DIAGNOSED WITH LYME!!

[MsWobbles]

Hi, All,  

After years of inquiry, I FINALLY got diagnosed - with Lyme.  My deepest gratitude to Quix for suggesting I continue to pursue this route (even though I had done so 2 years ago to no avail and had therefore given up on Lyme inquiry).  I am posting this to you MSers because it is of vital importance to you since many MS patients have been found to also be positive for Lyme.

Two years ago because of a positive Lyme test, I had been referred by my very concerned primary care physician to an infectious disease doctor.  That idiot Infectious Disease doctor just sat across the room and coldly informed me that I "could not possibly have Lyme disease because chronic Lyme disease does not exist."  Yep, that's the lie he handed me and I believed him because back then I thought all doctors were knowledgeable and truthful.  My eyes had not yet been opened.  And he was able to lie to me with impunity because our national policy/statement on Lyme (written by a team of infectious disease doctors who have since been investigated for "conflict of interest") was that "chronic Lyme does not exist."  Unbelievable falsehood!!  The Lyme bacteria is a "spirochete" like syphilis and it kind of screws itself into our tissues.  In other words, if you have Lyme, you're "screwed" (LOL!).  

Lyme bacteria are very clever and often do not show up on lab testing - especially in the chronic stages of Lyme and especially in cases of "neurologic Lyme".  In addition, our govt. pressures the labs to fine-tune their tests so that they will only show some of the people who have Lyme - the tip of the iceberg actually.  That is why Lyme diagnosing has to be basically clinical rather than based on labs.  I know there have already been posts here about a lab in California which specializes in Lyme testing - called IgenIX - and that is currently probably the best lab for Lyme testing in this country, but still, you can't just go by any lab test results on Lyme because all labs have to answer to our government - which does not want the Lyme testing to be too accurate.  

For a real eye-opener and further information on what people with Lyme are going through in this country, read "Without A Cure" a book written by a medical writer whose entire family, including herself, had Lyme.  Also, I highly recommend the DVD called "Under Our Skin" - which is easier than reading the above-mentioned book - for a quick insight into the dilemma of Lyme patients in the U.S.  To see excerpts from this DVD, go to the ILADS website and click on "view videos" at the bottom of the page.  Be sure to watch excerpt #1, #3, #5, and one called "Turn the Corner Foundation."  ILADS is the International Lyme Disease website.  Its President Elect had been diagnosed with ALS but really had Lyme.

Many of the Lyme patients on the DVD had been diagnosed with other neurologic conditions such as: MS, ALS, Parkinson, Lupus, fibromyalgia, rheumatoid arthritis, chronic fatigue syndrome, etc.  If they had not discovered that they actually had Lyme they would have died because Lyme, like syphilis, is a killer.  That is why I am posting this lengthy discussion of Lyme on our MS website!!  It is important for all of you, diagnosed or not, to consider investigating the possibility of Lyme.  First, it is possible to have both, Lyme and MS (like Quix said, where is it written that we can have "only one"?).  Second, your MS diagnosis may or may not be accurate.  However, I'd say that if your current MS treatment has improved your symptoms, then you likely don't have Lyme - 'cause you'd be getting way worse with just MS treatments and no antibiotics.

How to investigate for Lyme?  Rule #1:  You MUST go to what is called a "Lyme-literate doctor" - be it an M.D. or a D.O. or an N.D. You can find a Lyme-literate doctor by contacting your local Lyme support group or through ILADS.   Do NOT go to an infectious disease doctor:  They wrote the chronic-Lyme-does-not exist policy nonsense and you will be blown off by them like I was 2 years ago.  

There are precious few doctors now willing to treat Lyme patients because the govt. and the medical associations have instituted a "reign of terror" against capable physicians treating chronic Lyme.  Such doctors have been persecuted/prosecuted.  Excellent Lyme physicians who were saving the lives of many chronic Lyme patients have been dragged into court, accused of treating patients against national policy (i.e. there is no such thing as chronic Lyme) and had their licenses jerked and have been fined millions, bankrupted!!  This has been happening silently around us.  

Rule #2:  Use IgenIX lab in California for your Lyme testing.  

