Hopeny

I know this is an unpopular view, and Dr B has suggested not to, but I am going ahead with the flu shot. I have now found out that in addition to all the other issues DD has an immune deficiency. My DD also has asthma and having Lyme along with PANDAS I need to really avoid steroids for her which means trying to make sure she doesnt't get sick. Before we found out that DD had asthma she did have the Flumist in kindergarted. After readng these boards I do wonder if that opened the Pandora's box we are now battling. My 3 year old has an active Lyme infection as compared to older DD's chronic case, in her case I will delay the vaccine until she has finsihed the course of abx. In her case she also has the same immune deficiency but much more severe, so they are advocating extra vaccines for her. I am really torn for her case.

I know this is an unpopular view, and Dr B has suggested not to, but I am going ahead with the flu shot. I have now found out that in addition to all the other issues DD has an immune deficiency. My DD also has asthma and having Lyme along with PANDAS I need to really avoid steroids for her which means trying to make sure she doesnt't get sick. Before we found out that DD had asthma she did have the Flumist in kindergarted. After readng these boards I do wonder if that opened the Pandora's box we are now battling. My 3 year old has an active Lyme infection as compared to older DD's chronic case, in her case I will delay the vaccine until she has finsihed the course of abx. In her case she also has the same immune deficiency but much more severe, so they are advocating extra vaccines for her. I am really torn for her case.

My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG. Mino is like Doxy, correct? Bill is the IVIG for Lyme or PANDAS? If Lyme, how man has your son had and have you seen results?

I completely agree to treat the bite. I understand Red if you live in an area where you are bitten frequently that this could pose difficulty, and maybe you do get some type of immunity from repeaated exposure. But my older daughter has been so devasated by Lyme I would not hesitate to treat a bite with 3-4 weeks of abx. We just found a bullseye on my 3 yr old and she is on 6 weeks of abx, and I have made an appt for her with Dr. J - cannot go through this/let one of my kids go through this again.

my DD8 had a huge red groin rash and we finally got a dx of Lyme, it could be many things but just wanted to mention the Lyme to you as well. she also had strep at the time. it went away after months of treatment

I am posting this on the PANDAS and Lyme boards, because there is mention of Strep related to Lyme along with IVIG. While I had to control my nausea at the numerous mentions of Alan Steere and the ridiculous recent dead spirochete pieces Yale theory when reading this, there is some interestng stuff in the Katz paper at this link http://www.help.sena...5-aa0c57233aed. I am wondering about this Plaquenil/Biaxin combination for Lyme, has anyone tried it? My Lyme Pandas DD seems to have good results with Biaxin/Augmentin I am wondering if Plaquenil would be a good idea instead. As an aside, intestingly when we switched DD back to Augmenten/Biaxin from Doxy for the school year, as expected and as before when we have switched abx she had a major herx of psych symptoms. This time though she had major OCD last night, cleaning things, lining them up, curing in a ball on the bed so she would not mess up the bed covers. Then she went to heavy crying/sobbing for a very long time. Previously the herxs have been obsessive thougts, this is the first time she has been cleaning, lining things up etc. I gave her some melatonin and she fell asleep finally. Hoping this only lasts a couple of days as it has before when we switched. We did not see full blown OCD like that when we swicted from Aug/Biax to Doxy, just depressive thoughts and some obsessions. Really shows me how each med is attacking something different. * trying to post the link again, it isn't working when I paste it so just remove the quotes to paste in browser "http://www.help.senate.gov/hearings/hearing/?id=53342b1c-5056-9502-5d05-aa0c57233aed"

While I had to control my nausea at the numerous mentions of Alan Steere and the ridiculous recent dead spirochete pieces Yale theory when reading this, there is some interestng stuff in the ?Katz paper at this link http://www.help.senate.gov/hearings/hearing/?id=53342b1c-5056-9502-5d05-aa0c57233aed. I am wondering about this Plaquenil/Biaxin combination, has anyone tried it? trying to post the link again, it isn't working when I paste it so just remove the quotes to paste in browser "http://www.help.senate.gov/hearings/hearing/?id=53342b1c-5056-9502-5d05-aa0c57233aed"

Thanks, I didn't realize about the mixing. When I see her like that it's so hard to see her in pain and not be able to do anything. I bought some Arnica natural cream but the warnings I found on the internet seem scary. She said the pain lifted so hopefully we are through this one. I think you should read the warning label on apsercream Aspercreme Cream should be used with extreme caution in CHILDREN younger than 12 years old; safety and effectiveness in these children have not been confirmed. Read more at http://www.drugs.com/cdi/aspercreme-cream.html#018KIuBsTDIQXEYZ.99 Also your are mixing ibuprofen with aspirin the active ingredient in aspercreme. Never take aspirin and ibuprofen together even in adults. Also aspercream contains the following chemicals which should be avoided DMDM Hydantoin Phenoxyethanol Propyl Paraben I know little about PANDAS except that my grandnephew was just dx'd with it. As for Lyme everybody is different in terms of recovery. Red

