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» LymeNet Flash » Questions and Discussion » Medical Questions » Suspecting Lyme

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Author Topic: Suspecting Lyme
spiffy
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Hi. New here, looking for insight and recommendations for moving forward. I'll just post bullets below.

55 years old, live in a large wooded lot in New England, in the woods all the time, hike in the woods often have pulled ticks crawling on me off almost daily this time of year (and the 2 dogs) have had ticks embedded 1-2 times in the last 2-4 years.

Never saw circular rash.

Not feeling well the last 15 months or so.

Symptoms in order of prevalence:

Fatigue, weakness in legs primarily, tired feeling, nap almost daily now. Can often power through it by making myself exercise/hike what ever, but maybe 10% of the time it brings me down. Comes and goes, but is present maybe 80% of the time.

Mild nausea. Mostly early in 2016, not so much now. Few days on, week or so off, then it would come back. Appetite and intestinal functions all normal. "Flu-ey" feeling.

Period of earaches left side, jaw pain left side, some facial droop and redness during this period.

Dull headaches often.

Retired in January, started hiking 1-2 miles almost every day and experiencing right knee pain some days. Arthritis like, not inflamed by loading the knee. Often felt most after periods of sitting still. "Tight" knee for a while. However have played racquetball for 40 years, still play 2 times a week, knee does not hurt when playing (but weakness is present, don't have 1/2 the energy that I used to)

Some periods of dizziness and occasionally possible mental confusion, speaking issues.

Some periods of temp regulation, chills, hot, etc.

Most recently, left shoulder (I'm right handed) tingling when sitting still, one day felt persistent pain in it.

Ok, that is all I can think of for. Have been to my primary care doc 4-6 times over the last year, he has nothing to offer. Agreed to a lyme test, came back neg. Have had full blood panels done many times, everything normal.

So...

As I read all of the lyme symptoms I become very suspect. I am not miserable, but just seem tired all the time, and virtually every other thing seems to be possible lyme. Where I live, how much time I spend outside, etc.

My wife (a nurse) suggested asking doc to put me on a Doxy Rx for a few weeks ??? Not sure if he would or not.

I would feel better if I saw a Lyme specialist. How best to find one in my area? I am also a cancer survivor and as such, I don't like to ignore anything.

And tips/advice appreciated.... lots of travel planned this year, I want my energy back!!!

Posts: 15 | From Dunstable MA | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
TF
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You can check with the lyme support groups in your area. See Support Groups on the left side of the page.

Check nearby states for groups also. In addition, folks will come along with names of lyme doctors.

You really can't rely on the lyme tests, especially Quest or LabCorp. So, get to a good lyme specialist and get his opinion. Also, such a specialist will order blood tests from labs that specialize in tick-borne diseases.

These are often expensive, but they are much better than the labs covered by insurance. Dr. Burrascano, foremost lyme pioneer and the most successful lyme doc on the planet when he was practicing, always recommended Igenex in California. Testing there will cost you $650 or more out of pocket.

Because the tests are not really reliable (a negative test is unreliable--can easily be wrong--but a positive test means you have it), you want to get to the best lyme doctor you can afford. They generally don't take insurance. The more expertise the doc has, the better his diagnosis.

Read what Burrascano says about how lyme is diagnosed:


"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. . . .

Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (p. 7)

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

As the last sentence of the quote says, the ultimate "test" is to give the patient a trial course of lyme treatment (high-dose antibiotics) and see what the reaction is.

I strongly suggest you read and STUDY this entire document. It will educate you on lyme and its coinfections.

Then, when you see a lyme specialist, you will understand more of what he/she is saying. Also, you will be able to evaluate the treatment the doctor gives you. Just compare it to what Burrascano says good treatment looks like.

Welcome to LymeNet! We will help you here all we can.

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Lymetoo
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Welcome .. I would definitely make an appointment with an LLMD . You can ask for help in finding one here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=forum;f=2;hardset=0;start_point=0;DaysPrune=1000

Most people do NOT have the benefit of a rash to tell them they have been bitten. So do not rely on that.

Here is a link to more info on Lyme and its Coinfections:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

You can get the basic Western Blot from Igenex for about $250.

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

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TF
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As Lymetoo said above, the lyme test alone is $250 from Igenex. But, a good lyme specialist, knowing the lyme test is not totally reliable, will test you not only for lyme but also for babesiosis and bartonella. These are the 2 most common lyme coinfections.

They call them "the big 3." Nearly all ticks that have lyme on the east coast also have the other 2 infections.

So, if you are positive for any of the 3 infections, you most likely have lyme PLUS whatever coinfection you tested positive for. In fact, you most likely have all of the big 3.

That testing is at least $650.

I would not be satisfied with any other testing if you really want to get to the bottom of this thing.

Of all of the hundreds of people I know who have/had lyme here in the east, all had babesiosis and bartonella also EXCEPT ONE PERSON.

So, I hope you see that if you test for all 3, you have the best chance of getting at least one positive. Then, you have your diagnosis and you can move on to treatment.

Lyme tests (which are really indirect tests; they test to see if you have any lyme antibodies in your blood, indicating exposure to lyme) can often miss half of all cases of lyme disease. There are so many reasons for this that the lyme docs just automatically test for all 3 diseases if the patient can afford it.

