posted
I won't get on ABX until end of this month if US LLMD I am going to see gives me a diagnosis and starts treatment. So I have been trying some natural stuff in the meantime.
I didn't figure I would get better in a month, but I was told a herx could be seen within a few days of starting the protocol. I am taking 50% of his MAX dosage.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Oral magnesium will NOT get you where you need to be. I don't care how long you take it. We're not talking your blood serum levels - we're talking what's INSIDE your cells. Our body only absorbs a tiny fraction of oral mag, and the rest is excreted.
Magnesium deficiency is the number one cause of the majority of our symptoms. Until you fix it, it's the same cycle over and over again. Add to that certain antibiotics that make you more mag deficient, and down you go.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
A short trial of NAC, an over the counter supplement might help, take 600mg with your evening meal. if there is no untoward effect, take 600mg with each meal. It enhances liver function.
Posts: 60 | From Maine | Registered: Jan 2012
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Doc, I am having the tests ran you recommended earlier on Monday. Will take a couple weeks I imagine for results. I will try NAC
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I have had no herx reactions. Does this mean I do not have Lyme?"
No. Not every has a herx. It's usually when you have problems detoxing that that happens.
I only had what I think was a herx once in all my treatment. Lasted for a day.
I know someone who's been battling Lyme for 20 years and never had a noticeable herx.
Basically if you herx, it says "something" is going on. Something can still be going on even if you don't notice a change.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Well finally had my appt yesterday with the LLMD. I still quite Leary, confused and scared to take the ABX. Part of me keeps hanging on the the thought that maybe this really is all in my head and is just an anxiety disorder that I need to tackle and not lyme at all.
I was told I would get very sick on the ABX treatment. The worst part is that if it's anxiety then everything I would do to treat lyme is contrary to what I would do to recover from inappropriate anxiety. That is researching my illness, not being able to work out as I like or playing sports. And getting ill from the ABX that prohibits me from just living, socializing and moving forward, which is essential to recovery from anxiety.
I am just so confused.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Friday,
Thanks for the update
Bartonella is notorious for herxing, for those of us who are heavily infested. (Buhner says the bugs are too small, but everyone who is predominantly "bart" tends to disagree).
I was scared at the beginning also. My doc warned me I would be sick with herxing for quite some time.
I started treating April 2013, continued to play competitive sports until July 2013, and generally felt "better" until a wasp sting reactivated everything in Sept 2013. Then I began to herx with treatment.
Maybe you will be like me and not herx with initial treatment?
Do not let the fear of something prevent you from doing it.
Did your doc give you good detox ideas? The better your detox, the less uncomfortable you will be.
Also, if your doc included rifampin in the mix-yes, expect to go very slow and herx (increase in anxiety, mania, insomnia) for the first two weeks to a month). After that, for me, it was sweet relief from bartonella anxiety, insomnia, jitters, nerouvsness etc.
Believe me, it is worth treating, especially bartonella. You will start to enjoy life again. It is like sunlight coming through closed blinds.
Small to start, then once in a while, a totally sunny day.
Today I managed to go for a run/walk.
It's been over a year. Hopefully I can play soccer in the fall again.
Taking a year off is not too big a deal, for getting the rest of your life back.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I still have to read everything as I am really unclear still about what to take and when. I got the prescriptions and 4 other bottles of supplements that cost $400 just for the supplements. Not exactly sure how I am supposed to take it yet but I'm sure it's written it my package that I have to read. We were in a car yesterday for 13 hours so haven't got around to reading it yet.
I have spoken to others with similar symptoms of mine that have recovered as it was an anxiety disorder. So I am terrified of treating it as lyme for no reason if it needs to be treated as an anxiety disorder. Both require completely different treatment plans for recovery. It's hard for me to tell which it is. Anxiety can cause so many symptoms and so can lyme etc. LLMD said I have classic Bart symptoms. Well, those same symptoms are classic anxiety disorder symptoms.
This all can out of nowhere on sept 13 where I suffered a panic attack out of the blue. I then proceeded to feed that fear by obsessing and researching and trying to fix myself. Then combined with all the side effects from the psychotropic drugs they had me on and off, and I started having other symptoms that I couldn't explain through anxiety alone, but have since resolved.
