After a long time of joint issues that I thought was aging, and new muscle aches etc, and a burning knee ligament, I finally asked for a Western Blot Lyme test, and all 10 of the IGG were positive, with the 3 IGMs negative. My Dr indicated that means this is not recent infection. He ordered a PCR test, and he wants me to take Doxy orally for a month. (He said new research he's read shows the IV antibiotics are not any more effective so just go with the pills).
Is there more to this?
My research shows for example that Lyme doesnt seem to ever fully leave the body, which made me worry. But others have said even long term infection usually clears with antibiotics.
posted
Antibiotics can reduce your symptoms, but as far as I know once you've reached the chronic stage Lyme will always be with you.
This doesn't mean you will always feel awful. Remission (as in no worsening of current or new symptoms) is possible.
I wish you all the best.
-------------------- Ishandra. Posts: 55 | From Texas | Registered: Aug 2018
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Brussels
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Member # 13480
posted
You can start with doxy, but usually lyme does not come alone.
Talk to your doctor about coinfections, like babesiosis, bartonellosis... If he knows nothing about them, or think they are irrelevant to treat, that no one gets those coinfections, just change doctors.
It means, he knows little about chronic lyme.
I wish you good luck with your first 28 days of antibiotics. If that clears most of your symptoms, you'll be a lucky guy.
After that, I would read about herbal treatments or natural treatments to improve immunity, to support your health, so that you don't fall ill again.
Once infected with Borrelia, it will never leave your body for good.
So you don't have to worry about eliminating all Borrelia from your body: it's impossible.
Same as with herpes, EBV and many other pathogens: once infected, they'll remain dormant or active in your body.
So the only thing you gotta do, after the load of Borrelia (and other coinfections) go down, think about eating health, exercising, taking supplements AND herbs to modulate your immune system, so that these dormant beasties do not come back to bother you.
My daughter and I are in remission for the last 10 years, we are still being reinfected by new tick bites, but somehow, our immune system got stronger with the years, I think, and we don't fall ill again...
There are many other people in remission here, but many still fighting badly. It's not easy when you're not in good shape at start. But if your health is not that bad at start, your chances to get better are much higher.
But in my opinion, staying healthy is more like a choice of life style than treatment.
I don't want to risk being as sick as I was, or to let my daughter being as ill and in pain as she was, so I do my best to keep living healthy.
there is a lot of support you can get from supplements and herbs, after you treat with heavy drugs.
We don't even treat with drugs anymore. We haven't touched any drug for at least, 5 years, not even aspirin... No need, in our case...
but at start, we did take antibiotics because we thought, they were the strongest treatment. Now we would have done different, but there had been a lot of trials and errors we did in the last decades...
So we would do different now, just because of long years of experience.
wishing you good luck, and hoping you are not starting from a very bad starting point (healthwise).
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thanks for the replies. What co-infections should I ask for testing for?
As to my health, not all that bad but joint and tendon/muscle issues, and I'd have to say some fatigue or low energy which I thought was just getting older, now thinking it is the Lyme.
I do know that shortly (3 mos) after I think I may have been infected, I was put on doxy for something else for around 3 weeks.
Not sure if that would have helped but since I have joint and muscle pains as a main symptom, and this very positive test, I'm thinking not.
just spoke with someone today who said he has had lyme four times. said doxy is "nasty stuff" (not sure what he meant) so I assume thats what treated him. he said it is never fully gone from your system so I am confused why the antibiotic at all then?
thoughts?
Posts: 16 | From New England | Registered: Sep 2018
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Brussels
Frequent Contributor (5K+ posts)
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posted
It's a myth that antibiotics heal, specially concerning chronic infections, or low grade infections.
Treatment of lyme, with or without antibiotics, aim to lower the number of pathogens, so that your body can take care of the rest.
Nasty probably meant, because of herxheimer reactions.
Go to the first posts of lymenet and take your time, read about it. Google Burrascano, Stephen Buhner, Dr Cowden, Dr H*, and you'll have enough to start.
You need at least, a couple of weeks, many hours spent on the literature to start understanding the complexity of the problem.
Give particular attention to herxheimer reactions - die off reaction, so that you are already informed in case doxy makes you feel worse or miserable.
I think you are in good shape, you don't need to be as desperate as most of us here, but just treat as well as you can, so that lyme does not become the center of your life for the next years.
And think long term.
Very few people get rid of chronic lyme with one round of doxy, with 10 days, 20, 30, even 2 months, or more of only doxy.
I don't believe they will. If infection was fresh, maybe, but not for chronic lyme. It will probably eventually come back, after a while, or never disappear, even during treatment. It depends on your immune system.
Know that taking any antibiotic, you will disrupt your gut flora, that is extremely important for healing.
