Topic: Painful subcutaneous lipomas- Dercum's disease, Type III...
Melanie Reber
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Member # 3707
posted
Alright, so this is my disease of du jour...
I've been asking about this for years now here, and asking my docs, and no one seems to know what these tiny lumps that feel like aliens scratching to get out of me are!
PLEASE tell me that I am not the only one here...
This info is from a fibro site, but I found it very interesting in my search to understand my painful lipomas. (bolding is mine)
One very common symptom expressed by fibromyalgia patients but not commented on in most textbooks is the presence of painful lumps under the skin. These lumps are peculiar in that they can't be seen, but patients can feel them under the skin.
Some people attribute these lumps to ``stuck'' superficial fascia. Superficial fascia is attached to the underside of your skin. Capillary channels and lymph vessels run through this layer, and so do many nerves. The subcutaneous fat is attached to it. If your superficial fascia is healthy, your skin can move fluidly over the surface of your muscles. In FMS and CMP, it is often stuck, according to some authorities.
Another explanation for these lumps is a condition called Dercum's disease.
Diagnosis requires a history of at least three months of chronic pain in fatty tissue, either constant or recurring. Some articles add (1) generalized obesity, which is not always present (2) asthenia (loss of strength) and excessive fatigue and (3) mental disturbances, including depression, confusion, emotional instability, epilepsy, and dementia. Many people with Dercum's report depression, occasional confusion (often called ``brainfog'') and memory problems.
Fortunately epilepsy and dementia seem to be quite rare. Much of the literature reports that Dercum's occurs most often in obese postmenopausal women. However, it does occur in teenagers and young adults, and about one in twenty patients are male. While weight gain is common, there are many people with Dercum's who have never been overweight. Losing weight will not decrease the pain or the size of the lumps.
Other diseases which may be confused with Dercum's include familial multiple lipomatosis, which is an inherited condition of usually non-painful lipomas, lipodystrophy, and Madelung's disease (also known as multiple symmetric lipomatosis, among other names). In those conditions some lipomas (abnormal growth of fatty tissue) may be painful because they press on nerves, but most are not.
In Dercum's disease most or all lipomas and other fat deposits are tender or painful, with the pain often increasing over the space of years. In particular, bumping a Dercum's lump or lipoma usually hurts, and pinching one usually hurts a lot, much more than one would expect. Sometimes lipomas in Dercum's are angiolipomas - lipomas which contain many blood vessels.
Painful fat can occur anywhere on the body, including the head and neck. Some people have tender or painful fat deposits literally from the top of their head to the soles of their feet. They are almost always in the subcutaneous fat layer, although it seems that at times they can invade other tissues. It appears that not a lot is known about how often that happens.
Dercum's has been classified into three types, based on the location and character of the painful fatty tissue. One can have a mixture of two types, such as type 2 and type 3. These are:
Type III, or the lipomatosis, nodular type, with intense pain in and around multiple lipomas, sometimes in the absence of general obesity; lipomas are approximately 0.5-4 cm, soft, and attached to the surrounding tissue.
Many patients with type III Dercum's report small rubbery nodules, which feel rather like corn or marbles under the skin. These often grow together into chains or clumps of lumps. These seem to occur most often in the arms, abdomen, and rib area.
The pain from Dercum's disease is often described as aching, burning or stabbing. Pain is common when a lipoma is bumped, pressed, or pinched, but can occur at any time. Sometimes even the lightest pressure can be painful, and only loose clothing can be tolerated. Pain can also be felt in the skeleton, as well as the fatty tissues.
The intensity of the pain varies from mild discomfort to excruciating pain. Pain often increases during menstruation, and decreases with warmth and high barometric pressure. Infections often make the pain worse. Stress, both physical and psychological, appears to make the symptoms of Dercum's worse. Unfortunately, just having Dercum's disease adds a lot of stress to life.
Other problems which commonly occur with Dercum's disease include the following.
Swellings that appear and often recede for no apparent reason. The swellings can resemble retained water, but they are non-pitting. That is, firm pressure by a thumb doesn't cause a pit that slowly becomes level. These swellings can leave the skin loose and inelastic (saggy skin, or pendulous skin folds), or hardened. In some cases it appears that as or after the swellings subside, adipose tissue (fat) increases under the skin, and at times nodular lipomas can be felt later.
Sleep disturbances and difficulty getting to sleep are common. Many patients find they need ten or more hours of sleep each day to function. Missing sleep can make the pain worse, and more pain makes sleep even more difficult.
Numbness, tingling and burning in the limbs, particularly the hands and feet. This seems to occur when a lipoma presses on a nerve. It can be constant or only noticed when the limb is in certain positions. It can disappear without treatment at times, presumably when temporary swelling is putting additional pressure on the area. This seems to be relatively rare, however. In most cases it won't subside without removal of the offending lipomas.
Thyroid problems may occur. This is most commonly an underactive thyroid, but overactive thyroid has also been noted.
Other problems are also reported, such as fibromyalgia, carpal tunnel syndrome, tendonitis, irritable bowel, and pain in the tailbone and vulva.
Pain in the fatty tumors lasting for at least three months. Often obesity occurs in a short period of time. But there is also a type of Dercum's disease that can occur with normal weight. The pain in fat and skin can be very intense, and can be described as aching, stabbing, smarting or burning.
Swellings consisting of irregularly shaped soft fatty tissue deposits may occur in many areas of the body. These deposits may spontaneously disappear, leaving hardened lumpy or rope-like tissue or pendulous folds of skin. The pain is chronic and increases with the years, but varies much in cycles. It can exist in practically the entire fatty tissue layer, but most commonly affected are the knees, trunk, forearms and thighs, sometimes sparing of the face and hands.
Severe asthenia (weakness)has been emphasized as a feature by some. The pain is spontaneous and increases powerfully even at gentle touch, and massage can feel unpleasant. Some affected individuals may experience depression, lethargy, and/or confusion. Lipomas, "fatty tumors " can be felt in the fat, they are intensely painful, and usually harmless, unless a tumor moves to the lung or heart which can be fatal.
Other common symptoms are:
* Various areas of the body may swell for no apparent reason. The fingers becomes clumsy, a person may drop things and sometimes the fingers go numb.
* Disturbed sleep, many have difficulties going to sleep because of the pain, but other forms of sleeping disorders also occur.
* General fatigue, worsening with even mild activity.
* Tendency to become black and blue; this seems to arise spontaneously or after alleviated blow.
* Stiffness after resting especially in the mornings.
* Skeletal pain in wrist, elbows, hips, tail bone and the long bones of the arms and legs.
* Headache, usually a combination between tension headache and classic migraine.
* Memory lapses and concentration difficulties making it difficult to learn new things and to accomplish intellectually demanding jobs.
* Feeling hot is often felt by the patients, some have 37.5 to 39 Celsius degree fever several weeks in a row, with increased pain and incapacity to work as a consequence. The reasons are unknown.
* Tenderness under the feet, akin to walking on glass.
* Tenderness in the skin, difficulties in wearing tight fitting clothes or taking a shower.
* Infection sensitivity. Frequently increased pain during infections or active allergy attacks.
The pain seems to depend on the temperature and the weather and decreases normally at dry heat. Warm baths have a positive but temporary impact, though some patients do not tolerate heat. Generally increases pain in conjunction with menstruation. Sexual relation problems can arise because of the pain.
