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» LymeNet Flash » Questions and Discussion » Medical Questions » Needing Advise

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Author Topic: Needing Advise
seekinganswers505
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Please forgive me, this might be long but I feel the details are important.

A year ago, when I was 30 weeks pregnant I found a deer tick imbedded in my leg. I took it out with tweezers and send it to a lab for PCR testing directly on the tick.


I ended up getting the tick results back from the lab and the tick was positive for Lyme. I did eventually get my blood tested (about 2 months exactly after getting bit). The EIA test was positive indicating a past infection (IgM index .7 and IgG index 1.7) so it was sent to the Mayo Clinic for a Western Blot IgG/IgM test.

The IgM came back negative (no bands indicated) the IgG test was negative according to CDC standards but I tested positive for bands p18, p39 and p41-it didn't give me any of the other band results but just said positive for these three.

After doing some research it is my understanding that the Mayo Clinic is not the gold standard in terms of Lyme testing and that there test is not very sensitive nor does it test for all the bands? I don't know (considering the bands were seen in IgG) if I have a chronic/ late infection from childhood that was perhaps kicked up again because of the new tick or if it was this new tick that is causing the issues.


I'm currently having problems with my legs. I have been having tingling, burning and some numbness on one side and on the other it feels like my leg can't hold my weight anymore. It is making walking very difficult. I've also been having night sweats, headaches, inching sensations, etc.

My doctor is not a LLMD and we don't really have any in this area (although I am trying to be linked with someone) through thos website seeking a doctor part.


My doctor is very focused on the CDC criteria for Lyme and will not order any other blood work (through a better lab, etc). She believes that my symptoms are a slipped disk and is currently ordering an MRI to check that. She doesn't believe I have Lyme because of the negative Western Blot-regardless of the bands or the EIA test. I know that band 39 is very Lyme specific and worry about an infection being missed.

I had my blood taken 2 months after being infected, it may not have built up to the point of being fully detected yet. I was also pregnant at the time so my immune system was lower. I want to have my blood tested through Stony Brook or Igenx as I know that they are the gold standard. However, they require a doctor to order the testing and since I'm in NY-this is complicated in terms of Idenx.

So question: Should I let this go and accept a negative as a negative??? How do I move forward when I'm being blocked in every direction.

Thanks in advance for any help. Love the forum : )

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Seeking Assistance

Posts: 19 | From Southern Tier New York | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Welcome to lymenet seekinganswers505.

I urge you to connect with a support group for a referral to Lyme Litterate M.D.

https://www.facebook.com/LymeWNY/

Also, someone here at lymenet might also have suggestions.

Do not let this go. Your quality of life will suffer greatly. You are already showing symptoms of Lyme disease. I don't mean to scare you, just nip it in the bud before it escalates further.
Healing wishes to you.

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hopingandpraying
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Welcome to Lymenet! Just sent you a PM with names of LLMDs in PA & MD.

You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

LLMDs are far and few between, unfortunately. You need to go where they are. At least half of all Lyme patients go out-of-state to get proper care.

Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/NewYorkLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/
www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.

Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Posts: 8853 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
seekinganswers505
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Thanks for the information! This has been so stressful : ( It doesn't help that non LLMD's look at me like I'm nuts. Why the h*** would I have lyme specific antibodies if I don't have Lyme. The bands I tested positive on are Lyme Specific!

Seriously get treated like I'm nuts! I'm almost embarrassed to keep bringing it up at this point!

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Seeking Assistance

Posts: 19 | From Southern Tier New York | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
seekinganswers505
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They wont even test my son who I was 30 weeks pregnant with at the time when I found a Lyme positive tick in my leg!

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Seeking Assistance

Posts: 19 | From Southern Tier New York | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Unfortunately, many have experienced the same, so you are not alone. Just don't waste you time or energy on non-LLMDs anymore!

Once you get treated by a LLMD who knows what he/she is doing and has had many years of experience doing it, then you certainly will notice a profound difference.

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TF
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Non-lyme literate doctors have treated ALL of us as if we were nuts. Thanks to them, it took me 10 years of sickness before any doctor thought to test me for lyme.

You know what you are doing. Why listen to the uniformed? You need a lyme specialist. You have come to the right place to get some good referrals.

Stay away from non-lyme literate doctors. All they did with me was yell at me, treat me like a mental patient, offer me antidepressants, etc.

You see, they know nothing about lyme disease, so they can't tell when they have a lyme patient in front of them.

Study the Burrascano Guidelines.

http://www.lymenet.org/BurrGuide200810.pdf

Read page 7 where he says that NO lyme test can be relied upon to be 100% accurate. The only way to get a lyme diagnosis is to go to an expert on lyme.

Take an extremely detailed list of your symptoms to the first appointment. Use pages 9-10 to compile your list. Lyme is very much diagnosed based on symptoms. Your tick history is also considered. And, your significant test results will also be considered.

I don't know that I would do an MRI of the back if I were you. You will continually go down rabbit trails as long as you visit and listen to non-lyme literate doctors. You can waste a lot of time and money doing this.

Study the Burrascano Guidelines. Then, I believe you will become confident about what is going on.

Regarding your son, if he is non-symptomatic, then the very best pediatric lyme doctors will NOT test or treat him. They say,"Leave well enough alone. The immune system is handling it."

However, if he has sufficient symptoms, then they will test and treat him. So, if you want the name of one of these great pediatric lyme specialists, let me know.

Be prepared to travel as there are so VERY few good pediatric lyme doctors. I hope your son is doing well. Let me know.

