Lyme Symptoms

[jackn123]

I had chronic fatigue syndrome 22 years ago which lasted for a year and then subsequently I developed multiple chemical sensitivity.  For the last 22 years I've had to avoid certain chemicals/places but have lived fairly normal.  About 6 months ago the chemical sensitivity got severe after exposure to a certain chemical and now I have depression, confusion and sensitivities mainly around certain chemicals.  I have no fatigue or joint issues.  Because this has been going on for so long I saw a physician two weeks ago who is running a bunch of tests for toxicity but we also discussed Lyme.  he didn't think I had classic symptoms but is running the tests anyway, one of which is CD57.  I haven't followed up with him yet but was able to see the Labcorp CD57 result online which was a 32.  My question is does it seem likely that I would have Lyme with the primary symptoms being neurological (confusion, depression) and gastrointestinal issues, with no fatigue or joint issues?

[JackieCalifornia]

In a few minutes, I will send you a 'private message' through this website, instead of a public message like this one, to answer some of your questions.

If you look at the top of the main page of this website, you will see a blue band.  The 4th button in the blue band is called 'My Medhelp'.  

Hover your 'mouse' over that button, and a list will drop down.  The 6th item in the list is 'Inbox' and there will be a number telling you how many private messages you have:           Inbox (1)

Click on that and your message(s) will show.  

[jackn123]

Actually my doctor had given me a copy of his approach to testing, treatment that he had.  In it it said something about co-infections not being accurate.  I'm not certain what the source of his information is.  I think he is trying and actually he may be more experienced than I am aware of but now that I have a fairly supportable diagnosis I want to proceed with the most experienced doc I can see.  That would be great if you would not mind giving me the name.  I'm not sure how to do a private message on here.

I just want to say thanks again for taking time to respond to all of my questions and concerns, and with such great explanations.  It is really appreciated.

[JackieCalifornia]

I agree with your analysis of the situation.  The doc sounds willing, but maybe still groping his way through learning about Lyme and the co-infections.  That's one of the sad parts of the way Lyme is split between those who understand it and those who say it's nothing to worry about -- it isolates docs from each other instead of everything being out in the open so it can all get sorted out in true scientific fashion.  The important thing is that you already understand the mess that the medical profession has made of this so far, and have found a doc who has possibilities.

About the co-infection tests not being accurate, that's not something I've read.  Lyme tests can be iffy, but mainly the older ones like ELISA and Western blot.  They are still useful, to a doc who understands the limitations of the test structure, but they're not like a yes/no pregnancy test.  

Co-infection tests I have not read to have those problems, because they are not relying on iffy indicators like the traditional Lyme tests do (ELISA, Wblot).  [I would be interested in reading what you've found, if you could send where to find it.  URLs get blocked here by the system, so a private message would work unless you just send the author's name and title of the work here in the open.]

But back to your doc and Lyme.  I hear you about your doc perhaps not being the most experienced doc in the bunch.  My doc always handed me a copy of all test results to take home, so I have a complete set of mine ... whether all docs do that, I dunno, but if they don't offer them (hey, toner's not cheap!), then just ask.  I think by law they have to give them to you.  I always smile and say "It's for my records at home."    

You could ask to be put on the waiting list at several other doc's offices.  They don't know you're doubling up.  

My doc is in California.  He has patients who fly in to see him, based on the traffic I saw in the waiting room of people whose 'flight was late'.  After the initial appointments, I saw him about once a month.  If you're interested, I will send you his name in a private message through this site.  He's not exactly a secret in the Lyme world, but as a matter of protection for docs who live in states where the medical boards are always out to scalp an LLMD for the crime of treating ill patients (/sarc), we don't post MD's names in public here as a rule of thumb and protection:  there already aren't enough good Lyme docs out there.

