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» LymeNet Flash » Questions and Discussion » Medical Questions » Looking for Advice Please (Page 1)

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Author Topic: Looking for Advice Please
Friday13
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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

.................................................

Breaking up the text for easier reading for many here -

[ 05-30-2014, 09:31 AM: Message edited by: Friday13 ]

Posts: 53 | From Ontario, Canada | Registered: May 2014  |  IP: Logged | Report this post to a Moderator
Pocono Lyme
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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.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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Friday13
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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.
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Lymetoo
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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.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Friday13
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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 ]

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TF
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Take a look at this link. A person from Toronto looking for a lyme doctor:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/24417

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"

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

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Judie
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Here you go:

The psychological effects of Lyme disease
http://www.igenex.com/psychological_effects.htm

"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.

................................................

Breaking up the text for easier reading for many here -

[ 05-04-2014, 09:33 PM: Message edited by: Robin123 ]

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Friday13
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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.
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Judie
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"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.

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droid1226
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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.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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surprise
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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.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Friday13
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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 ]

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Friday13
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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

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droid1226
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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 ]

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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Friday13
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Well that's great news.. Then it's settled. I will go see her!
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Friday13
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And is this the Guidelines you are referring to?
http://www.lymenet.org/BurrGuide200810.pdf

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hopingandpraying
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Welcome to Lymenet! PM sent for upstate NY.

Check the Canadian Lyme Group at:
www.canlyme.com

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.

View "Under Our Skin" for free on www.hulu.com

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.

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hopingandpraying
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The gold standard for Lyme Disease treatment is found in the link for the Burrascano Guidelines:
http://www.lymenet.org/BurrGuide200810.pdf

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Friday13
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Do LLMDs follow this method? Tommorrow I need to make a decision to find help.
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Robin123
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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.

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TF
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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:

http://www.youtube.com/watch?v=s3_JwDPqGAg

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.

..................................................

Breaking up some of the text for easier reading for some here -

[ 05-05-2014, 12:15 AM: Message edited by: Robin123 ]

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Carol in PA
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The Importance of Magnesium to Human Nutrition
http://www.mbschachter.com/importance_of_magnesium_to_human.htm

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.

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Friday13
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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 ]

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TF
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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.

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droid1226
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You can always find the best lyme dr (ILADS, preferrably) you can, and then follow the Burrascano guidelines on your own.

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Friday13
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Thanks guys.

So is most of LymeNet in agreement that Burrascanos protocol is the treatment of choice for best chance at recovery?

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droid1226
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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

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TF
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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.

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Carol in PA
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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.

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Friday13
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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 ]

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jb151
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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.

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jb151
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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?

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TF
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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:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/115161?#000001

And start reading.

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jb151
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TF,

Was that directed at me?

Education?

Monkeys?

So since you are the expert, then what Dr would you go to?

Unreal.

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jb151
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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.

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TF
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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.

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jb151
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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

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Judie
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"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.

This thread contains other important lab tests:

Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=127210;p=0#000000

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Friday13
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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

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Friday13
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repeat
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TF
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jb151: Thanks for the apology. No offense taken. I will get back to you regarding your private message.
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lyme in Putnam
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This disease is nothing to play with. Causes a lot of medical and psychological symptoms that can ruin you.

--------------------
He took u to it, He'll you through

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lyme in Putnam
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Also have hormones checked.

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He took u to it, He'll you through

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Friday13
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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.
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Judie
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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.

http://www.tiredoflyme.com/what-to-do-if-you-suspect-you-have-lyme-disease.html#.U2h2F_ldXw8

http://www.tiredoflyme.com/how-to-prepare-for-your-first-llmd-or-llnd-appointment.html#.U2h2fvldXw8

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coffee71
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PM sent
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Friday13
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Update

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 ]

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surprise
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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)

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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KH111
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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.

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Friday13
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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 ]

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lostlyme
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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

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Friday13
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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.

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lostlyme
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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.

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Friday13
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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.

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Judie
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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:

SLyme by Amy Tan
https://www.byliner.com/read/amy-tan/slyme-disease

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Lymetoo
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Plenty of people get well.. it just takes dedication, a good LLMD and a bit of luck.

Here are some success stories:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

--------------------
--Lymetutu--
Opinions, not medical advice!

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lyme in Putnam
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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 ]

--------------------
He took u to it, He'll you through

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Friday13
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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.

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Judie
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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.

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lostlyme
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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.

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Friday13
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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 ]

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Judie
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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.

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lostlyme
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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

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Friday13
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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

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Carol in PA
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"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.

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Judie
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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.

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Friday13
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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 ]

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Judie
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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.

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Friday13
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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!

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delljen
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You can find stephani root tincture here
http://www.woodlandessence.com/herbal.htm
Just scroll down the page. Very reputable.

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 ]

--------------------
Lyme, Bart, Babs D, FL1953
I am just sharing my thoughts and experiences - I'm not a medical professional.

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Robin123
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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.

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Friday13
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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 ]

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TF
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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.

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Robin123
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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.

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applewine
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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.

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