kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
My orthopedic doctor told me today that he is almost certain that this is what I have. I can't believe it. He wants me to get in with a rheumotalogist. Even if I for sure have it, I don't want to take the immunosuppresive drugs. They scare me.
I have an appt. with a LLMD in July, and I have my kit to get my test done through Advanced Labs for the new culture test. I just haven't had the money to do it.
I have made the decision to go to a naturopath that comes highly recommended to see if he can help me.
I feel so hopeless. My daughter is struggling with many issues related to lyme and I just don't know if I can handle anything else!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
My cousin has been dxd with AS .. she also had Lyme and was treated. She is not on any immunosuppressant drugs.
So are you saying you don't know if you have Lyme or not?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I have never been tested because we spend all of our money on our daughter.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Check out The Road Back Foundation. They advocate low dose antibiotics to treat AS as well as the other rheumatic illnesses.
It could tie right into lyme treatment very nicely.
This treatment is based on an infectious cause of rheumatic illness.
You don't have to take immune suppressants. Get to a doc who believes in antibiotic therapy instead. You can GET RID of this with antibiotics. You can't get rid of it with conventional treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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This site is dedicated to research, education and support.
Be sure to read the Molecular Mimicry section. It makes a case for Klebsiella bacteria as the underlying cause of AS.
When I mentioned this to my LLND, she said the Klebsiella-AS connection was widely accepted in medicine, but patients don't always respond to antibiotics. Gee, I wonder why not? Are they treated with more than a 10 day course of a single antibiotic? I doubt it.
AS can also be controlled through diet. All the info is on the site.
Please don't stress. Doctors often grasp at straws with our population. You may not even have AS. If you do, it's likely just another microbe in your mix.
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My son is HLA B27 positive and had terrible spine pain but no confirmed diagnosis, just ER. All of it cleared up with Lyme treatment.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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BoxerMom
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Member # 25251
posted
I just saw that you were diagnosed by an Ortho.
If he is basing the dx on your pain pattern, please know that Babesia causes symptoms similar to AS - especially the hip, SI, mid-back and neck pain.
AS was suggested to me during my own Medical Mystery Tour. It was really Babesia.
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Thank you everybody!! I am going to the doctor today, and I am going to ask her if she will do the Klebisiella test(if their is one.)
I feel very sure that this can be dealt with and cured if I can find the right doctor.
I have the order to do a bunch of bloodwork to confirm if I have it. I also have an appt. with a naturopath who uses some type of machine to diagnose what is going on in my body.
Interesting about the babesia, Boxermom. I will have to just keep searching for answers as I am financially able.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Can you share your symptoms, please? I have a lot of weakness and pain in SI Joints, and have wondered about AS.
Posts: 418 | From NJ | Registered: Sep 2007
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Ellen101
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Member # 35432
posted
amk33 sounds like we have the exact same symptoms. Wondering about this as well.
Posts: 1748 | From United States | Registered: Dec 2011
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I've strongly believed for a long time that I have AS. And, a few years ago I came up positive on a stool test for Klebsiella so I'm a firm believer that is the cause.
I agree that treating the Klebsiella and modifying diet are the way to go.
BTW, the stool test I did was something an integrative doc ordered so don't know if your doc will order it. I think it was Genova but can't remember exactly.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I've strongly believed for a long time that I have AS. And, a few years ago I came up positive on a stool test for Klebsiella so I'm a firm believer that is the cause.
I agree that treating the Klebsiella and modifying diet are the way to go.
BTW, the stool test I did was something an integrative doc ordered so don't know if your doc will order it. I think it was Genova but can't remember exactly.
Posts: 2541 | From Northeast | Registered: Jan 2008
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
What is it ,or does it do......this is a new one to me , not that I need to add to the list... Could it have had anything to do with what happened to Sammy????
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Questions... really.. Can one have this AS and have say FL1953 too. OR does our infections cause AS??
I just read the symptoms of AS and it fits me to a T ..... I'm in shock.
I have wondered what this pain in my hips, then neck, then lower back have been from. It's always at night and morning. During the day I'm fine.
I see my llmd in July and hm... will ask him for sure. And.. he's the one that believes in low fat diet, so I'll look up the link for the diet for this AS.
Very interesting. Even down to the eye issues. I have that on and off for years, one eye. And always am anemic.
Of course all of these symptoms can be from these vector borne diseases... but hmmm...
Thanks for posting this.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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My son had lower back pain, costochodritis and enthesitis, all big markers for AS. He is also hLA b27 positive. We have a huge family history of arthritis, b27, and Crohn's.
My son has done extremely well on antibiotic protocols and lyme treatment from an LLMD who is a rheumatologist.
I don't know where you live, but she is excellent and recommended both here and on Roadback.org.
PM me if you want her name.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You may be able to reduce the inflammation and pain of this condition with systemic enzyme therapy.
Quote: Reports have been made concerning the positive influence of oral enzymes on ankylosing spondylitis. In 1980, Dr. H. Reinbold reported of his astonishing 35-year-old patient with the condition whose complete remission had persisted for at least 12 years.
You can google for ankylosing spondylitis + systemic enzymes.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
And Norman Cousins beat it with LAUGHTER. NO JOKE!
His book is titled Anatomy of an Illness.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
You guys are a wealth of knowledge!!
My symptoms are: extreme hip pain for I don't know how long. It just kept getting worse and worse since the beginning of the year.
My mid-back feels like a knife is being stuck through it. My ribs hurt a lot too. The chiro keeps telling me I have ribs out of alignment.
I started physical therapy for my hip in April. The pain kept getting worse instead of better. I also have pretty bad knee pain.
I went to the ortho and he ordered an MRI of the hip. I mentioned that my back was hurting and he said he would check it at my next visit.
I went in on Tuesday. They x-rayed my back and I have bone spurs all over my T-spine. That, combined with my hip issues,(the mri didn't show anything) has led him to think it's AS.
Also, I went for my physcial today. They had drawn bloodwork several weeks ago. A couple of the tests that the ortho wants me to have done before my rheumatologist appt had already been done. The CRP came back elevated which is a marker for muscle enzymes being affected.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
[QUOTE]Originally posted by Lymetoo: [QB] And Norman Cousins beat it with LAUGHTER. NO JOKE!
His book is titled Anatomy of an Illness.
................................................
True, and high Vit C also. They had to move him out of the hospital room because his laughing was disturbing other patients. I think he was watching Marx Bros movies. How 'bout that for an RX?!
Posts: 13116 | From San Francisco | Registered: May 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
manybites, where did you get this information?
Posts: 2541 | From Northeast | Registered: Jan 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Low Dose Naltrexone is used to treat this, and also is used to help with Lyme Disease.
The alternative method that has been used is specific frequencies that break up the calcification in the spine over time. Frequency treatments can also be used for Lyme Disease.
Good Luck
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
THANK YOU!!!
I have the name of a LLMD that I am going to make an appt. for. In the meantime, I have an appt. with someone close to home that knows about lyme and all that goes with it. I see him in July.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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quote:Originally posted by Robin123: And Norman Cousins beat it with LAUGHTER. NO JOKE!
His book is titled Anatomy of an Illness.
................................................
True, and high Vit C also. They had to move him out of the hospital room because his laughing was disturbing other patients. I think he was watching Marx Bros movies. How 'bout that for an RX?!
-Wasn't there a movie too?
kidsgotlyme... GOOD JOB!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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