Suzan

Thank you all, you are fantastic. I love this site and I am very grateful that I have you to bounce these things off of. Your experiences are invaluable. Doing my google research now to learn more and will probably have more questions later! Susan

Oh I forgot, dd10 still shows heavy metals being a problem. Mine are clearning up. He wants her to beef up detox efforts which we have gotten slack on. I'm reading up on Klinghardt's protocol to see if I want to add something else in for this. Susan

I have been trying it for cyst busting on myself. I only take it one day a week however. I herxed initially but now I don't notice anything. But I have not been taking it very long and it may be due to the lyme cycles. I have not tried it on my dd's yet. I don't have a doctor telling me how much to take so I'm just winging it based on what I learn here and there. I don't think we have bartonella at this point but I'm still unsure since we have never been officially tested. Susan

My wellness doctor uses kinesology and has tested that the kids don't need the Deseret Biological Lyme series any longer and I may only need 1 more month. He wants to do some lyme testing to see where we are in all that. Igenex recommends the 6050 panel which is almost $500 I think. This includes the IgG and IgM but also some other testing. Igenex said that if your body is still producing antibiodies then you could get a positive test IgG or IgM without active infection. Does that sound like I'm interpreting this right? I don't want to spend $1500 that I don't have on tests that won't help to know if the lyme is gone or not. My kids are doing very well, but they are not 100%. I have no idea how to know what is from lyme and what is from something else. dd9 may have some genetic abnormalities that she will just have to live with that are doing very well with treatment or may not be genetic and will get better with treatment. I am very happy with her progress. dd10 has had a huge setback from the recent strep so maybe her lyme is gone and she's dealing with PITANDS now. But she is slowly improving while not on abx which has never happened before. She still has a lot of anxiety and OCD but still much improvied. No more pain which was one if her primary lyme symptoms. I still get very tired and have this buzzing in my head and shoulder blade. I attribute this completely to lyme but my doc says not necessarily. My joint pain is controlled by my diet so I'm not sure what that means either. I drop things all the time and I'm still feeling overwhelmed. But overall, I am feeling a lot better. I just had hoped to feel fantastic by the time I was done with lyme treatment, a cure all. How much is damage caused by lyme but now needs to heal on it's own. Have I said all this before? I feel like I"m repeating myself, LOL. We are still taking cats claw. I'm taking grapefruit seed extract and no longer react to it. I'm starting dd10 on GSE tomorrow to see if she has any reaction. By now I'm rambling. Do you have any thoughts for me? I don't want to take abx any more. But I don't want to stop treatment too quickly. Frankly, I have no idea what to do next.

Hi and thanks for your update. Can you tell me which type of doctor is giving you the prescription for your medical expenses for tax purposes? I am interested in getting our house evaluated for mold too as my wellness doc believes we are about to the end of our lyme treatment yet we aren't as well as I would have expected. I will need to continue down the lyme path or look at other possibilities as well. I thought of mold this morning as I had a funny smell from the washing machine and started wondering. I guess I need to check that out. We also still have the bat guano in our attic. We have sealed it off and don't go in there any more but I don't have the money to get my house sealed off for bats and to have the guano removed. If I could get it allowable on my taxes, that would help. Susan

This happened with my kids when they took amoxicillin. Our dentist said amox should not do that but I could see a direct connection. They had taken zithromax for years with no trouble. They are off amox now and their teeth (after a good cleaning) are fine again. I started using an ionic toothbrush and I think it worked very well, but this was after we stopped the meds so I can't say for sure. Scrubbing with baking soda and water was the best for trying to remove the stains ourselves. HUGS!

Hi, I'm sorry for everything you are going through! I wanted to mention that my daughter who is now 9 has a PVC. They discovered it when she was 5 during one of her surgeries. It developed some time during her 5th year. She was first diagnosed with PANDAS and now lyme. She has congenital lyme we are fairly certain. I am assuming the PVC was caused by lyme but I don't know that for sure. I am hoping it clears up with lyme treatment. She was on lympe protocol antibiotics for 2 years and is now taking natural treatment. Susan

