lfran
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Posts posted by lfran
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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
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Our immunologist said pretty much the same thing re: IgG and IgE food testing.
Very interesting. We have to do food allergy testing soon here with Ian (allergic to dairy) and I am going to be asking her a lot of questions about some of this stuff too. Let us know what you find out!
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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!
65 lbs - 4 ml twice a day. Unfortunately, that means it has to be liquid, not a pill, which is twice as expensive. Grr...
Is that where you're headed?
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Anyone here on acyclovir? If so, can you tell me why and if it is helping? Thx
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Can those of you on omnicef post dosages and weights? I'd really appreciate it. Thanks.
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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
Well of course, I had to pull out my WB.
On my IgG, band 58 and 41 are both positive (and 31 and 34 IND) IgM band 18, band 41, band 58, all positive, 31, 39, 83-93 IND.
My Bartonella came back positive sky high,
but my IgG/IgM's of bands 58 and 41 (and the 18) positive was called negative by Igenex,
so turned in a Lyme blood PCR (results not in my hand)
but I know in my gut that PCR is positive, because I got a bill from it from Igenex with a funny
printout saying it is their legal job to report it, or something.
My very long winded way of saying thank you, I found this interesting!
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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.
My husband has recently started Lyme treatment, so all of this is new to us including ALL the out of pocket expenses.
Any information on how all of you deal with all of the EXPENSES would be helpful.
For example:
Visit to the lyme doctor, not covered by insurance.
All the supplements, can you write this expense off on taxes??
Can you write off mileage for doctor visits??
Compounding Pharmacy charges, not covered.
THANKS!!
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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?
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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?
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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.
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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).
I have been reading all the recent posts about quickly treating pandas. I did not. I did not know of pandas when my dd started to not want to eat anything that someone had touched at around 4-5 years of age. Germaphobe. I did not know of pandas when my dd also had (has) major issues with clothing, shoes, socks, underwear, armpits of shirts, etc. I did not know to look at her MANY illnesses and correlate them with her ocd-ish stuff that I chalked up to quirks, difficult kid, youngest (ie., spoiled/babied...). When the 3 tics started, I did not know to link it to illness. When I didn't take her in for 104 fevers over the course of over 2 years, I did not know about pandas. When there was a one-day high fever, and within a week of it, an explosion of tics, head to toe, increased separation anxiety, more ocd, I thought we had a sudden onset of Tourette's. My brother has Tourette's. My father in law had rheumatic fever. I did not know of pandas.
After a few months of thinking my kid that I thought had a few transient tics had suddenly just taken a turn for the worse and developed Tourette's, I hit a link on pandas. I researched. I tried the pediatrician. I finally found one to test titers, 5 months later, and they were nonexistant. Not pandas, I was told. I found the forum. I had phone consult with dr. T. I had a 6 month wait for a neuro. at Childrens. I had a 3 month wait for Dr. L.
We started abx with Dr. L, while waiting on Cunningham's tests. She as not certain about pandas. DD sits still in her office for 2 minutes she is seen. We get worse on Augmentin. Is this now NOT pandas? we wonder. or were we just too late? too late to have the wonderful relief of abx? We switch to zithromax....100 mg/day. Not even treatment dose. We ask about dosage at 3 consecutive appointments. We are told "it should be enough." We are told to NOT pay attention to the tics...they are the last thing to go, and they are no big deal...easy to treat with drugs. we tested Lyme. "negative" but a number of +s and IND"s. Many say "pursue Lyme." We are told by pandas doc to let it go, and if we see an LLMD, we would no longer be seen by this pandas doc. We question testing other infections, immune complexes, co-infections. "No point in it...won't be helpful," we are told. We are told we may try steroids, but then when we ask about testing other infections first, are sent to Infectious Disease. Wasted time. We ask why kids who are debilitated get a shot at "normalcy" with IVIG/PEX, etc., while kids who tic, head to toe, and have ocd, and can't draw anymore, but are "Happy" as our pandas doc has told us, do not get a chance to live without the symptoms. We are told to pull tonsils. No diagnosed strep. Tonsils are small. We are PITAND. We NEVER are symptom-free. We do not EVER have remission of symptoms since it all started. WE jump from these tics to those tics, these compulsions to those compulsions.
I am hopeless. I am paralyzed. I don't know if it's just too late. Is it? Seriously here. Are we what Dr. Swedo calls "chronic" pandas? I wish she would reply to an e-mail. I wish our pandas doc would reply to a call or e-mail. I wish I didn't have to play doctor and lead. I wish I could clearly link dd's symptoms to specific illness. I wish I knew if she tics more from yeast, mold, allergies, hidden strep in tonsils.....yet we can't find out. I wish we had more money to go from doctor to doctor. I wish it wouldn't affect my child by doing so, making her think she's "abnormal." Is there any chance a steroid at this point in her illness (tics unremitting for over 18 months, ocd for who knows how long...started prior).
I can't take it anymore. I stayed at AWANA tonight and watched her scratch her face...evenly on both sides, of course...then tap tap tap her face after every time she touches it. Smelling her fingers. Smelling everything. Blinking. Eye rolling. Scrunching nose. Hopping. Blowing on her hands. Dots all over her papers from tapping after every letter. The list goes on. But she appears "happy." So no treatment. Tourette's it is, I suppose. And OCD. How sad. So so sad.
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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
OMG! I think my daughter is suffering from thyroid problems and she seems to cycle from Hypo to hyper. She sometimes tests for high TSH levels, but T3 & T4 are usually normal- but her symptoms are thyroidian (I just made that word up, but I like it). Her doc has given me a referral to an endo... However, we've been through this before, so I'm worried the endo will not treat because the labs are not bad enough, instead of considering her symptoms.
I found a good article that I've not thoroughly gone through, but I was debating whether to share it here, because I thought this was a separate issue from her PANDAS. There is another mom on here, who was undx'd PANDAS as a teenager who was helped with thyroid medication even though her thyroid labs were not out of whack. I don't know why I have so much trouble remembering who she is...she has been very helpful to me.
I was wondering if medication could be causing the thyroid problem (I think my daughter was neg for the antibody associated w/ hashimotos) and found this...
http://www.thyroidmanager.org/Chapter5/5a-frame.htm
I see that rifampin affects the thyroid and wonder if that is why it helped so much.
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Thanks, Sheila99.
Just sent you a PM.
We saw Dr. Thomas Lin in Irvine. I found him through this forum. It was Dr. Lin who dx'd DD9 with Pandas and continued her on the ABX Zithromax, while DD9's Kaiser SoCa dr. at the time did not believe it was Pandas.
Dr. Thomas Lin info:Irvine Kids` MD, 4634 Barranca Parkway, Irvine, CA 92604
Telephone: 949-681-0777
Fax: 949-654-7668
Email: autismmd@cox.net
Website: www.irvinekidsmd.com
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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.
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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.
Norcal Mom- I hear you. My DS goes right back to sleep but, like you, I don't and it is killing me, too.
EAMom- The lamictal never had any effect on his sleep issues. He's been night waking since this whole PANDAS thing started and its been near 3yrs now. He was on 100mg of lamictal for 14 months and we saw no changes. The only thing that helped was IVIG. He went about 5 wks sleeping in his own bed and not waking. He had some sort of minor illness in early Aug w/ fever(neg cultures and titers) and then we started the lamictal wean and now he's back to night waking.
He shows a pattern after the next step down. Three days after reduction, he gets irritible and starts the night waking. After about 3-4 days of irritibility, it slowly subsides, as does the night waking. Then, unfortunately, its time to lower the dose again and it starts all over. However, this time, the irritibility lasted 1.5wks. We are going to increase the time between dosage decreases to let him get back to his post IVIG baseline for a while longer before the next decrease and see how that works.
I'm not really certain what NAC is. I'll google it. Thanks for the suggestion.
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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?
Saga continues...around 3 pm my son suddenly had a headache that quickly became very bad. He was pale and told me that he was having trouble breathing. We were at the mall and I just grabbed him and ran to the ER on advice of my pediatrician. He improved in the hospital but his x rays showed a possible enlarged heart. Apparently steroids can cause congestive heart failure and although he does not have other symptoms of that we have to follow up for monitoring with our pediatrician. Praying that the heart issue is really just the angle of the x ray but we will certainly be following up.
For those that asked...my son weighed 53 lbs and the prescription was for 30 mg for 7 days, then 20 mg for 7 days, 10 mg for 7 and then 10 mg every other day for 7 days. He was examined by this doctor recently. He has gained about 4 lbs in 2 weeks and his face is huge. He's going to the bathroom 6-7 times a night and it's very cloudy - possible indication of sugar spillage. I was concerned about the frequent urination and called my ped who sort of freaked out. Then I called our pandas doc who was also concerned about the urination and told me to have glucose checked. I had already researchd side effects of steroids by this time and knew it could raise blood sugar significantly as well as blood pressure. My son's blood pressure was very high tonight as well.
So I'm still terrified beyond belief and angry that none of theses side effects were mentoned when the steroids we so casually prescribed. I realize that steroids are miracle drugs for many but these are very serious side effects and everyone should carefully weigh the risks against the potential benefits. At least be informed...I wish I had been.
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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!
Ifran - and I'm sure he'll thank all of you!
What supplements are you using these days? thx
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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!
)Have been waiting for pandas doc to send orders for Igenex testing for over a month. Now, it turns out, I will be filling out the form and sending to them, so doctor can check test boxes and sign, then send back.
DD7 was tested in November, and was "negative" on the basic lyme panel. But there were IND's on lyme specific bands, and some ='s too. Was told to leave it alone, it's negative.
DD is still not well. STILL ticcing all the time, with periods of horrible ticcing, still some ocd, etc. I'm not sold on lyme, but before proceeding further with anything else immune-modulating, I want to try to rule it out. We have not yet tested for co-infections, and that bothers me.
So can anyone tell me which tests would be best to run (assuming I haven't robbed any banks lately)? Definitely want to rule out Bartonella, etc. Is it 5090 (Complete co-infection panel) or 5095 (NEW complete co-infection panel)?
Also, she was on low doze zithromax for 8 months, then switched to Keflex for strep infection a little over a month ago...still on Keflex. Is it a problem to test for these while on anbibiotics?
Is there any point in doing the 188,189 (IgG & IgM Western Blot) again? Her Igenex CD 57 was really high. Her IFA was equivocal (?)
Thanks.
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Just sent you a PM!
I agree with LLM, best to check with the Dr., and also at some point we just have to push through.
I was told by our LLMD that we just have to push through with my dd6. Left to my own devices, in our past history, when trying to do a parasite protocol, other things with her, I couldn't hang with the die off, so I would quit.
Currently I am giving her B12, and I hate it, it makes her hyper, I can see 'mean-ness' too, but I am pushing through, because it is part of what she needs.
Occasional ibuprofen, a drainage rememdy, epsom salt cream, keeping her active (exercise) are some things to help.
Personally, I just started Bartonella treatment, and I can tell you, it is not easy nor fun. Weird sensations in the body, I am having anxiety ramped up, and some Tony Soprano thoughts race through my head with some choice swear words. Hard to deal with other people.
I also am doing detox stuff, but know I need to push through. Get through each day the best I can. Easier as an adult in a sense, because I have a rational side that comes with age, that tells me 'Just keep your mouth shut. Don't speak, you will regret it.'
The children don't have this.
(Feel free to remind me of this myself when my own young daughter starts her Bartonella treatment.)
Hang in there Wanda---remember all the positives, and know this can take awhile (remind me of this, too.)
P.S.
Wanted to add I am drinking 8 oz. glasses of water 8 times a day (first time in my life) and cut out any obvious sugar items--- this is helping. I find my body actually wants all the water. If you can get her to drink a lot, this might help.
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Just sent you a Private Message (PM). Thanks!
My 6-1/2 year boy old has chronic tics. We are thinking of having him see an orthodontist/tmj specialist to explore whether there could be any connection with his tics and possible tmj issues. Does anyone have any firsthand knowledge about the success or failure of this device?
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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.
Yep. I knew this already, when I clued into myself, with the symptoms, seeing my low CD57. (45)
We went to the LLMD today for my dd6 to start her treatment plan. I am happy how we are starting out- I guess I was expecting some crazy antibiotic regimen, not so- we are addressing her meth. pathway with specific B vitamins, as she has a defective gene that blocks this detox pathway, and her virual load is very high (from labcorp blood testing), we also had some Zyto testing today too (not from LLMD) which said viruses are the thing that need to be dealt with first, so script for Famvir, and also a parasite treatment, we have come up with stool and zyto tesing for that. He mentioned by correcting the meth. pathway and treating viruses, it will probably release metals. Keeping on Azithromycin for now, since it seems to keep bacteria at bay, she regresses off of it-
All reasonable dosing, slowly in steps, with a remedy for detox, and charcoal.
Feel good about that- back again in 6 weeks.
I got a copy of my Igenex, which I hadn't seen: multiple positive bands, on the lyme-y ones, and the bartonella testing came back at the highest range possible, a strong clear positive. I also did Zyto today , and Bartonella was the very first thing that came up for me that needs addressing.
I go back Friday for my own appt., in 2 days, to start. My first appt.
Funny bit:
LLMD said to me: So, you have anxiety?
Me: Uh, Yes!
LLMD: Okay, we treat the bartonella first.
Meanwhile, my husband is trying very hard to hold back a smirk, Dr. looks at him and said: Oh, and we make the husband happy! Very good, very good. (and they laugh big.)
Yeah, ha ha ha. Although I have had some doozy panic freak outs on poor husband as of late.
Holy Moly. Both of us herxing together. God help us.
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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.
Thanks guys! I really don't know what I would do without these forums. Our pediatrician initially said, "oh they
do that sometimes when they're not feeling well" about the tic (near constant facial grimace) and the sudden to the
day change in behavior! I love 'em but they had never even heard of PANDAS!
DD has tested negative for mycoplasma and lyme but I don't think she's been tested for staph or other stuff. She
has SUCH a hard time with the blood draws but I guess it's what we need to do to get her better! I am starting
to think that it's not just plain strep since she is SO unbelievably tired, she's sleeping right now. She sleeps
from 8pm to 7am with no problem but I picked her up from daycare today at 2:45 and she yawned all the way home so
I had her take a nap. It will not prevent her from going to sleep at 8 even though she is napping from 3:30 to 5:15.
If we let her skip the nap when she's tired, she will with certainty have a huge meltdown/rage. It seems to happen whenever she gets
too tired or hungry. These days she is eating a TON too, way more than usual. She is a tiny little thing but lately
is eating more than I do at a meal....Ham, mashed potatoes, mixed veggies, bread w/ butter...for example. She's not
a sweets girl so we don't usually do desserts but she will sometimes top that off with a piece of fruit and then
have a glass of soy milk before bed. These are good sized servings too.....now I'm starting to wonder if I should
cut back on the portions, oh I don't know, she's probably just having a growth spurt but now I'm analyzing everything!
We will consult with Dr. T this week. I think he's doing a great job for these kiddos but we've had a hard time getting
in touch with him and I'm also a little afraid of having to do more bloodwork....
Thanks again for your support and oh man I need to hear about kids that get better....even if it takes a while I can
deal with that but in the thick of it it's easy to think that we'll never have our sweet little one back!
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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.
Hi Everyone-
I am fighting my HMO to pay for our son's Lyme treatment. I know, I know, but its worth a try.
Does anyone know of any articles from the CDC that mention anything about cognitive and or mental disorders relating to Lyme I can use as evidence for my case? I have searched but could not find a thing. Their symptoms list is vague-doesn't go beyond the typical bullseye rash, fever, etc. Or is this part of their political agenda? Andrea
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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!
That's it, I'm moving to Canada.
:-) So wonderful to get the help and support you deserve :-)
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.
return to sleep once awakened, even if up to help a child.
)
Omnicef dosages
in PANS / PANDAS (Lyme included)
Posted
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.