Another newly diagnosed person, but skeptical of diagnosis

Hi all,

I have been newly diagnosed with Lyme (although I'm a little skeptical it's what I have) and have been lurking here. First off, I just want to say thank you to all the kind and generous members I see posting information here. Lots of wonderful information and helpful folks.

I'm lucky in that I think I've found some good docs. I'm seeing a functional medicine practitioner in NY, who seems knowledgable about Lyme although it's not her specialty. She's also been doing phone consults on my case with a prominent LLMD in (wait for it) Lyme, CT. I've started on 100 mg of Doxy twice a day a week ago, alongside 2 different kinds of probiotics, milk thistle/yellow dock for liver help, and a few other supportive supplements. I also started taking some Alinia (for possible parasites, which my doc guesses I have though stool tests don't show it), but had a bad herx reaction and had to stop.

I'm making my way through the intro threads, which I know have lots of helpful info on detoxing. I've ordered some AlkaSeltzer Gold, and have been doing Epsom salt baths (2 cups for 30 mins. Feels great!) That's the short version of my treatment.

My question is more around diagnosis. Have any of you experienced Lyme for several years and ONLY had the flu-like symptoms? I never saw a tick and never had a rash, and while I know plenty of people with Lyme don't, I've also never had anything but flu-like symptoms, digestive (GERD), and menstrual issues. These all first cropped up in 2012, primarily with a recurrent cold/flu thing every 2/3 weeks, then resolved and came back after a stressful period in late 2014. I came to my current doc after seeing 7 docs in NYC, none of whom had answers (i saw an allergist, an ENT, a gastroenterologist, my GP, two naturopaths, and a homeopath). I heard everything from "tubercular miasma" to "you just have a sensitive immune system," but that's all I got. No allergies, no sign of lupus, immune deficiencies, or autoimmunity.

My current doc finally tested me for Lyme and said I'm positive, but I am slightly skeptical. It seems like there's a fair bit of disagreement about how to interpret the tests, and the tests themselves are not very good! I have spent most of my life on the West Coast, but if I got it it was likely during the 6 months I lived in the Hudson Valley, NY in 2010.

For those who might be interested, here are my test results. I was only given the Western blot. I got a "present/abnormal" for 2 igM bands: P39 and P23. For the IgG, I only got p41. From what i've read, that seems like an indeterminate result—it certainly doesn't meet CDC criteria, although I understand that's for surveillance purposes and not diagnostic. But I also couldn't help but notice the CDC takes pains to point out that if you've been sick for a while, igM is irrelevant, and igG is what you should look at. I've been sick off and on since 2012. So if we're just looking at igG, all I have is one band, band 41, which is non-specific, and from what I've read, seems like it could cross-react with EBV, herpes, and other conditions. (I have had herpes type 1, the cold sore type.)

My practitioner and the LLMD she is is consulting with feels this is a positive Lyme, and that on the off-chance it isn't, the risk of treatment is much less than the risk of untreated Lyme. I respect that and am inclined to agree, but the Doxy is starting to hurt every time it goes down and makes me feel weird/paranoid, so ... well, a reinforcement to the idea that this is definitely Lyme will help me grit my teeth and get through it. I just don't want to treat for something that's not there, and end of up with an ulcer or other digestive trouble for no reason.

Just to recap: I've never had joint pain or paralysis. I think my memory is getting slightly worse, but that's also quite possibly a function of a high-stress information processing job. I certainly don't have brain fog, or I couldn't keep my job. I had one bout of rashes, but it may have been eczema. I get vision floaters, but again, that's hardly Lyme specific. The main thing I get is this sudden flu-like feeling that persists for between 6 hours-3 days, and often comes on without any warning. (Mild headache/sore at base of throat/ears plugged/chills/exhaustion like i've been hiking in the desert.) When this most recent round started in 2014, what happened was I got a bad flu, and then never got better. It just kept relapsing every few weeks. Over time, it's slowly lessened in severity (thank goodness), but never gone away. The most health I've had is one month at a time. I've worked throughout all this, but it's taken a big toll on my quality of life, and I've started to think of myself as chronically ill.

So if you've read this far--for which I thank you--I'd be curious to know if 1) you've ever heard of Lyme presenting only as recurring flu symptoms and 2) if you can shed any light on those test results at all. I'm really just crowd-sourcing wisdom here, since I'm also working with docs, but any input helps! I'm sure you all know how isolating Lyme can be.

