Aa
Aa
A
A
A
Close
Avatar universal

Could it be Lyme?

Hi all,

I have been having strange symptoms for quite some time now, and I'm wondering if it could be Lyme-related.

I'm unsure if they are related at all, but I have been getting strange skin rashes for about 3 years now. They usually flare up once or twice a year and subside in about 10 days. They're always diagnosed as allergies, but I recently had allergy testing and was only reactive with typical outdoor things (pollen, grass, etc).

In February, I started experiencing intense lower back pain and pain in the left leg, which eventually spread to my left arm and right leg, but it is still worst in the left leg. It feels like nerve pains, though recently my left knee has been achey and sore, and my shoulders have also been getting in on that action, though less frequently. I occasionally have nerve pain on the left side of my face, as well. I experience strange parasthesias -- hot/cold sensations, feeling like water is running down my leg.

I had a nerve conduction test that showed nerve damage in the left leg and left arm, and an MRI that was normal excerpt for a single lesion. I was worked up for MS, but given that there was only the single lesion, the doctor recommended I wait to be treated and come back in a few months.

I had a Lyme test done back in March, but I'm not really familiar with the tests for this. This is what the results looked like:

Lyme Disease, EIA W/RFL WB = .77 (negative)
Lyme Disease AB (IGG), WB = Negative, only band 41 was reactive.

Any thoughts?
27 Responses
Sort by: Helpful Oldest Newest
Avatar universal
BIG OOPS!  I posted to the wrong thread. I can't delete it, I'm sorry,
Helpful - 0
Avatar universal
Elleon,

Reading your story is like reading hundreds of others who have or suspected Lyme and got the same treatment----with small variations in symptoms.

First let me say---- none of us here are doctors. But many of us have been in your shoes and have gone on to devote much time to trying to help others wade through this morass of mis- and dis-information. And we certainly can't say WITH CERTAINTY  that you do have Lyme or one of it's co-infections. But your experiences and symptoms are so similar to what many of us have had to endure.

I'm going to address and try to a answer some of your concerns first. This will be just a primer and I'll apologize in advance if my reply seems a bit brusque. That's because I'd like to hit the 'high spots' first----- then I/we will welcome further questions from you.

So-----  PA is a state with a high rate of infected ticks. You already knew that.

1. A rash, of any kind, is only present about 50% of the time.

2. Many people never feel the tick that bit them. One stage of a ticks life is the nymph---- which is TINY and people report that they don't feel them.

3.  A  test done by any lab other than Igenex has a very high rate of error. I'm going to guess that you didn't have a test done there. Igenex tests aren't foolproof either but much better than a CDC sanctioned test.

4. I'm curious about the 'lyme specialist' you said you went to who said the test he wanted to do wasn't covered by insurance. Of course I don't know what your insurance plan is like----- but Igenex tests are covered by almost all insurance companies. Maybe that doctor meant that Igenex doesn't bill your insurance. That may be true, but Igenex will give you paperwork so you can send it to your insurance. Igenex always paid for mine.

5. There is NO test, ANYWHERE that will show if a person DEFINITELY does or does not have Lyme. I always had negative or indeterminate test results from Igenex but my llmd treated me for Lyme after doing many other tests to make sure I didn't have MS, lupus or other conditions. (You've already had most of them done-----so you're ahead of the game now.) My blood work always showed a picture of a healthy person, while feeling like road-kill!

6. Please tell me that you've kept copies of all your test results. :) If you haven't, please ask your doctor(s) for copies and then start keeping any further test copies.

If you wouldn't mind, would you please google Tom Grier then pick the listing that's from LymenetEurope. (Sorry I can't give the link----- forum rules here forbid that) Read his articles, please. They're written so laymen can understand easily.

One last thing------I'm fully aware of how people almost go broke testing and treating for this elusive disease. I understand that your finances are keeping you from getting tested and treated. That's a story repeated over and over and I don't have any viable suggestion for you. I can say, though, that many people have resorted to treating themselves with veterinary doxycycline (that's usually the first drug given for Lyme). I can't say I approve of that------ but it's a fact.

