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 The material here provides useful background, but much of it is now out-of-date.

** 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 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

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

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Are these symptoms the sarcoidosis or the drugs?

Author: Debbie (---.rasserver.net)
Date: 04-28-02 17:49

Several months ago I was diagnosed with stage 2 sarcoidosis (lungs) after coughing 3-4 months. The doctor rec. prednisone but I was dead set against it for several reasons (blood sugar changes, probable weight gain, mood swings, etc.). I found a sarcoidosis specialist and I've been on methotraxate.
Along the way I've had other symptoms -
inflamed vocal cords (a small ulcer on one as well)
incontinence
intense itching on my legs
supposedly the vocal cord issue (I also lost my voice entirely for a while) and the incontinence were unrelated to sarcoidosis. Notice I said supposedly. I don't believe that they are unrelated. I'd like to hear from some of you whether you've ever had these symptoms (I'm relatively young - 45). Thank goodness the incontinence is gone, and I've gotten my voice back as well. I do have flare-ups though.
I'm also very interested in the hypotheses linking the environment to the getting of the disease. My office is in the basement of a school, and I think the ventilation is very bad there.
Looking forward to hearing from some of you.

Re: are these related to sarcoid?

Author: Admin (207.175.253.---)
Date: 04-28-02 21:43

Debbie,
Some quick thoughts. I came up with the following reports on methotrexate side-effects. Whether they apply to your suffering is something only you and your doctors could determine.

Rheumatoid nodules of the larynx
Methotrexate-induced development of a rheumatoid nodule in the larynx
Drug-induced oral ulcerations
Cutaneous ulceration as a sign of methotrexate toxicity
Cecal (intestinal) ulceration due to methotrexate
Methotrexate + Dexamethasone caused incontinence side effect

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. I am sure some other patients will post with information about how they beat their paresthetic pain.

Sarcoidosis makes you very sensitive to environmental changes that probably will do you little objective harm. I used to be paranoid that traces of certain odors were making me ill, when in fact all those sensory hypersensitivities went away when I was able to get my brain chemistry back to normal. It wasn't the odor that was the problem, it was that I was perceiving the odor as a problem because something else (the sarc) was upsetting my olefactory system (hmm... that sounds clear as mud

Air cleaners that use electronic filters, such as Sharper Image's "Ionic Breeze" seem to be best at clearing allergens from impure air.

Hope this helps,
..Trevor..

Re: Are these symptoms related to sarcoidosis?

Author: Laurie B. (---.tnt2.saginaw.mi.da.uu.net)
Date: 05-04-02 09:08

I was diagnosed in 1990, and a few years ago developed a severe hoarseness, the ent was going to do a biopsy but was not able to visualize my vocal cord. since then have had surgery and they could not intubate me because they couldn't visualize either of my vocal cords. Said that I would need fiberoptic intubation for any future surgeries. My hoarseness lasted for a couple of months and returned a few times but now seems resolved.

Re: Are these symptoms related to sarcoidosis?

Author: Cher (144.138.225.---)
Date: 05-05-02 12:56

Hi Debbie,
I have experienced the extreme itching, not just on my legs but also on my scalp ... so much so that I was continually checking for Lice & or dandruff but neither of them were causes.
As to the voice loss. I lose my voice often. I also send friends, family & workmates into states of major panic because many people believe I am distressed or crying because of the hoarseness of my voice. I have not been told of any ulceration or simialr on my vocal chords but I definitely have a problem in that area.
With the Neuro Sarc I also get what is referred to as Speech Dysphasia where i can't remember how to talk or my brain doesn't send the right message to my voice box. So it can take me several minutes to get out a single word (& usually by that time I've forgotten what I was going to say anyway lol).
Cheers Everyone & Stay Positive as usual..
Cher

Re: Are these symptoms related to sarcoidosis?

Author: elaine emmi (---.client.attbi.com)
Date: 05-05-02 21:36

Hi Cher,

A couple of years before my sarc diagnosis, I experienced what seemed to be severe dandruff and itching. It was so strange. I also seemed to have mild acne. Then it went away. And a few years before that I would get hives if I was in the sun too long. Still have problems with that.

Strange disease we've got!

Elaine

Re: Are these symptoms related to sarcoidosis?

Author: shelagh (---.proxy.aol.com)
Date: 05-10-02 11:15

ok over the past eight years i have had a variety of odd symptoms, none of which appear to be related to one another. can you tell me whether they are related to sarcoid?

severe reaction to unknown agent - angioneurotic oedema
severe skin rashes - no breathing involvement
itching legs, scalp, neck and back (VERY irritating because it;s impossible to scratch!
joint pain - shoulder, elbows, knees and ankles
swollen legs feet and ankles - been unable to wear shoes for almost six months
'nodules' on fingers
visual problems - been treated for choroidoretinitis
breathin problems (definitely sarcoid - diagnosed thro' bronchoscopy, cat scan, xray etc)
pins and needles in arm and shoulder

are all these problems likey to be caused by sarcoid - and if not - what is the matter with e?

Re: Are these symptoms related to sarcoidosis?