Dercum's pain always exists, regardless if a person is asleep or awake. The diagnosis of Dercum's disease implies a long, chronic pain syndrome of debilitating nature. The pain can make it difficult to: walk, drive a car, open the water tap, lift items from shelves, carry bags, open heavy doors, vacuum, hang laundry, wash floors, wipe windows etc.
Causes
The causes of the disease are poorly researched. The symptoms and the lack of treatments can seriously affect the quality of life. Since the disorder does not show on the outside it can be hard for others to see the level of difficulties and discomfort the patient experiences. More than half of the patients are unable to work.
The disorder can grow slowly for many years or very quickly because of external stress, such as: surgery, pregnancy or flu. Dercum's disease is thought to be inherited as an autosomal dominant genetic trait, particularly strong in the line grandmother-mother-daughter. According to the latest research, Dercum's disease is an auto-immune disease such as rheumatism, and not a metabolic disturbance, as was believed earlier.
Diagnosis
A diagnosis of Dercum's disease is based on what the patient tells and what the doctor finds at his examination. There are no tests to take, but some blood samples can show signs of infection and/or that the immune system are very active. The doctor can also take blood samples in order to exclude other diseases. The knowledge about the disorder is not well know and many patients are poorly treated.
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Melanie Reber
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Dercum disease - also known as Adiposis Dolorosa, Anders' syndrome and Dercum-Vitaut syndrome - is a rare condition that is characterized by multiple, painful fatty lipomas (benign, fatty tumors) that occur chiefly in post-menopausal, obese women of middle age. However, although it is 20 times more common in women, 16 percent of the reported cases are males and it can also occur in people who are not obese
The lipomas are located primarily on the trunk region and on the extremities close to the trunk. Unlike ordinary lipomas, there is also pain that can be severe and sometimes debilitating. Dercum disease is a chronic condition, meaning that it is a long lasting condition. In addition, it tends to be progressive.
What are the symptoms of Dercum disease?
This syndrome consists of four cardinal symptoms: (1) multiple, painful, fatty masses; (2) generalized obesity, usually in menopausal age; (3) weakness and fatigability; and (4) mental disturbances, including emotional instability, depression, epilepsy, confusion and dementia.
The pain can last for hours, can be paroxysmal (occurring only at certain times) or continuous, and worsens with movement. Dercum disease is often associated with generalized weakness, depression, and irritability. The condition can also be associated with early congestive heart failure, myxedema (a condition associated with severe hypothyroidism), joint pain, paroxysmal flushing episodes, tremors, cyanosis (bluish discoloration of the skin), hypertension (high blood pressure), headaches, and epistaxis (nosebleeds).
What causes Dercum disease?
The understanding of the cause and mechanism of Dercum disease remains unknown. The origin of the pain is obscure, and the disease is better known as a description of its symptoms rather than as a physiologic or metabolic process. The fatty deposits (lipomas) cause nerve compression and result in weakness and pain.
Some cases reported in the literature have suggested possible causes for Dercum disease, such as the use of corticosteroids, a disturbance of endocrine function, or a genetic cause since it seems to run in some families. Some researchers have suggested that Dercum disease is an autoimmune disorder (a condition that occurs when the body's immune system attacks normal, healthy body tissue). However, no single cause has been pinpointed.
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Melanie Reber
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A case of adiposis dolorosa: lipid metabolism and hormone secretion. Taniguchi A, Okuda H, Mishima Y, Nagata I, Oseko F, Hara M, Otsu A, Kataoka K, Kono T, Imura H Int J Obes 1986; 10(4):277-81.
Abstract The present report describes a 53-year-old non-obese man with adiposis dolorosa whose pain was dramatically relieved by the intravenous injection of lidocaine. The patient showed a paradoxical response of growth hormone to thyrotropin-releasing hormone. In addition, in-vitro studies on adipose tissue metabolism revealed the reduced glucose conversion to neutral glycerides in painful adipose tissue. These abnormalities may be related in some ways to the pathogenesis of this disorder.
...
[Dercum's syndrome of infectious-allergic genesis] [Journal Article] Nikolaichuk LV, Razuvaeva AA Vrach Delo 1968 Jul.:132-4.
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Melanie Reber
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The weird thing for me, is that I fall under the category of the non-obese patient. These lipomas popped up while I was in an anorexic state actually.
The only comment that my former doc had was that Babs loves lipomas! Hmmmm.
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Hi Melanie - I just said oh no when I saw this topic. It's actually the health topic I started with initially, with one lipoma on my leg, that I went internet surfing on.
There is an endocrinologist researching to get to the bottom of this mystery, and I can say her name. It's Dr Karen Herbst, at the VA hospital in San Diego. [email protected]
There are also lipoma chatsites online.
I am successfully treating some lipomas I have with what's helping some of the lipoma patients, via Dr Herbst's research -
noni juice and grapeseed extract capsules. Both are antioxidants. I do a little of both daily, and this combo shrinks the lipomas!
It seems that people can have lipomas and not have Lyme, and then there are those of us with both.
I don't think she's figured it out yet, but she's working on it, including biopsying tissues. I actually sent her tissues from my lipoma surgery but she didn't find any ketes.
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Melanie Reber
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Robim! I was hoping that you would show up to add your input...and here you are! Thanks so much for Dr. Herbst's contact info, it is exciting to know that someone is actually looking for answers on this!
Were your lipomas painful too? I seem to recall that they weren't, but could be mistaken with memory.
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Hey - mine are itchy, not painful. Are yours all painful, or also itchy?
Ok - this is happening tomorrow! Monday, March 23 - an episode of "The Doctors" show, NBC, 1pm, so I understand from the lipoma sites - Dr Herbst is going to be on the show.
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Melanie Reber
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Wow- great news...I need to find my post-its!
Yes, mine are always painful when manipulated and some are just painful all the time. It is an intense sharp, burning, aching, something is scratching me from the inside sort of thing.
There is no itching involved for me...so sorry you are dealing with that.
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Tincup
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Member # 5829
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Lumpy bumpy...
You are doing a lot of research, aren't you.
Thanks for sharing it with all of us.
Just so you know... I have had surgery for at least 4 of these bad boys.
No, 6 of them actually... at least 6.
Two have returned (one recently) .. one of them that was originally the size of 1/2 of an orange... and is much deeper now and getting big again, darn it all...
The doc noticed it a while back when I mentioned pain in the area.
One stays there all the time and bothers me some but not dreadfully.
And a small one the size of a pea... that just stays there all the time not bothering anything, unless I bump it.
And.. I just found another NEW one two days ago.. maybe the size of about 1/2 a golf ball. It is in a weird spot... so hard to tell how big it is..
And if I pinch it trying to feel how big it is.... I want to smack myself for doing so. Youch!
I really don't think there is a new disease called Dercum.
My thought is Mr. Dercum... well here you go...
1. Addison disease - Thomas Addison
2. Alzheimer disease - Alois Alzheimer
3. Bernard syndrome - Claude Bernard
4. Cori disease - Carl Ferdinand Cori
5. Cushing's disease - Harvey Cushing
6. Hodgkin's disease- Thomas Hodgkin
7. Parkinson's disease - Dr. James Parkinson
8. Von Hippel-Lindau disease - Dr. Eugen von Hippel
9. Wilms' tumor - Dr Max Wilms, a surgeon
10. Wiskott-Aldrich syndrome - Alfred Wiskott, Robert Aldrich
Me thinks he didn't know better.. and thought he discovered something rare.
