Those who took/are taking longer to heal - love to hear from you

I'm struggling lately - the clock is ticking...and I find myself getting worried about the timeframe.

I am just over 4 1/2 months into my treatment. I had some initial improvements - with sleep, anxiety, bouts of depression and a few other symptoms are much or completely better.
No improvement in my pain levels on a consistent basis. Still have the vibrations, chills (I thought the chills were getting better, in August, but they're back)

But nothing significant in the past few months...the symptoms that I still have - even sometimes seem worse than they were at the beginning of my treatment. Even when I'm not herxing.

So...if it is taking/took you longer to feel significantly better - like more than 6 months...please chime in. I'm having a bad day emotionally, and I need some encouragement.

I asked my Dr. about the MTHFR gene - and he said he doesn't find it to be an issue often...but I know a lot of LLMD's do think it's a big deal. So, when I reach 6 months, if I haven't made another step towards healing...I will approach him about getting the test.

I'm trying to not let my mind wander to thinking that I may have something else...other than lyme...don't want to go there....but it really wants to.

Hi Girlie - I didn't really notice improvement until I hit the 6 month mark (herbals only). I hope you get some improvement soon! Hang in there.

Saya - if you're back on this thread - what are you taking for the MTHFR?
I read that even if you don't have the mutation...that you can still take the supplements...they are good for anyone...
So, maybe I should take the methyl folate, and B6...I already take the methylB12 - always have as it is more absorbable.
Other than that, and extra detoxing...what else is there to do if you have the MTHFR mutation?

Maybe I should start another thread on it.

sayyadina, be careful with grapes. They are very high on sugar.

Even though you are not on prescription antibiotics, you are taking natural antibiotics that impact your microflora the same way that prescription antibiotics do.

You may want to eat berries (strawberries, raspberries, etc) instead. They are low on the glycemic scale.

Hey Girlie, I felt my worst at 4 1/2 months into treatment. At 6 months I turned the corner and slowly started feeling better (with many ups and downs). I'm at about 14 months now and physically feeling a lot better. Unfortunately, I'm having a hard time kicking the anxiety and depression, although it's not everyday thank God.
As for the MTHFR gene- I'd wait to get tested before taking any supp's. I have a few of the mutations and was told to take one of the standard supp's for it and had a horrible reaction. It's nothing to mess with especially if you're herxing. Charcoal is good though. Hang in there!

Was not Dxed till 25 years.

Took at least 5 months to feel better on ABX after a three month continuous herx.

Then after a two month ABX break to heal liver, and then ABX change, I have since went backwards again.Dam liver.

MTRFR test in the near futture.

I didnt slide back all the way, but it still sucks since I had a short taste of what "well" felt like. I'm bummed.

Not to mention the $ involved too.

Good thread Girlie.

I just wanted to echo the comments on MTHFR—I would get tested before playing with any supplements. You just don't know what you could trigger, should you have certain mutations. But I would get tested if I were you. You can do a $99 23andme.com test and then get the results interpreted for as low as $20 online. Let me know if you'd like more info.

And I also echo the binder—you really need a binder if you are detoxing, which you need to be if you are in treatment (you gotta help your body get rid of the dead debris). Charcoal is easy and inexpensive but here in CA, it's a carcinogen and has warnings on the label (birth defects, infertility). I prefer bentonite clay. Better yet is colestyramine, which is an Rx but very cheap.

And also want to echo the suggestion to test for viruses. That was the first thing my LLMD tested—to find out if my immune system was also overwhelmed fighting a high viral load (it was—I had 4 different viruses). If so, it would not be available to help with the lyme tx. It took over 2 months on antivirals in order for me to start feeling any better. Kinda scary. Normally, I'm the kind of person who doesn't even like to take tylenol but I was so sick I opted to go for the hard stuff. I was very anxious to start the herbal tx. so I took the drugs!! acck!

-p

Pirouette - For the 23andme test - how do I get that done? I would need a lab req to get the blood draw - and I don't think my PCP would sign one. For the Igenex I had to get a ND to take my blood. So, do I order the kit and get it sent to me? I could see if there is a ND in my city that would do a blood draw.
Re: viruses - what ones would I be asking for? Herpes and EBV? what else? Is that something I should be getting my PCP to test for?
I don't see my LLND until Jan/Feb...I'm doing phone appts. until then.
So, the testing may have to wait until I see him.