Author: Caroline McGuirl (---.proxy.aol.com)
Date: 05-10-02 13:37

Dear Debbie:
I too have had the "itchies" on and off with the Sarcoidosis. While on Prednisone the itchies disappear. I don't see any signs of swellings or hive-like eruptions with the itchies....I have been taking Allegra daily and Atarax when the itch becomes unbearable and I can't sleep.
I had Shingles once, Athlete's foot and when on a drug Neurotinin for deep root pain...broke out in a total body rash with eruption-like bumps and that time it may have been the drug Neurotinin.
My voice has become raspy at times and I have lost it altogether at other times and this comes and goes.
The doctors treat the symptoms but don't have any answers as to why.
It is a most frustrating disease as there NO answers at all.
Sincerely,
Caroline

Re: Are these symptoms related to sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 05-10-02 14:42

Caroline, you have hit the nail on the head "the doctors treat the symptoms".

Unfortunately they can't treat the underlying disease because they don't fully understand it.

But there are answers, or at least, reasons. By sharing the knowledge that is posted on the Internet we can help them bridge that gap.

On this board you will find messages explaining why these symptoms go away with prednisone, and others pointing out that most of the common COX-2 and NSAID drugs don't work properly for sarc sufferers.

It is great to have another ex-health professional to help us pin this syndrome down and nail it.

Welcome to SarcInfo.com

..Trevor..

Re: Are these symptoms related to sarcoidosis?

Author: Cher (144.138.225.---)
Date: 05-11-02 10:10

Yep Shelagh,
It sounds all too common & familiar. we the sufferers seem to know more about our problems than any of the dr's. I have been told that all these symptoms are in my mind but I know for sure they are real & talking to other Sarcoholics I know they definitely are. So, let's hope the answers come our way sooner rather than later but in the meantime we have each other for support. As usual, Stay Positive
Cheers ... Cher

Re: Are these symptoms related to sarcoidosis?

Author: Jackie (---.svtv.com)
Date: 05-12-02 08:23

For about 4 months, I have had difficulty with singing. I am a Worship Leader in our Church Praise Band and have been so frustrated. I find I am losing my ability on the higher notes. There is an actual pain involved when I sing too long or high. My pulmonologist suggested I see an ear,nose and throat specialist which I have not yet done. He thought my inflammation might involve nerves next to the vocal cords. I have not, however, had any trouble speaking or actually losing my voice. Do you have reason to believe that your problem is sarc related?

Re: Are these symptoms related to sarcoidosis?

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 05-12-02 08:51

Jackie, two possibilities.
Firstly, if your 1,25 dihydroxyvitamin D3 is too high, then that seems to cause muscle tightness, and difficulty in swallowing. Any possibility that this might be the problem?

Additionally, if you are on medications, some of them can cause problems. Methotrexate, for instance, is well known for causing vocal polyps.

..Trevor..

Re: Are these symptoms related to sarcoidosis?

Author: arline (---.tm-dial1.harborside.com)
Date: 06-03-02 13:42

Shelagh,

I have had in the last 7-8 years all of the symptoms you describe. I was just diagnosed with fibromyalgia and sarcoidosis in Oct. 2001. It seems that both of the diseases have no real treatment, just treating the symptoms. I have been on high doses of aspirin since then, but now I am having some ear problems so I am off of that. I truly do not want to start the steroid route, but I don't know what to do with the continuous pain and itching problems and the skin eruptions which I have had on and off since 1984. I haven't been to the optometrist yet this year but hope I don't have any lesions. This stuff is so nasty the nodules or cysts or whatever are sooo painful.

arline

Re: are these related to sarcoid?

Author: Tim Murphy (---.indpnd01.mo.comcast.net)
Date: 06-08-02 13:20

Dear Admin:

Just heard about Sarcoidosis and found the sarcinfo site within the last few days; and after years of amateur medical research believe that I may be getting a name for a personal health condition.

Without going through the litany, I have been to a number of doctors over the last several years; the best diagnosis I could get - from a rheumatiologis - was an "unspecified inflammation." Not only were my blood work, etc. essentially normal, but I am in apparent good health, like to exercise and would seem to be generally fitter than most of my middle-aged male contemporaries.

As you no doubt have heard time and again, when tests look OK and you are discussing "sensations" rather than pain, the doctors don't seem interested. I am going to have to be more persistent, however, as I am now experiencing more numbness in left arm, and even some involuntary twitching in my left hand, particularly thumb.

My particular reason for writing is your reference in this post to "olfactory system" problems. The one "symptom" that I believe has caused more conviction on the docs part that I am nuts is, as I have tried to describe it, the "strange smells." I am not sure if your experience is the same as mine, but periodically I have what to me seem to be "internal" smells--they seldom are related to any actual smell in the immediate atmosphere. The smells are not always even unpleasant. I can only generally identify this situation with the kind of "ill" smell that you might have from heavy congestion from the worst colds or flus. But there is generally no congestion or other apparent source. Does this sound like something that could be related to Sarcoidosis? (Never experienced anything like this until it and other strange symptoms -sensations, constantly swollen glands, leg numbness - began about 1991. It is all that much more difficult to describe these feelings, smells, etc. when you have lived 40 years and have never experienced such things -- What are the words we are supposed to use?)

