posted
So... I have been tired and had major joint pain for over a year now. I've had a swollen lymph node in my neck, twitch in my eye, etc. Been tested for lyme, lupus and a few other things and everything came back negative (no surprise). I can't believe what a secretive thing it is to not be able to see all the doctors dealing with lyme. And it seems that the ones that do, don't take insurance. I personally don't want to shell out a grand to a LLMD if I don't know for sure if that's what I have, but I don't even know where to start with what type of doctor can run all the tests I'll need to get this figured out. Any opinions?
Posts: 20 | From Northern VA | Registered: Aug 2011
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As for your question .. How important is your health to you??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome!
No one like to pay the big bucks. I don't blame them. But you might think of it this way....
You can piece-meal your health care, running from doctor to doctor to get this and that checked, waiting for results, more appointments, meds that don't work, etc.
You would be wasting a lot of time and a lot more money than what a couple LLMD visits would be.
Think of it this way too. A LLMD is a DOCTOR first, a LLMD second. They don't want you to have Lyme, not at all. And they check so many things to help decide if it is or isn't (as best they can). They are great at ruling out a lot of things others never bother to check.
The difference between a LLMD and many other doctors is that they care, they are very educated and are often the cream of the crop. They have to be, to deal with all they do to try to help us.
I went the piece-meal route for years on end. (No LLMD's back then). It cost me a ton of money and nearly killed me, not to mention I became totally disabled in the process.
posted
Thanks. I just got a new pcp and have an appt this week with him. I will talk to him about the tests. my health is important to me, but seriously-- if it's not lyme and something else.. then i'll be out all the money and back to square one. looking for another doctor who charges an arm and a leg for what they do and again not knowing if it is the right illness. this is so frustrating Posts: 20 | From Northern VA | Registered: Aug 2011
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Call Igenex now to get a free test kit. Ask for the test I posted above.
When you get the blood drawn and your dr signs it, then you send it in with a check. Do this early in the week so the blood does not sit around in a post office.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
maybe a better question for me to ask is: do you think that I can get diagnosed by a regular doctor? Then once I find out if it is the problem switch to an LLMD?
Posts: 20 | From Northern VA | Registered: Aug 2011
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posted
Hi khs majorette! I'm new here too. Haven't gotten my first test results back, but we've ruled everything else out except maybe fibromyalgia.
Based on my research so far, it looks like a lot of LLMDs are also good diagnosticians. Many of them think outside the box and are willing to dig for a cause rather than just treating symptoms. So even if you and I DON'T have lyme after all, they may be able to help find a cause.
Also, I've heard too many stories on here about false negatives on the ELISA test. It has about a 65% accuracy rate, so it's quite possible that you do have it.
Posts: 330 | From TN | Registered: Sep 2011
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posted
There's another caveat re: testing by a PCP. I don't know about other LLMDs, but mine sends blood out to a variety of different labs based upon their strengths. I trust the results from his hand-picked selection of laboratories than I would from Labcorps doing them all.
OTOH, you can ask your PCP to do a Lyme WB, and antibody titers for Bartonella, Babesia and Erlichia. If any one of them come back positive, you can proceed from there.
Good luck, Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
Lyme Disease is a MULTI-SYSTEM ILLNESS that can MIMIC a multitude of other illnesses such as: Arthritis, Rheumatoid Arthritis, Fibromyalgia, Raynaud�s Syndrome, Chronic Fatigue Syndrome, Interstitial Cystis, Multiple Sclerosis, Scleroderma, Lupus, ALS (Lou Gehrig�s Disease), early Alzheimers Disease, Crohn�s Disease, Menieres Syndrome, Sjogren�s Syndrome, Irritable Bowel Syndrome, Colitis, Psychiatric Disorders, Encephalitis, Sleep Disorder, Thyroid Disease, Autism, Bell�s Palsy, and more.
Lyme Disease is a CLINICAL DIAGNOSIS. This means that a doctor will look at the whole picture of your symptoms, history, and utilize labs as well.
