Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

 

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 Dental problems
Author: Ken (---.proxy.aol.com)
Date:   04-09-02 20:19

After sometime since seeing my dentist, a bridge fell off. An initial exam last week and review today suggests that either sarc or the meds have substantially affected my mouth's glands. My PCP and dentist have concluded the function of the salvatory glands have been disrupted for some time leading to increased exposure to dental decay. As if I really need more meds, I now have Rx's for toothpaste and mouthwash. Oh boy.

 
 Re: See your dentist on schedule
Author: Admin (207.175.253.---)
Date:   04-09-02 20:35

Ken, the most common cause of receding gums in sarc patients is too high a level of the hormone 1,25-D
This causes the teeth to be resorbed into the blood, and the calcium is then deposited elsewhere (particularly in the lungs and kidneys). The bones also get resorbed. Get your D-Ratios tested and make sure that the 1,25-D is close to normal (20-30 pg/ml).

Did your doctor say why the salivary ducts were not working? Did he notice any swelling?

Ask your dentist to use a local anaesthetic which does not have epinephrine added to it. Epinephrine can disrupt the inflammatory response and upset the norepinephrine neurotransmitter homeostasis.

A top quality ultrasonic toothbrush works really well, and a mouthwash with Cetylpyridinium Chloride disinfectant is much better than toothpaste. This disinfectant is better than more alcohol, without the intoxicating effects... I suggest you select a mouthwash with a coloring other than Yellow #5. You can get a prescription mouthwash with Cetylpyridinium Chloride. Also, Albertsons/Sav-on/Osco have a "peppermint mouthwash and gargle" that has only 14% alcohol, Cetylpryridinium Chloride, and is colored with Blue#1 (which is fairly innocuous).

Ken, I came across a paper the other day saying that the gums of a sarc patient were more likely to become damaged, I will chase it up and post it. Update: See Belinda's post below...

Also, gingivitis is a bacteria and presumably may therefore cause granulatomous inflammation.

Most sarc patients have dental problems of one sort or another. Keep them to a minimum by avoiding those Epinephrine injections...

..Trevor..

 
 Re: See your dentist on schedule
Author: elaine emmi (---.client.attbi.com)
Date:   04-10-02 20:26

Hi Ken and Trevor,

Could it be Sjogren's? It affects tear ducts, salivary glands, etc. My pulumonary doc suppects I have that problem - and that's what's making my sinus problems worse. Will take a test for that soon.

Sometimes my tongue burns, don't know if that is related. And I'm always thirsty. Tho living in Utah has something to do with that!

Cheers to all,
Elaine

 
 Re: See your dentist on schedule
Author: Admin (207.175.253.---)
Date:   04-10-02 20:37

Elaine,
No, it's not Sjogren's. This is because "for Sjogren's, the following must be excluded:
past head and neck radiation therapy
hepatitis C infection
acquired immunodeficiency disease (AIDS)
pre-existing lymphoma
sarcoidosis
graft vs. host disease
use of anti-cholinergic drugs (since a time shorter than four-fold half-life of the drug)"

Anyway, Sjogrens is a SYNDROME. Like Fibromyalgia. It describes a group of symptoms, and its diagnosis gives us little clue as to the underlying cause(s).

I saw some really good slides at the recent Sarc conference. They showed granulatomous inflammation in the tear ducts and around the eye tissues. I will try to get copies of them, because they give you a pretty good idea what to expect from the inflammation this disease creates in soft tissue

..Trevor..

 
 Re: See your dentist on schedule
Author: Debbie (---.rasserver.net)
Date:   04-28-02 18:09

This was very interesting to me. I've been diagnosed with sarcoidosis several months ago, however, a year ago I had horrible pain in my teeth and gums. We never could figure out what was going on. I even went to a myofacial pain specialist. Is there a tie in with this kind of pain and saroidosis?

 
 Re: See your dentist on schedule
Author: Admin (207.175.253.---)
Date:   04-28-02 18:23

"Is there a tie in with this kind of pain and saroidosis"

It depends on which Dentist you talk with! Mine has always said that there is a tie-in, but then he also knew about the other sarc anolomalies (like no-epinephrine in injections and sensitive gums).

Gingivitis is a bacterial infection. Even my dentist was puzzled by the "abscess" that has come on gone around a frontal crown for 15 years! Abscesses don't recede (he said). But maybe if it were sarcoid granulatomous inflammation from a bacterial infection it would ebb and flow... Isn't it strange how I haven't had swelling for the last few months, ever since I had a course of Erythomycin...

..Trevor..

 
 Re: See your dentist on schedule
Author: Gosge (---.adsl.xs4all.nl)
Date:   04-29-02 03:57

Hello all,

For a year now I have all kinds of symptoms, probably due to sarcoidosis.
Last year I visited my dentist 9 times in 10 weeks, having extreme toothaches, but nothing seemed to be wrong with my teeth. The severe headache next to my eye (temple) was extreme as well. These symptoms were followed by anaemia, fatigue, shortness of breath, high pressure feeling in my head, loss of memory, tingling in my tongue, loss of muscle strength, fatigue and recently frequently the sensation of not having a steady picture of my environment(not dizziness though).
All these things come and go, some don't return and others do.
A recurring one is the sensation (mainly on the left side) that my teeth are moving up and down in my jaw, when riding my bicycle on even slightly Another recurring one is that the left side of my tongue feels sort of numb, my face feels like it is very tired. Even while exercising I want to just close my eyes, because it feels like my whole face wants to relax not because I feel tired or sleepy. And the most
My neurologist tells me that because I don't have complete nerveimpairment, it is impossible to diagnose possible neurosarcoidosis.
My head feels like a pack of cottonwool/misty and thinking is a problem.
Does anyone have these experiences? So far I have only read about the unfortunate people who suffer from far more severe impairments and aches.

I have had thorax x-rays and several bloodtests, including ACE and all came back OK. Also a bloodtest was done for Lyme and it also came back negative.
13 years ago I was told that I had fully recovered of sarcoidosis and that it wouldn't return. Now I am told that it's for life. Which to choose? The diagnosis this time is based on exclusion of Lyme and my history of having had sarcoidosis 13 years ago.

I am wondering what other methods there are to diagnose sarcoidosis or neurosarcoidosis when x-rays and ACE-levels show no signs of sarcoidosis.
Is it possible to have neurosarcoidosis without total nervefailure?

Hope to hear more!

 
 See your dentists on schedule
Author: Julia Elam (---.gen.twtelecom.net)
Date:   04-29-02 07:33

Hi! I was diagnosed with Sarcoidosis in September of 2001. I am sure I had it for quite some time before the diagnosis.

In April, or so, of 1999, I started having REAL, REAL bad itching on the upper left side and on the lower right side of my gums. It was strange that is was localized in those two areas. There was also a yellowish color and deep red stripes on the gums in those areas.

