New here and in a bad relapse.Please help. mpost ?

To the whole community of patients,
I am a lyme patient from Eastern Europe,female, age 41, with really bad sypthoms starting in january 2014.
Have been bitten by a known tick in 1980.
Had health issues very bad that came and have gone, and then long periods of good health.For example anaphylactic shock of unknown origin then appendix removal after periodic fevers for aprox. 6 months at the age of16, at 23 bursted ovarian cyst with intraperitoneal haemorrhage and the same year extreme case of mono with elevated over enzymes to 300-400 and bedridden for 1 month.Depressive and insomniac after giving birth, treated by psychiatrist, eventually completely resolved.Many pneumonias, synus infections, gallbladder infections during the last couple of years.In spite of theses moments I finished University and am an obstetrician-gynecologist and co-own a private practice, had a very fulfilling life with my family, holidays, skiing, pilates, etc.
I have been treated by an LLMD in my country with a combination of multiple antibiotics, herbals, supplements and antivirals for 9 months, adding 6 days of HBOT at the end of treatment, I would say with excellent results, only a few minor symptoms left: Fasciculations and some areas in my feet with mild buzzing.The general feeling of being sick was completely gone, good stamina, etc., but cd57 was 43.
After 2 colds in march and april I started having sympthoms(some pain in the lateral of my ribs, little fatigue, got swollen in hans and feet, slowly air hunger) than one day I started seeing funny, hearing in an odd way,spinning.Did again cd57 and it got 16!!!!! Started Abx. right away (Mino, Azith., and herbs) and got a cold in 10 days that left me almost bedridden, lost 7 kg. in 4 weeks and got my period 3x in 40 days.Maybe my whole HTPA axis crashed?!).I can only go out for my 2 part-time jobs and help my daughter a bit.Continued with another 2 schemes of antibiotics that got me even worse-had symptoms like an Alzheimer patient.
Finally stopped Abx. for a month got a bit better and then worse again.Started a condensed Cowden protocoll on wich I feel slightly better, not the constant feeling of dying and now have an appointment in a clinic in Germany .
I am very scared of the possibility that I can never get back to almost normal-functional again, and can not be a proper mom, wife, doctor like I used to be.I am crying my heart out.
Any input would be nice, as you folks have a lot of experience with these things.
Thank you for reading this.
Coinfections:bartonela, chlamydia pn., EBV , coxackie and lot of the herpes viruses.

PS. mpost, as I think we are from the same country, you seem very savvy and experienced with this illness and I think you are treated in Germany as well,if you could share some info I would be grateful.

Post Edited By Moderator (Traveler) : 12/30/2015 10:13:51 AM (GMT-7)

Hi Finisului, and welcome to the forum :) I am sorry to read about what you have been through and are going through, but please know that you are not alone, and that you WILL get better!!

It sounds like you made some remarkable progress with this before, and you will do again. Many people here have been infected for many years and recovered; Traveler one of the forum moderators was sick for 40 years and has healed.

Can I direct you to the 'new to Lyme' sticky thread at the top of the posts page, if you haven't already read it. It has some excellent information in it that you will find useful.

Can I ask - did your LLMD recommend that you continue to treat for 2 months after all your symptoms have gone? it sounds like you may have stopped treatment to early? Do you have an LLMD now?

It may be a good idea to start a post and put 'mpostelnicu' in the title, so that you can be sure they see you have a question for them if they don't answer here.

Many people here take herbal protocols (some with antibiotics, others only herbs), so if you have any questions at all folks here will be happy to help you out :)

Hang on in there, keep asking questions, and do not give up!! We are all here for each other and in this together!!

To be honest a lot of it depends on the testing procedure and how good the Lab is aswell as other factors like what abx you have been taking, how long you have had it etc, etc. If your first WB was positive you know for sure you have Lyme. Was the first test at a different lab?

And detox is vital, that's for sure!! That can be an issue with the MTHFR mutation, so you don't want to rush into any aggressive treatment that is going to overload you body with toxins.

