posted
Well triple YAY. I finally got my culture results.. I had the most in depth one.. And it was a big NEGATIVE.. Super excited. This is a pretty darn accurate test so I'm content to know.. No more Lyme in me.
Posts: 267 | From South | Registered: Oct 2011
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
What test?
Posts: 1276 | From maryland | Registered: Jan 2009
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-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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posted
Hmmmm. No lymetoo. If it grows the spirocetes ya have it if not ya don't. Confirmed by lab and LLMD. My other tests were not adding up. What ever I had is gone. I highly recommend this test to figure things out. 695.00 bucks advanced labs. Your doc can order with the exception of NY state at this time.
Posts: 267 | From South | Registered: Oct 2011
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posted
Lymetoo is correct. If it's positive it is for sure a positive, if it is negtive it does not mean you don't have Lyme, it means there wasn't any in that particular blood draw. Just had mine too and confirmed this through my LLMD and Advanced Labs.
Posts: 219 | From pacific nw | Registered: Jun 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I think its dangerous to think that someone is infected no matter what. There are so many other reasons a person may have symptoms such as mold, parasites, co-infections, heavy metal toxicity etc.. That is why a professional opinion is so important. So many on here are treating with a negative test thinking that this is what they have and then keep treating because symptoms from inflammation from chronic antibiotic use are mistaken for lyme symptoms. Advanced labs testing is supposed to be some.of the best testing available.
posted
Amen for you Lululy. I feel like every time I share something about a test here I'm lashed out at with well its only negative if its positive... I think you know what I mean. How negative that is. Be thankful folks that advanced has come up with such a test, and be thankful that work is being done to improve testing. Also.. Please realize that NOT every ache, pain, headache or some other feeling is LYME. My goodness.
Posts: 267 | From South | Registered: Oct 2011
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posted
I am happy. And honestly this site has a ton of negative and people who just think they are doctors with their advice. That's too bad. The over use of ABX I've read about to really creeps me out, that can not be healthy. I think I've made myself clear.
Posts: 267 | From South | Registered: Oct 2011
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posted
All I was trying to say is that not every test is false and not in every case is Lyme the culprit. :-)
Posts: 267 | From South | Registered: Oct 2011
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posted
Thank you, thank you to the many that wrote me about the over use of ABX. Nice to hear you agree. :-)
Posts: 267 | From South | Registered: Oct 2011
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posted
I think it is important to view things in balance. Everyone knows that there is much more research that needs to be done.
According to alot of LLMD's lyme triggers an inflammatory response that may remain after the infection is gone.
Also, the effects of treatment i.e. antibiotics need to be addressed.
I think most doctors are taking a two-pronged approach which is treating for the infection while building the immune system so that our bodies eventually destroy the infection without the use of antibiotics.
Tests results are not the gold standard necessarily. I think it is important to look at symptoms. How are you feeling? That to me is the key.
Posts: 538 | From kentucky | Registered: Nov 2011
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posted
I'd agree.. On the how are you feeling part, but what I read around here from to many is they think everything is Lyme related. Seriously.. That's just not right. You have to look at age, gender, your genetics.. Its more than just my head hurts the Bart is back. Or I'm feeling crappy cause I must be in relapse with babs. Come on already.. Really? Personally I'm at an age where hormones are a factor. So that headache or headaches near my cycle and sleep that's off.. That's not Lyme.. Its hormones shifting and that does not need a LLMD or an ABX to fix. Testing does leave many questions.. I think sometimes to many. Honestly..its the whole picture here that counts. Even emotions. If your more prone to be negative, your not going to feel at your best. So do you see what I'm saying? I've just read things on here that seem crazy. Like every little ache its back to Lyme. I think those that do theyreally need mental help more so than anything else.
Posts: 267 | From South | Registered: Oct 2011
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lax mom
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Member # 38743
posted
I took a bazillion antibiotics over the past year for clinical Lyme and many co-infections. I only got sicker and sicker.
I ended up with sepsis, and now liver problems (bile in my urine and elevated liver enzymes), a resistent strain of UTI infection...AND an immune system that didn't even try to fight any of this off.
What gives?
I don't know what's actually going wrong with my body. But after a year of antiobiotics, if it was purely a bacterial infection, I should have seen some progress.
Very depressing to go broke treating this disease and getting no where. I still have the same symptoms I started with, now with a new set of serious problems added to it.
posted
Sorry this is off topic but lax mom is there a relation between sepsis and anitibiotics or was your sepsis unrelated? I saw another post about recognizing sepsis. Thank you and I hope you get well
Posts: 92 | From New Yorl | Registered: Jan 2012
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lax mom
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posted
They have no idea how the sepsis started. I think it's all related. My immune system was compromised by all of the infections and treatment.
