kmom

Hi, It's been a long while since I posted. Overall my kiddos and I are doing well with Lyme treatment. A few bumps in the road but we are way better off than if we never found LLMDs for diagnosis and treatment and I have the veterans on this forum to thank for that I am need of Dr. in the Albany, NY area that will help my cousin. She is 38 and was Dx'd with MS 8 years ago. She has been treated w/ MS meds but back in Jan of this year things changed. She was dx'd w/ pneumonia in Jan and again in Feb. Then she was dx'd w/ asthma. There was some conflicting evidence whether she had pneumonia at all then. Her neurologist who dx'd her w/ MS says the lung issues have nothing to do with the MS so she saw a pulmonologist who now is ruling out asthma (he himself doesn't believe it is asthma) and next wants to move onto a bronchostomy test. I have been saying you need rule out Lyme. Now she is at the point she is utterly confused due to her Dr's refusing to look into Lyme for her (of course! same old story!) and she is starting to feel the brain fog, anxiety and mood swings that could be from Lyme and just from a general unwellness that comes from feeling terrible. She is now very willing to explore Lyme but no Dr. will take her on that journey or at least anytime soon b/c LLMDs are tough to get into see and she is NOT well. She can hardly take care of herself let alone her 2 little ones. Anyway, if anyone knows a GP or any Dr. (intergrative, any kind qualified to sign that IGenex Rx) in the Albany area or not too many hours away to sign that IGenex Rx so she can get some answers, could you please let me know? This is a tough cookie who has been knocked down terribly by something and to me Lyme has its ugly name all over it!

RN Mom, Do you find "LV-GB Complex caps by Designs for Health" better than Milk Thistle? Thanks!

Well I have to agree. I was shocked when I moved to my area (NW suburb of Philadelphia) and I was told there was something in the water b/c so many kids were on the autism spectrum. But I wasn't worried b/c my kids were 4 and 7 and seemed perfectly healthy....till 7 months later when my daughter had chronic strep throat and along the way of testing the family, my son was a carrier. After her tonsils came out, a new child emerged, a completely different child. Over a few week period, she developed severed OCD, anxiety, facial and hand tics, insomnia, would stare at me like she wasn't in her body and I said to my mom that is she wasn't 8 yrs. old and was only 3 or 4 I would say she was autistic. But she was dx'd w/ PANDAS by Dr. E in Philly, Dr. T and Dr. B...we kept seeking new dr's when we weren't making gains and because a month after DD8, DS5 started w/ symptoms (some same, some different). It was insanely hard to comprehend, deal with, etc...like you all know on this forum. Thank goodness for Dr. J who reread their Igenex test and saw the high titers for Bartonella and we were able to turn this thing around for both kids. They are in a great place now. Some OCD lingers for my DD but she has a nut allergy so her fears are valid when it comes to food and contamination but it certainly doesn't define her life anymore. I thank God for this forum b/c the parents on here are the ones who made me keep pushing for answer and not accepting that they must have been exposed to strep everytime they worsened...I learned later on it wasn't strep exposure. I took meticulous notes and it was an obvious Lyme and Bartonella die off cycle. It was like clockwork. So yes, I believe Autism has multiple causes but as I look around my neighborhood and see so many children on the spectrum, I wish their parents knew to exhaust the Lyme avenue. Some think they have b/c their pediatrician ran a Lyme test. If I went by the Western Blot test alone from my local lab, I don't know where we'd be.