Lyme has many, many ways of avoiding detection by the immune system, so the lyme antibody tests can only be trusted if they are positive. A negative really means nothing.

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hopingandpraying
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Welcome to Lymenet! PM sent for MA.

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

Unfortunately, LLMDs are far and few between. You need to go where they are.

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/MassachusettsLyme/info

Maybe they can help.

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

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

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.

Also 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

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spiffy
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Thanks for all the great tips. I have been doing LOTS of reading and research. Here's where I am now:

I am seeking a LLMD and requested a list via the ILADS site, no reply yet.

I called the Rhumatoid arthritis department at Mass General in Boston as they had a lyme specialist listed and I have an pt ID there already. She said that unless I had been diagnosed by my PCH with RA, AND had a pos Western blot test, she would not see me, but would refer my case to other departments. So I am starting to get it; much of the established practices/medicine wants that simple black/white test or nothing.

I also called a couple wellness centers who said they could diagnose lyme with EAV testing. Did some reading on that (and I'm an engineer); not impressed. And most of them are not docs and can't/won't prescribe antibiotics, only homeopathic stuff.

Looked at the igenex site and really think I want those tests done and am willing to pay $$ for it. Problem is I don't think that my PCH would spend much time studying the site and make a good rec on what tests to get (looked at their price list, LOTS of tests, recommendations here?).

But I think that the ideal case would be to find a "real" LLMD that will/can order and interpret the igenex test and will/can prescribe and treat with antibiotics if test are positive.

So I'll keep reading, researching. If I don't get a response or an LLMD from ILAD, I may go back to my PCH and talk to him some more. Been seeing him for years, great guy, but a "generalist" and he never even considered Lyme over the past 1-2 years, so I think his experience with it is very, very limited. He does, however, always seem willing to refer me out to specialty areas if I request that.

Thanks again for all the support....

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TF
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Requesting a list from ILADS is a bad idea. Did someone here tell you to do that? They just send out the name of any doc who has registered with them saying they treat lyme. So, the doc may have never treated a lyme patient in his life. Doctors take advantage of the ILADS referral service to get themselves some patients!

See Support Groups on the left side of the page. Contact the ones near you. Contact as many as you can to find out who is getting people well.

If you don't take this advice, you will regret it.

I have been helping people find good lyme doctors for 13 years. I know what ILADS does. They do NOT know these doctors.

So, they will send you the names that are closest to your location. Your choice.

AND, your primary care doctor does NOT know who is a good lyme specialist. Why come to this site and not use its resources?

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dal123
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Also there are Drs who do diagnose according to ILADS, Attend all the conventions, etc. and are good at diagnosing Lyme using IGENEX tests which are the gold standards but do NOT treat using ILADS and Burrascano guidelines.

This is a major deception and misrepresentations. Lots of people in Houston have been duped by such a doctor, who's skilled in diagnostics but doesn't follow through with appropriate and consistent treatment using ILADS guidelines.

This dr is running scared of the TSBME. Only good for the visit to diagnose and run from there.

[ 05-10-2017, 12:07 AM: Message edited by: Lymetoo ]

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Lymetoo
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quote:
Originally posted by TF:
Requesting a list from ILADS is a bad idea.

-
Agree .. Go to Seeking a Doctor here and someone will help you find an LLMD.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=forum;f=2;hardset=0;start_point=0;DaysPrune=1000

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

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Robin123
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People here will have excellent Lyme doctor referrals for you.
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spiffy
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I got a response back from ILADs, and one of them was a doc near me that I had already found searching online and was considering calling. But thank you for the cautionary notes about ILADs.

That being said, I was wondering if the group had suggestions on what important questions to ask when first evaluating a LLMD. I have my own ideas, but I will keep them for now. I do however think that they fall into two categories, Diagnosis, and Treatment (as I am only suspecting that I have it now, but it would sure explain a lot). Comments? Suggestions??

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dal123
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Just don't keep going in circles. Time to double down and get IGENEX tested by a competent highly recommended LLMD. I have seen too many intelligent engineer types like you run around researching a lot while the disease takes hold and run out of time time to find such a dr, etc. too much arguing, etc on "why nots". Do it and move forward.
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TF
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It's not about asking the doctor questions. It's about finding out who is the absolute best lyme doctor you can possibly afford and who is still taking new patients.

The first appointment to see these specialists is very expensive. They don't take insurance. You pay out of pocket. It is also at least an hour long as the doctor interviews you about symptoms, etc. to come up with the possible diagnosis and what tests to order for you.

There are very few lyme doctors who know enough to get a person well from lyme disease--very few. The one closest to you has a 1 year wait for a new patient. (Your appointment will be in May 2018.) That's how you can tell the doc is in demand.

So, the research you do is talking to as many support groups as you can to find out which doctors are curing people of lyme, studying the doctor's web page (Is it all about lyme disease? Does he treat just lyme?--sign of a real specialist), and finding out if the doc is accepting new patients.

If he treats all medical conditions or all infectious diseases, he isn't specializing in lyme, so he has no way to develop the expertise that a doc treating lyme all day can develop.

Does he have any publications regarding lyme? Does he speak at lyme conferences? etc.

Here is the website of a real specialist:

http://gingersavely.com/

She is the second best lyme specialist in the eastern U.S. The best one, Dr. H. isn't taking new patients and hasn't for about 3 years.

