posted
I am really, really low from my appointment today. I have been on a bunch of antibiotics and had reactions to several of them (minocycline caused vertigo, biaxin caused hives, levaquin joint pain, etc, etc, etc). I was on Doxy but had EXTREME heartburn so switched to Zithromax, which caused all my symptoms to come back after three great weeks on Doxy. Back on Doxy, this time with Nexium, but I've continued to get worse. The dizziness is out of control, and I am napping 3+ hours a day. One daily activity wipes me out.
I don't understand why my LLMD won't go to IVs. I wanted to ask him today, but he was very abrupt. I'm supposed to stay off the doxy for 5 days to make sure the dizziness isn't from doxy (which I know it's not since it was the main symptom before I got treatment). His response was "I'm not sure what to do here."
Is it time to find another doc?
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
posted
Don't know whether this med is worth a try - I'm sensitive to abx and the only one I seem to handle is oral clindamycin, which alleviates my symptoms.
Probably you will need to see another doctor who knows what next approaches to try, unless yours is able to consult with another LLMD.
Posts: 13171 | From San Francisco | Registered: May 2006
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
My first thought was that all those side effects you mentioned (except maybe for the hives) are to be expected when on antibiotics for lyme.
Since symptoms can come back and we can experience new ones when we are on an antibiotic, it doesn't seem unusual to me that you would have vertigo, joint pain, excessive fatigue. Sometimes I think our sensitivities to antibiotics is really our body fighting off the bacteria, which causes us to go through the herxeimer reaction.
Not sure that's true in your case, but just a thought. I wish you the best! j
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posted
Slippery elm or marshmellow root is good to take for a raunchy tummy. Vitacost.com. You could try tetracycline or minocycline there are lots of others to try. I did 1 yr oral antibiotics and thought if I could get IV I'd get better faster. WRONG. I had a PICC line for a year did Doxy, rocephin,flagyl,vanc. there were others but can't remember them off the top of my head. Cost a lot of money and I would have been better off staying on orals.
Posts: 383 | From Ar | Registered: May 2007
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posted
My understanding is that herxes aren't supposed to be indefinite though and that you are supposed to get better at some point, right?
(I did try minocycline but it caused extreme vertigo, which is a side effect not a herx, and a tetracycline is a drug class.) I would be fine staying on the Doxy if I thought it was a herx, but I expected to start feeling better.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
For Doxy + belly issues, there is an enteric coated version (Doryx), which should be easier on the stomach. I expect it'll be insanely priced unless you have insurance, but if you have good insurance, it's something to consider.
And always, always take Doxy with food, even though label may say not to. I first tried to tough it out, taking on empty stomach to get better absorption, but that didn't work out so well -- it didn't even always stay down.
Posts: 584 | From NY | Registered: Feb 2009
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posted
I was on it for 7 weeks before and now I've been back on for 4 weeks.
The stomach issues aren't bad. I've got those under control. I just seem to be getting worse instead of improving. The dizziness, fatigue, back pain, headaches, etc are bad.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
posted
BHealthyNow, What does the dizziness feel like? When do you get it? eg standing, lying down, with head turning etc. Is there any to and fro feeling like being on a boat? If the latter then Babesia might be the cause.
Beachinit.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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posted
I had all the same problems you are having on Doxycycline. It made me dizzier and so tired or weak feeling I felt like passing out. I got a really upset burning stomach too.
I take Zantac twice a day, not at the same time as antibiotic, and the rest of the symptoms went away on there on after a while. I think you have to just stick with it and it should get better.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
You have only been on Doxy for 7 weeks at a time? I have been on it for 10 months, and that is after taking a year of numerous other antibiotics.
I don't think you can judge the effectiveness of an antibiotic in just 7 weeks. If you are lucky you might, but only the few get that lucky. More like 7 months.
I didn't notice feeling a bit better for about a year and a half into treatment and that was only very slight. Now its 2 years and I think maybe I am starting to turn the corner.
Treatment for most ppl with LD is not a quick fix. It is long term, meaning possibly years.
I agree with Aiden, sometimes if you stick with an antibiotic some of those effects will eventually go away. Not that I am condoning staying on antibiotics that cause serious side effects. You should always discuss with your doctor; but some effects are to be expected.
Remember you are putting man made chemicals into your body.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sounds like herx and side effects both but it is sometimes very hard to tell the difference.
Levaquin is known to increase pain. It did for me. My LLMD had me stay on it for quite awhile.
You can herx constantly. I did for several years after starting treatment. You may be fine killing borrelia for awhile but at some point (especially if you are not on a good detox program) your body may get overwhelmed with toxins and dead bug debri and you can end up in a constant herx. Sometimes, despite good detox support you can be in a constant herx. It happened to me. It depends on how well your body gets rid of the toxins and your bacterial load.
