Testing directly for spirochetes?

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goldengoose
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Date Joined Sep 2016
Total Posts : 99
   Posted 2/3/2018 2:02 AM (GMT 0)   
I'm sure this has been asked before. But I feel that a lot of my anxiety comes from not knowing if im doing the right thing by treating Lyme instead of anxiety and depression that has plagued me for 10 years now. For some people they can remember feeling "normal" and the going downhill quickly after an infection, hiking trip, etc.

Unfortunatly, I got Lyme for the first time in 4th grade back in 2001. I got better after 2 weeks of treatment but as somebody who grew up in southwestern massachusetts in the woods, I remember getting bitten by ticks several times throughout junior high and high school. My health slowly deteriorated throughout highshool: tension headaches, TMJ, anxiety, dizziness, etc, stomach problems. These things could be Lyme or Anxiety....

My tests are looked at as postive for lyme by LLMD but negative (for chronic lyme) by the other 99% of doctors. This makes it very difficult to be confident I'm doing the right thing. Prozac and Klonipin literally saved my life in 2009 when I was a freshman in college, but Ive always felt something wasnt quite right and after getting very ill in 2016 I started to see an LLMD who of course blamed all my symptoms on chronic lyme. (by this time I had been treated with 2 weeks of doxy 5 different times)

I would be much more comfortable continuing with treatment (which has made some progress) if I knew, without question, that the spirochetes are still inside me. Ive been on abx for 16 months, but recently have been having some awful anxiety and depression which follows. You would think that feeling physically much better and being off antidepressants would have me thinking positve and looking forward to continuing treatment, but I am literally scared crapless of these ruminations and anxiety attacks. I cannot help but question myself and if going back on anti anxiety meds would be the right thing to do. (Im also missing out on life and living alone doesnt help)

Tough thing is there are reputable doctors on both sides of the arguement...which puts it on me to choose what to do. If I could show even a cdc a actually picture of a spirochete inside me, how could they argue against an infection?

Thanks!

aphysicalwreck
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Date Joined Sep 2012
Total Posts : 652
   Posted 2/2/2018 10:20 PM (GMT -6)   
Goldengoose
I totally understand what your dilemma is. Unfortunately I dont have an answer for you. Are your other Lyme symptoms better? Maybe the anxiety and depression is unrelated to the Lyme.

Also, have you ever been Lyme tested from igenix in California? They are one of the best labs for Lyme. If not, maybe you should invest in that. Even if a few bands show up it might give you a more positive attitude on whether you have Lyme.

I hope this helps. I am sure other more knowledgeable people will chime in.

Dahlias
Veteran Member


Date Joined Jun 2017
Total Posts : 518
   Posted 2/3/2018 1:21 AM (GMT -6)   
I don't have an answer about the tests, but can't you treat both ways if needed? There are people treating for Lyme who are on antidepressants.

Depression and anxiety are pretty common symptoms of Lyme and coinfections (which is not meant to minimize the seriousness at all!), and sometimes a herx can manifest that way too. Are you detoxing?

Are you taking one antibiotic or a combination? Do you still have physical symptoms?

goldengoose
Regular Member


Date Joined Sep 2016
Total Posts : 99
   Posted 2/3/2018 10:17 AM (GMT -6)   
My physical symptoms have definitely improved since they got really bad all of a sudden in Fall of 2016. ( at this point I could barley get out of bed...) My fatigue is greatly reduced as well as muscle soreness etc. The problem is my anxiety is still very much still an issue and its tough to tell whether I have anxiety/depression along with Lyme, just anxiety and depression, or just that Lyme has caused anxiety and depression over the years.

I am currently on a break from the abx I was on and seeing if going back on 10mg of prozac a day will help. (this is all with doctor, my LLMD, permission)

I was on compound Tetracycline Loxo 3x a day, along with Fluconasol to control yeast. I see my doctor again on Tuesday so I will see how that goes.
Been treating chronic lyme since Mid-2016. Now on Compound Tetracycline 500mg 3/day with Fluconazol for yeast control. Formerly on Clarithromycn and Plaquenil and before that a whole bunch of other stuff including the Buhner Protocol, other herbal remedies.

Western Blot Positive tested IGM Serum 2.6? Other Western Blots - IGM - 41 and 23. CD-57 = 34L.

lymeInNEPA
New Member


Date Joined Jan 2018
Total Posts : 17
   Posted 2/3/2018 12:03 PM (GMT -6)   
Hi Goldengoose,

Something I read recently may help if you have access to a RIFE machine in your area. I wish I can find exactly what I read but it was along the lines of a scientist in a lab exposing spirochetes to various frequencies and observing the results in hopes of killing them. He also subjected himself to the frequencies that day in the lab and herxed badly that night that he realized he had lyme. I thought that was interesting in everyone's search for the positive test.

