Earlier this week I started running a low grade fever but eventually ranging 99 to 101.8. Also broke out in a rash that looked just like RM Spotted Fever. Doc started treating for such and drew blood to check, that was Tuesday. Been taking Doxycycline and it seems to be helping, fever's pretty much gone. Yesterday they called and said it was Lymes disease and to finish the 10 Doxy routine and come back in 4 weeks.
My concern is the rash. I can't find anywhere on the net where Lymes exhibits the type rash I had - but at least it's fading now. Looked like my legs and torso had been peppered with bird shot. Never had the typical localized large rash. I have a lot of the noted symptoms though.... joint pain, difficulty sleeping, fatigue, malaise, head ache etc. Spend a lot of time in the woods so it's not unusual to pick the occasional tick off of me.
Should I just go with the doc's recommendation or seek an Infectious Disease Specialist? Thanks for any advice.
Bill
Posts: 7 | From SC | Registered: Oct 2008
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Ten days is certainly not enough doxy to cure you given the symptoms you are having. That's my opinion, but not the opinion of many doctors. There are too darn many of us suffering the consequences of chronic lyme who were told we were cured and years later we are still needing treatment.
Just want you to be forewarned. Your doctor asked you to return in four weeks. In the meantime go to the Seeking A Doctor forum and ask for a recommendation of a doctor in your area. You must leave your email address so they can send you names as we don't put names of doctors here.
Good luck.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Here's what the rash looked like... Hate these kind of pics but, first is of my ankle the second is my side (very faded). Nothing itched, some raised some not. Generally located on my torso, upper and lower legs and forearms. Sure would have put my money on RMSF though never formed on palms of hands nor bottoms of feet....
Bill
Posts: 7 | From SC | Registered: Oct 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
If he said you have lyme (not lymes) then you have it. A positive is a positive. But you should get a copy of the test for yourself!!! If you've had ticks on you ever, you have a good chance of having lyme.... and since you say you've been in the woods a lot and pick them off you all the time, that's a huge chance right there. Plus, he probably did the ELISA and let me just say, you are REALLY lucky to have had that come back positive, as it's a very bad test.... misses more than half of people who have lyme.
You could still have RMSF. Just because a test comes back negative, does not mean you don't have it.
You need to find a Lyme Literate MD (LLMD). To do that, go to the "Seeking a doctor" section of this board. When bitten by a tick, it could have also given you co-infections such as babesia, bartonella, ehrlichia, etc. So you want to have those treated as well... and most ID docs don't know what co-infections are or how to treat them. And if you go to a ID doc, they will only treat you for a short period of time and most likely, that will NOT do the trick to getting rid of the lyme or the co-infections. And you'll continue to stay sick and/or have symptoms.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Thanks, I'll try to get a copy of the test results and pursue further treatment....
Bill
Posts: 7 | From SC | Registered: Oct 2008
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bettyg
Unregistered
posted
welcome bill,
wow, what photos!! nice informative post for us to help you with.
check your profile for SC/NC llmds i'm sending. **********************************************
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
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posted
Just a little more info. Got a copy of my lab work.....
IGG band 41KD - Reactive IGM band 23KD - Reactive
Does that tell us any more?
Thanks
Bill
oh, it says for the IGG test that 5 or more bands need to be positive and for the IGM it says 2 or more bands need to be postive to confirm the AB to Bb?
Posts: 7 | From SC | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You wrote: " . . . it says for the IGG test that 5 or more bands need to be positive and for the IGM it says 2 or more bands need to be postive to confirm the AB to Bb? . . . "
THAT is why you need a real doctor an ILADS educated LLMD, NOT an ID specialist that is wedded to the IDSA.
You will see why in articles below.
Was your test for RMSF or for Lyme/Borrelia?
Still . . . you need to be assessed by a LLMD - reasons will unfold as you read from articles below. You also need to be assessed for a full range of tick-borne infections.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
=====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Went back to my normal MD yesterday to follow-up from my tests. He wasn't the one to see me originally.