Are you having your liver enzymes checked regularly? What kind of detox support are you on? Are you on a good probiotic? Is your doctor an ILADS member? Are you keeping inflammation down?
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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I have lots of vertigo issues too. My doc recommends OTC meclazine (near motion sickness drugs). I haven't taken it yet.
I don't think you should take mino if you're prone to vertigo.
And I would switch Docs. That's what I did.
My new doc says there's no reason to take an abx via IV if it exists orally. The only 2 he does thr IV= tigecyline and ceftriaxone. But ya know, IV is no joke. It's a procedure, you can get sepsis, it's not to be taken lightly, and it's expensive. So try to find someone truly willing to exhaust all the possibilities.
best of luck
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
Could still be a herx from restarting Doxy. You haven't been on it a super long time yet.
Side effects seem less likely, since you stated you had dizziness previous to starting Doxy.
Co-infections would be something else to consider. Babeisa or unresolved Bartonella (which I think you treated already) may be getting riled up.
Posts: 584 | From NY | Registered: Feb 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Good point lemon - I often have co-infection flares.
sickpuppy wrote: My new doc says there's no reason to take an abx via IV if it exists orally.
In a nutshell, borrelia loves the central nervous system. Orals do not penetrate the CNS very well. Some people may require IV in order to get well.
In fact, there is no reliable, commercially available culture assay that can confirm the eradication of the organism. Using experimental techniques, however, B. burgdorferi has been detected in virtually every organ in the body, and the spirochete has a strong predilection for the central nervous system.
Oral antibiotic levels in the central nervous system are low, and this fact may necessitate the addition of drugs with good penetration across the blood-brain barrier [15], such as intravenous ceftriaxone or cefotaxime.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thanks for all of your opinions. I am also wondering if I don't have seasonal migraines. I used to get them, and they were resolved, but given that I'm having issues now, I think I'm going to go back to acupuncture and see if the headaches and some of the dizziness resolves.
I am not having my liver enzymes checked. I would doubt that it's a bartonella issue since I JUST stopped the Rifampin and had been on that for 6 months. I don't have a good detox program other than baths. I am looking at a detox spa near my mom in Southern CA. My current doc is an ILADS member, but it seems that maybe he gets frustrated easily when treatment doesn't go as planned.
I agree with TerryK about the bioavailability of orals to the CNS. I understand that IVs are serious. But for nervous system issues I think that they might be required for a subset of people. I have been getting treatment for 6 months, and while I understand it takes time to feel better, I don't expect that my symptoms get WORSE 6 months into treatment, especially when oral doxy didn't cause a herx before and made me feel SIGNIFICANTLY better within a couple weeks.
Lyme is frustrating, and I think that there is so much responsibility placed on the patient to sort through so much conflicting info to make decisions when they aren't medical professionals.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
well, I am not a doctor or in medical profession, but I can see where maybe if you react poorly to oral abx, that a doctor may not want to put you on IV. A reaction to an IV med can be severe.
You could also think about bicillin shots.
Also, I know this can be really hard to hear, but I think you should follow your doctors advice about stopping the doxy. sometimes, the llmds don't always explain everything they are thinking. I know I had some symptoms that came back, and that had gone away with ceftin. When I stopped ceftin, 5 weeks later they came back. I was convinced I needed ceftin again, but Doc thought symptom might be caused by another tick infection. And sure enough, she was right.
My LLMd has told me several times she wasn't sure what to do next. Typically, she calls one of the former ILADS president for some advice. I actually think its a good sign that she is humble enough to admit she doesn't always know. BUT, I feel ok about it, because I know she is contacting someone else.
Some of the LLMDs actually belong to their own medical blog, and write back and forth to each other for ideas, new findings etc...
Sometimes docs are abrupt because they are trained to get people well, and lyme patients are really difficult. It makes the doctors feel bad that they can't help, and this sometimes comes across as them being curt or abrupt.
But, I know how bad it iswhen you are on the receiving end of that, especially when you feel awful.
These diseases are so complex and everyone is different. I would say, if you feel like you doctor doesn't have any new ideas, and is opposed to all of yours, then yes, time to move on to antoher LLMD. Recognize though that it can take 1-4 years to get well, so you will need to stick it out with a LLMD for at least a few visits before you will know.
IT totally sucks, this disease, nothing is easy about it....
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
I am off the Doxy for the next five days and then going to call and see what his ideas are if the dizziness returns. Depending on where we go from here, I will make a decision about the doc. And I'm looking into some alt treatment for symptom management, so maybe that will help.
-------------------- Lyme, Bart, possible Babs Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron Been on nearly every antibiotic since 10/09
quote:Originally posted by BHealthyNow: [QB] My understanding is that herxes aren't supposed to be indefinite though and that you are supposed to get better at some point, right?
NOPE! Not in my case! I herxed like forever and ever.
