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Babesia, Bartonella and Lyme 2016

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Posted 5/12/2016 7:14 PM (GMT 0)
Hello!

On May 1st started a new protocol:

1 week diflucan 100mg x 2
Nystatin 500000 x 2 daily
Malarone 250 x 2 daily
Bactrim ds 850 x 2 daily
Minocycline 100mg x 2 daily

L arginine 2000mg
CSA from woodlandessence 60 drops
Houttuynia 30 drops

Florastor (awesome) 250 x 2
Ultimate Flora 30 billion mix
Vitamin c 1000
Glutathione reduced 500mg x 2

The predominate symptoms at start:
Abnormally high BP 150/100
Sweats - day and night.
Air hunger cyclic and intense
Profound fatigue
Cognitive dysfunction
POTS like syndrome
Flares of muscle and joint pain way outside normal
Anxiety and panic not previously present
Sound sensitivity
Mood fluctuations outside of previous base levels
Occasional throat paralysis - pills hard to swallow, sometimes unabke to clear mucous

Being fearful of adding too much at once i started the bactrim and diflucan firstand continied on the mino and csa that i had been taking previously

Muscle twitching jumoed out of control soon after. But there was a general feeling that something had been paused in the illness

After 3 days, malarone added as courage was finally present

By may 5 or 6th sweating and air hunger dropped by 80%. I am a musician and instead of needing to change my shirt 5 times in a gig i was able to play without the excess sweat

Hunger cravings dissappear dramatically

Around the same time a very clear improvement in visualization of thought and short term memory occured

By may 7thish im feeling miracle

Added houttuynia with noticeable twitching hrs after first dose

Day 8 and 9 air hungerand sweats return about half as bad with noticeable increase muscle pain

Day ten profound fatigue sleeping 16 hours. Fogging in the brain pipes

Day 11 cancel show for rest. Body is heavy.

Day 12 (today) sweats down to 25 % of start. Fatigue still high but much better.

Im am posting this as insight and for insight. I hope you heal well

Love,
J3cpo
Posted 5/12/2016 7:21 PM (GMT 0)
Ashwagandha was added around day 4.

BP returned to normal range fairly quickly

Anxiety 50%. Panic gone

Scheduled to start rifampin in june replacing bactrim
Posted 5/12/2016 7:50 PM (GMT 0)
Welcome to our community, J3cpo - Im sorry you have lyme, but glad you found your way here.

This is a great group of like-minded people - lots of support and knowledge here.

Since you are new, it would be helpful for you to read through the "New to Lyme?..Start Here!" thread at the top of the page. Lots of great information in that thread.
Posted 5/12/2016 7:56 PM (GMT 0)
Welcome J3cpo. Make sure you make a journal. It is so nice to have all this information written down. I love looking back and seeing my improvements.
Posted 5/12/2016 7:56 PM (GMT 0)
Hi J3cpo

Welcome to the forum! Please check out the "New to lyme?" thread at the top of the page - has a ton of great info. We also have great moderators here who will likely be along soon to officially welcome you - they are also a great resource.

Thanks for posting your protocol and progress. It caught my eye because those are the 3 coinfections I am currently treating and I've had very similar symptoms, although our protocols are a little different.

Sounds like you're making good process so far!

What are you doing for detox? Detoxing is AS important as hitting the infection so you need to be able to flush and detox what you're killing as fast as you're killing it or the toxins can often complicate your treatment with confusing symptoms and toxic effects.

Also - have you been tested for viruses?

-p
Posted 5/12/2016 7:57 PM (GMT 0)
Thank you Girlie!
I have lurked here for years and it has helped. I decided that it was unfair to ise the resource without making my experience a public part of it.

Lyme since 90s
Bart and Babs active for about 2 or 3 years

New treatment is he first to address lyme AND coinfections.

I owe this to the knowledge on these forums and the fortunate ability to just barely afford good drs
Posted 5/12/2016 8:02 PM (GMT 0)
Pirouette

I have decided to make this place my journal so that others may benefit from knowing whatever it produces.

Do you mind sharing your protocol and experience in this thread? I would greatly appreciate your perspective


Edit: also glutathione is the only thing ive added for detox so far. Outside of drinking huge amounts of h20 and swimming in the seawater out back of our house
Posted 5/12/2016 8:02 PM (GMT 0)
Well, I'm glad you decided to introduce yourself.

It seems like the Malarone worked rather quickly for you...that is awesome..
Posted 5/12/2016 8:08 PM (GMT 0)
Girlie

I am certainly hoping that the initial bounce was malarone related. I am unsure how babesia treatment plays out.

It was upsetting to fall back down so quickly

But im new to babesia treatment and didnt/dont know what to expect as there are few resources detailing the experience!
Posted 5/12/2016 9:27 PM (GMT 0)
Hi J3cpo -

I was likely infected w/ lyme & co over 18 yrs ago. I didn't start treatment until 2 yrs ago. My LLMD started me off with an antiviral and anti fungal treatment for a couple of months to lessen the load on my immune system before starting lyme & co treatment. I also had severe GI issues so my immune system was really struggling and it was also helpful to heal the GI as much as possible.

