posted
I understand that there are overlaps between symptoms of chronic fatigue syndrome and chronic Lyme. Are chronic or recurrent Lyme disease states recogized and treated by physicians in Connecticut particularly? I live in New Haven County and can find no MD who advertises his or herself that way. I need to find someone to go over some issues I'm having. Any info would be appreciated. I can travel to pretty much anywhere in Connecticut for care since it's a small state.
Posts: 6 | From Guilford, CT | Registered: May 2006
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liz28
Unregistered
posted
There are many well-respected LLMDs right near you. Look up the ILADS website for some famous ones, and call the Columbia University Chronic Lyme Clinic for recommendations. Keep trying if you can't get them by phone right away.
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Yes there are overlaps, but there are also significant differences. Want to know the reason we never took the time to find out definitive differences.
It costs too much money.
There are all kinds of tests one can do to indicate Lyme as opposed to CFS, but most of those tests won't be paid for by your insurance company unless your doctor is trying to rule out some other disease for which those procedures are covered.
I am of the FIRM belief that there are all kinds of objective abnormalities in every single chronic Lyme patient. One can even define disease with available testing. Its just that sometimes one will need many tests until the find the "objective" evidence.
In the case of CFS, there is little objective evidence. Some will have abnormal SPEC scans, but most scientists believe that this represents a subset of CFS patients who had some other disease which was improperly diagnosed.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Let me try to illustrate an important point. Some doctors try to distinguish "signs" from sypmtoms. These doctors, such as Dr. Gary Wormser, or as I might say, Dr. Worm for short (and I might add, a more accurate name) would say that Lyme disease is present with signs rather than symptoms. A sign would be something like an objective swelling of the knee, or frank arthritis. It always presnets with positive two-tiered testing. In late stage disease, this happens ever single time (except maybe .00001percent of Lyme cases).
Now, is this based on any science??? Not really.
One of the things that I just can't wrap my mind around is the use of so called epirical or ancedotal evidence. While Gary Wormser is against the use of this so called non double blinded evidence, if you read the citations listed in his IDSA guildlines, it is made up of nothing BUT anacedotal or empiractle evidence.
For example, there are numerious studies demonstrating long term antibiotics are usefull in a non blinded way, so you would have to believe that these people would never, ever cite an article that was not blinded as a source since this information is "largly worthless".
Unfortunatly, you would also be wrong.
Dr. Allan Steere teaches medical students, writes medical textbooks, and gives lectures on Lyme arthritis. One of the things he decries about our point of view is our reliance on "anacedotal evidence".
Allan Steere has long been advocating, teaching, and publishing autoimmune Lyme Arthritis. He recently gave a speech about just that at the UCLA school of Medicine.
So, that begs the question. There have been blinded studies that demonstrate autoimmune Lyme arthritis right?
No.
Steere seems perfectly fine defining science for others, yet when he himself is tested against that very same standard, only a very very small portion of his studies hold light.
In fact, if we hold all Lyme research to those standards, then we only have about 3 studies we can call science, as it applies to treating humans, because they were the only double blinded, ever.
The only truly scientific study to date, using ONLY measurable quantifyable, OBJECTIVE standards of science has been Fallons study.
The other two double blinded studies are still in the soft science category as they rely on questionaires to define the outcomes of their data.
I still chuckle each time I think about the questionaires idea as objective medical evidence.
Sociologists use questionaires to define their "SOCIAL SCIENCE"
I have got to believe that Medical Science must be more advanced than Sociology.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Evidently, the bumsteere, the worm, and others in the gang missed their calling.....they should have been sociologists. But would that group want them either?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
That is so true Lou, they should have been sociologists. Perhaps they could have studied the social impact of medical academics when it came to logicless thinking, and hypocritical stances that are razor thin.
I am still baffled that the large portion of the medical community does not see through this.
Here is another example of this sociology based Lyme Science.
that will lead you to a grand rounds hosted by a nuerologist from Cornell. Below I will highlight the point I was trying to make about this crap.
