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?
hyperreflexia?
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!!!
Pam

[ewford]

  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.

[drsdonthelp]

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.
Pam

[JackieCalifornia]

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.

[ewford]

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.

[drsdonthelp]

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.


Pam

[drsdonthelp]

Ewford,
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 :)

[ewford]

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  

[JackieCalifornia]

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.

[JackieCalifornia]

.... 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.

[ewford]

  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.

[drsdonthelp]

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!
Pam

[JackieCalifornia]

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.

[ewford]

I'd get stabbing pains as if someone knifed me.  Sometimes the pain doubled me over and I'm 6'3" 265 lbs and can take pain pretty well.  Also I would have times it just plain hurt badly.

[drsdonthelp]

Jackie and Ewford,

I downloaded my book "Cure Unknown" last night. Having a hard time reading with 2 kids bouncing off the walls and my eyes tracking is so distracted that I keep reading the same lines over and over again.. LOL

More and more I am believing that all of my ongoing symptoms have been related to lyme. I am also so very concerned for my children because of this.

My son who will be 8 in Sept. had a horrible rash when he was 2 1/2 yrs. old. My hubby and I had to cut our honeymoon short to return home because of our worry for him. Since that time, he has complained of headaches, he mixes up his words when he is talking, (combines words together) complained of his legs falling asleep while sitting on the toilet too long,LOL, asked me just last night if he had a bug stuck in his hair because his head was vibrating.

He has gone from being the quietest little baby, to a very , very hyper active child that I am in shock over some of the things that he does and says, (could be typical 8yr. old boy stuff) but I did a psychological test to check if he had ADD or ADHD and lo and behold, his numbers were off the chart!!

As far as my daughter who is 5, she was born very jaundice. I barely saw her while we were in the hosp. because she needed to be in the "baby tanning bed" can't think of the name of it right now, LOL She then had oral thrush when she was jjust about 1 yr. old. She has had a lymph node in her neck that has been swollen since birth, I brought her to an ENT and he said, "it's not anything to be concerned about" Thank God!!!!

Both of my kids teeth have had problems. My son's teeth were so weak that they were breaking away, and my daughter's teeth had weakened enamel. So far, my son's second set of teeth are beautiful Yay!! My daughter is still without upper front teeth , my poor baby girl. I am a lunatic about their teeth. Constantly on them all the time about brushing , flossing and eating xylitol to help break up the acids that are killing the enamel.

Soooo..... I am a worried mom,,, I am scared about my health and if I may have infected them in anyway... and its truly difficult to have anyone else understand how I feel everyday because I keep alot to myself so I don't sound like a constant chronic complainer. I am still upbeat and try to stay positive, because I am not dead, and I need to keep living.

Thank you both soooo much, I am sure I will have more questions, and I hope I don't annoy anyone , LOL

Hugs,
Pam

[ewford]

Pam, I am concerned for my children as well since my 13 yr old is sunlight sensative, has been sleepier than normal and flatuates constantly.  My 9yr old flatuates as well, is becoming more OCD, and complaining of stomach stabbing pains.  Last week he threw up in the car.  

  Dr Nicolson says it is not uncommon for whole families and even pets to become ill.  I am concerned now that I had found our Lab drinking out of the toilet and Nicolson said this bacteria can and has been found in mothers milk, urine, tears, placental blood and semen/vaginal fluids.  And doctors still have no clue.

  Dr Nicolson has PDF files avail ffor downloading off of www.immed.org for Mycoplasma information.  I DO know that people that have Lyme/Mycos have problems with their teeth which dentists would explain away as Periodontal disease.  How is your husbands health?

[ree427]

I get very severe stomach pain which has me doubled-over at times. I had an endoscopy and it showed my gut was extremely inflamed. I attribute this to the Lyme and/or co-infections. It just adds to the many joys of this disease. I hope I get better some day, but so far there has been no progress. I just think I haven't hit upon the right treatment yet.
As far as children and Lyme, I learned about this at my last support group meeting.  There was a mother speaking about her three children with Lyme who exhibited symptoms of ADD, ADHD and OCD. The good news is once they got treated for Lyme, those symptoms diminished. Perhaps you should get your children tested also. I understand your concern as I am a mother of a 4 month-old who I am afraid will come down with symptoms some day. So far he is healthy, but there is always a fear that I passed this to him during pregnancy.
As far as the Mycoplasma infections, I have at least one of them too. It was found in a simple blood test. Good LLMDs will test for these infections also. Dr. Nicolson studies these infections and has great information. He is also a very nice man to talk to if you have questions. I have great respect for him.
I agree with everyone's advice here. They give great advice.
Hope you feel better soon.

[drsdonthelp]

unfortunately, his are not his, he is not too happy about that.  I have asked the dentist before if it's in the genes and he said it could be. Who knows. but anyway, Ewford you are very knowledgable about this and I appreciate all of your feedback.