Thanks for your time, and good work.

TJ
Any input you can offer would be appreciated.

Re: Are these symptoms related to sarcoidosis?

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 06-08-02 15:07

Tim,
I am not quite sure exactly what smells you are referring to. Certainly there was a time, many years ago, when I was convinced that I was 'allergic' to smells, including petrol vapors and cigarette smoke.

In the latter case there was (and is) some real biological sensitivity, but nowhere near the level that I was imagining at the time. I thought I could correlate migraine attacks with cigarette sidestream. But by the mid-80's I had discovered the sunlight sensitivity, and then I realized that, since nobody smoked at my home, the only times I came into contact with smoke was when I was away from home, when I was getting a decent dose of that nasty sun stuff. It turned out to be the sun light causing the trouble, not the smells. Nevertheless, is this the type of 'olefactory' stimulation you mean? Odors that other people don't notice or worry about but which are strong and important to your senses?

..Trevor..
ps: Whenever you are told that blood work is "normal" ask for a copy of the raw lab results and start to look through the data yourself. Doctors are invariably seeking go/no-go guidance from the lab, and many labs allow a huge range of values to be called 'normal', even when they should be called "marginal". I guess its a bit like Wall Street telling you to "Buy". Maybe Doctors need to develop the language of Wall Street "Buy" "Strong Buy" "Hold" "Accumulate" rather than just looking for "normal"

Re: Are these symptoms related to sarcoidosis?

Author: Caroline (---.win.org)
Date: 06-08-02 21:32

TJ,
I have the strange smell sensation too! I can't believe someone has this. I haven't even thought of that being a symptom, but now I wonder. I usually have that feeling of an odor late evening or night. It's not bad though, just odd smelling. That is so strange to read this mentioned by anyone. Caroline

Re: Are these symptoms related to sarcoidosis?

Author: KaitlynK (---.proxy.aol.com)
Date: 06-09-02 04:27

Speaking of odors--I CAN'T SMELL ANYTHING ANYMORE. I've had sarcoidosis for 3 years and my sense of smell has deteriorated since then to the point where I can says it's pretty much gone. I can't be sure it didn't start to leave me PRIOR to the sarcoidosis onset. Whatever, the starting point, my hustand and I were walking among multitudinous lilac plants in bloom at the Royal Botanical Gardens in Ontario, Canada yesterday. I never smelled a one though he assured me they were perfumed to high heaven. I am 66 years old. My sarcoidosis symptoms never included any problems with my sinuses, throat or nose
KaitlynK

Re: Are these symptoms related to sarcoidosis?

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 06-09-02 17:47

Kaitlyn,
Loss of the sense of smell sounds more like a bad reaction to medication rather than a symptom of sarcoidosis. In the absence of severe nasal inflammation, which you don't have, I can't think of any mechanism whereby the sarc inflammation itself could cause a loss of your sense of smell. Have you been taking any unusual medications?

..Trevor..

Re: Are these symptoms related to sarcoidosis?

Author: Di (---.in-addr.btopenworld.com)
Date: 06-10-02 05:40

Kaitlyn,

I, too, have very little sense of smell, a situation which pre-dates my diagnosis with sarc. I also have problems with catarrh and phlegm, so I wake up each morning both short of breath from the sarc. and blocked up. Does anyone know if catarrh is a sarc. symptom? I know the phlegm is caused by my lung sarc.

Di

Re: Are these symptoms related to sarcoidosis?

Author: KaitlynK (---.proxy.aol.com)
Date: 06-10-02 11:54

Hi, Di:

I forget what the term "catarrh" refers to. I have a problem with "stuff" that seems to come up from my lungs when I'm going off prednisone. All of a sudden it's just there and keeps me from talking. This last time when I weaned off it started in right away but, unlike the time before, it only lasted for a few days and has disappeared. I never cough and am very seldom breathless. I feel very well and am almost off pred and praying my head off that it'll last.

Re: Are these symptoms related to sarcoidosis?

Author: Mary Hall (---.008.popsite.net)
Date: 06-10-02 23:20

Hi Di, I too have experienced strange smells and odors. In Jan.2001,I had some type of seizure during my sleep. It was confirmed by an EEG as being left temporal-parietal complex partial seizure. I continued to experience odd smells until I was put on Gabitril, an antiepileptic drug. The Dr. aren't sure if this is neurosarc. or what. I suspect it may be. What I was experiencing was an aura, or signs/symptoms preceding a seizure. Most people experience seizures during sleep and are not always of the grand-mal type. Talk to your Dr. about doing an EEG. Just a thought. I hope it helps. Sincerely, Mary

Re: Are these symptoms related to sarcoidosis?

