PacificMama

Hi, I pop back in here every once in a while -- my daughter had PITANDS (lyme induced). I have said this a whole bunch of times on this forum, but getting worse when beginning or changing antibiotics is a CLASSIC symptom of lyme and/or similar coinfections. As someone else noted, it is called a herx reaction and only certain diseases will produce this (NOT strep). Azith is a very common treatment for lyme, and it always produced a herx reaction when my daughter started it. Getting worse means an exacerbation of symptoms, or appearance of new symptoms. And sometimes this just means that anxiety and irritability increase. PLEASE contact Igenex labs and ask for a test kit to be sent to you. They are a lyme/ coinfections specialty testing lab, and one of the only reliable ones out there. It's almost not worth it to rely on any other lab. http://igenex.com I guess it is possible for it to be yeast related, or food dye. But honestly, anyone who gets this reaction should absolutely consider lyme -- as herxing is one of the telltale ways of verifying a diagnosis. Best Wishes. Mary

A herx is simply a worsening of existing symptoms, or a presentation of new ones. ABSOLUTELY, it can be all neuro/behavioral. I have been through this with my daughter. I decided to post a separate topic for others to see. Hope things improve for your son soon. pacificmama - curious for your thoughts. when my son had the bad reaction with azith, i knew of a herx but believed it to be flu or cold-like symptoms. do you know what is typical with neurological/behavioral symptoms of lyme or is it mainly described with physical symptoms?

Good question. I think it's really imperative to be under the care of a doctor who understands these type of infections. For example, most lyme doctors treating with appropriate dosages will have the patient stay the course through the herx -- unpleasant as it may be. However, too much bacterial die off happening too fast can be a dangerous situation. So yes, for anyone who gets a ramp up of symptoms when starting abx should most definitely get tested for lyme and other similar infections (myco, bartonella, babesia, etc.). Beyond saying that, I'm really hesitant to advise as to whether you should continue the abx until such time as you get the testing done. I would just say to get the testing done as soon as possible -- preferably from Igenix labs.

Hi, Just dropping in today and saw this question (which I see similarly questioned from time to time in other posts) I just want to say that getting a ramp up of symptoms when starting Azith is a classic symptom of lyme and coinfections. This is called a herxheimer reaction, and it only happens with certain diseases. Azith is a widely used lyme treatment. The worsening of symptoms is not a given when a person has lyme, but it typically does happen. This is due to the toxic die off of bacteria. This may last just a day or two, or it may run into a couple of weeks. It also may cycle a bit after that. However, after the initial worsening, you should then see definite improvement given you are on the right dosage. Alternatively, if there is a yeast problem I suppose it's possible that starting abx would cause a worsening of symptoms. Otherwise, other than an allergic reaction or drug reaction, I know of no other reason why the Azithro would create a problem. Hope this helps with anyone who has this issue, or might be wondering about lyme or similar bacterial infections.

Hi, If your son is one band short of cdc positive for lyme, then he most definitely has lyme disease. CDC positive is simply a technicality for purposes of reporting. It sounds like your doctor is open minded, but possibly not very experienced with lyme disease. I can tell you that all of the symptoms you describe are most certainly neuropsych symptoms that can be caused by lyme disease and coinfections. I would strongly urge you to contact the following lyme disease association and ask for a doctor referal. www.ilads.org A very experienced lyme doctor will help you sort through this, and will consult with your current doctor as well. I would hate to see you go the route of psych drugs, when perhaps a change in his antibiotic protocol is all that is necessary. I do not post here often these days, but you can search through my older posts, or those of Lyme Mom, for more information. Or PM if you'd like. Good luck.

I'm aware of the "East Coast" and "West Coast" panels that Igenex offers, and I apologize if I was unclear, I was asking if there is a sense that there is a clinical difference between Lyme on each coast. This has always been an issue in "American" vs. "European" Lyme, not sure if there is a consensus on whether there is a clinical difference among continents. Dr. T Yes... sorry, I misunderstood. Yes, there are clinical differences in presentation. I've spoken with our doctor about this, but I don't think I'm able to accurately convey what they might be right now. If you do end up making contact with Dr. Fallon, I'm sure he could explain the subtleties. And just generally, it's an incredibly complex disease in that it is completely multi-systemic. And given that each tick's infection load is unique, and each person's immune system is unique -- it makes for one highly individualized disease as far as symptom presentation. Additionally, symptoms wax and wane, and change over time. Hope that helps.

