First off, I just wanted to recognize the incredible resource you provide here to folks in need. I've been perusing the forum for days and am appreciative of how willing people are to provide information, advice, or just comfort to anyone who asks for it. Great stuff...
So my journey began about 2 weeks ago (June 11) when I woke up in the middle of the night shaking violently with the chills. About 2 hours later, I soaked the bed with sweat. Rinse and repeat for almost a week and throw in terrible weakness, fatigue, neck, head, back, foot and jaw aches. Oh yeah, and a ridiculous intolerance to heat - I was sweating at the drop of a hat and had a hard time shutting it off. Fever hovered between 99 and 100.6 throughout. I noticed a bite on my right hip (likely from Memorial Day weekend or so) around the time this started, but no tick and figured it could have been anything...a spider bite, perhaps. Was even thinking about a mild case of West Nile...
Saw the Doctor last Thursday and sent me for bloodwork, including Lyme tests. Sunday (Fathers Day), I woke up to see I had developed an EM rash. Saw the doctor again on Monday and he confirmed the rash and a positive ELISA screen. OK - pretty clear indication there. 21 days of amoxicillin horse pills, here I come.
Interestingly enough, my Western Blot came back negative. Doc said I needed 2 of three to be positive, but only had 1. I'm to continue antibiotics nonetheless due to my clinical presentation. Relatively encouraged by his attitude and willingness to discard the WB result (he mentioned it can come back negative if done too early in the course of the disease).
So I've read a bit about the WB test and understand there are IgG and IgM components, and have gathered that false negatives are somewhat common. I requested a copy of the results so I can see for myself and learn more.
OK - the question: Has anyone else here presented the classic rash, received a positive ELISA test but a (according to CDC) negative WB? In such cases, has Lyme still been an issue...and ever later confirmed?
Incidentally, I'm also a little concerned about the possibility of Babesia since propensity for sweating seems to be my most impactful symptom, even today. That said, I haven't had an issue with coughing or "air hunger" and my red blood cell count came back normal. No jaundice, either. Spleen is a little swollen, though, according to the doctor. The plan is to complete the 21 days of antibiotics and check on how I'm doing after that.
Long first post, I know - I'm sorry. To sum up: 1. Looking for stories from folks who have experienced (or seen) EM Rash, ELISA+ and WB-. 2. Babesiosis: Does it always present things like air hunger and jaundice or is weakness/headache/sweating enough to consider it a possibility?
Thanks in advance!
Posts: 8 | From Lehigh Valley, PA | Registered: Jun 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi and welcome to lymenet!
I don't have the same story as you, but I can tell you that many people with lyme never have a CDC positive western blot.
For you to get a positive ELISA is practically a miracle.
The CDC criteria are too strict and were never meant for diagnosis, just surveillance criteria.
Plus there are lots of reasons why people have a seronegative lyme test:
Babesiosis symptoms can vary and the infection can be mild to severe. Your symptoms are enough to consider the possibility that you have it.
Here's what I see so far:
You are taking Amox, and you need doxycycline 200 mg twice daily for many weeks.
Maybe he didn't want to give you doxy in the summer due to sun senstivity issues, but you need what will really work now before your infection becomes chronic.
You definitely have lyme, so you need more aggressive treatment and a good eval for for coinfections like babesia, bartonella, ehrlichia,etc. Some of those infections require different meds and the Amox or doxy won't cover them.
If these infections are not treated NOW and with enough meds, they can disseminate throughout your body and become chronic...and that's when you REALLY have problems....extreme chronic illness for life, possible disability or worse.
Find a good LLMD fast...I'll send you a private message since you are in my state.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thanks for the prompt response, and especially for the PM!
When the doc recommended amox (875mg 2x daily for 3 wks), I asked about doxy and he said he preferred not to prescribe it due to the potential for esophagitis and said that amox is just as effective for early Lyme therapy. After doing some more research, I can clearly see he's (loosely) following the IDSA guidelines, and I've read/seen enough (ILADS, UOS) to know the IDSA stance on Lyme is not popular for those dealing with it or dedicated to treating it. Then again, my doc discounted the WB, so I thought that was worth some points.
