rowingmom

Herxing is so hard on kids. When we started continuous abx combos that included tindamax, DD11's herxing increased significantly and wouldn't quit. Before we added tindamax, she would herx within 2-3 days of combo changes but would gradually improve through the next 7-10 days and then remain at a good baseline until the next change. With daily tindamax this didn't happen. I think her body just wasn't able to detox from the continuous high level of die-off. Even though we were doing all the detoxing we could - lemon water a couple times daily, epsom salt baths daily, 150 billion probiotic cultures daily, psyllium supplements to keep the bowels moving, methylated versions of B vitamins, liposomal glutathione and lots of water to drink - she was unable to clear her system of the die-off toxins. And symptoms just kept getting worse. We didn't see real resolution of herxing until we started pulsing the tindamax combinations. We used 3 days on, 4 days off pulses. Following her excel chart I could see the initial herx on day 1 and 2, and then the decrease in die-off symptoms through the rest of the week until the next pulse. It was easier on her to herx through the weekend and then feel better for school. She didn't look forward to Fri-Sat, but understood that symptoms would be short-term. Her symptoms at the beginning of the pulses would never make it to the high levels they had reached after 2 weeks of continuous tindamax treatment, and that was easier on her too. Whether she could have pushed through continuous, high level die-off, IDK - our LLMD suggested pulsing as soon as she saw what was happening. Pulsing worked well for us and gave DD11's body the break to detox that it obviously needed. She reached her best baseline with this style of treatment using heavier abx (malarone, plaquinel, tindamax, minocycline, azithromycin). If herxing appears cyclic, while everything else remains constant - this could be an indication of the activity cycle of the organisms being killed off. His increase in energy level is very encouraging. Hang in there and do all you can to detox, I know you are doing your best.

I forgot to mention - we lived in Louisiana for 13 years (1987 - 2000). During that time our labrador retriever had two bull-eye rashes on the hairless skin of his stomach. Both my husband and I looked at it and said "Wow, a bulls-eye rash!" and didn't know to think further. Some biologists we are (fisheries biologists, can you blame us?) Two ACL replacements later, the dog lived to be 15 yo. I don't think lyme effects dogs as severely as it does people.

Who ran the Lyme test. Our daughter was negative on the overall test, but did have one positive and one indeterminate (there, but faintly) lyme-specific band. This was enough for our LLMD to diagnose her as being lyme positive. These bands could have only shown up with a lyme infection, nothing else. Because lyme tends to depress the immune system, tests don't often show up as blaringly positive.

Go to the top right hand corner and click on your name (frikfrak) to open the pull down menu. Choose "Personal messenger". Where are you located?

Dedee - good for you. Sometimes I feel like letting loose on my GP cousin who admits to never having heard of PANDAS. People need to wake up, and the process is rarely kind, I think.

Sorry, we were using 150mg BID and 150 billion probiotic cultures daily.

We had good luck using rifampin in various combinations with other abx to treat DD's bartonella - in total she was treated with it for 288 days. We did not see the herx reactions from it that we later saw with tindamax, but it did work well to resolve pain/psych issues. The only side effect we observed was darker-coloured urine (not red as others have reported), but all metabolic tests, CBC, CMP, liver panels, kidney tests remained within normal values. The thoughts of starting rifampin were scary, but like everything else I do to help DD11, I just closed my eyes, trusted our LLMD and leaped. Just keep running monthly assessments of organ function.

You need to google abx dosage vs efficacy for your DS and show it to him. If the dosage/timing is not sufficient he could be potentially creating resistance. It's hard for him at that age, when parents appear unknowing and unable to understand. The older I got, the smarter my parents got. I know I am heading downhill quickly in the eyes of our DS16.

It's too bad the author of the blog you mentioned hasn't enabled the comments. Doctors have no idea what goes on with chronic lyme infection, and won't until they find themselves infected. She needs to keep an eye on her baby. I had to laugh at her quote "Two of the three physicians do not charge me for their services, the third one takes insurance. I am unable to afford treatment otherwise. It is expensive on so many levels". Welcome to our world! She needs a link to this forum.

You are so right. You can not change a mind that doesn't want to be changed.

It was his interest and treatment of autism with long term antibiotics that got me. I had seen this link and a couple of others on his work 1.5 years ago. DD's autistic tendancies have gradually resolved with her long-term lyme/bartonella treatment. Of course he talks about the energy frequencies produced by these organisms, so will be dismissed as a quack. Definately something to think about though - for those of us who are into thinking (which includes everyone on this forum)! Thanks for the other links as well. No mindless googling for me this evening either!

When I first approached our trusted family doctor (also a family friend) of 30 years about the possibility of DD having a lyme infection, he talked down to me. He told me I was crazy to even think this may be a possibility. He wanted to treat her pain/psychiatric symptoms with ritalin, clonipin and a good spanking. I had trusted this doctor's opinion for 30 years. He treated my grandmother's congestive heart failure for 20 years, and kept her going until she was 98. I went with my gut, found that "thin slice" wanting and walked out. I was then stuck with the problem of having no help or support. No one in the family (neither my husband, my mother, my sister) thought I was working with a sound mind. I frantically searched for months and found the help that I needed, both here on the forum, with our LLMD and now with our new naturopath. It made me sick to walk out on our PCP, but if I hadn't trusted my gut (which by the way, I have lots more faith in) I'm not sure where DD would be now.

I think caprylic acid (also from coconut oil) is a good supplement for yeast. We also use garlic, curcumin, a fair amount of coconut oil with cooking and supplement with probiotics and fermented vegetables daily.

You are in the right place. Most of us have come to the decision that mainstream treatment was not working for our children, taken the leap, and found help with specialists that treat "outside the box". Unless you are extremely lucky, you will not find a mainstream doctor that accepts the treatment methods used by specialists mentioned on this forum. Please don't waste time trying to change minds. You need to help your child. Find a specialist in your area (let us know where you live and someone will chime in) and as mentioned above, test for viral and bacterial infection (including lyme and the co-infections) with ILADS accepted tests and with a doctor that interprets the results properly.

When DD11 was taking a pulsed combo (3 days on, 4 days off) of malarone, azith, plaquinel, minocycline and tindamax last winter, her ticcing and executive function were the best I had ever seen. It was the first time I did not see her tic at all. I had seen previous decreases in ticcing with biaxin/rifampin (LLMD thinks her PANS reactions are caused by bartonella), but not to this extent, and not for this long (3 months). It could have been due to the anti-inflammatory actions of the mino or azith, IDK. Unfortunately symptoms ramped up with the addition of grapefruit seed extract, and after several attempts to bring her back to baseline by switching combinations, ticcing was still a problem. We then went back to the previously mentioned combo and added curcumin (LifeExtension) (ticcing decreased) and then phosphatidyl choline (more decrease of ticcing). We then made the decision to wean off abx and cover infections with several herbal protocols (Buhner, Byron White, Zhang) while keeping the curcumin and phosphatidyl choline in place. She is holding her own after 1 month and ticcing has decreased to a very low level (a little in the evening that most people would not notice). At her worst she was having trouble reading because of an eye blinking/neck jerking tic and having trouble speaking due to vocal ticcing. I can say she is now back to the level of ticcing and executive function she had attained last winter on the combo.

I think bacteriophage are viral in nature. Perhaps antivirals would be more of a problem.

Glad to hear they are doing better, and that the worst seems to be over. I think you are right to test for e coli, it's nothing to play around with, and report the restaurant too since others seem to have been effected. DS16 felt badly over the weekend and threw up a couple of times, but in this case it was going around his lacrosse team. Fortunately I was opening the cottage, so missed the whole thing. You are a good mama!

The fact that your DS has been investigating his options means he is concerned. He is probably scared, and by telling you that you are "just over-reacting", is trying to alleviate his own fears. He would be happy (and dismiss his concerns) if you admitted to "over-reacting", but in this case you probably won't (and shouldn't). Just because you have had to discontinue abx doesn't mean you have to completely stop treatment. DD11 has stopped treatment for lyme/bart, but is still taking herbals, and will continue to do so for a long time. We are using a combination of Buhner's new bartonella protocol (he has added sida actua and houttuynia). He also recommends hawthorne for heart involvement. Zhang (lots of garlic and houttuynia), Byron-White (A-bart, A-L), along with oil of oregano and olive leaf extract. I have recently ordered a near-ir sauna to try to invoke a fever response. It will be a few weeks before we get it, but I can't help but think that fever may assist in eliminating some infection. She has been on the full dose Buhner protocol for 1 month now, I was using a lower dose while we were taking abx. She did have a herx reaction - very visable 3 days after implimentation of the full dose, and she has herxed (mostly emotional) with the addition of houttuynia and with each increase in the concentration of the houttuynia tea I am making her. Her ticcing and bone pain are now at an all time low. If it will last, I don't know, but we won't be giving up on this any time soon. Just my feeling that her immune system wasn't able to handle the infections before, and probably would relapse without support..

This is a good series of videos by Loren Cordain discussing leaky gut, lectins, molecular mimicry, adjuvents, and autoimmune reaction, all in relation to diet:

Grassfed ghee is a great source of butyrate! I buy it here: http://www.pureindianfoods.com/organic-grass-fed-ghee-s/4.htm[/url] It's a lot cheaper than making your own from grassfed organic butter ($$$). Another reason to eat fermented vegetables as well. It's easy: You just have to get past the idea that all food has to be sterilized and kept in the refridgerator. Just be careful if you have a histamine intolerance (perhaps linked to SIBO - small intestinal bacterial overgrowth) as fermented food contains a lot of histamines: http://chriskresser.com/headaches-hives-and-heartburn-could-histamine-be-the-cause

Wow! This reminds me of Carly Fleischmann. Nice bit of deductive reasoning on your daughter's part!

I agree. I think this forum is a great example of CrowdMed at work, only without the membership fee! Thanks to everyone here, I don't know where DD would be without all of your input.

Oh My Gosh, Holy Doodle, how did I miss that one? His last 2 books on herbal abx were great, the lyme one a little general and out of date if you take a look at his website. I just ordered the new one. Thanks.

I saw her talk on a video a while ago, and thought she might have some good ideas. Can you give us some hints as to the complete lifestyle change she recommends? Thanks!

I agree that if you feel something is amiss, you should see your doctor. I did 5 years ago for palpitations, falling hair, derealization, short-term memory loss, anxiety attacks, hotflashes. All tests, including holter monitor came back fine, but I didn't feel like me. Dr said it was all in my head and sent me to an endocrinologist. All these tests came back fine as well; he suggested beta-blockers. I left. Many years of googling later, the last 2.5 for lyme/bart, I have come to the conclusion that I probably have the same infections, and that stress sets off the symptoms. What has helped me may not help you. I have been trying to boost my immune system a little: - Terry Whals/paleo type diet - Low dose bioidentical progesterone cream (I'm at the point in my life where my ovaries are trying to squeeze every last little bit out, but I am not regular any more, so probably not producing the progesterone I should). This was a great help for most of my symptoms. If you try this be aware of initial estrogen symptoms as progesterone will displace estrogen from the estrogen receptors and put it back into circulation. - astragalus 3x/week (I over-did this initially, using it every day and ended up with systemic inflammation). This has been the only thing that has stopped my hair from falling out. Buhner suggests that it boosts the immune system, and it is one of the herbs he thinks is important for overcoming lyme, however he cautions it's overuse in chronic lyme. He is right on. - Oh, and don't forget exercise. Walking 1hr/day with my dogs and HIIT a couple times a week.