My sister and I have both been diagnosed recently with lyme. My son has been having symptoms. Saw a doctor yesterday who treats lyme and he ordered the Fry test. When we got home my son's legs became shaky and weak. He can hardly walk! If I knew the regular medical field knew about lyme I'd rush him to a hospital but I know they wouldn't know things such as no steroids, and anything else someone who may have lyme can't have. What should I do???
Posted by glm1111 (Member # 16556) on :
They may not know about Lyme, but just in case it's somehing else, it would be a good idea to have him checked out in the ER. That's what I would do if it were my son. At least they could rule other things out. Can you have him tested by your LLMD ASAP?
Gael
Posted by lymielauren28 (Member # 13742) on :
That's a tough one. I'm sorry for all that your family is going through right now. How old is your son?
It looks like you're already off to a good start by getting him in to an LLMD and having him tested. In the next few weeks while waiting for test results just have him take it easy.
No sugary/starchy foods or drinks - these things can trigger symptoms or make them worse. Reassure him! Some natural things that you can pick up from your local health food store that can help are coconut oil and olive leaf extract. I hope that helps. Keep us posted!
Posted by jlf2012 (Member # 36002) on :
He's 25 yrs. old. His hips are hurting badly also. Are these symptoms of lyme? I haven't experienced these symptoms myself. Other than no steroids what else would I need to be sure they wouldn't give him or do in the ER in case it's lyme?
Posted by lymielauren28 (Member # 13742) on :
My hips used to hurt a lot - that was one of my first symptoms. They would go from a dull ache at best to sharp, stabbing pains at worst. Leg pain and weakness are also common in Lyme disease and particularly coinfections.
Posted by glm1111 (Member # 16556) on :
Is this the first time he has exhibited these symptoms? Has he had any other health problems or symptoms?
Gael
Posted by jlf2012 (Member # 36002) on :
He had dairy reactions around age 18. Last fall was diagnosed with GERD. About 4-6 weeks ago tons of symptoms came up - sweats, panic attacks, vision problems, exhaustion, etc. He's barely been able to work within the past month and Monday he passed out at work. PC doctor was treating him for anxiety/depression and ran normal blood work which all came back okay. I had suspected lyme so made this appt with Dr. H. ( who isn't an LLMD but studies and treats it) at least to get the ball rolling. He also takes insurance. I will probably have to eventually get him into my expensive ILADS trained LLMD. But this doc was on Ann's list and close by with only a two week wait so this is where we started. I called them today and the doctor is thinking my son should see a neurologist also to rule other things out. OH GOD, help us all.
Posted by glm1111 (Member # 16556) on :
It's also a possibility that he has a parasitic infection which can also be a co-infection of Lyme. Check out the symptom list at Humaworm and also google parasite symptoms.
Even if he tests positive for Lyme, treating him for parasites long term is important. Only some LLMDs are aware of this co-infection so you might have to treat him on your own.
Do a search on here for parasites also. Sorry you are going thru this. Watching your child suffer is the worst, but with proper tx he should regain his health.
Gael
Posted by hammer (Member # 17201) on :
I would definitely follow through with the neurologist, especially since you are lyme aware and won't panic over what they might call all of his symptoms -- you still need to rule everything out.
Having said that, my daughter had all those same symptoms plus many others -- and all normal labs. Many of those symptoms resolved fairly quickly with treatment. She is still treating and has almost survived her first year at college (2 more exams!).
Posted by hopingandpraying (Member # 9256) on :
I would get your son to a LLMD a.s.a.p.!
Posted by Rumigirl (Member # 15091) on :
Agree with hopingandpraying!!
If you take him to a neuro, find a Lyme Literate one, if you possibly can. There are a few. Post in Seeking a Doctor.
Posted by jlf2012 (Member # 36002) on :
Thanks for the info manybites. What was your treatment protocol that was working for you? Are you back in treatment now?
Posted by nefferdun (Member # 20157) on :
I am really sorry your son is so sick. It is a good thing he is willing to listen to you.
Diagnosis is not simple There are always co-infections. You need a good doctor to figure out what infections is dominate at the moment.
You cannot get well without strict comprehensive dietary support. No alcohol, sugar, red meat or processed refined foods.
90% of us are testing positive for the Fry bug, FL1953, Protomyxzoa. This requires a whole foods low fat vegan diet to recover. I have been on it about 6 weeks and am much better.
Babesia causes anxiety/depression/weakness/lack of concentration/ memory loss etc Methyl cycle mutations cause auto immune disease, allergies, depression, anxiety, dementia, stroke, heart attack, addictions etc. Fl1953 causes anxiety, profound fatigue, auto immune disease, insomnia etc
Is it babesia - how much does he sleep? Babesia makes you over sleep. If insomnia is present with auto immune reactions and profound fatigue suspect FL1953.
Fact is, all of these are often present. You need to address everything. If you do this right from the beginning, you will get him better much more quickly.
Best of luck.
Posted by jlf2012 (Member # 36002) on :
Thanks so much everyone. My son saw a neurologist today to rule things out. An MRI was ordered. The doctor wants him to take lyrica for the leg tingling/weakness. Are any of you familiar with lyrica. I really think he has lyme disease. Blood test has been sent off on that. Just a waiting game now but I don't know about this lyrica.
Posted by mlg (Member # 35383) on :
Hi,
Sorry for what you are going through. I am not a doctor but I know of some people taking colloidal silver and you might want to try while you wait to see the doctor.
Posted by mlg (Member # 35383) on :
Also juicing!
Posted by Catgirl (Member # 31149) on :
I'm no doc, but this definitely sounds like lyme and company. I would find an LLMD fast.
It takes a specialist who follows the ILADS protocol (they are cutting edge (International Lyme and Associated Diseases Society). Anyone else really doesn't have a clue--they simply haven't been trained to even identify chronic lyme, so you'd be wasting your time with them.
They will find everything else wrong, BUT lyme, when in fact, what he is experiencing sure sounds lyme related). Also, the best docs don't take insurance.
You can find an ILADS specialist at www.lymediseaseassociation.org. You can also post here in Seeking, but you will have to double check to see if they follow ILADS.
Posted by kelmo (Member # 8797) on :
Sounds like pain my daughter had when she was first sick. I'm sorry your son is in so much pain. It would be a good idea to be checked to rule out anything else. If everything comes back "normal", then I would look into Lyme and friends.
Posted by lpkayak (Member # 5230) on :
i hope you know if the neuro is sending out elisa it if is neg it means nothing
even a neg western blot doesnt mean much---im not sure how much you understand about the testing...but there really is no way to rule out lyme by tesing
i think lyrica might be used for fibromyalgia...and might help...but i would try neurontin first. its and older drug. many of us use it. when you use a new drug its hard to know what the side effects really are...sometimes using it once can hurt you