Orion

DAN = Defeat Autism Now LLMD = Lyme Literate Medical Doctor; basically a Dr. who disagrees with the IDSA (Infectious Disease Society of America) position on Lyme Disease and the treatment thereof. They are more apt to follow ILADS (International Lyme and Associated Disease Society) protocol realizing that Lyme Disease is not hard to catch and not always easy to cure. Their practice is generally geared to treating mainly Lyme disease and co-infections (Babesiosis, Ehrlichiosis, Bartonella, etc.

removed duplicate post.

Most LLMD's prescribe Actigall, generic name is Ursodiol, to help protect the gallbladder while their patients are on Rocephin. I would definitely ask your doctor about it. Having said this, Dr. Burrascano had some of the removed gallbladders biopsied, and did find that they were loaded with Borellia burgdorferi to begin with.

I agree, and when working with a team of doctors, this is very important. In our case we have a PCP who helps with the insurance issues, the primary LLMD, neurologist, endocrinologist and opthamologist. All are Lyme literate (Lyme is the underlying reason for the PANS diagnosis), but look at the same test results, even the basic CBC, from different lenses. No matter who we are visiting, we provide them with their own copies of the latest test results and complete medication list. This can get confusing as to who needs what test results, and can take a good bit of organization! Some of the doctors are more prone to commenting and give their suggestions on how to tweak things. Others wait to be asked for their thoughts (especially if there seems to be a potential conflict of opinions.) It is nice to have imput from a different perspective.

PM sent. When DD's doctor's haven't agreed, then you have a decision to make as to which protocol to follow. You know your child the best, you need to weigh the pros and cons, then decide what makes the most sense, or which treatment feels the most right. The doctors we have been dealing with, have been most professional and have accepted our decisions. [caveat: Except for once, when DD's PCP screamed at DD when she had a convulsing episode and pretty much fired her as a patient. Turns out the PCP believed she was faking them. It wasn't til after he fired DD that he contacted her neurologist whom I know set him straight in a hurry! The point of this is that if the doctor's don't agree, then their true colors may come out, and you are better off knowing that.]

Our neurologist feels that NAC can affect biofilms (at least for Strep and Mycoplasma pneumoniae). So this could be part of a herx reaction?

Pure speculation on my part, but my daughter's movement disorder (PANS- she's positive for Lyme, Myco.Pn, strep and other pathogens) worsens just before her period, so I am guessing they are looking for low levels? One LLMD said "when estrogen levels are low, the germs come out to play". I hope someone here has a more scientific answer to this question.

We even needed to keep a tube of sunscreen for use in the car, even during the winter.

Document everything! Make sure you take some pictures of the rash - incuding dates. You never know when the pictures will come in handy.

Tindamax is supposedly better tolerated than Flagyl. DD is on the same protocol- 2 days on 5 days off. She hasn't experienced anything bad- maybe a tad more symptomatic for 2 days afterwards, that is about it.

What?? The office has moved?? PM sent.

In my DD's case (Lyme, M.pneumoniae) the results were high across the board- especially the anti-lysogangliosides.

In my DD's case (Lyme, M.pneumoniae) the results were high across the board- especially the anti-lysogangliosides.

When DD had her first major relapse- 3 yrs after the EM rash was misdiagnosed and (inadequte) initial treatment delayed- her first symptom was repeating words in the middle of a sentence. (For example:"The dog food food food is in the dish.") She had no inkling she was doing it. And it only happened every few days. Luckily it wasn't just me that picked up on it. A short while later she had an atypical 'flu', a strange stretch-mark like rash on her back appeared (later Dx'd as a bartonella rash), then a whole host of neurological ailments slowly started up. The PANS/PITAND movement disorder didn't start until a third relapse 2 years later.

My DD has a Dr. appt. on Friday, and I'll miss the topic I am most interested in: 12:00pm-1:30pm New Research on Lipid Replacement Therapy to improve mitochondrial and membrane function in complex infections — Garth Nicolson, PhD If someone could take a few notes for me, I'd appreciate it -Orion

Yes, our HMO paid for the Cytochrome P450 testing. DD does not have the HLA DR4 genotype. I will PM you, philamom, so this thread remains on topic.