[jackn123]

My doc is running an additional test through Immunoscience Lab but I'm not sure which test.  I think he is still trying to confirm diagnosis (?).  I did ask his nurse if he could check to see if I should test for co-infections and he told her for now no.  I didn't get an explanation since I didn't have an appointment but only went in to draw blood.  From what I have read it sounds like co-infection tests are not accurate anyway (?).  It will be four weeks before I get the Immunoscience test result back.   I'm not certain how much experience my doc has in treating Lyme, etc.  I got his name off of a Texas Lyme Disease Association list, but I was told he had recently asked to have his name added.  I'm not sure he is truly an LLMD, at least at this point, so I'm not certain if I'm going to stick with him.  I think I've gotten enough back on the CD57 and Igenex to say that there is something there.  So if nothing else I was able to get a diagnosis through him.  I think I'm going to start looking for a new doc.  I only had a couple here in the Houston/Louisiana area and have long waiting lists.  I'm willing to travel so if I could find an experience doc somewhere in the US that would be great.  Would you be able to disclose which doctor helped you?

[JackieCalifornia]

Yes, the various infections sometimes/often need different medication from what treats Lyme.  I had Lyme and one co-infection, and the doc first treated the co-infection I had until it was gone (it was a sure kill), and then treated me for Lyme, which can be sneaky and need some bobbing-and-weaving to nail it once and for all.  Every doc is different, but I think is probably a fairly common approach.

[jackn123]

Will do..  Is treatment different for the bacteria that cause Lyme versus co-infections?

[JackieCalifornia]

You're quite welcome.  I remember well being where you are in the dance with Lyme.  It was actually a relief to find out I had it -- so I could get rid of it!

Any doc who is wise enough to test for Lyme through IGeneX is a good sign, so I'd give him the benefit of the doubt on where these other tests are run.  I am not up to date on the CD57 aspect, but my hazy understanding is that it hasn't lived up to the hopes of docs for it to be very useful; it's been demoted to 'possibly useful', I think, but again, I'm not up to date.

Because maybe half of us with Lyme also have one or more co-infections, I would be inclined to ask at the next appointment if the doc is considering testing for any co-infections, and if the answer is no, then ask his reasoning.  The answer would probably be, "Because you don't exhibit any of the symptoms of other infections."  Reasonable answer.  But you deserve to have your question answered, and it doesn't sound like this doc is likely to get all huffy if you ask.

Very glad you are making progress.  It's a hassle in every way, but definitely worth it and more.  I'm now several years post-Lyme and babesia, and oh boy it's good!  Keep us posted!

[jackn123]

Thank you for all of the information.  For all intents and purposes it sounds like I likely do have Lyme, also taking into account the low CD57 result.  The other test that my doctor was running was, I believe, something to do with T-cells if I understood what he was saying.  It was from a different lab - not Igenex.  He hasn't mentioned co-infections to this point.  When he asked the nurse to draw the blood for this additional test he mentioned what he was doing and he told her he was 60% sure on the diagnosis.  He told me that he thought there were too many things pointing to that to not be Lyme.  

Again, thanks for taking the time to respond.  I really appreciate it.

[JackieCalifornia]

Your doc sounds quite thoughtful -- that's good!  

I wouldn't worry too much about the CDC result on the tests -- they were, iirc, established not for diagnostic purposes, but for epidemiological purposes -- tracking the spread of Lyme disease.  For tracking data like that, it's important that only absolute, 100%-certain positives be included, so that the studies are scientifically reliable.  That level of certainty is not required (and should not be) when diagnosing and treating a particular patient.  So big points to your doc to knowing that -- too many docs don't, even some of those who call themselves Lyme specialists.

I wonder if the additional test being run is for a possible co-infection -- other, separate diseases that the Lyme ticks also carry about half the time.  Will be interesting to see what comes back, and again, your doc sounds quite thorough.
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     You say: "IFA (Immunoflorescene Assay) was 40 which is 'equivocal'.  The reference ranges are 80 Positive."