Author: Di (---.in-addr.btopenworld.com)
Date: 06-11-02 06:28

Mary,

I have been referred to ENT, who are going to do a sinus CT scan, I'm not too hopeful that they will find anything, but who knows! It's not that I get strange odours, it's that I get none, or very little and suffer from constant stuffiness and the need to swallow stuff, which builds up at night and makes me choke. I don't think that I have nuro sarc. I really don't have any symptoms apart from a strange vision disturbance that seems to be migraine-related although I don't get a headache, and responds to paracetamol (UK Tylenol). I have been getting a numb cheek since I have been on pred. My doctor mentioned testing my sugar levels - yet another idea thrown into the melting pot. Has anyone else had this problem with pred?

Di

Re: Are these symptoms related to sarcoidosis?

Author: Admin (---.cu27.vnnyca.adelphia.net)
Date: 06-11-02 08:13

Mary,
Diabetes is frequently caused by long-term (>2 months) Prednisone.

Even people who are not ill were given prednisone and contracted Diabetes at about the same rate as ill patients.

This study said Prednisone users are likely to contract Steroid Diabetes Mellitus at rates greater than 1 in 6 after 3 months of treatment with 25 mg daily. The probability rises with increased dosage or increased period of usage.

I could give you even worse news, since Diabetes was my PhD thesis specialty, but I guess you probably don't want to know

..Trevor..

Re: Are these symptoms related to sarcoidosis?

Author: Caroline (---.win.org)
Date: 12-15-02 22:40

Hello,

I have been troubled with increasing numbness and painful tingling in the last two weeks of quitting MTX. First it was the soles of my feet and now the numbness is to my knees. As the numbness creeps up my legs the beginning area (soles) have gotten much worse. Now I can barely feel the cold floor under my feet. If I couldn't see my shoes, I wouldn't know they were on. It is becoming so much more difficult to walk, and I don't walk well to begin with.

Additionally, liquid in and urine output is very disproportionate.
I feel this too is an adverse reaction to MTX.

When I asked the prescribing doc, she had no answer. So, I searched on-line. I did find a MS site that says MTX toxicity may cause reduced amount of urine, tingling pain or numbness in hands or feet. BUT it doesn't specify what can be done or how long until symptoms abate.

I am attempting to find out if there is something I can do for myself, like folic acid supplements. I can't stand this, it is so painful to stand and then uncomfortable to sit or lay down. I called my neuro and he said to try neurontin for a week and call him back as this might help but that it will only treat symptoms.

Has anyone else who has taken methotrexate had this problem? If so, I pray it is not permanent. Or, are these symptoms an exacerbation of sarcoidosis? It is so easy to blame sarc with its various and changing problems. My gut feel is that it is MTX.

Thank you, Caroline

Re: Are these symptoms related to sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 12-16-02 05:13

Caroline,
Can you be precise about exactly when these problems occurred. Had you already started to taper your MTX dose when they came or were you just taking the MTX exactly as you had in the previous 5 months? There were no other drug changes?

How long is it since you had a complete set of blood tests run (to check kidney function)? Did any of your liver enzymes flag as being high on the last set of tests?

...Trevor..
ps: was it Doc that mentioned Folic Acid?

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Dave (---.vnnyca.adelphia.net)
Date: 12-16-02 08:31

I've been to a number of docs this year because of ongoing problems. My pulmonary doc suggested sarcoidosis because of enlarged lymph nodes and some "fuzziness" in my lungs. He's held off doing the scope into my lungs and just continues to watch. It's had me spooked all year though because all the docs I've seen just scratch their heads and wonder. I've been to the pulmonary doc, a neurologist (gave me a beta blocker says it's maybe anxeity), opthamologist and an oncologist.

It all started with a numbness and tingling feeling in my hands and legs.
After a few trips to my primary doc I went to the ER, all they saw was low potassium and game me some vitamins. They also noted very low WBC.

Then my primary doc did a chest xray because of "tightness" in my chest. They say the lymph nodes and sent me to the pulmonary doc.

It goes on and on with docs and tests but these are the basic symptoms:

Occaisional numb feeling in hands and legs.
Really weird feeling in head most days. Kinda like I'm in a fog.
Pulse often races, I feel my heard beat through my body.
Small clusters of white bumps on lips.
Enlarged lymph nodes in chest.
Some days I'm really tired... not every day.
Slight weight gain.

I'm just wondering... does this sound like Sarcoid? Are the docs moving in the right direction?

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Admin (---.vnnyca.adelphia.net)
Date: 12-16-02 08:38

Dave,
Welcome to SarcInfo.
You need to get your D-metabolites tested (click here) ASAP.

Then you will know the answer.

..Trevor..

Re: Are these symptoms the sarcoidosis or the drugs?

Author: David Nowell (---.prudential.com)
Date: 12-16-02 08:45

Thanks for the info. I know they did the ACE levels a few months back but I'll have to ask about the others when I go back in January.

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Caroline (---.win.org)
Date: 12-16-02 08:58

Hi Trevor,

I began MTX at a dose 10mg and over six months titrated to 20mg. December was to be the end of a six month trial. The first 20mg dose was December 2nd. About 24 to 48 hours later, I noticed the numbness of the soles of my feet. I generally have some numbness and tingling, so I ignored it, even though it was increased.

