Update on Sandy Petry, Bonnie’s daughter:

Sandy moved in with us in May of this year because she thought she was dying. She has been unable to work for the past four years due to increasing fatigue, a cough, general pain throughout her body and swelling of the lymph glands in her upper body. In September she was diagnosed by her dentist as having osteomyelitis of the jawbone with Lyme disease bacteria, Borrelia burgdorferi, the main cause of infection. This has led to extensive dental surgery, including the extraction of all her molars, removal of one of her upper front teeth, and the scraping of her jawbone (curettage of the bone or cavitation surgery) in all four quadrants and at the site of her missing front tooth. She has been taking homeopathic remedies for Lyme disease and other bacterial infections, pain and edema.

Looking back, and from our research — which we wouldn’t have known to do if it weren’t for Dr. Clark — Sandy’s physical problems probably began with her pediatrician prescribing tetracycline for her when she was very young, which damaged her teeth. Then, when she was nine, she was slammed under the chin while swimming in a pool by someone’s head, which caused hairline fractures in many of her molars. Our dentist, in 1970, said that he thought the fractures were of no importance. Now, we think her history of grinding her teeth at night was a sign of hidden trouble. Since puberty, she has had such pain from endometriosis that she had two endometriosis operations and for years has been addicted to prescription pain pills (she stopped taking them in March of this year because they no longer helped with the pain she had throughout her body). In 1983, at the age of 22, she had her wisdom teeth removed, and developed three “dry sockets.” In 1997 her pain was so severe with endometriosis that she agreed to have a complete hysterectomy. That was also the year that she discovered one of her molars had a root fracture and her dentist root canalled it, then it was lost due to continued pain. Over the next four years, she had 3 more extractions due to root fractures, but her dentist and several doctors that she went to for help in Washington and Calif. never connected her fatigue, cough, pain and swelling to her teeth.

Sandy has asked me to correct a statement in the last chapter of her story (NL #41), where I wrote that she was pain-free for three days after having had two more teeth extracted. She was not pain free. At first, she had a slight reduction in pain in her mouth and of pain and swelling in her lymph glands, but by day three the pain and swelling were back.

October 16, 2001:

At Sandy’s dental appointment on October 16^th she had cavitation surgery at her upper right wisdom tooth site and was tested again by the dentist with his Computron device. She again tested positive for Borrelia burgdorferi. She had been taking his homeopathic shots for Lyme disease bacteria for three weeks and he told her to keep taking them as they are to be taken for five weeks (one shot every other day, three times, then one shot a week).

As luck would have it, in the dentist’s waiting room Sandy struck up a conversation with a young man. They exchanged Lyme disease stories and he asked her if she had heard about a product called Immune-Assist that contains the extract of six medicinal mushrooms that is being used to cure Lyme disease. He had information about it with him that he had brought for the dentist, so she got the name and phone number of the scientist who formulated it. (For more information about Immune-Assist please turn to page 19.) 

After talking to the scientist and reading everything she could find on the Internet about the six mushroom extracts, Sandy ordered a month’s supply of Immune-Assist and began drinking a packet of it morning and night on October 23^rd. Due to a request by an M.D. (explained later), on October 29^th — after just one week of taking Immune-Assist — Sandy had a blood test for Lyme disease. The test came back (a copy is enclosed at the back of this newsletter) indicating that Sandy’s blood is consistent with infection by B. burgdorferi in the recent past, but is not consistent with acute infection at the present time.

We feel positive that the Immune-Assist is what helped her to get rid of the acute infection of the Lyme disease bacteria, Borrelia burgdorferi.

Since she’s been drinking Immune-Assist, Sandy is much more clearheaded, cheerful, and energetic. The mushrooms act like a miracle on her mood and thought processes. I’m amazed that she can be so positive and cheerful and able to prepare a delicious meal so easily and quickly after taking Immune-Assist for 3½ weeks, when before taking it she couldn’t.

Dale even began taking Immune-Assist after he noticed how much better Sandy is feeling and that I have much more energy, get to sleep quicker and have been calmer about life’s ups and downs since I’ve been taking it. For 40 years I’ve been taking vitamins (now, I take EPA fish oil capsules, Evening Primrose oil capsules, SAM-e, CoQ10, L. Salivarius, cayenne “Power Caps,” bioflavonoids and all 13 vitamins) and I never want to be without them. However, the ones I would sacrifice my material possessions for are — the Water Oz minerals (calcium, magnesium, potassium, sulfur, zinc, copper, iodine, and selenium), Panteric Extra (pancreatic enzymes) and Immune-Assist — for the physical comfort they give me (the absence of leg cramps, indigestion, allergies, insomnia and anxiety).

