Sarcoidosis Answers for Sarcoidosis Physicians and Nurses

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 The material here provides useful background, but much of it is now out-of-date.

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How a Pathologist can see Bacteria causing Sarcoidosis

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Weaning from Prednisone

Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

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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 1^st 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

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strange sensations

Author: Lisa (---.public.svc.webtv.net)
Date: 05-16-02 19:30

I was diagnosed 2 years ago with Sarcoid. I have the typical symptoms ( shortness of breath, dry cough, swollen ankles, etc..) but recently I noticed the left side of my face feels numb. It's not BellsPalsey or sinuses.Has anyone else noticed this?

Re: strange sensations

Author: Denise Testa (---.connect.com.au)
Date: 05-16-02 21:12

Certainly,

I have been getting facial numbness on and off on the left side of my face for the last six years. I was diagnosed with sarcoid three years ago.

It starts around the orbit of my left eye, goes done the left side of my nose and into the lip and gums. It also blocks my nose on the left side. There is also swelling which goes along with it.

My left eye feels funny, it tears more and it hurts when I move it sometimes. The lid also swells sometimes too.

No one has an explanation for it - other than it involves the trigeminal nerve.
It is not trigeminal neuralgia which is ususally associated with pain of short sharp duration.
I have had an MRI which showed nothing, and ultrasound which showed nothing, although the lady who did the test noticed my facial swelling and lop sidedness as did a doctor who saw me directly afterward.

They have no explanation for it but I believe it is the uveo parotid fever of sarcoidosis although I don't always have a fever - but I have had night sweats when I have had this symptom. It can last for up to three or four days.

Oh - the other explanation for it is cluster headache variant - an immunologist and two opthalmologists have given me this diagnosis.

The third one is that I do something to the alignment with my head and neck which presses on the nerve - also an opthamologist.

GPs are willing to buy it but not the specialists so far.

The jury is still out for me on this. I had not had it for several months but had it a week or so ago.

Denise

Re: strange sensations

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 05-17-02 05:28

Denise,
The next time this happens, have your doctor test your "serum 1,25 dihydroxyvitamin D3" level. Bet ya a beer that it's high.

..Trevor..

Re: strange sensations

Author: Cher (144.138.225.---)
Date: 05-18-02 06:48

Hi Lisa,
Not only do I have these problems with my face but also with my limbs. Mine also moves from one side of my face to the other as with my limbs, it may be my left leg today & my right arm tomorrow. So don't worry you are definitely not alone. Sarcoid is the strangest disease I've ever known & I think we are destined to live with these strange sensations until some genius finds some answers, but for me knowing that I am not the only one it happens to makes it much less scary. Hope it helps you to know so as well.
Cheers & stay positive
Cher

Re: strange sensations

Author: Denise Testa (---.connect.com.au)
Date: 05-20-02 17:58

When I first experience these symptoms in my very late teens and early twenties I was told I had agoraphobia and packed off to psychiarists, psychologists and self help groups. I soon realised I was not a classic agoraphobic - though the symptoms had stripped me of my confidence to travel etc. What also stripped me of confidence was the fact that people were telling me I was 'imagining' all these things.

Eventually, blood tests etc started to go awry and one cannot 'imagine' that. Nor can they 'imagine' they have hilar lympadenopathy.

Denise

Re: strange sensations

Author: Caroline McGuirl (---.proxy.aol.com)
Date: 05-23-02 13:44

Dear Denise:
I have had MRI's, CAT scans, Gallium Scan, x-rays etc. and they do not show all that is going on with Sarcoidosis. My doctor, an internist agrees with me on that.
I can say this to you. Be persistent. If you have it...you have it....picture or no picture.
I just wish we had support groups for people with Sarcoidosis. Thank goodness for the internet and sites like these.
I have numbness, weakness all the sensations you mentioned. Sometimes my jaw aches..teeth ache although I see the dentist twice a year and he finds nothing...on x-rays either.
Why this disease is so mysterious....I don't know. Does anyone?
Sincerely,
Caroline

Re: strange sensations

Author: Denise Testa (---.connect.com.au)
Date: 05-24-02 01:36

Too right I showed up nothing on a gallium scan. I had four scans total within a week and twice they forgot about me completely and I had to complain before I got back in for yet another scan. I really don't know whether the right hand knew what the left was doing.
I reckon they lost my records at least once. When I went back to my immunologist he was surprised I did not have a scan to show him.

Denise

Re: strange sensations

Author: Marilyn (---.lynnet.com)
Date: 05-27-02 17:47

I love your comment that one "cannot 'imagine' hilar adenopathy"!

For so long (leg aches began in childhood.....but went away......and came back, ETC), I've had variations on aches and pains in muscles - pains that would wax and wane.......then a period of 2 1/2 to 3 years in the late 1970s/early1980s when there was a lot of fatigue - had little energy to do anything - would start doing something and just want to nap. After many complaints over many decades (I'm approaching 60), I began to feel that I was not taken seriously or that I was thought to be a hypochondriac or responding to life stresses (someplace along in there, had paresthesias, which waned)...until more full-blown symptoms began fall, 2001........and chest x-rays, then CT scan confirmed lymphadenopathy in my chest, which included an enlarged paratracheal node, which the lung specialist said he sees as a 'hallmark' of sarcoidosis!

This HAS been good as far as weight loss goes, but is not a good way to lose those extra pounds!

Re: strange sensations

Author: Lynne (---.cache.pol.co.uk)
Date: 05-28-02 16:15

Hi Yes your right I have the same feeling in my face and my left thigh. don't know if its sarcoid or not but Iam going to ask my doctor next time

Re: strange sensations

Author: Diane M. (---.tnt1.mercerville.nj.da.uu.net)
Date: 05-28-02 20:02

I am experiencing numbness of both forearms, fingers, face, and legs at present, although more right than left. I was diagnosed in 1985 from an open lung biopsy, then just my eyes, lungs and parotid glands were hit. This episode (1998 to present) also includes my liver, bone marrow, voice box, skin, muscles, joints, salivary glands... it is awful. I am getting care at Johns Hopkins Sarcoidosis Clinic...they at least got me out of the bed. I have problems interpreting words, I get lost outside the home at times, I fall.... I have had MRIs, Cat Scans, Spinal Taps, EEGs...cannot demonstrate neuro-sarc. I am presently on Prednisone, Methotextrate, Neurontin among 25 or so others. Thank God I found this board..the numbness is scaring me. I awoke last week in the middle of the night and my right leg felt as if it had been iced...not even tingling, totally dead. I pounded it and it went to pins and needles, then to "normal". No one knows what is wrong! Scary...