Personally I wouldn't rely too much on the WB results, but I am certain someone here will know more about how it might relate to immunosuppression and will be able to help you more with that question.

There is also some debate about what a low cd57 count indicates - I have read how a low count indicates a likelyhood of relapse, but also that it is not a reliable indicator, so I am not certain. Again, there will be folks here who know much more than me, so just hold that thought :)

You said that you got a cold, which will have meant that your immune system was busy fighting that and could be why your Lyme symptoms came back with such force?

Certainly you need to be treating until after your symotoms have completelt resolved this time, to be sure you are healed.

finisului17 said...
Unfortunately silly sheep I still had slight symptoms when I stopped treating.Probably this is why I relapsed so badly.The last 2 LLMd s told me it was impossible to relapse as badly, they can not understand what happened.I wanted to ask if the negative WB with symptoms still occurring is not a sign of very bad immunosuppression? Also very low cd 57?

Hi Finisuliui,
I welcomed you on the first thread you posted in, I believe, if not, I apologize!

It's pretty obvious that those two doctors that claimed to be LLMD's, didn't know what they were talking about with relapsing from these infections - but technically, you didn't relapse, you just never got enough treatment since you were left with symptoms. You can only relapse if you were healed in the first place and with Lyme disease there's no way of knowing if it's a relapse or if it's a reinfection to be honest, unless the person is in the situation I found myself in - healing from multiple tick-borne infections, then after completely symptom resolution, I started having Lyme symptoms again not long after having a tick attach once again. I was reinfected.

Lyme disease itself lowers our immune function, so a lowered immunity is part of the infection.

The CD57 isn't a reliable test for much as of yet. No one knows what all makes it low, and some with very severe Lyme symptoms have had very high CD57 results and some with very minor Lyme symptoms have very low CD57 results. All we know at this point is that for some people it can be helpful in identifying chronic Lyme.

And you will see that we talk about detoxing a LOT here! That's because it's critical for most of us to do all we can to help our bodies detox in order to recover. There are many reasons why our bodies might not be doing well at detoxing, but usually, it's because they are just overwhelmed by the amount of toxins that our bodies are required to process out while we are dealing with these infections. The Lyme bacteria releases toxins as it dies, whether from treatments or on it's own.

Considering you have identified air hunger as one of your symptoms, I would like to suggest that you also have Babesia, as the blood must be very full of these protozoans before testing will be positive.

If you would like to try finding another LLMD, hopefully one with more/better training, you can send me an email with your location (nearest city and country), and I'll take a look and see what options you might have from the list the Mods have.

Above all, welcome!! And please keep asking questions!!

I had three WB's done - one before I started treatment, showing only Band 41 as reactive, then two were done after my treatment failure with abx - one in 2007 by the LLMD and one in 2008 by a GP that finally agreed to pick me up as a patient. Both of those were fully CDC positive for Lyme and RMSF, but that was all.

My LLMD gave me the worst news of my life the day of my first appt with him. After looking over my symptom lists, and evaluating me, he told me that I likely had every single one of the tick-borne infections due to the number of symptoms and the severity of them. I sat there with my mouth literally hanging open, speechless. He also told me an important bit of information - I likely would never test positive for the majority of my infections due to immune suppression. So I have never relied on testing, but on symptoms.

When I started herbal treatments, I was doubtful that I had so many of the infections, it wasn't until I started lowering the pathogen load on my body that I started having symptoms of oh so many of the infections!! My first real taste of air hunger and those lovely drenching sweats (while doing absolutely nothing!) didn't come until I had treated Lyme for about 6 months and Bartonella for 3 months. But along with those symptoms came a whole host of other symptoms as well!