Just want to add that if you have a 'cafeteria'/medical flex plan where you can elect to have X amount of money set aside pre-tax for medical expenses, you can not include those again as an exemption on your taxes. I have separate envelopes set aside for receipts: 1 for things I paid through the medical flex account, and 1 for medical expenses I paid with after-tax dollars.

She is currently 20...EM rash and initial misdiagnosis, then weak initial treatment, happened when she was 11. The IVIg is most definitely helping with the movement disturbance- its down from multiple SC-like and/or paroxysmal dyskinesia episodes a day to just 1 or 2 a month. Dysautonomia is improved as are the food allergies. Other than that, it is tough to tell what treatment (auto-immune, Lyme, Babesia, Bartonella) is helping what. Fatigue is still a major issue, and seems to be worsening (Her mycoplasma titers, IgM and IgG have been high for the past 6 months.) While anxiety and paranoia are still an issue, that has been cut in half. Executive functioning and auditory processing issues are much improved, but not enough to allow her to resume classes. From my point of view, each little thing that is being done helps in its own way. Her initial Cunningham tests were very high (esp. antilysogangliosides). We were hoping to have them repeated after being on IVIg for a year, but that blood sample is currently in limbo.

I just read this thread as well. DD has PITAND due to Lyme. She also has multiple co-infections, and tests high for M. Pneumoniae as well as various strep titers.(Her LLMD said she could be classified as PANDAS as well.) So it is anyone’s guess if one or multiple factors are causing her movement disorder and auto-immune problems. Early on, before we realized that she was suffering a Lyme relapse, her pediatrician tried several SSRi’s. Unfortunately even the‘low’ starting doses were too high. Results were disastrous to say the least. Flash forward several years. Her current neurologist conducted genetic testing (via Genomas,Inc.) to see how her liver metabolizes drugs via the Cytochrome P450 enzyme pathways (CYP2C9, CYP2C19, CYP2D6). Mutations would effect how she metabolizes medications. (Unfortunately antibiotics weren’t included with the results.) Sure enough, DD had mutations for all 3 enzymes. Two mutations inhibit metabolism, allowing the drugs to build up in her body. Unfortunately for DD, this includes the majority of SSRI’s. No wonder even very small starter doses were too strong. Tpotter- The mutation involving the third enzyme induces metabolism, meaning the meds are pumped out as quickly as they are given. For DD, opiates are effected. Our neurologist said if DD ever has surgery, the docs need to know as she would require much higher doses than usually given. I hope someone finds this information helpful.

yes - orion - it all applies. is your dd still having trouble? how long did it last for your dd? did you have any 'tricks" etc to help cope? what was her diagnosis and treatment? As her docs would say, DD got bit by a "very dirty tick" and got "wholloped". This happened almost 9 years ago. Her original pediatrician passed off the expanding (non-bullseye)rash as a spider bite, and told us to come back if she developed any other symptoms. Several months later it was in her nervous system and was started on some oral abx. Several weeks later she was taken off of the amoxicillin.The ID doc said she had more than enough treatment. Her symptoms were resolving, but not quite all gone at the time. Her WB was still off-the-chart positive. Her LLMD's later would say that was when the damage was done - not that she wasn't treated right away, but what treatment she was given was too little and for too short a time. This just set her up for autoimmune issues, and the co-infections to take hold, as well as develop a Lyme chronicity. Over the past 9 years she's had several relapses. The first one started 2 years after the original infection. She was about 70% better, and still under treatment, when the next one hit. Co-infections were finally identified, and tackled- although there are signs that Babesia is back in play. She is currently on IVIg for autoimmune issues. IV abx and some oral abx for Lyme, other Rx's for hormone dysfunction (hypothalamic hypopituitarism), supplements to protect the myelin sheath and of course! probiotics. She still has a ways to go...currently on medical leave from school. As far as brain fog goes, we play to her strengths (visual). She is more apt to remember something if she sees it...from writing things down for her, to using hand signals. If she's given a verbal reminder- it is a crap-shoot that it even makes it into one ear, much less passes through to go out the other ear.

