Topic: UPDATE: Having a really hard time - not sure what to do
bcb1200
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Member # 25745
posted
Hi folks:
I haven't been around much the past few years. I was out living my life. I was dx'd in 2010 and did 2.5 years of heavy treatment and was at 90%+ after the first 6 months or so.
I transitioned to herbs in 2013 and was on them for more than 2 years, having not gotten any better or worse. Life was good and was returning to normal.
I see a well know LLMD in CT who is up there with some of the greats in the entire USA.
Anyway, most of my remaining symptoms were mild. Specifically mild calf muscle twitching, very mild night sweats (night dampness really), some mild URQ discomfort, and tinnitus. That was it.
We continued to treat because I would have mild flares starting new drugs...and I wanted to be in 100% remission so that I don't relapse years down the road.
I had a huge flare in Aug 2014 when starting A-Bio. Biggest in a year. Major brain herx symptoms like detached, spacey, foggy, etc. We took it as a clue.
2015 I ramped up on the a-bio and felt pretty crappy for the first half of the years. I would have afternoon spaciness, ear fullness, wooziness, etc. These went away when I stopped A-Bio.
LLMD thinks Brucella is in the mix. I had some bladder / prostate issues earlier in the year.
Went back on ABX for the first time in 2 years. Started CIPRO and then a week later, Doxy. I had a HUGE flare when starting Doxy. It was as if I was back to square one. Facial flushing, early AM awakenings, early AM sweating, feelings of doom, etc. It passed in a few weeks.
I switched to Minocyline and Rifampin in late August and felt really good September and October.
Went back to Doxy/Rifampin in November and started to have days of feeling off. Detached / woozy in the afternoon. Ear fullness again. All very old symptoms.
December, I had moments of moderate dizziness / off balance feelings which I haven't had since 2010. I started to get concerned, but otherwise felt pretty good. I thought it was a doxy side effect (even though I have taken doxy for years before and could always tolerate it well.)
Met with my LLMD on 12/21 and asked if I can take a break from meds for Christmas. He loves breaks and said sure. I've typically been able to handle breaks really well.
Stopped meds on 12/21 evening. Felt terrible 12/22 and 12/23. Facial flushing, detached, woozy. Christmas eve had a lot of ear issues, dizziness, brain herx. I got a recurrence of a new/different tinnitus in my left ear that I've only ever had while taking Lariam. Night sweats returned. I sometimes get hot/sweaty after meals, etc, and feel better if I skip meals or eat low carb / low sugar.
Called LLMD after Christmas and asked if this could be yeast. Have now been on Diflucan and Garlic for a week. Dizziness / ears fullness is better, but I still have wooziness, amped up feeling, and a lot of the early symptoms like early AM awakenings and sweating. I also have back of head (occipital) pressure and sometimes sinus pressure.
Honestly, I felt better 2 years ago than I do now. Ever since starting A-Bio and starting down that road It has been down hill for me. I am starting to freak out about what is happening. I have a high profile job. I need my brain and can't be dizzy. I am the sole breadwinner for my family.
I'm not sure if, from the big picture perspective, this is a good thing or a bad thing. Before, I felt pretty good but still had symptoms and didn't know which way to turn. But now I feel terrible, although we have definitely provoked a response of something and are getting a reaction. I have no idea if it is Babesia, Protozoa, Bartonella, or Brucella. But it seems like something like that. Given I relapsed in days coming of meds...that is typically not Lyme.
I've always been able to handle my flares pretty well, and my flares have rarely been disabling.
I'm concernd now that my flares seem to be more severe...lasting longer, and more disabling to me from a daily functioning perspective.
I'm not sure what to do. Should I go back on drugs? Or wait to see if this is just a flare that passes?
My LLMD doesn't typically push antibiotics unless it is mandatory. He prefers herbs for most people.
I think I've got a mixture of Brucella/Bart/Babs going on and would love to do Mino/Rifampin/Ivermectin/Liposomal Artemisinin.
Sorry folks. I know this is long, and I know I've posted a lot lately. It has been a dark 2 weeks.