Yes, there are regional differences in tick-borne diseases. The better tick-borne labs are the best source of information about these differences. For instance, Igenex actually has different panels set up for the different U.S. regions. See http://igenex.com click on "what to test for" and scroll down. See also my post on testing suggestions on this forum, although it doesn't account for regional differences: http://www.latitudes.org/forums/index.php?showtopic=7246

Yes, this is the $64,000,000 question. In my daughter's case, she became gravely ill following a tick bite. However, her symptoms were slow to appear until a few months later when she just began rapidly deteriorating. It occured to me years later that she was bit by the tick a couple of months after her 2yo immunizations. Since the immune system is depressed for several months following immunizations, I've wondered if that were the reason she could not handle the bacterial infection (and of course she was only 2!). Later, after she was symptom-free for some time, she had a regression in symptoms (although this time only the ticks/ocd symptoms appeared). Again, this followed after her 5yo immunizations. (alas, no more immunizations for us!). This is a 1,000 piece jigsaw puzzle -- trying to figure out all the interlocking pieces. I absolutely agree with much of what Chemar, Caryn, and others post here. No matter what, we're all better off if we practice this advice. Antibiotics literally saved my daughter's life as she was incredibly ill. But even if you use them for a time, you ultimately have to fix the terrain as Chemar has said. I know that in other posts I have advocated for people who might have serious infections other than strep to get the correct diagnosis so they can be on the correct abx. I still stand by that, because once you do get on the correct abx, at the correct dosages, you will have some recovery and can terminate their use. For instance, our original ped put my daughter on Augmentin for a suspected (non-lyme) infection early on, before we got confirmed lyme diagnosis. However, this only served to make her ultimately much sicker. Once we went on the Omnicef/Zitho combo, she show immediate improvement. She is now off all abx and doing fantastic. And I am on to fixing my daughter's immune system in more natural ways.

I read this advice often too -- about how if you get the tick off within certain amount of hours that you will be safe. However, this is not really true or reliable (just one of those things that keeps on getting passed on incorrectly). Yes, you certainly have a better chance the sooner you get that tick off. But it would be wrong to say that this is sureproof for not contracting something. Especially if you improperly remove a tick.

This has somewhat been covered here, but I’ll add the instructions for getting lyme testing done through the main tick-borne diseases labs that most of the better lyme docs use. One of the primary differences in these labs is that their Western Blot tests do test for bands 31 and 34 in addition to the other bands. 31 and 34 are specific only to lyme, but most labs do not test for them (long story re crazy CDC requirements). However, I think it might be possible to ask a lab to include 31 and 34 – I have heard this. But I would recommend if at all possible to use one of the following labs, as they are tick-borne specialists and do much more sensitive testing. These are the typical tests my daughter has had. Remember, there are different strains of vector-borne diseases in different parts of the country. So this may affect which tests a (knowledgeable!) doctor would determine to run. There are many options! Igenex: www.igenex.com Western Blots for Lyme IGM, and Lyme IGG. To keep costs lower, Igenex does not handle insurance. So you must pay in advance, and you can submit for reimbursement yourself. I think we end paying about $300 (?) for these 2 tests. They will send you a kit with instructions to have your blood drawn and sent back to them. You must have doctor’s signature on your order form. (if you are using an out of state doc, they can print the order form off the web site and send it to you with their signature and test indications. The lab will send you the kit). Results are reported to your doctor – takes almost 3 weeks. Clongen: www.clongen.com PCR Amplification tests for Borrelia (lyme), Babesia microti, and Barnonella hensalae. *will bill insurance - *will send kit MDL: www.mdlab.com Lyme (b. burgdorderi) DNA by real-time PCR; Bartonella henselae by Qualitative PCR; Mycoplasma Fermentens by Qualitative PCR; Babesia microti by real-time PCR; Ehrilichia chaffeensis (HME) & Anaplasma phagocytophilia (HGE) by real-time PCR; Babesia microti IGG by Elisa; Lyme (b. burgdorferi) DNA by real-time PCR *will bill insurance - *will send kit Quest: http://www.questdiagnostics.com/ Health Profile 8 (plus other occasional misc. tests). *will bill insurance

I would say that overall the lyme patients are united. Mostly, it's a united front against the idiot doctors and guidelines that say "lyme is treatable with 2 weeks abx, and after that if you still have problems it's all in your head and I can't help you". Nearly every state has a patient advocate organization. There are well organized national groups the do advocacy work -- education and introducing legislation and things like that. Senators and representatives from some of the most endemic states are very aware and involved in helping. There are organized marches and petitions and such. There are magazines and web sites galore. Many people like to compare the movement to the early AIDS activists -- when these sick people were marginalized and had trouble getting treatment and getting their insurance companies to pay. The AIDS activists took a very agressive approach and changed everything. But yes, there are some disagreements about treatment. This probably comes more into play when you are talking about alternatives to abx -- and some of it gets pretty crazy. The lyme boards are extraordinarily active. I guess with any medical condition, there are going to be these battles for diagnosis and treatment. I mean, just think about cancer and all the possible ways of dealing with testing and treatment. So, I think while it is maddening, it just comes with the territory too!

