Lyme Disease Community
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Avatar universal

Does this sound like Lyme?



Symptom onset- June, 2014: Attack began resulting in vomiting (not out of stomach pain, but out of the sensations) Felt as if needed to go to hospital, but shook it off. Continued happening and has not ceased. No symptoms present before onset (or at least no awareness of symptoms).


-Double Vision

-Tingling in hands, feet, and thighs

-deep pain that feels pseudo flu-like without the accompanying fever/congestion; essentially weakness “deep in the bones.” (particularly rib cage and back). Fatigue/weakness.

-Feels as if my body is pulsating/knocking, with particular emphasis on my spine (middle of back).

-Flare-ups extreme exacerbation of symptoms: tingling in hands and feet, disorientation, feels as if body is snapping/ collapsing inward, feels inflamed in brain and spine. -Constant, all most daily, flare-ups that last from a few minutes to a few days (can have multiple in a day).

-When not “flared, brain fogginess, weakness, fatigue present, but occasionally dissipate and body can return to approximately 90% normal ( on occasion).

-Episodes in which the body feels as if it is spinning (akin to “the spins when intoxicated,” but motor skills and balance are fine). Particular noticeable lying in bed.

-Exercise and heat induce flares; inability to sauna or exercise because attacks ensue/Cannot stay up late or a flare-up ensue.

Tests/ Procedures done(All Normal)

-Extensive blood work

-Mri Head (w and w out contrast), Neck, lower back/ spine (w out contrast).

-CT scan of head and neck, w contrast

-Echocardiogram, EKG

-EMG/ Nerve conduction studies



Although this has been going on for almost 2 years, I am still alive and essentially fine. My motor skills are normal i.e. still can throw a baseball 85 mph, bench press 200 lbs, run. Nothing has ever resulted in a difficult flare-up, but to simplify, I consistently feel fairly bad daily, with episodes that are unbearable.
5 Responses
Avatar universal
Welcome to MedHelp Lyme -- sorry to hear about all you are going through.  The first item on your list is 'extensive blood work.'  One of the oddities of Lyme diagnosis, treatment and management is that the blood tests given to determine whether someone has Lyme (and/or other infections carried by the 'Lyme' tick) are not very accurate and can easily miss finding infection(s) that the patient truly has.  There is a serious split in the medical community about how serious Lyme is or is not, and having had Lyme myself (and also another family member had it), I can tell you for certain that Lyme is a real infection -- and one that can be treated and eradicated -- but first an accurate diagnosis needs to be done.

So:  if you would post back with the names of the tests you had that have to do with Lyme, we can perhaps give you some ideas of where to go next to unravel the mystery of what you may have.   If you can't tell which tests focus on Lyme, then just a list of the names of the tests are a good start.  It's tedious to type all the numbers etc. in the test results, so if you just type the name of each test, then we can tell you which ones relate to Lyme and ask you to then send the results just for those tests.

Good for you for plowing ahead in finding what is ailing you -- we will look forward to the data from you if you want us to take a look.
Without looking at anything ( I will when possible), I had the standard lyme tests and showed no bands. I believe the tests were western blot and ELISA. Again, will post when available but I know I had no bands. Was thinking about igenenex, but wanted to even see if my symptoms were possibly lyme related before I spend some money. Also, if you or anyone else knows of or can recommend an llmd (if symptoms require) in DFW, TX area. So if this sounds symptomatic, let me know.
Thank you for your prompt response! Means a lot.
I was just re-reading your posts so far ... this new MedHelp format makes my head explode, so things are a bit choppy here.  Bear with us, either until this starts to make sense of MedHelp wakes up and realizes Lyme isn't tidy and linear like other ailments often are.
Avatar universal
PS  the list I requested above are for the *Lyme-related* tests only.  The other tests you listed don't need to be sent again or in additional detail at least for now.  

The tests of particular interest now are what you categorize as 'extensive blood work', and any details or additional data on the blood work would be useful -- including the name of the test(s) and the results.  I'm not medically trained, but have been through Lyme as many of us here have done, so we might have some suggestions on how we would proceed if we were in your shoes, fwiw.  
Avatar universal
You say above:  "I had the standard lyme tests and showed no bands.  I believe the tests were western blot and ELISA."  Those two tests are the usual first stop when a doc is trying to confirm or discard a Lyme diagnosis.  If the W.blot/ELISA test(s) are positive, they are generally considered reliable; however, if the test(s) are negative, they may well be a *false* negative, meaning that the test says 'no infection' but there really is an infection in place that needs to be killed off, just as you would do with an ear infection, strep throat, etc.

This 'negative or positive' question (meaning 'no Lyme infection here' or 'yes, a Lyme infection here') occurs because the W.blot and ELISA tests are structured to look in your blood for *antibodies* made by your immune system to kill the Lyme bacteria, but there is a problem with this straightforward view:  the Lyme bacteria can and do *suppress* the creation of the antibodies.  Result:  if the W.blot/ELISA tests are negative (that is, "no infection here"), there may truly be a Lyme infection that just isn't showing on the test, due to suppression of the antibodies that would normally kill the Lyme bacteria.  Tricky, eh.

The bottom line is this:  regular MDs usually use a test that does not accurately confirm a Lyme infection, but Lyme specialists usually use a test that IS accurate in confirming a Lyme infection.  These Lyme specialists are often physician-members of ILADS, the International Lyme and Associated Diseases Society, and they will also likely
          (1) test a patient not only for Lyme, but also for other infections (bartonella, babesia, ehrlichiosis, and a few others, depending on the patient's symptoms and other indicators) that the 'Lyme' ticks often carry in addition to Lyme, and
          (2) use a particular test (offered only by IGeneX Laboratories in California) structured to detect Lyme disease by looking in the patient's blood for genetic material (DNA) unique to Lyme bacteria.  I think of this test approach to be like looking for fingerprints at the scene of a  burglary:  you may not see the burglar committing the crime, but you may find the burglar's footprints or fingerprints where the theft was committed.
In summary:

-- You say:  "Again, will post when available but I know I had no bands."  Comment:  there may be no bands shown even if you are infected with Lyme disease.  
-- You say:  "Was thinking about igenenex, but wanted to even see if my symptoms were possibly lyme related before I spend some money."  Comment:  That's a perfectly reasonable approach, but keep in mind that the sooner you are diagnosed and treated if you have Lyme, the better -- to keep the bacteria from burrowing in and being more difficult to get rid of.
-- You say:  "Also, if you or anyone else knows of or can recommend an llmd (if symptoms require) in DFW, TX area. So if this sounds symptomatic, let me know."                    
Comment:  If in any doubt at all, I would get tested for Lyme; it does not just go away by itself.  TXLDA is the short name for Texas Lyme Disease Association, and they can likely give you names of Lyme specialists near you.
As to cost of the tests and doctor visits, your insurance may cover much of it, or if you don't have insurance, then ask TXLDA  (see above) and also go online at ILADS [dot] org for MDs or organizations who may be able to assist you financially.  Best wishes to you!  

Best wishes to you -- let us know how you do, okay?
Really appreciate it! One last thing, throughout this process I had ben taking minocycline for acne. 115 mg every day occasionally more. I probably started when i was 17 on and off until 21. So, is it still possible to contract a lyme infection if using minocycline throughout?
Avatar universal
Not all antibiotics are effective against all infections ... and minocycline is not something I recall being effective in treating Lyme.  

I just located a website I have not been to before, titled "Doxycycline vs Minocycline for Lyme Neuroborreliosis".  Here is a section from it which seem fairly reasonable; you may wish to read the rest.

"Minocycline and doxycycline [both of which are antibiotics] may have a dual therapeutic effect in Lyme disease -- in addition to their antimicrobial action they can exert control over the inflammatory effects elicited by B. burgdorferi spirochetes [footnote omitted]. These antibiotics may promote central nervous system cell survival and attenuate multiple processes involved in mediating inflammation and cell death.

"Minocycline is more lipid [meaning fat] soluble than doxycycline, and is a potential alternative for treatment of Lyme neuroborreliosis [footnote omitted]. Because minocycline is so highly lipid soluble, 100 mg twice daily is comparable with 400-mg daily doses of doxycycline in terms of CNS concentrations.

"Although doxycycline and minocycline attain comparable serum levels [in the bloodstream], there are important differences in CSF and CNS concentrations. The high lipid solubility of minocycline may cause vestibular [ear] side effects, limiting the administration of minocycline to 100 mg twice daily rather than 200 mg twice daily. Because of this, doxycycline (400 mg daily) remains the preferred antibiotic for treatment of Lyme neuroborreliosis. For patients for whom treatment fails, minocycline may be a therapeutic option [footnote omitted].

"Minocycline may permit a shorter duration of treatment in Lyme neuroborreliosis than high dose oral doxycycline because of its excellent CNS penetration [footnote omitted]."
I don't recall anyone here on this page using minocycline; I would do more research on it before taking it.  fwiw.
Avatar universal
[NOTE:  the following response from me seems not to have been posted on the site ... but I had taken the precaution of copying what I wrote before posting it. If it comes up later on the screen, well ... you get to see it twice ... but if it doesn't come up twice, then it means that there is something squirrely about the 'leave a comment' and 'your answer' boxes on this site.  MEDHELP:  this new format is a MESS.

=== here is a pasted copy of what I tried to post above: ===

... and one more important aspect:  I just reread what I posted up above, and want to highlight the quotes pasted there:  the author of that text appears to be comparing *only* doxcycline and minocycline to each other, and *not* comparing them to other antibiotics.  
          This is important because comparing only two drugs that have similar reactions with Lyme bacteria may leave out other treatment possibilities that could be significantly better than either doxy and minocycline.  I am NOT medically trained, but after dealing with Lyme myself and continuing to read about it when I have time, it seems to me that there are more than a few competing views about Lyme treatment that are not yet a final answer.  
          (I am thinking of this particular situation like going to the high school prom:  if I consider only boys in my English class as possible dates, then all the boys in math, history and science classes are ignored, and those boys could be better dancers.  Ha!)  
          The final statement in the original post quoted above says that "doxycycline (400 mg daily) remains the preferred antibiotic for treatment of Lyme neuroborreliosis. For patients for whom treatment fails, minocycline may be a therapeutic option [footnote omitted]."  If you compare a universe of only two items (doxy and mino), then you may  be leaving out the prom king as a date.  :)
         Just a thought.
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