I haven't felt this bad for this long since pre diagnosis in 2010. Granted, I'm not nearly that bad...but still I'm not great. I can't go back to where I was. I'm having feelings of dread, doom, like I'm going to have performance issues at work and then lose my job, be permanently disabled, etc.
Or...if this dies down, that I'm never going to rid myself of this disease...and as I age, it is just going to get worse as my immune system ages. Will this cut my life short? What will I be like in my 50's, 60's?
Just need some support and hugs.
I've seen a few folks who had symptoms similar to mine now appear to be well. Nefferdun and BoxerMom. Both no longer post here. I think they were worse than me...so it gives me hope.
posted
I'd get off the A-bio and doxy. Maybe try the mino again. Or get back on an herbal protocol. I'd go back to the stuff that made you feel good. Sometimes it's the meds/supps themselves that make you feel bad.
Are you taking things like milk thistle, dandelion, and others for the liver? You've been taking a lot, perhaps the feeling bad when you stopped was the body trying to do some work getting rid of the toxins.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bcb1200
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posted
Thanks Sixgoofy. you've always been there for me.
The concern here is I'm now off everything (stopped 2 weeks ago) and still am this way.
Some of these symptoms popped up after switching back to Doxy. And then everything got worse after stopping Doxy/Rifampin on 12/21.
-------------------- 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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Catgirl
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posted
Sorry to hear this. Pressure in the back of the head for me is proto. Hot and sweaty after meals, and skipping meals and feeling better sounds like proto too. I've gotten those symptoms so many times. But I have babs too. Do you think you may have been bitten again? I guess it doesn't matter.
Proto has more symptoms though, so maybe it's babs. Artemisinin will hit babs and proto, iver will hit proto and parasites, and maybe babs too. I think the gloom and doom feelings you're having are from bart. Since you are relapsing after going off the meds, that would suggest bart is in the mix.
It takes time to discover stuff but it sounds like you're on the right path. You might want to incorporate some ondamed too. It has helped me feel better with lyme and company. Hang in there, you'll make it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Brussels
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Member # 13480
posted
Now you reached the turning point of your treatment, in my opinion. It is where protocols end, and art + imagination + intuition start playing important role.
I'm not kidding. Protocols and single approaches will help until about 80%. After that, comes art, it isn't anymore only medicine!!
That is exactly why I kept doing energy tests. When I had no more clue, energy tests helped guiding my way.
It is very easy to find out which are the active infections with ART or a good energetic test (with an experienced practitioner). A baby easy thing to do, really, my daughter could do that since age 3.
She's now 12 and is a master-energy tester!!!
Once you know which pathogen, you can still energy test for the exact combination of medicines or supplements that heal that infection, and keep changing the herbs and combinations until the symptoms disappear.
I'm running a thread on the Tesla Violet Ray. It does help the cells with energy. Anything with PEMF will also probably help.
The treatment to AVOID relapses, prevent lyme, is very different when you have active lyme:
.... you go from killing-surviving-symptom relief approach
....to a life-supporting-enhancing approach.
A lot has to change and in my opinion, only alternative treatments will prevent a relapse (as I do not believe abx or killers for life will prevent infections to come back, not even if herbal).
Diet, supplements, supporting herbs, potent antioxidants, and all the other alternative supporting electric, magnetic, earthing 'therapies', electrosmog avoidance, hormone balancing, heavy metal detox, treating teeth infections etc can keep you off lyme and trouble for long.
What helped my lyme remain dormant was photon therapy. It helped immensely, really.
It's been a long time (years!) I do not do it anymore (not for lyme), but I still am doing those plasma magnetic treatments (with the Tesla wand), and would certainly continue doing something to avoid falling so ill again, as I did with lyme.
I do think you are on the right track. It's just a matter of finding your way to let your immune system deal with lyme and infections. It's the hardest part (because it is more art than medicine, as I said), but it pays back when you do not feel haunted by lyme anymore!
Posts: 6199 | From Brussels | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might also consider Rife with key nutritional support:
RIFE Machine - Reference LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Well, I am able confirm this is a relapse and not a flare.
The IC-like / Bladder symptoms I was having in the March-June time frame are back.
To me this means it is definitely something intracellular, or else the Fry Bug.