Keep on keeping on....

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/3/2018 1:06 PM (GMT -6)   
"If I could show even a cdc a actually picture of a spirochete inside me, how could they argue against an infection?"

Well, I had a fully CDC positive Western Blot for Lyme and RMSF and they ignored it - both state and federal registers do not have any reported Lyme cases for 2008, which is when I had my tests. So, yes, they can and do still deny that a person has Lyme, even if they can see spirochetes in the person's blood, or are able to even test fully positive by their standards (which are very faulty).

The one thing that jumps out at me is that yes, you have been treated 5 times - but only for 2 weeks each time, which is a significant under treatment. You should have been in treatment for another 6 weeks after that, for a total of 8 weeks minimum in order to heal these infections. My own husband was infected, and because I advocated for him (read that as made sure the doctor understood what was happening and how to proceed), he healed very well with just 8 weeks of treatment with Doxy.

Another thing that you do need to understand is that 99% of doctors don't learn about Lyme in school. They have a very brief time dedicated to it, telling them that it's hard to get and easy to treat, there are very few that they will ever see (if any) in their practice - not to mention that the CDC is actively calling doctors and clinics to remind them of the CDC's stance on Lyme and treatment of these infections and how they should be careful to stick to the CDC's guidelines.

This leaves those of us with these infections only one option - to seek out one of these brave doctors that choose to 'buck the system' and learn on their own about these infections. Those that do are almost always LLMD's, so that's who we suggest Lyme patients see and rely on. They may not have all the answers, but at least you don't have to start by arguing whether or not you have Lyme and other associated infections usually. I my 45 years of being ill with these infections, I've only had 2 doctors believe I had these infections - and yet, treatment for these infections is the only thing that has ever made a difference in my health.

The fact that you have made some progress shows you that you are going in the right direction with your treatments. But, because you have had an increase in some other symptoms, it makes me think you are likely herxing, so the next question is what are you doing for detoxing?
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Dahlias
Veteran Member


Date Joined Jun 2017
Total Posts : 518
   Posted 2/3/2018 2:56 PM (GMT -6)   
Since you still have the other symptoms to some degree, you still have Lyme, whether or not the anxiety and depression are caused by it as well. It is recommended to treat chronic Lyme until symptoms have been completely gone for 2 months (if I remember the time period correctly). And most LLMDs treat chronic Lyme with a combination of antibiotics now for greater effectiveness. I hope the Prozac brings you some relief!

goldengoose
Regular Member


Date Joined Sep 2016
Total Posts : 99
   Posted 2/3/2018 9:12 PM (GMT -6)   
Traveler, I dont think (if I do have Lyme) that I got it 5 different times. Whenever I would be feeling extreme fatigue and depression, I would go to a clinic and they would run a western blot. All of my tests have always come back somewhere in between positive and negative with an IgM marker of 23 and 41. The doctor would say "Ohh maybe its Lyme" and treat me with two weeks of doxy. My fear is that I will always show these markers, that my symptoms may just be from anxiety and depression wreaking havoc on my body. I mean, if somebody has depression or anxiety (they almost always come together) and shows a couple markers on the WB, I feel the symptoms are so similar to Chronic Lyme that an LLMD would treat for chronic lyme.

The problem with this way of thinking is there is really no explaination of why I would get better from some of my symptoms while being treated for chronic lyme. During this time I have gotten off my past meds of 60mg of prozac a day as well. So shouldnt I be doing horribly now?

It is very confusing and has me going a but crazy trying to figure it out. My whole family seems to have anxiety and maybe I just got it a bit worse. My sister has even been on and off many different psych meds and had extremely similar symptoms to me earlier in her life. Who knows, maybe she has chronic lyme too.... But shes doing fine now without ever treaing or testing for Lyme.

I just hate to continue to suffer like this without knowing. Prozac got me through 8 years while being able to live life fairly normally. I dont blame anybody with Lyme, people do have chronic lyme, but people also suffer from depression and anxiety which effects them physically. When an LLMD tells one of these people that its not depression but a bacterial infection, of course they are going to believe them, people want to believe they can get better from their ailments. I just fear ive been convinced of something that may or may not be true because I dont want to "believe" that im natully a bit depressed with anxiety..

Thanks all!
Been treating chronic lyme since Mid-2016. Now on Compound Tetracycline 500mg 3/day with Fluconazol for yeast control. Formerly on Clarithromycn and Plaquenil and before that a whole bunch of other stuff including the Buhner Protocol, other herbal remedies.

Western Blot Positive tested IGM Serum 2.6? Other Western Blots - IGM - 41 and 23. CD-57 = 34L.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/4/2018 12:21 PM (GMT -6)   
Well, first of all, band 23 is highly specific for Lyme - nothing else will produce a positive on that band. And as for band 41, that is one of the most common bands with any Spirochetal infection - but there aren't many - Pintas, Yaws, Syphilis, Leptospirosis...and Lyme (Borrelia) species. That should be able to help you narrow down why you got Band 41 positive - but you have Band 23 positive because you have Lyme disease.

The problem was the 2 weeks of treatments - they simple weren't long enough, and now you are dealing with chronic Lyme - and maybe other infections that are now chronic as well. That's how I "came into this" - with all chronic infections, due to them being missed for over 37 years by the time I was properly diagnosed.

With Lyme, but more so with chronic Lyme, symptoms rotate. We don't really get rid of them, they just leave for a while, usually replaced by other symptoms, although many of us have periods of relative health from time to time as well. This is due to the relapsing/remitting tendencies of these bacteria. And why so many chronic Lyme cases are missed - we seem and act and feel fairly normal during some periods, even though we have infections that are ongoing and causing more and more damage and dysfunction.

Combined with the fact that you actually felt better with some of your symptoms with Lyme treatment. You have Lyme, but it's never been properly addressed, so while you do feel better while in treatment for Lyme, you aren't healing because you aren't in treatment long enough.

The need to specifically address psych symptoms generally points to not only Lyme, but Bartonella as well. So is it possible that some of your symptoms are from Bartonella?

My anxiety, depression, Depersonalization, paranoia and other psych symptoms got pretty severe during times - to the point that I've harmed myself, and have worried my husband tremendously and it was all due to my infections. We know that these infections can have this effect on some people.

The other thing is that depression can often be eased by taking anti-inflammatories, as inflammation in the gut and brain do contribute, so if you are dealing with depression, it's a good thing to address as well.

Of course, no one can say for certain that your Lyme is what is causing your anxiety, although we know you have Lyme, or you wouldn't have tested positive for Band 23.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

goldengoose
Regular Member


Date Joined Sep 2016
Total Posts : 99
   Posted 2/4/2018 8:08 PM (GMT -6)   
Traveler,

Again, thanks for your post.

So, if I do heal completely from the borrelia I should no longer test postive for these bands (23 and 41) on my IgM? My doctor is pretty confident that I will make a complete recovery if I stick with this treatment plan for several more years.

The anxiety and depression that I suffer from does indeed come in cycles. I think if I was completely healthy, I would still be a type A personality, my whole family is, but I think having to deal with "Lymeland" and its craziness has made my anxiety and depression come out much more than they would normally. Also, being sick and the isolation this causes is a tremendously difficult thing to deal with. Knowing that I still have a lot more to go through is daunting to say the least. I'm 27 and I just want to live my life! That being said, I really do realize I have progressed. I wish I could be more "hands off" and just "trust the process" but unfortunatly I'm just not put together that way...
Been treating chronic lyme since Mid-2016. Now on Compound Tetracycline 500mg 3/day with Fluconazol for yeast control. Formerly on Clarithromycn and Plaquenil and before that a whole bunch of other stuff including the Buhner Protocol, other herbal remedies.

Western Blot Positive tested IGM Serum 2.6? Other Western Blots - IGM - 41 and 23. CD-57 = 34L.

Evanston1
Regular Member


Date Joined Jan 2017
Total Posts : 410
   Posted 2/4/2018 9:21 PM (GMT -6)   
I’ve been able to see live spirochete in my blood on two different occasions using dark field microscopy. The first time was a couple of months after I got bit and I recently saw it again a couple of weeks ago. It’s abo****ely disgusting. Happy to send a video I took of it. You have to send me your email and I could forward it to you that way.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 231
   Posted 2/4/2018 10:49 PM (GMT -6)   
IMO you should see results after 6 months, much longer than that and other infections or treatments should be considered.

goldengoose
Regular Member


Date Joined Sep 2016
Total Posts : 99
   Posted 2/4/2018 11:06 PM (GMT -6)   
Evanston,

I just watched some videos on youtube. It is indeed gross. I'm just wondering why, if we can actually see the borrellia, why LLMD's arent using this method to report chronic cases to the CDC, Medical Establishment, etc. Is there a way to decipher Lyme spirochetes from other spirochetes? Are there reliable labs that can do this testing. I understand it may take multiple attempts before finding the spirochetes, but it would be worth it.
Been treating chronic lyme since Mid-2016. Now on Compound Tetracycline 500mg 3/day with Fluconazol for yeast control. Formerly on Clarithromycn and Plaquenil and before that a whole bunch of other stuff including the Buhner Protocol, other herbal remedies.

