What if I'm not THAT sick...?

[KimmyB]

Hi everyone,

After 6.5 years of mystery illness, I'm seeing a new Naturopath who wants to get me tested for Lyme. I had another Naturopath -- a Canadian Lyme "expert" -- rule Lyme out about three years ago because she didn't feel I presented with enough of the symptoms. I never had a bullseye rash, though I did have a small round rash show up on my leg well after I got sick... don't even know if it was connected.

But my illness has been ongoing and this new ND says she believes there may be something infectious happening, quite possibly Lyme, and wants to rule it out. It will be VERY expensive for me to get this test done. (I don't know what it's called -- I'll find out more next week when I see her.) The results will take more than a month to come back.

My symptoms have been ebbing and flowing over the past 6.5 years. Fatigue (physical and mental) has been the primary symptom, no libido, fluid retention, major digestive difficulties, constipation, dehydration, adrenal fatigue, low thyroid, low heat tolerance, occasional ringing in my ear (though only usually for 10-15 seconds and gone)... the list goes on. Occasional memory difficulties and brain fog, but usually connected to whatever thyroid treatment I'm doing at the time. I had a headache for a month right when I first got sick but it went away and never came back. And I had candida that didn't respond well to antibiotics but did get wiped out using a potent Chinese herb for about a year.

I can see how some of my symptoms could maybe be considered Lyme... but they could also be thyroid, hormone, MTHFR/CBS mutation, and so on. For the most part, my labs come up pretty normal (other than the thyroid, which is lower than it should be).

The thing is, I haven't ever had to stop working (sometimes it's been awfully tough but never bad enough to have to stop entirely). My motivation is super low and my stamina is pretty low after being sedentary for so long now (I used to be ultra-fit) but I CAN still go for walks and do other physical stuff. AND I've never had the horrible body pain that many Lyme people get.

My question for all of you folks is... am I actually sick enough to potentially have Lyme? Or was that original ND correct that, in all likelihood, I'm just not sick enough?

 

[msf]

How dare you not be that sick? Just kidding. I sometimes feel that I am not sick enough to contribute to some discussions on here.

Re: Lyme, seroprevalence studies have shown that you can have Lyme and be asymptomatic, so yes, you are ill enough.

 

[KimmyB]

How dare you not be that sick? Just kidding.

LOL!!! Thanks @msf , I had a good laugh at that.

That's good to know... I mean, obviously I don't WANT to have Lyme. But after 6.5 years of unexplained illness, after previously being uber-healthy, I just want an answer and something that I can treat.

So then... do people who are "less sick", respond better to treatments? OR, does it just mean that bloody infection is hiding better in our bodies and is harder to get out?

 

[msf]

Hmm, that one is above my pay grade, I'm afraid.

If I was you (and I had the money) I would get the tests done first and then you can decide whether you think there is enough evidence that you have Lyme for you to think it is worth taking the antibiotics or whatever a Naturopath prescribes for it (herbs?).

 

[Ema]

If it were me, I would ask the naturopath about just getting the regular Western blots done through IgeneX. This should cost you less than $200.

The newer tests (I assume like the Neuroscience iSpot?) are interesting but I don't think they are *that* much more sensitive and specific to warrant spending the extra money at this point in time.

Since you've been sick for quite a while, you might also want to think about doing an antibiotic challenge prior to testing which often stirs things up so that a more robust result is seen on the testing. Your reaction to antibiotics may also provide a clue for your practitioner as to whether or not Lyme is a factor.

Lyme remains a clinical diagnosis where testing is but one part of the picture.

 

[Snowdrop]

It's important that if you're going to spend a lot of money that you get your test from a really good lab.
I'm sure there is talk here on some thread about which lab that is. Off the top of my head I think it might be Infectolab.

You might be interested in this link:

http://www.humanthology.com/lyme-disease/2014/9/15/slyme-disease-how-a-speck-changed-my-life-forever

 

[Misfit Toy]

The important thing to know is that Lyme doesn't always present with a bulls eye rash. I think it would be good to have just to rule it out. One of the problems with the test is that it's not always accurate. That is what I keep seeing over and over.

