I just don't know what to do

[dolfnlvr]

I have an appointment with my LLMD on Tuesday, and I'm really at a loss for what to do at this point.  I've had the iGenex testing--which came back negative.  I've had the standard testing, which came back negative, even the LLMD wasn't "sure" this was Lyme, but it was "acting weird enough to be Lyme."  But then I got a positive result from a company called Neuroscience that stated that I had specific Bb proteins and a measurable cytokine reaction to Bb thus deeming me "positive" for Bb infection.  So off I went with over 1000mg of amoxicillin plus azith and probenicid daily.    But I've continued to do research and I can't find any definintive research supporting the testing that I had done as diagnostic and widely used or accepted, even by LLMDs, and with all the other tests being negative...well...

Meanwhile, I got a diagnosis of migraine associated vertigo (another "controversial" diagnosis) which upon reading the description of symptoms fits so much more closely than Lyme.  Of course, one asks, well, what in the heck is causing me to suddenly have migraine when I've never had any problem like this before in my life?

Now, it has been nearly 3 months on Abx and I feel very nearly the same as I did before--not a bit of difference in the positive or negative direction.  I did have a bout of TMJ mixed in there, but otherwise, I've just been the same headachey, drunken brained dizzy headed and extremely sleepy/fatigued as I was before I started.  So it keeps coming back to the same things--Lyme, CFS or MAV (Migraine associated vertigo)--none of which are totally accepted by the mainstream, and none of which have clear cut answers and/or treatments that will "fix" me.  

Meanwhile--I have a decision to make--keep treating for Lyme, a diagnosis of which I am increasingly suspect, or stop with the ABX and risk not treating something that I actually might have and could become even worse over time if I do nothing.

I don't doubt Lyme is out there or that it could have been me and I definitely don't doubt any of you--don't think that.  I just have never been convinced that my test results and symptoms clearly drew a picture of lyme, and since I haven't experienced what I have come to know as Herxing and since I haven't had what I would call a breakthrough in the fog after two months of high dose abx treatment I am really considering stopping treatment. Then again, what if I'm wrong.

But if it ISN'T Lyme, and I keep treating, then I am taking all the risks with the high dose ABX and there is no payoff/benefit.

This disease is so frustrating--first, trying to figure out if you actually have it, then trying to figure out when it is "safe" to consider yourself "treated" or ready to move on with the search for what is wrong.

Grrrrrr

[JasonMChicago]

I agree with Niko... abx can cause problems especially if this is late-stage Lyme (more than a couple months after the bite) because your body is already weak fighting an infection/multiple infections.  As you explore what to do I would consider (this is my opinion I'm not a doctor but just saying what I would do if I was in the same situation).  I would take high-dose vitamin C IV weekly.  Talking about 50 grams. This helps with immunity/connective tissue/collagen/chelation/etc.  No harm there.  I would also look into some alternatives to abx that don't build resistance.  No matter what I would also take probiotics.  Lots of them since the abx kill both "good" and "bad" bacteria.  If your DHEA levels are low, you have low carbon dioxide, low magnesium levels, you have low testosterone (male), you have EBV or Candida antibodies... then you probably have Lyme+ too.  That's my two cents. :)

[Ricobord]

I have had a lot of stomach and intestinal pain in the last 9 months or so. What started as loss of appetite progressed into serious pain and bowel problems. I fit the description of Dr. Sherr's Bell's Palsy of the Gut very well.

My doc likes to do a GI analysis from Metametrix for patients with GI symptoms.  That's how we found that I had parasites, h.pylori, campylobacter, yeast, and insufficient probiotics.  I have taken Xifaxin, PrevPac, Nystatin/Diflucan, and Klaire Labs Complete Probiotics for these.

It's done with a stool sample.  You can check them out at www.metametrix.com if you'd like.  A friend of mine who is married to a doctor and has kids with lots of allergies and GI issues was impressed with the report from Metametrix.  She asked who ordered it because she knew most doctors wouldn't even know or even be interested in ordering such a series of tests.

Another question... have you been checked out for Celiac Disease? The blood tests are not definitive. I don't know if it can cause TMJ, but it can cause the other symptoms.

[JackieCalifornia]

We'll be here, sitting around the electronic kitchen table, where all important conversations are done.  Fingers crossed for you (X) !

[dolfnlvr]

Thank you all so much for the advice and information.  I will take it all to heart and discuss much of it with my LLMD next week.  I have been tested for Babesia and Myco, but not Bart, I'm not 100% on some of the others.  I know I had--and this is NOT an exaggeration, this is exact count--18 vials of blood taken on my first visit to the LLMD and 7 taken on the second visit.  I was also sent to LabCorp for more generic screening for thyroid, CBC, EBV, Strep , ANA titer, antibody Lyme test and the like.  I've had two MRI's one without and one with contrast--they were normal (THANK GOD) and a complete cardiac workup including nuclear stress test--also normal.  I've been to an optometrist who did a complete eye exam and scan for damage associated with brain dysfunction, diabetes, high BP, glaucoma etc--I have 20/20 vision and a beautiful retinal scan--no scarring and no sign of illness.