On December 8th., I took the second 20mg. dose. Overnight the numbness had crept to ankle heighth.

On December 9th., I had an appt. with the pulmo that prescribed MTX. I asked her about the numbness and tingling. She said MTX clears your body in 24 hours and switched gears to sending me to Johns Hopkins. I had previously brought her the abstract in which Dr. Moller took part.

The numbness is to my knees and seems to be stocking/glove numbness up the back of my thighs now. I'm panicking! This morning I called my pharmacist and she said 'severe neuropathy' may be a side effect of MTX but her information says this can be an adverse effect at doses of 30mg or higher. I didn't ask about urine in and out.

I had asked about folic acid because MTX is a folic acid antagonist. I "believe" while 'searching' I read that Dr. Moller always prescribes folic acid be taken by patients on MTX to reduce side effects. Well, that's how my pea brain works (8-)....not enough folic acid, just take some......

I do have my last Quest Lab report and am looking for it, I don't remember that anything was low.

I so hope this is not permanent it will drive me crazy. If this is from MTX, we need to get a warning out to other's who are unaware.

Thank you for any advice,
Sincerely, Caroline

Re: Are these symptoms related to sarcoidosis?

Author: Admin (---.vnnyca.adelphia.net)
Date: 12-16-02 09:25

Caroline,
Relax! ("always start by reassuring the patient")

Seriously, though, neuropathy is generally reversible, although it might take a while for the nerves, etc, to recover and/or heal.

Sure sounds as though it was the change to a higher dose of MTX.
I just don't understand why they let that drug be used by docs other than oncologists, who presumably get to see it more often. Your Doc obviously either didn't know what to expect in the way of side effects, or she was trying to hide the truth from you. Either way is not good.

I would doubt that MTX 'clears your system' so rapidly. Why give it once a week if its action is only for a few hours? RxList says "Small amounts of methotrexate polyglutamates may remain in tissues for extended periods", but that really doesn't throw much light on the situation, either

RxList does say that the drug is metabolized by "intestinal flora", so it probably wouldn't hurt to start using that for a week or so. Try and get a brand that is kept in cold storage at the Health Food store, not one in tablet form.

Sorry to hear about this, your bloodwork looked pretty good. Low D-Ratio. Except for a high 25-D (was this maybe coming from the MTX?) you were reasonably OK when Doc started out with the MTX.
Well, maybe you should call her nurse and ask to come in for another set of D-metabolite, lipid, and hepatic, bloodwork ASAP...

..Trevor..

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Caroline (---.win.org)
Date: 12-16-02 21:30

Trevor,

I'm trying to relax...(but inside I am ready to scream from frustration). I do take comfort in your words that the neuropathy will reverse. Maybe by the time coffee is ready tomorrow morning? ?

I did find my lab results drawn earlier this month. Everything is within normal range. In Novemer the globulin ratio was off but is also normal this month. Is there anything in particular that I should look for that is borderline high or low?

I see my internist Thursday. My husband took the manuscripts, etc. to him for review, at his request. I am in great expectation of this office visit. I so hope I will receive his support of your protocol. If so, I will be getting the D's checked at Quest Thursday and will also discuss the new neuropathy i am experiencing. I called the prescribing pulmonary to discuss this today and did not receive a return call.

Trevor, thank you for your encouaging words and help-Caroline

Re: Are these symptoms related to sarcoidosis?

Author: Iris (---.proxy.aol.com)
Date: 12-28-02 16:57

Dear Cher,

I thought I was going crazy. I was diagnoised with sarcoidosis about 6 months ago. I have been lucky enough to have it affect my eyes. I now see a neuro-opthamalogist about twice a month, and my internist 2x a month, since I now have diabetes because of the steroids. To make matters worst, it has now affected my skin. I itch all over. When I read what you wrote about your scalp, it was like a sigh of relief. I often check for lice. What do you do to alleviate the itching of the scalp? I'm open to any and all suggestions. I'm also trying to find a specialist in the Philadelphia area. Any suggestions?

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Admin (---.vnnyca.adelphia.net)
Date: 12-28-02 17:32

Iris,
Welcome to SarcInfo, and Happy New Year!

I used to have uncomfortable skin. I would comb my hair and feel the hair parting. One day I woke up and realized I couldn't feel my hair any more.

After talking this over with my wife I realized that hair normally shouldn't feel uncomfortable. Skin shouldn't feel itchy. despite what I had experienced all my adult life. You too should get back to this non-itchy condition when you eventually get your 1,25-D hormone down to a reasonable level (20-25 pg/ml).

You can find out how to do this by working through the messages and information on this BBS.

..Trevor..
ps: did you manage to control your Diabetes with needing insulin?

