Hello. I am new here. I have been suffering for 8 months with what I keep being told is anxiety and panic and all in my head. On Friday, September 13, 2013 I suffered a severe panic attack out of nowhere.
I am 41 years old, with a great family, 2 great young kids, a great career and social life. Active and fit as well. I would work out 5X per week and participated in Mountain Bike Races and Marathons.
So to say it is odd I would suddenly experience a panic attack out of nowhere and then go on to suffer from various symptoms along with continued anxiety attacks is an understatement.
Even the physchiatrist said it would be considered rare and unusual given I have no history of it, and it usually manifests in young people.
I have been bounced around for the last 8 months all over the place, from doctors, to therapists, to specialists, with no relief in sight. I have been drugged up but yet still find little relief on a daily basis.
I have even seen one of the top MS doctors on the country because 12 lesions were found on my brain. She sent me for more tests, and said I do not have MS....
My psychiatrist (never thought I'd have one of those) even thought it prudent to explore all physical causes, but I am running out of options.
So that's what brings me here. I had an Igenex test done,
On IGM I show positive (1+) on band 31, IND on 41, and 83-93.
On IGG positive (1+) on 31, 41, and 58. IND on 39.
On co-infections I showed exposure to Bartonella henselae. IGG 40
Here is a list of some of my more severe symptoms I deal with daily. I would like your opinions on whether or not I should pursue this avenue farther. I just want my life back. The more severe ones are cognitive.
Vision Problems (Blurred, focusing, floaters, shadows) Brain Fog Anxiety and panic attacks Dizzyness Chills Shocks and Tingling Muscle twitching all over Fatigue Headaches daily Depression (Never been in my life until now) Depersonalization/Derealization Numbness in extremeties Bottom of right foot sore in morning
I have suffered other symptoms but these are the most common right now.
And as hard as this one is to admit, I feel suicidal, as I have lost hope in recovery, and can't imagine continuing on like this. This is not living. This is merely breathing and surviving.
I just have such a hard time accepting this is "All in my head" and created from an anxiety disorder brought on to a stable, happy 40 year old man with a great life. I guess it's possible, but it doesn't make sense.
I have also not responded to thousands of dollars in therapy, or drug therapy very well either.
I also think sometimes some of the above symptoms could be caused by the Clonazepam (Klonopin) I am on. So I want to be careful about jumping to conclusions.
But I guess what I want to know most is, Can Lyme manifest itself really quickly through a panic attack, where I felt ok one day, and then suffering since. Can Lyme or Bartonella manifest mostly through cognitive things as I described?
I don't really deal with shooting pains through my body so I am unsure.
I have been so pro-active since this began and spent several thousand dollars, and seen countless doctors, yet I still have no answers, and am no better. I just don't know what to do next, so at this time I am pursuing Lyme, trying to rule it out, or rule it in, and deal with it.
But I cannot find any doctors to help me, and get looked at as if I am silly when I mention it. I live in Ontario Canada, so I would have to travel to US for treatment, but I need more info before I go that path.
Could lyme or Bartonella be the cause of my life changing on Sept 13? Or would all of this had been more gradual over time?
All the best
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Breaking up the text for easier reading for many here -
[ 05-30-2014, 09:31 AM: Message edited by: Friday13 ]
Posted by Pocono Lyme (Member # 5939) on :
Definitely pursue treatment with a LLMD. Based on your symptoms it sounds like you may have lyme, bartonella and babesia.
I can't remember off the top of my head but I believe some of the bands you tested IND for are Lyme specific.
My symptoms started about a month or two after being bitten. It went neuro pretty quickly. High fevers to stiff neck then lightheadedness to vertigo and the list went on. Many of your symptoms.
Within 18 months of first symptoms, I was bedridden. Please don't wait.
Others will be replying I'm sure.
Posted by Friday13 (Member # 43697) on :
Thanks for the reply. We have no LLMDs in Canada so I may have to visit a US doctor which is going to get extremely costly. Ugh.
Posted by Lymetoo (Member # 743) on :
Mountain bikes and marathons.... sure could have been exposed to ticks.
Any chance you could get to Upstate NY for treatment??
You need to be evaluated by a competent LLMD!!! It does look like you have Lyme specific bands that can only come from Lyme disease.
An yes, do be aware that Klonopin can cause depression.
Posted by Friday13 (Member # 43697) on :
If going to upstate New York is what it takes I will go. Can anyone recommend a doctor?
I inquired about an initial skype consult with a dr. R**. Waiting to hear back.
**edited name of LLMD**
[ 05-04-2014, 08:27 PM: Message edited by: Lymetoo ]
Posted by TF (Member # 14183) on :
Take a look at this link. A person from Toronto looking for a lyme doctor:
And, read this explanation of the Western Blot to see that yes, your test (plus your symptoms) says that you have lyme disease:
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
[---- from DR C's update from 2005 --- ----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]
This is true regardless of whether it is IgG or IgM"
"Psychiatric Lyme has been linked with virtually every psychiatric diagnosis and can affect people of all ages and from every walk of life.
A former honor roll student is diagnosed with Attention Deficit Disorder and pegged as a “problem kid” because he can’t sit still in class.
A lawyer has to close her practice because she can’t concentrate and suffers from anxiety attacks.
A young mother is so sensitive to noise that she can no longer tolerate her baby’s cry and is afraid that she will harm her child
A retired salesman develops a compulsive habit of writing all over everything—he covers everything from the tablecloth to matchbooks with meaningless scribbles.
Family members are baffled by these transformations; counselors and physicians are consulted, often to no avail.
While these individuals may also have migrating muscles pain, headaches and problems with their joints—common signs of Lyme—these symptoms are rarely picked up in a mental health evaluation.
And when traditional psychiatric medication fails to produce a cure, the patient grows more desperate"
Your test results seem to indicate Lyme. It's no wonder the psych meds aren't working, they aren't treating the real cause of the problems.
I've known two other people personally who's Lyme symptoms were mainly mental. Both were first misdiagnosed with mental illness and given psych meds didn't work.
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Breaking up the text for easier reading for many here -
[ 05-04-2014, 09:33 PM: Message edited by: Robin123 ]
Posted by Friday13 (Member # 43697) on :
Wow. This is scary stuff. I appreciate the info guys, but it's certainly terrifying to think I may have Lyme disease. I had hoped I would be able to gets life back but 8 months in and I still suffer. And if I get a Diagnosis of Lyme, the future certainly looks bleak.
Posted by Judie (Member # 38323) on :
"And if I get a Diagnosis of Lyme, the future certainly looks bleak."
Actually, you'll start getting better because you'll be able to treat.
One person in my support group who was diagnosed as bi-polar, got off psych meds eventually.
The other person I know stopped being able to function before the Lyme diagnosis. She's now back to functioning after treating for several months.
It's actually the beginning out of the bleakness if you get a Lyme diagnosis.
Posted by droid1226 (Member # 34930) on :
I have almost exact same story. Don't think it's so bleak. You can get better.
Bart is very, if not definitely, present as well with the bottom foot soreness, crushing panic attacks, brain lesions, and positive titer.
You have lyme. With a + 31 on your test results, that is a lyme specific band and definitely along with a 41(and an IND 39, also lyme specific.) And then symptoms on top of all that, any lyme Dr. is going to diagnose and treat you for lyme and co infections.