I first started with Byron White AL-Complex and had no reactions at all. Then several weeks later I added A-Bart and the bart symptoms flared so that was a pretty good sign that I was hitting the infection. Then I added A-Babs and again, had very clear reactions. So I then had an IV installed for Rocephin/ceftriaxone for the lyme. The first 4-5 wks on R/c were pretty brutal as it was crossing the blood-brain barrier but I was finally able to walk again (I was nearly wheel-chair bound with hip and knee joint pain).

I've stayed on the R/c for 16 months and for various reasons have gone off/on the other antimicrobial herbs. The port has shifted out of place a bit and the catheter has subsequently slid further into my heart, agitating it a bit. Until we figured this out I had to stop the protocol, go see a cardiologist, investigate a few more things with a neurologist including seizures and vertigo. Then I started slowly reincorporating everything back into my protocol.

But a pattern soon became evident when I started up the A-bart again, as it was now clearer it was the catalyst for these GI attacks (or more accurately, stirring up the bart in my gut). So my LLMD quickly put me on IV vancomycin, which relieved the vise I've felt around my torso for 6 yrs now--within 15 minutes of the first dose. I've also had a ton of lymph activity from the vancomycin. It has been a rough several weeks since I started it but it is definitely hitting the infection.

So at this point, I haven't yet reincorporated the A-Babs but that is probably next month. I also haven't checked for other coinfections yet but hopefully we're targeting the bulk of my issues with the lyme, bart & babs.

Other:
cistus incanus tea (cyst lyme form)
pure Nystatin powder (yeast/fungus)
Low dose naltrexone (neuro pain/spasms)
400 billion probiotic
Beyond Balance IMN-V-II (antiviral)
Acyclovir (antiviral--as needed)
Ursodiol (gall bladder)
Naturethroid (thyroid)

Detox:
cocktail of milk thistle seed & burdock root (liver), pinella & bur bur (brain), red root (lymph), parsley
japanese knotweed
alka seltzer gold
pure cholestyramine + bentonite clay binder
L-5-MTHF
I ride my bike when I can

-p
Posted 5/13/2016 4:47 AM (GMT 0)
darn P that's some rough stuff!

Glad to hear you are making some progress.

I had issues with my picc line. It would press against something in the heart causing it to flutter or at least feel like it. That symptom was resolved by simply pulling it out a centimeter or so.

I hope the herbals prove effective for you. Im still in the abx camp for now. Last flare up scared the crape out of me and previous rifampin and tinidazole, biaxin treatment showed clear results. Stopped too soon. 2 or 3 months.
Posted 5/13/2016 6:12 AM (GMT 0)
Yes - that is one advantage the PICC has over a port. You can't adjust the port. Both the cardiologist (who was awful) and the surgeon who installed the port thought it was ridiculous for me to suggest that the catheter was agitating my heart, causing the heart symptoms. But that's exactly what is going on and others who have IVs installed have agreed. Glad the MDs are on top of things...

My theory is that the pocket of tissue that was supposed to form around the port to hold it in its place didn't really heal properly - either due to the lyme or because I was moving around too much and didn't allow it to heal. I was also incredibly sore and swollen for 4 months, when they told me it would be for 2 wks. Of course, this meant when the nurses came to access me, which was painful, after awhile they assumed it was psychosomatic so I had to deal with all that nonsense.

Because of the heart issues and some issues with being able to infuse and draw blood, the surgeon did imaging and could see for himself that it had shifted about an inch towards my clavicle, so the tip of the catheter was an inch lower--considerable shift. Plus I think the catheter is too long - I have a pretty short torso. The only solution was to remove the port, let it heal for 8 wks, then install a new one and let that heal for 8 wks. And since the "2 wk" healing period from these procedures actually took me about 4 months the first time around, I opted to leave it in and deal with the issues.

Anyway, thankfully, all the drama has finally calmed down. Mostly.

I am counting on the herbals too! I'm OK with the protocol so far but really would like to get to the herbs ASAP. I have a tendency to push myself too hard, too fast, too much and I have lots of problems detoxing so once I finally figured this out and slowed down, progress has improved but at this rate I'll be treating for the next 5 yrs. It's very frustrating.

The flares can be so scary - especially when you're starting out. The good thing for you is that you had "clear results" before, that is a good sign, good information and you'll likely be ale to achieve good results again. Some people spend a lot of time and money trying to figure out what works for them.

BTW - would you mind if I emailed you about something? If not, just update your profile with an email address.

Thanks -

-p
Posted 5/13/2016 3:19 PM (GMT 0)
~p
Send away




Day 12 evening - day 13 morning. Improvement on fatique. Sweats gone again. Anxiety fairly level. Muscle pain and joint pain up a bit. No panic. Interesting new symptom of a thought or song or phrase getting stuck on repeat occasionally in the mind. Kind of neat. Non threatening.


