Hi all,
Im trying to evaluate my health suffering, because it a 5 years now, when I'm very sick.
I was on several protocols for that time, but last year after repeated „flu-like“ crashes I got a lot worse – most time from day in bed, only 15-20 minutes on feet, really exhausted, lot of inflammaton feelings from my body.

I will appreciate all the opinions – because now Im very thinking what to do next in my life.

Symptoms in points:
- sick from day to day 5 years ago
– fatigue (cfs)
- feelings of inflammation – body is cold but hot inside ...like boiling
- hard mornings – like small fever, but no-fever...only feeling
- standing or longer sitting problems – muscle pain coming early
- PEM and repeated „flu-like“ crashes
- blurred vision - worse when Im exhausted

I saw 4 really good doctors in 5 years – Kenny De Meirleir was the most experienced I think.

1) dr. Klubal wanted to treat me with Lyme, Bartonella, Yersinia, Erlichia, Helicobacter pylori
2) dr. Špaček wanted to treat me with Lyme and Erlichia
3) dr. Ďurovská wanted to treat me with Lyme and Chlamydia
4) dr De Meirleir wanted to treat me with chronic active Lyme, SIBO, leaky gut and food intollerances

I have undergone several treatment protocols in that 5 years
- 1,5 year on Tetracyclines, Rifampicine, Azithromycin and pulses of Metronidazolum
- 1,5 year on Clarithromycinum, Azithromycin, Amoxicilin and pulses of Metronidazolum
- 2 weeks on Ceftriaxone (Rocephin)
- 1 year on full Cowden support program

supplementary treatment for sure – detoxing (epsom salt bath, sauna – now Im crashing after this), sc. IG, minerals, vitamins, gut treatment with Normix-Mesalazine and many types on probiotics, low sugar diet, no gluten, no lactose, trying SCD diet for long time.

ALL THIS DID NOTHING FOR ME – AND NO HERXES REACTIONS
This is, what makes me most uncomfortable with all Lyme and co-infection diagnoses :-/

What helped me in this 5 years?

HBOT – help with energy, less muscle pain, less inflammation feelings in my body
FEVER – only 2 times I had it, but always with some changes for few days – no inflammation, more energy, little bit better feelings of all.

dr. Kenny De Meirleir still want me on „persister protocol“ but Im really scared – because there was no improoves on other atbx treatments with no herxes – reactions that treatment works! The results point to Lyme, but all about it and all from my experiences from past makes me really uncertain, whether positivity is false...or if there was a seroconversion with look to WB diagrams from past.
Please, is here someone, who have same problems with no-herxes in treatment?

I attach several results and test links:

panel IgG/IgM and PCR for zoonoses – Borellia b. IgG/IgM positive

Armin labs EliSpot – borrelia b. full antigen – 3 SI, borrelia b. OSP-mix – 4 SI, borrelia b. LFA 1 – O SI

ALL main testing here, please check:
https://www.dropbox.com/sh/rp8b93jp8g5sv0w/AAAUm3jF8NLonNaSnrrHl-fba?dl=0

Health gets worse and I need to do something next in treatment. I am very tempted to try Buhner, add Biocidin LSF, stevia, oregano and garlic oil, Rehmannia for adrenal and make more HBOTs with it...and maybe try St. Georg clinic – hypertermia.

I would like to come up with something...what makes reaction – to be sure it's really chronic Lyme. I am still a bit confused with diagnoses, I have no joints pain, no migratory pain, and some other typical symptoms of Lyme...and I do not want to go misconception treatment.
Now Im ending Cowden, make more sc. IG and CBD oil and Im after wisdom teeth surgery - but without any changes in health.

I will be glad for every opinion!

Thanks all and peaceful Christmas, Martin

Hi Martin, hmm, that's tricky since you are saying you say no improvement or herxes with those various abx combos. Have you looked into mold, heavy metals, parasites, viruses? sure the tick-borne infections might be in play, but if you aren't responding to antimicrobials it could mean there are other more important factors driving your health issues. I'd look closely at mold and do some research on that one. It affects a lot of lyme patients, sometimes it is the primary driver of symptoms.

Have you ever treated for babesia? sometimes this is the infection that holds people back and lurks in the background. Could be worth exploring this one...

Post Edited (sebreg) : 12/17/2018 6:58:02 AM (GMT-7)

Hey, thanks all for opinions and tips!

I have to admit, that I felt just the same when I took loads of atbx or when I was "atbx free"
I think, maybe only SIBO and leaky gut was results of oral atb :-/

No progressive changes with treatment or reactions. I'm so uncomfortable from it!