Either way, good luck and I hope you gather more data!

 

[KimmyB]

Lyme remains a clinical diagnosis where testing is but one part of the picture.

That's just it... I was working with a very knowledgeable ND who specializes in Lyme, and she said in her opinion, I don't have it. It was her clinical diagnosis that sent me in opposite directions, never following up on Lyme. She is a Lyme Literate Doctor, no question... but oh how I wish I had been tested.

Your reaction to antibiotics may also provide a clue for your practitioner as to whether or not Lyme is a factor.

Ema, would that have to be a specific antibiotic? Or would any antibiotic cause this reaction?

You might be interested in this link:

Good God... that's terrifying. That poor woman. What a horrifying tale... both for her, and for anyone who might have Lyme and no diagnosis.

 

[KimmyB]

If it were me, I would ask the naturopath about just getting the regular Western blots done through IgeneX. This should cost you less than $200.

Oops, I had to make a second reply as the Multiquote wasn't working properly.

Is the Western Blot considered accurate, though? I'm not sure of the name of the one she wants me to do, but it's $1000. (gulp)

The important thing to know is that Lyme doesn't always present with a bulls eye rash.

Absolutely, @Misfit Toy! As I mentioned in my original post, I did have a rash but it wasn't bullseye, and it came on after I fell ill... so I have no idea if it has anything to do with this or not. I wish I had thought to take a photo of it, but then again, I never thought I'd be sick for 6.5 years so... hindsight.

 

[Sushi]

Is the Western Blot considered accurate, though? I'm not sure of the name of the one she wants me to do, but it's $1000. (gulp)

What country are you in? In the US, many insurance companies will pay for the full Igenex test for Borrelia and co-infections.

 

[drob31]

Your symptoms are nearly the same as mine, minus the low thyroid levels. My free t3 levels are normal.

 

[Valentijn]

I can see how some of my symptoms could maybe be considered Lyme... but they could also be thyroid, hormone, MTHFR/CBS mutation, and so on. For the most part, my labs come up pretty normal (other than the thyroid, which is lower than it should be).

The Yasko/Genetic Genie CBS SNPs have no or very little impact. They would not be causing symptoms. It's also unlikely that the common MTHFR mutations would have a noticeable impact. Most people have at least one of those mutations, yet most people are not unhealthy. The major impact comes in the form of birth defects in a fetus where the mother has a MTHFR mutation but has not been supplementing folate or eating a lot of vegetables.

Regarding symptoms being non-disabling in Lyme, that can certainly be the case for a long time. I was bitten dozens of time when I was 13-14, started developing chronic mild symptoms at the time - increased sensitivity to pain (probably due to mild inflammation), some skin/scalp issues, and mild joint discomfort which wasn't painful but felt better after cracking joints, especially in my back. I also had my first episode of heat exhaustion at this time.

More symptoms started 10-15 years later, but it still wasn't particularly disabling. I had "pericarditis" flares a couple times, a "complicated hemiplegic migraine" which made the right side of my body slightly numb for 3 weeks (ended by a normal dose of folic acid), presumed pneumonia diagnosed after the fact due to the marks left behind, followed by "exercise-induced asthma" which did feel like PEM, didn't respond to corticosteroids, and faded after a year or so. I also had my first "stretch marks" appear, even though I hadn't gained any weight, following antibiotics. I had several sinus infections and other times where I felt ill but with no fever, etc.

I also likely had intermittent PEM flares during exercise and martial arts classes, but assumed I was just getting sick several times per month. But those were mild and went away when I stopped with the activity, and sometimes didn't appear at all when repeating the same activity at a different time. Mild joint problems started, mostly in my knees when walking up stairs, and my left jaw getting uncomfortable and needing to pop the joint to feel better. I also noticed some blood pressure and heart rate irregularities at this time, when exercising, and started having intermittent soft-tissue swelling, mostly noticeable in my fingers.

Until ME onset 4 years ago, 20 years after Lyme exposure, I was able to go to school or work full-time. I had mysterious and frequent health issues, but they were mild enough to ignore or went away after a couple weeks. I never had a high level of pain, until I got the constant ME headache after ME onset. So a lack of severe neurological or pain symptoms doesn't seem to rule out Lyme.