So far im going to have to assume that the increased pain and fatigue are some type of overload or herx. Overall the quality of life seems to have improved since adding bactrim and malarone. Hopeful
Posted 5/13/2016 4:13 PM (GMT 0)
Yes, I believe you are correct in assuming that is a herx.
Posted 5/13/2016 7:44 PM (GMT 0)
Jc3po

A belated welcome :)

While keeping a journal is a very useful tool when dealing with these infections, I thought you might want to know that we can't let threads go past 3 pages. Otherwise, our server bogs down.

That said, you can obviously save links to your threads and start each subsequent thread with a link to the previous one.

Best wishes as you move forward!
Posted 5/13/2016 7:58 PM (GMT 0)
A comment made by Denise(?) on another thread made me think of the need to pay close attention to your reactions to treatment.

A "manageable herx" is the best kind--it produces just enough noticeable symptoms so that you're getting feedback and information about them that indicate what abx rx/herbs are hitting the infection and causing die off and what might not be working, what is causing allergic reactions and what detox protocols are or are not effective.

So that's critical information and can change over time--our bodies are a dynamic landscape and as we continue treating, the impact on the infection is constantly changing so sometimes it's necessary to step back and evaluate.

But not TOO much herxing that indicates too much impact on your body (due to too hard drugs, doses that are too high, a combination of drugs/herbs that are too overwhelming) that your immune system and or detox systems can't handle what you're killing off. Too much herxing can burden your immune system, adrenals to the point that you get even more run down and overwhelmed.

This opens the door for the infections to get a foothold and dominate the immune system. NO amount of herbs or drugs can heal us w/out the support of our immune systems so you want to be careful not to send your body into crisis.

So balance is key... steady eddy. The cycle you want is:
kill, flush, rebalance, support.

-p
Posted 5/23/2016 6:55 PM (GMT 0)
So this last week has been up and down. Seems like bad days come in clusters of about 48 hrs every 5 days or so.

Today hip pain, fatigue and a slight bit of air hunger.
Mild anxiety above base level

Overall improvement in quality of life. Instead of mepron blues, i feel more optimistic. Although the fatique is higher today, it is greatly improved over all.

Went to a party for a few hrs last night and was able to be fairly present. This is a remarkable improvement over the hell that usually accompanies this disease in social situations. Dont worry, no alcohol.

No panic attack. Just slightly ellevated, manageable anxiety that would be expected after months of avoiding public gatherings. Living in beds and couches.

That said, im on a couch now. But will be playing a show tonight.

Malarone, bactrim and minocycline with pulsed artemisinin seem to be having positive results.

Csa and houttuynia are being continued as well.

Looks like pirouette is right about ramping up detox methods
Posted 5/23/2016 7:00 PM (GMT 0)
I shoukd mention that due to the fear of running out of malarone ive been searching alternative methods of keeping babs at bay (until i can find a reliable friggin source)

What ive seen here in TF's posts have given me some hope that bactrim and art pulses may do the trick for now. Thank you TF. THANKS ALL OF YOU
Posted 5/23/2016 7:22 PM (GMT 0)

J3cpo said...
I shoukd mention that due to the fear of running out of malarone ive been searching alternative methods of keeping babs at bay (until i can find a reliable friggin source)

What ive seen here in TF's posts have given me some hope that bactrim and art pulses may do the trick for now. Thank you TF. THANKS ALL OF YOU

CSA should help too.
Posted 5/24/2016 10:51 AM (GMT 0)

J3cpo said...
I shoukd mention that due to the fear of running out of malarone ive been searching alternative methods of keeping babs at bay (until i can find a reliable friggin source)

What ive seen here in TF's posts have given me some hope that bactrim and art pulses may do the trick for now. Thank you TF. THANKS ALL OF YOU


Hey J3cpo, or anyone else..... have you found a place to buy Malarone without a script??? ....that's reliable and priced reasonably?
Posted 5/24/2016 5:43 PM (GMT 0)

TOOTY said...



Hey J3cpo, or anyone else..... have you found a place to buy Malarone without a script??? ....that's reliable and priced reasonably?



I'm interested in this.
Posted 5/24/2016 5:54 PM (GMT 0)
Tooty - please email me. Click the envelope icon beneath my screen name. Girlie - I will copy you with my response.

-p
Posted 5/24/2016 6:30 PM (GMT 0)
thanks P. :-)
Posted 5/25/2016 12:58 AM (GMT 0)

Pirouette said...
Tooty - please email me. Click the envelope icon beneath my screen name. Girlie - I will copy you with my response.

-p


Pirouette, I emailed you at the address you have listed. I hope it went through.
Posted 5/25/2016 5:45 PM (GMT 0)
Girlie and Pirouette, I set up a new email account with healingwell.net and I'm having some trouble with it. I even had a security threat already, so I may have to close the account. I will try to email you with another email address.

Thanks for your understanding. I am trying to make contact with you.
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