5 y/o with Lyme and Bartonella - Questions on treatment and strange symptom

Hello My son was bit by a tick back on May 5th.  I didn’t notice the tick until approx 30-35 hrs after I think he was actually bit by the tick.  My son removed the tick himself, saved it and gave it to me. (We were in CT and my friend’s son also had a tick bite.  My son saw how upset my friend got when we found the tick in her son and I think that made my son scared when he saw one on his leg).   I made an appt with his pedi for the next day and gave her the tick.  In CT my friend got preventative antibiotics so I asked my pedi for the same and got denied.  My son started with a sore throat 4 days after I believe the bite happened.  I called the pedi back and she said that his sore throat was coincidental.  The next day he started with these marks on his legs that looked like bruises but they weren’t - he had between 20-25 on both legs - mainly on the leg that had the tick bite.  Again this was dismissed and I was told to speak to his preschool about his outside activities.  My son has seen several pedi's, ER drs, infectious disease, allergist/immunologist, rheumatologist, dermatologist and hematologist and has had multiple symptoms I've read about on various websites.  After several wks he was finally treated (6/18)for Lyme and Bartonella by a LLMD referred to me.   The dr put him on 30 days of amoxicillin for the Lyme and 30 days of Bactrim for the Bartonella.   My son has only a few days left on the medication and still has symptoms.  Yesterday we went for our follow up and we discussed the lingering symptoms and I asked for additional antibiotics and he said no.   He doesn’t think he still needs meds for the Lyme but believes the symptoms that are still occurring are related to the Bartonella and gave me these drops to give him to treat that.  I'm upset about this.  I've done a lot of research on this forum and I mentioned to him the recommendation of antibiotics up to 2 mos after the symptoms end.  He doesn’t agree with this.   I'm going to seek a second opinion.  I just want all of this to end and my sons health to return back to normal! My questions are: 1.) Has anyone been successfully treated with only 30 days of antibiotics that still had symptoms when meds ended? 2.) What natural remedies would any suggest for a 5 y/o?  These drops smell horrific and theres no way I will get my son to drink this (I'm to work up to 15 drops in a drink 2x a day).  These drops also cost me $90 bucks and the two antibiotics cost me $16. 3.) My son has one "symptom" that no one can explain to me and this concerns me the most.  Two wks after the bite, certain areas on his body started to turn yellowish in color.   The areas have grown in number and not one person can explain to me what is going on and what I should do.  His knees, ankles, elbows, pelvic area, back of his neck and nose are all discolored and are yellowish in color.  Sometimes his nose looks like it’s been bruised and is a greeny/yellow color.   This symptom has never gone away.  Does anyone have thoughts on what this is?  Is there something else besides Lyme and Bartonella that I should be looking into? Also, the pedi I gave the tick to never had it tested for diseases only type, gender and engorgement. I appreciate any thoughts you might be able to share for me and my son. Thanks Sons symptoms are/were:   sore throat, chills, fever, fatigue, confusion, forgetfulness, sporadic rashes over body, bruise like marks on his body, linear rashes, change in stool color (green and once black), change in skin color, behavioral issues, headaches, poor appetite, and tingling sensation.

Hi LymeMom, How blessed your son is that you are researching and making sure you get answers for everything!

My daughter was treated for Lyme a few years ago and she had some skin discoloration. Her skin turned yellow in different places, like her hands, her feet and her face. I was concerned about this and while I can't remember the source (it may have been her doctor or pharmacist), I determined it was the abx that caused the discoloration. Some lyme meds penetrate the brain barrier and can go into the skin tissue.

I def think it's a good idea that lab work gets done to make sure it is NOT jaundice, but in the meantime, you could contact your pharmacist and ask if either of the abx or combo might be the culprit.

Hope this helps. Hang in there and know your son will be fine because you are doing such a fine job advocating for your son.

Your doctor seems like he's following the IDSA recommendations which aren't sufficient.

I was on doxy for acne when i got lyme disease and it didn't keep it from becoming chronic. This thing needs to be hit hard, but on the other hand, you are dealing with it from a 5-year old's perspective so you may need a gentler but still effective approach.

I'm so sorry to hear of all you and your son are going through! Illness is hard enough - poor treatment from a doctor is the last thing anyone needs!

There's no real cutoff for when lyme is chronic - just in general, the sooner you can treat it, the better (not to belittle its importance, of course). Someone else mentioned looking at Buhner's protocol - if you go to his website I do remember reading through a few posts specifically about children and bartonella (just use the search function) so maybe that'll be of some help?

I really can't say much about the yellowing - off the top of my head I would think jaundice, liver function, or a reaction to something he's been taking.

I wish I could tell you something different, but no one has ever published a single study showing that one month of treatment is effective. IDSA guidelines should never be followed, no matter how convincing doctors may make themselves sound. I'd keep on trying to find a new LLMD - in the meantime have you looked into any alternative practitioners? A lot of times someone with a more holistic view of health can provide better insight as far as difficult to diagnose symptoms. Best of luck! Stay strong!

Hi LymeMom my son also has Lyme. I started complaining of strange symptoms when he was younger and my pedi ignored me and told me there was nothing wrong with him. He developed chronic lyme and it is difficult to get rid of. Anyway I would find a doctor who will treat your son until he is not manifesting symptoms. As Im sure you know it can progressively damage nervous system function and impact many different body systems. What is you locale ? Perhaps someone here can help you find a dr in your area. Take care.

I don't have time to respond properly tonight but my kids have-had lyme too. My two youngest have two days left of antibiotics and they were treated two months past their last symptom. However they are remaining on the ninety dollar al complex u mentioned for another six months! I live in ny and have an excellent lyme literate pediatrician in nyc I can refer to you. He is out of pocket but may be worth the price rather than waiting until october. I will email you the info. I'm so sorry you are struggling with this. Yes I would get his liver checked. It may or may not be jaundice but better to check and be safe.