"He administered an interview, the SF-36 questionnaire, the depression survey, and reviewed medical records, and he found that 71% of the patients believed they were cured but 9% believed they were not cured (more adults than children). There were 20% who were unsure if they were cured, but most of these people were unsure because they weren't sure if Lyme disease was actually curable."
AND about what I was saying in reference to objective evidence. Notice what she says about the "evidence in treating Lyme encephalopathy". This is a study cited by the IDSA.
"Subtle encephalopathy is extremely rare but is one of the neurological manifestations we see primarily in this country. As I said in the beginning, this is a disease that is treatable if you choose your patients appropriately. And what is the data to support the idea that this is a treatable condition? It comes largely from this study by Erik Logigian, who is a neurologist at Tufts, who works with Alan Steere. It is an observational study, not a controlled study, of 18 patients that he saw between 1989 and 1995"
Uhh, sorry pal, but from what I understand, your point of view says that study is worthless. We need double blinded please, otherwise its back to the sociology drawing board.
Posts: 559 | From Cary, NC | Registered: May 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
LYMESCIENCE wrote: Yes there are overlaps, but there are also significant differences. Want to know the reason we never took the time to find out definitive differences.
Hmmm....I've spent considerable time looking for significant differences and can't find any. Even the hypotension and low red blood cell mass/low blood volume are the same. It is accepted by quite a few that lyme, CFS and fibromyalgia have identical symptoms.
Lyme Disease (Jan. 2005) - Townsend letter According to an informal study conducted by the American Lyme Disease Alliance (ALDA), most patients diagnosed with Chronic Fatigue Syndrome (CFS) are actually suffering from Lyme Disease. In a study of 31 patients diagnosed with CFS, 28 patients, or 90.3%, were found to be ill as a result of Lyme Disease.
Please provide references to your statement.
Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
No problem. I'll provide some references for you.
I've got tons.
The important thing to note here, is that the references your listing concern things like symptoms, which may not differ much.
Or at least, that is what was previously thought to be true.
They actually do differ in symptomolgy. But my reference was to labratory issues.
I'm exhausted right now, I'm writing a letter to the newspaper.
Hopefully, I will get to respond to your query tomorrow.
You made some EXCELLENT points concerning the similarities between Fibro, Lyme, and CFS symptoms.
Posts: 559 | From Cary, NC | Registered: May 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for your willingness to share your references LYMESCIENCE and for not being offended at my asking. I've been diagnosed with Fibroymaglia, CFS and now Lyme.
Yes, I understand that you are talking about lab tests but there are no lab tests that are used to diagnose CFS or fibromyalgia. They are both diagnosed by excluding other illnesses AND by some arbitrary criteria (symptoms) which I can dig up if anyone cares to know. There are tests that some researchers *think* are markers for CFS but I haven't heard of anything definitive.
The reading I've done indicates that the result of chronic lyme is often fibromyalgia. This makes sense to me since fibromyalgia is a syndrome - essentialy a collection of symptoms. Fibromyalgia can be caused by many things, including sleep apnea.
CFS and fibromyalgia are considered by some to be the same illness due to overlapping symptoms. Others think that some have both illnesses. I think that is a possibility too.
I've read quite a bit of Dr. Cheney's material and he seems to be one of the few who actually looks at some of the research into types of tests that can be done such as testing the RNASE-L pathway but since there are no tests to compare those measurements in lyme disease patients, one cannot say that there are test differences at this point. Not even everyone with CFS has a degranged RNASE-L either which confuses things.
You might think that the RNASE-L pathway would not be deranged in those with lyme but many with lyme seem to have multiple infections, including viral infections.
Frankly, I wouldn't be a bit surprised to see that 50% or more of CFS and fibromyalgia patients actually have lyme disease. We need a ton more research into these illnesses.
I look forward to seeing your references. Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Need to remember that ticks can spread viral infections as well as bacterial infections such as Lyme.
LymeScience,
Thanks so much for that link -- actually learned something -- hubby had a CSF ratio of .93 and abnormal is 1.0 -- best explanation I have found of what that test was actually measuring.
Trying to gather info to fight insurance company over insurance premium rating for hubby -- an LLMD neuro in Connecticut (you probably know which one) used the phrase "postLyme autoimmune movement disorder" in hubby's office notes.