I just posted this to Dr. T in another thread... but thought I'd post it here too. For those of you within commuting distance to NYC, Columbia University has a Lyme and Tick Borne Diseases Research Center. http://www.columbia-lyme.org/index.html They have current research projects open, and if you qualify you can be eligible for free testing and treatment. Please check out this link: http://www.columbia-lyme.org/research/cr_research.html For information on how to inquire: http://www.columbia-lyme.org/patients/part...e_research.html

Yikes... you definitely have a tick problem! Your kids are surely a candidate for lyme. As to test results, it would be difficult to say how it would turn out at this point. The most important thing is to get to a lyme doctor who can help you sort through it all. Lymemom has a doctor in the DC area she can refer you to. Why don't you PM her and she can tell you more. Good luck. Mary

Thanks for the thoughtful post. I had to chuckle about your description of highjacking the OCD board. Once we find enlightenment, we want everyone to find enlightnement! Yes, all we want is to get our kids well. Labels and categories are useful, but then they can pull us apart too, rather than together. Like SF Mom said, I really think of this as PAND, and what pulls the trigger (strep, lyme, myco, other!) is the individualizing factor. My hope was that anyone coming here, or already here, would carefully consider all possibilities as it relates to underlying infection. Regards, Mary

Glad to see this being raised. I obviously have no detailed information on the Cunningham study, but had wondered if people were under the impression that somehow the findings were unique to strep -- and what you are saying is "no". I'm sure people will want to get opinion or comment from Dr. C for further thought.

Dr. T, Glad you are still sorting through the 41 band connection. This may be helpful... are you aware of the Coumbia University Lyme and Tick Borne Research Center? Right in your neck of the woods. http://www.columbia-lyme.org/index.html It's an excellent resource. Here is a link to their current research studies, as well as past studies. http://www.columbia-lyme.org/research/cr_research.html Surely they have notions or findings on just the sort of things you are considering. The head of research is Dr. Brian Fallon -- I think it would be a worthwhile conversation. Here is his bio: ----------------------- Brian A. Fallon, MD, MPH, Associate Professor of Clinical Psychiatry at the Columbia University College of Physicians and Surgeons, is the director of the Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center. A graduate of Harvard College, he obtained his M.D. degree from the Columbia University College of Physicians and Surgeons, as well as a master's degree in public health epidemiology from Columbia University. He did his research training and an NIH fellowship in biological psychiatry at Columbia Presbyterian Medical Center and the New York State Psychiatric Institute. Dr. Fallon’s research has focused on neuropsychiatry – the discipline that studies the behavioral and mood effects of diseases that affect the brain. His particular areas of research focus in Lyme disease include phenomenology, diagnostics, neuroimaging, biomarker, and treatment studies. His expertise in psychiatry includes neurocognitive testing, clinical trial development, obsessive compulsive disorder, and hypochondriasis. Dr. Fallon has published over 100 peer-reviewed articles, review papers, and book chapters and he has served as a reviewer for many journals, including JAMA, Journal of Infectious Disease, Clinical Infectious Disease, and the American Journal of Psychiatry.

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this? The key is obviously getting the right type of treatment for the underlying infection(s). Thanks for your thoughts. Mary

BubbasMom, As was mentioned, a lyme doc would absolutely have begun treatment based on what you've described. The short answer to the issue of a positive test is that the CDC says that for reporting purposes, there must be 5 bands positive. However, this is only for reporting purposes. They also advise that lyme is a clinical diagnosis, and treatment should given accordingly. Anyway, the bright spot for you is that you are very near one of the best lyme docs in the country -- Dr. Charles Christ who Dr. T mentioned in his opening post. He is in Columbia, MO -- here is the link to his web site: http://www.drcharlescrist.com/ Call ASAP to make an appointment, and explain your situation. Keep us posted... good luck. Mary

While it is sometimes quite obvious, and may leave a scar, this is not the case in the vast majority of cases. Which of course is the problem. It seems unbelievable that a person would not see the tick, but a tick in the nymph stage (which does most of the biting) is no bigger than the period at the end of this sentence. Here is a picture that shows that: http://www.lymedisease.org/lyme101/ticks/about_ticks.html