Don't expect miracles with treatment. You would also herx while on IV, so what's the difference?
Just hang in there and try to be patient... HARD, I know. I've been there.
oh yeah.. I took Doryx... pricey version of doxy but VERY easy on the stomach.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Liver support can help prevent vertigo and other vestibular symptoms. GINGER CAPSULES, too.
3/4 of the way down page one, there are lots of LIVER LINKS:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by BHealthyNow: I would doubt that it's a bartonella issue since I JUST stopped the Rifampin and had been on that for 6 months.
Perhaps Bartonella wasn't completely cleared? Just guessing, but if you stop a med, and symptoms then return or get worse, it may be a signal that the previous infection is still hanging around.
Posts: 584 | From NY | Registered: Feb 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Ditto what lemon said. This has happened to me with both bart and babesia and fairly quickly after stopping meds. You may also have infections that haven't been identified yet.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by BHealthyNow: His response was "I'm not sure what to do here."
Is it time to find another doc?
Admitting that you don't know is a sign of strength. He's trying to be careful, so that he doesn't make you worse.
Sometimes some things improve with time, and I'm sure he knows this. I don't see why you would need to change doctors yet.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Personally, while I respect your doctor admitting he doesn't know what to do next, I don't see why you'd want to stay with a doctor that doesn't know what to do for you.
If it was me, I'd be searching for a doctor who DOES know what to do. I believe there are plenty of LLMD's and LLND's out there that would know what to do in this situation.
Again, it's nice that he's honest and humble enough to admit he's at a standstill, but don't you want to have a doctor who has confidence in knowing what his next plan of attack is going to be?
Thanks for giving everyone here an opportunity to express their opinions. This is my opinion and that's what I'd do if I was in your situation.
posted
My husband gets vertigo if he misses his meds. Just a thought: are you taking your meds in a timely manner?
And back when he was herxing, he got terribly dizzy and had extreme fatigue. He pretty much stayed in bed 24/7.
I, on the other hand, haven't seen a bit of change; not better. not worse. i'm getting frustrated.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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posted
also...as for the migraines. Lyme can affect all joints including the TMJ (jaw). TMJ dysfunction can cause horrific migraines. I had pain so bad I am sure I would have ended my life had I not found a doctor who was able to relieve it. My dentist fitted me with a Tanner appliance and oh what a difference it has made.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Try Tetracycline instead of the Doxy. Or try Dorxy (Slow Release form of Doxy, it does not cause the stomach problems of Doxy, however it's also 400-500 dollars per bottle compared to 20 dollars for Doxy). If insurance covers it, it's worth it. Try Tetracycline if price is the issue. It should give the same improvements as Doxy.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by BHealthyNow: My understanding is that herxes aren't supposed to be indefinite though and that you are supposed to get better at some point, right?
(I did try minocycline but it caused extreme vertigo, which is a side effect not a herx, and a tetracycline is a drug class.) I would be fine staying on the Doxy if I thought it was a herx, but I expected to start feeling better.
Tetracycline is also a specific drug itself. Minocycline Vertigo can be avoided in many cases if the person only increases by 25-50mg. The body usually will adjust over time to it. A lot of people here do that and do fine after initially having the same response you did -- which probably was caused by starting 100mg x 2 or something of that sort.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by BHealthyNow: Thanks for all of your opinions. I am also wondering if I don't have seasonal migraines. I used to get them, and they were resolved, but given that I'm having issues now, I think I'm going to go back to acupuncture and see if the headaches and some of the dizziness resolves.
I am not having my liver enzymes checked. I would doubt that it's a bartonella issue since I JUST stopped the Rifampin and had been on that for 6 months. I don't have a good detox program other than baths. I am looking at a detox spa near my mom in Southern CA. My current doc is an ILADS member, but it seems that maybe he gets frustrated easily when treatment doesn't go as planned.
I agree with TerryK about the bioavailability of orals to the CNS. I understand that IVs are serious. But for nervous system issues I think that they might be required for a subset of people. I have been getting treatment for 6 months, and while I understand it takes time to feel better, I don't expect that my symptoms get WORSE 6 months into treatment, especially when oral doxy didn't cause a herx before and made me feel SIGNIFICANTLY better within a couple weeks.
Lyme is frustrating, and I think that there is so much responsibility placed on the patient to sort through so much conflicting info to make decisions when they aren't medical professionals.
Most physicians prefer not to go to IV even in a chronic case. They figure it's already chronic, best to try Orals. The person isn't going to die between now and trying a variety of oral therapies.
Personally, I think there are many downsides and upsides to IV -- but both usually lead to the same conclusion, relapse -- so this is why the orals usually win out. Better to find something that works, so that even if the IV is used, you can turn back to the oral. Can't stay on IV forever even when you finally convince the doctor to do it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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