Rule #3:  Don't rely on just test results.  Lyme diagnosis is mainly a clinical thing since the tests have been altered under government pressure not to show everyone who has Lyme.  According to ILADS, the current two-tiered ELISA/Western Blot testing fails to detect up to 90% of Lyme cases - effectively preventing most people with Lyme disease from being diagnosed and getting life-saving treatment.

The official government/medical statement on Lyme has recently changed, I was told, now stating that, yes, chronic Lyme DOES exist, but they declare there is no treatment for it.  So I guess those brave doctors treating chronic Lyme effectively can still be persecuted/prosecuted by the govt/medical associations because they are violating the national policy that "there is no treatment for chronic Lyme."  

Lyme is not a rare disease that is easily cured as our govt/medical officially state.  Per the CDC, Lyme is the fastest growing vector-borne disease in the U.S.  Early Lyme is more easily cured, but chronic Lyme treatment involves difficult and lengthy treatment.   Lyme is epidemic and is in all states!!  There may actually conservatively be more than 10 times the current estimate of new cases by the CDC (because of widespread non-diagnosing of Lyme).

So people, choose wisely!!  You know how to proceed.  Best of luck to all of you!!

WAF

WAF  

[HVAC]

I am glad you finally got your answer. I am sorry you were not treated sooner. Since Lyme needs to be treated sooner to stop permanent damage.

Alex

[MsWobbles]

Thanks!  Yes, sooner is better, but sadly most people with Lyme go undiagnosed until much later, and many are not ever diagnosed.  They are blown off and denied treatment in the early stages because they make the mistake of going to regular medical doctors instead of Lyme-literate doctors.  The doctor you go to must be designated as Lyme-literate.  You find such a doctor through your local Lyme support group or ILADS.

If you watch video excerpts #1 and #5 at the bottom of the page on the ILADS website (click on "view video") you'll see a former forest ranger from California who, when bitten, immediately brought the tick, along with evidence of the classic bull's eye rash etc. to 5 different doctors' offices.  However, he was blown off by the doctors, not given early Lyme treatment, and his infection was allowed to go into the chronic stage so he had to end up spending about $75,000 of his own money for chronic Lyme treatment in order to feel better.  Lyme can go into Alzheimer and this forest ranger did have instances of not being able to find his way home.  Many with Lyme never do get diagnosed and slowly die.  It's a national crime!

WAF

[Lulu54]

WAF - finally!!! You are the perfect example of being tenacious and not giving up finding answers.  I am so happy that you have an answer.  Now is the time for patience, and lots of it, while you work those cooties out.  

I am so happy for you, even though having Lyme stinks.

best, Lulu

[torikat32]

Glad they found out what is going on and glad you didnt give up ht e search for answers. what are they doing for you now? are you feeling any better?

Take care
Kat

[cainer]

good- grief!!  im glad they figured it out , but...  thats not good, but maybe get you some help!!  gosh it took them long enough!!   hugs!!  tick

[supermum_ms]

WAF i'm so so pleased that you finally have the answers, its totally outrageous that it took 2 years longer than it should have, when you already had a possitive result for Lyme, WTF scuze the language but sheesh!

I personally get a little antsie when i read stuff that screams conspiracy, i'm sure i'm not alone with that so i'd just hold back a tad with the all the gov stuff because your message is important and i'd hate people to tune out because of it. :-)

So what exactly is the 'treatment' for chronic lyme disease?

HUGS..........JJ

[drsdonthelp]

This is some great info. I have some questions.. :)

1) Do you always get the bulls eye rash when bitten?
2)Does lyme show lesions like ms?
3)Are all the symptoms the same as ms?
4) Does lyme cause an EEG to be abnormal?
5)Last one I promise :)... If you don't recall ever being bitten by a tick, and say you were a kid when it happened, what kind of problems would you be experiencing say 30 something years later? If this is or could be deadly, why wouldn't these doctors be looking to find if that is the cause for the neuro. symptoms sooner? That's pretty sad.

So sorry for your dx. but glad you have an answer and can be treated properly!!

And sorry for all of the questions, i appreciate any info. I can get, this forum and all the people here are so very helpful!!

Hugs,
Pam

[Guitar_grrrl]

WAF,

I'm so proud of you for sticking to your guns on this!  Just your opening explanation in this thread was an amazing eye opener for me.  Tenacity has it's merits, and it has certainly paid off for you!  Wow!!

