Need advice on where to go with treatment in the future. Feeling lost. Mold, lyme and co, + HPV vac.

I have really come to a lot of discoveries in the past 6 months that have helped me understand my illness and why I became sick recently. With that being said, let me explain to you what I think happened to me and maybe you could offer up some good advice!

I fell I'll in 2016 with joint pain, joint cracking, heart pain, inflammation, food and environmental sensitivities that I didn't recognize at the time. I got a strange rash in October 2015 and a more clear "bullseye" rash in April 2016. After coming on this forum (Thank you very much ) I sought out an LLND and tested for lyme via Igenex. It was positive and for the most part I have been doing various forms of killing treatments since then. Oral abx, herbs, IV abx, dapsone, seen Dr H in CA associated with Igenex and currently treating with Kim F underneath Dr J in WA DC. I've tested positive for babesia duncani via DNA connexions.

This is where it gets interesting... I dated a girl back in 2014 that said she had HPV. I was scared of it and learned that there is a vaccine for it, so I chose to get the gardasil vaccine in 2014. It turns out there are massive side effects with that vaccine and many gardasil injured people fall ill with very similar symptoms to me. You can read more about it here: https://gardasilsyndrome.com/

The vaccine causes leaky gut, histamine intolerance, pathogen reactivation, mast cell activation, and white blood cells invade the joints, which cause the joint popping (Probably because there are pathogens in the joints from reactivation).

To take it a step further, I was pretty much asymptomatic from my vaccine in August 2014 until November 2015 (I had early morning awakening that developed right around the time of vaccination, so I am sure it was caused by the vaccine and some sort of an important clue). I moved out of my parents house and into an apartment in mid-September 2015, which I suspect had mold because it had a musty smell and a leak from the upstairs bathroom to the downstairs kitchen ceiling. In hindsight, I suspect the strange rash I had in early October 2015 was a lyme rash as well, which means I developed my first sign of lyme disease only 2 weeks after moving into the moldy apartment! I moved out of that apartment in July 2016.

So, what is the root cause? Is it the vaccine? Is it mold? Is it lyme? Bart? Is it leaky gut and histamine intolerance caused by the vaccine, which made me sensitive to the mold in the apartment in the first place? I have never had a sensitivity to mold before this...

Of course the mast cell activation and sensitivities are caused by histamine, and I suspect that the chest pain that I have is related to histamine in some way. It seems to be worse when I am exposed to mold. When I am exposed to mold I get inflammation, pain, chest pain, and brain fog. When I eat foods that I am sensitive to ex: gluten and coffee, I get the same feelings.

I have tested for mycotoxins twice with realtime mycotoxin panel and the first was equivocal for gliotoxin, while the 2nd was negative. I didn't do sauna before the test, but I did do glutathione. Maybe it would be worth repeating...

I haven't noticed a tremendous improvement from abx over the past 2.5 years, so I am questioning if I am on the right path. In fact, while taking bactrim and dapsone, I noticed 1/8" thick ropey tissues developed on my connective tissues near my joints, which I think is some sort of reaction to the antibiotics. This is frustrating as I cannot really find anyone who has experienced this. I wonder if it is related to excess histamine release in the body when the lyme / co infections die caused by the vaccine over sensitizing the immune system.

I wondered if maybe the vaccine caused high heavy metals in the body contributing to my symptoms, but both my challenged urine test and hair test were negative for all metals. Still, I am drinking 1 liter of fiji water per day for the silica to chelate aluminum.

I am considering a detox clinic called Restore + Bio Clinic in St. George, Utah, which uses an advanced form of the patricia cane protocol and 3 colonics per week. I can post the proposed protocol below if anyone is interested. The purpose is to scrub the DNA and remove toxins that block detox and anti inflammatory genes from performing their duty. It's like a deep deep detox clinic. Website: https://restorebioclinic.com/

Right now I am doing the following:

Dr. J babesia protocol
Cholystyramine to bind mold toxins when not taking abx (So 20 days per month)
Zeobind for other toxins
Homoepathic detox for the HPV vaccine
Epsom salt baths
Fiji water
Ketotifen, singular, quercetin, and cromlyn sodium for mast cell activation
Permavite, l glutamine, and butyrate for leaky gut
Various supplements and probiotics
GCMAF cream for the immune system

Thank you, any other questions just let me know!

