Hopeny

I was told by our LLMD that Rifampin does not come in a liquid. We open the tablets and mix with a little water. Thanks, our LLMD wrote "suspension" on the script, but I am thinking CVS ,may compound it. I will go today and ask. Are there different brands?

We are switching to this combo for DD (liquid, she won't take tablets). For Augmentin I had asked for the Teva brand instead of Dr. R, but what brands are Ok for these 2? Thanks!

Let Your Voice Be Heard Urgent call to comment on Lyme Disease objectives to be added to Healthy People 2020 ILADS has submitted four objectives addressing chronic manifestations of Lyme disease to the U.S. Department of Health and Human Services (HHS) for inclusion in their Healthy People 2020. Healthy People 2020 is an ambitious, yet achievable, 10-year agenda that could improve the Nation’s health for individuals with Lyme disease. It is important that your voice be heard. This is time sensitive and we need your input today 11/7/2012. Please take a minute and fill out the form online by http://ilads.org/ilads_media/healthy-people-2012/?utm_medium=email&utm_campaign=Healthy+People+2020&utm_content=Healthy+People+2020+CID_5e61dedf47b57456efd6ba1760968c5b&utm_source=Ilads%20user%20email%20marketing%20campaign&utm_term=clicking%20here Your comments will be sent directly to HHS. The more of you that let your voice be heard, the more likely it is that the objectives listed below will be added to the US Department of Health and Human Services’ Healthy People 2020 objectives. ILADS Lyme Disease Objectives: 1. Increase the proportion of persons with acute disease who are timely and accurately diagnosed. 2. Decrease the proportion of persons with chronic manifestations of Lyme disease. 3. Increase the proportion of persons with chronic manifestations of LD who are timely and accurately diagnosed. 4. Reduce the number of persons with a history of Lyme disease with subjective symptoms severe enough to result in a substantial reduction in previous levels of occupational, educational, social, or personal activities. You can also send an email directly to Carter Blakey [hp2020@hhs.gov] at HHS. In your email please state that you support the ILADS Lyme Disease Objectives for inclusion in Healthy People 2020. About Healthy People For the past 30 years, Healthy People has been committed to improving the quality of our Nation’s health by producing a framework for public health prevention priorities and actions. Healthy People 2020 strives to: •Identify nationwide health improvement priorities. •Increase public awareness and understanding of the determinants of health, disease, and disability and the opportunities for progress. •Provide measurable objectives and goals that are applicable at the national, State, and local levels. •Engage multiple sectors to take actions to strengthen policies and improve practices that are driven by the best available evidence and knowledge. •Identify critical research, evaluation, and data collection needs. To view more information, go to: http://www.healthypeople.gov/2020/about/default.aspx

Teri I recently got DD8's full medical file including my note to the doctor from 2010 when she had her Lyme presentation which was misdiagnosed until Jan 2012. My notes mentioned outbreaks of rashes on her chest and behind her knees, which I wrote not sure if Exzcema but was unusally located and too many of them. DD also tested + for Ehrlicia, Anaplasmosis and Rocky Mountain Spotted Fever. I had forgotten about that symptom until I got the notes.

Personally Jennifer G I would take DD for a second cardiologist/pulmonologist opinion. Sorry I am not sure of your history, have you seen pulmonolgist/had pulmonary fxn test and chest xray? Also random question but does her nose seem drippy at all? During our Lyme misdiagnosis mess DD had a sinus infection that ped wrongly insisted was viral for 6 weeks, DD could not breath, pulmonologist said he thought drippy sinus causing the problem and finally got ped to rx zithromax which cleared the whole thing up. However now we know she has ehrilichia/rmsf and anaplasmosis which also cause all that pulmonary stuff so its hard to know what it was.

