posted
My wife and I have been lurking around here and reading hoping to try and get a line on what may be going on with me. I love the site.
Let me tell you a bit about my story, if anyone has any insight or suggestions about where to go and what to try they I would greatly appreciate it.
In late summer 2005 I caught what appeared on all levels to be Rocky Mountain Spotted Fever. I had the fever, spots, was hospitalized for days and out of work for months. Thing is, it never showed in my blood. Tests always came back negative. I was at Emory University Hospital here in Atlanta and had ID folks all around my bed and they agreed that esp. with the spots it HAD to be RMSF. But it never showed in the blood. It still doesn't two years later.
I got better. By January of 2006 I felt a lot like my old self, say 90% energy level as before. By summer 2006 I began getting stiff again in the arms, legs, neck, etc. It would move around. As of right now it has settled on my wrists and neck and right leg. I miss a lot of work. Thankfully for now they are being pretty cool about it.
I have seen Neurologist, Rheumatologists, ID docs, etc. Blood all comes up negative and they say there is nothing wrong. Last Rheum essentially said it was a mental thing. That I was depressed. When I told him a steroid anti-inflamatory took the pain down he said it was because it gave me a feeling of "well being". I asked him if my hospitalization with nothing in the blood then either was all in my head. He ended it then.
I am really at a loss. Without anything in the blood no one will treat me. Has anyone ever heard of RMSF that does not show in the blood but hangs around?
Thanks so much, sincerely, Chad
Posts: 3 | From Atlanta | Registered: Jul 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
None of the tests for Lyme related illnesses are very good. I have seen people with positive RMSF tests but have also seen people with suspected RMSF that had negative tests as well. It is likely that there are other co-infections involved also which may not have been considered. Did they test for Babesia? Bartonella? Borrelia? All important and the odds are if you have RMSF and were bitten by a tick, some of the rest of these players probably came along...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Rocky
Sorry I don't know much about rocky fever but hopefully someone will come along soon to help you. There is some information on RMSF on the "Basics" link below.
As far as lyme and co-infections you can still have them & test negative. Here are a few reasons why:
posted
Hey thanks for the replies. I have not found a Lyme doc yet. The Steroids were given by the infectious dis "specialist" to see if it would knock back the pain and swelling. It did. BUT you are correct since they are an immune suppressor they are not something to take if you have an infection.
I had blood drawn to test for Mycoplasmas (sp) today. My primary care doc is sympathetic and has my on Doxycyclin at the moment to see if that helps. Been on that for 2 weeks. Would I have noticed a major difference if an antibiotic was working in that time?
At least she is willing to try something. I am looking for a doctor who might have an insight. It is a bit of an uphill battle to say the least. I really believe this can be treated and cured if I can find a doc with some experience and is willing to look at more than just a blood test.
I mean no offense to most doctors but aren't some basic troubleshooting skills taught in medical school? I mean any idiot can be taught to look at blood results and x-rays and then dole out prescription X as indictated by a flowchart. Maybe that is just the way it works.
Thanks again, Chad
Posts: 3 | From Atlanta | Registered: Jul 2007
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posted
If you have Lyme, I doubt the doxy would work this quickly. I have had Lyme since last fall, got diagnosed in early June and have been on abx since then. I am just now starting to feel a little better.
I find that there is improvement, but it is VERY slow.
Posts: 97 | From Clinton, CT | Registered: Jun 2007
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butchieboo
Unregistered
posted
ROCKY,
I have never had RMSF so I'm not to familiar with the signs and symptoms. They are probably very close in structure and modality of existing list for lyme and co-infections.
I am pretty sure I have BABs, It has never showed up on any western blot as such...but this is just an example of how bad the testing facilities are out there.
Also I had a good reaction when diagnosed and placed on Doxy. It was almost immediate and they gave me ammoxycillin as well. Which could have been why my initial recovery from symptoms was so dramatically fast.
It, certainly worked in a hurry for me. So I don'nt understand why it would'nt have worked swiftly for you as well....however I know how
lyme may work differently in each of us...which also means, so would the abx's I suppose.
Unfortunately I also had a dramatic relapse.
Well it is interesting anyway. However you may not realize that borelia and coinfections have been found in RMSF ticks as well as other coinfections.
This being the case, your antibiotic regimen was probably to little a dose and to little a period of time to erradicate BB and company.
Never worry about why the bugs don't show up in lab tests. Especially if the tests were done in
a hospital lab of all places. They're probably the most ill equipped and uneducated about TBD's as any lab could be.
I suggest you get to a llmd and find out what's going on.
posted
welcome rocky to the board, and glad you have been lurking awhile to get a feel of the board, ALL it has to offer for reputable sites, MORAL SUPPORT when needed, and how to find a LLMD in your state!
i'm sending you a private message with my newbie links, advise, symtpoms list, tests, disability, much more, and
treepatrol's newbie archive of 1000+ GOOD info links!
also, i suggest testing for co-infections at FRY LABS, ARIZONA for $250 vs. Igenex's $1,000 for co-infection testing.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Chad,
If I may, how much doxy are you on?
Have you ever been tested for Lyme disease?
