What infections would you test for if your case was like this?

EDIT: Please check out the update post (31st of December), just scroll down the thread a little bit... The answers I got might interest someone with similar issues.

Hello everybody! Tomorrow is my fourth birthday with Lyme (or whatever this mess is). As a 22nd birthday gift I'm treating myself to going to get some blood drawn once again on Monday so that I can send it over to Germany and hopefully get some clear results back. Last and first time I tested was in early 2016. My CD57 count was low (62) and Borrelia Elispot borderline. Then there have been some other indirect markers that make chronic infection seem likely, but nothing too clear so far and that has been torture to say the least. I guess you know what I mean.

Now I really want to know what's going on and that's why I'm going to take more tests than I did before, I'm just not sure which ones I'd better take...

So: What infections would you test for if...

...it seemed like some pathogen got reactivated in your body by a longish course of antibiotics (minocycline) and/or severe stress? (= sudden, dramatic onset but really weird one, no typical symptoms of an acute infection and nothing that could be detected at the ER)

...your main symptoms were neurological, nothing so called severe but something as annoying as can be? Most importantly:

- feeling of pressure in head
- burning pain on head
- eye discomfort (light sensitivity, achiness, just not feeling right)
- chronic almost disabling fatigue (which started later than the head symptoms)
- unrefreshing sleep and food
- intense ear ringing, noise sensitivity and hyperacusis (started one year ago)
- ear pain and some other strange sensations, e.g. in the bridge of nose
- feeling intoxicated/poisoned/weird/bad etc.

(Everything is there 24/7, however some symptoms can intensify sometimes, e.g. after walking outside or after eating or after shower... or after just standing there... scary stuff...)

...at the beginning of your illness (or at some point) you experienced strong paresthesias, particularly horrible crawling and stabbing sensations all over?

...you have tried pretty much everything you can by yourself and nothing has brought you relief at all? (Just to name a few: diets, supplements: herbs, vitamins, minerals etc., physiotherapy, rest, acupuncture, t-VNS, LDN, T3, T4, small dose hydrocortisone, one time IV saline, colon hydrotherapy, rectal and ear ozone insufflations...)

...you have quite high IgG antibodies for CMV and Mycoplasma? Ch. pne. antibodies not risen. EBV antibodies negative (IgG and IgM).

...ten years ago you were hospitalized due to facial paralysis and other severe symptoms like massive head and neck pain and drowsiness? (...which eventually were found out to be caused by a reactivation of VZV, the chicken pox virus... But what made the VZV reactivate is what I wonder... It was a warm spring day... We had been gardening one or two days before... VZV should not reactivate in children unless something happens that suppresses the IS...)

...in a live blood analysis you could see creatures that look and move like spirochetes?

...your condition seemed to worsen no matter how much you have tried to solve it? Again no symptoms that can be detected in tests, just everything fricking weird that's hard to understand if you have not experienced it by yourself...

I hope someone can help me by sharing some insights... The desicion wouldn't be so difficult then. I've been thinking about testing for Borrelia again as it was borderline previously, CD57 again as it might give me confidence to look further, then Bartonella as the soles of my feet are sore and I have these hypersensitivity symptoms... Can Bartonella cause burning on head? Eye discomfort? Anxiety definitely yes? Then maybe CMV as the IgG was quite high and I just have this feeling that it might be a virus that's bothering me the most... Maybe Mycoplasma because the IgG was high... And I've got this fatigue (and a diagnosis of CFS of course). What do you think? Should I consider Babesia or some other viruses? What does this sound like?

Have a day everybody. May God help us all.

Post Edited (Eaglet) : 12/31/2017 4:58:43 PM (GMT-7)

Hi Eaglet and welcome to our forum,

Well Happy Birthday and yes why not treat yourself to some blood work. Just remember testing can be unreliable. Lyme and co can be clinically diagnosed.

Lyme, Bartonella and Babesia all come to mind when I read your post about your symptoms.

Others may be able to help with input on other infections that could possibly be going on too.

Im very sorry that you have been going through all of this, keep building up your immune system and detoxing.


