mdmom

My 11 year old daughter was just dx with Lyme a few months ago. She has been symptomatic of "something" for years. At age 5 she was diagnosed with amblyopia -she was almost legally blind in her left eye. I am glad you posted the question about vision and Lyme. I have been wondering lately if the vision issue has been a Lyme issue all along......

I agree with momaine. My son was put on 2 steroid bursts within a 2-month time frame last winter. We thought at the time we were only dealing with PANDAS. Steroids must have supressed his immune system enough that he started having physical symptoms of what we now know is Lyme, Babesia and Bartonella. Until this time, he manifested mostly psychiatric symptoms. I wish one of the docs (there were 4) that gave him the PANDAS dx would have tested for Lyme. He is having a hard time recovering from the immune supression. Yes, I realize that with PANDAS, immune supression is necessary; however, if there is an underlying infection, steroids are a NO-NO. My hope is that it will become standard practice for docs diagnosing and treating PANDAS to test for Lyme and other TBI. When/if there becomes standard practice for PANDAS

We have had success using epsom salt baths for detoxing. My son, who is not doing very well a the moment, is now refusing the baths because they are "boring." I have to choose my battles.... In a post a few months back, someone mentioned taking an epsom salt shower. How do you do this?

We have had success using epsom salt baths for detoxing. My son, who is not doing very well a the moment, is now refusing the baths because they are "boring." I have to choose my battles.... In a post a few months back, someone mentioned taking an epsom salt shower. How do you do this?

SF Mom, How old is your older son and what types of herxing symptoms are you seeing with Mepron use? Just curious..... My son is on his second round of Mepron (he will have to do four 21-day doses in between 7 day Tindamax dosing). First round went ok. From reading your other posts, we have similar stories. We are thinking some of his and my daughter's infections might be congenital. My daughter actually tests positive for Babesia but my son has all of the clinical symptoms and a negative test. BTW, our first round of dosing Mepron was really difficult to dispense. What a hard medicine to deal with. We could not find a proper way to dispense it, so we had to use a kitchen teaspoon (not ideal for dosing exactly 1 tsp.) Doc then prescribed second round in packets - each packet is one dose. Much more portable and easier for dispensing.

My son has a similar history. What do you mean by intensive treatment?

I can barely type because my eyes are filled up and about to spill over.... I wish I could gather you all in one room for my 13 year old son to hear these experiences. His self-esteem has suffered immensely from all of his illnesses. We just uncovered them a few months ago. Until then he has been labeled with Asperger's, Autism Spectrum Disorder, OCD, Anxiety Disorder, Post-Traumatic Stress Disorder, Sensory Integration Dysfuction, Behvavioral Disorder. He has been placed in 4 different schools in 4 years. We have given up and decided to homeschool to help keep what's left of his mind and self-esteem in-tact. In some ways, I am relieved to know that there are actual antigens causing his developmental delays and psychological symptoms. I have blamed myself for years. In other ways, I am not sure it is as easy to accept his issues and move on. Now I want to fix him. Ugh. Emerson, I have read many of your posts over the past few months (I am fairly new to the forum). You are very insightful. Thank you for asking the questions for us to ponder.

Daily: Diflucan (anti-fungal that she has taken since start of treatment) Milk Thistle Crucera SGS (an antioxidant made from broccoli sprouts) Saccharomyces Boulardii (probiotic) In last 7 weeks: 1) Alinia and Zithromax for 21 days 2) Tindamax for 7 days 3) Mepron for 21 days (and after 3rd day of Mepron, added Zithromax for remainder of 21 days) 4) Tindamax for 7 days 5) Will start mycelex next week (another antifungal)

My DD11 is only 6 weeks into Lyme, Babesia and Bartonella treatment. She has the "classic" Bartonella stretch mark rash on her lower back and breasts (sorry for TMI). The marks are the reason we figured out Lyme and co-infections in my entire family! The marks on her breasts are already fading after only 6 weeks of treatment. Anyone else have such a quick response to treatment? I'm thinking it is too good to be true.

My husband and I just started being treated for Lyme (along with my 2 children). I could not afford the expensive brand-name drugs the doctor wanted to order (my children already take many brand-name drugs). Doc started us on Minocycline 100mg twice daily. Affordable abx. The only side effect we have had is a little bit of lightheadedness. She wanted to use Doxycycline but since it is summer and we are out in the sun a lot, doc was worried about the sun sensitivity that comes with Doxy use.

