just diagnosed

[Luc217]

Hi,
My name is Leslie and I was diagnosed with Lyme two days ago after having symptoms almost a year not even thinking about lyme as an option. I had been to a ton a doctors who found nothing wrong labs, x-rays all normal. Finally I saw a new internist at my clinic who just moved here to WI from VA and she ordered the test (IGG/IGM) and it came back positive. I have heard this test doesn't usually come back positive and she did send it on to Mayo for western blot for confirmation. She did start me a doxy 100 mg twice per day and I am so hoping this helps and I can actually start to feel like a functional person again. I almost got fired from my job because I was calling in a couple times per month (should have been more). My family thought I was crazy because I was at the doctor all the time and I started to feel crazy. I am so glad to have a diagnosis, but scared that treatment won't work or take forever to feel better. Any advice?

[JackieCalifornia]

Doxycycline (aka doxy) works only very early in a Lyme infection, and many of us (me included) have no idea when we were bitten:  never saw a tick, never had a rash, just got sick as a dog for months and months until finally diagnosed by a Lyme specialist.  Other antibiotics than doxy may work fine for you and not irritate your body.  fyi.

All good wishes to you -- !

[lyme_maybe]

I am also in WI and was recently diagnosed with Lyme and Babesia. I am seeing an excellent LLMD and would be happy to send you the information if you private message me.

I have had Lyme for 11 years and I also started on the Doxy. About 5 days later I got horribly sick and tried to muttle through the herx until I couldn't take it anymore and the Dr pulled me off of it. I am on herbal antibiotics now (Samento and Crypto-plus) until my next appt in Oct and we'll see what they do with me. I am also on like 15 other meds and supplements which have helped now in the last 5 weeks, but the first 3 were awful.

I bought a portable sauna on Amazon which has been my lifesaver and also cut out dairy, gluten, sugar, corn, soy, and eggs, all of which are inflammatories. Just that alone I know made a difference.

[JackieCalifornia]

You say, "My husband was recently diagnosed with Lyme through the IGnex test and also positive for for Babesia!"

I too was diagnosed with Lyme and babesia several years ago, and I also had the IGeneX tests, which came back positive.  I was then treated with particular antibiotics, NOT with herbs or homeopathics.  Your current doc is wise enough to use the IGeneX tests (which are more accurate than other tests), and I am wondering what the doc's diagnosis is for your husband, if you would be willing to share that here.

What many MDs do *not* understand about Lyme is that the slimy shields (called 'biofilms', where the Lyme bacteria hide in the body) keep the antibiotics from locating and killing the Lyme bacteria.  The next step then is that two types of medicine are needed:  one to break through the biofilms, and the other to kill the then-exposed Lyme bacteria.  If it were my husband, I would take him to a good Lyme MD for confirmation of diagnosis (to be sure to pick up any additional co-infections) and to formulate a treatment plan to follow (that is, which meds to take in what order).

I had my own documented cases of Lyme disease and babesiosis, and I was fully cured of both of them some five+ years ago, as was another member of my family.  We are both fine now, and I would take the same diagnostic and treatment approach as we did previously if we were to get Lyme etc. again.  

Your bio does not indicate what part of the country you are in, but I would be happy to send you some ideas on locating a Lyme doc near you.  Treatment for me and for my family member took almost a year, but worth EVERY minute of it. (There are good reasons it takes so long, and we can get into that later if you are interested in hearing it.)

MDs who do *not* specialize in Lyme disease often do not include Lyme in their differential diagnosis (to match up the patient's symptoms with known effects of various diseases like Lyme) and if these docs DO make a diagnosis of Lyme, they often do not know how to treat it effectively.  It is sadly typical of non-Lyme-docs that they believe in ALS but not in Lyme disease.  In a few years, the medical world will be sorted out, but don't wait -- I'm sorry to be pushy, but I've been through Lyme and done enough reading on it to know that if you were my neighbor, I would drive you both to the doc myself.    

There is a documentary film made a few years ago called 'Under Our Skin' that is well worth watching (I think it's available online now).  It puts the whole medical community/Lyme situation into perspective, and I recommend the film/video.  I know I must sound like a nutjob, but in real life, I'm about the most boring and serious person you could imagine.  There are some parts of the movie showing some Lyme patients when they were particularly ill, but NOT everyone gets it that bad -- I didn't, and if anyone is going to get bad symptoms, it's usually ME!