Here is a symptom list:
Persistent swollen glands -Sore throat -Fevers -Sore soles, esp. in the AM -Joint pain -Joint swelling -Unexplained back pain -Stiffness of the joints or back -Muscle pain or cramps -Obvious muscle weakness -Twitching of the face or other muscles -Confusion, difficulty thinking -Difficulty with concentration, reading, problem absorbing new information -Word search, name block -Forgetfulness, poor short term memory, poor attention -Disorientation: getting lost, going to wrong places -Speech errors- wrong word, misspeaking -Mood swings, irritability, depression -Anxiety, panic attacks -Psychosis (hallucinations, delusions, paranoia, bipolar) -Tremor -Seizures -Headache -Light sensitivity -Sound sensitivity -Vision: double, blurry, floaters -Ear pain -Hearing: buzzing, ringing, decreased hearing -Increased motion sickness, vertigo, spinning -Off balance, �tippy� feeling -Lightheadedness, wooziness, unavoidable need to sit or lie -Tingling, numbness, burning or stabbing sensations, shooting pains, skin -hypersensitivity -Facial paralysis-Bell's Palsy -Dental pain -Neck creaks and cracks, stiffness, neck pain -Fatigue, tired, poor stamina -Insomnia, fractionated sleep, early awakening -Excessive night time sleep -Napping during the day -Unexplained weight gain -Unexplained weight loss -Unexplained hair loss -Pain in genital area -Unexplained menstrual irregularity -Unexplained milk production; breast pain -Irritable bladder or bladder dysfunction -Erectile dysfunction -Loss of libido -Queasy stomach or nausea -Heartburn, stomach pain -Constipation -Diarrhea -Low abdominal pain, cramps -Heart murmur or valve prolapse? -Heart palpitations or skips -�Heart block� on EKG -Chest wall pain or ribs sore -Head congestion -Breathlessness, �air hunger�, unexplained chronic cough -Night sweats -Exaggerated symptoms or worse hangover from alcohol -Symptom flares every 4 wks.
IF�you suspect you have a cavity in your tooth, who do you go to? Your dentist.
IF�you suspect you have had a heart attack, who do you go to? Your cardiologist.
IF�you suspect you are pregnant, who do you go to? Your OB/GYN
Why? Because these above doctors are specifically educated and trained to help assess and diagnose your health concern, and offer you their expertise in treating you. You would not want to waste your precious time, money, and most of all health, in seeing a doctor trained in a different field.
LLMDs are specialists in a very complex and devastating illness�Lyme Disease and other Tick-Borne infections. LLMDs can look at the whole picture of what is going on with you, diagnose you one way or the other. If it is Lyme, they can start treatment�the sooner the better.
Many of us on Lymenet have lost years of our lives, and thousands of dollars, going from doctor to doctor, while the Lyme and Coinfections are more deeply imbedding themselves in our bodies, making us sicker, and sicker.
That is why seeing an LLMD who is a member of ILADS (International Lyme and Associated Diseases Society) is your best option on the road to health. Visit their website and learn more: www.ilads.org
Best wishes.
Posts: 873 | From WA | Registered: Dec 2005
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posted
I agree with Lymetoo, if it were me and money was a problem, I would go to Igenex and get the #188 and #189 these are the Western Blot IgG and IgM.
Of all the Lyme tests I've had these are the only ones that came up positive....had them done by Quest then a year later by Igenex.
The Elisa is a waste of time and money.
All the information about the tests & forms is on their web site and I thought the prices were there but I couldn't find them today.
They will send you a kit, take the form to any Dr for signature go to any lab/Hosp to have blood drawn, they may charge a small fee then send off yourself. Results will come to your Dr.
When I did mine I had to provide credit card number but fortunately Medicare and my supplemental insurance covered the tests.
-------------------- I am not a Doctor and I never played one on TV, I'm just a lab rat with Lyme trying to rid myself of this horrible disease. Posts: 88 | From Florida | Registered: Apr 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
You'll probably need to see an LLMD anyways. If you want to see other specialists and continue to rule out other things, then by all means do that.
You may get steered in the wrong direction though and start to feel like your symptoms are all in your head.
After seeing 6 or so specialists, it starts to feel that way.
Good luck whatever you do.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
It would be a good idea to make an LLMD appointment NOW since it can take 6 months to get an appointment. You can always cancel later if the test comes back negative.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Really good thinking. Thanks! Posts: 20 | From Northern VA | Registered: Aug 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I agree with Lymetoo however, do not be surprised if you PCP refuses to sign the forms to order the Igenex test! Mine would NOT do it! I had to go see a LLNP to get that done.
Then 2 months ago I tried to get my daughter's Dr to order the Igenex test and again she refused saying she was not comfortable with ordering it... so we compromised and ordered the WB with Lapcorp.