My DD8 in month 5 of treatment for late misdiagnosed Lyme, she took 60 days of augmentin/biaxin and now 60 days of Doxy, switching back to the first combo for school. I think she was infected 2.5 years before Lyme detected. She also has PANDAS/Myco and a few co infections, so far testing negative for Bart and Babesia. She had terrible hip arthritis that went away after the 60 days of Augmentin/Biaxin. Other leg pain continued, but she has been doing much better. Yesterday we went to the beach, after a few days at Hershey park and Sesame. I thought the salt water would be a good detox. Boy was I wrong. Had a horrendous episode last night, she said she was in massive pain all over and was afraid to go to sleep because she thought she would die. She flat out refuses to take Advil, I rubbed her legs with Aspercreme and snuck some advil into her milk (not enough of a dose though). After about 30 minutes she seemed to get better moodwise. My question is, should she be in so much pain after 4+ months of heavy treatment? Do I need to consider IV abx? (our LLMD thinks we are a long way off from that). could something else be wrong? Why would the ocean cause this? I have noticed a definite link between swimming and PANDAS symptoms, but I thought it was chlorine. But this massive pain flare has not happened since she started heavy abx. All thoughts welcome. BTW she was awesome on our trip, had a blast, got along with her sister, and almost no complaints.

http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?_r=1&smid=fb-share

On a side note I began having migraine with aura, no headache, only about 15 years ago. I tried low dose Elavil (made me feel happy but didn't help) and then used Imitrex but sometimes I felt that it made them recur, when I found myself pulled over in a burger king injecting myself I thought there had to be a better way. so I read something about Feverfew on the American headache associations website and started taking it daily (can't recall the dose but you can google it) for 1.5 years. they completely went away and I have had maybe one or two very mild ones in years since that time. It took a few months on feverfew for them to stop but I continued to take it for some time after because I was so afraid of them returning. I used liquid and tablet form, and if I strated to get one I would take some extra liquid Feverfew. Good luck I know they are awful.

I spoke with our LLMD and he highly recommended Galaxy too, even though he is in NY and can't order it, except we have the abx issue which is just not an option now. I took her off Doxy for a week because she was having very blurry eyes and she started to tank. Can't imagine a month off at this point in time, but I am hoping maybe in the spring. We also discussed Rifampin anyway, without the test. DD has had lots of psych issues - OCD, suicidality, no self esteem, etc - also has PANDAS. Myco, and hetero MTHFR 677T. It's so complicated it's hard to say Bart or something else.

My daughter was misdiagnosed and untreated for what I now think was Lyme in april 2010. she also had been dxd with EIA in January of that year by our pediatrician.In July of 2010, she began to have massive coughing and breathing issues, it went on for a full 6-7 weeks and I was loading her up on albuterol, prednisone and flovent which made it worse. I had something like 10 office visits, they would not give me antibiotics insisting it was viral. Sorry but I have to add, idiots! After all of my research I now think it was ehrlicia or the RMSF she has now tested + for. I am fortunate she made it through this. I had her sleeping in my room because she was so ill, at 5 am I woke up she was gasping for air unable to breath. After the first gasp, no sound. I was terrified, screaming. She started breathing. Gave albuterol again. Ped finally said to go to pulmonoligist, he did x rays. He said he thought it was a bad sinus infection/drip causing all the mucus. I BEGGED pediatrican for antibiotics, promising I would stop if it did not work, they gave her a z-pac. She got better in 24 hours, then it came back after abx was finished. Ped relcutantly gave 10 days of Zith, then the thing went away. DD had subsequent full pulmonology testing/workup maybe 6 weeks following and was dxd with asthma, not EIA. Pulmonologist put her on inhaled steriods, she became depressed. Took her off, she got better. Happened twice, in the context of Lyme/PANDAS I now understand this but did not at the time. So now I just try to manage her with the neb (and I pray!). I honestly don't really like our pulmonologist, but what I learned from this experience is that general doctors are just that, generalists, and they just don't have the experience or training to treat, they just loaded up my DD on albuterol. The only real way to diagnose asthma is to have the full pulmonology testing which takes 1-2 hours. Otherwise a doctor is just guessing, and when using something as powerful as albuterol my two cents is that it is important to know for certain before you use a medication like that. To add one more element, pulmonologist says if DD needs to use inhaler, she needs to stop activity and to rest. No puffing and going back into the activity, if a real asthma attack it is extremely serious.

My younger sister had nephrosis when we were young, it was an emergency situation and very serious. She had to test protein in her urine for years following. Not to alarm you but personally I would get this checked out by an expert

Lyme can also lead to MS and RA misdiagnosis, so its good to rule out everything else.

This is regarding the dog tick, engorgement or attachment time are totally irrelevant. This is another myth brought to us by the folks who deny chronic Lyme etc. My nephew acquired Lyme in a tick, not engorged, attached less than 12 hours. I found a bullseye on my 3 year old's arm this weekend, if she had a tick it was not on there long, and I mean a few hours, because it was in a completely visible spot and I check all the time. Dog ticks carry very nasty coinfections, Ehrlicia etc. I would test the tick if that is still viable due to the time passed and pursue antobiotic treatment if anything comes back positive. The amount of antibiotics your DD had is not enough. You need 4 weeks abx for a bite with no symptoms.

