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I tested reactive on 3 bands for Lyme
I tested reactive for bands 41 KD (IGG) BAND, 58 KD (IGG) BAND, and 23 KD (IGG) BAND. Howeven I am negative on LYME DISEASE AB IGM, WB. (western blot test)
What should the next step be? I have been ill for some time. My rheumatoid factor is borderline high and my Vitamin D levels are insufficient while my calcium levels are borderline high. Negative on ANA blood test. Should I pressure my dr for more detailed testing for Lyme? What does the thee bands I tested reactive for mean? TIA! (female in 30's)
What should the next step be? I have been ill for some time. My rheumatoid factor is borderline high and my Vitamin D levels are insufficient while my calcium levels are borderline high. Negative on ANA blood test. Should I pressure my dr for more detailed testing for Lyme? What does the thee bands I tested reactive for mean? TIA! (female in 30's)
[Second half of response to you, continued from first half above]
-- You say, "Will not refer me to any specialists yet until I get those [other tests] back." 18 months is indeed a long time to wait. Having those test results, even if your current insurance company will not play ball, could be very helpful to your next doc, whether with your current insurance company or another one. It is possible that insurance will reimburse you at some level for Lyme testing and treatment, even if the Lyme doc you see is not 'in-network' with your insurance company.
If your insurance won't do that, then consider paying out of pocket to see a Lyme specialist outside your insurance plan. We have become accustomed to seeing only docs who are 'in-network' with our current insurance plans, but if your current docs are not up-to-speed, then go out of network at least for diagnosis. If you don't have the cash, apply to Lyme charities as mentioned above, or ask family to front the fees instead of your next birthday gifts. Lyme does not go away by itself, and may be problematic if you have a baby when you have Lyme -- I would get the Lyme cured before moving ahead with a pregnancy, but be sure to talk with your gynecologist and your Lyme doc beforehand. Lyme will not just go away by itself, and can cause problems for a pregnancy and/or a resulting baby. Lyme is still a developing field.
-- You say: "I am frustrated bc I have been feeling so ill for over 18 months."
I hear you. It took me months and month to find a doc who finally tested me for Lyme AND who also believed the positive test. The doc who ran the (positive) test told me I 'could not possibly have Lyme', but the Lyme specialist I then took the test results to (for a second look) confirmed that I did indeed have Lyme disease AND a co-infection. Getting well again is definitely worth the hassle and the cost.
-- You say: "I call BS on her explanation for being reactive on band 23 as 'you had it at one point.' "
Your doc is (imo) following (the outdated) belief that a few weeks of doxy being totally effective to kill a Lyme infection.
-- You say: "Still she wants to treat me with Doxy?"
It's the old fashioned approach, and your docs seems to be following that. Too bad. Doxy itself is not bad, from what I read, but its effect is mostly *very* early after initial infection. Other, more recent, abx may well be more effective. A Lyme doc will know.
-- You say: "I can't get to a Lyme dr unless she refers me (insurance is a *****)."
Ask the doc to refer you. If not, then hit your family and close friends and the Lyme charities mentioned above and put it on credit cards if you have to. It's worth it to get well again.
Best wishes to you -- and good for you for not giving up. The medical community is in chaos about Lyme and its co-infections, so keep looking out for yourself. Keep us posted, and let us know how we can help, okay? Take care!
-- You say, "Will not refer me to any specialists yet until I get those [other tests] back." 18 months is indeed a long time to wait. Having those test results, even if your current insurance company will not play ball, could be very helpful to your next doc, whether with your current insurance company or another one. It is possible that insurance will reimburse you at some level for Lyme testing and treatment, even if the Lyme doc you see is not 'in-network' with your insurance company.
If your insurance won't do that, then consider paying out of pocket to see a Lyme specialist outside your insurance plan. We have become accustomed to seeing only docs who are 'in-network' with our current insurance plans, but if your current docs are not up-to-speed, then go out of network at least for diagnosis. If you don't have the cash, apply to Lyme charities as mentioned above, or ask family to front the fees instead of your next birthday gifts. Lyme does not go away by itself, and may be problematic if you have a baby when you have Lyme -- I would get the Lyme cured before moving ahead with a pregnancy, but be sure to talk with your gynecologist and your Lyme doc beforehand. Lyme will not just go away by itself, and can cause problems for a pregnancy and/or a resulting baby. Lyme is still a developing field.
