So I tested positive for everything that I was tested for...

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Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 12/31/2017 5:44 PM (GMT -6)   
Happy new year fellow warriors. "Our hope is not in the new year, but in the One who makes all things new."

It's been a few weeks since I got my test results. I had been waiting for this moment for so long! I was crying and laughing at the same time when I reviewed the paper... For two years I had been aware of me possibly having Lyme (three years of constant symptoms), but it was not sure, I didn't feel confident enough, nobody agreed to help me... but now my hope is renewed... Please take a look at these test results. I know what they mean, but if there is something more specific, some detailed info, some personal experiences or opinions that could help me understand even better, that would be wonderful. I'd like to make the most out of these expensive tests... There are lots of little things whose meaning I don't know, e.g. what does it mean when one's CD57 positive NK-cells HEPARIN (not the absolute count only) is below the range? Also do you think these results are reliable?

Lymeland is a mad place... I have been suffering so much, so so so much that I will never be able to explain it... yet now when I've got some "positive" answers, I feel like it's hard to believe. My symptoms are mostly weird neurological stuff, I'd like to tell them but it would make this post veeery long, haha... If you can, there's another thread where I tell about my situation ( https://www.healingwell.com/community/default.aspx?f=30&p=1&m=3948794#ttop ), but keep in mind that's not all, that's just a basic overview...

And of course if someone has any advice regarding treatment, that would be appreciated. I'd like to know very much which is the right order for action, what path to follow, where to go etc... but yes, I know there are no definite answers for those questions... But it would help if someone had ANY IDEA which of these infections could be "the most important"? 24/7 head symptoms are my main thing. Thank you.

LYMESPOT REVISED

Borrelia burgd. fully antigen 9 + SI < 2
IF-G**
Borrelia peptid mix IF-G** 0 SI < 2
Borrelia LFA-1 IF-G** 0 SI < 2

Borrelia IF-G review

The LymeSpot-revised Test indicates Interferon-gamma (IF-G) active T- Lymphocytes against Borrelia.

Borr. burgd. fully antigen IL-2** 2 + SI < 2
Borrelia peptid mix IL-2** 1 SI < 2
Borrelia LFA-1 IL-2** 1 SI < 2

Borrelia IL-2 review

The LymeSpot-revised Test indicates borderline Interleukin-2 (IL-2) active T- Lymphocytes against Borrelia. LymeSpot revised review If Interferon gamma is the predominant cytokine: The cytokine INF-Gamma (IF-G) is released predominate in an acute or reactivated state, but may also indicate a chronic infection. Further laboratory parameters such as the presence of IgM antibodies for an acute stage or IgG antibodies for late stage of Lyme disease have to be considered. In addition, the CD57 count, if decreased may indicate a chronic stage of disease. The clinical signs and and symptoms have also to be taken into account for the diagnosis of tick borne diseases. For Borrelia, the erythema migrant is a highly specific sign for an acute stage infection and Acrodermatitis chronicum atrophicans (ACA) for a late stage condition. However, medical history as assessed by a physician is essential, considering all differentials including other infectious and non-infectious diseases. During acute Lyme disease, an organism targeting therapy might be indicated based on the clinical symptoms and medical history.

(Hinweis Elispot / Lyme Spot !
SI <0-1=neg. 2-4=borderline >4=pos.)

IMMUNE STATUS

CD-57 positive NK-Cells Heparin 1 - % 2 - 77
CD-57 positive NK-Cells absolute 38 - /μl 130 - 360
Heparin

CD 57 FLOW CYTOMETRY

Natural Killer Cells Heparin 7 % 6 - 29
Natural Killer Cells absolute 214 /μl 60 - 700
Heparin

Review CD57

The CD57-cell-count indicates an immune-suppressive situation. CD57 NK cell count is considered as an additional parameter in chronic Lyme disease. The decrease is not specific for chronic Lyme disease, other co-infections may also been associatied with low CD57 count. Non-infectious immune diseases may also be associated with low CD57 count. Elevated counts may be associated with blood cell disorders. For the diagnosis of Lyme disease, other parameters such as the LymeSpot assay or serology have to be considered. Clinical evaluation and medical history as assessed by an experienced physician is essential for the diagnosis of the disease.

BARTONELLA ELISPOT

Bartonella henselae Elispot** 28 + SI < 2

Test result Bartonella henselae: The Elispot indicates cellular activity against Bartonella henselae.

BABESIA MICROTI ELISPOT

Babesia microti Elispot** ** 18 + SI < 2

Test result Babesia microti: The Elispot indicates cellular activity against Babesia microti.

MYCOPLASMA PNEUMONIAE ELISPOT

Mykoplasma pneu. Elispot** ** 30 + SI < 2

Test result Mycoplasma pneumoniae: The Elispot indicates cellular activity against mycoplasma pneumoniae.

CYTOMEGALO-VIRUS ELISPOT

Cytomegalo Virus Elispot 6 + SI < 2

Test result Cytomegalovirus: The Elispot indicates cellular activity against Cytomegalo-Virus.

CLINICAL CHEMISTRY

Leucocytes ** 5.1 tsd/μl 4.0 - 10
Erthrocytes ** 4.8 mill./μl 3.9 - 5.2
Hemoglobin ** 14 g/dl 11 - 16
Hematocrit ** 41 % 34 - 45
MCV ** 87 fl 79 - 95
MCH** 29 pg 26 - 32
MCHC** 33 g/dl 32 - 36
Thrombocytes** 200 tsd/μl 200 - 400
Neutroph. Granulocytes** 33 - % 34 - 71
Lymphocytes** 57 + % 19 - 52
Monocytes** 7.1 % 4.7 - 13
Eosin. Granulocytes** 2.6 % 0.7 - 5.8
Basoph. Granulocytes** 0.6 % 0.1 - 1.2

Post Edited (Eaglet) : 12/31/2017 6:59:00 PM (GMT-7)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1677
   Posted 12/31/2017 7:01 PM (GMT -6)   
Eaglet,

I replied to your other post. I'm not an expert on reading lab results, so I'll let others answer to that. I will say if your worst symptoms are weird head symptoms (I saw the more specific descriptions on your other post), then it sounds like babesia may be prominent. Neuroborrelliosis (Lyme) also causes neurological symptoms, but my impression from your statements is more babesia.

I have Lyme, bartonella, babesia, erhlichia. I'm currently treating myself using Stephen Buhner's herbal protocols. I started with the full bartonella protocol, since I thought most of my symptoms were from bartonella, and then added herbs for Lyme, Babesia, and now chlamydia pneumonia, as I have positive IGG and IGM titers.

There are lots of lists around of symptoms, but I have found these for babesia and bartonella to be very helpful.

www.gordonmedical.com/unravelling-complex-chronic-illness/babesia-like-organisms-bablo-consideration-signs-and-symptoms/

www.gordonmedical.com/unravelling-complex-chronic-illness/bartonella-like-organisms-blo-consideration-signs-and-symptoms/

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 12/31/2017 7:03 PM (GMT -6)   
I'm with you on the weird joy you get when you have positive results. After 6 months of bad lyme symptoms and my LLMD got my Igenex test and told me in her office, I had a grin from ear to ear.

She was a little surprised but I was happy. Happy to finally know with 100% proof. 6 months in I already highly suspected lyme and was learning to live with it and treating anyways.

It's good to know it's something that isn't "terminal" and you can greatly recover from it. I think that's where a lot of the weird joy comes from.

Unfortunately I don't know how to read these results, I know how to read igenex.

But based on your title you are saying you are positive for everything listed.

So my quick advice:

Make antibiotics a part of your treatment. However don't rely solely on it. Lyme and co is a multisystemic disease. It affects multiple parts of the body which is why it creates a large array of symptoms. ABX kills to a degree but it can't be the only thing you do.

But also don't skip ABX completely either. ABX is a good haymaker punch at lyme but it also takes a more finesse approach to getting your body back to good health.

Research all the different ways you can strengthen and nurse your body back to health beyond just antibacterials (whether it's ABX or antibacterial herbs).

Also during your treatment please take care of your gut where most of your immune system resides. The good bacteria in your gut is a natural "antibiotic" but without the possible negative side affects. It's your best allie.