I'm meeting with my LLMD later this week and will push to get back on abx.
In August I went on Cipro/Doxy, then Mino/Rifampin and got to feeling pretty darn good. Bladder / IC / Prostate symptoms gone. Night sweats gone for the first time in years.
Now it has all come roaring back within days of stopping. This helps confirm Bart/Brucella/Protozoa.
I hope if I restart Mino/Rifampin I will have the same results! (I' like to avoid the CIPRO.) Will also push to add Ivermectin and Artemisinin as Dr P states it helps treat Brucellosis.
-------------------- 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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posted
So, it's not a reaction to the meds then, but it could be the toxins they caused still being in the system and making you feel bad. Try givng yourself some detox support and see if it helps. Maybe you'll have some relief while you're waiting to see your LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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dbpei
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Member # 33574
posted
Your plan sounds good BCB. You were feeling well before while on the mino and rifampin. Those two meds alone will help fight bart and brucella and probably lots more. If you add the Ivermectin and Art, you are covering parasites, babesia and Protozoa.
Does Dr. M have you on Pekana Detox trio? He added that to my regimen recently and I think it has helped. You can take it any time near your meds also.
I like your plan so much, I might ask for it myself next visit! Good luck and please keep us posted.
Posts: 2386 | From New England | Registered: Aug 2011
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MannaMe
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posted
What is the Pekana Detox Trio? And is it helpful for those who have trouble detoxing?
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dbpei
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Member # 33574
posted
It is a homeopathic trio of detox help for liver, kidneys and lymph glands. Pekana is the brand name.
Posts: 2386 | From New England | Registered: Aug 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi bcb,
sorry you are having such a rough time. Answered your pm in ref to antiparasitics. Since parasites reside in the G. I. track, and you get symptomatic after meals, seems like that could be a problem for you. I see Ivermectin and art is something you are considering and def think it's a good idea.
It's possible you have the Filarial Worm co-infection since Dr. Eva Sapi a researcher from your area is finding this co-infection in over 40% of the ticks she dissected.
I would bring this poss up to your docs attention. Ivermectin and doxy seems to be a good combo for this infection and I believe is being used by mainstream docs. Google it for more info. Hope you find an answer and feel better.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all.
I wasn't doing any detox so I started the Pekana drainage kit 2 days ago. (I was on this a few months back and had some.)
I'm not sure if what I have is brucella, bart, or protozoa, or perhaps all 3. But whatever it is, it is angry.
I'm feeling better today...not great, but better.
I took some Freeze Dried Garlic yesterday after B-fast and it really amped up my anxiety.
Will keep you posted.
-------------------- 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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry you've had such a rough time. Darn it all!
It is good for you to lay it all out there as you did. You get a clearer picture- sometimes- but others can see a bigger picture sometimes we (ourselves) can't see.
What hit me in the face when I read your report was babesiosis.
I also see leaky gut (sweats after eating, etc.).
Here is a list of TBD's that have symptoms and other info. Hope it will be of help to you.
But, mostly I hope you are feeling much better soon!!!
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
UPDATE:
Hi folks:
So I'm back on meds. Rifampin and Minocycline. we will look to add Ivermectin in a month and also Liposomal Artemisinin.
LLMD thinks this is something likely intracellular, (Bart, Brucellosis, CPN, other) given the speed of relapse. He also thinks something protozoan is in the mix, either Babs, PR, other.
Feeling a bit better, but ears are still bothersome.
I've done a lot of reading through history over the past few days. Reviewing old symptom logs (that I really hadn't been keeping the past 2 years since I felt pretty good), reading old posts on LN, etc.
Reviewing all of this, I have noticed a bit of a pattern: 1) I have only had 3 other "fast relapses" like this in the past. The first two were back in 2010, first when I stopped Levaquin due to tendon issues. And then a month or so later when I stopped Rifampin. When I stopped Rifampin, I had many of the same symptoms I am experiencing now (just not quite as severe.) The final time was in 2012 when I stopped Doxy, Biaxin, and HH for a few days. Was sick within 36 hours. ALl of the above happened while going after Intracellular bugs.