-- You say: "I am frustrated bc I have been feeling so ill for over 18 months."
I hear you. It took me months and month to find a doc who finally tested me for Lyme AND who also believed the positive test. The doc who ran the (positive) test told me I 'could not possibly have Lyme', but the Lyme specialist I then took the test results to (for a second look) confirmed that I did indeed have Lyme disease AND a co-infection. Getting well again is definitely worth the hassle and the cost.
-- You say: "I call BS on her explanation for being reactive on band 23 as 'you had it at one point.' "
Your doc is (imo) following (the outdated) belief that a few weeks of doxy being totally effective to kill a Lyme infection.
-- You say: "Still she wants to treat me with Doxy?"
It's the old fashioned approach, and your docs seems to be following that. Too bad. Doxy itself is not bad, from what I read, but its effect is mostly *very* early after initial infection. Other, more recent, abx may well be more effective. A Lyme doc will know.
-- You say: "I can't get to a Lyme dr unless she refers me (insurance is a *****)."
Ask the doc to refer you. If not, then hit your family and close friends and the Lyme charities mentioned above and put it on credit cards if you have to. It's worth it to get well again.
Best wishes to you -- and good for you for not giving up. The medical community is in chaos about Lyme and its co-infections, so keep looking out for yourself. Keep us posted, and let us know how we can help, okay? Take care!
You say, "Talked with my doc and she says b/c it is not 5 bands CDC requires I do not have it but have had Lyme at some point in my life."
I am not medically trained in any way, but I had both Lyme disease and another infection often carried by the same ticks as Lyme. I live in an area with many excellent medical centers and hospitals and docs of various specialties, and went through 20 of those MDs with specialties in various medical fields, none of whom even suggested the possibility of Lyme or tested me for it.
With everything already ruled out by the first 19 docs, Doc #20 finally tested me for Lyme. The test came back *positive* (!!!), but the doc very gently told me: "You cannot possible have Lyme. I have patients with Lyme, and they are all ... near death." Well, pity that doc's patients, because there was no reason but ignorance for the doc's comment. Years before I got Lyme, an old friend of mine back East had had Lyme, so I was aware of it but really didn't know much ... but I did know for certain that being 'near death' is not the automatic result of having Lyme. This just goes to show how ignorant too many MDs are when it comes to Lyme.
I took that positive test result and got myself to a Lyme specialist well known in the field. He confirmed the Lyme diagnosis, and also diagnosed a 'bonus' infection called babesiosis that the tick had brought me. (Maybe half of everyone who has Lyme disease also has one or more other infections carried by the 'Lyme' ticks. The babesiosis I had is just one of the half dozen or so possibilities. )
Because the symptoms of Lyme and these co-infections intermingle, it is difficult for the patient to realize that there may be more than one thing going on, and MDs who are not wise to the ways of Lyme will not think to inquire.
Lyme is a fairly recent arrival in the bacterial world, as things go, and the docs who first figured it out a few decades ago didn't quite get it right ... these docs were convinced that Lyme is rare, hard to get, and easy to cure with a few weeks of a basic antibiotic (doxycycline), and if the patient is still ailing after that treatment, then these not-up-to-date docs still insist that *The Infection Has Been Cured* and any remaining symptoms don't mean anything, it's just 'post-Lyme syndrome' -- meaning your body is still reacting against Lyme even though the infection is gone.
Uhhh, wrong: More recent research and approaches indicate that Lyme bacteria (which are similar to the bacteria that cause syphilis, a serious infection often transmitted sexually) have the ability to hide in slimy areas they create in the body, called 'biofilms' ... the immune system can't see through the biofilms, and the antibiotics often used against Lyme cannot effectively penetrate the biofilms either. Other, newer meds are more useful, but not all docs have gotten the message.
All of what is written about treatment in the paragraph above is often ignored by so-called mainstream MDs, who are often not up to date with newer research about Lyme and how to treat it. One aspect of this gap in the medical community is a refusal to consider more recent research, and that seems to be the path your current doc is following.
