Circulation/Varicose problems ever since Bart Dx in 2018

Hi, sorry to hear you are having these issues - the symptoms you describe match very well what is known about Bartonella in both the scientific literature and the LLMD community.

the ultimate treatment is to treat the Bartonella infection

it is very tenacious and notoriously difficult to eradicate for most people with Lyme - most approaches favor multiple intracellular antibiotics for 6mnth to 1 year or more - eg doxycycline, rifampicin, clarithromycin ( or other combos )

however, the treatment itself is arduous and many people are unable to tolerate it long enough to resolve the infection or relapse afterward - as you may have discovered/experienced

there are then alternative therapies that attempt to find a route around this problem - eg herbs, rifing etc and some people do seem to get better with these approaches.

research is ongoing and some new drug candidates are coming to light - but availability is limited and more research is needed.

the immunosuppressive features of Bartonella ( perhaps especially if combined with Lyme and others ) seem to be one of the biggest factors causing the difficulty in resolving the infection so many people benefit from immune-modulating therapies (a wide spectrum of approaches from yoga and meditation to exercise, immune regulating herbs and some drugs ) personally i have found a gradual introduction of immune modulating herbs to help me considerably.

Bartonella species are known to ( amongst many other things )
-infect the cells that line blood vessels causing damage, poor circulation, and often high cholesterol
-cause particular damage to the circulatory system - especially microcirculation deficits but also occasional larger thrombosis or blockages
- cause high fibrin deposits through the circulation system - limiting nutrient absorption and toxin excretion from cells and thereby reduce general function
- cause auto-immunity
- cause generalized pain syndromes

the only full solution is to treat the infection - but that can be a slow and difficult process as mentioned

i wish it were different - but this is the reality we are finding - a lot of people on this forum are in a very similar situation and are forced to follow a path of learning and then trial and error to find what works best for them) - some self-treat and others through a qualified LLMD - but you are certainly not alone in what you are experiencing.

some things that may help in the meantime
herbs such as
Dan Shen / red sage root
Japanese Knotweed root
both help protect endothelial cells and are generally v safe to use
red sage also helps modulate the immune system and Japanese knotweed lowers inflammation generally ( inflammation drives a lot of the symptoms we suffer)

fibrinolytic enzymes can help break down the fibrin deposits and improve symptoms

the most specific is nattokinase as it acts mainly on fibrin and does not affect other blood chemistry much.
but can cause symptoms flares as toxins are released into the system if too much is taken too soon - so generally wise to start with low doses and work up

hang in there - decide on your path forward and be sure to stick to it long enough to get meaningful results or lessons - then move on.

maybe list what you have tried so far - ABX? Herbs ? others? and what you experienced

lost of people here will offer support and advice on specifics

For Lyme (and the coinfections I had with it in 2014) I did:

Rifampin, monocycline, tindamax, plaquenil, and azithromycin for 15 months until I quit all of them from getting beyond sick and nearly-suicidal depressed from them.

Then I went onto rife, herbs and homeopathics that helped way more in a few short months than the abx ever did. All the abx did was give me a consistent Candida infection I still have on and off to this day.

For Bart in 2018 I did Clarithromycin and azithromycin for somewhere around 3-6 months and a silver nose spray for the staph marcons I was diagnosed with in my nose. The nose got better but again the abx didn’t do much at all.

Went back to herbs,homeopathics, and rifing and got some relief. Had a lot of relief this year in January when I did a detox program and went paleo. Quit paleo in March due to the quarantine being so difficult and went back to just GF. We also had a decent sized earthquake that’s caused major anxiety and stress for me too and I moved twice over the summer.
PS I’ve seen mostly every LLMD in Utah and don’t have much desire to see another one. Never have felt much better with any of them.
Just my lady who does frequencies and this guy I’ve seen for herbs have been my only help.

The veins and getting over sicknesses (For example been sick on and off over the last week with an on and off sore throat and it’s woken up the vein issues more and other Bart/Lyme symptoms) and getting my lymph to drain and liver to detox has been my hardest battle. My cycle has also been weird and lighter and I now have PCOS I never had before all this. I’m underweight and typically have people disbelieve I have thyroid issues and PCOS issues. Yet I do.

