Head and neck symptoms

• see mental and neurological
• ears
• eyes
• dental (teeth) and mouth
• lymph nodes
  • swollen/enlarged lymph nodes
    • indication of cancer?
    • Patient experiences
• nosebleeds
• thirst
• throat

Facial numbness and tingling

Many people with Th1 disease experience facial numbness and tingling. See P.Bear's post to JJM

Some people will also experience facial tingling and numbness when their 1,25-DPrimary biologically active vitamin D hormone. Activates the vitamin D nuclear receptor. Produced by hydroxylation of 25-D. Also known as 1,25-dihydroxycholecalciferol, 1,25-hydroxyvitamin D and calcitirol. surges in response to sunlight sensitivity/sunlight exposure. See Why are my symptoms more intense after exposure to light &/or Vit D?

What can I do for my nosebleeds?

Causes

This article notes that systemic disease can cause nosebleeds. Nosebleeds may be due to inflammationThe complex biological response of vascular tissues to harmful stimuli such as pathogens or damaged cells. It is a protective attempt by the organism to remove the injurious stimuli as well as initiate the healing process for the tissue. and exacerbated by immune system response.

Treatment

-Stay calm.

-Sit down and lean slightly forward.

-Keep your head above your heart.

-Lean forward so the blood will drain out of your nose instead of down the back of your throat. If you lean back, you may swallow the blood. This can cause nausea, vomiting and diarrhea.

-Use your thumb and index finger to squeeze together the soft portion of your nose. This area is located between the end of your nose and the hard, bony ridge that forms the bridge of your nose. Keep holding your nose until the bleeding stops. Don't let go for at least 5 minutes. If it's still bleeding, hold it again for 10 minutes straight.

-Place a cold compress or an ice pack across the bridge of your nose and/or the back of your neck.

-Don't do anything that may make bleeding start again, such as bending over or blowing your nose for at least 48 hours.

-Doc may need to cauterize a leaking blood vessel if the bleeding cannot be stopped.

-Doc may want to check your coagulation time if nosebleed repeats.

See How to treat a nosebleed at this link and this link.

Prevention

-Use a humidifier with your oxygen and/or your cpap machine.

-Apply a water-based ointment (Ayr is one OTC brand) to the inside of your nose with a Q-tip to keep it moist. -Do not blow your nose vigorously.

-Do not pick your nose.

-Increase the humidity of your home.

-Do not take aspirin, Vit E or essential fatty acids or any other OTC medications that might thin your blood.

-Vit K may be needed if you are deficient (deficiency in adults is rare).

Members experiences

Bill

After an antibiotic break

I am also happy to tell you all that the surgeon could not find the node it shrunk from 3.8cm to to small to safely do a punch biopsy. The vacation did it's job beautifully. The oncologist does not even want me for a follow up.

Hey this thing works

………………………………………………..

Carole

I was also concerned about the growth of my lymph nodes, as were my oncologist and pulmonologist, from December 2003-February 2004. They felt sure that I had lymphoma from the PET scan and the increased size and number found from numerous CT scans. The mediastinoscopy in February revealed the sarcoidosis. I had already begun Benicar; and after the surgery, I started the minocyclineBacteriostatic antibiotic used by Marshall Protocol patients.. The rest is history: The Marshall ProtocolA curative medical treatment for chronic inflammatory disease. Based on the Marshall Pathogenesis. saved my life!

I had scans after surgery for three 3-month periods and then 6-month periods until last summer, which then became on a yearly basis. When I questioned several times about what “normal” would be, they said that it is usually anything 1 cm or less.

……………………………………………….. SherryH

Lumps were one of the big reasons I went to my doc for assistance. No-one seemed to be able to figure out what they were. After I met with my current doc he told me about the MP.

My lumps I think may be a mixture of enlarged lymph glands, lipomas, fat deposits…maybe granulomatous fibrosis or scarring. (?) Don't really know without a biopsy. I guess I've come to an uneasy acceptance that it doesn't matter….MP will hopefully address them all.