The symptoms of mesaphonia seem familiar to me through my daughters and my symptoms that I now relate to lyme. My daughters have been diagnosed with PANDAS first and now lyme, as well as my diagnosis with lyme. We all have various symptoms of mesaphonia. Especially my youngest daughter who can't bear to hear others sing unless it's her idea first and is often triggered by the sound of her sisters voice or noises she makes including finger tapping, etc. I didn't even know it was called mesaphonia. I always attritubed it to what we were going through so yes, I believe others with these symptoms could have pandas or lyme or other pitands (pans??) issue. Susan

Lymemom... Thank you for your experience with the series! Our doc has us on it every three days but we've been on it longer than 2 months. I think I've been doing it for 5 months? It was very powerful at first but then I stopped noticing the herx. Maybe some of the lurking lyme could not be found by my immune system and now that things changed with being sick and the abx, the series is going after it again. I hope that is true. I'm glad to her that you feel it's beneficial and please keep me posted on how you do. Susan

We managed to get an appt with our neurologist who has treated the girls for lyme some in the past and gave dd10 her IVIG's. I'm glad we went and got dd10's reaction to strep and viruses documented. He respects our wellness doc and his vision for our treatment so he's interested in us continuing to see his protocol through for a while, not wanting to mess it up by intervening too soon. But he did say she needed glutathione cream to help with the methalation pathways (she's already on a bunch of zinc) so we are going to add that. Then, if this does not help her get past the symptoms from the strep exposure, he will put her back on antibiotics (zythromax) along with our natural treatment for a while to get her stabilized. That made me feel good that we can still get some medical support from him if we need it while continuing on this path. Susan

Thanks guys, SF Mom, reading up on those links tonight.... S&S, I have done cyst busting before but that was back when I felt like crud constantly so I expected to feel horrible. I did notice some good herxing with the GSE so it's got to be some of what is going on. I need to increase detox efforts for one thing. Saw our doc today and I'm feeling better, at least committed to keep hanging in there and trying but I will pay attention and to be sure it seems we are on the right path. Susan

After the past few weeks, I've become confused withour course of treatment. We moved to naturals and are using Deseret Biologicals homeopathic lyme treatment. Very powerful in the beginning but now we don't notice much. The doc says it's because there's not much lyme left to kill. But I started using grapefruit seed extract and that stirred everything up, I assume bursting some cysts. Then dd10 got sick with the flu and strep and I got a virus (we thought it was strep but culture was neg.) and now a horrible sinus infection. I've been on antibiotics twice in the past 2 weeks and now I feel horrible again. Close to the old days with past lyme symptoms. dd10 is pandasy from the strep with anxiety and unreasonable reactions and fears. In retrospect we noticed that she has been slowly backsliding since the end of January. I think the strep started coming back after we took her off the abx. I don't know if this means our naturals aren't working and we need abx or if we've just found some hidden lyme and we are herxing and the desered biologicals will start to go to work on it again. I can't afford a lyme doctor and our wellness doctor. I'd have to pick one or the other. Our wellness doc has helped us more than anyone so I don't want to quit going to him. So far, I'm going to hang in there and see what we can do without abx I guess but I am concerned. It's very hard to feel so good and go back so far. It almost feels like starting over, but not quite that bad. Good news in all of this is dd9 did not get sick. She is having "normal" lyme symptoms with twitchy eye lids and roving pain which I consider good since she never did have those symptoms before and it all came out as OCD and impulsiveness. She's improved the most between the three of us. Susan

Hello, your younger children sound very much like mine were. My children got lyme from me during childbirth or through breastmilk. I did not know I (we) had it until 2 years ago. They had issues from around 12 months old and we have had sensory processing dx, pandas, spectrum disorder, gluten intolerance. A LLMD will take the positive bands to heart and can give a clinical diagnosis if needed. My dd10 had negative tests at first and after 3 months of lyme treatment got a positive test. She had pain like your dd and sounds like her in all other ways you mention. My other dd had many conditions found with autism and sounds similar to your son. I believe there is a strong connection between autism and lyme. Both my children are doing very well now after almost 2 years of lyme treatment. My youngest dd9 especially is doing great after addressing her lyme and also methylation pathway issues. DD10 is currently struggling because she just had strep and the flu but hoping she will continue to improve back to how she was doing. I hope you do make an appt with an LLMD and that your dh will open to the possibility so you won't have any road blocks to finding out exactly what is going on. Searching for what was going on with my children helped diagnose myself. Was your WB through Igenex Lab? Susan

She was treated for pandas with zithromax for 2 years and has been in lyme treatment for 1.5 years (zithromax, flagyl, amoxicillin and now doing homeopathic treatment). She's had her PVC vor 4 or 5 years. It is not pounding for her but she says she can feel it. The main reason for seeing a cardiologist is to be sure there is not some other issue going on that would require treatment (I don't know what those are though.....)