Onset of symptoms are kind of split for people. Some come on gradual, others remember the date they got sick. Almost overnight.
Follow Burrascano's guidelines.
It seems you have a solid workout regime(that may need to change to anaerobic) so you're already ahead of the game.
Do your homework, stay disciplined...And you'll get better. Just don't wait any longer as it can cause irreversible damage.
Lymenet is a great resource and has gotten many people better.
Posted by surprise (Member # 34987) on :
It doesn't have to look bleak- at least you know.
I'll tell you, if I never found out, I'd for sure have been looking at a diagnosis of early onset Alzheimer's. I had already been given anti- depressants and sleeping pills for internal high anxiety and insomnia from a regular GP.
After proper Lyme and Bart treatment, my memory is much improved, my mind sharper, no more verbal word search while speaking, stammering, etc. (that's what it was like at the end.) No more panic attacks and overwhelming anxiety.
Last bit: when I first started reading your post, I thought: okay, have it all together, then an abrupt panic attack, not that big of a deal,
but then reading further, your symptom list, and you really have been suffering. It reminded me of myself: I could have listed some impressive outside accomplishments, but if I got real honest, I was suffering greatly on the inside, for a long time, with much of the symptoms you wrote.
Lyme and Bartonella positive / awareness blindsided me too. I didn't see it coming in a million years, either (no memory of tick bite.). Although I wasn't at other Doctor's seeking an answer- just blamed everything on outside circumstances, and myself personally.
Get a good Doctor- Lyme Literate---- you are worth it.
Posted by Friday13 (Member # 43697) on :
I used to have a good workout regimen. I was a marathon biker, at 155 lbs, and worked out religiously, both aerobic and strength training. I have gained 25 lbs in the last 8 months as I havent been well enough to do much. But last couple weeks I got back into it.
I am supposed to see a new therapist this week to treat my "panic and Anxiety Disorder" but I am leary.
I am thinking of either going to NY where there is a LLMD from Canada, and is the closest to me, or to British Columbia to see a Naturopath who is Lyme Literate and able to prescribe the ABX..
I don't want to make a mistake here. I have already been toiling around for 8 months now suffering, and time is of the essence.
I will have to look into the Burrascano thing.
(Note - edited out name of city for LLMD, per Lymenet rules - just say Dr with initial of last name, and state - thanks - Robin)
[ 05-04-2014, 10:24 PM: Message edited by: Robin123 ]
Posted by Friday13 (Member # 43697) on :
Thanks Surprise. I just hope I don't get misdiagnosed. I am so confused. I am being told it's panic and anxiety, and then there's the issue that maybe the drugs are causing thee symptoms. All I can do I suppose is go see an LLMD, and see what they and express my concerns.
Thanks everyone
Posted by droid1226 (Member # 34930) on :
Dr. M in NY** got one of my friends better and she was in bad shape.
**edited city of LLMD**
[ 05-04-2014, 08:26 PM: Message edited by: Lymetoo ]
Posted by Friday13 (Member # 43697) on :
Well that's great news.. Then it's settled. I will go see her!
Posted by Friday13 (Member # 43697) on :
There are posters from Canada on Lymenet, so I'm sure they'll be giving you information as well.
Read www.thehumansideoflyme.net It was written by a now-retired Lyme-literate psychiatrist. The Lyme bacteria (Borrelia burgdorferi) can cross the blood-brain barrier and cause psychiatric symptoms.
According to the top LLMD, bands 31, 39 and 83-93 are some indicating Lyme (23 & 34 are the others). You tested positive for several of them and IgM means a current infection. Lyme disease is a clinical diagnosis and the lab results help the LLMD support that diagnosis.
Read the new book written by Dr. H, the top Lyme-literate doctor, entitled, "Why Can't I Get Better?". It is an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posted by hopingandpraying (Member # 9256) on :
The gold standard for Lyme Disease treatment is found in the link for the Burrascano Guidelines: http://www.lymenet.org/BurrGuide200810.pdf Posted by Friday13 (Member # 43697) on :
Do LLMDs follow this method? Tommorrow I need to make a decision to find help.
Posted by Robin123 (Member # 9197) on :
You definitely have Lyme bands. Think of it this way - you could have gotten worse and who knows where that could have led. At least this way, you found out. No question your life will begin to improve again with good treatment.
I have heard similar about others who are marathon runners or mountain bikers, getting exposed to ticks. Especially bikers, since ticks are hanging out at the edge of vegetation.
Tick repellent is needed on everyone at this point. I like essential oils, since they are not pesticidy. I use Orange Guard, from oranges. I put a little in a spray bottle, fill with water and spray on clothing and gear. Use other essential oils for skin - can google for them.
You will need to learn how to protect against ticks. Plenty of info here on Lymenet as well as other sites. Go see www.canlyme.org too.
Also, what you don't realize is that there is a political stand-down on doctors recognizing and treating Lyme disease - conflicts of interest. That's why you have to see Lyme-literate doctors.
For eyes - we're all different when it comes to how we respond to treatments. I am able to stop all Lyme eye symptoms by drinking mangosteen juice, an anti-inflammatory drink that neutralizes the free radicals produced by all the inflammation. The juice can be found in healthfood stores and online. I like the Mango-Xan version, as it is the most tart.
Muscle twitching can be helped by taking magnesium.
The doctor should check your thyroid levels too. If T3 is low, you can take a thyroid supplement which will help boost metabolism again. I found myself feeling present again after I started Armour thyroid.
Posted by TF (Member # 14183) on :
Friday, when it comes to lyme treatment, lyme doctors are all over the map. Many give very low dose antibiotics. (This is safer for the doctor since lyme doctors who follow the Burrascano protocol are often persecuted/hauled up on charges before state medical boards.)
Some treat with just herbs and supplements, some do their own thing (whatever they have come up with on their own.) Some lyme doctors decide what to give the patient based on ART (autonomic response testing).
So, read up a little on that to find out whether or not you believe in it and whether or not you want treated by a doctor who will make medication decisions based on ART.
Since there is no one way that all lyme doctors treat, you have to ask around about a doctor before making the appointment. LymeNet is a good place to ask. Use the "Seeking a Doctor" forum for that.
If you want Burrascano-type treatment (meaning high-dose combinations of antibiotics, plus supplements, etc.) find out if a doctor follows the Burrascano Guidelines before making the appointment.
If you don't find out in advance how the doctor treats, you could end up with treatment that you don't agree with, etc.
Read the Burrascano Guidelines and see the dosages he recommends. Then, once you pick a doctor, you can compare your treatment to Burrascano's Guidelines to see if the doc is following them.
It is imperative that you be an educated patient. Otherwise, you can go to a doctor for years receiving poor lyme treatment and never know it.
Spend a lot of time researching doctors. You can call tomorrow and make appointments with whichever ones you are considering. Generally, the appointment will be months away. Spend that time finding out all you can about that particular doctor. Then, cancel the appointments that you decide you don't want.
Often, people start out with a lesser doctor while they wait to get in with the doctor they really want. I was so sick that I did that.
I only recommend doctors who follow the Burrascano protocol. That is what got me and 5 of my friends well, meaning cured of lyme disease.
And, I had lyme undiagnosed for at least 10 years before I finally found a doctor who thought to test me for lyme disease. Still, I got rid of this disease.