2 years ago I consulted a naturopathic doctor because I couldn't get help for my children's symptoms from anyone else. None of us were thinking Lyme or PANDAS at that time. She suggested that we try a gluten and dairy free diet (I can't say casein-free becuase we still use a little bit of butter) Fast forward to 6 weeks ago when my children started Lyme and co-infection treatment. They have not had many side-effects or herxing (knock on wood) from the very aggressive treatment. Our current doc said it's a possibility that our diet already reduced so much inflammation in the body and our guts are in better health that our bodies were prepared for treatment. I was so happy to hear about a big pay-off from a GFCF diet. Was it hard at first? Yes. But now it is just a part of our lives and we eat so much healthier (proteins, nuts, veggies, fruit) because there is gluten and dairy in most of the typical American diet foods. I know you need relief now from your symptoms and a change in diet may not have a dramatic effect on your current symptoms; however, it might help get your gut ready for treatment when you can see a doctor. And it is something you can proactively do while you are playing the awful waiting game. Finally, don't quote me on this, but our naturopathic doc told us that 60-70% of your immune system is located in your gut. Healthy gut = stronger immunity Hope you feel better soon.

I posted this recently under another topic and I know it's off topic from this conversation....however, Our Lyme doc told us to immediately stop donating blood and to remove my organ donor designation from my driver's license. She said the blood banks are a big source of infection with Lyme.

Under Our Skin will air in Maryland on MPT2 (or MPT Select on FIOS channel 480) on Sunday 6/26 at 4:30.

I am new to the Lyme world, but the doctor we are working with did say that Lyme does closely resemble syphillis and it can be transmitted in the same way: sexually and in-utero. You would be one of the lucky ones if you have real evidence of having Lyme during pregnancy and possibly transmitting it to your children. It is only speculation in my family's case. I know my doctor suspects this in my family as my husband, myself and my two children have all recently tested positive. I tease my husband and tell him it's all his fault since I started developing strange rashes not long after we met and now we find out that we all have Lyme. Hmmmm..... I don't believe there is such thing as TMI on this forum When you get the notes from your doc please share. I am now very curious.....

Thanks for all of the feedback everyone. Could very well be a herx. I took the advice of just letting her eat because telling her she can't is just making her go crazy. I'm also trying to be careful about not making her feel ashamed of needing to eat. She found almond butter to on GF crackers to be satisfying today, so I"m thinking she needs to eat a little more fat and protein.

tpotter....I PM'd you. I'm interested in IV abx for Lyme. amy

Funny....they are calling it a "new disease" carried by ticks. The news clip gives practically no information about Babesia, but I was glad to see that the word is getting out about one of the TBI co-infections of Lyme. http://abcnews.go.com/WNT/video/infectious-disease-ticks-13898071

My DD11 has been treated for Lyme, Babesia and Bartonella for the last 6 weeks. She has done beautifully on the treatment so far....not too many side effects or herxing. She so far has taken or is currently taking: Diflucan Alinia Zithromax Mepron Tindamax Milk Thistle Crucera SGS Probiotics It seems that when she first took Tindamax for 7 days (just finished last week), she seemed hungry all of the time. Nothing satisfies her. She even asked to come with my husband and I last night to a boring car dealership just so she could keep herself from eating. So...she doesn't want to eat, she just feels very "empty." This is not an OCD compulsion or psychological symptom (my son has OCD....I know very well what that looks like). We also eat organic GFCF, so most of what she is eating is quite healthy: proteins, nuts, fruits, veggies, very little sugar and she drinks mostly water. Someone recently mentioned to me that there is a lot of pituary involvement with Lyme. Could the pituary be causing the hunger? Has anyone else experienced hunger on any of the above meds? Is there anything I can do to combat the hunger? Thanks for any advice.

Philamom... Because of your post my daughter and I went to the fashion show yesterday. We traveled from Baltimore and it was well worth the drive. It was great for my daughter (she's 11 and dx only 2 months ago) to hear stories just like hers. Thanks for the post.

Wow. Powerful video. Thanks for the post. Our Lyme doc dx my children, my husband and myself just recently. She urgently advised us to NO LONGER DONATE BLOOD and to REMOVE ORGAN DONOR DESIGNATION on our driver's licenses. She said that the U.S. blood supply is huge factor in the spread of Lyme and other TBI.

I have a doctor for you in Maine. I will send you a private message.

PM'd smartjones and beesknees.

My children DS13 and DD11 started very aggressive Lyme treatment 1 month ago. They will start Tindamax next week for the first time. Doctor prescribed 500 mg twice a day for 7 days. Anyone used Tindamax for 7 days straight? I've read a lot about herxing with this drug and it seems most folks don't use it for more than a few consecutive days.

FYI.... Maryland Public Television (MPT) will air "Under Our Skin" on Sunday, June 26 at 4:30 pm on MPT2 channel.

FYI.... Maryland Public Television (MPT) will air "Under Our Skin" on Sunday, June 26 at 4:30 pm on MPT2 channel.