Wow, HUGS! What a time you've had... Regarding the PVC's, my dd has them too. I assume they are lyme related and waiting for them to go away with treatment. So far no luck but I'll keep hoping. She was monitored by a heart specialist for a few years but they don't see her anymore since it's "just" a PVC. Susan

For us, IVIG did cause a herx afterwards (bad limb pain and inability to walk for a day). But it did help very much with her mental/emotional state. However, it did not last more than 3 weeks. I don't regret IVIG but I don't think it helped us long term. Susan

I ordered peremethrin off the internet (amazon.com I think). I have yet to use it. If I have this correct from my last research... Damminex tubes are tubes that you put around your yard and mice take the cotton that is soaked iwth peremethrin and make their nest in it and the ticks are killed but it does not harm the mice. I was going to make some with toilet paper tubes wrapped in duct tape and stuffed with soaked cotton. I have not done this yet either. Maybe this year I'll get it together. They say that if you kill the ticks at the mouse level, then they won't go on to jump on larger animals. We have deer in our area but they don't come inside our fence. Only mice and smaller animals (racoons, cats, etc.). SUsan

I wanted to give you cyber HUGS! I don't have the info you need but my heart goes out to you. I am a single mom to two girls with pandas/lyme and I have lyme and I know it's hard doing all this without support! I think I remember you from the pandas board but my memory isn't what it used to be! Susan

We aren't using the same protocol but our doc has us doing natural homeopathic (Deseret Lyme Series) and I have added Burhners Herbs too. It got us off antibiotics. We were doing very well until recently with things stirred up with strep and the flu and I think lack of detox (we are getting burned out from all the baths and foot baths our doc has us do). I hope this works for you. Keep us posted on how you do! Susan

I had tingling hands while sleeping and it resolved after about a year of lyme treatment.

OK, so a week later (tuesday), dd10 comes down wtih a cough and a fever (103+). Turns out she got the flu and strep. This is our first strep since we started daily 500mg of zith 3 years ago. She came off all abx the end of january to treat lyme with naturals. Now 3 months later she's got strep when it seems no one else has it in her school that I know of anyway. The good news is she's not reacting to it like PANDAS but she did get increased anxiety and has started having some trouble in school over the past two months. So now I'm wondering if she still has hidden strep and it took a litle while for it to come out. She's reacting to the tamiflu and is getting emotional and difficult and I can tell it's going to be a hard recoveray if I keep her on tamiflu. Last time she was on it (probably 3 years ago) it caused some sort of tourettes type symptoms. I'm not sure if I have the courage to keep her on it. Susan

I hate that lyme test! I'm ready for something reliable. My dd had IgG results, bands 31 and 34 were indeterminant. Band 41 was positive and IgM results - band 41 indeterminant. She had the most lyme symptoms of all three of us at the time of testing. After she took abx for a few months her test turned positive. If you feel you may have lyme, I would suggest finding an LLMD doc and get evaluated. I didn't think I had lyme in the beginning but when I put all the symptoms on paper, and wrote down everything that I had been saying was something else, it became more clear to me. Good luck! Susan

My doc likes to rotate them. Right now we are using Klaire Labs THER-BIOTIC COMPLETE. It's expensive but really good. I also use PB-8 and another that I get from his office (Total Probiotics). Susan

My dd had sensory issues, gluten intolerance, emotional liability, defiance, OCD, anxiety, limb/joint pain with periods of time of unexplained inability to walk. Her primary remaining symptom is anxiety with the other symptoms much less obvious and debilatating. Susan

My dd10's original Igenex test was negative IgG and IgM but due to her overwhelming symptoms, our LLMD agreed to treat. We treated for 3 months and then retested. By then her test had swung positive. These were her first results which were negative IgG results, bands 31 and 34 were indeterminant. Band 41 was positive. IgM results - band 41 indeterminant I can't find her 2nd results but they were close to being CDC positive. My results and my other dd had more IgM positive bands than IgG and our LLMD considered them active infection too. Good luck to you. I agree with the others, I would keep the LLMD appt with your results. Susan