Well, during phase I and much of Modified Phase II, which I'm on now (approx 9 months total on MP) has seen an increase in lumps/lymph etc. Often these are very tender for a while, then eventually seem to become painless, though still enalrged or swollen. In the last month I have noticed that the chain of lumps/lymph on my right leg have truly begun to decrease. I didn't quite believe it at first as it was a very slow process. But they have absolutely become smaller….either getting softer and then fading away or getting smaller and becoming very hard, like the tip of a pin for sewing with those little knobs on top. Then, they seem to get absorbed. This has been SO reassuring to me. Even as I see that I may have more swellng/enlargement throughout MP, as I still am experiencing now in other parts of my body, I can feel reassured that there is a good chance they will eventually dissolve/be reabsorbed/melt away…whatever. Helps much with my anxiety about the whole thing, too. :)

My lymph nodes are growing. Is this normal? Should I be concerned about cancer?

Lymph nodes play a criticial role in removing bacteria, abnormal cells and other matter as part of the immune system reaction to invasion by pathogens.

Lymphadenopathy (enlarged lymph nodes) is usually a sign of infection and is very common in sarcoidosis. Lymphadenopathy can occur anywhere there are lymph nodes. Lymphadenopathy can often be detected by low-tech means: visually or by palpation. Lymph nodes deep in the groin or beneath the ribs in the chest can be monitored with imaging such as chest xray, CT or PET scan.

Enlarged lymph nodes in sarcoidosis patients are a sign of infection and an indication that the immune system is attempting to eliminate the bacteria.

Treating Th1 inflammationThe complex biological response of vascular tissues to harmful stimuli such as pathogens or damaged cells. It is a protective attempt by the organism to remove the injurious stimuli as well as initiate the healing process for the tissue. with the Marshall Protocol means that symptoms usually get worse before they get better, due to immunopathologyA temporary increase in disease symptoms experienced by Marshall Protocol patients that results from the release of cytokines and endotoxins as disease-causing bacteria are killed.. It is common for lymph nodes to increase in size, tenderness, and/or number as part of the immunopathology of recovery. This is evident when palpated or visible lymph nodes wax and wane with antibiotic administration. As the MP treats the underlying cause of sarcoidosis and lymphadenopathy, it may take many months for lymph nodes to return to normal size (reported to be 1cm or less).

When the doctor suspects enlarged lymph nodes may be cancer

Most patients with lymphadenopathy had tests which ruled out lymphoma (cancer) before they were diagnosed with sarcoidosis so you may be concerned, once again, about the possibility of cancer.

Members and/or doctors who don't understand the pathogenesis of Th1 inflammation and the natural immunopathology that occurs during treatment, may become alarmed when lymph nodes increase in size or do not decrease. Doctors may want to reassure themselves or the patient by doing additional biopsies to, once again, rule out lympoma. However, this invasive procedure is rarely necessary. Since lymphoma develops very slowly, a 'watch and wait' tactic is more appropriate. Slowing down the bacterial killing or taking a break from the protocol can also be done if anyone needs immediate reassurance that inflammation is responsible for emergent or increase lymphadenopathy while on the MP.

See:

CANCER and Th1 inflammation re Diagnosing a biopsy correctly

No one can measure many granulomas you had a few months ago to compare with how many you might have now. It's only upon autopsy that pathologists can get a small idea of the granuloma load.

As we've explained, lymph nodes enlarge due to infection, inflammation or cancer. You already have biopsy-verified sarcoidosis, which is the gold standard for diagnosing sarcoidosis. Try to understand that most physicians do not believe sarcoidosis can cause the damage it makes in reality. Most patients look pretty good and the internal damage is not visible. And most doctors have not dealt with sarcoidosis patients who are very ill.

Because of that, good, well-meaning doctors look for other explanations for sarcoidosis symptoms such as your inflammed lymph nodes. Add to that the fact that you have been losing weight (which is consistent with our experiences with the MP) and how litigious our society is in medical malpractice cases concerning missed cancer diagnoses, and you can see why your doctor is motivated to rule out cancer.

You alone can determine how much you are willing to expend time and energy to be poked, prodded and scanned to rule out cancers or any other differential diagnosis your physicians may suspect. But that testing can be expensive, time consuming and lead to nowhere. And you are the only one who knows how much of this you need before you are reassured.

Part of being an active member of your medical team sometimes means reassuring the doctor. Sarcoidosis is a scary disease for physicians, which is part of why they tend to get several specialists involved and do lots of testing. And they tend to want to do that whether the patient is stable of getting worse.

Sometimes a simple nap or brief rest can ease the discomfort of immunopathology symptoms. Our Tool List to check when Herxing is a great review to determine steps to take to keep these symptoms manageable. If any of these work, it lends credibility to the concept that you are experiencing immunopathology.