There is no sense testing a non-symptomatic person.

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seekinganswers505
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Thanks for the information. My son is current not having any symptoms-so for know, I'm fine with holding off as I don't want him to have any unnecessary test/ medications.

In terms of the MRI of my back, I'm getting it done because I have not had any other test done (except blood work) and I need to make sure myself that there is nothing wrong with my back. If the results yield nothing, I will do no further testing as it couldn't be anything else but the Lyme. I also hope that once my doc rules this out, she will allow me to get better lab Lyme testing.

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Seeking Assistance

Posts: 19 | From Southern Tier New York | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
TF
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Start doing your homework on lyme doctors NOW! You have to really research doctors to figure out who to go to. There is a lyme doctor learning curve and most people do not make a good choice for their first lyme doctor.

I really doubt that your doctor is going to be willing to do further lyme testing if your MRI is normal. That is not what non-lyme doctors do. You are going to have to go to a lyme specialst even to get further tests.

What you need to know is that the best lyme specialists often say that tests are unnecessary if you have sufficient evidence of lyme--which you have. So, why spend $700 with Igenex getting a lyme and coinfection panel of tests.

Also, your doc will have no clue as to what tests to order at Igenex. So, you want a lyme doc to do it. They will want to test you for not only lyme but also babesiosis, bartonella, and perhaps some other coinfections based on the symptoms you are having.

So, do this the right way. Find the very best lyme doctor you can and go there to get your diagnosis.

If you want the name of the one I recommend, let me know. It will be a 3 month wait to get in, so you really should start the process NOW. If your MRI shows a messed up back, then you can stop the process.

If you just do one thing and wait for the result and then do another, you are going to lose months sitting around waiting to get to a lyme doc.

If you can travel once every 6 months to Washington, D.C. you have an opportunity to see a lyme specialist who hasn't taken new patients in the last 2 1/2 years. This is a real opportunity for you.

Study the Burrascano Guidelines. Night sweats are a classic sign of babesiosis. You know your bad back can't cause night sweats. Neither can it cause the positive bands you got on the lyme Western Blot.

Look at pages 9-10 and see all your symptoms right there. See page 27 for a brief list of the symptoms of each coinfection. Nobody gets just lyme. Nearly everyone with lyme also gets babesiosis and bartonella. So, expect that you will have all 3--"the big 3" as they call them.

And, if your MRI shows a bulging disc, then what are you going to do? I had a bad back and also lyme, babs, and bart. So, you will then have to treat both--the back and the lyme.

You may not be in an either/or situation. You have been beaten down by doctors. You are the one thinking clearly about all the evidence in your case pointing to lyme. They are the ones ignorantly trusting the lyme test!! They don't know any better.

So, educate yourself so you can take the next step forward in getting lyme treatment.

Make sure you read what Burrascano says about steroids. If you have a bulging disk, they will likely want to give you epidural injections. I got those. They are injections of steroids.

But, if you have lyme, such injections will make your lyme go wild and could lead to an incurable case of lyme! So, see why you have to start educating yourself now?

"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (p. 4)

"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (p. 12)

So, because you have a very good chance of having lyme, you will NOT be able to take the treatment that will be recommended for a back problem--injections of steroids (called epidural injections, nerve root blocks, etc.) You will be able to do physical therapy and use heat.

Burrascano says not to allow any doctor to do electrical stimulation on the back also. "Ice (vasoconstriction) and electrical stimulation (muscle spasm and trauma) should not be used!" (p. 31)

Since I happen to have degenerative disk disease in my low back, I can easily tell you what you must avoid in your case.

Don't make a mistake and cause your lyme to get 100 times worse. Study the Guidelines as much as possible so you can learn as much as possible about lyme. You will need to be your own advocate each time you meet with your non-lyme literate doctor. I recommend you meet with that doctor as few times as humanly possible.

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jory
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Hi seekinganswers,

TF is really correct in advising you to be proactive about this - the earlier you treat the less future complications he'll have. If only mine was caught in October before it became the mess in November.. Bonnie and hopingandpraying are also on the money - get to an LLMD quickly!

Best wishes, you're in great hands here.

Jory

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bluelyme
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The dna connexions test need no doc .if younare breastfeeding it is wise to get on some amoxiccilian which can be ordered online ...good luck sorry welcome

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Blue

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seekinganswers505
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Thanks so much for the responses. Seriously, I feel like I'm living in alternative word full of conspiracy haha. Who knew that such a war was among us.

I stayed up last night and did a lot of research. I will not let them put any steroids in my back. I never really planned to as I just wanted to know what was wrong with me so that I could cover the bases in my mind. If anything I might take, Motrin for the pain. That's ok right? Either way, I know on top of whatever they find in there, I have Lyme.

So last night I found a lab that works with Igenex (True Healt Labs) and they have an Igenex doctor order tethe st for you. I got the script to get a Igenex Western Blot IgG done and I paid 150 dollars out of pocket to do it. I know that testing at this point is almost silly but the only test that I've had done was Mayo Clinic and with my research, they seem like to worse one to go on.

I feel I owe it to myself to do this. I did not order the screening test (because I already tested positive) or Wester blot IgM test as at this point I've had the infection either my whole life or greated than 7 months. I figure that is the best bang for my buck and honestly I can't afford any other test right now. After this I don't plan on ordering any test for Lyme as I know that I have it.... but I need to know all the bands that I have, strength of infections, etc. I HAVE to know.

