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 that Penicillins are bactericidal....it can stun the bacterial into being quiet but doesn't kill it...so when you stop the med, it can become active again.
Dr B also 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
| IP: Logged |
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