This doc just reopened her practice to new patients. For the last 2 1/2 years, she wasn't taking new patients either.

That's how you tell if a doctor is good. Are they lining up to see the doc?

This doc is highly recommended by major state lyme disease organizations. She has published many papers on lyme with the top people including Burrascano.

This is how you research a lyme doctor. I suggest you start the process now to try to get an appointment with her. Click on "Appt" and follow the instructions.

This doc has been treating lyme at least 15 years--exclusively lyme. That's what you want. Everyone raves about her. That's what you want.

Read some of her publications. Hope that she doesn't close her practice to new people again.

You only have to appear in person every 6 months. The other months, you can do telephone appointments.

This is a fabulous opportunity to see a top lyme doc. So, you are fortunate.

When a doc like this gives you her opinion of what is going on with you, it is worth something. If she decides to try a trial of antibiotics for lyme on you, then you will see your body's reaction and you will both know the answer to the question "Is this lyme."

This woman had lyme as did her 2 young daughters. She speaks in Europe at lyme conferences and is one of the very few who treat Morgellon's--an unusual presentation of lyme disease. She wrote the only book on Morgellon's.

So, study her credentials and ask to become her patient. It's not an issue of you questioning the doc, the issue is you finding the absolute best doc who will see you within a reasonable time.

You will get an appointment with this doc for late June or early July most likely. This can change as people find out that she is now accepting new patients again.

And, forget all major medical institutions. You have to ask the lyme community for good doctors. That's why folks come here.

The more lyme symptoms you have, the better the chance you have lyme. So, make the most detailed list of your symptoms that you can. Take that list to your first appointment with a real lyme specialist. That is what will help the doctor figure out what is going on with you.

Use the list of symptoms in the Guidelines, pages 9-10. Don't leave out a description of how well your brain is working.

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spiffy
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Thanks for that very thorough response TF.
Posts: 15 | From Dunstable MA | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
HW88
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My first LLMD was from ILADS response. She really didn't know what she was doing. She didn't even know how to check for co-infections..... TF gave me great recommendations.
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spiffy
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Update on this. My symptoms have gotten much worse, especially leg weakness. I can't "power through" it anymore and can only walk slowly.

I sometimes feel like I may fall down. Still sporadic other joint pains, tingling in the shoulder, etc.

I found a local LLMD and got the first avail appt.: Oct 26th. I don't think I can last that long, so I have an appointment with my PCP tomorrow morning and am going to ask for a 30 day course of doxy.

I will bring with me some papers from CDC, John's Hopkins, etc. showing that it is the recommended starting treatment even if no pos test results. (I got a neg ELISA/Blot test least year). Doc is a pretty good guy and probably a good chance he will prescribe the doxy.

Other thoughts recommendations? I have read up on possible side effects and Herx reaction. If I get on Doxy and Herx, is that a good sign? Have others here herx'ed if so, after how long on what?

This is really getting scary, I have never felt this weakness before, I feel like a 90 year old man sometimes.

Usually worse in the morning, and gets better in the latter part of the day. At least that is what the last week has been like,

Thanks for any insights...

[ 07-17-2017, 01:05 PM: Message edited by: spiffy ]

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hopingandpraying
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PM sent with some names for NH.

When calling for an appointment, ask if they have any cancellations or a waiting list (call every day if you have to!). Patients have been able to get in to sooner by doing this.

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.

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Angie b
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.
.
The leg weakness is the atrophy setting in

I don't know what bacteria exactly, but I know they do this

It's happening to me
What other symptoms do you have ?
.
.
.

Trust me I've been in that spot waiting months to see a LLMD
It's scary
When you're getting worse week by week and no where to go
And ER doesn't want to see you anymore

It will get better
.
.I don't know if you know but sometimes you can see the nurse practitioner in the office of an LLMD and they are not as busy and just as good but yeah check it out
.

--------------------
.
.
Hi there thanks for any info
Or if I could help in any way
Let me know

Angie

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TF
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Get a copy of the lyme test that your doctor did on you. Take that to your first lyme doctor appointment.

Also, post it here. The reason? Often a doctor who does not specialize in lyme will tell a person "Your test was negative" but when we or a lyme specialist look at it, it isn't negative at all!!!

So true! So, get a copy and type your results here for us to tell you if there is evidence of lyme.

The overall result of the Western Blot test may be a summary word like "negative" but lyme docs look at the specific bands on the test and if certain ones are positive or indeterminate, that is evidence of lyme. I would not expect your pcp to know that.

Also, there is a lyme doc in Maryland, not far from D.C., who can see you right away if you want to consider coming here for lyme treatment. He will do telephone appointments also, so you only have to appear in person once every 3 months.

Let me know if you want the name.

I would call more lyme specialists if I were you and see if one can see you sooner. Plus, keep calling the one that gave you the Oct. appointment and ask if they happen to have any cancellations. Call every few days.

Having to wait until October is like being consigned to hell until October. At least, that is what it was like for me when I was ill. So, if there is some lesser doctor (perhaps one that is just lyme friendly--is willing to treat people for lyme for long periods) start out with him.

You always have to wait for the best doctors. So, go to a lesser doctor who can see you quickly and work your way up to the doc you really want.