I plan on scheduling an appointment with a LLMD as soon as possible and I don't plan on waiting. I do need to get testing for the other co-infections, I know. Honestly, I read the symptoms of Babesia and I got scared because it sounds so much like me. However, the tick that they found in my leg when pregnant was PCR tested for Lyme, Relapsing Fever, Babesiosis and Anaplasmosis. It tested negative for these and only positive for Lyme. But this, of course, doesn't rule out an unknown infection in childhood/ tick bite (which my blood test indicates).

I heard that LLMD's don't take insurance-how is everyone able to afford the visits, meds, test ect??? I'm a Licensed Mental Health Counselor and make good money......geeez. I would like to be able to use my insurance for the co-infection testing at least! I don't want to start treatment for those if I don't have them so I do want to test.

I did get some decent LLMD's from different places. Of course if anyone has any recommendations, please let me know as I would be very grateful.

Thanks so much for all of the support. Seriously means the world to me right now.

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Seeking Assistance

Posts: 19 | From Southern Tier New York | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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You are experiencing doubt. You want concrete evidence. I m sorry but it just doesn't work that way for TBI's.

It is a very real doubt but you HAVE to listen to your body. Even if you get testing from Igenex, it is not recognized by the CDC thus finding a doctor that accepts insurance is like finding a needle in a haystack.

I had the same reactive bands you have. My LLMD diagnosed me clinically with Lyme. My first visit was challenging. I had to be placed in the back seat of my car. I had quiet headphones, eye mask, blanket, in and out of conscienceness. Had to be held up to walk.

If it was any other disease, I would have been in a hospital IC unit, to be sure. It s inexcusable the hardships Lyme patients endure.

Your 1st visit will be lengthy. Mine was 3 hours. Over 1200.00$. LLMD wanted full blood work panel through Igenex. I explained I simply could not afford it. She was willing to work with me and ordered a boat load of blood test through quest..

I am new here too but I ll help you with links that might be able to help you navigate this dreadful maze.

https://www.facebook.com/LymeDiseaseANewHope/posts/1389861601029599

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TF
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You really have to give up on the idea that the tests are going to tell you what diseases you have.

First, the tick tests are not 100% accurate. You must accept that. A woman here on LymeNet sent her tick for testing and it came back negative. She still got lyme.

Call the lab and they will tell you their test is not 100% accurate.

You said, regarding coinfection treatment: "I don't want to start treatment for those if I don't have them so I do want to test."

What you must get firmly in mind is that the coinfection tests (like babesiosis) are less reliable than the lyme tests! So, why spend any money on testing when that money could go toward seeing a very good lyme doctor?

These tests are NOT covered by insurance if you go to Igenex. We are talking about hundreds of dollars. You could ask the lyme doc to test you through Quest or LabCorp so you don't have to pay much, but those are LOUSY tests that miss many, many cases of babs.

People pay for the expensive first appointment with a lyme specialist by credit card. This way, they can pay off the bill over time. Others get family or church to help them pay for that expensive first appointment.

You put the expensive Igenex testing on the credit card also.

If you go to a lyme specialist who is afraid to treat people without a positive test, you are going to have a frustrating experience and waste money, so you have to be SURE that the doc you select will NOT require testing and will treat you based on symptoms, the test you already have, and your history of tick bite and results of your back MRI.

Here are some quotes from Burrascano to give you more info on the tests:

"DIAGNOSTIC TESTS
Diagnostic tests are insensitive and problematic. There are at least thirteen, and possibly as many as two dozen Babesia forms found in ticks, yet we can currently only test for B. microti and WA-1 with our serologic and nuclear tests." (p. 23)

So, here Burrascano says that there are 13 or even 24 different strains or types of babesiosis, but we only have blood tests for 2 of them! We can only test for babesia microti and WA-1 (named after the state of Washington where it was discovered). WA-1 is also called babesia duncani.

So, I hope you can see that you could very well test for both of these strains and still get a negative result, even though you have babs and all of its symptoms.

Now can you see why a top lyme doc spends so much time questioning you at the first appointment and why a really good lyme doc, in YOUR case, will just diagnose you clinically with babs?

A course of treatment will confirm the diagnosis! Big time, I predict! Wow! When I started on babs treatment, all hell broke loose! The babs will flare and make you terribly sick. It happened to me every 7 days like clockwork.

I would start getting sick Friday evening around 7 p.m. It would last until Sunday 7 p.m. It sounds so crazy, I was at first afraid to tell it to my lyme doctor.

For that 48 hours, I just lay there not eating, drinking, talking, going to the bathroom, just drifting in and out of consciousness with the most horrible feeling of DOOM that I could not talk myself out of.

When I told my lyme doc, he said that babs has a 7 day cycle and a 14 day cycle and I was experiencing the 7 day cycle.

Can you see why you don't need to spend hundreds of dollars on babs testing since you are already a walking advertisement for babs and a month's worth of babs meds will tell the tale?

All of your meds will be covered by your insurance. So, it costs you practically nothing to do a short course of meds and see how your body reacts.

Lyme is not like other diseases where you get a test for it and then you know if you have it or not.

Instead, lyme and coinfection testing are in the dark ages medically. No work is being done to improve the lousy tests that we have. And, there is a reason for that.

The medical community in general has been taught by the Infectious Diseases Society of America (IDSA) that lyme is RARE and EASILY cured with 2 weeks to 28 days of doxycycline.

So, since the IDSA has taken this stand on lyme, why bother spending any money improving tests for this disease which is really NO BIG DEAL!