 

[Alea Ishikawa]

@KimmyB - I'd have to second Ema's post. IgeneX Western Blot IgG and IgM (#188 and 189 on their test form, I think) was a little over $200 for me. That was without insurance.

I'd suggest going on a "challenge" for about a month prior to your testing, to increase your chances of getting a reaction on bands. You might be able to go on the antibiotic doxycycline (you can counter gut flora loss somewhat by taking probiotics) or via anti-Lyme herb Cat's Claw or Samento. I'd recommend starting at teeny doses for an herb and titrating up. There was a study done by Eva Sapi et al. which showed doxy pushed Lyme into "round" form mostly, while herbs seemed to eliminate a large portion in vitro.

There is lots of controversy over chronic Lyme. The ELISA that the CDC recommends for "screening" on two-tiered testing is notoriously bad. However, IgeneX seemed to score well above standard on their Western Blot proficiency test and was the only one out of 58 labs to score 100%. I will mention that IgeneX did get pegged for non-compliance on two separate occasions and fined in 2001, and their LUAT (urine test) was very inaccurate.



Your rash might be significant (see gov pictures here). I was still able to work and go to school for some years after developing a classic bulls-eye rash. Somewhat like Valentijn, I started developing odd symptoms but shrugged them off until more symptoms appeared and increased in severity. The bulls-eye rash itself is evidence of actual infection in the body, and just that should be sufficient for a Lyme diagnosis.

Another thing to consider is testing for co-infections (Bartonella, Babesia, Ehrlichia, Anaplasma). C. pneumoniae might also be worth testing for - do you have phlegm issues? These tests can be expensive, so I'd recommend being on insurance. Without insurance, these might run $1-2k USD total.

Personally, I came back with a positive IgG on Babesia, so it might be worth it for you to test for. You can do this through a regular lab like LabCorp or Quest. There are other members on PR who also have tested positive on co-infections. I have heard that co-infections must be treated, either before or in tandem with Lyme, to help ensure a higher chance of recovery.



However, it's entirely possible that your issues may have been caused by something else. Have you had a basic battery of tests run prior? I'd recommend checking B12, iron, full thyroid panel, 24-hour cortisol, CBC/electrolytes, etc. Most of these should be available at a local clinic for relatively cheap with insurance.

I'd recommend limiting the number of tests you do per visit. CFS patients are known for lower blood volume and orthostatic issues. I'd suggest having your blood taken while laying down and having a salt/sugar drink onhand for directly after.

Edit: Saw your post here. Are you still having cortisol issues? Did they check for adrenal/pituitary tumor via MRI or CT scan?

 

[KimmyB]

The Yasko/Genetic Genie CBS SNPs have no or very little impact. They would not be causing symptoms. It's also unlikely that the common MTHFR mutations would have a noticeable impact. Most people have at least one of those mutations, yet most people are not unhealthy. The major impact comes in the form of birth defects in a fetus where the mother has a MTHFR mutation but has not been supplementing folate or eating a lot of vegetables.

@Valentijn, this confuses me. CBS SNPs have very little impact? I don't understand how that's possible. If my guesses are correct (and should soon be verified via a methylation test I just had done), I've got a problem with CBS upregulation... which would mean I've got a lot of sulphur, ammonia and taurine hanging out in my body. How would those things not cause symptoms of some sort?

And then secondly... I am compound hetero for MTHFR, and I can't supplement MF currently as it gives me hives. (Likely due to the CBS.) Does this mean I would very likely have a child with birth defects if I were to get pregnant now? (I know we can't know for sure, but odds are...?)

Until ME onset 4 years ago, 20 years after Lyme exposure, I was able to go to school or work full-time. I had mysterious and frequent health issues, but they were mild enough to ignore or went away after a couple weeks.

Have you been confirmed to have Lyme since then?

IgeneX Western Blot IgG and IgM (#188 and 189 on their test form, I think) was a little over $200 for me. That was without insurance.