He said I do have RMSF and gave me the results they had just gotten back a day earlier.... > or = 1:1024 titer. He then said that I do not have Lyme (not enough bands). I pointed out the controversy around the CDC guidelines and noted that if any bands were positive that would indicate the presence of the disease.
Anyway, to make a long story short, I convinced him to let me do another 30 days of doxycycline 100mg bid. That'll be just shy of a 6 week course of treatment. Figure I'll try that route and see what happens before I start pursuing other avenues, hopefully I won't need to. I've seen a lot of improvement since my miserable week last week.
Krooz
Posts: 7 | From SC | Registered: Oct 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
I would still get an LLMD. 6-8 weeks of abx is not enough.
I felt greatly improved after just 3 weeks of doxy, and I am still on abx and into my 6th month.
Lyme is very hard to eradicate, and if you have coinfections, even more complicated.
Make that appointment!!! Its hard to find a LLMD and then you may have to wait.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You said: " . . . I convinced him to let me do another 30 days of doxycycline 100mg bid. That'll be just shy of a 6 week course of treatment. Figure I'll try that route and see what happens before I start pursuing other avenues, . . ."
And you said the doctor said that you " . . . do not have Lyme (not enough bands)."
Were you able to read from some of the links above?
That "not enough bands" garbage is a ridiculous in light of the articles above. This doctor is not educated. It could still be lyme. You need a real doctor.
Regardless, mono therapy - a single treatment (and at such a low dose)- is NEVER enough for any TBD (tick-borne disease).
RMSF is no laughing matter and you are taking less than a kid with acne.
You can miss the window of opportunity that might be so helpful.
Please explore a combination treatment with someone who really knows all about this. There are a couple of good complementary protocols if you want a different approach but this is no simple infection and there is no simple treatment.
You deserve a fully thought out approach that will address all the issues at hand. First of all, the possibility of co-infections must be assessed.
Please take this seriously. It is your life in the balance here. There may be a few different avenues but each requires much attention.
Unfortunately (or, perhaps, fortunately), the self-education required of TBD patients is extraordinary. We are all here to help with that. There are many, many links to good science to help you.
Best of all would be to find an expert, TBD literate doctor. You should not have to convince a doctor to give you bad care. You need a doctor who can tell you of what has worked from his experience with TBD patients.
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
100 mg 2 times a day isn't enough doxy. Many people here are very sick with exactly that kind of early treatment- there's also some evidence that insufficient antibiotics early on can somewhat prevent your body from mounting an aggressive immune response as well.
I think Dr BUrrascano's "diagnostic hints" paper or the ILADS guidelines (both linked above) say 300 mg a day to 600 mg a day= most patients with Lyme who are treated by Lyme literate doctors get 200 mg twice a day. 100 is definitely not sufficient. It can definitely be enough to make you feel temporarily better.
If you're fighting more than one thing at the same time (and RMSF can be fatal!) it's probably extra important to not take any chances.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Well, here I thought I was doing a good thing....
Quoted from the ILADS guidelines: "One study has suggested that oral doxycycline (100 mg twice daily for 30 days) is as effective as intravenous ceftriaxone (2g daily for 30 days) in early disseminated Lyme disease."
Posts: 7 | From SC | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
=
Krooz,
Remember that we are not trying to beat up on you but scared that your life is literally at risk if you don't get proper treatment.
Do you have the link for that article?
that does not sound like the ILADS treatment guidelines at all.
I wonder where that was printed? Authors ?
Did that article go on to talk about co-infections and, for you, about RMSF? For you, it's best to get specific for RMSF while also being assessed for lyme and other coinfections.
And the term "early disseminated" can be confusing. The "early" seems to put a patient's mind at rest. However, there is nothing early about it.
Disseminated means it has become systemic, likely to the brain as well, and will require more complex treatment. Disseminated would require treatment for the cyst and other forms of the spirochete. Doxyc. will not address that.
Early would be stage one. Disseminated would be stage two but far beyond treatment for EARLY lyme as the imprecise term seems to suggest.
I'd appreciate it if you could find the link to that article. It might really be helpful to clear the confusion.
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[ 25. October 2008, 04:10 PM: Message edited by: Keebler ]
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