Immune-Assist also helps to clear the skin. Sandy had a small bump on her face at the jaw line and I had a red mark on my leg — both were there for years — and they vanished in less than a week after taking Immune-Assist. The scientist told us that one of his customers had a wart on the top of his head fall off after being on Immune-Assist for three months! 

Coincidentally, on October 16^th, Sandy received a surprise call from a doctor’s office with the news that that the doctor had agreed to see her. She had been referred to this doctor in June and had called his office several times to make an appointment, but had been put off each time with various excuses. Then, six weeks prior to this call, she was told that the doctor was not taking new patients. When she was told that, Sandy was reduced to tears because before the lady made that statement she had held a long conversation with her about osteomyelitis of the jawbone. She even said the doctor knew that with this condition the lymph glands of the upper body sometimes become swollen and painful, which led Sandy to believe that this doctor might be able to help her. The nurse ended the emotional conversation by saying she would talk to the doctor and try to get Sandy an appointment and would call her back within 24 hours. When six weeks went by without hearing from her we thought it would never happen, but when it did, Sandy gratefully accepted the appointment.

October 25, 2001:

The doctor’s visit was extraordinary. He knew exactly what Sandy is going through. He explained that he has written several papers and often gives lectures to doctors about this dental problem that causes fatigue, various degenerative diseases, and swelling of the lymph glands, the latest at Stanford University the day before Sandy’s appointment.

Sandy’s complaints were fatigue, an extremely swollen and painful upper body (stomach, breasts, upper arms and neck), a persistent cough and pain in both the left and right upper quadrants of her mouth where she had four teeth extracted (three recently).

The doctor performed a nasal endoscopy and a physical examination. He diagnosed Sandy as having ischemic osteonecrosis and chronic sinusitis — probable odonogenic. (Odonogenic means, “arising in tissues that give origin to the teeth.”)

The doctor ordered:

·        A blood test for Lyme disease (results are enclosed at the back of this newsletter).

·        A blood test to screen for coagulation risk factors. Result; Elevated Lipoprotein(a).

·        A CT scan of her sinuses. Result; “developmentally hypoplastic frontal sinuses.” (Hypoplastic: “incomplete or defective development of the enamel of the teeth; it may be hereditary or acquired.”) [Note: Sandy’s teeth came in visibly damaged by tetracycline.]

·        A bone biopsy. Sandy’s dentist removed a piece of bone from her jaw when she had cavitation surgery on October 31^st. The bone was sent to Head and Neck Diagnostics of America and the diagnosis was made on November 7, 2001. Diagnosis: Partially nonviable bone with marrow fibrosis and lymphocytic infiltration, consistent with chronic nonsuppurative osteomyelitis, alveolar bone. There is no evidence of malignancy. (Osteomyelitis is infection of bone marrow. Nonsuppurative means nonformation of pus.)

The doctor prescribed: Prolonged antibiotics (30 days) for osteomyelitis; 20 Hyperbaric Oxygen treatments to help her jawbone heal; a low-level anticoagulant because elevated lipoprotein(a) causes an inability to break up clots. Sandy’s cholesterol level is high, 312, and the doctor says high cholesterol causes thick blood. To reduce her cholesterol and lipoprotein levels, he told her to take one EPA fish oil capsule, 250 mg. of niacin, and eat 2 Tbs. oat bran — all 3 times a day. (She is also taking 2 Colon Pills daily and one coffee enema as the bran would otherwise make her miserable!) (Sandy has also started taking Power Caps — cayenne pepper — to reduce her cholesterol as that is what reduced mine.)

To Sandy’s question, Why am I so swollen?” the doctor said her lymph system is full of bacteria and toxins coming from her jawbone and is doing an excellent job of keeping them from entering her bloodstream. If they do gain access to her blood, they will damage her vital organs and she could go into Septic shock (invasion of the blood by bacteria). Bacteria produce many toxic products, and some of those products cause blood pressure to plunge to such low levels that body organs don’t receive oxygen and nourishment. “Shock” refers to the profound blood pressure drop, and “septic” refers to bacteria as being the cause.

The doctor gave Sandy the following information sheet . . .