The rest is just be the healthiest person you can possibly be. So diet, vitamins, detox, sleep, stress management.

If you do all this consistently and for a long enough period of time you WILL significantly get better. Will you ever be at the level of your pre-lyme days? Don't know. Will you ever be 100% symptom free. Maybe not (but maybe so).

But you can definitely get significantly better.

Lastly, have the correct expectations. It may take anywhere from 6 months to multiple years to reach optimal health. Once you have reached a personal "optimal health", be aware that the microbe(s) are still harboring in your system and if you don't take care of your self it can pop back up make you ill once again. So even after you get much better be cognizant of this. And it's your responsibility to fuel your body everyday to try and stay at optimal health.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1677
   Posted 12/31/2017 7:30 PM (GMT -6)   
dacarte,

That is such a great response. I need to print that for myself. Thanks, Buddy🙂

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 12/31/2017 7:49 PM (GMT -6)   
"........what does it mean when one's CD57 positive NK-cells HEPARIN (not the absolute count only) is below the range? Also do you think these results are reliable?.."

When cd-57 is mentioned, its usually the absolute count, and yours is low. I have seen another term in place of Heparin, dont recall what it was- depends on what lab does the testing. Ive used two different labs.

Cd-57 alone through LabCorp in the US was around $135 last spring. A low CD-57 means something is suppressing your immune system. They dont know all of what that "something" is yet, its not just lyme that can do this.

Its been said that its not reliable (I say BS)..........probably because Drs dont know how to treat it. Even after some feel better, their CD57 is not always up to par. This might explain Lyme "remission"- as they feel better, but technically are not cured.

Drs in general dont know how to 100% improve an immune system. If they did, AIDS, cancer, Autoimmune diseases, and chronic Lyme would no longer exist. Do doubt some are working on this. Ozone is new, which might be promising.

I suspect more will be known on this subject in the future.

What we do know (and should not be ignored) is gut health is directly related to immune health. Figure out what you body does not like in terms of food. Obviously step #1 is to drop junk food, sugar and regular alcohol use, this includes wine. For some this means certain grains, gluten, eggs or milk products.

And do whatever you need to get sleep (not booze though). If you can sleep, you are ahead of many here.

Post Edited (astroman) : 12/31/2017 6:54:48 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 12/31/2017 10:08 PM (GMT -6)   
Eaglet - your test results show that you have an answer to what's causing your symptoms.

If you need help finding a LLMD - you can start a new thread: "Looking for LLMD in/near______" fill in the blank.

You can also send me an email and I'll check my list and send you some options if I have some.

You can also contact ILADS:

ilads.org/ilads_media/physician-referral/
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 12/31/2017 11:08 PM (GMT -6)   
WalkingbyFaith said...
Eaglet,

I replied to your other post. I'm not an expert on reading lab results, so I'll let others answer to that. I will say if your worst symptoms are weird head symptoms (I saw the more specific descriptions on your other post), then it sounds like babesia may be prominent. Neuroborrelliosis (Lyme) also causes neurological symptoms, but my impression from your statements is more babesia.

I have Lyme, bartonella, babesia, erhlichia. I'm currently treating myself using Stephen Buhner's herbal protocols. I started with the full bartonella protocol, since I thought most of my symptoms were from bartonella, and then added herbs for Lyme, Babesia, and now chlamydia pneumonia, as I have positive IGG and IGM titers.

There are lots of lists around of symptoms, but I have found these for babesia and bartonella to be very helpful.

www.gordonmedical.com/unravelling-complex-chronic-illness/babesia-like-organisms-bablo-consideration-signs-and-symptoms/

www.gordonmedical.com/unravelling-complex-chronic-illness/bartonella-like-organisms-blo-consideration-signs-and-symptoms/


I'm very grateful for your responses, WalkingbyFaith. I read and saved the articles you provided, and I must say they were one of the best explanations I have come across during these years. Honestly. They were very helpful indeed, I recommend everybody to read them right now! They were just what I have been looking for... For more than three years I have been trying to do research on symptoms like feeling of pressure or burning on head, eye soreness, light sensitivity, crawling sensations etc. etc., but I've never found anything that made it seem this clear. No more speculations! Thanks!

