Hello, I like the ideas that I've seen lately with people telling what they're doing. Here's my new one. I seem to be having trouble with an immediate response to meds, followed by steady improvement, then decline. Especially as regards bartonella/BLO, I feel like we can't kick it. My LLMD is very aggressive and thinks that maybe metals are hiding the bugs, so we are going to check for that. Can people weigh in?
Dx/began tx: Jan 07
new protocol for Jul 08: Mino 300 mg (been on this since last fall) Levaquin 500 mg (been on this 12 weeks already, made huge gains and now am losing ground w/symptoms returning. wth?) Bicillin 1.2 M 2x/week Plaquenil 200 2x/day (new) HH capsules 1 3x/day (new) cumanda 30 drops 2x/day (new) resveratrol 12 tablets/day (new)
Posted by seibertneurolyme (Member # 6416) on :
In my opinion, you probably need to stop the Levaquin and add in Rifampin and Zithromax -- not sure if you can take those 2 with the other meds you are on.
Hubby had the same problem you did -- tremendous improvement with Levaquin then after 4 or 5 months symptoms were returning.
Whatever you do -- remember to add one new thing at a time.
Also, would suggest starting with just 1 HH and maybe 1 or 2 Resveratrol the first day or more like the first 4 or 5 days anyway. Both can cause reactions.
What are the specific symptoms you attribute to Bart?
Bea Seibert
Posted by viva (Member # 8183) on :
CD57,
Just want to add my vote for metals testing.
You and my husband have same LLMD, I think. My husband turned out to be through the roof on mercury, and will begin a chelator pretty soon. I think this may be a key that we've missed until now.
Also, has LLMD tested you for candida? Husband's results were highly positive, despite no apparent symptoms. We've made radical changes in our diet, and LLMD prescribed caprylic acid. Husband's had a distinct, herx-like die-off reaction to the caprylic acid for a week; yesterday, he had his first good day (all day) in months. Just another thought.
Also to echo Bea, Rifampin can be a very good bart drug. Husband developed a tendon problem on Levaquin, but Rifampin has been doing something (he currently takes it with Omnicef and Mino; had to d/c Bactrim due to sulfur sensitivity, but Rifampin plus Bactrim was a great combo).
Best to you, and keep us posted. Viva
Posted by sixgoofykids (Member # 11141) on :
What about babesia? Maybe symptoms are returning because you've exposed another infection.
Or, you're not covering the cell wall deficient form of borrelia right now. If you added the Zith like Bea said to do, you would be covering that form. The mino and bicillin both go after spirochetes.
You're not covering the cyst form either. You could take something as simple as grapefruit seed extract for that. If you added zith, if you took Plaquenil, it would make the zith work better as well as go after cysts.
Metals is a good idea to check.
What are the symptoms you are having?
Posted by CD57 (Member # 11749) on :
Thank you all. I did do 9 months of Rifampin+doxy+mino+Bicillin and after a huge herx, did amazingly well. Then when LLMD added Buhner herbs, something was stirred up and what I *think* are bart symptoms came roaring back. That's when we switched to Levaquin. Interestingly what happened this time to make the symptoms come back was a 3 week course of Flagyl....it was great, and then when I stopped the bart symptoms came roaring back.
Here are what I think are the bart symptoms, would love folks' opinions: anxiety out of nowhere, to the point of feeling suicidal (this is completely debilitating), foot pain, confusion/cognitive problems, swollen glands in neck, slightly sore throat. Don't these scream bart? We haven't treated babesia yet because LLMD said bart was my biggest issue, he wanted to nail that first. We thought it would be easy!
The metals connection could be interesting, viva, how is your hubby going to chelate? I'm going to do a test and see what happens. I'm just feeling really terrified that I'm a non-responder and can't make any lasting gains. Anyway, something is holding me back from making lasting gains.
Thoughts?
Posted by Ticktoxic (Member # 6876) on :
If you have Babesia, or even if it is suspected, it should be treated first IMO. Not addressing it will lead to failure of other coinfection Tx's.
Posted by viva (Member # 8183) on :
CD57,
Re: the chelation, LLMD has recommended Zeolite HB, along with stepping up detox. He says it is a "gentle" chelator. I know others here have said it is not so gentle, and that Zeolite HB should be preceded by the regular Zeolite. Husband has not started yet, since we are waiting for the candida die-off to settle down (which it seems to be doing).
I'm actually very scared about the chelation, though at the same time I think that if husband can get through it, it will be really helpful. He had an AWFUL reaction to transdermal glutathione, which LLMD said might be because it was pulliing out too much too soon (it might also be sulfur sensitivity--we're checking that out as well).
