Topic: What do you think my next move should be--txment history included
adamm
Unregistered
posted
I ask because I'm seeing my LLMD on the 8th.
The protocols I've been on: Doxy+Rifampin+Omnicef-6 weeks Ceftin+Biaxin-4 months Rifampin+Bactrim-2 months BIaxin+Cat's Claw-2 months Allso, Welchol-the whole time I've been on abx.
Additional info: Pretty much all I've done during txment is go downhill, and while all of these drugs are supposed to affect bart to some extent, I've really spent 3 months on protocols that specifically target it. I had my heavy metal levels tested before I got Lyme, and they were quite low.
My thoughts: Maybe try Mino+Rifampin (I think the only way I'd use a fluoroquinolone was if I knew I'd die without it.) ----------------------------------------
What do you think I should do next, though? Go after the bart some more? Tx babs? Go straight on IV Rocephin (all my major symptoms at this point are neurological)? Wash my hands of abx completely and try other modalities?
Any thoughts would be greatly appreciated
IP: Logged |
posted
I think it would be wise to treat babs and see what happens. You could start Mepron or malarone and then add in IV Rocephin (probably take a while to coordinate getting the line placed anyway).
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I would think about using some alternative tx such as herbs. Also is your LLMD aware that most Lyme pts are loaded with parasites and worms?
The LLMDS in Europe are starting to deworm their patients. Antibiotics are not always the answer.
Do a search on here for parasites and see what info comes up. The doctors don't always have the answers.
Sometimes we just have to take charge of our own health.
Hope this is informative,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
I don't see a cyst buster listed---flagyl. Might ask about heparin.
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
[QUOTE]Originally posted by glm1111: [QB] The LLMDS in Europe are starting to deworm their patients. Antibiotics are not always the answer. ________________________________________________ I would not listen to any in the UK as we all fly to the USA for treatment
posted
Adamm, My advice would be to go on levaquin. I know there is a lot of horror stories but it also is a life saver for others.
I have been on 500 mg of levaquin for over 4 months now and I weight train and run and play soccer with no problems whatsoever.
I would not be doing any of those things if it weren't for quinalones. It literally brought me back from the dead. There are safe ways of approaching it you know.
I am going to go back to a rifampin combo to try knock out the rest of it and then may go back on the levaquin again if need be.
I think this is an example of where this site can have a negative impact on your treatment. These drugs are all toxic in their own way. Your choice of course and do it with the guidance of your LLMD.
I would also look at adding a cyst buster too. Maybe Plaquinel before flagyl. Even Bicillin shots or if you can IV Ceft.
Hell... just copy mine. Packs a wollup though.
Hope you feel better soon.
-------------------- 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
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I didn't improve on antibiotics. But improved quickly treating for Babesia with Malarone. I would treat for Babesia and see what happens. You can likely get well without going on IVs.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
Everyone is different in how they respond. You are a bright and intellegent person Adamm. Follow your instincts. I wish you a productive appointment with your LLMD.
Posts: 261 | From Piedmont | Registered: May 2008
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
What are your current symptoms?
I second the de-worming comment .... it was a shocking treatment for me. I did the de-worming at the same time I was on Levaquin .... it was the greatest progress I had made up to that point.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
adamm
Unregistered
posted
By far, the biggest one is cognitive impairment--after that, spasticity and tremors.
IP: Logged |
posted
I agree you need to try a macrolide and mepron.
Although lyme treatment is certainly not a one size fits all proposition that is one combo that has truly been a turning point for a couple of my family members.
Another option is difulcan---used as a cyst buster in combo with a high dose of tetracycline, it has proven a potent weapon.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
ive given my thoughts in your previous thread which was asking for advice then..
you have not been on powerful enough combos/combos which cover most if not all forms nor are you covering all the bases.
again, i mentioned these things in the previous thread.
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Have any of the combos helped at all with tremors or made them worse? Do you have the tremors all the time or do they come and go?
Tremors, myoclonus and seizure-like epsidoes are some of hubby's worst symptoms.
I used to think that Babesia was causing at least part of these symptoms, but anymore I think it is mostly from bart or mycoplasma or the mystery bug or all 3.
The meds that helped hubby the most -- low dose quinine and clindamycin alternated with amoxycillin every 10 days. This helped with babs, but in hindsight I really think the clindamycin may have helped just as much by working on bart.
The other med that helped him the most was levaquin.
Unfortunately though neither of these protocols worked to eliminate the bart or mycoplasma or mystery bug. In the next week or so I will be trying to come up with a new protocol for hubby and it will definitely include lots of herbs -- I think the bugs develop less resistance to herbs than to antibiotics.
This is not medical advice, just my opinion based on hubby's experiences.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
lymeloco
Unregistered
posted
With or without treatment, you'll experience both. What do you think?
IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
adamm-you've only been treating a year? that is just the beginning for many. sorry. but even my ten yr old daughter tx 2 yrs and then one yr of detox
and everyone here is correct: you haven't had a cyst buster or babs tx.
i don't like it when docs give you a whole bundh of different tx too quicly-but that isn't happening-at least you are giving each tx a few months
but ask you llmd about babesia treatment and something for cysts (many llmds like to do babs first)
and - i know it sucks-but tx takes awhile. you have a long life ahead of you. it's worth a few years to knock it back and get it under control.
Good luck.
Posts: 43 | From NY | Registered: Oct 2008
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i just edited my post to repeat cyst form is important to target: flagyl or tini
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Ceftin wasn't helpful for me until I got to a much higher dosage than you are taking. Wondering why you are on only 1 g/day of ceftin? Adamm, PM me if you want to know my dosage.
A macrolide + babs tx has been very helpful too.
You know alot about TBD's at this time; my advice is to get the best llmd that you can, and stick with their advice. After increasing ceftin significantly if your llmd concurs, IMO.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bow]](graemlins/bow.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic