumstances, Ixodes scapularis tick attachment should be treated with one month of antibiotic therapy.

 

Lyme Symptom Checklist from Ilads.org:

 

Persistent swollen glands Sore throat Fevers Sore soles, esp. in the AM Joint pain

Fingers, toes Ankles, wrists Knees, elbows Hips, shoulders

Joint swelling Fingers, toes

Ankles, wrists Knees, elbows Hips, shoulders

Unexplained back pain Stiffness of the joints or back Muscle pain or cramps Obvious muscle weakness Twitching of the face or other muscles Confusion, difficulty thinking Difficulty with concentration, reading, problem absorbing new information Word search, name block Forgetfulness, poor short term memory, poor attention Disorientation: getting lost, going to wrong places Speech errors- wrong word, misspeaking Mood swings, irritability, depression Anxiety, panic attacks Psychosis (hallucinations, delusions, paranoia, bipolar) Tremor Seizures Headache Light sensitivity Sound sensitivity

Vision: double, blurry, floaters Ear pain

Hearing: buzzing, ringing, decreased hearing Increased motion sickness, vertigo, spinning

Off balance, “tippy” feeling Lightheadedness, wooziness, unavoidable need to sit or lie Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity

Facial paralysis-Bell's Palsy Dental pain Neck creaks and cracks, stiffness, neck pain

Fatigue, tired, poor stamina Insomnia, fractionated sleep, early awakening Excessive night time sleep Napping during the day Unexplained weight gain Unexplained weight loss Unexplained hair loss

Pain in genital area Unexplained menstrual irregularity Unexplained milk production; breast pain

Irritable bladder or bladder dysfunction Erectile dysfunction Loss of libido

Queasy stomach or nausea Heartburn, stomach pain Constipation Diarrhea

Low abdominal pain, cramps Heart murmur or valve prolapse? Heart palpitations or skips

“Heart block” on EKG Chest wall pain or ribs sore Head congestion Breathlessness, “air hunger”, unexplained chronic cough Night sweats

Exaggerated symptoms or worse hangover from alcohol

 

Testing for Lyme and Coinfections

 

The best test for lyme that is covered by insurance is the Labcorp Serum Western blot. The best tests for lyme are done by Igenex Labs in CA or Clongen Labs in Gaithersburg, MD. The igg and igm Western blots cost about $200. Neither Igenex nor Clongen take insurance.

 

Other tests that lyme specialists run are for Babesia Duncani, Babesia Microti, Bartonella Henselae, Mycoplasma P., and Erlichia. None of these tests are completely reliable so diagnosis is based on symptoms. For more info go to http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf. This is a link to a comprehensive paper about Lyme and how to treat it by one of the leading lyme physicians in the country, Dr. Joseph Burrascano.

Link to comment
Share on other sites

lyme mom,

would you know off hand? our testing said "lyme antibodies" and then antibodies for ehrlechia and babesia. and then underneath, Western Blot? is that the one you are mentioning that is an okay test besides the Igenex? this is at Labcorp? we didn't get results yet.

 

Michael, yea, I was thinking the same thing as lyme mom about your symptoms and lyme connection. ever been tested?

 

thanks

Faith

Hi Faith,

 

I never used Labcorp so I don't have one to look at but I do know it is called a serum western blot, not a western blot reflux. It should list all the lyme antibodies and give a result for each that is either present or not present. Certain antibodies are more important than others (they only appear when exposed to lyme). Labcorp's test will not include results for bands 31 and 34 but igenex' test will.

Dr Joseph Burrascano gives you a complete guide to lyme and the infections on the ilads webite. I am pasting an excerpt below regarding the tests and which antibodies are lyme-specific and how to know if you are positive.

 

"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp :wacko:, 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic."

 

He also says that if you have had it a long time you may have stopped producing antibodies. Many patients turn positive after treatment he says.

 

"An unfortunate corollary is that serologic tests can become less sensitive as the infections progress, obviously because of the decreased immune response upon which these tests are based. In addition, immune complexes form, trapping Bb antibodies. These complexed antibodies are not detected by serologic testing.