I made lot, lot of testings in past - all available viruses tests (I had EBV in past...15 years ago) but all looks good and no-active! I took for sure Lysine and Valtrex for 1 year ...2 years ago. And I think, HBOT is really effective with all this anaerobes.

I'm trying to find tests to babesia...with fail :-/ But I hope, it was tested...by some of these doctors in past. Hope I find it! Anti-malarial atbx? Only plaquenil for 1 year...with that treatment with tetracyclines.
Without results too...Im so sad!

Hey @sebreg - thanks for tips to other testing!
Viruses...yeah... but - no mold testing, heavy metals basic tests, no provocative tests - but I tested it with long time ALA-ALC-Glutathione-NAC...trying to high doses to provoke heavy metals but no results. I have some amalgam fillings in my mouth. I'm afraid to provoke heavy metals with DMSO - to loose much from the amalgam, and I did not become toxic. Im little bit affraid of this thing! And parasites - only some basic tests - Kenny de Meirleir did it from stool analyses.

Please, is something like "gold standard" in MOLD and PARASITES testing?

One of the thing what makes me really scared long time is that inflammation feeling in my body - when I put my hand on something cold, it's a great relief! Saline makes me better from inflammation for few hours...tested!

I did "CellTrend" test in past too, for auto-antibodies, there was some outside the border - I go for test fludrocortisone and huperzine A. But Im not sure this things makes my inflammation.

I am terribly confused by all the treatment attempts.

Martin

Another resource is a new book from Neil Nathan, MD titled “Toxic: Healing Your Body from Mold, Lyme and...”.

Martin - If I were you I’d talk to your LLMD - and ask for a trial of Babesia treatment - ie Mepron plus minocycline would be a good combo.
Even just a 4 week trial to see if you get a response.

And if you did test for Babesia and you tested negative - you can’t rely on that.

Hey, thanks all! you're great!
Im from Czech Republic (EU country), there is no attention to molds, heavy metals...Lyme is also underestimated, co-infections too.

I will check all tips - I will check availability, and if something is available here in Czech.

yes, I've really tried a lot, and a lot of reading and study. I was focused on gut and SIBO for long time, but looks like no main problem in my cause. Ok - I have little bit low diversity, and high Zonulin and PGE-2 (leaky gut) - this is why Im affraid of more oral atbx - Im really happy from make my gut better after long time now.

I would rather try herbs for test response to babesia than atb - only artemisia will be problem (allergy)

Oh, I tried bioresonance in past - but, I do not know how it's a confidential method...I was little bit confused from it. Do you believe that?

Bartonella was in game in start of treatments 5 years ago, but I was without scratches and marks on my skin. My skin is very good...and color too...one of the few things that's good about me!!

Only one biologic dentist is here in Czech Republic - Im in contact with him, its in plan, remove all amalgams in near future (is very expensive, I have to do it gradually)!

Anyone hear about dr. Bozsik and DualDur method in Hungary?
http://lymediagnostics.com/2016/09/18/lyme-borreliosis-diagnostics/

do you think it would be useful to do it PET scan or galium scintigrafic method to find inflammation? but I think, chronic inflammation may be from chronic active immune system - who knows... but it explains it maybe that state change with fever - immune response. Such a consideration...

Martin

Re: herbs for babs. I did the Cryptolepis, Sida Acuta....and no response.

Artemisinin did give me a response ...but no alleviation of symptoms.


So, if you don't get a response from herbals....then don't rule out babesia.

Hey, thanks! Looks like malarone/mepron is hard to get from doctor for me now, Im thinking about herbs in first - for the reason of healthy gut too.
Anyone some expeciences with products from lymeherbs.eu?

Babesia - https://lymeherbs.eu/en/packages/595-babesia-protocol-tinctures.html

Core protocol - https://lymeherbs.eu/en/packages/364-core-protocol-tinctures-plus.html

Girlie said...
I don’t have experience with that company - I see the Babesia ones are Cryptolepis , Sida acuta and alchornea cordifolia - which is Buhners “older “ Babesia protocol.

The newer one is Biden’s pilosa instead of ac

I take all of those herbs. If you’re testing to see if you get a babesia herx, you’re more likely to herx from cryptolepis, Sida acuta, or artemisia. Bidens and alchornea are good herbs but I don’t hear of people getting strong herxes from them.

MartinK said...
Yeah, Ok! Im looking for some good source - e-shop here in EU (because customs duties and VAT)
Lymeherbs.eu looks good, but some experience are welcome!

I'll try to find out if the brands recommended by Stephen Buhner are available in these countries ;-)

Martin

Martin,

You might want to start a new post asking for feedback on Lymeherbs.eu or where people in EU get their Buhner herbs.