I am not sure what the turn around time may be for RMSF, but I know
From research, that doxy is the antibiotic
Of choice for this infection.
Please find a LLMD soon.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Doxy is 100Mg twice a day. Have been on it since 7/2. So about two weeks. I think it may be making a difference at least in energy level. I still have the same pains but I feel I MIGHT can endure them a little longer. We'll see.
Conventional Lyme and RMSP tests have been run and have come back negative. It is maddening that I keep having tests run and they all come back negative.
My primary, while not lime literate has been great about signing off on referrals and running tests to try to help me find the right specialist. Thanks to this site I now have a lead on one in the metro Atlanta area and another in Charlotte, NC.
I am waiting on the results of a Mycoplasma test that got sent off today. I am of course looking at these for the possible Fibromyalgia route as well.
It's been as continues to be an adventure. Glad I registered here today. Learned a lot already!
Chad
Posts: 3 | From Atlanta | Registered: Jul 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Chad
in answer to your question.."mean no offense to most doctors but aren't some basic troubleshooting skills taught in medical school? I mean any idiot can be taught to look at blood results and x-rays and then dole out prescription X as indictated by a flowchart. Maybe that is just the way it works."
There are two camps of thinking out there. Here is a link that might help you understand what's going on:
Most tests are iffy & not sensitive enough to pick up a TBI infection for a variey of reasons. The only lab that I would trust is www.igenex.com They read all the specific bands. Most regular labs do not.
Any lab can draw the blood but you need the paper work from igenex & a doctors signature & it needs to be over nited. You can call them if you have any questions at : 1-800-832-3200
As far as the doxy goes..in my none medical opinion 200 a day is not high enough. Here's a link on Doxy:
Hope you can find a doctor who is lyme literate. The other specialists out there, in most cases don't know enough about TBI's.
Good luck on your journey to wellness & I hope you can feel better soon Dana
Ps: are you taking any pro-bitoics yet?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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butchieboo
Unregistered
posted
Rocky,
Sorry, when I answered your post the first time I was really tired and my eyes were'nt working as well as my brain. I re-read what I wrote...and edited the first post I made.
I too am going through the exact same thing with my daughter. She had the spots and then it has gone into red, hot and itchy and now peeling week 3. She had them on her palms and soles of her feet. She now has tiny pimple-like rash on her torso and legs.
What was yours like?
Posts: 15 | From PA | Registered: Jul 2007
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Chad, part of what you may be encountering is the standard "We don't ahve Lyme in Georgia." While that is almost certainly not the case, I'm pretty sure I was infected in my back yard in VIrginia Highland, some docs respond better if they know you traveled to an endemic area such as New England or northern California, where I live now. There's so much of it around here that a fair number of the docs are pretty savvy and very few try to argue about the diagnosis. Anyway, travels could be one of the risk factors that would be considered in what is, ultimately (per CDC), a clinical diagnosis.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Chad, I wouldn't be surprised if RMSF has strains like Ehrlichiosis or if this is plain Ehrlichiosis which sometimes DOES have a spotty rash.
This abstract shows that 2 of 4 people who DIED of ACUTE Ehrlichiosis were repetitively BLOOD NEGATIVE. This is why I always tell newbies to get treated for everythiing- because it is not just Lyme that should be a clinical diagnosis- the common coinfections sequester in tissue as well!!!!!!!!!!!
Hopefully you won't have to do THIS kind of diagnosis*)!*)!*! (that's a joke*)!!!
W E L C O M E ! ! ! ! !to you & your wife*)*!)! ************************************************* 1: Am J Trop Med Hyg. 2001 Nov;65(5):603-9. Links Tissue diagnosis of Ehrlichia chaffeensis in patients with fatal ehrlichiosis by use of immunohistochemistry, in situ hybridization, and polymerase chain reaction.Dawson JE, Paddock CD, Warner CK, Greer PW, Bartlett JH, Ewing SA, Munderloh UG, Zaki SR. Infectious Disease Pathology Activity, Division of Viral and Rickettsial Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia 30333, USA. [email protected]
In the United States, human ehrlichiosis is a complex of emerging tick-borne diseases caused by 3 distinct Ehrlichia species: Ehrlichia chaffeensis, Ehrlichia ewingii, and the human granulocytotropic ehrlichiosis agent.
Ehrlichioses are characterized by a mild to severe illness, and approximately 4% of cases are fatal.
Because these obligate intracellular bacteria are difficult to resolve with routine histologic techniques, their distribution in tissues has not been well described.
To facilitate the visualization and detection of ehrlichiae, immunohistochemistry (IHC), in situ hybridization (ISH), and polymerase chain reaction (PCR) assays were developed by use of tissues from 4 fatal cases of E. chaffeensis infection.
Evidence of E. chaffeensis via IHC, ISH, and PCR was documented in all 4 cases.
Abundant immunostaining and in situ nucleic acid hybridization were observed in spleen and lymph node from all
4 patients.
****************Significantly,
in 2 of these patients, serologic evidence of infection was ___absent.____ ******************************
Use of IHC, ISH, and PCR to visualize and detect Ehrlichia in tissues can facilitate diagnosis of ehrlichial infections.
PMID: 11716122
Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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