Lyme Disease Community
Undiagnosed
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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Undiagnosed

Hello,

I need a little help figuring out some really strange symptoms that have bothered me for several months now. I started with hand tingling, which has now spread to my arms, legs, tongue and head. At this point I have full body head to toe  tingles continuously, with varying degrees of sensations. Along with the tingles, I have had bugs or worms crawling on me sensations that literally kept me awake at night.

In March, I completely lost my appetite for three weeks, and at the same time had a golfball sized lump feeling in my throat. It was a little hard to swallow. After losing 15 pounds in three weeks (Bonus!), my appetite came back, the lump went away, and then I noticed when I swallowed I could only feel one side of my throat muscles.

Then I had an electric shock I described as an intense and forceful, buzzing electrical shock that ran from the crown of  my head down to my tailbone. I noticed my ears were ringing more often, I kept looking for new reading glasses, and had a few new muscle jerks in my arms and legs.

Several weeks ago, I nearly passed out three times at home and once at yoga class within a 2 week period. At that yoga class I noticed when we were lying flat on our mats on the floor, I was leaning far to the left and could't use the top of my left leg muscles to push myself back to centered. It was an eerie feeling and I thought stroke ? And of ignored it and moved on (life is so busy).

The muscle jerking is uncomfortable and inconvient at this point and seems to happen when I am about to do something. If I am working and about to move my mouse, my arm may jerk uncontrollably.

Everything seemed to escalate to a point in June. My left leg seemed to be weaker and my left foot didnt want to pick up like usual. I actually tripped and fell flat on my stomach while running. Then, my left knee didnt want to lock. My lightheadedness went from occasionally to continuously and the ringing in my ears is conituous as well. I am asking my kids to look at me when they talk to me. I kept having to hold onto things around my home because of dizziness and lightheadedness when I turned too quickly, and had to keep side-stepping to keep from falling over while I was bumping into doorways.

For seveal months I felt as though I were standing on a buzzing wire that was so uncomfortable that I dropped between 15-20 lbs int he month of May without trying. And yes I know that's not healthy weight loss. Now, however, it is either going away or I'm getting used to it.

And finally, after a hot shower several weeks ago, I literally could not walk for about 30 mintues until my left leg would work again and my right leg cramps went away. This was the culmination of several months of all of these symptoms which have all but completely subsided at this point. Now I have that constant ear ringing, prickly tingling, episodes of lightheadedness and a light buzzing on my insides. Still no appetite and still down an easy 20 lbs from May.

My PCP ordered an MRI of the head which was negative. Now I am waiting to see the Neurologist but still don't have an appoinment scheduled as they are supposed to call me.

Thanks, 
Marell
52 Comments Post a Comment
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It is hard for someone not medically trained to give you an answer because it good mean many things. It could fit Lyme and the co-infection bartonella. I think the ringing in the ears I had in the past but have all the other symptoms now. It may be worth going to find a Lyme literate doctor, what we call LLMD which you could find one going to ILADS.org and finding one near where you live. I was misdiagnosed with MS, Lupas and a whole variety of ailments before finding out it was Lyme . Yours may not be so if I were you, knowing what most of us go through, I would find an LLMD and let him lead you and by the way, I never had the circular rash that most people say they get with a tick bite. Go to the neurologist and get copies of all your tests, even the MRI and then go to an LLMD. I had a clean brain MRI and several months later they saw lesions on the brain.
Good luck to you let us know what happens!
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Thanks mojogal. I am definitely considering Lyme which is why I have posted here. I will look up the bartonella, haven't heard of that one before. Most of my symptoms have gone or are just very toned down from what they were. Is it typical for Lyme to flare? Or are symptoms usually steady? And what made your doctor rescan your brain only several months later? You mentioned lesions, does Lyme create lesions similar to MS?
Thanks,
Marell
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Welcome -- you are going through a lot!  

I agree with the suggestion to find an LLMD.  There is a split in the medical community about how serious Lyme is, how widespread it is, how to diagnose it, and how to treat it .... pretty much every aspect you can think of.

The most logical group of docs who should treat Lyme are neurologists and infectious disease specialists (since Lyme is a bacterial infection), but sadly these two groups are following diagnostic and treatment procedures set up decade ago when little was known about the special quirks of Lyme.

When Lyme is considered rare and easy to cure, docs don't pay much attention to it -- and especially they don't tend to consider other diseases often carried by the same ticks that need different diagnosis and treatment (called generically 'co-infections').

It is very typical for Lyme to come in waves, or flares, often seasonally (worse in the spring and summer in some of us).

MRIs may show fuzzy spots that could be Lyme, but could be MS, and docs who don't "believe" in Lyme will assume it's MS and not even consider Lyme.  MRI is not therefore useful in differentiating Lyme from MS, and if you have a doc who doesn't believe in Lyme, then the doc may default to a diagnosis of MS.  So, yes, Lyme can create 'lesions' in the brain that look similar on MRI to MS lesions.  But that is not a reason to assume you have MS.

There is another test that Lyme docs use, called a SPECT scan, which instead of indistinct fuzzy spots that could be MS or could be Lyme, instead shows areas of low blood flow in the brain, which does not occur in MS but can occur in Lyme, because Lyme can cause brain swelling.  Swelling means constriction of blood vessels, which then means low blood flow.

