seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I mentioned before I'm supposed to start Levaquin for suspected Bartonella. I've never had any test ever show positive or equivocal for it, but I have some symptoms. Who here doesn't?
I admit I'm scared to death of Levaquin with the black box warnings, tendon issues, and neuro problems.
I have tried Bactrim DS and had some throat tightness which my former LLMD thought may be allergic reaction and pulled me off ASAP. I took Rifampin in the past all hell broke loose. Severe anxiety, head problems, and more. I felt like my body was going crazy. I suspected possible PA-450 detox pathway issues and my LLMD pulled me off after 3-4 days.
So is this it? Is it risk taking Levaquin and my health since all options are exhausted? If this is causing my neuro issues, I have no choice but to address it. I've been ill 3.5 years and making little headway IMO.
This is such a tough decision. I don't tolerate A-Babs at all and had a throat closing / swallowing issue at low dose so I'm hesitant to drop $80 more on A-Bart.
What to do?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Try Bar-1.. It's much easier to tolerate..
Bar-1 cat's claw, jamaican sarsaparilla, pau d' arco, burdock, blessed thistle, mullein, and oregon grape.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Can you order without a doc? I just want to know if this co-infection is a real concern and then go from there before subjecting myself to serious drug risk. Maybe my reactions to Rifampin and Bactrim DS already tell the story. Tough call.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Dr. B. Of rhinebeck health was my first llmd that diagnosed me in 2002. Didn't realize supplements available online. Good to know.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Other antibiotic options for bart include:
(from "The Lyme Disease Solution" page 254) other fluoroquinolones (such as Cipro), and "gentamicin and possibly streptomycin" (p. 25 of Burrascano).
There was a recent thread on taking Cipro for bart. A friend of mine could not take levaquin due to tendon issues, but she can take Cipro with no problem. So, even though these drugs are all in the same family, don't assume that you will react to them all the same.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Yeah, it's a hard decision. I even tested positive for Bart and have been putting it off a little (my doctor probably even moreso). I can't take Bactrim either.
As for other options...
Perhaps try low dose Bactrim and have some Benadryl handy, and see if the throat issue occurs again? Or to be safe (and if the reaction occurred right after dosing) take it and sit in the doctor's office? Worst case, they stick you with an epipen.
Or as TF just mentioned, go the low dose cipro route. My doctor isn't so fond of cipro, saying it just takes longer to treat using it, so the tendon risk issues are basically the same. But if going for a herx reaction, it may be suitable.
Or... just forget about hitting it directly, and try Zithromax or Doxy longterm-ish and hope it kills enough of it that your body can finish the job.
Posts: 584 | From NY | Registered: Feb 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
TF, it sounds like the Bartonella drugs all are bombs. Gentamicin can permanently destroy your hearing. Cipro is also another fluoroquinolone with big risks and a high side effect profile. I'm not familiar with streptomycin.
It sounds like a tough decision needs to be made here for me. I guess one asks themselves can they tolerate living like this forever or do you roll the dice and pray for improvement? It would be a million times easier if I had any positive test, blood smear, etc. to reference.
When a cancer patient undergoes dangerous, risky chemo, at least their doc is definitely saying you have this (proof on tests) and you can put it in perspective. That's what so brutal about these illnesses. It drives me insane.
Thanks for the Bar-1 info Lulu. I wish I knew just how many who took fluoroquines actually paid the price in the big picture. Just listening here is a skewed perspective.
Bottom line: THIS SUCKS. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
here is my take. you have bartonella. evidenced by bad reactions to the bart meds
the same thing happens to me. My head pressure increases, my blood vessels in my temples become engorged...weird brain sensations, blah, blah.
rifampin was the worst, levaquin was easier..though not too much. and i was told that my mood was absolutely awful when on levaquin...i was nasty
just my 2 cents...if i were you i would start at mini doses as bea seibeert has described.
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
Ever since I read this article from 2008, I have extreme doubts about its effectiveness in treating bartonella. I mean, you can miss things, but once you FIND things, once you discover things like this, can they really be put back in the box?
quote:Conclusion: ... Because a high level of resistance to fluoroquinolones due to a second mutation may be obtained easily in vitro, we believe that fluoroquinolone compounds should be avoided for the treatment of any Bartonella-related diseases.
I.e., the bugs develop a resistance to quinolone antibiotics so quickly (in vitro), these people think they shouldn't be used in "any bartonella-related disease." Levaquin is a fluroquinolone.
(And please don't shoot the messenger? I'm just sharing information.)
Posts: 512 | From USA | Registered: Sep 2010
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Try the Levaquin. It was like flipping a switch from bad to good when I was on it(until the tendon issues). Tendon issues go away though as long as you cease the drug in time.
Who knows...maybe you'll tolerate it OK. There is also factive...cipro...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
posted
On an unrelated note, why not start with smaller doses? I'm on 150mg doses of Rifampin, compared to the 300mg twice daily most doctors prescribe. I still herx and get the killing done, but at a level that won't end me in the hospital again.
This is how it is with ALL of my antibiotics. Start small, how about that? I've ever read people on here who had to start at just 50mg of Rifampin twice a day. It can be done as long as you're not having an allergic reaction to the drug.
(And I've never tested positive for bartonella either, despite having 90% of the symptoms and patterns. It's ridiculously hard to pin down! I'm hoping the new IGeneX FISH test for bart might pick it up, since they actually LOOK at the blood.)
Doxycycline treats bartonella, as well as azithromycin. However, they're usually (esp. zithro) used in combination with another antibiotic that outright kills it, since they only slow the replication and that isn't enough to eradicate the infection. Regardless, four months of doxycycline helped me a lot in getting the infection levels down!
And houttuynia is an herb that works for bartonella. I ordered it from Kalyx and capsuled it myself. I was taking it while off of antibitoics (involuntarily so), and it definitely made me herx. I'm not sure if it's enough to eradicate it, but it was at least doing something!
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
| IP: Logged |
chiquita incognita
Unregistered
posted
My experience with bactrim, taking half the lowest dose every second or third day. YOu have to keep in mind that I am extra sensitive to medications, but still this says something about the drug and its noxious potential:
Heart pains/flutters all day long, so off balance I had to hang on to the walls to be sure i didn't tip over, couldn't stay awake more than 20 minutes, too dizzy to walk and when I tried I was panting and not just out of breath, etc... *Severe* babesia herx, or so it would seem at first glance.
But actually I think a lot of it is a side effect: The heart pains and squeezing of my heart has not gone away ever since taking the poisonous drug. And hey, does a herx last two months? Methinks not. But this one did. Uh. Herx. Yeah, right. Actually, one doc thinks I reached my toxicity threshhold...any more and I could have actually died!
That was almost three months ago. Still no reprieve from heart stuff. I have *never!!!* been a heart patient ever in my life before! Never!!
I have to take herbs and Co Q 10 to keep heart symptoms at bay. Never needed them in my life, prior to drug use.
I absolutely cannot recommend it to anyone at least if their body is even half as sensitive as mine!
I refused the prescription for rifampin because it carries the risk (per pharmacy handouts) of tumors. Non-cancerous, said my LLMD, but it's still bad enough. ANybody *not* suspicious of the orange tears and orange body fluids is not thinking, sorry. We need to think more, friends.
So....
My experience with the Bar 1 herbal product by Beyond Balance has been:
Less than six months....no more fingers curled up into palm of hands asleep/deadish. Facial stiffness still comes and goes but much improved. Other things much improved...Herx's were gentle, bearable and only one or two were moderate. None of them dramatic. The improvement has been permanent. I took a year off therapy, am starting up again, and still there is permanent improvement. Fingers curling up into palm of hand asleep is a thing of the past.
That darned bactrim set me back so badly though. Since taking it, other neurosymptoms came up that have been much more virulent and severe than they ever were prior to taking it. My god! And soles of feet much more painful than before using that darned *drug*.
I can't recommend it to anyone.
I also read a horror story of someone's rather dangerous-sounding herx from bactrim recently on this forum.
Be careful!
I am so mad at these darned pharmaceutical companies. Beware of wolves in sheep's clothing!!!
That's my very honest input. No details here exaggerated, faked or in any way unreal. In fact I am even withholding some details and understating one or two things. This is a fully honest report, fact based. I have no financial ties to any entities, am only a patient, have no special interests anywhere. I am just telling you the truth and my own experience.
Not everybody's experience will be the same.
But please know that bactrim and rifampin are both sulfa drugs. Powerful, caution! Yes there are other options and yes there is hope.
posted
Are you supposed to use the Bar-1 product while you're treating Lyme? I'm not sure how you would tell which herx is which? I'm anxious to try the Bar-1 just not sure what stage of tx it's recommended
*I'll ask my lyme dr too... just curious about everyone else
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You can use it anytime during Lyme treatment.. Just be sure to use it away from abx.. You will know if you are herxing shortly after taking the formula.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Interesting to read about your Bactrim experience CI. I'm on Bactrim DS twice a day along with Ceftin and feel nothing. No side effects....no herxing....nothing. The only thing I've noticed is that my symptoms seem to 'come and go' more frequently.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Im on factive. seems to be better than levaquin
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I will be trying Bar-1 to start as a gauge on whether or not Bartonella is a real player for me. This along with multi-drug therapy for Lyme.
I was curious if one can take Amoxicillin and Biaxin together???
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Yes amox and biaxin can be taken together. Biaxin is interchangeable with zithro when taking amox.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Incognita, the last round of rifampin I took I noticed that urine was not orange like it used to be. I thought maybe they had changed something in rifampin?
I've never see anything about tumors from rifampin. I'm going to do some research on that.
Now that I think about it....late '10 when I went back on rifampin and intended to do it 6 mths because 3 mths of it in early '10 worked well for my GI(short term) then it came roaring back. That round of rifampin hit me harder than before.
6 weeks into it and I was done. I too am so sensitive/toxic/??? to abx. I even muscle tested myself and my body kept swaying yes it wanted it? Time after time. But I can't handle feeling like toxic waste day after day.
Controlling bart is so difficult and so different for everyone like the lyme bacteria. That is why I like using rife to knock bart back.
Sure I have a healing crisis/herx but it doesn't go on and on nonstop. That's why I refuse to rife daily like some have said needs to be done for bart.
Nope, I got to have good days or better days and I'm attacking them at a pace my body can handle.
I don't believe for one minute that a herx is a good thing. Yes, it does say aha I got a ton of bacteria and they are dead or immobile.
I just know it's not good for me, my body, my health and well being to be there day in and day out.
I just read a post here where someone said they were taking 1500mg of flagyl a day. For me that would be deadly. Lyme bacteria would be dead and so would I.
Seek, don't give up. You'll find something to help with bart.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
I have been on Bactrim before for other issues such as UTI's and even Strep throat as a kid. No side effects. All fine. BUT when I tried it to hit the Bart two months ago, I was so sick, completely bed ridden. Stopped the Bactrim on 5th day and continued this nightmare Herx for three weeks. Planning to start again soon, only 1/2 pill every other day. But suspecting that won't be enough to do kill the bart??
Posts: 348 | From MA | Registered: Dec 2010
| IP: Logged |
The dye from rifampin seemed to be eliminated much quicker if hubby drank more water. He did have this med compounded once at a pharmacy without the dye to see if the dye was what caused him to herx so bad -- no noticeable difference in herxing with or without the dye.
Bea Seibert
Seek -- Don't give up -- keep trying and I am sure you can find a med or herb that you can take. The key is to start slow and add more meds and herbs as you ramp up the doses.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
chiquita incognita
Unregistered
posted
Hello friends As I qualified, I am highly sensitive to medications and not everybody's experience will match mine.
I think we all have different constitutional types, different needs and different responses.
For me and my very sensitive system, the herbs have worked incredibly well.
I am really happy with the progress on the Bar 1 for Bartonella, and wanted to pass that on, for anybody who may benefit and be interested.
No way, in absolutely no way, am I recommending that anybody stop their medication at all, let aone without their doctor's supervision.
posted
I tried Levaquin, for three weeks or so a couple years back. I was mean on Levaquin. Factive I have been on on and off for a couple years, and find it perhaps a little more mellow. I was taking Flagyl with the Levaquin, and have taken Tindimax with the Factive. As a whole, I have had no tendon issues, yet.
It took a little time to feel improvement. Factive/Tindimax is the one combination that made me feel better.
Seek, I had the same concerns as you and a lot of folk do. But I decided that I would rather take a chance to be better than just be worse.
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Bea, I'm a water drinker. If I go anywhere my bottle water goes with me. So in my case water didn't change the orange urine or not.
Something else changed. I going to look around and see if they changed the dye. Gov FDA has put some demands out there about certain dyes in food etc.
I wonder if rifampin maker and my last month I took it was new Rifampin?
Thanks, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
Take more then usual dose of magnesium and vitamin C,vitamin B complex, B6 at least 50mg a day everyday then levaquin or cipro will be your best drug that you ever treatid with .
Posts: 482 | From Nebraska | Registered: Feb 2010
| IP: Logged |
lymeboy
Unregistered
posted
Ditto Maradona the tendon issues are a lot rarer than it has been made to appear, but there are issues with that. Load up on Magnesium. I take Cipro and it has been a godsend. Many others have said the same. - Good luck
IP: Logged |
posted
About how much magnesium did those who loaded up on it take? I have a couple of bottles of mag-tab here, but am wondering if I should stock up on some extra, as I am pretty sure I'll have to go the quinolone route sooner or later.
And did anyone ever take Avelox? My doc likes, Levaquin, Avelox, and then Cipro... in that order. He says Avelox isn't quite as strong as Levaquin, but it's better than Cipro. Just wondering ahead of time in case Levaquin has some nasty side effects (outside of tendon issues).
Posts: 584 | From NY | Registered: Feb 2009
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Good luck with the Levaquin Seek. I want this to work for you
Lemon-Lyme, Levaquin was easier for me to tolerate than Avelox. Avelox was cheaper but caused stomach pain and nausea. It may not cause any problems for you so don't be afraid to try it.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
lymeboy
Unregistered
posted
I take 800 mg of Magnesium glycenate twice a day. It needs to be taken at least two hours apart from the Cipro/Levaquin/Factive
IP: Logged |
posted
I took Levaquin for almost 5 months for Bartonella. I thought I was doing fine with it but feet and ankles constantly hurt. You know how they tell us that the bottom of your feet hurt with Bart? Well, I never remembered having it BEFORE Levaquin, it was like being in a constant herx. Always in pain. All these antibiotics are terrible for your teeth too. I spoke to a LLMD yesterday and he said that Levaquin is one of the worst in causing systemic yeast issues which I have. I can't get rid of this yeast either, it's been 4 months. I am more sick now then I was when I started treatment. Just make sure you follow diet and good proboitics. It is the best treatment for Bart but how long do you take it for? I don't know, does anyone know?
-------------------- 30 Supplements Awaiting new protocol Diagnosed 2nd time 9/08/2011 with positive western blot No co infection Posts: 74 | From Pine Island, NY | Registered: Sep 2010
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
What is Bar-1? Is that a Byron White herb? I wonder if it helps with Myco?
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Your herx from Rifampin is indicative of a gram-negative microbe affecting your body.
I would take Rifampin, in very small doses (100mg or less) and build up the the full therapeutic dose.
Add in Biaxin & Plaquenil once stable on Rifampin, and I guarantee you in 3 months you will be better than you are now.
CP-450 being utilized while on Rifampin is problematic, but you have to go through the fire.
Start at EXTREMELY low doses, put 1/5 of the 300mg capsule's powder in a veggie cap, AND TAKE IT SLOW.
I have followed you on here for awhile, and from all my time here and dealing w/ myself, you have something very reminiscent of BLO, bartonella, whatever you want to call it.
Once over the hump on Rifampin, you will feel like a million bucks.
As always, address detox pathways the whole time, and adequate nutrition.
Best.
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Hi Derek I am not sure if you were addressing your comments to me or to the person starting this thread, or to someone else?
If to me, then let me say that I was taking *bactrim* (not rifampin) using only half the lowest dose, every second or third day and no more. Two weeks of that and it brought me nearly to death's door. No exaggerating.
I am more sensitive to medications than most people so I won't say that everybody is going to have the same experience. In fact I think we are all different. We all have to work with our own constitutional types and honor them.
Medication is not for me.
Thank you for the kindly instructions anyway.
As for cheering up, to be honest I think a person has every right to be mad, under the circumstances. I've also done a fair amount of research and know of some side effects that are lethal with certain drugs (I am not talking about abx). And that too makes me mad. The FDA has no business passing such "medications" and the companies have zero conscience in making them, testing them on Nigerian children born to illiterate parents and killing those children in the process, according to some physician's articles I have read (yes, that's right). So am I mad? You bet. I appreciate the supportive intention anyway though and in principle, I agree with you. Positivity is important to getting well. Well said.
Pam, look for the word "Tumorigenic" on the pharmacy's leaflet which they hand out with the medication. That is where I found out (and refused the drug). My LLMD said these are not cancerous tumors, but regardless, I am not willing to take the risk.
I am glad to find out that they are removing the dye from the med. I will bet that dye had a lot to do with it. I will never know if it is/was the sole cause, but one less variable is always wise and important.
I don't know how many/how few people develop this so-called "side effect" by the way. You might ask your doctor about it.
The decision to start levaquin is a personal one which is different in every person. I do not personally know you or your case so my advice is just based on my experiences and personal viewpoint.
