in limbo

[kelbel3078]

HI everyone.  I am a 31 yr old female.  For the past 9 months I have had pretty severe symptoms that my Dr's can't explain.  They seem to think that it is an auto immune disorder.

I have neruopathy in my hands and feet.
I get pretty severe pain mainly in my left side.  
My hands just don't work right
horrible fatigue
stiff/painful neck
L'hermittes
cog fog
severe weakness in my arms, hands, legs and feet
feeling like there is bugs crawling all over me (parasthesia)
blurry vision/double vision
visual snow
I have had episodes where my fingers would swell and my eyes/face were puffy.
I do get a lot of headaches/sinus issues

the attacks come and go.  The longest period of relief has been for just under 2 wks.  When I have releif most of the symptoms stay, but are mild.

I have been thinking maybe MS. All my drs say my symptoms lean towards MS but my MRIs and LP were normal.  Someone pointed out that this could be Lyme.  I did test negative twice.  

If this is Lyme it is probably in the later stages, so what can be done?  Is there something that can make me better if it is Lyme?  Or is there just something that can be done to stop it from here?  I want as much info as I can get so that I can talk to my neuro about this.  

I just want to get better.  I have 2 really young kids and it is so hard to give them what they deserve.  I am trying my hardest, but with my pain and fatigue they are not getting the whole mother they deserve right now.

Thanks

[gorbybelle]

my  advice would be for you to find an LLMD. [lyme literate doc.] - lyme can sometimes only be diagnosed clinically - the tests are very unreliable -

you should get plenty of knowledgeable advice here about how to locate an LLMD.

your symptoms certainly sound very 'lyme' like - esp. since your other tests have come back normal - do you recall a 'bite' or 'rash' ?

[kelbel3078]

I don't recall finding a bite or a rash, or even finding a tick on me.  There are a lot of ticks in this area though.  We used to hike and camp a lot, until we had our daughter 3 years ago.

Thanks for your advice

[mrs_k75]

Hello,

I was in a similar as you and I have had a lot of the symptoms you had listed come and go for the last 10 years. I was pregnant last year and I never felt better in my whole life and then all my symptoms started 3 months after giving birth. I was bitten by a tick and had a bullseye rash 20 years ago. I went to an LLMD finally thanks to this board. I am getting treatment. It is hard to say in your situation, but I also tested negative on the regular Lyme test eventhough I had this rash and have neuro symptoms. There is further testing that can be done, but it is not recognized in the medical mainstream world. MS is a difficult one to detect too, MRI's don't alway catch it. So far I am diagnosed by my Rheum as having RA so I have to get further tested for that as well.

[JackieCalifornia]

Sorry to hear about your situation.

Many of us do not recall a bite or a tick or a rash -- estimates vary, but perhaps half of Lyme patients do not ever see or recall these events.  (Including me.  My neurologist refused to test me for Lyme because he said I didn't 'look very outdoorsy' -- which I'm not, but you don't have to be Woodsy Owl to get Lyme.)

There are also coinfections that are carried by the ticks that also carry Lyme -- the coinfections complicate diagnosis and have to be tested for separately (babesia, bartonella, ehrlichiosis).

Lyme testing is not terribly accurate and misses many genuine cases of Lyme, so diagnosis needs to be made based on symptoms along with testing.  The fact that you twice tested negative for Lyme actually is not definitive in the view of those who work in the area of Lyme full time.

Further, many MDs adhere to the position of the Centers for Disease Control (CDC) regarding Lyme, which is that it's a disease that is easily cured by a couple of weeks of antibiotics, while other MDs (LLMDs as mentioned in a message above) take a broader view.

You ask:  "If this is Lyme it is probably in the later stages, so what can be done?"  Antibiotic treatment for an extended period is what an LLMD would might prescribe -- and there are many who have had Lyme much, MUCH longer than 9 months before diagnosis and treatment.  

