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

Ok, let me explain...

(THE PROBLEM IN SUMMARY IS THAT AGAINST THE PRESCRIBED PLAN I DID STOP THE ANTIBIOTICS LAST FRIDAY AS MY GP MADE ME FEEL SO AFRAID AND UNSAFE! I WAS NOT FEELING ANY BETTER AFTER ALMOST TWO MONTHS AND THAT MADE ME PANIC THAT THIS AIN'T THE RIGHT THING TO DO, I FEARED CELL DAMAGE ETC. BUT NOW THE BURNING IN MY HEAD IS WORSE THAN BEFORE AND I WONDER IF THESE THINGS ARE CONNECTED AND I DON'T KNOW WHAT TO DO NOW! SHOULD I CONTINUE FROM WHERE I WAS? CAN I? IS THERE RESISTANCE NOW?? WHAT DOES ONE WEEK BREAK DO?)

Here's in more detail for those who have the energy:

Since mid July I have been on an antibiotic protocol for Chlamydia pneumonia and Mycoplasma pneumonia (both spread into the nervous system, no superficial respiratory issues, only/mainly neurological symptoms).

I personally am not so sure whether these infections are the actual culprit, but my LLMD does think so since I didn't respond clearly to his IV trials for Borrelia, Bartonella etc. and since I was found to have high IgA and IgG antibodies for both of these bacteria and also bioresonance showed activity against them.

However, earlier before treatment I did test positive also (through Elispot) for Borrelia, BABESIA, BARTONELLA and CMV (have not tested for other viruses properly, I higly believe I have them tho!) and so many people here on this forum keep telling me my situation sounds like Babesia... pressure in head, ringing in ears, nothing helps, no reactions... So I don't know if it's true what the dr thinks... It's very difficult in my case...

WELL. Anyway I started following the plan he gave me:

Tetracycline 250 mg 2×2 (first two weeks 2×1, apart from dairy and minerals)

Azitromycin 500 mg 1×1

Every month: 5-day pulse of Amoxicillin 1000 mg 2×1

and

5-day pulse of Metronidazole 250 mg 2×2

+ other stuff like NAC

The scheduling was not good for the first three weeks, I hope it's still ok though, overall it was very tiring to do this especially when not noticing any positive changes...

Then last Friday I went to see a GP in order to get control labs (liver, blood count), sick leave, tell her about my new neuropathy etc...

She is surprisingly knowledgeable and understanding regarding these difficult mystery illnesses (it took almost 4 years to find someone like that!), she even encouraged me to go abroad to get treatment... But now hearing how much broad-spectrum antibiotics I have been taking and not feeling better, she was very very very worried. She told me I would never recover from this, my cells, my gut and so on... Well, I didn't panic as I already knew how crappy this situation is, I've got nothing to lose anymore I guess but nevertheless I did begin to feel more and more unsafe (considering I'm not given the possibility to keep in touch with my LLMD while doing this at home) and that's why on the very same day I just decided to stop the antibiotics. I feel so stupid now but somehow I felt like I need a break and see what happens... Probably I should have continued for the remaining about 7 weeks but I guess you friends know what it is like... to be alone with all these questions...

The following evening the burning in my head became worse/came back. I had not noticed it was better for the last few weeks, or at least I had not been bothered by it so much... I didn't notice since all of my other symptoms (e.g. pressure in head, tinnitus, neuropathy, chronic severe fatigue and weakness, light sensitivity, eye discomfort...) were still present just like they have been for many years. And the burning you know, it is something that varies in intensity from time to time... even without any treatment.

Now I have been trying to contact my LLMD but it's made very difficult. That's why I'm here. You have experience. Help me. I'm a young female. Everything around me is destroyed, it's very difficult to survive...

Should I continue the protocol? Was it too early to judge?

Or is it in vain to go back after the break? Could it be that these ABx won't work anymore (if they ever did)?

If I can restart, should I continue from where I was or should I start slowly? Last week I did my second Amoxicillin pulse, now I should be doing the Metro pulse... Along with the main Tetra and Azitro.

I have read here that some doctors do pulses like "two weeks on ABx, two weeks off" so I wonder if a break is that bad after all? Hehe...

And finally: HOW LONG DOES IT TAKE TO KILL CPN AND MYCOPLASMA?

These infections are something evil but we all know that already. End times. Be prepared.

Thank you soooo much, you made me feel mentally a little better! Good information, thank you. And so quickly!

Yet there are still so many questions...

Somehow I do feel like I should continue 'till the time the dr planned... 'till those medications that I still have left are used up...

Does anyone have any tips for preventing cell damage and things like that? I'm afraid since I already have severe tinnitus (no cell damage there before but I'm afraid of such) and fatigue (which could be related to mitochondria). I've been taking NAC, vit. C, Mg L-theonaat, curcumin spray... and some random things here and there... foods rich in antioxidants... I should be taking CoQ10 but I have not had the energy nor money to order everything yet.