When I was reinfected in 2014, I didn't bother with testing. I knew how faulty it was not only because of their reliance on the immune function, but even with the best of tests, the blood has to have a LOT of the bacteria/protozoa contained in that sample, so false negatives are always a possibility. I chose to treat first and see what symptoms presented themselves as I went along. Not something I would really recommend if you can avoid it, as it's a bit nerve wracking - but it worked! I found out I only had been reinfected with Lyme and nothing else. I no longer have any active symptoms of these infections!

For Babesia not only is air hunger a classic sign of it, but you can also see other 'issues' on things like the CBC blood work. Babesia destroys red blood cells, and I've had low RBC counts for no known reason (of course they weren't looking for tick-borne infections though!), as well as elevated WBC and I've had both of them below range as well (showing that while something was attacking my RBC's, there was no immune reaction to indicate an infection to those that didn't know any better - including me at the time).

Babesia is notoriously hard to diagnose due only needing a very small number of protozoa to cause illness, but it requires a very large number of protozoa in the blood to be seen or detected by these tests.

"Dr. Peter J. Krause, a Yale researcher specializing in tick-borne diseases suggested that labs examine 300 microscopic fields before ruling out the disease." - well.blogs.nytimes.com/2012/07/30/another-tick-borne-disease-to-guard-against/?_r=0

"Both thick and thin films should be screened manually, since automated hematology analyzers may fail to detect Plasmodium and Babesia species parasites. The slides should first be screened at low power (100 times final magnification) for identification of larger microfilariae, followed by examination under oil immersion. The laboratorian should examine a minimum of 300 microscopic fields at 500 to 1000 times total magnification on the thick and thin films before reporting a specimen as negative."
cid.oxfordjournals.org/content/early/2013/06/24/cid.cit278.full

** Sorry!! I decided to allow myself a shot of real coffee in my fake coffee - maybe that wasn't such a good idea??? But boy it tasted soooo much better!! LOL!

Ha ha ha, yes, sorry about so much writing! I'm back down now off my little caffeine high. I won't be doing that again until my adrenals are healed!

I would encourage you to start detoxing more. It's the one thing that as long as we start off slow and build up slowly, we can do a lot of and it will help us feel better. Of course if you have the gene mutations that make it difficult for your body to detox, it can be hard until you know which gene mutations you have and address them.

This big ball of a mess that we are in when we have these infections can be unraveled though! Think of it as an onion - layer by layer has to be pealed away to get to the core (the real you) - the kicker is that these layers can change place with each other*, and although it makes things more difficult, it doesn't make it impossible to get past each layer.

*as we treat each of our infections, the one with the highest bacterial load in the body will present with the most symptoms usually.

An overwhelming feeling of ill health makes me think of multiple infections with an impaired ability to detox, as that's what my experience was.

Keep reading and asking questions!! We can help you find the information you need hopefully!

Yes I am Mossotti. I heard you take a herbal protocol, May I ask what exactly?I am not familiar only partially with 2: Cowden and Buhner. Do you have a doctor or doing it by yourself?

Oh Mossotti I thought you were at home and found an llnd!

MPostelnicu, hello!

Can we communicate with each other?

thank you!

finisului17 said...
mpost, hello!

Can we communicate with each other?

thank you!

Hi,

Sorry i had a few busy days and haven't been checking the forum. When you need to send a private message directly to someone on the forum, by email, you can click the envelope below their nickname. Since you seem to also have the email enabled, i will send you a private email with more info about my treatment.

finisului17 said...

The general feeling of being sick was completely gone, good stamina, etc., but cd57 was 43.
thank you!

In my opinion you should not have stopped all treatment with a CD57 so low. Some people do fine with a low CD57 but the majority will relapse. At the very least you should continue taking some herbs to stimulate your immune system for several more months, or i should dare say ... indefinitely ? Buhner recommends that even after all symptoms are gone for several months, at the very least you should continue taking a low dose (3x500mg/day) of cat's claw bark and (3x500mg/day) Japanese Knotweed bark.