I had the blood drawn, it was indeed IGeneX, and it cost me roughly $1500 to get the "Complete Lyme Panel" (Western Blog IgG, Western Blot IgM, Lyme IFA, PCR Serum & Whole Blood), and the "Western Regional Complete Co-Infection Panel with Bartonella FISH (B.duncani IgG & IgM, Babesia FISH, HGA IgG & IgM, HME iGg & iGm, Bartonella IgG & IgM, Bartonella FISH). It's not covered here in Canada at all, so this was all out of pocket... thank God for credit cards, that's all I can say.

I'd suggest going on a "challenge" for about a month prior to your testing, to increase your chances of getting a reaction on bands.

Ahh, too late. I had already gotten the blood draw by the time I saw your suggestion. But thanks.

The bulls-eye rash itself is evidence of actual infection in the body, and just that should be sufficient for a Lyme diagnosis.

My rash was not a traditional bulls-eye. But here's the problem... when I first got sick, I had NO idea what was going on and didn't put two and two together on anything. So, if it was/is Lyme... I didn't know enough to pay attention to the rash. I'm not sure when it started, it may have started well after I first got sick and not be directly related to what's wrong with me now. I WISH I had the foresight to take a picture of it or even make a note of when it first showed up. But I didn't. So it may or may not be related.

However, it's entirely possible that your issues may have been caused by something else. Have you had a basic battery of tests run prior? I'd recommend checking B12, iron, full thyroid panel, 24-hour cortisol, CBC/electrolytes, etc.

Basic battery? lol. Oh yes. It's been six and a half years since I first got sick. I've had more tests run than I can remember. From basics to comprehensive and unusual, I've had every bodily fluid tested and more... urine, blood, stool, saliva... I've had MRIs,CTs, I've had neurological testing... you name it, I've had it.

Saw your post here. Are you still having cortisol issues? Did they check for adrenal/pituitary tumor via MRI or CT scan?

I've been on 25mg of Hydrocortisone since September and am currently in the slow weaning phase to try and get off of it. I doubt my cortisol is doing much better despite the "rest" my adrenals have had over the past several months, but it's because my thyroid is also running low and those two are intricately linked. It's all being worked on but it's tough when the underlying cause hasn't been figured out yet.

I'm only just now learning that steroids can kick up the infection... maybe an accidental benefit, prior to testing. Hard to know. We'll find out hopefully later this week or next week, when the results come in. I'm half hoping I have it so at least we know what the heck has been going on for six years... but then obviously it's insane to say I WANT to have Lyme. Ugh.

 

[Daffodil]

I am in canada. A few years into my illness, i had a prominent infectious disease specialist here tell me i did not have CFS because i was just shy of being sick enough to qualify...meaning i was at 60% functionality instead of 50% or something at the time. He said that based on that, i could not have CFS, despite my having gotten ill after "mono"! Do not listen to any idiot "expert". You know when you are sick.

I would not bother with any of the Lyme testing other than the LTT ELISPOT for Borrelia from ARMIN labs. It does not rely on antibody production or PCR. I was negative for decades at every lab including Igenex but positive with LTT.

xo

 

[KimmyB]

I would not bother with any of the Lyme testing other than the LTT ELISPOT for Borrelia from ARMIN labs. It does not rely on antibody production or PCR. I was negative for decades at every lab including Igenex but positive with LTT.

Well, I already did the IGeneX test so it's too late not to bother with it. What is the difference between that testing and the LLT ELISPOT for Borrelia? Why is that one so much more reliable?

 

[Valentijn]

Well, I already did the IGeneX test so it's too late not to bother with it. What is the difference between that testing and the LLT ELISPOT for Borrelia? Why is that one so much more reliable?

The LTT Elispot has been assessed for accuracy, so the both the rates of false negatives and false positives is known, and look quite good thus far. The results were published, however the authors are also the people who run the lab which uses the test.

 

[Valentijn]

@Valentijn, this confuses me. CBS SNPs have very little impact? I don't understand how that's possible.

Most SNPs in the body are not having an impact, regardless of which alleles someone has. For the CBS SNPs listed by Yasko, there is no research showing that A360A or N212N ever have any impact at all. For CBS C699T she actually reports it backwards, and it's the GG genotype which has a (very) mild elevation of risk.

