Suzan

Angela, for my dd who was 7 and similar in size when she started her lyme treatment, she began on 250mg of zith a day. But she was also started on 1500mg of amoxicillin, flagyl pulse, nystatin, diflucan and probiotics. Maybe your LLMD wanted to start off slowly to avoid any unnecessary herxing? My dd had already been on 250 mg of zithromax daily for pandas diagnosis for a year before her lyme diagnosis. You might ask your LLMD about his/her thoughts on the three phase approach where you treat with three antibiotics that all target different phases of the bacteria all at once. Susan

I don't know about levoquin but I am sorry about your sister. Is she open to looking more into lyme by seeing another doctor? If not, it's hard to press anyone into looking into it until they are ready but it's hard to watch I know. Susan

I am so sorry for the loss of your father. I am glad to hear you are doing so well and your dd too although this recent flare is upsetting I know. I hope things quiet down soon. Susan

We are right at the same point with the 3 pills and I'm not liking what I see either. She does seem to be having trouble thinking. She can't take DMSA at all because she has seizures. Dr. K recommends cilantro as well. Have you tried that? I don't know this is a hard one. I told her to start taking epsom salt baths and sauna's every day. I guess I'll see how she's doing after this weekend. I'll have increased efforts around it and let you know how she is doing. I'm also giving her ALA and NAC which should help with detox but I don't know if it will specifically bind mercury. I don't know what she is dumping which is part of the trouble. Susan

My medical expenses have been over the required % for the past three years for my family. I keep all receipts for any portion of medical, dental, prescriptions, supplements and mileage (any hotel rooms, food, plane or train costs, etc. needed when you travel for medical appts too). It's true, that the supplements need to be recommended by the doctor, which at this point, I'm considering almost all as recommended by the LLMD. Susan

Yes, I think you are right, it's a problem with false negative not false positive. I'm not sure we use the best lab and you do have to preserve the urine from light, etc. My LLMD almost did not test because she was sure she had a KPU issue and did not want the negative test to deter her. But she had never treated one for KPU and was cautious. Susan

My dd's KPU test came back high normal. I know the test is unreliable. But her normal test result leads me to believe she does not have the genetic disorder but that the condition was spured on by lyme. But this is complete speculation. I've asked the same question to the others about how will I know if I can stop the KPU treatment or not. I was horribly confused about KPU and whether we should do the treatment in the absence of a positive test. However, I was convinced on some level that it was affecting her. Today is day 5 I think with 3 CORE pills. She is showing signs of stres. More whiney and unhappy, demanding and overall ill where yesterday she was not. I am sure it is from the CORE treatment, that she is starting to dump more heavy metals and if I increase her detox and keep at it, I will see another improvement soon. I'm just rambling at this point. But I do understand your confusion. I can't begin to say I really understand it myself at this point. I still wonder if it affects me but I have not tried the treatment yet. I can say that I feel we are on the right path for her. Susan

I will need go to through her files to see if I can find it. I don't know if it was a glutathione test directly or the fact that other things were high (or low) and implied a glutathione issue. At the time (this was in 2008) we were working a lot with Great Plains and the OAT test and stool testing, so maybe it was from that. I will try to remember to look through the notes. Susan

Prior to learning about KPU, she was not responding to lyme treatment. She really had very little improvement or change (good or bad) in over 6 months. I saved this list of KPU symptoms that my dd8 fits (below). She also fit the profile with low glutathione levels and other mitocondrial issues (I'm pretty sure I'm remembering correctly that this appears in KPU). For me, it was an Ah Ha moment when I read about it. I felt certain it fit her profile and explained a lot of what I have been seeing. Since starting Core, she has started responding with some difficult stuff like rashes, skin eruptions, anger, stress but best of all, she is now remembering her dreams and she is doing much better in school. She seems to be growing and just looks better overall. dd8's symptoms at times: Light / sound intolerance Pale skin Environmental and food allergies Poor breakfast appetite Emotional liability Explosive anger Attention deficit / ADHD Poor dream recall Anorexia Thin fine hair Anal itch Stress intolerant Difficulty sleeping

Thanks! Good article. I'm sending it to my friend who's adhd/ocd son now has 4 documented cases of strep with increased symptoms. I'm desperate to get her to call our doc's. Susan

For Bartonella, my old LLMD used VEGF as something to watch for. My VEGF was elevated and my doc suspected bartonella for me. I am retesting soon to see where it stands. It is also a marker for some cancer so it's a good one to watch if elevated. I don't know if it's used in kids. My llmd only ran it for me. From the Lyme Disease Solution: "There is one test that may be useful in screening patients suspected of being infected with Bartonella. This test may also be particularly useful in the follow-up of patients with Bartonella/ BLO. This blood test is called “vascular endothelial growth factor” (VEGF). This test measures a substance that is produced by the Bartonella microbe in order to facilitate its entry into the body tissues it likes to inhabit. Elevated levels of VEGF often (but not exclusively) mean that a patient is infected with Bartonella. By monitoring VEGF levels during the course of treatment, physicians can monitor the progress of treatment (antibiotics). When VEGF levels return to normal, it generally means that the antibiotics have been successful and can be discontinued. The VEGF test is available from standard commercial laboratories. "