Re: strange sensations

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 05-28-02 20:20

Dianne,
It sounds as though you have really been put through the mill by your body's immune system.

Has anyone explained to you why you are on so many medications? 25 or or so seems to be pretty excessive? Have you been told what they are supposed to be doing? Are they working? Do they make things better or worse? (it sounds as though they are not 100% effective)

Anyway, welcome to SarcInfo, and I hope you find some knowledge and experiences here that will help you.

..Trevor..

Re: strange sensations

Author: Cher (144.138.225.---)
Date: 05-28-02 22:41

Daine,
I understand what you are going through with many of the same symptoms. Just know that you are not alone & obviously you are in a good place to have a Sarcoid Treatment Centre. Take Care, Stay tough.
Cheers & stay positive
Cher

Re: strange sensations

Author: shelaghm (---.proxy.aol.com)
Date: 06-02-02 11:41

hi

can anyone help me to differentiate between pain caused by sarcoid and pain as a result of arthritis?

i have had sarcoid for about eight years; the arthritis in my neck a little less. over the years i have had several bouts of severe pain in my left arm; on one occasion the pain was so severe i was unable to move my arm at all, another i was unable to lift anything or use the left hand because of the knock-on effect on the arm.

recently i had a bad flre up of the pain once again and this time my consultant injected into the shoulder joint with corticosteroid(?) - this seemed to work for a while in that the pain went away BUT i soon realised that the movement in the arm was impaired - and this has not improved; in fact there is quite marked weakness there. iam also suffering from frequent attacks of 'pins and needles' which i never had before.

also i have recently noticed numbness at times in my right hand - this

Re: strange sensations

Author: Cher (144.138.225.---)
Date: 06-02-02 12:05

Hi Shelagm,
I can't help you differentiate (I doubt if anyone can because there are so many vairants in this disease), but I do know with myself & several of my friends we suffer in the same way. I have not found a Dr who can tell me which pain is Sarcoid pain & which is arthritis but i have been told that it could be from the imflammation caused by the Sarcoid & I've also been told that Sarcoidosis is not painful. I believe some of the symptoms we have to accept as just being part of Sarcoid.
Pins & needles & numbness in my limbs have become a part of every day life, sometimes the pins & needles turn into numbness, sometimes they just stay for a few hours & go away & sometimes I just get the numbness out of the blue. I hope someone can give you the real answer if that's what you need but until then I always think it helps to know that you are not alone with some of these out of this world symptoms.
Cheers & stay positive
Cher

Re: strange sensations

Author: shelaghm (---.proxy.aol.com)
Date: 06-06-02 09:58

hi cher

thanks for your answer - you're right; it's a great help to know that there's someone else out there who is experiencing the same symptoms (sorry, that sounds really selfish!!! - but you know what i mean) - there is so little support in england for sarcoid sufferers - i think our gps prefer to pretend it doesn't exist.

keep smiling - and thanks

shelagh

Re: strange sensations

Author: Ken (---.proxy.aol.com)
Date: 06-06-02 11:30

Consider a "blink reflex test" for facial numbness and EMG for extremity numbness. Both are probes and sensors measuring nerve response to electrical pulses. These tests will not necessarily determine cause of issues but will validate that it's not "all in your head". I failed both of these tests and it made all of my doctors to set back and rethink what I had been telling them.

Re: strange sensations

Author: Di (---.in-addr.btopenworld.com)
Date: 06-11-02 08:35

I have pulmonary sarc. and have recently started taking pred. Since I started I have had some numbness on the left cheek just below the eye, my doctor did say it could be sarc. related, so I was both sorry and relieved to find this thread confirming this, but do you think its been triggered by the pred., or is that just coincidence?

Di

Re: strange sensations

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 06-11-02 08:47

Numbness (often called 'neuropathy') is common in sarc patients. It is caused (IMO) by the actions of 1,25 Dihydroxyvitamin D3 on the Brain and Central Nervous System (the details of how it does this are in other threads).

I doubt it is related to the prednisone, most of the effects of prednisone are more serious than this.

..Trevor..

Re: strange sensations

Author: Caroline McGuirl (---.proxy.aol.com)
Date: 06-11-02 11:08

Dear Trevor:
I too, had numbness in my left hand in two fingers and it seems now to have gone away. At first I was worried but I did nothing about it...just mentioned it to my doctor.
Has anyone had the numbness and have it gone away?
Caroline

Re: strange sensations

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 06-11-02 11:16

Yes, as the concentration of 1,25 Dihydroxyvitamin D3 waxes and wanes you should expect the neuropathy to change. There are two cycles at work here, a short term (3 day) cycle and a longer term (2-4 month) cycle. The neuropathy seems to ebb and flow over the longer time span.
..Trevor..

Re: strange sensations

Author: Dana (---.tnt1.longview.wa.da.uu.net)
Date: 07-18-02 20:43

Wow. I was diagnosed with Sarcoid in 1997. Last year at my yearly checkup, my doctor told me that the Sarcoid was either gone or in remission. However, these past two months or so, all my old friends - the achey joints, being hot all the time, raging headaches, fatigue, and sinuses that feel like they are blocked with cement - have come back to visit me. Does this ever just go away?
Anyway, after reading your posts, I realized that I have just been pushing the importance of my numbness in my hands and arms to the back. It gets to where I can't hold anything in my hands, they get so numb.
Anyway, thanks for this forum, and thanks for hearing me out.
Dana

Re: strange sensations

Author: Caroline McGuirl (---.proxy.aol.com)
Date: 07-19-02 09:58

Dear Dana:
I read your email......do you find that you drop a lot of things? I had the numbness and tingling and that did subside a bit....but I drop so many things during the day......?
Caroline Mcg.