Right now my most worrisome symptoms are constant vision problems, brain fog, fatigue and anxiety.
I am so afraid to make the wrong decision here. Treating lyme would contradict treatment for anxiety and vice versa. Really not sure what to do.
And how sick do you actually get? Will I still be able to work and support my family? I read that the ABX actually Mae you sick, not necessarily herxing. That's a lot of drugs I have that I need to ingest. Surely it will wreak havoc on my gut.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I think it would be scarier if you didn't treat Lyme (or rule it out) as a contributing factor for the anxiety. Lyme left untreated will cause more problems.
"The worst part is that if it's anxiety then everything I would do to treat lyme is contrary to what I would do to recover from inappropriate anxiety."
Actually, when I started antibiotics it TOTALLY HELPED with anxiety. It was better than any psych meds I ever took.
I have two friends with Lyme and psych issues who also had antibiotics work better for them than psych meds.
One was diagnosed as bi-polar for 30 years. It was ALL LYME. Her psych meds just stopped working.
"And how sick do you actually get? "
I've just gotten better and better since I've been on antibiotics.
Take antibiotics with food (even doxycycline, the package insert is outdated).
Take probiotics (good quality) and saccharomyces boulardii 2 hours away from antibiotics. That'll keep your gut in good shape.
"getting ill from the ABX that prohibits me from just living, socializing and moving forward, which is essential to recovery from anxiety. "
My friend was completely bed-ridden and in a wheelchair about 10 years ago from Lyme.
Since starting antibiotics, she's able to work full-time and actually runs/manages the place she works at now. She's a single mom and has more energy than anyone I know.
Antibiotics give some people their lives back.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Thanks Judie. That's sort of my issue.. I am not convinced I have Lyme. Despite the "Not negative" Igenex, and the LLMD clinical diagnosis. I guess I just have a hard time with it since I have been told for the last 10 months it can't be Lyme, and the Canadian testing for Lyme, Bartonella, and Babesia all came back negative, yet I am being clinically diagnosed as having them all by a US LLMD that has to fly under the radar because governments don't agree with what they are doing. It just all sounds a little hokey to me. I've never been a conspiracy theory type and I have a hard time believing the Canadian government testing would be inadequate. But on the other side, do I want to risk that I am completely wrong? Heck no! I am just confused and scared and don't know what to do. Take the ABX and treat it as Lyme, or ignore the Lyme diagnosis and believe in my countries health system that said I didn't have it.
My main symptoms are constant poor vision and floaters, severe anxiety, panic, fatigue, brain fog, and depersonalization.. Sounds alot like just anxiety to me even though it would be considered rare for a 40 year old in my position in life to suddenly develop and anxiety disorder.
I am just really struggling with downing all these meds and the potential dangers when I am not even convinced I have the disease. I hate that there is no way to really know.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Oh, I edited my above post while you were posting. I hope you got to read the added info.
It sounds like you're struggling. Your logical self knows what's going on isn't normal and wants answers. There's no reason to be suddenly anxious.
You want to believe the experts but it's hard to know which expert to follow.
Is there any way to treat the psych problems and Lyme together? Those both sound like they need attention.
You can still socialize when on antibiotics.
If you do have a bad herx, you need to remind yourself that it's temporary.
Maybe a psychiatrist who specializes in Lyme could help. They've probably seen both sides (people with anxiety who have Lyme and people with just anxiety).
"I've never been a conspiracy theory type and I have a hard time believing the Canadian government testing would be inadequate."
ALL tests for Lyme and co-infections are inadequate.
There's still no standard test for borrelia miyamotoi in humans.
There are something like 20 strains of babesia and the test only tests for 2 of them.
This goes for Lyme too. I tested CDC positive the first time infected. With reinfection I tested CDC negative even though I had bands (I had the bulls-eye rash and was waaaaaaaay sicker than the first time, tons of eye problems).
I never tested positive for babesia, but just started malarone (a babesia med) and had a very dramatic good reaction to the drug. It actually helped my gut. I had way too many babesia symptoms for the doctor to ignore.
I started drugs one at a time. I don't start a ton at once. This gives the body time to adjust.
Some things NEED to be taken together though. I'd call the doctor's office and ask what the gentlest approach is for starting your meds.
Posts: 2839 | From California | Registered: Jul 2012
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Friday13...
In your first post on this thread, you mentioned having 12 brain lesions.
Knowing this, how is it that you still consider that your symptoms could be caused solely by a (suddenly acquired) "anxiety disorder"?
If you're uncomfortable with your current diagnosis/treatment options, obtain a second opinion.
I mentioned previously I knew someone in your area chronically ill with similar symptoms who became well and would share her alternative doctor's information with you.
Just a thought...
Posts: 2075 | From Earth | Registered: Jul 2013
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posted
Phoiph I tired to message you about the alternative person but your mailbox was full. But I also went to see an LLND in Richmond hill who specializes in lyme and she felt I had it as well. But again. It's mostly the whole conspiracy theory thing that is bothering me. Believe me I want to get well and I obviously am not discounting lyme as I have now spent thousands for labs and LLMD and LLND fees and supplements etc specifically for lyme.
It's just that it's such an important decision to make and given I have been told by so many professionals it can't be lyme and that these LLMDs and igenex are scammers it's just slot of information to decipher. It's a sad truth that people take advantage of those in need. Not saying that's what happening here but I just don't know. I'm struggling with the idea that some very intelligent and good doctors and specialists here in canada are warning me about using USA medical care for lyme.
One side is very wrong and my life depends on figuring out who.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
(IMO) There's no plot (except maybe by the insurance companies to save money), just misinformation.
Here's a video of a couple who lives in Canada and the struggle they had trying to get diagnosed and treatment there.
The Canadian family doctor even said to the woman, "I don't know what you have but it's not Lyme."
I agree that a minority of doctors DO take advantage of people who are sick with Lyme, but not ALL doctors.
It's important to screen doctors, get second opinions, and talk to other patients.
I hope if you're retesting for Lyme you're doing a "challenge" test. Many people who take doxycycline for a month or two prior to testing will have a negative Lyme test (prior to antibiotics) turn to positive because the antibiotics gives the body a chance to make antibodies.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Thanks. That video touched me and made me cry all the way through. Very powerful.
I don't know about getting retested. I have already spent over $15,000 on my illness in the last 9 months between psycologists, testing, meds, supplements etc.
Now I have to pay a small fortune for lyme treatment if that how I decide to proceed. The supplements alone are going to cost like $800 per month. It's crazy. The probiotics are wry expensive and I bought this one called boluoke from the LLMD that is $170 alone. For 20 day supply. Its crazy. So I don't think I will be fitting in another expense for another igenex test. It won't do much to sway me anyways as I keep hearing those tests are inaccurate but the best we have.
I need to make a decision and soon. Do I have lyme like the LLMD am LLND said? Or am I simply dealing with a nervous illness that I need I deal with. I spoke with other people with symptoms similar to mine that are recovered and it was only anxiety disorder that came on by overdoing it. A nervous breakdown if you will. But I have also spoken to lyme patients with similar symptoms and Therein lies the issue.
I do not have the classic joint pain, flu like symptoms, or had the rash. My symptoms are mostly in my head. Blurred vision, brain fog, anxiety, panic, depersonalization and fatigue. I sleep for 10 hours a night but feel like I got none. Always tired. Both could be anxiety or lyme.
Some of my older symptoms have resolved over the months on their own such as balance issues, tingling and numbness etc.
I don't mean to sound all flakey but this is the biggest decision of my life. I want to get well like everyone here and have been suffering a Long time. My entire family is suffering daily. It's imperative I make the right choice here as this ABX treatment seems severe and could destroy my body.
I don't think I will be able to come up with the right answer so by default I believe I will treat it as lyme, simply because if left untreated it could get worse and be harder to treat whereas if it's anxiety or nervous illness, it affects my life greatly but it won't kill me.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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posted
Hi doc. Yup. I had everything you suggested done as well as a bunch of other stuff. All fine. I could scan it all and send into ya if you wanted to have a look. Posts: 53 | From Ontario, Canada | Registered: May 2014
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posted
Specifically, what was 25 OH D level?
