lfran

Wow, I may ask for an increased dose, then. He is 92 pounds, on 300 mg once per day (Capsules are 300 mg. Maybe there are other forumulations to get to 400). But, he is also on two other abx, so maybe that's why his dosage is lower than what you guys are on.

Which abx are you on? Strange as it may seem, I am sure that my DS10's anxiety is made worse by amoxicillin. I'm pretty sure I can track his anxiety starting to starting amox. When we finally took him off amox it got better very quickly. Switched him to omnicef and the anxiety (extremely severe, but only at night) is GONE. Other son also had a bad reaction to amox, so there may be something in my family's genetic makeup with that particular abx. I know it seems odd, but with two kids showing this, I am covinced. quote name='AmySLP' timestamp='1317373325' post='122258'] My worst fear has come true. My 7 y/o daughter's tics are essentially non-exisitent & now she has some extreme fears and compulsions. These are begining to affect her functioning, as she is avoiding many activities because of fear or the time spent on the compulsatory behavior. She fell into exacerbation 1 month ago with severe emotional lability & with a switch in ABX, that is under control. But now the anxiety and compulsions are emerging. My daughter's PANDAS has always been primarily tics and choreiform movements. For the last few days, I have not seen any tics. I Switched her back to zithromax & started Bactim (Dr. B prescribed this prior to our Disney trip) but I was afraid of the possible herxing with our trip and then school beginning. She had been taking augentin XS as a prophylaxis. We are on this new combo for only 4 days. My husband has been researching IVIG (we have never considered it an option or necessary before). We have an appt with Dr. B on Oct. 20th. We have not seen an LLMD yet for the Erlichia & Bartonella. Anyone else ever seen tics or OCD/anxiety dissipate, with one replacing the other. Thanks, Amy

Our immunologist said pretty much the same thing re: IgG and IgE food testing.

He's already on it, in a pill form. But it was just prescribed for my younger son for sinusitis, at a higher dose than my DS10 (Lyme/bartonella) so I was wondering about lyme dosages. Do you know how many mgs are in your 4 ml? Thanks!

Anyone here on acyclovir? If so, can you tell me why and if it is helping? Thx

Can those of you on omnicef post dosages and weights? I'd really appreciate it. Thanks.

You're welcome. I just thought it was interesting, because DS10 would have been a definite postive by European standards. It seems band 58 is much more common in a European strain (b. afzelli) than in the strain that is more common in the US

You can deduct medical expenses and mileage on your 1040 but only for the amounts that are greater than 7.5% of your AGI. Totally stinks. (You can deduct health insurance premiums, if they are not paid for by your employer). Supplements are only deductible when prescribed/recommended by an MD, I think.

Sorry - there seemed to be something wrong with the original link. Try this one. It is really a wonderful article (IMHO!) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/

I really like this published paper. The authors review and compare the various laboratory rules for postive lyme diagnosis in Europe and give % specificity and % sensitivity for the various combinations. http://jcm.asm.org/c.../full/38/6/2097 If you look at table 10, you will see the "rules" for the labs as well as the author's suggested rules, based on their analyses. For instance, you can see that a 2-band positive of p58 and p41 together have a specificity of 94% (only 6% false positive rate) which is extremely good. If I'm reading this right. Anyone want to comment?

One more thing. Igenex doesn't care who orders their tests, as long as it is a medical professional. I went to my chiropractor at first, and there is even something you can have the medical practictioner sign for igenex so that igenex will send the results directly to you. So you don't have to go to an LLMD for that -- just find someone willing to sign the paperwork for you. Second, your DD has a lot more positive bands than my son does. However, both your DD and my DS have band 58 positive, which in Europe is considered very significant (they have a strain of lyme there that is called b. afzelli (rather than b. burgforferi) that is very specific for P58. Here is a link about many European laboratories, http://jcm.asm.org/cgi/content/full/38/6/2097 If you look at table 10, you will see the "rules" for the labs as well as the author's suggested rules, based on their analyses. You can see that a 2-band positive of p58 and p41 together have a specificity of 94% (only 6% false positive rate) which is extremely good. (Sensitivity is the false negative rate.) You can look at the other bands that your DD has. Maybe this is the proof you (or your husband) need.

