Topic: Oh Dear God, I Can't Take It Anymore!!!!!!!
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Well, my middle son was diagnosed on the autism spectrum two months ago.
My LLMD strongly recommended a Western Blot. I went ahead and got the IGeneX test. Here are the results:
31 IND; 39 IND; 41 +++; 58 +.
I'll be showing this to my LLMD next week. What do you all think? Besides being on the high end of the autism spectrum, he has no symptoms.
I have three sons. I think, with my oldest having Down syndrome/autism combination and my youngest having Lyme (though currently symptom-free), and now my middle just being diagnosed on the autism spectrum and getting these Western Blot results, that I am ready to LOSE MY MIND.
The only thing I'm "glad" about is that my youngest two are not severely affected. But they might be someday.
I have never had my oldest son tested for Lyme. I wouldn't be surprised if he ended up with evidence of exposure, too.
I feel exhausted. I feel defeated. And I've just learned that my oldest sister is dying of pulmonary fibrosis.
I'm at the rim of too much to handle, Lord.
Thanks for listening. Like I said, my LLMD will be interpreting the results very soon.
- Lymelady
P.S. - Sorry for the depressing post, but who else but you can understand????
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
May God grant you strength and wisdom.
Posts: 65 | From Burbank, CA (recent) from Midwest | Registered: Apr 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I'm so sorry. I understsand... WE understand.
I'm seriously starting to believe that everyone has been exposed to lyme at some point, but a good portion of the people have immune systems that are able to keep it at bay or from showing too many symptoms the majority of their life. And then there's the people who are sick and very symptomatic because our immune systems couldn't fight it or might have for as long as it could but finally gave up.
I'm getting my husband tested because he has a few symptoms that are starting to worry me. I won't be surprised if he comes back positive.
It makes sense to me that most people, if not all, have been exposed to lyme (bitten by a tick or flea or mosquito) at some point in their lives.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
wow-is your family ever going to be able to stop for a breath?
i'm so sorry to hear about your sons. good luck
Posts: 368 | From freehold, nj | Registered: May 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Is it congenital Lyme?
I want you to know that I personally know a lady here in MS that had lyme unknowingly for almost twenty years misdiagnosed as multiple sclerosis.
During that time she had three children - all boys that she passed lyme to.
Two of three were diagnosed as mildly autistic and the third severly autistic with many learning disabilities.
All three made a complete recovery through antibiotic treatment!!
They are now happy healthy children!
Hang in there! There is hope!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Sending you prayers of comfort and support.
Hang in there.
I think it is worth investigating (Lyme).
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
sorry you are going through so much.
I know there have been articles written about how some think there are connections between lyme and autism. Hopefully your llmd will have some insights/ suggestions.
posted
God bless you - I can't imagine the stress.
I'm not sure what to say other than I DO believe there's a reason for everything. And a much higher purpose. And you must be an amazingly strong person. And if you ever want to vent this is a great board to do so... Or if you ever want to chat privately feel free to p.m. me.
You will be in my prayers tonight.
Allison
Posts: 43 | From Chicago | Registered: Mar 2008
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I am sorry you are going through so much. I am sure your LLMD will have some ideas.
Are your other children being treated? Have you tried the gluten, wheat free diets that some with Autism are on? Good fot Lyme too. I am sorry if you have said but I am not familar with your history.
There is a link between Autism and Lyme. You are on the right track.
Vent anytime. You have been through alot and we understand.
Posts: 262 | From nj | Registered: Dec 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Lymelady, just saying hello and I hate that you are facing so many struggles. You and your boys are in my thoughts.
Posts: 1173 | From USA | Registered: Nov 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Lymelady,
I am so sorry. When it rains it pours in life it seems.
Moment by moment, try to focus on the good in your life, like your son who is not symptomatic.
My son has LD, my husband, my sister, my niece, my brother in law..it is breaking us and the compilation of problems are enough make anyone feel like they can't take it.
I often listen to Joyce Meyer (a very down to earth minister) she has kept me from the pit of despair with her messages. The link to her message today was very powerful called 'No Way? Yes Way!' Just a suggestion, but if you have Windows media this link will open to her message - it is worth listening to - hopeful, as always: http://tinyurl.com/57752a
I try to remind myself, the task ahead of me is not as as great as the power within me.
posted
.. lymelady, my heart goes out to you again!
yes, i too when reading your post thought immediately of CONGENITL LYME for all 3 sons!
autism/lyme are misdiagnosed. an iowa woman, biting back, had a 7 yr. old son dx with autism and many other things.
we took him to missouri's dr. c who treated him for lyme; possibly co-infections; memory has forgotten.
she wrote me, "she got to meet her son for the 1st time, and what a different boy he was after being treated". he made a lot of progress and then setbacks. she stopped emailing so don't know any more details. just an UPPER example for you!
praying for you and your 3 precius sons! best wishes and hang in there.
come here anytime to vent, cry, or to LAUGH...see lymetoo's LAUGHTER POST; over 200-300 jokes/stories. if you're down, come there ok ... in SUPPORT! I've added 98% of things. ***********************
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
A Lyme specialist doctor will treat him for Lyme, which just may be the cause of his autism.
There's hope.
God Bless.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I too was recently diagnosed with lyme, results pretty similar. I found a llmd pretty close to home which started me on a extreme amount of abx.
Found out that Probiotics are a must!! (thanks to everyone on here). My head is in such a fog, it was hard for me to remember if my llmd spoke of this. So thankfully. My new found family helped me throug.
But we also have other things in common. I have 3 wonderful kids, and my son Dereck was diagnosed with Aspergers, BiPolar disorder, and ADHD, with a learning disability. He is very aggressive (especially with my 4 year old son).
My 9 year old is currently seeing a specialist but not much help as of yet.
I have a very old friend whose daugher was born a healthy baby girl, but after having her mmr turned severely Autistic.
He is the president of Fair. His non for profit org has alot of new up to date info.
posted
I'm so sorry to hear this! What a terrible thing for your sons and your family.
I too, would have him checked by an LLMD. Lyme is a REAL possibility. Congenital Lyme would be possible.
Love and hugs coming your way. Take care of yourself!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thank you, thank you for all of your wonderful, helpful posts.
I'm still reeling and on the verge of tears nearly every minute, but something has clicked inside and the fighter in me has come out.
Honestly, I've had pretty much a crappy life for the past 41 years and I'm sick of it. I am willing to reach for and commit to ANYTHING I can do in my power to make the future better/more bearable.
My LLMD suspects I've had Lyme since I was young and now I think she's right after getting my son's Western blot. It was AFTER he was born that I got bitten by the biggest, fattest tick ever seen, and when I got extremely ill. But, I've had symptoms going back to an unexplained swollen knee when I was 7.
I wonder if my severely autistic/mentally disabled oldest son would benefit from antibiotic treatment. He has been on antibiotics many, many times since his birth. My LLMD once confessed she didn't know if she could help him, so I don't know.
I will read over all the posts from you kind, thoughtful people and gather and use all the information provided. Thanks so much, again!
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Angelica
Unregistered
posted
Sending healing thoughts to you and your family for speedy answers and quick healing.
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I am thinking about you. You have so much to deal with. Do not give up, we are pulling for you.
Posts: 262 | From nj | Registered: Dec 2007
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posted
Lymeladyin NY- Please know you and your family are in our prayers. We all understand how frustrating and difficult this all is.
As Mother Teresa said: "I know God gives us only what we can handle. I just wish He wouldn't trust me so much!"
Believe me, we all have our moments, especially when everything bad happens all at once (and it usually does!).
Just take one day at a time - you're doing the best you can and you certainly have enough to deal with.
Perhaps Doc J in CT can help as he spoke at a Lyme/Autism conference, if I'm not mistaken. Don't give up - things WILL get better! Posts: 9020 | From Illinois | Registered: May 2006
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Have you heard of the book "The Puzzle of Autism"? Its author, Amy Yasko, found that 100% of autistic children have a defect in a biochemical process called methylation.
My LLMD told me briefly about methylation defect, as it also affects people with CFS and Lyme disease.
Here's what I found on methylation:
``Methylation is essentially the process your body utilizes when dealing with folic acid. Part of this process assists cells as they divide or repair themselves. Additionally, methylation provides some protection from many toxins at the cellular level. Any failure of the methylation process causes problems dealing with toxins.
The "working theory" is that excessive toxic exposure (especially to mercury) exacerbates the methylation defect, causing the cognitive problems to appear, along with a host of other bio-systemic problems.
One likely source of the toxic load, especially in children, appears to be the compounds used in vaccines (vaccination is the process of injecting toxins, including bacteria or viruses to stimulate an immune response), especially thimerosol (a mercury compound).''
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