Re: strange sensations

Author: Cher (144.139.191.---)
Date: 07-20-02 13:24

Hy Dana, Caroline & everyone,
I bet between the lot of us we could make the worlds best mosaics lol. I look out all the time for the 99 cent specials on new mugs because of the amount I go through. If I have to carry my own plate to the table or or any such thing I only use plastic. I am absolutely terrified if I go to anyone else's home & the give me china or glass ware. I have started taking Acryllic glasses with me if I'm going anywhere for a drink.
So yeah we're all doing really well for the recycling efforts around the world.
Cheers everyone & stay positive
Cher

Re: strange sensations

Author: lynnette battle (---.ia3.marketscore.com)
Date: 07-21-02 22:04

i have had sarcoid for 8yrs. the other day i came home sick from work and could not drive my car home my manager drove however as the day went on my lower lip started to tingle and became numb this has happened twice in the past few days. 07-21-02

Re: strange sensations

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 07-21-02 22:29

Lynnette,

I'm not sure I understand why you couldn't drive, but I can tell you I have tingling/numbness in my lips. Sometimes my lips feel swollen, but they do not look swollen (parasthesia.)

Here are some links which note other cases of lip involvement in sarcoidosis:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10761605&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9421227&dopt=Abstract
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9127377&dopt=Abstract

My lips can crack and peel. I believe this is because when my mouth is dry, my lips get so dry they stick together, which leads to the cracking and peeling. Here is an article about that. http://www.intelihealth.com/IH/ihtIH?d=dmtContent&c=340388&p=~br,IHW|~st,24985|~r,WSIHW000|~b,*|

See if this symptom gets better by SIGNIFICANTLY reducing your exposure to sunlight. That helped me.

Belinda

Re: strange sensations

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-22-02 04:54

Lynette, get your doctor to test your serum 1,25 Dihydroxyvitamin D3 and your serum 25 Hydroxyvitamin D3 and your serum Angiotensin Converting Enzyme.

Imediately. While you are still having problems.

..Trevor..

Re: strange sensations

Author: Penny (---.cache.pol.co.uk)
Date: 07-23-02 03:47

Dear All,

I haven't been getting numbness, but I have been getting twitching nerves a lot just lately, and headaches too. I am getting a bit paranoid because of my mum dying from motor neurone (ALS) last year. So I am kind of hoping that these muscle spasms and twitching nerves ARE sarc related...

My sister has just been diagnosed with Addisons Disease too, funny how these things target one family huh...

Take care all, and thanks for the paper Trevor, very interesting indeed. As far as I know I have never had my serum 1,25 Dihydroxyvitamin D3 and serum 25 Hydroxyvitamin D3 checked, but next time I see a doctor, I will certainly request it.

Thanks
Penny

Re: strange sensations

Author: Caroline McGuirl (---.proxy.aol.com)
Date: 07-24-02 13:39

Dear Penney:
I saw where in your first sentence you mentioned not having numbness......and I thought back...when I first started with symptoms of Sarcoidosis...numbness wasn't one of the first symptoms for me. It was just recently that I had numbness in my left hand and arm. I think that many of us get various symptoms at different stages of this disease.
I was diagnosed in Jan 2000 but I know now that I had Sarcoidosis long before then.
Caroline Mcg.

Re: strange sensations

Author: Penny (---.cache.pol.co.uk)
Date: 07-25-02 04:50

Hi Caroline,
Yes I think that it is as time goes on that things become connected. I am sure that I have had sarc a lot longer than the 3 years it has been diagnosed. I think I have found out more about it in the few months that I have been coming onto this site than in all the years previously.

Take care

Re: strange sensations

Author: Admin (---.vnnyca.adelphia.net)
Date: 07-25-02 09:45

Penny,
Although it is possible to contract the sarc genetic predisposition by mutation of genes (see links below for tutorial on this) it is far more likely you were born with it.

The trigger for the actual inflammation was probably recently, but you were probably suffering from bad 1,25 Dihydroxyvitain D3 symptoms like fatigue and etc before that.

..trevor..

Re: strange sensations

Author: Cher (144.138.225.---)
Date: 07-25-02 09:46

Hi Everyone,
Penny I too had alot of twitching & pins & needles before I ever had numbness. Even now i usually get some pins & needles before the numbness set's in.
Like you & Caroline I was only diagnosed in 2000 but had symptoms for years & years previous. This Phorum is the best thing that has happened to most of us I think because we now have answers to questions that we have had for so many years.
The best thing is when we start fearing that something even worse than Sarc (if there is such a thing) is happening to us, we can come to the Phorum & find that someone else has been through whatever is scaring us so much.
Cheers & stay positive
Cher

Re: strange sensations

Author: Penny (---.cache.pol.co.uk)
Date: 07-25-02 14:44

Hi all,

Yes indeed Trevor, long before I was diagnosed I was suffering badly from fatigue and skin lesions, or plaques, in fact when I think back these started in earnest when I was pregnant with my second child 9 years ago. I had the skin plaques, terrible shortness of breath and several bouts of kidney stones during the pregnancy, also just after my son was born I had a bout of rheumatism so bad that I couldn't walk for several weeks. None of this I even connected to sarcoidosis until now. I also had quite a few kidney problems as a child.

Thanks to everyone for helping ease my worries, this site is a real sanity saver

Penny

Re: strange sensations

Author: Martha Cox (---.spart.sc.charter.com)
Date: 02-07-03 05:50

started saturday my face just started drupping and my eye would not shut. then sunday morning i could hardly talkbut the doctor told me that it was fluid behide my ear or just stress. could you give me a answer plaese worried.but also he said tit could be bellspaley. so if any one has any infrormation please send me what you have

Re: strange sensations

Author: Admin (---.vnnyca.adelphia.net)
Date: 02-07-03 05:58

Martha,
It sounds awfully like Bell's Palsy. You have to take action immediately to guard against that possibility.

Stay indoors and immediately cut out everything from your diet containing Vitamin D. Stop all medicines containing Vitamin D (calcium supplements, Cod liver Oil, Fish capsules, etc)

Bells Palsy (in sarcoidosis) is caused by high levels of 1,25-D in the bloodstream. Get your D metabolites checked TODAY. (yes, I know you will have to go outside to get to Doc's office, get somebody to drive you and make sure no sunlight falls on your skin) (Doc's nurse can draw the blood)

If you do not stop this from getting worse you will end up disfigured for some time (months to years).

If Doc doesn't know that D causes Bells Palsy, print out the paper we posted just yesterday at CHEST, the Journal of the American College of Chest Physicians, at URL
http://www.chestjournal.org/cgi/eletters/123/1/18

..Trevor..
ps:also print out the reference we give there to Bells palsy in sarc.

