Lyme Disease Community
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Avatar universal

lyme symptoms

Hi everyone, I know its been awhile since I last posted. Hope everyone is well. Anyway, with all of the research I have been doing regarding my having cat scratch fever 22 yrs ago and possibly being infected with lyme disease I have come across some questions.

Have any or all of you had chronic sinusitus?
Do you get Lhermittes sign?
How many have hand tremor on one side?
Slurred speech?
Seizure disorder?
Really horrible pain in the stomach if you hadn't eaten in a while??? Excruciating hunger pains? Don't know exactly how to explain it, I have been doubled over in pain if I do not eat when I am hungry.

Spastic muscles, twitching thumb and other areas on my body along with buzzing feeling.

This is all so crazy to me. I need to get some info. on Igenex? My other tests were negative, so I was told its not lyme, but with everything that you guys told me and what I have read, these tests are inconclusive most of the time.

I appreciate any info.
Thanks everyone!!!
38 Responses
Avatar universal
  Yes, find that LLMD and get the Borrelia burgdorferi  western blot, also get the coinfections test.  discuss what symptoms you have ie tiny red spots on your trunk, or some on limbs, headache closer to front, eye pain and ankles hurting is more indicative of bartonella.  Babesia symptoms are shortness of breath, retching (throwing up/dry heaves) You also might have an infectious mycoplasma infection as well.
Avatar universal
Thank you so much for your reply. I can honestly say I have never noticed any red spots or such but again that was sooo long ago. When I was diagnosed with cat scratch fever, I was set to have surgery on a lymph node that the doc. believed was hodgkins but came back as cat scratch fever. All that was done was removal of the lymph node behind my left ear.

I do get the eye pain, but just recently had to be put on antibiotics for a sinus infection. I just had sinus surgery in Feb. along with orbital implants and still to this day, my right side of my nose is numb, I still can't breath through my right nostril, and not sure if the sinus problem is going away because I am still plugged up.

As far as the pain in my stomach, I was always told it could possibly be my gall bladder, but  I feel the pain in the center of my stomach down to the left lower portion. I haven't felt queezy or shortness of breath, just pain.

About a month ago, I had swollen lymph nodes in my left inside elbow and under my left arm pit. Never went to see my doc. about it, it just went away.

Is it common for people to get lyme along with cat scratch fever.?? Just curious and thanks again.
Avatar universal
Igenex is a lab in California that has developed a PCR test, which looks in the blood for DNA of the Lyme bacteria, rather than relying on measuring your immune system's reaction to a Lyme infection, which is what the traditional W. blot and ELISA tests do.  My Lyme doc used all three tests, because the more data, the better.

NonLLMDs don't use the Igenex tests, because they believe the W. blot and ELISA combo is sufficient.  After you've been infected a while, your immune system gives up making antibodies against the infection, figuring that the bugs must be wiped out, but Lyme has the ability to hide in the body where the immune system can't detect it, and so it looks like the infection is indeed gone when testing with only W.blot and ELISA, which look only for antibodies, not for the bits of the dead Lyme bacteria as the IGeneX PCR test does.  These are all far from perfect tests, and yet too many MDs rely on them as gospel.   That's just one reason seeing a Lyme specialist is important, because an LLMD generally practices medicine looking AT the patient instead of only AT the chart..

Everyone's symptoms are different, which is also why an LLMD is important.  You could have more than one infection, as maybe half of all Lyme sufferers do.  Which infections those may be would be determined by physical exam, symptom history, and test results.  The symptoms may overlap and come and go, so it takes an experienced and observant doc.

There's no point imo to talk a regular, nonLLMD doc into ordering an IGeneX test, because the doc likely won't believe the results or act on them.  It's like reading a foreign language.

No one here is medically trained as far as I know, so take what you read here with a grain of salt.  The first thing I would do is find an LLMD and get an appointment.

I see you are often on the neurology medhelp site.  That makes sense, but also be aware that neurologists (along with infection disease docs) are the in the forefront of denying Lyme as a serious, long lasting, widespread illness.  I went through a bunch of docs, including a few neuros, and none of them got it.  One actually tested me for Lyme, and it actually came back mildly positive, but the nice doc reassured me that I couldn't possibly have Lyme, because, as the doc said very gently:  "I have patients with Lyme, and they are all near death."  Just great.  

