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Do I even have Lyme?

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Posted 10/27/2014 5:46 PM (GMT 0)
I list my symptoms and IGenex results in my signature. I just don't know if I have Lyme. I've been reading old posts on this forum, using the search function.

It seems most people have herxing followed by improvement. I haven't herxed at all. I tried 200 mgs mino with malarone for a month and no herx. I switched 4 days ago to 200 mg doxy and flagyl and still no herx. I take 20 drops samento and 20 drops banderol 3 times a day and no herx.

I have not herxed nor have I improved. All I know is I'm really sick and uncomfortable. Disabled. And I'm spending loads of money on LLMD appts and supplements with no sign of any kind!

Is it just possible that my illness is not tick related? What about my IGenex results?

I did test positive for MTHFR 1298. I wonder if that is the root of all of my problems? What else could it be? Most members of this forum do respond to abx or herbs. I literally have no response. Strange!
Posted 10/27/2014 6:01 PM (GMT 0)
You do have Lyme - the tests show that, especially when combined with your symptoms.

What is more likely happening is that you have other conditions/infections that are preventing you from healing. Are you doing any kind of treatment for your MTHFR 1298 mutation? That will likely make a difference.

Have you had your adrenals & thyroid tested?

Do you have any suspected co-infections? What about other health conditions? Do you know if you have any others?
Posted 10/27/2014 6:09 PM (GMT 0)
Thanks traveler. I was hoping to hear from you.

I just started a supplement for the MTHFR called 5-mthf. It's only been 4 days.

I do take both cortisol and thyroid meds. I work with a top notch hormone clinic in Houston. They take care of all my hormones. And, they were the ones to order the IGenex test after I wasn't making progress on their hormone plan. They recommended I see a LLMD.

All my coinfections tests came back negative. But LLMD suspects ehrlichia. That's why I'm on 200 mg doxy.

But nothing ever changes for me. It makes me wonder if it's not tick related. But there are some positive bands on my IGenex test. I am so confused.
Posted 10/27/2014 6:14 PM (GMT 0)
Well, I'm no good with figuring out the abx, so we'll have to wait for someone who is much better with that to check on your abx combo's. All I know is that 200 mgs of Doxy alone isn't enough - but you have it combined with Flagyl - so I'm lost! LOL! Sorry!

Patience is the hardest thing when we don't feel good. Remember that this is a very slow growing bacteria, so it will take more than a week or two for most effects to be felt. Many have to wait for several months to see much improvement at all.

Soooo, we need to have those of you that know about these abx to weigh in on Utahgal's abx protocol!!! Pretty please??
Posted 10/27/2014 6:18 PM (GMT 0)
"All my coinfections tests came back negative"

I know this isn't super helpful but the coinfection tests aren't very reliable, even through Igenex. Often the coinfections need to be diagnosed clinically by your symptoms.

Post Edited (sarahm620) : 10/27/2014 12:22:13 PM (GMT-6)

Posted 10/27/2014 7:17 PM (GMT 0)
The 200 mg per day of doxy may not be doing enough for you to herx...or feel better.
The amount that most LLMD's prescribe is 200 mg twice daily.
However, many start at the low dose of 200 mg per day.

I think it's too soon for you to throw in the towel.
We all respond differently to different antibiotics. I found the doxy improved a couple of my symptoms initially. Now that I've changed meds, I find the biaxin is giving me brutal herxes...but no symptom improvement.
So, it's only been 4 days since you added the Flagyl? Give it a few more days...see what happens.

Maybe discuss with your Dr. taking the 200 mg twice a day of doxy...and see if it induces a herx?
Posted 10/27/2014 7:47 PM (GMT 0)
Hi Utahgal, It took 3 months before I started to see improvements. It was really kind of funny, I complain to my LLND that I was not feeling any better and he said it takes around 3 months to notice a difference if you have had Lyme for a long time. Hang in there and don't give up yet:) Also I found recognizing a herx isn't always easy and it's different for everyone.
Posted 10/27/2014 8:09 PM (GMT 0)
I have heard of some that never herx but it's possible you just haven't found the right treatment. I never herxed on banderol or Samento or Malarone though I only took one pill of the Malarone 3x week so who knows. Doxy I did herx a bit though only at 300mg. or more. The two that kick my ass are monolaurin and oregano tabs called ADP from Biotics especially the monolaurin. Maybe worth a try.
Posted 10/27/2014 8:09 PM (GMT 0)
Thanks Mom. What med and dose were you on? So, you didn't notice any improvement for 3 months? How much better are you now?

Your post really eases my mind. I have been so stressed out for not responding to the medication.
Posted 10/27/2014 10:44 PM (GMT 0)
I know what it feels like. I kept reading about people herxing and I wasn't experiencing one. I also didn't know if I was herxing or not. I started treatment with Plaquenil, Mino, and Rifampin and tons of herbals. about 2 months later he switched me to Amoxy, Marlone, and Charithromyocin and not as many herbals. To this day I'm not sure about the whole herxing thing. I had a influx of symptoms that lasted about 2 weeks (I call it bundling) because they all seemed to come in a bundle. I asked my Dr about it and he said herxing only lasts for a day or two. I'm not too sure about that.

I also recently found out that have the 667 one copy mutation. I don't fully comprehend how that effects a herx. It seems to me, if I'm not able to detox than I would have a toxin overload built up. Which would cause me to herx a lot?