Since she only had one band activated... they said she was negative. When I insisted that it's a significant band she told me and I quote "According to the Infectious Disease Dr we consulted, your daughter does NOT have Lyme Disease, therefore no action is needed. If you want treatment please stop by the office to pick up the lab results and consult with another doctor".
When I called the Pediatric LLMD in CT he said band 39 with a list of symptoms is enough for him to make the diagnosis. So while I understand your frustration about the money... I'm afraid the PCP will be utterly useless in helping you find the cause of your problem.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
don't use quest labs either. they're notorious for misleading or false reports.
and believe me, most doctors will tell you "oh there is no lyme in blah, blah, blah...."
if you accept fibro, which unfortunately a lot of people do, then you will only delay lyme treatment.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
You can also try getting a chiropractor to sign off on it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I agree with Tincup. I think it is best to see a knowledgeable doctor as soon as possible to confirm or rule out tick-borne diseases.
Yes first visits are expensive, but in the long run you will save time and money and avoid getting sicker.
Posts: 4682 | Registered: Oct 2000
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posted
I had 4 negetive lyme antibody tests and a negetive WB until I was tested by Igenx. Go see a LLMD. I had to pay $900 out of pocket for testing - It's the best investment I've made in years.
-------------------- I have Lyme - but it doesn't have me. Posts: 70 | From ohio | Registered: Sep 2011
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posted
I agree with Lymetoo, What price can you put on your health
Because of the poor quality of testing many people go years trying to find out what is wrong with them when all along it was Lyme disease and coinfections
It is great when you get a positive blood tests but many times Lyme disease must be determined by a clinical diagnosis from a skilled LLMD
My LLMD Takes insurance, But does not participate with my insurance
Most doctors mainstream doctors have no clue on how to treat this disease
Paying money out of pocket to see a quality LLMD was the best money I ever spent
Posts: 26 | From Northeast PA Allentown Lehigh Area | Registered: Jul 2010
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posted
I wasted a lot of years seeing other doctors and i should have seen an LLMD. Now I am disabled and getting worse by the minute.
I didn't know that Lyme was a possibility until recently. If you suspect Lyme, please don't waste time with a doctor who doesn't know the ins and outs of Lyme disease like an LLMD. The testing from Igenex doesn't always show the whole story. You can still test negative and have Lyme.
I just started seeing an LLMD. I am looking forward to getting better.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I asked my Chiropractor to order my IGX test. He was kind enough to oblige and then Dr. H interpreted the results via phone before suggesting I get to a LLMD/LLND.
If you think there is any chance its lyme, get to a doc. You'll be glad you did rather than wasting thousands of dollars years down the road.
posted
Ask your family, hold a bake off, throw a party and charge admission, start a facebook fundraising drive - "donate $3 for my medical bills". I'm not kidding. Do it. Start with testing if you want. I'd make an appointment with a LLMD in the meantime, and put down a deposit if you have to, because you could wait two months to get on the schedule!
$1000 sounds like a lot of money. But there is an old saying "penny wise and pound foolish". I bet most of the people on here would told you that if they added up their medical bills from all the doctors and specialists they ran around to seeing, and the TIME lost - which means in the meantime a degradation of your condition and diminished odds of treatment success...just do it already.
The alternative is that your pcp (wait two weeks for apointment) will send you to a rheumatologist (wait another two weeks for appointment) who will order bloodwork, and tell you to come back in six weeks. That's if you can get your rheumatologist or pcp to agree to even order the Lyme testing. Many won't, even if you have the classic rash. If you can't confirm ever having a rash or a tick attached for more than 36 hours, good luck getting someone to order a Lyme blood test. That sounds outrageous, but it's sadly true.
If you get a test, it's highly likely that the rheumatologist will tell you your tests are inconclusive or negative for Lyme. They've probably sent your tests out to a lab that is not the top choice for the already finicky Lyme tests. So you don't know how good an indicator that test is. And the tests are statistically not that great, even from the best labs. So there you have a dead end, and you still don't know if you have Lyme, and two months have gone by.
The Rheumatologist will probably tell that you have fibromyalgia, which is a pretty name for "we don't know why you're complaining". It's literally a bucket category for medically unexplainable pain. For which there is no cure, and some drug therapy, with side effects so considerable that most docs won't really medicate for fibromyalgia unless you're fairly close to being disabled. So you've got a name for a condition, but it doesn't do you much good. They'll probably tell you to exercise and see a psychologist for stress management.
