Lyme-like Illness

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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LymeEnigma
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Lyme-like Illness

Post by LymeEnigma » Wed 5 Dec 2007 19:34

Although it is essential that practitioners are allowed the judgment to diagnose Lyme clinically, this opens up the possibility that some people suffering from other similar chronic illnesses might end up misdiagnosed and treated with the wrong long-term antibiotics. Take the two following examples:

1. A patient complains of fever, severe headache, myalgias, anorexia, cough, pleuritic chest pain, sweats, chills, nausea, and vomiting. Sounds like Lyme and maybe babs, right? Wrong. This particular patient has a rare infection called Q fever. When Q fever goes chronic, long-term antibiotic therapy is essential, but if the wrong antibiotics are used, proper treatment will be delayed and the patient may continue to get worse.

Q fever can be passed through breast milk, and it can also be transmitted via ticks.

http://www.emedicine.com/emerg/topic492.htm
http://www.cdc.gov/ncidod/dvrd/qfever/index.htm

2. A patient complains of "flu-like" symptoms such as fever, sweats, malaise, anorexia, headache, myalgia, and back pain, as well as various skin manifestations, chronic fatigue, seizures, depression and arthritis. Sounds a lot like Lyme and maybe a co-infection or two, right? Wrong. This particular patient has another rare disease called brucellosis. Like Q fever, brucellosis can become a chronic illness, requiring a specific cocktail of long-term antibiotics. If someone with brucellosis were to be misdiagnosed with chronic Lyme, adequate treatment would likely be delayed, even if long-term antibiotic therapy were initiated.

Brucella can also be passed from mother to child via breast milk, and can also be transmitted via ticks.

http://www.cdc.gov/NCIDOD/DBMD/DISEASEI ... osis_t.htm
http://www.emedicine.com/emerg/topic883.htm

For those who have been treated for Lyme for far longer than seems reasonable, perhaps some more blood tests are in order? These diseases are rare, but not nonexistent. These are but two diseases out of many that can cause Lyme-like illness ... perhaps part of piecing together the big puzzle is delineating Lyme from other diseases that cause similar symptoms? What the Lyme-literate community now knows to be "atypical Lyme" may very well be any one of numerous other diseases that have yet to be considered, and not just the host of "co-infections" known to accompany (or come in place of) Lyme.

cave76
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Re: Lyme-like Illness

Post by cave76 » Wed 5 Dec 2007 21:02

****people suffering from other similar chronic illnesses might end up misdiagnosed and treated with the wrong long-term antibiotics. *****

LE--- You're right----up to a point. :) I've thought that all along.

Because I'd drunk raw milk from a 'dubious' cow :)

Because I've always lived rurally and assumed that nature was kind and gentle. :)

Because I'd always been seronegative for Lyme and even though I knew Tom Grier spoke the truth about seronegativity--- I was still paranoid as in: What if we're not testing for the right disease


I asked Stricker about that when I first saw him and after I'd been treated for several years, after I'd had a positive PCR of spinal fluid for Lyme.

I told him to 'test for everything' since my insurance pays for everything.

He said----You're being treated for 'everything' already. :)

What he meant and what I understood was that bacterial infections are treated by antibiotics. There are a 'finite' number of them. (A bit of generalization there, but ya get my drift.)

I'd already taken a lot of them. I would be taking more as IV and continuing abx came down the pike at me.

So-------I relaxed. Didn't become complacent. Didn't stop researching. But relaxed a bit and trusted Stricker to do his best by me---- with my help. :)

Here's what a brief search about two other bacterial infections showed:

Brucellosis

****The regimen of first choice is combination therapy with doxycycline for 45 days and streptomycin for 14 days. Gentamicin or netilmicin for the first 7 days may be substituted for streptomycin. Second-choice regimens consist of combinations of doxycycline and rifampicin (rifampin) for 45 days, or monotherapy with doxycycline for 45 days****

PMID: 9028744 [PubMed - indexed for MEDLINE]

