My son Ryan is now 14, in Feb when he was 13 he was initially diagnosed with JRA, in April, he was diagnosed with scleroderma and in May a skin biopsy was performed and he was positive for morphea. Because I did not want him on the toxic drugs, I found the roadback.org website in April. In May he began tetracycline, followed by minocycline 100 mg/day now 2x/day. Because of this website, I was convinced to have him tested for lyme through the IgenEx lab, his original labs were: IgG 31 +, 39 IND, 41 IND; IgM 41 + 58 + Because of band 31, I had further testing performed and it came back positive -- according to the Dr. at IgenEx, that means that he has a 98% chance of exposure. Well, today, I went to an infectious disease Dr. in Tampa and he told me there is no such thing as chronic lyme and furthermore, there is no lyme in FL. We lived in Mass. 6 years ago and I told him that I heard that the spirochete could "hide" for many years and he said that is absolutely untrue and furthermore with the minocycline he has been on, that would have definitly cured him if that was his problem. He believes that Ryan has an autoimmune disease and that we need to go back to the rheumatologist.
We are going to see Dr. J in CT in December but I don't know if I am making the right decisions for my little boy or not and he trusts me so much. Could I please get some opinions from everyone on what I should do. Thank you so much!
Sue -- Ryan's Mom
Posted by sixgoofykids (Member # 11141) on :
Go see Dr. J in Ct. That is by far the best thing you can do for your son. You will be relieved after you see Dr. J. If your son had a 98% chance of exposure and has all those Lyme symptoms, then I think Dr. J will tell you he has Lyme.
In the meantime, check out www.underourskin.com It's a movie about Lyme and the corruption in the medical field surrounding Lyme. It will explain to you why the ID doc in Tampa said what he did. He's wrong. Chronic Lyme exists. Also, there is Lyme in Florida.
Posted by secondtimearound (Member # 7249) on :
I agree with 6 100%!
Use the time now to read and educate yourself - this is one of the best places to get information so don't be shy - use the search function, the newbie links and ask as many questions as you want.
Your son is lucky to have someone that does not place doctors on that high and mighty pedestal and accept their word as gospel. Sorry but you hit a nerve - both my kids were infected and some of the doctors were just plain ignorant.
Let me know if you need any help.
All My Best, Scott D.
Posted by luvmywonderfulkids (Member # 23093) on :
Thank you so much! I just need reassurance that I am doing everything possible for my baby. If it were me, I would not have any of the fears of "am I doing the right thing" but when it is your child, you constantly second guess yourself!
Posted by Tincup (Member # 5829) on :
GO GO GO to Dr. Jones. You will be happy you did... and your child will have the absolute best.
And please tell him I said "hey"! We all love him so much!
My bet is I know the DOPE you saw in Tampa.
Dr. R? (We can't use names here.)
Never never go back, for any reason.
If not Dr. R.. there are several IDiots in central Florida area saying those things ... and they are not only wrong...
They are DEAD wrong! I have family members who died because of them saying no Lyme in Florida.
You are doing the right thing dear mom.
Good luck and please keep in touch and let us know how it goes.
Posted by Tincup (Member # 5829) on :
Yes, TuTu... Florida is ate up with stupid ducks! BIG TIME.
Not only STUPID, but dangerous! Some go directly to IDSA IDiots... Dattwyler for one... to get answers.. so it is the IDSA Garbage being fed to them.
Then you also have the "Hold the Mayo" Clinic there too... making it a nightmare.
BTW- Someone is suppose to send me an article where the Health Dept actually admitted to there being Lyme in Florida. FINALLY!
Hope someone here has it to share. Sorry I don't, yet.
Posted by Pinelady (Member # 18524) on :
You got in to see Dr. J. in Dec. Great Job.
There are things you can do to try to help him now.
Boost the immune system to prepare for the fight.
No sugar- is hard to just start so you have a little time now to find things that
will curb that sugar hunger we lymies get. You can get a lot of ideas by looking up certain
subjects in search.
Posted by luvmywonderfulkids (Member # 23093) on :
The doc was at the University of South Florida Dr. L-Z. He told me that science was on their side and did I have any scientific evidence to show him? Even my son did not like him!
Posted by luvmywonderfulkids (Member # 23093) on :
We currently have Ryan on no sugar and no red meat, we did have him off wheat as well, but he was losing too much weight. He is on all sorts of supplements (poor thing) probably 25 in all to try and reduce the inflammation and boost the immune system, also probiotics. The no sugar is really, really hard for a teenager, no soda, no junk -- I feel so bad for him. No diet soda either, that stuff is worse than the real thing. We do use stevia though --
Posted by Robin123 (Member # 9197) on :
quote:Originally posted by luvmywonderfulkids: The doc was at the University of South Florida Dr. L-Z. He told me that science was on their side and did I have any scientific evidence to show him?
Yeah, what would he like to see? We have like 1300 pages of evidence submitted to the IDSA last summer, or how about the 300-page analysis, or how about the July hearings at the IDSA site which can be watched, or how about the latest CALDA issue?
Posted by shazdancer (Member # 1436) on :
If he saw nothing else, try handing him 81 pages documenting chronic Lyme disease and explaining why the IDSA guidelines are faulty:
He won't read it through, but he probably wouldn't read anything else you give him anyway. But if he only reads the first few pages, he will get a clue that the IDSA guidelines are flawed, because it explains that the IDSA used the CDC's surveillance criteria to define Lyme disease, even though the CDC itself said don't use their criteria for diagnosis.
Let him deny it if he can.
Hope that helps, Shaz
Posted by Pinelady (Member # 18524) on :
You can find things to detox now also. It is very
important once you start killing the borrelia to
get the dead/chemicals out of the system.
Posted by luvmywonderfulkids (Member # 23093) on :
I did ask him if he watched any of the hearings but he did not answer me.
What should I use to start detoxing? He does take a UV sauna about 2x a week and we make him drink lots of water -- in the beginning he was much better with the water -- should I push that more.
I can not tell you enough how much I appreciate all the input and comments. Thank you.
Posted by luvmywonderfulkids (Member # 23093) on :
I have another question, once a band shows up positive, does it ever become negative? The ID doc told me that once he has that it will always be positive -- and that band 31 can be many different things.
Posted by Jane2904 (Member # 15917) on :
I totally agree with all the other posts. Go to Dr. J.
We have had many doctors tell us it was not Lyme. Our daughter is on Medicine for Lyme and Co and finally starting to show improvement.
Please go to Dr. J, he will set things straight.
I am so sorry your son is not well. Dr. J will help.
Posted by Pinelady (Member # 18524) on :
cells, and it can be in antioxidant vitamin forms.
It can be aided by fluids used for flushing.
Detox is not a quick fix pill. It is a fight.
Posted by luvmywonderfulkids (Member # 23093) on :
We are originally from Massachusetts! Our appointment with Dr. J is December 3 -- it seems so far away but our original appointment was in Feb. 2010 and we took a cancellation!
Do you have your daughter on supplements as well? What are her symptoms, does she have inflammation?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by luvmywonderfulkids: I have another question, once a band shows up positive, does it ever become negative? The ID doc told me that once he has that it will always be positive -- and that band 31 can be many different things.
Different tests will pick up different things. Some here have posted that they will have 3 bands on a WB and later test again and those will be gone...but 3 different ones will be in their place.
You had a confirmation test on the 31. That seals the deal. He probably isn't even aware of a confirmation test!
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