It is a Rheumatologist's dream to name a disease after themselves.. and some of the other docs too.
Anyhow.. rather than having 49 freaky diseases.. my bet is you only have 43.
Hope you are doing ok dear California dreamer. How about another road trip?
posted
Hi TC - the one I had surgery on just kept growing too, and I didn't think there was going to be anything I could do about it,
until Dr Herbst's research came up with the easy-to-do noni juice and grapeseed extract capsule regime - compared to the other things we have to do, this one's a piece of cake.
So I recommend both of you - Melanie and TC - trying the experiment. I take a little bit of noni juice with a grapeseed extract capsule -
I don't even take the whole capsule; I open it up and take partial.
I do this twice a day. The noni juice tastes like sludge, so I usually drink a pleasant-tasting juice right after.
I think it took a couple weeks for me to see that my lipomas were definitely shrinking.
I think there may be some more recommendations now, too, something about a horsetail chestnut recommendation? We could check with Dr Herbst for the latest news.
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Tincup
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Interesting.
I'd not like surgery... again.. so if there is something out there that might work.. I'm game.
Only problem...
I am allergic to grapes.
I know.. stupid, huh?
So would that be a problem.. taking grape seed extract?
posted
Hi - I suppose it would be best to check with Dr. Herbst on that question, TC. She's very nice and will email. Maybe she might know a substitute?
I looked it up - says it's derived from whole grape seeds - an anti-oxidant - with oligomeric proanthocyandin or OPC for short - that's what my bottle says, too - OPC + 95 is what it's called, by Jarrow.
Polyphenols in grapes reduce inflammation and interfere with cell proliferation - ie antitumoral.
Online says it stays in the body for three days, is 20x stronger than Vit C and 50x stronger than Vit E.
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Melanie Reber
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Lethal infection by a previously unrecognised metazoan parasite The Lancet Volume 347, Number 9018 29 June 1996 M�nica Santamar�a-Fr�es, Luis Felipe Fajardo L-G, Mitchell L Sogin, Peter D Olson, David A Relman
Summary Background New microbial pathogens or variant clinical manifestations of known organisms may be first found in immunodeficient patients. An HIV-infected man developed a rapidly-enlarging abdominal mass, suggestive of a neoplasm, that subsequently invaded his liver and caused death. Initial studies showed unusual tissue morphology that could not be matched with any known disease process.
Methods Tissues obtained from biopsy at laparotomy and necropsy were studied by light microscopy, immunohistochemistry, electron microscopy, and broad-range ribosomal DNA-amplification and sequence analysis.
Findings Tissue lesions were characterised by peculiar cytoplasmic sacs containing minute cells with very prominent nucleoli. The pathological process was recognised as a parasitic infection, although its features were different from those of any known eukaryotic pathogen. Phylogenetic analysis of a 357 bp 18S rDNA sequence amplified directly from the involved tissue indicated that the causative agent was a previously-uncharacterised cestode.
Interpretation Fatal disease produced by this newly recognised cestode may not be limited to immunodeficient hosts. Awareness of this metazoan infection may allow early diagnosis--by morphology and DNA sequence analysis--and perhaps successful treatment of subsequent cases.
Introduction HIV infection and AIDS have drawn attention to a number of previously unknown opportunistic infections. Some of the infectious agents have resisted classification or propagation in the laboratory. Parasitic infections contribute to the morbidity and mortality associated with HIV infection1,2 and atypical parasite behaviour and clinical presentations have been associated with immunosuppression.3,4 We encountered a micro-organism that caused a fatal illness in a patient with AIDS. This organism resisted identification until analysis of a small subunit ribosomal DNA (ss rDNA) sequence from infected tissue, indicated that the pathogen was a previously-uncharacterised plathyhelminth, probably a cestode.
Patient and methods
Clinical history A 44-year-old man with HIV infection for 5 years and a recent diagnosis of AIDS (CD4+ cell count: less than 100310-4/L) was admitted to hospital in March, 1994, with a 2-month history of abdominal and low-back pain, weight loss, night sweats, and fever. During the previous 5 years, he had several upper-respiratory tract infections and episodes of diarrhoea but no specific opportunistic infection. Stool examination on two occasions was normal. Current medications were zidovudine, dapsone, and pentamidine. He had a previous history of hepatitis B infection and treated syphilis. He had been in a monogamous homosexual relationship for 18 years. He worked as an accountant, lived in the San Francisco Bay Area, and had never travelled outside the USA. He went camping in the area in which he lived. He had two dogs with which he had close contact.
On admission he was febrile (39�C). His abdomen was soft and non-tender; a periumbilical 8310 cm mass was palpable. An abdominal computed tomogram (CT) scan showed para-aortic, paracaval, and mesenteric nonhomogeneous lobulated masses, up to 9 cm long in their greatest dimension. A CT-directed biopsy yielded no diagnostic material. Colonoscopy and biopsies of rectum and terminal ileum were normal. The patient had an exploratory laparotomy and biopsy of the mesenteric mass 1 week after admission.
Because he was presumed to have a protozoan infection, metronidazole was started, but discontinued after 7 days due to intolerance. Severe abdominal pain persisted. He developed anaemia (Hb 9�5 g/dL) and intractable nausea and vomiting with dehydration. He progressively deteriorated, and died 9 weeks after the laparotomy.
Investigations Morphology Light microscopy and immunohistochemistry of paraffin-embedded samples from biopsy and necropsy material were done, and a biopsy sample was examined by transmission electron microscopy.
Results
Morphology The open-biopsy material of the mesenteric mass consisted of dense fibroadipose tissue within a rim of lymphatic tissue with an extensive inflammatory reaction characterised by fibrinous exudate, macrophages, and scattered groups of neutrophils forming microabscesses. There were no granulomas or eosinophils.
Figure 1: Paraffin section showing several parasitic sacs
Their wall (shell) stains poorly, contains few nuclei and varies considerably in thickness. The profiles of the sacs are oval, flask-shaped, or elongated. All sacs contain numerous cells which do not completely fill the lumina. In this field there are few inflammatory cells. Hematoxylin and eosin. 3320.
Randomly dispersed in this stroma were numerous nests, or sacs, of the microorganism (figures 1 and 2). The sacs measured 85 �m in average diameter, were oval or flask-shaped, and composed of an outer amphophilic shell (wall) that stained weakly with hematoxylin and eosin, and a central cavity containing characteristic cells. These cells had a mean diameter of 6�7 �m; their cytoplasm was dense and their most prominent feature was a small spherical nucleus (2 to 4 �m; clearly smaller than most human nuclei) with a very large round nucleolus.
Some parasitic cells were multinucleated. A few sacs had ruptured and their cells were loose in the surrounding stroma. Although invasion of the sacs by histiocytes or neutrophils was seen, phagocytosis was not.
Figure 2: Portion of a parasitic sac
The gray-blue shell is acellular in the upper and right fields and contains some nuclei in the lower right. The peculiar cells with round, prominent nucleoli are concentrated on the inner aspect of the shell. Notice marked variation in cytoplasm density. Epon section stained with toluidine blue. 3800
The possible human origin of these cells was explored with immunohistochemical reagents for normal or neoplastic human antigens, including cytokeratins, human chorionic gonadotropin, alpha fetoprotein, epithelial membrane antigen, S-100 protein, vimentin, desmin, and multiple lymphoid markers. All of these markers were negative. The cells did not react with the usual stains for bacteria (such as Gram) or fungi (silver methenamine, Gridley etc).