That or fly here. Think about it. Do more research. See what you find.

We will help you here all we can.

Regarding your questions, if you start doxy and herx on day 2 or 3, that is proof that you have lyme. A herx can be just total exhaustion or it can be a worsening of your current symptoms or new symptoms that pop up.

Be careful with doxy. Do NOT go out in the sun, and do not put your arm out the window when driving. You can get a doxy burn on your hands very easily in the summer. It is a chemical burn.

You can get the burn through the windshield, so be careful, especially with your hands.

Take the doxy in the middle of a full meal. Otherwise, it will upset your stomach and eventually you will be vomiting and have to stop treatment.

It doesn't matter that you are instructed to take it on an empty stomach. All the lyme docs say to eat half a meal, take the doxy, then eat the other half of the meal.

And, don't lay down for at least 30 minutes afterwards or the doxy could come up in your throat and burn your throat badly. You don't want to experience it.

You don't want to experience the doxy burn either, so stay out of the sun. Take this very seriously.

Let us know what kind of a reaction you have to the doxy. You may have your proof of lyme very soon.

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Angie b
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And yes herxing is a good sign

I was on 4 pills x 100mg doxy a day for almost a month and felt no typical herx

And then last week a month later
I started feeling drunk and spacey and confused

The herx is different for everyone
.
.


I heard making sure you have bowel movements is super important
.
.
Lots of water aswell... .PH balanced alkaline water only
You don't want any chemicals in you

You can buy cases off Amazon sent to your front door
With 2 day shipping which is a life saver and totally worth it


.
.
If you need help with anything hit me up

Trust me I've been in your situation
Scary when no one will help or give you antibiotics or even don't think it's a infection at all


I hope you found a way to get those Antibiotics

[ 07-17-2017, 04:29 PM: Message edited by: Angie b ]

--------------------
.
.
Hi there thanks for any info
Or if I could help in any way
Let me know

Angie

Posts: 27 | From Monterey Bay California | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
Angie b
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Tf ...great info!

Didn't know that about the doxy burn

Wow

--------------------
.
.
Hi there thanks for any info
Or if I could help in any way
Let me know

Angie

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TF
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To educate yourself on this disease, read and study the Burrascano Lyme Treatment Guidelines found here:

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

Read "Diagnostic Hints" at the top of p. 7. See the last sentence which says:

"Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy."

This is my basis for saying that if you herx on the doxy, that is proof of lyme. Of course, if the dose of doxy is too low, you may not herx. A lyme specialist gives 200 mg twice per day, but regular doctors give just half of that.

Still, some of your symptoms could improve with the doxy. That would also be proof of lyme.

See also on page 7 "Western Blot" which will tell you the bands on the western blot test that are significant to a lyme specialist.

This document will teach you how to evaluate any lyme treatment you get. Many doctors treat lyme, but not many follow the Burrascano Guidelines anymore because the docs who do get persecuted so often by the state Medical Board.

I had undiagnosed lyme (and babesiosis and bartonella) for at least 10 years before a doctor figured out that it sounded like lyme and tested me for it. Still, I got well once I found a lyme specialist who followed the Burrascano protocol.

You really have to do a lot of research before going to a lyme specialist. You have to find out how they treat lyme. Do they test for and treat the coinfections, etc. I wasted over 2 years with docs who treated lyme but they ignored coinfections.

It was 2 wasted years of taking antibiotics!

Then, I switched to my Burrascano type doctor and he tested me for all coinfections at my first appointment. I had babesiosis and bartonella, just like nearly every single lyme patient.

Then, this doc treated me for all my diseases and I got well. That was over 12 years ago now. Then, I sent at least 5 of my friends to Burrascano type doctors and they also got well.

So, don't waste your time with a doc who won't do right. Many doctors treat lyme, but very few know enough to get a person well.

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 2 different antibiotics taken together 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 babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.

You must use Igenex for most of these tests--they are a tick-borne disease specialty 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. When he was practicing, they came from every country in the world to be treated by him.

Look at Burrascano's list of required supplements. Notice the symptoms that each treats. Try some of the supplements and see if they help your symptoms.

Nearly every lyme patient is deficient in magnesium. So, buy some of the Mag-Tab SR that he recommends and take it for a few weeks and see if you feel better. I buy that Mag online and it comes in a few days. Take the dosage Burrascano recommends.

If the doc you see does not do the important things Burrascano says are required to get well, then start looking for another doctor.

That's why I say to do a lot of research before going to your first lyme specialist. It will pay off. A lyme specialist is a doctor whose entire practice is lyme disease, or at least half of the practice is lyme disease.

That is how a doctor develops expertise in this difficult to cure disease.

A lyme specialist's website will be all about lyme disease. It should also tell you how the doc believes in treating lyme. If he believes in just using herbs, look for another doctor. If he believes in herbs and ozone or some such thing, keep looking. You want a doc who uses combos of antibiotics together.

Lyme can evade any one antibiotic. That is why you need at least 2 at once. (See "Combination Therapy" page 12). So,educate yourself. Then, you will make a better choice of a first lyme doctor.

See pages 9--10 which is a list of lyme symptoms. Make a list of all you have. Be very thorough. Give this list to your first lyme specialist. Lyme is diagnosed mainly on symptoms since the tests are not reliable (see top of p. 7), so your list of symptoms is the most valuable thing you are giving the doctor.

