Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Friday13...
You have already received an overwhelming amount of advice here, so I just want to offer that I know of someone in Ontario who was very ill with Lyme and has become well.
I'm sure she would share with you her experience and the doctors in her area who have helped her.
PM me if you would like to contact her...
Also, I have had 100% of the symptoms you describe (and more), was ill for 8 years and homebound for 5, and am 100% well now.
Don't EVER give up...
Posts: 1886 | From Earth | Registered: Jul 2013
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posted
Thanks everyone. I figure I have nothing to lose by going to the LLMD whether I have lyme or not. I will let the doctor make that decision despite all the warnings I have received from medical professionals here in Canada. I keep getting told these LLMDs just prey on the suffering like vultures. Even I am still skeptical but it's an avenue I need to explore.
Applewine. I'm sorry to hear your symptoms did not resolve. The only symptom I had before the drug was an out of the blue panic attack. Then I was I kept having these weird attacks where I get tunnel vision and then I get I feel a surge if fear. I can't focus. And feel detached from my body. It's quite strange. And very scary. The doctor prescribed klonopin to me to which I am now dependant. I have continuously degraded as the months. They have tried 3 different antidepressants as well but nothing seems to help.
So could many of these symptoms be drug related? Perhaps. I don't know. Doctors say no. But who knows. That is my biggest fear. Getting misdiagnosed. But I have to pursue it especially given I had positive bands on my igenex test.
It's difficult for me to accept that at 40 years old with no change in my life, Active and fit and happy, that I would suddenly develop a mental illness or anxiety disorder. Sure I suppose it's possible. And if the LLMD doesn't think it's lyme then I will continue trying to work on it as a mental illness as I have been. (Spent thousands in therapy)
At the end of the day on sept 12, 2013 my life was great. On Friday the 13th the next day my life changed and has been getting worse. I want my life back. My family and friends want me back. And most if all, my 2 young children need me back.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Well I got my Epitope Confirmation Tests back today.
Negative for Band 31 IgM, but Positive for Band 31 IgG.
So based on the tests and my symptoms it is looking like I have Lyme. I am terrified, and everything I worked so hard for is about to come crashing down. Pay so much in taxes in Canada to pay for our free healthcare, and now I'm going to have to go broke getting US treatment.
But the money is not the biggest worry. The biggest worry is treatment not working.
I am so scared. I was never depressed a day in my life until a few months ago. Was so happy before all this. Now I just want to die. Have even been to hospital twice on Form 1 lockdown for threatening suicide. What has happened to me?? This is crazy.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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posted
Friday13 - We are from the Niagara region of Ontario.
3 years ago our daughter developed every symptom you have listed in your earlier post, including sudden onset anxiety/panic attacks (caused by bartonella). She had a negative ELISA here and was denied further testing. She had a couple of IND bands on the Igenex WB and tested positive for bartonella hensalae. Our PCP also denied lyme or bartonella, and even though she was experiencing every symptom of encephalitis and bartonella he still insisted that she only needed Ritalin, clonipin and a good spanking.
Good for you for figuring out your problem and finding the doctor to help you solve it. Dr McS has been featured on CBC "The Current" a couple of times. The documentaries were good - you can maybe find the podcasts.
Some many people trust their PCP with their lives and will find no help. You are your own best advocate. Not even the LLMDs know everything, but they will get you on your way.
Our daughter underwent treatment with Dr P (the other ILADS recommended LLMD in upper NY state) in Buffalo NY for 2 years and was weaned from abx in Apr 2013.
I was hesitant to withdraw all treatment and continued on my own with Buhner's full bartonella protocol, along with some herbs that also treat the protozoan infections.
Both my daughter and I have healed using long term, low doses of Buhner's herbal protocols. I have used no antibiotics myself. Our daughter has had further improvement above and beyond what we experienced with antibiotics.
Keep active, but not to the point where your immune system is compromised. Too much exercise will hurt as much as not enough. You need your immune system to be functioning properly to help eradicate infection.