No, No... this is absoultely not true! Not sure who is telling you this. All you need to do is have a doctor write up orders for testing at Igenex lab (for example). Either your doctor will send you the blood draw kit/instructions from Igenex, or Igenex will send you the kit at your doctors request. You will then take the kit/instructions, plus your doctor's orders, to any blood lab, hospital, what have you. They will draw the blood per the orders and instructions, and send the blood vials to Igenex in the packaging provided with the kit. You may have to pay a small blood draw fee, or they may bill your insurance, depending on your situation. Of course you have the right to have lab work done anywhere in the world that you want! I mean, if you are using state-funded care or something, then yes, I suppose they could dictate what you do. But otherwise, no, of course this is easily done. You could google Michigan Lyme Disease Association and call for assistance -- they will be very helpful. Good luck!

Hi, See my other post in "Lyme-like" thread. I've put in some information on symptoms. That's great that you had Igenex testing. Please keep us posted. I'm happy to help if you have more questions. Mary

Hi, I also wrote the other day about the "herxheimer reaction" -- this is when symptoms initially worsen when a person begins antibiotic treatment. This would be in the case of lyme or myco. Then you begin to see improvement if you are on the right course of abx. However, if you are dealing with lyme or myco, then steroids can make the condition ultimately worse (even if there is an initial relief from symptoms, ultimately steroids will precipitate a decline). Sorry you are going through this... I hope you see some improvement soon.

Couldn't figure out how to edit my post.... Meant to add that symptoms wax and wane... and may change in that some are dropped, some are added.

Lyme and Children: 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. LYME SYMPTOMS - Lyme is multi-systemic disease. You may have only a small subset of these symptoms, or you may have a larger variety. It is a highly individualized disease. ONLY A SMALL PERCENTAGE OF THE PEOPLE HAVE THE INITIAL RASH AT THE SITE OF THE BITE. Early Symptoms Often starts with flu-like feelings of headache, stiff neck, fever, muscle aches, and fatigue. If a rash appears, it may appear within a day of the bite or as late as a month later. This rash may start as a small, reddish bump about one-half inch in diameter. It may be slightly raised or flat. It soon expands outward, often leaving a clearing (normal flesh color) in the center. It can enlarge to the size of a thumb-print or cover a persons back. Later/Disseminated Symptoms Some people do not notice these early indicators of infection. Early manifestations usually disappear, and disseminated (other organ system involvement) infection may occur. GENERAL Profound fatigue, severe headache, fever(s), severe muscle aches/pain. BRAIN Nerve conduction defects (weakness/paralysis of limbs, loss of reflexes, tingling sensations of the extremities - peripheral neuropathy), severe headaches, stiff neck, meningitis, cranial nerve involvement (e.g. change in smell/taste; difficulty chewing, swallowing, or speaking; hoarseness or vocal cord problems; facial paralysis - Bell's palsy; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; change in hearing; deviation of eyeball [wandering or lazy eye], drooping eyelid), stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes (memory problems, difficulty in word finding, confusion, decreased concentration, problems with numbers) and, behavioral changes (depression, personality changes). Other psychiatric manifestations that have been reported in the scientific literature include: panic attacks; disorientation; hallucinations; obsessive compulsive disorder; extreme agitation; impulsive violence, manic, or obsessive behavior; paranoia; schiziphrenic-like states, dementia, and eating disorders. Several patients have committed suicide. EYES Vision changes, including blindness, retinal damage, optic atrophy, red eye, conjunctivitis, "spots" before eyes, inflammation of various parts of the eye, pain, double vision. SKIN Rash not at the bite site (EM) - This skin discoloration varies in size and shape; usually has rings of varying shades, but can be uniformly discolored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crusty/oozy). The rash may develop a bull's-eye rash or target look. The shape my be circular, oval, triangular, or a long-thin ragged line. Other disseminated skin problems include: lymphocytoma, which is a benign nodule or tumor, and acrodermatitis chronica atrophicans (ACA) which is discoloration/degeneration usually of the hands or feet. HEART and BLOOD VESSELS Irregular beats, heart block, myocarditis, chest pain, vasculitis. JOINTS Pain - intermittent or chronic, usually not symmetrical; sometimes swelling; TMJ-like pain in jaw. LIVER Mild liver function abnormalities. LUNGS Difficulty breathing, pneumonia. MUSCLE Pain, inflammation, cramps, loss of tone. STOMACH and INTESTINES Nausea, vomiting, diarrhea, loss of appetite, anorexia. SPLEEN Tenderness, enlargement.