To be honest I forgot about this test. No never got it done. I never understood why Dr. T told us to get a test that was impossible to obtain. I tried every which way and even called Mayo Clinic in Rochester, MN. I basically had to be there to have the test done. I am sorry about your situation. I have been with my son abd daughter. Luckily, I switched gears from seeing only PANDAS dr's such as dr T and Dr. B and found 2 fantastic Lyme Literate dr's who really understand infections in general because my kids weren't only ailing from strep bacteria thus focusing purely in strep was not getting my kids well. We were in a cycle @ best where we had horrible weeks and then a few better ones. Finally exploring other bacteria, we got to the root of the problems and the kids are so much better. We finally felt we were getting somewhere and not stabbing @ things in the dark. Dr. T was VERY kind to us when he was REACHABLE but he really only got the pANDAS end of things and acted shocked when we figured things out and explained the other bacteria infections causing the autoimmune response. I could name dozens of other parent who had similar stories to mine and whose kids are now thriving and regaining their childhood's back b/c their parents finally said, I need to explore another angle/ method of treatment.

Hi everyone, Sorry I have been MIA. My dad was sick and passed away a month ago so I was super busy traveling to help w/ all that. Luckily my kiddos were doing so well on Lyme treatment thru it all (and even b/f he got ill). They still are WAY better than last year but since starting school my DD caught a cold/viral Inf and wouldn't u know facial tic returned after being gone for so long. Her OCD/anxiety flared too. So disappointing bc things were so normal in every aspect--going to sleepovers, no anxiety, no OCD, etc. Talked to Dr J and suggested we stop abx's this weekend to see if she improves; if not, possible abx change. Just to update, I am feeling much better from Lyme tx. We were all seeing Dr B in MD but when kids finally got in to see Dr J we decided to stick w/ one dr & we chose what we felt was the ped Lyme guru. As for myself, I switched to dr J in Wash DC. I still think dr b in MD is fantastic but I wanted a dr who specifically treated Lyme on a daily basis and had a good grasp on how to taper off the treatment, which dr b might be perfectly good @ but I liked dr j's pulsed abx approach If anyone on the thread still needs contact info let me know. Since I am behind on this thread and emails in general, u may have gotten the info already. I plan to be back on the forum more now.

So for a year now we have dealt w/ LD/Bartonella symptoms. Didn't realize Lyme was the culprit until last Oct/Nov. But we have learned the effects of the nasty stuff ticks carry...1st in my DD, then DS, then me, probably my DH, now my dad and possibly my mom. It's insane how this has turned our life upside down (and I know you all can relate!). NONE of us, not even as sick as my dad got (LD/Ehrlichia/Babesia/Bartonella/Chlamydia Pnuemonia) these past few months (dr's assume he got bit sodding his lawn in Feb.) have any of us ever seen a tick or a rash. We had to go off clinical symptoms, CD 57 scores, Igenex results, etc. In order to help prove my thoughts that ticks are in our yard which is on a golf course with deer and mice, I did a tick sweep the past 2 wks w/ white felt like in Under Our Skin...yes my neighbors probably think I am nuts! I found a few bugs but nothing that exactly screamed tick. Wasn't sure if I had found nymphs or mites so I took my few specimens to the local Penn State branch 3 min down the road where they identify ticks under a microscope...no testing for LD but at least identify. 2 of 3 specimens weren't ticks. The 3rd one was smooshed and we couldn't tell but probably a red clover mite like the 2nd specimen. Then...tonight, my DS6 was reading to DH and at the end DH rubbed back of head to say he was proud of him and he felt what he thought was a scab in his buzz cut hairsytle. Low and behold...it was a tick!!! It wasn't embedded/engorged but it had a little piece of skin hanging from it. I have it in a baggy all ready to go to Penn State tomorrow for identification. So the ironic part is this: We have lived w/ the effects of LD for a while but this felt like getting kicked in the teeth to see this little creature whose little relatives have caused so much trouble in all of our lives. After I bathed my son, ripped his bed apart, washed all his bedding in hot water (just in case there were more), I cleaned his ears. I love to pick, clean ears, etc. I even have this flashlight on a headband. So get out the flashlight and Q-tips. 2 wks ago I noticed a black spot like a scab in his ear canal. I tried to wipe it out back then but he cried that it hurt. I assumed he had a cut in his ear canal??? I did think possibly a nymph tick but scolded myself to chill out and not have Lyme on the brain. A week later it was still there but I couldn't get it easily and didn't want to make him upset since it hurt the week b/f when I tried to get it. Tonight I was finally able to wiggle it out of canal. I was determined. I nearly dropped dead. It appeared to be a very small tick with dried blood connected to it! I had to struggle to see it thru a magnifying glass. My son saw it too. So now I have another specimen in a baggy to take to Penn State. Specimen #1 is definitely a tick but I want them to identify which one for sure. Specimen #2, will be interesting to see under the microscope. Uhh, just an upsetting night.

