Desperate for advice - Ohio

I've been reading on here for quite some time but never posted. Two years ago my 11 year old out of the blue started to cry and roll up in a ball after school and cry herself to sleep. My journey began there. She already had anxiety and migraines. We could barely keep her in school they kept sending her home because she was falling asleep or crying in pain. Then the never ending visits to every specialist. Everyone put her on a medication for something. 9 months after they diagnosed her with active Hashimoto's. I had been asking them to run a Lyme test but they never did until 9 months later. She came back positive Western Blot IGG 41. They said it's not Lyme. Frustrated with the hospital here, who now wants to send her to a pain clinic to learn to live with the pain, I went to another hospital for a second referral. BTW current hospital basically yelled at us that she does not have Lyme and whoever is telling us that is lying. The second opinion said she has Ehlers Danlos Syndrome - Hypermobility class III (which was suspected) and now they want her to have a POTS test and bone density test to rule out osteoperosis and to consider it could be fibromyalgia.

I stepped outside the "norm" and saw a biomeridian MD. He ran his two hour test and she was positive for Borrelia, Bartenella and Babesia and a few other things. He started her on Diflucan, Doxycycline, Cholestyramine, Prevacid and detox tea. I have not started the treatment and am so conflicted. All of her doctors are now housed within the same hospital even her primary because they wanted to work together to find out the problem. They think I'm crazy for sure.

I really am tempted to do it but she's 13 years old and this is a machine that reads your meridians. I don't know if I trust the machine. I need her to have a quality life with friends and a social life. She rarely leaves the house except for doctors appointments. She's been too sick to attend school so now she's homeschooled. The less she does or moves the more she seems to tolerate symptoms but if she does get up and do something even after her doctors appointments she's exhausted and angry and feels awful.

Any advice I would greatly appreciate.

Sherri

Hi Sherri, I am so sorry you are going through this with your daughter. I cant imagine how hard it must be. Is the any chance you could find a Lyme literate doctor near you? During my first year when I became sick I saw every doctor in my area and even went to Stanford but had no answers except maybe it fibromyalgia or hormones!!! I even saw a few hypnotherapist, one of them could totally relate, they said there daughter became ill with all sorts of strange symptoms and they also went to every doctor they could get her to only to finally see a llmd, she was positive for Lyme and began treatment right away she began to improve and within a year all her symptoms were gone. I too had a doctor yell at me saying I don't have Lyme, we tested you and it was negative! So there is way too much controversy over it for sure, sure hope that changes eventually! I'm sure you'll get some good responses here from some more experienced members but if I were you I'd try to ger her to someone who understands Lyme. If you don't decide to start her on the treatment before then then perhaps try to eliminate gluten and really low sugar, see if that helps at all. I wish you the very best of luck, watching your child suffer is just the worst! Take care!

I actually just received an email from ILADS with a referral very close to me. One month before these symptoms she went to an animal and science camp in Rolla MO for two weeks. They were with all kinds of animals. She was quarantined for two days because of a fever and they even took her to a doctor who said she had an ear infection. This was the first time she ever left home. I haven't tried epsom baths but I was reading about it earlier on here. I will do anything to help her feel better.

Ok, so that sounds very suspicious! If she was totally healthy before this then I think it is logical to think that she picked up something there. I pray you find a good LLMD to sort all this out. The good thing is that she has age on her side.

I would also look into something like brucella - which is similar to bartonella.

What part of Ohio are you in?

Ok, there is a well-known llmd there which is probably who you called - Dr. P D

sherpal said...
Holding off on all of the antibiotics. I'd love to do this naturally.

That sounds like a smart move. If she's been sick for 2 years, there's no need to rush into treatment. Weigh your options and proceed when you feel comfortable doing so. I was sick for 7 years before I knew I had Lyme. The doctor wasn't sure if my Lyme was active or not, but she offered to treat me with antibiotics (no mention of herbs). I agreed to 30 days of minocycline to see what would happen.

What happened was I got worse and was told to stop after 7 days. I continued to get worse after stopping and experienced more disabling symptoms than I'd ever had before.

A couple of months later after doing my own reading and researching, I decided to treat myself with herbs using Stephen Buhner's protocol.

I wish I had known I had options before I agreed to try that antibiotic.