After seven years of persistent illness, disability, and misdiagnosed ailments, I've finally unveiled the source of this mess. Yesterday, my blood work showed that I tested positive for bands 39 IgM and 41 IgG, but my test (from Labcorp) was negative.
My research has led me to believe that's enough to conclude I have an active Lyme infection. My physician (an LLMD) agrees about the likelihood of an infection, but of course he'll never say so with 100% accuracy.
I don't have reason to believe my symptoms are due to anything else. Right as I became ill in 2005, I spent a lot of time working in the woods where a family member of mine contracted the disease, so it makes sense. I also live in one of the worst Lyme areas in the US.
It's too bad I didn't know (nor did my doctor) how crappy IFA tests are when I got tested back in 2007. I've been on Doxy for 3 weeks now, and I haven't been feeling much of anything.
I want to say I'm slowly feeling better, but I'm not sure. I have mild muscle pain, tiredness, and sometimes nausea after taking my doses, but nothing unbearable.
I work out, despite feeling ill (those endorphins keep me sane), so it's hard to tell what causes what. About a week into treatment I had a day of what I think was Herx (headache, moderate muscle pain in the forearms, and flushing in the forearms), but since then, it hasn't returned.
I am currently on 100 mg bid, and moving to 200 mg bid in a few days. I've read Doxy should be dosed at 300 mg or higher daily to reach concentrations that allow it to pass through the blood brain barrier, so I'm hoping this increase in dosage will have some effect on the neuropsychiatric symptoms I'm dealing with (depression, anxiety) and/or the persistent pressure headache and fatigue.
I suppose it's possible that cytokines from my immune reaction could be indirectly causing these symptoms as well. The Lyme may very well still be outside the nervous system. Who knows...
My questions/comments are the following. Please feel free to answer them or comment in general_____________________
[1]. Is there any who has had late stage Lyme and has gotten better with Doxy after a reasonable amount of time? I see forum posts where people say it took them months or even years to get better.
Surely, this can't be the average case. Sounds pretty ridiculous to me, but if that's the way the cookie crumbles, then so be it. ___________________
[2]. I really want to get the Western Blot done at IGeneX, but I feel like I'm just throwing away money. I'm close to getting re-tested by MDLabs in NJ.
They provide a bit more thoroughness in their testing over CDC-based labs, but not quite like IGeneX. The upside here is that I'm not pre-charged for the lab test, and they'll submit to my insurance before billing me.
My question here is if I produce a positive IGeneX test (via their criteria, not CDC), will I be reported to the CDC, and will this be enough to get my insurance to cover IV antibiotics if they're needed down the road. _______________________________
[3]. Anybody ever used MDLabs? Anything good to say about them? And lastly, if anyone can think of a striking reason to go to IGeneX, considering my situation, please comment. _______________________________ As you can see, I'm quite adamant about getting this taken care of. I'd like to get my life back ASAP. I'm under quite a bit of familial pressure to get well fast.
Thanks for listening!
P.S.: This is cross posted at MDJunction. I just found LymeNet, and there seems to a lot of experienced people here, so I figured I'd post here as well.
**edited out the lines so the thread is more readable**
-------------------- This information is of a general nature and is not intended to be used as medical advice. I am not a practicing physician. Please use this information at your own risk. Posts: 7 | From Pennsylvania | Registered: Oct 2013
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posted
After seven years of persistent illness, disability, and misdiagnosed ailments, I've finally unveiled the source of this mess. Yesterday, my blood work showed that I tested positive for bands 39 IgM and 41 IgG, but my test (from Labcorp) was negative.
Many people test negative at Labcorp - like me. There is a good chance you have Lyme but it wouldn't hurt getting tested at a couple Labs.
There are many people who either due to their immune system, the age of the infection or the strain, get differing results at different labs.
StonyBrook, IGenex and Imugen all use their own test that don't use the lab B31 strain. In my case, getting tested at multiple labs with varied strains got me 6/10 antibodies but never more than 4/10 on any one test.
I also was positive by C6 at 3 labs. That gave me total confidence along with the Western Blots that it was real. That was important to me since the treatment has been long and difficult.
