Prognosis of Late Stage Lyme?

[bobad]

Hi,

I had a very pronounced EM spot in 1987, followed by severe neurological symptoms, waxing and waning arthritis, and in fact  most of the classic Lyme sympoms. My doctors have eliminated everything else. I have taken 4 Lyme tests, all negative, but 2 were probably too primitive to be accurate. Now I'm having serious heart rhythm problems, which I've read is the way Lyme terminates.

I have never seen a "Lyme doctor" per se, but have taken my tests through my family doc and hospitals. I have never been officially diagnosed with Lyme, It has only been named as a "possiblity". As it now stands, I am undiagnosed. However, since everything else has been eliminated and because Lyme is so elusive, I feel that it's the most likely cause of my longstanding illness.

I have 2 questions. Is it worthwhile to pursue a Lyme doctor and a more precise diagnosis and treatment?  Is treatment effective at all after the 2nd decade?

Many thanks,,,

Bob A.

[Jenne522]

Yes it is worth wile to foto lldr! I which i did sooner instead of waiting for my iq to drop have issues with my brain. I am at late stage Lyme but there is hope that in 1-2 yrs I will be cured! Don't wait any longer!!!! I made that mistake!

[Theshed2016]

Hi I'm new to this board but looking for answers. You mentioned you have brain issues. Can you expand on that. It started in March having floaters in front of my eyes then the head thing started. ( they ruled out MS) it feels like I've been spinning around and around but things aren't actually spinning. I have a horrible time concentrating. Loosing words. Started a low grade fever for 2 months straight then shot up to 103-104 for 2 weeks. Ended up in the hospital. Doctors are adamant that it's not Lyme because I live in the south so when I was in the hospital they didn't do any testing for lyme. Had a Lyme serology that was positive and tested positive for band 39 on western blot. Have no idea how to find a LLD. My doctor has no problem with telling me he thinks it's Lyme but has no idea how to actually treat other than the doxycycline. Been on it for 3 weeks and no improvement.
Thanks so much!!

[JackieCalifornia]

PS also look at w w w [dot] turnthecorner [dot] org for referral to an LLMD in your state.  Someone here posted that suggestion on another thread, and it's a good one.  That's the organization affiliated with a recent film about Lyme, 'Under Our Skin.'  The point of view is that held by ILADS, the 'we believe in Lyme' professional organization populated by LLMDs.

If you are interested, there is an excellent book out recently called (unfortunate name) "Cure Unknown" by Pamela Weintraub.  She's a science writer who could be a mystery writer, given her talents.  It's the whole sorry story of how Lyme diagnosis and treatment has come to be so politicized and polarized -- she and her family have lived through Lyme, and it gives a framework to understand and begin to deal with what we Lymies are up against.  Depressing and heartening at the same time.

I was thinking over a comment you made about heart effects of Lyme being 'the way Lyme terminates.'  It's true, so I read, that Lyme likes to burrow in to muscles and connective tissue and hide there, and the heart is a place they like to go, but that doesn't necessarily mean it's the end, it just means to get thee to an LLMD.

[patsy10]

What you said about an accurate diagnosis.......I feel the same way.  I  just want to know what it is.  Unfortunately, many of us will never know for sure.  I do know that I respond well to antibiotics so if it's not lyme then it's some other form of bacterial infection I believe.

[PlateletGal]

Way to go, margy ! Those are most of the supplements that I'm taking and they help me a great deal.

In addition to the supplements you listed below (except the 5HTP), I also take Biotin, Selenium, NT Factor and L-Tyrosine.

[gkko]

Just an FYI:
The Dr. in Florida that is developing a new way to test for LD (actually his is a Phd Researcher) will test your blood, but you will not receive any benefit ie: no test results or diagnosis.  It is only for a study he is doing so no results will be given to the patients.

[margypops]

I am getting great help from the supplements I am taking.. the worst symptom at presant is the hand /feet tingling some numbness at night, no Arrythmia , I am taking Liquid, Magnesium/zinc/Calcium it comes in a large bottle the liquid is easy to absorb I get it from Sprouts my health food store am also taking 5HTP for mood, I take it for a few weeks then stop for a while it also helps me get some sleep, I take B Complex Fish Oil , Vit C. I eat very healthily and have found the Complementary Med Forum invaluable with information about Supplements.I am going to see if I can get some anti biotics as I know that it will help me get a remission going.

[bobad]

Thanks for the tip on Alex. That's only 55 miles from me.

Unfortunately, many Lyme sufferers seem to have joined with a culture of people with "mystery illnesses" such as CFS, FMS, toxoplasmosis, mycoplasmosis, etc.  In my years of pursuing a diagnosis and cure, I have run across all sorts. Some of them seem to just want a Lyme diagnosis, so they test and test until they get a "positive". I don't want a positive, I want an accurate diagnosis. Some people trust in quack docs pushing quack remedies just for profit. Others trust in kooky alternative supplements that delay them from getting real medicine or can be dangerous. I'm not berating the people, just saying how desperate they are. It's tempting to go there myself!

Thanks again Jackie,,,

[JackieCalifornia]

I just looked at lymenet [dot] org and they list two support groups both meeting in Alexandria, Louisiana.  Someone there could perhaps refer you to an LLMD.  One of the groups looks like it's run by someone focussing on alternative medicine, which I fine, but for an initial assessment I personally would want to know about the antibiotic approach as well.  If you google "louisiana lyme" you will get a bunch of hits, and if you work through those you may find some other contacts.  