Try to find a doctor who is curing people. This is what I have learned in over 11 years of helping people with lyme disease: many doctors treat lyme disease but on a very FEW know enough to cure of a person of it. Find a doctor who has cured at least 1 person that you know of, preferably 3 people.
If you do not understand the medical controversy surrounding lyme disease, a Boston TV station did a show on it a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the Infectious Diseases Society of America (IDSA) plays in making it difficult for a person to get good lyme treatment.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires at least 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
Most people need only oral antibiotics. Only a few need to go on IV antibiotics.
I and my friends all got rid of lyme and company on orals only. All of us had lyme, babesiosis, and bartonella. Every person in Maryland who has lyme disease has at least these 3.
Because these 3 are so common in patients, they are known as "the big 3." Some lyme doctors automatically treat each patient for all 3 since the tests for these diseases are so unreliable.
The best lyme doctors are always difficult to get in with. Once people learn who they are, they are all lining up at their doors. So, expect to have a wait to see someone good. And it will not be cheap.
If you pick your doctor carefully, you will not have to drop him and find another. When people are first starting out with this disease, they don't know how to pick a good doctor. So, this happens a lot.
Be willing to travel to get good care. And do your homework. We will help you here all we can.
Look at the symptoms of low magnesium that are listed in this article. Having Lyme Disease causes us to be deficient in magnesium, as the Lyme bacteria live in our cells and use it for themselves.
Eat foods high in magnesium: Dark chocolate Almonds, almond butter Beans, kidney beans, baked beans, bean soup, bean burritoes, refried beans.
Take supplemental magnesium, in forms that end in "-ate" such as mag glycinate, mag taurinate, mag citrate. Magnesium oxide and other forms ending in "-ide" are not absorbed as well.
So, who was it who decided to have you tested at Igenex? People don't get tested there unless someone who is knowledgeable strongly suspects Lyme.
Posted by Friday13 (Member # 43697) on :
Thanks guys for the responses. A lot of support here I see.
I guess the burrasco method is the best one. Right now I am considering either a doctor in upstate NY, or a naturopath doctor in Vancouver, canada. I will ask both which method they choose.
I just wish it was easier to decide who to see. If we can't discuss the doctors, how can I know who the best ones are that you mention?
And Carol. It was me who ordered the IGENEX tearing. I have been extremely proactive since I stared having symptoms and have had multiple tests done. I hear the word lyme , saw some of my symptoms fit, knew I was exposed frequently in areas so ordered the tests. My family doctor has been very unhelpful.
[ 05-05-2014, 06:47 AM: Message edited by: Friday13 ]
Posted by TF (Member # 14183) on :
Friday, you can call a doctor's office and ask if they follow the Burrascano protocol, but that can't be your only source to be sure they do.
Doctors often SAY they follow Burrascano, but they really don't. So, I have advised you to seek out other sources such as using "Seeking a Doctor" forum and getting private responses from patients who have seen that doctor. You want to know their treatment and dosages and then compare that to Burrascano.
If you can see a video or hear an interview of the doctor telling how they treat, including meds and dosages, you can note the meds and dosages and then compare to Burrascano's protocol.
If the doctor has written a book on how they treat, get the book and evaluate how they treat. Sometimes there are books that talk about various top lyme doctors and you can read what they say there about your chosen doctor.
Some websites will also give such information. But, be sure it is recent. Sometimes lyme doctors "go bad" and change their treatment style.
You can and should also contact lyme support groups and ask about various doctors there. See Support Groups on the left side of this page.
Others have also given you contact information for other support groups.
So, this is how you do your homework on a doctor and verify how a doctor treats.
This is also how you find out if the doctor has ever cured anyone. You contact current or former patients or others on this forum or other forums who collect patient reports on lyme doctors.
The fact that the doctor has spoken at lyme conferences does NOT mean that he follows the Burrascano protocol. And speaking at an ILADS (International Lyme and Associated Diseases Society) conference is included.
Doctors who speak at ILADS often sound like they follow Burrascano, but if you contact some current or former patients, you find out how they REALLY treat.
And, always consider the source for all of the information on each doctor. Someone just starting out in lyme treatment likely does not know much. So, if they say a doctor follows Burrascano, you don't know if the doctor really does or not. That is why I say to ask for their specific treatment--the meds and dosages the doctor has prescribed for them.
If the person is on just one med at a time most of the time, and if their dosages are lower than what Burrascano says, then the person is not receiving Burrascano type treatment.
Posted by droid1226 (Member # 34930) on :
You can always find the best lyme dr (ILADS, preferrably) you can, and then follow the Burrascano guidelines on your own.
Posted by Friday13 (Member # 43697) on :
Thanks guys.
So is most of LymeNet in agreement that Burrascanos protocol is the treatment of choice for best chance at recovery?
Posted by droid1226 (Member # 34930) on :
People have recovered from this disease countless ways. But I think most would agree that since you probably aren't an extremely old case. You're best shot is a great Lyme Dr. with Dr B's guidelines.
The longer you wait the harder and longer it will take to recover. Some who've tried to tough it out or can't afford it, have just ended up in worse shape
Posted by TF (Member # 14183) on :
Burrascano's lyme treatment guidelines are the only lyme treatment guidelines on the ILADS website. That speaks volumes.
I also believe they are the only guidelines on LymeNet.
What you have to understand is that doctors who are using other treatment methods are not publishing their treatment method.
Burrascano began publishing his (self publishing, if you will) many years ago as he saw a need within the medical community for this knowledge.
Before the Internet, he spent his own money to send copies of his treatment guidelines to doctors all over the country.
Burrascano was the lyme disease pioneer of the world. That's why people came to him from every country in the world for treatment. There is no other doctor with such a reputation regarding lyme disease.
Then, in the early 90s he spoke before the U.S. Congress and told about the conflicts of interest that controlled the IDSA and it's stand on lyme treatment. (In other words, follow the money.)
Because of this testimony, he was brought up on charges before the NY state medical board and was forced to spend hundreds of thousands of dollars in legal and monitor fees just to defend his way of treating lyme disease.
You should be getting the picture by now. Burrascano is not just one doctor among thousands who treat lyme disease. He is the first name in lyme disease.
See what it says at the very beginning of the 2008 edition of the document:
"Welcome to the sixteenth edition of the “Guidelines”. Amazingly, this edition is not only the sixteenth in the series, but as the first edition appeared in 1984, this reflects twenty four years of effort!"
So, in addition to the test of public opinion, this protocol has also stood the test of time.
If you find any other lyme treatment protocol that rises to this stature, you should seriously consider it. But, I know of no such protocol.
I have heard from folks in NYC that had lyme that when Burrascano was practicing, they were always running into people who had gone to him and gotten rid of their lyme disease.
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by Friday13:
So is most of LymeNet in agreement...
. Hah. "Most of LymeNet" rarely agrees about anything.
I suggest you read Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub, to understand what's going on.
This doctor does aggressive antibiotic therapy: Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease by Dr. H. in NY.
Stephen Buhner has an herbal protocol.
The Zhang protocol uses modern Chinese medicine, with either garlic or coptis (berberine).
The Schardt protocol uses extended courses of Diflucan followed by an antibiotic, with reported success.
There are homeopathic protocols. There is a protocol using LED light therapy, also known as low level laser therapy.
Some people have found that treating parasites relieves their symptoms. Some people have found that treating leaky gut syndrome helps.