We do encourage all new members to read our new to Lyme start here thread at the top of the page.

It has lots of information on detoxing, symptoms, testing and more.

Take care and others will be along soon, Jo

goshawk said...
Hi Eaglet and welcome to our forum,

Well Happy Birthday and yes why not treat yourself to some blood work. Just remember testing can be unreliable. Lyme and co can be clinically diagnosed.

Lyme, Bartonella and Babesia all come to mind when I read your post about your symptoms.

Others may be able to help with input on other infections that could possibly be going on too.

Im very sorry that you have been going through all of this, keep building up your immune system and detoxing.


We do encourage all new members to read our new to Lyme start here thread at the top of the page.

It has lots of information on detoxing, symptoms, testing and more.

Take care and others will be along soon, Jo

Thank you!

So maybe I should test for Babesia as both of you think it sounds likely... If there's a third person thinking the same, please tell me! Here in the North of Europe we have a saying: "Third time reveals the truth."

about detoxing: it's so hard with non-existent energy, but recently I started dry brushing. Nothing makes me feel better, but at this point I'd be so happy if I could just make the pathogens show up on the tests!

Most of it sounds like Lyme, Bartonella, and Babesia.

Also, I believe mycoplasma can definitely cause the disabling fatigue.

Not sure how the facial paralysis, head and neck pain were linked to varicella virus unless doctors tested you then for the virus but not for Lyme, or they tested for Lyme and it came back negative. Those symptoms are highly indicative of Lyme.

As someone else said, testing for Lyme, bartonella, and babesia is not that great and you can get negative results even if you have them all. If you want to test again, go ahead. I would also get retested for the other infections like CMV, mycoplasma, chlamydia, EBV, the herpes virus family, etc, as the status may have changed. A suppressed immune system is what allows those to reactivate, so as long as your immune system is suppressed, it could change at any time.

You mentioned lots of things you've already done, including herbs. Did you do a particular herbal protocol for a long period of time?

WalkingbyFaith said...
Most of it sounds like Lyme, Bartonella, and Babesia.

Also, I believe mycoplasma can definitely cause the disabling fatigue.

Not sure how the facial paralysis, head and neck pain were linked to varicella virus unless doctors tested you then for the virus but not for Lyme, or they tested for Lyme and it came back negative. Those symptoms are highly indicative of Lyme.

As someone else said, testing for Lyme, bartonella, and babesia is not that great and you can get negative results even if you have them all. If you want to test again, go ahead. I would also get retested for the other infections like CMV, mycoplasma, chlamydia, EBV, the herpes virus family, etc, as the status may have changed. A suppressed immune system is what allows those to reactivate, so as long as your immune system is suppressed, it could change at any time.

You mentioned lots of things you've already done, including herbs. Did you do a particular herbal protocol for a long period of time?

Thank you for the reply! Yes, I do know testing for these infections is very unreliable, but I just don't know what else I could do at this point...? Somehow I just need to know... I really wish to know if this is the path I should follow... I want to be a able to call myself "a lymie" with confidence, not with hesitation and doubt. But well... I guess that's what Lyme is: hesitation and doubt. *sigh*

Back in 2007 (facial paralysis etc.) they first suspected Lyme, but as we know, the standard tests leave a lot to be desired. At least they did B.b. PCR from CSF, but because it came back negative (as it almost always comes no matter what), they discontinued the ab and found active VZV instead from my CSF. The official DG was Ramsay Hunt Syndrome, rare among children. There must have been something that suppressed my immune system, right? Because normally the IS keeps VZV in check.

about herbs: I have not followed any protocol for a long time, however I did try the Cowden protocol for about two months . I discontinued because that's when the disabling fatigue/feeling of weakness really kicked in (I also tried LDN and T3 back then so don't know which is what), and I felt very discouraged as someone who sold me the herbs said that I should have felt something during the first month in order for me to have Lyme. But I didn't.

And of course some individual products have been used... mainly for gut health. Just in case.

Do you think the low CD57 count tells something? There are so much different opinions on that one. But that's my only hope...

If you don't get a positive test that still doesn't mean you don't have lyme or co-infections as testing is highly unreliable.