Posts: 60 | From Maine | Registered: Jan 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Friday-I want to clear some things up, just for other readers.
Boluoke is not a probiotic-it is a biofilm buster. An enzyme. It helps break up the bacterial colonies so that the antibiotics can better attack the bacteria.
And you're right, boluoke is darn expensive! I can totally relate!
Also, you keep saying lyme disease, but "Lyme disease" encompasses many different coinfections also, especially when you are paying by the hour for a doctor's appointment, your doc doesn't have time and doesn't want to waste your money by doing the education for you. It's literally clinical diagnosis and treatment plan. There isn't much time for anything else.
This is why lyme patients are some of the most educated and medically savvy patients on the planet. We do our own research-we don't need it spoon fed to us.
I know it is hard, but if you are truly on the fence as you claim, you really need to do more reading.
Also, a great place to start would be to join a local support group. They will have an entire library of books for you to borrow, and other patients in your area to compare how their anxiety improved/did not improve with TBD treatment.
Folks on here are sick, and many have posted and reposted links and suggestions for you. Anxiety tends to give one extra energy, but I can assure you, those of us on here who do not have that, get very tired even reading posts. So mustering the energy to reply to you takes a lot.
Also, no need to compare your neurological issues with the textbook classic symptoms of arthritic lyme disease (swollen joints, migrating pains etc.)
Tick Borne Diseases and their symptoms are sometimes like apples and oranges. Each person is different. Especially when coinfections are in the mix.
Have you read the Burrascano Guidelines? Read it, memorize it. Especially the coinfection part.
This may be a big decision for you, but is it a hard one? Honestly?
Let's say you return to the anxiety disorder diagnosis, and go back on the same family of meds that you have tried in the past. Go to different psychologists and psychiatrists and expect different results, even though they continue with the same diagnosis and a similar treatment plan to the ones you have tried before.
Guess what?
The definition of stupid is doing the same thing over and over again and expecting different results.
I'm not saying you're stupid, I'm just saying you need to $hit or get off the pot.
No one on here is gullible enough to tell you what to do. We've been burnt by trolls and researchers before.
So many people have posted to try and help you.
We're both Canucks so I am being direct with you. I'm not dressing it up, or softening it. I'm trying to give you a gentle nudge to making a decision, committing to it, and trying it out. Tomorrow preferably. The sooner the better.
But please, make a decision and do something. It pains me to see you suffering so, and still not yet treating. Regardless of the path you choose.
Three months on the fence is such a waste of quality of life!
Good luck and best wishes with whatever you choose
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Greta. I hear ya. But I don't any of this lightly. And I have indeed been treating it or the last 6 weeks using buhners. I also spent $1700 for the ABX and supplements so I am clearly leaning towards treatment. As for research I have done a ton and that research is exactly what is causing the confusion here as there is so much conflicting information on the lyme world. It's crazy.
You must understand how hard it is to accept a dingos is from something with no reliable lab tests, and a list of symptoms that can encompass literally everything. To say it all sounds shady is an understatement. I have had some top professionals here in toronto basically say I am foolish and being taken advantage of, and I fought them and still pursued lyme, but it's clear their worlds have affected me and left me unsure. I apologize if that's difficult to understand, but it is something I am struggling with.
I am leaning towards taking the treatment. Not because I am convinced. But simply because I can't take the risk of it being lyme.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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posted
I had meningitis in 2007 , infectious diseases doctor suspected lyme proceeds to treat with iv rocephin , I had 2 spinal taps, I did not want spinal taps but could not speak ,
spinal taps and blood test for lyme Came back negative he immediately stopped iv .
It took 24 hours to stabilize me , and had a 50% surviving.
He ran every test you can think of. I was clueless about lyme testing back then.
And that was the start of health slowly declining a and the start of seeing different doctors and specialist about 100 in total , and told I had everything but not lyme.
I had trust with doctors back then, but then I started doing some research and everything pointed to lyme.
In 2011 I had to quit my job ,unable to do practically anything .
I kept going back and forth like you what to believe reading was confusing.