People relapse because there is no way to completely remove the spirochete, once it has spread to parts of your body with fewer blood vessels, like joints, or places where the immune system cannot act with full power (brain, eye). The bacteria also has a very long life cycle, so you can be well for weeks while the bacteria is in an inactive form, that are immune to antibiotics, then it will reactivate and if you dont take any antibacterial/herbs when that happens, you will relapse.
aac.asm.org/content/early/2015/05/20/AAC.00864-15.abstract

finisului17 said...

Maybe my whole HTPA axis crashed

Well one thing with HTPA that it really helped me was Ashwagandha, it helps the adrenals, lowers cortisol spikes, Buhner recommends taking one before bedtime to prevent the cortisol spike in the middle of the night that gets us wake up at 2-3am. I used to wake up at that hour all the time and was not able to fall back to sleep.
This effect is well documented www.ncbi.nlm.nih.gov/pubmed/23439798

finisului17 said...

I am very scared of the possibility that I can never get back to almost normal-functional again, and can not be a proper mom, wife, doctor like I used to be.I am crying my heart out.

Well unless you have heart damage, i'd say most of the other symptoms (at least for me and for many others on these forums) are fully reversible. The collagen in your gut and especially joints will take years to recover.

finisului17 said...

Any input would be nice, as you folks have a lot of experience with these things.
Thank you for reading this.
Coinfections:bartonela, chlamydia pn., EBV , coxackie and lot of the herpes viruses.

Of course you have all these coinfections, there is nobody on this forum that has only Borrelia. I have all the coinfections you listed above plus a few more, the German clinic that is treating me has found at least 8 life forms that have reproduced out of control. All the coinfections you listed are usually not a problem, maybe with the exception of Bartonella. But almost everybody on the planet has EBV, Coxackie (childhood virus), CMV (90% of the planet gets infected in first week of life), etc... even Chlamydia. They all come, infect you when you are very young, your immune system wins the battle, but some folks remain inside the cells for the rest of your life, which is not a problem because the immune system is aware of their presence and keeps their numbers very low. That is if you don't have Borrelia, which is immuno-supressive and somehow manages to lower the immune response your body can mount, not only against Borrelia but against a wide number of pathogens.

There is a recent study published on the prestigious PLOS journal, showing mice sick with Borrelia no longer develop immunity to influenza after they are given a vaccine. Have a read here
journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976

What is the connection between influenza virus and Borrelia ? None, except for your immune system. It becomes suppressed by Borellia then it no longer responds properly. Even Candida, which is a normal inhabitant of the human flora, becomes a huge problem for most of us. Just like with the AIDS patients, but not as brutal.

So if you manage to get your Borrelia numbers down, your immune system will kick back in and all these coinfections will start to lose ground.

finisului17 said...

Continued with another 2 schemes of antibiotics that got me even worse-had symptoms like an Alzheimer patient.

The problem with some LLMDs is they do not follow the treatment closely with tests to see what's going on. First of all there are lots of things to check before and/or during treatment, like markers for possible autoimmune illnesses, liver, kidneys. Vitamin B6 in large amounts can be very toxic to the nerves and will give you a similar clinical picture with neuro-lyme, so good LLMDs check for these.

Also, bombing with ABX without detoxing can be very dangerous. Detoxing means a bit more than just drinking lemon water, can mean taking activated charcoal, chlorella, chelated magnesium and in some very bad cases, Gluthathione shots...

finisului17 said...

Started a condensed Cowden protocoll on wich I feel slightly better, not the constant feeling of dying and now have an appointment in a clinic in Germany .

These herbs do work, but it takes months. Sorry but i've seen significant progress only after 4+ months of taking all the herbs in the protocol diligently. I too had to wait for 8 months to get to Germany, they are grossly overbooked. I'd say that it's a good idea to take the Cowden protocol until you get to Germany, but in the mean time i also think it's important you do regular blood work (liver, electrolytes, etc...), urine, an abdominal ultrasound. The ultrasound is important as Bartonella can produce multiple granulomatous lesions in liver and spleen, which can rupture, and that is a very serious condition, but these complications are rare and seen only with AIDS people. Nevertheless the Germans ask you to check it.
www.ncbi.nlm.nih.gov/pubmed/10400104
If you tell the doctor you have Bartonella during the ultrasound, they usually know what to look for.