They were acid-fast negative (Ziehl-Neelsen) and did not contain acid mucopolysaccharides (with Alcian blue at pH 1�5). Although the cells were periodic acid-Schiff (PAS)-negative there was abundant PAS-positive and diastase-sensitive amorphous material, presumably containing glycogen, among the cells.
Figure 3: Ultrastructure of the large (upper left) and small (lower field) parasitic cells described in figs 1 and 2
The large--presumably immature--cell has small, inconspicuous mitochondria (wide arrows) and multiple flat saccular structures with septations (long arrows). In the smaller cells--presumably older--the saccular structures have become thin channels and the cytoplasm is condensed. Uranyl acetate and lead citrate, 36250. The inset shows a section of the shell, made of cytoplasm containing a few mitochondria and a septated flat saccular structure. The elongated microvilli (mv) are seen on the outer, convex, aspect. Uranyl acetate and lead citrate. 315 000.
Electron microscopy of the biopsy sample showed that the wall of the sacs was composed of cytoplasmic material containing some glycogen and a few nuclei (figure 3). The outer surface of the wall was studded with a continuous layer of microvilli, while the inner surface projected lamellipodia toward the lumen. Inside the sacs were the minute cells seen by light microscopy.
Those cells in the periphery, between lamellipodia, seemed to originate from the wall and often were continuous with it. They had loosely distributed, small mitochondria and were larger than the cells closer to the centre of the sacs. Those cells in the center had denser cytoplasm, suggesting a process of maturation and/or senescence from the periphery to the centre of the sacs. All cells lacked rough endoplasmic reticulum, phagolysosomes, and junctional complexes (figure 4). Neither cell wall nor chloroplast were seen. Although these features suggested a metazoan parasite, there were no structures such as eggs, tegument, scoleces, or cilia.
Figure 4: Three-dimensional reconstruction of a parasitic sac--sectioned in the middle--based on light and electron microscopy
The cut surface is facing up, while the external surface, studded with microvilli, is partially seen at the bottom. The size of the microvilli has been exaggerated to make them visible at this magnification. The (cytoplasmic) wall contains some nuclei (right and top) and a few vacuoles (left). Within the sac are the characteristic cells, which appear to originate in the wall, detach from it and migrate toward the lumen, becoming smaller and denser in the process. The irregular projections of the wall's cytoplasm toward the lumen (lamellipodia) may serve to support the cells, or may represent the sites of separation of the cells from the common cytoplasm.
Necropsy less than 6 h after death showed large mesenteric and retroperitoneal, lobulated tan masses, up to 20 cm in greatest dimension (figure 5). Smaller nodules were present in the diaphragm and lower retrosternal soft tissue. The liver, which was markedly enlarged, had bulky, irregular tan lesions that involved approximately 75% of the parenchyma. The abdominal masses and the liver had extensive necrosis and contained numerous plastic sacs, most of which were ruptured.
Rare cytomegalovirus inclusions were observed in human cells within the mesenteric mass. There was severe bronchopneumonia. No evidence of cancer was found. Cultures from blood, liver, and mesenteric masses were negative for bacteria and fungi, except for light growth of Candida glabrata from one of the mesenteric samples.
Figure 5: Section of the retroperitoneal mass
This large tan-white loblated tissue is composed of matted lymph nodes. The gross appeared closely resembles that of a neoplastic process such as a lymphoma.
Small subunit rDNA analysis
A PCR product of approximately 400 bp was consistently detected in digests of diseased liver tissue with reactions using broad range Eukarya ss rDNA primers. No other PCR products were detected. On the other hand, digests of normal portions of liver from the same patient only yielded an approximately 1�8 kb PCR product (data not shown). A 1�8 kb DNA band would have been expected from amplification of human 18S rDNA with these primers.
The disease-associated PCR product contained 357 bp, excluding the two PCR primers. This 357 bp sequence corresponded to the ss rDNA of a previously-uncharacterised metazoan (GenBank accession number U 58674). At approximate position 360 within the ss rDNA of the most closely-related organisms, there is a region in which 14 out of 15 nucleotides in a reverse complementary orientation match the 3' end of primer 1520 RPL, suggesting that 1520 RPL mispriming led to the amplification of this unexpectedly small DNA fragment. Parsimony, distance, and neighbour-joining phylogenetic analyses indicated that the case parasite is most closely-related to the cestodes (figure 6); bootstrap analysis strongly supported this association.
Figure 6: Phylogenetic tree based upon parsimony analysis of partial small subunit rDNA sequences
The analysis suggests that the case parasite is a cestode. This dendrogram represents the best tree among 100 bootstrap replicates. The percentage of the 100 resamplings that corroborate the topology is given at branch nodes (only values greater than 50% are displayed).
These results and the morphological data, suggest that the nests of cells represent a tissue-invasive larval stage of a cestode-like organism. Given the relatively few cestode ss rDNA sequences that were available for our analysis and the paucity of sequence data from the case parasite, we could not determine precise evolutionary relationships between this parasite and other cestodes.
Discussion
This patient had a progressive, tissue-destructive parasitic infection. Despite rigorous histological examination, the nature of the pathogen could not initially be identified.
Efforts to detect signature elements and compounds in the diseased tissues by energy-dispersive and lipid-profile analysis (data not presented) failed to provide specific clues. Small subunit rDNA sequences allow the inference of phylogenetic relationships without reliance on cultivation or growth-based phenotypes. For this reason we amplified these sequences directly from infected tissue.
Although there are very few cestode ss rDNA sequences available, our analysis suggests that this parasite is a previously-unknown cestode.
The lack of sequence similarity of this parasite with previously-characterised organisms is consistent with its unique histologic features. We have found no reports of a human-associated parasite morphology or clinical course that resemble those described in this case. In fact neither we, nor any of the experts on human and veterinary parasitic diseases we consulted, have seen this micro-organism before. There is a vague similarity between this case and one reported by Connor et al in 1976 and interpreted as a possible embryonal stage of aberrant spirometra (sparganum).3
In one of their micrographs the minute cells and the enveloping sac slightly resemble our parasitic nests; other aspects, including the ultrastucture, are rather different. The morphology of this parasite suggests that it was in the larval stage.3,11 No evidence of maturation (no change in morphology) occurred in the 3-months between biopsy and death.
Assuming that this is a newly recognised human parasite infection, we could only speculate about the possible route of entry and its development within the host. Since the initially detected lesion was in the mesentery, infection through the mouth by eggs or larvae may have occurred, with subsequent penetration through the intestinal wall and dissemination into lymph nodes.
The infection may have occurred either from ingestion of contaminated meats, fish, crustaceans, etc, containing procercoid larvae (as in the case of sparganosis) or ingestion of eggs or proglottids as in the case of taeniasis.12
As for the source, we have considered the possibility that the dogs with which the patient was particularly affectionate (to the point of biting their paws and noses) may have harboured the organism. Although no parasites were found in the dogs faeces, this source cannot be ruled out. The sexual partner of this patient is apparently healthy.
From studies in mice it appears that helper T lymphocytes (especially the Th1 subtype) are important in the protective immunity against the cestode Hymenolepis nana.10 Thus, by analogy, this immunodeficient patient might have lacked selective protection against cestode infections.