So it's like chemio therapy logic: you may kill the bad cells, but also the good ones. SAme as with antibiotics: it will help a bit with pathogens, but it will disrupt the best gun your body has to fight them: your gut.
So, when you take the doxy, you'd rather take probiotics too, and when you finish doxy, you'll probably need immune support, gut support for some time, and hope that lyme won't come back.
Anyway, I can't explain everything, the best is to spend a few days reading about chronic lyme. Here on top of the forum, there are some nice threads for beginners.
No need to be that afraid, if your health is in good shape. Just read to inform, to know who exactly is your doctor, what treatment to expect from him, what you gotta do on your own to support your body etc.
Reading is your the best starting point, when you start dealing with chronic lyme. It can't hurt to inform yourself.
quote:Originally posted by Lymey64: said doxy is "nasty stuff" (not sure what he meant) so I assume thats what treated him. he said it is never fully gone from your system so I am confused why the antibiotic at all then?
thoughts?
- Take the doxy anyway. You could make great progress and recover your health. Life has no guarantees on anything.
Doxy will eat your stomach if you do not take it in the MIDDLE of a FULL meal each time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Should I get the spinal tap to check for spinal infection first, or just skip that and start the doxy? I was given the choice. (The doxy would give a possible false negative on the spinal tap)
Posts: 16 | From New England | Registered: Sep 2018
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Bartenderbonnie
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posted
It sounds like you are working with your primary doctor or a main-stream doctor.
You will need a ILADS trained doctor for proper treatment. I say this because a Lyme Litterate Medical Doctor (LLMD) will tell you that a body infected with borrelia can throw IgG or IgM antibodies at any point during their illness. There are many reasons for this, western blot testing being one of them.
It has also been stated that Lyme patients with the least amount of reactive bands, are the sickest. Their disfunctional immune system cannot recognize the pathogen and are unable to mount a defense. Your strong immune system response is probably why you discounted your symptoms as merely aging. But because of your symptoms, you now need treatment.
According to leading LLMD Dr H ;
"Since MRI's, SPECT scans PET scans of the brain are not able to definitively determine if a patient has neurological Lyme disease, physicians will occasionally perform a spinal tap and look at markers in the spinal fluid to determine if borrelia burgdoferi has invaded the central nervous system (CNS)."
"Unfortunately spinal taps also have their limitations. Although increased antibody production in the spinal fluid can be seen in early Lyme disease with lymphocytic meningitis or encephalitis, in late stage neurological Lyme disease, patients can have a normal cerebrospinal fluid (CSF) antibody studies."
"Lyme patients can have a negative blood test and a negative spinal tap. Therefore it can be concluded that neurological infection by B. burgdoferi should not be excluded solely on the basis of normal routine CSF or negative CSF antibody analyses."
Treat the patient, not the tests. Lyme disease is a clinical diagnosis. A LLMD would start treatment.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Thanks Bonnie, I was leaning away from it anyway. I will call for my doxy scrip right away and start. It's encouraging (I think) that having all ten bands means my immune is reacting to that many different aspects of the pathogen.
I *think* that the doxy will knock down the Lyme population (whatever it is) and allow the immune system to control what remains(?) hopefully.
I wonder what coinfection pathogens I should ask for tested, if any?
Bottom line so far, I am strongly getting the impression that this germ is never going to be cleared from my system, but knocking it down now will allow the immune system to keep it in check. I hope anyway!
as to the LLMD, I have no idea who to look for or is this would become my primary or just a specialist. Will look into that next.
Posts: 16 | From New England | Registered: Sep 2018
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Bartenderbonnie
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Right you are Lymey64, you're a quick learner.
If you should need a LLMD, Lymenet can help. Just post in the 'seeking a doctor' topic.
Healing wishes.
Posts: 2977 | From Florida | Registered: Nov 2016
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map1131
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Member # 2022
posted
Doxy 100mg twice a day for 30 days will not benefit you. At the chronic state 400mg-600mg daily for 30 days will not even kill off enough to help.
Forget that spinal tap. Hold onto that copy of those test results.
Start looking for a Lyme literate medical doctor right away. It could be several months before you actually get scheduled.
Do a web search of Lyme support groups in your area. There are support groups from coast to coast now.
Ask those in your area who they recommend for a Lyme literate doctor. Some support groups actually meet up monthly/quarterly, some groups are on private Facebook pages only.
This website has great info also. Use all resources to find what's best for you.
Most importantly, look outside the traditional medicine world. Natural treatments like herbals should also be considered.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Your regular doctor can order testing for co-infections but unfortunately most labs are highly inaccurate. If you get a LLMD, they will likely order testing from the speciality lab IGenex. This is all out-of-pocket expenses.