I personally have horrible bartonella from when I was 8 and contracted lyme and then in 2008 from a cat bite. I have also never tested positive. For me, I know it is responsible for most my neuro symptoms. I also am very, very sensitive to medications, so my case is different than most in that regards.
If you took rifampin and had a severe cytokine reaction then you have intracellular bugs! If really doesnt matter if its mycoplasma or bartonella because the treatment is the same. Levaquin can be scary, however so can many other medications that you read about.
I would take it tommorow if my doctor let me. I had horrible side effects from levaquin, but since I am not functional and had such a benift from the drug I would take it again.
I have been on IV levaquin 3 times (I cannot take oral levaquin due to severe herx). I developed tendonitis, mood swings, and nightmares from it. I also however, upon stopping the medication, experienced drastic improvements in seizures, my pain level (joint and nerve mostly), ability to focus, memory loss, numbness and tingling, sleep, my light and sound sensitivity, and about ten other symptoms.
Tendonitis is horrible, and the last time I had it for 4 months, but to me the improvement in other aspects of my life was worth it. I am always in pain, so it is unfortunatly not something new to me and I am lucky I do not have permanent damage.
The other drugs you can take include rifampin, riphabutin, gentamycin, and factive. You already know that you cant take rifampin because of severe herxes but you might be able to take riphabutin. Riphabutin is similar to rifampin but is better tolerated by some.
My brother took this without any problems but it made my body unable to regulate temperatures and I ended up in the hospital with a 106 fever 3 times. Gentamycin is an IV drug that you take 3 times a day. I do not know if you have a PICC or port so this may not apply to you.
It can cause permanent hearing loss and balance problems so is not used often. My doctor rarely prescribes it because of this but thought that it was a greater risk for me not to take it. He said flat out "you cant do anything, hearing lamage is worth the risk for you to have your life back."
I did have to stop this during the first dose because of severe vertigo that lasted for 2 months. My doctor does not think this could have caused it so soon but I strongly believe it which is what matters.
Factive is a fluoroquinolone like levaquin, but your risk of tendon damage is greatly reduced. You can reduce your risk further by taking antioxidants like high doses of ALA, vitamin C, and glutathine two weeks before starting Factive.
Taking magnesium to help your muscle relax, which will also lessen the risk of tendon damage because it reduces extra tendon stress. My doctor thinks the muscle tightness can cause and prevent the healing of the tendons. I have never taken this but am starting it in a week so I will let you know.
If you do not want to take medications at all you could try the Byron White Formula. These drops can be very strong so start with one drop and work up SLOWLY. I take A-Bart but personally have not noticed a difference even though my famous LLMD swear by them.
I do not know if the comment Derek wrote was meant for you, but if it was I am sure he did not mean it badly. A positive outlook is very improtant and negativity can make you go in circles.
I also believe that feeling comfertable in your treatment is even more important. I would not take Rifampin, riphabutin, or gentamycin again under any circumstances but would love to start levaquin again. I hope this helps.
Take care and God bless,
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Comments were only meant to encourage, not cause unrest.
I speak from experience of being one who is "extremely" sensitive to meds also.
I have come to find that almost anyone can eventually improve on them by taking low enough doses and going extremely slow. If 1/5 of a pill every 3 days puts you on death's door, than start at once a week. In this manner, one can eventually get on an effective abx for their strain/s. It may take weeks to months to get to a full dose, but IMO this is how abx can be effective and should be approached by all who have severe herx reactions that do not clear within 2-3 days.
Best.
Derek
Ps- Linds, good to see you feeling some better. we have to catch up soon.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Hi Derek Thank you and I wanted to weigh in to say that I was sure you had excellent intentions when you wrote. I also agree with you, positivity is everything.
That said just for future reference (I couldn't reach you by PM your mailbox is full, so sorry to do this here where it may not be as appropriate or even what I would like to do) it can feel a bit like that old story "it's all in your head, knock it off" as we hear from our docs. It's just easy to say "be positive" when you were as truly ill, and dangerously so, and not just sick as I was. And still am recovering from. Perhaps I didn't describe it well and I also don't wish to splat my personal symptoms all over the web, I tend to be shy about that so to even voice it at all was a stretch for me...
I am quite aware that this was far from the intention and that the only intention was to support. Kuddos, and high fives. We remain best of friends and I appreciate the friendly spirit here. Again I agree with you that positivity is everything. Thank you for your good spirit.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Sometimes it's hard to understand one's meaning when they aren't in front of you seeing your facial expressions.