Awareness of these unusual clinical and pathological features may allow early diagnosis and treatment in subsequent cases. Additional sequence-based studies may be necessary for the complete characterisation of this metazoan.
The authors greatly appreciate the expert opinions of the following persons: Jon Kosek, Michael Hendrickson, Tracy Tingle, Paul Basch, and Monte Laskosky (Stanford, CA); Daniel Connor (Washington, DC); Jack Frenkel (Santa Fe, NM); Daniel Gould (Fort Collins, CO); Eileen Johnson (Davis, CA); Govida S Visvesvara (Atlanta, GA) and David C White (Oak Ridge, TN). Helen Kwan, Kristine Yoder, Chris Morrow, and Donna Buckley provided technical assistance.
Supported in part by Veterans Affairs Research Fund FAJ004 (LFF), Lucille P Markey Charitable Trust (DAR), NIH Grant GM32964 (MLS), NSF (BSR-91-96213) (PDO), and University of Connecticut Research Foundation Grant awarded to C S Simon (PDO). DAR is a Lucille P Markey Biomedical Scholar.
Melanie Reber
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posted
Hormonal and metabolic study of a case of adiposis dolorosa (Dercum's disease). [Case Reports, Journal Article] Pimenta WP, Paula FJ, Dick-de-Paula I, Piccinato CE, Monteiro CM, Brand�o-Neto J, Kettelhut IC, Foss MC Braz J Med Biol Res 1992; 25(9):889-93.
A case of a 43-year-old nonobese woman with adiposis dolorosa (Dercum's disease) is reported. Muscle glucose uptake and oxidation before and after ingestion of 75 g of glucose were similar to control group values, although a greater insulin release (16,578 vs 6,242 +/- 1,136 microU/3 h) occurred simultaneously. In vitro studies of abdominal normal and painful subcutaneous adipose tissue of the patient revealed lower responsiveness to norepinephrine and lack of response to the antilipolytic effect of insulin in the painful adipose tissue (0.98 vs 1.43 microM FFA/10(6) cells at 5.0 microM of norepinephrine).
The disease was not correlated with the HLA system and there were no alterations in hormonal secretion at the pituitary, adrenal, gonadal, and thyroid levels. These findings indicate the presence of peripheral insulin resistance in this patient with adiposis dolorosa.Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I recently checked in with some of the folks on a lipoma chatsite, with the question as to whether any were aware
of some kind of mild injury occurring to the area prior to developing a lipoma.
Answers were usually yes! A bloodflow constriction, being bumped, variations of those sorts.
And for me, yes. My first one developed where my carry bags kept bumping against my upper leg.
Another where it had been difficult to draw blood. Another where a ring constricted a finger.
Something to think about, as in pay attention to any actions that could be bothering an area, and modify, if we can.
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Melanie Reber
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posted
Hey Robin, The problem with me is that I don't only have a few of these...I have several dozen and they are all very painful. So, I fit the profile of Dercums exactly. My doc also semi-confirmed this at my last apt.
What we didn't get an opportunity to talk about... is what do I DO about it. I SO want to just cut the most painful one out for a biopsy sooner than later. But my next apt. is a month away and these are spreading like wildfire.
Do you think that Dr. Herbst would have some tangible suggestions for me as to what I should do?
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Melanie Reber
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posted
up for robin?
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posted
Melanie.. I'm very sorry to hear that you have more to deal with..... hugs.....
There's a post over in General asking about Tincup's birthday. Do you know anything about it?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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klutzo
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posted
I have hundreds of these that developed all of a sudden in 1990, along with a 54 lb. weight gain in a few months without any extra eating. (I've been sick since 1986.)
I had one biopsied and they just told me it was a lipoma and nothing to worry about.
Mine are very small and hard, and the backs and sides of my thighs are nothing but masses of them. The rest are on my stomach.
Mine don't hurt unless you press on them. I just assumed the pain was fibro, which was my dx back then.
I have all of the other symptoms listed, but can't say I have "severe pain". I too, blamed the bottom of the foot pain on Bart.
Very interesting. Thanks for posting all this info. I already take GSE, so am not sure there is much else to do.
klutzo
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Melanie Reber
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posted
Hey Miss Toots, Thank you dear one. I do know that today is not THE day...but why not celebrate anyway? She is worth it! And I am certain you wouldn't have to twist her arm to get her to eat the cake and especially ICE CREAM!
Hello Klutzo, My heart surly goes out to you. This is by far the most bizarre and painful thing I have yet to deal with. I first learned about this on a Fibro site, so there IS a definite connection...it is just that no one seems to understand what that is yet.
The usual action as I understand it is to throw steroids at the problem...well, we both know that isn't going to happen.
I seem to find more everyday now. The latest discoveries are in my arms, armpits, along my spine and breasts. I can't even lay down comfortably any longer, as my ribs push on them and it is so very painful.
I'll continue with the research as much as I can and post here when I find anything pertinent. Take good care of you. M
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Melanie Reber
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Atypical dermatological manifestations of Lyme borreliosis
"4. Exceptional skin manifestations described during LB
Hassler (4) has reported an association between LB and involvement of subcutaneous tissue (Pfeifer-Weber Christian disease) and he has been able to demonstrate the presence of Borrelia in the affected skin even after several antibiotic treatments."
...
Pfeifer-Weber-Christian disease
Also known as: Weber-Christian disease Weber-Christian syndrome Pfeifer-Weber-Christian syndrome
Associated persons: Henry Asbury Christian Victor Pfeifer Frederick Parkes Weber
Description: A skin disease characterized by relapsing fever and panniculitis, and development of crops of painful subcutaneous fatty nodules, resulting in atrophy of the subcutaneous fatty layer of the skin. The nodules vary in diameter from 1 to 12 cm.
The trunk and extremities, particularly the thighs and legs, are most frequently affected. Hands, face, and feet usually spared. Occurs in every age group and either sex, but usually affects women between the second and fourth decades of life. Etiology unknown.
Pfeiffer in 1892 first described multiple areas of atrophy in subcutaneous fatty tissue; Weber in 1925 called it "relapsing, non-suppurative panniculitis." Christian in 1928 pointed out its febrile character.
Melanie Reber
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posted
Panniculitis is a group of diseases whose hallmark is inflammation of subcutaneous adipose tissue.[1] Symptoms include tender skin nodules, and systemic signs such as weight loss and fatigue.
Restated, an inflammatory disorder primarily localized in the subcutaneous fat is termed a "panniculitis," a group of disorders that may be challenging both for the clinician and the dermatopathologist.[2]:487
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lymeparfait
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posted
Mine have progressively gotten worse over the last year, with lyme treatment.
I have an intuition that they are related to not being able to detox. As I pick up fluid, I seem to get these. I am not heavy, and found my first lump 16 years ago during my pregnancy, in my abdomen. I have at leasat 50 now.
My lumps feel like gel caps under the skin, they are palpable. Every MD I"ve ever shown them to, has no idea what they are. My OBGYn found one in my breast, and she wanted me to do a biopsi. When I went in to get it done, it went away. So no cutting.
Mine come and go, but now mostly stay with me.
They hurt when I get a massage, and my masseuse says she feels them on lyme and fibro clients. She was actually able to push them with lots of painful pressure and release some of them. The lumps are smaller after the massages, but can easily return. This is very painful, but I thought I"d try it.
Also, I just found out that I am one of many lymies that has KPU. so I wonder if this is related. Does anyone else have this gene for poor detox, or kryptopyrroluria?