Wow! Thanks! I want to go. Wonder if there's space available.

Thanks Michael! It's like you read my mind. I have been dealing w/ allergies/sinus issues the past 2 wks. I discovered the MARCONS nasal issue last week and it seems to be my problem. Before learning about it, I instinctively was shoving Neosporin in my nostrols with Q-tips. I am planning to go do the wash ASAP. I need some relief. I did read on a website about the urine recommendation. I don't think I have the stomach for it but I have done things (cleanses, etc.) for Lyme that I never thought I'd do so who knows! Jodie, I agree with all that you wrote. Nicely stated! We are trying to detox more for sure. Thanks for the burbur idea from a while ago. We think it's great!!! We feel the need even more for detoxing and drainage since we started using Pectasol for chelation. I read in Klinghardt's info that chelation can bring out the dormant spirochetes. We started to notice some backsliding after starting daily Pectasol pills. My sons OCD, frustration and insomnia came back For me, I started with the chest soreness, out breath more easily, sore soles, more pains and twangs. Do you see that happen when people take chelators? More detox has helped but still there and we were doing really well. I think it's a constant battle till all those buggers are gone! Thanks for sharing!!! Jodie

Philamom, I have been researching this more after my dad got sick b/c it just seems so strange that we all are sick. I realize that a family can vacation, hang out in the same Lyme infested yard, etc. and many or all get sick, but I found it interesting how our LLMD was interested in my dad's mold exposure when his office bldg was renovated in summer 2010 thru Dec. 2010. I researched mold, HLAs, Lyme, etc. some more after his appt and it dawned on me that our kids' LLMD tested for HLA and were positive for HLA . It made me wonder if my dad and I and anyone else in my family had this genetic predisposition to not clear toxins from the bodies as quickly which can lead to longer illness time and more severe herxes. I even read that people may clear the bacteria but if the biotoxins are still in the body, they may never get well. So from what I gathered is detox is even more crucial for people w/ positive HLAs than I ever imagined...just my humble opinion. I plan on asking a lot more at my next appt w/ my LLMD and at the kids' appt w/ their ped. LLMD. If all that I read is true, understanding HLAs could be an important component in healing those with many chronic illnesses.

Darlene, The article looks awesome!!! Can't wait to share it! Way to go! BTW, if it helps to use my kids real names, we aren't opposed. We just made it more fun to make up names! Kristie

Haven't posted this till now frankly b/c in all the craziness and stress--switching my kids meds(things settling ) and my dad getting so sick w/ Lyme and co-inf's-- so this was on the back burner b/c it's so minor in comparison. But has anyone felt like they lost their taste buds? I am trying to decipher if it started when Cipro was introduced my med mix. I remember b/f taking Cipro though (maybe like 2 months ago) that I'd go out to eat dinner and nothing ever wowed me. After a few meals out, I remember thinking, "Am I just choosing the wrong meal choice, restaurant, etc b/c I used to really enjoy a meal out?" I love to cook and usually enjoy my meals at home too but I feel the same way about my cooking now. Finally last night I treated the kids w/ breakfast for dinner...they love that switch up. I usually do too but after I ate I thought, "I could have replaced that meal w/ celery dipped in saw dust and it would have tasted just the same to me!" Now I shouldn't complain b/c I could take advantage of this, not be bothered by low calorie choices and lose a few pounds I gain thru my more sedentary lifestyle since getting sick. But if anyone has experienced this or knows about this, can you let me know if it passes? I'm just curious. It's so strange.

