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» LymeNet Flash » Questions and Discussion » Medical Questions » Dish disease.

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Author Topic: Dish disease.
dragon08
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Has anyone been diagnosed with dish . I have had chronic lyme since 2009 . real problems with sacroiliac joints and spine since January of this year. is this possibly related?? this is really painful. any advice. surgeries medicine etc. recently went umass med center . awaiting answers .
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Keebler
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To be clear, you mean: Diffuse Idiopathic Skeletal Hyperostosis?

(and that) Hyperostosis is an excessive growth of bone. (as per Wiki)


Have you had an intracellular magnesium level test?

and your Vitamin D tests really matter, too.

Getting enough Vitamin K - this is essential for Vitamin D and magnesium absorption and the kind of magnesium matters, too.

Wonder if low magnesium could cause this excessive bone growth. Just a hunch. Many with lyme have magnesium deficiency and that can cause trouble with bone health, etc.

Have you had pituitary tests / imaging? Sometimes the pituitary can cause excessive bone growth - and lyme can cause pituitary issues as well. A LLMD best to first discuss.
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[ 10-31-2015, 03:04 AM: Message edited by: Keebler ]

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Keebler
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Are you currently seeing a LLMD?

As for surgeries, I would not do that unless you first consulted an ILADS educated LLMD. One key factor for surgery, other than that it can be very hard on anyone with chronic lyme and UMass is unlikely to acknowledge lyme at all . . .

steroids are often given during / after surgery and that can make lyme just zoom to the moon UNLESS for a required surgery an ILADS LLMD would be able to help advise for how to safety approach this matter.

On a smaller scale, before I knew I had lyme, I had several bone spurs removed from feet. They just grew back. Later found out I was magnesium deficient and also had lyme.

If they are just going to take off some bone growth, it could very likely just grow back until the real underlying CAUSES are addressed. And, if they are, then surgery may not be required.

Of course, if some spinal nerves are impinged, that would be more immediate need but, if not, other options certainly should exist.
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Keebler
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In addition to checking in with a LLMD . . . a consult with a Doctor of Osteopathy trained in this technique might be of great help. They can assess you but also help with alignment so that less pressure is a bother.


http://www.upledger.com/content.asp?id=26

UPLEDGER INSTITUTE (particular method)

CranioSacral Therapy

[this type is excellent for those with lyme as there is no sudden twisting of the spine or neck - which should never be done with some who deals with lyme]


http://www.upledger.com/findapractitioner.asp

FIND A THERAPIST trained in UPLEDGER TECHNIQUE

Some who are trained in this (such as a D.O. or P.T.) may be covered by your insurance.
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Keebler
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To help ease pain, first and foremost. But also many other helpful aspects to this.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set
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Keebler
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When magnesium came to mind, somehow I was thinking it might balance out possible excess calcium. So be sure to have your calcium levels checked, too.

If you've been taking calcium supplements, that's to be considered. Also check out possible connection between:

hyperparathyroidism, Hyperostosis (or DISH)
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Lymetoo
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quote:
Originally posted by Keebler:
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Have you had an intracellular magnesium level test?

and your Vitamin D tests really matter, too.

Getting enough Vitamin K - this is essential for Vitamin D and magnesium absorption and the kind of magnesium matters, too.

Wonder if low magnesium could cause this excessive bone growth. Just a hunch. Many with lyme have magnesium deficiency and that can cause trouble with bone health, etc.

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Very important points to consider.

RBC testing for magnesium:

http://requestatest.com/magnesium-rbc-testing

[ 11-01-2015, 01:55 PM: Message edited by: Lymetoo ]

--------------------
--Lymetutu--
Opinions, not medical advice!

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poppy
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I had excessive bone growth in hand joints as a result of untreated lyme. When treatment started, this growth stopped, but of course did not take away what had already happened.

My layperson take on this is rheumatoid arthritis was and still is confused with lyme disease when the latter produces arthritis with similar results. Those kids in Lyme, CT in the early days were told they had juvenile rheumatoid arthritis when they really had lyme. The treatments are totally different.