Systemic enzyme therapy reduces the inflammation and pain associated with Lyme Disease. Pharmaceutical quality fish oil and other essential oils help the body's cells to function better, relieving symptoms.
However, this disease does cause nutritional deficiences that trigger many symptoms, and THAT you can work on yourself while you're looking for a doctor. Magnesium Vitamin D B vitamins trace minerals fish oil
There are a number of supplements that help the liver to detoxify the neurotoxins left behind by the dead Lyme bacteria. magnesium fish oil alpha lipoic acid acetyl-l carnitine undenatured whey CoEnzyme Q10
PLEASE look into magnesium deficiency, as it is causing many of your symptoms.
Posted by Friday13 (Member # 43697) on :
So my next question... If Burrascano has the guideline all set and it is a good treatment plan, then who cares about the level of expertise of the doctor, no? A monkey could just follow the protocol and prescribe the appropriate drugs with appropriate dosages. I have not read the guidelines yet by the way. Just being Devils advocate.
[ 05-05-2014, 08:06 PM: Message edited by: Friday13 ]
Posted by jb151 (Member # 43170) on :
Because Drs are scared to treat based on this guideline, if they do and are "found out" then they could lose their license among other things.
Hence, not being allowed to post Dr's names or treatment protocols.
My previous Dr was not willing to treat based on these, i tried to get her to but she said she would lose her license. I have since moved on to herbal stuff. If i had a Dr. to start with that would have treated this way would i be better now?
Not sure.
The entire flip side to all of this Lyme stuff is no two people are the same. Their immune system is not the same and the co-infections they have are not the same. So there is not a "protocol" that will work for everyone. Not to mention that, in my opinion, blood tests are far from accurate.
So if blood tests are indeed not accurate, then how the hell do people figure out what they have in order to treat it correctly?
Not sure.
Like i said above i have gone another route as of now. If what i am doing now doesn't work then i might seek out a B guidelines Dr. at that point.
I can feel your pain on not knowing what to do.
I wish there was a " do this and get better" type of treatment, as i would be the first in line for that.
For what works for one person may or may not work for the next.
Frustrating to say the least.
Posted by jb151 (Member # 43170) on :
For those posting in this thread..............
Who would you say is the top Bur.... treatment Dr. in the US?
I know you cant post names, but first letter and city?
If what i am doing now doesn't work then i will need a backup plan.
If you could go to anyone who would it be?
Posted by TF (Member # 14183) on :
You HAVEN'T read the Guidelines; that is obvious. It is time you get your education on this complex disease.
And, when you find one of these monkeys, start telling everyone where he or she is located so everyone can just go there and get healed.
In my experience, it takes about 10 years of treating lyme patients for a doctor to be able to handle difficult cases and people who have had lyme for years.
See this post on why a person should try to get to a top notch lyme doctor:
And start reading.
Posted by jb151 (Member # 43170) on :
TF,
Was that directed at me?
Education?
Monkeys?
So since you are the expert, then what Dr would you go to?
Unreal.
Posted by jb151 (Member # 43170) on :
On second thought.
Keep your great wisdom to yourself.
DO NOT talk down to me TF.
Attack me like that for no reason?
I am educated on all of this since i had to educate myself over the past vast number of years.
Unreal again.
Done with this thread.
Posted by TF (Member # 14183) on :
jn151: No. I was responding to Friday's post (this is Friday's thread) which said we just need to find a monkey who follows Burrascano and we will all be fine.
Your post didn't show up on the board when I was writing to him. Look at the times of our posts.
I found a doctor who cured me of lyme disease. That was 9 years ago now, and I had had lyme at least 12 years by the time I got to him. I had gone to 2 "lyme doctors" prior to him.
He followed the Burrascano protocol. That's why I believe in it. It got me and 5 of my friends CURED of lyme disease.
I have been helping people on LymeNet find good doctors for many years. There is a learning curve. It helps to have somebody who has gotten through it to help you.
Write to me privately and I will tell you who the top doctors are. Just click on the envelope icon above my post.
Unreal.
Posted by jb151 (Member # 43170) on :
Tf,
OK i reread the thread i didn't see the "monkey" reference earlier.
I thought you were implying that my current Dr was a monkey and that when a "monkey" cures me to tell everyone about it.
Also, i took that as a direct reply to me that i have not read and do not understand the B protocol.
My fault, not having a good few days here lately.
I apologize.
I will send you a PM.
J
Again i apologize on all that, didnt see the times of reply and took it as it was meant for me.
Sorry again.
J
Posted by Judie (Member # 38323) on :
"A monkey could just follow the protocol and prescribe the appropriate drugs with appropriate dosages. I have read the guidelines yet by the way. Just being Devils advocate."
You could have more than one infection. If you do, then the treatment plan can change and you need a doctor who has experience with all the curve balls this illness can throw at you.
For example, I also tested positive for h. pylori. My doctor focused on treating that first so I could even handle all the antibiotics I needed to take for Lyme.
Sorry about the monkey reference guys. Was totally just talking hypothetically and basically asking a questions by means of playing devils advocate. Was certainly not directed at you or anyone TF..SO SORRY!!. Was playing devils advocate for the sake of discussion on the Burrascano protocol.
Things sometimes don't come through "typing" well..
I was picking brains to try and figure out what kind of doctor I need. And I thought perhaps the Bur manual said EXACTLY what to do. Which it doesnt as I sit here now reading it.
Anyhow. Sorry it was taken the wrong way. If you knew me, you would know I would NEVER intentionally insult anyone. I hate conflict..hahaha
And that was a MISPRINT in my post way above in regards to the monkey... It was intended to say I HAVE NOT read the manual. damn iphone. I was pointing that out to illustrate I know nothing. But instead it came out as if I had read it.. ARGH! Sorry guys
Posted by Friday13 (Member # 43697) on :
repeat
Posted by TF (Member # 14183) on :
jb151: Thanks for the apology. No offense taken. I will get back to you regarding your private message.
Posted by lyme in Putnam (Member # 11561) on :
This disease is nothing to play with. Causes a lot of medical and psychological symptoms that can ruin you.
Posted by lyme in Putnam (Member # 11561) on :
Also have hormones checked.
Posted by Friday13 (Member # 43697) on :
Certainly not looking to play with the disease. I am desperately looking and trying to figure out my best option or a llmd. So many options and suggestions I have got. Hard to pick the right choice.
Posted by Judie (Member # 38323) on :
I found these links helpful when I was picking a treatment plan. I also did consults with 3 LLMDs before I chose the one whose treatment plan worked best for me.
Who might be the best option for one person may not be the best option for you. It's very individual.
I am constantly second guessing myself of whether this could be lyme or not. Through process of elimination, I have eliminated all other physical things I can think of. Thyroid tests, tons of bloodwork for various conditions, seen the top MS doctor in the province, etc.
So in my mind right now this leaves me with either Lyme it an anxiety disorder combined with bad side effects to the klonopin I am on and the SSRIs that I was on and off.
My igenex testing came back with one plus on band 31 for IgM and 3 bands (including 31) on IgG. it's not definitive. It's not positive or negative.
Over the last 8 months I have seen so many doctors and specialists and physchiatrists and therapists.
It's crazy considering I was perfectly healthy and fit. And out of nowhere at age 40 when everything in my life was great I suffer a panic attack and then develop and anxiety disorder and depression as a truly of all the other symptoms
such as vision problems, anxiety, tingling and numbness, muscle twitches all over, depersonalization, feeling detached and almost surreal, headaches and more.