Re: strange sensations

Author: lyn (---.proxy.aol.com)
Date: 04-06-03 19:08

Maybe someone can help me... lately i wake up with my hands and arms numb... and a pain in my right leg where i cant sleep on that side.. but even worse... my right eye is starting to twitch... and when i try to open my eyes wide my right one wont.. its open.. and it does close.. but sometimes when it twitches a lot .. the right side of my face feels funny...including my jaw and ear... sometims it does it a lot and sometimes not at all.. i just had a pic taken by a friend and my eye seemed to droop in te pic.. ive never had this before... does anyone know what this is????/

Re: strange sensations

Author: Meg (---.188.244.147.euc.wi.charter.com)
Date: 04-06-03 21:45

Hi Lyn,

The numbness in your hands and pains in your legs that you describe are common symptoms of elevated 1,25-D.

You are right to be alarmed about your facial and eye symptoms. This could be a sign of Bell's palsy which is serious and can be permanent if not treated early. Read Trevor's message to Martha right above yours and follow his advice. This is very important.

Please let us know what happens.

Meg

Re: strange sensations

Author: Stephanie (---.proxy.aol.com)
Date: 05-17-03 12:38

Hi All

Today I had gone to the Dr's For the second time with numbness on my left side of my face and left arm. I also am having tingling in my lips and face . He just gave me something for allergies and said I had fluid in my left ear. he also mentioned Bell'spalsy.The Dr's don't seem to be worried but I feel very worried I am in my late forty's does anyone have any advice and should I check into this further? I looked forward to hearing from anyone . Thankyou Stephanie,

Re: strange sensations

Author: Meg (---.188.232.59.euc.wi.charter.com)
Date: 05-17-03 13:02

Hi Stephanie,

I used the search feature of this site to find what Trevor has to say about Bell's Palsy. Here is his advice to Martha who reported symptoms similar to yours:

Martha,
It sounds awfully like Bell's Palsy. You have to take action immediately to guard against that possibility.

Stay indoors and immediately cut out everything from your diet containing Vitamin D. Stop all medicines containing Vitamin D (calcium supplements, Cod liver Oil, Fish capsules, etc)

Bells Palsy (in sarcoidosis) is caused by high levels of 1,25-D in the bloodstream. Get your D metabolites checked TODAY. (yes, I know you will have to go outside to get to Doc's office, get somebody to drive you and make sure no sunlight falls on your skin) (Doc's nurse can draw the blood)

If you do not stop this from getting worse you will end up disfigured for some time (months to years).

If Doc doesn't know that D causes Bells Palsy, print out the paper we posted just yesterday at CHEST, the Journal of the American College of Chest Physicians, at URL

..Trevor..
ps:also print out the reference we give there to Bells palsy in sarc.

Stephanie, what is the extent of your sarcoidosis involvement and how is your doctor treating it? I hope you will take quick action about these serious symptoms to avoid any permanent damage. Please let us knnow how you are getting along.

Meg

Re: strange sensations

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 05-17-03 13:15

Stephanie,

I used to have tingling in my lips and face, too, and I suggest you get the blood tests done as soon as possible to assess your vitamin D metabolites (25-hydroxyvitamin D and 1,25-dihydroxyvitamin D), as described in the patient tutorials above. (How does Doctor measure my ACE, and my D-metabolites?)

By carefully following Trevor's protocol of conservative antibiotic therapy and angiotensin receptor blocking drugs while controlling all sources of vitamin D, you should soon see a resolution of these symptoms. I know I did. Although this treatment requires some education on your part, and finding a doctor with whom you can share the information, the results are certainly worth the effort.

You may have to be rather persistant with "invisible" symptoms such as these, but they are simply another sign to you as to what sarcoidosis is slowly doing to your body. You have come to the right place for help. I suggest you begin by reading the patient tutorials at the top left corner of the page, if you haven't already.

Once you have your blood test results with the ACE and vitamin D readings, Trevor will be happy to assist you and/or the doctor with interpretation of them. The forum is always here, should you have other questions.

Best wishes,
Belinda

Re: strange sensations

Author: bpeck (---.dialup.mindspring.com)
Date: 05-17-03 16:45

They symptoms you guys are experiencing overlapp quite alot with Lyme symptoms - including the numbness, tingling and Bells Palsy.
I would get the D metabolites checks as advised - but if they're normal
then I would STILL follow the anitbiotic regiment on this list (Minocycline)
as it'll work on Lyme as well. Many Lyme tests are false negative if you've been on immunosuppressants or had the disease undected for any lenghth of time -
Good luck.
Barb

Re: strange sensations

Author: Admin (---.vnnyca.adelphia.net)
Date: 05-17-03 19:29

Barb,
Actually, the corollary for what you are saying is also true - that many chronic-Lyme patients (at least 1 in 10) will suffer from the vagaries of the Th1 immune reaction (that produces the excess 1,25-D) and benefit from the ARB therapy that is so necessary for Sarc patients.

There are lots of different degrees of immune disease, ranging from the most common Rheumatoid Arthritic and (some) Thyroiditis complaints (which total about 10% of the population). These folks will suffer a little from 1,25-D dysregulation. Then some folks suffer more - and so on until you get to the folks whose tissue forms into the granulomas of Sarcoidosis - they suffer the most , with the highest D-Ratios.

When I look at my data there is a continuum of immune disease throughout the community - A continuum of D-Ratios. Everybody who is suffering from Fibromyalgia or CFS needs to have their D-Ratio measured and changes in it tracked as the years go by...

..Trevor..
ps: it is almost impossible to communicate this with today's doctors - who like all illness sewn up so neatly into little categories - little boxes - if only they knew... Take a look at SARS - even that is a Th1 immune reaction - the SARS patients are dying from excess 1,25-D and cytokine release...

Re: strange sensations

Author: Jillian from North Dakota (---.westriv.com)
Date: 05-17-03 20:46

Stephanie,

I too have had facial, lip and limb numbness and tingling. It was very scarry.

I can say 'was' because by getting the vit. D out of my diet and watching my sun/bright light exposure by following the recommendations in the Patient Tutorials that Trever has generously provided for us, I no longer have those sypmtoms. (I'm still working on the rest of the protocol, getting a Doc to prescribe the ARBs and antibiotics...)

The best thing I've done for myself is to become an educated patient; to invest the time to read and re-read and re-read the info at this site until I know it. That's been a real challenge with my Sarc'd brain, but not impossible. I'm worth the investment--it means my life!

Although the learning has been a challenge, unquestionably my biggest challenge has been finding a Doc that cares about ME enough to also become educated and partner with me in doing this protocol.

