I don't post a ton but I have been lurking everyday for 3 years now. In three years of treatment, I have gained alot of ground at some points only to lose it again or plateau.
Here is what I have been on:
Tetracycline Ceftin/Biaxin Mepron/Zithromax Mepron/Ketek Biaxin/Plaquenil Penicillin Rocephin with Tinidazole Rocephin with Biaxin Levaquin Fluconazole with Penicillin (Schardt (sp?) protocol) 12 months straight of Bicillin Factive Tetracycline/Biaxin Tinidazole Ketek/Mepron Rifampin/Minocycline
This list covers three years of treatment and brings me up to now. Each drug or combo was used from 1 month to 3 months at a time with varying success. At my last LLMD visit I got the feeling that he has run out of suggestions for me. He wrote me scripts to try pulsing Minocycline and Fluconazole two weeks on, two weeks off but suggested that I stop everything for awhile and "see what happens."
Generally, when I stop abx, I relapse 3-4 weeks later. My CD-57 hovers consistently between 30-40 (measured every month).
I was part of the Columbia SPECT study and received bloodwork (Elisa and WB) from 4 major labs - Quest, Stonybrook, Igenex, MDL. All were positive or CDC positive. My SPECT scan showed severe hypoprofusion.
So stopped everything on 12/1/06. A week ago I started getting worse. My knees and ankles are on fire, I am having trouble turning my neck, my vision is declining (I have had two bouts of optic neuritis), I am becoming more depressed and anxious about the state of my health.
I am fortunate enough to tolerate all abx very well. Eventually, I stopped have flares and just seemed to plateau.
My "golden" drugs have been Ketek, Rocephin and Tinidazole. The combination of Rocephin and tini brought me back to almost normal - my eyes were perfect.
I apologize for the rambling. I am lost about what to do next. My LLMD and PCP will take cues from me and do just about anything that I need/want.
Any thoughts?
Posted by dguy (Member # 8979) on :
The research says lyme bacteria is killed by abx only during its reproduction phase, and an individual Bb may not go into repro for 18 months.
Thus, if you do not take abx for at least 18 months, you will never kill all the Bb. This is likely why so many people relapse if they do treatments for less than 18 months.
You might look into the MP, which uses low dose abx for at least 18 months.
Posted by quic (Member # 5262) on :
I would try a rife machine. It seemed to give me lasting results where the abx were very up and down. Also, it seems to be able to get at bacteria that no abx (orals anyway) ever did for me. The rife machine especially did well for my neuro symptoms.
Posted by Bluetick (Member # 8467) on :
Thanks for the suggestions. Rife is a total mystery to me - maybe it is worth looking in to.
I have been on abx for 3 years straight and seemed to have hit a major plateau - I wasn't having flares and I wasn't getting worse.
Since stopping 1 month ago, I am definitely getting sick again.
Posted by AZURE WISH (Member # 804) on :
this is just my opinion as a lyme patient-
have you been tested for coinfections?
do your symptoms seem to indicate coinfections?
sometimes when people have problems making progress a coinfection(s) is present.
Did you completely plateau or did progress just start to go very very slow?
Posted by 5dana8 (Member # 7935) on :
Hi blue tick,
I would also suggest to look into co-infections. On the hope to heal conference tapes Dr. B talks about if you relaspe quickly after abx is stopped to suggest a co-infection, because Bb replicates so slowly.
I did three years of traditional treatment & really improved alot when I was treated for babs but now I can't stomach the meds any more & have been doing rife now for 7 months.
It seems to be holding my progress at present. If you do a search here there is a lot of information in past posts on co-infections & also about rife if you are intested.
Hope you can feel better soon Blessings, Dana
Posted by Jill E. (Member # 9121) on :
Even though the meds that seemed to help you the most are primarily Lyme meds and your CD57 is still low, optic neuritis can be caused by Bartonella or Lyme.
If you google "optic neuritis Lyme Bartonella" you will see lots of articles about Bartonella causing it.
The ankles on fire made me also think about Bartonella. I am getting worse, very possibly due to Bartonella getting worse.
I've had burning neuropathy throughout my whole body that has only somewhat improved on Lyme meds. I had to stop Bartonella meds early (Levaquin) but am starting Rifampin tomorrow. But I've been having all kinds of burning and electric shocks, more and more, in the feet and legs. So I was thinking about Bartonella in terms of what you are describing.
Since you've been some of the meds or combo for a fairly short amount of time, maybe you need to stay on something, let's say for Bartonella, longer.
Have you done a Bart test lately?
Just throwing out another vote for coinfections as possibly the reason for the plateaus or worsening.
Best of luck, let us know what you and your doctor decide.
Jill
Posted by kelmo (Member # 8797) on :
My LLMD believes Bartonella is the cause of chronic lyme. It's very difficult to get under control.
My daughter has so much of it in her body she tested positive with LABQUEST!!!! HAR.