Go see the Lyme doc. I bet they can tell you anything a rheumatologist can, if in fact you have some other problem like inflammatory arthritis, Lupus, etc.
We could do a quick survey here and ask how many people wish they had gone to see a LLMD earlier? How many people would have gone to see a LLMD and paid twice what they paid out of pocket, knowing what they do now?
Posts: 11 | From Washington, DC | Registered: Aug 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I wish I would have had at least one person tell me about Lyme Disease. I went 2 years undiagnosied. I was one of the ones that got a "Fibromylagia" diagnosis from a rheumatologist. I also went to a cardiologist, an endocrinologist, a gastro, and a few regular doctors. And oh yea, one trip to the psychiatrist. All to no avail.
Don't waste too much time and money seeing doctors that won't even consider Lyme Disease. If you even suspect it, go see a LLMD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I learned not to be so excited about the testing because it really is a clinical diagnosis. How a person responds to treatment reveals a lot.
Posts: 93 | From arizona | Registered: Oct 2010
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I am also glad you posted this... Although I have (according to my wonderful PCP) a dx. I have wondering about the. Cost of an LLMD. Partly because my own dr,does get even if she is not as experienced with the combinations and protocols. But at$500 just to meet her...not including any blood work or labs... And the protocols seem IMO, a crap shoot anyway... I wonder,at least in my case if I can keep going with my PCP.
But back to your question Majorrette, could you ask your PCP to do a challenge with abx? A month of azythromycin or any other abx you have taken before without problems... Most likely if what you are dealing with is Lyme,you will feel better than you have for a few days...and then you will feel worse than you have in your whole life, called a herx, and proof that the buggers are dying. Also if after the challenge you have her/him run a western blot it is possible that some bands will bloom and confirm the challenge.
For me for 20 years I noticed every time I went on abxfor something else....I felt achier than ever...but then I would feel better for a few months.
My wonderful PCP tests everyone for lyme with their annual exam, 2years ago she stopped bothering with elisa and just does western blot. This year (because of a month of prednisone that helped the buggers thrive). I had one band (41)which is enough for her to keep me on abx til I feel better. I love my doctor.
I hope this thread gives you some ideas to bring to your PCP.
Posts: 1728 | From USA | Registered: May 2011
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posted
i had my appt with my new pcp who was great on friday. I got a bunch of blood taken to test for some different things (western blot was done this time-- new test for me). he put me on a 9 day does of prednisone to see what pains that it takes care of, and he said he wasn't opposed to giving me a month of abx to see if it helped depending on what the tests show. I suppose we'll see how things shake out.
Posts: 20 | From Northern VA | Registered: Aug 2011
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posted
hulagrrl, do you have a specific dr you prefer? we aren't far from each other. you can pm me..
Posts: 20 | From Northern VA | Registered: Aug 2011
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I ve been chasing doctors for 2yrs. Specialist. You name them I ve been there.
Fibro. Second doctor said I had to admit I had fibro.
Changed p.cp after 18yrs as pcp said she couldn't treat the lyme only if I tested positive for lyme "again". 1st time I wasn't treated properly. 2nd pcp said he was taking fibro off dx. After 9 months of same tests..wasted money..he said well ya know they have been throwing around fibro.
I found this site. & found a great doctor. It is worth the money. If I knew about this site it would have saved me alot of money I wasted on chasing doctors. & all the tests..mri s emg s. P.t.
I researched my new doctor. & I am impressed with her, her knowledge of not only lyme. But her 36 yrs as a family medicine doctor.
I read an article of her research, knowledge etc & I found her on this site.
I wish I found this site awhile ago. Cuz all the other doctors made me worse..steriods did not work. That miracle drug made me sick.
Thank You Lymetoo for sending me. A list of doctors.
Posts: 16 | From Plymouth, Massachusetts | Registered: Jun 2011
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Made a great point about taking steroids when you possibly have lyme disease
Steroids suppress the Immune system and can allow lyme disease and Co infections to spread quickly
I met a person 10 Years ago who was put on a steroid Not knowing he was infected with Lyme disease and He life has never been the same
I am no doctor But please be careful taking steroids if you could have Lyme disease
Do some research on taking Steroids and Lyme disease
Posts: 26 | From Northeast PA Allentown Lehigh Area | Registered: Jul 2010
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I also thought though, steroids could be used to activate Lyme, so you would actually test positive. But I agree,you proceed cautiously.
Posts: 1728 | From USA | Registered: May 2011
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posted
My 2nd pcp put me on steriods. Did not help. Made me worse.
Ortho gave me cortisone shot on the side of my knee. & I believe it did spread. Instead of the pain on the side of my knee it went around my knee cap.
I still tested neg for lyme.
This is scary how doctors treat you for symptoms. & cause more issue.
Well my physical therapist said I was his 1st failure of 30yrs I told him I wasnt his failure. p. t. Stated that the doctors need to get a dx.
Doctor s kept passing me around. If it want for this site I still would be chasing them around. Thank God for my son. He said it started with lyme has to be lyme. Kept telling me to go to another doctor. I did test positive in july 09. & had the 10 spots mostly on left side.
Its been crazy.
Posts: 16 | From Plymouth, Massachusetts | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I hope you have not started taking the steroids. Here is a quote from Burrascano:
"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." (p. 12)
The one person I know who had steroids prior to getting a lyme diagnosis is having a difficult time getting well.
This is an example of how a non-lyme literate doctor can really damage a patient due to their lack of knowledge.
Although you may temporarily feel better from taking the steroids, you will then notice that your illness gets much worse later, if it is lyme.
I would never take a chance and take steroids if there is any possibility that I had lyme disease. That is based on the Burrascano warning. He knows what he is talking about. He was the most famous, most successful lyme doctor in the world for many years.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I have some quick over the phone results: follow up appt is next week so I can get more info... but here is what I've got for now (sorry if my terminology/grammar is wrong.. new at this).
liver/kidney/thyroid - normal anti cct for RA - normal c reactive was positive for inflammation white blood cell count went up again to 12.4 from 12.1 from 11.8 from 11.0. (previous tests) sed rate was normal vit d is low (not sure of the number) - giving me a perscription for 50k units twice a week I believe.
and last but not least: for the western blot. they said that the igg was present but doesn't show active. p66 and p41 antibodies. which I'm pretty sure means that the cdc doesn't say I have lyme but Igenex does. I will find out more next week at my follow up appt, but I think he may start me on antibiotics.
Posts: 20 | From Northern VA | Registered: Aug 2011
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I would definitely go see an LLMD at this point. The good news is that you are in an area with lots of them! I have heard there is a really great one in Maryland.
It sounds like your doc is open to giving you some antibiotics to start with, but you need to get tested for co-infections like Bartonella and Babesia, especially since you are positive for Lyme.
Also, you probably will need more than a few weeks of antibiotics, at least I would want that if I were you!
Posts: 330 | From TN | Registered: Sep 2011
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posted
so is it definitely positive? that is the whole debate. i saw on http://www.anapsid.org/lyme/wb.html that i'd be positive through igenex if i had two @ bands, but 66 isn't an @ band... so would i not be positive? this is so frustrating. lyme is such a BUGGER!
Posts: 20 | From Northern VA | Registered: Aug 2011
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posted
Hm, I don't know. Maybe one of the mods will know. I believe 41 is an important one, though!
Posts: 330 | From TN | Registered: Sep 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
See this explanation of the Western Blot by a famous lyme doctor:
This doctor says band 41 is the most common lyme band and 66 is the second most common lyme band. He considers 66 a significant lyme band. Please read the entire discussion by the doctor.
HOWEVER, if your test was done by Quest or LabCorp, just know that they rarely report positive results, either on the bands or as an overall result.
If you get tested by Igenex, you are very likely to have a large number of positive and equivocal (slightly positive) bands, thus giving you your diagnosis.
Sorry to say the Quest and LabCorp Western Blot tests are almost useless. First of all, they do not report all of the bands. As I recall, they report less than half of the bands that are tested for. They will NOT give you the results on the other bands, even if your doctor requests them. So, that being the case, you can see how difficult it will be to get any positive bands. The bands they report are not even the most important bands for lyme. The decision was made years ago to eliminate the most important lyme bands.
That's why all the lyme doctors shun their tests and use Igenex instead. If you really want to know all of your positive bands, you need tested by Igenex.
Also, be sure you get a copy of your Western Blot test results when you go to see your doctor. Keep it for your records. When you go to a lyme doctor, they will want to see it for what it is worth.
Posts: 9931 | From Maryland | Registered: Dec 2007
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