Hi Eljomom. I know it is hard to know what to do. I have read a lot of your posts, and am/have been in a very similar position. A basically "happy" kid with mainly tics and anxiety, and only low level compulsions. Negative western blot, told not to pursue lyme by our PANDAS doc. BUT...I did anyway. And here is why. First, although DS's western blot was CDC and Igenex negative, he did have band 58 and band 41 positive and when I started looking into it, it seemed that if we were in Europe, that would be enough to declare him positive in Europe from at least some European labs. Also, he did test positive on the lyme urine test, so that helped. BUT the real reason is, I was not comfortable with IVIG and PEX for him, and what I wanted to try was stronger antibiotics (which it sounds like is what you want to try) and an LLMD will prescribe that, even if a PANDAS doc won't. (Since you say you have begged for stronger abx and aren't getting them). And my son IS getting better. Even the upswing of tics last week with the change of abx are getting better. Also, it would have been much less pathologizing to do this treatment with my son when he was younger. I would start sooner rather than later. And if you can possibly teach her to swallow pills, that will help so much -- much easier and less pathologizing and better tasting than swallowing tons of liquid medicines. I looked up an old post of yours to see your DD's igenex results. They seem pretty lyme-ey to me. And a lot of the LLMDs will do some appts at phone consults, after getting your child started, so again less doctor visits and less for the kids to be involved. I will post more later. I still think you should treat for Lyme, since it is basically the same treatment you want for PANDAS anyway. (PS, did you ever get the last PM I sent you on 9/17? The system says that you didn't).

You might want to take a look at this site. I went and heard them speak about thyroid issues and they were very comprehensive. They also have a very thorough literature review on Lyme, which is how I found them. http://aitrk.holtorfmed.com/thyroid-disorders.html

Thanks, Sheila99. Just sent you a PM.

Hi all. Could use some perspective. DS10 has been on lyme treatment for 4 months, bartonella tx for 3 months. Since that time, many things have improved. Mood and behavior, huge improvement. Cognitive abilities and concentration, huge improvement. Compulsions, now pretty low. Anxiety was high, but just switched abx one week ago and now anxiety seems on its way out. But, with the switch in abx (and/or dental work that happened at about the same time), his tics have increased to almost one every 4 seconds. He is shaking and jerking his head CONSTANTLY, followed by a more complicated movement every few minutes. He has been this high before, with larger motor movements, but this time it seems particularly bad (but then, it always does, doesn't it). He may also be PANDAS. For years, he had very high ASO and DNASE levels, although when last tested (about 3 months ago, they were normal). Family is all strep carriers, and younger brother is sick right now (but doesn't seem to be strep). Any thoughts? Is this a herx? Is he on the right path? If a herx, can anyone share detox suggestions for a 10 year old boy, about 90 pounds? He also has some methylation issues, but haven't started dealing with them yet. It's hard to stay the course when you see your kid like this, but I don't know that stopping is going to make anything better. Thanks. Having a disease where the treatment protocol is you get worse before you get better is pretty bad.

I spent years not being able to return to sleep once I was awakened. Turned out I was hypothyroid, which can really mess with your sleeping. When I got that adjusted, I was able to a) sleep through the night and return to sleep once awakened, even if up to help a child. It's an easy test, and easy to "fix". It is very common in women post-childbearing. Getting that addressed changed my life. The "standard" ranges of up to 4.0 as being normal are not accepted by many specialists, who consider up to 2.0 to be normal and over 2.0 as potentially requiring treatment. Just a thought, to help other sleep-deprived moms.

You are in my thoughts and prayers. It is unconscionable that these side effects were not told to you. I was put on 30 mg prednisone for 5 days last year for tendinitis and I weighed about 135 at the time! And I also experienced frequent urination, etc. My physical therapist was very concerned when she heard about my dosage -- she thought it was very high. And I was angry at my doc for not telling me about side effects and he made no plans to taper me -- fortunately I knew about tapering and got a tapering plan from a different MD. I am wishing your son a speedy and uneventful recovery. How old is he?

Honestly, right now, not much. Lots of things are better, but tics are really high. On several abx (including rifampin) and b vitamins, epsom salt baths, and oat bran tablets (instead of cholestyramine, which I am scared of because I took it when a young adult with the very bad side effect of depression for me). No one recommended the oat bran, just thought of it myself -- hope it's an okay thing!

You can call Igenex and ask them about specific tests and whether or not antibiotics are okay. After you get your results, you can even call on a Monday or Tuesday and talk to the lab director (Dr. Harris) about your results. He does that often -- you just have to ask. My son took the urine dot blot while on antibiotics --- many llmds specifically recommend to be on antibiotics for this test. That showed up positive for lyme -- they capture the shed antigen in the urine. They suggest doing three urine captures at $70 a pop -- we did two and were positive on one and negative on the other. But that was positive for lyme according to the lab. They suggest three because it can be hit or miss as to whether a particular urine sample will have the antigen -- but for $210, it's not an expensive test (as those things go) and that was our smoking gun. We did the new coinfection panel too and he was on abx at the time. All was negative except Bartonella antibodies. Just sent in for a follow-up test this week after 3 months on rifampin (anti-bartonella abx). So abx are okay for all of these, as far as I know. But call Igenex and ask -- it takes a couple of weeks to get results back, and I know you are in a place now that you want answers, so I would move forward with the testing while you wait for the LLMD appt. If you get postitives, then you will have reassurance in your decision to go forward. If you get negatives but trust the LLMD and the LLMD thinks it your child is clinically postive for lyme or bart or others, then you can weigh that info as best you can. Best of luck. Most of us have been there. I for one am extremely glad we did the testing, even though it was all out of pocket and hurt financially. I know this is hard. We tried various things for years with no real improvement. We finally bit the bullet and went forward -- I kept thinking that if I had started him on lyme protocol when he was 8 (he's 10 now), then it would all be behind us and the me of now would be thanking the me of then. So....the me of 2013 is going to thank the me of 2011 (at least, she better! )

Just sent you a PM!

Just sent you a Private Message (PM). Thanks!

Wow -- I have been hesitant to test myself for fear of what I would find -- but with all these moms coming up positive, maybe I should. I know I had bartonella as a teen -- I tested positive for cat scratch fever (b. henselae), but neither my mother nor I remember if I was actually treated for it! No real symptoms myself, just low level anxiety. Can you post what B vitamins you are using? We need to do the same for DS10, but I thought some b complex weren't good (too much folic acid, etc) and would love more info. Thanks. Also, can you post the detox protocol? Many thanks.

Extreme exhaustion can be caused by hypothyroidism. It certainly was for me. You may want to have that tested the next time you have a blood draw. You want a measure of at least TSH, free T3 and free T4.

The NIH put out a white paper on PANDAS within the last year or so. Not Lyme, but since a lot of the treatment is similar, maybe you could go under that umbrella.

We are also paying out of pockt for everything. Upon a recommendation from someone else on this board, I have found that Costco has the best prices for meds. If you need azithromycin, for instance, it is about $400 at CVS drugstores and $120 at costco for a month's supply (at my DS10's dosage, at any rate). Also, if you want liver function tests and no one will order them, you can try privatemdlabs.com and look for liver function profile. It costs around $50, but at least you can order them yourself! They have a lot of other tests, too -- I have never used them, but I am glad to know they are there! Don't move in a big hurry. We live in Ontario as well and our family Dr will not accept DD9's IgeneX results for IND Lyme and positive Bart, and neither will our pediatrician. I was told that seeing a LLMD is quite the same as taking the family inheritance and spending it on an alternative cure in Mexico. No one will even help us with requisitions for liver testing. The Canadian ELISA test came back negative (they didn't test for Bart), so that is the end of that, despite her whole host of symptoms, which have been chalked up to anxiety. We have to pay out of pocket for everything. Good earlier idea about the rewards VISA card - I must apply. The good thing is that our LLMD is 1.5 hours away.