I would like to treat this on my own with the advice of others as too why I reached out.

I see a neurologist next week for the VAD and saw him a few months ago. He didn’t seem concerned about the vein pain and he doesn’t focus on veins to much just mostly brains and strokes.

I could try and bring it up again.

I've noticed the vein on both inner ankles has grown in size over the past year and I have some pain. Did a veinous ultrasound and came back normal...trying to figure out next steps now.

a few additional things that can help with circulation issues - esp those related to Bart.

Hawthorn (berry or leaf) -improves circulation, protects blood vessels, and in particular, protects the heart ( buhner) - many with Lyme find benefits

Red Root - improves Lymph flow and protects the spleen ( again Buhner)

Nattokinase - as already mentioned - specifically for excessive fibrin/fibrinogen issues ( various LLMD's )

L-Arginine - seems to protect and even reverse various functions of Bart infection - but also studies show it is effective for improving Cardiovascular disease markers, and benefits many vascular conditions, liver markers, ( possibly by upregulating Nitric Oxide production)

also Diet - this was huge for me - and should be at the top of any such list in terms of the difference it can make - especially if you have not already overhauled this area of your regime ( more difference than any herb, potion, or supplement in my experience of myself and others I know with this disease)

all of the following increase inflammation and encourage damage to the circulation system:
all sources of inflammation contribute to the load on our system while making life easier for the microbes - thereby adding a double whammy to the equation in favor of the bugs.

-typical western diet sugar intake ( high blood sugar cause damage to the cells lining the blood vessels)

-typical western diet carbohydrate intake ( same as above)

-Typical western diet processed oils intake ( industrially produced seed oils cause damage to the same cells
and widespread low-level inflammation - eg peanut/groundnut oil, sunflower oil, corn oil, rapeseed oil etc etc )

i know i must sound kind of evangelical and perhaps even critical of anyone with Lyme who has not really overhauled their diet - but believe me, i know how hard it is to change and understand its often one of the few areas left where we feel we can have some enjoyment and treats.

But i just really want to pass on how much help it can be - and also assure you that you soon adjust and no longer see it as a sacrifice but a kindness to yourself.

Sounds so much like me!!! Sometimes I get POTS like symptoms not all the time though.
I have started back on Japanese Knotweed and SOD actually for circulation. It seems to be helping. My VAD is completely healed and my neurologist does think I got circ issues just not sure what. Said I could ask my primary about it or go see a vein doc. I’m really chalking this up to Bart though!

Are they doing a lab test? DNA connections confirmed mine 2 years ago

Regular lab testing is awful For Lyme and Co. I had a positive igenex for Lyme and negative for Lyme with regular blood testing. If you can find someone to do it with igenex or dna connexions I’d definitely pay the money and go more that route. It’s helped me so much. DNA connexions checks for many of the co infections too

Savedbygrace12 said...
Regular lab testing is awful For Lyme and Co. I had a positive igenex for Lyme and negative for Lyme with regular blood testing. If you can find someone to do it with igenex or dna connexions I’d definitely pay the money and go more that route. It’s helped me so much. DNA connexions checks for many of the co infections too

If you dont mind me asking I saw you wrote staph marcons. What were all your symptoms or were you unaware you had it?

UAZip05 said...
I've noticed the vein on both inner ankles has grown in size over the past year and I have some pain. Did a veinous ultrasound and came back normal...trying to figure out next steps now.

I can relate and if testing is coming bk normal with no other explaination then you must think bart mold and hidden illnesses I would think it's bart causing it sounds a lot like me I get these burning sensations throughout body almost like when u put one of those icy hot patches on when u hv back pain!

Oh my goodness MedicalNerd I’m so sorry!!! I do understand what you’ve felt though and just FYInthr antibiotics didn’t help me much and nearly killed me. So trust me they’re not all they’re cracked up to be.

Labcorp did mostly all my co-infections. The pricing wasn’t horrific either and you can do payment plans with them. Lyme, Bart, and Staph Marcons were all done by a different lab(s) though. Which I’m so grateful for.

That’s awesome Buhners protocol saved you. It’s got amazing stuff in it. It’s helped me a lot too.