I went to a periodontist, a dentist, and an oral surgeon who did a biopsy on the gum. I also went to the University of Chapel Hill Dental Facility. When the biopsy came back, it said that there was a granulomatus inflammation on my gums. The oral surgeon said it could be sarcoidosis or turberculosis. I was asked to have an ace level test and a TB test. Both came back negative.

Since there was no diagnosis, I was simply told to switch toothpaste from Ultrabrite to plain 'ol Arm and Hammer Baking soda. Strangely enough, this seemed to help the itching. So, I figured it was just the toothpaste I was using.

When I was diagnosed with Sarcoidosis last year, after having a cough that lasted forever and difficulty breathing, I put two and two together and figured the Itching in my gums was actually due to the Sarc.

So, if anyone is having these afore mentioned symptoms, it could be sarcoidosis. I am happy to answer any questions anyone might have. Thanks! Julia

 
 Re: See your dentist on schedule
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   04-29-02 08:54

After my diagnosis, I changed to a new dentist who is very interested in sarcoidosis and any dental problems it may cause. I didn't have any problems with my last visit. In the past, I've had problems after routine cleaning and polishing treatments. I've had terrible flu - achy all over - symptoms which began within 12 hours of my office visit, and irritation in my mouth.

Now I found this article: "Polishing-paste-induced silica granuloma of the gingiva" which says polishing paste itself can be a problem. I plan to take this article to my dentist.

Does anyone else have problems with dental cleaning and polishing?

Belinda

 
 Re: See your dentist on schedule
Author: Admin (207.175.253.---)
Date:   04-29-02 09:07

Yup, I refuse to have cleanings. I always thought that the red inflamed gums were from the flossing, but this article on the silica granuloma is surely food for thought.

..Trevor..
ps: I used to mix Baking Soda and Hydrogen peroxide paste - it was very effective, but the Cetylpyridinium Chloride mouthwash I use now is more convenient and just as good.

 
 Re: See your dentist on schedule
Author: Admin (207.175.253.---)
Date:   04-29-02 21:51

Gosge,
The pre-disposition to react violently to immune challenge and form sarcoid granuloma is genetic. You might acquire it by mutation during life, but once you have it you will have it for life.

Clearly you should discuss with your dentist or doctor a course (1-2 weeks) of a good gram negative antibiotic (like erythomycin or a tetracycline) to deal with any gingival infections in your mouth.

Intense itching, intense pins and needles and other Paresthetic Pain is commonly reported by sarc patients. Pain is not passed back to the brain correctly, or is not interpreted correctly, it depends on the particular patient and particular symptoms. The feeling of teeth moving within your mouth, which they are clearly not doing, is a classic type of paresthetic pain. Mine was biochemical in nature, and was fully reversible. There is so little known about the brain. So much more for us to learn. I will send you a copy of a manuscript I wrote which deals with this issue, I you can discuss it with your doctor(s).

Most sarc patients are unduly concerned with 'diagnosing' neurosarc. Since there is no real understanding of what causes it, and no effective treatment for it, bringing pressure on doctors for extra tests (many of which are dangerous) to come up with a diagnosis is probably wasted energy.

I hope some other patients will post with information about how they beat their paresthetic pain. The manuscript describes how mine disappeared. I wish I could fully explain what causes it but the evidence is not out there yet. I am in the process of preparing another manuscript, keep an eye out on the Forum for when it is ready. meanwhile - keep smiling
..Trevor..

 
 Re: See your dentist on schedule
Author: pages2 (---.kc.rr.com)
Date:   04-30-02 13:26

One of the first people that I knew who had Sarcoidosis was the Hygienist.

The hygienist developed a bulge in her back and when this was biopsied it was Sarcoidosis. She was open to share with me.

SS

 
 Re: See your dentist on schedule
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-14-02 12:25

Here is a website for the Naval Dental School for Oral Medicine. Scroll down to "Disease of the Month" and there is a link to click to an article on sarcoidosis. The article explains some of the problems, including dental problems, encountered with sarcoidosis.

Belinda

 
 Lip Swelling and Mouth Lesions
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-31-02 11:06

Trevor and Ken,

I found this article on lip biting which said peeling, cracked lips can be due to sarcoidosis! I had cracked, peeling lips and feeling of numbness and swelling in my lips, off and on, a long time before other sarcoid manifestations.

I found these articles on PubMed:

Granulomatous cheilitis (lip swelling) can precede sarcoidosis diagnosis

Oral swelling and lesions may be one of the first manifestations of sarcoidosis

Wouldn't it be a lot easier if they could biopsy the lip to diagnose sarcoidosis?

Take good care of yourself,
Belinda

 
 Re: See your dentist on schedule
Author: Kipy (---.public.svc.webtv.net)
Date:   06-01-02 18:25

Hey Ken,
I just had the exact thing happen to me. My Cousin is my Dentist....I have a bridge also....it hasn't dropped out...but, due to the problems with my Salivary glands (They don't work on their own anymore...I have to milk them and eat sour candy or drink a teaspoon of lemmon juice..Yuk) Anyway, now the gums are receeding from the teeth.....So, I have the RX tooth paste and mouth wash too....he told me to floss often and try to keep in between the teeth clean....as this makes me more suseptable to tooth decay....Boy, just one more thing to have to deal with, eh?
Take care all,
Kip
PS. Trevor, I just wanted to say that I like your message board....GREAT Job!!!

 
 Re: See your dentist on schedule
Author: janette (---.tmns.net.au)
Date:   07-05-02 17:03

My sarc is affecting salivary glands and my dentist is concerned about my teeth aswell .Mine constantly feel dirty and aching it doesn't matter how many times I clean them at one stage I would clean them a dozen times a day. And my tongue has a burning sensation and mouth is very dry constantly drinking .My tongue has constantly been sore and dry since having lumps removed 2 years ago so blamed sarc.Then last month my surgeon blamed my hormones I am 42yrs old so I presume its easier for them to blame it onto something else as everyone else I speak to that doesn't have sarc but is about the same age not one have said they have a sore tongue .I like Kipy have to eat sour lollies or I drink or eat grapefruit
Thankyou Janette

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-05-02 17:12

Janette,
I have moved your earlier question into this topic, as it really fits with the one you just asked. You asked :
"I have had 7 granulomas removed of my salivary glands last one was in the bottom of my lip. Do I have salivary glands there or is the sarc spreading .My last ACE test was under 60 so I was told not to come back to the Dr. That was done 6 months before this lump"

A sarcoid granuloma is less than 0.1mm (about 4 thousands of an inch) in diameter. It is not possible to operate on something so small. I suspect you had nodules of many hundreds or thousands of granuloma removed (sorry to be picky, but I think it's important to know these things)

Sarcoidosis is systemic inflammation. There is no particular reason that the salivary glands were solely involved. Has inflammation been detected elsewhere? Until the cause of the inflammation is removed it is reasonable to expect inflammation elsewhere.

"the bottom of my lip" is not specific as to inside or outside, near a tooth root, and a host of other variables that your dentist or physician might want to examine. But there is nothing specifically to worry about. Dental inflammation is very common amongst sarcoid patients.