The text about Babesia (or BabLO) made me truly understand what might be the main reason behind my most horrible symptoms, the symptoms that have been there since the sudden scary onset of my illness. It's true that Babesia sounds most likely as my head symptoms are more "strange" in nature rather than something that can be clearly described (like a simple headACHE of some type: migraine, tension etc.). Why hasn't anybody told me this before I joined this forum!! Even before I got back my test results indicating cellular activity against Babesia, people here said it sounds like Babesia, but I couldn't truly comprehend it because nobody had told me that before, there had not appeared any article or comment on my way which would have clearly said these symptoms are indicative of Babesia... My original plan was not to test for it because I had understood it causes other types of symptoms (like something that is typical when you're ill). I have only had everything weird none can relate with... a scary lonely prison... symptoms you have no words for... symptoms nobody in your family has experienced...

So according to the article at least these symptoms/signs of mine seem like Babesia: headache (especially behind the eyes), sensation of pressure on/in head without pain (some kind of pain I might feel at times but not in any typical "give me a pain reliever -kind of way"), "little body pain except the wrist/hands and/or ankles/feet" (yes, those are the areas where I experience the clearest pain sensations... which are not very clear either... more like weird things... And I assume my back pains/whole body discomfort to be from quite severe deconditioning...), autonomic nervous system dysfunction of some form, "affects the brain and head; any atypical or exaggerated symptom related to the head must be considered", OCD (but not sure if it is Lyme&co related or just my complicated mind...), "BLO patients are more hot, and can have low grade fevers, as BabLO tend to chill" (usually I am feeling more hot than cold, but I never get fever and my body temperature is always low, as well as my extremities... But yeah, I have both so maybe that's why it's a mix?), "various sensations in the head, hot spots, numbness, crawling--",

However what I don't consider to be very significant symptom in my case is the cognitive dysfunction. Of course I'm not on my best, I'm not me, but the decline isn't very severe. Or maybe I'm just used to being like this...

Also when it comes to those sleep and appetite issues, for me it is the opposite: nowadays I eat and sleep way too much. I guess those are disturbances as well...

According to the article Bartonella then again could explain e.g. the pain in and around my eyes, as well as the weird "skin" sensations I experience always more or less. I don't have typical signs of Bartonella -
like those stretch marks - but the soles of my feet are sore and have been that way for a long time.

Hmm, very interesting. These could explain a lot, hopefully even more than what I can think of now.

Should I try some new herbal protocol now, I would probably start with Babesia.

Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 12/31/2017 11:58 PM (GMT -6)   
dacarte3 said...
I'm with you on the weird joy you get when you have positive results. After 6 months of bad lyme symptoms and my LLMD got my Igenex test and told me in her office, I had a grin from ear to ear.

She was a little surprised but I was happy. Happy to finally know with 100% proof. 6 months in I already highly suspected lyme and was learning to live with it and treating anyways.

It's good to know it's something that isn't "terminal" and you can greatly recover from it. I think that's where a lot of the weird joy comes from.

Unfortunately I don't know how to read these results, I know how to read igenex.

But based on your title you are saying you are positive for everything listed.

So my quick advice:

Make antibiotics a part of your treatment. However don't rely solely on it. Lyme and co is a multisystemic disease. It affects multiple parts of the body which is why it creates a large array of symptoms. ABX kills to a degree but it can't be the only thing you do.

But also don't skip ABX completely either. ABX is a good haymaker punch at lyme but it also takes a more finesse approach to getting your body back to good health.

Research all the different ways you can strengthen and nurse your body back to health beyond just antibacterials (whether it's ABX or antibacterial herbs).

Also during your treatment please take care of your gut where most of your immune system resides. The good bacteria in your gut is a natural "antibiotic" but without the possible negative side affects. It's your best allie.

The rest is just be the healthiest person you can possibly be. So diet, vitamins, detox, sleep, stress management.

If you do all this consistently and for a long enough period of time you WILL significantly get better. Will you ever be at the level of your pre-lyme days? Don't know. Will you ever be 100% symptom free. Maybe not (but maybe so).