Oh, I was also just tested (before I started the Doxy) for co-infections, so should be getting the results any day. That round of tests included the Western Blot again, so it'll be interesting to see.

Of course, if it's not Lyme, I'm not sure what it could be. The LLMD also suggestive mold, which I have considered, except that this has been going on in 4 different apts and 2 offices. We will likely treat for that, but my doc said maybe not at this very moment, at the risk of herxing too much.

I've been off dairy for a year, and caffeine, alcohol, sugar, and grains—all the fun stuff—for about a month to two months, eating mostly organic meat and vegetables with some fruit and squash. It helps, but I still can't do a normal life/commute etc. I've been working from home the past week and feel much better doing that, except the Doxy creates kind of a weird twilight zone feeling. (That may also be because I'm not leaving the house much!)

That's all for now, off for an Epsom salt bath. Thanks again for any thoughts you might have. Just curious if this rings a bell with anyone's experience!

Hi Gabrielle -

Sorry you're here but glad you found us!

You have done such an amazing job learning and research. Good for you. And you have a great diet going already. I'm glad you're treating and it's great that you have such a proactive MD who is willing to consult w/ an LLMD. I know what it's like to question information that is confusing and controversial. You're smart to do that. I'll provide some suggestions below to help answer your questions, I hope:

GabrielleM said...
...I've started on 100 mg of Doxy twice a day a week ago

Most LLMDs will suggest this is half the dose you really need--I'd try talking w/ your MD about increasing to two doses of 200mg once you feel you're ready to increase it. You can have trouble w/ the abx at first - for me, this lasted a month with each one I took. I had trouble w/ herbs, too. The herxing is rough ---you don't want to herx too much but the herxing can often be a good sign you're hitting something. So, I suggest that is the first verification that yes, you do have Lyme disease and you're treating it appropriately.

GabrielleM said...
...alongside 2 different kinds of probiotics, milk thistle/yellow dock for liver help, and a few other supportive supplements.

Including your epsom salt soaks, alkaseltzer gold, your detox is good! I'd try covering a few other bases as well, which might help alleviate some of the herxing-- try to incorporate brain detox with Nutrimedix Pinella and Burbur. Also, please incorporate a binder - this will help bind toxins and debris, stuff you're killing in your GI and this might also help with other symptoms. And you can also eventually add sea salt, hydrogen peroxide and essential oils to your soaks, lengthen the duration and increase the heat over time.

GabrielleM said...
...I also started taking some Alinia (for possible parasites, which my doc guesses I have though stool tests don't show it), but had a bad herx reaction and had to stop.

When you feel up to it, try reincorporating Alinia. Start with a lower dose, perhaps, pulse it and then slowly work up to optimal dose. If you reacted to it, that probably also means you're hitting something. You don't want to overwhelm your body but it might be necessary to "fight through" the herxing at first.

GabrielleM said...
...Have any of you experienced Lyme for several years and ONLY had the flu-like symptoms? I never saw a tick and never had a rash, and while I know plenty of people with Lyme don't, I've also never had anything but flu-like symptoms, digestive (GERD), and menstrual issues. These all first cropped up in 2012, primarily with a recurrent cold/flu thing every 2/3 weeks, then resolved and came back after a stressful period in late 2014. I came to my current doc after seeing 7 docs in NYC, none of whom had answers (i saw an allergist, an ENT, a gastroenterologist, my GP, two naturopaths, and a homeopath). I heard everything from "tubercular miasma" to "you just have a sensitive immune system," but that's all I got. No allergies, no sign of lupus, immune deficiencies, or autoimmunity.

This all sounds like classic Lyme. Flu-like symptoms are the first tell-tale sign of Lyme infection, which makes it very difficult to discern Lyme from the regular flu. The fact that you've had recurring symptoms like that could mean your immune system continues to struggle. Digestive and menstruation issues are also very common. Crashing when you're stressed, etc. Being passed off from one MD to the next ---all classic Lyme experiences.

GabrielleM said...
My current doc finally tested me for Lyme and said I'm positive, but I am slightly skeptical. It seems like there's a fair bit of disagreement about how to interpret the tests, and the tests themselves are not very good! I have spent most of my life on the West Coast, but if I got it it was likely during the 6 months I lived in the Hudson Valley, NY in 2010.