Thanks SF Mom! I was thinking of PMing you to ask you but you answered b/f I had a moment to PM u. So my dad went to see his family doctor (a Mayo Clinic GP). My mom had scheduled this appt over a month ago when they were perplexed by his symptoms. With all the craziness of him getting sicker, she forgot to cancel it. The trip to Mayo Clinic ER over the weekend for what he thought was his gallbladder bugging him, may just be the co-inf's causing belly tenderness. I think he originally thought it was gallbladder and the thought hasn't left his head. An ultra sound shows no stones. The ER dr. said she didn't feel an inflammed gallbladder from her exam but still could be low functioning...only a HIDA scan will tell. Interestingly enough, my dad's GP felt the his LD and co-infections could definitely be causing all this and not Leukemia. She still thought he should see a hematologist and offered him to see a Mayo Inf. Disease Dr. b/c the ER dr. recommended it. My mom very nicely said that she was concerned the inf. dis. Dr. would say he doesn't have evidence of Lyme Disease and send them on a wild goose chase. This GP said that if they had a good LLMD they trusted to keep at this with him. She was politically correct how she answered with saying, "If you ever want to meet with an inf. dis. dr., I can arrange it, but I think you are on the right track." Wow! That was big of her! My mom then talked to our LLMD to bring him up to speed on the weekend ER trip, our worry that Erhlichiosis mimics Leukemia, is bone marrow biopsy able to distinguish cancer from immature blood cell from the Ehrlichiosis, adding in meds for Babesia, etc. Now our LLMD said he never heard that Ehrlichiosis causes the cells to appear Leukemia-like. He asked my mom to have me fax my research b/c he was very interested. So I faxed that today for him to read. I was glad to hear he was open to learning or at least reading what I found. He also commented that he only started with Doxy b/c he feels 2 abx's would make him herx so badly...which is happening anyway so I agree SF Mom...I think he has a very high bacterial load. My dad felt that the cholestyramine wasn't working enough for detox so he had added in 2 charcoal pills/day. Recently he added 2 more charcoal pills/day and it has helped. He had a lot of herxing this AM--lots of rib and leg pain. I suggested he add in 10 drops of Burbur too. Think that will help??? Here's a portion of the research I found: "Once a human or animal is stricken with Ehrlichiosis, white cells die off faster than the bone marrow can replace them. These dead cells migrate primarily to the spleen which enlarges as a result. Frantically, the bone marrow works to form new, healthy cells. In its haste, it sends out immature cells which do not work efficiently. Quite often these immature cells are almost indistinguishable from those seen in leukemia patients. Advanced Ehrlichiosis is, in fact, often misdiagnosed as leukemia or lymphosarcoma." Since that was written, indications have grown stronger that Ehrlichiosis either causes cancer or sets up the conditions for cancer to develop. It has been suggested that dogs ostensibly cured of it should be tested for cancer four years after titering clear as so many seem to develop cancer of one form or another in that time frame. This is no big surprise to those of us who have seen our dogs come down with serious illnesses after – or during – their infection with Ehrlichiosis since, with an immune system that is essentially out of commission, the dog is defenseless. So we're still on the fence. Do we send him to a hematologist for a bone marrow biopsy? Will the results be accurate? I am still working on getting the name of a LL Hematolgist. An ILADS rep mentioned one in St. Paul, but she hasn't gotten back to me w/ his/her name.

Thanks! Great info to share w/ a friend who just asked me about her child's Lyme-like behavior.

