mimip

Wow, your daughter's symptoms are so similar to my husband's!I knew about Lyme from my former boss whose daughter was in the movie Under Our Skin. She was helped by Dr J in CT. At first we didn't think he had Lyme because he primarily had respiratory problems, but by the time we saw the infectious disease specialist and rheumy we were sure it was Lyme and at least Bart and Babs as well, but didn't have any proof. My husband got sick on Sept.10th and had flu-like and respiratory symptoms. On Sept 22nd he was dx with bronchitis and given a Zpack and Advair. He rapidly got much worse with migrating joint pain, skin pain, headaches, photosensitivity, difficulty standing or walking, dizziness, inability to control body temp, nausea and vomiting, mental confusion, chest pain, anxiety, muscle spasms, etc. On Sept 26th he was dx with Lyme by clinical presentation by his primary care doc. He was given 10 days of Doxy and told he would be better by then. He instead got worse and developed a rash on his legs, severe leg swelling, and horrible, profuse night sweats in addition to the other symptoms. Way too many symptoms to list. On Oct 4th we returned to the doc who called in an infectious disease specialist. They took away the Lyme dx and tested for Legionaire's Disease (it was negative). His bloodwork came back at that time with sed rate at 100 and CRP at almost 170. We were then sent to the rheumatologist who dx the rash as Erythema Nodosom Migrans (consistent with Bartonella). He felt it was Lupus or Sarcoidosis but also reluctantly did a Quest Lab Western Blot for Lyme and tests for Mycoplasma, Babesia, and Anaplasmosis. He wanted him to stop abx and start oral prednisone but we refused until Lyme results came back. He said he did not believe it was Lyme or any co-infections. When his results came back he was neg for Lupus (although some labs were consistent with Lupus, it was ruled out) and Sarcoidosis, and positive for Mycoplasma and Anaplasmosis. His Lyme WB was CDC neg but there were some positive bands, and Babesia came back negative. At that point his sed rate and CRP went up to 105 and 185.2. The rheumy felt there was no chance of Lyme and felt it was more likely Lymphoma, but at least he listened to us and was very open to learning more. On Oct 19 we finally got in with an LLMD and Plaquenil and Zithromax were added. A month later the Zithro was changed to Biaxin and that's when he really started to feel better, but still with symptom cycles. It was mid Nov when his bloodwork was re-done and his sed rate and CRP were back to normal. He still has symptoms but a lot less. So, yes, he did get worse while on treatment but then better. He did not have an LLMD at all until 1 month in to being sick so through the worst of it we were basically on our own. We were never sure if he was having a bad herx, it was from the infections, or both. If we had had an LLMD at the time it probably would have been a lot more controlled of a course of treatment. A lot of his symptoms seemed to be from Bart- Erythema Nodosom, GI, GERD, anxiety, stabbing pains in the shins and soles of the feet, presenting like Sarcoidosis, presenting as Lymphoma, etc. We've always wondered if his elevated sed rate and CRP were from an autoimmune respose, or from Lyme or a co-infection, especially Bart. It now makes me wonder if it is the Bart with Erythema Nodosom Migrans that corresponds with the high sed rate and CRP. If Dr J suggested a rheumy I would trust him, but you might mention to Dr J about the similarities with my husband's Bart symptoms and elevated rates and see if that is something he's noticed. Sorry this is so long, but I hope you find his story helpful. I would have responded sooner but my 9 year old daughter appears to have PANDAS and we are trying to get help for her. I hope your daughter is doing better. I feel for you. Hang in there! Hugs, Mimi

Thank you to everyone for the advice and support! Michiganpandas: She does the exact same thing- stays in my bedroom and watches TV. Great advice on eating because she does seem to get more nervous with even suggestions of eating. Since she does some unusual things while eating (licking food, taking food apart, spitting during and after eating and drinking, etc), I think she prefers to eat semi-privately. We have a large family, 6 kids with the yougest 5 at home (oldest is an adult) so I think the chaos of the other kids running around makes it harder for her. tpotter: Great suggestion on printing out those materials. I'm just so frustrated with the medical community right now. I feel totally abandoned. But I think having solid medical information will help a lot. I have been getting too worked up to state my case clearly and non-emotionally. When my husband got sick with Lyme and the 3-4 other TBI in Sept I called around the entire Northeast for an LLMD. We started seeing a nurse practioner who works with an LLMD who sees adults but is primarily a pediatrician. My husband had been planning to switch to his care when my daughter got sick. I should be able to get my daughter in to see him soon. In addition to seeing Lyme patients and being a primary care pediatrician, he is an environmental medicine specialist and he also has experience with PANDAS.It's amazing how similar the experiences of trying to get help for my husband for Lyme and trying to get help for DD4 now are. The only difference is that now my husband is well enough to help with my daughter, but when he was sick I was more alone. colleendonny: Yes, we are in MA too, Boston Metrowest area. I'd love for you to pm me if you know of any resources in the area. I'd also love to get together or go to a support group meeting if there is one close to me. On the one hand I feel like I figured out what was going on pretty quickly, but on the other hand I'm upset with myself for not figuring it out sooner. I had heard of it when my oldest son, now 22, was younger. He had repeated strep and anxiety, OCD, and eating problems. His symptoms weren't as severe or sudden though, so I dismissed the idea. Suzanne: Thank you so much for validating my thoughts on it being PANDAS and for the virtual hugs. Sometimes it is so hard not to doubt yourself, especially while medical professionals aren't listening or are telling you something else (she just needs to go to a dietician to tell her to eat right, the antibiotics should have cured it, etc). I agree that we need some labs. I couldn't believe her ped wouldn't run any. Sending virtual hugs to you too. bulldog24: I'm interested in the study but DD4 is allergic to penicilin/amoxicilin. Do you know if that excludes her? Congratulations on your son's recovery! I'm trying to go day to day right now but sometimes I think ahead and hope she will get better, while worrying that she won't. gunillafromsweden: Oh wow, I didn't realize that about short term abx. This really reminds me of the fight to get abx for my DH. In fact DH has some Azithromycin left from when he switched to Biaxin for Lyme and we briefly, out of desperation, thought about giving her some. She needs liquid too and they are pills. Thank you again to all of you. I've found with anything like this that the support of other parents to be the most helpful. Stories of getting better help us stay hopeful and keep us going. It's just helpful to know you aren't alone. I'm thinking of all of your families as well and sending warm, healing thoughts. Mimi

