rowingmom

Yay! Good for you! Got to just love those Big Discoveries ! Thank you for passing on the information.

Sorry, but an x-ray won't tell you the cause of pneumonia. Mycoplasma is not necessarily only a pulmonary infection.

Exemption was easy for us as well. This was DD's year for meningitis and HepB. Hope I made the right decision.

We tried samento/banderol 6 months into treatment with biaxin/rifampin. The LLMD wanted to treat lyme with herbs but keep rifampin going for bartonella. This was unsuccessful and DD had completely relapsed by the next appointment 1 month later. Perhaps, with a lower bacterial load, it may help to keep the infection in check if needs be, but I agree with Mary wag. I wouldn't necessarily treat an infection that the immune system is now capable of holding in remission. The current thought in the lyme community is that these infections can't be eradicated, only held in check, like chicken pox/shingles, by a properly functiomimg immune system. I wouldn't use abx unless you really need them.

If infection is still active, IVIG does nothing to reduce bacterial load. Both the IVIG and steroids will temporarily reduce inflammation and antibody concentration (thus reducing symptoms), but are not a permanent fix. Steroids may actually facilitate bacterial growth because of it's supression of the immune system. The bacterial infections have to be properly addressed.

Successful treatment of bartonella-induced PANS with antibiotics has resolved our daughter's motor/vocal ticcing. Her ticcing waxed and waned throughout her treatment, increasing with newly introduced antibiotic protocols (more bacterial die-off) and waning as her body was allowed to detox from the increased load of die-off toxins. These toxins are produced by the endotoxins released when gram negative bacteria are killed; bartonella being the gram negative bacteria our daughter was being treated for. I saw a definate correlation with the amount of toxins being produced and motor/vocal ticcing. These die-off toxins may be produced either by abx treatment, or by the immune system itself. Our most extreme ticcing reactions were produced by tindamax and GSE (grapefruitseed extract).

I am PMing you.

Thank you. It's been a while since I've been on the progesterone research path. Great refresher.

Lyme and coinfections can cause PANS reactions. These are like PANDAS, only caused by an infection other than strep. LLMDs are used to dealing with not only lyme, but the multiple coinfections that often piggyback with it - bartonella, babesia, ehrlichia, RMSF, mycoplasma, etc.

Sorry about this ( I can't help myself ) but I came across this blog post the other day, and your mention of polymyositis, brought it to mind, PowPow. http://lymemd.blogspot.ca/2013/09/primary-lyme-myositis.html "Results of tests: thyroid functions normal; rheumatoid factor and CCP antibodies negative; ANA elevated titer 1:160, speckled pattern; RNP antibodies, Smith antibodies, Antiscleroderma-70 antibodies, Sjogren's SSA and SSB negative, Antichromatin antibodies negative, Anti-Jo antibodies negative, Anti-Centromere B antibodies, ANA-D negative, dsDNA negative, Chromatin negative, SSA, scl-7 9 antiDNA topoisomerase negative, Centromere B negative, Jo-1 and nRNP negative, HLA B27 negative, RPR negative, Vitamin D normal, CK normal, Aldolase elevated (normal up to 7.6, result 13.8, CRP elevated 29.9. I apologize for some tests I omitted. A test for Lyme disease showed an ELISA greater than 5, 10/10 IgG bands reactive and 2/3 IgM bands reactive. A diagnosis of Lyme disease was made and the patient was treated with a three week course of doxycycline, 100 mg twice daily for 21 days. This was not helpful...... The patient was seen by me 5 months ago, after more than one year of diagnosis and treatment from a major University setting, without benefit. Further laboratory testing per me was remarkable for a C6 peptide greater than the assay is able to measure. I diagnosed primary Lyme myositis, a relatively rare condition in my experience. Moderately aggressive therapy was initialed with a combination of oral antibiotics. After 8 weeks the patient was feeling much improved. The pain and swelling were gone. Fatigue was minimal and he complained only of mild stiffness. After 8 weeks, aldolase ( a muscle enzyme) was in the normal range, 4.8. The CK remained normal. The ANA was entirely negative, slightly elevated before. The CRP was reduced from about 30 to 3.25(almost normal)....." And finally, tongue in cheek: " Note: A group of rheumatologists did an exhaustive workup covering the academic waterfront for every known rheumatologic disease. The pathology report supported this approach. The patient had been appropriately treated for Lyme disease according to the IDSA guidelines adopted by the American Rheumatological Societies. Therefore, although the diagnosis was not clear and the patient had not responded to appropriate therapy; it was clear the answer was not chronic Lyme disease; a disease which does not exist as supported by experts in the fields of rheumatology, neurology, infectious diseases and evidenced based medicine based on peer reviewed studies published in the most prestigious journals." Our LLMD suggests that DD's positive ANA speckled pattern "associated with mixed connective tissue disorder" is the result of her lyme infection and the affinity of borrelia for connective tissue.

