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!
Posted by Lymetoo (Member # 743) on :
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?
Posted by kidsgotlyme (Member # 23691) on :
I have never been tested because we spend all of our money on our daughter.
Posted by TF (Member # 14183) on :
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.
Posted by Lymetoo (Member # 743) on :
You can get the basic Western Blot for around $200... my ins reimbursed me 80%.**
I agree with TF on treatment.
**or try Lab Corp first.. it may come back positive
Posted by BoxerMom (Member # 25251) on :
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.
Be strong!
Posted by ktkdommer (Member # 29020) on :
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.
Posted by BoxerMom (Member # 25251) on :
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.
Posted by kidsgotlyme (Member # 23691) on :
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.
Posted by amk33 (Member # 13206) on :
Can you share your symptoms, please? I have a lot of weakness and pain in SI Joints, and have wondered about AS.
Posted by Ellen101 (Member # 35432) on :
amk33 sounds like we have the exact same symptoms. Wondering about this as well.
Posted by tickled1 (Member # 14257) on :
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.
Posted by tickled1 (Member # 14257) on :
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.
Posted by nonna05 (Member # 33557) on :
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????
Posted by hadlyme (Member # 6364) on :
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.
Posted by Lymetoo (Member # 743) on :
I believe the infections cause it. It's an inflammatory reaction. (auto-immune, if you will)
Posted by marypart (Member # 27012) on :
Kidsgotlyme,
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.
Posted by Carol in PA (Member # 5338) on :
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.
Posted by Lymetoo (Member # 743) on :
And Norman Cousins beat it with LAUGHTER. NO JOKE!
His book is titled Anatomy of an Illness.
Posted by kidsgotlyme (Member # 23691) on :
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.
Posted by Lymetoo (Member # 743) on :
Just hope you can get some help!!
Posted by Robin123 (Member # 9197) on :
[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?!
Posted by tickled1 (Member # 14257) on :
manybites, where did you get this information?
Posted by D Bergy (Member # 9984) on :
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
Posted by kidsgotlyme (Member # 23691) on :
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.
Posted by Lymetoo (Member # 743) on :
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?!
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