Neurologists are often not inclined to consider Lyme.  You know the old saying that when the only tool you have is a hammer, then every problem looks like a nail?  Well, it applies here to neurologists too -- Lyme isn't in their vocabulary.  If you go to your neurologist for Lyme testing and treatment for Lyme, it might not be definitive, both because none of the tests is not very accurate, and also because the labs that nonLLMDs use do not do as thorough an analysis as another lab often preferred by LLMDs.  You could keep getting negative test results and still have Lyme, which is why an MD who recognizes the symptoms of Lyme is critical to a correct diagnosis.  (It's not unusual for us Lymies to feel better and then worse in waves -- it's different for everyone, but it has to do with the bacteria's life cycle I think.)

Treatment is usually with antibiotics, and the CDC position is that a few weeks is enough.  The LLMD position is that longer treatment is usually necessary because Lyme bacteria can hide in the body and be difficult to kill.  LLMDs also know to look for coinfections.

It is good that you seem to have a good relationship with your neurologist, but consider that you may also want to see an LLMD for another point of view.  An LLMD can be any kind of doctor (internist, GP, infectious disease, even a neurologist!), but has to be one who sees Lyme as a more serious disease.  If your neurologist has not thought of Lyme until recently, I would guess he's not an LLMD-oriented person.  Neurologists generally have a reputation as not being disposed toward diagnosing Lyme.

If you google 'how to find an LLMD' you may find someone near you.  You can also check the website for ILADS-dot-org, which is an organization founded by LLMDs.  Getting an appointment can take a while, so if you decide to pursue this avenue, don't delay in making the call.

There is a whole world of Lyme out here that the medical profession is having a great deal of difficulty recognizing, for a bunch of political and historical reasons I won't get into here.  But it means you have to be aggressive about finding help from those who do recognize the seriousness of Lyme, to ensure that you receive a proper diagnosis.

Everyone's symptoms are a bit different, and they change from day to day for many of us too, but your symptom list contains many familiar descriptions to those who post here.

None of is a medical professional (as far as I know), so this isn't medical advice, but friendly advice to wish you well and hope you find the right help.  

Let us know how you do, okay?  Take care.

[kelbel3078]

Wow thank you all for all of that information.  I did a search and I already found a LLMD that is about 40 mins from me.  I am going to call in the morning and see if I can get in.  It looks like there is 4 LLMD's in that area, so hopefully I can get in with one.  

I really appreciate all of your help.  It means a lot, and it gives me some hope.

[wonko]

Hi there, I think I saw your journal entry the other day.  Glad you came to hear the advice of others on the Lyme forum.

In addition to the above advice, you may want to chose an LLMD that is an ILADS member.  I think JackieCalifornia already mentioned the ILADS website.

For me, my Lyme diagnosis was largely based on exclusion, history, and symptoms:  I had been tested for everything else.  I thought Lyme had been ruled out, because I had two negative ELISA's and my CSF was also negative for Lyme during my LP.  But then I learned how worthless the tests are.

I also don't recall the bite, never had the "bull's eye" rash, and am anything but an outdoors person.

Anyway, you may also want to check out the book "Cure Unknown" by P. Weintraub and the documentary "Under Our Skin."  Both have informative websites, you can read part of the book and watch the movie trailer online.  You can't get the movie on DVD right now because it's playing in select (big city) theaters, but most libraries should have the book.

I had obvious symptoms for 1.5 years before my diagnosis, and probably had a dormant infection for years.  I had mostly neuro symptoms, very similar to what you listed in your journal.  I'm 7 months into treatment and not out of the woods, but seeing light at the end of the tunnel.

Of course we can't diagnose you, but I'm glad you're willing to look into this further.  The controversies surrounding this disease from testing to diagnosis and through treatment makes it very difficult to pursue as a possibility.
  

[patsy10]

Welcome to the lyme forum.  Your symptoms are very similar to what mine were and still are at times.  All my tests were normal too...LP, MRI's EMG's, VEP's, Lyme etc...I was convinced I had MS.  I saw 6 neurologists and none felt it was MS.  I did have the bullseye rash.  I was treated with antibiotics more than once with great results.

You've gotten very good advice .  Please keep up posted on how you are doing.