I understand now that you were asking would granuloma be found if you had a lymph node biopsied? We aren't all-knowing, but chances are good, since you already have biopsy-verified sarcoidosis; see this report indexed on PubMed.

The NHLBI advises that only one biopsy is necessary for sarcoidosis. But like I said, doctors get nervous and as long as the patient is willing, they can go on doing additional biopsies as time goes on.

It sounds like your concern is: “What are the chances the lymphadenopathy is now cancer and not sarcoidosis?”

Physicians may continue to be concerned about cancer, even when they have a biopsy-verified diagnosis of sarcoidosis. The best things you can do - to prepare to discuss this with your doctors are: - read how doctors diagnose the cause of lymphadenopathy so you can understand their perspective - read through the radiologist's report on Bill's recent CT scan, and look up any words you aren't sure about so you know exactly what was described. Radiology has its own language, so a medical dictionary may be necessary. - search PubMed to see if there are any similar reports of this in sarcoidosis (for example, Pancreatic sarcoidosis with regional lymph node involvement) - evaluate Bill's progress thus far on the MP and make a list that you can share (and maybe leave) with the doctors.

All these will help your dicussion be more productive. You have to understand that doctors have more education and experience with cancers than with sarcoidosis. Since YOU have more experience with sarcoidosis, you have a valuable role to play in educating them, even if that includes presenting them with information from PubMed or other sources. (See, doc, there seem to be reports of similar cases in sarcoidosis.)

Finally, sharing your own observations of progress and explaining the immunopathology to them again should ease concerns and allow you to opt for a “watchful waiting” approach if that is what you prefer instead of more testing or an invasive biopsy.

You can also search our website for other helpful information such as the information about PET scans in this thread on sarcoidosis.

Belinda Fenter

My ears are bothering me. What can I do?

Immunopathology can cause many ear-related symptoms. As always, your first measure should be to slow down the immune system response to see if it provides relief. If not, there are safe measures you can take to palliate these intolerable symptoms.

Our members also provide reassurance the MP will treat ear problems.

Tinnitus (ringing in the ears)

Tinnitus is common among our study cohort and many members have reported resolution of this annoying symptom.

-Extremely loud and high pitched tinnitus was one of the symptoms that I had when I started the MP. When I went through the modified Phase Two, I remember waking up, and trying to figure out what was “wrong”. I finally realized that the tinnitus was gone! ~Lottie

-Since starting the MP, my tinnitus has slowly but steadily decreased. It used to flare up immediately as soon as I listened to music or heard a loud noise. Walking along a busy road was torture. I couldn't watch TV because after a couple of minutes the ringing would drown out what was being said. Now I'm back to my old self - listening to music all day without any bother. ~Marselle

-In late 2001 my Tinnitus slowly built up to the point where it was making it very difficult to hear people in the same room. When Benicar came along in 2002, the Tinnitus dropped back to tolerable levels. It has gradually reduced as I went through the bug killing, and I now only have occasional 'faint 4KHz tones' in my ears, and only when I am sitting in a quiet room in the dead of night. ..Trevor..

Hearing loss

-My left ear was hit by a fragment of an anti-tank grenade back in 1970 (or so) and was clogged with blood and muck for about 6 months. It had been partially deaf, and getting worse, ever since that.

Except that about two years ago I suddenly realized that I was using that ear for the telephone again. Sure enough, the hearing has come back, and, if anything, the left is now better than the right ear.

I started enjoying music again. All my old CDs have been converted to MP3, and I am just starting to listen to classical choral music again (did I tell you that Liz and I were both in the University Choral Society while undergrads?) ..Trevor..

-I had severe loss of hearing in one ear and constant ringing and buzzing….sometimes I would even hear “tunes”. Once I was put on antibiotics that started to slowly get better…today I have no hearing loss at all. ~Aunt Diane

Cerumen (ear wax)

If excess ear wax is a problem, you might try Similasan Ear Wax Relief, available OTC.

Congestion

Blocked ears are not an uncommon symptom/problem in Th1 disease and often occur in folks with a history of sinus infections.

-I use saline nasal spray, which helps reduce congestion in sinuses, and ears. It can act like an astringent which can help reduce the congestion. Afrin nasal spray can also help open up the ears. Use one or two sprays on the side that's affected. You can get either the saline nasal spray or the Afrin (store brand is okay) at a drug store or most grocery stores. ~Lottie

-Oh one other thing, my left ear has almost always been plugged (eustachian tube) lately it has been unplugged and now pops when I yawn. ~walleyeguy

Pain

Ear pain can be caused by an acute infection (otitis media), nearby lymph node swelling or nerve inflammation.