So I could get charcoal from my local health food store...I think I might do that.

Astro: I do get the ALT and AST liver enzymes tested - monthly, along with a couple kidney function tests and WBC and RBC as well. My ALT was high on one test, but went back to normal on my last test.
I was wondering if those two tests alone are enough for liver function. Online I was reading about other ones that could be done.

Yes the $80 is inexpensive...but these are phone appts. and I don't think it's as good as seeing the Dr. in person. He is a ND...and it's about 3 hours driving total plus 1 1/2 hour ferry ride each way to see him.

I understand your concerns, Girlie, and hope you're able to reconcile within yourself the long battle that having Lyme seems to mean.

Heck, I started treatment the day after the tick bite and I've just started my 4th month of treatment.

For whatever it's worth, LabCorp did my MTHFR testing and it was covered by my insurance (I have lab coverage). My LLMD ordered it.

And, thanks to Pirouette for the additional note about activated charcoal - bentonite clay seems more appealing in light of this.

Hi Girlie

I understand that you are very eager to get well
But getting the upper hand on these infections and rebuilding your immunity takes time, and a lot of rest.

I'm 35, think I was bitten at the age of 11 or 12, suffered from another disease at the age of 15,5, which brought down my immunity and gave the Borrelia the opportunity to florish, so to speak.
My dr tried to boost my immunity, cure my leaky gut, IBS, bowel inflammation - that was at the beginning of 2009. June 2012 I got diagnosed with Bartonella, then Borrelia. Started treatment in August 2012. I'm currently at 28 months of treatment and no better yet.

After being tested for so many coinfections and virusses my dr found out I have systemic Yersiniosis which is probably stopping my healing. I will start treating this in 2 weeks and have high hopes that this will be the last hurdle to get better from these infections.
He also did a final Babesia test (was PCR tested before, but negative), because he thinks this might be playing too.
I still am optimistic, sometimes not, and sometimes treatment fatigue is kicking in. I need to be focussed to not let that get the upper hand. But I continue to fight this. Day by day.

btw, I was MTHFR tested, but it came back 'normal'.

We've seen a lot of success stories on here, that's what keeps me going. If it weren't for this forum, I think I'd already given up.
I've also seen that you can not compare any of us. I can see that in my nearest surroundings: my sister has Lyme and Bartonella, we have different symptoms, we get different treatments, and we react to the treatments very differently.

Hang in there, you will get better! If you're not feeling ok, try not to think too much of the future, go day by day and give your body the time to get better. Listen to it, and please take enough rest.

MarieLS

Girlie—
You sked:
"Re: viruses - what ones would I be asking for? Herpes and EBV? what else? Is that something I should be getting my PCP to test for? I don't see my LLND until Jan/Feb...I'm doing phone appts. until then. So, the testing may have to wait until I see him."

EBV, CMV, HSV-1, −2, and HHV-6 for starters. This will help you understand what else your immune system is overwhelmed with. Any MD could do it—do they have Urgent Care where you are?

Regarding the 23andme.com - the controversy surrounded the interpretation they had been providing. It was rather narrowly defined so it's probably a good thing they are no longer doing it. The results and interpretation really need to be understood in context with your overall health condition. Now, the government can't trust people to approach it appropriately on their own so they made 23andme cease the interpretation portion of their services. No biggie.

-p

I think your husband and I are cut from the same cloth!
I am generally suspicious and have made a considerable effort to avoid public information lists.

What I did was provide a pseudo name when I did my kit along with a P.O. Box for delivery. I don't believe any other information is requested and you can also use a temporary charge card for purchase. The privacy info 23andme provides indicates they do "use" the information you provide if you choose to participate in a bunch of surveys they offer for research purposes. But that nothing else including your data is "catalogued" or "stored" (can't remember the phrasing) that would connect your account with your data. They also explain the high security provisions of the website but admit that, well, "anything" could happen.

All-in-all, I felt it was worth it under an alias. But I love that your husband would question it. The world is not a safe place for people who value privacy, civil liberties, and stuff. ;)

-p