I was on a billion antibiotics, so resistent bacteria could easily form. Also, lots of other infections can hide because it feels like herxes or Lyme symptoms.
So, going back to lost11's post, everything symptom isn't always Lyme.
Antibiotic resistance is no joke. I always thought of resistance in terms of Lyme. Other small bugs in our bodies can get resistant to abx because of Lyme treatment.
posted
I'm sorry LAX mom. I hope your better. There is a very big link to getting sepsis from ABX. I've read it on the inserts of a Zpack. Sepis can kill quick. IMO.. Those who treat with over loads of ABX are really asking for it. Its to bad.
Posts: 267 | From South | Registered: Oct 2011
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Summer3
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Member # 35286
posted
I think you have to put the risks of long-term antibiotics in perspective though. Untreated or under-treated Lyme and co-infections certainly has it's own risks. Many of those risks can be disabling and sometimes even fatal.
Herbs can have risks as well. For some of us, long-term treatment (whether through herbs or abx) is the only thing protecting us from relapses and progression.
As someone who was completely anti-medication prior to contracting Lyme, I have NO problem using abx long-term based on the amount of research I've done on the topic.
I agree that every symptom should not be immediately attributed to Lyme and co. Especially if you have known comorbidities. However, I think it's risky to ignore returning symptoms for too long and allow Lyme to completely relapse instead of getting on top of things right away.
Posts: 1129 | From USA | Registered: Dec 2011
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dbpei
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posted
This is an interesting thread. I often wonder if there is something that I have been missing with regard to my illness - that is beyond lyme.
I am wondering if a different problem may have caused my hearing loss and subsequent neuro symptoms besides lyme disease.
My Western Blot never tested positive - and was identical when I tested again a year later after ABX for 1 year.
IGG - positive for 41 and indeterminate for 39. IGM - positive for 41, 18, and indeterminate for 39.
Antibodies for herpes, anaplasmosis, and RMSF all showed up, but apparently are no longer active.
Just wondering if my immune system was able to fight lyme and co. for years until something happened to upset it. Mold? Reaction to dental work? Reaction to flu vaccine? Parasites from contaminated well water? It is all a mystery.
Posts: 2386 | From New England | Registered: Aug 2011
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lax mom
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Member # 38743
posted
quote:Originally posted by dbpei: Just wondering if my immune system was able to fight lyme and co. for years until something happened to upset it. Mold? Reaction to dental work? Reaction to flu vaccine? Parasites from contaminated well water? It is all a mystery.
lax mom
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by Summer3: I think you have to put the risks of long-term antibiotics in perspective though. Untreated or under-treated Lyme and co-infections certainly has it's own risks. Many of those risks can be disabling and sometimes even fatal.
In my case, Lyme and co may be fatal years down the road, but sepsis and antibiotic resistant bacteria can be fatal immediately.
I am now looking into other ways to help my immune system get stronger to start fighting these bugs on its own.
Summer3
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posted
quote:In my case, Lyme and co may be fatal years down the road, but sepsis and antibiotic resistant bacteria can be fatal immediately.
I am now looking into other ways to help my immune system get stronger to start fighting these bugs on its own.
Right, if you're in immediate danger, obviously that comes first, but in terms of long-term outlooks...........I think a lot of people absolutely NEED abx to have any quality of life with this disease. After all, it is an infection.
Some people cannot get any improvement from immune support and herbal protocols alone. If you can, that's great. You're fortunate that you found something that works for you. Since we're all different, the same thing doesn't work for everyone.
So I don't think it's "creepy" or weird for people to do long-term antibiotics if that's what works for them. It's a personal choice. You will find that MOST LLMD's use abx at some point in treatment. They also use herbs. Lyme treatment is tailored to each individual's circumstances.
Posts: 1129 | From USA | Registered: Dec 2011
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posted
I struggle with this issue so appreciate all the views shared. I hate taking these abx. But really fear getting worse. Right now I feel 80% and have for several weeks. Now what do I do? I'm tempted to stop taking the Tindy I am on within another month or so and see what happens. I still have babs tho and maybe Bart...ugh.
How long is long? In other words, are abx for a year ok for the most part? When do you enter the danger zone??