After my journey through 20-odd MDs and the accidental and ignored diagnosis I got from Doc #20, I took the test results and found an ILADS doc. A good doc does not *have* to be a member of ILADS, but it's a good sign, and that's where I would likely start if I were in your situation. You do not need to tell your current doc you are getting a second opinion from another doc, and you may wish to keep it quiet until you see that new doc and get some test results. We the patients are stuck in the middle of LymeWorld, but it's worth the effort to find up-to-date thinking from a good doc.
A number of the ILADS-member MDs may not accept your current insurance (just call the doc's office and ask if they do accept yours), and if they don't accept your insurance and you aren't able to front the money, then I would look for financial assistance from some Lyme-related charities: LymeLight Foundation and Lyme Disease Association [dot] org are two that have read about. Also just search online for -- Lyme charity -- and see what you get.
I have also seen references to American Lyme Disease Foundation (ALDF [dot] com), and also other possibilities if you search the term:
-- lyme charity --
There is much confusion in the medical world about Lyme disease, and any donation is helpful to a Lyme-focused organization.
=================================
A few more comments on your post above:
-- You say, "I asked if it goes away on it's own and she says yes."
I'm not medically trained, but my gut reaction (after having lived through Lyme and now well again after treatment, and having read a good bit about Lyme), I would think your doc is using 'old-think' about how to deal with Lyme. I'd find a new doc.
-- You say, "Ordered a battery of other tests. (Celiac Disease panel, Cyclic citrul peptide antibody, and Phosphorus)."
It can't hurt to get these other things ruled out, but given what I learned from Lyme, I would pursue Lyme first. It is a rapidly spreading bacterial infection that many MDs simply disregard. ALWAYS get and keep copies of all test results in a folder at home. At some point, you may change docs for a variety of reasons, and having that historical data can be of significant help to the doc in diagnosing and treating you. Lyme is a new field of medicine, so be sure to get and keep copies of all tests etc. for your own files.
[End of first half of response to you: see remaining comments in next comment box below]
I am not medically trained in any way, but I had both Lyme disease and another infection often carried by the same ticks as Lyme. I live in an area with many excellent medical centers and hospitals and docs of various specialties, and went through 20 of those MDs with specialties in various medical fields, none of whom even suggested the possibility of Lyme or tested me for it.
With everything already ruled out by the first 19 docs, Doc #20 finally tested me for Lyme. The test came back *positive* (!!!), but the doc very gently told me: "You cannot possible have Lyme. I have patients with Lyme, and they are all ... near death." Well, pity that doc's patients, because there was no reason but ignorance for the doc's comment. Years before I got Lyme, an old friend of mine back East had had Lyme, so I was aware of it but really didn't know much ... but I did know for certain that being 'near death' is not the automatic result of having Lyme. This just goes to show how ignorant too many MDs are when it comes to Lyme.
I took that positive test result and got myself to a Lyme specialist well known in the field. He confirmed the Lyme diagnosis, and also diagnosed a 'bonus' infection called babesiosis that the tick had brought me. (Maybe half of everyone who has Lyme disease also has one or more other infections carried by the 'Lyme' ticks. The babesiosis I had is just one of the half dozen or so possibilities. )
Because the symptoms of Lyme and these co-infections intermingle, it is difficult for the patient to realize that there may be more than one thing going on, and MDs who are not wise to the ways of Lyme will not think to inquire.
Lyme is a fairly recent arrival in the bacterial world, as things go, and the docs who first figured it out a few decades ago didn't quite get it right ... these docs were convinced that Lyme is rare, hard to get, and easy to cure with a few weeks of a basic antibiotic (doxycycline), and if the patient is still ailing after that treatment, then these not-up-to-date docs still insist that *The Infection Has Been Cured* and any remaining symptoms don't mean anything, it's just 'post-Lyme syndrome' -- meaning your body is still reacting against Lyme even though the infection is gone.
Uhhh, wrong: More recent research and approaches indicate that Lyme bacteria (which are similar to the bacteria that cause syphilis, a serious infection often transmitted sexually) have the ability to hide in slimy areas they create in the body, called 'biofilms' ... the immune system can't see through the biofilms, and the antibiotics often used against Lyme cannot effectively penetrate the biofilms either. Other, newer meds are more useful, but not all docs have gotten the message.
All of what is written about treatment in the paragraph above is often ignored by so-called mainstream MDs, who are often not up to date with newer research about Lyme and how to treat it. One aspect of this gap in the medical community is a refusal to consider more recent research, and that seems to be the path your current doc is following.
After my journey through 20-odd MDs and the accidental and ignored diagnosis I got from Doc #20, I took the test results and found an ILADS doc. A good doc does not *have* to be a member of ILADS, but it's a good sign, and that's where I would likely start if I were in your situation. You do not need to tell your current doc you are getting a second opinion from another doc, and you may wish to keep it quiet until you see that new doc and get some test results. We the patients are stuck in the middle of LymeWorld, but it's worth the effort to find up-to-date thinking from a good doc.
A number of the ILADS-member MDs may not accept your current insurance (just call the doc's office and ask if they do accept yours), and if they don't accept your insurance and you aren't able to front the money, then I would look for financial assistance from some Lyme-related charities: LymeLight Foundation and Lyme Disease Association [dot] org are two that have read about. Also just search online for -- Lyme charity -- and see what you get.
I have also seen references to American Lyme Disease Foundation (ALDF [dot] com), and also other possibilities if you search the term:
-- lyme charity --
There is much confusion in the medical world about Lyme disease, and any donation is helpful to a Lyme-focused organization.
=================================
A few more comments on your post above:
-- You say, "I asked if it goes away on it's own and she says yes."
I'm not medically trained, but my gut reaction (after having lived through Lyme and now well again after treatment, and having read a good bit about Lyme), I would think your doc is using 'old-think' about how to deal with Lyme. I'd find a new doc.
-- You say, "Ordered a battery of other tests. (Celiac Disease panel, Cyclic citrul peptide antibody, and Phosphorus)."
It can't hurt to get these other things ruled out, but given what I learned from Lyme, I would pursue Lyme first. It is a rapidly spreading bacterial infection that many MDs simply disregard. ALWAYS get and keep copies of all test results in a folder at home. At some point, you may change docs for a variety of reasons, and having that historical data can be of significant help to the doc in diagnosing and treating you. Lyme is a new field of medicine, so be sure to get and keep copies of all tests etc. for your own files.
[End of first half of response to you: see remaining comments in next comment box below]
I am in the normal range for PTH. Talked with my doc and she says b/c it is not 5 bands CDC requires I do not have it but have had Lyme at some point in my life. I asked if it goes away on it's own and she says yes. Ordered a battery of other tests. (Celiac Disease panel, Cyclic citrul peptide antibody, and Phosphorus). Will not refer me to any specialists yet until I get those back. I am frustrated bc I have been feeling so ill for over 18 months. I call BS on her explanation for being reactive on band 23 as "you had it at one point." Still she wants to treat me with Doxy? I can't get to a Lyme dr unless she refers me (insurance is a *****). Thoughts? TYIA
Good luck!
Low Vitamin D can also be related to the high calcium because the working parathyroid glands are trying to keep calcium out of the blood and vitamin D assists in its absorption. Unfortunately there are many endocrinologists who are experts on thyroid issues but do not have a clue about the parathyroid glands, which except for the shared name and close proximity, have nothing to do with the thyroid! Hope you can find a knowledgeable one! As you probably read, adult calcium levels really should not be above 9.5. Hyperparathyroidism and Lyme share quite a few symptoms; if it were me I would want an LLMD to take a second look at those test results, especially band 23 - you could have a long-term infection that's mostly in hiding and it'll take a clinical diagnosis to figure out what needs to be treated.
Again, good luck!
Low Vitamin D can also be related to the high calcium because the working parathyroid glands are trying to keep calcium out of the blood and vitamin D assists in its absorption. Unfortunately there are many endocrinologists who are experts on thyroid issues but do not have a clue about the parathyroid glands, which except for the shared name and close proximity, have nothing to do with the thyroid! Hope you can find a knowledgeable one! As you probably read, adult calcium levels really should not be above 9.5. Hyperparathyroidism and Lyme share quite a few symptoms; if it were me I would want an LLMD to take a second look at those test results, especially band 23 - you could have a long-term infection that's mostly in hiding and it'll take a clinical diagnosis to figure out what needs to be treated.