Below is a link to some more info on Lyme that's been posted here. Ricobord is the poster you want to read----- she's active here with detailed information. So much so that some people are overwhelmed by the 'brain-dump' of information--- LOL ---- but it's here and it's free!

http://www.medhelp.org/posts/Lyme-Disease/Could-it-be-Lyme/show/1995327#post_9499585

Í'll stop now and await your answer and more questions.
Helpful - 0
Avatar universal
I want to echo what Cave76 said about NY and IGeneX.  The myth that NY residents can't be tested at IGeneX is still out there, repeated mostly by anti-chronic Lyme and uninformed medical professionals.

NY requires additional regulatory hoops for out of state labs beyond what other states or the FDA require. There was a short period of time years ago when IGeneX tests were not available to NY residents as IGeneX hadn't completed those extra requirements yet. (I'm not clear what NY's hang up is... no other state or federal agency has so many regulations.)

Some additional misinformation about IGeneX includes a false belief that none of their tests are approved by the FDA and are therefore unreliable.  In my understanding, there are many proprietary tests at many labs around the country that are not approved by the FDA. It's not required. Just because a test is not FDA approved does not automatically mean it's unreliable or should be ignored.

(I think the whole "not FDA approved" excuse is also being used for cost control. I got a letter from my insurance that they wouldn't pay for B12 injections anymore because they're not "FDA approved."  What? B12 shots are a legitimate medical treatment for a legitimate medical condition. I can understand requiring justification, but this just sounds like an excuse not to pay for it.)

If a lab wants to license a test for other labs to run commercially, then they must go through the FDA testing and approval process. ANY lab that wants to run a Western Blot must run an FDA approved version of the test.  You can't just make up your own test and call it a "Western Blot."

This is true for IGeneX, too.  IGeneX has passed the same FDA requirements as any other lab running a Western Blot. IGeneX just runs a more advanced method of testing than most other labs. They use 2 different strains of the bacteria instead of just one, and they report more bands than most other labs. But it's still a Western Blot.  

They also offer their own interpretation of the Western Blot (which bands & how many), which is more liberal than the strict CDC and NY State interpretation. They report both results. The CDC/NY State interpretation is widely criticized by doctors who actually understand Lyme and how the Western Blot works.

PCR tests are well known to miss actual cases. They are frequently false negative. But a positive should certainly not be ignored. Only the negative result is "unreliable."  A positive is definitive.

IGeneX positives on a Western Blot are dismissed by many doctors who don't understand the testing process. The insistence of the IDSA and CDC that there are lots of false positives on a Western Blot is disturbing. They know very well which bands are Lyme specific, and it makes no sense to look at a test result showing Lyme specific antibodies and tell a patient they don't have Lyme.

It's also disturbing that they say a negative is very reliable when they've known for a couple decades that the antibodies can change from month to month. A patient can go from negative to positive and back to negative again while still infected. Even the data used to come up with the CDC interpretation showed patients who were false negative. (They were tested 4 times. If one or more of those results met the proposed criteria, then it was considered accurate for that patient. But no one told doctors a patient could be false negative multiple times!)

They also know that our U.S.-based tests produce lots of false negatives against European strains. The CDC did an official study on that about 3 years ago, but I haven't seen it publicized at all.

This is why we have this crazy world where positives can be reported as negative and negatives can actually be positive.  My belief that all our prestigious researchers and gov't health officials are logical, truth seeking scientists went out the window a while ago.

I read that one LLMD said at a conference that she doesn't believe there are false positives for Lyme Disease, except for the very rare occurrence that a patient has the exact 5 bands in the IgG that are NOT Lyme specific, and NO Lyme specific bands in either the IgM or IgG.  She encouraged treatment of asymptomatic people who test positive (sometimes seen in family members of sick patients), knowing that Lyme can fly below the radar before becoming a full blown infection. The CDC says to wait until you're actually sick to treat it.  As a person suffering with Lyme, I'd much rather have treated it before I got sick.
Helpful - 0
Avatar universal
Almost every good llmd doesn't accept insurance. The reason is very simple---- by not having to jump through all the hoops that an insurance company puts up the llmd is free to prescribe the treatment s/he feels best---- NOT just the one a person's ins. company will allow--- sometimes just 30 days of an antibiotic when the doctor and patient feel that much longer tx is needed.

