I know that we all are searching for the cure, the treatment that works, that magic bullet! Well�I seem to be at a crossroads.
I have been symptomatic for 16 months, and counting�but only 6 months before I got diagnosed. I have been to 2 different LLMDs, �been on numerous supplements and antibiotics�both oral and IV��ranging from mepron, bactrim, cipro, zithromax, rocephin, ceftin, biaxin, amoxicillin, rifampin, flagyl, plaquenil and welchol�which hit all three infections�lyme, babesia and bartonella�for 10 months straight now! I have had mostly neuro symptoms from the get-go�never any of the �typical� lyme stuff of fatigue and joint pain. But, my initial presentation was severe and life-threatening�coding in the ER, serious heart arrhythmias that warranted a cardiologist to want to give me an immediate pacemaker, seizures, muscle twitches, central sleep apnea. It has since progressed to major cognitive involvement, brain fog/constant drugged/drunk feeling, brain shocks/zaps when trying to fall asleep, heart palpitations, tongue numbness/decreased sensitivity (kind of like you burned it on hot coffee, but didn�t), etc.
I am now on cipro/bactrim & really loading up on the anti-inflammation supplements�coconut oil & fish oil. My LLMD seems stumped that I am no better! He said that if I don�t see at least a 10% improvement by my next visit from the anti-inflammation stuff, that I will need to go back on the IV for 3 months! Well, needless to say, it has been almost two weeks and there has been no improvement�actually more of a backsliding, unfortunately.
I am starting to wonder�perhaps I have something else! Although with 7 bands positive for lyme from IGenex, I guess that lyme is pretty definitive.
You all know the routine�spending gobs of money on a science experiment�and I am the lab rat!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
My doctor just added plaquenil to minocycline for me. I have lots of neuro issues -foggy brain-anxiety. A lot of people seem to have taken plaquenil with Biaxin, I hope others join in and you get better soon. And I take lubrokinase to break up the biofilm....
posted
This is my personal opinion based on hubby's experiences.
I have never been a big proponent in blasting tickborne infections with mega doses of multiple antibiotics. However, based on your description of your symptoms and especially the cardiac involvement -- I think you have been undertreated.
Either lyme or bart would be the more likely infections to affect the heart. From the list of meds you have tried -- I feel like the bart has not been adequately treated if that is the main issue. Cipro is one of the weakest of the fluroquinolones and I don't see rifampin listed. Hubby may have actually beaten that infection with the combo of factive and rifampin.
Also don't see any cyst busters listed -- although I am not big on those either. Hubby has had really bad reactions but that is probably because those were needed.
As to babs -- mepron and zith just is not enough in my opinion. And I do not believe that bactrim is bacteriocidal -- maybe bacteriostatic but not even sure of that.
Even with lyme -- you have not tried any of the newer more powerful IV's.
Sorry you are not seeing more progress but there are still many things that can be tried. You are no where near out of options yet. But it may take a 3rd doc to get you there. I think that is one of the hardest things -- finding the doc who will treat at the right level of dosing based on the patients presentation rather than just following some formula that works for the majority of patients.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You were with an inexperienced lyme doctor until 4 months ago. Your new lyme doctor is much, much better. He will get aggressive now that he sees how your body is not responding. You will experience improvement when you go back on the IV.
Your new doctor has a very good success rate. Your previous doctor did not.
It sounds like you need the IV. So, be happy that in 2 weeks you will be put back on it.
You are with an excellent doctor and can expect to get excellent results. I don't think you have to look for any other disease but lyme to explain your problems.
The doctor's expertise has so much to do with how the patient progresses. Give it a little more time.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks, Bea! Your strength and experience never cease to amaze me! I did forget to add rifampin and flagyl to my list of meds...I took both of those too! I just edited my original post. No surprise that I forgot to mention them...my brain is REALLY poor now!
TF...I hope that you are right! I've been meaning to ask you a few questions, too. I will PM you if you don't mind...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by triathletelymie: ...serious heart arrhythmias...seizures, muscle twitches...heart palpitations
You have alot going on here, but it looks like some of it may be due to low magnesium.
Lyme Disease causes low magnesium, as the bacteria live in our cells and use it up.
Which kind are you taking?
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Your symptoms sound so much like mine, particularly the neurological stuff. I've taken most of what you have, minus the IV.
My thoughts: you've only been treating 10 months, which really isn't that long. If you haven't already, you might think about trying biofilm-breaking enzymes 1 hour prior to antibiotics (Rechts-regulat, in particular, gave me a huge herx!) and KPU supplements. I think those two things really made the antibiotics work better and helped me to turn the corner.
Good luck!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Tri-
I actually suggest that you try to get another physician's opinion. I'm very concerned about the fact that your initial presentation included an incident where you coded in the ER due to heart issues.