I was reading these forums for a while and other lyme sites.
Well I finally went to a lyme support group then everything made sense.
All story's were pretty much all the same. It was comforting .
So if I were you don't waste time , otherwise you slowly start losing quality of life , and slowly start losing things you worked hard for and start to lose pride.
Then after a while you you might not have anything ,but then it's only stuff.
That took a long time to realise , as it's only stuff.
So I kept my pride ,
[ 06-27-2014, 03:10 PM: Message edited by: lostlyme ]
Posts: 238 | From Where | Registered: Aug 2012
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posted
I am going to assume that the 88 was in nano-moles/ml, and that suggests adequacy. If it was nano-grams/ml it suggests an unexplained excess, as someone at your latitude shouldn't have such a high number unless they are supplementing fairly aggressively. I also hope the test distinguished between D2 and D3, as D3 is the preferred form.
Is there a disruption of your sleeping habits over the past year? If so, there could be an element of adrenal imbalance, as the adrenals produce epinephrine, norepinephine, and cortisol, and excess of those can give us symptoms of anxiety/agitation. If symptoms of anx/ag plague you 24 hours/day, you could have a pituitary or adrenal adenoma, as well as a thyroid nodule. If the symptoms wax and wane, and you have excessive sleepiness at inappropriate times of the day, then adrenal or thyroid dis-regulation is more likely.
Gretam's point is a good one, you must learn as much as you can about this, as the better you understand, the more empowered you will be in dealing with health care.
Do you have any chronic aches and pains with all of this?
Posts: 60 | From Maine | Registered: Jan 2012
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posted
Hey Doc. Yes, the result of 88 was in nmol/L. Not sure if it distinguished between D2 and D3.
As for my sleeping, I would say, in the last 2 years I started going to bed MUCH earlier. I used togo to bed around 11-midnight. Then I started going to bed around 9-9:30 as I was exhausted, but I was also working out more, so I chalked it up to that.
I have had my thyroid panel done it came up fine.
As for aches and pains. about 6 months before the anxiety and panic started, I had extreme pain in my one large knuckle of my index finger on my right hand. Doctor said Osteoarthritis, but nothing ever showed on imaging. It was so painful it would bring me to tears just tapping it lightly against a hard surface. Mysteriously, it went away. I thought it was from the Curcumin I was taking. Around the same time I also developed plantar faciitis (pain in arch of my left foot) that was chronic every day. It went away around the same time as the knuckle pain, to which I thought Curcumin was the answer as it is a natural anti-inflammatory. Now more recently the foot pain has returned (mostly in morning) but on my right foot this time. And the last few weeks, I also notice stuffness and aches throughout my body, but I attribute that to not being active anymore. I went from working out 6 days per week, to completely inactive.
I truly have been researching as much as I can. If interested, I will send you my lab results. IMageing which showed 12 brain lesions, bloodwork I have had done, as well as the Igenex. You seem to have a keen understanding of this. Are you an actual Dr?
I will private message you the link for the labs.
Now as for all my confusion on whether to begin treatment or not. Well, I started treatment on Monday. I have felt like truck hit me. I vommitted yesterday morning, feel very dizzy and unstable, weak and my eyes burn like crazy. Could be herxing I suppose, but I lean more towards actual side effects of the ABX themselves.
So in the end, I am taking the treatment, and praying that it was the right decision.
Like everyone else here, I just want my life back. To have it to abruptly ripped from me on Sept 13, 2013 is hard for me to swallow. Sept 12 was the last time I actually remember feeling normal or Happy. Sad.
All the best, and I truly thank everyone that has responded here. ALL OF YOU, who took the time to try and guide me. It is truly appreciated.
I wish everyone a return to great health.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
In regards to vomiting, are you taking the antibiotics with food?
The package insert is wrong and outdated for doxycycline (if you're taking that). You need to take it with food.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Yes. LLMD said to take one bite of food, then the antibiotics, then finish your meal.
The ABX I am on are
Azithromycin Hydroxychloroquine Metronidazole Minocycline Rifampin (Havent started yet)
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I usually eat 1/2 a meal, then take the antibiotics (one bite wouldn't provide enough cushion for me).
I eat a large meal when I take antibiotics or I can have nausea and vomiting. I also eat some carbs (like rice) with the meal, that keeps the nausea down.
I haven't taken the combo you're on but maybe one of them is making the vomiting happen, but I've been on some of the them individually. I'm allergic to 3 that you mentioned.
I've never taken flagyl, but I've heard it's a tough med (everyone is different though, I'm doing well on ones that are suppose to be tough and others that are suppose to be easy don't work for me).
I take tindamax as a cyst buster and I feel better on it.
Posts: 2839 | From California | Registered: Jul 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Your antibiotic protocol looks good! Congratulations!
I am sure you feel hit by a truck. That can be expected now that you are taking so many meds and are killing so many germs.
Metronidazole (flagyl) alone can make a person feel hit by a truck, even if they don't have lyme. That is because it kills so many things including intestinal parasites which many, many people have. (This is what my lyme doctor told me as to why many get sick on flagyl.)
Many people get very sick from flagyl at first. But, persevere and it will get better.
About 18 months ago I got C diff which is treated with flagyl. I thought I would die at first, the flagyl made me feel so horrible! No kidding. But, the doc's office encouraged me to continue and things finally got better.
I have a friend who was put on flagyl for some intestinal ailment. She couldn't tolerate it and stopped it.
So, try taking the meds in the middle of a meal and try to continue taking them. See if things don't start to get better in about 10 days.
Drink lots and lots of water to flush out your body, eliminating all the dead germs that the antibiotics are leaving behind.
Squeeze fresh lemons into the water. Lemons are a natural cleanser. You will be amazed at how much this helps you. And, if that doesn't help enough, then take Alka Seltzer Gold with lemon squeezed into it. You can do this 3-4 times per day.
That really will help you detoxify. Hope you start to improve soon.
And, heed the warning in Burrascano about things NOT to do while on flagyl:
"Important precautions:
1. Pregnancy while on Flagyl is not advised, as there is a risk of birth defects.
2. No alcohol consumption! A severe, "Antabuse" reaction will occur, consisting of severe nausea, flushing, headache, and other symptoms.
3. Yeast overgrowth is especially common. A strict anti-yeast regimen must be followed.
4. Flagyl can be irritative to the nervous system- in the short term, it may cause irritability, "spacey" feelings, etc. Longer term, it can affect the peripheral nerves, causing tingles, numbness, etc. If mild, a change in dose may be required. Often, extra vitamin B can clear these symptoms. If the nerve symptoms persist or are strong, then metronidazole must be discontinued or these symptoms may become very long lasting.
5. Strong Herxheimer-like reactions are seen in almost everyone." (page 15)
If you use mouthwash with alcohol in it, you can vomit from that. If you put rubbing alcohol on your skin while taking flagyl, you can vomit from that.
It is like an antabuse reaction. So, look out for products you may be using that include alcohol.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks TF. I am experiencing severe dizziness and loss of balance and coordination. Actually fell down this morning. Is this a normal side effect from what you know.
Oh and the runs to go along with the nausea.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, these are possible side effects of flagyl.
For example, listed side effects include:
ataxia (lack of coordination in muscle action resulting in unsteady movement and staggering gait)
dizziness
incoordination
weakness
and, nausea is a VERY common side effect
plus:
vomiting
diarrhea
dry mouth
etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
My doc always starts me on one med at a time so I know how I'm reacting to each one.
"I am experiencing severe dizziness and loss of balance and coordination. Actually fell down this morning. Is this a normal side effect from what you know."
That happened to me with minocycline. It effects the central nervous system.
It felt like I was constantly being pulled towards the ground.
It was intolerable. That and my neck started to swell up on the second week of it. I was allergic.
I do fine on doxycycline though. No balance issues or allergy at all. A lot of docs don't prescribe it in the summer because of sun sensitivity. I just avoid the sun.