If you have bartonella and plan on using Buhner's protocols, please purchase his books:
Healing Lyme Disease Coinfections: Mycoplasma and bartonella
Herbal Antibiotics for resistant bacterial infections
"Glyphosate, the active ingredient in Roundup®, is the most popular herbicide used worldwide. The industry asserts it is minimally toxic to humans, but here we argue otherwise. Residues are found in the main foods of the Western diet, comprised primarily of sugar, corn, soy and wheat. Glyphosate's inhibition of cytochrome P450 (CYP) enzymes is an overlooked component of its toxicity to mammals. CYP enzymes play crucial roles in biology, one of which is to detoxify xenobiotics. Thus, glyphosate enhances the damaging effects of other food borne chemical residues and environmental toxins. Negative impact on the body is insidious and manifests slowly over time as inflammation damages cellular systems throughout the body. Here, we show how interference with CYP enzymes acts synergistically with disruption of the biosynthesis of aromatic amino acids by gut bacteria, as well as impairment in serum sulfate transport."
Don't be scared. I know how you feel.
The whole time our daughter was in treatment I was suicidal and in pain as well. It is so hard to see past, but it is all due to brain inflammation and neurotransmitter disregulation caused by your infections.
Decrease your intake of inflammatory food - wheat, gluten, casein etc., anything processed really.
A couple of good diet protocols include Terry Wahls and ThePerfectHealthDiet:
This is a good site as well because, like cancer, lyme and the coinfections require suppression of the immune system to proliferate. Support the immune system and they will gradually resolve:
If your immune system is functioning optimally you will recover.
If I was you I would start on LOW (1/4) DOSES of everything listed under Buhner's bartonella protocol on his webpage, since you already seem to be gravitating in that direction.
Japanese knotweed is the only herb we are able to take at suggested dosages. All the rest cause us significant herx reactions at higher dosages.
CanadaDrugs.com will fill prescriptions written by Dr McS and deliver them to your door. Put all payments on a cash back credit card so you can at least get some money back.
We ended up rolling our debts back into our mortgage when time came to renew. We will catch up on the mortgage later. It ended up costing us about $30,000 for her treatment, so about 1/2 of a university education or all of a new car, which is doable and was so worth it. Mine - treating with herbs, has cost next to nothing.
Keep your family close to your heart. Accept their support. They need you and YOU WILL RECOVER. WE HAVE.
We continue with the herbal protocols and will do so for at least another year, but our pain, cognitive, neurological symptoms have all resolved. Our daughter has also recovered from her symptoms of Asperger's, Tourette's, ADHD, raging, social regression, executive and cognitive impairment. It was all caused by bartonella (and possibly an unidentified protozoan) infection.
Paradigms have to change and I think that is what these illnesses are all about. Humanity can't keep living the way we have been. Destroying the environment, spraying toxins on our food, injecting our children and ourselves with immune destroying vaccinations and adjuvants. We need different attitudes, different ways of looking at things. We are being forced into change. Kicking and screaming.
You are a competitor. You know not to look back. Keep your eyes on the prize.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Friday13, you have gotten great advice.
I just wanted to throw in that the unfounded panic attacks may very well be Bartonella. Been there and had to be diagnosed clinically for it.
I also wanted to let you know that people DO get well from this, and I am one of them.
-------------------- 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
friday what up,, let me sum it up for you, ive had the same symptoms that you have, and let me emphisise especially the d/p d/r thats the worst, ive been frying and in lala land with severe panic attack and vertigo and a whole list of other ****, ive never treated once just cause the neuro, stuff but i want to get better also,,, do me a favor if you start treatment and get relief from the neuro and neuro only thats all i care about please let me and putnam no if it helps i dont think anyone else on this board complains more than us about d/p d/r p.s. its lyme
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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posted
i guess i really didnt sum up nothing, but if you need to talk to someone who completley understands let me no ill give you my no. i could tell you what ive been through and you might feel better, im frying hard every second of my life and im still kicking lifes ass,,, hope you feel better
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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I am just trying to take one day at a time right now. When I would mountain Bike Race before I got sick, I would get into a Cadence and just flow through the trails. I'm just trying to find my Cadence now despite the symptoms. Trying to pretend I'm in a long haul race and everything hurts, and I need to breathe through it, find my Cadence and push..
I can only control how I react to it at this point, and I have spent 8 months reacting poorly as if my life is over. From now on I need to start viewing this as a race. Just temporary until I eventually cross the finish line. I WILL get my life back. I WILL get over this. I WILL be the husband and father I was...Better in fact!
Posts: 53 | From Ontario, Canada | Registered: May 2014
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Rowingmom: you are my HERO. Thank you for giving back, and helping others.
