nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am getting symptoms back. I have not had muscle twitches in months or the frequent need to urinate and that is back in just days. I have also had tingling in one of my legs which I have not had in maybe two years. I have increased burning in my shins. I have also had bouts of dizziness.
This scares me because I was feeling so much better.
I have been taking Bactrim DS and zithro, pulsing tindamax twice a week. I have some Rifampin left that I could add to this. There are no doctors here so it is up to me to tell the GP what to do.
Does it make sense that the bart is now resistant to the drugs and I need something else?
-------------------- 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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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
levaquin or cipro would be my reccomendation, with rifampin.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
Sorry to hear this, Nefferdun! You probably do need to add Rifampin or Cipro. Cipro really helped me, but like you, once I came off it, I relapsed.
Question for you, your muscle twitches, can you describe further? I have twitches, but it seems like mine are more jerks, or feel like an internal shock. My arm will some how jerk, and some times my legs at times. Just wondering.
Posts: 490 | From TX- Go Cowboys! | Registered: Aug 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Parasites and worms can be and usually are a co-infection of Lyme. If you haven't done any tx for this, I would suggest you do a search on here for parasites. Lots of important info. Don't ignore this.
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
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
My twitches are like jerks in the muscle. They don't hurt - just feels spastic. In the beginning I had jerks that involuntarily moved my arm but not in two years.
Can I just take ivermectrin for worms? I give it to the horses and I could just worm myself with about 1/10 of what they get. That would take care of most internal parasites if I have them.
I took Levaquin but got tendontis. It is a great drug for knocking out the bart. I read Dr. B said an IV of magnesium and vitamin C helps prevent this damage from happening. The problem is who could give me an IV - maybe a homeopathic doctor. There is one that gives IV's of hydrogen peroxide.
There are many times I feel well and I get my hopes up that I am well but it always comes back. I can quickly go from feeling good to feeling completely out of it and then it takes months and months to recover.
I got a blood test this morning and asked the nurse to order the Fry Labs kit for me so I can know exactly what we are treating. The nurse (a male) was annoyed that I did not want to do a cheaper test - he thought I was wasting my money. Better my money than my life.
I will add in Rifampin - see what happens. Thanks
-------------------- 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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Hoosiers51
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Member # 15759
posted
I am in a very similar situation.
Everytime I stop my Bactrim, symptoms come back. It seems Bactrim is the only thing that's taking care of whatever this infection is....I'm assuming it's Bart or something "bart like."
This time, when I stopped it, I got those spastic muscle twitches (they are under the skin....very tiny muscles that are spasming), and the dizzyness I got too. Pretty crazy we are both getting the same thing.
Also, my brain fog and derealization got worse off Bactrim.
So I started Bactrim back up, and the brain got better....seems the dizzyness did too. Though I just get the dizzyness now and then, so it's hard to tell.
I am frustrated because it's like....I can't be on Bactrim forever. So I think I'm going to ask my doctor about doing a higher dose of it, to "knock out" the infection? I am stumped as to what else would work. I don't want to just suppress it...I want it to go away.
Posts: 4590 | From Midwest | Registered: Jun 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I think you should ask about doing iV gentamicin, the really hard core stuff.
The orals just don't seem to knock it out.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
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Member # 11749
posted
I think you should ask about doing iV gentamicin or Tygecycline, the really hard core stuff.
The orals just don't seem to knock it out.
Posts: 3528 | From US | Registered: Apr 2007
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quote:Originally posted by nefferdun: I am getting symptoms back. I have some Rifampin left that I could add to this.
Does it make sense that the bart is now resistant to the drugs and I need something else?
It does not make sense to me that Bart is now resistant to the drug you took, Rifampin, because according to LLMDs, Rifampin is not the drug of choice in treating Bartonella, or Bartonella-like-organisms. Have you ever had Levaquin? Did you test positive for Bartonella? Levaquin is expensive if you don't have insurance. But according to Dr. B, much more effective than Rifampin. Rifampin has not helped me. I just got a prescription for Levaquin.