The IDSA has the medical oversight for lyme since lyme is an infectious disease.

Meanwhile, our lyme doctors have formed an organization of their own called the International Lyme and Associated Diseases Society (ILADS). ILADS says that the truth is lyme is worse than an epidemic and extremely difficult to cure.

So, there you have it. These are the 2 camps into which all doctors fall. Your doc is in the first camp and that is why he/she will NOT test you any further for lyme. You got the test and it said you didn't have it. Case closed.

Your doc probably never even heard of babesiosis. Ha.

So, get educated about what is going on in the lyme world. Then, you will be able to navigate. We have all had to get this education. That is what is so great about what Dr. Burrascano did.

He wrote the Guidelines to educate all doctors in the U.S. about lyme and coinfections. So, those who are willing to think for themselves can read what he learned and profit by it.

Give your doc a copy of the Guidelines and see what happens.

Regarding testing for bartonella infection, Burrascano says this:

"Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is very insensitive. Therefore, the diagnosis is a clinical one, based on the above points. Also, suspect infection with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with a significant course of specific treatment." (p. 24)

I hope you are getting the picture.

Now, how about testing for ehrlichia? See this quote:

"Testing is problematic with Ehrlichia, similar to the situation with Babesiosis. More species are known to be present in ticks than can be tested for with clinically available serologies and PCRs. In addition, serologies and PCRs are of unknown sensitivity and specificity. Standard blood smears for direct visualization of organisms in leukocytes are of low yield. Enhanced smears using buffy coats significantly raise sensitivity and can detect a wider variety of species. Despite this, infection can be missed, so clinical diagnosis remains the primary diagnostic tool. Again, consider this diagnosis in a Lyme Borreliosis (LB) patient not responding well to Lyme therapy who has symptoms suggestive of Ehrlichia." (p. 25)

Now you understand why Burrascano says on p. 7 that lyme is diagnosed by the clinician (doctor) rather than ANY TEST.

Now that you know these things, become a lyme activist and work to get the Government to change the testing situation. See "Activism" on LymeNet to find out how you can make a difference.

You said "I did get some decent LLMD's from different places." I don't mean to be rude, but the truth is you don't know how to tell a decent lyme doc from a great one from a lousy one.

You have not yet gone through the lyme doctor learning curve, and it takes time to learn how to pick a great doc. Here are a few tips on how to select a good lyme doctor:

1. Look at their website. If they specialize in lyme (which is what you want), their website will be all about lyme disease.

If the doc treats many other conditions, he will not be able to develop the expertise of a doctor who treats lyme all day, every day. You want to go for expertise.

2. Contact lyme support groups (see "Support Groups" on the left side of the page) and ask which doctors are getting people well.

If you want a doc who follows Burrascano, ask the groups which ones follow him.

Contact as many people as possible about the doctor. Ask here on LymeNet to see if the doc has a good reputation for curing people.

MANY doctors treat lyme, but just a very few know enough to cure a person of it. Lyme is an extremely complicated disease (really, many diseases) and it's treatment is long and complicated. Each person's case is different.

Find a doc who has treated lyme for at least 10 years. That's how long it takes for a smart doctor to be able to treat more than a simple case of lyme (where the person was bitten a couple of days ago and has a bulls eye.)

Once you have had lyme for at least a year, your case is much more complicated, so find out how many years of experience the doc has treating lyme.

If the doc speaks at lyme conferences and has published articles in medical journals on the topic of lyme, those are also good indicators of expertise.

Just know that a lyme doc can "go bad" at any time. That means they lose their nerve and stop diagnosing and treating lyme properly.

So, you HAVE to find out from local people if the doc is still treating the way past reports say that he is.

I am trying to give you a complete education here.

Lastly, call the doc's office and find out what the wait is to see a new patient. The top docs are often not taking new patients or have a 1 or 2 year wait, etc.

There is one exception right now. This top doc has been closed to new patients for 2 1/2 years but is now taking some. See her website to see what a real lyme expert's website and credentials look like:

gingersavely.com

She only requires in-person office visits once every 6 months. So, that is how people from all over the east can easily be her patient. Even people from Texas and New Mexico fly in to see her.

She will test through Igenex but will often say testing is unnecessary in a particular patient's case. You can sign a paper saying you want treatment without test results. She will treat at the first appointment if your symptoms clearly point to your diseases.

(Many doctors will not treat until test results come back. Many don't use Igenex. Many will only treat people with positive tests, etc.)

YOu do telephone appointments every month with this doc.

Stopping now. Do more reading and research and be willing to modify your current beliefs and plans based on gaining more knowledge.

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TF
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You said:

" I did not order the screening test (because I already tested positive) or Wester blot IgM test as at this point I've had the infection either my whole life or greated than 7 months."

I hope you DID order the lyme Western Blot IgM !!!! That is the one that is most often positive for a person like you who has had lyme for at least a year.

Not knowing anything about lyme testing, you would not realize that lyme does NOT follow the normal rules of Western Blot IgG and IgM testing. Read all about it here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

"Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result. "

This explanation of the Western Blot is found at the top of Medical Questions under "Important Info about Lyme And Cos."

You really should read everything under that "Important Info" topic to get more of an education. Don't spend any more money until you read more, or ask us on here before spending any significant amount of money.

It takes a lot of reading to learn all about all of this.

Can you add IgM testing to your current test order? I hope so!

