Help me please... I might have made a mistake...

sebreg said...
Btw I wouldn't worry about the abx break. I've done it whenever abx make me tank. Then I restart whenever I regain baseline, but much more slowly. Have to listen to your body in these cases. This is a marathon, and it can take a lot of trial and error. I'd still talk to your doc about the possibility of a more conservative, slow treatment approach.

The burning in your head could be due to a herx from the antimicrobials. I certainly got that symptom when I was treating aggressively. Gabapentin helped calm the fire (not that I recommend that med, but in my case it really bailed me out), but I did have to pull back on killing meds for a while, burning neuropathy is one of the most debilitating symptoms I ever experienced (along with suffocating air hunger).

I'd keep researching your options. Antibiotics have been the most helpful tool for me, but they aren't without drawbacks and risks. I think the next best option are herbals (including Stephen Buhner's protocols).

Detox as much as you can, I'd recommend trying out lots of different methods and seeing which ones work best for you. The most effective ones for me are epsom salt baths, infrared sauna, lemon water, chlorella.

Forgot to mention, metrodinazole from what I recall potentially has some effect against babesia.

Thank you for your messages everybody and sorry for the late reaction to the last ones (the amount of spoons has not been very generous).

Anyway I am here to write a little update in case someone might be interested. But first to Sebreg: Thanks for the Babesia-related tips and your experience shared. I will definitely try to push my doctor to try to do something more about it. I really wonder why did he think Babesia to be almost excluded after the trial of IV Biseptol and Artesunat?! They were rather short trials as compared to this oral Cpn plan that I have been following now. I really wonder why he is so certain about the Cpn and wants me to take oral ABx for several months (even though I'm not feeling anything special), yet he wanted to stop the Biseptol so early? I mean... why did he judge the Babesia route so soon but not this one? Are IVs so much stronger or is it because Cpn is an intracellular bacteria...?

The burning in my head, you suggested it could be a herx, but I don't know if it is since it has been there already long before any actual treatment. It's one of my main symptoms, not something that I get after using meds. Ah, it's so complicated in my case!

But yes, the break, I'm glad to hear I'm not the only one who has done so! My mom got a short reply from the dr saying "she should continue the protocol", so I guess that means the break was not a catastrophe. He said if I experience herxes, then a few days long break could be even suggested BUT here I think he didn't understand why did I stop them. It was not because of herxes but rather because of the lack of them!



Now to the update:

All together I have been on this oral ABx protocol (Tetra, Azitro + Metro and Amox pulses along with some supplements like NAC, D3, Turmeric, Mg L-Theonaat - for "inflammation in the brain" - etc.) for about 10 weeks (first I had them as an IV for a couple of days and inside these 10 weeks there was this 6-day total break). I'm not any better, I'm not herxing as far as I know. I feel horrible but mainly in the same way as I have been feeling for the past three years (this seems to be the case with everything that I have tried so I really wonder what's wrong with me?!?!) No new symptoms except neuropathy in feet which started after cold exposure (I should make a post about it, it's so strange and it breaks my heart) and the ringing in my ears is maybe a little worse. I know it can take a long time before even minor improvements can be felt (Cpnhelp.org also states so) but I think it's natural to start getting doubtful whether I am yet on the right route or not.

I don't know what to tell my doctor when I travel to see him again maybe after 4 weeks. Sure I will tell him how I am feeling but then what? Knowing him I can predict he will be very stressed out, anxious, not really knowing what to do with me, suggesting some special tests regarding some toxins maybe... and I will cry (if I can but probably not). Of course it's possible these few weeks that I still have meds for will bring about some changes (hopefully positive) but if nothing happens then what to do? Any ideas? I know we will test for Cpn and Myko again to see what's going on there, maybe we will continue the plan or make some changes to it but I'm really afraid to take the meds if nothing seems to change even after one more month. I wonder if there really is something else we should be treating or is it really this. It is complicated, it is a marathon, it takes trial and error yes, BUT WHY AM I NOT REACTING ON ANYTHING?! Unlike other people, I cannot tell "this medication made me feel this and that" and "this supplement caused more so and so", "after taking X I got a huge attack of Z", "...it calmed down following the detox method nro 101". I'm always just like "it's the same".

Any advice is appreciated.

Notime4lyme said...
I don't know if more is always better when it comes to antibiotics.

Maybe you might want to focus on building up your immune system instead of killing all the bugs off? I don't know if this is good logic, but I felt if I was on a treatment for a month or two, and I felt the same, that it must be time to change things up. Just because you don't react to antibiotics doesn't mean you don't have Lyme.