Read the topics on how bacteria can cause sarcoid inflammation, and ask your dentist about the bacteria that are in your mouth. There are suggestions on anti-bacterial mouthwashes here, and your dentist can also write you a prescription for one to be custom made. These will be much more effective than acidic candies

An ACE test result of 60 is indeterminate without knowing what ACE Genotype you are. There are details about this in another thread. 60 could in fact be quite active (if you are of II genotype) or about normal if you are of DD genotype. Has it been higher than 60?

..Trevor..

 
 Re: See your dentist on schedule
Author: janette (---.tmns.net.au)
Date:   07-06-02 06:21

My first lump was about 2 inches round on the floor of the mouth they removed that aswell as the small salivary glands. the next lumps after that are small and the first ACE blood test that I had done was 125. They seem to want to take me to surgery to remove them straight away.
All my lumps are inside my mouth.Yes I did read about the Ace tests and I don't know what category I fall in I have had to push to find out its affecting my salivary glands they don't tell me anything else.
Thankyou Janette

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-06-02 06:35

Janette,
2 inches diameter on the floor of the mouth is pretty large to be described as a 'lump'. It sounds more like a profuse swelling, in which case I don't understand how they could have "removed" it.

An ACE of 125 is very high, and indicates extensive systemic macrophage (inflammation) activity. Systemic means 'throughout your whole body', not just in your mouth. So now I am guessing that you have been given quite a lot of prednisone to bring down the ACE and reduce the swelling. This information is critically important, as once you use Prednisone for much more than 6 months it becomes pointless to try and figure out how to fix whatever symptoms you are experiencing. As you can read elsewhere on this board, long-term use of prednisone eventually damages everything in the body: your bones, your muscles, your gums and dissolves your teeth. It hides the main problem and substitutes others.

Sarcoidosis is a simple disease, but one which the medical profession does not yet understand. Mike tells us "doctors .. in Sweden .. call it a "good" sickness, not fatal"

Unfortunately the attitude elsewhere in the world is to cut and drug the disorder into submission. That approach doesn't work It has been used for 50 years and it doesn't work

It sounds as though you are going to have to study hard to help your doctors figure out what is best for you. There is a revolution going on in our understanding of this syndrome and of the side effects of its treatment, but it will take a decade or more for the information you can already find at SarcInfo to filter down to individual family Doctors (IMO).

Anyway, get a mouthwash with Cetylpyridinium Chloride (and no FD&C Yellow #5 or Tartrazine, E!02) in it, and your mouth should start feeling better.

..Keep Smiling..
..Trevor..

 
 Re: See your dentist on schedule
Author: KaitlynK (---.proxy.aol.com)
Date:   07-28-02 07:04

Dear Trevor:

You made this statement on 7/6/2002 to Janette: (paraphrasing)

"long term use of prednisone causes lots of problems..................it dissolves your teeth."

Could you elaborate on that for me? My teeth, admittedly in structurally bad shape from a lot of reconstructive work, have been dropping like flies since I've been on prednisone--3 teeth in less than a year and a half. Do you have any links to articles that support that statement so I could show them to my dentist who has been insulting in his derision--he apparently thinks I'm some kind of slob who doesn't care for her teeth (wrong)? I'd appreciate any help on this.
KaitlynK

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-02 07:50

Kaitlyn.
"Nobody expects the Spanish Inquisition" ... Monty Python...

I had some trouble finding the reference that was in my mind at the time I wrote those words... But here is what I found instead:

Studies on periodontal conditions in asthmatic children

Risk for periodontal disease in patients with longstanding rheumatoid arthritis

Also note the link between sarc and periodontal (dental) disease:

Systemic sarcoidosis presenting with Horner's syndrome and mandibular paresthesia. Paresthesia is defined in the online medical dictionary.

Kaitlyn, if you are having trouble with your teeth while taking an immunosuppressive drug like Prednisone, I would strongly recommend that you look into starting a course of antibiotic therapy, just in case the gingivitis, or some other infection, is the root of the problem (root, get it?.. joke...). There is a good reference for your doc on how to do this with Minocycline at URL http://www.rheumatic.org/protocol.htm

Additionally (my turn for an question) you sent me two sets of data for 25-hydroxyvitamin D and 1,25-dihydroxyvitamin D that had been taken by your endo. I would expect that these values had normalized since starting the prednisone. Can you let me have any recent Vit D data?

Hope this helps...
..Trevor..

 
 positive effects
Author: Craig Moore (---.vc.shawcable.net)
Date:   07-28-02 11:28

Hi Trevor (and all)

I continue to read and learn from all of you and I appreciate your efforts. I am curious, Trevor, how many positive stories you've had about the use of medications, specifically prednisone.

I read one persons comments about how it helped him get back to his athletic endeavours and he was thankful for that. As I told you before, I'm an ultra-distance runner and would give anything to get my lung capacity back to "normal". By the way, my previous three PFT's showed that I was normal but over the last year I know that I have gotten worse. I can still run forever but I am certainly slower, especially on the up-hills.

So, I'm just curious about the good results from prednisone or other meds, without losing sight of the negative side effects of course.

thanks and best wishes,
Craig

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-02 11:46

Craig,
I have never seen any objective data that show that prednisone can improve a patients Pulmonary Functions (PFTs). It makes patients' feel better, improves short-term Xrays and lowers short term ACE. The experts who write the papers linked at the bottom of this page conclude that it cannot improve anything, longterm.

My advice is to get some serious antibiotic treatment and see if that can stop the slow slide of your PFTs. It's always best to get at the underlying cause, and I suspect that even though you are not exposed to asbestos or beryllium every day you remain exposed to bacteria living in your soft tissue. Show your doc this reference to give him/her some idea of how Minocycline can be made to do the trick:
http://www.rheumatic.org/protocol.htm

..Trevor..

 
 Re: See your dentist on schedule
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-28-02 13:57

Kaitlyn,

It might be a good idea to show your dentist some of the articles about how the inflammation of sarcoidosis affects the gums and teeth. There are previous posts which have links to sarcoidosis affecting the gums. Here is a photo of sarcoidosis of the gingiva

Here are links to articles about sarcoidosis affecting the teeth and jaw:
Loose teeth
Oral ulceration

I hope your dentist understands that sarcoidosis itself can affect the teeth, mouth and gums.