Look at the symptoms for babesiosis and bartonella also.

Study, study. It will pay off immeasurably.

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Angie b
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.
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Superb! Excellent information, TF !

.
.

Yes check for co- infections , bigtime !

I had coinfections I "never" read online associated.. with Lyme
.
.

"Rocky Mountain spotted fever"

And

ACA (acrodermatitis chronica atrophicans) -- Attacks your skin and nervous system

https://www.google.com/search?q=acrodermatitis+chronica+atrophicans&client=safari&hl=en-us&prmd=ivn&source=lnms&tbm=isch&sa=X&ved=0ahUKEwijs7eclpHVAhVhsVQKHRk1AXkQ_AUICSgB&biw=768& bih=905

.
.
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So I have... late stage Lyme disease plus 5- 6 coinfections
I was perfectly healthy before this happened
Doing workouts etc
Living healthy
Had no clue I was even sick or I was bit by a bug
Never had symptoms or no rash til one day
It all just hit me one day out of the blue
I've lost my life


Where I got all this, I have no friggin' clue
But I would've never know if I didn't check for co-infections [shake]
.
.
Regular doctors would never suspected any of this bacteria
They don't think Lyme is even here in California
I had been to 59 doctors and specialist before finally going to a LLMD (ilads)


And I even had stayed two weeks with a major university, well they ran many many test , saw so many specialist, neurologist, dermatologist , care wound specialist, critical pain management etc etc

...and still they came up with nothing and didn't think it was even a infection at all. How dare I ask for a Lyme test!!

.
.
I had no where to go literally, no ER, no primary, no specialist in town... no one wanted to see me

..... I'm Finally getting better immediately on the antibiotics

Thank god!
.

The pain is horrible with these bacterias
.
.its no joke ugh....to say the lest
.
.
.

[ 07-17-2017, 06:20 PM: Message edited by: Angie b ]

--------------------
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Hi there thanks for any info
Or if I could help in any way
Let me know

Angie

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spiffy
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Thanks again for all of the tips. I have read some of the Burrascano Guidelines, but will print them out and study them more.


My wife is a cardiac nurse by education and will come to my appt tomorrow, she is adamant that we will not leave with out a Doxy prescipt.


I have a 4 night reservation at an RV park at the beach this weekend that I have been looking forward to. Not the place to be with sunlight sensitivity and possibly herxing, so I may put off starting the doxy until after that... as long as I feel well.


I actually feel better today, and managed a 1.4 mile walk with our dogs in 92 degree heat. Could not have done that in the last 5-7 days.


Is it common that Lyme symptoms are triggered by exercise? I was helping a friend with a somewhat strenuous basement project all last week, and Sat and Sun were the worst days ever. I wonder about that.


TF, please PM me the name of that doc. Flying isn't out of the question for me. Southwest has some dirt cheap fares to BWI sometimes.


I called one of the docs that hopingandpraying had sent me in NH (thanks!) and they are booking in Jan 2018 now.


Thanks again all. The support here is very good. I am a cancer survivor 9 years clean this year, and I remember how valuable the support and information was in the cancer support forums.

[ 07-17-2017, 06:42 PM: Message edited by: spiffy ]

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Angie b
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.

.
Yes stress will bring out the Lyme


So enjoy that beach
It might be awhile , til you get to go to a beach again!!!
[Cool]
.

Keep it updated here, curious what happens
.
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--------------------
.
.
Hi there thanks for any info
Or if I could help in any way
Let me know

Angie

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TF
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Yes, lyme causes what is known as post-exertional malaise.

Also, start marking on the calendar "good day" "bad day" etc or rating each day on a scale of 1 to 10. Look for 4 week cycles of waxing and waning of symptoms. That is classic lyme.

If you want to do another "test" for lyme, drink some alcohol and see what happens. You should have exaggerated symptoms or worse hangover from just a little alcohol. Don't drink more than one drink! Alcohol is no good for lyme patients.

Work on your symptom list!!

I will send the doc's name now.

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hopingandpraying
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PM sent for MD & DC.
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spiffy
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Well that was interesting.


Met with my PCP today, didn't go as planned. Long story as short as I can make it, as soon as I mentioned "LLMD" he kind of went off and say (in my words, my paraphrase) that they were all cracks and if you went there no matter what, they would tell you have lyme and "put you on all kinds of antibiotics".


He said it was like taking your car to a brake shop, and they WILL sell you brakes for your car (not true in all cases).


He talk about "BS" labs that produce BS results just for Lyme.


So I started asking the questions. Specifically, why did he think they were BS? He said that there was only one test that should be used and that is the ELISA and Western Blot test.


I told him that the blot test was known to be inaccurate, high false negatives, and he said "BS".


He said he knew of IgeneX and they are just making money off of "the lyme business"


So then, this was interesting, I asked him, "so then you will only treat for Lyme if you get a positive Western Blot result?" and he kind of stammered and, quite frankly, I don't remember what he said next.


He went on about how I was taking all these symptoms and was trying to find ONE THING that explains them all, and was doing myself a disservice in doing that. I said that I was not convinced I had Lyme (or co-infections) but if I looked at all of the symptoms, and there are many, all *could* be explained by Lyme. He on the the other hand seems to want to treat one symptom at a time.