You said "your ins will pay for scripts".

Yes. According to the ins. reimbursement schedule. Each persons ins. is different.

Every llmd I know of that wants payment up front, as you said the CT doc did----- and that's most of them----- gladly give you some sort of "invoice" that the patient can then send to their insurance company for reimbursement according to that insurance company's reimbursement schedule.

That reimbursement may not be the entire amount again, DEPENDING ON THE PERSON'S INS.

If a person has a crappy ins. company (Lyme wise) then the payments will be crappy.

Always, when going to a doctor who wants payment up front, ask for that invoice and then mail it in. (It should include a dx code and a procedure code on it.)

A good llmd, as the one in CT is, will know what to do.
Helpful - 0
Avatar universal
Shadow----- I'd like to correct the information that you gave to people about New York and testing through Igenex, with respect but in the interest of giving correct information.

From the Igenex web site:

"The Initial Lyme Panel: (Use for NY Residents) includes IgG and IgM Western Blots and PCR (whole blood and serum):"

http://www.igenex.com/Website/

And the PCR, no matter what a person believes about it's worth, is FREE.

"(IGeneX performs a courtesy PCR on whole blood in the above panels)" as a careful reading of the Igenex web site will show.




Helpful - 0
Avatar universal
that doc in ct is 800 first visit and insurance wont pay for it he doesn't even accept ins at all your ins will pay for scripts that's it . ive been on this roller coaster its very costly both mind and wallet

good luck to you
Helpful - 0
Avatar universal
ny state doctors can not use igenex test its banned there by state law
u have to go out of state for blood draw and treatment if you use the test for treatment and fyi the pcr whole blood is a waste of money just do the western blot igg igm its 200 bucks I did it a few months ago
Helpful - 0
Avatar universal
And here's some great reading from a power point presentation from him:
http://www.ilads.org/lyme_research/chronic_lyme.html
Helpful - 0
Avatar universal
YIPPEE! And good for you for following up. At least now you''ll know you'll be getting the best of care.
Helpful - 0
Avatar universal
Just as an update -- I have an appointment with the doctor you recommended in Connecticut in a couple of months!
Helpful - 0
Avatar universal
When you get information back about the doctors-- please Private Message me. Or post them here, for what good is information if it's just passed between 2 people? It's up to you.

I can pretty much guarantee that a (good) llmd would only use Igenex. There's none comparable in the US. now that MDL has 'gone to the dark side".
Helpful - 0
Avatar universal
I reached out to ILADS re: LLMDs in my area, and I also called the CT doc you recommended. We'll see what happens.

I assume that most of the (good) docs are versed in the testing, and would recommend IgeneX to do further testing?
Helpful - 0
Avatar universal
Best of luck to you----- and I'm happy to see you're being active in your search.

If you've found a doctor you think might work, would you please private message me? There are Lyme doctors and then there are Lyme doctors, if you know what I mean. Although I don't live on the East coast I have tentacles everywhere with other science based thinkers. (grin)

p.s. One of my unfinished projects is to post a thread about why the term LLMD is becoming less and less the gold standard than it was 'back in the day' when they were regarded as our saviors. There are still many doctors who still deserve that nick-name but there are almost as many who do not, in my opinion.
The same is happening with the moniker ' an ILADS doctor'. But that does NOT detract from the web site and it's worth----- just with the types of doctors that can now say, truthfully, "I'm an ILADS member".


Helpful - 0
Avatar universal
Thanks again for all of the info -- wading through it slowly but surely! I obviously have a lot of reading to do, but it seems like some of my symptoms are certainly consistent, so I feel like it's worth pursuing.