But you can definitely get significantly better.

Lastly, have the correct expectations. It may take anywhere from 6 months to multiple years to reach optimal health. Once you have reached a personal "optimal health", be aware that the microbe(s) are still harboring in your system and if you don't take care of your self it can pop back up make you ill once again. So even after you get much better be cognizant of this. And it's your responsibility to fuel your body everyday to try and stay at optimal health.


That's a great summary! Thank you! You're great. Even though I have not got any better despite all these supporting methods that I have been doing for three years, I'm still very glad that I have done it because 1) maybe I'd be a lot worse without it 2) maybe it has prepared my body and mind for the true battle 3) now I am so used to it that it's not difficult to implement it 4) it has increased my understanding about everything and that's useful in Lyme life - and life in general.

These "supporting methods" in my case have mainly been a strict diet from the very beginning (I didn't know about Lyme but I thought I might have an intestinal dysbiosis and/or adrenal problems, possibly mold or parasites... The truth is I knew something terrible happened to me but there were no clear signs supporting any theory so I was in a trap at 18), taking care of gut health and resting, supplements and super foods. Stress management was not easy when everything was collapsing and my life had been hard even before the physical complaints started, but recently, last year or so, I have grown in this matter A LOT. And that might be the most important form of support for me. So yeah, I think now I only lack the actual treatment. : )

I appreciate your views on ABX. That's what I wanted to hear... some concrete opinions. This illness requires serious treatment - whatever that means for each of us. However, I think people who claim to have cured their chronic Lyme disease by diet and supplements alone, didn't really have true Lyme...

And oh yes, I bet you know almost exactly what I mean with that weird joy! Two years ago when I was tested for Borrelia and CD57 for the first time, I experienced a totally different reaction as compared to now. I'm not sure why I was so terrified when I learnt I have a chronic immune suppressive situation going on... I felt hopeless. Maybe I had got the impression from somewhere that these strange, scary, mysterious illnesses are very hard to treat and it's very hard to find help for them... Well, the impression was on point. But back then I was still holding onto this hope that maybe my disorder could be explained by something more simple like a thyroid issue or a neck misalignment and thus it would be over sooner... Back then I couldn't just rejoice, but I think my feelings were affected by the fact that the test result for Borrelia was only borderline and for that matter the diagnosis didn't feel so secure, it only messed up my thoughts even further.

But now I am merely happy to know there is something concrete, there is light at the end of the tunnel, peace exists somewhere, everything can be fine someday... "You can definitely get significantly better." Thank you.

Post Edited (Eaglet) : 1/1/2018 3:38:53 PM (GMT-7)


Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 1/1/2018 12:14 AM (GMT -6)   
astroman said...
"........what does it mean when one's CD57 positive NK-cells HEPARIN (not the absolute count only) is below the range? Also do you think these results are reliable?.."

When cd-57 is mentioned, its usually the absolute count, and yours is low. I have seen another term in place of Heparin, dont recall what it was- depends on what lab does the testing. Ive used two different labs.

Cd-57 alone through LabCorp in the US was around $135 last spring. A low CD-57 means something is suppressing your immune system. They dont know all of what that "something" is yet, its not just lyme that can do this.

Its been said that its not reliable (I say BS)..........probably because Drs dont know how to treat it. Even after some feel better, their CD57 is not always up to par. This might explain Lyme "remission"- as they feel better, but technically are not cured.

Drs in general dont know how to 100% improve an immune system. If they did, AIDS, cancer, Autoimmune diseases, and chronic Lyme would no longer exist. Do doubt some are working on this. Ozone is new, which might be promising.

I suspect more will be known on this subject in the future.

What we do know (and should not be ignored) is gut health is directly related to immune health. Figure out what you body does not like in terms of food. Obviously step #1 is to drop junk food, sugar and regular alcohol use, this includes wine. For some this means certain grains, gluten, eggs or milk products.

And do whatever you need to get sleep (not booze though). If you can sleep, you are ahead of many here.


