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If I really do have Lymes Disease....
If I really do have Lymes Disease, and caught it late, lets say 6 months after, could it be too late for antibiotics to work? When is it too late for anti-biotics to work, associated with Lymes disease, (Doxycycline) (I am not sure If I spelled it right.) And yesterday I had bad jaw pains (have been on and off for a few weeks) and both sides of my head have been hurting (close to the temple, on each side) I have also been very achy from knee down. Any advice on anything? Or opinions? I would be so greatful. I just started medicine recently...
I wish I knew who this dr is so the dr could treat me. I contracted Lyme disease at least 2 times diagnosed by known tick bite then EM rash and other symptoms. 1st time 3 weeks doxy seemed to trick, but after 2nd time I never felt well. Kept arguing with PCP for over year that I thought I was still infected by lyme. He refused to treat further. I kept getting sicker and started seeing other drs but my lyme blood test were negative except for a C6 Peptide that was extremely high. Finally a dr treated with IV based on past exposure and testing for other disease being negative. Felt better for awhile then started with severe headaches, left eye pain, unrelenting fatigue and muscle cramps. Drs. in my area dismissed lyme, said it was treated and I must have fibromyalgia, chronice fatique, etc. Pursued another dr. recommended by Lyme Disease foundation, test he ran at MDL labs came back CDC positive for lyme. Put me on ABX for about 1 year. I felt decent for awhile, now fatigue, headaches and eye pain are back. I feel like I have half a cold most of the time but without sinus congestion. I think it is recurrent/persistent or relapsing lyme. My family physician ran another Lyme (quest diagnostics lab) test as all my other blood work is normal. It came back CDC negative but it did have 1 positive IGM band which was the 23kd and 2 positive IGG bands being 28 and 41. It's weird some bands from my past CDC positive aren't positive anymore but and new IGG one (28) showed up. She said I don't have active Lyme so won't treat. Plans to do a sleep study for sleep apnea. I still think it is Lyme, I sleep well, and the weird thing is I always feel better when I am on oral ABX but when I go off them, after awhile I start feeling bad again. I did have EBV as a teen, now almost 50 and first contracted lyme when I was 30. I don't know what to think, but I am tired of feeling like my but is dragging and getting bad headaches with no explanation. Any suggestions?
i have no idea? lol I guess it could be? i have had it before but now it seems to be worse at times...
Sam- it's strange you should mention acid reflux, I have it much worse than ever before..is this part of lyme?
Does Lyme Disease weaken the Immune System? If I want to test for HIV (which I do want to test for) should 3 months be conclusive for me to test? or should I also test after that since I have Lymes Disease?
great so there are a lot of factors going into messing up my cycle...antibiotics,Lyme,birthcontrol and the Plan B I just took because I was scared the birthcontrol didnt work... this makes me feel a tiny bit better...thank you ladies for your help and advice...any other advice you can give me? I will probably go back and take another ELISHA and WESTERN BLOT test early July and advice or concerns till then? My legs from knee down are usually most achy going up the stairs and my neck and upper back is stiff and very bothersome...these things have not really subsided...
In answer to your initial question, many people improve with treatment. Some are even cured (remission)! It is a controversial diagnosis as there's no way to know if it's been totally eradicated. If symptoms persist, some doctors believe you are at that point dealing with a "auto-immune" response to the infection. No one knows why some will have this and others heal completely.
Regarding testing...the CDC uses the bands for surveillance of Lyme disease NOT for clinically diagnosing Lyme disease. You don't have to be "CDC positive" to have Lyme disease.
You are so sweet to answer my questions in such detail and with your opinions and advice. I appreciate this so much. I am on the antibiotics (Doxycycline) for a month... so after that I will get tested again... this is what my doctor says. I read the website and it seemed to be quite helpful but I am new to this and it is a little hard to understand.
Yes, I would think that it is a more recent infection. I will try to find where I read that. There are so many "issues" with testing that I guess none of know for sure. Some people have immune systems that are beat down from the infection and they test negative, but have had the infection for a long time. You don't exhibit a lot of symptoms and only have 1 IgG band so I would THINK this is a fairly recent infection.
You have jumped through a tiny CDC hoop to be positive, so yes I think you have it. You should be reported as a official positive case, something that didn 't happen for me because I never had a positive ELISA. I would take it seriously especially since you are in an endemic area and take a few months of antibiotics (minimum).
You have jumped through a tiny CDC hoop to be positive, so yes I think you have it. You should be reported as a official positive case, something that didn 't happen for me because I never had a positive ELISA. I would take it seriously especially since you are in an endemic area and take a few months of antibiotics (minimum).
when you mean 23 is one of the fist to show up do you mean its possible that this is recent? what do you mean by that?
Thank you so much...so considering my results that I had put up there you pretty much think I really do have this? 41 is present in both IgM and IgG and 23 is only present in in IgM but they both came back positive on the Western Blot test. it says I was tested for
bands (93,66,58,45,41,39,31,30,28,23 and 18) I will check that website also. Thank you again for being of so much help.
bands (93,66,58,45,41,39,31,30,28,23 and 18) I will check that website also. Thank you again for being of so much help.
I have read somewhere that band 23 is one of the first to show up.