Doctor keeps saying it's all in my mind. All anxiety. From someone who has never had a psychiatric problem in my life, in the last 8 months I have been diagnosed bipolar, PTSD, panic Disorder, depression.
It's crazy. I have suicidal thoughts also almost everyday as a simply do not want to deal with any of this anymore. But I keep fighting for my wife and 2 young kids. (10 & 7)
The reason I keep having doubts about lyme is that I have no joint or muscle pains etc. I watched under our skin. I also started reading Dr Hs book "why I can't better", and a lot of the symptoms described I dont have.
So that leaves me thinking maybe it isn't under my skin, but indeed in my head. But my psychiatrist told me it would be rare and unusual for a 40 year old in my position in life to suddenly develop these symptoms. I just don't know.
I am going to see dr M in NY.. I hope to get some answers.
..............................................
Breaking up your post for easier reading for many here -
[ 05-23-2014, 06:36 PM: Message edited by: Robin123 ]
Posted by surprise (Member # 34987) on :
You mentioned Bartonella infection in your first post:
The Bartonella Checklist Increasing Suspicion of This Emerging Stealth Infection
1. Insomnia [If profound fatigue this might not apply].
2. Current anxiety that was not present at age ten.
3. Current anxiety or depression not present at twenty years old.
4. Knee-jerk emotional responses worse than past decades and worsening.
5. Unusual discomfort on the soles of your feet
6. A temperature under 98.3. A temperature under 99.0 if Lyme disease or Babesia is present
7. Puffy tissue on insole or any part of ankles
8. Depression
9. Depression that is not fully controlled. [Improvement of mood is not successful in depression treatment].
10. Gingivitis or bleeding during flossing
11. Anxiety is poorly controlled with average dosing
12. Depression is poorly controlled by reasonable medication trials
13. Sleep medicines work poorly at routine dosing
14. Rage worse with time
15. Irritability worse with time
16. IL-6 is very low
17. IL-1B is very low
18. TNF-a is in lower 10% of normal range
19. Any skin markings or growths greater than most people
20. Blood vessels or color on skin greater than most people
21. Impatience > in personality when compared to ten years ago. [in a child, any can be any irritability]
22. Cursing or hostile speech that is worse over time.
23. One or more medical problems with unclear cause(s) and “idiopathic.”
24. Red papules of any size.
25. Skin tags including ones removed by dermatologist or shaved off.
26. Unusual blood vessels of any kind including inside organs such as bladder or intestinal walls
27. Any skin finding in excess of 95% of most humans
28. Skin findings showing increased blood vessels of any size
29. Skin findings showing increased tissue formation that is increased over the flatness of surface skin.
30. Skin showing blood vessels that are too large or too many forthe location of the blood vessels, e.g., surface thigh and calf skin with very thick surface blood vessels. Or legs, upper arms or shoulders have explosions of many fine blood vessels.
31. Increased addictions that are more resistant to recovery than average.
32. Increased impulsivity in contrast to past years or past decades.
33. Burning skin sensations [this may have many causes].
34. Itching without a clear cause and which is hard to control and remove
35. Skin erosion without a clear cause such as a fire or chemical burn.
36. Minor cuts or scratches which heal slowly.
37. After a surgery, you heal very slowly.
38. You have two tick or flea infections with two positive tick or flea borne viruses, bacteria or protozoa. [Bartonella has >30 published species in public genetic databases and has more vectors than possibly any infection in the world. Therefore, the presence of other infections such as tick borne viruses, bacteria or protozoa, should raise suspicion.
39. Exposure to cats and dogs in excess of very incidental rare contact.
40. The patient’s mother is suspicious for Bartonella based on newer direct and indirect testing.
41. A sibling, father, spouse of child with any tick or flea-borne infection who shared a residence or vacation with proximity to brush.
42. Exposure to outdoor environments with brush, wild grasses, wild streams, golf courses or woods.
43. Outdoor expose in locations such as brush, wild grasses, wild streams or woods which happened without the use of DEET orwithout very high off- gassing essential oils on exposed skin areas.
44. The outdoor exposures such as brush, wild grasses, wild streams or woods which occurred without permethrin on shoes, socks and all clothing.
45. Clear exposure to lice, fleas or ticks. [Bartonella is carried by a huge number of carriers, but for now, the % that carry Bartonella is not known. Further, the capacity to detect all new species in the vectors or in humans infected, does not exist or is not routinely available in direct testing of all human infectious Bartonella organisms in both large or specialty labs].
46. Stretch marks in eccentric locations, e.g., arms, upper side under armpit, around armpit or on the back.
47. Stretch marks filled with red, pink, purple or dark blue color.
Also, this about Bartonella and Lyme from Burrascano page 24:
'CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme.
There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis'. (goes on further)
Posted by KH111 (Member # 25829) on :
Some people never get joint pain. My husband and I only had neuro symptoms, headaches, brain fog, and neck pain. This is the lyme. You other symptoms are the bartonella.
You need to make an appt with a good LLMD, you are still in the earlish stage, don't waste time.
Good luck.
Posted by Friday13 (Member # 43697) on :
I definitely have some of those Bart symptoms. No question. The increased anxiety for sure!!! I had mlments of anxiety before but nothing like now. But I don't see symptoms I have like depersonalization or panic attacks listed.
I do get this weird thing lately that i don't understand. In the hot shower or bath sometimes my inner thigh gets all red and very itchy. It's strange.
As for red nodules of any size, I have a small red pump on my inner right thigh. I have stretch marks but pretty sure they are from when I lost alotnof weight 20 years ago. Haven't kept track if new ones started.
As for exposure. Definitely. I mountain bike 5 days per week. At least I used to. In last 8 months since this started I have gained 30 pounds and have given up my workout regimen.
I also live beside woods and live lakefront on a rural area. So I am certainly in an area that I coul be exposed. Especially since I am always outdoors or in the forest.
I guess the medical community and my family are Malik me second guess everything. I'm basically being called paranoid for thinking it's anything but a mental disorder.
Even my father is against the whole lyme issue. He said "you saw the top neurologist in the province and were told that it's not lyme, and that I should be highly suspicious of any labs or doctors charging thousands of dollars for medication that costs pennies. " basically calling igenex and lab docs scam artists.
Just so much flooding through my head. And the thing is. If it's indeed just in my head, I need to focus on that and work on it. But from day one I have thought it to be something else. Hence why all the tests and docs I have seen.
My family doctor has basically washed her hands of me as well. She refused to order the band 31 epitope confirmation test for me from Igenex. Basically saying enough is enough.
Anyways. I have an an appointment with a LLND her in canada, but she can't prescribe ABXs. And in process of setting up appt with Dr M in NY.
Just hope I am not making a mistake as this is going to cost an fortune and I have already spent thousands in therapy etc.
I guess I am just so afraid of being diagnosed with lyme incorrectly and paying all that money out, when I should have been checked into a mental health facility instead.
Sorry if I'm all over the place guys. Been scatter brained for many months.
................................................
Breaking up the post for easier reading for many here -
[ 05-23-2014, 06:40 PM: Message edited by: Robin123 ]
Posted by lostlyme (Member # 38561) on :
Well I guess it's your choice to accept the fact that lyme disease was misdiagnosed for another illness.