Belinda

 
 Re: See your dentist on schedule
Author: KaitlynK (---.proxy.aol.com)
Date:   07-29-02 03:53

Trevor:

Thanks for your answer about "dissolving teeth." You asked me for some new lab values. Here's what happened. I was on 10 mgs. pred every day last year in an attempt to bring down urinary calcium (which would have surely been followed by elevated serum calcium) It was normalized to a spot where my endo could live with it (200?) if I drank a lot of water. He put me on 10 mgs. pred every OTHER day starting last February 3. I was unable to contact my doctor and didn't have an appointment until July (for reasons of my own stupidity, his office staff screw ups-you name it). In that period of time I decided I wasn't going to have sarcoidosis anymore. I reduced my prednisone in increments until I was finally down to 2.5 mgs every other day. I had some labs done before my July appointment but no vitamin D levels. Here's the values:

urinalysis: calcium: 49.2 mg/dl
calcium (50-150): 768
ACE: 105

I'm back on 10 mgs. pred daily and feeling much better (I had been denying and ignoring my symptoms of high calcium while on the 2.5 every other day.) I will be doing another 24 hour urinary test and, I believe, vitamin D tests the end of August and will let you know what those values are. Thanks for everything!!
KaitlynK

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-29-02 04:07

Kaitlyn,
Thanks for the update.

Trevor

 
 Re: See your dentist on schedule
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   11-15-02 22:25

Trevor,

I just found this information on the website of the Forsythe Institute. It tells about the research headed up by Dr. Martin Taubman, investigating specific immune responses and their effects on dental caries and periodontal disease.

Their information says. "Lymphokine profiles of T cells in diseased human gingival tissues indicated a predominance of Th1 type (IFN-g positive, IL-5 negative). These studies support our hypothesis that Th1 lymphocytes are destructive in periodontal disease, as contrasted with the protective effects shown by Th2 cells.. "

Activated T cells, particularly Th1 type, express a protein which influences osteoclast differentiation... Our working model is that T lymphocytes entering gingivae are selectively regulated by cytokines and chemokines to differentiate to Th1 lymphocytes that can then produce destructive cytokines which are responsible for periodontal disease symptoms including bone resorption."

My question is: Since sarcoidosis is a Th1 immune response, couldn't this partially explain many of the dental problems sarcoid patients encounter?

I think I may have mentioned that I endured fractures in 12 apparently healthy teeth prior to my diagnosis. At the same time I was treated for chronic sinusitis and nasal polyps.

Belinda

 
 Re: See your dentist on schedule
Author: Bastiana (---.olympus.planet.nl)
Date:   11-16-02 02:31

Hello,

Although the subject here extends the dental problem, I am very glad that you describe your complaints. I never had toothaches, but a decline of the quality of my teeth, has been a subject for my dentist since two years. Now I am so happy to be able to forward him this information. Because it seemed as if I didn't clean my teeth thoroughly, and I felt 'dirty'.

The things you describe, which tend to be a more neural inbalance, do match with my complaints. I increasingly had this 'cotton/misty' head, and a lack of concentration. Also I had this balance disposition, which might match with your environmental incertainty. I could open a upper kitchendoor and fell 'backward' for no reason. And always when I am tired, and I go through a dooropening, I tend to bump against the right side of the opening. The cottonlike feeling has now vanished but inside my head, it is really 'strange'. Trevor described very accurate the 'strangling' within the throat, difficulty swallowing. I think the head feeling is like a extension of this into the 'brains'. Sometimes I feel this inflammation in my spine, and legs. Like something smoothly 'bubbling'. Once the diagnosed a Bechterewsche desease, which actually never developed like one. I think it was neurosarcoidosis. I also have since the diagnose was made 25 years ago, a 50% hearing failure on the right side. Only once a 'clairfeeling-voyant' told me what I inwardly feel. He said that my right brainpart is 'smaller' the the left one, and that the connection between both are not working well. Although he scared me what he said, I do have a 'clinchy' feeling on the right inner side. Like a 'cramp'. Never could anybody understand this complaints. I never had total nervefailure, although difficulty walking. I, as you also wonder whether these complaints were the first with those on this website who suffer more severe impairments and aches now. And as I read Trevors comment, there is no scientifical testing on neurosarcoidosis. I had all these complaints over the years that followed when I was healed. As with you, nobody told me it sarc was reversible.
If I regard my inner despair which was provoked by these 'failures' and the complete ignorance and helplessnes of the doctors... The whole of my right side, is not 'normal'. But how the hell do I communicate this? They tend to frame it with hysteria or neurothenia, but I absolutely are not such a type of person. I might/could be, but I am not.... Doctors also qualified my situation as a 'burn-out'... But I am not a burn-out type....They qualified me with extreme 'tensions'... yes, of cource if you have all these strange things and cannot give them a place!

Well, as you I am curious what the complaints with this neurosarc are. Is it caused by granulatons on the tissue of the nerve, or is it because of the high vitamin D?
And, has anybody had experience with the developpement of sarc by meningites?

Well a lot of questions, not directly connecting to tooth. Maybe Trevor is willing to make a new topic on neurosarc? Especially for those who enter the site as newcomers.

Greetings Bastiana

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-16-02 02:59

Bastiana,
Here is a summary:

1. Sarcoidosis is a systemic inflammatory disease. It affects every part of the body, including the brain and the teeth, depending only on where the bacteria spread

2. The hormone 1,25-dihydroxyvitamin-D (1,25-D) helps spread the inflammation throughout the body

3. High levels of the hormone 1,25-D cause the brain and its neurotransmitters to fail to work properly. This causes Neurosarcoidosis. You do not need to have inflammation in the brain to suffer from Neurosarcoidosis. The hormone spreads everywhere the blood flows.

4. Most Sarc patients suffer from Sarc Neuro symptoms. Not necessarily full facial palsy, but a sampling of lesser problems. Even Facial Palsy is caused by excessive levels of 1,25-D

5.Get your D-Metabolites tested. In the USA this can be done at any doctor's office. If your 1,25-D is above 30 pg/ml and you have sarcoidosis, you will be subject to neuro symptoms

6. Most SarcInfo readers who have had their measurements taken (over 90%) have had 1,25-D values above the 42-45 pg/ml at which serious problems occur, even in the normal population.

7. Most of the same 90% of SarcInfo users have never had hyperglycemia or hypercalciuria. Just high 1,25-D levels and lots of suffering.

8. The enamel on teeth is resorbed (dissolved) into the bloodstream by high levels of 1,25-D, causing the teeth to recede above the gumline.


I hope this help you understand that the single biggest step you can take is measuring your D metabolites, and lowering your exposure to Vit D and sunlight until the 1,25-D drops into the 20-25 pg/ml range.

Oh - there is also a localized Renin-Angiotensin system in the eyes. YOU MUST PROTECT YOUR EYES to get rid of the neuro symptoms. PICK UP THE PHONE AND ORDER THOSE GLASSES FROM NoIR. (NoIR's webserver is not working today, 16 Nov 2002. Their telephone number is (800)521-9746 or (734)769-5565)

Sincerely,
..Trevor..

 
 Re: See your dentist on schedule
Author: Bastiana (---.olympus.planet.nl)
Date:   11-16-02 03:59

Trevor,

Thank you so much for making this summary! I'll take it to the doctor in the hospital next monday.

This test for the D-Metabolites is, I hope, possible.

Also I'll inform my dentist about the aknowlegdements! I think he'll be happy to find a explanation for my 'decline'.