It won't kill you to try a few herbs and see if you get a response. For babesia a good combination is Cryptolepis, Sida Acuta and Artemisinin (capsule form). These are the core herbs in Dr. Buhner's Babesia Protocol. Do this for a few weeks and see how you feel. Most likely if you have babesia you'll react pretty quickly probably in the first few days of starting the protocol.

Unfortunately given the inconsistencies with testing and lack of enough doctors with knowledge on identifying and treating tick borne infections we're sometimes forced to go it alone to figure out what may be ailing us. I was lucky to get a positive through Igenex lab testing but if I didn't I probably would've tried a few herbal combos to gauge response.

Rikky1 said...
If you don't get a positive test that still doesn't mean you don't have lyme or co-infections as testing is highly unreliable.

It won't kill you to try a few herbs and see if you get a response. For babesia a good combination is Cryptolepis, Sida Acuta and Artemisinin (capsule form). These are the core herbs in Dr. Buhner's Babesia Protocol. Do this for a few weeks and see how you feel. Most likely if you have babesia you'll react pretty quickly probably in the first few days of starting the protocol.

Unfortunately given the inconsistencies with testing and lack of enough doctors with knowledge on identifying and treating tick borne infections we're sometimes forced to go it alone to figure out what may be ailing us. I was lucky to get a positive through Igenex lab testing but if I didn't I probably would've tried a few herbal combos to gauge response.

I might really follow this advice, thank you! But first I want to check if the CD57 count is still supressed and if I get a positive result from some of the Elispot tests (then I wouldn't be so afraid and clueless). Yes or no, I will try some Buhner herbs anyway. Nutramedix herbs were not very convenient in my opinion, but Buhner's herbs are mainly capsules right?

But what if I don't react...? Does it mean I don't have chronic infections or is it just something else that I need?

So you didn't have these symptoms prior to taking the minocycline?

I know my head pressure isn't mino-induced - mine is from the infections.

I think a Babesia protocol is a good idea .

Girlie said...
So you didn't have these symptoms prior to taking the minocycline?

I know my head pressure isn't mino-induced - mine is from the infections.

I think a Babesia protocol is a good idea .

Yes, these symptoms started after I had taken mino for about three weeks (I was abroad and very frustrated with some colorless little itchy bumps on my forehead). However I'm not convinced that this is all due to the mino because to be honest my life was a mess already before this happened. I suffered from OCD/anxiety and that among other things put a GREAT stress on me – both physical and emotional/phychological. I have understood that such life situations may wreak havoc on the immune system and thus make way for all those dormant infections... And as a cherry on top comes some broad spectrum antibiotics which also compromise the immune system... There is a great chance for B and co. to go wild. Or what do others think? Maybe this is just wishful thinking...

Could you describe your head pressure in more detail? Do you have it accompanied by some sort of "intoxicated feeling"?

And yep, I will go that Babesia route. It's concrete advice. Just gotta collect some strenght to find out how to order etc...

Hello everybody once again and happy new year. I will try to make a separate post soon, but in case someone comes across this thread sooner or later, I want to update things a little bit.

These are good news. In a sense.

It took only a few days to receive the test results and it seems that you guys were right. I indeed do have Babesia. Elispot showed a strong positive reaction, clear cellular activity, against Babesia. I don't know how much it matters or does it matter at all how great the number is, I think it can change from time to time and doesn't always correlate with the suffering (The Lyme Paradox), but I'm very very happy that this time the numbers were really high. Babesia was +18.

Well, it's not only that. I also tested clearly positive for Borrelia in the LymeSpot Revised test. I was crying and laughing at the same time when I reviewed the document and saw number 9!!! Two years ago it was 2 which is borderline and thus it could't bring me confidence. But now thank God I got it!! +9!! And LymeSpot Revised being a test that tries to find out if the disease is still in its infectious state or rather in its inflammatory/autoimmune phase, it told me that the infection is still active and an antimicrobial treatment could be beneficial. The autoimmune part showed a borderline result (2).

