posted
Good morning, I am hoping someone can help me with my WB results. I have had Lyme symptoms for years and never paid it any mind until my 10 year old daughter tested positive back in April. Since then I have been pushing my PCP to test me and finally she did. However both my IGM and IGG came back negative per CDC. IGM showed 0 bands present while IGM showed 18, 30, 58 and 93. This would seem like a positive result to me per my knowledge with what I have learned due to my own child. However my PCP won't treat me. My daughter sees an LLMD and has a follow up visit with her in December. She doesn't even have any openings until them to see me so I was thinking of at least self treating with a 30 day round of minocycline that I have from my daughter ( an older script but not expired) It seems crazy but I don't know what else to do. Looking at my results am I silly to self treat? Would you agree it looks like Lyme? Would love any and all advice before I take the plunge. Thank you all!
I should add just to be clear** I'm not taking my child's medication away from her! It is an extra bottle from over the summer that was never used. She has her own meds she takes currently.
Posts: 2 | From Massachusetts | Registered: Oct 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up above post so all can read it:
Good morning, I am hoping someone can help me with my WB results. I have had Lyme symptoms for years and never paid it any mind until my 10 year old daughter tested positive back in April.
Since then I have been pushing my PCP to test me and finally she did. However both my IGM and IGG came back negative per CDC.
IGM showed 0 bands present while IGM showed 18, 30, 58 and 93. This would seem like a positive result to me per my knowledge with what I have learned due to my own child.
However my PCP won't treat me.
My daughter sees an LLMD and has a follow up visit with her in December. She doesn't even have any openings until them to see me so I was thinking of at least self treating with a 30 day round of minocycline that I have from my daughter ( an older script but not expired)
It seems crazy but I don't know what else to do. Looking at my results am I silly to self treat?
Would you agree it looks like Lyme? Would love any and all advice before I take the plunge. Thank you all!
I should add just to be clear** I'm not taking my child's medication away from her! It is an extra bottle from over the summer that was never used. She has her own meds she takes currently.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I also had 4 bands: 30, 41, 58, 66. All of the reading I have done on the bands would say that your results are more specific to borrelia infection than mine.
All of the CDC / ISDA studies I have read show that having 4 of 10 of the CDC bands is 100% likely to represent Borrelia infection. I think they set the bar at 5 bands to keep the case count numbers artificially low.
I am no expert, but almost everything I read says that a 30 day course of anit-biotic will not "cure" long standing borrelia infections.
I would seek out an LLMD (Lyme literate MD). Are you from KC?
I am from KC and am working with an LLMD within 2 hours of KC.
Posts: 61 | From Lees Summit, MO | Registered: Jun 2017
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posted
I am from MA. Currently my daughter sees an LLMD in Rhode Island so I will start seeing her as well but cannot get an appointment until December. My daughter has been on meds since April and is still showing positive for Lyme and Myco so I know I will need more than 30..I just wanted to get a start. Thank you for your response.
Posts: 2 | From Massachusetts | Registered: Oct 2017
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Btw I found the study I saw. Check out the charts on the third to last and second to last page.
4 or more bands = 100% specificity in that study chart. The other chart shows the number of healthy controls and how many bands they had light up.
48 healthy controls had 0 bands light up 25 healthy controls had one band light up 14 healthy controls had 2 bands light up 2 healthy controls had three bands light up 1 healthy controls had 4 bands light up
interesting hmm
I think this study was even put out by the CDC friends who I'm sure hand picked the "healthy controls"
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Based on the quote from Burrascano below, you are positive for lyme disease:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic." (p. 7)
You are positive on band 18 which is specific for lyme and also band 93 which is specific for lyme. So, you are positive on 2 lyme-specific bands. The only way you can be positive on these is that your immune system is fighting lyme disease.
Regarding taking some mino now, all the lyme docs I know tell patients NOT to start taking antibiotics prior to their first appointment UNLESS they have enough antibiotics to last until their appointment.
There is no point in taking antibiotics, then having a break from antibiotics. When you have a break in treatment, the lyme just starts multiplying again, so nothing is to be gained by taking just 30 days of mino. now. Also, you have been sick with lyme for so long that I don't see the need to start now.
If you are totally miserable, and you want to do this experiment, it likely won't hurt you. Just be sure to first check out the contraindications for mino and the possible side effects.
Just know that mino is bacteriostatic (just keeps the lyme from multiplying, but does not kill it) at low doses. You likely would have what is considered a low dose available to you. So, don't expect much to happen. See this Burrascano quote:
"ANTIBIOTICS There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate." (p. 14)
Notice that Burrascano doesn't even list mino as a drug used to treat lyme. See p. 18 where he lists the meds for lyme and the appropriate dosages for each.
It sounds like your appointment is in 6 to 8 weeks. That is NOTHING in the lyme world. You are fortunate.
Also, to see another doc's take on your lyme test results, read this post on the Western Blot:
"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.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
This is true regardless of whether it is IgG or IgM.. "
And, finally, regarding your primary care doctor's refusal to treat you for lyme--that is to be expected. You have to go to a lyme specialist to be treated for more than 30 days. So, don't expect a primary care doctor to "stick his neck out" for you and violate the Infectious Diseases Society of America lyme treatment guidelines for you.
He wouldn't know how to help you anyway!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
FYI - all inflammatory markers for me are dropping from a very simple anti-inflam remedy - I get turmeric powder in bulk from the health food store and dip empty 00-size capsules in it, take a couple a day. It takes down all muscle and joint pain for me fairly quickly.
Posts: 13116 | From San Francisco | Registered: May 2006
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Many people with chronic lyme are self medicating with ALL sorts of things for very long.
You won't be the first.
Drugs is just one type of medication people take. Most of us are doing a lot on our own, even though we visit medical practitioners.
If there were other ways to treat this, we wouldn't be doing that, you can be sure!
Don't feel guilty. The situation is so bad, that sometimes self treating is the ONLY way out for some of us. As you may realize on your own...
You gotta read all the info about the drug before, and do it with care.
I'm not a doctor, but when we read the statistics of deaths by medical errors, you'll probably won't be doing as bad as them (because you'll be extra careful and study before you ingest anything,and it is your life in stake).
Be sure to get binders for herxes (to clean neuro toxins that can be very harmful on their own).
I would also follow other people's advice on more natural treatments, correcting your diet (gluten free, organic, fresh food, non processed...),
... getting supplements that are easily bought and not dangerous (such as magnesium, vit D3, milk thistle, etc),
... because anyway, both you and your daughter will need them (with or without drugs, many people take these supplements to help the immune system).
Posts: 6199 | From Brussels | Registered: Oct 2007
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