Now, I wish you a safe, speedy (as can be) recovery.  Take good care of yourself, and visit us often.

Big Hugs,
Lisa

[Sparkysarah]

I am so happy for your that your relentless search for answers and your determination that there had to be a reason for your symptoms has finally paid off. However the dx of lyme disease is not great! There was a medical programme on TV here in Uk recently which showed that several cases of Lyme had been reported in England from people who had visited the States so I was interested to read more about it from your post.

Thank you for sharing your journey and please keep in touch on the forum..some of us have got to know you and I am sure I am not alone is saying hang around and let us know how things are for you..it is so helpful for others who are in limboland.

Love and hugs

Sarah x

[michelleric]

WAF,
Finally a DX after 2 years...that is a LONG time and I am SO glad you got an answer!
Michelle

[shermay]

Well done you for sticking by your gut instinct to find the answer.

We all know our own bodies, and we just know when something is wrong -  please stay in touch and let us know how you are doing.

Hugs,

Debs

[sllowe]

Wow, WAF! Way to be persistent! And, thank you for chronicling what you've been through these years for those who weren't here to know.

I'm proud of you! You starting your meds asap?
-Shell

[addicted2harleys]

First off, I am really, really happy for you finding your answers.  Sorry it is something icky but now you can focus on the treatment.  and it has got to be a tremendous relief!

I was tested for Lymes way back when and also again like last year.  I have seen a few people here learn they have it, too.   I do understand it is a mimic and the tests aren't always accurate, but there are a lot of tests out there with inaccurate results....right down to pregnancy tests.

But, now I have some confusion.  Why get tested for it at all if the tests are that inaccurate and you can only get answers from blacklisted doctors who will risk their career to give you a clinical dx?   That seems rather scary to me.  

If, like in my case, all neuro tests are clean...well, except for the neuro exam itself....and your neuro gives you a clinical dx of MS....if all the symptoms of MS and Lyme are the same...how do you figure out if you are clinically dx MS or clinically dx Lyme or clinically diagnosed something else?  Draw straws?   Does that make sense?   I know what I am trying to ask, but it isn't coming out right.  

Also, with MS, the DMD's don't generally improve your symptoms, they just could stop/slow progression and lessen flares, correct?  If yes, then those on DMD's with MS dx don't necessarily have wrong dx and actually have Lyme just because they have bad symptoms, is what I am thinking.  You know?

And, I have to agree with JJ, the conspiracy thing tends to make me lose focus and I tend to turn away from things like that.  Why would the gov be doing this doesn't ring logically in my mind.  I don't know...

I guess I am rather confused now.  It reminds me of backdoor abortions.  :(
Dr's being prosecuted for giving antibiotics?  Fined millions, licenses revoked, bankruptcy?  I don't get this as it seems illogical in my mind.  

I didn't write this with any disrespect toasted anyone, especially WAF, I just don't understand the message here and wanted to get it clarified or something to help me understand.   I thought the Lyme tests if sent out was pretty accurate?

Thanks,
Addi

[addicted2harleys]

Ooops!  I just saw that you wrote me privately, too.....sorry!

Addi

[wonko]

Howdy from a chronic Lyme patient.

I have just a couple of comments to throw in to the mix.

Like WAF, I have a diagnosis of chronic Lyme, which came after a similar struggle.

For clarification, the book WAF mentions is not "Without A Cure," but actually called "Cure Unknown," and is written by Pamela Weintraub.  It is a interesting read that mixes personal experience, history, and medical detail.  A good read for anyone long sick and not diagnosed.

I can also appreciate the comments that are wary of the dramatic controversies surrounding Lyme disease.  I myself was hesitant to pursue a diagnosis of Lyme disease due to some of the more extreme opinions about Lyme that I read.  However, regardless of where you stand on the various conspiracies, it is undeniable that Lyme is a controversial subject in the medical community.  There are strongly polarized opinions on how to test for, diagnose, and treat Lyme, the popular opinion being that Lyme is "hard to get, easy to cure."  Unfortunately, that narrow point of view leaves many to fall through the cracks.

For those that are interested, I would highly recommend reading the short summary titles "The Lyme Disease Controversy"  from the Columbia University Lyme and Tick-Borne Disease Research Center Website.  I think it is a brief but fair and balanced overview of the two main "camps" in the Lyme disease debate.  I post the source link and copy the few paragraphs below.

And finally, before my cut and paste, a wave to Lulu and a thanks for acknowledging that having Lyme "stinks."  It is a sign of your deep compassion to recognize that, while in some ways a dx of Lyme may be a relief, it is in itself a complex illness that can be difficult to cure.  FWIW, I'm at the 2.5 year mark (give or take) of treating...

As promised, the link and cut-paste are here.  Hope all are well, a few "old timers" from this forum may even recall me :)

~W


****************
From http://www.columbia-lyme.org/patients/controversies.html


THE LYME DISEASE CONTROVERSY

The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease, such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.

Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitively identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue.

In July 2009, the IDSA held a hearing to review recommendations and critiques of the 2006 Lyme Disease IDSA treatment guidelines by a range of speakers from the United States.  The comments of those speakers can be found at the IDSA website.

****************

[Lulu54]

Hi Wonko, I was hoping you would see this post and weigh in with your experience.  I defer to your expertise because you certainly have been through it all.  In my limited knowledge of Lyme disease, I know it is a problem that is as hard to diagnose as MS and takes more than  a little bit of perseverance and patience to be rid of the bugs.  

I really am glad WAF has some answers, but am so sad that it isn't something easier to trreat.  The Lyme forum here at MH has some very knowledgeable members, including Wonko, and I hope you will lean on them for advice and support..
Lulu

[HoustonDogLove]

Yay, you found and answer!
I think Lyme disease is easier to cure, I haven't read up much on Lyme disease in humans but I thought it was a chronic thing.
In dogs we use doxycycline to treat and it can be chronic. Chronic because you may never completely get rid of the organism. Or sometimes I think it can be chronic because you can have life long joint pain or other symptoms.

Every diagnosis can be grim but if you look hard enough you can see a silver lining. I think you may be able to breathe a sigh or relief that it isn't MS.

[rendean]

I am SO happy that you finally got a diagnosis! It truly does prove that persistence does pay off!!  I hope treatment will improve your symptoms.

Good luck hugs,
Ren

[cainer]

hi!  how are you?  this lyme isnt it, bad?  dont know how to put it, but a girl i knew -havent seen her forever- but for her its really some bad stuff! worse than m.s.  unless they found a way to help people with it. havent seen her for ten years, wish you the best!!  hugs  tick

[MsWobbles]

Thank you so much for your kind words and support!!!  It has been 6 years of inquiry for me and, though disgusted at hosting Lyme bacteria, I'm so glad to be finally diagnosed.  I would have preferred to have had a mild form of MS (if there is such a thing) because it's cleaner and I love this MS website and all of you MSers here who I am so fond of, but I think most of us who are diagnosed with something would usually have preferred a different diagnosis - right?  Anyway, I'm so glad its Lyme and not ALS!!!

Regarding the governmental instructions to labs to limit the number of people diagnosed:  This seems to be true and it is called being "cost effective."  Lyme treatment can take a long time and be very expensive.  It can mean insurance companies would have to pay lots on behalf of chronic Lyme patients as would companies where the Lymees  take disability or leave of absence.  Cost is the reason for not diagnosing a lot of chronic Lyme people.  The part about excellent Lyme physicians being targeted, taken to court, and essentially put out of business or "stalled" or discouraged in their practice of treating Lyme also happens to be true. You can see it in the documentary DVD "Under Our Skin" or the book "Cure Unknown" (thank you Wonko!).  However, I hear you and I believe you are right about the importance of leaving this info about our govt. out in future posts because people want to believe that our govt. has our best interests at heart.  I know it can alienate, so I'll try not to inform readers about governmental actions in future posts.  My son has repeatedly told me to leave the govt. out!!

Thanks so much, Wonko, for correcting me on the title of  the book by Pamela Weintraub:  Cure Unknown.  I was having brain fog when I said it was "Without A Cure" - MSers know well what that is right?  Well Lymees have the same thing!!!  I actually (big rush) recently used a men's room without knowing it (until I came out). Fortunately no one else was in there!! At times we can be way gone mentally and at other times we're fine!!  Kind of reminds me of the fog rolling into the beautiful Oregon coastline obscuring everything, and then it might lift in 30 minutes and everything is back to normal.  Anyway, glad Wonko came to the rescue or you guys might have been looking a long time for the title I gave.