Pain may be relieved by measures to resolve congestion. Chewing gum may dissipate ear pain, if the eustacian tube was blocked.

-I have had recently over 70 days with an ear IP that I was convinced initially was an infection. As it lasted both my stoic MP proficient doctor and I began to be concerned about permanent hearing loss. My doc insisted on culturing the discharge. Guess what ….. no bacteria. We both calmed down then and I decided to let it run it’s course

I had had a lot of problems with my ears as a child and luckily because there was previous scarring on the ear drum when ever the pressure built up my ear drum would perforate and I would get some relief from the pain. Wet ears but no pain.

I palliated with pain meds and beni q4hrs until I just got so sick of it and took (on docs advice) frequent mino - 50mg every 6 hrs for 8 days, if I can remember correctly. The frequent mino stopped all symptoms and I went back to normal MP and now my ear just does it's infection impersonation on day 3-6 only and without the perforations. So if frequent mino works for you it may be the way to go. ~scarab

Drainage

- I saw my Doc this morning and the perforation is totally healed. We are now both happy to let the IP proceed until the ear is clear of CWB. It had repeatedly perforated over the last 50 days so we there was some concern about permanent damage to my hearing but it is clear that it heals perfectly. I expect the ear to continue draining through the ear drum again. I will simply palliate and allow it to do it's thing. The discharging ear is tolerable but worry about hearingimpairment is not. ~scarab

Heartbeat heard in ears

The 'heartbeat' you hear in your ear is called pulsitile tinnitus. This article states, “Pulsatile tinnitus is usually due to a small blood vessel that is coupled by fluid to your ear drum. It is usually nothing serious and also untreatable.” Of course, we believe that tinnitus is due to Th1 inflammation and will resolve with the MP.

Vertigo

Members experiences

-I have suffered from chronic ear infections since childhood, had the tubes in etc. I've told several of my doctors over the years that I believed I had the same infection that never went away but that was always dismissed. I've also suspected that this chronic infection has played some role in my developing “autoimmuneA condition or disease thought to arise from an overactive immune response of the body against substances and tissues normally present in the body” disease. Then recently I found this article in Science Daily reporting that persistent biofilmA structured community of microorganisms encapsulated within a self-developed protective matrix and living together. bacteria are now suspected in chronic ear infections. I found this quote particularly interesting:

“It appears that in many cases recurrent disease stems not from re-infection as was previously thought and which forms the basis for conventional treatment, but from a persistent biofilm,”

Here's a link to the full story if you're interested: http://www.sciencedaily.com/releases/2006/07/060712075834.htm

As far as my experience so far, I had my ears become painful and infected once early in the protocol and was prescribed antibiotic drops. The symptoms faded after a while and I haven't had another bad infection in them since. I still have congestion in them now and then but no pain. I do have some tinnitis that started after a particularly bad infection that burst my eardrum in my teens and it has increased and decreased a few times but not yet gone away for me. I'm just a little over a year into the protocol though. I (luckily) don't have signifcant hearing loss from all this so can't comment on that in particular… ~NorCalJim

-I have had ringing in my ears for a long time, since about 1968. Right after I was diagnosed with the sarcoidosis a hearing test revealed that I did not hear high pitched sounds from my left ear. I had 2 different doctors at that time tell me this. One told me that he had seen patients with sarcoidosis with this and tha my most likely was caused by the sarcoidosis working on my audio nerve. Since that time I have had other hearing test from the oil company that I worked for. They checked our ears every year and always told me the same thing that I did not hear high pitched sounds from my left ear. They even, after the first hearing test from them, they even sent me to another doctor for another hearing test. Results alway the same.

Since I have been on the MP the ringing has gotten about 90-95% better(some days no ringing at all) and on hearing high pitched sounds, I have noticed that when I am listening to music I hear sounds in the music that I have never noticed before. But I have not had a hearing test since about spring of 1991. ~Freddie Ash

-Tried a few drops of the diprosone in each ear, and it calmed down the eczema almost completely. Fantastic. Won't need to use it for awhile, if again. ~ Honey

See:

My doctor thinks I have an upper respiratory infection. What should I do? (Sinus infection, cold, flu, pneumonia, bronchitis)