It wasn't contentious, voice raising, etc. All civil. He admitted that it was his opinion and that at the end of the day, I was going to make my decisions. When I told him I had a late Oct appt with an LLMD, he said "Oh ok, if we don't have your issues resolved by then, then go seem him"


He has been my doc for 10-12 yrs or so. Good guy, has healthy interests at heart, but I do question his methods/logic.


So here is where we left it. After expressing my frustration at not being able to find Lyme specialists in the "mainstream" health institutions around here, he said that Infectious disease specialists in the area are VERY familiar with Lyme and know how to diagnose and treat it.


So he gave me the name of an ID doc who he says knows Lyme very well and that I could probably get to see in 1-2 weeks. I agreed. Just booked an appt for 7/28.


He also gave me the name of a Neurologist who he says that I should see given my very infrequent, but startling imbalance issues, leg weakness and occasional word find/forming issues.


I agreed to see him also.


Just before I left, they took my blood pressure again as the first one was abnormally high, and it was high again. I have NEVER had high blood pressure.... one more unexplained symptom.!

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TF
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spiffy, we already know how your pcp would behave and we are not happy to hear it.

We were all sent to an ID doc and a neurologist. I went because I didn't know any better at the time. You know better because you found LymeNet and we have given you names of docs who will help you.

I can predict what will happen at the ID doc appointment and also at the neurologist because I went through all this as did many of us here.

It will be more of what you experienced with the pcp. This is a war if you haven't figured it out yet.

My advice is to not do the spinal tap that the neuro will want to order. It will not show lyme and it can give you the most horrendous headache for more than a month let alone if your spinal fluid keeps dripping out of the hole they made. If that happens, you will have to go back to the hospital for a "blood patch" in which they inject some of your blood into the hole to stop the continual escape of your spinal fluid.

And, the procedure itself is very unnerving. Hope they do it correctly.

Some people believe us when we tell them how they will be treated by ID docs and neurologists, and others don't. Your choice.

"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. " (p. 8 of Burrascano)

So, lyme is only found in the spinal fluid if the person has meningitis, which you don't have. And, even if you had meningitis, there is only a 13% chance that the lyme would show up in your spinal fluid.

As the quote says, if you don't have meningitis, lyme will rarely show up in your fluid.

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hopingandpraying
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Lyme Disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on medical history, symptoms, test results, etc.

Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Patients end up getting sicker.

Here is a link for you to read about "Two Standards of Care":

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

Read the "Lyme and Coinfections Symptom List"
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

You have been given very good advice and information here. You need to be evaluated by a Lyme-literate doctor. Non LLMDs have no clue about this horrible disease, so don't waste your time and money going to them!

Call the LLMDs' offices again to ask about cancellations and waiting lists for an earlier appointment. Patients have been able to get in sooner by doing this.

I sent you some names for CT.

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dal123
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Guy ain't going to listen with will keep going in circles w out getting onboard wit a real LLMD.
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spiffy
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Well I did see the IDSA as an interim to my late Oct appt with an LLMD. He ordered another blot test that he said was more thorough that just what the 2 Tier CDC test did. It was not IgeneXI don't recall the name. I can see my results in text on my patient portal and if I read it right, it came back negative. He did say that he would be willing to put me on a 30 day std dose of Doxy even with a neg test result. I will call his office tomorrow and see what they say.


I have an appt with a neurologist on Sept 11. Thanks TF for the heads up on the spinal tap. I will read up on that, and make sure I understand the Burrascano position on it completely. At this point, I think I would decline that if suggested.

My appt with an LLMD is Oct 26th. I am on their cancellation list, but I think I will call them this week just to touch base. My symptoms are much more consistent now.


So my question is this. I see that a lot of LLMDs diagnose Lyme but seeing what the "response" to ABX is. Is there any harm in trying a 30 day Doxy from the IDSA to see what the response is? I do recall him saying "well if you have lyme, a 30 day std dose will take care of it..." Well refuted here I know. But again, makes me wonder if it is worth trying just to see what the reaction is.

I am sure that the LLMD I am seeing would do that if they felt it was warranted. They do prescribe ABX, I checked on that already..


Thanks for all the inputs, I intend to do what is needed to resolve this....

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TF
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Post the exact results of the lyme test that you got. This is important!!!

Give us the name of the lab, everything. This is what can tell us if you have lyme or not, so post it right away so we can explain it to you.

Regarding your doxy question, see my two responses to you above dated July 17 in which I answered this question.

You will not get a high enough dose of doxy to herx in all likelihood because you are going to an IDSA doc. They only give 200 mg per day. ILADS says it takes 400 mg per day. So, this would be a lousy, useless experiment on your part. And, when you read all the dangers of taking doxy (that I explained to you above), why do that if you are not going to be able to continue treatment?

The lyme specialists I recommend say not to start antibiotics if you can't continue them until the lyme doc appointment.

The reason is that starting lyme treatment and stopping it does you no good.

If you do the doxy with this non-specialist, you are just likely to get a yeast infection and stomach upset (or maybe a burned esophagus) due to doxy and maybe even the doxy burn if you don't stay out of the sun. The doc will not know how to keep any of this from happening because he does NOT specialize in lyme. A lyme doc instructs you properly so none of that happens. Get it?

We know you just want to know if you have lyme. We know! Everybody new wants that. They just can't stop wanting to know that prior to going to a lyme specialist.

We hear this all the time. It takes a lot of patience to deal with you new folks who just want what you want even when we tell you the way it is.

So, post your lyme test results so we can tell you if there is any evidence of lyme disease.

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spiffy
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Frustrated. Have been trying to get Lyme test results from doc. Office staff keeps saying "there are no results, you tested negative". I told one girl, "so what, they justs hold the blood vial up to the light and say 'Negative' on this one"???? I want the DATA. I made a little bit of progress today.

I have access to my charts online, and today I was missing one of the tests. But the staff could see it when I called and they looked on their system.

Totally forgot that I was tested in 2010 for (on the charts) "BORRELIA BURGDORFERI AB (PT; SER; QN; )

Recent tests:

Oct 2016 "A Lyme" test they said, this is the one I can't see on the portal charts. See said they did Igg and IgM tests and they were negative. She read me ranges and measured numbers.


July 18 2017 "BABESIA MICROTI ABS, ANAPLAS PHAGO AB" She said again that they included Igg and IgM and they were also negative.

So here is where the frustration comes in. I am trying to get the raw data/bands from the Western Blot /Immunoblot tests and she says the because the Igg and IgM were "below threshold", that the Western Blots were not done. I thought that the Igg and IgM WERE the blot tests, no?


I have an appt with an LLMD in late Oct and am just trying to collect as much history and test data as I can. I can drive to these doc/lab office and sign for copies of everything, but they say there is no blot data there.

Can someone enlighten me in the prelim Igg and IgM tests? From what I have read so far, they are the blot tests??

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Bartenderbonnie
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Dear spiffy,

Please reread TF's posts. Best advice.

Your immune system produces antibodies to invaders.
Lyme attacks your immune system and renders its disfunctional.

Western blot, tests for antibodies of Lyme, not the bacteria itself. If you have a compromised immune system, your body will not produce all antibodies.

This is why Lyme warriors are BEGGING for new testing.

IDSA doc's will not treat unless you have 5 reactive bands on western blot. And then they will only prescripe a 28 day course of antiboitics and declare you cured.

It's interesting you state that your IDSA doc will treat you with negative test. Will you please let us know if this comes to fruition ?

There's much you can do while waiting for your LLMD.

Watch your finances, start saving for LLMD and treatments.
Start Lyme diet:
No sugar, dairy, flour, wheat, processed meats or foods, alcohol, fruit juices, pork, or vinegar.
Add lots of wild caught fish, free range beef, chicken and turkey.
Add lots of organic vegetables.

You could add supplements but most LLMD's have their own protocol of what they want you to take.

You need to sleep and rest and keep stress levels low.

Expect to be in treatment atleast 1 year, probably longer.
(nobody told me this, sure wish they did.)

Also, keep fighting for your health. Collect and save all data of all tests to show to LLMD. This could save you money. You will get answers and you will get better, but not until you see a professional and knowledgable Tick Borne Infection Doctor (LLMD.)

Sorry you are sufferring.
Welcome to our world friend.

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Mashieniblick
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Spiffy, I am new here like you. I had the exact same experience as you. I went to regular doc waiting for my LLMD appt.

My regular doctor said LLMD's are quacks. She kind of said "Fine, I'll do a Western Blot". They called 2 days later and said it was negative. I called over and over and over to try to get the results... they would not hand them over.

I just had my first appt with LLMD about a month ago. My Igenex test took 3.5 weeks to come back. It was interpreted as showing positive exposure to Borrelia even though I did not have enough bands for CDC surveillance.

One month on antibiotics now and my symptoms have greatly improved.

My point- listen to TF and the others here. I was skeptical at first too, but I am glad I followed through and got an appt with LLMD even though it was $1,200. I wish I hadn't wasted a few hundred dollars on the regular doc and an eye doc she sent me to.

Stay tough less than 2 months to go for you. Hit me up if you have any questions

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dal123
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Listen to these people here! They are pros. Not the Drs you have been consulting with and sending you in circles telling you lies, etc. Get to a real LLMD and stay with that !
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spiffy
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Thanks for the tips. I was aware that the tests only detect the antigens/immune system responses.

Still looking for an answer to my question about IGG and IGM though. I am going to call the lab(s) back again this week depending.

Are these tests immunoblot tests that produce the detectable amounts of antigens (if present)? The lab said "your IGG and IGM came back negative so they didn't do western blot". That makes no sense to me.

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TF
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Lyme specialists will order a Western Blot since it is the preferred test for lyme.

"In Lyme Borreliosis, western blot is the preferred serologic test." (p. 5 of Burrascano)

However, non-lyme specialists like you are dealing with will follow the IDSA instruction to order an ELISA or EIA and, if it is positive, then the lab is to do a Western Blot on the blood sample.

So, based on what you said above, all you got was the ELISA screening test which will not show any bands. Only the Western Blot shows band information.

"The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots"

and

"Western blots are reported by showing which bands are reactive." (p. 7 of Burrascano)

This is what routinely happens until a person goes to a lyme doctor who knows to skip the junky ELISA. Non-lyme specialists are going to adhere to the IDSA rules nearly all the time. You can't get a Western Blot out of them unless you test positive on the ELISA first.