Thanks! I just emailed ILADS. It's amazing how you lose clarity when knee deep in Lyme with your loved ones. After I read it, I thought, "DUH! What a great idea!" He's actually doing better joint pain/herxing wise. He hasn't vomited again. I have a theory but only a theory...LLMD said Lyme + Ehrlichiois + probable Babesiosis and Bartonella. He's only on Doxy, supplements and detox stuff. He totally has clinical symptoms of Babesia. Shouldn't he be on a drug like Mepron in addition to an ABX? Dr. Seemed surprised he was still vomiting but I have a lot of people vomit from herxing OR from the co-inf going untreated. Could the Doxy be targeting the Borrelia and Ehrlichia but not really the possible Babesia thus, the cycle of symptoms every 4-6 days as bacteria dies off? Am I grapsing at straws b/c the C word scares me??? Maybe. But I can't let go of his CD57=20! And he has sooooo many Lyme/co-inf symptoms.

Is there even such a thing as a Lyme Literate Hematologist anywhere in the US? I know there's a Lyme Literate Endocrinologist in my area so I figured I'd ask! This is in continuation from my dad's saga--dx'd w/ LD, Ehrlichiosis, probable Babesia and possible Bartonella. Clinical dx of course. Quest WB negative but CD 57=20! He went to the Mayo Clinic ER yesterday b/c he is still vomiting at times and so weak and achey. He was dehydrated and needs a HIDA scan for his gallbladder...but they don't scan on weekends. LLMD wants a hematologist on board to rule out Leukemia and Lymphosarcoma but Mayo Clinic scares me b/c they aren't Lyme Literate. The ER dr. was all ears and knew of Ehlichia but said he must have picked it up @ my house in PA since my kids and I are sick w/ LD and she doesn't see much Ehrlichiosis N. FL...altho all websites say it's found predominantly in the south. Who knows??? Don't care where he got it, just don't want Mayo Clinic giving him the run around since Ehrlichiosis mimics Leukemia....but it also can lead to cancer too Today my dad woke up with that terrible ear pain I get from LD. It feels like someone has shot a gun off into your ear. He also has bad jaw pain. His symptoms scream Lyme but his platelets went from 54 to 44 this week so I am very scared. He's been on Doxy for a 10 days now. I am also worried that if Babesia is a major player, shouldn't he be treated for that too?

He's not as high profile as those in documentaries or he would have charged you 5x the price to see him. Altho some charge that much and aren't that high profile! From what I know, he attends conferences w/ the more famous LLMD's but he isn't the one giving the presentations. So I take it you are back to the Lyme trail? Did the people at the meeting think you should investigate Lyme too? Did you learn a lot of info at the meeting?

Thank you ALL so much for the advice. It was helpful. And since I find so much wisdom on this forum, I'm going to kindly as for some more. We got some more blood work results back today on my dad. So we knew from the 1st set of labs that he had LOW platelets, slightly enlarged spleen, CD 57 was 20, and suspected gallballder malfunction (no stones but going for a different scan to check functionality next week b/c he's still having major digestion, gas and still vomitting here and there.) We are so confused by the vomitting he had Monday and again today. The LLMD seems to think he shouldn't be but I thought it could be a sign of herxing. So now the latest results show elevated liver levels. The LLMD is concerned and wants him to see a hematologist to rule out Leukemia and Lymphosarcoma. Here are his levels: Bilirubin, Total--1.3 Normal--0.2-1.2mg/dL Alkaline Phosphatase--286 norm 40-115 U/L AST--203 norm 10-35 U/L ALT--111 norm 9-60 U/L I have read that some people were misdiagnosed w/ the cancers mentioned above when it was actually Ehrlichiosis. But I have also read that untreated Ehrlichiosis has led to those cancers. Stinks we got the news close to 5pm on a Fri. What a long weekend. @Momaine--sorry to hear about your Easter. Wishing you all improved health! @Family of 5--ever hear of this liver enzyme mess w/ the mold toxicity? Just wondering. Also, went to Dr. Shoemaker's website and it was so interesting. Thanks!