A Lyme doc will know from taking your history and asking about your symptoms what tests to order for the different co-infections that often (maybe 50% of the time) come from the "Lyme" ticks.  Bartonella is one, babesiosis and ehrlichiosis are others, and maybe a couple more.  

Lyme won't go away by itself, though it may go underground and not make you feel miserable.  Lyme is a spiral-shaped bacterium in the same family as the bacteria that cause syphilis.  Syphilis, until antibiotics were discovered less than 100 years ago, was a terrible disease that could lead to dementia and death.  Some people live with a low level of these diseases for a long time, but others are strongly affected, perhaps due to genetic differences in each of us and to our own immune system efficiency and effectiveness.

In other words, Lyme is to be taken seriously, and unfortunately much of mainstream medicine is not up to speed on current diagnostic and treatment approaches.  That's why finding a Lyme specialist is critical.
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Lyme is known to recycle its symptoms. Before treatment mine did every 4-6 weeks like clock work. Now it's more scattered.
The doctor did anther MRI because I could hardly walk, had big time memory and vision problems. Unless the radiologist knows Lyme, he will think its MS that is why the LLMD has to read it. I also had muscle weakness, I couldn't open the fridge. I was living in another state at the time and saw several doctors, it wasn't until I moved to Fl that I found an LLMD.
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My Lyme mimiced MS, and I also have heat sensitivity, light sensitivity, tinnitus, sore ribs, tachycardia, and lots of GI problems.  I had flare ups or attacks of symptoms every 6-11 months for nearly 5 years.  In between I would recover.  I was thinking I had mono flare ups, because that is the closest thing I could compare it to.  (I had a bad case of mono several yeays earlier.). Now I know that Lyme suppresses the immune system and allows previously controlled viruses and other opportunistic infections to flare up also, complicating symptoms.  I also have Bartonella, which is common when Lyme symptoms are predominantly neuro or gastro.

You'll want a Western Blot test.  The blood screening test is way to unreliable. Even a Western Blot can be false negative, so you need to see the "bands" in your results, or you need to get tested at IGeneX, a specialty lab that does a better job of testing for tick borne diseases.

Google "Tom Grier Lyme" for a scientist's explanation on the flaws of Lyme testing.

Also, this document might be helpful for you.  It was for me.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Keep us posted!
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Question:  when you say to get a W blot bec. the blood screening test is unreliable, what blood screening test is that?
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The CDC two tier testing protocol says to run a screening test, either an ELISA or an IFA first.  Then, only if this is positive, run a Western Blot.  ILADS docs say at least 30% or more of their patients are false negative on the screening test. (That was me.)  Some say up to half.

A Western Blot is more useful as it shows actual antibodies present.  A lab that looks for bands beyond the ones the CDC looks for is crucial, as there are several other bands that show evidence of infection that are ignored by the CDC.  A simple CDC negative result by no means excludes Lyme.  But lots of non-IGeneX WB results can be diagnostically useful if they show other bands.

IGeneX does a better job of finding antibodies in the first place, and then reports everything that is relevant.  They show the CDC result, and then also give their own opinion on whether or not the test shows Lyme infection.

IGeneX will only run a screening test along with a WB.

Of course Lyme patients can also test false negative at IGeneX if they are just not creating enough antibodies to show up on a test.  
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You say above:  "IGeneX does a better job of finding antibodies in the first place, and then reports everything that is relevant.  They show the CDC result, and then also give their own opinion on whether or not the test shows Lyme infection."

Although IgeneX runs the W Blot/ELISA tests if requested (LabCorp also runs these tests), only IgeneX has a PCR (polymerase chain reaction) test which looks for bits of Lyme bacteria DNA and does not rely on the immune system to still be up and producing antibodies, which trail off after a while even tho the infection is still present and active.

That's the advantage of IgeneX -- a completely different kind of test, as I understand it.
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Since your symptoms look like both Lyme and MS, you might consider pursuing both until you have a definitive answer on either one.  It can take years to get a MS dx, so parallel paths makes sense.  

There are some old posts asking about LLMDs in PA, so you might search for those and message the posters for suggestions of doctors.  ILADS is a good source, but actual patient referrals are gold. (There are some docs out there who say they will treat Lyme who don't know what they are doing.) A local patient support group can also be helpful.  Unless a doctor is very public about treating Lyme, we don't put their names here.  Some practice quietly, as not to be harrassed by doctors who don't agree with them.

Did I already give you this link?  If so, sorry for the duplicate.  It talks about Lyme and coinfections and has a good symptom list.  You can also google a symptom with the word Lyme and see what comes up.  I found that helpful for  my strange symptoms.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
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Another thought:  are you taking magnesium (Mg) supplements?  Lyme bacteria use up Mg in their rude little reproductive process, and it is easy to become depleted.  Mg helps carry the electrical impulses from cell to cell in our bodies, telling muscle cells (for example) when to contract etc.  

You can take Epsom salt baths, if that is soothing to you, or you can take capsules.  I take capsules and it makes a huge difference in how I feel.  You know how babies get all floppy after a bottle?  Partly it's the full stomach and the warmth of the milk and being held by mom/dad, but also there's Mg in the milk.  It's a naturally soothing mineral.

I take 400mg twice a day, for a daily total of 800 mg.  I had a doc warn me not to take too much, but I was also told that if I got diarrhea, just back off on the dose a bit.  I'm a real lightweight when it come to any med or beer or anything, so if I can do 800 mg/day, probably most people could too.