***************************

Q fever

Treatment:

The cornerstone of treatment for Q fever is antibiotic therapy. For acute Q fever (early stage) doxycycline is the recommended agent. For chronic Q fever, a combination of doxycycline and hydroxychloroquine is frequently used.
Expectations (prognosis):

The prognosis for people who get treatment in the early stages of Q fever is generally good. Chronic Q fever requires prolonged treatment with antibiotics and requires frequent monitoring for relapses.

http://www.umm.edu/ency/article/001337trt.htm

*****************************

I know that I've been treated for brucellosis and Q fever. I daresay a lot of us have.

Claudia
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Re: Lyme-like Illness

Post by Claudia » Wed 5 Dec 2007 22:19

I agree about the broad-spectrum antibiotics that Lyme patients are generally given coverning the bacterial infections.

But what about viruses and other non-bacterial critters? What if mixed in with Bb or the other typical tick-borne co-infections we have something like Nairobi Goat-Gazelle virus that has jumped species, mutated, whatever. How would medical science even begin to sort something like that out?

cave76
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Re: Lyme-like Illness

Post by cave76 » Thu 6 Dec 2007 2:20

How would medical science even begin to sort something like that out?
Beats the heck out of ME! :D

Medical science hasn't even figured out Lyme yet. All in all I'd rather have that Nairobi-gazelle-goatie thing. LOL Cute name.

NellyP
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Re: Lyme-like Illness

Post by NellyP » Thu 6 Dec 2007 13:11

What the Lyme-literate community now knows to be "atypical Lyme" may very well be any one of numerous other diseases that have yet to be considered, and not just the host of "co-infections" known to accompany (or come in place of) Lyme.
First of all, I would like to ask you why you choose to coin these illnesses as "lyme-like"?

It seems to me that you are discovering the world and trying to preech to the choir ie people who are already more than WELL AWARE that Lyme (ie Borreliosis) is only ONE of the several infectious agents in what Virginia Scherr has called our "ménagerie of microbes"
These diseases are rare, but not nonexistent.
Q-fever (coxiella burnetii) and brucellosis have both been around and well-known for longer than Lyme, they are NOT RARE, in fact in some parts of the world they are VERY common
Although it is essential that practitioners are allowed the judgment to diagnose Lyme clinically, this opens up the possibility that some people suffering from other similar chronic illnesses might end up misdiagnosed and treated with the wrong long-term antibiotics.
Absolutely! YOU might not be aware of this, hence your attempt at re-inventing the wheel, but many "enlightened" LLMDs already understand this perfectly and therefore test and treat their patients accordingly. Sometimes they don't test "for everything" because it's impossible, but they are aware of the "other actors" (which AFAIC I refuse to call co-infections or Lyme-like infections as this is far, far too Lyme-centric) and they have them in mind when rxing even if they might not specifically name the potential culprits.

I, for one, have investigated many of these potentially severe and potentially chronic infectious illnesses at least as thorougly as I have borreliosis, not always encountering the echo I had hoped to encounter within the Lyme community.

LE, I wish you hadn't started being so arrogant and so belligerent towards several LLMDs, nit-picking about their supposedly penis enlargement activities etc. whereby instantly putting many people in a very bad mood! If you had an interest in these illnesses, you could've got onto interesting stuff like discussing C. burnetii and brucella directly. Your recent campaign against LLMDs now colours everything you write i e when you say:
Although it is essential that practitioners are allowed the judgment to diagnose Lyme clinically, this opens up the possibility that some people suffering from other similar chronic illnesses might end up misdiagnosed and treated with the wrong long-term antibiotics.
I completely agree with you, but I can't help and wonder whether you are genuinely interested in investigating these many other infections or whether you are having another dig at LLMDs that are not looking beyond "Lyme"?