What is Cpn? I was able to clear up my mycoplasma pneumonia pretty quickly, but I don't think it was anything tick-borne.

Before starting these antibiotics, I had been sick for about 3 and half years (non-stop intoxicated feeling, pressure in head, eye discomfort/light sensitivity, tinnitus, paresthesias, chronic fatigue/weakness etc.) and from the very beginning I have been trying to build up my immune system but it has not helped me. Early in this mystery illness I though it must be because of poor immune function (you see, I had been taking ABx when everything suddenly started) so I really treated the gut, took good supplements, followed a super diet and tried many kinds of natural therapies, some meds also like LDN, T3 and B12 injections. But I didn't react to anything and I was still feeling weird. And I also received test results indicating chronic infections and chronic worsening immune-suppression... so then I had to start considering something more aggressive. But even still... no reactions... that really makes me wonder what really is the reason...

What would you suggest for the immune system support? What would be good as my next trial? Beta-glucan? Lion's mane (chaga I've been using)? Monolaurin? Gentle things like stress reduction and nutrition are not enough for me. What else there is that I could do? I bet a lot but I'm tired of researching.


Cpn is a short version of Chlamydia pneumonia. Check out cpnhelp.org . My regular antibody titers (IgA and IgG) were high as they were against Mycoplasma pn. also. My dr ordered the tests after the bioresonance machine had said I have activity against those microbes. I don't know if they really are the culprit or not. I have once tested posiitive also for Bartonella, Babesia, Borrelia and CMV but now my dr thinks we should treat Chlamydia pn.

What symptoms Mycoplasma caused you? How did you get rid of it? I really doubt that to be my only problem though. My neurological head feelings are too bad.

WalkingbyFaith said...
Eaglet,

You mention your symptoms are still pretty much what they were and nothing has really changed with treatment. I'm wondering if you have cuurent or past mold exposure. CIRS from mold causes pretty much the same symptoms as Lyme/co and continues even after removal from mold exposure for genetically susceptible people unless they get treated for CIRS. Something you might want to look into.

/www.survivingmold.com/diagnosis

biotoxinjourney.com/an-overview-of-biotoxin-illness/

Yes, I just read an article saying how biotoxins could be behind the illness of those who just feel bad all the time in a "static" way, not having good and bad days etc., only bad in a blank way. That definitely sounds like me, but to be frank it's not very likely that I am suffering from a mold issue. Currently I am not living in mold and don't think I have lived even before except during some travels maybe for a short time. The funny (actually the horrendous) thing is that when I was getting treatment/consulting a LLMD in an other country this last summer, I first ended up in an apartment which surely had mold underneath the reconstructions... It was horrible and totally heartbreaking since I have always been afraid of such things. I received lots of detoxifying IVs during that time however so I hope it's fine, I really hope...

My dr also (suspecting the same as you at one point) wanted me to test for MMP9 and VEGF which are some markers associated with mold illnesses but the results did not indicate any major problem (MMP9 was below the range however?).

I will go through those link definitely. Do you think there is hope IF I should have such a problem? Is there any way to really know?

Eaglet i have all of your symptoms and plus more on top of thos already torture from hell...you mentioned that you got it around from the time you were on antibiotics ,the reason i ask is because im fighting for my life after taking a round of antibiotics for h pylori and that incluided the tetracyclin antibiotic..that same week my life was turned upside down so now here is the question ....what antibiotics were you taking around the time you got the weird brain complications?? And did you already have a diagnosis of lyme ?? Reason is because from my research alot of ppl are searching for the sane answer after getting this misterious illeness after taking antibiotics or ssris or propecia and so on ...leaves me puzzled is that from "lyme" or "brain infection" that we are chasing in circles ....i never heard of any success stories about that unless they dont have it that severe ..this is such a big mistery that leaves all of us confused....pls let me know . Thank you

oregonhay said...
Lyme feeds on D3. I would not take it whatsoever.

Lyme “feeds” on D3??? Where did you get that info from?


We need to have a certain level of D in our body.

So do you cover up in the spring and summer so you don’t get any D from the sun?

I think Vitamin d affects our immune system - so maybe that’s why you feel lousy on it?

The Marshall protocol consisted of lowering vitamin d - that was a big part of the treatment.

Notime4lyme said...
It sounds like you've done a lot of things already. For me, even though I came up negative for a lot of viruses, anti-viral herbs seemed to help me a lot, so sometimes it's hard to tell what infections to treat. I'm so sorry that you haven't found something that helps yet.