Myself have been to over 100 doctors and specialist and was told I was old , crazy ,Parkinson's, etc.
At 1 point I was told I had epilepsy , did the testing and doctor wanted me to sign something so they can take away my drivers license.
I told her you have no idea or a clue as to what I'm going through.
So I just got out of the office , follow what your body tells you.
I'm glad I did . Now all is better from lyme and bartonelia
Posted by Friday13 (Member # 43697) on :
You are all better? These are the stories I need to hear. Because it seems I keep reason stories of how people are being treated for years without recovery.
I watched a YouTube video yesterday that said very few people actually recover, which I don't know is true or not. These are all questions I will ask Dr M when we meet.
I do thank everyone in this post for your feedback and support. Such great response.
Posted by lostlyme (Member # 38561) on :
Myself. My LLMD told me You will be lucky to get 50% or 60% of your life back whether it would be neurological , cognitive , Musculoskeletal System etc .
Well I exceeded his and my expectations close to 100%.
Well maybe the reason people don't get better is possibly using antibiotics that are not supposed to be combined reducing its potency .
Using probiotic to close to antibiotics or magnesium .
And the LLMD missing another confection.
Important to keep a journal of symptoms and meds.
Then you know it's time to move onto another treatment plan.
Also myself I never backed down off of anything I took.
It was no worse than not being treated. I have been ridiculed by doctors , emergency room visits for heart problems , not being able to breathe ,etc.
Once I started treatment I told myself no more hospital trips. Nothing mattered to me .
I did not hinder my treatment . Some people say it was like a deathwish .
I saw it as survival. Everyday was another experience whether good or bad.
Prior to being treated and diagnosed with lyme and bartonelia .
I had meningitis in 2007 and a 50/50 chance to live . And for me it hurt like hell . And at same time I felt my body shutting down .
It was actually very peaceful for myself.
This is my experience of dying. So I looked back on my death bed and my decision to proceed no matter what treatment I was doing.
Everyone is different so please don't do what I did on being treated.
Posted by Friday13 (Member # 43697) on :
You are a lot stronger than me. I am already a complete wreck. I would have never thought of leaving this earth but now I think about Ending my suffering all the time. It's surreal to even have these thoughts given where I was into life 8 months ago. So happy. Secure. Everything just great.
If I have learnt one thing about this situation it is how weak I truly am.
I cry off and on all day. For a grown man that never cues, I have shed more tears than I have in my lifetime.
I have destroyed my wife's life as well. She is worried she will lose me every day. We are both so scared. I think the scarier part is truly not knowing what happened to me. We have no answers. Only guesses.
Posted by Judie (Member # 38323) on :
Under Our Skin shows some of the sickest individuals. Not everyone has those symptoms.
"But I don't see symptoms I have like depersonalization or panic attacks listed. "
Not everyone has ALL the symptoms for Lyme or the coinfections. It's common to only have a few of them.
"So that leaves me thinking maybe it isn't under my skin, but indeed in my head."
I remember reading awhile back that within 48 hours of infection spirochetes from Lyme are already in the brain. They just stay there doing damage. That's why people with Lyme often have white matter in their brain.
My friend's only symptom of Lyme is it made her bi-polar. When her psych meds stopped working, I urged her to check into Lyme.
It took her OVER A YEAR to finally pursue Lyme after I mentioned it.
She has Lyme, babesia and bartonella.
"We have no answers. Only guesses."
You do have answers. In China they treat people with only 1 positive Lyme band. Canada and the US have horrible interpretation standards for the tests. They are totally arbitrary and are made so insurance companies don't have to pay for Lyme treatment.
You have Lyme and probably other co-infections. It may take you a year to accept it like my friend did.
It may be scary, but it's also good that you got some bands that were positive. There's your proof.
Amy Tan (the author) has neurological Lyme. She had a lot of white matter lesions in her brain. You can read what she went through here:
Please don't rule out for emotional perimenopause. I jVe Lyme, Bart and menopause and daily hold on . It's tough. Hoping to learn to let it go, but not thinking clearly every minute is hard. I loved my life, son, husbsnd, doing ondamed treatment and dr. H.
Something's gotta give. Lyme gave me many miscellaneous things, (hyponatremia, vtac...). depersonalization, anxiety, (already had ocd but not like this) you'll be ok, the worst is the up and down you think doesn't end. It has to sometime. Be well.
[ 05-23-2014, 06:42 PM: Message edited by: Robin123 ]
Posted by Friday13 (Member # 43697) on :
Thanks guys. I guess I just have to accept I have lyme. It makes the most sense given the amount of suffering infinite no relief. None of it makes sense and I there is no other explanation.
I often wonder how bad this is gonna get. If I can't work we will lose everything. Not to mention the jnsane bills I am about to have to pay for treatment.
But from anyone's experience, will treatment provide me the much needed relief from these symptoms. It's all in my brain. I feel as though I am going crazy. I want my life back so badly.
I wish I knew what to expect.
Will keep you all updated as I learn more and get my appointment set.
Posted by Judie (Member # 38323) on :
You will heal. Get to the right doctor.
Me and another friend of mine both had great responses to mental problems after we started antibiotics.
It was faster and more effective than any anti-depressants either of us had been on in the past.
It's amazing how much these infections can effect emotions.
Lyme is awful, but at least there's treatment for it even if it isn't perfect.
The leader of my Lyme group took a 2nd mortgage on her house to pay for Lyme treatment. This was 10 years ago. She was in a wheel chair and couldn't work at all at the time.
She still has her house and works full time now and had more energy than anyone I know. She was able to get out of the wheel chair after a year.
She's a single mom and is able to raise two kids.
You CAN get through this.
I'd much rather have Lyme than cancer. My friend just got diagnosed with stage 4 cancer in several parts of her body. This is after battling breast cancer a few years ago.
She's only in her 30s.
Posted by lostlyme (Member # 38561) on :
You nor anyone inflicted of this disease ruined the life we had.
It is the guidelines that ruined lives , the doctors who listen to the IDSA.
I Would tell my LLMD I miss my job, my life , my enjoyment.
And he would tell me that is who you were , this is you are now.
I like everyone else who was afraid of losing everything or lost what worked so hard for and especially pride.
Then 1 day I realized it's only stuff , and I'm going to keep my pride.
That took a long time to accept
Treatment is like going forward 1 step then falling back 10 steps.
Appreciate all the little things especially having 10 minutes of sleep , or few minutes of not having pain or the ringing ears is not loud or countless other symptoms have slightly diminished
Don't get discouraged when new symptoms appear.
Make every effort to keep positive attitude .
Then one day it's like someone pushed a button and it's the start of feeling normal.
It is a slow and tedious process.
Posted by Friday13 (Member # 43697) on :
Thank you so much. But here's on thjg I notice around here both on the forum and through PM. I keep hearing the words "find the right doctor". Why not simply tell me who that is? It's a maze trying to figure it out.
I'm going to see doctor M in NY. I have no idea if she's the right doctor. I'm shooting blind and this is not only costing financially as a Canadian I have zero coverage in USA, but the emotional and health cost is far greater. I don't have time to go from doctor to doctor.
So who's the "right" doctor?
[ 05-23-2014, 06:43 PM: Message edited by: Robin123 ]
Posted by Judie (Member # 38323) on :
You have to find the right doctor for you.
Each doctor has a slightly different approach. Some are more conventional, some are more alternative.