I spoke to Igenex, and it seems like the first step is finding a doctor willing to requisition the tests for me, so I'll do my best to find an appropriate doctor.

I'll be sure to let you know if I have any other questions, and I'll try to follow up here if anything comes of it, but who knows how long it will be before I can actually be seen, etc.
Helpful - 0
Avatar universal
About the costs of tests from Igenex----- Since my insurance always paid for them I didn't 'worry' about the cost----- and those were a long time ago anyway. And btw---- I was always negative! But I started treatment anyway because of 'high suspicion'. Which was later proved correct via lumbar puncture/spinal tap. I'M NOT ADVISING PEOPLE TO GET A LUMBAR PUNCTURE! Just saying I got 'lucky' and got a positive after just one.

The best way is to call Igenex---- they have an 800 number and I've always found that they are willing to give information over the phone.

Nick Harris, owner, has always, in the past, been willing to talk to people when he's in and when he has the time. But some technical info can be given by the lab manager also.

Labs are forbidden by law to give treatment advice, I'm sure you know.

Helpful - 0
Avatar universal
You think THAT'S a lot of information??? LOL Just started---- and not just because I'm gabby but because Lyme and co-infections (which we haven't even touched yet!) is so very complicated. Complicated even more because of the Lyme Wars.

Back to your main quest------ a good Lyme doctor: One of the best just re-opened his practice in CT. Yeah, I know, not in NY but not that far from it.

I imagine he already has a long waiting list but I'd put my name on it while exploring other doctors

http://www.theridgefieldpress.com/20415/lyme-disease-doctor-dancing-veterans-bank-executive/

While you're waiting---- please pick up a copy of Cure Unknown by Pam Weintraub and read the best book there is about Lyme. She researched, verified and double verified everything she wrote as the responsible writer she is should do.
Her web site is http://www.astralgia.com/f

This web site that gives the telephone numbers of many support groups in NY might be a resource for you and might have the name of a good Lyme specialist:
http://www.empirestatelymediseaseassociation.org/

But it's a form of 'buyer beware' that I have to warn you that there are many Lyme specialists that I wouldn't send anyone to. You would have to ask a person who has no agenda except for science-based medicine. Unless, of course, you want to be treated by some rather ineffective methods (in my opinion of course---- that's MY agenda!)

Helpful - 0
Avatar universal
Wow, so much information.

How can I find a decent Lyme doctor in the city? I've seen things about how many of them don't take insurance, etc, so I'm assuming again that this will be costly.

Do you know the approximate cost of the tests that would be ordered for a case like mine? I'm completely overwhelmed here, and have no idea how to proceed.
Helpful - 0
Avatar universal

"Actually, I just also remembered that my dog was treated for Lyme last year. He was never officially diagnosed but was having strange neurological symptoms, and responded well to Lyme treatment."

Have to smile, ironically! Yesterday I was reading articles/comments by veterinarians about Lyme disease. Bottom line---- vets aren't involved in this nasty  war about Lyme that doctors are. They treat, the animal gets better. If not, they treat again. No persecutions of vets that treat often and long!

I went to a site:
http://www.capcvet.org/parasite-prevalence-maps/
[about Lyme in dogs]

The HUGE irony about that map is the high risk shown for Lyme in OR for dogs!
While a human can't find a doctor that will treat longer than 10-30 days and only if they have a bulls eye! I know that for a fact!

Maybe Oregonians should grow shaggy hair and long tails!

{I'm glad your dog is better}
Helpful - 0
Avatar universal
"That site says that tests are not available for NY "

Perhaps you mis-read the info at Igenex?

"Panel 6050 #230 (Lyme IFA), #188, #189, #456, and #453

The Initial Lyme Panel: (Use for NY Residents) includes IgG and IgM Western Blots and PCR (whole blood and serum)"

Here's another site to read---- might have some information in it for you. It explains the difference between the CDC criteria (which you had at Quest)
and how Igenex tests.

http://www.igenex.com/labtest.htm

Lyme definitely exists in FL. As it does in all the rest of the states, regardless of what the CDC or a doctor who knows nothing about Lyme (or believes what the CDC says about it).