I agree with everything you say here. Thank you for the input. I wish more was known about the CD57, but I think most important is that there are even some people (doctors) who believe in the value of that test. It may not be specific at all, but if it is capable to prove there is something wrong in the person's body, that already is something. And if someone thinks it has no importance at all, I also think that's BS because there are so many of us who are suffering without answers and then this tests shows lower number than it does in people without any mysterious health issues... there must be a link.

Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 1/1/2018 12:22 AM (GMT -6)   
Girlie said...
Eaglet - your test results show that you have an answer to what's causing your symptoms.

If you need help finding a LLMD - you can start a new thread: "Looking for LLMD in/near______" fill in the blank.

You can also send me an email and I'll check my list and send you some options if I have some.

You can also contact ILADS:

ilads.org/ilads_media/physician-referral/


Hooray!! It felt so good to read that first sentence! Maybe you know what I mean! The times of major doubt are over!

Maybe I'll send you an email, although I don't know if people here are aware of the situation in Europe. I know pretty well what options I do have but I can't decide... I don't know what is right for me... so some advice for the decision making would be great!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 1/1/2018 4:04 AM (GMT -6)   
Eaglet said...
Girlie said...
Eaglet - your test results show that you have an answer to what's causing your symptoms.

If you need help finding a LLMD - you can start a new thread: "Looking for LLMD in/near______" fill in the blank.

You can also send me an email and I'll check my list and send you some options if I have some.

You can also contact ILADS:

ilads.org/ilads_media/physician-referral/


Hooray!! It felt so good to read that first sentence! Maybe you know what I mean! The times of major doubt are over!

Maybe I'll send you an email, although I don't know if people here are aware of the situation in Europe. I know pretty well what options I do have but I can't decide... I don't know what is right for me... so some advice for the decision making would be great!


When I got my positive WB results...after 14 months of h-ll - I was so relieved...when I got home, my husband said "so.....?" I just started sobbing ...... 14 months of pain...despair...anguish...fear...all of it poured out of me...something treatable....what a relief.

Did you email me already? I've been discussing options with someone from Europe...is it you?

If not...please do email me and I'll share the information I have....although sounds like you may already know what options you do have.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 1/1/2018 3:44 PM (GMT -6)   
Eaglet said...
dacarte3 said...
I'm with you on the weird joy you get when you have positive results. After 6 months of bad lyme symptoms and my LLMD got my Igenex test and told me in her office, I had a grin from ear to ear.

She was a little surprised but I was happy. Happy to finally know with 100% proof. 6 months in I already highly suspected lyme and was learning to live with it and treating anyways.

It's good to know it's something that isn't "terminal" and you can greatly recover from it. I think that's where a lot of the weird joy comes from.

Unfortunately I don't know how to read these results, I know how to read igenex.

But based on your title you are saying you are positive for everything listed.

So my quick advice:

Make antibiotics a part of your treatment. However don't rely solely on it. Lyme and co is a multisystemic disease. It affects multiple parts of the body which is why it creates a large array of symptoms. ABX kills to a degree but it can't be the only thing you do.

But also don't skip ABX completely either. ABX is a good haymaker punch at lyme but it also takes a more finesse approach to getting your body back to good health.

Research all the different ways you can strengthen and nurse your body back to health beyond just antibacterials (whether it's ABX or antibacterial herbs).

Also during your treatment please take care of your gut where most of your immune system resides. The good bacteria in your gut is a natural "antibiotic" but without the possible negative side affects. It's your best allie.

The rest is just be the healthiest person you can possibly be. So diet, vitamins, detox, sleep, stress management.

If you do all this consistently and for a long enough period of time you WILL significantly get better. Will you ever be at the level of your pre-lyme days? Don't know. Will you ever be 100% symptom free. Maybe not (but maybe so).

But you can definitely get significantly better.

Lastly, have the correct expectations. It may take anywhere from 6 months to multiple years to reach optimal health. Once you have reached a personal "optimal health", be aware that the microbe(s) are still harboring in your system and if you don't take care of your self it can pop back up make you ill once again. So even after you get much better be cognizant of this. And it's your responsibility to fuel your body everyday to try and stay at optimal health.