Hi, I'm new here and looking for some advice. My 9 year old DD4 presented with symptoms 18 days ago. It was a particularly stressful time and in the midst of a complete meltdown by my 13 year old DS2, DD4 had trouble swallowing a gummy candy. It sent her into a full blown panic attack that lasted hours and included dilated pupils, hyperactive pacing, frequent urination, shaking, extreme sensitivity to sound, feelings of impending doom, feeling like she couldn't breathe, etc. We figured it was the stress of everything at home and a stressful incident at school. The next night the same thing happened- difficulty swallowing followed by extreme panic attack. The next day the anxiety and panic lasted all day and included abdominal pain, separation anxiety, fever, severely restricted eating (only tea and bananas),vomiting, congestion, constipation, trouble thinking/deciding, and refusal to sleep alone. This continued the exact same way for the next 3 days, except the food she was willing to eat changed each day. Then we brought her to her pediatrician. Her fever had broken by that time. She had lost more than 2lbs. By this time she was eating basically nothing and had an extreme fear of choking. The doctor felt that there were 2 different things going on- a viral infection and anxiety. I asked her to do a Lyme Disease test because my husband had been diagnosed with Lyme Disease, Bartonella, Mycoplasma, Anaplasmosis, and we strongly believe Babesia as well, in Sept. My DD4 also had had an embedded deer tick a few years earlier.The pediatrician refused to test her for anything and sent us on our way. Her symptoms continued including strange eating habits, like pulling all of the cheese off of pizza and licking the sauce off, and spitting repeatedly after eating and drinking. She also complained that her handwriting was too messy, seemed to be less coordinated, became obsessed with food and started making food for others, started with repetitive throat clearing and a repetitive head roll, etc. I came across info on PANDAS online and thought it sounded like it might be what was going on. I brought her back to the ped and pleaded my case. She lectured my daughter and told her she was upsetting me with her weird eating habits. That wasn't true because I just wanted her to eat and didn't care how she did it. My daughter cried because she said she is trying really hard and wants to eat. The ped reluctantly gave her a rapid strep and a throat culture. The rapid was negative so we were sent on our way again and told to follow up in a week after the ped's vacation. Two days later the office called and said the culture came back positive so they had called in a script for Azithromycin for 5 days. My daughter had a lessening of symptoms around the time of starting the antibiotics but they didn't go away completely. After the 5 days her symptoms started to worsen again. There is a specialist I want her to see but I needed to change health plans and ped's, which I did. The new ped, who I need her to see for a referral to the specialist, is also on vacation. The receptionist said she didn't think DD4 was considered "urgent" and said we could wait 2 weeks for an appt. I finally talked her into an appt with the nurse practitioner and we have that appt in a few days. Now we are at the point where my daughter is not eating anything, and we are having trouble even getting her to drink a Pediasure. She is terrified of choking. She constantly throat clears and is basically glued to my side. She is unable to go to school, which she normally loves. My biggest things right now are trying to get her to eat and finding out if it really is PANDAS or PITAND. In addition to her positive strep, she also has a neighbor who just had pneumonia (maybe Mycoplasma), another with strep, and another who had strep and mono symptoms but her doctors can't figure out what it is. We are in a highly endemic Lyme Disease area too. My daughter had also just lost a tooth and had an abscess around the time her symptoms started. Both sides of her family have histories of frequent strep including Scarlet Fever and Rheumatic Heart Fever, as well as anxiety and OCD. I still keep doubting my gut feeling though. Also, any advice on how to get her to feel comfortable enough to eat? Thank you for reading our story. Any thoughts would be appreciated. Mimi

Hi, I'm new here but I saw your post and wanted to reply. My husband's sed rate and CRP were both very elevated for an extended period of time. His sed rate was 105 and his CRP was 185.2, both should have been under 10 or 15. Many doctors didn't think it could be Lyme because of those numbers. They thought he had Sarcoidosis or Lymphoma instead. Turns out he was positive for Lyme, Mycoplasma, Bartonella, Anaplasmosis, and we strongly believe Babesia as well. Once he got on higher doses of antibiotics both came down pretty rapidly. They were elevated for about 2 months, and may have continued to stay elevated if he didn't start on more medication (Doxy, Biaxin, and Plaquenil). Lyme can cause elevated sed rate and CRP, but there are others with Lyme with normal levels. My husband also had strong Bartonella symptoms which can present as Sarcoidosis and Lymphoma, so I wonder if Bart can cause elevated sed rate and CRP. Has she had any co-infection testing? Basically, they are just makers of inflammation and can be elevated with many conditions. When we first saw his elevated rates he was taking just Doxy, but it is possible it was enough for him to Herx, which can also elevate those numbers. I would be careful going to a rheumatologist for Lyme because there is a tendency for rheumatologists and infectious disease specialists to dismiss Lyme and other co-infections. That was our experience with both anyway. Maybe try to find a lyme literate rheumy. Even some LLMD's were surprised at my husband's high levels. Do you have an LLMD? Good luck, Mimi