I'll order these glasses immediatly now. But this Renin-Angiotensin in the eyes, what is that. I once was with my doctor in Germany, and she asked:'Why are you blinking your eyes so much?' And I responded: 'It hurts so much!' Like needles were picking in my eyes. Is it that?
Below the eyes I also have this white 'pickles', a sort of fatstorage? Due to too high cholesterol? Do you know this?

Well, I have to stay calm, and wait for monday. I am still somewhat 'blurred' by all this. Sometimes also increadible angry! Actually I myself had to do the doctors 'homework'! Weel actually YOU thit all this work...

See you, and thank you
Bastiana

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-16-02 04:47

Bastiana,
I sent you a copy of our most complex paper, explaining how Angiotensin II is at the heart of sarcoid inflammation. This is the research breakthrough that we have made. We have linked together the hormones from the immune system and the hormones from the Renin-Angiotensin System (RAS) and show how they interact to form and proliferate the sarcoid inflammation.

Up until now the RAS had only been known to affect inflammation in the cardiovascular system. But We have explained how it also affects the behavior of the immune system.

That is why a "Heart Drug", Angiotensin Receptor Blockers (ARBs), can have a beneficial effect on Sarcoidosis symptoms.

The point about the eyes having their own RAS is that the same light sensitivity that is exhibited in our skin is exhibited more quickly in our eyes. In just a matter of seconds biochemical signals are being sent down the optic nerve to our brain. And it is impossible to know (at this time) exactly what type of signals they are, and how to block them. The eye does not have blood flowing through it (well, not if it is working properly) and drugs that we take to minimize system wide symptoms (like ARbs) may not have the same effect in the eyes. We need to protect them fastidiously.

..Trevor..

 
 Re: See your dentist on schedule
Author: Bastiana (---.olympus.planet.nl)
Date:   11-16-02 07:08

Trevor,

Although my scienfical knowledge is zero, I start to integrate the several levels.

I once was hospitalized and they made a test of the heart. The conclusion was, that the muskle structure was 'wildered up', irregular. They knew about the sarcdiagnose, but couln't explain this. Do you recognise this as sarc?

Then as I was very ill, I had this feeling as if my heart was extendingly 'big', do you recognise this feeling?

I'll teke this Arbs information also to the doctor.

Thank you
bastiana

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-16-02 07:21

Bastiana,
The feeling of things swelling is pretty common. I remember as a young kid I used to think my arms were swelling. But they were not, of course

In the same way as high levels of 1,25-D can cause your voluntary muscles to twitch, cramp, and spasm, I believe that your heart muscles ('involuntary' muscles)can also misfunction. The solution is to keep your 1,25-D in the range 20-25 pg/ml

..Trevor..
ps: sorry for the science lessons, but your doctors haven't figured out this stuff yet, so the best way for you to survive and flourish is to figure it out for them But you already knew that

pps: you will find other things I have written about cardiac problems on Sarcinfo. Search for "spasm" (the search link is at the top left of this message list)

 
 Re: See your dentist on schedule
Author: Jillian from North Dakota (65.173.5.---)
Date:   11-22-02 19:35

I've just read this thread with great interest.

I too have had horrendous dental/periodontal problems/intense pain in jaw bone/parethesia in the face, etc., for years. My dentist could never figure out why I kept "relapsing." Oh well, since I'm wearing eye protection, not getting any added vit. D in diet and looking for a physician who will prescribe the ARBs/Minocin treatment, I hope never to repeat these episodes.

Belinda, last May you posted about cracked/dry lips! That too has been a major problem for me all my life. I'm NEVER without my "lip goo" and it never clears up (yet ). You also stated "Wouldn't it be a lot easier if they could biopsy the lip to diagnose sarcoidosis?" I was diagnosed with sarc in 1979/1980 by chest x-ray and a biopsy of a salivary gland! The enlightened Internist I had at the time knew of a study the Mayo Clinic was doing to see if sarc could be diagnosed via a salivary gland. He told me that the results of my biopsy were "consistent" with sarc. I never knew if the study was published--anyone know if there a way to find out?

'til later,
Jillian

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-22-02 19:44

Jillian,
Maybe you could contact the author of this study to help track down the research at Mayo you heard about:
"Diseases of the lips"

This review talks about the technique of Fine Needle Aspiration Biopsy used with salivary glands.

Again I want to stress that a simple blood test in any doctors office can measure your D metabolites, giving you the D-Ratio, an excellent diagnostic determinant of the the presence and amount of the systemic granulatomous inflammation "consistent with sarcoidosis".

..Trevor..

 
 Re: See your dentist on schedule
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-14-03 21:54

Trevor,

I found some more information for sarcoid patients who have been frustrated by dental problems. The following articles may help you.

Dry mouth is a common problem in sarcoidosis, especially at night. Here is an explanation of how decreased saliva can cause increased dental caries, especially at the gum line. (It's a long article; be sure to scroll down to read about reduced saliva.) The article has good tips to brush teeth at bedtime and ensure drinking lots of water (not necessarily at bedtime ).

Those who have had problems with gingivitis, will want to read this article about granulomatous diseases and print it out for the dentist. Scroll down to pages 5-7 to read about sarcoidosis. You will find (bottom of page 5) pictures comparing sarcoidosis affecting the gingiva and regular gingivitis, explaining sarcoid is almost indistinguishable.. until a biopsy.

Belinda

 
 Re: See your dentist on schedule
Author: Donna Brown (---.midtn.chartertn.net)
Date:   01-15-03 22:46

Belinda, Meg, Trevor, i just want to thank all of you for your information, and the time you take to answer everyones questions. I know this has to be very time consuming for you. But it does make a person feel much better just knowing whats going on. I just wish the Dr.s and eye Dr.s and dentists would all be as informed as you are!! I saw an opthalmologist about 6 mo. ago. he said there was pressure in my eyes and he needed to see me again in 6 mo. The reason I went to him was to see if sarcoid had damaged my eyes... they burn, itch,are dry, they hurt, and i have blurred vision also sometimes. They really bother me a lot. I never knew I was supposed to protect them from light. I need a lot of light to be able to see well. What would happen to your eyes if sarc was messing with them? my thinking is sometimes very blurry also... my eyesight is very precious to me and I don't want a Dr.s ignorance to cause me to lose it.... I've yet to find a dr to treat me but am still working on it and can't wait to get my vit D tested the right way. i have printed off so many things to take with me, the proper way to do this testing being 1 of them. I thank you all so much because with out you 3 i would be still wondering about so many things... Thank you again, Donna

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-16-03 05:47

Donna,
If you don't have a recent pair of prescription spectacles, why not visit the optician at your local Walmart and get a low cost consultation and their cheapest pair of spectacles and then see if you need so much light to see with. I personally found opthalmologists to be of little help, fussing around, scared to do anything in case it was wrong, but the local Walmart opticians were able to compare me with other people who were well, and assure me that my increased pressure was not that unusual, nor anything to worry about. The spectacles might allow you to cut down on the amount of light you need to see with (its just an idea..).