In the papers you have read, have symptoms resolved and stayed that way, or do they eventually return?

It sounds like your son is in good hands. Wishing you the best.

We were also symptom/tic-free during fevers, all of which would return shortly thereafter. DD never did have much in the way of OCD. Ticcing for DD was an indication to me that she needed to detox - get rid of die-off toxins. We saw increased ticcing with changes in abx protocols - more ticcing for the harder abx, especially tindamax, but they resolved slowly as her body delt with the overload. We also had a dx of Tourettes and klonopin was rxed by both our PCP and Ped Psychologist. I declined. I have kept in touch with the ped psychologist because she was the first to mention "perhaps PANDAS" to me, but then in the second breath said it couldn't be treated in Canada. So she then suggested Tourette's treatment. I have been sending her PANS research papers which she has been passing on to PCPs/peds who ask her about the possibility of this type of reaction. I have also been giving her updates on DD, and because DD has been doing so well since completing lyme/bart treatment, she requested we come in for a reassessment. She was amazed at DDs improvement and said she had been lobbying the Ontario College of Physician to look into PANS more deeply. They have brushed her off. She also works closely with Bethesda, so understands the PANDAS work being done there, but she wasn't really aware that similar reactions could be caused by bartonella. She told me I was the most informed lay-person she had come across, when it came to PANS/PANDAS. I responded "You should meet some of the parents on the ACN forum ". She has absolutely no problem with me researching the internet. I love her!

Sorry, we use liposomal glutathione, 250mg BID. DD does have issues with sulpha abx, but not with this amount of glutathione. Seems like I read in one of the posts a while ago that intolerance of sulpha drugs is not a real indication of sulpher intolerance, or vice versa.

We should all be able to get high paying jobs in forensic pathology

Good for you kc35. Any child with cough and fever needs to be further assessed for infection. Babesia can cause chronic cough.

Anti-inflammatories.

Glad your Dr is still optimistic. This is a great group. We learn so much from each other .

You are probably aware of this thread already, but these folks may have some input on your specific protocol. http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=122300;p=19

Thanks for the heads up!

Yay! Wonderful news. It's so good when our kids are more able to function on their own.

Thanks PowPow and dcmom for your input. I know it's important for me to keep an open mind, and you along with TAnna, are doing just that

Did you see much improvement after the first round?

Thanks.

I will be interested in the treatment you receive for autoimmune encephalitis and whether you find an exacerbation of bacterial infections with the use of immune suppressing medications. Our daughter does have a positive ANA (speckled type) which indicates autoimmune reaction. Her lupus tests were negative. So I know there is an autoimmune component, which our LLMD says is related to the presence of borrelia. Her encephalitis symptoms resolved with bartonella treatment. From http://www.medicinenet.com/encephalitis_and_meningitis/page2.htm#what_are_encephalitis_symptoms_and_signs What is encephalitis? Encephalitis is brain inflammation. There are many types of encephalitis, most of which are caused by infections. Most often these infections are caused by viruses. In addition to infections, encephalitis can also be caused by certain diseases that result in an inflammation of the brain. What causes encephalitis? Encephalitis is a rare condition that is caused most often by viruses. The leading cause of severe encephalitis is the herpes simplex virus. The very young and the elderly are more likely to have a severe case. Exposure to viruses can occur through breathing in respiratory droplets from infected people, certain insect bites, and direct skin contact. The signs and symptoms of encephalitis can range from very mild symptoms to potentially life threatening. Signs and symptoms of encephalitis include sudden fever, headache, vomiting, visual sensitivity to light, stiff neck and back, confusion, drowsiness, unsteady gait, and irritability. Loss of consciousness, poor responsiveness, seizures, muscle weakness, sudden severe dementia, and memory loss can also be found in patients with encephalitis. I'm not trying to pick an arguement here, but do I understand that your neurologist thinks the encephalitius is not infection-based, but instead caused by another unrelated autoimmune reaction? And that the infections can be ignored and the autoimmune reaction treated as existing in a vaccuum, or are you treating with abx along with steroids/pex? I know others here have healed solely by treating the autoimmune component. This treatment is unfortunately unavailable to us being out of country and paying out of pocket. When we started out with this mess, I would have done IVIG, etc. if it had been available, but it wasn't, so we ended up going down the infection path. We are all trying so hard to help our children.