LLMDs are not all created equal, because there is so much not known for certain about how to best treat Lyme -- each of us here on this site is getting different treatment protocols, partly because of various coinfections that we don't all share, and partly because of a difference in philosophy about how best to treat with which meds in which order and how much for how long.  If you don't get a good feeling about one dr, consider moving on to the next.  Some of us here became unwillingly adept at seeing several kinds of MDs simultaneously to push ahead on all fronts and arrive at a diagnosis and treatment protocol that seemed to best suit us.  If you have difficulty locating an LLMD, post back here and maybe someone can fetch up some more ideas.

Best of luck.  Stick with Churchill.

[bobad]

Jackie, thanks for the pep talk. (I'm a huge Churchill fan!)

Sounds like it's worth it to pursue treatment even after 20 years. Taking IV antibiotics  for long periods is preferable to getting a 4th pace maker, so I suppose I need to get busy finding a doc.  Maybe some day there will be a magic bullet that will destroy borrelia in a reasonable time.

Just an aside, I ran across a list of 46 lyme symptoms, and I checked off 37 that I have. (2 were female specific) One would think that's enough for a clinical diagnosis of Lyme, yet I will have to travel to find a LLMD.

Thanks again,,,

Bob A.

[JackieCalifornia]

Sorry to hear about your situation.  My personal rule of thumb is:  "Never give in.  Never give in.  ...  Never yield to the apparently overwhelming might of the enemy."  Now, Churchill meant the Germans in WWII, but it applies as well to Lyme.  

I have a friend who has had Lyme for over 20 years, and she gets treated and then relapses because her doctors have terminated treatment because they think it's 'long enough.'  Well, Lyme doesn't play by that rule book.  The point is:  it's never too late to keep trying, and she does.

I too was having heart irregularities after infection with Lyme, and I have read that Lyme bacteria use magnesium for their reproduction process, and it is magnesium that controls heart rate and other cellular activity in the body.  You might ask your dr about supplementing with magnesium and what level would be appropriate given your other medical issues.  If s/he won't answer you, then I (being stubborn) would say:  'Well, I'm going to do it anyway, so it would be safer if you would tell me what dosage and what kind of magnesium.'

Antibiotics also deplete magnesium, so you may be getting a double whammy.

Blood tests never test for magnesium levels, because most magnesium is stored inside the body's cells, not in the blood stream, so the level shows up as 'normal' until the blood runs so low in magnesium that the stores in the cells run out too.  Therefore blood tests will not show up as low or high, so why test for it?  Doctors don't pay much attention to this, but it can't hurt to bug them about it.  I'm no doctor, these are just my uneducated views.

I'm sure this situation is very difficult, given all you have been through, but stick with Churchill and 'Never give in'.

[cindy903]

That is just so amazing! I'm glad it improved for you. Definitely sounds like an infection -- and there's a new test out by a microbiologist in Florida.

http://jacksonville.com/lifestyles/health_and_fitness/2009-05-19/story/unf_professor_works_to_unlock_lyme_diseases_mysteries

He may be willing to test you which would at least get a diagnosis ruled in/out.

[bobad]

Dava54,

Thanks for the reply. I thought I knew a lot about Lyme, but I never knew there were often co infections. I'm wondering how long HGE could infect, it seems to be a short term infection. Good luck with your antibiotic therapy. Hope it works for you!

[i]I was bitten ..no rash, 20 years ago I had a test ,negative..I believe that I have had remissions a few times, I have been in ER with bad arrhythmias ...I think that the Antibiotics one gets for other thing s have helped keep it at bay.[/i]

Margy, That sounds real familiar. Sorry to hear about another 20 year sufferer, and I wish you the best of luck.

I had bad heart arrhythmias last year, and went in hospital for a pace maker. The pace maker got infected, so I receive massive infusions of 3 different antibiotics. Didn't help the infection, so they had to remove the pacemaker.  HOWEVER! The arrhythmias got better, and stayed better for nearly a year!  It just hit me a few days ago that all the antibiotics may have sent the Lyme into remission, or at least in the heart's electrical system. The heart arrhythmias also returned a few days ago, and I'm now desperate to get rid of them.

I guess I'll start a search for a LLMD in my area, which is Louisiana.

[margypops]

I was bitten ..no rash, 20 years ago I had a test ,negative..I believe that I have had remissions a few times, I have been in ER with bad arrythmias ...I think that the Anti biotics one gets for other thing s have helped keep it at bay. I am now looking for a Doctor to give me anti biotics as I have had the symptoms raging since a Trauma last year I believe triggered it off again. Like the others I have read and researched I think anti biotics is the way to go.

[Dava54]

  I was bit 4 times by ticks between 1999 and 2001 and was tested for Lyme but because my tests were negative and I never had the rash I was never treated. Since 2002 I have developed many symptoms and things have gotten worse. I have been sent to more Drs. than I like to think about looking for an answer. I kept saying "Lyme" when all else was ruled out, but due to my negative Lyme tests I was told "You don't have Lyme" time and time again.

   Finally last month I found a Dr. that went further and tested me for co-infections and I tested positive for HGE (ehrlichiosis or anaplasmosis) which showed as an old infection. He also believes I also have Lyme even though the tests have always been negative because he says the tests are not that reliable. He says that the HGE can also cause the same symptoms as Lyme.

   I have now just started antibiotic treatment 9 days ago and I am hoping this disease hasn't gone to long and I will see improvement soon. I am worried that I may never have my former life back. Please make sure you are tested for all the co-infections and not just Lyme.        Dava

[patsy10]

My bullseye rash was in 1992.  I recovered almost fully for about 7 years.  It all hit again after surgery.  My tests have all been negative too.  It's a lot harder to treat when it is late-stage but it is possible to recover or go into remission.  I respond very well to antibiotics.  I thik it is worthwhile to see a lyme doctor.