Still, I thought that since it was early enough (started treatment 2-3 weeks post-bite), I'd be OK with amox. Is this seriously not true? My symptoms abated somewhat by the time I got the ELISA result back this past Monday, and I've been feeling generally better each day since Monday. In fact, over the past two days, if I didn't know what was going on, I'd probably have ignored any minor twinge of pain or pulse of heat.
Not to say "you're scaring me," but you're kinda, well, scaring me.
Regarding the Babs, I was also under the impression that it wasn't as critical to catch that in the early stages and that, if found, it can be treated effectively with a couple different combinations of drugs (I'm aware abx are useless - nasty protozoans!).
Posts: 8 | From Lehigh Valley, PA | Registered: Jun 2011
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posted
What I have found with doctors and guidelines is they will usually take the SHORTEST course of recommended antibiotics and then shorten it by another week before they prescribe it to you. If he gave you 3 weeks of amox, then chances are the guidelines actually recommend 4 weeks.
Hey, at least the guy was willing to acknowledge Lyme which is more than I can say for some of the doctors I've seen!
The last thing we want to do is scare anyone, obviously. Lyme disease and coinfections are quite capable of doing that on their own, if one is well informed!
Amoxicillin is thought to be as effective as doxy for early presentations of Lyme, but only at a much higher dose than what you've been given. ILADS guidelines recommend 3000-6000 mg per day of oral amoxicillin for a longer period than 3 weeks.
Posts: 156 | From Virginia | Registered: May 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
kpantz,
Didn't mean to scare you, but to convey the seriousness of chronic tick-borne diseases.
If I could make sure they were erradicated now, I would do whatever it took to do that.
I cannot stress enough how important it is to see a LLMD and make sure you are getting enough of the right medication and that you are evaluated for coinfections that need treated.
It might cost you some money, but you will have your good health for the rest of your life and that is soooo much more important.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Dr Burrascano says you should take meds until you have been symptom free for 4 weeks, with a minumum of 6 wk total...
see page 19 "Early Localized Disease" and page 14 "Penicillins....."
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
When you find out which bands were positive, be sure to post them here.
I'm moving this to Medical Questions for you. You will receive more help there.
WELCOME!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From p. 7 of Burrascano Lyme Treatment Guidelines:
"After a tick bite, serologic tests (ELISA. IFA, western blots, etc.) are not expected to become positive until several weeks have passed. Therefore, if EM is present, treatment must begin immediately, and one should not wait for results of Borrelia tests. You should not miss the chance to treat early disease, for this is when the success rate is the highest. Indeed, many knowledgeable clinicians will not even order a Borrelia test in this circumstance."
And, here is what it says on the ELISA screening test:
"The screening test and/or Western Blot for b. burgdorferi antibodies may be falsely negative in early stages of Lyme disease, including the period when erythema migrans is apparent."
So, the message to you is that the lyme tests you had are not direct tests. They do not look for the lyme bacteria. Instead, they look to see if your body has made antibodies to the lyme bacteria.
It takes time for the body to make these antibodies. Therefore, both the ELISA and the Western Blot can be falsely negative if the person is tested right after their bite.
You were tested right after your bite. 2 weeks is right after the bite.
So, other peoples' experiences are not going to be relevant to yours unless they were tested exactly as many days after their bite as you were.
Rather than look to other peoples' experiences, why not take the word of the experts--Burrascano and the warning right on the lyme tests.
You were tested too early to expect a positive result. The fact that you got one in spite of that is a strong indicator of lyme disease.
I suggest you read and STUDY the Burrascano Guidelines and get yourself to a lyme doctor to ensure that you get rid of this disease now when it is easiest to do so.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
kpantz:
I'm glad you are at least on some medications. I suggest you find an LLMD ASAP and have them prescribe a longer course. At least a month if not more just to be sure. 2-3 weeks won't be nearly enough for lyme.