Thanks all for the responses. LLMD prefers Doxy/Rifampin but DD HATES Doxy and it is just so difficult with her to get her to take it I don't have the strength for it, plus there is a tiny part of me that says if she hates it so much maybe her body is telling us not to use it. Other issue is it does not cover strep, although I think Rifampin may. I think the suggestion of Zith/Rifampin and Augmentin as a backup is excellent and manageable. Mommaine thank you, the OCD aspect is worrisome, I had not heard it, I guess we will just have to manage and see. DD is 8, LLMD brought up Mino but says he does not want to use it in someone her age. @rowingmom, maybe it would be good to talk to your Dr if you want to use that combo again: "...the addition of rifabutin in patients stabilized on clarithromycin therapy slowly decreased the clarithromycin area under the plasma concentration-time curve (AUC) and C(max) up to an average of 44% and 41%, respectively, at the end of 4 weeks of combination therapy. In patients stabilized on rifabutin therapy, the addition of clarithromycin significantly increased rifabutin AUC and C(max) after the first dose. After 4 weeks, average increases of 99% and 69%, respectively, were reported.Some experts recommend that this combination be avoided since it may result in decreased efficacy of the macrolide and increased rifamycin toxicity (e.g, neutropenia, uveitis)." I am scared for a backslide and excited to see if this helps. DD has been doing so well but hip pain has returned and yesterday LLMD palpated her joints and every single one was tender, had not been like that before. When he moved away from the joints there was no tenderness. Ugh

Just chiming in that my Lyme/PANDAS/Myco daughter was put on high dose Amox and basically almost went psychotic. A first 4 week course for strep/lyme worked well and then we upped it high dose because she worsened as soon as she went off the first round of amox. there were a couple of moments when I though I would have to hospitalize her, in one of many scary moments she told me she was afraid her clothes would hurt her. she also developed suicidal obsessions. Yikes. We did five days of Doxycycline for Lyme & co and then Augmentin and Biaxin combo (even though I know Augmentin has amox in it for some reason this combo worked) brought her back. I would also suggest that whatever doc you end up with you ask to send bloodwork to Igenex for Lyme, which can also cause/compound these symptoms. Also check Mycoplasma IGG and IGM. Not sure why but many of these infections seem to go hand in hand. Psych put my DD on Zoloft too but she overheated/shook so we took her off, thankfull antibiotics have been enough. Good luck, you will get your daughter back!

We have decided to treat DD8 for Bart, she tests negative but has neuropsych symptoms and foot sole pain. Also her ongoing leg pain is improved but still there. She also has PANDAS/Myco and very low immunity to Strep (immune to 3 of 14 strains as I recall) so our PANDAS Dr has had her on a regimine of Augmentin/Biaxin which has worked well on PANDAS symptoms and has reduced but not eliminated Lyme. Our PANDAS dr recommended adding bactrim for Lyme, however our LLMD prefers Rifampin and said Bactrim has some buildup in the bone in children. Biaxin interacts badly with Rifampin, so he and I discussed Azith/Rifampin or Augmentin/Azith/Rifampin. We see PANDAS doc next week so have not discussed this with him yet. Could anyone give me feedback on this combo/effectiveness/ etc? Thanks in advance

Yes SF mom that is the strain I was referring to. My friends son really had what I would call a miraculous response to Doxy, after almost two years of heartache, I hope this can help others

I am just updating, not advocating either way, that DD had the flu shot a few weeks ago with no discernible impact. She has never really seemed to have major vax reactions though, except to one MMR when she was older and I can't remember exactly what happened, just that it was bad, and I suspect it was in the time she acquired Lyme but I am not sure. Hope everyone stays healthy no matter what the choice.

I am wondering if it might make sense in your daughter's case to bring her to Mayo clinic or the like for a full work up - immune,etc the whole 9 yards. I know that they are probably not PANDAS friendly, and normally a major medical center is the furthest thing from my mind, but as you are already treating for PANDAS you wouldn't really need them to buy into that anyway. It just seems like your DD has so many complicated and serious symptoms perhaps there is something else at work here....

Thanks everyone. We are on day 8 of no power so this is my first login to my computer. i am going to ask for DD to have another thyroid workup. I can try the alka seltzer gold but she refuses even to take motrin so it may be a tough sell. What's interesting is that in what I now know as one of the Lyme years DD had a voracious appetite for sugar, i was actually starting to worry about diabetes as she was literally begging for sweets. When we started amox/doxy the sugar craving went away, so I attribute that to Lyme which I have heard from others too. I do give her some sugar stuff (donuts etc) but try to limit to a couple of times a week. What I am seeing is she is either not hungry and/or gets full from very little. When this happened before on Aug/biax she did not have any significant weight loss but it was only a 2 month period. Now she is on this and we may add bactrim until at least May/June so I will try everything.