2)When I've had the "full ears" problem in the past, it usually accompanies a flare. And has also happened a lot when targeting intracellular bugs. Interesting....
So I've been down this road before...just not in a long time.
Part of me wishes we never went after intracellular bugs with A-Bio back in late 2014. Ever since then I've been feeling worse. But I also know that if I've got the bugs I need to get it dealt with.
Will keep you posted. Thanks for the support as usual.
-------------------- 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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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
don't regret. If you didn't get them now, you would have to deal with them later, anyway.
I know it's a relapse, but being so long in remission means you are in MUCH better shape than MANY other people that rarely reach remission, or when they do, it lasts only days or weeks.
I'm sure with the proper treatment, you'll get back again in track soon. Just treat infections thoroughly, until they go again dormant. They usually get very agressive when you chase them from their hiding places, I feel.
They have no other choice than being aggressive, but it means they are fearful and losing (at least, that is how I interpreted many times). If you keep giving the right medication, they withstand less chance than very long term chronic infections, in my opinion.
That is why I used energy testing, until i got them all, until the last active infection. When a relapse just starts and you attack it fast, it is MUCH EASIER then when you have the infection chronic for years or decades!!!
Crossing fingers!!!!
Posts: 6199 | From Brussels | Registered: Oct 2007
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bcb1200
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posted
Hi folks:
Just wanted to give another update. Ears are much better today as is bladder / IC symptoms.
I think this proves it is bart or some intracellular bug like Brucella or CPN.
BTW...here is a post I found that I made back in Oct of 2010 after the first time I stopped Rifampin. I'm complaining of many of the same symptoms.
-------------------- 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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dbpei
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posted
That is great bcb! Hope this good stuff continues for you. Your previous thread sounds so similar to your recent posts.
This is making me feel it is time for me to go back on rifampin or rifabutin. I was miserable last time I took rifampin but tolerated rifabutin okay. I will discuss this with LLMD next visit. Thanks for the update.
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Judie
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I hope you're not on cipro anymore. One dose can cause a cascade of lyme-like symptoms that can creep in months or years after taking it.
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dbpei
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Member # 33574
posted
In searching for information on brucellosis vs. babesiosis, I found an old thread that I started a while back with some good information posted by TNT on 10/14/15 that lists the symptoms of babesiosis and brucellosis, showing what they have in common and what is different about both. Maybe it will help some here to differentiate.
bcb1200
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posted
quote:Originally posted by Judie: I hope you're not on cipro anymore. One dose can cause a cascade of lyme-like symptoms that can creep in months or years after taking it.
I am cautious about fluoroquinolones, but they can also be useful and have helped many. I am not on cipro anymore.
-------------------- 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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CherylSue
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Avoid the Cipro! That is in the family of fluroquinolones that includes levaquin and others. These medications made me horribly ill and made the lyme disease 10x worse.
I would also stay away from the A-Bio since that makes you flare horribly. Bad herxes can make you even sicker overall.
In my experience...
Also read the #2 thread about FDA warning flouroquinolones on this site.
Posts: 1954 | From Illinois | Registered: Aug 2007
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bcb1200
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posted
So, I've been on back on meds about a week. Rifampin and minocycline.
Overall, things are better. My anxiety is now gone. I'm sleeping. Dizziness / wooziness is gone, and bladder irritability is much better / almost gone (knock on wood.) Brain fog is mostly gone as is the awful brain herx feeling.
But I'm not to where I was this past Sept/Oct or hell, even mid 2014. My tinnitus is worse since this flare. My ears still have moments of feeling very full. Then they feel normal. I've got pressure on the top of my head. I've got increased floaters, and discomfort at the base of my skull / back of my head. And I'm still having some hip/pelvic discomfort. These are all symptoms I've had before..just not in a LONG time.
I'm just down. Down, down, down. So sick and tired of this disease. I realize some of you would kill to be where I'm at. I'm pretty functional. I was at 90-95% and off abx for 2.5 years. Life returned to normal.
But there are things still lurking....and I've angered something. I so much want to get back to where I was. I'm worried I'm not going to be able to do it.