Regarding Babesia. I'd say you have it from the description. As. Dr. Burrascano says, "there are no sweats with lyme"...sweating is eaither Babesia or Bartonella. Babesia testing is worse than Lyme testing.
Find an LLMD ASAP!!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
Huge thanks to everyone who has responded so far. I'm taking all the caution and advice to heart. I'll start looking into seeing a LLMD for sure.
As with most people, cost is an issue for my family. Is it usually the case that LLMDs won't take insurance, or is there a faction of "traditional" physicians out there that are Lyme literate? I know, if there's somewhere to spend, it's on your well-being, but there are some real limitations I'm dealing with.
Posts: 8 | From Lehigh Valley, PA | Registered: Jun 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
The good news for you, kpantz is that your treatment regime shouldn't be extremely long compared to alot of us who have been treating for a couple years or more.
That means less money out of pocket....but it's worth the money to he healthy.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
The good news is you caught this early. That is promising. I'm with others in that you should see an LLMD. If money is an issue, you may have to sacrifice a few things in the short term. Borrow the money if you have to.
I say this because if you don't treat this appropriately and nip it in the bud, you are in for many more problems down the road and a heck of a lot more money in trying to get rid of things than if you just treat it now.
Also...my LLMD doesn't take insurance but I have submitted mine to the insurance company and have been reimbursed 80% of the bill. So look into your plan and see if you could do something similar.
Good luck!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
Thanks again, everyone. I got a recommendation for an ID specialist over in NJ and, after a bit of Googling, he seems to be relatively well regarded. More importantly, my neighbor across the street - who had a bad bout with early Lyme (hospitalized) - had very good things to say about him.
I will report back next week after I meet with him and get my WB results in the mail.
Appreciate the support and advice so far!
Posts: 8 | From Lehigh Valley, PA | Registered: Jun 2011
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I'm sure you mean Dr. D. Given that your case is so early and you have gotten early treatment you probably will do well with him. He used Igenex and will test your for co-infections and treat them accordingly.
Most of us freak when we hear I.D., as they are not a friend of those of us with lyme but if it's Dr. D with an early case as yours I think you will be in good hands.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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So I finally got my hands on my ELISA and WB results:
Total AB: 1.51 (>1.10 = positive)
IgG bands 23, 41 positive IgM band 23 positive
...and now I'm confused. Seems like a pretty poor showing, and now I'm doubting my diagnosis, which would be a bad thing - I don't like unexplained illnesses.
Now I read on http://www.canlyme.com/wb.html that "studies have shown that the first band to show up on a Lyme disease patient's IgM blot is usually the one at 41 kDa, followed by the OspC band and/or the one at 39." I have 41 and 23 like it says (flagella/OspC), but on the IgG blot. I'm thinking that seeing OspC on both is a fair indication if it's highly specific to Bb as I'm reading.
I've been on the initially prescribed 21 day amox regimen (feeling pretty much back to normal, too!) and am seeing the ID specialist next week. Wondering if another WB would be useful, but unsure if the abx will play a role for better or worse.
Why a stronger presence on IgG than IgM? I thought the latter was indicative of fresh, active infection while the former indicated previous exposure. Given the acute illness from 6/11-6/18 and the EM rash on 6/19, I figured this was an open and shut case. Should I be doubting this now??
Posts: 8 | From Lehigh Valley, PA | Registered: Jun 2011
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posted
Well... it's possible this was not your first exposure. One very important factor in presentation of symptoms is the state of your immune system. Perhaps you normally have a very strong one, and your body has been able to fight it off until this last bite.
I would not stress over the test results, though I know it's hard not to. Right now I would focus on getting the meds you need to hopefully eradicate it.
Since you seem like you've already done a lot of reading and learning, I wonder whether you are open to trying to educate your primary doc? I don't know how long it will take for you to get into the LLMD, and I know cost is a concern. I am thinking that we are not going to increase the LLMDs unless we start talking to our docs and pushing the issue. Bring the Burrascano guidelines. Share your worry about it becoming chronic. Ask for the higher dose.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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