Oral antibiotics with disseminated disease?

[ticker]

Hi Bubbalyme. How old is your son? I am sorry he may be infected, but it is better to know so he can get the treatment he needs. With proper treatment, he can get better.

The best Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. He and his staff are wonderful. He sees patients from all over and he has helped many children. If you see him, you can stay at the Ronald McDonald House down the street from his office for about $15.00 per family per night.

It is not easy to travel to get the proper help, but it definitely is worth it. Many doctors will spread out appointments somewhat and/or do phone consultations in between for people who have to travel.

Hang in there okay?

[sarah92202]

Originally Posted by bubbalyme

Thank you Ticker.

Thank you Sarah.

My son is being tested on Monday. I am so worried about him being so young, but the llmd said that it is possible for him to have it.

Sarah did your son have it from birth. Did you have lyme before? I know when my symptoms began, but I don't know when I was bitten. Because I had a tick attached to me but no symptoms for years. I had a bite site after they found out about erlichiosis. We are pretty sure though that we have to change doctors. Being treated so far away from home is kind of difficult, but we think it will be worth it in the end to travel to MD or NY.

Thank you for all your help.

My son is 14, he got Lyme when he was 8, but wasn't diag. until Oct. of last year. we live in Texas but he sees Dr. Jones in Ct. We went in Oct & Jan to see him, he is a wonderful caring man. I have never met a doctor that I liked more than him. My LLMD is an associate of his in Ct. so my son and i go see our LLMD's there. If your son is pos. for Lyme you can get free flights to Dr. Jones office through Miracle Flights for Kids with a letter from Dr. Jones and then stay at the Ronald Mconald house that is a few blocks away from his office. Do you think that your son was born with LD? Is your son being tested by an LLMD? Are they using Igenex Lab? Sarah

[mere71]

Originally Posted by Bill S

YES, I've been only treated with orals, despite having disseminated disease for 2.5 years, with major symptoms and multiple relapses. My LLMD said he tries to reserve IVs for those with mostly neurological symptoms, which mine were "mild", despite significant brain fog and memory issues...

My doc put me on Vit-D3 supplements (initially 2000IU, raised to 4000IU recently), along with 6g fish oil, Tindamax, Cefzil, and Benicar. It's been working out WELL so far, albiet slower than I like. In treatment with this regimen since late December '06. I'm at about 98% of normal, with some persistent minor symptoms. My CD-57 is rising, though it's not yet where we want it to be (that'll take some months).

My doc says that the low Vit-D test results are because I have so much inflammation in my body; the Lyme spirochetes apparently go into cyst form and create inflammation around themselves as protection from the antibiotics. You have to keep the Vit-D levels up, and the Benicar regimen seems to help with both reducing the inflammation and helps keep the die-off reactions down.

Hi - are you seeing dr. M at optimal H in MD?

[mere71]

Originally Posted by bubbalyme

I was wondering if anyone has ever been treated or gotten their life back after being on only oral anti-biotics. I was wondering. I am on my six months of widespread lyme disease in my system. I am one of the lucky ones that has tested positive both ELISA and Western blot. Thankful for that.

But I am so tired and I am only new at this. Somedays I feel as if I am so dizzy, I am wondering if it is the ammonia. Other days my heart decides to do a jig all the while suffering a million other things in my body. I was seriously considering many strange thoughts this week.

But I wonder if anyone has ever been treated without IV with a six month history and been successful. I have lost all of my vitamin D in my body or am really low by the last blood test. Losing a tonne of other vitamins. Having trouble absorbing wondering if there are problems in my gut that are hurting treatment.

Dr. Pittman wants to treat the GI so better absorption will be acheived. I pray to God this will work.

I feel for everyone who has come into contact with this nightmare illness.

i am not cured yet but I am on the mArshall Protcol and I spoke to a woman who was sick with Lyme for over 20 years almost dies several times b/c of cardiac involvement and spent her 20's and 30's in bed - she now runs 3 plus miles a day and claims she is symptom free! She did the protcol for 3 years but only noticed any improvemnet after 10 mos in it - its a tough mental game to stick it out...Im getting results but its slow...I start phase 2 soon. Best wishes.

[Bill S]

Originally Posted by mere71

Hi - are you seeing dr. M at optimal H in MD?

Yes.