bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Okay...so I am still confused as to whether I am early or late disseminated.
I first had "noticible" sympoms in Feb 2010...but looking back it maybe started in November 2009.
I was diagnosed and started treatment in May 2010. So..that is 4-6 months of symptoms before treatment. According to Dr. B, that would be "early disseminated" and I could expect treatment to take 4-6 months "typical."
However...I had bands 31 and 34 on my IgM positive...which take 1 year to show up. So I've had lyme for at least a year without knowing. I also had an abnormal brain spect. Does that mean I am really "Late disseminated"
Just trying to get a barometer of how long this will take.
Thanks all
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Bcb: I was told by someone on here that if band 31 is positive, it means late disseminated Lyme. However, when I wrote the IGENEX, the president wrote me back and stated If 31 is confirmed by the 31 epitope test (488 or 489) it does support exposure of greater than a year. So the only way to know for sure is to do the additional testing.
posted
i would think all depends on how fast the disease progresses. just because its been a year or over doesnt mean late. it also depends on your symptoms as well.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Early is right after a bite. Dissemination can happen within hours. Early or late mostly is about just how devastated the body has become after that point. As for trying to figure out how long treatment should be, you treat a couple months past what appears to be recovery. That can be hard to determine in advance. ----------------
"After a tick bite, Bb undergoes rapid hematogenous dissemination, and for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream." -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Pardon the ignorant question, but how does the labeling of late versus early dissemination affect treatment?
My LLMD has not used these labels on me, and I do not know when I was infected. Instead, my treatment is based on my symptoms and how I react to different combinations of abx.
Are these labels necessary or beneficial to understanding how to treat?
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Dr. B gives "guidelines" on treatment.
EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment: 1) Adults: oral therapy until no active disease for 4 to 8 weeks (4-6 months typical) 2) Pregnancy: As in localized disease, but treat throughout pregnancy. 3) Children: Oral therapy with duration based upon clinical response. PARENTERAL ALTERNATIVES for more ill patients and those unresponsive to or intolerant of oral medications: 1) Adults and children: I.V. therapy until clearly improved, with a 6 week minimum. Follow with oral therapy or IM benzathine penicillin until no active disease for 6-8 weeks. I.V. may have to be resumed if oral or IM therapy fails. 2) Pregnancy: IV then oral therapy as above. LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity: 1) Adults and pregnancy: extended I.V. therapy (14 or more weeks), then oral or IM, if effective, to same endpoint. Combination therapy with at least two dissimilar antibiotics almost always needed. 2) Children: IV therapy for 6 or more weeks, then oral or IM follow up as above. Combination therapy usually needed.
I'm trying to gauge where I am / how long my treatment will take. According to this, because I had symptoms of less than a year, am I early? (meaning 4-6 months typical?)
Or am I late because I have an abnormal spect?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There really is no way to know. Your LLMD will determine the best path and really won't have any idea for a while.
It will likely take one to three years if you have excellent self-care every single day. It could take longer but, the three year mark is where many say they felt a big improvement and real progress.
Much depends on how badly you've been affected, the number of other tick-borne or stealth infections, the shape of your liver and kidneys, immune system, heart, adrenals, etc.
Hopefully, you'll be much better in a year's time, but it could take longer. There is no way to know. Sorry. Of course, you may have a much shorter path than someone who's been ill for years with no treatment but, still, there is just no way to know for sure how long anyone's treatment will take.
Just do the best you can, hope for the best and ride the waves as they come along. Just do the best you can to take very good care of yourself every day and you are then one day closer to remission. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Support measures detailed in this link can help. D-Ribose, Hawthorn, etc.: ----------------
Topic: To everyone with cardiac symptoms please read !
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In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
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