These "supporting methods" in my case have mainly been a strict diet from the very beginning (I didn't know about Lyme but I thought I might have an intestinal dysbiosis and/or adrenal problems, possibly mold or parasites... The truth is I knew something terrible happened to me but there were no clear signs supporting any theory so I was in a trap at 18), taking care of gut health and resting, supplements and super foods. Stress management was not easy when everything was collapsing and my life had been hard even before the physical complaints started, but recently, last year or so, I have grown in this matter A LOT. And that might be the most important form of support for me. So yeah, I think now I only lack the actual treatment. : )

I appreciate your views on ABX. That's what I wanted to hear... some concrete opinions. This illness requires serious treatment - whatever that means for each of us. However, I think people who claim to have cured their chronic Lyme disease by diet and supplements alone, didn't really have true Lyme...


You shouldn't be on a "strict diet" you should be on a "correct" diet for you and your microbiology.

Also I see you didn't mention supportive herbs. That's more of what I meant not simply vitamins supplements.

There's herbs that boost the immune system, help protect various organs, helps with cellular health, helps the cardiovascular system, circulatory system, helps protect your brain, helps detox, helps with sleep, helps with stress, and even target specific symptoms.

Perhaps this is something you have been missing? Supportive herbals?
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 1/1/2018 5:13 PM (GMT -6)   
dacarte3 said...
You shouldn't be on a "strict diet" you should be on a "correct" diet for you and your microbiology.

Also I see you didn't mention supportive herbs. That's more of what I meant not simply vitamins supplements.

There's herbs that boost the immune system, help protect various organs, helps with cellular health, helps the cardiovascular system, circulatory system, helps protect your brain, helps detox, helps with sleep, helps with stress, and even target specific symptoms.

Perhaps this is something you have been missing? Supportive herbals?


Well, perhaps "strict" was not a correct word to use (English is not my mother tongue as you can see), what I meant was more like "correct diet", but yes, maybe it is not correct for ME, how can I know? I guess I should have some food sensitivity test done, but I have already had so many more or less necessary tests done so I don't know if I really should do that... By strict I mean I have not ingested anything that is obviously unhealthy like processed sugars, gluten, additives and junk food. I was completely sugar free (not even berries) for two years because I didn't want to feed any bad organisms... I was also completely grain free, now I allow organic oats and such sometimes, also occasional fruits because I didn't get any better by the strict restriction... So yeah, I'm doing what I think could be correct but I'm not sure because I don't react to anything so strongly so that I could make any clear claims.

I have been using some supportive herbals, but I wish I could do it in a more targeted way. I have used herbs/supplements for the immune system, e.g. colostrum and chaga, I've tried CoQ10 but not for very long time, I've tried ALA and ALC, fish oil, things for detox, among others chlorella, I've tried some adaptogenic herbs: ashwagandha, tulsi... but there are too much things that are messed up in my system so those trials have not been of any help. Now I am trying out phosphatidylserine, as my cortisol levels are high in tests, but I have not ruled out the possibility of my cortisol being low on a cellular level... because PS100 intensified my fatigue quite severely. Or that might be the reason... I don't know.

Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 1/1/2018 5:54 PM (GMT -6)   
Girlie said...
When I got my positive WB results...after 14 months of h-ll - I was so relieved...when I got home, my husband said "so.....?" I just started sobbing ...... 14 months of pain...despair...anguish...fear...all of it poured out of me...something treatable....what a relief.

Did you email me already? I've been discussing options with someone from Europe...is it you?

If not...please do email me and I'll share the information I have....although sounds like you may already know what options you do have.


Yes, that's how it seems to go for us! It's unbelievably crazy what we go through.

I emailed you just know, not yet before. Let's see if I get some new ideas...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 1/1/2018 6:08 PM (GMT -6)   
Eaglet said...
Girlie said...
When I got my positive WB results...after 14 months of h-ll - I was so relieved...when I got home, my husband said "so.....?" I just started sobbing ...... 14 months of pain...despair...anguish...fear...all of it poured out of me...something treatable....what a relief.

Did you email me already? I've been discussing options with someone from Europe...is it you?

If not...please do email me and I'll share the information I have....although sounds like you may already know what options you do have.


Yes, that's how it seems to go for us! It's unbelievably crazy what we go through.