My blood glucose levels have been checked numerous times--all fine.  I'm not diabetic or hypoglycemic.  

So, what are my major complaints?  Fatigue--progressing through the week and peaking by Friday of any given week (I get at least 7.5- 8 hours per night).  Intermittent nausea.  Headache.  Fogginess/tippsy feeling.  Full blown, ground tilting vertigo at times.  Intermittent TMJ (not severe).  Exercise intolerance (I was exercising for 40+ min 4-6x per week unit this "thing" hit me...now the prospect of leisurely walking a 5K sounds exhausting and would likely take a week of recovery).

You guys really are a great support group--I'll let you know what the LLMD says after our appt Tues.

[JackieCalifornia]

Excellent points.  I got a systemic fungal infection that the LLMD did not recognize for quite a while.  Managed to beat it, however, with a serious change in diet and a lot of Diflucan.  Not a pretty thing, but worthwhile.

I suspect a genetic susceptibility to fungal infections runs in my family, looking back.  So it happens, and it was not pretty.

[TheLightSeeker]

1.False negative for Lyme Disease from IGeneX, IS possible.
There's no Lab 100% accurate!
2. 3 months on  ABX  treatment WILL cause intestinal flora imbalance,
possibly Candida Albicans overgrowth  with “drunk like” symptoms, fogginess, dizziness, and more, as one of its main toxins, acetaldehyde, through the liver gets transformed to ethanol which interferes with the pathway of acetylcholine synthesis, one of the brain's major neurotransmitters, and  may cause the  impairment of  many brain functions.
This imbalance can eventually escalate to a systemic neuro-myco-toxic infection.
The prime targets of this type of infection are usually the nervous system
and the muscular system, however, any genetic predisposition, may  result in impairment and damage of any organ, any tissue, any part of the body.

Last year I attended a conference where renowned Neurologist David Perlmutter said:  Candida Albicans has been associated with Hyper Immune Diseases and MS!
So screening for this is imperative and a comprehensive anti-fungal
treatment  absolutely necessary, if positive.


3. No ABX treatment can be successful when treating  infectious conditions such as borelliosis, bartonella, babesiosis, mycoplasma, without a strong immune system. The ABX action is mainly bacteriostatic and limited in  bacteriocidal activity . These pathogens are extremely evasive*, using cellular dna, disguised in cellular membrane, thus the immune system,
is unable to track them and tag them for destruction. Only when their
growth and movement is stopped by the ABX (bacteriostatic action),
given enough time a non-compromised immune system will detect them and destroy them.
* Even with the high sensitivity of IGeneX testing, you can understand that it is possible - as rarely as it might happen-to get a false negative result.

LLMDs and IGeneX are just good Partners (mostly) in your pursuit of
proper dx and treatment. That means that you have a responsibility
to be informed, knowledgeable, proactive and supply the greatest support possible in form of good nutrition, fitness (including emotional and mental),
prevention and above all, making the right decisions.

Cheers!
Niko

[Ricobord]

I will throw in my two cents... If it's worth that much! ;). Some are repeats of what is already posted above.

Your questions are very valid.  But there are some reasons to hang in there.  

* Not all meds work on all people.  (I am on probenecid, too. It was prescribed for me with my Bicillin shots.)  Some people see little to no benefit with oral abx, and only start to improve with IV.

* Some people don't show much change in the beginning.  I read one guy's story where he didn't start feeling better until 6 months into treatment.

* Not everybody herxes.

* Coinfections can interfere with Lyme treatment, especially Babesia. My LLMD tried me out on two different herbal treatments for Babesia (Crypto Plus and Artemisin) to see if I had any reaction.  I didn't and we have concluded that my very persistent shortness of breath and air hunger is a less common symptom of Lyme.  When a patient who seems to have Lyme is not responding to treatment and other possibilities have been explored, look for coinfections. Babesiosis, Bartonella, Ehrlichia/Rickettsia, and Mycoplasma can all be silent or hidden infections.  The only evidence of Bartonella I had were a preponderance of neuro and gut symptoms.  I developed anxiety from Bart, but that is also a common symptom of Lyme.  Thank goodness I tested positive for Bart at IGeneX, or we might not  have figured it out for awhile.

* Not everybody has joint or muscle pain.  I haven't had either one.  I am truly a case of predominantly neurologic Lyme. (And no, we are not the rare unicorns as the IDSA would say we are.)