You have a CDC positive IgM western blot. There are 14 bands (that represent antibodies to borrelia, the bacteria that causes lyme disease) that can be tested for. The CDC only recognizes 3 of these in the IgM and requires you to test positive for 2 of the 3 to be considered "positive". If you didn't get your blood tested at IgeneX or some other specialty lab, you probably didn't get tested for all 14 and could have additional bands. So you probably tested positive first by ELISA or IFA and then they ran the western blot for confirmation. I would take that seriously and consider that "positive" and it sounds like your doctor is following through on that.
Below is information written by my LLMD about the western blot. That garbage they write about it being an infection of a month or less is ridiculous in my opinion. It is just another way they like to get around treating people. Most people that never show a bullseye rash are NOT diagnosed with in a month. I was sick for about 7 months and still had 7 positive IgM bands and only 3 IgG. It takes a few weeks to even mount a response so they are giving people a 2 week window to test positive before they discount it?? They only acknowledge 3 of the 14 bands (IgM)and require that you have 2 of them.
All these requirements are supposed to be for CDC REPORTING purposes only and not purely for diagnosing.
Below is a further explanation of the western blot by my LLMD. His website is drcharlescrist.com if you want to read further. He has a lot of good information on there. I hope some of this helps.
"Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
23-25: Outer surface protein C (osp C).
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
(Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics.) "
You have a CDC positive IgM western blot. There are 14 bands (that represent antibodies to borrelia, the bacteria that causes lyme disease) that can be tested for. The CDC only recognizes 3 of these in the IgM and requires you to test positive for 2 of the 3 to be considered "positive". If you didn't get your blood tested at IgeneX or some other specialty lab, you probably didn't get tested for all 14 and could have additional bands. So you probably tested positive first by ELISA or IFA and then they ran the western blot for confirmation. I would take that seriously and consider that "positive" and it sounds like your doctor is following through on that.
Below is information written by my LLMD about the western blot. That garbage they write about it being an infection of a month or less is ridiculous in my opinion. It is just another way they like to get around treating people. Most people that never show a bullseye rash are NOT diagnosed with in a month. I was sick for about 7 months and still had 7 positive IgM bands and only 3 IgG. It takes a few weeks to even mount a response so they are giving people a 2 week window to test positive before they discount it?? They only acknowledge 3 of the 14 bands (IgM)and require that you have 2 of them.
All these requirements are supposed to be for CDC REPORTING purposes only and not purely for diagnosing.
Below is a further explanation of the western blot by my LLMD. His website is drcharlescrist.com if you want to read further. He has a lot of good information on there. I hope some of this helps.
"Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
23-25: Outer surface protein C (osp C).
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
(Remember, research supports that if just one antibody that is significantly associated with Borrelia burgdorferi is present on a Western blot, 97 percent of those patients with chronic symptoms or chronic diseases feel better with antibiotics.) "
does anyone have any information or knowledge on those bands? sorry I am having so much anxiety and haven't been feeling like myself for weeks...
ok so I read it again it says 41 is present in both the IgM and the IgG band and 23 is present only in the IgM band NOT the IgG band...does this make sense to anyone? can anyone help me with this? I wasn't sure if I was reading it right before, but now I am. And this was through a Western Blot test, done by North Shore LIJ Laboratories. Thank you all in advance.
I believe they use North Shore LIJ Laboratories...does any of this informantion help? can anyone help me?
What lab did your blood test? I don't know if you posted that part. It does matter which lab did the testing.
My doctor gave me the paper work and it shows bands 41 and 23 being positive in the Western Blot test. It also says IgM band Result IgG band Result I am not exactly sure how to read it but that is what I get from it and what she had told me on the top where the numbers are lined up it says 41 is present both times and that 23 is only present once? this is a little confusing and on the bottom it says (41,23 Western Blot by CDC/ASTPHLD criteria. A negative result should not be used as sole basis for exculding B. burgdorferi as the cause of illness. Because the present of even specific antibodies to B. burgdorferi does not always indicate current infection, a positive result can support but not establish clinical diagnosis of Lyme Disease. A positive IgM anti-B burgdorferi result alone is not adequate for supporting a diagnosis of Lyme in a persons with illness of greater that one month duration.) Hopefully this will help you help me. Thanks again!
Yes I believe it goes into remission then returns whatever they say, 20 years later I ahve all the symptoms you describe, I am taking natural supplements to help myslef as the Doctors dont help.not here anyway
Ask for copies of your test results. Many doctors don't believe in chronic lyme disease, like my GP.
As far as symptoms, they are different for everyone. I don't know exactly when I was infected. It can go dormant and come out again or be more constant with changing or worsening symptoms over years.
There are people that have been cured. There are also people that think it is more of a chronic condition with remissions. It is so controversial and it seems that everyone is different. Unless your doctor has treated many lyme patients, they might not be able to accurately answer your questions. A lot of times they want to tell you that you have "something else" if the month or two of antibiotic doesn't cure you.
As far as symptoms, they are different for everyone. I don't know exactly when I was infected. It can go dormant and come out again or be more constant with changing or worsening symptoms over years.
There are people that have been cured. There are also people that think it is more of a chronic condition with remissions. It is so controversial and it seems that everyone is different. Unless your doctor has treated many lyme patients, they might not be able to accurately answer your questions. A lot of times they want to tell you that you have "something else" if the month or two of antibiotic doesn't cure you.
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