You also said this sounds like Bartonella... and that's what I seem to have aswell. Elispot was able to detect lots of cellular activity against Bartonella henselae. +28 was the exact number this time. Yikes.

Then Mycoplasma +30.

Cytomegalovirus +6 (what did I say doctors!!).

CD57 count has dropped to 38.

CD57 positive NK-cells heparin were below the range. I don't know what it means and if it is important at all but maybe worth mentioning...

Some little faults in basic clinical chemistry (e.g. lymphocytes higher than what's desired).

I tested clearly positive for everything that I tested for. So it wasn't in vain. Now I feel much more confident about this all. I still don't know what I should do next, what is the right path, I'm not sure, but I ask you to pray for guidance. I wonder what other infections I might have... I didn't test for Chlamydia ph., EBV, Erlichia etc., because they didn't seem so likely in my opinion. But who knows... Maybe it's not relevant... Now I know for sure (?) I have multiple infections, not only bacteria but also viruses and parasites... Maybe I don't need to know everyone of them by name because the treatment must be so broad spectrum anyway... Or what do you think?

It would be so nice to know which infection is responsible for these symptoms... Do you think a LLMD will be able to figure this out somehow? I have to go abroad and ask for money but I am ready. Let the war begin!! Let the new year begin!!

Yeast and mold can cause the drunk feeling too. I used to have it a lot prior to my more prominent neuro sx. When we stay at our cottage on water (with mold) i always wake up feeling like i have a bit of a hangover.

The problem is the symptoms overlap so much. Testing for all 3 b’s, yeast, possibly some mold indicators (see survivingmold.com lab tests), and mycoplasmas would be a decent start. Also consider heavy metals (any amalgams?).

Hi Eaglet,
Thanks for the update.

I completely understand how you felt when you were give the results...while it is such a relief to finally find out some of what you are dealing with... it can also be scary and overwhelming.

Some of the treatments do over lap for the co infections but an llmd should be able to guide you in this matter.

Also many symptoms overlap between the different infections but there are some symptoms that are specific to each infection, for example:
Bartonella: sore soles of feet, Skin issues and marks, neuro symptoms.

Well I'm glad you are on your way to finding treatment and I wish you the best of healing, Jo

Happy New years to you!!!

Eaglet said...

I tested clearly positive for everything that I tested for. So it wasn't in vain. Now I feel much more confident about this all. I still don't know what I should do next, what is the right path, I'm not sure, but I ask you to pray for guidance. . . .It would be so nice to know which infection is responsible for these symptoms... Do you think a LLMD will be able to figure this out somehow? I have to go abroad and ask for money but I am ready. Let the war begin!! Let the new year begin!!

Eaglet,

I'm so happy you got positive test results. I know how important that can be to us mentally and emotionally when we just really need to know we're on the right path as far as identifying the cause(s) of illness. I do believe the symptoms you named are caused by Lyme, babesia, and bartonella, and the fatigue is likely from mycoplasma. Most of us with chronic Lyme have other infections too. I personally don't think it's necessary to identify and treat each of those viruses and bacteria separately. How active they are is dependent on the state of your immune system. If you take care of the immune system and treat the Lyme, babesia, and bartonella, the other infections, whatever they are, will most likely be reigned in.

While an LLMD may be very helpful, you should be aware that they will most likely treat you with long term antibiotics. If that is something you are not comfortable with, cannot afford, or cannot tolerate due to herx reactions, then herbal protocols are a viable alternative. You mentioned you did Cowden's for two months. Stephen Buhner also has protocols for all the infections. He has books that are very informative and helpful if you are interested. Also, many folks use herbs along with antibiotics.

I am praying for you that God will guide you in the right direction and that you will have peace when you consider your options and start choosing what to do next.

Others mentioned mold and metals (amalgam fillings). Do check your environment at home and work or wherever you spend a lot of time and make sure you're not being exposed to mold, as it will keep your immune system suppressed and could render treatment ineffective. www.survivingmold.com has the mold information.

Knowing what you're dealing with and educating yourself are the first steps, so you're already on your way to healing!! We'll be here to help and support you. God bless you, Eaglet!