You need to get the co-infection testing done also. IGenex is probably your best bet. Stonybrook is also good.
My research has led me to believe that's enough to conclude I have an active Lyme infection. My physician (an LLMD) agrees about the likelihood of an infection, but of course he'll never say so with 100% accuracy. [tsk]
If someone told you 100% based on 41 and 39, they would be stretching reality. Further testing can give you the confidence you will need. Negatives mean little at this point but accumulative bands and or co-infections are meaningful. You need to know all the infections.
I don't have reason to believe my symptoms are due to anything else. Right as I became ill in 2005, I spent a lot of time working in the woods where a family member of mine contracted the disease, so it makes sense. I also live in one of the worst Lyme areas in the US.
It's too bad I didn't know (nor did my doctor) how crappy IFA tests are when I got tested back in 2007. I've been on Doxy for 3 weeks now, and I haven't been feeling much of anything.
Yes its true. It took me 8 years and I'm paying for it now. After 8 years Doxy did nothing for me.
I want to say I'm slowly feeling better, but I'm not sure. I have mild muscle pain, tiredness, and sometimes nausea after taking my doses, but nothing unbearable.
I work out, despite feeling ill (those endorphins keep me sane), so it's hard to tell what causes what. About a week into treatment I had a day of what I think was Herx (headache, moderate muscle pain in the forearms, and flushing in the forearms), but since then, it hasn't returned.
I am currently on 100 mg bid, and moving to 200 mg bid in a few days. I've read Doxy should be dosed at 300 mg or higher daily to reach concentrations that allow it to pass through the blood brain barrier, so I'm hoping this increase in dosage will have some effect on the neuropsychiatric symptoms I'm dealing with (depression, anxiety) and/or the persistent pressure headache and fatigue.
Hope it helps but I doubt it will. I was on Ceftin and Tindamax for 8 months and it made a big difference but some bad neurological problems remain along with severe fatigue.
I suppose it's possible that cytokines from my immune reaction could be indirectly causing these symptoms as well. The Lyme may very well still be outside the nervous system. Who knows...
Who knows...Is right.
My questions/comments are the following. Please feel free to answer them or comment in general. ______________________________________
[1]. Is there any who has had late stage Lyme and has gotten better with Doxy after a reasonable amount of time? I see forum posts where people say it took them months or even years to get better.
It did not help me. It was the first abx I was treated with.
Surely, this can't be the average case. Sounds pretty ridiculous to me, but if that's the way the cookie crumbles, then so be it. ____________________________ [2]. I really want to get the Western Blot done at IGeneX, but I feel like I'm just throwing away money. I'm close to getting re-tested by MDLabs in NJ.
IGenex or Stonybrook or both preferably - different strains. Co-infections TOO!
They provide a bit more thoroughness in their testing over CDC-based labs, but not quite like IGeneX. The upside here is that I'm not pre-charged for the lab test, and they'll submit to my insurance before billing me.
My question here is if I produce a positive IGeneX test (via their criteria, not CDC), will I be reported to the CDC, and will this be enough to get my insurance to cover IV antibiotics if they're needed down the road.
No _____________________________
[3]. Anybody ever used MDLabs? Anything good to say about them? And lastly, if anyone can think of a striking reason to go to IGeneX, considering my situation, please comment.
Yes, I went Columbia and they used them for some co-infection testing. I was told they were good. __________________________________ As you can see, I'm quite adamant about getting this taken care of. I'd like to get my life back ASAP. I'm under quite a bit of familial pressure to get well fast.
Its going to be a long road. Sounds like my story. Good luck..
**edited the lines again**
[ 10-29-2013, 10:27 PM: Message edited by: Lymetoo ]
Posts: 51 | From California | Registered: Aug 2013
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posted
miyamotoi: Thanks for the reply. I appreciate it. Jeez, this forum technology needs updating...
quote:Many people test negative at Labcorp - like me. There is a good chance you have Lyme but it wouldn't hurt getting tested at a couple Labs.