There is a lot of confusion about the tests but most of the reasons for the inaccuracies are due to false negatives, not false positives. It is incredibly rare, if not impossible, to have immune reactions to Lyme-specific bands if the Lyme microbe wasn't present. What else could cause that reaction? And a faint reaction is still a reaction (can't be sorta pregnant). Also, based on my research, most people have the Lyme microbe, but most don't become sick from it--they stay healthy or their immune system was dominant when they first contracted it so they never developed Lyme disease, or they're immune (immunity has been found in DNA evidence), etc. Many reasons we all react different.

GabrielleM said...
...I got a "present/abnormal" for 2 igM bands: P39 and P23. For the IgG, I only got p41. From what i've read, that seems like an indeterminate result—it certainly doesn't meet CDC criteria, although I understand that's for surveillance purposes and not diagnostic.

Bands 23 and 39 are two of those "Lyme-specific" bands and there is nothing known at this time other than the Bb microbe/DNA that can cause those reactions. That's about as definitive as you can get. Even if you had reactions to more bands, you wouldn't really be "more positive". You might qualify for the surveillance case data but that really means nothing in terms of diagnosis. I LOVE that you already know this!

GabrielleM said...
...But I also couldn't help but notice the CDC takes pains to point out that if you've been sick for a while, igM is irrelevant, and igG is what you should look at. I've been sick off and on since 2012. So if we're just looking at igG, all I have is one band, band 41, which is non-specific

The Bb microbe has crazy affects on the immune system. There are so many anomalies with it's impacts that the IgM vs IgG "rules" don't really apply for Lymees. And remember, the CDC gears it's information and data toward surveillance criteria. It matters not that you have 2 bands or 5 bands of IgG or IgM. You got a Lyme-specific band? You got Lyme, my friend. I likely contracted Lyme 20 yrs ago. I had my first WB 4 yrs ago and I was IgM CDC pos and IgG neg... made no sense - these tests rarely do. So, I'm sorry to confirm your test but you're better off ignoring the IgG vs IgM.

GabrielleM said...
...and from what I've read, seems like it could cross-react with EBV, herpes, and other conditions. (I have had herpes type 1, the cold sore type.)

Some of your sx do sound like it could be from the HSV-1 so I would talk w/ your MD about taking an antiviral, if you don't already. The sx can overlap making it difficult to know how you're doing on the tx and they can also just make Lyme & Co tx that much harder to tolerate and harder on the body. That is one definitive thing you can nip in the bud by eliminating it from the picture of your herxing and progress, etc. by reducing viral load w/ antivirals.

GabrielleM said...
...My practitioner and the LLMD she is is consulting with feels this is a positive Lyme, and that on the off-chance it isn't, the risk of treatment is much less than the risk of untreated Lyme.

Agreed.

GabrielleM said...
...the Doxy is starting to hurt every time it goes down and makes me feel weird/paranoid, so ... well, a reinforcement to the idea that this is definitely Lyme will help me grit my teeth and get through it. I just don't want to treat for something that's not there, and end of up with an ulcer or other digestive trouble for no reason.

It's possible the paranoia, weirdness, twighlight feeling you described all could be a herx and if it is, it's likely a neurotransmitter imbalance, which could be caused by several things. But one thing you can try is the brain detox w/ Pinella and Burbur, which should help reduce toxins in the brain from the antimicrobial process.

Also, abx are notorious for causing GI issues since they disrupt the microbiome. But there are things we can do to help with that. The neurotransmitter sx (AND the floaters you mentioned) could also be from yeast/fungal overgrowth, which is common with abx. Please also include an antifungal herb or Rx - see this thread for more info:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

You can also explore transitioning to an herbal protocol. Most of us are doing a hybrid tx with both abx and herbs. Takes awhile to work up to the optimal doses, however.

GabrielleM said...
...The main thing I get is this sudden flu-like feeling that persists for between 6 hours-3 days, and often comes on without any warning. (Mild headache/sore at base of throat/ears plugged/chills/exhaustion like i've been hiking in the desert.) When this most recent round started in 2014, what happened was I got a bad flu, and then never got better. It just kept relapsing every few weeks. Over time, it's slowly lessened in severity (thank goodness), but never gone away. The most health I've had is one month at a time. I've worked throughout all this, but it's taken a big toll on my quality of life, and I've started to think of myself as chronically ill.

