Questioning everything

So, after i did the IGXspot test about 6 months ago that came back positive for lyme. I also have a positive igg for m. pneumonia and Babesia. Besides that i haven't tested positive for anything, even with the igenix immunoblot i only got a band 41 slightly positive. So i'm still not fully convinced that lyme is what i am dealing with.

Anyway, been treating with Abx and some herbs for about 4 months now. As always my symptoms come and go, no real pattern and didn't really seem like things were getting better.

I did start experiencing a new symptom, i call it "jerk" twitching, but the best way to explain it is when someone tests your reflexes, your leg or arm jumps without you controlling it, it's like that, in my fingers, arms, legs, toes, back and face. Twitching has always been to most constant symptom, so not the biggest deal.

Anyway, on to my point, i've been getting more and more discouraged, because treatment doesn't seem like it's helping.

This week i got sick(a cold or flu or whatever), i had a fever, with a stuffy nose and sore throat and the occasional cough. I was pretty much over it by friday, but that's when my symptoms ramped up. And boy have the ramped up. Started with twitching, then pain, weakness, palpatations and now dizzyness. What is going on?

Any ideas? I haven't changed medication in a while, i detox but honestly i never really experienced herxes in my treatment(i did have burning in my hands and feet for about 4 days once, but that was the most intense "herx") So i don't think this is a herx, but i could be wrong.

I feel like it's pretty weird i got sick in the middle of summer, it's even weirder that my symptoms have SHOT UP in severity, and the timing is too specific to be coincidence.

For those of you that want to know.

Main symptoms (most i've ever experienced)
Weakness and fatigue(95% of max)
Twitching(100% of max)
Pain in muscles(60% of max)
Anxiety(60% of max)


Treatment:

Rifampin 450mg,
Mino 200mg,
Azith 600mg(3 x week)
Oregano (2 tabs a day, one week on one week off)
Myc-p tincture (max dosage)
Bolouke ( 2 tabs a day)
Chorella( 2 tabs a day)
Milk Thistle ( 1 a day)
Activated Charcoal ( 2 a day)
Probiotics and fermented food
Sauna 3 times a week.
Detox tea
Turmeric coconut milk
Dry skin brushing
Mild exercise 3 times a week(haven't been doing it while i'm sick)

Hi Garion!

It looks like your treatment is geared toward Bartonella...

I don't see anything in there for Babesia. And if you tested positive for babs, Dr J in DC believes you won't make any headway in treatment until babs has been addressed.

I had a similar thing happen to me. I started Lyme treatment and got much much worse after 3-4 months of treatment. It wasn't until I addressed a mold issue I have that I didn't start getting better. I still have a ways to go, but I have to finish dealing with the mold, then babs, then bart, and if it's still around, Lyme. Oh yeah, I've also got Mycoplasma and Ehrlichiosis. But one thing at a time all the while supporting the whole body as best as can be done.

Good luck and don't lose hope. Keep researching and you will find some headway.

"So, after i did the IGXspot test about 6 months ago that came back positive for lyme. I also have a positive igg for m. pneumonia and Babesia. Besides that i haven't tested positive for anything, even with the igenix immunoblot i only got a band 41 slightly positive. So i'm still not fully convinced that lyme is what i am dealing with."

The IGXspot is a Lyme test...so that IS enough to diagnose you with lyme (along with mycopneumonia and babesia)


Garion - as Hoagie mentioned - it's possible that Babesia needs to be treated first. You stopped at one month - that's really not long enough. I think that might be something you need to revisit before continuing on with Rifampin. Maybe discuss this with your Dr. you do know you have babesia - positive test result..so it does need to be treated.


BTW - Rifampin dosage is a little bit low at 450 per day. (usually 600 )

Garion said...
Yea i thought the same thing about the Rifampin. I expected my LLMD to move me up to 600mg, but she didn't.

As for the whole Babesia thing, i understand that perspective but honestly how does that play out?