I read that any kind (not brand) of Mg that ends in "-ate" is most easily absorbed by the body, like citrate, orotate, aspartate, etc.  I tried several varieties along the way, and the one I like best (that is, have the best effect from) is a brand called Magnesium CAO capsules, which has a blend of citrate, aspartate and orotate (C, A and O).  But different people might have different reactions to what works best.

While some Lyme-related pains and aches are probably due to something other than Mg deficiency, you might give it a whirl and see if it helps.  I ran out recently and before the new shipment came from the vitamin depot, I could really feel the difference ... aching and not at my best generally.

Just a thought!

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What a discussion :). Thank you for responses.
Ricobord- Good suggestion about looking into LLMDs in my area. I like to know what to expect, so that seems like the next logical thing to do. I'll check out the link as well.
JackieCalifornia- I hadn't thought about the magnesium yet but it makes sense. Cardiac patients often take magnesium supplements after surgery to help their hearts electrical rhythm.
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I was just about to sign off for the night, and am too sleepy to go back up and re-read to see if this was mentioned or not, but if you follow the two-track method (pursuing Lyme and MS at the same time), be aware that the treatment for MS is steroids, which suppress your immune system, while Lyme is a bacterial infection, which needs your immune system up and fighting.  

It has happened (so people have posted here) that they were misdiagnosed with MS when they really had Lyme, but before that mistake was figured out, they got treated with steroids (a common treatment for MS), which just digs the hole deeper by shutting down your immune system in the face of Lyme (and often other bacterial co-infections.)  

On that cheery note -- good night all!
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I wouldn't have thought about that Jackie, makes perfect sense though.
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My Western blot was a false negative which I hear is pretty common.
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I am the one that goes hysterical if you take steroids and have Lyme and not MS or Lupus as they told me I had. I almost died, woke up on a ventilator from the steroids and was in the hospital for 2 weeks. If a medical professional Lyme friend from another state didn't talk with them, I may not be here. They don't believe in Lyme. Very sad and scary.
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Egad!  I keep wondering what it's going to take for the Lyme deniers to air out their musty brains.  I'm guessing it's going to have to be a personal tragedy for one of them, someone in their family getting a bad case of Lyme and getting the "approved" [mal]treatment.  Humility in the face of Mother Nature is a rare commodity in the medical profession, it seems.
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Glad Jackie mentioned steroids!  Do not take steroids or any immune suppressing drug unless you are absolutely convinced you do not have Lyme.  I also had some steroids which put me in the ER and set off a downward spiral of new and worsening symptoms.  It is harder to cure after steroids.

And many with Lyme are deficient in Vit D, B12, and magnesium.  Supplementing all three can ease some of the symptoms.
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I'm on my way to GNC for supplements now. Thanks guys.
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Hi I suggest your first starting point is to get tested by a lyme literate dr if able and get tested for lyme. Lyme is called the great imitator- many people are being misdiagnosed with parkinsons MS Motor neurone and many other diseases the drs want to fit you into their little boxes. If you know your were definitely bitten by a tick then you are 99.9% there. Get your blood test done and  go from there. Doxycline is the drug of choice for lyme you also need other drugs to treat the co-infections and its various forms - spirochete, L form then cyst form. Be aware this is a very complex disease the sooner you find out the sooner you treat- the longer you've had it the harder to treat- the key to treatment is very slowly- if you treat hard you can have a herxheimer reaction and so it goes- Very sadly it is a very expensive disease not only on therapies but on relationships and you as the patient- Doxy also makes you photophobic and you get very severely sun burnt- it reduces your Vitamin d levels- then when you try to increase your vitamin D you become unwell- Lyme tries to get at you anyway it can- Good luck- we are commencing RHP therapy whereby the blood is cleansed and returned to you-  clean- currently blood is black from the toxins and also thick - so it makes sense to clean- the treatment has been around for many years and also  having  detox therapy- to drive the parasites out - When drugs become a toxic cocktail - livers become enlarged and inflamed and so it goes- when you find yourself taking anywhere to from 20 to 100 tablets a day just to survive you find you have to investigate more and find like we have that this treatment works - it is expensive but is our last attempt at getting our lives back - and it is NOT in Malaysia. Good luck- Have a family member help you as this is an exhaustive illness.
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I would disagree that doxycycline is necessarily the drug of choice for treating Lyme.

Doxy was the original med used for Lyme, but there are others as or more effective and without the stomach irritation from doxy.

Also, unless the Lyme infection was caught VERY early, doxy is not, to my understanding, as effective as other meds to penetrate the biofilms that Lyme bacteria hide in to evade the immune system.

And the sun sensitiving of doxy makes it not so good, esp in summer.
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hello,

i attended a lecture sponsored by lymenet.org and the doc from pennsylvania said that the standard 200mg/day dose of doxy tends to drive the bugs into cyst form rather than eradicate it once chronic lyme takes hold.

i was quite discouraged when i heard this news because i took it for 6 months last year and it's the only antibiotic i am not allergic to.  

now i'm working on herbal treatment.  it is a long road.

blessings,
binx
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I picked up magnesium  and vitamin D supplements today. Looking forward to feeling a little better, I'm tired of these prickly tingles, dizziness and numb spots. Regarding the first appointment, what kind of things should I expect to be ordered? I don't want to even think about an LP until I've been tested for lyme. Will I be referred to an LLMD right away?
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Unless you start with an LLMD, you might find it hard to get a referral to one.  Most mainstream docs don't 'believe' in Lyme, so the usual way we find ourselves at an LLMD's door is by going there directly.