Not surprisingly the seronegative patient will convert to seropositive 36% of the time after antibiotic treatment has begun and a recovery is underway. Similarly, the antibody titer may rise, and the number of bands on the western blot may increase as treatment progresses and the patient recovers. Only years after a successfully treated infection will the serologic response begin to diminish.

The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery. More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intra- articular steroids."

 

lyme mom

Link to comment
Share on other sites

lyme mom & faith -- No, I have never had any testing for lyme.

 

I have my local MD appointment tomorrow where he will be prescribing the clarithromycin (biaxin) for the mycoplasma pneumonia PANDAS (per Dr. K.'s recommendation). At this point, it looks worthwhile to get whatever lyme test would make sense--before taking any of the clarithromycin. Given what I have read above--that long-term, the lyme blood tests can show no antibodies because your body stops making them, and then after treatment, it comes back--it seems like showing low lyme antibodies, then taking clarithromycin, and showing high lyme antibodies later, that might be pretty indicative of a real situation to deal with (if it goes that way). Insurance coverage is nice, but I can afford to pay for the better ones if it's worthwhile, and sounds like it is. Any recommendations? Which or how many to do? Good ones and not-as-good ones? I'll go back on the web and see what I can find, but I'm also wondering, anything to take in conjunction with the clarithromycin? I remember from yesterday's reading that in some situations some combinations are used. If it's not too crazy (weighing risk-reward), my local MD has an aggressive let's-go-get-it style, and might think it makes sense to add something in, just in case.

 

Michael

Link to comment
Share on other sites

Just want to add a few things:

 

- Thanks so much to lyme mom for appearing and giving this information. It might be very timely for me, and with so many overlapping symptoms with PANDAS, seems like good general information for many of us to be aware of and look into.

 

- Not sure if mentioned already in this thread, but for lyme, they seriously recommend against steroids unless absolutely necessary, to avoid permanent damage. So, it is worth seriously considering trying to rule out lyme before using steroids as a diagnostic for PANDAS. I know, after reading that, that's the direction I'll take if the antibiotics Dr. K. recommends don't pan out.

 

- By the way, I did have lyme testing with labcorp recently, just forgot it was there. It was ELISA, it was negative, and according to lyme mom and the pdf attachment she provided in post 34 of this thread, does not rule out lyme. The attachment has a lot of detailed and basic information, appears to be very well-written, and looks like an excellent source of information.

 

Michael

Link to comment
Share on other sites

Just want to add a few things:

 

- Thanks so much to lyme mom for appearing and giving this information. It might be very timely for me, and with so many overlapping symptoms with PANDAS, seems like good general information for many of us to be aware of and look into.

 

- Not sure if mentioned already in this thread, but for lyme, they seriously recommend against steroids unless absolutely necessary, to avoid permanent damage. So, it is worth seriously considering trying to rule out lyme before using steroids as a diagnostic for PANDAS. I know, after reading that, that's the direction I'll take if the antibiotics Dr. K. recommends don't pan out.

 

- By the way, I did have lyme testing with labcorp recently, just forgot it was there. It was ELISA, it was negative, and according to lyme mom and the pdf attachment she provided in post 34 of this thread, does not rule out lyme. The attachment has a lot of detailed and basic information, appears to be very well-written, and looks like an excellent source of information.

 

Michael

 

Michael,

 

Yes the ELISA was designed for cdc reporting and should not be used to diagnose LD. You have to be glowing with lyme to get a positive and by then it is a little late. I'd get the labcorp western blot serum test. If that doesn't show lyme antibodies have your doc order the igenex igg and igm western blots. There are several other tests they can run too which increase the sensitivity but it costs about 450 to do them all. Its 200 for the igg and igm tests which is what we did. My sister and my neighbor got a positive labcorp test and didn't need to do the igenex.