My doc didn't use this, but overall, the rule of thumb on many (perhaps all) of these tests is that anything that shows positive should be considered seriously, because if you've got a low-level positive test for a particular infection,  **you've still got the infection.**  Your immune system may be holding it at bay, or some other reason for the low level result.  Again, points to your doc for taking these things seriously.
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     You say:  "2. IGM Western Blot: one band was 'IND' - Band 41"

IgM (short for 'immunogobulin M') are the antibodies your body produces soon after the initial Lyme infection.  After a while, the body switches over to making IgG antibodies.  So if it has been a while since you were infected (and many of us [including me] have no idea when we were infected or re-infected), you will tend to have more IgG than IgM, but there is no magic cut-off date when that happens.  To my understanding, anything positive or indeterminate should be taken into account:  it's *not* a negative result.  Also keep in mind that Lyme is capable of suppressing your immune system, so having low or no immunoglobulins also does not mean you do not have Lyme -- so anything positive should be taken seriously.

IND means indeterminate, or 'maybe yes/maybe no', but there is something there triggering a positive, which should be read in context with all the other test results.
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     You say:  "3. IGG Western Blot: Band 39 was 'IND' and Band 41 had three plus signs next to it '+++'; the interpretation by Igenex says that the scale is 1+ to 4+ so I would think that band 41 is positive."

IgG are the antibodies your immune system makes as the production of IgM ramps down.  

-- Band 39 is a 'major protein of Bb flagellin; specific for Bb' -- meaning only Lyme bacteria have this protein.  ANY positive level of detection of such a protein is a positive indicated, and should be considered as such in diagnosis.  Thus IND [indetermine] still counts as a weak positive, but should not be ignored and should be viewed in context with the other findings.

-- Band 41 is a 'flagellin of all spirochetes; this is usually the first to appear after infection but is not specific to Lyme', because other bacteria in the same family as Lyme can have this indicator.  If this were the only indicator you have of Lyme, then it would be questionable whether you have Lyme or something else, but given that you also have other positive bands that show up ONLY in Lyme, this positive band 41 adds evidence to a Lyme diagnosis.
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     You say:  "4. PCR tests for B. burgdorferi were negative - No DNA detected."

PCR is short for 'polymerase chain reaction', a different kind of test from the ones above.  PCR looks not for your immune system reaction to the presence of Lyme, but instead for bits of Lyme DNA floating around in your blood.  PCR is helpful especially when the W.blot and ELISA tests are negative (which they easily can be, even in someone with a raging case of Lyme).  Why your PCR test is negative, I don't know, but you could ask the doc.  That you have positive on the other tests is still valid, even if PCR is negative.
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     You say:  "My doc also says I have a bad Candida infection and two bacteria in my gut which he thinks is causing a lot of the gut inflammation.  He recommended trying to address this first before anything else."

It's good that your doc is looking out for this.  Some docs don't.  Candida makes you feel lousy and puts a burden on your body and your immune system, so having it treated and gone gives your body a boost to fight the rest of the infections.
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So it sounds like you're on your way to getting well -- yay!  Keep us posted  -- !

[jackn123]

Hello -

I got my Igenex results.  My doctor thinks I have Lyme but he wants to run another test (not sure what it is).  Anyway, here is what the Igenex results are:

-1. IFA (Immunoflorescene Assay) was 40 which is 'equivocal'.  The reference ranges are 80 Positive.

2. IGM Western Blot: one band was 'IND' - Band 41

3. IGG Western Blot: Band 39 was 'IND' and Band 41 had three plus signs next to it '+++'; the interpretation by Igenex says that the scale is 1+ to 4+ so I'm guessing that band 41 is positive.

4. PCR tests for B. burgdorferi were negative - No DNA detected.

For each of the tests (Western Blot and PCR) it states 'negative' for the Igenex result and CDC result.

My doc also says I have a bad Candida infection and two bacteria in my gut which he thinks is causing a lot of the gut inflammation.  He recommended trying to address this first before anything else.

