My husband has been experiencing joint pain, muscle loss, severe mood swing, depression and anger in the past couple years.
A couple years ago my husband had a rash on the top of his thigh which looked a lot like ringworm. He started being paranoid, thinking i was talking about him or doing things behind his back. I was on the internet trying to figure out why he has been acting this way and came across the lyme disease symptoms. He went to his doctor and aked for a lyme test and his doctor said its just depression and wanted to put him on an antidepressant. So this was a couple years ago and it's been so hard dealing with him, this isn't the man i married.
I believe my 6 year old my have lyme disease as well. Every couple months his symptoms come and go, but not completely. He has all the symptoms of autism and add. I had to take him out of kindergarten because his teacher was awful to him. She would yell at him for forgetting assignments or not paying attention. I have brought him several times to the doctor but he never got tested for lyme either.
My question is has anyone had or seen the symptoms my husband and son are having?
What do i have to do to get accurate testing and get a diagnosis?
My son has an appointment tomorrow with his pediatrian. Are the tests something his doctor can order or should i goto a doctor who specialized in lyme.
thank you
Posts: 28 | From nh | Registered: Jul 2010
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Remember to Smile
Unregistered
posted
Hi, Jeaton183. Welcome to the supportive LymeNet community!
I'm not a healthcare professional, but it sounds like your hubby and son are exhibiting symptoms that my likely be Lyme disease & co-infections.
#4 describes the psychiatric aspects of Lyme disease and #2 is for PCPs to understand what to look for when patients have LD.
I just read your other post that your son had a tick bite 2 years ago, described pains in his hands, and is exhibiting signs of cognitive issues. He is SO BLESSED that you're wise enough to seek better help for him.
Your pediatrician has already proven himself inadequate for dx Lyme disease. BUT, please do your best to be polite and not too pushy tomorrow. You may need this PCP later for some routine follow-up blood work or a referral to a neurologist, etc.
You may even be able to push for a referral to a neurologist tomorrow based on the neuropathy in your son's hands and his hearing problems. Maybe a brain MRI and/or brain EEG? Both can help define the extent Lyme may have impacted his white matter. (Keep breathing! Plaques form on our white matter, but new white matter can be produced thru art therapy, music therapy, etc.) Just keep describing the symptoms your boy exhibits, but don't say "Lyme" to his pediatrician because he doesn't get it.
Only a LLMD, LLDO, or LLND (Lyme-Literate physicians trained by ILADS) will be able to properly evaluate, diagnose, and full treat your family until all symptoms are gone.
Note that if one person is diagnosed with LD, the entire household should be evaluated by a LLMD for LD & co-infections. Lyme & co's are quite contageous. The Lyme B.b. spirochete (cause of Relapsing Fever) and a common co-infection, Bartonella, (like Cat Scratch Fever or Trench Fever but often a tick-borne gastro strain) have all been found in tears, saliva, breast milk, cord blood, urine, and semen.
Keep breathing...I kid you not -- the spirochete hates oxygen!
Important next steps: 1) Create 2 new posts in "Seeking a Doc" A) Seeking Pediatric LLMD in NH or ________(another state you'd consider since there are few LLMDs for peds) B) Seeking LLMD for adults in NH
2) Get a good night's sleep tonight. Don't expect too much at tomorrow's appt.
All best wishes, and I trust we'll see you here again. Smile
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onbam
Unregistered
posted
He needs to be treated, The rash and those symptoms means that without a doubt, he has Lyme. Don't wait for a blood test result--it will probably be negative, regardless of whether or not you have it. Google "burrascano guidelines." http://www.lymeinfo.net/medical/LDSeronegativity.pdf
I'd order these two herbs and treat with them for 3 months until you can see a doctor know to patients to be Lyme literate (if there is one, he/she can be found in the seeking doc board). I don't know much about them, but the researcher who did this is at the forefront of the field.
I know this may sound a little "out there," but there's a coverup of the realities of Lyme disease, and most docs have no idea Make an appointment with a doctor known to patients to be Lyme literate. Check out the following links to educate both yourself and your doctor until you can get to an LLMD, as well as the links in my signature.
Will pm.
Good luck.
underourskin.com undertheeightball.com lymecryme.com -- check out "treatment failure in their own words"--good to try to use to convince your doctor lymeinfo.net
Also, if someone has a study or other primary source documenting it in salva, it would be much appreciated if they would post it.
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
It's so hard to come across Lyme disease and TRULY understand the whole situation. Especially where doctors are concerned. I thought that my PCP would help me because I thought he was "different" as I've read other new here believe many times over.
They aren't "different." Most doctors do not believe in Lyme. I even had my new PCP (Worthless, totally worhtless) tell me that my doc was just trying to make money of me and that C. Pneumonie was a STD).
Please find a LLMD for both your husband and your son ASAP.
I too believe my husband has something-Sometimes I think Lyme and sometimes I think it may be related to the Army-at any rate if we could afford to have him tested through Igenex I would do it in a heart beat.
Grab hold of this Lyme situation as hard and fast as you can.
There is also a book "Healing Lyme" by Stephen Buhner and it's about herbs to treat Lyme and symptoms. I didn't believe in herbs before Lyme. But after taking only one of them it started helping my inflammation, when RX drugs aren't touching it.
It is lucky for them you found this information now before it gets worse. And the longer it goes-the worse it gets, without a doubt.
My sons appointment was today, i told the doctor what has been going on and he agreed to test for lyme. He said i am confident that if the test comes back negitive that we can rule out lyme disease. AAAHHHH!!!!
I reminded him of all the other visits in the past with the same recurring symptoms that never completely go away. I said there is something wrong with my son Please help me find out what it is....He gave me a referral to a neurologist and told me to wait for the test results and we will go from there.
when i bring my son to the doctor he acts 'normal', but thats the 10 minutes he's there. I see him all day every day, i know him and i see the changes in him. It seems like sometimes his brain isn't working. It breaks my heart to see him like this.
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
jeaton, Make SURE the doctor specifies in the test 'order' that the lab run the "Western blots" EVEN IF the Lyme "titer" is < 1. Acc. to the famous Lyme pediatrician, Dr. J of CT, 30% of all children who have "negative ELISA" tests [antibody titer <1] have a "CDC-positive Western blot"! READ the following, esp. the last paragraph: http://www.lymeblog.com/modules.php?name=News&file=article&sid=276
And Remember- he don' have to test CDC+ to have Lyme!! Lyme diagnosis is a CLINICAL ONE. Today's tests "miss about half the cases of Lyme", acc. to the research pathologist Alan MacDonald, M.D., EVA SAPI, Ph.D. (Watch 'Under Our Skin' Open Eye Pictures 2008) In fact, Dr. J feels only one Lyme-Specific band need test positive to "confirm a diagnosis of Lyme". Posts: 1233 | From Dover, NH | Registered: Sep 2008
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