lfran

This is not walking, and may be too intense, but have you considered a sport that is not a team sport, so that whatever level he can do is okay? For instance, my two boys are in Tae Kwon Do, which they think is very cool, and in our particular program there is a lot of calisthenics and stretching as well as practicing kicks and punches. However, it is all done against the air, so no contact, and if you don't show up for a class or two, for whatever reason, you're not letting any teammates down, so it's a good sport for people who have ups and downs in their health and energy level.

Bumping this up, hoping for an answer. We're about to do a coinfection panel, with no insurance coverage, so I want to make sure I get the best one. Thanks!

Wow -- what great information. Is that what Dr. J put your DD on, or Dr. B, or both combined? Thanks!

Hi all. I know Igenex has a coinfection panel (with some new tests included, including a Bartonella FISH test. However, a I recall that many of you have posted that your LLMDs prefer a different lab for coinfection screening. Can you post which is the preferred lab (and why?) Thanks.

You are amazing, and an inspiration to us all, to fight so hard for treatment for yourself. I wish you all the best in your recovery process.

If those were actually your daughter's results, it sounds pretty positive to me (of course, I'm not an MD!) Which lab ran your blood work? And when do you expect your Igenex results back?

Are you looking at the general information or at your daughter's specific results? For instance, on the Igenex blood results that we got back, there is information similar to what you are quoting and it was just stating the criteria that was needed for a positive result by Igenex standards or by the standards of the Center for Disease Control (CDC). For your daughter specifically, if it is from Igenex, there should be a VERTICAL list of numbers like 18 kDa, 22 kDa, etc. There should be one of the following symbols next to each number in the vertical list: -, +, ++, IND. A - is negative for that antibody. A + is a postitive, more than one + is a strong positive, and an IND is an Indeterminate -- there was some reaction, but not enough to show a firm postitive. So, you should look at the ones that have an IND or a + and see if the ones that are so marked meet the criteria for a positive Western Blot by either CDC or Igenex standards. The standards are different for IgG and IgM and different for Igenex and for CDC. The criteria are what is listed in the paragraphs above the vertical lists. That is because some antibodies are very Lyme specific and some aren't, so they want to see a specific set of antibodies before saying it is Lyme. However, an LLMD may interpret your daughter's results differently than the official criteria and may still decide to go ahead and treat. Hope that helps.

Here's a link to the full article: http://www.aldf.com/pdf/Armins_Published_paper_in_Brain.pdf If you google the name of the article, you will find other relevant info, as well.

We have our first LLMD appt next week. I just need reassurance -- the kids with tics and OCD as their primary Lyme symptom are getting better/cured with LLMD treatment, right? I know this seems silly to ask, but DS9 seems so atypical -- his tics and compulsions seem to be brought on by specific events (especially reading) that I keep wondering if they are related to eye movement or head position, rather than a disease. I want reassurance that if we go down this heavy duty antibiotic path, these neurological symptoms will get better. That's what's happening to a lot of our kids, right? Thanks.

Please help me decipher. DS9 has positive urine DOT BLOT after provocation in January, so I know he has an active lyme infection. However, when I check his symptoms against all the Lyme lists, he doesn't have that many. I am going to list them, and hope you guys will tell me if/where they overlap with your kids symptoms and what your LLMDs say. Do you think these scream lyme, suggest lyme, or may be not very related to lyme? Thanks. 1) moderate light and sound sensitivity 2) high anxiety for a couple of specific situations: traffic in parking lots, dark staircases, some corners of buildings 3) he used to have a LOT of tics, but they seem to have gone away. Instead, he has complicated motor compulsions, that are triggered by specific events, such as hearing a high-pitched s sound. He also has a couple of checking rituals -- checking for the right page number three or four times when turning the pages in his math book, for instance, or checking the right position when putting on headphones that are marked Left and Right. 4) Some difficulty telling about events that are important to him -- it is often as though he speaks in individual sentences instead of fluid paragraphs. A lot of backing up and repeating, and these little hiccuppy sounds in between a lot of phrases. 5) Poor handwriting (getting better), poor spelling (lack of study, I think), and used to have very poor computation skills but tutoring has brought him to the top of his class, so that may have been plain old regular lack of motivation. I think that's pretty much it. He can focus on school tasks for hours and he is doing well in school. Can and does go everywhere. Participates actively in martial arts (no lack of energy). I would really appreciate any feedback. I know that so many kids (and adults) are hit so hard with this disease -- is it possible to have Lyme mildly, and if so, will the LLMDs still accept him as a patient?

Can anyone give me a sense as to how much treatment might cost per month? Not talking about doctor visits -- just the meds, if I have to buy them without insurance. (We're with an HMO, and they won't refer out, and my prescription plan will only cover meds if a plan doctor writes them). I know that azith and augmentin are very expensive in California (they seem to be a lot cheaper elsewhere!) but I have no experience with some of the other abx that people have mentioned. Thanks.