For us, our LLMD didn't think the valtrex would help with HHV6 but I did notice an improvement with dd10 on it. I THINK she was IgG positive. Wendy, how long do you take the Engstol for? dd8 has been on it for 3 months I think and I am wondering if that is enough. I am thinking I should try dd10. I've been giving her garlic supplements, andrographis, reservatrol and cats claw so she might have enough viral coverage from that but Engstol seems so good for viruses. Susan

I think I would tend to think it's from the CORE increase, just based on what I've seen at our house with each increase. We have not experienced fevers yet but dd8 rarely spikes a fever. We just increased to 3 CORE a day after so I expect to see something happening soon. Her lymph drainage has improved so something is working there with detox. I am so sorry he is not feeling well and I totally know how you feel about questioning whether sick or KPU. No matter what, I hope he is feeling better soon!! Susan

I have not had any luck with the quercetin but I only have been taking 500 mg. Maybe that is why. I can't bare to give dd10 3 more big pills a day. What brand do you use and how big are the pills? The one I have, the pills are pretty big. Susan

We now use benadryl every night to try to lower the overall load. dd8 uses allegra during the day, dd10 does OK on zyrtec. I like the nasal sprays like flonase but my kids won't do them. We also use OTC allergy eye drops (Naphcon-A) and those are really great. My kids don't tic though as a general rule so I can't say how we did in that regard. I think lyme can increase allergies. dd10 and I are doing allergy shots to see if they will help. 1 1/2 years into it, no changes yet. I'm ready to stop but trying to keep going and hopefully get something out of it. Susan

Yes, it is. There are other conditions that can cause rining but if the doc's can't figure out what is wrong, it could lyme. My dd10 and myself both have had rining in our ears that has gotten better with treatemnt. Susan

My dd was positive for HHV6 and due to symptoms, we decided to treat with valtrex. I think it helped clear the virus to help with her overall load. It was a worthwhile part of her healing process IMHO. susan

Originally I was on zithromax, amoxicillin and flagyl. Now I have replaced amox. with the doxy. The doxy works much better for me than the amox. The flagyl is used 1 x a week as a cyst buster. The zithromax and the doxy hit the lyme at it's other two life stages to try to hit it from all directions.

That is awesome! I noticed a difference right away too on doxy but also other abx. Then I had some herxing and reaction to it later so don't get too discouraged if you end up feeling crummy for a while. Just remember how you feel now and that you are on the right path.

I know it's used for lyme. Not sure about the bartonella....

Whoa we are in the thick of it now with dd8. Every day now she has another pimple lesion. Today her tummy hurts, her ankle hurts. She is in misery. I told her "I'm sorry, I will cut back on the KPU treatment." She said "No, I want to keep going. I can handle it." She is ready to get better. I am just amazed at how much this pill is moving things for her. She took an epsom salt bath and got in the sauna. The lymph node is getting better. One of the lumps is gone and now there is only one left.

Hi there, glad you made it over here! I hope you will find some support and information. I hope you end up really liking your LLMD. I don't have any information for any other LLMD's in your area but maybe someone will PM you if they know of a doc's name.... But Dr. Ann Corson is the best Ped LLMD I hear and isn't she in PA? If so, that's where I'd go if I was closer. Susan

Nancy, That was my experience with dd8 when I read the symptoms. 2 weeks after starting CORE treatment, not even full dose, she started waking up and telling me about her dreams. It was so cool. She did test in the normal range for KPU but we decided to treat anyway due to the overwhelming symptoms. This was her list from the symptoms list Light / sound / intolerance Pale skin / Environmental and food allergies Poor breakfast appetite Emotional liability Explosive anger Attention deficit / ADHD Poor dream recall anorexia skin eruptions, fungal infections, Thin fine hair Anal itch/ Stress intolerant Difficulty sleeping

LLM, I totally agree! First I thought it was her seizures, then I thought she was her gluten intolerance, then I thought it was sensory processing disorder, then pandas, then lyme, then kpu and viruses. I hope this is it that will help resolve it all. With each one, she improved and then went back to her previous norm. You and I are an interesting comparison between KPU then lyme or lyme then KPU. Since dd8 came back KPU negative but responding to treatment and I have lyme, I'm assuming she does not have puloria. I hope that is a correct assumption since I don't plan on continuing the treatment after this appears to resolve. I wonder if I should be doing anything else there to be sure?! Susan

Hi Kathy, I'm not sure if this is what you mean but for us and sorry if you know all this already but we were all diagnosed with lyme (me and my two daughters) and probably bartonella. My older dd and I started our meds and herxed and symptoms morphed and got better on many levels, basically what I expected from treatment. For my 8 yr old, she never really herxed and never really changed any of her symptoms even though she was on a really good protocol for lyme. In trying to figure out why, I came across KPU and found that she fit that symptoms list very well. Dr. Klinghardt says (forgive my huge paraphrase) that lots of lyme sufferers can develop KPU (pyroluria) which is basically a severe zinc deficiency where heavy metals have replaced the zinc in your body. Also, our neurologist does say that viruses can get stuck and not get cleared properly and can cause all sorts of symptoms and problems. It can be hard to get well with these things in your body. As far as I know my dd does not have any official immune deficiency and I hope that once she replenishes her zinc, her body will start to work properly and she can finally process the lyme and get well. I personally am assuming that the lyme is the underlying cause that is creating the environment within the body to become sensitive and not work properly. But maybe the others will have some better or more interesting ideas! Susan