Regressing or healing?

The whole body itching after the Epsom salt bath makes me wonder if she has MCAS.

What is her current treatment?

I feel like your daughter is on a pretty good/aggressive protocol. She’s covered for all three B’s. Some of her symptoms to me sound very bartonella especially the gi stuff. I also think these infections shift in dominance. You can re-herx on the same protocol if one pathogen becomes more dominant as you work away at them. Otherwise, hang in there, it could just be a herx if you’ve made progress with one pathogen, maybe you’ve started hitting something else a little more.

Blakelysmom,

I agree the whole body itching sounds like MCAS. MCAS can occur from toxic overload, which can make a person feel absolutely horrific.

You said:
“She had started taking supplements for the MTHFR but didn’t start slowly (didn’t know to) and I read that it could cause too much detoxing all at once which could make her feel worse. OR it could be Lyme toxin illness where she isn’t able to detox enough and is reabsorbing toxins.”

I have also heard that about the MTHFR supplements. Did her LLMD prescribe these? I would probably stop the new supplements and notify the doctor. Supplementing based on genetic testing can be tricky from my understanding and if done wrong or out of order, it can create more problems than it solves. Georgia Hunter may be able to give you some insight on this.

You mentioned these supplements. Which of these are new?

probiotics, methyl protect, specific vitamins for MTHFR, cordyceps, l-theanine, th1support, NAC, glutathione, milk thistle, vit d, etc

I’ve wondered too if we need to do more for bartonella. I plan to ask at next appt.

After reading about MCAS it sure does sound like a possibility. I started her on curcumin thinking it might help inflammation. I may add Zyrtec to see if any effect.

The MTHFR vitamins and the methyl protect were LLMD recommendations which my daughter began taking mid August. Those are the only new supplements except for the transfer factor which we were trying out, also based on LLMD recommendation. I don’t know what’s causing what though.

She is taking no binders at all. That has never been mentioned but makes sense she would benefit from that!

She does sometimes have sluggish bowels. But always feels better after she goes. I know SHE would be totally against trying enemas 😱😆 but I could give her laxatives. Recommendations?

Dr did recommend trying antibiotic break 2 weeks off. We made it one week before tingling and other head symptoms got bad. I called dr and she said to go back on antibiotics for a month and then try a one week break. We’re due to try that this upcoming week. I *thought* the return of the tingling back in August was bc of being off antibiotics but here we have it again while still on abx.

My gut feeling is that she is just so toxic. Any little thing sets off horrible reactions. I posted before about one drop of cryptolepis causing severe reaction.

My thoughts can’t help but go back to her infancy/childhood when she did not have Lyme...she has always had weird “spells” of vertigo, strange neuro things, other symptoms doctors say are all benign. I’ve always thought since it started at 2 weeks old and reignited each time after vaccines, that it was possible she couldn’t handle toxins from that. She would always get over the spells in a few weeks and would go long periods of time as normal as could be. They thought she was allergic to dairy as she would react to that many times. I wonder now if maybe we need to test for heavy metals.
I’ve gone off in a tangent now. Sorry. Trying to piece all this together.
I so appreciate all the input.

“Minocycline and bactrim are among the few drugs that bartonella is usually not resistant to. If the bartonella infection is resistant to these, you've got a really big problem.”

Just an FYI - Rifampin and Rifabutin are considered to be 2nd best pharmas for (after the fluoroquinolones) for Bart by many (most?) LLMD’s.

My LLMD is one of the best - and has been practicing for many years.
He prescribes Rifabutin.

HeartsinPain said...
I feel so truly sorry for you and your daughter. She sounds a lot like my sister who has fibromyalgia and possible Lyme along with many other issues. Does your daughter use a sauna? That has been one of the biggest helps for me and my twin, I highly recommend you find a gym or spa that offers one. Best of luck and please keep us all updated.