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Bartenderbonnie
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New York State is trying but the wheels move slowly. . .

https://www.nysenate.gov/legislation/bills/2017/s4713/amendment/original

I know all this new information is overwhelming but you have to be your own advocate for wellness. No one will fight harder than yourself, right ?

It took me 3 years and 19 doctors till I got to lymenet and an LLMD.. My story is the norm, not the exemption. I'm now in year 4 and 23 doctors, as I have other disorders brought on because of TBI's.

But I am getting better. And you will too. Just don't waste anymore of your precious time. We can do this ! Yes we can !

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Thanks for the information. I know that Igenex has there own criteria for a positive result that differs from the CDC. However, they also reports if you are CDC positive. I quess I was under the assumption (and obviously may be wrong) that if you test + for 5 out of the bands required by CDC that you could consider yourself CDC positive. Are you saying that the CDC doesn't recognize a positive through Igenex even if they use their criteria?

I honestly think I can get a CDC positive. I was pregnant at the time (which suppresses your immune system) and I also was on Amoxicillin at the time I was tested (which may also lower your immune response on these test). If I tested positive for 3 IgG bands at that point, I feel that there is a chance I could test + for more bands now.

That was my reasoning before reading your post Maryland, but now I obviously need to rethink things if they wont even consider a CDC + through Igenex.

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Bartenderbonnie
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The problem is the CDC treatment guidelines.

Even if you test positive with CDC criteria, you will only be able to recieve 28 days worth of antibiotics. The CDC says that time frame is enough to cure Lyme disease. No mainstream doctor will treat you after that. You suffer horribly alone.

After that, your s### on a shingle. But you find you are already in that position now.

So what we are trying to tell you is to bypass the political nonsense in order to get well.

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Ok I see what you guys mean.....
I know that most people need more the 28 days worth of meds (some for years) but I also know for some 28 days is enough. I'm the type of person that starts out as small as possible and works her way up. I've never had any of the meds you are suppose to take for Lyme so I don't know how they would work for me or my symptoms.

I was thinking (before reading all these post) that if I can test CDC positive and get 28 days worth of antibiotics (per my insurance) it would be a start. Then if my symptoms remained or came back, I would seek a LLMD and do whatever I had to do. I have two young children and a full time job. I honestly don't have time to go on a health crusade unless I have to and my health/ quality of life demands it.

I've never been treated for Lyme so I'm not sure if I have more of a latent infection that needs treated and could alleviate symptoms or a chronic infection which will require more long term treatment.

However, I do appreciate all of the information and now that I know more.....I need to rethink things! Thanks for the link to that LLMD that is taking new clients! I'm currently checking out the website..... : ) The CDC SUCKS and honestly I cannot believe that they can get always with treating people like this.

I already ordered the IgG and I got the order form already signed by the doctor. To add in the IgM it would cost me another 150 dollars which I cannot afford right now. I plan on eventually possibly testing for this but I just couldn't do them both at once. When I tested through Mayo, I came back negative for IgM with no bands indicated so I guess I thoughts that I was more likely to test positive with the other one.

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TF
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Igenex is in the camp with our lyme specialists.

So, the IDSA and all of the doctors that side with them say that you can't trust Igenex, they find too many positives, etc.

They even try to say that Igenex is not an accredited lab, but they are. Medicare pays for the Igenex tests for anyone on Medicare.

So, just know that the other camp lies so much about Igenex that your doctor will dismiss your Igenex results.

The fact that Igenex will report all of the bands (which Mayo and Quest, etc and all those is the other camp do not) will tip your doctor off if he/she never heard of Igenex. So he/she will be quickly brainwashed to reject the Igenex results.

Getting a CDC positive isn't going to get you anything anyway. You will have to tell us what you think it will get you so we can explain where your thinking is flawed.

We have been living with the reality of the "2 camps" here in the U.S. for over 30 years. The top dogs in the medical establishment are not backing down in spite of the facts--such as the fact of so many chronically sick people.

I will send you the info on the doc I highly recommend for you to see. It is a 3 month wait right now, so that gives you time to save up. But, you will have to put down a sizeable deposit (on a credit card) to hold your first appointment date. That deposit is refundable if you cancel well in advance.

If you can't afford another $150 to add the IgM to your Western Blot, you are really going to have a problem paying for lyme treatment. Time to tighten the belt.

You have nothing if you don't have your health. And, if you let lyme continue to progress, you will eventually lose your brain. That is a terrible thing to lose.

First, you will lose your job, then your health insurance, then all credit cards, then most of your friends (who can't continue to befriend a chronically ill person who can't go out), etc.

So, if you wait too long, you won't have options. If you go after this now while you still have income, credit, friends, etc. you have more ability to treat this condition. So, don't wait til you have no resources left to finally treat lyme.

Good news is that good treatment will reverse all of the symptoms.

I was cured 12 years ago and I have the same life and same brain I had before lyme disease! Praise God!

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TF
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You most likely got lyme 1 year ago when you had the tick bite. So, look at this statement about having lyme for 1 year:

"Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)." (p. 3)

http://www.lymenet.org/BurrGuide200810.pdf

So, at the one year mark, your immune system is breaking down at a clinically significant level. Think of it like AIDS. With a compromised immune system, you will just get sicker and sicker.

So, educate yourself and take action.

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Ok I'm educating lol. And yes I could of course afford 150 dollars but I just didn't want to spend more money if I didn't have to in order to get what I needed.

