mama2alex

We just got the results back from Igenex and the tick tested postive for borrelia and negative for all co-infections. This tick was in San Mateo, CA on a popular, paved walking/running/biking trail! This makes me want to hang up my hiking boots for good.

Saying a prayer for you all right now. And you'll be in my thoughts tomorrow morning.

Yes! Our son is doing so much better since starting Lyme/Bartonella treatment 8 months ago. He's not well yet, and its two steps forward, one step back, but we've seen many improvements and he is a much happier kid than he was at this time last year. He is sleeping through the night for the first time in his life, we can turn off his lamp at bedtime, he can sleep over at a friend's house, he's making it to school much more often, no more robber/"checking" OCD, no more yelling/raging every day, he's not terrified 24 hours a day, no more "bi-polar" symptoms, he's in sports, starting an instrument, I could go on and on. I think we have a ways to go, but I have no regrets about the direction we've taken.

Yes! Our son is doing so much better since starting Lyme/Bartonella treatment 8 months ago. He's not well yet, and its two steps forward, one step back, but we've seen many improvements and he is a much happier kid than he was at this time last year. He is sleeping through the night for the first time in his life, we can turn off his lamp at bedtime, he can sleep over at a friend's house, he's making it to school much more often, no more robber/"checking" OCD, no more yelling/raging every day, he's not terrified 24 hours a day, no more "bi-polar" symptoms, he's in sports, starting an instrument, I could go on and on. I think we have a ways to go, but I have no regrets about the direction we've taken.

We are checking every 6 weeks. He is on multiple abx for Lyme and Bartonella. I think they run a "CBC" but not 100% sure.

I'm so sorry you are going through this! When we first tried a 5-day steroid burst with our ds9, he got worse and by day 3 was starting to "hear things." We stopped at that point and a couple of days later started to see significant improvement. We think the steroids did their job, but while he was taking them he was having side-effects. The improvement did not last however - 1 1/2 weeks later he caught a virus and we were back to square one. Have you resolved your questions about Lyme yet? It may make sense to see a different Lyme doc, if the one you saw will only diagnose based on testing. A good LLMD will look at everything that could be affecting her - Lyme, coinfections, mold, viruses, strep, allergies, parasites, vitamin deficiencies, heavy metals, etc. They will be able to diagnose her pretty well based on both symptoms and testing. Then they can treat her with medications/herbals/supplements based on their assesment. At the point, her response to treatment will give the doctor a better idea of what's going on as well. This seems like a safer route to me than steroids and IVIG without really knowing what infections/issues she's dealing with - especially since she is SO sensitive.

Thanks for all the info! It seems like the hands are particularly vulnerable... Mine are not much better yet and its been 12 days since it started and 5 days since I went off the doxy!

DS's last Diptheria, Tetanus, Pertussis vaccine was when he was 6. I believe it triggered his asthma, which started coming on with all colds/illnesses about 5 weeks after the shot. We'll never know for sure, of course, but that's what my mommy's intuition tells me. You can get a simple blood test to check titers for these diseases. If the titers are within a certain range, the child still has immunity. When we did this, we found our son had zero immunity to pertussis, although he was fully vaxed at that point. I think this may be the reason why there are flares in whooping cough occasionally, not because of the evil anti-vaxers, but because the vaccine itself is not always effective. I would check titers and then skip it if I were you. If tetanus is low, you could get this booster by itself, instead of the triple whammy. There were only 3 reported cases in the U.S., and no deaths, from diptheria between 2000 and 2007. I think its been pretty much irradicated int he U.S. Pertussis is bacterial, so if your child is on Azith, they are protected from it.

Our PBS station isn't running it, and I haven't had time to weed through their web site to figure out who to call. But its finally available on Netflix, for those who have it! You can't get the DVD, but you can play it "instantly" on your computer, or on your tv if you have Roku. We watched it last night and I cried. It does a great job of highlighting the ridiculousness of the "controversy" over Lyme and the effect its having on so many people. I can see why many PBS stations aren't airing it!

I forgot to put suncreen on my hands and got a sunburn last Wednesday while on Doxy. I finished the course on Tuesday and am off abx until we get my Western Blot results back. But the sunburn is still going strong - it itches now and is developing little bumps on the skin where its burned (not blisters, I don't think). I started wearing gloves to cover it while outside, so I know I haven't continued to burn it, but its not going away. Has anyone else had this experience? DH doesn't think it looks like a normal sunburn and thinks I should call the doctor, but I keep thinking its just a sunburn, it will subside. Does it just take longer to heal when you're on doxy?

My DAN doc gave me this years ago when I was going through treatment for mercury poisoning. It made me itch all over, so I stopped taking it within a few days. I thought at the time it was an allergic reaction, but now I wonder. I just did 3 weeks of doxy to see if we can provoke an immune response for a Western Blot. About 1 1/2 weeks into it, I started itching all over. Very interesting...

Michael, you were right on the money! This is exactly what was prescribed. He started the doxy today - now we just wait to see if they find anything in that tick.