Girlie how long would you recommend Rifampin for Bart, I was on antibiotic treatment for six months and then added in Rifampin along with Mino and Flagyl for three months. I’m now on the full Cowden protocol for nine months. Do you think I’ll need to do antibiotics again in the future to completely get rid of the Bart? Ty

I’ve read that Bart needs to be treated minimum 4-6 months.

(But many of us are treating longer - much longer than that)

At some point the Cowden protocol addresses bart - right?
Hopefully sooner than later... you don’t want to lose any progress made with the three months bart treatment.

Cowden may address bart partially but it never fully got rid of mine...well, unless I got infected with it again, which is very possible. The Cowden/Nutramedix herbs are about 4x less powerful than Woodland Essence though. 1:5 vs 1:20 or so

ElizKA - you are/will be getting liver (and kidney) function tests monthly, right?

We have not tried a sauna. I would have to purchase one bc my daughter goes nowhere except dr appts she has to go to. Otherwise too sick to leave the house.
I have read about them but would love for someone to just say “buy this one. It’s great”😊

I have stopped the methyl protect and the MTHFR multivitamin and will see how she does. I added up the dosage she was taking with those and it was near 2500 mcg daily of the 5-MTHF. What I read on treat Lyme website says start at 400 mcg daily and work up slowly by the week. Man, wish we’d have been given a heads up that it could be a problem. Never thought a multivitamin would also be an issue. 🤷‍♀️
So, now I’m confused if this condition should be treated or what? Or just have to be more careful with how it’s treated? Makes me question the LLMD somewhat.

No, I asked. They just said call back in a few mos. to see if that's changed.

I'll ask my new one on Monday. They aren't terrible but just not seemingly informed as my last LLMD. But asking for a liver and kidney panel.

Blakeleysmom said...

My gut feeling is that she is just so toxic. Any little thing sets off horrible reactions. I posted before about one drop of cryptolepis causing severe reaction.

My thoughts can’t help but go back to her infancy/childhood when she did not have Lyme...she has always had weird “spells” of vertigo, strange neuro things, other symptoms doctors say are all benign. I’ve always thought since it started at 2 weeks old and reignited each time after vaccines, that it was possible she couldn’t handle toxins from that. She would always get over the spells in a few weeks and would go long periods of time as normal as could be. They thought she was allergic to dairy as she would react to that many times. I wonder now if maybe we need to test for heavy metals.
I’ve gone off in a tangent now. Sorry. Trying to piece all this together.
I so appreciate all the input.

Not a tangent. You’re onto something.

It’s NOT all about the infections. It’s all about our bodies and how they handle the infectious organisms as well as the alterations they cause in how our bodies function.

Dr. Neil Nathan is a very respected doctor who specializes in figuring out what to do with the overly sensitive and overly toxic Lyme/mold patients. I’ve heard his latest book, “Toxic” is very good and informative. You might want to pick up a copy.

Have you talked to her LLMD about this medical history you remember and the relationship to vaccines and your thinking of heavy metals? Lyme doctors should at least be aware of these things even if they are not proficient at treating it. I would think he’s aware of something if she’s on MTHFR supplements.

I would definitely look into testing for heavy metals. HOWEVER, most docs will do a DMSA (or other drug) challenge test. This challenge test can be very harmful to some patients, and most doctors are either unaware or don’t believe that.

Look into the Andy Cutler protocol to learn more about why challenge tests and many other commonly recommended treatments are harmful for some people. Search Cutler on this forum, and you will find a lot of information. Be aware that the folks who follow his heavy metal chelation protocol are very zealous about it and think his way is the only way. Not sure if Dr. Nathan addressed heavy metals in his book or not or what his opinion is. I’d be interested to know.

I am one of the overly toxic, overly sensitive people. My main driver is mold. IMO, addressing her primary toxicity issue in a safe, effective manner and fixing her detox impairments will likely make her feel much more comfortable and allow treatment to be more effective and tolerable.

You will not learn all you need to from doctors, so you will have to learn more and advocate for her.

Post Edited (WalkingbyFaith) : 9/28/2019 5:33:55 PM (GMT-6)