I think some of us are so passionate about our history and the rough road WE"VE ALL been down... that we let our passion over shadow our message.
The old timers know it's a long road and learn patience. Our new posters are looking for that magic pill and patience is not in their vocabulary yet.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Thanks... we will catch up soon, I'd love to hear an update.
Take care, Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
| IP: Logged |
chiquita incognita
Unregistered
posted
Here's something I want to weigh in with, for all forum members at large.
Maybe it's true that some cellularly-embedded co-infections step forward after using a certain abx. LEt's say that' s true. People here are very researched and I am impressed, and learning a lot from you all!
Still, there is one thing we must never forget. There is such a thing as tissue toxicity and damage from having too many toxins floating around all at once.
It was a doc, a very sharp one, not a layperson, a doc who is lyme literate, who said he thought what happened after I took bactrim was that I met my toxicity threshhold.
Never forget that we must go gently. Herxing carries some risks. ANd perhaps what we are working with is a combination of herx plus side effects and toxicity, all together. tha'ts not a pretty combination and I question whether or not it is, at times, even safe.
Maybe it's not good to bring too many infections to the surface all at once. The immune system and liver can only deal with so much all at once. It may be best to deal with one infection at a time.
That's where the herbs have been my life saver.
It's interesting too that I improved so much, took a full year off (didn't even realize how long it had been) and then the progress maintained! No backsliding! I think that's saying a lot. No more fingers curling up dead asleep into the palm of my hand, that's a thing of the past. Lots of improvement in other areas too.
Be careful, go gently. Its the story of the tortoise and the hare. The tortoise wins the race.
I agree with you. For a lot, if not most people with lyme, fighting toxicity is a major component for staying well. I am constantly detoxing and taking herbs to support my body.
I always go very slowly with antibiotics for this reason. I also cannot take oral antibiotics for this reason. Some people, like my brother process toxins better and do not need much support.
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
| IP: Logged |
chiquita incognita
Unregistered
posted
Thanks Lulu. It's good that you, and others here, are very careful about detox. So important, and bravo!
I am *also* suggesting that we be very, very careful about self-diagnosing as laypeople. We know a lot of things about our illness, but we don't know everything there is to know about the body itself.
We can make many diagnostic mistakes as laypeople
And therefore self-treat the wrong thing, urge others to do the same. It's all out of only very good intentions and after all, our experience is something very important to note. I think even docs can be cued in by patients and their experiences, compared to what their textbooks may tell them.
Still, we are not trained and we can and do make mistakes all the time. Sometimes, costly ones.
Just a caution.
I think we can safely share what our own experience is but we should never diagnose for someone else. We can share information but suggest they check into it further, with their doctor. That's the safe way to go.
I have said many times that everything I say say is from personal experience and is not medical advice. I would never tell somebody what to do I just tell them what works for me and what did not.
I also do not self diagnose. That being said I do have a medical background and know about the human body. I do not know everything, only God does. I'm sorry if you misunderstand anything I said. I am very much aware that there are many things I do not know about this disease.
You shouldn't judge people or jump to conclusions when you don't know them. This thread was meant to talk about bartonella treatment and I shared my personal experience on the subject, that's all I did.
If you wish to contact me further please send me a pm this is not the place to have this discussion. Please note that I also understand that many things that are written can be misunderstood and I'm sorry for that.
Take care and God bless.
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
| IP: Logged |
posted
I also do not self treat, I see a well known LLMD. You should not assume things about people when you not know them. I'm not trying to start an argument, I am baffled that you wrote what you did in the first place and want no part of it. Thinking positive is everything and that includes not judging others.
Sorry for anyone who reads this.
Take care and God bless,
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
| IP: Logged |
chiquita incognita
Unregistered
posted
Hi Lindsay I will pm you asap. My comment was meant for everybody across the board, and was not aimed at you. Again I will pm you, sorry for any misunderstanding and let's clear this up. Thankyou for your gracious spirit and all your input here. Best wishes, CI
IP: Logged |
I sent you a new PM. Thank you again for understanding the confusion and accepting my apology. Best wishes.
Take care and god bless,
Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I just wanted to tell everyone I appreciate all the good advice on this thread. Thanks for helping. There's a lot to digest. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I have to say...I'm on my second pulse of Factive and I'm noticing improvement. It is a floroquinolone like Levaquin, but doesn't cause as many tendon issues (although it still can.)
After my 5th day on this round...no more small muscle twitches!!
I'm going to push my LLMD to do more after this round. The Bart is on the run!!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
| 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!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic