fightingmom

I know it. I'm just in a bit of denial - albeit a stupid denial. I am very grateful to you and a few others that messaged me and told me to run to an LLMD before even having any test results. You guys know your stuff! I am really thinking my son needs to be involved in this (he has appt with LLMD, too). Now, I even wonder if the zithromax has been helping with his raging, etc. because he has a lyme component in all of this. And, perhaps the reason for his cycling behavior, a few weeks of good and then boom hit with a few bad days, then good again....boom...

great info in here. Will be heading out to buy some Sach B. to add to my son's probiotic regimen. He's been getting diarrhea lately. Didn't at the beginning but starting to now.

I don't know about appeals, but just wanted to say I'm very sorry to hear you were denied.

Well, I just got my Igenex results. Let me start by reiterating my previous labs. Had WB done by Clinical Lab Partners/through Dr. B. in CT -- they actually do report 31/34 and I tested positive for band 34. They said the don't see this come up often and usually indicates chronic infection. Was surprised they actually knew that to be honest. In any case they suggested I go to LLMD. I have an appt. on May 11th. However, I did a phone consult with LLMD and he thought based on my symptoms over 15+ years that it was evident we were dealing with lyme and/or coinfections. He told me if I needed more convincing I could have the CD57 done. So, I did. CD57 -- 20 Low. Then I went ahead and ponied up the $200 for Igenex WB. Not sure why, guess I just needed to be sure. Here are my results: IGM Result Positive **23-25 IND **31 + **41 + 66 + **83-93 + IGG Result Negative **31 IND **39 IND **41 + 58 ++ **83-93 IND I've researched the bands, I know the 23-25, 31, 93, 39, etc. are specific and significant. Somehow I still am trying to convince myself it's something other than Lyme. I think I'm nuts. This wasn't part of my plan. Frankly, I'm just pissed off~

Can totally understand why you are frustrated. Hang in there. At least this just confirms that you are headed down the right trail and another reason to get them taken out!

Thought it may be of interest that my son was a binge eater. Since starting Zithromax and zinc he is not binging any more. It's been nearly 4 weeks. I started both on the same day so I can not say which is helping, but I find it interesting....he even says he no longer has the urge and "doesn't even think about it".

We are doing another urine test today and they are going to culture it. Told me on the phone it would be more expensive but didn't mention sedating him, though I can't imagine they can do it without. They are also going to do a lyme test, too. His last one was negative but was September of 2010. He's on amoxi and cipro right now, but wondering if they will change it?

please share -- what is it?! Crap. I ran out and bought something else (which he doesn't like) and I can't remember which ones I buy. I just recognize them when I see them. One is a white bread with a green bag I think. I'll take a pic of it when I go next time and post it.

Does it ever end? I swear. Was looking this up a bit ago. Found a study in different strains of streptococcus pneumonia found in animals vs humans: http://www.plosone.org/article/info:doi%2F10.1371%2Fjournal.pone.0008286 I'd really love to find something showing the specific serotypes found in dogs and cats and compare them to our titers...just out of curiosity.

Thanks for sharing this!

I do beliee that h2 blockers cross the blood brain barrier. I gave Pepcid ac to my son for reflux and saw an improvement in his behavior/attitude.

The first one was free catch. Then they sedated him for an X-ray and took another sample. Not sure how they got it though.

He is home now. His temp went down after IV so they said he could come home as Long as he eats and drinks normally. So, I can't have them do it now. I'll take him to the vet tomorrow and ask them to do it. Thanks for all the help!!

No they didn't, but it's funny you asked because I almost asked them too. Though, I think i made them think I was a little nutty already by asking specifically about the types of bacteria and asking them to give it to me on paper for my son's doctor. Bahaha. They did not plan to culture it, but I have to take him to the regular vet next week anyway. He is really sick, had some kidney values come back abnormal, specific gravity a bit low, high BUN, high GLOB, high RDWa/RDW% AND abnormal WBC distribution. Other numbers indicate he's anemic as well. He's on amoxicillin and cipro, as well as antibiotic some drops for his ears -- and flagyl as they said at the ER he had some nasty foul smelling diarrhea. I was disappointed by the plain ole amoxi instead of something with clav acid, but maybe I'll try to get the vet to change it too. I think I'll ask them to culture the crap in his ears and also do a lyme test at the vet next week.

So, my dog is sick and wound up in the ER today. Ironically, his major symptom was that he was urinating frequently and even peed on his bed! I took him in and he had a fever of 105.4 and they did blood work, urinalysis, took sample of yuck from inside his ear (recurrent ear infections are an issue for him). In his ear, they found yeast and cocci. In his blood they found cocci and in his urine they found cocci, which were specifically listed as: "cocci chains" AND "rods spores". They said cocci is either strep or staph -- and the rods are bacillus. So, I looked these up: ---Well, that's just great. So it's strep. ---I will admit, I had to look up the word paraphyletic. And, it seems that it's basically saying it's related to these other bacteria. That's a little unsettling, no? I also have a cat that has stomatitis - I had posted about it here. It can be caused by strep. http://www.latitudes.org/forums/index.php?showtopic=16861 My son has not been nearly as bad as he was prior to abx, BUT his behavior has been amping up a bit the last week. Makes me wonder if this is related.

My dog is in the ER. He started urinating excessively and peed in his bed. Has a fever of 105.4 and urine came back with multiple types of different "cocci" bacteria. They admitted him. Doing bloodwork, IV fluids and try to figure out source of infection. I had them take samples of his ears too. First, poor doggie!!! Second, makes me wonder....

We are on the same page and trying to do the same things. What I make at home is I prepare and i don't do any fast food, etc. but when he's out at friends houses, or riding on bike and grabbing stuff at store from time to time, I can't control (but that's not often because he spends his money the second he has it). Bread has been a huge battle for me. He fights me on all the bread I buy, says they are gross. I finally found a few at Trader's he will eat.

Wait, so I can swab myself and send it, or still has to be submitted by the vet? Could probably swab my dogs throat awake with more than one set of hands. He's kind of stupid like that and even likes me to brush his teeth and pry his mouth open. LOL

Wendy, I think your daughter is my son's long lost sister. Very similar symptoms, escalating at same time of year, down same path, short hospital stay, psych meds 9even some of the same ones or same recommendations), psych diagnoses, etc. We jumped off the psych ship before trying lamictal - it was probably going to be next on our list to try, but a really bad SSRI experience took us off that train. However, I have researched it and it seems to help inhibit the reuptake of dopamine. I believe my son is actually suffering from imbalance of dopamine, and likely that levels are low - or getting misdirected somewhere along the way and not hanging out where it should be, so it's effectively low - even if it is "there". Low dopamine is often a cause of anger, rage, addiction, impulsive behavior, be extremely hungry (my son) OR be stricken with nausea and have fear of eating because of it. A lot of focus seems to be put on serotonin, but in reality, dopamine is a key player and bad things can happen if levels are too high or too low. Dr. B. also told me that dopamine is affected in PANDAS kids, I had already suspected that, but he confirmed it. Here is a link I have saved from a while back that really helped explain it;s role in layman's terms -- www.pdrecovery.org/publications/once/medications_chapter_07.pdf Point being, with your daughter's symptoms and how they remind me so much of my son, it does not surprise me (based on our experience and our reading) that the lamictal seems to have had the most impact. We also have seen the best resolution with anti-inflammatory meds. No doubt in my mind that inflammation of his brain is an issue. You experienced inflammation in the gut. There is a huge gut/brain connection. Coincidence? My feeling is no. We are currently on augmentin and zithromax. Zith was added about 3 weeks ago. So an immediate improvement (overnight) - believe it's partly due to the inflammatory properties, as I haven't had to give him ibuprofen since the day we started the zith and I had been giving it everyday. It could also be helping with MycoP infection that seems to be running through our family, but not sure. Hang in there. This is a long ride, I don't have half the answers, I just know that your experience sounds eerily similar to ours and i feel for you.

Crap!!! We eat very healthy, but BBQ sauce is one of my son's favorites. I have been buying from Trader Joe's lately -- hoping that one is better.

Just wanted to tell you that you are not alone, I also feel vaccines were a major contributor.

Wow, what a rough ride you have been through. I really appreciate you sharing your wisdom, experience and research. I do feel this mycoP is a big issue for us. At this momment (disclaimer: tomorrow I may change my mind, lol) I'm not sure I want to do IVIG just yet. Not because I'm afraid of it, or because of any outlandish reason, but just because it seems to only be a temporary fix in many cases. And, from what I have read a good number of lyme kids regress right after and I honestly don't think our family will survive that. He will wind up hospitalized if that happens. I'd really love to take a stab at killing the bugs, detoxing and boosting the immune system -- and heading down the methylation road. I feel like it's our true shot at a full recovery. Maybe IVIG somewhere in between will gives him a much needed boost in there, but i feel like holding that in my back pocket at the moment. Has anyone made successful gains without it? I found your comment regarding the vaccines and the soldiers interesting. I have been super sick since August -- when I received about 4 vaccines on one day in order to meet the requirements to enroll back in school. It's been a downward spiral ever since. I do not think this is a coincidence and I also think the giardisil vaccine really put my son over the edge.

Not sure if there are any studies, I have used it before to ward off fleas and we didn't get fleas -- but that could be coincidence. Don't use it on cats though, could be toxic -- onions are lethal, garlic may or may not be the same I haven't checked lately and can't remember. Maybe for dogs in high doses too.

You are really helping me along! Thank you very, very much! We both have chronic dry cough, though his has subsided a lot in the last few weeks --- which it will do periodically but then amps back up again. Maybe corresponding with sinus infections and lingering longer. I will pay closer attention. I just heard it again last night though. His behavior has been creeping back, he was AWESOME the first 2 - 2 1/2 weeks on the zith and the past few days I am seeing the signs again. He was yelling at me to shut up and pounding up the stairs, door slamming, etc. last night because I was telling him to get his homework done. Hmm, we are going to LLMD on May 11th. I am bringing every lab, including the ones for my husband and maybe he will take us down further exploration of mycoP since it's a common lyme coinfection. I had a phone consult already and doxy came up for me...so we'll see. Did the doxy/mino finally eradicate the mycoP for you guys? My dog has chronic ear infections, bulldog posted an interesting tidbit about streptococcus pneumoniae and dogs...makes me wonder. I think I'm going to push hard for a long round of strong abx for the dog and really try to get to the bottom of this mycoP stuff. Thank you again! I will google the chronic systemic myco!

Thanks. Let me know what they say. I know we are fairly close, what vet do you use? We go to one in Providence, but I tend to avoid them if possible these days because they try to push yearly vacs and I'm not doing it. So, I really would like one that doesn't mind that I'm not vaccinating more than every 3 yrs. It seems your vet has been supportive in trying to unravel this stuff for you and doesn't think you are bonkers for testing your dog to see if he may be the source of infection for your family....thought maybe if they are close enough I could give them a whirl? I question my cat with stomatitis too....