I emailed you just know, not yet before. Let's see if I get some new ideas...


Okay - I will get at my emails a little later on...so please be patient...I may not get to your's until later this evening..BUT I will email you.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 1/1/2018 6:46 PM (GMT -6)   
Girlie said...
Okay - I will get at my emails a little later on...so please be patient...I may not get to your's until later this evening..BUT I will email you.


Sounds good! But you don't need to hurry - I'm too fatigued to do anything right now anyway. But soon I have to decide... so yes, I'll be waiting for your thoughts.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 1/1/2018 6:49 PM (GMT -6)   
Eaglet said...
dacarte3 said...
You shouldn't be on a "strict diet" you should be on a "correct" diet for you and your microbiology.

Also I see you didn't mention supportive herbs. That's more of what I meant not simply vitamins supplements.

There's herbs that boost the immune system, help protect various organs, helps with cellular health, helps the cardiovascular system, circulatory system, helps protect your brain, helps detox, helps with sleep, helps with stress, and even target specific symptoms.

Perhaps this is something you have been missing? Supportive herbals?


Well, perhaps "strict" was not a correct word to use (English is not my mother tongue as you can see), what I meant was more like "correct diet", but yes, maybe it is not correct for ME, how can I know? I guess I should have some food sensitivity test done, but I have already had so many more or less necessary tests done so I don't know if I really should do that... By strict I mean I have not ingested anything that is obviously unhealthy like processed sugars, gluten, additives and junk food. I was completely sugar free (not even berries) for two years because I didn't want to feed any bad organisms... I was also completely grain free, now I allow organic oats and such sometimes, also occasional fruits because I didn't get any better by the strict restriction... So yeah, I'm doing what I think could be correct but I'm not sure because I don't react to anything so strongly so that I could make any clear claims.

I have been using some supportive herbals, but I wish I could do it in a more targeted way. I have used herbs/supplements for the immune system, e.g. colostrum and chaga, I've tried CoQ10 but not for very long time, I've tried ALA and ALC, fish oil, things for detox, among others chlorella, I've tried some adaptogenic herbs: ashwagandha, tulsi... but there are too much things that are messed up in my system so those trials have not been of any help. Now I am trying out phosphatidylserine, as my cortisol levels are high in tests, but I have not ruled out the possibility of my cortisol being low on a cellular level... because PS100 intensified my fatigue quite severely. Or that might be the reason... I don't know.


Chaga is good. I drink chaga tea everyday.

Are you taking any Buhner herbs? Not to say there aren't other very effective and helpful herbs out there but there is a reason why Buhner is heralded in the lyme community. Because he has decades of research on herb specific to lyme and what lyme does to our bodies.

So it's more "targeted" as you put it then overall general herbs.

That would be my recommendation.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 1/1/2018 7:00 PM (GMT -6)   
WalkingbyFaith said...
dacarte,

That is such a great response. I need to print that for myself. Thanks, Buddy🙂


You are welcome. It's true because I've put lyme into 90%+ remission twice. And I'm not special. Just an average joe that made it my mission to not let lyme destroy my life.

This time I'm going to practice what I preach and not go back to my old ways that made me relapse the first time.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Eaglet
Regular Member


Date Joined Nov 2017
Total Posts : 44
   Posted 1/1/2018 7:57 PM (GMT -6)   
dacarte3 said...
Chaga is good. I drink chaga tea everyday.

Are you taking any Buhner herbs? Not to say there aren't other very effective and helpful herbs out there but there is a reason why Buhner is heralded in the lyme community. Because he has decades of research on herb specific to lyme and what lyme does to our bodies.

So it's more "targeted" as you put it then overall general herbs.

That would be my recommendation.


Buhner might be my next step, so many people are suggesting that one. Especially the Babesia protocol. My symptoms seem like Babesia and some Lyme specialist thinks Babesia needs to be addressed before the others.

I have not had positive reactions with Nutramedix herbs, but my trials have not been very long so maybe I shouldn't comment on them... I found the Cowden protocol (which I tried for approx. two months + some individual herbs later on) to be quite inconvenient. It stressed me out a lot.
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