Orion

Lyme Western Blot bands 41 and 66 are not specific to Lyme.In fact, Band 66 reacts to hundreds of different bacteria. So by themselves, they can not rule Lyme in or out. In my opinion, keep the LLMD appointment. You need an expert opinion, and they can best inform you what to do, or what to be on the lookout for, and know if further testing is warranted.

Oy! I just sent you a PM, before I read this. Yes, Lyme and Co. can be the cause of the heart pounding, if it is it will resolve with treatment. Did the LLMD mention supplementing with magnesium and or CoQ 10? They may help. After reading about your husband and Myco.Pn..I really need to get my spouse's titers- he's had walking pneumonia in the past, and DD still has positive Myco. Pn IgM and IgG despite being on abx...it makes me wonder if she is constantly being re-exposed. <sigh> You are on the right track, things WILL be better some day!

Yes. Rages are also associated with Bartonella.

I'm so sorry! It is good that you are on top of things. Our neurologist told us that the Asialo ganglioside test is pretty similar to the anti-lysoganglioside test that Dr. Cunningham ran in her study. Happy Mother's Day to you!

So sorry to hear that your daughter is so ill, but it sounds like she is finally on a path to wellness. That amount of sleeping is not unheard of. As she heals, it will improve. Unfortunately, IVIg is not a treatment for Lyme. It is used to help neutralize autoimmune processes that can be associated with Lyme. It is hard enough to get insurance to cover IV antibiotics, much less IVIg, if Lyme is the diagnosis, sad to say. Your best bet would be to research what conditions your insurance will cover IVIg for, and then see if any of those Dx would apply to your daughter.

I'm sorry if I wasn't clear. You do want to use the tubes this June and Sept. Due to the life cycle of the tick, however, you won't see the full benefits of using the tubes until next year. The Fall application will kill off newly-hatched larval ticks feeding on the mice over the fall and winter. So they won't be around to molt into those dangerous poppyseed-sized nymphal ticks next Spring.

Fightingmom- It is quite understandable, and justified!, to be pissed off. Why it is so much easier to believe abnormal test results for our kids, instead of for ourselves, I don't know. We are perhaps much more objective in figuring out their problems instead of ours. I am glad you have some answers. That band 34 is an certainly an indication of chronicity as it doesn't show up early in the infectious process at all. Yes, track both yours and your sons symptoms- good days and bad. It doesn't have to be elaborate- I use a Hallmark datebook for DD and jot down any new or worsening symptoms. I also rate the days: 0 for whatever the current baseline is, +1 or -1 if it is better or worse than baseline. Bring the datebook to every Dr. appt. Our docs appreciate that, that way you can give a specific answer as opposed to an educated guess. It also can serve as a reminder for what questions you want/need to ask. [i have to admit, I do record things religiously for DD, but not for myself...Hmmmm I really do need to improve on that.] DD's flare-ups were like clockwork. Lyme every 4 weeks, Babesia every 3. Every few months there was a double whammy, and we learned not to schedule anything on those days. Good Luck! Feel free to PM me if you have any questions. ~Orion

You can get Permethrin at Lowe's, Home Depot, nursery or a garden supply business. I've made my own with cotton balls and toilet paper tubes. Be careful not to get the liquid Permethrin on your skin as it is toxic. Same goes for Sawyer's (or another brand)clothing (and sneaker!!!!) spray. It is OK after it dries to be near your skin, but not when it is liquid. On the East Coast, the time to use Damminex or Tick Tubes is in June and Sept. It won't make much of a difference this year, but by next Spring, you should have a lot less ticks. Deer (and birds) bring the ticks into a new area, but the larval and nymph ticks pick up the spirochete and other germs from the mice, chipmunks, moles, birds, squirrels etc.which then gets spread to people. If you can control the mice population, that is a huge help also.

Unfortunately, Imugen is no better than Quest or LabCorp, but insurance will cover it, and hopefully the test will yield some clues. Make sure you get a copy of any results...even if the Elisa is negative. (sometimes the report will read that a positive is >.90, and your result was .83 - but you wouldn't know that if you didn't get a copy of the results.) If the Elisa is positive, then they will run the Western Blot, which may be negative, with the report then stating that the entire test was negative. It is very helpful to know which, if any, bands on the Western Blot are actually positive (or "Reactive"). This is assuming that the Doc didn't just bypass the Elisa entirely, and requested the lab to run only the Western Blot.

Anything is possible. There are a lot of crappy germs in the area, the local pharmacy was crazy busy today. Keep your camera at the ready, but hopefully you won't be needing it. Hang in there!