To do list:  (1)  Find an LLMD.  (2) Take copies of your past test results as available.  (3)  Keep us posted.  (4) Plow ahead and take care.  I know where you are in all this ... I was there once too.
Avatar universal
Bartonella IS cat scratch fever.  But the Lyme docs are saying that there are "BLO's or Bartonella Like Objects" as Dr burrascano points out.  So it is VERY possible you have Lymes and you know you have had a coinfection that is common.  jackie is right.  She gives good advice.  We are NOT doctors, but we can offer better advice than the docs that ignore/deny this infection.  Good luck! and let us know what transpires.
Avatar universal
You guys are so awesome!! I totally get it when you say how easy it is that docs. dismiss this.  I don't understand why because so many people suffer with this daily and its just not fair. I was watching videos on youtube about people and their dx and symptoms and the h e ll they have gone through and it breaks my heart.

With your honest opinion (since you are not a doc :) )  would all of my symptoms be considered in the chronic late stage or am I reading all of this wrong. It is so darn confusing.

Thanks Jackie ,
I will not give up, I thought with the last test saying negative abut lyme than that was it, but now I will look for an LLMD.

Avatar universal
I said this over in the ms forum....... "Why can't a place like this be considered a second opinion" because here,,,, we are heard, symptoms sorted out and we are not looked at as anxiety head cases! LOL
Any more info you can give, I will take, I will keep coming back!!
Pam :)
Avatar universal
Go to Youtube and search for a video about Dr Lida Mattmann, a Yale PHD, researcher/professor that verified that Lyme spirochetes can change shape and exit out of blood cells into tissue.  Also look for a series of videos by Open Eye Pictures  called "Under Our Skin" and watch the 5 videos about Lyme.  you will be shocked  
Avatar universal
About what stage one is in -- chronic, late, early, whatever -- I wouldn't worry about it.  The sooner any infection is caught, the quicker the cure, but Lyme is always treatable...it's just a matter of how long it takes to track all the bugs down and annihilate them.  The longer the time of infection, the more entrenched the disease, but that's true of a lot of things.  Bottom line, there's no point at which I would not try to treat and get well.  Lyme is a fast changing area of medicine, with new things learned and developed all the time.  

There is a renowned Lyme study and treatment center at Columbia U medical center in NYC, headed by Dr Brian Fallon.  Their website always makes me feel better just by reading it, because it shows how much effort and brain power is being put into unraveling the mysteries of Lyme.  The 'Lyme deniers' who too easily dismiss our illnesses and suffering just fade away by comparison.

An old friend of mine, who got Lyme way before it was even recognized, sent me a little magnet for the fridge when I was diagnosed.  It quotes Winston Churchill:  "Never never never quit."  I see that every day in the kitchen, and I absolutely believe it.

The movie 'Under Our Skin' that ewford mentions is certainly interesting, but don't be alarmed by it.  The film maker was making a point about the orphan nature of Lyme and its sufferers -- as if it's not bad enough being so sick, we have to put with being told we're not.  I saw the film when it was first out, in an art theater near here.  After the showing, the director and several of the real people whose cases are followed in the film went up on stage and took questions.  It took me quite a while to connect these healthy-looking and energetic people with the wasted wrecks in the film -- so don't be too alarmed if you see it.  There are certainly people who suffer and fade away, but that's why there's TREATMENT!

If you're up for reading, I strongly recommend 'Cure Unknown' by Pamela Weintraub, a trained science journalist whose family got Lyme in the leafy burbs of Connecticut, and the journey they made to getting well, interspersed with readable chapters on the science and politics surrounding Lyme today.  I don't like the title of the book, because Lyme is treatable and curable -- maybe she was referring to not knowing how to cure the 'Lyme denier' docs of their stubborness.  Ha.
Avatar universal
.... and PS, ilads [dot] org, if this isn't mentioned above, under the tab 'about lyme', third item down, are Dr Burrascano's 'Diagnostic Hints and Treatment Guidelines.'  It's quite readable, but don't be overwhelmed by it.  I find hard data reassuring, compared to the mush we get from nonLLMDs.
Avatar universal
  I am in the middle of Cure Unknown.  It is a very eye opening fact filled book that shows just why and how we got "orphaned" and other insights.  Highly reccomended.
Avatar universal
Jackie and ewford,,,I can't thank you guys enough!!! I will be downloading some new books on the iPad tonight !!!! :))) I am thinking more and more towards Lyme since my neurologists say nothing is showing up on MRI.
One more question lol.... Does any else get bad stomach pains if they haven't eaten when they feel hungry??? I know it sounds like a weird question but no one I know has ever had the doubled over pain I have had.

I can't wait to get my books!!!

Thanks for helping me out!
Avatar universal
Everyone's a bit different ... and it also depends on what co-infections might be present.  

I just searched on google for

                                            Lyme disease stomach

and got a lot of hits.  Lyme has different symptoms in everyone, and different in the same person over time.  I know someone (later diagnosed with Lyme) who always had stomach pains the docs couldn't figure out.
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