This cycle sounds EXACTLY like what I experienced the first 3-4 yrs after I was infected except that in addition to flue-like sx I had bronchitis and sinusitis. It was severe and frequent that first year, then waned more and more each year. Then I crashed 15 yrs later and I was sick for about 13 months straight...MDs kept giving me rounds and rounds of abx that were also used to tx Lyme & Co and I started herxing w/ more specific Lyme, bart and babs sx (thanks to Google I was finally clued into Lyme) and that's what led me to an LLMD for a dx.

The coinfection testing can be just as inaccurate. Try filling out this questionnaire and sharing results w/ your MD - that might help you figure out what else you might be dealing with.
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

Hope that's helpful - if not, just keep asking questions. Others will be along to offer their ideas, too.

-p

welcome , direct microscopy of the spirochete helps if the test isnt enough also dna connexions test for the dna does not require a doctor if you need more proof ...

my first 3 years with this disease were spent with just heart palpitations and air hunger, many tests done, asthma related , heart ultrasound, etc.

then i start to get endless throat infections that will not go away with one week of abx , even the strongest.

then i got tonsils removed and half yr layer started having horrible somach pain, gastritis and duodenitis with no h-pylori. lost 30 pounds.

then during an unrelated abx treatment (clarithromicin+amoxicilin) i got my first herx and got really scared because i had no idea what it is. i also got the first time peripheral neuropathy, only after abx!

much later and after loads of abx i developed the rest of symptoms: generalized arthtitis, brain fog occasionally, optic neuritis, etc....

i have no idea what this is but on this forum we call it Lyme, and we tend to react funny on some antibiotics. maybe side effects but what are the chances for all of us here to be allergic at the same time to penicilin AND several nonpenicillin abx?! very very low.

we all are a bit skeptical about this diagnosis but then again, the doctors have nothing else to throw at us and no other treatments. so what else to do?

To your last question: my friends were with me through the whole journey as it was them who took me to the ER when I had my big onset. They have been incredibly supportive throughout. I can't imagine how this journey would be without them knowing. This has been true for my coworkers and boss as well. Friends, coworkers and family have all helped research and cover for me when I've had bad days. I know this isn't true for everyone, but it sounds like you have a supportive group as well. I think it helps them to understand and be more supportive when they know exactly what you're dealing with.

The other thing is that I've held myself up as an example as to why they need to be strict with prevention and checking themselves. I have a group of friends that are campers and hikers, and I'd feel HORRIBLE if one of them got this because I kept silent. Most are shocked to hear Lyme is in Texas.

"For those who might be interested, here are my test results. I was only given the Western blot. I got a "present/abnormal" for 2 igM bands: P39 and P23. For the IgG, I only got p41"

Your doctor is correct. You are positive for lyme. 39 is "thought" to be specific to Lyme. 23 is DEFINITELY specific to lyme. And 41 is a spirochete of some kind. So unless you have syphillis, then it's picking up Borrelia.

There's no such thing as "only" the flu every 2-3 weeks. No one should be getting a flu every 2-3 weeks. This is a major health issue.

The every "2-3 week" flu you are experience is herxing. The life span of the Borrelia bacteria is 3 weeks. Whether it's your immune system killing them or the bacteria just dying off on it's own, this cycle happens because during this time a large die off is happening that makes your body go into inflammation (the flu like symptoms).

TxBart, that's really helpful advice about using yourself as an example. I have plenty of other friends raised on the West Coast who go hiking in the Hudson Valley and don't really think much about tick checks. I'd hate for them to start dealing with what I'm dealing with. If I think about it from the educational angle, it's easier to put my discomfort aside.

Dacarte3, thanks for sharing what sounds like a similar experience. It's frustrating how much information online says to disregard the igM bands if you've been sick more than a month. That, and the LabCorp disclaimer on my test results about EBV, is what made me question my results. But it sounds like they are more clear-cut than I, with my extremely non-medical background, first thought. And I'm beginning to see my way toward an "I can beat this" approach, which feels great.

Frankly, I guess what frightens me about Lyme is that it can seem like you've beaten it, only to relapse. How can you know your body is truly rid of it? It sounds like you can't. Then again, most of us can't really know how healthy we are, or aren't, or how much healthy time we truly have left.

Thanks for listening, all.