[JackieCalifornia]

I'd wait to see what the doc actually says, and then take the test copies and go home and read them yourself and think it through.  Tests are often written in such a way that it requires interpretation, and what one doc sees as negative, another doc may see as positive. ... And it's interesting that they nurse said 'inconclusive' -- that suggests that the test results is 'not negative'.  And something that is 'not negative' means the test is reacting, but perhaps faintly, but reacting.  Lyme often registers that way on tests.  Not negative = weak positive, but that still means positive at some level.  It ain't nothing.    

So don't assume anything.  And there's the possibility that the doc doesn't often read IGeneX results and is seeing it oddly.  So try to keep a neutral stance for now, go get the test results (full copies, not just a cover sheet!), listen to the doc's interpretation and recommendations, and then consider saying 'Thank you, I need to go home and study these so I understand better and get back to you.'  

Then scurry off to you computer and tell us what the test results say AND what the doc says!  One of the oddities of Lyme testing is that what looks negative to one doc can say something quite different to another doc.  

So try to 'maintain an even strain' as the saying goes, and don't conclude anything yet.  Please share the detailed results with us, if you'd like to.  No one here has a medical license, but we have a lot of opinions and maybe some suggestions of what we would do next in your situation.

So hang on!  The nurse didn't say 'It's negative' -- so there's something there.  Go see what it is -- we'll be waiting here if you'd like to share.  And be sure to ask for ALL the test results, so the office doesn't just give you a summary cover sheet of results or something.  I would always put a friendly face on and say, "Do I have copies of *all* the test results?  It helps me to read it all when I am at home and have time to think it through with my family."  A lot of patients seem not to care and just rely on what the doc says, but esp with Lyme, seeing the paper work is important in my experience.

Hang on!!!  We'll be waiting to hear how it goes.  

[jackn123]

Sorry to post so many questions.  So my Igenex test results came back.  I have an appointment with my doctor on Friday but the nurse today told me on the phone that they had reviewed the results and they were inconclusive.  I asked her if this mean it is likely I do not have Lyme disease and she said I would have to discuss with the doctor during my appointment.  My guess is that whatever test at Igenex they ran it came back negative.  Its my understanding that Igenex tests are fairly accurate but I guess that it could always be a false negative?  If it is accurate then perhaps it is something other than Lyme causing a low CD 57 result.  I'd prefer not to have Lyme but now I am more confused than I was two months ago.

[jackn123]

Thank you for sharing.  Your positive attitude and encouragement is really uplifting.

[JackieCalifornia]

I probably got Lyme and babesia in summer 2006, when wandering grassy areas on the East Coast for several weeks.  Never saw a tick or a rash, so not sure, but when I got home to California, I was not feeling good.  Tired, confused, thrashed.  And it was constant.

It took a while to work my way through 20 docs before getting a diagnosis and finding an LLMD, so I didn't start treatment till about a year after the likely infection date, so that would be spring/summer 2007.  

I was treated first for babesia, which is like malaria, but is carried by the 'Lyme' ticks.  That took ~4 months.  Then Lyme treatment began, and that lasted ~10 months.  Total:  ~14 months.  But everybody is different.  

I never had an 'ah-HA!' moment when I was magically well, so it was a slow crawl out of the depths.  It takes time for the body to rejuvenate after such a battle.  I also had a bad reaction to some yeast-based probiotics my doc insisted on, but it turns out I'm sensitive to yeast and got a systemic yeast infection.  That was part of my slow recovery, but also the body has been through a terrible thing overall, so I tried to sleep well, eat well, walk when I could, but didn't push myself.  I don't know exactly when I woke up and felt 'normal' again, because it was all such a long process ... but *definitely* worth doing, even with the probiotics detour.  

I am totally well, and have been for quite a while.  I find that there are chunks of time and memory that I lost when I was ill, but that is the extent of any hangover effect from Lyme and babesia.  I tend to be sensitive to many meds (and even foods), so I hear you.  I eat a pretty clean diet already, rice, vegetables, apples, bananas, eggs, chicken, milk, and I cook with extra-virgin olive oil.  