'til later,
Jillian

Re: strange sensations

Author: Cindy Holland (---.rasserver.net)
Date: 05-18-03 13:43

Hello,
I just had a bout with what I thought was a sinus headache located behind my left eye. It was extremely painful, so I went to the emergency room where they did a CT scan and MRI, and found a sinus infection, I had had sinus surgery on that same area a few months earlier. The problem that I was most worried about was the left side of my nose and upper lip and gums were tingling and numb, as if I had been given a shot of novicane. The doctor then said that the neurologist that read the scan said that a sinus infection cannot cause the numbness and wanted to do a spinal tap to see if I had a bleed somewhere in the brain.
Needless to say, I chickened out of the spinal tap, opting to treat the sinus infection instead. The doctor prescribed , Avelox 400mg(once a day) and Maxifed 700/80 tab sa MCR (2 times a day). In about 6 days the numbness went away in my lip and gums. However, my ear still fills stopped up,(no pain), and my left temple is slightly swollen.

I guess my question is, could I just have a sinus infection that did cause the numbness by my sinuses being so swollen that they pressed on a nerve. I do see a lot of coincidence in the symptoms of Bellspalsy but how do they tell for sure and is the test to find out as painful as a spinal tap.
What other problems go along with the bellspalsy, in the future. Is this a fatal disease?

What should I do, now that the pain and numbness are all gone?

Thank you in advance for your answer.

Sincerely,
Cindy

Re: strange sensations

Author: Meg (---.188.232.59.euc.wi.charter.com)
Date: 05-18-03 17:00

Cindy,

Bell's Palsy is a condition, usually temporary, in which the muscles of one side of the face become paralyzed because of a disorder of the nerve that controls them. Because of its tendency to disappear untreated, many doctors seem to take it lightly. Often, the symptoms of Bell's Palsy begin to resolve within a couple of weeks. But if they don't, the disfiguring paralysis is likely to become permanent.

The cause is usually hard to identify. But, since a middle ear infection sometimes seems to bring on this condition, it would seem logical that your sinus infection may have been the cause of your symptoms.

It has been my experience that neurologists love to have the data that a spinal tap provides. I, like you, considered it far too invasive and declined because the situation didn't seem to warrant such an invasive procedure.

A far simpler and safer procedure would have been to have a blood draw to test the levels of 25-D and 1,25-D in your blood. We know that high levels of 1,25-D can produce the symptoms you describe and it is imperative, if this is the case, that those levels be brought down quickly to avoid permanent nerve damage.

Sinus complaints are very common among sarcoidosis sufferers and you can read quite a few messages about it on this site. Putting your sarcoidosis into remission may be the best way to help your sinus condition.

There are also other messages about Bell's Palsy and you can find them by using the search feature at the top of each page. Type in the key word/s and then change the setting to 'all dates' before you click search.

I'm glad your story had a happy ending. Please let us know how you are getting along and don't hesitate to ask if anything else puzzles you.

Best regards,

Meg

What should you do now? Well, since you are reading this board, I presume that you have a diagnosis of sarcoidosis. Have you ever had your levels of D-metabolites tested? This is a vital first step in your recovery. You can also avoid Vitamin D in all forms to try and reduce your level of 25-D. This alone may relieve some of your symptoms.

Re: strange sensations

Author: Stacie (---.proxy.aol.com)
Date: 05-20-03 14:10

I was diagnosed last year in April through a lymph node biopsy. I get horrible tingling in my fingers and toes. I have had twitching in my eyes for over a year now and all my drs shrug it off. I have had mri's of my brain which are normal, emg's normal, so they just say neuropathy or that I am hyperventalating....hyperventalating??...gimme a break!!!....my immune system is shot! I have mono for the second time in my life. I am on plaquenil and colchicine along with topomax, welbutrin, and clonopin, but now I am going to see someone else b/c I am getting sick all the time and I think the sarcoid needs to be treated more aggressively. I have little to no lung involvement. Its much more immune system and the twitching, loss of memory, difficulty finding words at times...anyone else relate?....anyone on methotextrate?..if so, what are the side effects?..thank you....

Re: strange sensations

Author: mona (---.rasserver.net)
Date: 05-20-03 18:17

Hi Stacie,
Some of your problems may be related to the topamax and klonopin. One of the main side effects of topamax is losing your train of thought. I was on it for about two days, after which when I couldn't remeber my name. I stopped immediately. I'd be in the middle of a sentence and forget what I was talking about. As soon as you stop taking that med, that side effect should stop. Klonopin is a very dangerous drug as far as being addictive. You can't just stop taking it. You have to SLOWLy wean yourself off, with the help of a doctor or you will have a lot of "anxiety attacks." Go to www.google.com and type in "klonopin+withdrawal" You will be surprised at the amount of sites you will find.

Have you read Trevor's suggestions? Start with these and you probably will not need the methotrexate. Best wishes, mona

Re: strange sensations

Author: Meg (---.188.232.59.euc.wi.charter.com)
Date: 05-20-03 20:06

Hi Stacie,

Welcome to SarcInfo. All your strange sensations could be attributed to symptoms of hypervitaminosis-D, a condition common to sarcoidosis. You can read a list of its symptoms on this thread

IMO, your doctor has been Treating Symptoms and Missing Disease as is illustrated so tragically in this article.

Klonopin (clonazepam) and Topamax (topiramate) are anticonvulsants. Since you did not report a seizure disorder I suspect they have been prescribed 'off-label' to treat your mysterious neurological symptoms. Plaquenil, an antimalarial, is thought to have some unknown antiinflammatory powers in sarcoidosis. We know that it is only slightly effective at killing the Cell Wall Deficient bacteria in your body. Colchicine, is used to treat gout, a common cause of podagra (pain in the great toe). If you do not have high levels of uric acid in your blood, it is unlikely that you have gout. But podagra can be caused by sarcoidosis. The wellbutrin is an antidepressant and smoking deterrant. High levels of 1,25-D can upset the delicate balance of hormones in your brain. Low levels of serotonin (a brain chemical) is a common cause of depression.

So you can see that your doctor has simply been treating your symptoms (with the exception of Placquinil which isn't very effective). He needs to understand that the etiology of sarcoidosis is mycoplasma bacteria and learn about the biochemistry of the powerful secosteroid hormone 1,25-D that the macrophages of sarc inflammation produce to excess. Only when you get your 1,25-D under control and eliminate the triggering bacteria will you be treating your disease and not just its symptoms.