The mycoplasma pneumonia mostly gave me lung-related symptoms. I had a weird cough, and I just generally felt like I was under the weather. I can't quite remember, but I think teasel root helped, and oregano oil, but it gradually went away.

Which anti-viral herbs you found clearly beneficial if you can tell? For quite a long time I have suspected the reason for my illness to be a virus instead, but my doctor – although he admits it's possible – thinks viruses are something that most of us have when sick with Lyme and co and they are usually not the problem. He has an idea that viruses will subside on their own as the bacteria are being eliminated... well, lessened whatsoever. I really in a sense hope that that's not the case since I feel like I have some hope left in the world of viruses. Maybe I get the chance to try some antiviral medication later on but usually they don't do that and I wonder why. Dr. Horowitz in his book says that antivirals can sometimes be tried on people whom long-term antibiotics have failed/who don't adequately respond to right kind of abx (and if they have high viral titers or positive PCR). However, soon after that he says the benefits patients get following classic anti-viral treatments are very minor most of the time... and this makes it look like it's not the virus that's responsible... But maybe for a few cases here and there it is!

And yes, that's the typical presentation of Mycoplasma pneumonia. I don't have anything of that sort (lung-related), but I have read that these stealth microbes – which are usually not a problem – can spread into the nervous system just like Lyme and co. First they might enter the body via the respiratory tract and cause an acute localised normal illness, but when given a chance (immune suppression for a reason or another), they can go wild and cause almost whatever. At least this seems to be the case with Chlamydia pn. according to my dr and apparently many studies. Maybe with Mycoplasma it's not so common. I wish we could know better.

oregonhay said...
vitamin D3 made me really sick and worse and everytime I took it, it would set me back and I wouldn't feel good for 2 weeks after taking it. Lyme feeds on D3. I would not take it whatsoever.

when I wasn't making progress, my LLND said mold. I got rid of all mold and I started making progress again. I totally underestimated mold. a little bit will cause 100% of what you describe. replace all bedsheets, shower curtains, pillows, pillow cases, and install a UV/HEPA filter fan, the $35 from amazon near you bed. Cup of Epson salt or Borax in the washer machine every load

i made the most progress on ivermectin which I take every two weeks. That and IV penicillin

your water source could have contaminate. I bought a water distiller from amazon for $99 and I use reverse osmosis, just in case to eliminate any possibility of heavy metals/mold/crap in my water.

cats claw is the strongest herb I have and I can only take 1/4 tea spoon. I would try herbs they are stronger, but slower, than ABX I would very surprised about this fact

I have not felt better nor worse after taking D3. There have been periods when I have taken it (because of lowish values) and periods, also long ones, when not. As I have told here, I have not noticed anything significant after any supplement/medication/treatment so far. And that's frustrating to say the least, makes it very hard to know what's going on.

Thank you for the suggestions but they are not very relevant when it comes to my situation at the moment. I live in a new building where literally everything that I have is new (clothes, furniture, all those curtains, sheets, towels etc., pillow I try not to use because my posture has already suffered too much as a result of being so sick and tired...). Before this I lived with my parents and siblings at home, there might be some items that are not so fresh but you know, it was not there that I got sick. I got sick suddenly in 2014 when I was overseas in Asia, before that (and also after), I lived in an other country where I don't think was mold to that extent at least (I didn't end up sick when being there) and then I came back home and yeah, always feeling the same whereever I am at. During these years I have been living in several places but it's always the same. And the last two years it has been absolutely mold free I believe. So yeah, I can't really do better anymore.

And what comes to cat's claw: I still have two tincture bottles left (but the expiratiom date was 02/2018?) from my short Cowden protocol trial in 2016. Back then I did try the cat's claw for about two months, gradually increasing the dose but I didn't notice anything in that time. Maybe it was too early to judge but it was too difficult to keep on doing because during that summer I developed this chronic more severe fatigue and weakness + polyneuropathy... It was overwhelming... Not sure if those herbs had something to do with this worsening or was it LDN or the T3-hormone... or...

Post Edited (Eaglet) : 10/2/2018 3:46:48 PM (GMT-6)

Anitas said...
Eaglet i have all of your symptoms and plus more on top of thos already torture from hell...you mentioned that you got it around from the time you were on antibiotics ,the reason i ask is because im fighting for my life after taking a round of antibiotics for h pylori and that incluided the tetracyclin antibiotic..that same week my life was turned upside down so now here is the question ....what antibiotics were you taking around the time you got the weird brain complications?? And did you already have a diagnosis of lyme ?? Reason is because from my research alot of ppl are searching for the sane answer after getting this misterious illeness after taking antibiotics or ssris or propecia and so on ...leaves me puzzled is that from "lyme" or "brain infection" that we are chasing in circles ....i never heard of any success stories about that unless they dont have it that severe ..this is such a big mistery that leaves all of us confused....pls let me know . Thank you

Anitas, I know your tears, your fears and your frustration. And I can't believe that I finally come across someone who's in the same boat! Is there any way I could contact you more directly, email for example? You see, I got mysteriously and suddenly sick in autumn 2014, that is 4 years ago, I was still 18 years old. Ever since that day I have been researching and trying to figure this out either on my own or with the help of doctors etc. I've tried many things with no help, it's so confusing isn't it?! Early on in this hellish journey, I mean in the first few days/weeks, I saw people in the Internet telling how something similar had happened to them after the use of some meds (or drugs) and it all looked very hopeless and fearful and horrible, like a horror movie, like the worst nightmare one could ever have, like a death-sentence, like an end of it all... I really know how horrible it is... when everything suddenly changes and there you are: in a prison.

Those stories from other people were rather old however and just a result from googling so I have never talked to anyone having experienced this torture (except last summer I met a girl in the Lyme clinic I went to who had ended up sick with many same symptoms after some vaccine and EBV infection).

So yeah, I'm happy (in a sense) to hear that you have found lots of people with this problem! Are they on Fb or where? The people who have taken antibiotics and then quite suddenly development STRANGE, SCARY, BOTHERING SYMPTOMS that leave doctors saying there's nothing really wrong with you? I want to talk to them, we need to organise a club or something!

To answer your questions and more:

- I was taking Minocycline 100 mg/day (it's part of the tetracycline class, capable to cross the blood-brain-barrier, should have effectiveness over many infections like Lyme)

- I was taking it for a rather stupid reason: dermatological problem - colorless, sometimes itchy bumps on forehead. I just went to see some GP and asked if abx could help with that since I knew they had helped some others with the same issue... (maybe something allergic after all?)

- I had taken it for a little over three weeks without any notable problems BUT THEN ONE EVENING I CRASHED AND HERE I AM STILL

- I didn't have DG of Lyme back then since I didn't experience any chronic symptoms before this torture started. Or well, I did suffer from OCD which could be infection-related but I think it was maybe rather a spiritual battle. It eventually caused me a great deal of stress (physical and mental) which accompanied by the abx and other immune-suppressive factors (not sleeping /eating much etc.) caused something to turn around in my body. It's still a mystery to me as it is to you, some doctors and my research says that it's likely the abx made some chronic infection break free from the sleeping state... because abx and other things they lower the immune system and probably much more too since Minocycline can go inside the cells where some persistent bacteria reside? I don't know in detail (I've tried to find out before but now I am too exhausted and I have given my situation over to the Lord almighty), but they say abx can activate chronic infections and I believe that's what's going on with vaccines and such as well.

- As I said, no Lyme DG back then BUT I wouldn't be surprised if I knew I had it already then. In 2007 I was hospitalised because of sudden half-sided facial paralysis (Bell's palsy) and other neuro symptoms like terrible headache, neck pain, light sensitivity, tiredness... They suspected Lyme and gave me abx for a week but then discontinued because the PCR from spinal fluid was negative (as it is even with acute encephalitis five times out of ten). Instead of Borrelia PCR, they found Varicella Zoster (VZV, a herpes virus, causes chicken pox) PCR and thus I was diagnosed with Ramsay Hunt's syndrome. I recovered but it was after that when I developed some annoying complaints like chronic eye floaters, feeling of a lumb in a throat sometimes... But otherwise I was a super healthy child, healthier than others.

Now I have many other symptoms too, the list I wrote earlier was not complete but they're the main ones. What else do you have?

How did it all begin for you? Mine started with a strange "neurological fatigue attack" after which I just never felt normal again. My head felt weird. I felt like in a bubble. My eyes felt weird. Then after some days it went on and I experienced strong paresthesias all over my body. They were like painful stabbing sensations, seemed like someone was stabbing me with a needle randomly here and there. Then came the horrendous crawling under the skin... Or "flowing" under the skin... which sent me to the ER to be laughed at.

What things have you found to be wrong with you? Positive Lyme and co? Low CD57? High viral titers? Many more or less minor things besides those have been wrong with me but nothing has the capability to explain my situation and my symptoms. Except maybe chronic infections... but I wonder why I don't react to any treatment?!?!

EDIT: Anitas, I found you email. If you don't appear here anymore, I will send my reply to you in another way!

Post Edited (Eaglet) : 10/3/2018 3:34:33 PM (GMT-6)