If I find good results with reduced lumps from my new KPU protocol, I will post.
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Hoosiers51
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posted
lymeparfait,
I just want to share something with you that I also shared with Melanie.
My massage therapist has mentioned adipose to me before, saying she was surprised I don't have any because lots of people with Lyme do have it.
When I started asking her more about it, she said it is just your body's way of trying to handle too many toxins.
She said what she would do for it personally is to first make sure the colon is clean to prep detox, because that will encourage the body to remove toxins better. (so "up" your fiber, make sure things are moving great down there)
Then, she said maybe find a really good general detox supplement...she mentioned one from Metagenics called Ultra Clear Plus (note: if my memory serves me right, this is the one she recommended). But I'm sure you don't have to use this specific one, but like I said, it was her recommendation (not making any money off these supps either).
Then, she said one other good thing to do would be to do Castor Oil Packs on the abdomen, every night for 2 weeks straight (but not during menstruation).
If you google Castor Oil Packs you will start to read about the benefits.
I have done them before, and they are pretty messy and inconveinent, but sometimes simple solutions like castor oil work better than anything else.
I think the oil penetrates the skin as you sleep, and it helps break things up in the body. It also has benefits to the lymphatic system, the castor oil packs. It helps de-clump the clumps in the lymph fluid.
I am just repeating everything she told me. She is a masseuse, but she has spent decades learning about alternative medicine at various centers. She has also worked on so many people, that she notices things like adipose in people, so I trust her judgment.
Might as well give it a shot and see if any of it helps. The adipose is primarily a detox issue but it is good that your body is at least finding SOMEWHERE to put the toxins (because other areas are too bogged up already according to my massesuse). Too bad they have to be painful and annoying though.
She said they are common with her Lyme clients (even younger ones), and also she sees them a lot in the elderly because at that age there are only so many places excess toxins can go.
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lymeparfait
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posted
Thanks Hoosier...I will try your suggestions. LP
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Hoosiers51
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posted
I looked up that Metagenics Ultra Clear Plus, and I will paste some of the info on it so you can get an idea what it does and what's in it.
Also, I bought my Castor Oil and the flannel sheet for the "pack" at http://www.iherb.com . I would buy the "large" size flannel so you fold it a few times and still be able to put it over the entire abdomen. I usually put a large garbage bag on the bed and then a towel over that to save my sheets. Then you wrap yourself in plastic wrap (weird, I know).
I would not sleep with an electric heating pad on myself all night long because some people's bodies do not respond well to having electricity that close for that long. My masseuse said you can use a hot water bottle or microwavable bean bag heating thing for the first 30 min or so if you want some extra heat besides what your body provides.
Here is the Ultra Clear Plus info:
UltraClear Plus is a medical food formulated to provide enhanced, specialized nutritional support for patients with impaired or compromised detoxification capacity, and includes macronutrients and micronutrients to address altered energetic function and liver detoxification.
UltraClear Plus provides the same great macro- and micronutrient base formula and benefits as UltraClear, but with added support for those who are imbalanced detoxifiers people with low Phase II activities.
Imbalanced detoxification may be due to genetic predisposition, a history of chronic nutrient insufficiency, and/or toxin overload, which can result in a buildup of reactive oxygen intermediates and a subsequent increase in symptoms and/or tissue damage.
UltraClear Plus features added glycine, taurine, sodium sulfate, and catechins from decaffeinated green tea to better support Phase II activities, and is safe for long term use in individuals with chronic exposure to toxins.
UltraClear Plus is an ideal detoxifier for those with health conditions such as:
# Alcohol/chemical dependency
# Atopic disorders
# Chemical sensitivity
# Chronic fatigue syndrome
# Fibromyalgia
# Food allergy
# Generalized arthralgias
# Migraine headaches
Ingredients: Servings (44g) per container: 21 2 Scoops (44 grams) contain: Calories 160 Protein 15g Carbohydrate 19g --Dietary Fiber 2g Fat 3g --Saturated fat** 1g --Trans fat 0g Cholesterol* 0mg Vitamin A (retinyl palmitate) 1,000 IU Vitamin A (beta-carotene) 4,000 IU Vitamin C (as sodium ascorbate) 300mg Calcium (as calcium citrate, phosphate) 200mg Iron 0.5mg Vitamin D 35 IU Vitamin E (as d-alpha tocopheryl acetate) 42 IU Thiamin (as thiamin hydrochloride) 2mg Riboflavin 2mg Niacin (as niacinamide) 7mg Vitamin B6 (as pyridoxine hydrochloride) 3.4mg Folic acid 80 mcg Vitamin B12 (as cyanocobalamin) 3.6 mcg Biotin 135 mcg Pantothenic Acid (as D-calcium pantothenate) 36mg Phosphorus 200mg Iodine (as potassium iodide) 53 mcg Magnesium (as magnesium citrate) 200mg Zinc (as zinc citrate) 10mg Copper (as copper gluconate) 1mg Manganese (as manganese gluconate) 1mg Chromium (as chromium chloride) 50 mcg Sodium 70mg Potassium (as potassium phosphate, iodide) 420mg L-Glycine 1600mg L-Glutamine 100mg L-Cysteine 15mg L-Lysine 35mg L-Threonine 35mg DL-Methionine 50mg Sulfate (as magnesium sulfate) 20 mg Catechins (from decaffeinated green tea extract) 15mg Other Ingredients: Rice protein concentrate, rice syrup solids, natural flavors, magnesium citrate, L-glycine, dipotassium phosphate, olive oil, medium-chain trigycerides, calcium citrate, silica, ascorbic acid, dicalcium phosphate, L-glutamine, zinc gluconate, DL-methionine, L-lysine HCL, L-threonine, d-alpha tocopheryl acetate, D-calcium pantothenate, decaffeinated green tea extract, L-cysteine HCL, magnesium sulfate, vitamin A (beta-carotene, retinyl palmitate), niacinamide, copper gluconate, pyridoxinde HCL, thiamin HCL, riboflavin, chromium polynicotinate, biotin, folic acid, potassium iodide, cyanocobalamin, and cholecalciferol. Formulated to exclude: wheat, gluten, yeast, soy protein, egg, dairy products, nuts, tree nuts, fish, crustacean shellfish or artificial colors, sweeteners or flavors.
Recommended Use: Adults: Blend, shake, or briskly stir two level scoops into eight ounces of chilled water or juice.
Note: **Saturated fat is contributed by the beneficial fat chain triglycerides which have recognized health benefits.
Warning: Excess vitamin A intake may be toxic and may increase the risk of birth defects. Pregnant women and women who may become pregnant should not exceed 5000 IU of preformed vitamin A (retinyl palmitate) per day. Keep this product out of the reach of children
*These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.
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Hoosiers51
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posted
PS---if you are taking Mepron or Malarone (maybe other drugs too like Bactrim?), be aware that the antioxidants in the green tea extract in that supplement will counteract what the Mepron etc is trying to do.
Green tea makes some drugs like Amox penetrate better but others like Mepron work worse, just so you are aware.
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lymeparfait
Unregistered
posted
Also, I did notice that many appeared in spots that I had hurt myself. One recent one developed on my calf when my car door accidentally hit the leg. Another on my arm, where I was hit hard by a tennis ball. And the one I"ve notice for many years, is above my left knee, where I always cross my right over the left knee.