A rash that comes and goes MIGHT be the EM rash associated with Lyme.

" The rashes can come and go.

Will a rash caused by Lyme Disease disappear without treatment?
Yes, it will often disappear without treatment but may resurface as a single rash or multiple rashes."

http://www.childrenslymenetwork.org/faq/

[Oddly enough I go to the site above often for simple information. Dr. Jones the famous pedo Lyme doctor is medical adviser which is why I trust it.]

Your mention of studying in Europe intrigued me. The strains for Lyme in Europe are different that in the US. Although those boundaries are becoming a little blurred. IF you were infected there the tests performed in the US probably won't pick them up.

The rash for Lyme is called an EM (erythema migrans).

"Where does an erythema migrans develop?

Normally at the location of he tick bite, but it can also develop at other sites, and sometimes there can be multiple at the same time, when the bacterium has disseminated (spread) throughout the body. An erythema migrans can also reappear.

How quickly does an erythema migrans arise?

Usually within a a few days to several weeks, but sometimes even after months."

''EVEN AFTER MONTHS''

So that doesn't rule out you picking up Lyme disease in Europe. That's IF you have Lyme disease! (I have to emphasize that!)






Helpful - 0
Avatar universal
Actually, I just also remembered that my dog was treated for Lyme last year. He was never officially diagnosed but was having strange neurological symptoms, and responded well to Lyme treatment.
Helpful - 0
1763947 tn?1334055319
I live in Fl and yes, Lyme exists here. I am in a huge Fl lyme support Group on Facebook.
Helpful - 0
Avatar universal
It should be noted, however, that the first time the weird rash showed up, I had just returned home from studying abroad and was living with my parents in Florida. I frequently walked my dog in the woods and through tall grass, and we have found ticks on him several times, so it's definitely a possibility, though I know the southeast is less affected than other areas of the country (if at all? I'm not super educated about this, obviously).
Helpful - 0
Avatar universal
Thanks for the reply. That site says that tests are not available for NY Residents -- oh boy. Probably the same ******** that they instituted against the herpes Western Blot, as well.

Cost is going to be the biggest factor here, obviously. I've sunk so much into herpes testing that I'm basically maxed for the time being.

I was bitten a couple of times in childhood, but I don't have any specific memory recently of being bitten. Ditto the classic "bulls eye" rash. Like I said, I've had some other strange rashes, but none that looked like the classic presentation.

Yeah, at this point, they haven't completely ruled out MS, but the presentation is not typical for that, and I never really bought it as a viable option (presenting with pain vs. optic neuritis, bilateral pain, etc). Herpes is still a consideration in my mind considering many of my parasthesias have been genital, but I've tested negative so many times (and so has my partner) that it's getting hard to sustain that belief.

Is there a place to find a good Lyme doc in my area? I assume there have to be some in NYC.
Helpful - 0
Avatar universal
I had a long reply and lost it!!! Arggh! Now I'll just make a short one and get back to you tomorrow. This are just bullet points and I'll explain them fully tomorrow,

1. Unless you're extremely lucky you won't find an ID doctor who will treat for Lyme (if you indeed have it) in the best way.

2. Your present neuro doc is a member of the AAN which is pretty much the same as being an ID doc and usually useless for Lyme.

3. Igenex is the best (the only) lab for Lyme.
http://www.igenex.com/Website/
But the tests are much more than $200, sorry to say.

4. Most important! Do you remember ever being bitten by a tick?

I have to remember that you may not have Lyme. We have a bit of tunnel vision here about Lyme---- and usually we're right----- but there ARE conditions other than Lyme. But since so many other things have already been ruled out-----if it were me I'd continue to investigate Lyme.

Talk to you later.

Helpful - 0
2
Have an Answer?

You are reading content posted in the Lyme Disease Community

Top Infectious Diseases Answerers
1415174 tn?1453243103
CA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods