Very detailed and clear information on Lyme and co-infections

Hello,

I am a Lyme patient from the Netherlands. Before I got Lyme disease I worked as an audio-engineer in recording studios. After the tickbite I got handicapped and house-bound by what supposed to be 'minor' symptoms of Lyme. I've been pursuing treatment for almost 4 years now.

First I went to a psychologist because I thought I had burnout. Later I started herbals and once I took antibiotics I started seeing improvement.

I still have Bartonella which is very persistent and resistent to the antibiotics.

I recently launched a website called: Lyme-Basics.

It is basically the information on Lyme and co-infections I wish I had when I first became ill. I've written about the motivation for building the website on: lyme-basics.com/about/

I hope you check out:

lyme-basics.com

Let me know what you think of the website.

Teike

Post Edited By Moderator (Girlie) : 9/23/2017 12:17:18 PM (GMT-6)

Very nice. Easy to read. Positive, unbiased tone. Clean format. Good work. Thanks for sharing!

Hi LymeBasics - welcome to our community.

I edited your first post to remove your name. We don't allow having our names and/or contact information on here...as it can attract spam.

i haven't checked out the website yet...hopefully I will have some time later.


Now that you have introduced it, you can put a link to it in your signature line.

Are you still currently treating Bartonella with antibiotics?
Have you considered treating Babesia?

Nice site -- thank you! It's clear and simple enough that my foggy brain can handle it.

How long are you saying the abx stay in the fat cells?

I've not heard of that.

Do you have any links to articles you could post that I can read?

Hi everybody,

I wish I was in remission.

I have treated Lyme sufficiently. I don't have joint pain anymore or the typical brainfog that accompanies Lyme. I also had problems with paranoia that is gone.

I still have Bartonella. I was not positive for Babesia.

The Lyme doctors working in my country are not really familiar with Bartonella. They didn't understand it becomes resistant against antibiotics.

I was treated with two antibiotics for 3 weeks on, 1 week off. In the off week all my symptoms returned very fast. I wanted continuous treatment that they did not want to give. After a while my symptoms returned despite being on antibiotics.

It was called a herxheimer but despite continuing both antibiotics my symptoms came back over 6 month period and I was just a sick as before and I did not herx on the antibiotics anymore.

These are doxycycline and azithromycine.

Then I was put on pulse-dosing of Ceftriaxon IV. It cured my joint issues and paranoia. But my bacillary angiomas exploded. (Ceftriaxon is not intracellular and pushes Bart deeper into the cells).

The pulse dosing did not help Bart symptoms. No real improvement over 20 weeks. After 10 rounds the Bartonella symptoms did not respond to the Ceftriaxon anymore.

The doctor put me on bactrim after 20 weeks of pulse dosing but I am allergic to one of the antibiotics that is in this medicine.

Then he tried minocycline which did not work for the infection (just as doxy stopped working) and gave me intracranial pressure as a side effect (very bad headache, vague feeling in the head and vertigo).

Then I was put on ciprofloxacin 2 weeks ago. It gave me hallucinations and severe depression (side-effects). After a week I developed numb spots on my hands so I had to stop this toxic waste (LOL, this was the worst antibiotic I was on)

I was on Rifampin, causing 90% improvement of my symptoms very fast. Then I developed liver enzyme rise. After quiting and letting liver recover even small doses of 150mg triggered these symptoms so Rifampin is no option. Doctor is reluctant to prescribe Rifabutin (synthethic variant of Rifampin with less liver issues).

In two weeks I see my doctor. I guess only trimethoprim without the other drugs in bactrim with Rifabutin is left to try. (Trimethoprim is part of the combo in Bactrim but when there is an allergy it is most of the times the other antibiotic and Trimethoprim is tolerated).

At this point these are the last oral options for Bartonella.

My symptoms are strange headaches, neuropathies, insomnia, fatigue, subtle concentration and memory problems, unable to function on high level, bacillary angiomas on my back, some mild gut problems.

My Bartonella has fully returned and is resistant to most antibiotics thanks to 'Lyme' doctors.

It is my opinion that Lyme doctors are to focused on just Lyme. The information that Bartonella and protozoa play a much more significant role must be told and that both protozoa and Bartonella become rapidly resistant.

If I was not pulse treated but directly managed for Bartonella (I got in the office with a swollen lymphe node behind my ear and told the doctor I had a cat scratch and a tickbite before my symptoms started) It was acute Bartonella... My antibodies for Bartonella where sky-high... If he just started treating me for Bartonella with Rifampin and Clarithromycine the way doctor Mozayeni does and find out I cannot tolerate Rifampin and switch that for Ribabutin... I would have been cured 3 years ago.

Instead, he made my Bart treatment resistant by treating for Lyme with pulse-regimen. Thanks to good research we now know treating with bacteriostatics in a pulse regimen doesn't work... only bactericidals and it doesn't cover the biofilms...

Imagine, I get bitten by a tick and that tick gets infected with my Super Bart... darn, the world would be ****ed...

I must add that I tried alternative therapies: colloidal silver which did nothing, Ozone 10-pass in Germany which did nothing, Buhner herbals didn't work but Japanese Knotweed and Cordyceps keep the inflammation down so I take that but it doesn't cure... the Buhner kill-herbs didn't work for me and Cowden doesn't work either.

Next to the antibiotics I always take (separated):

nutritional:
- Multivitamine
- Multimineral
- Zinc

gut:
- Curcumin
- Lactoferrin
- Different high dosed probiotics

biofilm:
- Serrapeptase
- Nattokinase

oxidative stress:
- CoQ10
- Liposomal vitC
- Vitamin E
- S-Acetyl-L-Glutathione

detox:
- Methyl B12 and methyl folate
- NAC
- Alpha Lipoic Acid
- Milk Thistle

inflammation:
- Japanese Knotweed
- Cordyceps

I think both doctor H and doctor M are two of the best doctors currently practicing. Unfortunately I don't have that kind of money to see them. If I knew about them in 2013 when I crashed, I would have been able to visit them... spent more than 50k on treatment and am dead broke now.

I have worked on my mental state as well as spiritual state of being. Because of growth in these areas the infection has different impact on my biological state of being. But I still live with it and it is not fun.

Because I wanted to contribute in a way that I did before illness in the music studio I started this website.

I am maybe less open minded to herbal treatments, homeopathy and other alternatives because of my personal lack of response to these treatments. I do however take a considerable amount of supplements that do help managing but for how long can I continue this? I was financially stable with lots of savings for my age... but they are all gone and I am living from a low income and unable to work or function.

Despite going to a LLMD just weeks after my Bartonella infection and tickbite he didn't cure me and made things worse over time.

I only respect a small group of Lyme doctors like doctor H, doctor M and a hand full of specialists on Europe.

I have heard of to many doctors treating with 'ILADS' protocols who do crazy things like give Rifampin as mono-therapy... well. The more reason to create this website and make information accessible and understandable for the less informed fellows.

Post Edited (LymeBasics) : 9/24/2017 3:30:58 AM (GMT-6)

"I still have Bartonella. I was not positive for Babesia."

You do realize testing isn't reliable/accurate. You may indeed have Babesia that is holding you back from healing.
Dr. J (one of the best LLMD's in the U.S.) treats everyone for Babesia - early on.


"The Lyme doctors working in my country are not really familiar with Bartonella. They didn't understand it becomes resistant against antibiotics. "

Not sure if bartonella becomes resistant to abx. Dr. J. doesn't believe so. This is one reason why mono therapy isn't done...so the bacteria don't develop resistance.



"These are doxycycline and azithromycine."

Those aren't sufficient to treat Bartonella. (Maybe an early infection only....but not chronic)

"Then I was put on pulse-dosing of Ceftriaxon IV. It cured my joint issues and paranoia. But my bacillary angiomas exploded. (Ceftriaxon is not intracellular and pushes Bart deeper into the cells).

The pulse dosing did not help Bart symptoms. No real improvement over 20 weeks. After 10 rounds the Bartonella symptoms did not respond to the Ceftriaxon anymore. "

Again - not the right antibiotic for Bartonella.



"Then he tried minocycline which did not work for the infection (just as doxy stopped working) and gave me intracranial pressure as a side effect (very bad headache, vague feeling in the head and vertigo). "

Same as what I stated above.

"Then I was put on ciprofloxacin 2 weeks ago. It gave me hallucinations and severe depression (side-effects). After a week I developed numb spots on my hands so I had to stop this toxic waste (LOL, this was the worst antibiotic I was on)"

Fluoroquinolones are effective...but risky - with the black-box warnings.

"I was on Rifampin, causing 90% improvement of my symptoms very fast. Then I developed liver enzyme rise. After quiting and letting liver recover even small doses of 150mg triggered these symptoms so Rifampin is no option. Doctor is reluctant to prescribe Rifabutin (synthethic variant of Rifampin with less liver issues). "

Why is he reluctant to prescribe Rifabutin?

"In two weeks I see my doctor. I guess only trimethoprim without the other drugs in bactrim with Rifabutin is left to try. (Trimethoprim is part of the combo in Bactrim but when there is an allergy it is most of the times the other antibiotic and Trimethoprim is tolerated). "

Why not combine another antibiotic with the Rifabutin? You can take azithromycin, biaxin or doxy with it.

"I did have two antibiotics for Bartonella, doxy and azithro but despite double antibiotics it got resistant for both. As I don't respond to these anymore. "


What I said was those two weren't sufficient to treat chronic bart. (in most cases)

(Rifampin,Rifabutin, or a fluoroquinolone is needed)


I'm not doubting your bart infection...but untreated Babesia could be holding back your healing.

"I don't have Babesia. I was tested PCR, blood smear, LTT, antibodies and urine-PCR... no Babesia. "

If only testing were accurate...but it's not. This is why Dr. J (one of THE best LLMD's in the U.S.) treats all patients for Babesia.

" Bartonella is rapid resistant to antibiotics. Been proven in laboratory by microbiologists and shared recently in a lecture by Burrascano in Antwerp."

Do you have any articles I could read...because that's not what I'm reading/hearing.
Persisters, yes....(but not necessarily resistance)

Persistence is of course something different than resistance. Bartonella has no spores but it has genes that make it capable of shutting down its own metabolism. This is where rifampin and dapsone & pza come into play.

Bartonella is not sensitive to metronidazol or tinidazol because it has not the right bacterial enzymes to convert these drugs into active compounds.

To differentiate between persistence and resistance is: improvement with plateau. worsening with improvement after the worsening (and then plateau) change of symptoms (because dormant forms have different antigen expression, or little antigen expression at all)

Resistance: no improvement at all.

I think very intelligent LLMD's have even better models for this but I cannot afford seeing a brilliant Lyme-doc.

BArt actually hates ascorbic acid and responds well to vitamin C therapy.

I would HIGHLY recommend finding some place that does IV ascorbic acid. Bart live in the blood vessels and the IV AA delivers the AA directly to the source of the infection.

meanwhile get some vitamin C and ramp up your intake till bowel tolerance. just keep taking more each day until you have intestinal discomfort, then back down.

really hope you get better.

another thing to look into is DMSO, since it disable bacteria's quorum sensing and makes them more vulnerable It is also an amazing anti inflammatory. i have a thread here on it, check it out for more info.

also check out rife machines, but they are expensive. But the rife DNA freqs WILL kill bart.