I never recognized the connection before. Thanks, I will observe, and be more careful!
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posted
Yes, don't self-flagellate - a lipoma might result...
Melanie - I'd like to pm you but your inbox is full...
btw, my computer is being fixed right now so I have to go to the library - have less time to be online
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Melanie Reber
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posted
There she is! Hey Robin, I don't have it in me to clean house right now, but you can always reach me via LymeFriends,or through the email contact on the Memorial site linked below. Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
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posted
Weber-Christian disease and other forms of panniculitis
Author Richard S Panush, MD, Section Editor Robert P Dellavalle, MD, PhD, MSPH, Deputy Editor Paul L Romain, MD
Last literature review version 17.1: January 2009 | This topic last updated: August 15, 2007 (More)
INTRODUCTION -- Panniculitis is an inflammation occurring within adipose tissue. It can occur in the septae (through which course arteries and veins), lobules, or both. It is often associated with a variety of systemic diseases and clinical syndromes, and can be classified based upon pathologic, clinical, or etiologic findings [1-7]. We favor an empiric clinical classification (show table 1) for the following reasons:
* Pathologic changes have not been consistently characteristic of different entities
* Discussions of these entities have often been based upon longstanding unchallenged views of a largely anecdotal and descriptive literature
* Our understanding of these syndromes is limited
WEBER-CHRISTIAN DISEASE -- Weber-Christian panniculitis (relapsing febrile nodular panniculitis) is an infiltrative inflammatory disease of fat that usually occurs in young white females. It is characterized by tender skin nodules that are often associated with constitutional or other symptoms, such as fever, arthralgias, and myalgias [1-3].
Many investigators have suggested that Weber-Christian disease (WCD) is not a specific entity but rather a syndrome comprised of inflammatory panniculitides. These syndromes share many clinical, inflammatory, immunological, and pathological features [1,8].
Clinical manifestations -- Patients with WCD typically present with subcutaneous nodules that are located over the extremities; skin lesions can also occur over the posterior thorax, abdominal area, breasts, face, or buttocks (show picture 1) [1]. More unusual nodule locations include the abdomen (as an abscess), mesentery of the small or large bowel with bowel obstruction, lungs, scrotum, and cranium. WCD can present as a severe systemic illness leading to death from panniculitis involving the heart, lungs, liver, or kidneys [1].
The dermal lesions are typically tender and erythematous initially, and may develop a serous or serosanguineous drainage [1]. They often heal leaving an atrophic area, but not all areas of panniculitis result in atrophy.
Melanie Reber
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posted
Weber-Christian disease (febrile relapsing non-suppurative nodular panniculitis) (a case report). Singh NK, Singh DS. J Postgrad Med 1984;30:49-50
Introduction
Weber-Christian disease is a rare and poorly understood disorder of the adipose tissue.[9] It may be the results of several known and possibly many more unknown causes.[4] In 1925, Weber[11] first described a case as "relapsing non-suppurative nodular panniculitis" and Christian,[4] in 1928, added "febrile" to this designation. Subsequently, the eponym Weber-Christian disease was introduced. Rarity of this condition and good therapeutic response to corticosteroid prompted us to report this case and highlight the clinical and diagnostic features of this disease.
Case report
A 20 year old female was hospitalized with 12 days' history of high grade fever and multiple, painful nodules on the trunk and lower extremities. She also complained of pain in both the ankles and elbow joints for the same duration. On direct interrogation, she gave history of 2 episodes of similar illness in the past over a period of 2 years. Each episode lasted for about 1 month. She denied any history of abdominal pain.
Examination of the patient revealed a thin built lady having pulse rate of 120/minute, oral temperature of 1000F (I think this might be a typo!) and moderate pallor. There were multiple, tender, firm nodules of 1-2 cm in diameter, spread over the trunk and lower extremities. There was no joint swelling. Systemic examination was unremarkable.
Laboratory investigations revealed total WBC count of 13,000/cmm with differential leucocyte count of P-70%, L-27% and E-3%; Haemoglobin was 5.5 gm% and ESR-30 mm/hour (Wintrobe method). Tests for rheumatoid factor and L.E. cells were negative. Serial estimations of serum and urinary amylase were normal. Paper electrophoresis of serum proteins revealed mild. elevation of alpha-2 globulin. Barium meal contrast study of the upper gastro-intestinal tract showed no evidence of pancreatic malignancy. Biopsy from the skin nodule showed inflammatory cells in the fat tissue together with foci of fat necrosis [Fig. 1].
The patient had good therapeutic response with corticosteroids and other supportive measures. Prednisolone was given in a dose of 40 mg/day in divided doses for 1 week and then gradually tapered off over a period of 3 weeks. Two years follow-up information of the present case revealed no relapse of the disease.
Discussion
Weber-Christian disease is a rare disorder of subcutaneous fat tissue.[9] The exact aetio-pathogenesis of this condition is largely unknown.[4] Some of the aetiological factors incriminated are immunologically mediated vasculitis[4] and steroid withdrawl.[8] A number of cases have been reported with other disease processes e.g. systemic lupus erythematosus,[12] pancreatitis and pancreatic carcinoma.[7] In the case under report, no definite aetiological factor could be established.
Clinically, it is characterised by acute febrile illness associated with recurrent crops of multiple, tender, subcutaneous nodules or plaques occurring most commonly on the thighs and legs but may involve the arms and sometimes also the trunk and face.[9] Usually over a period of few weeks the nodules subside. The disease tends to recur at an interval of weeks or months. Rarely, visceral involvement may also occur which may prove to be fatal.[6]
Histopathological changes of subcutaneous nodules in acute stage of the disease comprise of focal necrosis of fat cells with infiltration by polymorphonuclear leucocytes and lymphocytes. Later on, macrophages invade the fat lobules.
Following the inflammatory phase, there is replacement of adipose tissue by fibrosis.[3] Rarely, there may be associated vasculitis.[10] Good therapeutic response with corticosteroids and ACTH have been reported by various workers.[2],[5] Present case also had favourable therapeutic response to corticosteroid and had no recurrence of the disease in a 2 year follow-up period.
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Melanie Reber
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posted
Well... Bicillin seems to make the alien natives very restless for some reason. Hoping it is helping somehow. Has anyone else tried Bicillin with this condition?
Either that, or the ongoing Mepron/ Doxy protocols are finally kicking up something. Posts: 7052 | From Colorado | Registered: Mar 2003
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
melanie-i couldn't read all of it but i have been dealing with what i call nodules -about the size of a large marble-for many years
sometimes they bother me more than other times
different docs over the years have felt them but surgeons always say they won't take them out
(a few did and they were fatty lipomas) in the beginning-but no one will touch the ones in my abd-under my ribcage that bother me the most
a neww llmd told me bart presents this way-mine did not show up on scan but he has had bart patients have "tons" of them have them show up on scan and after rifampin they went away
mine decreased and stopped causing problems after 2-3 months on rifampin...but 2 months after stopping it they started to come back-not as bad yet as before-but before i had them over 12 yrs
i related them starting to when i started taking a lot of ibuprofen for pain...but thats just me remembering and i'm really foggy
good luck figuring it out-i will be followong this thread
ps-none of my docs ever gave me a dx on them
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Melanie Reber
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posted
Thanks for the added input Kayak. I personally feel that many physicians are reluctant to diagnose because there is no known cause and no known cure at this time.