His sister had a Myco P issue but I am not sure if they ever tested him, he does have high mold though. He was on Azith and Cefdinir for 15 months, and a bunch of other stuff for Babs and Bart, Mepron, Rifampin, milk thistle, armetisin, etc etc. I will ask her about the Myco. I was going to mention the parasites to her but then I checked the dates with full moon and it did not coincide. I did find some articles that talked about the Japanese names borrelia and recurring fever that to a T described what he had, and the Doxy worked so unbelievable well for it - after going through so much, and so many different meds and herbs, it was amazing how well it worked. Now if only I could find the same magic for my DD

I will do that, thank you. We had her tested earlier this year when arrogant rheumatologist at top NYC hospital insisted it was a thyroid problem, not Lyme, despite CDC positive test, and everything came back normal. It seems to correlate with being on this combo but I will definitely check to see.

I'll add that my DS is more heat sensitive since starting Zoloft, also; this is a pretty well-documented side effect in some of the population. So, especially during a hot, humid summer, DS always has a water bottle in hand, and we don't spend excessive periods doing high-energy exercise is high temperatures. Yes, I remember LLM's article and heartily agree that none of these interventions and/or therapies operate in isolation. So we need to be mindful and watchful of all the pieces as best we can. Reminding me about the methylation and the MTHFR mutations again, I think that's an angle that, in addition to keeping an eye on it with our kids, we need to be bringing that up with our docs and/or psychs who are potentially prescribing these meds. Several years ago, again on an IOCDF panel, Dr. Storch commented that kids with "comorbid" behavior profiles -- OCD combined with TS, ASD, Asperger's, General Anxiety, ODD, depression, etc. -- tend to respond better to lower doses of SSRIs. At the time, he wasn't even addressing PANDAS/PANs in this session for therapists and practitioners, and I remember being struck not only by this opinion and how compatible it seemed to be with PANDAS/PANs kids, but also by the chorus of "Oh yes!" and "I've seen that, too!" among the other doctors sitting in the audience in the room! Things that make you go "Hmmm:" Perhaps what Dr. Storch and company are seeing, at least at times, is a response to SSRI's by kids with methylation issues? Anyone want to run that up the flagpole with him and/or Dr. M., or know if they have ever considered this particular point? I've pretty much gotten the blank look when I have brought the mutation up, but I am thinking that the drs you mention may have better knowledge than mine have. If they are not aware of it it would be helpful for them to be made aware...

I checked the dates for this because I had read about parasites and it was not tied to full moon. Is that what you are thinking of?

My DD8 continues to recover from Lyme & co/PANDAS/Myco. Her PANDAS symptoms are all but gone. We are still battling Lyme & co pain. About 45 days into augmentin/biaxin combo she has lost her appetite. She has never been a big eater, but this is our second round of this combo which has been a miracle for her but it does seem to cause lack of appetite. Exactly the same thing happened before and when she switched to 60 days of Doxy her appetite came back, She does not have body image issues and actually worries about becoming too thin (not heading to BCH any time soon!) and I asked her and she does not feel her throat closing or anything, (with PANDAS in full force she did feel she was gagging on food), she just is not interested in food/not hungry. At this stage she has not lost major weight so I was just going to start supplementing with pediacare, but wanted to see if anyone had any suggestions to fire up the appetite. We are trying to keep sugar down because of Lyme. I do not want to take her off this combo because we are seeing amazing results. But I guess there will be a limit if this keeps up. Thanks.

I read a post on someone who had recurring flu like illness form Lyme, this is also known as tick recurring fever. Cannot recall which post so I started this thread. My friends DS8 had this from Lyme every 28 days on the button for 15 + months, fever, headache, lethargy etc. She was taking him to 3 top LLMD's and he was on an abx combo, she had been worried to try Doxy but after we did it I guess she got more comfortable. After 30 days of Doxy, the episodes are gone, it has been miraculous, he has some headaches now but that is it. She is continuing but wanted to share if your DC has these symptoms Doxy is well worth a try. Unf Doxy did not have such a miraculous effect for my DD but it seems to work well with these recurring fever type symptoms.