Have you seen the LymeMD blog?  He is in Germantown, MD. (I can PM you his name if you'd like.) He calls himself a family physician who is Lyme aware.  He goes to ILADS conferences, but doesn't want to call himself an LLMD. He has written blog posts about how not everything is Lyme, so he's not one of these 'only has a hammer, everything looks like a nail' kind of guy. (The particular post I remember is of a patient who had a systemic yeast infection with Lyme-like symptoms.).  Perhaps if he takes your insurance, he could be a helpful second opinion for you.

If you are seriously doubting the Lyme diagnosis, you could always try going off abx for a month and then doing the culture test at Advanced Laboratory Services.  I read somewhere that their accuracy rate is about 95%, which is better than a Western Blot.

[JackieCalifornia]

PS re something you put in an earlier posting that I meant to comment on:

"And--off to GYN and an endocrinologist early next month to see if hormones are wacked out thus causing it all somehow."

It might be the other way around:  Lyme is known for mucking with hormones and the whole endocrine system, rearranging the furniture and tuning the thermostat just to suit itself.

It's Lyme's way of controlling its environment.  Bossy little creep, isn't it.

Once my Lyme was treated, the rest of the stuff sorted itself out for me.

For a while, I was on thyroid supps because my thyroid was so wacked out, but eventually I realized I didn't need the supps any more and haven't used them for a year+.  

Everybody is different, tho, so you're wise to keep an eye on it now and over time.

[JackieCalifornia]

Well said, dolfie.  I agree.

[mojogal]

I am from Northern VA and I got my Lyme from there. Like Jackie said, getting tested for co-infections is a must. I have barts and many neuro symptoms, I had many false negatives tests for Lyme, it took a friend of mine several years for hers to show positive for Lyme. She is a nurse and describes it in very simple terms, the little buggers like to hide, if they pop up during a test, you get a positive but if they are hiding you get a negative, it doesn't mean they aren't there.
Btw, there is a top notch LLMD in Fairfax, VA, if you are interested, send me a note and I will give you the info.

[JackieCalifornia]

Okay, I hear you.  Your doc does sound like a keeper.  But even keepers have blind spots.

Sorry, I may be missing it here in a quick read through again, but were you tested for any of the other garbage the ticks can carry, like Bartonella, babesiosis, ehrlichiosis, whatever?  Those can be just as bad or worse on the symptom front as Lyme but are totally different animals when it comes to testing and treatment.  I've read that maybe half of all Lyme cases and actually Lyme plus one or more co-infections.

Since the doc seems openminded, I'd have the convo with her about 'Okay, let's think bigger thoughts here.  Let's run down the list of possible coinfections and figure out if there is any wild reason they could be complicating the diagnostic picture.'

And if that comes up dry too, then suggest moving to a different drug regimen, since this one's not doing much for you.

Sounds like something is going on that isn't being nicked by the current meds, so I would definitely focus on this at the next appointment.  Many docs I would go around rather than address directly, just based on the general pigheadedness of docs I have encountered, but your doc seems reasonable, so she should at the VERY least walk through her rationale with you *in detail* with her reasons for wanting to stick with the current treatment approach if that is still her recommendations.

I had pretty bad Lyme brain too .... my SPECT scan was a mess.  But first the doc treated me for babesiosis and then moved on to the Lyme (tho there was I think some effectiveness against Lyme in the babs treatment due to senstitivity overlap).  

In the meantime I'd keep taking the meds rather than stop, which could get ugly if the meds are holding the bugs at bay even if not defeating them.  If you've got the energy or your hubby does, do some digging current treatment approaches so you have something to talk to the doc about.  Switching up meds is not a bad thing if progress is stalled.

[youvegottobekidding]

I have to say I'd also be getting a bit sceptical about lyme in your position and personally I'd want to reopen the dreaded pandora's box of considering all the heaps of other things it might be.
It's so frustrating when you know you've got something but don't know what, and the doctor is so gormless he leaves it to you to figure it out.

How extensively have you been tested for other things, like for example:
cortisol levels (Addisons disease)
thyroid levels
brains scans (sorry but the worst has to be considered too)
leukaemia
ANA titers (considering lupus or other autoimmune possibilities)
toxoplasmosis
neurocysticerosis
syphilis (don't be offended, you can catch it from saliva)
anaemia (there are many wierd types)
hemochromatosis
West Nile virus

I went through all this list and more before eventually finding out I had lyme!
These illnesses can all start very gradually and have few specific symptoms you could list other than knowing you feel ill and that something is wrong.

I'd also consider trying to see an immunologist to get your immue sustem checked as that could give important clues.

Sorry if you're reeling from all that I've thrown at you! It's just supposed to be food for thought.

[dolfnlvr]

Yeah--it does help.

The probenecid is a drug that is known to decrease the body's ability to filter out amoxicillin--thus increasing the level of antibiotic that is actually carried in the blood.  It is just a booster drug--and it doesn't really do anything with Doxy or other abx, just amoxicillin, so the LLMD used it with me to try to get my levels up high enough to be near an IV level without having to do IV.  She was trying to cross the blood/brain barrier with the antibiotic because of the CNS involvement.

I can't complain really about the LLMD, she's been really thorough, and she has been patient with me too.  When I question the Neuroscience testing she didn't try to push it, she just explained that it is a newer test that is out there that they have started to use, but no, it isn't "definititve."  Also, the fact that I live in rural eastern shore MD and am an active outdoorsy type with 4 lyme infected dogs and a previous positive antibody test for lyme (7 years ago) made her lean toward thinking that all these weird things may well be Lyme related.

I guess I'm just frustrated since I haven't even had a glimpse of improvement.  You know how this all goes--the not feeling well is bad enough, but the treatment has side effects and the hubby, though really really supportive, has definitely put up with a lot since last July.  

Last blood draw included all the metabollic panels but also another HHV6 and EBV test along with another STREP TITER because all were weird but not crazy weird on the first go round--this LLMD was a skeptic of Lyme pre-her family getting hit with it, so she seems thorough on all sides.  I'm planning to keep the appointment no doubt, but I'm just so frustrated.

And--off to GYN and an endocrinologist early next month to see if hormones are wacked out thus causing it all somehow.  

I just can't shake it though--there are three things that come up EVERY time I start looking for what this might be--they are LYME, CFS and the MAV.  But both the Lyme and CFS say there is usually sore joints, and I haven't really had that sans the sore TMJ that comes and goes.

I'm venting I guess.  A rash, some sore joints, some sure sign would be so helpful, but as it is I just feel tired, fuzzy, vertiginous and on the verge of coming down with something most of the time--and full blown "sick" other times with very very VERY few, and becoming fewer still, OKAY days between.

Thank God in a way because it could be so much worse--but it could also be so much better.

[JackieCalifornia]

I would be thinking the same things you are thinking, and bravo to you for continuing to 'work the problem' as the engineers say --- going over and over things till you figure them out.

Were you tested for co-infections that the Lyme ticks can carry?  It's possible you have one or more co-infections and not Lyme ... I mean, why not?  

If you've been infected for a long time, sometimes the test results are less than positive.  I don't know how it would affect the IgeneX tests, tho, because they are supposed to be measuring not your immune system reaction to an infection.  It's possible perhaps that you have a strain of Lyme that doesn't show up strongly on the current tests.

The antibiotics you are on may not be effective for whatever reason.  Different immune systems, different strains of Lyme, different coinfections, all create a lot of variability in results.  I do not anything about probenecid ... is it intended to help the other two antibiotics penetrate the biofilms the Lyme bacteria can hide in?  Amoxicillin and azithromycin and probenecid is not a combo I remember reading about.  The few things I just saw about probenecid online are pretty old and your doc may not be up to date on current treatment approaches.  A paper posted on ILADS.org that mentions probenecid and amoxicillin seems (on quick reading) to be focussed on treating very recent infections.

If you have coinfections or an established Lyme infection, then the meds you are on may not be effective.

Migraine-associated vertigo sounds like a condition (that is, a collection of symptoms) rather than an illness or an infection.  So I wouldn't let classification that slow you down in looking for a cause.  Meaning:  what's the cause of the MAV, not just that you have it.  And the cause of all your other symptoms too.

In your situation, I would go to the follow up appointment, listen to the doc, take notes (or have someone go with you to take notes), get copies of ALL the tests that have been done, see what the doc recommends as next steps, then say thank you, and **go find a second opinion** from another LLMD.  Even the best docs have their off days and blind spots.  Your current doc has no reason to have to know that you are going for a second opinion.  That's your private business, and no point in ticking him off.

Clearly something is going on with you, and you are doing all the right things, it's just that medicine is a mystery and takes several detectives sometimes.  

You say above:  "Meanwhile--I have a decision to make--keep treating for Lyme, a diagnosis of which I am increasingly suspect, or stop with the ABX and risk not treating something that I actually might have and could become even worse over time if I do nothing."

I would go with a third option:  keep taking the abx for now while you get in to see another LLMD, take all your test results and notes of your history so far, and see what the new doc says.  

I would have exactly the same concerns you are having -- and bravo to you for continuing to 'work the problem.'   Does that help?  Take care --

[mojogal]

I would keep my appt with the LLMD and let him/her guide you. In addition, IgenX does many tests, do you know which ones you took? I only did the co-infection testing so far and it came back positive for Barts. The LLMD should be able to tell you if they think it is Lyme or not and so you would not be wasting time on high doses of abx and would know once and for all if it is or isn't. Just my opinion and good luck in whatever you decide.