Posts: 342 | From Philadelphia | Registered: Dec 2011
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lululymemom
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posted
I personally believe anything past 6 months is too long. I believe alternative treatment can be beneficial after that. It took my daughter 2 months of feeling very symptomatic once she stopped abx but then started to improve on alternative treatment. Most success stories with the rare exception of one or two i read on here were attributed to using alternative methods after abx. I would also like to add there have been several who have died while treating agressively with abx.. Was that attributed to lyme or the treatment itself? We will probably never know. . All i know is many who are treating with herbs and alternatives are doing okay.
posted
Lulu.. We come from the exact same school of thought so it felt real good to read your post. I too have read of more Lyme related passings due to secondary infections due to over treating with antibiotics. I refuse to even touch that. Some don't realize that the pills they are gulping down now could and most likely will catch up with them down the road. Its pretty serious stuff. Lyme alone is toxic. Add more toxins like ABX to an already taxed immune system and look out. I'm just one person and this is simply my opinion. Based upon the number of private messages I received regarding this thread, it is refreshing to see I do not stand alone. Thanks to those who read this.
Posts: 267 | From South | Registered: Oct 2011
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lax mom
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posted
I agree with lulu and lost.
I posted on another thread that my CD57 was 88 when I began treatment. One year into treatment, my NK cells are now considered non-functional at 3. Scary stuff.
CD57
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Member # 11749
posted
I sometimes wonder if the abx treatment itself does more harm than good. Like LAX Mom, what's up with the NK cells at 3 now? I'm having similar issues with my immune system....it seems to be worse now than before I started treatment. I now have low IGG, serum, and subclasses, where before I didn't. And abx are also not helping.
We need to do something about the immune system it seems to me. I'm taking a bunch of immune system support things now, like medicinal mushrooms, etc.
And I'm still symptomatic for active infection. LAX Mom, is parasite treatment still helping you?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I don't believe it is ever just 'lyme.' Why do some people get bit and get the rash and never have symptoms? I think there is a lot more at play: genetics, mold, methylation issues, diet, viruses, other infections, parasites etc etc the list is endless.
I think it's most imp to go off of how you are feeling.
I have done very well on abx the past year and have my brain back.
All of my testing has always been in range and I had a great Christmas, as opposed to last year.
I think people are too quick with their personal opinions, as no one really knows 100% about anything with this crap I feel like.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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poppy
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Member # 5355
posted
It is not a good idea to project your own personal situation onto others. Make your own decisions about how you want to treat, how long, how much symptomology you can tolerate. It is your decision, so do what you want. But this may not apply at all to other people.
Some of us require ongoing treatment to stay functional. We know when the symptoms are returning and what to do about it and would love to just quit or do "natural," but it has nasty consequences. It is true that this course of action is far from ideal, but no one has found anything better for us to use. The medical establishment isn't even looking, doesn't care. So we are on our own.
But if you think about other chronic diseases, they are not very well treated either. Cancer, diabetes, heart disease, parkinsons, alzheimers, als, ms, etc, etc. The current situation in chronic diseases in general is lousy.
Posts: 2888 | From USA | Registered: Mar 2004
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lax mom
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posted
CD57: I am sad to say that I now feel just as sick as I was prior to treatment.
These diseases are so frustrating and filled with false starts and dashed hopes.
I felt great after 2 days of Biltricide. However, I was also on Cipro for a UTI...so who knows. I did 14 days of Pyrantel pamoate and felt wiped out.
I'm set to start another round of anti-parasitics in a few weeks.
So now, I am only on a small dose of Nitrofuerantin to prevent a chronic, resistent e.coli UTI from turning into sepsis again.
I am also on Diflucan, Lipo-Health, Mila and Nebulized Glutathione.
I feel like I need to be on antibiotics as I can feel my brain slipping away into a fog again. All I want to do each day now is sleep and sleep and sleep.
But I've been burned by the serious consequence of my own long-term antibiotic use (sepsis, non-functional NK cells)...so I'm scared and stuck.
Plus I have a new crop of viruses and M. Pneumonia that my immune system can no longer keep down (EBV, Parvo even HSV1). I had the Dr's test me for HIV, 2x (negative) because how can a person who was always healthy, develop a non-functional immune system at 38?
I feel like a mouse stuck in a maze. I keep finding a path, get my hopes up, then hit my head against another dead end wall.
posted
Buffy.. I've had 3 blots and PCR testing. Oh and every CO infection under the sun.. All negative. This spans over 3 years. Oddly enough the last ignex blot was IGM positive and never was before. I sent that out along with my history to get 3 opinions. All agree odd and probably false negative. In chronic Lyme more often then not its the IGG that yiuve for. Never positive for that. I've had such in depth testing I feel comfortable enough to say any remaining minimal symptoms are not do to a parasite or an active BB infection. For me.. I've kicked it. I feel 150% GREAT. And I'm very happy about that.
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