Again, good luck!
Welcome to MedHelp Lyme --
These are good questions you ask --
You say, "I tested reactive for bands 41 KD (IGG) BAND, 58 KD (IGG) BAND, and 23 KD (IGG) BAND. Howeven I am negative on LYME DISEASE AB IGM, WB. (western blot test)
To my understanding, the 'bands' refer to specific sections of the Lyme bacteria, and bands 41, 58 and 23 mean as follows:
41 -- this could be Lyme, but could be another infection instead
58 -- unknown exactly what it is, but may be a 'heat-shock' protein of the Lyme bacteria (I think that means is a variation on the regular Lyme bacteria))
23 -- this is an outer surface protein (OspC) on the outside of some of the Lyme bacteria, and ONLY Lyme bacteria have this protein
IgG is short for Immunoglobulin G, and its presence mean previous exposure to Lyme bacteria or an older Lyme infection.
You say also, "I am negative on LYME DISEASE AB IGM, WB. (western blot test)" -- this would indicate that the test is not currently picking up antibodies (AB) your immune system would make against Lyme, but you could have previously had a Lyme infection, as the IgG marker indicates above.
If your current doc is not picking up on the possibility of Lyme (whether a current infection or an older one that could still be hanging around), then I would seriously consider a visit with a different (Lyme specialist) doc just to be sure that any lingering infection and Lyme bacteria have been killed off and that there is nothing else going on.
Ticks run wild in the late summer and fall, and you could have been bitten a few months ago ... dunno. And Georgia's piney woods have plenty of ticks! I would follow up with a doc who really understands Lyme, just as a second check on the diagnosis. Lyme is tricky, and not all docs are totally tuned in, but treatment (esp. early treatment with certain antibiotics) is quite doable.
Try not to worry, and for peace of mind, I'd get a second opinion from an ILADS-member MD. Best wishes, and let us know how you do, okay?
These are good questions you ask --
You say, "I tested reactive for bands 41 KD (IGG) BAND, 58 KD (IGG) BAND, and 23 KD (IGG) BAND. Howeven I am negative on LYME DISEASE AB IGM, WB. (western blot test)
To my understanding, the 'bands' refer to specific sections of the Lyme bacteria, and bands 41, 58 and 23 mean as follows:
41 -- this could be Lyme, but could be another infection instead
58 -- unknown exactly what it is, but may be a 'heat-shock' protein of the Lyme bacteria (I think that means is a variation on the regular Lyme bacteria))
23 -- this is an outer surface protein (OspC) on the outside of some of the Lyme bacteria, and ONLY Lyme bacteria have this protein
IgG is short for Immunoglobulin G, and its presence mean previous exposure to Lyme bacteria or an older Lyme infection.
You say also, "I am negative on LYME DISEASE AB IGM, WB. (western blot test)" -- this would indicate that the test is not currently picking up antibodies (AB) your immune system would make against Lyme, but you could have previously had a Lyme infection, as the IgG marker indicates above.
If your current doc is not picking up on the possibility of Lyme (whether a current infection or an older one that could still be hanging around), then I would seriously consider a visit with a different (Lyme specialist) doc just to be sure that any lingering infection and Lyme bacteria have been killed off and that there is nothing else going on.
Ticks run wild in the late summer and fall, and you could have been bitten a few months ago ... dunno. And Georgia's piney woods have plenty of ticks! I would follow up with a doc who really understands Lyme, just as a second check on the diagnosis. Lyme is tricky, and not all docs are totally tuned in, but treatment (esp. early treatment with certain antibiotics) is quite doable.
Try not to worry, and for peace of mind, I'd get a second opinion from an ILADS-member MD. Best wishes, and let us know how you do, okay?
1 Comments
Thank you all for your comments. I was not receiving notifications for your responses and I apologize for the delay. I go back to my family Dr this afternoon for a follow up and to go over my blood results. I am requesting to see an Endocrinologist bc I do display a ton of symptoms for Parathyroid problems. I will update you all. Thank you again.
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