Oh - and they will also be able to tell you if there is any vasculitis in your eyes. Again, they are comparing them with eyes of healthy people - and that is the better comparison, IMO, than comparing them to eyes of sick people, as opthalmologists do.

..Trevor..
ps: the blurred vision and floaters from time to time is normal with sarc. Everybody seems to get it. It goes away once you have your D levels under control.

 
 Re: See your dentist on schedule
Author: Jo (---.dsl.tds.net)
Date:   01-30-03 07:14

It is so interesting to find others who are experiencing the same symptoms that I have! Maybe it's not 'just in my head" after all! I have been diagnosed with sarcoid of the larynx since the early 80's. Have had occasional problems since then - but nothing as bad as the initial flare-up. Recently though I have had burning mouth,and in the last month extreme dental pain. Dentist says there is no abcess - so where does a person go from there? I have visited the doctor about the 'burning' in the past - to no avail. Has anyone had any luck with treatments - plus how do we know what is sarcoid-related and what is prednisone-related? Gosh, I hate that medication! Would love to talk to anyone about this "wonderful" illness, and/or the side-effects of prednisone... I am also desperately looking for someone else with sarcoid of the larynx! I hear it is quite rare!
Thanks, Jo

 
 Re: See your dentist on schedule
Author: Margo (---.adsl.duke.edu)
Date:   01-30-03 08:12

Jo,

I hope you have time to read various things in this site. As a start, it is helpful to check the links at the top, such as "Why did I get Sarcoidosis" and "Remission in Sarcoidosis."

Also, if you do a search on this site for symptoms, larynx, etc., you will find threads where people discuss symptoms such as yours.

Finally, the information on Vitamin D and sarcoisosis is very helpful for starters. Sarcoid patients produce too much Vitamin D, so they often have symptoms caused by too much Vitamin D in their systems. (Vitamin D is a complex hormone involved in many bodily functions, not just calcium metabolism, as was once thought.)

Good luck!

Margo

 
 Re: See your dentist on schedule
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-30-03 10:25

Jo,

I urge you to get to your doctor and have your serum levels of vitamin D checked. I have a long history of mouth and jaw pain, from long before I was diagnosed with sarcoidosis.

I used to have a job that required a lot of driving, and where I live, that meant I was in the sun all day. (If anyone tells you that glass blocks your production of 1,25-vitamin D, don't believe them.) The more time I spent in my sunny car, the more jaw, tooth and joint pain I had. At the same time, continuous spontaneous fractures of my molars, with numerous large calcium stones found within the dental pulp of each one, had my endodontist stumped. I think these explain why my teeth fractured.

Now I know that high levels of 1,25-dihydroxyvitamin D can cause calcium deposits in soft tissue such as dental pulp, along with the other symptoms of hypervitaminosis. High levels of hormone-D can cause calcium to be pulled from teeth and bones. It's not likely I will have any more fractured teeth; I have had 12. But I share my experience in the hope that someone will be spared going through the same thing.

Please get your blood levels of vitamin D and ACE tested.

Sincerely,
Belinda

 
 Re: See your dentist on schedule
Author: Isabelle (---.proxy.aol.com)
Date:   02-01-03 01:42

I just happened to come across this website and am truly touched to see so many people helping each other to come to some level of an understanding regarding sarcoidosis. I myself am clueless still.

I was diagnosed in June 2000 and what caused the "flare up", for lack of a better word, was when I had my wisdom teeth extracted, I developed a severe rash on my lower legs and swollen ankles. A chest x-ray revealed hilar lymphadenopathy and a granuloma tumor was excised from my forearm (which developed 2-3 months prior to my wisdom teeth extraction).

Nevertheless, I was diagnosed with Lofgren's syndrome, and partially due to shock and denial, have not really researched much about sarcoidosis since my diagnosis.

The reason why I am researching now is because I am considering doing dental impant surgery (versus a bridge) and laser eye surgery and am totally unaware if there are any contraindications for either procedure. I don't want to do something that would flare up my sarc. And, I'm hoping that one of you may be able to guide me in the right direction.

Also, I noticed you guys mention something about sunglasses, Vitamin D, sunbathing... What more should I know and where do I start? When I was first diagnosed, I started searching the web and so many sites regarding Sarcoidosis and eventually felt overwhelmed and stopped searching.
Perhaps I need to start again.

Best wishes to all of you and keep up this incredible support site.
Isabelle

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-01-03 06:43

Isabelle,
If the level of 1,25-D circulating in your blood is elevated, or if there is local sarcoid inflammation in your gums, your teeth can be dissolved into your bloodstream. Reducing your intake of Vitamin D will not only stop this from happening, but it usually improves your general health as well. You should have your D metabolites tested (instructions are at the top of this page) if you are having any dental problems involving resorption or inflammation.

As for eye surgery, you really need to carefully examine the issues here with your surgeon, If you do have the genetic pre-disposition to form granulomatous inflammation (like was found in your arm) then any surgery is likely to increase the chance of infection and increase the formation of granuloma. While it would seem that laser eye surgery might not place you at much risk for this, you need to talk very, very, carefully about it with your eye doctor as well as with a doctor that is familiar with treating the complications which occasionally arise from such surgeries.

If dental inflammation is a problem for you, have a talk with your dentist about starting Minocin therapy (as outlined in this thread). It took about 45 days to totally suppress an abscess on an old root-canal that I had been living with for nearly two decades, and which had nearly required removal of my front tooth. I still have that tooth, and a stack of other enamel crowns, all of which are solidly anchored and work wonderfully!

Where do you start? Well, try the Tutorials at the top left of this page. After that you can use the SEARCH facility at the top left of these messages to look for specific keywords, and then read through the infomation that is here at SarcInfo. Welcome!

..Trevor..

 
 Re: See your dentist on schedule
Author: Marypat (---.proxy.aol.com)
Date:   07-10-03 05:50

Trevor,

Hello! My question...Now that I am having all these 'flare-up' problems should I be having my teeth cleaned? I noticed that you said you won't have your's done.

Every one of my molars has had to have a crown due to cracking/disintegration. After the last crown that was put in I had immense pain in the jaw under where the work was done for months.
I kept going back and having them check for something and 'nothing' was found. (From reading here I know why!)

Thanks!
Marypat

 
 Re: See your dentist on schedule
Author: Sue (---.ssa.gov)
Date:   07-10-03 14:06

I'm also interested in knowing more about the teeth cleaning and whether you should not do it at all or whether its just if you're having dental problems.

I have lots of fillings due to well water or spring water in the various houses I lived in when I was a kid but I've never had any other problems except for these receding gums I'm now experiencing. I think the dentist did say he thought I was having TMJ problems about a yr. ago and his solution was to drill down the teeth on the opposite side, believe it or not, I have not had a reoccurrence.

One other thing I noticed in reading this thread was about the swelling, Trevor, you said you felt like your arms were swelling. The last week or so I've had a terrible pain in my side with ribs being sore to touch but inside the ribs, both sides, felt like they were swelling almost to bursting. Is this a herx or the sarcoid?

Wishes to all for better health and my thanks again for all your input.

Sue (Baltimore)

 
 Re: See your dentist on schedule
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-10-03 16:05

Marypat,

I know you directed your question about dental cleaning to Trevor, so I hope you don't mind my answer.

I do go in for dental cleanings at my dentist's office. I have a dentist who is very interested in sarcoidosis and reads the articles from PubMed and other sources that I take to him. The office tries to steer me to a room with less window light so I can relax.

One thing I have found that helps me is: when I have my teeth cleaned, I "rinse and spit," instead of using the suction device to continuously suck up that stuff from the mouth. Each time I've tried the suction, I've ended up feeling ill for a couple of days. The reaction came on a few hours after I left the hygenist's chair, and it felt like the flu, with aching all over. All I could figure was that it was a reaction to unintentionally swallowing some of the stuff scraped off the teeth or stirred up from the gums. My dentist decided that whatever the cause, it's not worth me enduring a flare of symptoms.

Now I "rinse" and "spit" with the aid of a cup. (Most newer dental offices here no longer have the old-fashioned sink beside the dental chair.) The hygenist understands, so it's no big deal to her. I may have to remind them, but I fare much better with my dental cleanings now - no flares.

Belinda

 
 Re: See your dentist on schedule
Author: Marypat (---.proxy.aol.com)
Date:   07-10-03 17:28

Belinda,

Thanks for sharing your experience!

I've printed out some of the materials related to sarc and intend to take them next week to my 6 month cleaning.

Marypat

 
 Re: See your dentist on schedule
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-10-03 21:29

Sue,

The TMJ is another joint, so sarcoidosis patients may have trouble with it, just as we have trouble with inflammation in our ankles, knees, hips, etc. My endodontist became used to giving me little breaks for my achy twinges of my TMJ during root canals.

Common causes of rib pain are inflammation of a rib or ribs, cartilage or chest muscles. One of our readers reminded me that his significant chest and rib pain, costochondritis, led to chest X-ray and eventual diagnosis of sarcoidosis. You might want to look up "costochondritis," a word describing benign inflammation, in case your doctor throws out that word when you discuss these symptoms with him/her. My experience was that I had this type of pain both as a symptom and as a Herxheimer flare. Heat therapy and hot baths provided me with some relief, especially from muscle twinges.

Belinda

 
 Re: See your dentist on schedule
Author: Marypat (---.proxy.aol.com)
Date:   07-11-03 04:32

Trevor,

Hi! I know you are busy! However, do you have any comment about dental cleanings? I'm to have another next week.

Add'l info:

All my molars but one have disintegrated/cracked and had to be replaced by crowns over the years. My dentist doesn’t understand why my gums are so bad [bleed all the time and are receeding] even though I use a Sonicare toothbrush at night and an Oral-B in the morning and floss a number of times a day. [I suspect he doesn't believe me.] Any time I have any dental work done I have significant pain for an extremely long time afterward. I had an abscess/infection for years that was under a previously done root canal tooth/crown that a specialist drilled down into and packed with heavy duty antibiotics a couple of times and gave me antibiotics and it took an abnormally long time to clear up. This site still looks like it might have a slight problem.

Thanks so much for your tireless effort on my/our behalf!

Marypat

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-11-03 04:45

Marypat,
Everything I have to say is in the messages above. All my dental problems were due to sarcoidosis, and they went away 45 days after I started Minocycline therapy. My memories of them are enshrined in this thread.

..Trevor..

 
 Re: See your dentist on schedule
Author: Sue (---.ssa.gov)
Date:   07-11-03 06:00

Thank you Belinda.
I did check out the site and a couple months ago the dr. did mention that I might have the Tietze syndrome, although the site says that Tietze and costochondritis are not the same it also says that Tietze is often referred to as costochondritis. So you just may have hit the nail on the head. I'm continuing to use the heating pad and Tylenol as needed which does allow me to get some sleep. I guess I'll give it some time to see what happens.

Thanks again and my best to all.

Sue

 
 Re: See your dentist on schedule
Author: Debby (---.proxy.aol.com)
Date:   07-19-03 12:57

Thanks everyone for the help here. I was diagnosed with Sarcoidosis three years ago and have high calcium levels too. I have been suffering with excruating pain for the last week. I had dental surgery a month ago to remove a root remnant of a tooth that had broken and hadn't felt well since that time. The pain started out as ear ache and then went to my jaw and then to half of my mouth, constantly and no pain killers brought any relief.

My dentist thought I might need a root canal but said I probably have an infection and put my on penicillin which did nothing for me, he also gave me tylenol 3's which I think made me very sick. I got really scared when I passed out, couldn't breathe properly, had chest pains and felt light headed and dizzy before this happened and thought it might be a reaction to the tylenol 3's. He suggested I still perservere with the Pencillin even though I knew it wasn't doing anything for me but luckily gave me a prescription for Minocycline that he said I could start taking today (Saturday) if nothing had improved. I got the impression though that he didn't think my pain could be that bad based on what he saw and wasn't overly sympathetic to me.

After reading all your postings, I was so relieved to see that Minocycline was recommended. I only have a seven day supply of it from the dentist but will be visitting my doctor on Monday to make sure I continue with it as suggested.

Everyone is so helpful on this site. I feel like a giant weight has been lifted from me, I was starting to feel like I was doomed to a life of constant pain and no-one understanding what it was like. I now will print off lots of information for my dentist so that he can understand this disease better.

As an aside about two months ago I also had a really bad sinus infection. My physician prescribed Zithromax, a five day antibiotic. It cleared up the sinus infection but also gave me a sense of wellness that I haven't felt for many years, I had so much energy and was feeling so well, I couldn't believe it. Too bad it didn't last for too long due to the dental stuff I've been through (I've also lost many teeth diagnosed as periodontal disease but probably through sarcoidosis I now believe). Is Zithromax the same type of antibiotic as Minocycline? Just curious, wondering if it might be helpful to sarcoidosis sufferers as well?

Thanks ago for the great comments and advice.

Good health to all,
Debby

 
 Re: See your dentist on schedule
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-19-03 13:05

Debby,
Chances are that Doc told you to take 100mg twice a day. That dose will likely make you feel very ill indeed. Most sarcoidosis patients have to start off at about 50mg every 2 days. So your 1 week supply might last a month

Anyway, please read the tutorial at the top right of this page called "Minocycline Dosing Issues" to give you more information about this. And make sure you read the discussion about Herxheimer shock so you know what to expect as those bugs get killed off...

..Trevor..