A Note to Patients with Jawbone Osteonecrosis (NICO, “neeko”)

You have microscopic evidence of ischemic osteonecrosis (literally, “dead bone from poor blood flow”), a bone marrow disease with either dead bone or bone marrow that has been slowly strangulated or nutrient-starved. There are a number of local and systemic problems capable of producing this bone disease, but more than 4 of every 5 patients with osteonecrosis have a problem, usually inherited, of excessive production of blood clots in their blood vessels. These are not normally picked up with routine blood studies. Bone is particularly susceptible to this problem and develops greatly dilated blood vessels, increased, often painful, internal pressures, stagnation of blood, even infarctions (completely blocked vessels). This hypercoagulation problem might be suggested by a family history of stroke and heart attacks at an early age (less than 55 years), hip replacement or “arthritis” (especially at an early age), and deep vein thrombosis. Chronic fatigue syndrome and fibromyalgia are also associated with excess coagulation and are frequently found in patients with osteonecrosis, but the significance of this association is not yet known. The jaws have a special problem with this disease because, once damaged, the diseased bone is poorly able to withstand low-grade infections from tooth and gum bacteria. Also, when a dentist works on a tooth he or she uses strong chemicals (vasoconstrictors, e.g., epinephrine) designed to make local blood vessels smaller and thus keep the local anesthetic in place longer. For someone who already has a problem with poor blood flow through the jaws, this may be disastrous.
(Note: Sandy’s dentist uses an anesthetic that does not contain epinephrine.)

History

When jaw osteonecrosis, i.e. bone damaged by poor blood flow, is painful it is given the name of NICO (Neuralgia-Inducing Cavitational Osteonecrosis). For those patients without pain, the more generic term, maxillofacial osteonecrosis can be used, although some prefer the term “Silent NICO,” in keeping with the orthopedic surgeons’ use of “Silent Hip” for painless osteonecrosis of the hip. The name NICO was first used in 1989 in a research paper presented to the International Association for Dental Research. It incorporates the two most unique features of osteonecrosis, i.e. the often neuralgia-like nature of the associated pain and the hollow spaces created within the bone marrow. Older names for this disease include: Robert’s bone cavity, Ratner bone cyst, chronic osteitis, interference field, and trigger point bone cavity. The first report of such a lesion in the jaws dates back to the 1860s, when it was thought to be purely an infection and was often associated with severe toxicity.

Overview/problems of treatment

Regardless of the underlying cause, the bone develops either a fibrous marrow (fibers can live in nutrient starved areas), a greasy, dead fatty marrow (“wet rot”), a very dry, sometimes leathery marrow (“dry rot”), or a completely hollow marrow space (“cavitation”). Any bone can be affected, but the hips, knees and jaws are most often involved. Pain is often severe but about ⅓ of patients do not experience pain. The body has trouble healing itself from this disease, but about ⅓ of cases do indeed heal themselves without the aid of a physician. Surgery eliminates the problem in the other ¾ of patients with jaw involvement.

Curettage of the bone lesion is the standard treatment

The abnormal intrabony tissues usually must be surgically removed via decortication and curettage, i.e. removing the outer hard layer of bone and scraping out fragments of diseased bone marrow. Once the bony walls of the defect feel hard and look normal again, the bony defect frequently heals and the intense facial pain subsides dramatically or disappears completely. However, many patients must have additional curettage procedures, usually smaller procedures than the first, in the same site before the treatment “takes” and the bone is able to properly heal itself. Almost ⅓ of jawbone patients will need surgery in one or more other parts of the jaws because the disease so frequently has “skip” lesions, i.e. multiple sites in the same or similar bones, with normal marrow between. In the hip, almost half of all patients will get the disease in the opposite hip over time; this phenomenon occurs in the jaws as well.

We leave you with the suggestion by G. V. Black, the Father of Modern Dentistry, to remove “every particle of softened bone” and expect that “generally, the case makes a good recovery.”

This is Bonnie again:

Today is Thanksgiving and Sandy’s lymph glands continue to be extremely swollen and painful — even the bottoms of her feet are swollen. However, her last dental surgery on November 19^th relieved the pain in her mouth and she is hopeful that all the infection and dead bone is gone from her jawbones. (Since October 16^th — due to pain — she has had repeated curettage surgeries in all four quadrants of her mouth and has had two more teeth extracted.)

So, after thinking long and hard about Dr. Clark’s letter saying if she didn’t want to extract her teeth she wouldn’t be able to help her, the information on this disease that the doctor gave her, the book report on Death and Dentistry, and the results of the CT scan of her sinuses, she has decided to have her remaining 10 teeth extracted. Then, she is sure the Immune-Assist and the 20 Hyperbaric Oxygen treatments will get her lymph glands back to normal. (The dentist upped the doctor’s prescription for Hyperbaric Oxygen treatments and gave her a prescription for 20 days of two treatments a day for 90 minutes each, so she’ll be spending most of the days between now and Christmas in the Hyperbaric tank!)

As I researched Hyperbaric Oxygen Therapy I was reminded of the time a few years ago when someone asked Dr. Clark what she wanted for Christmas and she answered, “A Hyperbaric Oxygen Chamber for my clinic.” (Please turn the page for more on HBO.)

Love,

Bonnie

The Material in this letter is for educational purposes only and is not intended as a prescription for any illness.