But CLEARLY, any LLMD would immediately start you on a better Lyme treatment protocol based on your VERY positive western blot. You have a decision to make Lymey64.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Agree - you can start with Lyme treatment now based on a VERY positive Lyme test! With a good LLMD - you can post in Seeking a Doctor for referrals.
Also, here's my point of view on co-infections - look at a list of them - main ones being babesia, bartonella and ehrlichia - and see whether you think you match any of their symptoms. If so, go ahead and get tested if you want. If you don't match symptoms, I personally don't think there's any need to test.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by Bartenderbonnie: But CLEARLY, any LLMD would immediately start you on a better Lyme treatment protocol based on your VERY positive western blot. You have a decision to make Lymey64.
Couple questions then:
Doesnt "Very positive western blot" really mean that my immune system reacted well, and not that I have "more lyme infection" or whatever?
What would be a "better" treatment than oral doxy at this point?
My symptoms so far are muscle aches, joint pain and probably fatigue, all long term. I cant tell if I have any cognitive, maybe I do but thats very subjective.
I will research coinfection symptoms.
Posts: 16 | From New England | Registered: Sep 2018
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posted
I should add that I have some muscle twitching all over as well...
Posts: 16 | From New England | Registered: Sep 2018
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Bartenderbonnie
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Member # 49177
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If a patient has a positive test for Bb and is asymptomatic (no symptoms) then no treatment is advised. This is because the immune system has control.
You have symptoms which concern you.
Treatment protocols vary. This is a diagnostic guide for Tick Borne Infections. Most LLMD's follow this, along with additions and subtractions that they find works in their practice. It incorporates multiple high dose combination antibiotics, supplements and herbs, diet, exercise, life-style changes, sleep, and the monitoring of bodily functions. Lyme is a very complex disease. You must become your own health care advocate.
There are also many herbal protocols that are anti-microbial, antifungal, antiparasitic, and anti-inflammatory.
Lymet is a valuable research tool. Start a journal. Document your journey. Detail meds taken and how your body reacts. Put a star on your good days on a calendar to mark your progress. Get your finances in order-Lyme is expensive to treat.
Medical mainstream doctors will help you for 28 days and declare you cured. That's where a LLMD comes in to save the day and save your life.
Posts: 2977 | From Florida | Registered: Nov 2016
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quote:Originally posted by Bartenderbonnie: Medical mainstream doctors will help you for 28 days and declare you cured. That's where a LLMD comes in to save the day and save your life.
This is the official treatment. I think we established here that my 28 days (which started today) of doxy, could very well knock the population down enough for my immune to take over. And I was told here that my 10 pos bands shows a robust immune response to the lyme pathogen, so hoping that is exactly what will happen.
I'm hoping to be in the lucky category (like several people I know) who feel good after doxy or other antibiotics and stay well.
BTW my Dr said he just read a study that IV and higher dose antibiotics are not better on average than 200mg doxy for four weeks.
As to a co-infection, thats another matter. From my research, it looks like at least a third of lyme comes with something else, but the tests are basically useless. I think I am supposed to wait and keep an eye out for co-infection symptoms.
we'll see. as of now all the doxy has done is ADD a symptom, upset stomach!
By the way, we also can hope that new meds/treatment will be created in the future that really do eradicate the lyme, also vaccines to prevent infection in the first place.
Posts: 16 | From New England | Registered: Sep 2018
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Bartenderbonnie
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Member # 49177
posted
I absolutely LOVE your spirit Lymey64 !
Please post your progress. We would love to be included in your journey. 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Thanks Bonnie. Just a quick update my PCR whole blood lyme test just came in negative. I assume (think) this means my lyme infection is past the blood and not present in blood or not in enough quantity to detect, and has moved to the joints, and possibly nervous system, heart muscle, who knows where.
It also could be a false negative.
I had 10/10 WB positives, 3/3 negative IgM, have joint and muscle problems.
[ 10-03-2018, 04:01 PM: Message edited by: Lymey64 ]
Posts: 16 | From New England | Registered: Sep 2018
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PCR has shown utility for detection of Borrelia DNA from skin biopsies of EM lesions, as well as DNA from synovial and cerebrospinal fluid in late-stage disease. Borrelia DNA can also, rarely, be detected from blood.(6)
RARELY!
Found other references that PCR is "not useful" for detecting Lyme, presumable blood PCR analysis.
WARNING The more you learn about Lyme, the more ####ed off you will get.
I compliment you on your research. This will serve you well on your journey towards wellness. Keep up the good work.
Posts: 2977 | From Florida | Registered: Nov 2016
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Just a quick update my PCR whole blood lyme test just came in negative. I assume (think) this means my lyme infection is past the blood and not present in blood or not in enough quantity to detect, and has moved to the joints, and possibly nervous system, heart muscle, who knows where.
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