If you have not seen any improvement/changes on abx, that would be another sign to me that you may want to consult another physician before restarting abx therapy....
Have you fully explored the neurology route to determine if your arrhythmia may be due to vagus nerve issues......
Anecdotally, I've read that some people's vagus nerve issues caused them to go to the ER with heart issues....some say it was triggerd by a gastrointestinal issue (spicy food seemed to set it off)(your burning tongue made me think of this)......Do you have IBS? GERD?
I guess I would encourage you to consult a neurologist or cardiologist.....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Tri,
I think we got bitten by the same tick. I also started my journey in the ER 3 times with severe chest pain among other things.
Really my one remaining symptom is that I am brain dead.
It will be 2 years of tx in June. I currently am on IV Rifampin because I am considering Ehrlichia and RMSF which I tested highly positive for. The IV Rifampin makes me more spacey than ever. I'm hoping that means it's working.
If figure if most of my other symptoms have gone away this one is like to fade at some point.
fingers crossed.
Posts: 2232 | From USA | Registered: Aug 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Have you been tested for Vitamin B12 deficiency?
B-Complex, esp. B12, is required for nerves to repair themselves. It is impossible for them to heal without it.
If you take a B-complex or multivitamin supplement without extra B12, then you aren't getting enough B12...
You may need shots if oral/sublingual B12 doesn't do the trick. It can take several months before you notice any changes from B12 supplementation.
I hope your doctor is able to help you more...I feel somewhat similar to you in that I haven't seen much progress in the 2 years I've been on abx., but then I cannot tolerate anything at the recommended dose...I herx too hard.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Tri-
You may also want to try to contact Brooke Landau who has been a spokesperson for lyme disease. Her original symptoms started as severe heart issues. The last I read she was working as a reporter in San Diego. Perhaps someone on this board knows how to put you in touch with her....
Posts: 1155 | From Southeast | Registered: Oct 2005
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-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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Bugg - I have seen three different neurologists (only one lyme-aware, another from one of my ER visits and one at Hopkins), They ran tests - EEG, MRI, etc. Showed white matter hyperintensities - pre-diagnosis, they thought that I had had a stroke, had a brain tumor, etc., although I had no symptoms of those.
I also have seen four different cardiologists and had numerous tests there as well - stress and bubble echos, Holter monitors, event monitors, and numerous EKGs. All checked out okay.
My heart arrhythmias and seizures seem to have abated even prior to starting lyme treatment. But...I have been off of the IV for almost three months now and have been on cipro and bactrim for about a month and a lot of my old symptoms seem to be creeping back in (dental pain, right hand colder than left, etc.) as well as current ones (heart palps, muscle twitches, brain fog, brain shocks/zaps when trying to fall asleep at night, etc.) getting much worse! I seem to have graduated initially from strictly heart issues to mostly neuro ones, however, quite frankly, I believe that it was ALL neuro...my brain was sending incorrect signals to my heart. There was no heart issue, only a brain function issue, I think.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yup to what Bea and TF said. And lots of others.
The vagus nerve is often affected by Lyme, just as the other cranial nerves are, so if that is a cause, that is surely from Lyme.
Yes, you need aggressive tx with IV! And you surely need to stay on it for a long time. Along with treating the other TBI's, of course.
Yes, Factive or Levaquin, or Rifampin can help the neuro stuff enormously. But just watch out for tendon problems, etc. with the quinolones.
This may be unusual, but when I was on FActive for only 2 5 day courses with 5 days off in between, my neuro symptoms (which were HORRIBLE!) went away miraculously! And mostly stayed away! But I did get bad tendon problems from it.
Posts: 3771 | From around | Registered: Mar 2008
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
At what point during your treatment did you
Detox?
Treat Yeast?
Treat Parasites?
Address mineral deficiencies? - Magnesium in particular (which can cause all if your symptoms). Did you do any IV or IM Magnesium?
These areas matter just as much (and IMHO moreso) than taking abx.
Equally important is the length and timing of treatment. Just because you've had the full gamut of abx, doesn't mean you took them long enough, or even in the right order depending on what coinfection and strain you may have.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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I have been doing detox throughout...welchol, lemon water, etc.
I was diagnosed with oral thrush by my original LLMD at my first appointment 10 months ago...about 5 minutes before he gave me the advanced lyme diagnosis! 'Treated with diflucan and nystatin and haven't had too many yeast issues since.
Never treated parasites though!
Been taking oral Mg to GI tolerance for a year...when I was in the "Mystery Diagnosis" stage and my duck PCP ran some bloodwork, it was low and he prescribed it then.
Very frustrated that I am not getting any better! This cognitive stuff is just the absolute worst! 'Very difficult to bear day in and day out for a year straight now!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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