If you find that the meds overwhelm your body, tell the doc and ask about adjusting the dose or changing the med(s), but please don't do it without your doc's okay.  That would undermine the treatment plan and could cause additional problems, like antibiotic-resistant bacteria.  The doc can adjust things in a way that won't cause problems, but only the doc can say what that is.  Remember the goal:  to be well again.

Also be sure to give the doc a list of all vitamins and supplements you are taking, and give him/her a new list if you change anything in that regard.  Drugs and vitamins and supplements are all just chemicals, and they can interact in ways that even if not harmful can interfere with your treatment.

You may have heard about 'Herxing', meaning a 'Herxheimer reaction', a temporary increase in symptoms as the meds are killing the bacteria and the bacteria are releasing toxins etc. into your system.  It's usually not too awful, but for some people it is too much, and if that happens to you, *call your doc* but *do not stop or reduce your meds*, because that gives the bacteria a chance to get stronger and drug-resistant.  I am pretty sensitive to lots of stuff too, but had no problem with Lyme treatment, so keep your fingers crossed.

Try not to worry, and consider taking magnesium supplements or Epsom salt baths -- it will help with anxiety etc.  Start low and build up if you think it's needed, but then cut back if it's too much.  Common sense approach.  

Most importantly:  
**Be sure your doc knows all of what you are taking, orally or otherwise.**  

As a wise man once said:  "Be not afraid."  You've come this far, through the worst of it all, and you are on your way back to good days and good times.  There may be some bumps, but it's all part of the journey, and definitely worthwhile.  Keep us posted!

[jackn123]

Thanks for the info on your antibiotics regimen.  I am still waiting on my Igenex results.  Hopefully those will be in this week or next.  Just wondering how long ago you did all this.  Are you still having issues you deal with?  Do you follow a strict diet, then and still?  Thanks for any info you can provide.  I'm still not taking anything (supplements or medication).  I seem to be so sensitive to everything that I'm fearful to take anything because of how I start feeling.

[JackieCalifornia]

The best way I could describe my symptoms was "a combination of the flu and a hangover, 24/7".  Nothing more specific than that.  Just tired, unclear thinking, and like how you feel when you're fighting off a flu bug coming on.

My treatment was several years ago, and things change as new meds come onto the market and the docs figure out new ways to treat.  But fwiw:

Mepron, Zithromax -- 4 months (for babesiosis)
Biaxin, Omnicef -- 5 months (for Lyme)
Zithromax, Flagyl -- 5 months (for Lyme)

I had some problems with some of the meds, so that was partly why they were switched.  New approaches may have made this treatment approach obsolete.  

[jackn123]

My doc seems to understand about the GI issues.  He asked me to start off slow and perhaps crush the pills or capsules into a smoothie.  Not sure about that.  He said that I really need probiotics badly but if I can take a probiotic pill at this point to try Kombucha, some fermented drink.  I'm extremely sensitive to everything.  When I did an IV chelation for him to test heavy metals last month my symptoms worsened for a few weeks and he explained that this probably cause more mercury, etc. to be in my system so using IV treatment, at least for the short term, is probably out of the question.  I feel like I at least have a reasonably good doc because he told me his daughter has Lyme disease so I know that he has a vested interest to find the best protocol that he can.  If you don't mind me asking, what kind of symptoms did you have and what type of antibiotics, or other treatment, did you take, and for how long?

[JackieCalifornia]

I hear you.  I would have the same concerns.  I was pretty worn down by the time I got a Lyme diagnosis, but my Lyme doc was focussed only on killing the bacteria and not on vitamins etc.  I would think it's possible and even reasonable to approach on both fronts -- antibiotics and supplements -- at the same time, but I also would be keen to get moving on killing the bacteria asap.  Did you tell the doc about your gut being in revolt already, and if so what was the response?  Can't hurt to ask.