Many (if not most) regular, nonLLMD docs practice very quietly and often alone or in a small group setting with like-minded docs.  NonLLMDs don't want to be accused of committing malpractice by sharing a medical practice with an LLMD.  That's why you find many LLMDs practicing alone or with a very small group of like-minded MDs.

You can go the route of internist/GP, neurologist, infectious disease doc, collecting test results and tenative diagnoses along the way, and if you don't get an answer that satisfies, then see an LLMD.  

Or you can go straight to an LLMD.  

I took the long road, because I had no idea I had Lyme and babesia.  Twenty docs later, I finally got myself to an LLMD.  

It's a different road of each of us, and understanding that LLMDs are pariahs in most of the medical community is important.  Sorry to be a downer ....
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I stuck with "the system" as long as I could.  I went through 12 doctors.  The last four said Ii didn't have Lyme because I tested negative.  But by that time I was convinced I did.  There was absolutely nothing else that could cause the wide variety of symptoms that I had.  

I went out of network to find one who knew enough about Lyme to tell me if I had it or not..  I have heard in the northeast whre Lyme is more common, there are some doctors in insurance networks who will treat it.   That's where the local referral comes in handy.
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I read some where that it wasn't until a younge person died an the autopsy revealed Lyme that they finally believed the poor woman.
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Same exact symptoms I have been having (I have however been having a lot more to add to that list) and I too think I have Lyme Disease.  I have just been recently doing research on it.  I do not know though because I was bitten by a tick when I was about 7 years old.  I have been having symptoms though for years.  Also been diagnosed with Fibromyalgia, Interstitial Cystitis, Chronic Fatigue Syndrome and various other disorders.  I am on steriods right now (but a very low dose) and they are not helping me.  I cannot go off them though because I fall apart without them because of the inflammation.  I am trying to get answers.  I do not know where to even start and where to find a doctor.  I live in Florida in the Jacksonville area.
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Welcome -- sorry you are going through all this.

I would suggest that you find a Lyme specialist for an evaluation.  A 'regular' doctor usually doesn't know much about Lyme, how test for it, or how to diagnose or treat it.

You could search online for something like

               jacksonville LLMD

and see what you get.

Also send an email to

               contact [at] ilads [dot] org

and tell them the area you live in, and they may have doc names to send you.  (ILADS is the main group for docs who understand Lyme.)

Finding reviews of docs online is helpful, tho not foolproof -- Lyme is a changing area of medicine, and there are great docs and not-so-great docs out there .... so if you find one who seems odd, try another.

Dont' worry about whether the tick bite from years ago gave you Lyme -- many of us never saw a tick or had a bite, but we definitely got Lyme and other diseases tick carry.  In your situation, I'd definitely find an LLMD (patient slang for a 'Lyme Literate MD').

Let us know how you do, okay?  Take care --
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Thanks Jackie.  Since I posted on here I have been doing LOTS of research online and youtube, etc.  I am almost 99.9% sure I have Lyme Disease.  However I do not have a lot of money.  Right now my hubby and I are living in a bus.  We lost our house 2 years ago due to bankruptcy becuase of me not being able to work.  I am thinking about selling our wedding rings (I really do not want to though) for the money to pay for testing, etc.  That is the only thing I have for money right now.  I know if I have Late Stage Lyme Disease I will have to have lots of treatment which can be costly.  I have an appointment with my Pain doctor today in St. Augustine and I will ask her.  I was hoping she could originally send off for the test (and I hope insurance will at least pay for that).  And then in the meantime I can find an LLMD who can read the test results and go from there.  I will keep you updated.
Thanks again Jackie. Take care and hugs
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Hugs and support your way. Stay in touch. Marell
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I hear you.  These are tough times, and your courage in plowing ahead is admirable.

I think your gameplan makes sense, based on your circumstances.  If your doc will read up on the more advanced thinking about Lyme, especially Burrascano's Treatment Guidelines and other information on the ILADS [dot] org website, that will give the doc the background to know what to order.  

Here is the link to Burrascano's guidelines, which are written for docs, but accessible to anyone and understandable even to me with a bit of effort:

http://www.ilads.org/files/burrascano_0905.pdf

This may have been covered above, but fwiw:

The first tests usually done are called ELISA and Western blot, but they are known to be substantially inaccurate, esp. if you have been infected a long time.  The better test is the expensive one from IGeneX Labs in Palo Alto CA.  They are incredibly nice people (I hand-delivered my blood sample to them and was so impressed with the place:  not a grand huge expensive building, but just a little place, very kindly lady up front, and I understand the docs/founders there are the same way) and maybe they have a 'compassionate' pricing program for those in financial difficulty.  You could call them and ask.  Just google/search for the company name and you'll find the number in Palo Alto.

It's also very possible that you have other infections the same tick may have carried, and without knowing what those are, the treatment is also unknown.  A Lyme specialist could make a good guess based on your symptoms which of these co-infections to test for, and you might to bring that up with your doc.  If s/he reads Burrascano, it will give some useful information there.

Let us know what you do and how it goes, okay?  And think about asking about discounts or terms with the doc and labs, explaining your situation.  When the economy finally turns around, you can make a contribution to them later perhaps.