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Gladys Herndon (---.cybertrails.com)
Date: 05-17-04 18:57

Dear Sir/Madam,
I have SLE and have had lupus for approximately thirty years. I am a females, 53 years of age.
About two years ago, I developed nodules on my right fingers, to the point, not only are they painful, but a nuisance, since I am an organist, and use my fingers a lot. My physicans have told me that they are lupus-related, and they seem to be starting in my left fingers now as well. Are there any meds or surgeries that can be done to cure these and restore my fingers to the way they used to be? I am looking into bioidentical hormones as well to help me with menopausal symptoms. I have been on Plaquenil before, but frankly, don't want to start any steroids, or other lupus drugs if at all possible. I like the natural approach. I would appreciate you contacting me, and letting me know possibly of doctors that specialize in this field. Thank you.
Sincerely,
Gladys Herndon

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Meg (---.187.82.79.eau.wi.charter.com)
Date: 05-18-04 19:51

Hi Gladys,

Welcome to SarcInfo. You are wise to have avoided steroids. I, too, am a fan of bio-identical hormones to manage the symptoms of menopause. Plaquenil is a weak antimicrobial with weak anti-inflammatory properties. It is not very effective for the autoimmune diseases.

Systemic lupus erythematosus (SLE) is a Th1 inflammatory disease. It won't respond to treatment with 'natural' products but it should respond to treatment with the Marshall Protocol. Your own doctor is the best person to approach first about helping you try this safe treatment plan. If he says no, I can send you a list of doctors who might be supportive.

Meg

Re: Are these symptoms the sarcoidosis or the drugs?

Author: J.B. (---.ipt.aol.com)
Date: 07-25-04 15:53

I have sarcoid of the lungs. I went to the doctor because my voice was hoarse and the hoarseness lasted for months. Eventually I was diagnosed with a paralized vocal cord. It has since cleared up, but I don't know if it had anything to do with sarcoidosis.

Re: Are these symptoms the sarcoidosis or the drugs?

Author: J.B. (---.ipt.aol.com)
Date: 07-25-04 15:58

I am now taking MTX and my hair is falling out terribly. I think it is because of the MTX. I was wondering if there was anything I could do to stop my hair from falling out while taking MTX. Example: If I drink plenty of water would it lessen the side effects.

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Belinda (---.dsl.rcsntx.swbell.net)
Date: 07-25-04 18:07

J.B.

It is quite possible for hoarseness and vocal cord problems can be attributed to sarcoidosis. Please read this case report for a detailed example: Systemic sarcoidosis presenting with alopecia of the scalp.

Notice that alopecia, hair loss, can be caused by sarcoidosis, but hair loss is also one of the side effects of methotrexate. This article says regarding methotrexate, "The most common side effects are nausea, vomiting, upset stomach, loss of appetite, and irritation or ulcers of the mouth. Hair loss, rash, and/or diarrhea may also develop. Children or elderly adults may be more sensitive to methotrexate. Side effects that are more rare include a temporary lowering of the number of white blood cells in your blood, increasing the chance of infection, a lowering of the number of platelets, affecting proper blood clotting, severe lung inflammation and liver damage."

Please keep reading and thinking. There is lots of information on this site. The best way to efficiently use the information here is by reading the patient tutorial articles at the top of the page and by searching for the keywords of interest to you to get to posts containing those topics.

Best wishes,
Belinda

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date: 07-25-04 19:40

J.B.,

Why are you taking MTX when you have all the information you requested about the Marshall Protocol and a list of doctors who may be supportive?

As I've explained before, MTX will not put your sarcoidosis into remission. And it has serious side effects.

Please let us know how we can help you get started on the Marshall Protocol and on the road to recovery.

Meg

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Sue K (199.173.225.---)
Date: 07-26-04 12:31

Hello everyone,

I was just in to see my PCP this past week and showed him the underside of my upper lip which is just clustered wth white bumps like Dave described above, something I hadn't seen mentioned anywhere except by Dave. My PCP thought they were inflamed salivary glands, possibly from sarc. Anyone have any idea?

Also, PCP thought I may have sarcoma on my ankle and ordered an MRI for this week. Does sarc put me at risk for sarcoma? One specialist said I would be at risk for lymphoma because of the sarc and so PCP thought that might make me a higher risk for sarcoma.

And btw, I was just at a website for pulmonary fibrosis which states MTX as a cause for pulm fibrosis. Scary stuff!! Thank goodness I found this site and started the MP before I ever went to Hopkins.

Thanks to all of you for all your dedication to helping us get through this.

Sue K

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Kas (---.cpe.net.cable.r)
Date: 07-26-04 14:43

I used to get the bumps you are describing on my inner cheeks. They told me I had laiken planus and they would peel off and then vanish. Came with stress mostly. I have not had them for a long time now, but I am sure it was sarc related, now that I am more informed.

Re: Are these symptoms the sarcoidosis or the drugs?

Author: J.B. (---.ipt.aol.com)
Date: 07-26-04 17:05

I changed doctors because my first doctor would not take me off predinsone and put me on the MP. My new doctor put me on MTX, but has asked me to stop taking it because it interfers with Purienthol, medication I am taking for crohns disease. He is looking for different medicine to put me on. I will talk to him about putting me on the MP on my next visit. I have to print out the info. for him.
There are no doctors in New Orleans using the MP.