Here are the Lyme bands explained, just fyi: Western Blot Bands description: 9 cross-reactive for Borrellia 12 specific for Bb 18 unknown 20 cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb 28 unknown 30 unknown; probably an outer surface protein; common in European and one California strain 31 outer surface protein A (OspA), specific for Bb 34 outer surface protein B (OspB); specific for Bb 35 specific for Bb 37 specific for Bb 38 cross-reactive for Bb 39 is a major protein of Bb flagellin; specific for Bb 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis) 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein 60 cross reactive for all Borrellia 66 cross-reactive for all Borrelia, common in all bacteria 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93 unknown, probably the same protein in band 83, just migrates differently in some patients

Fantastic! Thanks for posting!! I've bookmarked it - I'm sure I will end up sharing it in the near future.

Wonderful Vickie. This brought tears to my eyes - loved the music choice!

I've read that some researchers think canker sores may be an "over-reaction" to streptococcus bacteria. Did you get her checked for strep? AT the same time, what you're describing sounds like herxing - it can be so hard to tell!

First, a red ring IS a bullseye rash! What is that doctor talking about?! Igenex was expensive - $65 per disease to test the tick. So $65 to test just for borellia, $325 to test for Borellia, Bartonella, Erlichia, Richettsia, and Babesia. Our county in CA charges $25, but I'm guessing they only look for borellia and we didn't feel very confident about sending the tick to them. But if you want to go that route, I would Google the name of your county and "health department" and go from there. DH has not seen the doctor yet. He'll see her tomorrow and I will post the outcome. I'm thinking about going to the appointment with him. IMHO, your mom should get on antibiotics asap. The bullseye rash where she was bitten is worrisome. Do you have an LLMD? They may have specific appointments for people recently bitten, but not yet ill, so less expensive than a full work-up on someone who's already very sick. My dh's appt tomorrow is $165 versus $600 and insurance will cover much of it.

Thanks to everyone for the input!! I took the tick into Igenex this morning and we're doing the full workup on it (Lyme and all coinfections) - dh just wants to know and I don't blame him. We'll have results back in 1 - 2 weeks. I also stopped by the LLMD's office and it turns out they have "recent tick bite" appointments which are less expensive than the full blown history/exam/lab workup you would go through if you were really sick already. So he's going in on Wed and it sounds like they will prescribe abx. So I think we've done everything we can do. The silver lining of this is it's made us both fully realize how important tick bite prevention/protection is. DH was hiking in shorts yesterday because he thought it was safe on the paved trail. Now we know better.

I don't think you are grasping at straws. I don't know much about Babesia, but it couldn't hurt to discuss your suspicions with the LLMD. I don't know for sure, but I don't think doxy is used for Babesia. I'd think it would be better to try treating the Babesia now, than going through cancer treatments which are much harder on the body that abx, only to find out it was Lyme/Babesia after all. Glad to hear your dad is feeling a bit better!

I don't know of a Lyme-lit hematologist, but wanted to suggest that ILADS might be able to refer you, if there is such a thing. I'm really sorry about your dad. I hope you are able to find help for him soon and get him on the road to recovery.

My husband went on a hike today and toward the end found a tick attached to his leg. Luckily, he is reading Cure Unknown right now, so he saved the tick. He said the county (San Mateo in CA) would test it for $25, but I don't know if they'll only look for borellia? Also, its county government, so we're not sure how much confidence we have in the answer. Does anyone know how much Igenex charges and whether they look for borellia plus coinfections? I could drive the tick to them tomorrow, as they are 20 minutes from school. Also, should he just go on antibiotics right away to be safe? If so, what? How can one antibiotic protect him if he's been exposed to several diseases? We've got two sick pups in our house already, don't need a third!

Band 39 is very specific for Borrelia (Lyme) and Bells Palsy is common symptom. I'm not sure who told you your daughter doesn't have Lyme, but from her test results and that symptom alone, I can't understand how they came to that conclusion. They probably just don't know that much about Lyme. I would get her to a reputable LLMD immediately!

Too funny! I did this recently too. Our teacher sent home an email about the class community-service project, saying we would be putting on a bake sale to raise money for PANDAS (yes, she capitalized it!). My heart skipped a beat, and I couldn't believe they were going to raise money for Alex's disorder! But of course she meant the PANDAS that the rest of the planet knows about. So when I told my son, I was very careful to say, "Your class is raising money for panda BEARS!" Sometimes I feel like I'm living on a different plain of existence.

It does sounds like a herx, but keep your doctor apprised of serious symptoms, ie depression and fainting. Don't forget the basics of detox - flushing the body out with LOTS of water (adding a lemon is good for detox) and exercise every day. Our LLMD recently added Burbur for detox when my son started herxing with Cipro - he was already taking several things for detox, but she felt he needed more. Sounds like you are on the right path and your son knows this intuitively.

I'm so sorry. You'll all be in my prayers!