As for price, there a couple ways to approach this.
A lot of people just start with 1 doctor and see them until their treatments doesn't agree with them, then move on to another doctor (could be the first month, could be a few years down the road).
I saw 4 doctors in the first couple months I was ill and compared treatment plans until I found the right match. Even one very well recommended doctor didn't work for me (I was allergic to 6 things she gave me, her approach just didn't work for my body).
I'd post in the seeking doctors forum and try to find a support group to attend if there are any in your area. See if you can get more details from former patients. Also contact ILADS.
In the US very few Lyme doctors actually take insurance, so we've all been bit by the financial bug. Even some meds aren't covered.
It's seriously similar to what happened at the beginning of AIDs/HIV. Doctors and insurance just don't know what to do and there are very few experts.
Posted by lostlyme (Member # 38561) on :
It took me 3 LLMD doctors first 1 I thought was great. She is and was high up on the board. Not going to bash her here.
She took my money ,listened to me and what I had to say. Took some blood work , then when test came back negative.
She never spoke to me on what else to pursue ,unless I paid for another visit.
Then the following year I had another LLMD and saw my blood work ,took some more blood.
Then some showed a positive and others were used as a marker
Then recommend I go on long term iv. But that would have been another few months because he had to recommend me to another llmd .
But that same weekI also had another appointment with another LLMD.
I told him about other LLMD and iv , and went over the pros and cons of iv versus oral antibiotics and natural supplements.
He told me make up your mind now call that other LLMD and get whatever results he had . I want them in my office in a few minutes.
Well I chose him because of his honesty , his compassion he had with me . He was strict ,if you don't do what I say you will be wasting your time ,my time as a doctor and another patients time who wants to get better.
I was fortunate to have him , I am grateful for what he had done for me , he was my doctor and became my friend.
I was a person ,a human , spoke to me. called me by my name knew everything on my chart . he devoted his time towards me .
I felt like I was his only patient .
As far as doctors go find a support group close to home.
Meet people talk to them . That is the best way to find a doctor.
Share your story with them listen to them , it will be then you know that's the doctor I want
Posted by Friday13 (Member # 43697) on :
Well the doctor I am trying to get into (Dr M), is proving to be hard to get a hold of. Phone calls and emails have yielded nothing thus far. Will keep trying..
On another note.....how's this for a sign.....
5 minutes ago I just pulled a tick out of my hair after going for a walk with my daughter.Not sure how he got there, but just made it painfully obvious how easy it would be to get infected
Posted by Carol in PA (Member # 5338) on :
"5 minutes ago I just pulled a tick out of my hair after going for a walk with my daughter."
Birds carry ticks, and so there are ticks in their nests. White footed deer mice carry ticks, and they live in trees, among other places.
This means that ticks may land on you from above.
Posted by Judie (Member # 38323) on :
Oh dear. Did you save the tick? You can get it tested for diseases through Igenex.
However, testing is not perfect. I know someone where the tick tested negative, but the person tested positive.
It might be worth it to send the tick in though. If it's positive for any tick illnesses, you will then have more information to work from.
Posted by Friday13 (Member # 43697) on :
I Didn't keep the tick. Testing him woildnt do anything as he didn't bite me. Was just in my hair. I pulled him out and I let him walk all around my hand for a while So I could examine him and make sure it was a tick and it definitely was.
I have no idea how he got in my hair. We do love in a rural area but I always assumed if I had lyme it must be from mountain biking. Turns out that may not be the case. This is right from my backyard.
Closest support group to me is about an hour away and turns our there are others from my little town there.
I should have kept the tick just to show my wife. But she will believe me. I tried to take a photo of him with my iphone but wouldn't stay still and zoom couldn't focus in.
Put property is packed with birds and bird nests and feeders etc.
Anyways. That's the first tick I have ever seen. Well that may not be true. I just may not have paid any mind to it and just called it a bug before. But now that I know what it is I knew exactly what i pulled out of my hair. Doesn't mean it was positive for bacteria though. But never know.
[ 05-23-2014, 06:44 PM: Message edited by: Robin123 ]
Posted by Judie (Member # 38323) on :
Get rid of the bird feeders ASAP. The bird seed also attracts mice and squirrels, all can have ticks.
A lot of people don't remember a tick bite.
Ticks numb your skin before biting you so you don't feel it.
Posted by Friday13 (Member # 43697) on :
Update:
Appointment made for June 24 with Dr. M in NY. Apparently I got very lucky as it's usually a 3-4 month wait.
I hope to end this nightmare soon. If it's Lyme, then let's get it treated. If it's not, then back to the drawing board I suppose but I am out of medical options I think.
We have even "fired" our family doctor over this who refused to order a confirmation test on my Igenex results, as she simply said,
"there is no Lyme in Canada!"...
She pointed to her diploma from Med School, and said
"Sometimes you need to trust your physician"...
To which my wife replied
"And sometimes you should trust your patients when we tell you that Doctors are uneducated in Lyme disease"
This same doctor told me that any lab that I would have to send away and pay for must be a scam (Igenex), and that LLMD from the US are "Charlottans"
Also, in 2 weeks I also have an appointment with a LLND here in Ontario but she is unable to prescribe anitbiotics. She ordered the confirmation epitope tests for me, so should have them by then.
Lastly, I for the last 2 weeks I have been following Buhner's protocol. I figure it can't hurt whether I have Lyme or Not.. I will continue to do it in the hopes up bumping up my immune system.
Any other advice on natural things I can take?
Also, In Buhners Book, he mentions a stephania root tincture for eye problems (a bad one for me).. but I couldn't find how to make this tincture. I got all these wood chips of stephania and put in in a mason jar filled with Vodka.. no idea if that was right, but says to wait 6 weeks? I don't want to wait.. Anyone else done this?
Keep fighting!
Posted by delljen (Member # 25090) on :
You are getting wonderful advice on this thread. Only things I might add is keep an open mind about having lyme and ANY/ALL of the co-infections.
Find a LLMD you trust and cover all the co-infections and corresponding treatments with him/her. That way even if you have negative test results(which often happens with lyme and co's) you will get appropriate treatment based on your symptoms.
Believe your symptoms, believe what your body is telling you, believe your LLMD and you will get better.
[ 05-23-2014, 06:45 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
You can tell your ex-family doctor to take a look at www.canlyme.com
Also there's a bill going through in Canada now to get long-term treatment allowed.
Re your question about eye problems, what stopped all my Lyme eye problems has been to drink mangosteen juice, an anti-inflammatory juice you can find in healthfood stores and online. I like the Mango-Xan version as it's the most tart.
You are normal to have the thoughts and feelings you have. This is a lot of new info and it takes time to absorb. Just know that as you treat, you will start to feel better.
Posted by Friday13 (Member # 43697) on :
Thanks guys. We actually did refer the doctor to canlyme but she didn't care.
About this juice. I take several supplements that are anti-inflammatory. If it's that property that helps the eyes I'm not sure it will work for me considering how many things I take already for inflammation. Curcumin being the best one.
But with that said, I'll try it. Lol. I'll try anything right now. I suffer from blurry, hazy vision. Feels like there's a film over my eyes all the time. I have focus problems. Burning as well. Constant reminder that I am ill.
[ 05-24-2014, 12:28 AM: Message edited by: Robin123 ]
Posted by TF (Member # 14183) on :
Congratulations on your appointment with a lyme doc in June!
Be sure to make a very complete list of symptoms to take to the doctor. Use pages 9-10 of Burrascano Guidelines to help you.
And, take copies of all lyme tests and other recent blood tests, other tests. This will help the doctor with the diagnosis.
I expect you will be very happy when you come out of this appointment. Most people feel like they died and went to heaven when they finally see a doctor who understands this disease, believes everything the patient says, and even brings up or finds additional lyme symptoms that the patient has.
I wish you all the best. And, I think you did a great job with the ex-family doctor. Good for you! Always try to educate. Some will hear you and some won't.
Posted by Robin123 (Member # 9197) on :
I take various anti-inflams too and I notice that each one does something different. Like tutmeric eases joint and muscle pain. And yes, I have done them separately to see what they affect.
The mangosteen juice is the only anti-inflam supplement that I take that affects my eyes and stops the eye symptoms. It also emptied out my sinuses when I first started, and regularizes the intestines.
Now is a great time to learn about all this so you will be better able to follow what's going on in the appt. Treatment occurs in three areas: kill/deter the organisms, detox, and fortify the body.
Posted by applewine (Member # 26220) on :
First, double check your symptoms and try to eliminate you are not sure about.
Second, are these panic attacks caused by any events?
Third, try to find other explanations for your symptoms. For example muscle trigger points can cause many strange symptoms like balance problems, vision, pain etc. and few know about them. Maybe not any of your symptoms, but that is a good example.
Fourth, were you taking that medication before or after your symptoms? Why are you taking it?
The lyme tests and treatments are very up in the air. I have no idea how to prove infection or if infection is curable or easy and in what case.
You may want to avoid experimenting on yourself and keep an eye on Lyme disease developments over the next year. There should be some new antigen tests that may help.
Be careful jumping into treatment thinking you have nothing to lose. Some antibiotics are safer than others and many are normally given alone or short term, only a few are commonly given long term for other conditions. Avoid Bactrim as it has a high incidence of adverse effects. Avoid IV for now. Avoid any antibiotic that causes tendon damage. Avoid anything like rifampin which is not common.
Consider waiting for better tests and a cure.
I tried lyme treatment for my muscle pain after a doctor gave me an igenx test. I was skeptical, but went to the Lyme disease referral and decided to try treatment.
I was prescribed bactrim, rifampin, azithromycin and minocycline.
A few weeks in I noticed red spots on my skin and later got paresthesias all over my body like cold water, burning and stinging.
I took the antibiotics for 6 months, except the bactrim.
4 years later I still have the neurological problem and no answers. It didn't cure any of my other symptoms.
Posted by Phoiph (Member # 41238) on :
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...
Posted by Friday13 (Member # 43697) on :
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.
Posted by Friday13 (Member # 43697) on :
**** ANOTHER UPDATE
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.
Posted by rowingmom (Member # 41213) on :
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.
[ 05-27-2014, 11:57 AM: Message edited by: rowingmom ]
Posted by lymeinhell (Member # 4622) on :
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.
Posted by derk diggler (Member # 31903) on :
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
Posted by lostlyme (Member # 38561) on :
I never used to get panic attacks till way into having lyme and bartonelia.
Then one day the panic set in anything would set it off.
This went on for many months till one day I realized I never had them prior to being sick.
So what I did was told myself it's the disease get over it.
That took a few weeks to finally accept it and stopped it.
Then what I used to do was try to force out the panic attacks, and when they came on .
I faced them head on , nothing was going to deter me for getting better.
Posted by derk diggler (Member # 31903) on :
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
Posted by Friday13 (Member # 43697) on :
Thanks guys..
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!
Posted by surprise (Member # 34987) on :
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--
Posted by bigstan (Member # 11699) on :
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.
Posted by rowingmom (Member # 41213) on :
quote:Originally posted by Friday13: I need to breathe through it, find my Cadence
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.
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.
Posted by Friday13 (Member # 43697) on :
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.
Posted by Carol in PA (Member # 5338) on :
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.
Posted by rowingmom (Member # 41213) on :
Dr Myhill's site IS great. She has many good articles; I like this one on the gut:
Nutrient and mineral deficiencies caused by parasitic infection is the basis for Buhner's nutritional recommendations.
Posted by Friday13 (Member # 43697) on :
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
Posted by lostlyme (Member # 38561) on :
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.
Posted by Friday13 (Member # 43697) on :
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?
Posted by Carol in PA (Member # 5338) on :
"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.
Posted by docluddite (Member # 36032) on :
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...
Posted by Carol in PA (Member # 5338) on :
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.
Posted by Friday13 (Member # 43697) on :
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.
Posted by Friday13 (Member # 43697) on :
I have been doing Buhner's protocol for almost a month now. I have had no herx reactions. Does this mean I do not have Lyme?
I even took a 10 day course of Amoxicillin I had here, and nada.
Posted by GretaM (Member # 40917) on :
Have you been doing the FULL Buhner protocol, at the high end of the doses he recommends?
Maybe double check to be sure?
Also, a month is a drop in the bucket.
If you're doing herbals, plan to commit for years.
It's slower than abx.
Posted by Friday13 (Member # 43697) on :
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.
Posted by lymeinhell (Member # 4622) on :
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.
Posted by docluddite (Member # 36032) on :
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.
Posted by Friday13 (Member # 43697) on :
Thanks guys.
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
Posted by Judie (Member # 38323) on :
"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.
Posted by Friday13 (Member # 43697) on :
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.
Posted by GretaM (Member # 40917) on :
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.
Posted by Friday13 (Member # 43697) on :
Thanks Greta.
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.
Posted by Judie (Member # 38323) on :
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.
Posted by Friday13 (Member # 43697) on :
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.
Posted by Judie (Member # 38323) on :
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.
Posted by Phoiph (Member # 41238) on :
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...
Posted by Friday13 (Member # 43697) on :
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.
Posted by Judie (Member # 38323) on :
(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.
Posted by Friday13 (Member # 43697) on :
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.
Posted by docluddite (Member # 36032) on :
Did you have any of the lab work done?
Posted by Friday13 (Member # 43697) on :
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. Posted by docluddite (Member # 36032) on :
Specifically, what was 25 OH D level?
Posted by GretaM (Member # 40917) on :
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
Posted by Friday13 (Member # 43697) on :
Doc the 25 h d level was 88
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.
Posted by lostlyme (Member # 38561) on :
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 ]
Posted by docluddite (Member # 36032) on :
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?
Posted by Friday13 (Member # 43697) on :
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.
Posted by patches10025 (Member # 20983) on :
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.
Posted by Friday13 (Member # 43697) on :
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)
Posted by Judie (Member # 38323) on :
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.
Posted by TF (Member # 14183) on :
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.
Posted by Friday13 (Member # 43697) on :
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.
Posted by TF (Member # 14183) on :
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.
Posted by Judie (Member # 38323) on :
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.
Posted by Friday13 (Member # 43697) on :
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.
Posted by TF (Member # 14183) on :
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.
Posted by Judie (Member # 38323) on :
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.
Posted by Friday13 (Member # 43697) on :
Ya. I'm trying to remain upbeat. Not succeeding but trying. Lol. Are you still on the ABX? How long?
Posted by Judie (Member # 38323) on :
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).
Posted by Friday13 (Member # 43697) on :
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.
Posted by Judie (Member # 38323) on :
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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