Not sure what I'll do here. I already got the kit from MDLabs, so I may wait to see what those results are. And my insurance picks it up, I could go for co-infections if I wanted. I got co-infection testing done at LabCorp. Negative. Mycoplasma was positive, but apparently that's common. I also got a pneumonia vaccination a few years ago. I really don't have a reason to think LabCorp wouldn't be accurate for co-infections. I know about different labs using different strains and all that, but I figured the major issue surrounding Lyme is that CDC-based labs are neglecting to include important bands in their tests, not so much the quality of their testing.
I had C6, PCR as well....negative. I really don't see the utility in paying a bunch of money to have an extensive panel done through IGeneX, if all I really need is a positive WB.
quote: If someone told you 100% based on 41 and 39, they would be stretching reality. Further testing can give you the confidence you will need. Negatives mean little at this point but accumulative bands and or co-infections are meaningful. You need to know all the infections.
Is 39kDa not the most specific antibody of them all? Accumulative bands would be nice though.
quote: Yes its true. It took me 8 years and I'm paying for it now. After 8 years Doxy did nothing for me.
You took Doxy for 8 years and didn't try to augment it? I ain't having that. No way siree.
quote: I was on Ceftin and Tindamax for 8 months and it made a big difference but some bad neurological problems remain along with severe fatigue.
Good to know. Thank you. Tindamax apparently is the "cyst buster". Ceftin -- I see it's prescribed for Lyme, as it does cross the BBB. I couldn't afford IV drugs without insurance. Lets hope I don't need them.
quote: My question here is if I produce a positive IGeneX test (via their criteria, not CDC), will I be reported to the CDC, and will this be enough to get my insurance to cover IV antibiotics if they're needed down the road.
No
So this means I need to be CDC-positive to get insurance to cover IV meds?
quote: Yes, I went Columbia and they used them for some co-infection testing. I was told they were good.
Awesome. My LLMD actually recommended them as well, but we went with LabCorp first, since it's covered. He didn't even suggest re-testing. He said "you're positive for a highly-specific band...keep taking the meds".
quote: Its going to be a long road. Sounds like my story. Good luck..
Thanks a lot. Yeah, I'm glad this hellish journey is starting to end. It's much worse to be sick and not know what from, than to be sick and treat it, even if it takes a while. I pray to god this isn't a long job though. I've suffered enough. You wouldn't believe the number of unneeded medical procedures I've went through in hopes of finding relief.
Lymetoo:
Fantastic! Thank you. Confirmed everything I originally thought. The real issue at this point is treating it.
-------------------- This information is of a general nature and is not intended to be used as medical advice. I am not a practicing physician. Please use this information at your own risk. Posts: 7 | From Pennsylvania | Registered: Oct 2013
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posted
miyamotoi: Thanks for the reply. I appreciate it. Jeez, this forum technology needs updating...
quote:Many people test negative at Labcorp - like me. There is a good chance you have Lyme but it wouldn't hurt getting tested at a couple Labs.
Not sure what I'll do here. I already got the kit from MDLabs, so I may wait to see what those results are. And my insurance picks it up, I could go for co-infections if I wanted. I got co-infection testing done at LabCorp. Negative. Mycoplasma was positive, but apparently that's common. I also got a pneumonia vaccination a few years ago. I really don't have a reason to think LabCorp wouldn't be accurate for co-infections. I know about different labs using different strains and all that, but I figured the major issue surrounding Lyme is that CDC-based labs are neglecting to include important bands in their tests, not so much the quality of their testing.
For what its worth, I wouldn't use Labcorp for any tick borne disease testing. The are ok for Mycoplasma Pn but not Lyme, Babesia, Bartonella etc..
I had C6, PCR as well....negative. I really don't see the utility in paying a bunch of money to have an extensive panel done through IGeneX, if all I really need is a positive WB.
The PCR is generally a waste of money unless your lucky enough to get a positive. The sensitivity in blood in late infections is a few % at best. The C6 has sensitivity problems in late Lyme but if you are positive, its got enough validation by the mainstream for insurance or non-LLMD doctors to accept. A negative C6 means little. If you were negative PCR and C6 once, don't bother testing again. What lab did the C6?
quote: If someone told you 100% based on 41 and 39, they would be stretching reality. Further testing can give you the confidence you will need. Negatives mean little at this point but accumulative bands and or co-infections are meaningful. You need to know all the infections.
