posted
I've had it! My 6 yr old has been suffering for 2 years, (from lyme arthritis, gastric issues, visual disturbances), we have seen every "ologists" there is. He has been through the ringer with tests. All have their own theory. "anxiety, silent ocular migraines, reflux," or my personal favorite "maybe just a phase" etc.
My son was having visual hallucinations this summer, but they appeared to have stopped. His newest symptom is (in his words), "My eyes keep going out on me". He explained it like this. "Do you know when it's raining like crazy outside and you can't see out the window? That's what I see sometimes."
Went back to the Dr, he took tests, is rechecking his lyme (which was still positive in May 08). Dr. is sending him back to the neurologist,the same neuro that told me upon entering the room even before seeing my son, "I highly doubt this(hallucinations) is from lyme" and then went on to tell me "maybe it's just a phase."
Well, I've had it. I'm worried sick about my little guy. It is shameful that Dr's are letting my son suffer. He should be all better, he's not.
2 years! 2 years! Yeah, madder than hell...
I've given up hope on having Drs or the insurance company help my son. We're on our own.
Called and made an appt with Dr. J (CT). Appt isn't until May. Wish it were sooner, as I'm concerned about my son's vision. (The other day it happened while he was running on the playground, he crashed into a pole). But May it is. Maybe thats a good thing because it will give me time to save money.
I have had a terrible thought. What happens if Dr. J gets sick before then? Who will help my son?
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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posted
I know there is nothing I can say to make it better but I really feel for you. I can't imagine what you're going through. Good luck and I am so glad you got in to see Dr. J.
Your experience with the docs sounds familiar. They can't just say they don't know and help find someone who does.
I was never officially diagnosed with lyme but I exhibited just about all the symptoms. After experiencing the bullseye rash all over my body and getting no help, I researched rashes and decided to boost my immune system because so many are caused by viruses.
To make a long story short, the booster keeps the rash at bay and seems to be gradually clearing other symptoms.
You might look into strengthening your son's immune system. It's working for me and I'm an old guy.
All the best.
Posts: 51 | From Reno, NV | Registered: Dec 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Dr. J. is the best. I'm glad you are on your way there.
In the mean time since you have to wait, I wonder if you could find a good naturopathic physcian in your area who could help with homeopathics.
Many people have had good results with some of these gentle remedies, and they might keep your son improving until he can get to Dr. J.
Also, Lightworks is helping lots of people. This is something you could do at home while you have to wait. Then maybe you could see some progress and you wouldn't have to feel so helpless.
I'm sorry you are going through this. I don't know anything so difficult as to see your child suffer without being able to help. To have a physician deny what you know to be true as a mom is an ultimate frustration.
Hang in there.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
sent you a pm
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
May is a long time off and maybe you should contact MA support groups and see if there is anyone who could help him sooner, but still keep your appt. with Dr. J. If you found someone else, that would get treatment started, and if you liked the doc, could ask for a consult with Dr. J, who does this a lot. Or switch if you were not satisfied with the fill-in doc.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Sorry, I can't believe that this is still going on? it makes me want to scream. How can docs be so arrogant and stupid it's beyond me. We really need to unite and somehow demand some answers for this incompetence that surrounds Lyme. It really ****es me off when I hear young kids with this horrible Disease you really need a specialist when it come to children with Lyme. Dr. J is real good Doc i hope He is training someone to take over for Him when He retires.
Posts: 128 | From web | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
No no no...
If you will contact me by email and send me the link to this post.. to help me remember... I will send the name of another doctor... an eye specialist.
You don't want to wait with vision problems. PLEASE don't wait.
It will require a trip out of state.. but insurance is ok. We need to get this ball rolling ASAP.
posted
I know this post is old. But what is the update on your son? Could you explain his eye problems? They sound maybe similar to my son's and he was just diagnosed with Lyme.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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