I'm tired of spending money on this disease. It is so bleeping expensive. I'm fortunately in that I have a good job, but I still hate spending the money...and I'm fearful of losing my job if I continue to backslide. What happens if I can't perform at work, etc?
But then I have to tell myself that I was way worse off in the very beginning. And that I got myself to 95% in 1.5 years of treatment. Take this as a clue to what is left. Find trends. Fight. Fight. Fight.
I'm really hoping my latest tests come back positive for something. Bart. Protozoa. Anything. The last time I felt like this is when I started A-Bio, and then 2 years earlier when I started Hulda Clark's Parasite Cleanse. But those flares passed in a week or so.
I'm going to get some ART testing. Perhaps a Dr. K trained ART tester can shed some light on what is causing my problems. If it is Bart, maybe I'll change to Dr. M (Bart Doc) in Wash DC. I know he treats complex bart with Biaxin and high dose Rifampin, along with Ivermectin for protozoa.
I just want to be Done.
Sorry for venting. I'm just down today. I hate feeling sick. Thanks for listening.
-------------------- 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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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Just go for ART. Don't be so pessimist. If you got to 95%, you can come back there, I'm almost sure. Just go for ART, find out the bugs, treat them.
If you solve your lyme problem, still continue with ART, find out OTHER problems (psycho, allergies, hormones, heavy metals, teeth, parasites, electrosmog) treat them and then you just need some supportive therapies not to fall ill again.
you can do these supportive therapies at home by yourself after main problems are solved through ART (pemf, infrared, orgon, frequency therapies, diet, tapping, taichi meditation, whatever)
I was in your shoes, going to remission, then falling ill again. Now I get often bitten by ticks, I do not fall ill with lyme anymore, but I still treat other health issues.
It's not your fault: think that electrosmog damages at least 250 proteins (meaning many essential enzymes)
+ you are breathing chemtrail toxins and microbes
+ you guys in the US are getting Fukushima radiation in the air / ocean
+ our ticks and rodents (and mosquitoes) are totally contaminated with bacteria, fungi, viruses, and other nasty stuff
+ we eat / drink / breathe pesticides, fungicides and now, herbicides that really, are deadly toxins
+ our clothes, cosmetics, soaps load us with many other toxins.
I mean, don't blame yourself or your body for falling sick. EVEN if you had done your best to prevent that, it is a very HARD task for the BEST practitioner of the planet.
Just keep treating, and after finishing with lyme, continue treating other things as best as you can, to avoid relapses.
I took a break for 5 years (fed up with treatments), then fell ill again to cavitations (root and bone infections). Now I'm back again to life, and I don't intend to stop paying attention to my health, as without health, there is no life, as we all know.
Crossing my fingers you find a good ART practitioner, and that you treat thoroughly enough and get back to your 95 -100% some time soon!
Posts: 6199 | From Brussels | Registered: Oct 2007
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dbpei
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posted
I think the thing that sucks the most about this illness is not knowing whether what we are doing is helping or hurting. When treatment is working, it often makes us sicker. How are we to know that is the right treatment? It is a nightmare nobody should have to live, but we all do.
It sounds like you are on the right track, BCB. The Rifampin and minocycline are probably killing some of the bad bugs that have found a way to linger. I think the tinnitus may get better after your treatment has started to win the fight and also, probably when you stop the ABX. There is probably a ton of inflammation in your auditory canals and vestibular nerves with the bugs being killed off there right now.
Are you still taking ABIO? Or any other of the herbs? They can also make my tinnitus worse. There is an LLNP who was trained by Dr. K in our area who does ART testing. But it sounds like you want to go to a very reputable LLMD who specializes in bart. So much effort and cost we put forth in an effort to get the quality of our lives back. Thanks for keeping us posted.
Posts: 2386 | From New England | Registered: Aug 2011
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bcb1200
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posted
Thanks DB. Yes, I know of the LLNP in RI who does ART testing. I'm going to see her just to get a clue as to what is in the mix. Is it Bart? Is it parasites? Babesia? Or maybe Lyme has come back during my 2.5 year break.
I agree with you. That is my biggest frustration..not knowing what to target and if it is helping/hurting.
-------------------- 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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Thanks for keeping us posted.
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