Back to diagnosis and treatment:  The split in the medical community about how to diagnose and treat Lyme (and its coinfections like babesia) sometimes cause even good docs to ignore the possibility of Lyme, thinking it's very rare and hard to get ... when actually it's a rapidly spreading and miserable infection.  That is how many of the docs were and are trained, because those who first 'discovered' Lyme disease are still practicing but often refuse to update their research.  It's human arrogance at its worst, sad to say, and we just have to take that into account in getting diagnosed and treated.

But back to today.  Please don't wait any longer.  You don't say what part of the country you are in, but if you want to send me a private message thru this MedHelp system, I can scout around to find some leads for Lyme specialists near you and send you that information in a private message through this website.  Or just send me a general message in the comments here, saying 'we live near Minneapolis MN' or whatever, and I'll send you back any leads I find.  We try NOT to put any Lyme doc names in the open here, because in some states, Lyme docs need to keep a low profile so grumpy old members of state/local medical boards don't try to make trouble for the Lyme docs for doing things 'differently'.  In some states like Calif. (where I am), docs are fairly free to treat patients as they like, but in other states, the medical boards can be very stuffy and cause big trouble.

It is highly unusual for so much of the medical community to mess up as badly as they have with Lyme, but there are still good Lyme docs to be found who DO understand.  Someday this will all be sorted out ... but probably not this week.  In the meantime, finding a solid Lyme doc is what I did for me and my family, and is what I would do again without any hesitation.
  
I am sorry to be so pushy, which normally I'm not ... but am concerned and want to help give you some options.  From there, it's up to you.
  
Take care -- !  Best wishes to you and your family.  Let us know how we can help.  JackieCalifornia

[lymiebird]

I’m just a nobody who spent several decades in a HELL called Lyme Disease.  Advice?  No, however, I do make suggestions.  Learn about both diseases; keep in mind the web can provide a lot of garbage along with good info.  Listen to your gut instincts and let them put you on the proper course for YOU.  Your belief in whatever treatment path you chose needs to be solid and sure, otherwise, regardless of the “medicine” the less faith you have in it, the less power it will have to heal you.  In my case, had I even known the term Lyme Disease, I would have had more power than I did.  

Many blessings on your path, Lymiebird

[Cindolou]

My husband was recently diagnosed with Lyme through the IGnex test and also positive for for Babesia! He has had the symptoms for two years and is getting worse.  He is now in a wheelchair. Since May, he has been doing the homoppathic route but his Doctors don't believe its Lyme and say it is ALS.
It's so hard because the symptoms are so similar. We are just not sure what to do anymore. Any advice!

[mojogal]

Thanks and I just saw auto correct did the wrong word it's lyme goes into cyst format.
Let us know if you have more questions.

[Luc217]

I'm so sorry for the delayed diagnosis.i hope you are doing better and please keep me updated on your progress

[Luc217]

Thank you so much for all of the info. I will start to look for LLMD in my area.

[mojogal]

I was recently on Doxy again after 3 years. The usual dosage that I hear from everyone is double your dosage 200 mg twice a day. You will definetley need a cyst buster as lyme goes into custody format to escape the meds.

Jackie gives an excellent intro to everything which I can't read at this time due to poor vision but based on past posts I am sure she told you to seek a lyme literate doctor (LLMD) who will treat you properly and hit those Co-infections if you have them.

Please take this seriously, I went 25 years misdiagnosed and I am paying dearly now. Still treating after 3.5 years.

Good luck!

[JackieCalifornia]

PS  I just realized I didn't mention co-infections.  That is a catch-all term for infections other than Lyme, but that are carried by the 'Lyme' ticks.

Based on your various symptoms, your doc may test you for one or more co-infections, and if you have any of them, then the doc will advise what order to treat them, since the meds against Lyme are often not effective against the co-infections.

I had Lyme and babesiosis at the same time, and I couldn't tell the difference between them, but my Lyme doc knew how to sort and parse my overlapping symptoms and run the right tests.  I was treated for babesia for several months, then when that was gone, I was treated with different meds for Lyme, also for several months.