The inattentiveness, non-cooperativeness and especially brain fog, are indicators that Lyme may still be an issue. My daughter's executive functioning skills plummeted down to the 1%ile in a relatively short period of time. Fortunately for her, she never lost her ability to read, but sustained attention even in this area was hard. Mentally she knew what needed to be done, but physically putting thoughts into actions completely flummoxed her. We thought she was being difficult, the tasks at hand weren't that hard. She knew what to do- just couldn't get it together enough to get it done. Her short term memory (especially when it involved auditory processing) was shot, due to Lyme & Co., adding to the problems. Also, we always thought she had exercise induced asthma. It turned out she had Babesia. Not sure if any of this applies to your situation, but maybe it will give you more avenues to investigate.

It is possible that some, or all, of you have been exposed. It is also possible that some of you are better able to keep the germs in check and may be asymptomatic. Many LLMD's won't treat without signs or symptoms being present. Since Lyme symptoms wax and wane over a period of about 4 weeks, you could keep track of this and see who is more symptomatic and then plan on treating accordingly. The symptoms of different co-infections wax and wane over a shorter time span. [MY DD would have various Lyme and co-infection symptoms that would be here today, and gone tomorrow, but every few weeks it would become much more pronounced for a span of several days, before things quieted down for a bit.] I would also suggest taking photographs of any and all rashes- partly for documentation, but also to help a LLMD to figure out what is going on. Hope this helps.

Wilma, An "IND" on an IGeneX Western Blot means it is a slight, or light, positive - not strong enough to be a full positive or a "+", but that there was some reaction at that band. As was stated, other flagellated bacteria can cause Band 41 to be positive. However, Band 31 is one of THE two most specific bands for the Lyme spirochete, Borellia burgdorferi (the other being band 34). They usually do not appear positive on a Western Blot until after the infection has been going on for over a year. Band 39 is also very specific for Bb. With Lyme, IgM bands generally turn into IgG bands after several months- it doesn't mean a past infection, it means more along the lines of an older (and also, an ongoing) infection. Generally Lyme doctors avoid steroids if there is an ongoing Lyme infection, as steroids dampen down the immune system which would allow the Lyme to grow unfettered. Your doctor would be the best one to advise you there.

My daughter said it has a lot to do with timing... flares are roughly every 4 weeks, partly because Borrelia burgdorferi follows the host's estrogen cycle for it's life cycle. Sometimes she feels as though she is coming down with the flu, but it never really materializes. (In fact she has not had a cold or the flu in 5 years). Sometimes she complains of a sore throat- but that is more of a nerve problem than a throat infection. The achiness, migrating joint pain, and brain fog increases. Oddball symptoms show up again for a few days.(sometimes there can be symptoms she hasn't had in months, for example a headache, or ataxia), We wonder if it is a general worsening of her condition, but then after several days, it all clears out, and usually she is a bit better than she was before the flare... only to repeat over again the next month. It helps to jot down notes daily in a planner. It makes it easier to see trends or patterns. But usually you don't realize it is just a flareup until it is over and you can review things with 20/20 hindsight.