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Meg (---.115.72.119.static.euc.wi.charter.com)
Date: 07-26-04 21:50

J.B.,

Unfortunately, there are no doctors using the MP in the New Orleans area that we know of. You might try posting a request on the other MP websites to see if someone will send you a private message about a doctor.

Most of us live in areas where the docs are not yet familiar with the Marshall Protocol. We had to ask our own doctors and some of us had to keep looking until we found a doctor who would support us.

If you want to get well, you will keep looking. The course you are on now, will only lead to further deterioration.

I suspect your Crohn's disease would resolve with the MP also. Purinethol (mercaptopurine) is chemotherapy with many dangerous side effects.

Good luck,

Meg

Re: Are these symptoms the sarcoidosis or the drugs?

Author: ..Bell (---.triad.rr.com)
Date: 10-16-04 05:14

I was told about my sarcoid. in 1999, after a year of losing weight. I went from my 135 lbs. to 96 lbs, in less then a year. Wasn't listening to my body trying to tell me somethng was wrong. My husband notice but didn't say anything for a while because he didn;t want to hurt my feelings,or either none of my family. The thing about it at the time I still had energy to do anything I wanted. I like mowing my yard, planting flowers, playing with my kids. I was a child care teacher and love all my children teaching them games to was a very energtic woman I try anything once. Like helping my husband build things around my house. I like learning how to take care of myself if I needed too. Then one morning I look at myself in the mirror after a shower, because I was starting to hurt in my joints and did'nt understand was was going on. I was a healthy girl and a teenager I played football in high school could lift weights better then some the boys on the team. You couldn't stop me from leaning or doing anything that was a challenge. When I went to the doctors after taking all those test, the first thing they thought I had was Aids, then Cancer. Then they thought I was on drugs. I been married for 18 yrs to a wonderful man who has me so spoiled and two wonderful children, Aids was the last thing on my mind. Then I was told at my Sarcoid. never had hear of it. People didn't know how to respond to me because they thought I was going to die in months to come. But I didn't let it stop me from living even with the severe pain I have until this day. I'm in stage Three my doctor told me thats not a good thing . He is very very honest, doesn't hold anything back. I lost my teaching job over this because my immune systems is weak, lack of energy, easy to catch colds, lost of strength. Now my children have to do my heavy work around the house, pacing myself to clean up. Cough when I laugh with my family somethings so severe from coughing my children thinks when they come home from school they will find my dead on the floor from losing my breathe. My family is so worry they are doing they best not to show it because I try not to show my pain. Everything that this disease can do to you , has done to me except take my eyesight be I am having problems with that now. I thought I was the only who felt this way until I look on this website. I wanted to find someone who going through the same thing i am for all these years. I want to be fixed. Can someone help me to live a little in my life. I'm only 37yrs old and just want to watch all the little people in life grow up. And to die old with my husband who I love with all of my life. I know I have talk to much, but I couldn't find anyone who how I feel aboout my pain and the suffering I feel with this disease. My doctor told me my will never go away just keep taking my presoidine and live life. So I keep my life in the hands of God my Savior.. Thanks for listening to whoever reads this I needed this.. God Bless Bev oct 2004

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Caroline (---.dsl.stlsmo.swbell.net)
Date: 10-16-04 07:16

Bell,
Welcome to SarcInfo. Sarcoidosis is a systemic , chronic, progressive disease. It doesn't go away on its own or with prednisone treatment. We know what causes sarcoidosis and that prednisone is the wrong treatment. Our research has developed a safe, effective treatment. The Success Stories thread has lots of first person accounts of the efficacy of treatment with the Marshall Protocol. All of the symptoms you mentioned are very classic of Th1 disease.

This treatment has a 95% success rate. We want everyone to get well; not just a few.

You will want to first discontinue any supplements, and start staying out of the sun, and restrict your Vitamin D intake from diet and other sources. Many tines just following these simple steps will help you feel better. Purchase Noir sunglasses for both indoors and out. These protect your eyes from UVA, UVB and from Infrared.

Hang in there and have faith. The time has come to put your disease into a remission. It will take some work on your part and it may not always be easy, but it will be worth it if you follow the instructions.

Staging is antiquated and seldom used any longer. Prednisone, besides being the wrong treatment has a long list of adverse side effects; cataracts, diabetes, avascular necrosis (bone death) to name just a few.

Most of us are not being treated by our specialists because we have found them resistant to a new treatment plan. We recommend that you ask your primary care provider, preferably an Internist to order the tests for you and then the medications.

Let us know if you have any questions. Caroline

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Bell (---.triad.rr.com)
Date: 10-16-04 22:41

Caroline,
Thanks you for responding to my letter. I didn't know how the prednisone reacts to my illness. Wondernwhy my doctor didn't tell me about how it doesn't help. Only thing it does to me is leaves a bad taste in my mouth . It hasn't even put my weight back on me, I went from 96 lbs. to only 113lbs.. I miss my 135lbs very much. Some days I can eat the whole house and then some days I don't like food at all. But my family make sure I eat Something. I promise to stay out of the sun as much as can. Please tell me what is some of the food I can eat that doesn't contain vitamin D or what should I look for in food. I will do my best in getting the medicine you talk about, because I trying of getting out of breathe when I go from my house to my car and having to sat there for a few minutes while the pain running through my chest and neck to go away. I feel the numbness on the right side of my body. from neck to hip bone, and can't do anything but wait the pain out. Losing sleep from pain and coughing at night waking up my husband. He sometimes be tired going to work because of my coughing and tossing and turning. He is the only provider for four people, because people don't hire someone with an illness they doesn't knoe about. Thank you for the information you sent to me and if you learn anything else please let me know. I will do my best to get rid of this. Getting tired of having it.
God Bless,
and thank you please keep in touch

Bell

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Lottie (---.proxy.aol.com)
Date: 10-16-04 23:32

Bell,

A lot of doctors have not even seen a Sarcoidosis patient, and most doctors who know anything about Sarcoidosis still don�t realize and/or accept the concept that bacteria cause it. We now know that it is caused by bacteria that actually invade and live inside the very cells that are supposed to kill them. The Marshall Protocol is the only treatment presently in use that will assist your body in attaining remission.

Your doctor probably felt that Prednisone was the only thing that could help you deal with the symptoms. Sadly, while it hides the symptoms, it allows the bacteria to continue to grow and multiply, and can cause damage to your body as well. You will need to wean off of Prednisone so that your immune system can function once again. When you are ready to do that please read the information in the article, "Weaning from Prednisone"

That taste in your mouth is probably from excess vitamin D in your system. Have you gone and looked at this thread? Hypervitaminosis D Symptoms You may be amazed at how many of the symptoms you have. A metallic taste in your mouth is one of the symptoms.

Here is information about D in food Avoiding Vitamin D while on the Marshall Protocol. It is on our sister site MarshallProtocol.com.

Also, do NOT take any vitamins and/or other supplements that have vitamin D in them.

The first thing that you will need your doctor to do is to order the D metabolites tests and others as noted in this article, "How does Doctor measure my ACE, and my D-metabolites?". Print it out for your doctor so that he orders the correct tests. Be SURE THAT THE LAB KNOWS THAT THE 1,25 D SAMPLE MUST BE KEPT FROZEN in transit and until testing is done.

When you get the results, please obtain a copy, and post the actual numbers from the results on the thread *** My Vit. D and ACE Test Results ***, and we will help you evaluate them for your doctor. Do NOT accept the generalization that they are "within normal limits". We need the actual numbers These tests will show the amount of inflammation that is going on in your body. You may already have a diagnosis of Sarcoidosis, but these baseline tests will help as you progress on the Marshall Protocol, and also help you know when you are in remission.

Please, only go out in the sun if you HAVE to. If you must go out in the sun, please cover up completely! Long pants, long sleeves, hat, scarves, and gloves. Also, obtain the NoIR glasses as indicated in this article Protecting your eyes in Sarcoidosis. You want one pair for inside, and one pair for outside.

You must also block the sun from coming into the windows in your house. Yes, it�s that important!

Keep in mind that your doctor may not have heard of the Marshall Protocol.

The more you read and understand, the better you will be able to help your doctor to understand about Sarcoidosis and the Marshall Protocol. Most of us have been most successful with our GP�s, as they seem to be more open to using the MP than the specialists. And, you will probably find yourself helping your doctor to learn and understand the Marshall Protocol.

Please read all the information which is located at the top of all the pages. Read both patient and physicians information, and print out the information for doctors to take into your doctor on your next visit. This article will give you advice on how to approach your doctor, from other patients and moderators at MarshallProtocol.com, which you may find useful.

Please let us know how you are doing!

Lottie

Re: Are these symptoms the sarcoidosis or the drugs?

Author: Caroline (---.dsl.stlsmo.swbell.net)
Date: 10-17-04 07:52

Hi Bell,
It's not unusual for physicians to be unfamiliar with sarcoidosis. Some never see a patient with sarcoidosis. The ACCESS study contains flawed results that most doctors use as a basis of treatment for sarcoid. Please read the findings here: Sarcoidosis, Lessons Learned from the ACCESS Study.

Also read the following thread: Vitamin D Levels in Food. I think all of your questions about diet will be answered there. This explains what foods to avoid, and suggestions for replacement food items. Have you ordered your Noir's yet?

Bell, all the symptoms you are experiencing will eventually resolve after initiating the Marshall Protocol. Have you printed the Physicians papers at the top right of the main menu and discussed the MP with your physician? As I said earlier, you must wean off of prednisone, it will only make your sarcoidosis worse. In addition to that, the potential risk of developing one or more of prednisones adverse side-effects increases with each dose. A tutorial to help you is, Weaning from Prednisone.

You must take charge of your health. If you are unable to find a supportive physician, we will try to assist you.

Caroline

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Historical perspective on Sarcoidosis:

The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
Steroid-Treated patients Have higher risk of Cardiac problems
"Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
"Corticosteroids contribute to the prolongation of the disease by delaying resolution"
"No data to suggest that corticosteroid therapy alters long-term disease progression"
Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
Clinical Guideline For Treatment Of Arthritis Pain
Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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