As you pointed out... some medications seem to help for awhile but these buggers always seem to return once those meds are discontinued.
My current LLMD was very familiar with Adiposis dolorosa (which tells me that she has seen it before)... but was not very helpful with offering suggestions for improving or eliminating the condition. Although, I must admit that in the hierarchy of things that were going wrong with me, this did seem to fall somewhere toward the bottom of the list.
I agree that Bartonella seems a likely culprit as we know that it does manifest with other nodule type presentations. Notoriously attacking the lymph system, muscular-skeletal and vascular systems. if that is the case here, perhaps the Doxy/Zith is stirring things up?
I'm very sorry you are dealing with this too but am pleased they have lessened in number and severity for you. The idea of Ibuprofen is interesting, I'll have to dig up old med records to see when I was on that in relation to noticing the onset of this condition.
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lpkayak
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posted
well-since i posted this morning i got results back from an ultrasound that they found something but don't know what so i have to have a cat scan-a yucky one where i have to drink the radioactive stuff...i hate doing that-i feel like i am killing myself on purpose...but they are looking for a bunch of stuff including a special skin cancer so i guess i have to go thru with it
it just never ends...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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I am successfully shrinking my lipomas by drinking a little noni juice 2x daily along with maybe about 50mg grape seed extract capsule amt.
If I don't do this, the lipomas grow. Instant feedback.
Noni and gse are anti-inflammatory antioxidants.
So the fat cells have a connection to this illness.
Where's Marnie when we need her?
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lpkayak
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posted
robin...did you mean grapefruit seed ? i have always felt better when i took noni but i am not taking it now...i seem to remember a bad experience with grapefruit seed...but it was a long time ago-probably worth a try. thanks.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bettyg
Unregistered
posted
my undiagnosed lyme hubby has lympomas galore on his entire body; really large, but he's never complained of them.
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lp, at first I thought the dercums site had said grapefruit seed, but I looked again, and it was grape seed.
I had a friend with me who wanted to make sure I knew the difference btn a grapefruit and a grape. One is bigger than the other, she said. I learned something that day.
grape seed extract it is.
betty, if your husband is up for the experiment, try it. I've never had an adverse reaction from the noni juice and grape seed extract capsules.
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Melanie Reber
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posted
...bringing this back up for some light reading for my next doc apt. :0
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payne
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Member # 26248
posted
whoa, I actually read this all and my memory is struggle to keep this intacked... Great read, and big thanks for the research, hope it enlightens all readers to push on.. with life and what human beings encounter. being attacked from within.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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lpkayak
Honored Contributor (10K+ posts)
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posted
im in the same place as i was in 2009 with this except they keep getting worse...i feel like some are 3 or 4 inches by 5 or 6 inches...but i have had more scans and ultrasounds and still no answers. sometimes they do the tests wrong (ie write up they examined worng side ) even tho i had huge lump outlined with marker from wher my primary saw it
sometimes i think they are large worms...someitmes lymphnodes...i think someday i will have an emergency surgery and they will find them...what ever they are. its hard to not think about cancer...so many yrs i have been trying to figure this out...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Melanie Reber
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posted
You are most welcome Payne.
LP, I am so very sorry that you are still dealing with this issue as well... I can completely relate.
So many mainstream physicians are just not familiar with the complexities of these diseases. For example, at my recent appointment with my PCP, I had her feel my tummy so she could 'see' what I was dealing with. She very casually said that they were only adipose deposits and that she saw them 'all the time'.
When I enquired as to why they would be so painful... she had no answers... but was also very quick to say that I couldn't 'just cut them all out'.
Thing is, I didn't say that I wanted to cut them all out, I only asked if it would be possible to biopsy the largest and most painful one. Then, she closed up tighter than a clam, and in effect, the appointment was over.
So very frustrating.
Thanks to Robin, I did go back and read the website of Dr. H who deals with this issue almost exclusively. You may find it enlightening as well?
posted
Anyone have these biopsied or an aspiration biopsy and have it come back other than a lipoma?
I have this on my torso although not painful and not large. I can get a plateau sign from the largest one when I am uber thin. I maybe have 6 or so total with just one on my lower back.
These have always been promptly dismissed by every MD.
Posts: 478 | From Third Coast | Registered: Feb 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you. im glad there is someone looking into this.
wow-i just went to the site...a lot of info and rsources
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I have these as well. They are small for me and painful to the touch. The more you touch, the more pain.
My sister got bit by a deer tick in the same neighborhood and she has them as well and one of hers is fairly large.
I love to fish and I have seen so many fish with worms and leeches on and in them. I've also seen organisms that form cysts in them as well and these remind me of that.
It feels like those spots have been invaded and there is something occupying them.
Posts: 2087 | From NY | Registered: Oct 2011
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Yes, Lymed... I have been saying for years that they feel like little aliens trying to scratch their way out!
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Hi everyone - I just saw that Melanie brought this thread back up.
Reporting in - the noni juice/grape seed extract capsule combo still works for me - completely shrinks my few lipomas. If I don't do this, the lipomas return.
Both of these remedies are anti-inflams.
My thinking is, if any of you who have just recently posted would like to email Dr Herbst (I think we can say her name here - she's not a Lyme doctor) and ask her for any updates on any possible easy ways to treat, and post back here, that could be most helpful...
Posts: 13116 | From San Francisco | Registered: May 2006
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey Robin, I tried contacting Dr Herbst recently... unfortunately there has been no reply. I imagine she gets many requests for information and at times is just as overwhelmed as we can be.
I asked specifically if she had linked this to any patients with Tickborne diseases and/or specicially Bart h. (mine always flare when I relapse hard with CSD)
I'll post back if I ever get a response. Or if I make any headway in my upcoming LLMD apt.
I just feel certain that there MUST be a connection here... as TC stated above - the similarities are just too obvious NOT to connect the dots!
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Bumping this back up to re-read... because it is really progressing for me... and I am still searching for answers.
In the last 2 weeks, I have developed a rather annoying and very inconvenient lump on the bottom of my left foot, between the ball and arch. At first I kept thinking that I had a rock in my shoe. Kept checking my shoes, my socks, etc., because I could not understand what the hell was annoying me so much.
It took awhile to come to my senses and realize that this was indeed yet another mysterious subcutaneous nodule and no matter how many times I re-checked my shoes... it wasn't going away!
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Mel .. Did you try the noni and grape seed extract?
I found out my second cousin has Dercum's and is in a lot of pain from it. He also has MCAS like I do.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hello Miss Toots,
Actually, no, I did not try that combination. I think at the time I was on so many things that I just couldn't comprehend adding anything else into the mix.
Wow, that is rather surprising about your cousin. Does he also have TBDs by chance? Sorry, but you are going to have to spell out what MCAS means for me.
Posts: 7052 | From Colorado | Registered: Mar 2003
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
OMGosh, I am convinced that I MUST have been re-infected while on a holiday break trip to Seattle in 2002. I was doing just fine(ish), and then all of a sudden, I came down with a flu-type illness on the trip, and then... well, everything just went to hell in a hand-basket after that.
*editing to add- while on that trip, I spent a few days roaming the area botanic gardens, including the arboretums. Yeah, big surprise there, right?
Thanks, I'm going to have to read up on MCAS, as I have seen that acronym thrown around a LOT, but have been too preoccupied with my own known issues to even want to consider yet another thing. Posts: 7052 | From Colorado | Registered: Mar 2003
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