hello, i just found out about this website and decided to join. i live on Long Island, moved here when I was 10 (im 25 now). at 11, i was diagnosed with Lyme disease, and all I recall is taking antibiotics for it. a few years ago, i started working outside more often, and decided to get a blood test just to make sure I didn't get Lyme again (i hadnt found any ticks on me). the doctor seemed really confused about the results, and had a colleague look at them. the colleague said, hesistantly, that it shows I do have Lyme but it's probably from when I was 11. Last summer, after finding a few ticks on me again (no rash), I got another blood test after several weeks of feeling nauseous and achy in september. again, the doctor (another one) said that all they could tell me was that I have Lyme in my system and that it might be from when I was 11. i took an antibiotic regiment anyway, but im left hopeless and baffled. How can anyone tell if you got Lyme disease AGAIN?! Since failing to get any answers in September, I have noticed that my hands tremble when I hold them up and try to keep them still. one doctor suggested I might have hypoglycemia, but im getting paranoid that it might be Lyme that I have contracted in the past few years that noone has been able to detect, and thus it has gone untreated and gone to my nervous system. One of the teachers I knew in high school recently died from Lyme... he was always very shaky and trembling...and this makes me very nervous. Any advice/suggestions/help?
Posted by tailz (Member # 10014) on :
Don't listen to your doctors. If you had Lyme when you were 11, you likely still have it if you are showing symptoms. You need to find a Lyme Literate Medical Doctor. Lyme never quite goes away completely, and coinfections like bartonella and babesia are the rule, not the exception. Has any doctor bothered to test you for those?
Posted by sixgoofykids (Member # 11141) on :
You need to get to a doctor literate in Lyme Disease. Lyme should be treated based on symptoms. If you have symptoms, it doesn't matter if it was from a recent tick or whether it was from when you were 11, either way, you need to be treated.
The relapse rate is high for Lyme and is essentially ignored by the vast majority of the medical profession who writes off our symptoms as psychosomatic and "post Lyme syndrome".
Post under seeking doctors to find a doctor who can help you.
Posted by lymednva (Member # 9098) on :
Welcome to Lymenet. i am breaking up your post so many of us will now be able to read and comprehend it.
hello, i just found out about this website and decided to join. i live on Long Island, moved here when I was 10 (im 25 now).
at 11, i was diagnosed with Lyme disease, and all I recall is taking antibiotics for it.
a few years ago, i started working outside more often, and decided to get a blood test just to make sure I didn't get Lyme again (i hadnt found any ticks on me).
the doctor seemed really confused about the results, and had a colleague look at them. the colleague said, hesistantly, that it shows I do have Lyme but it's probably from when I was 11.
Last summer, after finding a few ticks on me again (no rash), I got another blood test after several weeks of feeling nauseous and achy in september.
again, the doctor (another one) said that all they could tell me was that I have Lyme in my system and that it might be from when I was 11.
i took an antibiotic regiment anyway, but im left hopeless and baffled. How can anyone tell if you got Lyme disease AGAIN?!
Since failing to get any answers in September, I have noticed that my hands tremble when I hold them up and try to keep them still.
one doctor suggested I might have hypoglycemia, but im getting paranoid that it might be Lyme that I have contracted in the past few years that noone has been able to detect, and thus it has gone untreated and gone to my nervous system.
One of the teachers I knew in high school recently died from Lyme... he was always very shaky and trembling...and this makes me very nervous. Any advice/suggestions/help?
i agree with six. a lyme literate doctor (llmd) can tell you if you need to be treated.
if you are showing symptoms, and it sounds like you are showing positive on a test, or they wouldn't be so baffled, then you need to get the right kind of treatment.
the average doctor is clueless about what this entails.
keep reading here, and do go to the seeking doctors forum to find a llmd who can treat you.
Posted by adamm (Member # 11910) on :
If you have symptoms, you probably have Lyme. People have
been known to relapse, and you are living in an endemic
area, so there's a fair chance you were re-exposed.
Posted by Lymetoo (Member # 743) on :
Your dr probably read the test wrong. The regular drs really don't GET Lyme.
If the IgM portion of the test is positive, then you have chronic Lyme. He is probably reading it thinking this is a "regular" infection and it shows a PAST infection.... when it DOESN'T.
Find a Lyme Literate MD ASAP!
From Dr C's Western Blot Explanation:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
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.
Response to antibiotics is the same if either is positive, or both."
Posted by Lymetoo (Member # 743) on :
Ask for a copy of the test and post the results here.
Posted by nicedream815 (Member # 15026) on :
thank you everyone. i will get the results and post them. do you think the shaky hands could be from the Lyme?
Posted by northstar (Member # 7911) on :
lyme and / or coinfections are a possibility.
Either relapse or new bite....flu?achey? hand trembling? These are on the list of symptoms.
If it were me, I would post on seeking a dr to find a llmd. This is a clinical diagnosis, and one not well versed could err.
Also, I would get copies of these tests. These are your records, you paid for them.
The hand trembling is more indicative of nervous system involvement.
Northstar
Posted by nicedream815 (Member # 15026) on :
ok, here are my results (from January)! until I find a lyme-literate doctor, any advice would be very welcome!
Western Blot IgM 41KDa - negative 39KDa - negative 23KDa - negative
Posted by CD57 (Member # 11749) on :
Your test excludes bands 31 and 34kda so this is not an Igenex test, which you may want to get. But my goodness, you have a lot of IGG positive bands, including 39 and 41, which is significant. Can you take these to a Lyme literate medical doctor ASAP?
Posted by roro (Member # 13383) on :
If any of the bands are positive, or equivocal, then you have lyme. The neg IGM and pos IGG means you have had it for a while.
Please go to an LLMD and get treated properly. Your dr will try to tell you to go to a infectious disease, but they only give 30 days max antibiotics and that wont help for an older infection.
get your dr to give you a prescription for doxy to take until you can get to the LLMD in case you have to wait a few weeks
Posted by bestblondemom (Member # 14103) on :
My understanding is that once you have Lyme that you will always test positive for it. My son got it in 3rd grade. He was treated right away and never showed any system. But I was told that he will always so positive. I wouldn't go back to 11.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo: Your dr probably read the test wrong. The regular drs really don't GET Lyme.
If the IgM portion of the test is positive, then you have chronic Lyme. He is probably reading it thinking this is a "regular" infection and it shows a PAST infection.... when it DOESN'T.
Find a Lyme Literate MD ASAP!
From Dr C's Western Blot Explanation:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
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.
Response to antibiotics is the same if either is positive, or both."
I repeat.
++++++++++++++++++++
From Dr C's explanation:
18: An outer surface protein.
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
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.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience [Dr C], 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.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
===========
You have a large number of positives and a high number of very Lyme specific bands.
Posted by nicedream815 (Member # 15026) on :
im sorry, im confused here. the amount of positive IgG's seems to mean something bad, but IgM being negative is a good thing. so, do you think I have chronic Lyme? my doctors don't even seem to know the difference. and I dont even know if this is from last year, or from 14 years ago when I had Lyme as a child. I don't really have any horrible symptoms, my joints arent stiff. The only thing is slight nausea sometimes, and shaky hands (which could be anything from hypoglycemia to stress). Wouldn't I have more symptoms if I have chronic Lyme? Anyway, I have no idea how to find a LLMD, posting in the "seeking doctor" section didn't really help. Any suggestions. I live on Long Island. Thank you all for your advice!
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i am breaking up your post so many of us will now be able to read and comprehend it.