Posts: 2839 | From California | Registered: Jul 2012
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posted
I wonder if it's the monocycline for me too. I assumed it was the flagyl. I will give it a few more days and see if it corrects. I haven't even started the rifampin or hydrochloroquine yet. Sheesh. It's knocking me on my butt. Been stumbling around crying all day. All my symptoms of anxiety and disassociation and brain fog and vision problems are worse to go along with nausea, dizziness and coordination issues caused by the drug. I'm tempted to stop taking them. This must be my body's way of telling me something is wrong.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, dizziness, diarrhea, and vomiting are COMMON with minocycline.
So, perhaps your case is so bad because you are on both meds.
Stopping the mino might be the key. Do that for a few days and see how it goes. If it helps, then call the doc and tell her about it.
Your lyme symptoms (anxiety, disassociation, brain fog, vision problems) worsening are due to herxing. So, use the lemon water and Alka Seltzer Gold for that.
I made lemon water my only drink during lyme treatment. This way, any time I drank anything, I was helping myself detox. Other drinks aren't helping you with the process.
Did we forget to tell you that with lyme treatment it will get worse before it gets better?
Usually the lyme doc will mention this also. So, don't get discouraged. It can be tough in the beginning.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Judie
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If you do try lemon water, make sure you rinse your mouth out afterwards with plain water. Lemon can erode tooth enamel.
Azithromycin made me a short-tempered b****. It did not get better with time (I also became allergic with neck swelling/rash). I had to stop it.
Ceftin, doxycycline, tinidazole and bicillin have all just made me feel better without the crap reactions. Malarone seems to be helping too.
"I'm tempted to stop taking them. This must be my body's way of telling me something is wrong."
If you do stop them, see how you do the next day. Hopefully the symptoms will diminish. I could usually tell I was better when I woke up the next morning after having a bad reaction to a med.
Just start back with one at a time and give it a few days before adding the next one.
Posts: 2839 | From California | Registered: Jul 2012
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Ya. I'm trying to remain upbeat. Not succeeding but trying. Lol. Are you still on the ABX? How long?
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
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Yes, remaining upbeat, quite the challenge at times. It's definitely helpful to take it all stride. All we can do it try, right?
I try to focus on what I can control since this illness can feel so out of control sometimes. When I go to places (like worry) that I can't control, the anxiety goes nuts.
I was infected in 2012 and treated for 6 months. I was doing much better then got reinfected in the fall 2013.
I delayed treatment with antibiotics for 2 months (tried alternative stuff) and went downhill fast.
I'm still treating. Recovery is slooooooow this time.
I don't know if it's the delay in treatment or the co-infections, but this is a lot more work than the first time.
I have all the symptoms you mentioned and more. I must stress that I AM doing better with treatment than without.
It's worth it to keep going.
I would give a new med a week or two to see if the reactions calmed down. If the side effects (herx or whatever) are unbearable, my doc has helped me out with suggestions or we've just ditched the med and swapped in a different one.
For me, my allergic reactions come on pretty fast (usually in the first week or two).
Posts: 2839 | From California | Registered: Jul 2012
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Well I wish you another full recovery. Sad that you bet it once and got reinfected. That's terrible. You got not again? Did you get the rash?
We all just want to be normal again. I tell ya though. This has out a lot into perspective. I see friends complaining about little things in their lives like weather or a cold and I dont say anything but I always feel like telling them to shut it, as they have no idea what suffering truly is. But I can't do that. I need to learn to be sympathetic again. I have looked inwards for 10 months without seeing the world around me. I pray I at leat am on the right track now despite my doubts.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Judie
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Yes, got the rash twice and saw deer both times. The second time I even had repellent on. The rash looked NOTHING like a bullseye. More like eczema.
I never saw the tick either time.
The first time, I showed the rash to several doctors and they said it was a spider bite or allergic reaction.
A lady at the health food store sold me an oil that was suppose to get rid of skin problems (including infections). It did nothing.
I went to a new PCP to get a script for physical therapy and on a whim showed her the rash. She knew what it was and immediately put me on doxycycline, but only for 3 weeks. A friend warned me that wouldn't be enough and that was the beginning of my journey.
I found a Lyme doc during that time.
The second time I recognized the rash, but even with the early knowledge, my mind was so screwed up by the Lyme I followed the wrong advice and did alternative. The psych issues were way worse the second time.
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