@ ShaesMom--yes, I understand. The salt water in the bath has made their shower curtain colors bleed. When DS was a baby he had bad reflux. I used to tell DH, when that kid stops spitting up on rug while crawling, we're celebrating and buying a nice Oriental Rug. I'm doing the same w/ a new shower curtain. The moment we feel we've kicked the Chronic Lyme thing down the road, Mama's redoing the bathroom to get rid of the bad bathroom/tub memories! @LLM--Thanks. I don't want others in my boat but nice to hear success stories. And I do expect backslides. I knew it was a risk as we tackled cystic Lyme but what's the alternative...it rearing it's ugly face at a later date? I'm with you. Nail those microbes no matter what. I tell the kids all the time, "Lyme isn't for the weak!" I knew we were going to ruin that harmonious balance Rifampin brought us when we peeled back yet another layer but I needed those good months that we never saw consistently w/ PANDAS only tx to make me an avid believer in Multiple Chronic Infections/Lyme. And I do believe PANDAS without Lyme exists but not in our case. I could have saved a lot of time, money and heartache starting w/ our LLMDs rather than the 3 PANDAS specialists we sought out--but hindsight is 20/20. I'll be interested to hear what our LLMD calls back and advises. To add to the confusion, Samento arrived in the mail today. I'll wait till I talk to the Dr. though. Don't need to make more of a mess over the next few days. PS-thanks for Dr. name thing reminder!

So this is where the movie Under Our Skin resonates in my head over and over about TBI being our next Tsunami. It really scares me. So my Dad suddenly felt ill in Feb. He was very lethargic and was having vision problems--eye twitching, floaters (big ones) to the point it impaired his vision. Finally on a Sun afternoon he was so winded from climbing the steps, he went to an Urgent Care Dr. who dx'd him w/ pneumonia (did chest x-ray) and a sinus infection. The sinus infection wasn't surprising b/c he's a sinus inf kind of guy but the pneumonia was a shock b/c he wasn't even coughing so we never even thought of that as a possibility. Of course, I immediately thought to myself, "Oh no. What if it could be Lyme?!" The Dr. Rx'd a high dose of Levaquin and within days he was having herx-like symptoms so I put the bug in my parents ear that it could be Lyme. But they had explanations for every herx-like symptom. The bad knee pain was probably from the Levaquin known to cause tendonitis. He went to the eye dr and his eyes were fine so it was probably just from exhaustion. The vomitting was due to his bad digestive system which never handled abx's well. But I think once you've lived w/ Lyme in yourself and/or kids you get those "mommy instincts" even for your parents. Every bone in my body was saying he should explore Lyme. My mom too got a sinus inf and some herx-like symptoms from Zith around this time but my dad was obviously sicker. 3 wks go by and he's still not well. He gets an appt w/ a general practicioner and she feels the abx could have caused the knee pain. She felt his pneumonia was better but his sinus infection was still present. My mom explains our last year with Chronic Lyme just to so the dr. is aware but my dad is still in denial at this point and has no intention of seeing an LLMD or even just having a CD 57 test. The Dr. Rx's zith for the sinus inf. and says if in 2 wks things aren't better, she do another chest x-ray, run bloodwork, etc. He herxes all over again...vomitting, joint pain, major fatigue, silver starbursts in eyes. I want to fly down and shake them b/c it's screaming Lyme to me. But he's a 60 yr old man who gets to decide when or when not to investigate Lyme. As time goes by he starts to get pain by his gallbladder, chest pain and even pain on his left side of abdomen. He assumes that on top of all this he's just unlucky enough to have gallbladder disease. Luckily he started to feel the brain fog. Said he'd drag himself into work but was so foggy that he couldn't accomplish much. On a few occasions he even shut his door and slept on the couch in his office...so unlike my dad. He finally gave in and went back to GP. She suspected a diseased gallbladder. She said she was willing to run tests but Lyme was above her. My parents were coming for Easter anyway but we bumped up the trip by a few days after he got his bloodwork, chest x-ray and full abdomen scan done. He was in bad shape when he arrived. Luckily our LLMD office managed to move some appointments around and fit him in the following day...so yet another trip to MD but very worth it! (I had been warning them I'd eventually get my dad up to see him.) Chest x-ray was clear, ab scan was clear of masses and gallstones but spleen was enlarged. His CD 57 was a 20 and his platelets were a 54!!! Norm is 150-450. His lab work said ALERT! next to platelets. He was dx'd w/ Lyme/Ehrlichia, proabable Babesia and possible Bartonella. So we had a very "herxy Easter" rather than a Happy Easter! BTW, our LLMD was very happy my dad mentioned he rennovated his office building last summer thru Dec. and that mold was found. He feels the mold aggravated the Lyme AND it was important so he could start Cholystyramine to detox the heavy mold exposure. So after all that, here's my main question. Is this a recent infection or probably a dormant infection that happened to pop up now. I've read that a low CD 57 score indicates the infection has been there more than a year. Looking back at my dad's poor digestive system, allergies, chronic sinus problems and so on, he could be the poster child for Chronic Lyme. But ironically my father laid sod in their front lawn in FL 4 days before his pneumonia/sinus symptoms hit. I have read Ehrlichia symptoms appear 3-16 days after a tick bite. He doesn't ever remember a tick bit after sodding or any other time in his life. If I look at family history, I'd be willing to bet there's congenital Lyme and then maybe a fresh bite??? Or just the mold that brought it out. I could make myself crazy trying to figure it out. I always have to remind myself to let that go and focus on what we do know now. But you can't help but wonder why. In the meantime, I got my mom a CD 57 test and labs done b/c she's on her 3rd abx for sinusitus since Feb. and has some Lyme-like symptoms Huh, wonder how many times the word Lyme goes thru my head in 1 day!

Going through a backslide here and need advice. I've been wondering if my kiddos backslide could be due to needing an abx switch, a hidden infection, allergies that are bad now w/ season change, more detox, etc??? Since last Nov. kids have been on Augmentin/Zith/Rifampin for a Lyme/Bartonella dx. They also take Diflucan, Krill Oil, organic raw food multi, alpha lipoic acid, pectasol for chelation, probiotics, LDN and were on Milk Thistle but I yanked that as you'll read below and bought Burbur and Chlorella. They did so well through Feb. My DD felt was @ 95+%. It was amazing. We enjoyed getting our lives back. My DD was doing so well too, probably 90% better. Then we added in Tindamax on weekends and the herxing began. I began dreading weekends and the Mondays/Tuesdays after. I too was having a heck of a time w/ Tindamax...nausea and vomiting the 1st 2 cycles but it changed for the 3rd and 4th week long cycle (pulses every other week). No more queasiness but by day 5 on Tindamax, I'd wake w/ major pain from my neck, down my back and behind left leg. The pain was really uncomfortable. So at our last appt 2 wks ago our LLMD decided to yank the Tindamax in all 3 of us. He suggested Samento for the kids. It was on backorder and being delivered anyday now so we'll see what that brings. (For me he kept me on Doxy and Ceftin and added in Cipro to be pulsed every other week and said he'd probably start me on Alinia @ the following appt.) As for the kids, we had noticed some backsliding maybe a week or two prior to out appt. 2 wks ago. The only thing I could attribute it to was yanking Milk Thistle b/c I had been reading MT and Rifampin don't mix well. LLMD said it was more of an individualized case by case decision??? He wanted them to go back on MT. My DS was showing more signs of backsliding than DD so he switched up his abx. combo. He went from Aug/Rif/Zith to Aug/Rif/Doxy(weekdays) and Zith on weekends. He thought the switch would make a difference. Both kids also got Bicillin shots that day which I dread b/c I hate to make anything worse but IF things have to get worse b/f better I'm willing to endure it. By last Sat. DS was so defiant, oppositional,raging & perfection OCD was back. By the afternoon I had to carrry him into an epsom salt bath. It's this sad ritual where I have to just physically force him to get in the tub. He gets more angry, tries to avoid the water, but after I refuse to back down and give him no other choices, he cries in the tub and finally then relaxes and suddenly there's a break in personality usually b/c I've distracted him finally and the sweet boy re-emerges. My parents were here for the holidays (and to get my dad treated for Lyme/Ehrlichia/Babesia and possibly Bartonella but that's another post for another day I plan to share.) They were so sad to see DS backslide b/c he was doing sooooo well. My DD too has regressed since things were going so well but just not as badly. Thank goodness her contamination OCD hasn't come back! Hers is some anxiety (nervousness about school even though she loves it) and just that "not right feeling" and even have seen a few moments where she has unvoluntary arm/body movements for brief periods where she says, "I don't know what/why this is happening." So I try to analyze every symptom, Rx, detox agent, etc. I felt I needed to give the Bicillin some time to work in both kids (and the Doxy for my son) before throwing in the towel but today marks 15 days post shot so I called the Dr. asking if I needed to continue on this path and let the kinks work their way out, or switch up abx (maybe Rifampin stalled on them???) or who knows what else could be done. In the meantime, I've been adding ibuprofen as needed. I also started them on Burbur drops 3 wks ago but can't say I've been giving it consistently like I do all other meds/supplements. Anyone else have any ideas? I'm all ears!