Bless your heart, thinking of you --


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Well I went to my Pain Doctor today and they were terrible to me.  They basically told me that I do not look like I have Lyme Disease which is so stupid.  She said that someone with Lyme Disease looks very tired and they are really fatigued and cannot do much and have a lot of aches and pains, etc.  I told her yes that fits me to a tee.  She said I just do not look like I have it.  I told her I am certain that I do.  I told her that yes I do.  I told her she did not know me 10 years ago.  I told her that I was Latin Club Princess and I was in a Strawberry Padgeant and I looked a whole lot better then.  But when my medical problems started escalating I went downhill fast and now I have dry skin, dry hair, pale skin, etc.  She basically dismissed it and told me I need to talk to my primary care doctor about it.  So I guess everyone that does not look basically like a bum on the street does not have nothing wrong with them.  That is pretty much what she implied.  Or the nurse that is. She said I do not look that bad.   I never got to talk to my actual doctor (she was on vacation).  

Therefore, I called my primary care doctor that I go to (my Internal Specialist) and spoke with his nurse and explained everything to her.  She is going to talk to him and call me back tomorrow and see about getting testing and what they can do. Another thing, when I called my primary care doctor's office and spoke with the nurse she even asked me "well, have you been bitten by a tick".  I told her yes and explained that a tick was embedded in me years ago and my dad burned it and pulled it out.  But you know I have read about people with Lyme Disease who did not even know or remember getting bitten by a tick.  I just cannot believe the reaction when I told them I am pretty sure that I think I have Lyme Disease.  People are so ignorant about it.  I am going to be persistant about this though.  I will keep you all posted.

Thanks again to everyone.  Hugs and support to all of you too.  Also, I will give this website information to my doctor.  He is a very good doctor so I am sure he will know what to do.  He is an extremely smart doctor.  He is pretty much a nerd if you know what I mean.  Keeping my fingers crossed.
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Agggh!!  It makes me crazy to hear about the way you were treated.

If your doc will read Burrascano's Treatment Guidelines at ILADS.org, it will be a very good start.

The whole thing about seeing the tick:  I never saw the one that got me, and my kid never saw the one that got her.  They are SO tiny, like a period at the end of a sentence, not like a peppercorn.  And when they are done chowing down, they just drop off, so they are easy to miss.  And the circular rash?  MANY of us never got one, or it could hidden on the scalp if that's where the tick was.  So even if you never see a tick or get a rash, you can easily still have Lyme and its companion infections.

Be strong!  Keep us posted -- we're rooting for you!
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It is amazing how stubborn some doctors can be!  I have heard people say that a doctor wouldn't test them for Lyme because they looked TOO sick and Lyme just isn't that bad.  Others say a patient doesn't look sick enough.  I am sorry, but that is the stupidest excuse for not ordering a test I have ever heard of.  That is like telling a slim woman that she can't have a pregnancy test because she doesn't look pregnant enough!

The only thing I can think is that the lyme deniers in the Northeast have been saying for years that Lyme is essentially nonexistant outside New England, the Upper midwest, and the Pacific Northwest (which they generally just ignore). I read a paper from a doc at Yale who said that any positive Lyme test in the south should be considered a false positive unless the person could show travel to a "highly endemic area" shortly before symptoms started. I think southern docs have been trained to look for a high burden of proof for Lyme.  Which is a bummer for people who have it.

Any doctor who focuses on whether or not you had an engorged tick, a bulls eye rash, or travel to Connecticut is ignorant of Lyme.  Find another one!
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It is very common for Lyme symptoms to recycle. You may think you are getting better and then wham, here comes another symptom.
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Well, I went to my primary care doctor and mentioned it to him.  He went ahead and gave me an order to have a Lyme test done but the order is not specific.  It just says that I have a diagnosis of Tick Bite.  He asked them to just order a Lyme Disease test.  There is room on there for me to add information though if I want to.  They asked if I wanted them to do the test in their office and I said no.  I told them I would have to check with my insurance to see if they cover it or not.  I was thinking about adding on the order exactly what tests need to be done (I am not sure yet what I need done---I have heard they are not doing a culture for the bacteria) and when I have the money to pay for it out of pocket, sending them off to a lab (that knows exactly how to read the Lyme tests) whenever I have the money to pay out of pocket.  And then when I have the results I will see about getting an appointment with an LLMD.  I just do not have the money yet to do that.  

What do you think???
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Hi, I am new here and just starting my journey too. I don't really know what they should test for, but I do think your plan sounds like a good one and very similar to what I will have to do. We don't have any money either. It takes everything we have right now just to make it.

Keeping you in my thoughts and prayers,
Minnie
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I don't know if you can get in trouble for falsifying a doctor's order, but it's possible.  Think what happens to people who steal a doc's pad and write their own prescriptions.  In any event, I'd think twice about doing it, bec. the doc will get the results and have a pretty good idea how it happened.  Then you've lost your doc's faith in you, besides maybe committing insurance fraud?

Putting all that aside, Lyme testing and diagnosis is not a do-it-yourself thing.  I would do the research on what tests you want done, and ask your doc to order those tests.  If he does not, then a new doc is in order.

Sorry to be a downer, but those tests are going to be pretty expensive, and if your insurance company refuses to pay, you're stuck paying for tests that may or may not tell you anything useful and ticking your doc off on top of it.