Have you used glutathione?
I am hoping he will be able to go back to it in the future, since he had instant relief from one nagging spot of neuropathic pain before the bad reaction came on.
Viva
Posted by Angelica (Member # 15601) on :
CD57 those symptoms sound like bart to me especially the anxiety symptom.
Sorry you are going through this and I hope you get your answers and get well soon.
Posted by Rianna (Member # 11038) on :
I think your symptoms are still Bart, when speaking to my LLMD (same as yours) we discussed how bart will keep cyling and popping out of the bone marrow and red blood cells, so you have to cycle off and back on a bart med - he said you often have to do a few rounds of bart treatment before its finally gone.
You are in the very best hands with your LLMD so keep plugging away and as he will get you better.
Rianna
Posted by CD57 (Member # 11749) on :
Thank you folks.
My problem is that we've been hitting bart CONTINUOUSLY for a year and every time we think it's gone it comes back. I can't live with this anxiety, I really can't. Is there some possibility that I've developed a superbug BLO which can't be gotten rid of? I am terrified.
Posted by Hoosiers51 (Member # 15759) on :
I would second whoever said to check again for babesia. Maybe that is what is holding you back, and the bloodwork isn't detecting the babesia strain you have.
I am not a doc, but to me babesia would be a more logical explanation of not seeing results with treatment, as opposed to heavy metals , or even crazy super-duper BLO's.
Maybe I am just biased though because I was treated for years THEN found out I had babesia the whole time. (but had never taken the Igenex test previously)
Deciding to treat something that you have no proof you have is a big decision......but you might want to seriously consider it. Give it 4 months on Mepron and Zith and see what happens.
If you have been trying to treat this stuff for a long time, it might be worth the risk.
Posted by HamDune (Member # 14139) on :
CD57, hang in there, my friend. Many of us (I know I am) are in the same boat as you.
I have seen some of your past posts, but remind me, have you had the FRY test and that is how you got the Bart/BLO diagnosis?
Is there a specific test (and this question is for everyone) that is more responsive for Babesia -- such as the Igenex test Hoosiers mentioned?
Just curious, for the sake of us all trying to establish exactly what is going on with us.
Posted by Hoosiers51 (Member # 15759) on :
I also just wanted to say, keep in mind Igenex doesn't even test for the majority of the strains of babesia. I think you can get "west coast" or "east coast"....but if you are from Midwest, Northwest, Southeast (or have vacationed there)....might be tougher.
Just something to keep in mind as well. I wanted to elaborate.
Posted by CD57 (Member # 11749) on :
Thanks guys. Maybe it's time for the infamous 'multi-bug protocol' then. But does babesia cause crazy anxiety?
It's just that my babesia (which we know I have, because although I never tested positive, my 3 yr old did) has never really given me a problem, such as I've heard talked about on here.....headaches, sweats, that whole picture. So we decided to go after Lyme and bart/BLO full court-press.... Incidentally, I have no positive test for bart/BLO either. My LLMD did suggest Fry the other day, but then when I said "what are you going to do with this information given all the controversy around the results" he couldn't really answer the question. I haven't tested for anything since late 2006 and my LLMd doesn't really push the tests anyway. Tries to save his patients $ that way.
Posted by Hoosiers51 (Member # 15759) on :
Question: Are you sure you have it just because your 3 year old had it? Are you saying you gave it to her through pregnancy?
I was under the impression it can't be transmitted that way, but I could be wrong. I am hoping to get pregnant eventually, so now I am really scared.
I wouldn't necessarily consider not having those symptoms as a sign you don't have babesia. I never noticed night sweats until I went on Mepron the first time.
About the anxiety, I don't know. It is plausible it could be Lyme too? Hard to know with that sort of thing. Or, maybe it is still the BLO, but you need to treat your babesia first?
What is this standard protocol you spoke of?
Posted by Clarissa (Member # 4715) on :
C:
I can't describe in words how badly I feel for this wretched Bart journey you're on. I KNOW that suicidal, restless, anxious feeling and it's absolutely horrifying!!
You and your LLMD have been relentless going after this effin thing and yet, one year later, you are still suffering. I'm rendered speechless and it makes me sick to my stomach.
I'm thankful that you're in good hands. We KNOW your LLMD rocks so just trust him. He's fighting right there beside you.
I can be of no help with your question because I know nothing about heavy metals. I don't even want to know because my brain will glom onto it and create it in my body even if I don't have it...you know how that goes.
I just want you to know that I'm here for you, rooting for you, admiring you and PRAYING this will be resolved soon.
You're an inspiration to us all.
Lovingly,
Posted by CD57 (Member # 11749) on :
Thank you so much Clarissa! You always make me smile. yeah, it's been pretty tough.
Hoosiers--yes, I definitely passed it to my son in utero. Don't be too scared though. After we reeled in horror over the test results (Lyme and babesia positive), my LLMD (who does ROCK) tells me that kids get over this much quicker than adults. My son is going to be FINE. Me? Dunno.
The multi-bug protocol I was referring to is the "Dr H in New York" protocol, which is basically what a few posters on here have been on awhile, like Sixgoofykids. And i think now Derek is on a Dr H protocol? It essentially blasts ALL the bugs at one time. If tolerated, it seems to be quite effective. My LLMD doesn't really after go after Lyme, bart, and babs at the same time, but he'll do Lyme the whole time, and trade off on co-infections. He's pretty aggressive too, just maybe not quite as.
Posted by Rianna (Member # 11038) on :
I think he would go after all at once although as he knows your bart is so bad and that treating Babesia before Bart can make the bart worse he probably feels you really need to get to a level playing field before he starts Babs treatment.
There are still a lot of Bart treatment options for you so right now just keep plugging away as a year treating is not actually that long if you are highly infected - You will get there.
Rianna
Posted by djf2005 (Member # 11449) on :
yeah cd i am on an aggressive protocol w dr h.
he believes me biggest issue is blo also.
i too had HUGE gains on levaquin when i was with another dr, only to see them slip away and become worse than before...
i have all the symptoms you describe, all i can say is hang in there. its really scary, i know, i also wonder if i have created a superbug blo and how i will ever get better
my protocol is more aggressive than most, and ive had some good days/weeks in the past few months since first seeing dr h. right now i feel like death, but i also just started some things for yeast and added zith, so here begins the multi bug assault. in 3 weeks high dose rifampin will be added and then well go from there. if you see my protocol post it explains eveything else i am aon as well.
to be honest, at this point, i do not know if this multi bug assault will work. i do know this though, the last year of mono therapy has gotten me nowhere, and ive got no other choice but to trust dr h, his expereince in seeing 10 thousand patients, and trust his knowledge that he will get me well.
i am due to chelate and check for heavy metals in a week or two, as well as re check adrenals.
its all so tiring but we all have no choice but to keep plugging away.
i personally believe for me myco and blo are my biggest issues, which dr H thinks rifampin is most effective for. soooo.... we will see..
hang in there. sixgoofy did remarkably well on the blastemall protocol, i hope month 6 or 7 i will start to see life as a human again as well.
blessing and prayers to you.
cheers
derek
Posted by CD57 (Member # 11749) on :
I'm actually tempted to not treat the babesia at all if it's not really active, since it seems to make people's bart symptoms worse.
Has anyone noticed this, or would anyone agree?
Posted by CD57 (Member # 11749) on :
Hi Derek--thanks so much! I wish you the best and think you can beat this thing. Why does Dr H think myco is a problem for you? I never hear much about this one.
Did you just do monotherapy with one drug before seeing Dr H?
Posted by djf2005 (Member # 11449) on :
kinda, yes.
dr h and i spoke about babesia some.
i have been in tx now since march 07.
throughout this whole time, i have only treated babesia with mepron and zith for 3 months. i saw no improvement or herxing, so we are assuming babsesia is not a big player w me. could be the same w you.
one thing i could suggest, get some nutramedix enula which covers babesia to some degree, and take it with your other NM herbs.
this is what i am doing to cover babesia, along w plaquenil, even though we dont think its really a big part of my problems. now if 6 months down the road and all the bart and lyme meds have shown little improvment, i am sure we will be whipping out the mepron and making paintings with it all the live long day....
cheers
derek
Posted by djf2005 (Member # 11449) on :
sorry just was your response now.
yeah i better beat this thing. i pretty much have lost everything except my wife, which i adore, but i have plans for my life and hope to be able to fulfill some of them. i cant even work at all right now so i have a long way to go....
yes, before i saw dr h, i was on 80% monotherapy w/ dr c who practices w dr b in rhinebeck ny. (ironically they are 10 min away from dr hs! ha!)
anyway, yeah i did iv roc, then babesia, iv doxy, lots of hbot, biaxin and tindi (one combo which wasnt mono) then levaquin ....HUGE gains, then huge backslide and time for new dr!
myco....that little *****! myco is a huge problem for a lot of us. some people recognize that, some dont. its just as hard as bart to eradicate, luckily they are both treated with the same meds. i personally believe myco is a big problem and dr h kinda concurred. also, if you look at dr Bs treatment notes himself, all the patients he saw that did NOT get well had myco. sooo wooo hoo were ****ed! JK. we will beat this. but seriously, myco is no joke. better known as gulf war syndrome, people lose their minds and bodies, similar to other tbds, its not pretty.
good luck w everything. if u have any other questions, id be glad to help. im kinda housebound and my car just died so i have plenty of time on my hands....
blessing and health.
cheers
derek
Posted by Vermont_Lymie (Member # 9780) on :
CD57, sounds like a powerful protocol you are on.
