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I'm making myself crazy, please help!

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Posted 6/11/2017 10:34 AM (GMT -5)
Hello all!

I need some outside perspective because I'm really making myself bananas trying to figure things out for myself.

In November of last year I found an LLMD and tested through Igenex. My results were as follows:

IGM
Band 41++
Band 58+
Band 83-93 IND

IGG
Band 41 +

The doctor ended up diagnosing me with Bartonella and told me he would also treat me for LD. I've been treating with antibiotics and supplements since November and haven't made much progress.

I ended up seeking a 2nd opinion from another LLMD. He, too, diagnosed me with suspected tickborne infection(s) and prescribed me one antibiotic to start with. So at this time I'm sortof working with two LLMD's, however I don't really feel confident with either of them so I've made an appointment with yet another doctor, however, I can't get in to see her until September. sad

I decided I wanted to be tested again through Igenex. This time around my results were as follows:

IGM
Band 31 IND
Band 39 IND
Band 41++
Band 58++

IGG
Band 41 IND

So, it seems as though some new bands popped up as IND but where the heck did band 83-93 IND go? Why did the 41 band on IGG go from + to IND?

I realize I am probably putting way too much importance on the testing than I should, but I think I would feel better seeing an actual positive test. I am desperate to feel better and after 7 months of treatment I'm so incredibly frustrated that I'm not better. I'm frustrated with doctors who I feel don't know what the hell they're doing, I'm frustrated with tests that are so ambiguous, I'm sick and tired of being sick and tired. I'm scared that these doctors are missing an important part of the puzzle for me and that is why my health is not really improving. I suppose if I'm honest, some things have actually improved (some of my neurological issues are somewhat better, the awful shooting pains I used to have are gone) but overall, I still feel like absolute crap. sad

Anyway, I guess my question has to do with my testing. Can anyone shed some light on my latest results and help me understand why bands appear IND and some disappear? Do I have Lyme disease or what?

I feel like throwing in the towel and just giving up completely at this point.
Posted 6/11/2017 10:46 AM (GMT -5)
I think it's safe to say that we all wish we had positive tests.

Yes, you have Lyme - shown by the Lyme specific bands that keep showing up (93, 83, 31, 39) - but these tests rely solely on the immune function at the time of the blood draw. So, test results do change around and that's why retesting isn't recommended usually. Once enough of the right bands have shown up (just one Lyme specific band), there's no guarantee that they will show up again.

Have you had any improvements at all in your symptoms? 7 months is a while to go with no improvements, and may mean that you need a different approach if the right doses have been used during this time.

Other possible issues though - you could be treating a non-dominate infection. Lyme is not the top infection with the highest bacterial load for everyone. Sometimes it's Bartonella, Babesia, Yeast/fungal issues or mold or other things. Have you been evaluated for these things?

Also, detoxing plays an important role in our healing. Here is a thread that was just posted today talking about the help that the member got from adding in detoxing routines daily: www.healingwell.com/community/default.aspx?f=30&m=3863987
Posted 6/11/2017 11:16 AM (GMT -5)
When I first saw the 2nd doctor he advised me to go off of the antibiotics and antiviral I was on (he said he wanted to see how I felt going off of them) so I went ahead and did that for about 2 weeks. Going off of the antibiotics seemed to make my brain fog and neurological issues worse so I decided to go back on the antibiotics the first doctor prescribed (Minocycline and Rifampin). The problem, I think, is these doctors, both of them, don't seem to want to work me up to "normal" doses of the antibiotics they prescribe so in all reality, even though I've been treating this stuff for 7 months, I've been on what appears to be low doses of everything. Example: The first doc prescribed me 50 mg of Minocycline 2x daily. He prescribed that several months ago. I decided to up the dose myself so I've been taking 100mg2x daily for the last month or so. I tried upping the Rifampin (from 150 mg 2x daily to 300mg 2x daily) but after a few weeks I felt so terrible I decided to go back to the lower dose.

I haven't been tested for many coinfections but both doctors believed that due to my high VEGF and symptoms, I have bartonella. I was tested back in November for candida and that test came back negative. The 2nd doctor felt that I probably do have a yeast issue and prescribed Nystatin and Diflucin, but I broke out in terrible hives after a week on them so he told me to stop the Nystatin and now I'm just taking one Diflucin tablet a week. I did a stool test last year and have had both doctors look at the results (I don't really understand what the results mean) and neither of them saw any relevance in the results.

