I have not posted here in a long time, I have just been putting my head down and trying to decode my illness.
I have been hitting these bugs for 4 years now and in the beginning I could hold it back with one or two antibiotics. Now now matter how many I take I relapse within 7 to 10 days of starting the combo.
I have a defo severe case of Bart as I have a massive flare within 3 days of coming off meds which threatens my vision.
I used to be able to get alot of mileage out of the treatments but now I do not know what is going on.
One good thing is I kicked the babs, I added back a cell wall drug Ceftin and suddenly it knocked it out. My LLMD said Babs and Lyme are like "delinquent teens" that are a bad influence and feed off each other. No amount of babes combos would knock it out but adding a cell wall drug sorted it straight away.
I am getting a bit desperate now with having to revise meds all the time. Something re-grows in a week or so which fuels extreme irritablity and irritation of my CNS and feels alot like Bart.
How can this be?? Has anyone else had this experience??
One thing that I have found recently is I still have a huge metals problem. I did a couple of rounds of chelation using Andy Cutlers ALA amd DMSA freq dosing and I had some of the worst herxes I have ever had. I have started chelating weekly now in order to try and lift the burden from my immune system so I have a fighting chance.
If the answer is not metals then I dont know what to do anymore.
Any input would be very helpful
Neil
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
I justed wanted to add that I have most of my activity in my frontal lobe and eyes and changing meds has a profound effect within an hour or two of adding them with a rather pleasant burning relief of my brain and CNS and eyes.
This seems like a much faster growing organism and not lyme.
Having said that I managed to get 3 or 4 weeks out of Ceftin,Mino, rifampin, Bactrim in December. I suggested the idea or rotating in Zithromax for the bactrim everytime I feel it gaining ground.
Right now I am on Ceftin, Levaquin,Bactrim and just added 200 mg of Flagyl just to see if it helps but this (Bart??) beast just shrugged it off.
I dropped the Bactrim this morning and added back in mino and 600mg of rifampin and I nailed the sucker good within an hour.
Levaquin used to be my superdrug but its not much good against bart anymore. Have I just managed to create super bart strains??
My LLMD wants me on B White. I think my only hope is A Bart or I am doomed. I have a 10 month old to raise this is crazy!!
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
My suggestion would be to switch the levaquin for factive. The combo of factive and rifampin is what finally knocked out hubby's bart.
The herbs that were most effective for him for bart were stephania and cryptolepis tinctures. He never tried the Byron White formulas. I have read where Buhner suggests doing both stephania and cryptolepis at the same time. Hubby only did them separately several months apart. But together might be a better option.
The stephania should help with vision issues. Tinctures from Woodland Essence -- capsules of stephania didn't seem to do much at all. I tried making a tea with that a couple of times and it was so bitter hubby vomited it up.
You do sound a lot like hubby when his bart was active. He could always tell very quickly when meds were or were not working. But we had a much harder time getting doc to make changes than you seem to be having.
I don't think oral zith will be of much benefit. Hubby actually herxed with a fever when he started IV zith -- and he had been on low dose oral for over a year.
A more expensive option would be to add IV rocephin to the factive and rifampin -- I think that that would be a very very powerful combo for bart.
Also you need to be on something like wobenzyme and/or lumbrokinase as well.
As to the heavy metals -- hubby had that problem before his tickborne illness. For him DMPS by IV was much more helpful than oral DMSA. But he did do both plus d-penicillamine and bear garlic and cilantro.
This is not medical advice -- just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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You have some good suggestions there. I have done many rounds of Factive with and without Rifampin. I did do 5 months of IV ricephin a while back which broke the back a bit.
I did use wobenzym along with buhners herbs in the very beginning of this nightmare, but these were simpler times when bart was held back by doxy alone for up to 3 months.
I founf the bunher herbs herlpful overall but veru difficult to sustain with all the pill making. I have become a dad since then so its an even bigger no no. I plan to ad serrapeptease for biofilms but of course funds are scarce.
I believe if I treat out the metals I will be in better shape. Yes thankfully my LLMD knows I am on the ball so he allows me change meds as I see the need.
I found cilantro gave me bad migraines and severe depression, pretty unbearable stuff. Cutlers theories for me have been spot on and my very high readings for lead in the urine test with doctors data shows a real need for DMSA over DMPS since DMPS does not chelate lead.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks for that input about ceftin helping with the babesia. I will keep it in mind.
The only thing I can suggest that might offer some relief is hyaluronic acid for the eyes. It really helps mine more than anything else. You can get it at your health food store. Get the vegetarian source - not chicken sternum or rooster comb.
HA is collagen- which the bugs eat.
What is your diet like? Stay away from simple carbs (sugar, white flour, potatoes, juice etc) , nitrates, preservatives, processed foods and red meat, so it is easier for your body to detox.
Niacinamide 1000mg twice a day for nerve damage for irritability, trouble thinking, motor function etc.
Alpha Lipoic Acid is a powerful antioxidant and detoxer - good for the liver. It also helps with neuropathy. Take 600mg ALA and 1000 mg Acetyl L Carnitine - usually once a day but in your case maybe twice.
Maybe suggest to your LLMD IV Glutathione as some of your symptoms might be related to the need to detox.
Having a baby is wonderful. I hope you get better soon.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Thanks neffer. I did IV gluth when I did the Iv Ricepin for 5 months 2 years ago. i also did nebulized for a few months. Cant say it did a huge amount other than give me some mental relief. I cant afford any of those things anymore.