Girlie, I will go to the lab tomorrow morning so would it be okay if I restart the ABx in the evening? You see it says that "first 2 weeks only 2×1" but can I go back to 2×2 where I was?

Also: It would be a high time to do the metro pulse (I've done only one a month ago!) so can I do that right away too? I don't really understand how this kind of break will affect things... Should I attack heavily or more gently...

And yep, herbs later if this isn't enough. I have tried some but not Buhner.

Be blessed.

In my opinion drs are just guessing more than half of the time. I would treat with herbs and supplements and that's exactly what I do. I went from feeling like I was dying to feeling pretty darn good and in some ways better than before. I still have a few symptoms but they are waning over time.

I just had to read a few threads and see a few drs to know they are more concerned with their golf score than their patients. I was told "it's in your head" "take this and you'll be cured" " you might become paralyzed" "go see other drs" "I don't know anything about this" "you don't have it" " goto mayo clinic" and essentially "go away I'm not testing for anything else" alL By the same dr. That's not including the uninformed opinions of an infectious disease quak!

You can beat it, naturals are the best option for me but you have to decide for your self. Good luck to you!!

elvin said...


I just had to read a few threads and see a few drs to know they are more concerned with their golf score than their patients. I was told "it's in your head" "take this and you'll be cured" " you might become paralyzed" "go see other drs" "I don't know anything about this" "you don't have it" " goto mayo clinic" and essentially "go away I'm not testing for anything else" alL By the same dr. That's not including the uninformed opinions of an infectious disease quak!

To clarify - you are not talking about LLMD's - but 'regular' Dr's.

I'm a Physcian Assistant with Lyme I recommend you get back on the Lyme meds. Treating this disease is a marathon.

WalkingbyFaith said...
Eaglet,

For what it's worth, the anxious, panicked tone of your post sounds very much like babesia to me. Babesia can cause a lot of fear, panic, and anxiety. You're not stupid. It's the pathogens wrecking your thought process and generating the fear and anxiety.

That is 100% what happens with my babesia herxes. The anxiety and fear can so crippling, it drives me crazy and I can't think straight.

elvin said...
In my opinion drs are just guessing more than half of the time. I would treat with herbs and supplements and that's exactly what I do. I went from feeling like I was dying to feeling pretty darn good and in some ways better than before. I still have a few symptoms but they are waning over time.

I just had to read a few threads and see a few drs to know they are more concerned with their golf score than their patients. I was told "it's in your head" "take this and you'll be cured" " you might become paralyzed" "go see other drs" "I don't know anything about this" "you don't have it" " goto mayo clinic" and essentially "go away I'm not testing for anything else" alL By the same dr. That's not including the uninformed opinions of an infectious disease quak!

You can beat it, naturals are the best option for me but you have to decide for your self. Good luck to you!!

Yeahh that's how it goes - even with my LLMD I feel like he's making guesses. With "normal doctors" (these people are usually far away from "normal" tbo) it's a norm. That's why i gave up with them long ago...

I have tried natural remedies also, mainly supplements, but I have not ended up feeling better at all. I have not found anything that helps me. Not yet. I have only ended up developing more and more problems. That's why I thought I need something stronger... but I don't know... No reactions yet...

Thank you so much for your support and understanding! We're in the same boat. It's crazy how there are so many of us suffering, yet we all feel so alone and misunderstood. It's a wicked world.

Which supplements/herbs/other remedies you have found clearly beneficial? What kind of symptoms you had when you felt really bad?

Eaglet said...

Girlie said...
Don’t worry about the symptoms being damage - most - if not all should resolve with treatment.
I had a lot of symptoms - one was tinnitus - not ringing but pulsatile (whooshing sound to the beat of my heart) and it is now gone! I worried it would not ever go.
Are you taking probiotics every day? I take several and rotate. I have three different ones in capsules, one in a yogurt form (Bio-K) and Kefir. You need to protect your gut.
I Also take milk thistle seed extract for liver function.

I take CoQ10 daily - but it can’t be taken when you’re on Atovaquone.

Yes you should be able to restart at 2x2

Atovaquone? Is that the chemical found in malaria medications? Like Malarone e.g.? I have not tried it yet, although i did get a recipe for a short trial before... But right after that we found out about the Cpn and the dr didn't recommend mixing Malarone with the Cpn protocol. So yeah, NOW I could still take Q10 for miochondrial support, maybe in the future I cannot. I have used it before and didn't notice anything, but I don't know, maybe it takes time or maybe it's just for protection...? Do you recommend any specific type/brand of CoQ10?

Yes atovaquone is Mepron and also in Malarone.

If the Cpn protocol is the one with Rifampin, then you're right it doesn't go with the atovaquone.

I take the CoQ10 for my heart. I don't notice anything when I take it...it works behind the scenes.

I've bought Jarrow CoQ10 and Swanson as well...and one more...can't remember now...lol.

Eaglet said...

Girlie said...
Don’t worry about the symptoms being damage - most - if not all should resolve with treatment.
I had a lot of symptoms - one was tinnitus - not ringing but pulsatile (whooshing sound to the beat of my heart) and it is now gone! I worried it would not ever go.
Are you taking probiotics every day? I take several and rotate. I have three different ones in capsules, one in a yogurt form (Bio-K) and Kefir. You need to protect your gut.
I Also take milk thistle seed extract for liver function.

I take CoQ10 daily - but it can’t be taken when you’re on Atovaquone.

Yes you should be able to restart at 2x2

Yes, I am taking probiotics (along with S. Boulardii) but I'd like to take more and better ones. Uh, it's so difficult to schedule everything!! No actual GI symptoms so I hope the situation is still quite alright... I'd like to take yogurt and kefir aswell but I'm not sure if we have as good a product in the market as the one you mentioned. Some people avoid all dairy but do you think fermented dairy is okay as long as you're not allergic to it? I'd love to have some without feeling guilty... It would make my diet more varied. I also eat a lot of prebiotic foods so I hope that will compensate a little bit if I always can't take probiotics as much as I'd want to... Is raw ACV probiotic as some claim? Or just prebiotic?

You can buy Kefir at most supermarkets...and it's in Whole Foods or other health food stores.
I buy unsweetened. Kefir should be fine even if you're avoiding dairy IMO. I don't like the taste (sour milk), but my husband loves it.
There is non-dairy coconut Kefir if you don't want dairy.
Also, Miso, and sauerkraut are also good.

I have read the ACV is both prebiotic and probiotic.

Eaglet said...

Kct said...
I'm a Physcian Assistant with Lyme I recommend you get back on the Lyme meds. Treating this disease is a marathon.

Thank you for the answer! This is what I wanted to know.

I got back on antibiotics on Thursday evening. I started from where I left off. No soft beginnings. I immediately went back to 2 x 2 Tetracycline and 1 Azitromycin AND today on Friday I started my second metro pulse. Actually it had not been too long since the last one, approx. 21 days but I decided to do it now. Do you think it's ok? I wasn't sure whether it would be better to attack strongly or more gently after the 6-day break... I went with the strong approach as I thought it would surprise the bacteria, hehe. An unexpected move.

Do you think the break didn't ruin the process? Is it ok to have a break sometimes?

It is okay to break sometimes...yes.

My entire protocol is pulsed with breaks...and this is with one of the top LLMD's in the U.S. (world really)

WalkingbyFaith said...
Eaglet,

For what it's worth, the anxious, panicked tone of your post sounds very much like babesia to me. Babesia can cause a lot of fear, panic, and anxiety. You're not stupid. It's the pathogens wrecking your thought process and generating the fear and anxiety.

Oh yes Babesia... That's what everyone says to me here. And I believe! Weird head sensations, ear ringing, not reacting on anything, not getting better, once tested positive for it, anxiety (history of OCD)... Are there any other possible signs/symptoms/things that would point out to that direction? I sure have a lot of other symptoms aswell but I'm not sure whether they are likely caused by Babesia or Cpn or Myco or CMV or what...

Yeah as I said, here everyone suggests Babesia yet when I tell my LLMD about this suspect, he just brings up this pityful look on his face, he's like trying to say "you don't know anything." He doesn't believe Babesia to be a problem since I didn't feel anything massive during the IV trial of Biseptol and later Artesunat. He kept telling me the clinical picture seemed like Bartonella... He never talked about Babesia. I find it strange since Babesia is known to act as a sort of blocker and since other patients say Babesia.

Haha, here I might seem anxious and panicking, I know I am a little, but for the most part right now it is because I don't know if we are treating the right thing! I wonder whether I am doing this in vain and if I instead should be taking some malaria stuff. I just feel so uncertain.

But we will continue to walk in faith, won't we?

I will list my main naturals below in order of effectiveness.

To be clear, yes I was referring to non-llmd drs but my choice in not pursuing an llmd is due to the fact that I have seen on here or any other chat rooms that they don't help that much either. I'm sure some of them do but the overwhelming majority of people don't seem to get that much relief from them.

My case maybe different because I found the tic and pursued medical/self help pretty quickly. I have been let down by the medical profession before so it was no surprise. I quickly began researching self cures, as I did for previous illness, when it became obvious that my drs were overpaid buffoons.

Best naturals I've found

1. Monolaurin (by far the best supplement, start super slow!)
2. Oregano oil
*Whoops I forgot Diatomaceous earth-I definitely herx from this
3. Boron pill (I used borax for a while but it freaked out my wife, it's the exactly the same as the pill but it makes her at ease with it so I use that)
4. Apple cider vinegar (2 tbls 2 times a day with orange juice)
5. Cinnamon pill
7. Olive leaf pill
8. Apple cider vinegar pill (easier on the stomach but not as strong as liquid)
9. Niacin (I tried a few times but it kicked my butt and I don't use it but it should be number 1 or 2 on this list)
10. MSM

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.

Post Edited (sebreg) : 9/15/2018 8:18:48 AM (GMT-6)