I've tested one time before for Lyme with a specialty lab and had 12 total bands between the IGM and IGG, yet test was overall negative.
That was over 2 years ago. Shortly after the test, had 2 months of heavy iv abx, no improvement in symptoms and stopped tx.
With my abx course of 2 years ago, would it still be to my advantage to do a Doxycycline challenge for a few weeks and then stop and then re-test with another Lyme Western Blot?
I have the Doxy but don't have a LLMD who will say whether the challenge is helpful or not?
My question is: How likely will several weeks of oral Doxy abx light up some of the old IND bands?
I dread taking doxy for it makes me tingle all over miserably and my main 3 year long symptom is burning tingling of the feet and hands...I have other symptoms, all neurological.
Feel free to share your experiences, doctor's recommendations etc. Doxy dose, duration etc. I understand that one is to be OFF any abx 10-14 before testing?
I am pretty sure the doxy won't hurt me, but how likely is it to bring about a more accurate Lyme western blot?
Regards, MB
Posts: 247 | From The Country | Registered: Oct 2007
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posted
Not sure if it'd increase the sensitivity of the WB, but my question would be, why does it matter?
WBs aren't accurate. I know non-LLMDs put a lot of stock in them, but nobody here should.
If you have been diagnosed with Lyme or tick infections, find a doctor to treat? If seeing a non-LLMD, would they treat properly even if WB is lit up?
Posts: 584 | From NY | Registered: Feb 2009
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posted
OK, appreciate the responses, but need to clarify some things.
1: To Lymebytes, I actually had 2 months of fairly strong tx in 2008 which included 6 weeks of IV Rocephin, no improvement.
2: I have NEVER been treated for co-infections other than about 10 days for 'suspected' Bart, so again, no response.
3: To the others, I suppose I want to see more bands turn positive (or do I?) because I generally have always been very factual, black/white in my views on things.
I AM skeptical about some of what I read concerning Lyme treatment and testing, but NOT about the symptoms it can cause, many of which many here struggle with, as do I, I just wonder what is REALLY causing the sx, hence my need for confirmation?
Confirmation would set my mind at ease, and IF, I can get that with a more accurate test result via ABX challenge, I would do so, but still don't know what direction to go?
I had a LLMD. One of the few in my area and of supposed good reputation. I liked the MD, but lack of response and huge expense sent me in other directions. Yes, I am in pain, but didn't want to be in pain and broke too...
Just don't know where to go with this? Sometimes wonder, do I just have idiopathic neuropathy, MS or ? I am currently generally healthy and feel fine other than terribly painful neurological pain (mostly feet and hands) and 3 years of insomnia.
Yes, Lyme can and does cause these sx's, but so can many other things. Have seen several neurologists, they don't really seem too interested in giving this much thought
So, is the abx challenge really just not well understood?
MB
Posts: 247 | From The Country | Registered: Oct 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I am going to be watching this thread because I am actually wondering the same thing.
I had only bad 41 positive and the ehricilia (spell??) come up positive for a past infection.
Now since I have 2 doses left of doxy, but symptoms are still around (better but still here) I want to test again and see what happens.
I am also a factual scientific person, I want proof that I am not suffering from something else and going through unneeded abx treatment, although deep down I think I know this is definitely Lyme.
posted
I too am interested..Today I'm going to an LLMD costing $725 and $350 per follow-up..My concern also is "Am I wasting my money?"..I had a positive Elisa and 2 bands positive on the WB (12 and 58)..I then waited 2 weeks (no ABX) and went to an infectious disease doc..His tests came back neg...He prescribed Doxy 200mg for 3 weeks anyway..I felt no change in anything..But I really have many new symptoms since being bitten 3 times last summer..I'm not debilitated but I don't feel right..Sometimes I think this whole Lyme thing is a crap shoot and it really makes me wonder why it's not taken more seriously by regular drs..When I hear patients taking ABX for YEARS I become really skeptical of all this..
Posts: 4 | From Westchester County, NY | Registered: Feb 2010
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posted
Interesting to hear from others with similar perspectives.
I did have 12 bands that responded with at least IND (which I also question the meaning of?) Of the 12 bands, 8 were ** Lyme specific.
I suppose IF more of the IND had been a single + and I had some response to tx, I would believe all of this?