Western Blot Positive tested IGM Serum 2.6? Other Western Blots - IGM - 41 and 23. CD-57 = 34L.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/5/2018 11:06 AM (GMT -6)   
Goldengoose, no, you will likely always test positive for Borrelia. The only time the bacteria can all be eradicated from the body is if the infection is caught at the very early stages - within weeks of the infection starting. Even then, not all heal well, and go on to develop chronic Lyme. Sorry, I'd love to post nothing but positive things, but I'm a realist and feel that we should know the real truth about this.

The thing about this bacteria is that once it goes chronic, we never get rid of every Borrelia bacteria, but our immune systems are capable of keeping it in check - at low enough levels to not create symptoms (which is why we use symptoms, or the lack of symptoms to guide us) - even though we will still possibly test positive. It's not known if we will ever have a time of testing "truly" negative (not from faulty testing, but honestly not producing antibodies from Borrelia). This is why it's good to be sure that you support your immune system and general health, even after you have healed.

I would never encourage someone to be more hands off with their treatments!!! We are dealing with doctors that are humans, they make mistakes, get overloaded, and other issues that they may have - and if you are quietly doing what you are supposed to be doing and just trusting the doctor, that often ends not so well either with these infections. We encourage everyone to ask questions, and get the explanations of what the treatment is, what is the expected outcome, and what each med should be doing to help. We can't beat this if we aren't highly informed as well, especially once we are dealing with chronic infections.

As far as not using dark field testing for diagnosis, well that is on the CDC. They have to recognize each test as valid for it to count. That's why we are left with such horrid tests! They miss up to 50% of those that actually have these infections, and the CDC has come out and said that it may take many times of testing before a person gets a positive test, and that they should start treatment if they believe they have been exposed to Lyme.....right, get a doctor to follow that!!!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/5/2018 12:48 PM (GMT -6)   
There is a lot of focus on lyme on this thread, but I'm curious if you were treated at all for any coinfections - especially bartonella and babesia?

I'm a very analytical person, and it's tough not having good tests for all of these pathogens. I did test previously with IGenex, but I switched to Advanced Labs when I went through a period of doubt of whether I was on the right path. They take a picture of the spirochete that they found and send it back to you in the lab report. It was conclusive for me.

Please understand that depression/anxiety are symptoms and showing that your body isn't functioning properly for some reason. Perhaps it's a pathogen causing havoc, a vitamin/mineral deficiency, a system in the body malfunctioning (perhaps in part due to genetics), combinations of any of these, etc....

One of my kids was severely depressed for years from these pathogens. It was a very stubborn symptom to resolve, but we did indeed resolve it. However, it took persistence and a lot of trial and error. Much better outcome compared to a life long diagnosis of depression that they will only treat with life long pharmaceutical medications. (Please note that I'm not against people using these if they need to, but I do hope people will look at resolving their body's malfunctions so they are not on these medications for their full lifetime.)

As for the doctors, nearly all of them were clueless on my son. Had I listened to the "so-called" experts, he would have never healed. Fortunately, I found a funcitonal medicine MD who set me on the right path and helped us tremendously.

I'm truly sorry you are suffering so much. Wishing you the very best in your healing journey.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/5/2018 2:46 PM (GMT -6)   
1000Daisies, what infection was it that was causing your son so much issues with depression? I know that this will vary, but I'm always curious to see what infection others have been able to connect with certain symptoms.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 2/5/2018 3:06 PM (GMT -6)   
Traveler, I wish I knew for sure. It really is a guessing game!

Personally, my feelings is that lyme wasn't our main issue. I feel that bartonella and babesia are much bigger issues for my kids/me than lyme ever was (our functional medicine MD agrees!).

For his depression? Was it the pathogens themselves? The treatments (abx or various pharmaceutical medications over the years)? Damage from both? I feel it likely was a combination of these things. I definitely feel there was some "damage" from pathogens/treatment that was really difficult to recover from.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 2/5/2018 3:20 PM (GMT -6)   
I understand the difficulties in trying to figure out what caused what!!! I've pretty much given up on trying to figure that out for myself, but I know that for some, it's fairly clear.

Well, one thing is for sure, I'm very happy to hear that your son's depression cleared up!!! That can be very wicked with these infections/conditions!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
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