I am by no means an expert but my DD has one copy of 677T. LLM posted a great article on this once from I think a publication called the Nutmeg, anyway it described how there is an impact from the 677T mutation on serotonin. From what I have understood, people with this mutation do not process serotonin properly, and thus SSRI's need to be very carefully administered and monitored by someone who understands the effect of 677T. My DD was on tiny dose of Zoloft, I think 12.5 MG, she started super scary overheating and came home from playing tennis telling me her body would not stop shaking. I got very worried about serotonin syndrome, although psych said she did not think this was it, and we took her off. We have had good success with just abx and vitamin D3, and we are starting methylation soon. My understanding was that if you are using methylation and SSRI's it can also be very dangerous. I also was quite upset to learn that Biaxin which DD takes interacts with Zoloft, the psych knew this but didn't mention to me until we had the problem, she did not think it was significant I guess but perhaps that is what caused the problem it is hard to know. If your child needs it though would be best to work with someone who understands the mutation and the impact. And personally also do your own research on the internet about drug interactions, I wished I had.

DD8 is in month 6 of Lyme & co treatment, PANS, Myco etc. So grateful that she is doing quite well. Today she woke up with a headache, complained of visual disturbances, stomach ache, threw up abx, and now has pain down one leg. Her knee is slightly swollen, have never noticed that before. DD3 also threw up (I am not feeling too well myself) so I am thinking stomach virus, but would that cause a Lyme pain flare? She has not had shooting pain this bad in months. The slightly swollen knee worries me. We see LLMD on Monday anyway but curious any ideas. She will not take motrin.

In a nutshell we started off with a Lyme dx for my DD8 in Jan of 2012, and made an appt with Dr B too as a check in the box for PANDAS because DD had an elevated ASO titer (by the time we got to him it was in May). She did not have tics or hit you over the head OCD, until you looked closely and realized she had numerous obsessions (one was wanting to die, ugh) and compulsions (ritualistic skin picking), perfection seeking etc. Psychiatrist at the time said she was not sure DD had OCD but thought she was depressed. She totally missed the boat. My sister read me the DSM criteria for OCD and I was like yep, got that etc. I originally thought OCD was hand washing etc but it turns out to manifest in multiple ways. I left Dr. B's office with two prescriptions, Augmentin and Biaxin, and while we have a long road with Lyme & Co, that was the day I started to get my daughter back. Thankfully due to the parents on this board, and not to the expert rheumatologist, psychiatrist and psychologist who misdiagnosed DD, I was able to have DD properly tested, evaluated and now in treatment with the right team of practicioners. I have read too that uncontrolled bowels can be a Lyme symptom, IMO it sounds like you need a thorough workup, from a PANS specialist (seems like you have one now), a Lyme literate MD who sends the tests to the correct lab and knows how to interpret results, and maybe a DAN. I know Dr. Sears (the son) put a recent post up about PANDAS so it sounds like he would be a good resource for you. I use the team approach because no one doctor has all the answers, and personally I will never put all my faith in one person again after the way my DD was totally misdiagnosed and has suffered needlessly because of one doctors ignorance/arrogance. I was totally overwhelmed in the beginning but began to be able to wrap my head around all of it a couple of months - have faith you are on the right path and be open minded as to what the treatment and illnesses are. Wishing you the best.

Just to echo everyone else spinal taps are not typically used for Lyme and are almost always negative. How old is your DD? If your child is very young I would consider Dr. J in CT, for a child that is maybe 8+ there are other choices

We are in NY so I have no specific references for you but my experience has been that there are very few Lyme literate pediatricians. What I have been (so thankfully) able to find after much searching is a compassionate pediatrician who is open minded and will work with DD's other treating doctors. The particular pediatrician we are seeing also has an MPH and I saw on her bio that she had done some stints in far reaching impoverished places. It turned out to be clues that she was more aware of these types of diseases and also a sign of her compassion. I also believe that Beth Maloney has a list of PANDAS doctors, but take it with a greain of salt. My former pediatrician is on that PANDAS list, but is totally Lyme illiterate and does not believe in chronic Lyme, and further his practice missed my DD's case and never suggested PANDAS, in fact when the first round of testing was done in that practice and me not knowing anything asked if she could have "strep in her blood", ASO was not even run. Good luck I know how difficult this is.

http://www.ilads.org/ilads_news/2012/robert-c-bransfield-md-the-psychoimmunology-of-lymetick-borne-diseases-and-its-association-with-neuropsychiatric-symptoms/ Robert C. Bransfield, MD – The Psychoimmunology of Lyme/Tick-Borne Diseases and its Association with Neuropsychiatric Symptoms

Just to add the name has been expanded to PANS to include non strep causes, which can also include Lyme & Mycoplasma. Essentially as I understand it these things cause an inflammation which can, for some kids, cause sudden OCD etc.