There are CBS SNPs which do have an impact, but that is due to serious down-regulation of the gene resulting in slower activity of the enzyme which it creates. There is absolutely no research anywhere showing that up-regulated CBS is ever a problem, with the possible exception of Downs Syndrome patients who have three copies of every gene on that chromosome.

If my guesses are correct (and should soon be verified via a methylation test I just had done), I've got a problem with CBS upregulation... which would mean I've got a lot of sulphur, ammonia and taurine hanging out in my body. How would those things not cause symptoms of some sort?

The two are not connected. You have 3 billion SNPs, and there is no reason at all to single out a CBS SNP to blame for symptoms anymore than any other SNP. The research shows no correlation. But that doesn't mean that you don't have a set of symptoms which Yasko has chosen to randomly blame upon CBS. It just means that there is no connection between the CBS SNPs and the symptoms. For example, many people have that set of symptoms, but are -/- for all of the relevant SNPs. And others don't have those symptoms but are +/+ for all of those SNPs.

My concern is that advice intended to slow down the functioning of CBS is potentially harmful. Dietary sulfur is a very necessary thing, and the CBS pathway also leads to glutathione formation. Slowing down glutathione production really seems like one of the most senseless things to attempt to do in the body. And raised homocysteine might also result if successful in slowing down CBS, which is associated with increased risk of many serious diseases, firmly established in a great deal of published research.

And then secondly... I am compound hetero for MTHFR, and I can't supplement MF currently as it gives me hives. (Likely due to the CBS.) Does this mean I would very likely have a child with birth defects if I were to get pregnant now? (I know we can't know for sure, but odds are...?)

You can't know if it's a compound mutation, based on 23andMe data, unless one or both of your parents were also tested and you can look at their results. So your MTHFR enzyme activity is at 30 or 65% of optimal (68% seems to be the average in the general population). At any rate, the studies I've seen involving birth defects and MTHFR status have shown that there is increased risk of birth defects when the mother has significantly decreased MTHFR activity. However, a couple studies also indicate that either supplementing a normal (400-800mcg) dose of folic acid or eating a diet with a good amount of vegetables completely corrects for that risk and makes it disappear.

So if you can't take even a small dose of folate such as is in a multi-vitamin, eating vegetables is probably good enough to correct for the MTHFR-related risks. But if you are sick, especially if Lyme or another infection is a culprit, then those can definitely cause problems with the fetus. At the very least, it's something you should probably discuss with your doctor before attempting to get pregnant - treatment can get pretty complicated during pregnancy, as many antibiotics and other drugs are then unsafe to use.

 

[Dufresne]

Well, I already did the IGeneX test so it's too late not to bother with it. What is the difference between that testing and the LLT ELISPOT for Borrelia? Why is that one so much more reliable?

I'm from Canada too and had to pay for Igenex out of pocket, but I'm glad I did. I tested for co-infections as well and came up positive for babesia. I can't tell you how important this little bit of information is. Co-infections always have to be considered. You can't get that from just the LLT ELISPOT.

@Valentijn, you mention the "stretch marks" and my understanding is that this symptom is probably even more common in bartonella. Have you tested for co-infections?

 

[Valentijn]

@Valentijn, you mention the "stretch marks" and my understanding is that this symptom is probably even more common in bartonella. Have you tested for co-infections?

Yes, it's a trademark symptom of Bartonella, and I haven't heard of it being associated with any other infection. I tested negative for it and other Lyme co-infections, but even mainstream medicine admits that there's around an 80% false negative rate. So out of every 5 testing attempts on a patient who is infected, only 1 is likely to turn up positive.

The best way seems to be getting a tissue sample from one of the marks, but I'm not sure many labs are equipped to test tissue samples versus blood. Dr de Meirleir tried to get a little blood out of my newest marks, but there wasn't even a drop coming out. It's being tested for again now in blood from a vein, so maybe I'll get lucky ... a positive test for that might be useful in dealing with the Dutch medical system and health insurance.

I am being treated specifically for Bartonella, based upon the marks and being positive for Lyme as a co-infection.