None of us have been given biaxin for lyme nor have any of the people I know. That doesn't mean it isn't used but there are specific antibiotics that are considered best for lyme. All I can tell you is that doxycyclene 400mg/day plus either azithromycin (500/day) or Ceftin (500mg twice a day) is what the adults I know are getting for lyme. If you have other tick illness like bartonella (which causes neurological problems, sore heels, calf pain i think) then you would also get rifampin. If you have babesia (fatigue, thigh cramps, nightsweats, chest pain, air hunger, sore ribs) you would also get Mepron or Bactrim. I am not a doctor though but this has been our experience.

 

Lyme Mom

Link to comment
Share on other sites

I should probably clarify that "cat scratch fever" (Bartonella Henselae) probably isn't the Bartonella that most of you are discussing. There are many many species of Bartonella.

 

Bartonella Henselae (cat scratch fever) is transmitted via cat scratches--and is transferred from cat to cat via FLEAS. http://emedicine.medscape.com/article/781320-overview

 

I am guesssing the Bartonella most of you mean to talk about when discussing lyme co-infections (and assuming there is no hx of cat scratches) are some of the other bartonella species which are transmitted via ticks. http://www.columbia-lyme.org/patients/tbd_bartonella.html

Link to comment
Share on other sites

lyme mom,

 

On the topic of measuring EMF's, yes, I have measured the bedroom. Our bedroom isn't too bad, but does have the EMF's where the wires travel inside the walls to the electrical outlets. My sleep did improve when we moved the bed so my head is much further away from those things. By the way, the company lessemf (website lessemf.com) has a wide range of meters to measure the full variety of EMF's out there. It is a very complicated topic with many things out there to consider and measure, and speaking with them on the phone before purchasing is very helpful. They also sell shielding products as well.

 

Michael

Link to comment
Share on other sites

lyme mom,

 

I looked at the ilads.org site, and didn't see information on how to locate an ilads-trained doctor in my area. Did I miss it? Or is there a better way to find one? Leaning toward just the labcorp tests for now, but was hoping to have information on the igenex tests available for my doctor, based on how our discussion goes. I saw some information on the igenex site, but it looks like I need a doctor who will draw the blood? My MD does not draw blood for tests, just something they don't do. Perhaps another reason to find an ilads-trained doctor in the first place (if pursuing the tests)?

 

Michael

Link to comment
Share on other sites

lyme mom,

 

I looked at the ilads.org site, and didn't see information on how to locate an ilads-trained doctor in my area. Did I miss it? Or is there a better way to find one? Leaning toward just the labcorp tests for now, but was hoping to have information on the igenex tests available for my doctor, based on how our discussion goes. I saw some information on the igenex site, but it looks like I need a doctor who will draw the blood? My MD does not draw blood for tests, just something they don't do. Perhaps another reason to find an ilads-trained doctor in the first place (if pursuing the tests)?

 

Michael

 

Hi Michael,

 

Just send Barbara an email and she will send you a name near your town. Your doctor needs to fill out the igenex form that you can download from their website. You can either do the complete lyme workup that cost 450 or so or just the igg and igm western blots which are tests 188 and 189. Your doctor can order blood to be drawn for the igenex test and give you the kit to take to labcorp or wherever you get blood drawn. Lyme docs do it in their office. My doc is in DC and MD and he is excellent. Dr. Paul Beals. He sees a lot of people long distance.

 

I saw him this morning and he told me that a lot of his pandas patients also have lyme disease. If a patient has both they use the lyme drugs along with the once monthly bicillin shots.

 

Lyme Mom

Link to comment
Share on other sites

lyme mom,

 

On the topic of measuring EMF's, yes, I have measured the bedroom. Our bedroom isn't too bad, but does have the EMF's where the wires travel inside the walls to the electrical outlets. My sleep did improve when we moved the bed so my head is much further away from those things. By the way, the company lessemf (website lessemf.com) has a wide range of meters to measure the full variety of EMF's out there. It is a very complicated topic with many things out there to consider and measure, and speaking with them on the phone before purchasing is very helpful. They also sell shielding products as well.

 

Michael

I heard about that company but haven't had time to research their website yet. I will look into it.

 

thanks,

lyme mom

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...