Frequently people with lyme who go to some uneducated major medical establishment get given some diagnosis of a rare polysyllabic unpronounceable disease. Amazing how many of these can be generated from the symptoms of one infectious disease and treated the wrong way.

I could be wrong about your situation but that was the first thing that came to my mind because of previous cases, many of them.

Hope you get this figured out. Are you being treated for lyme/ coinfections?

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dragon08
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thank you was treated By DOCTOR H FROM EAST LONGMEADOW.THIS DISH IS THE FIRST IN MY FAMILY. BUT ALL MY SISTERS . HAVE BEEN DIAGNOSED WITH SPONGILIDAS ( SP.) AND ARE DISABLED. FROM JOBS . I HOW EVER HAVE BEEN TESTED FOR GENE AND DO NOT HAVE IT . PERPLEXED AND IN PAIN . IN WESTERN MASS. THANK FOR YOUR HELP. AND YOU ARE RIGHT THE MD SPERCIALIST FROM UMASS DOES NOT BELIEVE IN CHRONIC LYME AND ALL LYME DISEASE WILL BE CURED WITH ROUND OF ANTBIOTICS AND I SM QUOTEING.!!!
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poppy
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Was treated? Not treated now? While you do have a puzzling family history that can't be ignored, chronic lyme could also be the cause of joint and spine problems.
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Keebler
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Was your doctor ILADS educated and "lyme literate"?

Were other tick-borne & chronic stealth infections assessed?

http://www.betterhealthguy.com/lyme/testing

Testing - Tick-Borne Infections

Updated: July 05 2015


Did your treatment resemble this:?

http://www.lymenet.org/BurrGuide200810.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

Page 27 - SUPPORTIVE THERAPY & CERTAIN ABSOLUTE RULES for self-care


http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-two-standards-of-care-revisited.html

Two Standards of Care Revisited: Should Lyme Patients Have A Choice?

By Lorraine Johnson, JD, MBA - 7th January 2015


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.

Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
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Keebler
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Did your treatment also include . . . and are you now also being protective of liver? /This can really help reduce some inflammation / pain.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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Keebler
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Please watch this video . . . it could offer you many answers. Now, as you watch it, and if you start to get overwhelmed . . . just take a breath and get a cup of green tea . . . stay with it. It make take a few sessions, just keep a word page open for notes and mark where to start back up again after resting.

Just stay with it. It's so important to see this video. Then, after the video, you might find a doctor who can help you take this one step at a time.

It is possible to sort this out.


https://www.youtube.com/watch?v=uj0H3T9HMeQ

"Why Can't We Get Better?"

VIDEO

One Hour & seventeen minutes - video presentation
Recorded at Western Connecticut State University on May 12, 2015.

Sixteen point model to consider with any treatment plan for lyme / tick borne infection / chronic stealth infections . . . .

" . . . Really, there are solutions for a vast majority of patients . . . ."

Inflammation a major point

Book:

http://www.amazon.com/s/ref=nb_sb_noss_2/184-1715542-5541137?url=search-alias%3Daps&field-keywords=lyme%2C%20Horowitz

Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease

- by a leading ILADS LLMD - November 2013


http://www.cangetbetter.com/

Author's website


TF posted this video but I did not capture the thread where she posted it. She did also say this:

Go directly to minute 51 and hear Dr. H. say that when you get lyme, your immune system can start attacking your myelin sheath because, in some people, the myelin sheath looks like the tail (flagella) of the lyme spirochete. So, the person suffers with demyelenation of the sheath.

So, this is how a person with lyme can have the movement problems and other symptoms of CIDP and the real cause is lyme disease.

Treat the lyme disease and the body stops attacking the myelin sheath and the so-called CIDP goes away. (end TF's post)

And I'll add here that demyelination can cause a lot of pain.
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[ 11-01-2015, 05:49 PM: Message edited by: Keebler ]

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