I hope you will continue to read the vast amount of information on this site. Especially important are the patient tutorials and the papers for physicians at the top of the page. Read the starred threads and the links to other papers at the bottom of the page. Use the search engine to look up methotrexate and you will find lots of information on this dangerous, ineffective drug.

Don't hesitate to ask questions about anything you don't understand. For inspiration read the Success Stories thread. Lots of folks are getting better and you can too.

Take care,

Meg

Re: strange sensations/memory

Author: Vie (---.proxy.aol.com)
Date: 07-16-04 22:43

I also have the tingling in my fingers,arms and toes..But not always in the same place at the same time. I also have problems with memory,difficulties with finding words at times. I was diagonosed with sarcoidosis five years ago in my lungs. I had a presistent cough that would not go away and I was always tired. The mass on my lungs required me to take prednisone since inception. I started with 40mm, 10mm, 5mm and presently Iam taking 5mm every other day for the past two years. I stoped taking the prednisone for a period of about three months. But all symptoms returned.The coughing . stiff muscles and being tired all the time. So it was back to prednisone again. I have virtually no breathing problems. The tingling , memory and medication I would appreciate suggections. Iwas looking for information on the internet and I found you . It is so good to have a place to share. Thanks for sharing. Hope to hear from each one of you soon.

Re: strange sensations/memory

Author: Pippit (---.asm.bellsouth.net)
Date: 07-17-04 02:50

Vie,

Welcome to Sarcinfo. Please read all the papers and tutorials listed at the top of the page and take them to your doctor. Your Sarcoidosis was only suppressed while on the Prednisone, but you have come to the right place. This protocol can help you truly put your disease into remission. It's not a quick fix, but it will be treating the root cause; bacteria.

All of these cognitive problems you report are quite common in Sarcoidosis. It is important that you read everything you can at this site and then follow the protocol exactly.

You have taken the first step to getting better.

Let us know if you have any questions after you have read alot of the material.

Pippit

Re: strange sensations

Author: Mark (---.ok.ok.cox.net)
Date: 08-21-04 11:21

This is all very strange to me. I was diagnosed with Sarcoid about a yeear and a half ago. I had had a dry cough for about a year and never thought much about it. During a doctor's visit, I mentioned the cough and he x-rayed my chest, followed by biopsy whcih confirmed the diagnosis. I have had what seems to be typical shortness of breath and wheezing that is associated with sarcoid, and this continues. My last x-rays showed little change - no better - not notably worse. However, in the past month or so I have been experiencing tingling in my fingers (both hands) and all fingers, with some fingers rather painful. I also am feeling similar sensations in my toes. When I first saw my doctor when only a couple of fingers were involved, he threw out the possibility of Carpal Tunnel Syndrome. I am not convinced, however even if it is CTS, could that be caused by the Sarc?

I have put off going back to the doctor - wanting to wait until I go and see my pulmonologist again in another six weeks. The problem is I am getting a bit concerned. I feel stupid talking about all this, because it is something you can't see, but to me, it is unfortunately very real.
I am very curious about what others have experienced with similar symptoms. Is it the sarcoid or is it something else?

M

Re: strange sensations

Author: Meg (---.117.101.148.euc.wi.charter.com)
Date: 08-21-04 12:02

Hi Mark,

Welcome to SarcInfo. Regarding the tingling in your hands and toes, my money is on sarcoidosis. This is a farly common symptom. It is often due to high levels of the hormone dihydroxyvitamin 1,25-D but can also be caused by sarcoidosis inflammation in the peripheral nerves. I have experienced this also but it is a rare occurance now that I have been on the Marshall Protocol.

Sarcoidosis is a systemic disease. That means that by the time it is diagnosed by chest xray, you can count on it being in other parts of your body too, sometimes misdiagnosed as other diseases. The beauty of the MP is that it treats the cause of the disease, bacteria, and by doing that eventually all the symptoms are resolved.

You will need to educate yourself about sarcoidosis and the MP with the information on this site and marshallprotocol.com. This is cutting edge medicine and your pulmonologist may not yet be aware of it. You can take him the papers for physicians (at the top of this page) and encourage him to call Trevor. (his number is on those papers)

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links, starred threads or by doing a site search.

Meg

Re: strange sensations

Author: Ellene (---.17.triton.net)
Date: 08-30-04 21:31

I have many of the "strange sensations" spoken of here. And the sweating, sleep problems, joint pain, eye problems, etc, etc, etc ad nauseum.

But does anyone else seem to catch every "bug" you are exposed to? I do something for a few hours, get overtired, and suddenly I have a cold. Or some other bug. And if I am around anyone who ends up sick - I get it also.

Is this just me?

Re: strange sensations

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 08-30-04 22:05

Ellene,

Have you been diagnosed with sarcoidosis? Sarcoidosis symptoms can feel exactly like a flu that never goes away for very long - complete with muscle and joint achiness, abdominal pain, fever, chills, cough and a stuffy head. The symptoms may get better, then return upon exertion.

I used to think that I had a lingering case of the flu every winter, although I didn't have a good explanation for the same symptoms the rest of the year. When I was finally diagnosed with pulmonary sarcoidosis, I had attributed my symptoms to a "bad case of the flu" for months.

Belinda

Re: strange sensations

Author: Ellene (---.17.triton.net)
Date: 08-30-04 22:14

Hi Belinda,

Yes, I was diagnosed with Pulmonary Sarc. Now it is making itself known elsewhere.

I never thought of the symptoms being the Sarc itself! I just assumed I was "catching" things. You are describing exactly how I feel when I think I have "caught a bug"!

Thank you!

Re: strange sensations

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 08-31-04 00:04

Ellene,

Sarcoidosis patients tend to be influenced by the literature describing the disease as a "lung disease" and overlook the symptoms of this systemic disease. The National Heart, Lung and Blood Institute says that the general symptoms of sarcoidosis are uneasiness, "feeling sick" (malaise), tiredness, fatigue, weakness, loss of appetite or weight, fever, or sweating at night during sleep.

Additional symptoms common in sarcoidosis may be (though this is not all of the possible symptoms):
- enlarged lymph nodes - most often those of the neck, but also may be in those under the chin, in the arm pit, or in the groin,
- skin rashes -painful hot red bumps on the legs or arms, or small brownish and painless bumps on the arms, legs and/or back
- burning, itching, tearing, pain in the eyes
- red eye
- sensitivity to light
- dry eyes
- seeing black spots (called floaters)
- blurred vision
- shortness of breath
- wheeze
- cough
- chest pain
- irregular heart beat
- joint stiffness, swelling - most commonly in the ankles, feet and hands.

Belinda

Re: strange sensations

Author: Kas (---.cpe.net.cable.r)
Date: 08-31-04 05:45

I took 25mg of mino last night, after being off it for a week to recover from a 10 day course of Ceftin, and about an hour after taking it, I sat down and felt pain in my behind. A deep , raw nerve kind of pain and upon feeling the area, I noticed it was slightly raised, so I looked in the mirror and saw two large, red lesions. They look like insect bites, but clearly are not. I developed the same 'raw nerve' pain in the upper right hand side of my ribs, but there is nothing to see there and it is not as bad at that location.

Could this be a herx or something else, which just occured out of the blue? Is there cream I can use to alleviate the discomfort and would it be OK to use a small amount of cortisone cream? I feel OK otherwise, just tired from lack of sleep due to the pain every time I turned in bed.

Re: strange sensations

Author: Meg (---.117.101.148.euc.wi.charter.com)
Date: 08-31-04 17:27

Kas,

The rash and pain could be a Herxheimer reaction. These symptoms are common in sarcoidosis. The timing with your minocycline is the evidence. If the pain is intolerable you could cortisone cream sparingly.

Herxheimer symptoms can be ones you've not experienced before as the antibioitic ferrets out the bugs that the immune system could not deal with on its own.

Meg

Re: strange sensations

Author: Kas (---.cpe.net.cable.r)
Date: 09-01-04 07:07

Thanks, Meg.

My doc thought it could be shingles, and to wait and see if more lesions appear over the next 72 hours, but so far, nothing more. It could also be a spider bite, if not herx,

Should I have my mino tonight, or hold off until the 72 hours has passed ( Thurs night) and then resume on Friday, or just go ahead as usual?

Re: strange sensations

Author: Kas (---.cpe.net.cable.r)
Date: 09-01-04 07:28

PS. Are pains in the hands ( like arthritis) also a herx?

Re: strange sensations

Author: Caroline (---.dsl.stlsmo.swbell.net)
Date: 09-01-04 07:48

Kas,
Those pains my very well be. You will know for certain when you experience this pain only when herxing. An exaserbation of any of your sarc symptoms may present during herx. Personally, I had extremely severe pain in my hand and hip. As I progressed in the MP, this pain became less and less until finally it is but a bad memory.
Caroline

Re: strange sensations

Author: Meg (---.117.101.148.euc.wi.charter.com)
Date: 09-01-04 15:43

Kas,

Whether or not you take the next dose of minocycline depends on the Herxheimer reactions you are able to tolerate. And I do think that the symptoms you mentioned are Herx reactions. If you want to verify that, stop the mino to see if the symptoms go away. Then take mino to see if they come back. Remember that if they are Herx reactions, the symptoms will resolve when the bacteria are killed. It isn't always easy but it's the price we pay for recovery.

Hang in there,

Meg

Re: strange sensations

Author: Lottie (---.proxy.aol.com)
Date: 09-01-04 16:22

Kas,

When I was weaning off of the Prednisone, (I was on Benicar) a lesion like you described appeared on my left thigh. At first I wasn't sure what it was, and thought it looked like a bug bite. As it progressed, it matched some of the pictures of skin sarcoid.

Pain in my hands, like arthritis have appeared off and on since I stopped the Prednisone. I remember having "arthritic-like" pain when I was around thirty, and then it seemed to ease up. My grandmother had Rheumatoid Arthritis, so I thought I was developing that. But, I was in the sun a lot then, taking care of horses. Being out in the sun a lot probably stopped the bugs being killed, and reduced the toxins.

I also noticed ridges in my fingernails about two weeks ago. I've had that before too. Strange, how all these things keep showing up. I think my immune system has been able to do some of it's "magic" with the Benicar, and giving me some herx. I imagine that yours is herx as well.

I think I'll be going REAL slow adding the antibiotic!

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

Re: strange sensations

Author: Kas (---.cpe.net.cable.r)
Date: 09-01-04 18:46

Thanks everyone. My hand is so painful and swollen that I can hardly type. The butt lesions are nothing in comparison and they do seem a bit better today and no more have appeared.

I will miss tonight's mino and see how I am tomorrow and Friday.

I appreciate all of your input here.
I

Re: strange sensations

Author: Lottie (---.proxy.aol.com)
Date: 09-01-04 18:51

Awwwww, Kas,

I'm sorry you hurt so bad.

I think that's a good idea to wait and see how it goes. You may also want to take a lower dose the next time.

I'll be thinking about you...

aloha! Lottie

Re: strange sensations

Author: Ellene (---.55.triton.net)
Date: 09-01-04 21:14

I have also noticed ridges in my fingernails, Lottie. I am trying to find out if they could be Sarc. Two of my DRS are stumped.

Re: strange sensations

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 09-02-04 11:25

Kas,

If it reassures you any, I had lots of "strange" sensations as I moved through my Herxheimer responses. I noted that I paid lots more attention to the Herxheimer reactions than I did to the myriad of symptoms I noticed while suffering from sarcoidosis alone, due to the fact that I was relieved of constant pain, fatigue and brain fog - all of which allowed me to be more aware.

I had lots of transient itching and "nerve pain" on one side of my body. When I began the MP, I had little sensation in my skin on the right side of my body. Lack of sensation meant I couldn't feel clothing on my right side, my gait was affected, and ability to grasp with my right hand reduced. All these resolved as I worked through those Herxheimers and strange sensations.

Minocycline cleared the rash I'd had a cross my buttocks (intermittently) for years, but it took a full four months, and then I had a recurrance when I added Zithromax, which also cleared. My rash looked like extensive acne - lots of small red bumps that ached. One other thing that happened to me - which sounds like your large bumps: I got several mosquito bites on my legs while I was Herxing, and those turned into raised, palpable knots the size of half a marble. I just considered that Herxing, and my doctors saw them as that, too. It made sense to them that Herxing would affect inflammed areas like insect bites. My mosquite bite knots were completely gone in two weeks.

I also experienced ridges lengthwise in my nails. I believed this was due to changes in my liver, as the liver is often affected in sarcoidosis. I also experienced transient pains in my liver due to Herxing around the same time.

Hang in there - it gets better! It's just surprising when we experience the Herxing and realize how much of our body has been affected by this disease.