I would see what the tests the doc orders have to say, and then take it the next step with him, tell him what you've been reading and ask that certain additional tests be ordered and why.  He may or may not listen to you, but you need to be careful here, imho.
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I didn't realize (shows how well my thinking process is working) that you, proudmommy, were talking about changing the actual test orders (even though reading back I see that's what you are considering). I was referring  about your plan as it pertains to sending to the lab when you can afford it and then taking the results to an LLMD. No, don't change the doctor's actual order. If your insurance will cover the test as written, maybe go ahead and see what results you get and when your doctor explains the results, go from there as to your next steps. At least this doctor is considering Lyme and ordered a test. I am planning on talking to my pain management doctor yet look for a LLMD in the meantime. I'm so sorry for the miscommunication, my head and neck were (and are) killing me.

Hugs and more prayers to you,

Minnie
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No I wasn't thinking about changing my doctor's orders.  Because he ordered a Lyme Test and marked it as Other.  I was just going to add tests to it underneath.  I know you are not supposed to change your doctor's order.  I guess it would be bad to do that too.  I will have to talk to my doctor then about getting him to add the specific test to the order.  Hopefully, he will not have to see me again to do that.  If he does I cannot afford it (I already owe the doctor almost $100 because I have an $800 deductible that has not been met).  If he cannot change it without me being seen I will just have to wait a few months.  It is just depressing to not be able to do anything and to not have money and being in pain and fatigue and misery on top of it.  It ***** us having to get this done ourselves.  Thanks for the input.
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I don't know for sure, but I would think that altering a prescription is not okay legally, whether it's adding something or changing it.

Maybe you can write the doc a short note saying as long as you are having tests done, would he also send you test orders for X, Y and Z, because you've been reading and think it would be good just to push those possibilities off the table rather than drag things out, given how lousy you feel.  He has seen you very recently, it sounds like, and he's trying to be cooperative, so I would think he might send you an additional test order slip without seeing you again.

I find that writing something like that TO the doc works better than calling and leaving a message with staff at the doc's office, because too many of the staff don't pay attention or give a rat's behind.  There are exceptions, but it happens way too often for my taste, and they never get nailed for it.

If you're too wiped out to write it yourself, maybe you can dictate it to somebody and sign it, or type it and sign it.  If you think the doc would need convincing, you could also remind him in the note how long you have been so ill and waiting till later to do more testing is just lost time and misery if this one comes back negative.  The more rationale you can give, maybe the more likely he is to cooperate.
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For the best quality testing you might consider IGeneX.  Yes, you need our doctor to authorize tests, but since you pay up front for IGeneX tests, he might not mind signing it.  Docs hesitate when you want them to get an out of network authorization from the insurance company up front.  You should be able to just leave the authorization at the office with a note explaining why you want him to authorize the tests.

I understand wanting the tests first.  I didn't want to spend the money on the consultation with the LLMD until I was really sure I had Lyme.  I ended up doing the blood draw and booking the LLMD on the same day.  You could save money by waiting until you see an LLMD and having them order only the relevant tests.  I was so sick I didn't care about the cost and I ordered the full Lyme panel and full coinfection panel.  My insurance reimbursed me about 2/3 of it.  Best money I ever spent.

If your doc just generically ordered Lyme tests, that means the lab will run a screening test.  Only if that is positive will they run a Western Blot.  I was a false negative on the screening test.  I got my Western Blot done at IGeneX, where they showed I was diagnostically positive, even though I was CDC negative.  Most labs will only report CDC negative or positive, so you won't know if you showed other lyme specific antibodies on bands ignored by the CDC.

Sigh.  It all gets confusing, especially when doctors are uncooperative.  Funny how they can be so sure it is not Lyme, but still have no idea what we do have!
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Ugh, I know what you mean about the deductible! I'm still paying off mine, too. Hopefully your doctor will add the additional tests on the order without your having to schedule another visit. This is all so convoluted, isn't it?!

Best of luck,
Minnie
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I am waiting right now to actually go to my doctor in person like you said.  That is the best way.  It is hard to take care of things over the phone.  Plus, I cannot get the doctor to add information on my order over the phone.  I just do not have the gas money to just drive to town right now.  I know I will however have to go to town to pick up my medicine and my husband's medicine in a few days, so I will run by my doctor's office when I do that and get him to add probably a culture for a Borrelia/Spirochete.  I did some research and found out that a Western Blot could possibly have a false negative and then I would have to get tested again.  Since it may cost me a lot of money I want to just get the culture done.  Yes my doctor is really nice and if I ask he will probably just add the tests that I need.  I was not trying to do anything illegal but now that all of you say that I probably would have gotten into a lot of trouble. I just want to try everything I can because I am just in so much pain and everything.  It is so aggravating that we all have to go through this stuff.  I am sure all of you understand how it is.

I am still researching too.  I will see what I can do about getting an up front authorization from my doctor for IGeneX so insurance will pay.  How will that work?  I am guessing I would go to the doctor.  Have his office call the insurance company and get an out of network authorization.  Then I am guessing I will get a blood draw at a lab here???  And then send it to IGeneX???  Not sure how all this works.

Do any of you know whether or not Lyme can cross the placenta??  Just wondering because I have noticed that my daughter (which is almost 3 years old) is showing signs of what looks like maybe Autism or ADHD or something like that.  I was just wondering if I have Lyme that maybe I passed it to her.

