posted
Just found this on the CDC website. Lots of inaccurate info, but the pictures of ticks, lyme rashes and U.S. maps of reported cases are of interest.
This is a 21 page PDF -- first edition published 2013
Tickborne Diseases of the U.S.: A Reference Manual for Health Care Providers
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Judie
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Thanks Bea!
I've had a "Baker's cyst" thing before (I never knew what it was until reading through this manual you posted).
None of the docs could say why I had it. They just said inflammation or eczema. One crappy rheumatologist said there was nothing wrong with me and my "mind" was causing it.
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GretaM
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Judie-What an a.. donkey that doc was! Grrr...
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GretaM
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Thanks SO much Bea! I wanted to make a tick flip book for my coworkers for easy ID and removal.
This has five (four?) of the ones in my area I have seen.
Frig I hate ticks. the little devils.
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Judie
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My only comfort is that horrible rheumotologist was old and I don't think he's practicing anymore.
I listed all my symptoms to the rheumologist (you could visually see the problems too with rashes, swollen joints, and lymph nodes the size of baseballs in my armpits) and he insisted my mind was causing it because my test for arthritis looked fine.
No one even thought to test me for infections.
It was right after that my PCP said, "I don't know what you have, let's call it chronic fatigue syndrome."
At least I know what I have now!
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oxygenbabe
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This is annoying because after many months of data mining I found out that 30-40% of ticks in the south/southeast carry a pathogenic rickettsia that nobody tests for, there are NO tests, and it is not even mentioned in this CDC pamphlet, but is acknowledged in a superb review article of rickettsia worldwide, and was found in a 2006 statewide study in GA of 400 ticks submitted by volunteers from all over GA--it was in 27.5% of the ticks.
Serology may cross react with RMSF and it may even seem to BE RMSF.
But it's not acknowledged or tested for. And since rickettsia can transmit in 12 hours its really disgusting not to have this bug in there with the rest. You're talking one in every 3-4 ticks.
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Are you talking about rickettsia parkeri or a different species? I think there are at least 9 different rickettsia species that have been found in humans in the U.s.
Bea Seibert
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oxygenbabe
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Rickettsia ambylommi
Read a wonderful review article of all the rickettsia and outbreaks around the world, identified by species, all referenced etc. Towards the end they talk about the above one, which is in 40% of southern and southeastern ticks.
And a study very well conducted and publicized which was fricken NEVER PICKED UP BY MEDIA OR THE CDC, in 2006 in GA, working with all the state parks, and having dropoff boxes, for volunteers to submit attched, embedded, or just ticks they found. 400 were submitted. They also followd up on illness after.
Very little borrelia, erlichia etc, but 27.5% had this ambylommi.
The review article states it may be confused with RMSF...and cross react.
I'm sorry but how much illness is there in the susceptible...who don;t' know what they have and test negative for the 3 known rickettsia? It's so disgusting.
If I were to contact the CDC they'd give me some bull**** about it not being officially proven its pathogenic (even tho the review article states it is).
Now I'm going to get a test for RMSF because I got a tickbite in July, I removed it fairly soon but who knows how exactly (it got on some time in the night I think and I removed it int he shower the next morning, wasnot engorged), and I went and got tests for erlichia and borrelia. I already knew I didn't have my old friend borrelia as I had no familiar symptoms. But I wanted to be sure I didn't have a rickettsia. They came up negative 2 weeks later, but how do I know about THIS one.
I'm so disgusted with the state of things.
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Have been reviewing some of hubby's medical records lately. Don't know what lab you plan to use.
Hubby had what could have been a RMSF rash on 5/31/11 -- He was hospitalized from 5-28 - 5/31 for the 4th of his 5 fevers over 101.6 that year. No known tickbite at that time -- he was also diagnosed with a serratia marcescens infection at that time.
On 6/17/11 his LLMD did a rickettsial panel with Quest -- his IgG for RMSF was high at 1:64 -- the only time IgG for RMSF was ever elevated. He never had elevated IgM antibodies on that test or subsequent tests.
Quest only lists IgM antibodies as positive or negative. Labcorp gives quantitative results as well -- next followup test for RMSF was from Labcorp on 1/26/12 which showed an IgM result of .13 for RMSF which is a negative result.
At the time of the hospitalization in May hubby was on either mino or doxy -- don't remember which right off -- and he stayed on one or the other for the next 9 months.
He also had a positive titer for typhus at 1:64 -- I think it was on the 1/26 Labcorp test, but need to locate those results.
Anyway -- my suggestion would be to do testing with both LabCorp and Quest as the results may potentially be different -- those are the only labs hubby was tested with for rickettsia in that timeframe.
My statement that there are 9 rickettsia species in the U.S. is probably inaccurate -- some of the ones tested by the lab I got that info from are actually foreign and supposedly not found in the U.S.
The lab I am referring to used to be called SpiroStat. They changed their name to KS3. They test for 9 rickettsia species by PCR -- test does include rickettsia parkeri but not rickettsia ambylommi. Hubby was tested by that lab on 4/26/12 and results were negative.
posted
Oxygenbabe -- Another question. How soon after the tickbites were you tested for the ehrlichia? Also which lab was used? I have been trying to make sense of hubby's tests and am still confused.