I use ALA for mercury detox and I have started that 3 weeks ago doing mon - wed every 3 hours according to Andy Cutlers protocol which is the only one that seems to work and makes sense. Its just not to be messed with when you have metals issues.
I used to do 500 mg tablets now and then before I knew it was a powerful mercury chelator of the brain and it used to mess me up big time as I still had my fillings in.
I was soooo focused on diet in the first couple of years but now I realise it does not make a damned bit of difference. I avoid all the usual crap and keep a healthy enough diet but I am not fanatical about it like I used to be as it just took over my life and it dint help one bit from my extensive experience.
The only way diet is significant for me is preventing yeast issues and I have become an expert in that regard.
I take whey protei with lecithin and flaxseed and probiotic yogurt daily. I have thankfully managed to keep in excellent shape through all of this doing intense weight training every other day.
I am really not impressed by any supplements anymore. I supplement heavily with vits and minerals but stick to the basics as everything else is a waste of money. And after 50,000 dollars and still disabled at 30 years old...I do not have much hope left I am afraid. This thing still owns me despite throwing super human efforts at it.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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For lead chelation I know that IV calcium EDTA can be used. Hubby tried this once and only once -- very bad herx reaction. He had done the normal EDTA a couple of times (think that is magnesium EDTA but not sure) without any problems. The calcium EDTA takes only 20-30 minutes and regular EDTA takes at least 60 or maybe even 90 minutes -- has been several years so I forget exact timing.
Pretty sure that the d-penicillamine is also a lead chelator.
Hubby ended up doing factive 5 days per week for 6 months at the end of his bart treatment. We wanted to make sure it was gone. His previous bloodslide before that showed a 5 % infection rate and then the last one was clear. Of course that is not a 100% guarantee that it is gone. But so far so good.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea that is good news for him. Yes I would like to use EDTA in the future as it is an acceptable lead substitute according to Cutler. It is also said to be very effective against biofilms although there is little research done on biofilms it seems.
I used to take chelex from xymogen which has 100mg of ala, 100mg of dmsa and 100mg of EDTA. I took it randomly for about 6 months with not much response but when I started dosing it every 4 hours according to Cutler I had one of the worst herxes of my life.
Its a pity because Its really well priced for what you get. 120 caps of 100mg of DMSA on its own will set you back the same price as 120 chelex pills.
The dosages where just too high so at the moment I cannot tolerate more than 50 mg ofALA and 50 mg of DMSA. I will work it up to 100mg and when I feel I have the load down I will try chelex again, even though Cutler advises against the use of cilantro and Chlorella for chelation as he says they are too weak and cause redistribution more than anything else.
I always felt like crap on chlorella and even worse on cilantro. I am willing to take the chance later with the added bonus of EDTA for lead and biofilms.
I bought 50 factive pills a couple of years ago and pulsed it in the same way on and off. I finished up the last round there last summer. Its not an option for me anymore as its not available on the med card here and I am broke
I am interested to hear what bloodslide you are speaking of??
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
My doc has told me to use Ceftin, rifampin, Mino, Plaquinel, Malarone and swap zithromax for rifampin as I feel the Bart is regrowing. Its around the 10 day mark and my hands get really twitchy and I become very irritable and nasty. I also get a lot of creepy crawlies on my back as well as inflammation of the gut and eye issues.
I have to spike the doses of the meds rather than space them out. Minimum 600mg rifampin and 200 mg mino once per day. Whatever this is Mino really hits it hard and fast. Meds take effect within 2 hours, instant relief and then herx on day 3 to 5/6. What a nightmare. I will add A-Bart in a few weeks and it better do something or I am running out of ideas ;(
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
up -- anything new here?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Hey, I am constantly fine tuning my combos to match my needs. Right now I am doing Bicillin 2.4 twice a week, Mino 300mg one daily, Bactrim DS one twice daily, Mond-Thurs Levaquin 750mg, Fri-Sun Rifampin 900mg-1200mg once daily. I am also doing 500mg flagyl twice daily Mond to Wed. I am trialing Cipro this week so I will see if that works any better against this thing.
I decided to shelf Zithromax and maybe do 750mg fri-Sunday with the Rifampin and Mino once a month as I do have short herxes on it possibly from lyme.
Going to trial Factive again in future as it may fit in better with this new regimine.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
I don't knwo what's going on here btu there is SO MUCH WRONG with these combiantions and stop-and-go therapy! One should never, ever stop and resume Rifampin in this manner! Not only does it bring out all of the side effects and potential toxicity of the drug, but leads to the bacteria easily becoming resistant to it within just a few lapses in therapy! Also, you cannot do this with Levaquin for the same reason! And Zithromax is NOTORIOUS for causing resistance, even for less-serious infections!
In case your'e not aware of what resistance is, it's where you inadequately treat the bacteria with an antibiotic, and whatever survives goes on to mutate and reproduce so that all the future bacteria will now be resistant to that antibiotic and it WILL NOT WORK!
Please, please talk to an LLMD, and if you already have one talk to another one that will not lead you to do these very detrimental things! What a horror it would be if your infections became resistant to the only medications you have available to treat them!
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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NMN,Wondering if you tried A-BART like you had mentioned? Its strong medicine. Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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