Working on explaining this away as hubby has never had an abnormal immune system test (IgG, IgM etc measured through subclasses 3 different times) plus the fact that he has no arthritic symptoms. Wouldn't be surprised if we don't end up in court as thousands of dollars are at stake.
Not looking forward to a fight, but will be ready for it if it comes to that. Had to fight for private disability and Social Security both so we kind of know the drill by now.
smbrn,
suggest you read the Newbie links -- especially Dr B's 2005 treatment guidelines. Use the symptom checklist there to help you find answers. If you have more specific questions, maybe start a new thread as some of us have sort of highjacked your post.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I wasn't aware that co-infections included viruses. I thought they were only bacterial and protozoan. I figured the viral infections were picked up later so thanks for letting me know Bea.
I don't mean to hi-jack this thread further but can you name the viruses that are considered co-infections? Don't go to any trouble if you don't know off the top of your head. I'll do some searches on it.
I hope you don't have to battle with the insurance company but if you do, I wish you great success. Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My LLMD believes that chronic lyme is actually the Bartonella bacteria. Can't get rid of that bug, only knock it down.
Other co-infections that are viruses? Parvovirus, Epstein=Barre, Mycoplasmas.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
1: Rev Sci Tech. 2002 Aug;21(2):219-48. Related Articles, Links
Viral, parasitic and prion diseases of farmed deer and bison.
Haigh JC, Mackintosh C, Griffin F.
Department of Large Animal Clinical Sciences, Western College of Veterinary Medicine, 52 Campus Drive, Saskatoon S7N 5B4, Canada.
The most important viral disease of farmed deer and bison is malignant catarrhal fever. The other herpesviruses which have been isolated from these species are briefly described. Other viral agents that are recognised in these animals, including adenovirus, parapox, foot and mouth disease, bluetongue, epizootic haemorrhagic disease, bovine virus diarrhoea, rotavirus and coronavirus, are also discussed.
Ectoparasites of importance in this group in various parts of the world include a variety of ticks, as well as lice, keds, Oestridae, mange mites and fire ants. Helminth parasites include liver flukes (Fascioloides and Fasciola), gastrointestinal nematodes of the family Trichostrongylidae, pulmonary lungworms of the genus Dictyocaulus and extra-pulmonary lungworms of the family Protostrongylidae.
Chronic wasting disease is principally important in North America, where the disease occurs in wild cervids in a limited area and has been reported in farmed deer in a small number of states in the United States of America and one province in Canada. These diseases are summarised in terms of their classification, epidemiology, clinical signs, pathology, diagnosis, treatment and control.
Publication Types: Review
PMID: 11974612 [PubMed - indexed for MEDLINE]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
1: J Wildl Dis. 2004 Jan;40(1):92-8. Related Articles, Links
Disease survey of free-ranging grey brocket deer (Mazama gouazoubira) in the Gran Chaco, Bolivia.
Deem SL, Noss AJ, Villarroel R, Uhart MM, Karesh WB.
Field Veterinary Program, Wildlife Conservation Society, 2300 Southern Boulevard, Bronx, New York 10460, USA. [email protected]
Samples from 17 free-ranging hunter-killed grey brocket deer (Mazama gouazoubira) in the Gran Chaco, Bolivia, were collected during June-August 1999. All 17 deer appeared to be in good condition at the time of death. Gross necropsies were performed, serum was collected for serologic evaluation of selected infectious disease agents, and feces and ectoparasites were collected for evaluation of internal and external parasites.
Serologic tests were positive for antibodies against bovine respiratory syncytial virus and four Leptospira interrogans serovars, with questionable results for epizootic hemorrhagic disease virus serotypes 1 and 2. No antibodies were detected to Anaplasma marginale, Babesia bigemina, Babesia bovis, Babesia odocoilei, bluetongue virus (serotypes 2, 10, 11, 13, and 17), bovine viral diarrhea virus, Brucella abortus, foot-and-mouth disease virus, infectious bovine rhinotracheitis virus, Mycobacterium avium subsp. paratuberculosis, and parainfluenza-3 virus.