Girlie said...
If the 2014 vaccine was responsible for your symptoms - wouldn’t you have had symptoms prior to 2015?
Or can they take awhile to show up?

You do have a positive lyme and Babesia test result... but you’ve had little improvements with treatment....

What does your NP say about the vaccine?

Also - how long have you been treating with your NP?
Just wondering if plans are for you to do the Persister protocol after Babs is done.

It takes up to a year to build up a full response to the vaccine, so it's actually very common to see adverse affects after a full year. But, keep in mind I developed the early morning awakening directly during the series of 3 injections over a period of 8 months. It was so bad in the beginning. Like I would sleep for 3 or 4 hours and wake up after dreaming and be all sweaty. I could NEVER fall back asleep either. I would toss and turn for hours then have to get up for work and be exhausted. I wonder if it re-activated dormant babesia, because now during my babesia cycles (on medication) I get disrupted sleep and wake up after 4 hours sweaty! It goes back to normal in my off weeks and I start sleeping better again, so maybe it's histamine maybe it's babesia. I'm not sure. Here is a quote from www.gardasilsyndrome.com :

"Insomnia was present in the majority of the subjects. We attribute this (in part) to the pineal gland possibly being inhibited by cortisol which was released in response to inflammation, including inflammation associated with the newly acquired histamine intolerance. In addition to mitigating Histamine Intolerance, we observed that Low Dose Naltrexone also helped to relieve insomnia, allowing for approximately five hours of uninterrupted sleep."

I will have to go back and look at her clinical notes, but she said that the vaccine was only part of the puzzle. She said I had multiple factors contributing to lyme re-activating in my body and that LBC is the root cause of the illness. She said I had 6 things affecting my immune system during my first appointment. Lets see what they were... 1. The vaccine, 2. the insomnia from the vaccine, 3. High level triathlon training, 4. Mold exposure, 5. Stress from work maybe?, 6. Stress from a new relationship maybe?

I am almost done with my 4th cycle of meds. So about 3.5 months. I fly out to WA DC on 1/6/19

I think she plans on keeping me on some sort of babs protocol and adding in daraprim. Did you go through that? Is that babesia B protocol I hear about?

So you did a couple years of treatment prior to the J clinic.

I see why you’re wondering whether some of your issues could be from the vaccine.
( If you didn’t get good results in 2 years)
If I were you, I would give the J clinic at least a few more months so you know you gave it a fair trial.
See if you get improvements.

Easy ?- you’re not feeling toxic... head pressure... etc?

Sheeks175 said...

Girlie said...
Easy ?- you’re not feeling toxic... head pressure... etc?

I was a few days ago. I was having the early morning awakening sensation that I was describing just this week. It finally broke last night even though I am mid cycle. My mast cell activation was off the charts too. It was miserable, but in terms of upset stomach and amount of pills this protocol is nothing. And it is only 10 days too.

With Dr. H my 2nd protocol was: Biaxin, plaquenil, mepron, alinia (pulsed 3 weeks on 3 off), bicillin injections (2-3 per week), nexus butt rocket suppositories lol, BLT tincture, Zhang HH2, and ADP oregano tablets. That was every day. It was terrible. I think the alinia and mepron were the worst. They made me so nauseated, but then I circled back to a similar protocol right before leaving Dr H and my stomach wasn't upset at all, so that made me suspect it was a herx reaction.

During my follow up appointment with him he said to continue the alinia for 6 more weeks or something, so I was on it for 9 weeks straight. It was vomit city. I bought ginger chews and those really helped.

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So, it sounds like you had an aggressive LLMD prior to the J Clinic. I think the best part of the J Clinic is not taking the meds every single day.......for months. Psychologically, I feel better with the pulsing.
9 weeks of daily Alinia? That sounds harsh.

With the persister protocol, I took Alinia 5 days straight in each 4 week cycle.
He didn't continue with it...even though he extended the persisters for another two cycles. I didn't seem to have a reaction to it.
Then a few days later I looked at my notes...and I did feel better on the week I took Alinia. I had attributed it to the persisters doing some heavy killing...and then feeling better.
So, I prob should have extended that for two more cycles, too.

Although, I've heard that the Alinia we get here isn't very good. It has to be compounded.
I've read here that Alinia makes your pee turn a bright yellow...but mine didn't.

Sheeks175 said...
wow strange! Yes my pee was bright yellow... And other...fluids lol. He was aggressive. Little structure though. He was good, but I wasn't a huge fan of his PA. I love the structure of the JSC. Very methodical and logical. I love the pulsing too. My WBC is higher than ever now. A much needed break for the immune system.

Dr. J 's methods are definitely structured.

Dr.J believes that if we take the abx daily...for many months to years...our immune system is suppressed...that's why the pulsed protocols were designed.
Let your immune system kick in.

Hope you get some improvement with these protocols....and also some answers to your questions.

Find a good kinesologist or learn yourself to see what is the priority. Most sickies have 5-10 pathogens id say all those factors you listed play a part sheeks...i too hand a unexplanable bad bactrim experience which ive never recovered fully from. Building is as essential as killing imho and the patricia kane protocol did help along with iv curcumin. I believe i had sulfa induced vasculitis with nerve damage. Keep us posted sheeks

bluelyme said...
Find a good kinesologist or learn yourself to see what is the priority. Most sickies have 5-10 pathogens id say all those factors you listed play a part sheeks...i too hand a unexplanable bad bactrim experience which ive never recovered fully from. Building is as essential as killing imho and the patricia kane protocol did help along with iv curcumin. I believe i had sulfa induced vasculitis with nerve damage. Keep us posted sheeks

Kinesologist? Is that muscle testing? How much did the PK IVs cost you?

The Dude! It is minimum $12k for me or $800 / day. Here is a description of how it works on the website:

"How the treatment works:
The IV therapies include substances that are able to repair, purify, and rejuvenate your body at the cellular level.
Unfortunately, our world is quite toxic. We are exposed to toxic substances in the air we breathe, the food we eat, the products we use, and in our homes and workplaces.
When toxins enter the body, many are processed by the liver and excreted through the digestive tract.
However, many bodies are unable to get rid of the toxins which end up in body storage.
They are absorbed by the body, down to the cellular level.
Many chemicals and toxins enter the cell and become embedded on your DNA.
Your DNA gene regions tell your body how to function; if there are toxins stuck to your DNA, it cannot tell your body to function properly.
Toxins may be telling your body not to detox properly or how to maintain healthy levels of inflammation.
IV phospholipid therapies are associated with removing environmental toxins from DNA, cleaning mitochondria, supporting the structure of the cell membrane, and encouraging the return of the cell to its healthy state.
A healthy cell with clean DNA will tell your body how to function properly."

Basically they use IV phosphatidylcholine to scrub the cell membrane, clean the DNA, and you do 3 colonics a week to prevent the toxins from recirculating.

They have testimonials on their website and I have reached out to 2 patients that have had good results. I haven't been given contact information directly from the clinic of previous patients. I should push a little more and see if I can get that.

Happy new year to you as well!

i would at least finish Dr. J's babesia protocol that made me feel a bit better.

I've been seeing Dr. J for almost 2 years and he's got no more ideas for me my nerve issues are not responding to anything he's thrown at it so right now I'm doing one week on five weeks off per cycle which is really saying I hope your body needs more time to heal and recover from the bugs.

If you haven't you should see Dr Y in St. Louis and have him check dental and parasite. He is the best at detecting both and usually if you are stuck its the place to start.

“We are doing a 2 week on 2 off protocol with dapsone, daraprim, lactoferrin, xylitol, clindamycin, minocin, augmentin, flagyl, diflucan, enula, cryptolepsis and a 1 day parasite challenge with ivermectin.”

That’s almost identical to my Persister protocol. But mine incorporates Rifabutin for Bart. And instead of augmentin I have Ceftin.

You only take Dap and Daraprim for one week - right?

My week 1 is different than my week 2


I wasn’t given Ivermectin - instead I got Alinia.
I wonder if there’s a reason for doing one over the other.

I have loved my appts with Dr J. I feel I am in good hands with him.

Interesting about the retroviruses.

As most of us know - prior to lyme, Dr J was treating HIV patients and this is where he first started the pulsing meds approach.