Anyway, I see my Lyme doctor today and may start on antibiotics today.  Looking forward to doing something about the progressing symptoms I have been having lately.  To understand the Lyme symptoms I'm having, just think about your MS symptoms - they can be the same (although Lyme can present in lots of different ways).  And remember, whether we are already diagnosed with MS or something else, Lyme can still sneak into our lives.  For your sakes, I sincerely hope it doesn't!!

Hugs to all!!

WAF  

[MsWobbles]

Regarding your comments about how it is scary - yes, it is scary in all the ways you mentioned!!  

Why do lab tests at all?  Well some lab test results can be positive and yours might be. I had 2 positive initial lab tests 2 years ago, but because of the negative backup tests, I was told they were "false positives."  Also, even if your test results are not considered officially positive, they still might show the presence of bands which would only be present if you had Lyme (they are specific to Lyme).  You might be only one band away from being considered positive (either by CDC standards or by IgenIX lab standards) and, once you go on antibiotic treatment and start "herxing" (having bad reactions because the bacteria being killed are releasing toxins that accumulate in your body) you might then have more bands show up leading to a positive lab result for you.  Also the lab tests by IgenIX can show whether your Lyme disease is in an early or later stage.  That's why you should do labs:  But you are more likely to see the true picture with IgenIX labs.

You question about how do you know for sure?  It's hard.  Lyme is the great imitator of many other diseases.  One indicator of Lyme might be if you "herx" (see above) to certain antibiotic treatment, or to cat's claw, or to anything that is known to kill Lyme bacteria, that would be something expected with Lyme.  Most likely, MSers wouldn't have that reaction. But it is hard to know for sure.  I heard on the news of 2 people dying in our state of what they and their families thought and been told was ALS, but on autopsy it was really Lyme.    

Hope this helps a little.

Good luck to you!

WAF

[MsWobbles]

Hi, Drsdonthelp,

I'll try to answer your questions:

1) Do you always get the bulls eye rash when bitten?  No.  Most people never see a rash.
2)Does lyme show lesions like ms?  Not sure.  Maybe rarely.
3)Are all the symptoms the same as ms?  Not sure all are the same, but MS and Lyme can share many symptoms.
4) Does lyme cause an EEG to be abnormal?  Not sure.
5)Last one I promise :)... If you don't recall ever being bitten by a tick, and say you were a kid when it happened, what kind of problems would you be experiencing say 30 something years later? If this is or could be deadly, why wouldn't these doctors be looking to find if that is the cause for the neuro. symptoms sooner? That's pretty sad.  For this answer, you'd best see the DVD, "Under Our Skin".  You can go to the ILADS website and click on "view video" at the bottom of the page.  There you can click on excerpts from that DVD.  Be sure to see #1, #3, #5, and the "Turn the Corner Foundation" excerpt.  If I remember right, in the Turn the Corner Foundation excerpt you will see a disabled  teenager with contractures who can't walk down the stairs.  In the DVD, the parents of that boy spoke and shared his story.  They had told his pediatrician repeatedly of their concerns about Lyme and the boy's developmental problems since that boy was a toddler.  They were blown off.  The end result is that now that boy is extremely disabled, cannot walk or even talk.  He had Lyme. Yes, it is sad.

For further, better information, please go to the MedHelp Lyme website. It is excellent.  They know far more than I do.  Wonko or JackieCalifornia will be glad to help you!!

Good luck to you!!

WAF

[addicted2harleys]

WAF-

Thank you for not taking my message out of text.  I was worried you would not understand what I was trying to say.  

I have always known Lyme was one of the mimics, but truthfully know next to nothing about it.  I haven't felt the need to learn about any of the mimics once they were tested for and ruled out.  I did have one of my Lyme tests done while living in CA but don't know if it was sent anywhere.  I will have to check on that when I get back home.

I have to get going now.  Time to go look at houses!   But, I wanted to send a quick note and will write more later...

Hugs,
Addi

[shermay]

I too wish you the very best of luck WAF

It's been a hard road, but you have done so well on getting a dx.

Please keep us all informed on how your doing.

Wishing you the very best,

Hugs,

Debs X