[jackn123]

I finally saw my doctor this week.  He told me that I have Lyme disease which he is basing off of the CD57 test result.  However, he is testing me with Igenex (his suggestion) to see "how bad" I have Lyme (?).  I guess that I am still not convinced that I have it based solely on CD57 from some of the things I have read online so maybe the Igenex will be more of a confirmation.  He also said that I have a lot of toxicity, candida, etc.  He wanted to start trying to detox my body first before addressing anything else.  I got about 14 different herbs/minerals (reduced glutathione, chlorella, etc.) that he wants me to begin taking.  Seems like a lot.  My big problem is that my intestinal lining is very irritated and any type of supplement I take seems to exacerbate that so I can't really take anything.    

[JackieCalifornia]

Your test results are beyond my ability to comment knowledgeably overall, but the Western blot may show negative even if you have Lyme, because Lyme has the ability to suppress the human immune system, thus it produces no antibodies, and antibodies are what the W.blot looks for.  

Meaning:  a positive W.blot is meaningful, but a negative W.blot (as you have) is not very helpful.

It can't hurt to suggest getting tested through IGeneX -- tell the doc you just want to make double sure.  This doc might still decline, but there are other docs who may well say 'Why not test.'

Let us know how the doc analyzes the whole shebang of tests -- and try not to worry.  Having gotten yourself to a doc and gotten tests done is definitely progress.  Hang on!  ... and keep us posted.

[jackn123]

I was hoping to get your thoughts so that I can ask educated questions on my next doctor visit.  The other tests that my doctor ran at quest diagnostics were posted online today.

I assume that the Lyme test was Western blot (?) but anyway all of the bands were non-reactive.  The antibodies test for mycoplasma for IGG was high (2.93) but the IGM was within the reference range, Candida was high and Epstein Barr was high.  Cytolomegavirus and Paravirus were within the normal ranges.  I'm not certain if my doctor will run additional Lyme test but should I talk to him about running a test at IGenex?  I assume that it could be something other than Lyme such as Mycolplasma that could be the cause of the low CD57 test?

[jackn123]

Will do.  I'm sure I may questions in a couple of weeks.

Thanks again.

[JackieCalifornia]

You're quite welcome.  We've all been where you are in some fashion.

One more thought to plant in your brain as you plan your next steps:  there are, to my view, three kinds of docs who treat Lyme patients:

     1 -- ignorant docs, who think Lyme is the equivalent of the sniffles -- and sadly, there are many of these everywhere, and many of them are blissfully unaware of how little they know.

     2 -- well-trained docs who can be any specialty or none ... my own LLMD is an immunologist by training, but any kind of doc can be a 'Lyme' doc, if they are interested and open-minded (as in:  not ignorant; see #1 above)

     3 -- those who don't know a lot about Lyme but have an open mind.  (This may include your current doc.)  These docs can be very helpful, but Lyme is a tricky witch, and I'd lean toward an experienced doc, because the world of Lyme diagnosis and treatment isn't for amateurs.

My first choice would be #2:  well-trained and well-versed in the ways of Lyme.  Experienced, open-minded, kindly.  

My second choice would be #3:  Not highly experienced, but also open-minded and kindly, and not intimidated by Doc #1, an ignorant doc who doesn't know how much s/he doesn't know.

There is a Texas Lyme Disease Association (TXLDA) which I think is pretty sturdy and could perhaps help you with information about how to find a Lyme doc in your area.  Their tag line is:  

"TXLDA - Texas Lyme Disease Association - knowledge, support, hope."

That's a good start right there.

Also, the doc you are seeing now may be fine, but even really good docs can often have a big blind spot when it comes to Lyme and its coinfections ... and honestly, there are lot of really good docs out there who are simply terrified of the medical board messing with them and so they toe the line about Lyme being hard to get and easy to cure.  So mentally measure your current doc and decide whether to shop for a new doc; or you can do that later if you decide current doc isn't as up to speed as you'd like.

Stay in touch and let us know how you do, okay?  Best wishes!

[jackn123]

I appreciate you responding.  I will take a look at the ILADS site.  

There is definitely something compromising my immune system based on tests I had run last month at another doctor - low T-cells, low IGM, low IGG-subclass 3, positive ANA (nuclear antibody), low platelets, high B cells.  Perhaps this could be the reason.

Thank you,
Jack