Everyone has different symptoms and different infections, so if someone has symptoms you don't, not to worry:  it's just Mother Nature causing trouble.  Hang on!  (My treatment finished ~5 years ago, and I remain quite well today - knock wood.  Go for it!)

[JackieCalifornia]

Welcome -- we are glad to share our experiences and suggestions.  In many ways, getting properly diagnosed was more difficult for me than getting treated and getting well again, and it sounds like you are definitely headed in the right direction.  

You might ask your doc why the multiple tests are being run so that you have the doc's own explanation, but here is my understanding:  The original tests for Lyme disease (called Western blot and ELISA) function by looking in your blood for antibodies created by your immune system to fight the Lyme bacteria.  When W.blot/ELISA tests come back positive for Lyme disease, those result are generally agreed to be accurate:  positive means you have Lyme.  

That's good as far as it goes, BUT the difficulty with W.blot/ELISA tests is that the Lyme bacteria are quite good at *suppressing* your immune system, so getting negative W.blot/ELISA tests mean that either (1) you do *not* have Lyme OR (2) you *do* have Lyme but your immune system is being suppressed by the Lyme bacteria, so your blood tests do not signal that you DO have Lyme.  

Bottom line:  the W.blot/ELISA tests are reliable if the results are positive ("You have Lyme"), but if the W.blot/ELISA tests are NOT reliable if the results are negative ("You do not have Lyme.")

Many MDs still rely solely on W.blot and ELISA tests, but Lyme specialists who understand all this will test with a completely different kind of test:  Lyme PCR, short for polymerase chain reaction.  The PCR test does not rely on your possibly suppressed immune system, but instead looks for DNA (genetic material) of the Lyme bacteria present in your blood.  As a result, the PCR test is highly accurate, while the W.blot/ELISA tests may miss many true Lyme infections.

It may be that your doc is running both sets of tests, as my Lyme doc did, because more data is usually better to have.  My PCR test came back positive for Lyme, AND my W.blot and ELISA tests *also* were positive for Lyme.  I had double confirmation, but if I had had only a positive PCR test, I would still have been treated for Lyme.  Your doc is, to my understanding, taking the careful approach, to collect as much data possible.

Doxycycline (doxy) that you have been given is often the first step in treating Lyme, and it works well as long as the Lyme bacteria are still recently arrived and have not yet burrowed in to slimy areas in the body called 'biofilms'.  The human immune system cannot reach into the biofilms to kill the bacteria, so doxy alone may not be effective, but the doc may add another medication group called (in slang fashion) a 'cyst-buster' to assist doxy in penetrating the biofilms and killing the Lyme bacteria.

My own LLMD did not give me doxy at all, and instead treated me only with other medications that efficiently killed the hidden Lyme bacteria directly.  Each doc will have a preferred approach.
==================================
So that's the action of the medication front.  Now to handling your job situation.  I kept working while I was under treatment, but others need to take time off, such as under the Family-Medical Leave Act (FMLA) enacted some years ago by Congress.  Your Lyme doc should advise you about whether you need to take medical leave at least for a while.  Everyone is different in how Lyme etc. affects them, and it's important to listen to your body and to your doc.

Until your doc comes back with recommendations on how you pursue treatment (FMLA or keep working, full time or part time), just hang on -- it won't take long for this to gel.  Your doc will very likely recommend how much you can work and will document for your employer how much you are able to work.

You say, "I am so glad to have a diagnosis, but scared that treatment won't work or take forever to feel better. Any advice?"  One of the symptoms of Lyme is anxiety, so it's not just you feeling this way, and hey, I'd be anxious in any event with so much going on.  

(When you see you doc again, you might ask what might help you settle down ... I took magnesium supplements (such as magnesium malate, citrate, or others ending in '-ate) because the Lyme bacteria like to use up magnesium in your body, which messes with the whole hormonal and emotional aspects.  Ask your doc.  Some docs just say 'eat a balanced diet', but that's not very clear imo.  The supplements helped me a great deal during Lyme, and I still take magnesium now every day, several years post-Lyme.)

Being afraid is a normal reaction to illness, and also esp. to Lyme, particularly because of aspects like the low magnesium levels that can occur and affect emotions.  Hang on!  Keep us posted!!  Lyme is definitely worth beating.