 
 Re: See your dentist on schedule
Author: Serc (---.sligo.indigo.ie)
Date:   07-19-03 17:15

Debby & Everyone

God I can really sympathise with you, I had a tooth problem, the Dentist
wanted to give me root canal but after one treatment, the tooth broke in two, there was nothing left but to extract. The pain I had been feeling was transferred to my ear and my right eye - But when the dentist went to take the tooth out, he couldn't get it all - He really tried hard but that root just wasn't coming out - for two weeks I have been on Penicillin - which makes me incredibly sick and Aulin for pain which makes me incredibly weak. The Dentist now won't take responsibility for the extraction becuase of my Sarcoidosis - and now I have to go on a waiting list to see a surgeon to have the tooth ( or what's left of it) removed.

The dentist says the root is fused to the bone - is there a problem with calcium I wonder ? The most annoying thing is that the Root Canal may have held after all !!

By the way I often suffer tooth pain, and my lips are constantly sore and dry - I have had numbness on and off for a year in my face - nose - lips and arms - prior to being diagnosed with pulmonary sarcoid - funny being an asthmatic and used to shortness of breath, I was breathing better than ever and still am ( thankfully) before being diagnosed - it is these other unexplained changes that are really hard to deal with.

Serc
still smiling despite the unsightly gap in her teeth

 
 Re: See your dentist on schedule
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-19-03 21:28

Debby,

Zithromax is a very broad-spectrum antibiotic unrelated to the tetracyclines that have shown to be the most effective in killing the CWD mycoplasma. Perhaps the Zithromax killed off some organisms that your body was overreacting to in a similar fashion.

Minocycline is the most effective of the tetracyclines and should give you back that sense of well-being.

Meg

 
 Re: See your dentist on schedule
Author: Meg (---.188.239.198.euc.wi.charter.com)
Date:   07-19-03 21:39

Serc,

Your symptoms you describe as being really hard to deal with are usually due to elevated levels of the hormone-D in sarcoidosis patients. You'll find more info about hypervitaminosis-D symptoms here

Ask your doctor to check your levels of 25-D and 1,25-D asap. Info on how to do that is here

Your asthma and sarcoidosis may be more closely related than you think. You can read about it on this thread

Welcome to SarcInfo,

Meg

 
 Cardiac Sarcoid
Author: Patrick Borkheim (---.netvigator.com)
Date:   10-06-03 03:13

Hello everyone!
I am 34, diagnosed with sarcoid 4 yrs ago and with cardiac sarcoid 2 yrs ago. I have an ejection fraction of 15 and have just had implanted a Cardiac resynchronization therapy- defibrillator. I am feeling better but have noticed increased bouts of extra beats.
Does anyone know anything that might be able to help me, has anyone had cardiac sarcoid and fought through it?

Thank you for the site and this opportunity- just talking makes me feel a little better.
Patrick

 
 Re: See your dentist on schedule
Author: Freddie Ash (---.ipt.aol.com)
Date:   10-06-03 06:37

Hi Patrick

This is Fred in WV. I have had sarcoidosis since Aug 1972 but was not diagnosed until Feb 1982. I have a lot of organs involved but now have mostly heart problems.

Your friend in sarcoidosis
Freddie

 
 Re: See your dentist on schedule
Author: Admin (---.dsl.dock.net)
Date:   10-06-03 06:45

Patrick,
Cardiac sarcodosis is now being healed by antibiotic/ARB therapy. Wendy just got a clean bill of health from Johns Hopkins after her cardiac MRI completely cleared. It took about 6 months of therapy.

She needs no pacemakers, no nothing. It is never too late to start the recovery from this disease.

..Trevor..

 
 Re: See your dentist on schedule
Author: Tom Rogers (---.biz.rr.com)
Date:   10-06-03 09:46

Patrick,

Just wondering how you were diagnosed with Cardiac Sarcoidosis. Was there a certain test you had?

Thanx and I wish you the best in overcoming Sarcoid. You can if you follow Trevor's protocol outlined on this website!

-Tom

 
 Re: See your dentist on schedule
Author: Marilyn (---.nas.onetel.net.uk)
Date:   02-04-04 17:31

Greetings Trevor......

I have been following your advice re Vit D and since eliminating foods, fish oils and multivit with Vi t D seem to be feeling better aches and pains wise.

Am awaiting blood cultures for bacteria requested by Doc before beginning the protocol as I want him on my side totally...he has been sympathetic till now. (If cultures are negative I will just have to figure out the next move.)

Meanwhile dental problem: Childhood rootcanal flare up after high Vit D two years ago. Root canal refilled and now again flaring up with abcess and swelling of gum. ( lasted for two days and then subsided !) Dentist says either gum infection ( treatment antibiotic injection) or a leaky root canal. My question is which antibiotic to ask for if he wants to inject .... should I ask for antibitotic even if he has to redo the root canal. Or just have the tooth out and ask for abx. I have checked the sites on this thread and not sure what to do.

Re: dental anesthetic: I go jittery and palpitating if adreniline is in it, so always ask for a non-adreneline anesthetic. is that the same as not having epinephrine? In UK the one I seem to do ok on is called Cytomist, if thats of help to anyone else.

Second query: Possible Hypo Thyroid: I have just had a TSH test. upper level in UK is 5.and my test is 4.5.....The Thyroid Charity I queried on this says new US treatment is now given for readings above 2.5, I have had further T3,T4 and one other blood test taken and waiting results. I have always been borderline hypothyroid, long family history of it and come from Lake Erie region which is low in iodine. I dont know much about the inter relation between thyroid and sarcoid.

My query is.....if medication is prescribed, which one is the least inoffensive re: sarcoid and which wont kill off the thyroid gland and will accommodate with the protocol abx treatment........or should I just do the protocol and hope the thyroid sorts itself out.......

Many thanks as ever for your help.......

Marilyn

 
 Re: See your dentist on schedule
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   02-04-04 18:57

Hi Marilyn,

Thyroid problems are often related to sarcoidosis. Since your TSH is borderline, you might be able to treat the sarc first and see what happens. Ask doc about it.

Don't be surprised if you blood cultures are negative. This is not conclusive evidence of no mycoplasma. The bacteria live within the granulomatous tissues, not usually in the blood. And they are quite slow growing and difficult to culture. I hope this won't discourage your doctor. Your symptoms and D-tests should be enough proof to start the Benicar and antibiotics.

Sarcoidosis often causes dental inflammation. Ask your dentist if you can treat your sarcoidosis and postpone the dental work. If not, I suggest you follow his recommendations for an antibiotic. Epinephrine is a synthetic form of adrenaline. To be on the safe side, you should ask for local anesthetic that doesn't contain epinephrine or adrenaline.

Good luck,

Meg

 
 Re: See your dentist on schedule
Author: Marilyn (---.nas.onetel.net.uk)
Date:   02-05-04 10:34

Meg... Thanks for your reply.....

if the problem is not in the root canal , what would be preferable.....an injection directly into the site of inflammation or a systemic pill to be taken probably for a week..... Should I ask for minocycline? Would another antibiotic chosen by the dentist retard the starting of the protocol ?