It's not about me getting Igenex tested to get antibiotics (though that would be nice) or with the hope of being taken seriously by ID (although again that would be nice)or because of LLMD's not treating me otherwise (because it sounds like they will) but its about ME NEEDING TO SEE THOSE RESULTS. Not to prove to myself that I have Lyme (I already know that I do) but rather just to be educated on my own body. Plus certain bands mean different things and may affect different parts of your body and I want to know that stuff....I'm curious......

And I didn't put the testing on a card, I paid upfront.

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See below.

39 BmpA- a major protein of Bb flagellin; specific for Bb- Sometimes found in those with joint involvement. It is the most specific antibody for borreliosis of all bands.

I tested positive for 39 and my most major issue is my joints in my legs and back.....

Does this make sense?

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And I don't understand why they can't look at the blood of someone who was supposedly "treated" for Lyme with 28 days worth of antibiotics and check for live Lyme Bacterium. Put an end to this, Chronic Lyme doesn't exist bull ****. Just saying....

I have a hard time why they can't prove that there is Chronic lyme???? There is a big difference between post treatment lyme symptoms (which is what the CDC claims people have) and an actual live lyme infection. Can we just look under a microscope and check for the bacterium???

Might be a stupid question but I don't get it.

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TF
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The IgG and the IgM show the same bands. So, if you want to know what bands you are positive on, I recommend you order IgM. It is more likely to be positive at your stage of the disease.

Also, give us a reference to what each band means. I have been in the lyme world 14 years and I have NEVER heard anything like bands are linked to symptoms. Never. Instead, you need to read Dr. C's explanation of the Western Blot.

He tells you what each band means. Band 41 means the antibody that is formed to perfectly attach to the "tail" of the lyme bacteria, for example.

The immune system doesn't make one big antibody to the lyme bacteria. Instead, it makes various antibodies to various parts of the bacteria. All together, these antibodies will cover the entire bacteria and kill it that way.

So, I think you got some bad information regarding bands being linked to symptoms.

From Dr. C:

"39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody. "

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

So, band 39 is the band that can mean lyme and no other bacteria. Band 41 is the antibody to the tail of borrellia.

Lyme is famous for attacking joints. If you have a lot of joint swelling and pain, that is classic lyme. But, it definitely doesn't have anything to do with band 39.

Burrascano had a pathologist friend, Dr. Alan MacDonald who looked at the blood of Burrascano's patients under a high-powered microscope. He looked at it after 30 days of antibiotics, 40 days, 60 days, etc. (MacDonald worked as a pathologist for a hospital local to Dr. B.)

When He still saw spirochete in the blood after 60 days of treatment, Burrascano knew that 60 days wasn't enough to cure lyme.

Then, he notified his friends in local hospitals and private practices of the finding. Immediately, he became persona non grata.

These friends who were communicating with him daily while MacDonald did his tests no longer would return his calls. Then, they began spreading lies about him like that he was gouging sick people to get rich off of them, that he had a tick-shaped swimming pool built with all the money he was making off of poor sick people who were convinced that they still had lyme after 30 days of treatment, etc.

This is the day the 2 camps were formed!!

To understand what the motive was for this behavior toward Burracano, you can watch a short clip of him testifying before a Senate subcommittee in the early 90s. Here is the clip:

https://www.youtube.com/watch?v=LjvTonxC__8&feature=share

So, their motives are not honorable. They do not want to know the truth. There are hundreds of studies proviing that lyme isn't cured in 30 days. These people refuse to publish such studies in the journals that they control. They refuse to look at them.

They attacked Dr MacDonald and said that he was NOT seeing lyme in the blood but artifacts. In other words, the guy did such a poor job of looking at the blood that he couldn't tell the germ from some contamination he introduced onto the blood slides himself! If this were true, then MacDonald was incompetent to work as a pathologist, so this was a total slam of MacDonald. They still say this about him to this day!

Both Burrascano and MacDonald have been videotaped telling these things that I am telling you.

This is why it is called the lyme conspiracy.

So, now I hope that your eyes are opened and you see the enemy that you are facing. It is the IDSA that created post lyme treatment syndrome, not the CDC. But, the CDC is as invested as the IDSA, so they both speak the same things--crap.

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Here is the link I found some info from about the bands.

https://sites.google.com/site/marylandlyme/lab-tests

Please understand that I did a bunch of research and this was not the only place I found information like this about the bands. I was moving through things quickly so I want spending a lot of time verifying the validity of this information or the website but like I said....I saw it in a few places.

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Bartenderbonnie
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quote:
Originally posted by Bartenderbonnie:
Wow, the southern tier is a hardy breed ! [Smile]

My home away from home was the Jamestown area. Also Salamanca. Your fighting spirit will serve you well towards getting the answers you so crave.

You stated your present goal is to get a positive CDC western blot result. I used to think the same way you are until I realized that it just doesn't matter when it comes to treatment, or lack there of.

That said. . .

Here are some tips to get you your positive CDC western blot results :

Borrelia have unusual hideouts in the human body, such as lymph nodes. Do a 1 hour lymph node massage before you take your test. A massage of lymph node areas has shown to release large numbers of borrelia into the blood stream.

Have your blood drawn on a Monday or a Tuesday. Research shows the borrelia have the potential to clump together, resulting in false negative results. The fresher the specimen, the more accurate the test results. Express shipping in early week assures the specimen does not spend the weekend sitting at the post office.

Giving patients antibiotics before a test will convert a negative or equivocal western blot to positive in about 36% of cases. This happens because antibiotics cause some of the bacteria to die. When borrelia dies, it is less efficient at avoiding the immune system.