You know it ***** that we pay so much in insurance (my husband pays $400 a month for insurance) and then have to pay deductibles and coinsurances on top of it.  And then because my husband makes too much money (he only gets $1,200.00 a month) Medicaid says we have too much so we are on share of cost.  I do not see how that is too much money for 4 people.  It is just such a bummer.

Thanks again for all of your help
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Re IGeneX:  You ask:  "Then I am guessing I will get a blood draw at a lab here???  And then send it to IGeneX???  Not sure how all this works."

Yes, that's the way it goes. I don't recall if IGeneX has special kits (with test tubes with certain preservatives in them) for the blood samples, but look on their website.  If not there, you can call them.  They are very nice on the phone.

Hang in there -- the hard times will pass, just never soon enough.
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Regarding your question about Lyme crossing the placenta, there are many cases of this described.  In the documentary, "Under Our Skin," a doctor says he has confirmed the presence of Lyme in miscarried fetuses.  However, the "official" dogma on Lyme says there is no evidence of this.  

Dr. Jones in CT has treated about 10,000 children with Lyme and he says he sees this often.  The children are usually developmentally delayed and show symptoms similar to autism and ADHD.  

We have a woman on this forum with this experience.  Hopefully she will see this and chime in.  I believe she said her son has been on antibiotics for 2 years and is vastly improved.
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Ok Ricobord, you really caught my attention with this. This is probably to vague of a question, but would it be possible to pass along Lyme to my son in utero, but not show any signs myself for 12 years? That sounds a little silly even as I'm writing this. Maybe a better thing to ask would be... How long can Lyme lay dormant?

I ask because my son has a controversial diagnosis named DAMP (Deficit of Attention, Motor control, and Processing). It's a combo of autistic traits, adhd, and an auditory processing disorder. Things have been and continue to be a lot of fun around here, just a little draining on me at times. I'm not in search of any new diagnosis, but this sounds like a good question for his doc the next time we her.

What do you think?

Good question proud mommy!

Good question proud mommy :)

Marell
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Excellent question, I think.  Unless your pediatrician is clued in to Lyme, tho, you might not get much of a useful answer from him/her.

Your own immune system may be keeping Lyme under wraps for extended periods of time, but the effects in utero may have a whole different effect on a fetus' developing neurological and other systems.  Your own immune system was presumably mature when you were infected; not so for a baby in utero.

You might consider, when you have the bandwidth to do so, taking your child to an LLMD who treats children -- some regular (adult) LLMDs do, I think; others may specialize.

There is some thought that the rise in autism, behavioral issues, etc. that seem so common in children these days could be due to Lyme infection.  It wouldn't surprise me AT ALL.

If it's a comfort, I know someone who unknowingly had Lyme while pregnant and her child has had some issues over the years, probably Lyme-related, but is doing fine.  Try not to worry, just take things as they come.

As I think about it, the Columbia Univ. Lyme center (see their website) has includes children in their research and practice, as I recall.  

ILADS can probably recommend pediatricians too, at their referral site:  contact [at] ilads [dot] org

There is a long-time LLMD named Charles Ray Jones, based in Conn., who has a focus on Lyme in children, as I recall.  Google his name, you'll find him.  He's out of the closet as an LLMD, so I don't worry about putting his name out in public here.  He got crossways with the Lyme police a few years ago, the story is summarized below, fwiw, since if you look him up you'll probably run across references to this making him look evil.  Generally speaking, there are pediatricians who understand Lyme, and by poking around a bit online you can likely locate some names.  

Send a memo to yourself:  do. not. freak. out.  No need to.  Things work out.

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Probation Suggested for Charles Ray Jones MD

November 30, 2007

In a decision with national implications for how suspected cases of Lyme disease are treated, a state physician review panel is recommending that controversial pediatrician Charles Ray Jones be reprimanded and put on two years' probation for his diagnosis and treatment of two Nevada children.

If the panel's recommendation is upheld next month, the New Haven area pediatrician — who gained support across the nation because of his willingness to ignore consensus treatment guidelines and prescribe long-term antibiotics to children with symptoms of Lyme — would also have to pay a $10,000 fine and pay a doctor to review records of his patients.

The decision calls into question the medical validity of treating patients who show symptoms of Lyme disease — such as aching joints and fatigue — but don't meet the criteria established by mainstream doctors.

Advocates for patients who say they have chronic Lyme disease argue those criteria are too narrow and lead to needless suffering.

But the panel from the Connecticut Medical Examining Board upheld most, though not all, of the state health department's allegations about Jones' diagnosis and treatment of two Nevada children in 2004 and 2005, which came into question during a bitter custody dispute.

Jones prescribed antibiotics to the son of Jeffrey and Robin Sparks and told the boy's school principal that he had diagnosed late-stage Lyme disease without having seen the boy, the panel found.

Jones also prescribed antibiotics to the Sparkses' daughter before examining her.

When Jones finally did see the Sparks children, he persisted in his diagnosis of Lyme disease for children without compelling medical evidence to support his diagnosis, the three-member panel found.

"The respondent diagnosed a disease when the exposure risk was extremely low, medical history was non-specific, the signs and symptoms were non-specific, and the laboratory tests were negative," the panel found.

Jones defended his actions, saying he has successfully treated thousands of patients with Lyme disease.

The panel's finding, which will be reviewed next month by the full board, goes to the heart of a bitter feud over Lyme disease.

The majority of medical experts say there is little evidence to support the idea that Lyme disease, if treated properly, will nonetheless continue to cause ongoing symptoms, a view that has been bolstered by the treatment guidelines issued by two medical associations for the disease.

There is no good evidence, these doctors say, that extended courses of antibiotics have long-term benefits for patients with Lyme-like symptoms. And symptoms experienced by these patients are more likely attributable to causes other than a lingering infection from the tick-borne pathogen.

But advocates for Lyme patients insist there is abundant evidence that the bacterium that causes Lyme can persist for years, even after initial antibiotic treatment, and often eludes detection by existing tests. They believe that thousands suffer needlessly because their doctors do not recognize clinical signs of Lyme and refuse to prescribe long courses of antibiotics.

Members of the so-called long-term Lyme camp crowded Jones' hearings, which lasted more than a year, in support of the doctor. They raised money to aid in his defense.

"Dr. Jones is being charged with improperly diagnosing and treating Lyme disease after having treated and cured two children whose health was of great concern to their mother for years," said Jones' attorney, Elliot Pollack. "Instead of being sanctioned, he should be complimented."

Jones treated three of Maggie Shaw's children for Lyme disease and all got better, the Newtown mother said.

"My concern is not only for my kids, but how will this affect treatment for all children," Shaw said.On the other side of the divide, the decision was well-received by the doctors who argue that treating patients with Lyme-like symptoms with long-term antibiotics is not only misguided, but can lead to a failure to properly diagnose other ailments in those patients.

"This decision sends a message to a very small cadre of physicians who do not conform to standards of care for diagnosing and treating Lyme disease," said Dr. Lawrence Zemel, chief of rheumatology at the Connecticut Children's Medical Center in Hartford and professor of medicine at the University of Connecticut School of Medicine.

That view was bolstered by a recent review in the New England Journal of Medicine.

In addition to the fines and probation, the panel is recommending that Jones hire a doctor to review his treatment regimens quarterly while he is on probation. Future misconduct could lead to a suspension of his license.

The full board is scheduled to review the findings on Dec. 18. It can confirm, reject or modify the findings of the panel.

To read the board's findings, visit www.courant.com/lyme.

Source: WILLIAM HATHAWAY | Courant Staff Writer
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This is so interesting. We have had certainly had our ups and downs with my son and his struggles, but we have everything under control now and life is good. My son is such a riot and cracks me up all day in the WAY that he says things. So innocent and he usually has some crazy spin on things that I would have never thought about. The only remaining down side here is... My son has this temperment in which he gets stuck on an issue and will not let it go. I mean, we can talk about the same issue for the entire day and despite me 'trying' to be patient and explain the situation in a way he can understand, he will not stop. His doc says this is called perseverating, I say it's like like living with a 12 yr old defense attorney who has nothing better to do than argue his point all day :).

One thing that is incredibly difficult especially at school is his auditory processing disorder. The way his brain is wired makes it diffiuclt to correctly interpret in-coming info. Words get broken up in funny ways so things don't always make sense to him the first time. Repetiive instructions help that some.

This discussion makes me wonder if Lyme could be a contributor here with my sons autistic traits and language disorder. Whether Lyme is or not, we are doing just fine and have fun together every day. But it is absolutely something I plan to follow up on.

Thanks for the resources you offered. I will look into Columbia and ILADS sites. It really does make some sense, at least to me, after thinking more about it. After going through the past 6 months and all of my neuro symptoms, I was surprised to learn that Lyme can be sooo devastaing on our bodies. If what is going on with me is Lyme, then a possible tie in with my son is going to be investigated. You said it best when talking about a baby's iimmature  and developing systems in utero.



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I know several people that have passed it in utero.
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Good, glad you have some ideas for follow up.

I've always been bad at remembering things I've been told, like a series of steps to take to get something done.  I have to SEE it written down and not just be told what to do or get.  If I'm told "Get me some milk, tuna and bread when you go to the store", I'll get to the store and have zero memory of what I'm supposed to get.  But if I write it down, I can remember it because I can visualize the list later, even without the paper in hand.

So everyone processes information differently, and with a layer of Lyme on top of it, it would be even harder.

Take care, keep your spirits up, and let us know how you and your son do, okay?  There IS life after Lyme!
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Yeah I know what you mean Jackie.  I have such a hard time remembering things.  I have had many people tell me that I am just a little forgetful.  It is more than just a LITTLE forgetful.  It is true memory problems probably because of the Lyme (If I find out I have it).  I cannot remember things in the store either.  I ALWAYS forget what I am supposed to be getting.  I get everything except what I was supposed to get.  And when I write it down on a piece of paper I always seem to lose it.  I do better though when someone shows me something on paper or manually.  I have a hard time visualizing something when someone just tells me.  That problem has also gotten worse over the years.  I hate it because in college I used to remember EVERYTHING.  I was so good.  It is sad we have to deal with this.  That is why I lost my scholarship.  It *****.  I can really relate to all of you.
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If I were you, I would book a consultation with an LLMD with knowledge of children born with Lyme, and indicate you'd like to include your son in the consultation.  It might be a longer appointment, but I think it is worth getting checked out, even if it's just the slightest chance that he does have Lyme and could improve with antibiotics.
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