Is 39kDa not the most specific antibody of them all? Accumulative bands would be nice though.
39kDA is highly specific but there are some cross reacting antigens so its not 100% - its very suspicious. The US IgG criteria of 5/10 is flawed. Most other places in the world have a 2/10 criteria but limit it to the Borrelia specific antibodies ad include VlsE for local strains.
That being said, if you want your insurance company to accept it, you will almost certainly need a 5/10 CDC positive unless you are very lucky. That's one the bummers about the overly stringent criteria - insurance companies can abuse it.
quote: Yes its true. It took me 8 years and I'm paying for it now. After 8 years Doxy did nothing for me.
You took Doxy for 8 years and didn't try to augment it? I ain't having that. No way siree.
No I took it about 3 months but 8 years after being infected. So the infection was highly disseminated and difficult to treat.
quote: I was on Ceftin and Tindamax for 8 months and it made a big difference but some bad neurological problems remain along with severe fatigue.
Good to know. Thank you. Tindamax apparently is the "cyst buster". Ceftin -- I see it's prescribed for Lyme, as it does cross the BBB. I couldn't afford IV drugs without insurance. Lets hope I don't need them.
I had good luck with oral but will probably start another round. The first round eliminated all IBS symptoms, Asthma, chemical sensitivity (weekly hives), joint and body pain reduced significantly,
very high CK came down, very high creatinine came down, very high IgE came down and more... but fatigue and neurological/psychiatric-like symptoms remains.
quote: My question here is if I produce a positive IGeneX test (via their criteria, not CDC), will I be reported to the CDC, and will this be enough to get my insurance to cover IV antibiotics if they're needed down the road.
No
So this means I need to be CDC-positive to get insurance to cover IV meds?
That depends on your doctor and insurance company but CDC positive is a sure thing - but it may only get you one round of antibiotics when with an HMO like Kaiser. You should be able to find your insurers lyme diagnosis policy online.
Use Google to search on your insurer like:
"Blue Cross" "Lyme Disease"
And see if you can find their policies. Then your doctor can work with that.
quote: Yes, I went Columbia and they used them for some co-infection testing. I was told they were good.
Awesome. My LLMD actually recommended them as well, but we went with LabCorp first, since it's covered. He didn't even suggest re-testing. He said "you're positive for a highly-specific band...keep taking the meds".
Columbia's second opinion cost me $5,000 so its tricky with insurance. I just paid for it.
quote: Its going to be a long road. Sounds like my story. Good luck..
Thanks a lot. Yeah, I'm glad this hellish journey is starting to end. It's much worse to be sick and not know what from, than to be sick and treat it, even if it takes a while. I pray to god this isn't a long job though. I've suffered enough. You wouldn't believe the number of unneeded medical procedures I've went through in hopes of finding relief.
You are not alone. I have Kaiser. They half assed their lame diagnosis for about 8 years before I went outside and sorted it out. They had diagnosed me with a half dozen conditions all of which resolved after Abx. DO NOT USE KAISER!
These are my views and should always be used as knowledge when talking with your doctor only. I'm a patient who has gone through a similar path..
good luck
Posts: 51 | From California | Registered: Aug 2013
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posted
I don't know how anyone but blackcompe can follow what is said when there are no quote marks. It's so hard to figure out WHO said WHAT.
blackcompe.. If the LabCorp is negative, I would consider a Western Blot thru Igenex. (costs around $250)
However, what you REALLY need is an LLMD who will simply treat since he/she will know you have band 39 that is positive. Most will be willing to treat. Getting insurance to pay for ANYTHING is always the tricky thing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
There is such thing as a challenge test. You take antibiotics for a month and it helps your body create antibodies for Lyme.
I took doxy for a month and tested positive through Labcorp.
As far as insurance covering Lyme, it's unlikely.
I was just reading my husband's policy (debating if I want it in addition to medicare). It even says they will only give antibiotics for 1 month for Lyme in their literature.
Given the premium, it looks like it may be cheaper for me to go WITHOUT his insurance and treat for Lyme on my own.
I'd say a good drug plan is pretty important.
Some Lyme docs are good at doing billing and mark stuff like "unspecified bacterial infection" to get stuff covered.
Posts: 2839 | From California | Registered: Jul 2012
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posted
blackcompe.. If you do the challenge ... then be sure to go OFF the antibiotics (abx) for 10-14 days after taking abx for one month. Then test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
For me, I tested CDC positive while still taking antibiotics.
I followed my docs advice on that one. Those were his instructions.
When I tested without being on antibiotics was when I got an negative result.
I had another doc say I shouldn't be on antibiotics while testing and that's when I got a negative result.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
My experience with antiobiotic challenge was the same as Judies.
Stayed on abx, 3 different kinds, for the retest thru Igenex and returned positive.
But every doc is different and each doc has their own reasons, all valid.
I'm sorry but I can't follow the back and forth on this thread with all the quoting without quotation marks. It is very hard to understand.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Excuse me for taking so long to respond. I've been quite busy lately. I appreciate your responses.
I ended up getting a Western Blot from MDL and it came back completely clean for everything. No bands whatsoever.
Go figure... and this was supposed to be a "top lab". I'm not going through with IGeneX. I have enough proof.
Anyway, my doc pushed the Doxy up to 400 mg/day, but I'm only taking 300 mg due to insurance issues.
In addition, I'm starting a mix of the Cowden and Buhner protocols. Hopefully this will negate the need to start Tinidazole for L and cystic forms.
I'm also going to try continue to exercise and try to implement some foods that will help the treatment. I'm hoping something will give sometime soon.
I'll keep you all updated.
-------------------- This information is of a general nature and is not intended to be used as medical advice. I am not a practicing physician. Please use this information at your own risk. Posts: 7 | From Pennsylvania | Registered: Oct 2013
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Yeah I was utterly suprised myself, but it's all good. Thanks for the kind words.
-------------------- This information is of a general nature and is not intended to be used as medical advice. I am not a practicing physician. Please use this information at your own risk. Posts: 7 | From Pennsylvania | Registered: Oct 2013
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posted
I went ahead and got the actual results, and IgG 41 showed up, but that was it.
I tested after taking Doxy for a month, so that could have something to do with it. I'll retest at some point.
-------------------- This information is of a general nature and is not intended to be used as medical advice. I am not a practicing physician. Please use this information at your own risk. Posts: 7 | From Pennsylvania | Registered: Oct 2013
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi blackcompe:
Unfortunately the most basic point to understand about tick borne disease is there is a controversy on the diagnosis and treatment.
Band 39 is specific to the Lyme borrelia, band 41 is the flagella, specific to spirochete bacteria but not just Lyme.
The Centers for Disease Control and Infectious Disease Society keep a tight lid on what is considered "positive" for Lyme.
The IDSA sets strict treatment guidelines. Doxy alone with disseminated Lyme will not be enough (my opinion from reading / experience).
I'm really starting to wonder if I have neurolyme. I don't come close to having the neurological problems that I see people post about.
At most I mainly have moderate psychiatric symptoms, head pressure/ear plugging feeling, and fatigue, and brain fog, all of which are chronic, and bad enough to affect my ability to work to socialize, but not necessarily indicative of neurolyme.
I just added some Cowden and Buhner herbals to my treatment schedule, but I still have yet to feel a herx. I'm having some generalized muscle pain, but that's it.
I'm going back to the Lyme doc next week, and the plan is to ask about combo antibiotics and doing extensive immunological marker testing (and possibly a SPEC/PET scan).
-------------------- This information is of a general nature and is not intended to be used as medical advice. I am not a practicing physician. Please use this information at your own risk. Posts: 7 | From Pennsylvania | Registered: Oct 2013
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quote: Why are you ignoring Band 39? .. the most specific band for borreliosis.
How am I ignoring it? I'm aware it's Lyme-specific.
-------------------- This information is of a general nature and is not intended to be used as medical advice. I am not a practicing physician. Please use this information at your own risk. Posts: 7 | From Pennsylvania | Registered: Oct 2013
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