She's been on zith one year, added rifampin last june. She pulses them because it was just too hard on her. Sumpins better than nuttin.
He doesn't want to change her to any more medications as long as her liver is staying healthy.
So, it wouldn't hurt to get tested for Bartonella
Kelly
Posted by seibertneurolyme (Member # 6416) on :
If you are up for another IV antibiotic and think Lyme is still the major problem then I would suggest giving IV Primaxin a try. Might not need to do 3 doses a day -- hubby could only tolerate 1 or sometimes 2 doses but had major improvement with this med.
Would also suggest trying some of the Buhner herbs -- try them by themselves or with antibiotics. Most everyone herxes on Andrographis so start slow -- much slower than suggested in the Healing Lyme book.
Might also want to check into the possibility of adding an antiviral med or herb to the combo.
Are you taking any immune supplements?
What about treating hypercoagulation?
Just some suggestions.
Bea Seibert
[ 03. January 2007, 08:08 PM: Message edited by: seibertneurolyme ]
Posted by Bluetick (Member # 8467) on :
I'm sorry, I should have been more clear.
I have tested positive for bartonella, babesia and ehrlichia. Babesia was through Igenex and bart and ehrlichia through Igenex, MDL and Quest. I am a regular bug factory.
I did 7 months of mepron with zith (4 months) and ketek (3 months) early on in treatment. This past summer I also did 3 months of mepron and ketek not necessarily because of babesia but because my LLMD feels that mepron penetrates the BBB and the eye so well.
I also did 3+ rounds of primaquine (for babesia/malaria)
I have done 30 days of levequin at one point. I have also done 30 days of factive (gemifloxacin) at one point.
I have also done 3 months of rifampin and minocycline.
In my mind I have the co-infections pretty well covered. Can anyone see any holes in the treatments?
LLMD suspected a lingering bartonella infection but nothing seems to have touched it.
I am not taking any herbs at this point. Just Florinef to control Neurocardiogenic Syncope and an antiviral (Valtrex). I have tried Samento and artemesinin in the past but neither really did anything for me.
I do have a very elevated homocysteine level, positive for Anticardiolipin Antibodies and positive Cardio CRP. Hypercoagulation is definitely and issue - how does one go about treating that? Coumadin? Heperin?
Posted by micul (Member # 6314) on :
It looks like you have taken all the right drug combos, and you have made some improvement right?
I don't think that the problem is "What drug am I missing." I think that the problem is that you may have cut your Tx's of Bart and Babs too short. 30 days of Lev or Factive by themselves or in combo would not be enough for Bart. 4 months of 500 mg Zith + 600 mg Rif + 400 mg Mino did not get rid of my Bart. (just as an example) Your 3 months of Mino/Rif probably wasn't enough either.
Bart can be really really tough to get rid of. It can actually take over a year of the right Tx to destroy it (if it's even possible to completely get rid of it) once it gets dug in.
Same thing with Babs. It can take a year or more to get rid of. And then there is the problem of taking the meds incorrectly. This makes them less effective. The right doses are important also. Check out the links below to see how Primaquine needs to be adjusted to prevent relapse in Malaria, and who knows how much is needed for Babs (Esp WA-1)
Were you taking enough of the right kind of fat with the Mep, and was the fat being absorbed? MCT oil is recommended for better absorption.
Did you take Artemisinin with your other Babs meds, and did you take it properly? Did you know that Milk Thistle and antioxidants interfere with Mep and Art? There could be many reasons why you are not where you want to be right now. These are some things to consider. Unfortunately we don't have any meters inside of us that tell us when it is safe to stop Tx, or if the doses that we are taking are correct.
My advise would be to look into co infections, Rule out heavy metal toxicity and add in Hyperbaric Oxygen and Organic diets low in carbs...
There is only so much that a body will take of abx before you start doing damage to your vital organs.
I hope this helps
Blessings,
Julia
Posted by Bluetick (Member # 8467) on :
Thank you all for your help. I am not sure what we (LLMD and myself) will try next. He has had some success with pulsing mino and diflucan. I am willing to try anything to stop this downward slide.
Tabers, I responded to your PM. As far as 18 months being the magic number of treatment time - I don't think that there is any hard evidence supporting that. Most people that I know have been in this "game" far longer than I.
I am going to examine co-infection treatment although I am suspicious about how great Rocephin and Ketek make me feel. Maybe the relapsing is the co-inf. though.
Also, I do eat a very clean - organic, low carb diet and have for 10 years now.
I see a holistic MD that is going to pursue heavy metal testing and possibly refer me to an endocrinologist (I produce almost no cortisol - very bad I hear). Also, we are looking into low dose naltrexone for immune boosting and possibly Dr. S's Questran protocol. I am hoping to discuss treatments for hypercoagulation as well.
![[group hug]](graemlins/grouphug.gif)