Belinda

Re: strange sensations

Author: Kas (---.cpe.net.cable.r)
Date: 09-03-04 10:26

Thanks so much, Belinda and Lottie for all your support and reassurance.

I feel so much better today ( no Mino since Monday night), and although the butt lesions are still there, both are not as angry looking as they were earlier in the week, and although still painful, much improved. Best of all, is that my hand can now function again and is really tons better.

Tonight, I want to try going back onto the mino. Just wondering if I should try 12.5 mg or the 25mg and 500mg quercetin? What do you feel?

I really am taking baby steps, but I at least feel that I am doing my best to get rid of some bacteria. I sincerely hope that I can start the Benicar again without my previous probelms, in a few months.

Re: strange sensations

Author: Lottie (---.proxy.aol.com)
Date: 09-03-04 18:45

Kas,

IMO, considering your recent experience, I think that you would probably be better off with the 12.5 mg dose for at least a couple of doses. You're still going to kill bugs, without creating another painful session. Then you can evaluate how you do at that level.

Baby steps are fine... they still keep you moving forward!

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

Re: strange sensations

Author: lynne guimond (---.citenet.net)
Date: 09-04-04 11:48

Hi Ellen;
Just read about your finger nail problem.I have scleroderma and my nails are very ridged,iften splitting right up to the cuticle.The doctor says it is due to poor circulation as some of the cells that make the nails are inhibited from doing so by lack of oxygenated blood. Lynne

Re: strange sensations

Author: DJ (---.montanavision.com)
Date: 09-04-04 17:31

Here is another angle on the ridged nails.

I have had similar nail ridging for several years before my sarc diagnosis, and my son developed the condition about 4 years ago. The dermatologist called it psoriatic nails - a form of psoriasis - an immune disease whose biochemistry has several similarities to sarc. (She did eliminate the possiblity of mold or fungal infection first.)

When my sarc flared, the nail ridging and pitting increased.

I have no idea if this was a coincidental occurrance, a complication induced by liver dysfunction as Belinda mentioned, or a manifestion of sarc. I suspect it is yet another immune imbalance induced by occult mycoplasm infection, which I am treating with the MP.

PS My son was treated with a topical application of calcipotriene, a vitamin D analogue. It works by binding to the vitamin D receptors in different cells, including keratinocytes and T-cells, reducing proliferation and modulating the immune response. According to the manufacturer, the artificial compound does not have same effect as native vitamin D on the metabolism. My son's condition cleared up with 6 months of treatment with no evident side effects, but I have no idea how a sarc patient would respond to it.

-DJ-

Re: strange sensations

Author: Lottie (---.proxy.aol.com)
Date: 09-04-04 17:53

Since Ellene had asked again about the ridged nails on another thread, I had answered her there, I thought I would repost my response to her here for her and others.

Ellene,

I agree with Meg, that your African-American heritage, has nothing to do with the ridging of your fingernails. As far as I know, I am primarily of Scotch, Irish, English and German heritage, and as I've said before, I also have Sarcoidosis and the ridging.

I looked around the web and found this statement...

"Sometimes, lengthwise (longitudinal) ridges will develop in the fingernails and toenails. This can be a normal aging change. However, some nail changes can be caused by infections, nutritional problems, trauma, and other problems."

I also found reference to iron deficiency as being a possible cause. Since I've been reducing and now am off the Prednisone, my hemoglobin, hematacrit, and numbers of red blood cells is decreasing as it was doing when I first started having problems and was finally diagnosed with Sarcoidosis.

When there was a question about anemia due to reduced iron, Trevor mentioned that iron can also fuel the inflammation of Sarcoid. Perhaps that is what the problem is for us, our iron is being "burned" by the Sarcoid inflammation going on in our bodies. However, supplementing will also fuel the inflammation, so taking iron wouldn't be much help, or a good idea.

I'm not worried about the ridging. I figure it's just another thing caused by Sarcoid... and something that will go away as I procede along the Marshall Protocol, and do away with the inflammation!

I don't think that you should attempt any other treatment at this point, but try to get your doctor on board with the Marshall Protocol. Best wishes to you.

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury

Re: strange sensations

Author: Lucy (---.nwrk.east.verizon.net)
Date: 09-20-04 19:53

I am new the the boards and this is my first posting.

I have had strange sensations and numbness in the center of my back for months. it comes and goes, mostly in the am when I wake up. the pain in my hand and fingers comes and goes. I had testing done and have alittle carpo-tunnel but for the most part I am ok.

I just want to truly thank everyone for their input on the boards cause i have had some of the same symptoms and it is very scary when you don't know what's going on. the past week I have been having light headaches, the past few months my right eyes has been twitching uncontrolably and my right side of my face by my eye is sore, not painful, just sore. I do thank everyone again for posting their symptoms to let me know that I am not alone and sarc does cause many, many different symptoms in people.

Thank you all again
Lucy

Re: strange sensations

Author: Caroline (---.dsl.stlsmo.swbell.net)
Date: 09-20-04 20:53

Hi Lucy,

Welcome to SarcInfo. A simple bloodtest of your D metabolites will tell you and your physician wheter you have an inflammtory Th1 disease. Meanwhile, follow the vitamin D protection of your skin and monitoring your diet to completely rid it of D, either by supplementation or enrichment. Eggs, fish, cereal to name but a few, will worsen your symptoms.

Read all of the Patient Tutorials found at the top of the page and the ** starred theads also contain vital informaiton.

Have you had an eye exam lately? Increased eye pressue may cause the facial discomfort you describe. Many with sarcoidosis have iritis/uveitis which may raise eye pressure to an undesirable level.

Best Wishes, Caroline

Re: strange sensations

Author: Tammy (---.tukw.qwest.net)
Date: 09-23-04 20:57

Years ago I went to a neurologist for numbing to my right side of my face and trouble swallowing on occasion. The doc. thought I might has MS and ran a brain scan with came back with, well can't tell come back if it does it again. I never did. Last year I developed horrible pain in my right arm and hand as well as #8 on the pain scale of pain from my groin to the out side of my right knee. Again all the test no answers. I went back in for the about pain to the same doc. from the first time and also explained I was dropping things right and left and couldn't alway think streight or come up with the right words, at the right time. Again, no answers but this time he commented that I might have mental problems not physical, needless to say I didn't tell him another doctor who did believe me was taking a CAT scan of my neck and that he did fi