Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My 18 year old son was born with Lyme, unbeknownst to me. He has struggled severely his entire life with extreme neuro Lyme and physical Lyme as well. He has severe ADHD, PANDAS, and CVID. He had to go to a special school because of his out of control behavior. He has been on psych meds since about age 5.
He was completely uncontrollable; the kind of kid no one invites to birthday parties; no one will babysit, and everyone stares at you in stores thinking you are the worst parent ever.
After years of on and off treatment, we finally were able to get him to a new Lyme doc who took Medicaid and was willing to treat him. I'd been carting him all over the place trying desperately to get him treated. He was treated several years ago by Dr. J and did well, but needed longer term treatment and we didn't have the finances.
With the new doc, he was put on 10 months of IV antibiotics; Zithromax and Flagyl; both IV. He infused for 3 hours a day, and had to get up at 5 am to infuse before school every day. It was a very tough 10 months with two PICC line infections, horrible skin breakdown, two instances of anaphylaxis; but my son was a trooper and he kept plugging along.
After 10 months his liver functions were off the charts and wouldn't come down, and he had seemed to plateau, so the line was pulled.
The difference in my son this past year is remarkable. He went from a failing student who was often in trouble, repeating his Senior year, to an honor roll student every single quarter. He got straight A's and B's all year, and even won an Art Award at Senior Night.
His teachers said they have never seen such a transformation; that he is a new person.
I'm not going to say the IV completely cured him; he still has some ADHD but he can control it even without his meds; he still has insomnia and some fatigue; but every bit of his pain is gone and he is neurologically drastically improved.
Please have hope. He did not change his diet or do anything other than IV antibiotics and a few basic supplements.
My 24 year old son was cured after being horribly sick and bedbound for years as well. He is now a fully functioning adult who even joined the Army and made it through Basic Training. In fact he was just promoted to Sergeant. He is in full time Paramedic school and works full time on an ambulance besides being a Sergeant in the Guard.
There is hope. My kids were honestly about as bad off as kids could possibly be. Now they are embarking on bright futures! My 18 year old starts college in the fall.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I'm so happy for all of you that he's doing so well.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Oh Tracy -- Wow!
Thank you for posting, we moms need to hear it.
Amazing how incredibly difficult it is to heal the congenital kids, how deeply they are affected. God bless.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Whew, what incredible strength it took to get to this point. You all deserve a gold star for courage. So glad to hear this.
Now if only those dopes in charge of our health agencies would stop trying to prevent people from getting the help they need, and the other liars would be discredited and slink off, never to be heard from again.
It is hard to see injustice on such a massive scale and not be outraged. It should never have gotten to such a horrible situation for your family. Just think what could have been avoided with a better educated medical establishment and good tests.
[ 06-29-2014, 12:57 AM: Message edited by: Robin123 ]
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Such great news!! Thanks for sharing Posts: 486 | From USA | Registered: Jan 2012
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Thank you so much for your well wishes! All four of us were completely disabled by Lyme. My husband and I are on disability and have been for years; and I have had a lot of complications and was subsequently diagnosed with several other things (all stemming from Lyme) including a very serious, rare, incurable autoimmune neuromuscular disease.
Despite that, after doing 16 months of IV, I improved greatly. I have gone from being completely bedridden all of the time and totally unable to care for myself to having some good days in which I can function, get up and do stuff, and even go out sometimes. I still have lots of days in bed but it's much more now due to the Myasthenia Gravis.
I can think again, I am doing some online work, I set up my own meds, I play my voicemails, and I open the mail. I can even cook and drive sometimes. I am sure some of you will understand what huge successes those small things are!
My husband also improved after about a year of IV; though he was inconsistent with being compliant with his treatment. He was on IV Tygacil. His fatigue improved and his cognitive abilities were improved. He was very cognitively impaired and still has deficits; but he improved so much on IV. He can now function a lot more as well.
Neither of us will ever hold down a full time job again, but it's fantastic to be able to do some online counseling for me, and to be able to build some websites for him.
I know not everyone responds to antibiotics. Everyone in my family did. Not a one of us changed our diets, or treated any of the other things a lot of people chase down. We have taken some supplements; but mainly just my younger son and I because my older son and husband just wouldn't comply.
Now I take Banderol and Samento. My Lyme doc feels strongly it is important to maintain remission. I also get IVIG every three weeks for the MG, but that is also known to help keep Lyme and company in its place since it boosts my immune system incredibly.
It's nice to be able to report some positive changes.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Tracy, it is so wonderful to hear about your family's success!
I am so happy to hear that you've all responded to abx.
So many bash long term IV abx but that is something that my kids have responded to as well. It takes months and months and months.
We did change the diet. We went GF. Turns out I'M the one who needs it most! I'm the one with the gluten/corn/soy/dairy/egg allergies!
I haven't been nearly as sick as my kids from the Lyme (held together with staples and scotch tape ) but I've had my share of other serious health problems, which are likely related to LD.
Glad to hear you are getting the IVIG. Wondering if your son with the CVID is as well?
Posts: 1885 | From here | Registered: Jul 2012
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posted
Congrats on your family's successes - I think this should go in Success Stories to give hope to others.
Note: I broke up a few of the paragraphs above for easier reading for many here.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My son outgrew the CVID; just like that! We were getting him set up for IVIG, and one day his IGG was just normal; it had doubled from where it had been for years. He recently had it checked it again and I don't have the results yet; but he definitely doesn't get sick constantly the way he used to.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Moving to General Support and adding to our Success Stories thread!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Wow Tracy! I had NO idea CVID could be outgrown! That's awesome! Gives me hope that DD won't need IVIG forever!
Posts: 1885 | From here | Registered: Jul 2012
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posted
I am so happy to read about your success story! It brought tears to my ears because all three of us in my family are sick, and it breaks my heart to watch my two boys struggle at such a young age.
Thank you for giving me hope!
Posts: 187 | From Connecticut | Registered: Jun 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Tracy might not see this unless it is emailed to her
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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) but I've had my share of other serious health problems, which are likely related to LD.
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