Friday13, one step at a time. It's okay to be sick. It happens. Whether it's cancer, a major surgery, Parkinsons, or Lyme disease.
At some point, a family gets hit. It can be a lesson. It can bring a needed change. It's life.
Hang in there-- hope you can start some Lyme and Bart treatment soon -- good thoughts--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Friday you still there? I lived in Windsor 8 years back in the early 90s loved it there...
Anyways, I can put you in touch with the best Canadian LLMD out in BC. He will listen to you, explore your symptoms, and will point you in the right direction either with a treating doc in CA or the US.
The great thing about this doctor is he charges you NOTHING! You can call him when you want or email and he will respond. Anytime.
It is a must that you need to confer with him get back to me or send me a PM.
PS Ive been where you are, I am around the same age as you and was extremely physically fit before sickness. I know the panic attacks well, and you are right as to say out of the blue at age 40 is not normal.
But you can beat this.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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You will get your life back and you will be even better; more aware of what your body and the bodies of your children need to be healthy and to stay healthy.
My 17 year old son comes home every day after school and cooks himself up a big pan of organic kale with grassfed butter. He knows it's good for him because his acne clears up when he eats properly. Neither of my kids now bat an eye at eating sweet potatoes, beets and greens for breakfast.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
I would look for some kind of trigger; Certainly a tick, or other insect bite could directly give you Lyme and/or any number of coinfections, but these might all be red herrings. My assessment of anxiety and panic is that it represents a failure of the liver and kidneys to rid the body of the breakdown products of neurotransmitters, hence the breakdown process becomes cluttered and an over abundance of neurotransmitters results, leading to overstimulation of receptors. Direct insults to the liver and kidneys can do this, such as chemical toxins and heavy metals. This begs the question: Did you have any dental work/immunizations/or tattoos done in the month or so prior to this syndrome?
Next, has anyone assessed other wellness factors? These would include metabolic profiles, Thyroid function tests, testosterone level and homo-cysteine level, as well as autoimmune markers a cholesterol panel and a 25 hydroxy vitamin D level? These things rise to critical importance at the age of 40.
On a personal note, I experienced panic disorder like this 5-6 years ago, so I can understand how you might feel like you are at the end of your rope. The intervention that seemed to afford me relief and I still take it daily was N-Acetyl Cysteine. This is a precursor to glutathione, one of your liver's most potent detox enzymes. I had taken it in small doses occasionally prior to the panic problem, but when I upped the dose to three times daily, giving me coverage around the clock, so to speak, the anxiety was almost completely lysed. It seems to me you could find a doc who would at least run the tests mentioned above to get the ball rolling, but if not try www.lifeextension.com, they offer some reasonably priced testing.
Posts: 60 | From Maine | Registered: Jan 2012
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posted
Surprise.. Thanks for the kind words. I am trying to keep fight
Rowingmom..Thanks for the Links. You are awesome.
Docluddite. There really isnt any trigger. That's the issue. I feel poorly all day, every day. There are some times where it's better than others, but I have not had a "good" day since October. I think I had some dental work done prior, yes. One filling, and a cleaning. Not sure of the timelines. WOuld have to look it up. No Tats or Immunizations though.
I have had bloodwork done for thyroid twice as well as a ton of other bloodwork. As well I have had an MRI which showed 12 brain lesions which sent me down the path of MS. MS was ruled out by specialist but I still don't know what these 12 lesions are from. That's concerning. I have not had testosterone or Homo-Cysteine level done though. Or choloestrerol levels.
I have had many tests and doctor said she ruled everything out, but I know she hasn't. So I took matters into my own hands. I had asked several times to see an Endocronologist but she would not refer me.
I am currently searching for a new doctor but Its hard to find new doctors accepting patients in Canada. And going to a walk in clinic is a quick 5 minute visit meant for simple problems.
If it's all in my head and just a panic disorder that came out of nowhere, would I not have ups and downs? Would I not have good days and bad days? I have bad days every day. I truly suffer from the time I open my eyes until the time I get to sleep. Anxiety, Terrible vision problems that I can't even describe properly, Anxiety, panic, Brain fog, dizzy spells, muscle twitching and more.
I have said to my family all along. Maybe it could be all in my head. I worry about a misdiagnosis for sure. All I know is I am not well, and truly suffering. I went from the happiest man, to a man that wants to go to sleep and not wake up. Not because I hate the peices of my life, but because I do not want to suffer anymore. I have everything to live for, and the foundations of my happy life are still here, but I can't see past the suffering.