This link explains the ELISA, a screening test that produces just a "positive" or "negative" result on IgG and IgM.

http://www.healthline.com/health/elisa#preparation3

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spiffy
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Thanks for that. I see now that ELISA can be used to test for IgG and IgM and that is what the lab probably meant. My expectation is to get the iGenex test when I see the LLMD in Oct.
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Brussels
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Poor you... you lost all this time and all you got was just an ELISA test??! [Frown]

And how was the infectious disease doctor?

And the neurologist?

Have you been to the cardiologist?

To the rheumatologist?

Well, that has been the circular path for most of us.

We just keep fueling the useless system, giving them credit, paying them money, for a big NOTHING.

Anyway, I think you can't listen to all of us that have been in your shoes.

You gotta go through all that crap to one day believe... I also did that.

It is so absurd what's going on, but you gotta go through it all, not skipping any step, to see how useless this whole medical system is: a perfect combination of insurance + doctors + pharma!

The patient's health is the least important: he's only the money provider!

If you are a practical engineer, that likes things done, finished, buy Buhner's book and start treating on your own.

You WON'T probably get positive results for ALL infections that you could have.

If you are lucky to get any positive results after months, or who knows, a year, well, that will be JUST the very starting point - from there on, you got to find the right treatment.

Then new tests, to see if it worked. If not, or if tests are inconclusive, you got to continue treating, anyway.

I would simply take it easy on these tests.

While you look for help (it may take time, it seems...), just start treating yourself with herbs or rife, or whatever therapy you find fits you.

Or find a naturopathic skillful dr who will be glad to help.

If you wait for external help, you may wait a very long time.

Finding a good doctor is not a must, but it is a BIG help, specially in the beginning.

You ignored EAV, but with that, you could already have some idea, believe it or not.

I used EAV more than 20 years ago, and it did catch some stuff I did not know (like some food allergies).

Today, there are much more sophisticated devices doing analysis, with so many lyme coinfection frequencies inside it.

You don't need to take their treatment, if you feel it's not correct. But at least, it could be a starting point.

Connie Strassman, who wrote a couple of books about lyme or health related topics, did use Zyto to get an idea what she still needed to treat.

She's fully healed, as far as I know. Drugs did not heal her, but Zyto and homeopathy with biophotons did the job.

anyway, don't take my advice.
I'm off lyme treatment for the last 8 years.

We all went through that circular path you are going through.

I even got a positive Westernblot, but guess what?

I received NO treatment for that positive exam!!!

there are zillions of reasons for them not to treat you. The guy told me: you already got 2 weeks doxy for your EM rash, so you are cured. It's just the exam that still shows a positive!

Posts: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
spiffy
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Well I FINALLY had my appt with my LLMD (Thanks for the recommendation NANCY2). Was really nice to speak to someone who understood. I brought all of my previous lab data and medical history.

About a month ago, I saw a neurologist at the recommendation of my PCP, for leg weakness and cognitive things.

He recommended an MRI on my lower back, I had them in '06 and '09 and have a herniated disc and others near it bulging. The MRI report was not good, my lower spine is basically collapsing/degenerating and pressure on the leg nerves is "moderate to severe"

The neurologist wouldn't go so far as to say that was the cause of the leg weakness, but it could be. I am on the fence about that.

I have other nerve related things going on related to that that I have learned to live with, but the weakness is new. Although it might be a "perceived" weakness.

The LLMD also noted that the Lyme test that the IDS did, in fact, included a western blot and it found 3 bands positive in IGM and 1 in IGG, but, of course "negative".

They drew a lot of blood, some will go to a local lab and some to iGenx. I was given the option of starting Doxy or now or after the labs came back. I decided to start now as it was agreed my response to it would provide another piece of information for the diagnosis.

I will start on Probiotics as well as Serrapetase. I was told to take Magnesium supplements and B-12, but I had already started taking that a few weeks ago based on what I read.

I also had seen my oncologist just a week or two earlier who, when I told him about the elevated ANA, kind of perked up and ordered some extra tests.

He, and the LLMD recommended a head MRI based on some pain symptoms focused on the left side of my head for the last 1+ year, and the LLMD is ordering it.

So it will be interesting to see what the blood tests show and if the supplements help any. I am not miserable, but things are not getting better and I just hate not having the energy to do stuff!!

(breaking up the post for easier reading for many here)

[ 10-27-2017, 03:35 PM: Message edited by: Robin123 ]

Posts: 15 | From Dunstable MA | Registered: May 2017  |  IP: Logged | Report this post to a Moderator
Robin123
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Thanks for checking in - just curious - what are the positive band numbers that you got?
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Mashieniblick
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I will also be curious to see what bands come back on your Igenex vs. LC/Quest.

Be prepared to wait. Mine took 3.5 weeks to come back. Sucks when you are suffering and want answers.

Posts: 61 | From Lees Summit, MO | Registered: Jun 2017  |  IP: Logged | Report this post to a Moderator
Mashieniblick
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Update Spiffy?
Posts: 61 | From Lees Summit, MO | Registered: Jun 2017  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Spiffy hasn't posted since October. It would be interesting to hear how he is doing.

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

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HW88
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Would love to know also. The run around is horrible. I hope he is doing better and on treatment.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
   

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