As I said he had 5 fevers in 2011. The 5th fever he was hospitalized from 8/31 - 9/4. Again positive for serratia which actually went into sepsis.
Coincidentally the 8/25 testing from LabCorp was positive at 1:128 IgG for HGE or HGA (anaplasma). Subsequent LabCorp tests found elevated IgG results as follows -- 12/21/11 1:64, 1/6/12 1:256 and 4/20/12 1:128. But IgM results were always negative. No known tickbites during this timeframe.
Also the LabCorp test on 1/6/12 was IgG positive at 1:256 for ehrlichia chaffeensis. All other tests for e. chaffeensis prior and subsequent negative for IgG and IgM. Also on 1/6 bloodwork WBC dropped to 3.8 -- bounced back quickly to normal range.
Quest tests for ehrlichia and anaplasma were totally negative on 6/17/11 and 9/14/11.
It seems very strange to me that no IgM antibodies were ever detected.
Hubby did run low grade fevers for many months during 2011 and 2012 and was continuously on either doxy or mino for the entire time.
Beginning in January 2011 was when we did the extremely aggressive babs treatment for the next 14 months.
My theory is that he had a long term low grade infection with anaplasma and ehrlichia which was released into the bloodstream when he had hemolysis of RBC during babs treatment. I also feel he had some form of rickettsia (maybe not actually RMSF) which was released into the bloodstream from the hemolysis and destruction of both RBC and WBC due to the serratia infections.
My suggestion would be to be tested by both LabCorp and Quest for ehrlichia and anaplasma as well.
Bea Seibert
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oxygenbabe
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Wow, he sounds like he had multiple rickettsia, any idea where he got them? He sounds like someone exposed to multiple tickbites.
I will use MDL, they're really good. I used them 2 weeks after my tickbite in July. I am not sure I have anything anyway, but I got so worried I started taking so much echinacea, which also works as an antifungal, and so had die-off and still take it at lower doses every other day.
I did have one band, I think 34, on my borrelia, but that's just late stage lyme--from my 2000 tickbite in Connecticut, which lit up the western blot, caused a big bullseye, and caused sky high Elisa. Fourteen years later, it's still percolating in there with that one lone antibody.
But as far as a recent infection--apparently my body goes wacko around borrelia, and I knew I didn't get any borrelia anyway. It's not all that common down here, though there are some southern strains; I got the tick off before 24 hours so that hugely lessens likelihood of any borrelias, and most of all, I know the borrelia symptoms and had none of them.
But this rickettsia can be mild--but as you know--mild things can fester when they're tickborne. So I want to test for RMSF with which it cross reacts sometimes, just as a precaution. And I might look into some buhner herbs.
At the time, I could have taken doxycycline but that makes me so ill, I hate that antibiotic, and so I chose not to, because I had no proof of any infection.
As I said, I've tested negative for erlichia--back in NYC, and recently, I really don't think I have it. And the test included anaplsam--HGE and HME--right? So anaplasma is not that common here (I"m in GA now), and erlichia does exist, but not nearly as common as this rickettsia ambylommi.
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The only known tickbites Steve had were in March and May of 2012 AFTER all those positive rickettsia test results.
I wish now we had redone the Immunosciences test panel in April of 2012 rather than the Spirostat testing.
I am still waiting for info from Columbia University on hubby's brain and other specimans. He died 10/9/12.
The only lyme testing he ever had that was positive was a PCR from IGeneX in 2002 and 2 positive recombinant antigen tests from MDL in 2002 and 2003 I think (test is no longer offered).
Never ever had any indeterminate or positive bands except for one positive band 41 once -- this was on 15 or so Western Blots over the years from multiple labs including IGeneX, MDL and Stoney Brook.
I don't remember if we ever tested rickettsia from IGeneX or MDL.
I remember the first time he ever had low WBC was when he finally ramped up the dose of rifampin to 600 mg -- took 3 or 4 months to do that. That was in 2008 and from that point on he had borderline normal WBC with it dipping low every few months.
And fever was never a symptom until he tried the IV flagyl the first time in early 2012. After 2 weeks on the IV flagyl he had the first of the 5 fevers with a rectal temp of 105.6
He eventually used all 30 bags of the IV flagyl by pulsing it 2 or 3 times per week. Had used oral flagyl for at least 6 months in the past with no problems.
Then in 2012 after the 2nd new tickbite and 2 months of IV Rocephin concurrent with 1 month IV Zithromax we tried IV flagyl again. During the 2nd 2 day pulse the 3 days of shortness of breath began which led to the ER visit and the diagnosis of lung failure.
Hubby died a month later from ARDS (lung failure) and a splenic infarction (blood clot in the spleen) caused by babesia in my opinion.
My second theory is that maybe babesia parasites can harbor rickettsia and killing babesia is what uncovered those other latent infections.
Since all the hoopla has come out about Powassan virus I sometimes wonder if the Borna virus hubby was positive for may have been a cross reaction.