I do try my best to detox, but maybe I'm not doing enough? I do have 2 copies of the C677T gene mutation, so I think I probably do have issues with detoxing normally. I'm just not sure if there is more going on with me and these doctors just aren't recognizing it. That's my biggest worry. My issues are mostly pain related, major fatigue and general malaise that is relentless. sad

Thank you for your input on the testing. I kindof knew retesting was pointless, but again, I was hoping to see one test with a positive result to put my mind at ease. If that makes sense.
Posted 6/11/2017 11:53 AM (GMT -5)
The doctors that you are seeing may be getting 'monitored' by health official and they may be worrying about loosing their license if they prescribed higher doses - or they just don't know what they are doing. Either way, it means you are not getting the treatments you need to heal.

I would encourage you to read through Pirouette's amazingly detailed post about treating yeast/fungal issues on the bottom of page 2 of the "New to Lyme" page if you haven't yet. She's been through the ringer with yeast and fungal issues and shares a lot of information there. Plus you can search for her posts, and even start a new thread about Yeast/fungal issues if you have questions, and she will likely post as well.

Have you been checked for viral issues? Seems that a lot of doctors forget to check into that. Will your doc's test you for viruses if you ask? While Lyme does cause a great deal of fatigue, so do viruses like EBV and others.

I would also encourage you to work on increasing your detoxing. It's truly amazing how much it can help us get through treatments and heal.
Posted 6/11/2017 12:39 PM (GMT -5)
For some reason I've never given candida that much thought, but maybe that is a big part of my problem and I just don't know it!? I will check out the info you provided... thank you for that!

I have been tested for virals. My first doctor tested me in November and my IGG's were high for EBV, HV 1 & 6 (actually I think those 2 were IGM's), & chlamydia pneumonia. He prescribed me Valtrex which I took for about 6 months but when he retested my CD57 and virals a few months ago... my IGG numbers actually went up (but so did my CD57 which I guess is a good sign?). So he took me off of the Valtrex and has me taking Lauricidin. What I don't fully understand is the whole IGG vs IGM viral tests. The second doctor I saw told me that the incredibly high IGG titers weren't of relevance because they indelicate a past infection. The first doctor obviously believes the high titers are relevant and feels it necessary to treat the viruses. Who exactly am I supposed to believe? This is the kind of frustration I'm talking about. Sigh.
Posted 6/11/2017 12:50 PM (GMT -5)
There's a lot of arguing going on between doctors over the viral testing, which doesn't help the patients at all. I simply go by how I feel and how I respond to treatments. I have chosen to use Lysine for my EBV and other herpes viruses, and it's been working very well for me for the last 7 years. If my exhaustion gets worse, the first thing I do is give myself about 2 weeks on higher doses - if that doesn't help, then I move on to other possibilities.

This is a good article on EBV testing, although it is kind of "sciency" it may be of some help - or take it to your doctors and ask them about it! That's if you don't think you'll get the usual talk about "avoiding the internet reading" - as if we could actually trust every word that ever came out of a doctors mouth!
/www.ncbi.nlm.nih.gov/pmc/articles/PMC3782265/

Yeast and fungal issues will plague most all Lyme patients, if we don't take care to supplement probiotics and stick to our diets well - and lots of times that's not enough either to avoid having to treat yeast/fungal issues. Many of the symptoms of yeast and fungal issues are much like Lyme and company. You would do well to at least rule it out.
Posted 6/11/2017 1:32 PM (GMT -5)
Thanks for the info, Traveler. smile Maybe it would be beneficial to ask about retesting for candida, although I'm not sure how accurate testing is for that? I'll be the first to admit that I'm not super careful with my diet (I eat fairly healthy most of the time, but haven't gone gluten free, nor do I follow any standard diet). Prior to the second doctor mentioning candida, I hadn't really given it any thought because I didn't have any indications that it was an issue for me.

You mentioned Lysine. Is that something you can take if you have active herpes viruses? I thought I remember reading about taking Lysine during an active herpes infection is a no no (I believe I saw this on Buhner's protocol recommendations). I personally feel the sky high IGG titers are relevant and most likely a big issue and the fact that I spent 6 months on Valtrex and my numbers actually went up avand not down is significant. I've only been taking the Lauricidin for about a month or two but would be interested in adding in Lysine if that may help. The problem is that I honestly don't think either of my doctors are very knowledgeable about treatments, nor are either of them well versed in supplements and herbals which is something I feel is important when treating these infections. I just don't know enough about what I should be taking so I've been kindof fumbling along, adding things in when I read about something but not fully knowing if it's beneficial to me or not.

I hope that the third doctor I see has a clue about all of this. 😬
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