The Germans will ask you to do all these tests before you start the clinical picture is similar with many other diseases. I will send you by email some of my blood work before going there to see what markers are they usually checking.

Take care and talk more by email

Post Edited (mpost) : 12/30/2015 10:00:55 AM (GMT-7)

mpostelnicu,
I just read that article that you posted above (journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976) - very good article, thank you! - and this supports something I've been considering for a while now. Do you have any articles already bookmarked that show how long this type of suppressed immune function lasts? Do they know yet?

I still battle some pretty serious adrenal fatigue and I know that it also has a lot to do with just how functional our immune system is, but it seems I'm still 'lagging' and have wondered if it was connected directly to either the Borrelia infections that I had, or if it had to do with the amount of time that I was infected and untreated.

Any thoughts or articles on this would be appreciated.

Traveler said...
mpost,
I just read that article that you posted above (journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1004976) - very good article, thank you! - and this supports something I've been considering for a while now. Do you have any articles already bookmarked that show how long this type of suppressed immune function lasts? Do they know yet?

They don't know, so in the Discussion (not in the Results) section of the article they engage in a bit of speculation (it is allowed there, as guidance for future studies).

"It is tempting to speculate that Bb requires suppression of early-induced GC B cell responses, but does not require its continued suppression for fulfillment of its lifecycle.
....

The presence of Bb, which is known to express numerous complement-inhibitory proteins [7,8], including a C4b-binding protein [39], or the ensuing inflammation of these tissues, may result in a reduction in local complement C4 deposition on the FDC, which is indicated by the lack of staining for C4 deposition on FDC (Fig 4 and S1 Fig). While speculative at this time, it is possible that a lack of antigen-C4 deposition diminishes antigen-presentation by the FDC to GC B cells. Reduced antigen-presentation could result in the premature collapse of the GC responses, which we have demonstrated here and previously [20,22,28]. We hope to test this model in the future."

They speculate here, the bacteria produces a protein that is usually produced by the body after the infection fight is won, to calm down the immune response and help clean up garbage (dead cells, etc). This protein C4b connects with the C4 which is used to transport antigen (parts of the bacteria that can be used for identification) in the germinal centers (these are in the lymph nodes and they create cells that are used to fight future infections of the same kind, so this is where long term immunity is created).

So, to summarize, the bacteria produces a chemical that stops a message the body uses to develop long lasting immunity to ANY infection, so the body never "learns" well how to fight Borrelia or new infections. Clearly, if you get rid of the Bacteria, this chemical is no longer produced and your immune system will start to memorize again how to fight infections.

However, you can see this article is published July 2, 2015, so it's like cutting-edge research, latest and greatest, and they just barely understood the bacteria is immunosupressive and barely got an idea as to how... Will take a few more years to understand exactly how and what can we do to prevent it.

I have a lot of faith, there is significantly more funding now for research, there is a big scare in UK and some parts of the US and Canada with this disease, lots of media attention, so the funding will only get bigger and research will get better. And this is not AIDS, it's not a virus, Lyme bacteria is huge, can be seen with a normal microscope, and triggered with antibiotics, so being so large it has lots of vulnerabilities, it is a very complex machinery. I am sure this disease will be fully cured in 5-10 years from now. Until then i guess we can just try to manage it ...

Traveler said...


I still battle some pretty serious adrenal fatigue and I know that it also has a lot to do with just how functional our immune system is, but it seems I'm still 'lagging' and have wondered if it was connected directly to either the Borrelia infections that I had, or if it had to do with the amount of time that I was infected and untreated.

Any thoughts or articles on this would be appreciated.

No idea. Maybe damage from the infection, but who knows...

Post Edited (mpost) : 12/30/2015 10:01:27 AM (GMT-7)