My symptoms are extremely unpleasant - near total inability to sleep most nights for almost 4 years and fluctuating burning skin, mostly feet and AFTER ABX tx, burning spine.
The 15 minute neuro visits always end in 'you probably have neuropathy', don't know why?
Despite my lack of restful sleep, I am NOT tired most of the time, can think fairly well which seems unlike other's complaints?
I've had other posts here to effect of, is it possible to have so many bands and the test be positive to something OTHER than Lyme?
Only other test I've had that was not normal was a Labcorp EBV which was high positive, is that causing the Lyme WB to react?
I would GLADLY tx Lyme if I knew it was the threat and if there was some sort of positive response. Again, I have NOT ever been tested for co-infections either.
Thanks for any further input, need to make some decisions about this? Have just treated neuropathic sx with Gabapentin and it is NOT the answer
Regards, MB
Posts: 247 | From The Country | Registered: Oct 2007
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posted
MB - I can really relate to what you are saying, I have only been on Doxycycline for about 2 weeks now and some of my symtoms are better but only had one day of a Herx ( felt like I had the flu ).
So I too wonder if I actually have Lyme and as you are well aware the symtoms can be SO many different things.
I think a good evaluation by maybe a different LLMD could help determine about the co - infections either by testing ( but of course more $$ ) or just by symptoms maybe.
My son is being treated for Babesia even though his test was negative because of his symtoms and they have almost now disappeared after 4 Months of treatment.
The symptom of burning skin you have in your feet is it all the time or does it come and go? and does the skin look any different or have any discoloration on the soles?
What kind of exposure have you had to ticks in the past?
I know many people do not remember being bitten but a constant exposure to ticks especially if you where not removing them "correctly" ( like me) really makes me think about Lyme.
Posts: 448 | From minnesota | Registered: Feb 2010
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posted
I am also very confused on what I should do. My doctor stated that i tested positive for late stage lyme disease. The bands that I had present were 18, 28, 39, 41, 66, and 93. However, my acute result was negative showing only band 23 present. He then stated in a letter to me that the problem may not be Lymes disease, but wanted to treat me before going forward with other interventions (to treat the Rheumatoid Arthritis for which they found markers for).
Posts: 10 | From Wisconsin | Registered: Apr 2010
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My burning feet are brought on my what USED to be normal contact: things such as walking, standing still, even regular closed shoes. So no, I do NOT have it all the time.
BUT, the burning/tingling USED to just be the feet. It is now my hands, rear-end while sitting and spinal column. Burning coverage increased after I stopped ABX 1.5 years ago.
Not so sure I can find another 'good' LLMD near me? I could go back to old LLMD, but really question the dx?
Yes, I have had tick exposure. I live deep in the country and have my whole life, I DO have risk factors even though my state is not reknowned for Lyme disease.
Was completely ignorant of Lyme disease, symptoms etc. To be completely honest, I can only remember removing about 8-10 ticks that I am aware of. Never knew to look for the rash.
I am guessing IF this is what I have, that my body basically recovered and I just have residual neurological dysfunction, again, just a guess?
None of us would have these questions with a better test. And I would NOT question the tx if there was more news of people getting better? Is there chronic Lyme or just residual problems?
Again, I do not question anyone here...I know we all just seeking answers to our problems, but I am just a skeptic in the same situation and I do NOT put complete trust in any doctor, be it LLMD or CDC-mind docs. When there's proof and response, well yes I can believe, but I personally have not experienced that, at least yet
What are others' thoughts?
Posts: 247 | From The Country | Registered: Oct 2007
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posted
I fully understand wanting a black/white answer as if you have Lyme or not.
Unfortunately, Lyme testing isn't there yet. I went to my doctor with the same mindset, wanting full confirmation via testing, and my doctor basically told me that Lyme/co-infections aren't the diseases to have if you want 100% accurate lab tests.
That said, I did have a positive Igenex IGM, but it was pretty much the minimum necessary for a positive. So I was still a little wishy-washy towards a diagnosis. I tested positive for ehrlichiosis and spotted fever (and typhus)... so became a bit more convinced as to Lyme, or at least some tick disease involvement. After taking Doxy for a while, then Omnicef, I then tested positive for two strains of Bartonella -- more evidence. My doc then had me drop antibiotics, and that's when my symptoms really came out -- and I herxed when restarting meds, and am now finally feeling at least a little better.