Posts: 20 | From Washington, DC | Registered: Jun 2003
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nefferdun
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posted
Hoosiers, You told me about Bactrim and it has made the big difference for me but lately I have been slipping, or so it seems. I was not sleeping well so I cut back to four days a week, my mistake. I hope this goes away again but more than likely I need something stronger. How is the factive doing? I am tempted. . . .
Longtime, the first thing I took was levaquin but it gave me tendonitis. Too bad because it really knocked the bart down.
I can't get anyone here to give me an IV. I can't find anyone here that knows how to treat lyme or even believes lyme exits here except for the GP who thinks I am the rare exception. I design my own treatment plan and he prescribes my meds.
-------------------- 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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troutscout
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Member # 3121
posted
I did zithromax and rif for over 18 motnhs...did a great job on my Bart
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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posted
I am in the same boat. Levaquin knocks it down really well but cant stay on it forever. I have been trying to perfect a combo and schedule of meds based on what I have been taking in the past. Zithromax does nothing for mine, Mino is a great partner for many of these bart treatments in my experience.
I was doing levaquin for 2 weeks with mino and rifampin. I tried stopping the levaquin and adding bactrim DS as I felt my air hunger and babs symptoms starting to come back strongly one twice daily and it seemed to work nicely for about 2 weeks. But a few days ago I started getting those muscle spasms and feeling generally sore and fatigued all day. So bad that I could no longer go to the gym or anything. Thats my Q to add levaquin again.
Bactrim defo hits the bart and babs but like clockwork within 2 weeks the bart starts to gain ground. Thats despite being on 900 mg of rifampin single dose with 2 mino and 2 bactrim DS plus 4 spoons mepron daily for the last 2 weeks. Air hunger gone now and I have woken up drenched in sweat every night since starting this babs combo.
I am hoping that knocking out the babs with primaquine and cloroquine next week will improve my ability to treat the bart longer and harder, otherwise I am going to try Gentamicin shots.
Frickin nightmare! Its a pity you got tendon issues with quinalones as I dont know where I would be without them. Whenever the **** hits the fan I know I can go to them to bring me back to a stable 50 %.
-------------------- 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 just want to add that It may be that the levaquin holds back the lyme in some way also. It might be why it takes a couple of weeks to relapse. Hard to tell. My LLMD has mentioned that to me.
-------------------- 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
I feel pretty lost about what to do next. There used to be some window I could try to get out of here but I feel they are all shut now.
The GP gave me a year's supply of abx. He is such an idiot he said I did not need a liver test for a year and sent me on the way with the feeling that he did not want to be bothered. I added the Rifampin to the drugs, starting this moring, but I only have enough for half a dose for 6 days. You can't stop that med so I will have to call him and hope he responds, if it works.
Does gentimicin cause tendon problems? I am going to pump up the magnesium and vitamin C which I haven't taken for months, in case I need to try another quinalone. It is just so scary as the damage can be permanent and boy, does that hurt! I was in pain for 8 months and had to sleep sitting up. How could I imagine going there again.
-------------------- 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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posted
Regarding vitamin C, I am on a pretty high dose of sodium ascorbate powder (vitamin C), which I mix in tomato juice and then sip through the day. My LLMD approves and highly recommends it. (I am also on doxy and Biaxin, which are helping.)
I believe this is the same type of vitamin C they use in the IV's. The advantage of the IV is you can get a much higher dose at one time.
I had to work up to see how much I can take in a day without getting diarrhea. I can only handle about 14g (4 teaspoons), but some people take much higher doses, if they can handle it.
It is fairly inexpensive. I ordered 3-lb. jars online, and they last me a long time. Maybe not a true substitute for IV, but easy, cheap, under your control and with some of the benefits.
Vitamin C has added benefits in boosting your immune system, and it is antibacterial, antifungal, antiviral, antiparasitical and helps against toxins. It is also a great laxative in case you should need one.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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nefferdun
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Member # 20157
posted
I sure don't need a laxative, have to run to the bathroom already sometimes! But I have two different types of vitamin C from a homeopathic doctor and I will start using them again along with the magnesium.
I am just so tired of this. I was taking up to 40 pills a day and now I am down to about 20. Maybe I should just start shoveling it all in again - just make a nuclear bomb of abx and herbs.
-------------------- 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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