I have been going round and round for 9 months trying to figure it all out. I have not responded to Therapy or drug treatment for mood disorder (but maybe I need to give it more time, as I have been stubborn about the drugs) I tried Lexapro, then Pristiq, then Paxil, and have been on Clonazepam the entire 9 months, although up and down with dosing. Currently trying to taper off again. I hate this drug!
Could it all be anxiety? I suppose. I am open to anything. I just wish I had answer and could treat it. I feel as though the medical field is failing me. Why is this so hard to figure out? It's Been 9 Months!!
Should I try another anti-depressant? Should I up the poison Benzodiaepine I am taking? Should I pursue Lyme? Something else? I just have far too many questions with no answers.
I had an LLND see my Igenex results and say it was suspicious for Lyme, and my Epitope IGG came back positive, so that's what led me here.
I'm confused and lost. I just want some relief. I would give anything for one single good day right now. A day that I could be the husband and father I was. A day where I could look at my wife and family without tearing up. one single day that I could just not think about this or feel it. Just one...
Will check back in Monday after LLND appointment and let you all know what she says.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Friday13:
As well I have had an MRI which showed 12 brain lesions which sent me down the path of MS. MS was ruled out by specialist but I still don't know what these 12 lesions are from. That's concerning.
Anxiety, Terrible vision problems that I can't even describe properly, Anxiety, panic, Brain fog, dizzy spells, muscle twitching and more.
Could it all be anxiety? I suppose.
Lyme Disease causes you to be deficient in magnesium. The Lyme bacteria live within our cells, using the magnesium for themselves.
Everything in the cells runs on enzymes, which need magnesium to work properly. When the cells are deficient in mag, they cannot make energy properly, and we suffer.
Symptoms of low magnesium include Anxiety, depression, insomnia, panic attacks, agoraphobia.
Photophobia, especially difficulty adjusting to oncoming bright headlights, Loud noise sensitivity from stapedius muscle tension in the ear.
Premenstrual irritability, menstrual cramping.
Magnesium deficiency symptoms involving the peripheral nervous system include numbness, tingling, and other abnormal sensations, such as zips, zaps and vibratory sensations.
Magnesium - treating a deficiency http://drmyhill.co.uk/wiki/Magnesium Spend some time looking through this site, Dr. Sarah Myhill has so much good information.
I can tell you what the brain lesions are likely from. It involves excess fibrin and clotting.
If your cholesterol levels are high, it's because the Lyme bacteria use the cholesterol pathway to function, and the body makes more to compensate.
The blood test markers for inflammation are probably high, due to the ongoing systemic infection.
What you can do: Read about magnesium deficiency and how to supplement. You need a good level of Vitamin D for the magnesium to absorb, so you may need D3 supplements.
Boron helps to keep the kidneys from peeing out magnesium. I found that my fingernails improved dramatically when I started taking it.
You also should read about Essential Fatty Acids, like fish oil. This improves cell wall integrity, so the cells function better. The liver uses EFA's when making Glutathione, which it needs to detoxify poisons.
If you google for anxiety and magnesium, or fish oil, you can find many articles and studies. I think that supplementing magnesium and Essential Fatty Acids will improve your mental status.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Nutrient and mineral deficiencies caused by parasitic infection is the basis for Buhner's nutritional recommendations.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
Very interesting on the Magnesium. But I take Magnesium Chelate 600MG per day, as well Omega 3 Fish Oil, so I don't think I am Magnesium deficient. However, I have only been doing this for about 3 weeks. I TAKE so many supplements every day trying to cure myself. My office looks like a pharmacy. No joke. And I just got another order today that's supposed to treat Bartonella. I figure I'll take this stuff before my appointment.
I also take a bunch of stuff for anxiety. Nothing seems to work yet though, except stomach pains and the runs..lol
Posts: 53 | From Ontario, Canada | Registered: May 2014
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posted
Frida13 you say I been going round and round for 9 months trying to figure it all out. I have not responded to Therapy or drug treatment for mood disorder
You have been given some great advice. Try to keep a chart of some sort with meds you take and how you feel and rate 1-10 on symptoms ,even rate when dont take anything.
Do this everyday, this way when you go to a doctor you have everything documented and will be able to see a pattern .
No sense in taking unnecessary meds and wasting money and quite possible another tickborn illness that needs to be addressed first.
Detox , watch when taking probotics with antibiotics usually 1 hour before or 2 hours after . for when taking magnesium 2 or more hours away from antibiotics.
This pattern has worked for me. I have gotten close to 100 percent from lyme and bartonelia . I did this for a long time with my protocol.
My LLMD told me if I'm lucky I would regain about 60% of my life back
I noticed little improvements in a month or two, if there were no improvements , well time to reasses your protocol with doctor. Go over your chart and see what worked or helped . This way doctor can tweak or take you off of med and see if he had missed something.
Posts: 238 | From Where | Registered: Aug 2012
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posted
Thanks. I do plan on starting a chart of my symptoms. It's good advice. I take so many supplements right now it would be hard to say what any of not does individually.
The only thing I have noticed after 3 weeks of doing buhners protocol is that my body temperature seems to have risen to near normal levels. I was consistently in the 96s. I am now high 97s. I have a bunch of stuff on the way to start buhners bartonella protocol as well as thats the anxiety and panic one if anything I assume, so I figured it was worth a shot. What do I have to lose right?
Posts: 53 | From Ontario, Canada | Registered: May 2014
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
"But I take Magnesium Chelate 600MG per day, as well Omega 3 Fish Oil, so I don't think I am Magnesium deficient. However, I have only been doing this for about 3 weeks."
Magnesium chelate? That sounds good, as the "ate" forms of mag absorb better than the "ide" forms. Magnesium oxide is cheap and manufacturers put it in their multivitamins, but it does not absorb well.
Dr. Sarah Myhill recommends magnesium injections, saying that they work better than oral forms. I recently read a post here from someone who had gotten a magnesium intravenous, and she said she felt ~normal~ for the first time afterwards.
You may need to take large doses of magnesium, divided throughout the day...for a long time. Too much magnesium will give you loose stools.
Magnesium Oil is not really an oil, but a concentrated suspension of magnesium that you apply to the skin. I tried this at one point, applying it to my legs. My skin felt sticky like after you swim in the ocean.
Epsom Salts are a mineral compound of magnesium and sulfate. When dissolved in water, this is absorbed through the skin, by means of a foot soak or a bath.
I'm not saying this will cure you, but it should help to relieve some of the symptoms.
Regarding the fish oil, I have noticed a reduction of headache, body and joint pain when I take certain pharmaceutical quality fish oils, especially those with very high levels of EPA. Lower quality fish oils give me gastric upset.
Did your stomach pains and loose stools begin when you started one of the supplements? I've learned to start one at a time, and see what happens.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
If you did indeed have a filling done in the months prior to October, then that should be given strong consideration as the trigger. If the filling was a silver/nickel/mercury amalgam then it's a lock, in my book. The reason it started in October is that that is when natural vitamin D levels start plummeting, and with low vitamin D, your liver will not be able to keep up with the amount of mercury coming off the filling. Look up erethism. Has your doc tested your vitamin D level? If so what was the #? If the number falls in what is considered the low end of the normal range, most docs who aren't vitamin D literate will call it normal. The number should be greater than 50 ng/dl. They may measure it in Nano-moles in Canada...
Posts: 60 | From Maine | Registered: Jan 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
DocLuddite talks about how low levels of Vitamin D affect the liver's ability to remove mercury from the bloodstream.
Low vitamin D also affects how well the body can absorb magnesium. Since people with symptoms of Lyme Disease are already low in magnesium, low vitamin D can make symptoms worse.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Hi Doc, The filling was not made of metal. It's a white material. I have no metal fillings in my mouth. I have a doctors appointment set for June 10, where I will ask for more of these tests you all are recommending. I did just check some of my bloodwork I have had done, and I have a high Absolute Neutrophils Count. Just a little over the range limit at 6.610. Proper range is 2.0 - 6.3. There are many reason this could be high such as stress, certain Meds, Bateria Infection.
Also, my Microalbumin/Creatinine Ratio is a little on the outside limits at 2.0. This could indicate Kidney damage.Common causes include diabetes, high blood pressure, and autoimmune disorders.
Posts: 53 | From Ontario, Canada | Registered: May 2014
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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: 1886 | 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
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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
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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
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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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posted
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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posted
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
Frequent Contributor (1K+ posts)
Member # 38323
posted
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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posted
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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Member # 38323
posted
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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