I started bactrim over a month ago, and it has been a huge help with reducing the anxiety symptom. Just to share that, it has been a bit of a wonder treatment for me, at a fairly low dosage (one in the morning).
Posted by CD57 (Member # 11749) on :
I have not heard much about mycoplasmas.....don't the docs tell us that the various hideous combos we are on will wipe it out eventually? I tested positive for m. pneumonia, but my doc said that a lot of people are walking around with that, and that it doesn't have to be a big deal (or transmitted by ticks). Is there more to this? Do most people have these bugs too? What are the symptoms?
Posted by CD57 (Member # 11749) on :
I had a negative PCR for mycoplasma fermentans, that was the only PCR ordered. I had antibody tests for the other species, the common one.
Wow, Derek, maybe you and I should trade some PMs! Do you have this terrible anxiety too? did Dr H think it could at all be metals related? "My" Dr H--left coast--says that the metals could be protecting the bugs somehow so I'm supposed to get tested for them soon too. He said he was finding more that patients who don't get well have a metals problem.
Posted by Rianna (Member # 11038) on :
I have also had some very severe anxiety issues that I know are Bart related and not Metals as before being diagnosed with lyme I was tested for metal and underwent many months of IV Chelation therapy and was re tested and have no metal load to speak of now - Therefore although chronic heavy metls can effect your health I honestly do not think it has anything to do with your anxiety - I beleive that is TBI related, as does my LLMD with my psyche issues.
Not forgetting your anxiety peaked when you started treating bart, which happens to so many, so again I think that is your culprit
Rianna
Posted by lymie tony z (Member # 5130) on :
I personally don' believe in the heavy metals theory....
I do believe that one should NOT take any type of anti-inflamation medication when trying to beat these bugs...
zman
Posted by CD57 (Member # 11749) on :
thanks Rianna. Wow, did you do IV chelation therapy before all of this started?
I think its bart -- the anxiety -- it just feels very bart related. I just can't understand why it hasn't gone away after a year of a full frontal assault. Very discouraging. i hope I can make it. Sometimes the urge to self-destruct is very strong. But Dr H would be *so* disappointed in me and made me promise not to harm myself.
Posted by djf2005 (Member # 11449) on :
the anxiety is much better but some days its still very bad...
i agree, its bart related, not metals.
im due to chelate and test for them, i dont expect them to be an issue tho.
bart/myco is one of the hardest organisms to get rid of IMO.
in the new book cure unknown, rifampin is listed as one of the best drugs for these infections.
i am due to start in 3 weeks.
derek
Posted by Rianna (Member # 11038) on :
Darling C,
Dr H has many different antibiotics for Bart now, we were talking about it just last week, you may have to resort to IV with trental or Heparin but one thing he said and I know is that it CAN be treated, he said he often sees people fall out of remission 3 times before they are well but then they finally get it. You have a bag of other AB's to kill this sucker yet and Dr H will get it.
Even in his last presentation he says so many new AB's are showing promise at treating Bart
Moxifloxacin. May add Trimethoprim-Sulfamethoxazole DS bid. Linezolid and Tygacil show promise. May use Rifampin 600 mg qd with doxycycline or azithromycin. Both Can be IV Azithromycin and Doxycycline sometimes effective in combo. I personally had an overnight response to Teicoplanin IV so I am going to ask to go on that after my present combo of IV Cetriaxone & Rifampin
You are so strong but you MUST use everyone around you for support as I know you try too much to cope this alone but you must use your support network now through this terrible time, as it WILL GO.
So.... that promise you made to Dr H you must make to all of us here and no matter what time of day or night you call his mobile if it gets too much and you also PM me every day or hour if you need to, cause I am telling you you WILL get through this and Dr H will get that Bart killed and you already know you are with the best.
Rianna
Posted by Rianna (Member # 11038) on :
And anyway where would I be without you Rianna
Posted by Angelica (Member # 15601) on :
Could you possibly have a problem with yeast too which might be complicating things?
Hang in there you will get better. I know someone who had a really horrific case of bart and eventually they improved.
Posted by CD57 (Member # 11749) on :
You guys bring tears to my eyes...thank YOU SO MUCH for understanding. Where would I be without you?
![[Smile]](smile.gif)
![[kiss]](graemlins/kissing.gif)
Rianna