Sixty-four percent (7/11) of the deer had endoparasites. Amblyomma spp. ticks were found on seven deer, flies of the family Hippoboscidae on six deer, and lice on six deer.
PMID: 15137493 [PubMed - indexed for MEDLINE]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
As you can see from the 2 pubmed articles I posted there are numerous viruses which can be transmited by ticks from deer. The one article is from the U.S. and reports on farmed deer and the other article is from Bolivia and reports on deer hunted in the wild. Obviously there will be some geographic differences.
Neither of these articles studied the 2 most common viruses transmitted by ticks to humans -- tick-borne encephalitis and powassan virus (for this one tick only needs to be attached 15 minutes!).
I also believe that hubby acquired his Borna virus from his tickbite. I have posted about this in the past. Try searching for Borna virus on LymeNet.
And if one's immune system is weakened obviously dormant viruses such as HHV-6, EBV, CMV etc may reactivate.
I think I read somewhere that there were something like 100 different bacteria and viruses which could be transmitted by ticks. Don't have a complete list.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks Bea. I appreciate the information. Odd that none of these are tested as part of the co-infections if they are viable infections in humans. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
LYMESCIENCE wrote: No problem. I'll provide some references for you. I've got tons.
Up for references from LYMESCIENCE
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Sorry for the delay, I've been focusing on Lyme Advocacy latley.
Ok, so, since its late, and I'm tired, I'll start with one abstract, and give you the latest differences between the two diseases.
First, my point concerned labratory differences, as well as certain signs, but there are many differences in the physical symptoms between the two diseases. One point of reference is the level of disability.
The level of disability in Chronic Lyme Disease is far and above that which is found in Firbromyagila or CFS, and so are the symptoms.
Many of the citations listed above concern what the average physican would be looking for when doing an exam, mainly because not every patient is extensivly educated in the medical sciences, so for example, lets say you have a patient whom you diagnose with Fibro and CFS who complains of symptoms primarily relating to muscle pain, or fatigue. Bingo says the doctor, muslce pain is Fibro, fatigue is CFS.
BUT, what if say, this person had some unexplained heart difficulties a year previously?? Did the doctor ever ask questions like this?
Many times, patients have a very difficult time connecting the dots of events that happened a long time in the past to the current malady they face.
This is where an expert physican guided clinical history becomes important. While the presenting symptoms of CFS and Fibro may be similar to that which is experienced by those with Chronic Lyme. In most all cases, the personal history is very different.
But, like I said, I'll send you the info on that kind of detail tomorrow. My point was mainly about the labratory connections.
Ann Neurol. 2005 Jun;57(6):813-23. Related Articles, Links
The nervous system as ectopic germinal center: CXCL13 and IgG in lyme neuroborreliosis.
University of Medicine and Dentistry of New Jersey, New Jersey Medical School, Newark, NJ 07103, USA.
Lyme neuroborreliosis (LNB) is a chronic infection in which B-cell activation, plasma cell infiltration, and enhanced Ig production in infected tissue are prominent feature. However, little is known about how B cells and plasma cells invade and persist in target organs. To assess this issue, we developed real-time PCR measurements of IgG and CXCL13 production. We used these RNA assays and specific enzyme-linked immunosorbent assays for protein and demonstrated that human peripheral blood mononuclear cells (PBMCs), stimulated by Borrelia burgdorferi sonicate, produced CXCL13 and IgG. Magnetic separation of PBMC populations and flow cytometry showed that CXCL13 is produced by dendritic cells. We then measure the expression of CXCL13 and IgG in tissues and correlated the expression of these host genes with spirochetal load. We also measured expression of dbpA and BBK32, two spirochetal genes important in chronic infection. There was a strong correlation between host immune response gene expression (CXCL13 and IgG) and spirochetal load. Immunohistochemistry of infected nonhuman primates tissue confirmed that CXCL13 is expressed in the nervous system. We conclude that persistent production of CXCL13 and IgG within infected tissue, two characteristics of ectopic germinal centers, are definitive features of LNB.
Posts: 559 | From Cary, NC | Registered: May 2006
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