Giving patients 4 weeks of antibiotics and then 2 weeks off causes the immune system to create antibodies, which is what the western blot tests for. This may convert the negative or equivocal result to a positive.

Take a 1 hour long hot shower or bath to get the borrelia out of hiding and into the bloodstream. Then get your blood drawn immediately.

Hope this helps.

P.S. Don't know why my post is in bold letters, sorry.
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Bartenderbonnie - your awesome.

I thought about what you said and I want to get a positive for myself you know. Validation would be nice even though I know false negatives are so common. It's my understanding that false negatives are the norm with this test but false positives are rare. That being said....while negatives mean nothing in terms of actually having Lyme. Positives definitely mean something.

I don't mind going on a fighting crusade myself personally....but I would feel a lot better about going into debt and taking a bunch of time off work and away from my family if I had the validation of a positive test. And because the CD criteria for Lyme is so ridiculously hard to achieve....yes I would like to test positive. If no other reason then to feel vindicated.

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I do have the PDF file of Dr. B and plan on reading it tonight BUT I'm confused about something.

Everything I've read so far indicates that IgM antibodies are bigger then IgG antibodies and that they are present in the beginning of an infection. It is also my understanding that they peak after about a month or two after infection and start to decline. It is at this point that your IgG antibodies take over and you stop producing IgM antibodies and instead produce IgG. So depending on when your testing depends on what you should be looking for.

Because I was infected a year ago at least (perhaps even before then in childhood) why would I test for IgM bands over IgG? Especially when both EIA was low for IgM and Mayo with no bands indicated. My positive EIA was on the IgG index at 1.7 (IgM was .7). So like I said, I believe I got the most bang for my buck with that test.

Is my reasoning flawed??? Is the answer in this question in Dr. B's PDF file?

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Bartenderbonnie
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Your answer lies in TF's post from earlier today.

She posted this link :

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

As long as the borrelia remain active in your body, they will cause your immune system to produce new antibodies.

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TF
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30 days of lyme treatment MIGHT work for someone who gets to a lyme specialist within a week of their tick bite.

You need to forget the idea that 30 days of meds could possibly cure you. You need to forget the idea that you DON't need a lyme specialist. At this point, you do.

You are not going to be able to avoid the expense and taking a few days off for the first lyme appointment and likely for monthly Herxheimer reactions. You can arrange the monthly telephone appointments around your work schedule.

While treating, you will feel worse before you feel better. There is no way around this because of the length of time you have had lyme.

If you happen to be fortunate, you might be finished with treatment in 9 months, but that is a minimum that does not often occur. See the average length of treatment on the top doc website I gave you above. Expect 18 months of treatment.

You need to treat lyme and babesiosis at a minimum. And, the odds are that you also have bartonella. You will find out if you have it once you treat lyme and babs. It will begin to emerge then if not sooner.

So, you have most likely 3 difficult to cure diseases. If they were easy to cure, then none of this "2 camps" etc. would be going on.

Also, you must realize that every ID doctor is a member of the Infectious Diseases Society of America (IDSA). So, while theoretically possible, it is very unlikely that any ID doc you see will treat you with your test results.

And, if you tell them you were on amoxicillin shortly after you were bitten (which evidently you were), they will say you have had enough treatment.

One last Burrascano quote for you:

"GENERAL PRINCIPLES

In general, you can think of LB as having three categories: acute, early disseminated, and chronic. The sooner treatment is begun after the start of the infection, the higher the success rate. However, since it is easiest to cure early disease, this category of LB must be taken VERY seriously. Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word." (p. 3)

See that last sentence: Undertreated infections will inevitably resurface. That is what has happened to you, but camp 2 will deny it to eternity.

Now that you have had lyme for at least a year, treatment is going to be complicated, long, and expensive. Having the money to travel to a top lyme doctor gives you the best chance of getting your health and life back.

You have the IDSA to thank for this. That's why lots of people on this site believe that the few who make up the board of the IDSA will burn in hell.

They are making life a hell on earth for untold numbers of people.

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The IDSA sucks and just like everything else: all about money.

I watched "underneath the skin" last night and I'm so sad of the reality of the situation. I can't believe in 2017 this childish conspiracy still exist. I'm suprised that no one after seeing that film has not investigated and put a stop to this.

It said in the film that Connecticut was investigating? Anyways, I found a bit of an underground railroad where I live of a doctor willing to treat. The name was given to me by a resident who has Lyme who has a local Lyme organization. She had to make sure I was a real person before giving me the name/contact info. I think I'm going to start there.

Thanks for all the information. I don't plan on telling anyone that I was treated with Amoxicillian 500 mg 3x per day for 21 days already. But I was, per my insistence within 24-48 hours after pulling out the tick. That's another reason why I'm hoping I won't have a hard to treat case, who knows. I really want to do on Doxy for 28 days as I couldn't do this when they found the tick because of pregnancy.

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Bartenderbonnie
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So happy you decided on a LLMD seekinganswers505 !

Knowledge is power.

One other suggestion, if I may.

Not all LLMD's treat with Burranscano's gold standard protocol for Lyme and TBI's.

If you want reviews from other Lyme warriors who have gone to your new LLMD, you can go back to "seeking doctor" here at lymenet. Post just the doctor's initials and ask if anyone has experience with your doctor.

Then you will be able to make an educated decision.

Healing wishes on your journey.

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TF
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The Guidelines, starting at page 18, tell you the necessary dosages.