He had 4 positive tests I think between 2003 and 2006. Then the lab offering the test closed and there are no U.S. labs which test for that virus anymore. I think Powassan and Borna are both flava viruses.
Since you are in Georgia I would also test for Stari -- MDL used to offer a PCR test for borrelia lonestari.
I am pretty sure Lone star ticks are the most common tick in Georgia.
Bea Seibert
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oxygenbabe
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Known tickbite doesn't mean no tickbite :-).
I was bit by a lonestar--I saved the little guy. I got him off in the morning, with a tick twister, and dropped him into a plastic bag where he scurried around trying to figure out what had happened to him. I was so paranoid I then killed him, and then sent him off for testing with a tick from my partner (adult lonestar). He got a bunch of bites and at some point took 10 days of doxycycline prophlactically. At the time I seriously considered taking 5 days prophylactically but it would have made me so miserable, so sick, although that's a known minimum for rickettisal infections (if I had one). He has had no symptoms from any of his tickbites down here (he goes into the woods which I don't, so he's picked them up in Fl and Ga)
Unfortunately I sent them to Kerry Clark's lab at Univ N Fl which is supposed to test for the southern strains, and never heard back from the guy. No acknowledgement of the ticks, no answer to emails or calls. I am still furious, as I would have gladly paid MDL to test them.
I don't need to test for STARI, because it's borrelia, too, and I recognize borrelia. I had a mildish strain from age 21 in Connecticut, and a devastating strain years later in Connecticut. The typical joint pains, arthralgias, bullseye, stiff neck, --I have none of it. I got the tick off early and it takes borrelia 24-48 hours to transmit.
Viruses can transmit instantly. Babesia can transmit quickly, and rickettsia in about 12 hours sometimes. (12-24). That's why I say, if I got anything, since I tested negative for borrelia and erlichia, it would be this rickettsia, since it is in 1/4 or maybe 1/3 ticks in GA and the south.
And I find that outrageous--that they don't test for it, that they don't acknowledge it at all at the CDC, yet it's established in the literature and by this field testing done in GA in 2006, to be highly prevalent.
I don't know what your poor hubby's true problem was. I think one bug up-ends an immune system and then it can't fight the others. For each of us that can be different. People with a Gp6D deficiency get really bad, sometimes fatal, cases of RMSF. All of us have different genetics, which make us more resistant to some bugs, and maybe highly vulnerable to others. It really varies.
The best prevention is frequent tick checks. We camp a lot, and I usually pick open spots far from the woods. Although a bird or squirrel could still drop a tick, it's much less likely, and even if it did, the tick doesn't want to be on the open gravel or road, so it'll crawl off to shade in order not to be dessicated. But when we got bit it was insanely rainy (triple the normal rain), thus cool on many days instead of the usual sunny high heat, and ticks could forage for hosts more easily without getting dessicated. Numerous people were complaining (it was early July) about getting ticks all over them. And I had chosen a really pretty spot fronting the woods :-( which I will never do again! That's how we got bit. We were close enough to the woods, and it was rainy and cool, the lonestars came after us.
If I didn't hate the diseases they carry, I would say, they're kind of cute for a tick.
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oxygenbabe
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I should add, lonestar behavior is wildly different than black tick. Lonestars actively seek hosts while black deer ticks wait on a blade of grass or leafy cover, waving their forelegs in the air to grab onto a host that passes by. You cannot necessarily avoid a lonestar if you're in its vicinity and it needs a blood meal. In the cool of the evening or morning, it may well venture out to find you if you're sitting there enjoying a cuppa. It can travel 60 or 100 feet if it smells you. Obviously, if you're walking or jogging it's not going to chase you ;-) but, they are very aggressive. So you check yourself, full body check, 2-3x day. As anxiety provoking as these checks can be, they will prevent much tickborne disease, because you'll find one crawling or perhaps attached, usually before most infections have been transmitted. If you tolerate abx well you can take some prophylactically; or just send the tick for testing.
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map1131
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oxygenbabe, I totally get the activity of the Lone Star tick. Do you have a website that explains the Lone Star tick vs the deer tick?
thanks, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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oxygenbabe
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Not really, Pam. That is the problem. After this summer I spent weeks researching lonestars.
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map1131
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I found the bite of the Lone Star very apparent. It itched like crazy too.
Two of them in summer '05, long after dealing with Lyme & co, got me. One of those bites took forever to heal.
It must have stayed a round rash, itchy, very irritated, sore for 2 mths before it finally disappeared?????
One month later it turned itself into another tick bite area. Healed again over couple weeks. Turned again into a tick bite itchy area.
This went on for 6 mths before I finally mentioned the sore to my then voodoo chiro doctor. He did some vial of toxins work with that sore while it was in it's ticked off phase.
It never turned into a sore rash again. But to this day every so often I have a strong itch in that spot. So strong that I always go look to see if a Lone Star has got me again.
I've never felt another tick bite like it. Deer ticks are sneaky son of a guns. Don't know it until you see them or until you see the skin irritation/rash around the area.
Thanks oxygenbabe.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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