Norcalmom- not sure if this info will help you or just confuse things even more. My child fits into the adolescent onset of PITAND (PANS) presumably set off by Lyme (need to ask her doctors if myco pn. is a player.) It’s been interesting reading this board for the past several months. The hardest part to wrap my mind around is the boards use of the term “exacerbation”. Lyme flares up, not necessarily exacerbates. (Although that has raised some more questions to ask DD’s docs.) Sometimes it is like I am looking at the same coin as the majority here, but viewing it from the other side. My child has: Lyme (which caused hypothalamic hypopituatarism among other ailments) Chronic infection: Babesia, Bartonella, (hopefully both gone for over a year, now) mycoplasma pneumonia, chlamydia pneumonia Chronic Strep Significant Immune Deficiency IgG subclass No known current infections What group is you child in? Group 1 - my child only reacts to strep. other illnesses do not cause exacerbation Group 2 - my child exacerbated, and stayed that way, we see very little difference between baseline and exacerbation, regardless of illness (like Saving Sammy) Group 3 - my child reacts to almost all viral illnesses. I see huge symptom flair within 1-2 days (either just prior or just after) a virus or other infection, and it takes weeks to return to baseline Group 4 - my child exacerbates, but we cannot tell what the tirgger or pattern is with the exacerbation. Group 5 - other presentation (describe) Not applicable, maybe? Both major Lyme relapses, and 1 minor one occurred during the Fall - but exposure to other illnesses not assumed to be the cause. If you had a Cunningham's test - what was the Cam K, and which anti-neuronals were elevated? Cam K2 -132 Anti-Lysoganglioside 1280 Anti-Tubulin 4000 Anti Dopamine 1 4000 Anti Dopamine 2 8000 (not sure if this is considered elevated or not) What symptom group would you put your child in: tics only ocd only tics first, and ocd came later ocd first, tics came later completely balanced - but tics and ocd have only been a minor part of the issues involved How many symptoms do they have at baseline? (list them next to the appropriate group below (see reference list below) Baseline was 9 years ago, before the tick bite- she didn’t have any problems back then. But since the first relapse in 2005: N/A - they don't exacerbate - its been pretty bad one 2-5 6-10 10+ How many symptoms does your child have in exacerbation? (list them next to the group below) during a flare-up: one 2-5 6-10 can be different symptoms, depending on the day, or time of day. With Lyme, symptoms come, symptoms go. The worst ones are just more prevalent. 10+ List of symptoms to pick from not limited to: tics, (almost completely gone), obsessions, compulsions (not major- only 1 that I know of- if she cleans one fingernail, she has to touch all the other fingers), add/adhd, dialated pupils, urinary frequency, phobias, anorexia, body dysmorphia, reassurance questions, regressive behavior, rages/tantrums, insomnia, nightmares, hallucinations, bedwetting, separation anxiety, decline in math or handwriting (hates to use a pen or pencil), depression, extreme irritability, emotional lability, or Other: (in no particular order): Fatigue, General Anxiety, Paranoia, Movement disorder, Sound sensitivity, Dysautonomia (low blood pressure, heart palpatations and occasional tachycardia, dizziness), air hunger; auditory processing difficulties, brain fog, “don’t feel right in the head”; Raynaud’s; vision problems [Whoever coined the term, GRRRR as a symptom got it 100% correct!] Joint pain, shooting nerve pain, rage, headache rarely show up anymore. DD’s major symptom and what prompted the Cunningham testing is the movement disorder: non-Sydenham chorea, paroxysmal dyskinesia and an occasional tic. What is your current treatment, and how is it working? Please note if your child had ivig or PEX prior to the treatment and what the results of that were. Currently on IV antibiotics, IVIg, oral doxycycline, Tindamax, replacement hormones for what her pituitary isn’t producing; supplements for deficiencies, and of course lots of probiotics. The movement disorder is much improved. Finished Babesia and Bartonella treatment about a year ago- have my doubts that Babesia isn’t still around though. Backstory: Basically, DD was bit by a tick 9 years ago. Her pediatrician passed the expanding solid pink rash off as a spider bite. She had no other signs or symptoms until 4 months later when the disease was in her nervous system. The relatively short course of amoxycillin she was put on was neither strong enough nor given for a long enough period of time. We were told that the remaining symptoms would resolve over time. Which, for the most part, they did. The first major relapse was in 2005- it took months for the docs to grudgingly admit that the Lyme was back. Long term oral abx got her 75% better, until she relapsed in late 2007. She is still battling back. As her doctors said, she got “whalloped” by a very dirty tick. She is better off than she was 2 years ago- but still has a ways to go.