I do feel better but I've had to stop all treatment due to other issues. I do notice symptoms creeping back in. With luck I'll be restarting treatment in a few more weeks.
Posted 3/22/2015 6:20 PM (GMT 0)
I feel the same way, I started flagyl 16 days ago and doxy 9 days ago and no herxing. I feel like I may not have lyme at all. Tests for babesia and Bartonella are negative through quest and culture test was inconclusiveat 8 weeks, still waiting for results for the 16 weeks I should get tomorrow. I have not received results for my erichiloises yet. My IGenex tests wereP: IFA was 80 positive western blot was IgM IND on bands 31, 39 and 41 IgG was IND on bands 31, 39 and positive on 41, 58 im still gong through testing, lasts tests I took in September 2014 my RBC were allover, then in 2013 liver enzymes were up around 63. I Now found a new LLMD and getting more testing done. My biggest symptom is chronic fatigue, but I also have off balance feeling, out of it a lot like am I here? I had a lot of air hunger 7-8 months but that isn't as bad anymore, head n eye pressure, ringing in left ear (was my first symptom) had racing heart but it's normal now, palpitations come and go, blurry vision. I just hate I feel so tired and I feel like my head is just going to drop n I get where I'm not truly dizzy but could get vertigo any minute. Hard to focus, concentrate etc I still work and it's very hard.
Posted 3/22/2015 6:42 PM (GMT 0)
Did you try minocycline + biaxin + tinidazole ?

That is a very strong combo that WILL kill lyme very strongly if you have it.

If you don't herx on that then it is likely that co-infections are causing the majority of your symptoms. But that combo will even treat some co-infections or at least inhibit them.
Posted 3/22/2015 9:10 PM (GMT 0)
No, this is the first treatment I have had besides using doterra oils which I still use. I saw an LLMD last November who would not help me unless the culture came back positive so I found a new LLMD and had to wait 14 weeks to get in to see him. He's also a functional medicine Dr, I have a friend who sees him too and she's getting better now for the first time after many Drs! He wrote a book I read and I was impressed with his compassion and his reviews. I'm looking forward to see him again in May. My babesia and Bartonella tests came back negative, but I know that really means nothing, the air hunger I experience from time to time tells me I have something along with lyme. This is all so confusing to me.
Posted 3/22/2015 9:28 PM (GMT 0)
LLJFaith, you are still early in treatment too - there are many that don't herx until they are a month or more into treatments. And your test results are pretty conclusive.

We have to remember that somehow with these infections, almost everyone goes through a period of disbelief. We just have trouble accepting that we have Lyme.
Posted 3/23/2015 1:47 AM (GMT 0)
Very true!
Posted 3/23/2015 2:55 AM (GMT 0)
I belong to a few lyme support groups, I'm hearing antibiotics don't help anyone so I don't know what to think. I hear they take them, then once off they relapse. I wasn't put on a detox protocol yet, I'm trying to eat healthier, take Epsom salt baths, drink water, I take fiber wise and immune powder n vitamins and juice veg n fruits. I'm not perfect with diet yet but I'm learning.
Posted 3/23/2015 2:26 PM (GMT 0)
I started getting alot of floaters in 2008. After about a year or so of these relentless symptoms:back of head neck area throbbing, strong pulse (in abdomen) blood shot eyes, from there I been developing a neurological symptoms.The list is : visual snow, (aeropsia) palinopsia, oscillopsia (minor symptoms) with some balance problems, ear ringing heart palpitations and these spells of cognitive dysfunction and more recently memory issues. Some of these symptoms seem to match up with lyme disease symptoms, I am tired of just being passive. Not to give the wrong impression I have had many Mris and a host of other test!!! Do any of you guys think it sounds like lyme???? Please respond.
Posted 3/23/2015 2:57 PM (GMT 0)
No improvements yet, I'm getting adrenal support this week, I don't know if it'll help but trying some supplements for it called Adreset. My biggest problem is chronic fatigue. My symptoms have shown it to be lyme with clinical symptoms, everything else has been ruled out. I should be getting my results today with the culture test, it's been inconclusive so far, but it's been over 16 weeks waiting so far. Now waiting for other tests to come in, thyroid, erilichioses, vitamin d. My Dr I have now is very smart and reviews has helped a lot with lyme and is very knowledgeable so I'm hopeful, although I give all to God, Jesus is my healer, I believe every day and claim my healing every morning as I give all glory to God! We will overcome!
Posted 3/23/2015 5:06 PM (GMT 0)
Robmed2015 - I moved your post here so that it would get more views: www.healingwell.com/community/default.aspx?f=30&m=3363918
Posted 3/23/2015 5:14 PM (GMT 0)

LLJFaith said...
I belong to a few lyme support groups, I'm hearing antibiotics don't help anyone so I don't know what to think. I hear they take them, then once off they relapse. I wasn't put on a detox protocol yet, I'm trying to eat healthier, take Epsom salt baths, drink water, I take fiber wise and immune powder n vitamins and juice veg n fruits. I'm not perfect with diet yet but I'm learning.

Some people heal just fine with abx alone, some need a few herbs added in and other needs to use herbs only. It's really hard to know what group you "belong" in until you have tried them out and find which ones work for you.

Many of the doctors don't understand yet just how important detoxing really is to our healing - and that it can help control the severity of your symptoms!! We have a great list of suggestions for detoxing while you are dealing with these infections in our "New to Lyme? Start here!" thread.
Posted 3/23/2015 10:38 PM (GMT 0)
Thank you, my Dr is a functional med dr and is very knowledgeable with detoxing, my next appointment he is going to put me on an extensive plan after all my tests are back for the next appointment. I've been taking fiber wise, Epsom salt baths, lemon water, juicing. I'm not perfect on diet yet but learning.
Posted 3/24/2015 1:41 AM (GMT 0)
Utalgal be very careful with the 5-MTHF, I felt fine the first 2 weeks or so then it started to make me sick and I had to pull the capsules open and take them in halves and even skip days till my body got used to it. Not saying it's going to happen to you but just be aware it can be to much for the body at first.
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