13 years ago, my lyme specialist cured my lyme with amoxicillin, 1,500 mg 3 times per day (for a total of 4.5 grams per day) plus probinecid. This was for the spirochete form. And, flagyl (metronidazole) 3 times per day for the cyst or persister form.

Take that for a few months.

Here is the quote from Burrascano:

"Amoxicillin- Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are often needed

Pregnancy: 1g q6h and adjust." (p. 18)

Without the probenecid, the amoxi is out of your bloodstream in something like 1 1/2 hours. Amoxi has a short half-life.

So, the protocol is high-dose combinations of antibiotics as you will see in Burrascano.

Different meds for babesiosis and still others for bartonella.

Compare any treatment you get to Burrascano.

Eat the anti-yeast diet while on this protocol. Take the supplements Burrascano says are required. Do the exercise required to restore your immune system (1 continuous hour of weightlifting every OTHER day--a full body workout each time).

It is a 4-pronged approach and all 4 prongs are needed:

1. kill the germs with high-dose antibiotic combos

2. restore the immune system (with weightlifting)

3. without destroying the good gut flora (by use of probiotics 2 hours after antibiotics, anti-yeast diet to deter candida, kefir daily, etc.) and

4. replenish what the diseases have depleted (by taking various supplements and herbs)

I hope you can find somebody good in your area.

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Yes I did get to read Dr. B's quid and be sure to take that to my appointment.....I'm ok with taking whatever the LLMD suggest as long as it goes along with the guide. I'm really hoping to avoid IV drugs.

I've started to get wrist pain and tingling in my hands. I'm more convinced than ever that it is not just a "slipped disk or arthritis" even though though those things may be present as well.

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quote:
Originally posted by Bartenderbonnie:
The problem is the CDC treatment guidelines.

Even if you test positive with CDC criteria, you will only be able to recieve 28 days worth of antibiotics. The CDC says that time frame is enough to cure Lyme disease. No mainstream doctor will treat you after that. You suffer horribly alone.

After that, your s### on a shingle. But you find you are already in that position now.

So what we are trying to tell you is to bypass the political nonsense in order to get well.

This pretty much sums it up for me. Positive by CDC standards and only was given 21 days of abx. Skipped the BS with my PCP (who wanted me to have a spinal tap) and went straight to an LLMD. Yes, it was expensive. But my life is worth it! LOVE the LLMD I'm seeing and so grateful for the referral I received from this group. I'm slowly getting my life back AND I have a great Dr. to guide me through this process.
Posts: 18 | From maryland | Registered: Mar 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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You've been given very good advice from people who have experience with this nasty disease and its equally as nasty co-infections.

I just wanted to put my two cents in here and give you a link to read about the Lyme controversy:

"Two Standards of Care":

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-two-standards-of-care-revisited.html

Btw - I know you are new to Lymenet, but 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.

To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posts: 8853 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
jory
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Hi Bonnie, thanks for the CDC test suggestions - excellent! I've taken a screenshot and put it on my facebook feed, it will do lots of good!

Jory

ps: I gave you credit for the post

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dal123
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Die, Die, Die. You remind me of so many people who keep arguing they didn't have Lyme , etc and suffered for it despite all the advice here. If you persist in denial it's your problem not ours. We have given you all the information and resources.
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TF
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I just watched some of Dr. H's 2017 presentation on lyme disease. He explained WHY so few lyme patients have positive IgGs.

He said that lyme destroys that part of the lymph nodes that makes IgG antibodies. Therefore, few lyme patients will have a positive IgG on the Western Blot.

If I heard it correctly, he said that only 1 in 100 lyme patients will have a positive IgG !!!

This is the first time in all my years of being in the lyme world that I heard this explanation of the lack of positive IgGs.

Dr. "H" 2017 Video Presentation:

https://www.youtube.com/watch?v=BZu0wEOFVM8

The statement about IgG is somewhere in the first 45 minutes of the video.

So, if anybody else is thinking of saving a little money by just ordering the IgG on the Igenex Western Blot, don't do it! It will RARELY be positive, especially if you have had lyme for some time.

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jory
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Fantastic, thanks for the video TF!
Posts: 288 | From Montreal, Canada | Registered: Mar 2017  |  IP: Logged | Report this post to a Moderator
TF
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This particular statement about why IgG is so often negative is found at minute 43:30.
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Lymetoo
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Great info. Thanks!

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

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Tincup
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Hey seeking,

I am glad you are in the medical section learning as much as possible.

My 2 cents....

Forget any tests. Save your money, energy and time. You already have enough for a LLMD to tell what is going on.

Plus, the LLMD will order the tests he/she wants or needs done anyway. They will also answer questions as to why they are ordering this or that, and if you want to pay for more you can add more tests on at that time.

I'd also consider researching Babesia and Bartonella because of your current symptoms.

Here is a list of TBD's that includes diagnostic info, symptoms lists and treatment info.

https://sites.google.com/site/marylandlyme/tick-borne-diseases

Good luck!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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seekinganswers505
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I just wanted to send a quick update as I never like to leave things floating.

Thank you everyone who posted giving advise.

I did end up getting my blood tested again. I was found to be CDC and Igenex positive on IgM and CDC negative but Igenex positive on IgG.

I'm currently on a waitlist for a LLMD but my doc is willing to treat until I get in because of the CDC positive.

You guys were right. It was better to test for IgM.

Thanks again for everything.

--------------------
Seeking Assistance

Posts: 19 | From Southern Tier New York | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
   

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