Hi sorry for thr late add but we have been dealing with asthma with my daughter. The pediatrician COMPLETELY misdiagnosed Exercise Induced Asthma and mistreated it and had DD using albuterol on a daily basis which is extremely unhealthy/dangerous if not required. She had an emergency situation (looking back now I believe was caused by ehrlicia or rocky mountain spotted fever,maybe myco, didn't know at the time) and we were forced to see a pulmonologist. Upon testing discovered that DD did not have EIA, but actually has full blown asthma. It is very difficult to manage because due to Lyme I need to keep her off steriods. However, I have found that using a nebulizer is extremely helpful when DD gets sick and knock wood have been able to get her well during flares with just the neb. One thing the pulmonologist told me that has been very helpful in managing this, breathlessness is not a sign of asthma, wheezing, airways seizing up, and coughing are. Breathlessnes is a different issue. Same as with with Lyme and PANDAS, pediatricians mistreat/misdiagnose asthma as well, breathlessness is not a sign of asthma. Very glad we ended up seeing the pulmonologist.

My 3 yeare old doesn't sleep well and twitches in her sleep. She took Prevacid for a year which depletes magnesium, I am suspicious that she has a definiciency but was nervous about supplements. This sounds like a good option. She has an immune issue, and unfortunately I found a bullseye rash on her last weekend so now it looks like I will have a Lyme battle with her too, the past 8 months have been battling Lyme/Pandas for my 8 year old. Hoping this time as we caught right away it will be different.

Yes Red, correct DD is darling daughter, she is 8. Thank you all, am definitely continuing to aggressively treat Lyme. I am considering that galaxy test too, considering adding rifampin and abart. She slready has 3 (4 if you count Myco) other co infections so it would be entirely merciful if she was spared Bart...I found a bullseye on my 3 year old today, heartbroken again but at least this time I guess we are fortunate that it was early

Just an update, I decided to try to see if DD could get any pain relief so I took her to my Orthopedist. My thinking is I can treat both the Lyme and the symptoms too. Turns out per Orthopedist that heel/sole pain is extremely common in the 8 y.o group because the heel bone is not fully formed and there is tension between the achilles and the plantar. Orthopedist showed me x-ray and it was all right there. He said also DD has flat feet which could be painful too. He said not 100% sure it is this problem and not Lyme (Bart?) causing this but in view of Lyme he is sending DD to Physical Therapy. PT told me she has another patient the same age, same issue. Apparently the bone fully forms around 10/11. So we are also doing PT, not sure yet if it is helping, and am getting DD shoe implants for the flat foot issue. Continuing to blast away at the Lyme et al. If this PT helps I will be very happy.

I thought Magnesium could make Lyme worse??? Could you please give more details on what this cream is used for? I am sure my 3 yr old has a magnesium deficiency(not the Lyme DD although she has some IGG bands positive, ugh) because she twitches all the time in her sleep, and never sleeps through the night. She was on Prevacid for a year which I understand depelets magnesium. I know I need to get her to am integrative doc but have been so mired with my Lyme/PANDAS DD that have not attacked this. She also has sensory issues, I am sure it is all related. This sounds intriguing to use a cream rather than a supplement for my 3 y.o.

Tpotter you just gave me so much hope, I keep telling my daughter that we are going to get rid of all the "buggers" and I really try to believe it. Have read so much to the contrary, this really is wonderful.

Just want to commiserate this is the most awful thing when your child tells you that. My DD8 (Lyme/PANDAS/Myco)seemed to actually have suicidial obsessive thoughs took us a while to figure that out, that it was actually obsessions. In my DD's case it was totally misdiagnosed as depression. They have mostly gone away with abx. Our new wonderful psychologist, told me that with OCD this suicidal thought comes up as a way to alleviate anxiety. They don't actually want to die, they just don't know how to alleviate the anxiety so that thought is calming. I know its extremely alarming but this has helped me to better understand and focus on the anxiiety/other calming ideas. Fortunately I just found a wonderful psychologsist who specializes in chronically ill children, while her focus is on Lupus children she just really gets it. I imagine there must be some others like her. We are in the NY area outside of NYC, if you are near I am happy to give you her name. Oh to add my DD's suicidal obsessions went out of control on high dose amox treatment for Lyme. Doxy helped calm it down and the augmentin/biaxin really took her to a manageable level. Hugs, you are not alone.

Sorry I can't add much on the SSRI as DD was not on for very long and it did not work out. However I do think you should consider waiting till you get into see psych to start. The pysch my DD saw monitors every week when a child starts meds, and I think this is standard practice. After a month it was every two weeks and then it was supposed to be monthly. I would think it very risky to start on psych meds without a psych actively monitoring/available.

I saw a documentary on them, they live for four years and need to eat only three times during their life. Unbelieveable.