Nelly (who thinks we should stop using the word "Lyme" altogether, our illnesses are much too complex and "Lyme" just doesn't accurately describe them)

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LymeEnigma
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Re: Lyme-like Illness

Post by LymeEnigma » Thu 6 Dec 2007 17:26

Claudia wrote:But what about viruses and other non-bacterial critters? What if mixed in with Bb or the other typical tick-borne co-infections we have something like Nairobi Goat-Gazelle virus that has jumped species, mutated, whatever. How would medical science even begin to sort something like that out?
I think viruses are another huge one, considering all that is out there and the way they mix and match genes. I think some of these "rarer" bacterial infections, however (Q-fever and brucella both only have reports of about 100 cases a year in the U.S.), may simply be lacking appropriate reporting criteria ... or, as I suspect is more responsible, doctors simply are not testing for these diseases.

Other than Cave and Nelly, who seem to have an answer 100% contrary to mine at every turn: did any of your doctors, that you are aware of, test you for these other diseases? None of mine did, and I spent half my life in Sonoma County and saw a LLMD in the Bay Area....

cave76
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Re: Lyme-like Illness

Post by cave76 » Thu 6 Dec 2007 18:44

****did any of your doctors, that you are aware of, test you for these other diseases?****

If you mean Brucellosis or Q fever (the ones you mentioned) no they didn't. And I thought I'd explained why and why I was content with them not doing that in my earlier post.

If you mean all the viral illnesses that a person might have contracted----- some of them and probably can't remember the names in any case. :)

Since my CBC's have been consistently in the 'absolutely nothing wrong with this woman" range over the years and since almost any other 'odd' tests that Stricker took shows the same, I have to stick with that. Stricker has much expertise in hematology and immunology (two sub specialties of his) and I've mainly trusted him to do what tests he feels might be pertinent.

Are these tests perfect? No. I think we all recognize that.

So, what recourse would I have other than to start treating for any and all diseases empirically? And you and I both know that doing that could be very dangerous.

I don't see any other option. Do you?

(Remember ALL docs have to be careful not to seem on a 'fishing expedition' in case the insurance companies land on his back!)

A doctor has to have SOME reason to believe that testing for a disease is 'pertinent'. LLMDs already stick their noses out in harms way when they're testing and treating us for our KNOWN diseases.

Is this system perfect? No. I hope you, LE, can find that perfect system.
I think some of these "rarer" bacterial infections, however (Q-fever and brucella both only have reports of about 100 cases a year in the U.S.), may simply be lacking appropriate reporting criteria ... or, as I suspect is more responsible, doctors simply are not testing for these diseases.
I think you're right about lacking appropriate reporting criteria. Same as in TBDs,

Your last sentence shows your bias. I've explained at least one or two reasons why the doctors' are simply'not testing for these disease.

Claudia
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Re: Lyme-like Illness

Post by Claudia » Thu 6 Dec 2007 19:29

Well, what do you know? Just the wrong cloven hoofed animal :shock: :

Nairobi Sheep Disease Virus, an Important Tick-Borne Pathogen of Sheep and Goats in Africa, Is Also Present in Asia
Authors: Marczinke B.I.; Nichol S.T.

Source: Virology, Volume 303, Number 1, November 2002 , pp. 146-151(6)

Publisher: Academic Press

Abstract:

Nairobi sheep disease (NSD) virus is the prototype of the tick-borne NSD serogroup, genus Nairovirus, family Bunyaviridae. It is highly pathogenic for sheep and goats, causes disease in humans, and is widespread throughout East Africa. Ganjam virus has caused disease in goats and humans in India. Due to their occurrence on different continents and association with different ticks, these viruses were considered distinct despite serologic cross-reactivity. Their S RNA genome segments and encoded nucleocapsid proteins were found to be 1590 nucleotides and 482 amino acids in length and differed by only 10 and 3% at nucleotide and amino acid levels, respectively. Genetic and serologic data demonstrate that Ganjam virus is an Asian variant of NSD virus. These viruses were phylogenetically more closely related to Hazara virus than Dugbe virus. © 2002 Elsevier Science (USA).

