momaine

If it were ME, I would either switch back to the Augmentin or do both. I have done something similar and told Dr. B about it later and he was fine with the fact that I used my experience to make a decision that would help my dd. I am not positive, but I'm pretty sure that I've read that Augmentin or Ammox is better than Zith for Lyme. My dd, who has Lyme, could never get off Augmentin when she was only diagnosed PANDAS. I have a story to relate to you that you might find interesting. I started 100mg of doxy bid two weeks ago for Lyme. After two weeks I was supposed to get an increase in dose to 200mg bid but the doctor was out till Monday when I called on Thursday. Being the impatient person that I am, I decided to take Augmentin from another family members old prescription (I know, bad) to see if it did anything. I was planning to take 3 days worth and see if there was a herx. 12 hours after the first dose, I woke in pain. EVERY joint and muscle in my body hurt and after a second dose, I continued to get worse all day. I didn't take anymore. I just took two Aleve and went to bed. BUT, Today, I woke and I walked down the stairs putting one foot in front of the other and only hanging on the railing for the first time in a year and a half. Because of the pain in my heels, I usually hang on the railing with my right hand, push against the wall with my left hand to take some weight off my feet, and take baby steps, one step at a time, down the stairs, in excruciating pain. Once I get moving, it isn't as bad. My head feels clearer too. Like the feeling of having stuffing around my eyes is lessened. Yay for Augmentin!

So my questions are: 1) Did your kiddos ASO titers ever drop?2) My dd never had elevated strep titers to begin with. She has now been diagnosed with LYME/Bartonella, a year into PANDAS treatment that did not resolve all issues. I do wonder if somehow, her autoimmunity has to do with Lyme rather than Strep. She has had sinus infections which were likley strep, but none diagnosed until she'd had PANDAS symtptoms for over 3 years already. (OR OMG, this just came to me....Dr. J said that my dd was positive for Lupus in the intial test and requires more testing that will be done on May 3rd. Maybe her autoimmune markers are for the Lupus and not strep? I haven't really gone down that road mentally, but it just came to me that that is a possibility) I know of at least three families that I mentioned above who have issues with gluten/dairy--Do others as well? Myself-GF/DF; son-GF; Shae-multiple food issues. About the same time that PANDAS symptoms began, dd began having sensitivities to dairy. It caused her to have excess phlegm which ran down her throat post nasal, and gave her stomach aches. Since beginning antibiotic treatment, she tolerates dairy much better. 3) Have you seen severe raging with the Lymes? Dd rages when her OCD is particularly severe, out of complete frustration. 4) Have you seen other Neurological issues? vocal and motor tics, milk maid grip, severe ADD at her worst times. 5) What tests should I ask the ID doctor to run tomorrow? Should I make sure these tests are done by IgeneX lab vs someone else? I'd do a western blot and complete co-infection panel through Igenex AND 6) Will monthly IVIg and all the abx screw up the test results? You can call Igenex lab and ask them. I can't remember for sure, but my dd has had IVIG every 8 weeks for the last 10 months and we still did that testing. I just can't remember at what point it was....I am thinking it was 7 weeks after IVIG and Dr. J thought that was good. Long enough post for now. Thanks everyone-I know I can learn a lot from all of you. I'm sorry you are finding yourself here again. A lot of people are finding Lyme as the root cause of autoimmune issues. It's a long road, but our Lyme dr. believes he can get my dd well, and I have to trust that at this point. We're 10 weeks into Lyme treatment and its still very difficult. Employing lots of things to help her body detoxify to help with the herxing. Best of luck to you!

In the book, "The Lyme Disease Solution," it is recommended that people with LYme Disease follow an inflammation diet, or one that omits foods that are knows to cause inflammation and to include foods that tend to help with inflammation. There were a lot of recommendations but the main thing was to avoid sugar, simple carbohydrates, and milk products and well as to include things like almonds, and flax seed, and organic meats, etc.. It had a lot of suggestions as to food choices. I downloaded the book from Amazon on my laptop's free version of Kindle. I like it because I can search with keywords, etc. My dd (and I) has cut down on sugar a lot but she is not eating a strict diet. She has enough issues in her life and to try to make her stick to a diet like that would feel like adding insult to injury. She struggles enough already. I do try to add things in a way that she won't really notice, like I make her favorite homemade granola and add flax seed, almonds, sunflower seeds, to it and she loves it on yogurt.

Since starting Lyme treatment, my dd gets lyme rashes regularly. They dont' itch though and they are not raised. They don't last long either, maybe ten minutes tops. They come out when she is in a hot shower (and now she rubs epsom salts on her body to help it come out) and they vary in color. MOstly red dots, all conncted but three times she's had purple legs (bruised color) with white spots with red centers. Today while she was at school she texted me a pic of her hand and it had a white circle with a red spot in the middle and she asked if it was a lyme rash. I said it looked like one and she said she gets them on her hands regularly now. We're doing more for detox now that we started out and I'm wondering if that is helping the toxins to exit through her skin more frequently?

This is going to sound pathetic, but honestly, I have become so good at scanning what I want to see, that I didn't even notice what it was all about. I have been irritated with that add at the top of the page, getting in my way! I never even read it. I went and made a donation. It's not as much as I'd like to give, but this forum has been instrumental in our lives and I want to give back too. I've made a small donation now and despite the fact that we're on the road to the poor house, as most of the people on this forum are, I hope that we are in a better spot to give more in the future. Thank you to Sheila and everyone else who plays a part in keeping this wonderful forum going. It has truly been a life saver.

Do you know off the top of your head what they use to treat Ehrilichiosis? (sp)

If I were you, with those symptoms in my child, I would beg, steal, or borrow the money to travel to see Dr. J or another LLMD that is recommended by ILADS. He CAN get well. Lyme treatment is not an easy road to travel by far, but what are the alternatives? Without antibiotic treatment that my dd has had since her PANDAS and now LYme diagnosis, I am fairly certain she would be in a mental institution.

My dd takes Minocycline and I think its from the same family as Doxy, but you might want to look that up. She is 14.

The vets in our area are finding a lot of Ehrlichiosis in horses. Interesting.

My dd is a PANDAS/Lyme kid and she is revisiting a facial motor tic now that she is herxing.

Egads, I hope this herx my dd is in doesn't last for six months! We are 11 weeks into lyme treatment and 5 weeks into a significant herx. It is so frustrating to not see more improvement. I am quite confident is is a huge herx though as she keeps having Lyme rashes regularly and now more often since I introduced some things to help with Detox. Does anyone else's child have Lyme rashes regularly? Almost every time my dd has a really hot shower (now with epsom salts) (couple times a week) she breaks out in a lyme rash. IT doesn't last long, maybe 5 minutes and then its gone. But it significant and covers both legs from her toes to the tops of both legs. Somestimes it looks like mini bulls eye rashes and other times it is just all red, all connected together. Sometimes her skin turns purple, almost bruised looking around the red area. Then five minutes later its back to normal. It's really weird. It does make me think we're on the right track though.

I'm in the same boat. I couldn't decide if it was my brain making connections to Lyme because of my dd's diagnosis or if all my random symtpoms are truly from Lyme and not just old age. My symptoms are, Plantar Fasciitis (no change in 1.5 years and 3 cortisone shots later), short term memory loss, my thermostat is broken...I can't get warm, and most recently, joint pain that came on out of nowhere and sometimes radiates from my ankle to my knee and also in my elbows, mostly. Plus my toes fall asleep and get all tingly and I get these pains in my muscles that feel like someone is sticking a needle into me. (seems like there are more symtpoms, but I can't remember what they are right now)...oh yeah, I just read about this and didn't know it was a lyme symptom, but I get electric shocks all the time. Strong ones, that hurt. I did Igenex testing recently, but not through a Lyme doc. My results were negative, but with a positive 31 on both IgG and IgM as well as 41 IND and 45, I think. The 31 is Lyme specific. A dr. who is not a lyme specialist has started me on 100mg of Doxy BID based on my symptoms and I'm feeling a bit worse just a few days into it. It is not a dose that is typcially high enough for Lyme but if my stomach handles it okay, he'll raise it in a couple of weeks. Meanwhile, I'll see a lyme specialist and see what she has to say. I'm interested to know what she'll think. Am I crazy and just getting old or could it be Lyme. I'll let you know. I'm tired of everything hurting. (I edited my test results because 41 was IND, not positive, as well as 5. I mistakenly wrote positive.)

A year ago when first seen by Dr. B, my dd was diagnosed with a sinus infection. It was due to his questioning that we came to udnerstand that she couldn't rememeber when she didn't have post nasal drip or phlegm running downt he back of her throat. Dr. B had her begin to use a Netipot two or three times per day and also to use Musinex as needed. For a WHOLE year we could not get her off the Munisex or the NEtipot for more than a few days at a time. THe phlegm would just come back in full force. She would get sinus infections because she didn't have proper drainage, I believe. Well, dd has been being treated for Lyme now for just over two months and I just realized that it has been a good month since she has had to use either Musinex or the Netipot. She is clear of phglem for the first time in a year. I just read somewhere on the web that pepole with lyme disease sometimes suffer from Sinusitis issues. I didn't realize it was related. I can't say for sure that there is a connection, but it seems awfully coincidental.

Kara, Thank you so much for posting such a detailed over view of your visit with Dr. H. I'm looking forward to my visit on the 20th.

looking foward to it!

Thanks for sharing that. Dr. Jones is an amazing man and I can't even begin to understand those who stand against what he does. I can't wrap my mind around their closed mindedness.

I made an executive decision this morning and I too am going to pay Dr. H a visit for myself. (My Igenex came back similar to my dd's, with some IND, one positive that was lyme specific.) It's much closer to me too. I spoke with her office. First visit is $475 for an hour and a half. Follow ups are $165 for half an hour. The office says she is good about returning phone calls and emails. I got an apt. in just a couple of weeks.

Lyme Mom, Do you by chance have more information (web site I could read) about the band 31 not showing up for a year? Thanks.

Yes, THE Dr. J from New Haven, CT. I have to say though, despite the drive and the cost, I am so glad we went to Dr. J. It just feels really good to be in his hands. I'm sure there are other competent doctors, but I know that he knows what he is doing.

I just wanted to tell you that Dr. J gave me her name as someone to use for myself and my older dd. If he recommended her, I'd say she's probably pretty good. Let me know how it goes. I haven't made an apt. yet for myself.

So glad to read your good news! Has it been a bumpy three months?

I love Dr. Jones! I wanted to let you know before you are in the middle of a terrible herx that you feel like you can't handle, that his office thinks its a good idea to use natural things to help with the herxing but they don't make suggestions as to what they are. One of the office workers did suggest we see a Naturopath to help with that. I've learned a lot on the forum, but I think I am going to take dd to a Naturopath to make sure I'm not mixing things that shouldn't be mixed or giving them at innapropriate times. My dd improved the first month and really struggled with herxing the second month of treatment. We stopped all antibiotics for two days at one point to make sure it was herxing and to give her body a break. She improved tremendously with the break so we felt confident it was a herx and now with the supplements we are using, she is improving again. I would make the strong suggestion that you learn all you can about helping detoxify the body to prevent herxing. I wish I felt knowledgable to give you information, but I don't. I did read "The Lyme Disease Solition" which has many ideas of which we have used some.

My dd doesn't want to bathe but I had read in "The Lyme Disease Solution" that it was also a good idea to brush your skin with a brush to brush to remove dead skin and open up pores to allow toxins to pass out. We combined these ideas and I had my dd rub epsom salts on her skin with a facecloth while she showers. The epsom salt is rough and would also help remove dead skin. On all three occasions that she did this, it was followed with a lyme rash, which is the toxins exiting the body through the skin. Two of the times it was two days after Tindamax and she has had those rashes two days after Tindamax on a regular basis, so I didn't know if the epsom salt had helped or not. But the last time she did it was two days after her last rash (which was four days after Tindamax) and she got the rash again. It comes quickly, and leaves just as quickly. Dr. J has seen a picture of it and assured me it was from die off.

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I still read the forum once every week or two. Most of the time I find that someone else has already said what I would have said, so I don't post. My dd too, has now been diagnosed with Lyme after a year of PANDAS treatment (multiple hd ivig and antibioitcs) did not get her to 100%. I read the Lyme forum more often now, but don't participate as often as I did when I had no idea what was wrong or how to fix it. Dd has been on Lyme treatment for about7 weeks now. She is struggling with the herxing but I do feel like we are on the right path. She has had 4 lyme rashes as a result of die off. We are one of the few who is continuing with IVIG and Lyme treatment. It's been a long road to figure this all out. I'm tired and sad. I wish I could say we weren't here as often because my dd is well, but that is not the case yet. I will certainly come back and let you know how she is doing as she continues with treatment.