I've always been told that Clinical diagnosis is what matters, but i don't seem to have the symptoms. So if i go on IGG(which could be past infection). How long do i treat for? When do i know that it's been squashed and i can move on to the other co-infections? So with no symptoms for Babesia when is enough enough? Or will it somehow resolve my other symptoms? And i'm assuming if i stop after 3 months and then don't get better when treating other stuff the argument will be you didn't treat for long enough.

Can you understand why i'm frustrated and hesitant?

I don't have all the typical lyme symptoms, i have some but not most. I've had an LLND tell me straight to my face. "I see lyme every day, my practice is in "THE" lyme endemic area and i know what it looks like, and you don't have lyme." Then i've had another tell me, yea it's lyme but mostly co-infections. The IGXtest is a positive and that is why i am treating at all, but it's a new test and there really isn't any documentation on it, so no information on false positives, or accuracy of the test that i could find, hence the questioning.

I don't mean to be argumentative, but i'm so tired of no one having answers that make a difference to my actual condition.

hi Garion,

I share your frustration. I have been treating since October of 2017 and I honestly dont know if it is really making a difference. Yes, I am not as sick as I was in October, but I am not myself again. I have neuro-psych symptoms (which are the worst and most consistent of my symptoms- anxiety, suicidal thoughts, insomia), fatigue, muscle weakness, weird chest symptoms, head pressure, some shortness of breath, and just dont feel right in my head (sometimes cant process as well, weird sensation in my temples area, burning in the top of my head, sometimes easily irritated).

I have been on abx since the beginning, with some breaks here and there for a few days. I have taken clindamycin, zithromax, augmentin, cefdinir, ceftin, and doxy. I feel like I am missing one. I have had positive lyme igm through labcorp, neg igg. Neg Babs and Bart all labcorp/quest. Neg spinal tap, MRI, EEG, EKG, ECHO.

I can relate to your frustration because I feel like we are all out here trying any and everything to get well or some form of our former selves back. It's so frustrating because there isnt a defined path, or something that really works for all or permanently. I see post after post of people who have been treating for years and have been through most if not all of the combos of abx, herbal protocols and are now circling back around to repeat protocols. WHEN DOES IT END?! It's like you said, treat Babs to move on to Bart to come back to Babs to get to Lyme but wait here comes Bart again Arghhhhhh!!!

I feel stuck because I dont know which way to go now. I have been seeing a LLMD since Nov but I dont know that she can get me past this point. It's like I have to come up with ideas on which tx to try next and that's frustrating. Do I start herbals on my own? Do I spend $$$ to go to one of the better known LLMDs with no guarantee? And what do I treat? Do I assume I have all of it and start Babs and Bart tx as well?

I feel so betrayed by modern medicine. I know there are great people researching new tx and testing but it just seems like it's all on a snails pace when you are suffering.

sorry I dont know if any of this helps you in any way but I just want you to know that you are not alone in your frustration.
maybe we can have a pity party, I'll bring the balloons LOL.

Garion should go to 600 mg before 900 IMO.


BTW - anxiety and fatigue can be babesia symptoms.


You mentioned your major symptoms...any minor ones?

Thanks Lovemy3, yea i guess i'm just having a pity party. I'm just really really frustrated and downcast.

Girlie i think Sean meant go up to 600mg, he mentions he was on 300 and then doubled it. I've messaged my LLMD asking why i'm on 450.

10LymeB. Yip i kind of understand your point. Thing is ABX makes getting my gut into balance basically impossible. Having said that, my gut has been a problem for years even though i have made MAJOR changes to diet, i cut out almost all sugar, dairy and gluten. But when i started ABX my stomach pain ramped up again.

Girlie, you asked about more minor symptoms, i don't really know if they are minor but symptoms are less frequent.

Digestive Discomfort
Wasting (scary but i don't know how bad mine is)
Muscle Cramping
Anxiety
Chest Pain
Stabbing pains
Headache(infrequent)
Tremors
Brainfog(pretty rare)
burning skin
Palpatations

Might be a few more, but can't think of them right now