Document Type: Research article

DOI: 10.1006/viro.2002.1514

Affiliations: Division of Viral and Rickettsial Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia, 30333:

Links for this article

http://www.ingentaconnect.com/ap/vy/200 ... 1/art01514
http://openurl.ingenta.com/content?genr ... &epage=151
http://dx.doi.org/10.1006/viro.2002.1514

NellyP
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Re: Lyme-like Illness

Post by NellyP » Thu 6 Dec 2007 19:52

Other than Cave and Nelly, who seem to have an answer 100% contrary to mine at every turn:
LE, now I have another explanation for what you write here: you can type but you can't READ!!!

Neither Cave nor myself "have an answer 100% contrary to yours at every turn", in fact if you read my last post you'll see that quite on the contrary that I AGREE with you when you said other infections should be considered!

Everybody who has read what I have posted here, there and everywhere over the years knows that I am probably one of the people who has been pushing "other infections" more than anyone else in the Lyme world.

AND, just in case you hadn't noticed, this is a EUROPEAN-based forum and over here, especially in some southern parts of the European continent (and I am not even mentioning Turkey and the whole of the Middle East!) infections like Q-fever and Brucellosis are COMMON, in cattle, sheep AND in humans. I personally know a person who died of Q-fever, he lived in Syria.

Q-fever is also VERY COMMON in Australia among farmers and people who work in the meat industry. Q-fever was named in Queensland Australia (Query fever, as nobody knew what caused it at the time).

It is also very common in the south of France, in Italy, Spain, Greece etc I would post articles but I can't be bothered, as I am replying to LE and she can't READ

Nelly

Daise
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Re: Lyme-like Illness

Post by Daise » Fri 7 Dec 2007 5:32

LymeEnigma:
If this effort has not been to help you or to defend ourselves or others, or to defend what is known (and often spat on over at Lymenet,) by what we observe in your responses, than what has it been for?

You wrote: "Other than Cave and Nelly, who seem to have an answer 100% contrary to mine at every turn ... "

That's not real. The proof is on some of these threads. You are not reading all of a thread, yet you are responding with combative behavior. As I mentioned on another thread, combative behavior is a symptom one can have of bartonella. I'm not saying you have bartonella, but perhaps ...

I understand about not reading all of a post, due to my brain infection, which we all have. We all know what this is and it's caused by these :twisted: pathogens. :twisted: Yet, you're responding in a combative manner. Do you see what I'm saying?

I was just clinically diagnosed with bartonella. I'm taking Septra DS. Both me and my LLMD agree. You take your best guess, that's all you can do.



Nelly:
I'm glad you've investigated other pathogens. May we have lunch? ;)

I know little about other germ illnesses, though I've tried. I don't do well yet with most medical papers. Do you know the best source at the moment for signs and symptoms of various germ infections?

Why is it that researchers seem to be able to find or detect a pathogen in a bird or animal, but it's extremely difficult in humans?

Do you think bartonella from cat fleas is the same as bartonella from ticks--maybe a different strain? Or not.

In the US the western fence lizard gets tick bites--and sometimes Bb. I understand this lizard species has a protein which disarms Bb. Do you know if medical researchers have pursued this?

Everyone else feel free to chime in! :lol:

Yes, everything gets lumped under "Lyme." Well ... I suppose the name acts as a depository for information on tick diseases, an umbrella name. It is bringing together diverse interests in various fields. But yes, it does give the impression that it all revolves around Bb, just like the "deer tick" illness of Bb revolved around deer, for a long time. There is the saying, "I can't have Lyme because I haven't been around any deer." :?


LymeEnigma:
Researchers lack funding, especially from the point of view of sick people. It's not the doctors' fault. I imagine ILADS docs would be thrilled with more information on different or new pathogens and how they interact and how they can change. I imagine researchers sitting-it-out a lot of the time, for lack of funding. I imagine they are missing out on discovery--for many fields of study: biology, the environment, history and so on.

Night all.

Daise :)

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