Ugh, wiping the tears as I read this. Thanks Philamom! Great story. I really needed that today.

We saw Dr. Trifiletti last year for PANDAS. Glad he advised to find an LLMD b/c he's not Lyme savvy at all. We were stuck on PANDAS for a bit when Lyme was affecting both of my kids and myself actually. We too saw Dr. B in CT. Kids had 1 HD IVIg and then I really pushed the Lyme research and realized their labs weren't so negative like PANDAS dr's thought. We got an appt w/ Dr. J but had to wait 4 months so we got in w/ another great LLMD and got treatment b/f seeing Dr. J. He's great. He's in MD. Not sure where you are but he's worth the trip. Sounds like you are on the right track but you need to continue meds even after the 10 days of doxy from the ER. He's also good at helping boost the immune system and detoxing the toxins produced from bacteria die off. If you have any question, PM me!

You are not alone. The day I realized PANDAS could be a possible cause to my DD's symptoms, I cried b/c I could identify with it. I had Scarlet Fever at 4 and a lot strep issues throughout childhood along w/ OCD, unexplained stomach pains, separation axiety, etc. Nothing like the severe symptoms my kids got but still, I could identify with it. So PANDAS seemed like the obvious Dx when my DD got sick. CHOP dx'd her (although didn't manage recovery well so we moved on to Dr. T and then Dr. B.) A month later, my DS got sick. It seemed very strange then to me that both kids had PANDAS. We did Quest WB's and they were negative. I wasn't convinced Lyme wasn't playing a role in this mess. But I had Dr's telling me no Lyme, just PANDAS. But b/f their 1st and only IVIg Dr. B did Igenex testing. The results were deemed neg. by Dr. B and CDC standards but this was before Dr. J really helped Dr. B understand how to interpret Igenex results. So in the meantime we sought out LLMDs to help us figure it out b/c their Igenex results didn't seemed completely neg. to me. It wasn't till 6 months into the kids' illness that I got a flu shot. I went down hill quickly and Lyme symptoms came on like a ton of bricks. After really digging into my medical history, I'd be willing to bet I had Lyme/PANDAS for a long time and passed it onto my children. I can tell you that it's shocking to hear the dx but quite liberating to have more answers and a solid treatment plan.

Well said LLM. I agree w/ all that. Plus, I never got straight answers from PANDAS specialists when kids weren't progressing well enough. They seemed as perplexed as we were. It was nice to have good LLMDs to invetigate Lyme and co-inf's, treat and see good results compared to the when we only treated PANDAS and symptoms were much more unpredictable and life was a lot tougher. It takes time to wrap your brain around an additional or different Dx, but hopefully you continue to see improvement and it will all get easier.