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help. I was the one who said this in a different post. This is how our Yale neurologist explained it to us. He has had journal articles published and also presented at AAN conference on some of his research with IVIg. So, for me at least, this does hold water - until the next new discovery comes about and everything changes yet again. We are also dealing with PANS via Lyme, not strep, how much that changes the equation, I don't know- not sure if anyone really does.

As DD's neurologist explained it to us, IVIg neutralizes the auto-antibodies, and to help quell the autoimmune damage. If there is still an infection present, then that needs to be treated as well, so I doesn't fuel the autoimmunity.

My understanding of the test is that it is very specific for Borellia burgdorferi, but not all that sensitive. In other words, if the test is positive then Bb. is involved, but it also misses a lot of positive infections. I think the WB band 23 is much more indicative of exposure- isn't that one of the Lyme specific bands??

Oh No! Hugs to you and your family!

Yes, I'd keep the dosage the same until the LLMD says differently.

Several of the co-infections can cause rashes. Except for Bartonella,they aren't too common, but they do occur. Take some photos, date them, and add it to the Lyme rash photo to show the Dr.

Could the stress of being in the dentist chair be enough to cause a flare-up? As opposed to something the dentist or hygenist actually did?

Take anything I say with a grain of salt, as I am not a Lyme physician, but to my untrained eye, it very well could be a Lyme rash. Compare your rash to this picture. With the original tick bite, a rash is only seen, roughly, 60% of the time. Of these, the stereotypical "Bulls-eye" rash is not the most common presentation- a solid expanding pink rash is. An EM rash can be expressed later on in a disseminated case, in fact, multiple rashes, none of which is where the original tickbite occurred, can occur. All too frequently, some sort of stressor, an accident, surgery, in your case, perhaps the re-vaccinations, 'awaken' a previous Lyme infection. A good LLMD can tell you more.

I totally understand how you feel, but for different reasons. We are dealing with PANS/PITAND- via??? Lyme, Myco.Pn. and/or strep? DD seems to have hit the trifecta. I don't feel totally at home on either site, PANDAS/PITAND or Lyme, as what we are dealing with is so much more than just one or the other. I read both sites, and get gems of info from each, since there is a lot of issues beneath the surface that is common to both (immune, genetic, auto-immune, disregulation etc).

I think it all depends on the state or the bent of a particular medical board. At least with PANS/PANDAS you have some NIH support for diagnosing and treatment, and it may not be so problematic listing this doctor on such a list. Lyme, unfortunately, isn't there yet. Thank you for editing your post, I too don't want to lose another physician.

Lyme has a propensity to set up in the eyes and the associated nerves. My daughter had many vision and focusing problems because of Lyme, but not the specific one that you mentioned. I hope it is a transient problem. PM sent.

The Ganglioslide GM1, Asialo-GM1 is an autoimmune marker, similar to the anti-lysoganglioside test that Dr. Cunningham's lab runs. So if this is abnormal, it can indicate basal ganglia autoimmune issues (i.e PANS/PANDAS). The B12 could be high if your child is supplementing it, or if it is an ingredient in a multi-vitamin. edited to add: The High C3D immune complex result could also be why more bands weren't positive on the Lyme test. The antibodies are busy surrounding the germs and aren't free and available to be detected by the test.

The major difference between IGeneX and the other Lyme tests is that IGeneX uses several strains when they make up their test kit- not just one. This is why it is a more sensitive test than just about any other available. From your other post, you already know that MDL does do PCR testing for a few different Lyme strains. Just keep in mind that a PCR test is much like looking for a needle in the haystack. If it is found, that is undeniable proof of exposure to that strain (or germ). But if the DNA isn't in that very small blood sample that is being tested, the negative result just means that it wasn't found this time around.

Several LLMD's I know are shying away from MDL. Have you looked into Clongen (MD). OR StonyBrook (NY)? I believe StonyBrook will report all the Western Blot bands if your Dr. requests that.

Over time, we've had Lyme bands, both IgM and IgG, show up, disappear, and sometimes show up again. The lab tests, no matter which company does it, are not that reliable. We've had blood draws split up and sent to different labs, return with differing results. As Lyme researcher Ben Luft (StonyBrook) said at the Institute of Medicine hearings on Lyme Disease, the antibodies are there, but the [current] testing aren't picking them up. Over time, ideally you would like to see the IgM bands convert to IgG, then disappear. Of course, since that is the ideal it doesn't always happen that way. Bottomline: is the child still symptomatic? And if not, for how long? Testing can only give a partial picture of what is going on, it shouldn't be the sole criteria for treatment.