I just learned that a friend of a friend who lives in CT has Lyme but is having trouble getting a physician to treat her. I am on the West Coast, so I haven't been paying attention to East Coast referrals. The patient is in her early 20s. Can someone PM me the names and any contact info for some docs that I can send her way. Thanks.

Thanks. When I got the results I was so happy and emotional -- I began to cry. Then, I started thinking about that "presumed positive" and there is info out there that you should confirm the DOT BLOT with a "reverse western blot" on the urine but we didn't order that and I have to call Igenex today to see if it is too late (I'm sure it is, it took forever to get the results back due to administrative and communication problems) and that just got me wondering...even more tests????.

Great news! Good luck. What part of the country is this new doctor in?

Hi all. Just got DS9's urine DOT BLOT test back today. Sent in two samples -- one taken on day 21 (last day) of 500 mg azith and one taken two days after that. Not the normal provocation protocol, but he was on the azith for something else and that's what we were able to do. The first sample came back positve and the second one was negative. My understanding is that a single postive DOT BLOT is a smoking gun for Lyme. Is that true? Igenex's lab results say that it is a presumptive postive diagnosis, since there can be cross reactivity. They test for antigen reaction to these BB antibodies: 23-25 kDa, 31 kDa, 34 kDa, 39 kDa, and 93 kDa. I am seeking any thoughts, encouragement or cautions. My son has pretty much switched from constant tics (3 years of duration) to triggered compulsions (about one or two months in duration). Thanks.

Thank you both. Lisa, the Tourettic OCD sounds a lot like my DS9 as well. The book sounds very interesting. I will order a copy. Are you also treating for Lyme? If so, has the treatment helped with the tics/OCD at all? We're about to go down that road. Do you have a particular type of physician who is helping with this? We live in Los Angeles and there are a lot of OCD clinics around but I don't know if they are on top of this subtype that our sons seem to have. I guess maybe I'll call around and ask.

A while ago Bill posted in his charting post that sometimes his son would show "OCD with triggers". I had some questions about this, so I am reposting and bumping up my old post, hoping someone can answer this. Thanks. Bill, thanks for posting. Can you elaborate on what "OCD: functional with triggers" means? My DS9 has always had tons of tics, but now I see a lot more triggers to his motor movements and I am wondering if it is time to start thinking of it as OCD instead (just the compulsions part, I don't think there are any obsessions. And there doesn't seem to be anxiety associated with the compulsions -- he just has to do them, but they are ritualized to specific situations, like picking up a book to read, or closing the car door, or getting an answer correct on his homework, or hearing a certain sound). Can you (or anyone) shed some light on this? It's been tics for so long (years) but this seems different. (and the tics have mostly gone). I'm confused. Thanks.

Does anyone know if a standard O & P test will show if there is yeast? A past O & P for my son said "few yeast present". This time, there was no mention of yeast at all. I can't figure out if that means he has no yeast overgrowth, or if they just didn't test. Can't get a clear answer from the lab. Thanks!

DS9 always has way fewer tics with a fever. Why?????

I would love to know a med that worked on D2 receptors specifically. DS9 had the highest D2 antibodies on the Cunningham test that I have seen posted yet -- they were 32000. All else were at the high end of normal range. Any more info would be great! Thanks!

Bill, thanks for posting. Can you elaborate on what "OCD: functional with triggers" means? My DS9 has always had tons of tics, but now I see a lot more triggers to his motor movements and I am wondering if it is time to start thinking of it as OCD instead (just the compulsions part, I don't think there are any obsessions. And there doesn't seem to be anxiety associated with the compulsions -- he just has to do them, but they are ritualized to specific situations, like picking up a book to read, or closing the car door, or getting an answer correct on his homework, or hearing a certain sound). Can you (or anyone) shed some light on this? It's been tics for so long (years) but this seems different. (and the tics have mostly gone). I'm confused. Thanks. I also plotted the first six weeks of data in Excel looking for correlation between medications and scores. Correlation with Tindemax on weekends was clear. I do not keep it up to date, probably will not plot again until later in February as our next appt. with LLMD is 1 March.

Thanks!

Can anyone tell me how long it takes to get urine dot blot results back from Igenex? Thanks.

Hi all. DS9 is currently on 500 mg azith. I had thought to take advantage of this to run the Dot Blot provocation test. Any thoughts on this? Is azith alone considered enpugh of a provocation? Also, the test protocols say to take on specific days after starting the provocation agent -- ie, days 2, 4 and 5 (just an example; I don't remember the exact days but they were low numbers). However, he has been on the abx for 2 weeks now and will be on for at least a week more -- so I have already missed days 2, 4 and 5. I am assuming that that doesn't matter, and that as long as he has been on the abx for a while and we capture on multiple days, it will be okay....but I'd like to hear any thoughts from those who have gone through this and/or have more knowledge. Am currently waiting for an LLMD appt...but I thought to take advantage of his currently being on abx to check the urine. Thanks!

Does anyone have any info on this? The test results just came back and they are all within the normal range, except for the one that says CD3/100 cells which was just the tiniest bit high. Is this the test that you guys have been talking about? Thanks.