So... I would suggest getting tested for all co-infections if you haven't already. If you test negative for Lyme + co-infections, and get no response (good or bad) from antibiotics, then yeah, maybe it's not tick related. You could do a couple of trials of two different antibiotics for several months (3-6 months is what my doc usually tests with). If you get no reaction from either, no herx... nothing... then I personally would consider something else may be the cause.
Posts: 584 | From NY | Registered: Feb 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme Disease is a "clinical" diagnosis. No matter how bad you want validation, and we all have been there, it is still a clincial diagnosis.
The test can be used to back up that diagnosis, but sometimes it can take months or more of treatment to get a positive test result.
It took me 1 year of treatment to get a CDC IGM positive test result. That then backed up my LLMDs clinical diagnosis!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
ive had many of these questions. my dr family doesnt believe i have lyme. i only have 3 bands positive on igg.
however i go with the saying the most logical explanation is usualy the correct one. that being said i have done TONS of blood work with nothing abnormal. MRI with nothing abnormal. several drs exams with nothing abnormal. i had a bite on me that lasted a month. i was going to a park daily that had tons of deer. i had flu symptoms 4 weeks after bit. i have neuro problems similar to those described for a lyme dx. it just seems to me that lyme is the ONLY logical choice. i have to treat, might as well assume its lyme that needs to be treated.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I agree with junkyard; if you have excluded every other illness it could possibly be and all symptoms point to lyme, you have to treat.
What other option is there! Treat and possibly get well, or don't treat and never get well.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I appreciate the feedback, I figured others would have the same apprehension.
One contrast I have to a few of the others is that I was very non-specifically 'ill' for several years BEFORE the neuro problems became extremely unpleasant in 2006.
For several years before 2006, I was beyond tired all of the time, actually had trouble staying awake driving my regular route. Also had a year long respiratory ailment and lower GI problems. Just lived with it and did NOT go to the doctor for I was not financially able at the time.
About the times these sx's things ended (thankfully), the nerve pain and near inability to sleep began as did single ear tinitus and nothing has stopped since then.
My reason for mentioning this is, 1: IF I have been exposed to Lyme or co-infections, I'm figuring it was many years ago, perhaps 8 or more years.
Can people overcome this that far away from infection? Again, I can still function in my work, home etc but it is extremely difficult as I sure others can relate, if perhaps not for all the same symptoms? I sometimes have a few 'nerve' pain free or reduced hours, but usually chalk that up to times of low stress and my gabapentin working?
I really had some hope 2 years ago when the Lyme test came back, negative, but with a fairly large immune resposne to ?something? Those 8 IND are unsettling, if just 1 or 2 would have be a single +, the test would have been positive, both IGG and IGM. This is my whole reason for raising the notion of ABX challenge. Particularly 2 years post test and tx?
I know my posts are long, just trying to gain somne informed direction. I certainly believe the disease is real and causes my problems as well as other people's sxs, just wonder about the reality of tx success, particularly for neuropathic pain etc?
As always, I read and welcome all responses.
MB
Posts: 247 | From The Country | Registered: Oct 2007
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quote:Originally posted by MBB3: My reason for mentioning this is, 1: IF I have been exposed to Lyme or co-infections, I'm figuring it was many years ago, perhaps 8 or more years.
Can people overcome this that far away from infection?
If you are asking if you'll be 100% better again, maybe not? But you should see some improvement at the very least, and maybe can be close to normal again.
My doctor thinks I was bitten 10+ years ago. So choice is to ignore horrible symptoms, or treat and hope for some improvement.
Not sure if you mentioned this, but were you tested for co-infections too? And you can try Doxy to spur on a positive WB... it won't hurt to try it (or any Lyme-hitting antibiotic), for several weeks, stop, then retest. But if Doxy makes you extra sickly, you may have your answer right there.
Posts: 584 | From NY | Registered: Feb 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think many ppl have gotten well and moved on with their lives. Most of them are not hanging around here on LN. And yes I know ppl that have been ill much longer than you and have recovered completely.
The reality is that most likely you are in it for the long haul. Recovery could take many months and likely a few years. Not to be a downer, thats just the reality that I see in most cases. But yes, I do believe you can be treated successfully. Almost all of us have had the neuro stuff.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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A few years is NOT a downer to me, IF I know I have the right battle?
I am still fairly young and the last few years have taught me some very hard lessons, mainly the pain problems.
If there is light at the end, even if a few years, I am up for it...I think more testing will follow to serve as a guide map.
Posts: 247 | From The Country | Registered: Oct 2007
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posted
MBB3...I just wanted to share with you that it is MY opinion that IND can definitely mean positive. They did in my case. I tested CDC positive through Quest and Igenex. I noticed that some of the positive bands on Quest were IND on Igenex. So I know I was positive for those IND bands on Igenex since they already showed up as positive on my Quest test.
So to me I think that those IND bands are actually positive.
Anyhow...just wanted to share that with you.
I don't see any harm in treating for Lyme. At least you will be treating for something rather than nothing. If you aren't convinced of the lyme you can still research other avenues while treating for the lyme. That way you are covering all of your bases.
Take Care! Pam :-)
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
MBB3 - Just wanted to mention if Lyme is causing my symtoms I think it was dormant for close to 8yrs as all my symtoms came on so fast ( about 1-2 months ) it literally scared me to death, this all came on during a period of HIGH stress.
Prior to that I had severe hearing loss, repeated sinus infections and knee trouble that no doctor could find any reason for.
So if dormant who knows what could send a person into a full blown assault from the bacteria.
I too have a burning numb like feeling on the bottom of both feet and also on back of thighs/hip area.
Unfortunately my feet also have tissue changes and discoloration.
I think you should go ahead and do the challenge if it would help set your mind at ease.
And all the problems you had prior to 2006 that just mysteriously disappeared??( CLASSIC for Lyme disease ) symtoms hang around for a while then seem to resolve or stabilize and then something else goes wrong and on and on it goes!!
Posts: 448 | From minnesota | Registered: Feb 2010
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posted
A better way to go is to do the blood smear and look for BLO's and Babesia. You most likely would not see later lyme/borrelia this way but to be able to see 2/3+ organisms that are part of the complex of Borrelia + co-infections should inspire a person to keep getting treated. Unfortunately thanks to a federal law called "CLIA" Clinical Labs Improvement Act, the Fed decided ordinary MD/DO office doctors were not trustworthy to do there own testing in there own lab without first jumping through a lot of hoops and paying out extra cash. In other words the Doc can still do the test but will never get paid for the time and trouble to do so. Hence many are forced to depend on less reliable serology, PCR's and Blot type tests instead.
Beachinit
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
My thinking is like that of another poster, if you have ruled out everything else then it's a better possiblity it is Lyme.
I am currently talking to a LLMD's staff via the phone to see about a cheaper way to go about getting the Western Blot and Co-infections test through Igenex.
The office manager is looking at different panels and tests to see if we can get this price down a bit.
I took my last doxy today so hopefully it helped get stuff moving around so I will test positive and feel better about the DX.
I think I said this before, but deep down I think I know it's Lyme.
My symptoms have been changing and may have even started in 2007, where I was previously thinking 2008.
I never remember a tick bite or a rash. I know I have had ticks on me but that was as a child. I've only ever had the "flu" once when I was 7...could that have been the beginning? I don't know.
I do know I was bit though because the ehricilia test came back positive.
I guess if you take ABX and nothing changes, nothing better or worse, then maybe it is not Lyme.
Do new symptoms appear when taking ABX? Can herxing result in new symptoms?
This is all so confusing so I definitely agree it would be so much easier with a black/white picture with no grey area in between!
Do new symptoms appear when taking ABX? Can herxing result in new symptoms?
Definitely can happen. My doctor says he sees it happen all the time.
And it happened with me, with my Bart symptoms showing up after starting a higher dose of Doxy.
If you have a positive ehrlichia already, I think most LLMDs will treat you with several months of Doxy at the very least, regardless of what the WB says. If you have an iffy WB, but symptoms of Lyme, I expect they'll diagnose you with Lyme. Ehrlichia = tick bite exposure, so one part of the puzzle has already been answered. And co-infections would logically increase the odds of being exposed to Lyme, as the tick that bit you wasn't exactly in top notch health.
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