Have you heard of anyone that has had slurred speech that lasts for two weeks? My EEG's are abnormal and the doc. says I am having simple partial seizures. He named  my cause as epilepsy, but I do not recall having any type of seizure in my life. The slurring started in my early 20's, first it would last a day, then it would be gone. Come back few yrs. later last a day and then go away. Since I was dx'd with Graves disease, I have had it three more times each lasting 1 to 2 weeks, but separated by a year. Does lyme present this way?

Can you have "dead legs",.... I could feel my legs, but to move them on their own was impossible to do. I had to lift them up by my hands to roll over in bed. It happened for just that night. I fell asleep so i don't exactly know how long it lasted.

I am going to try to check out all of the sites you and Jackie have listed. My kids finally went to bed and I have some quiet time.

Thanks for everything,
Pam

[ree427]

I forgot to mention that it is common to have dental problems with Lyme Disease and other tick-borne illnesses.

[drsdonthelp]

Thank you for replying. This stomach pain that you get, is it before you eat, or just any time of the day?
Mine only happpens if.. say my whole family is getting together and contemplating on where to go, what to eat, blah blah,,, and I am sitting there saying, I dont care what we eat, but we need to eat now because the pain is starting in my stomach. It has ruined my entire meal before, because once it starts to hurt, it doesn't let up. I literally have to go lie down with a heating pad.

Thank you so much,
Pam

[ewford]

With me, it can happen whenever.  Stabbing pain or a really bad bellyache.  You live in NY wich is epidemic for Lyme.  I would personally concentrate on the Borrelia causing ALL of your symptoms instead of trying to mix and match.  Slurred speech, not finishing sentences, blank stares, mental confusion are all signs.  keep reading Cure Unknown and go to Amazon and buy the E video version of "Under Our Skin".  Whatever you learn, pass it on to help others that are floundering in missdiagnossis.  Good Luck Pam!

[ree427]

Pam,
My stomach pain can happen whenever. It seems there is no rhyme or reason. I suppose that is because of the inflammation. I am suppose to go gluten-free but been having a terrible time with it. I also get some stomach pain from one of the antibiotics I take. Oh, such fun!
So, are you saying your pain is relieved after you eat??

[drsdonthelp]

Hi ewford, I'm on it!!! I just found out from my mother in law that her niece (whom is a nurse for a pediatrician) said there have been 3 new cases of lyme disease!! Just last week in our local newspaper, there was a segmant regarding lyme and how to prevent it.

Signs , signs everywhere are signs, (In my singing voice) !! LOL

I am probably getting ahead of myself alittle, but there HAS TO BE AN ANSWER, AND I THINK THIS IS IT!

[drsdonthelp]

If my pain starts before I eat, then I am in too much pain to even eat!! It really S U C K S!!

I have just been on erythromicin (sp?) for a sinus infection, and I have had lovely diar.e...ahhhhh every morning, some pain in the stomach but not as bad as the pain I get if I don't eat.

[JackieCalifornia]

about Graves disease ... Lyme often causes thyroid problems, by what mechanism I don't know, but it's something to keep in mind and be sure to talk to your Lyme doc about.  

[ewford]

Now find the ILADS dr and get going on this.  When you have time, go to the medhelp Fibro page, or Autoimmune page, or MS page, or Lupus and see THEY ALL HAVE THE SAME SYMPTOMS.  Is this making more sense to you?  if it is, you are ahead of the game.  Most people will be stuck in their diag and never think it could be anything else.  So they take pain meds and steroids and wonder why they never get better.  They are neglecting the ROOT CAUSE of their problem....a bacterial infections that standard doctors have no clue about.  Glad you had the "ding ding ding" moment.  Now go get better.  And tell others and help them!

[drsdonthelp]

Hi Jackie,
Thanks, and I have been thinking about mentioning this to my endo. also because a couple months ago, I actually had my endo. his NP and my GP all ready to send me to NIH in Washington, DC. Nothing has happened yet, but if I can have him set me up with an LLMD than that would be great!

[ewford]

Jackie, i still have those PDF files for nutracells if you want them

[drsdonthelp]

LOL LOL, too funny!! I am going, I promise!!! My body needs me too!! I honestly get p'd off if a doc. tries to tell me its fibro... I DO NOT BELIEVE THEM AT ALL, I just roll my crooked eyes and say yeah ok, see ya!

[ewford]

Save your NIH visit .  See Jemsek in Washington instead.    I just got my evaluation back from Jemsek appt that stated in patient profile that I was an "extremely intelligent, well informed and investigative patient."     That made my day!

[ree427]

Pam,
You may want to consider taking probiotics since you are taking an antibiotic. Maybe that would help with the diarrhea.
Lyme does often cause thyroid problems. I have known people with Lyme including myself with Hypothyroidism and Hashimoto's Disease. I haven't know anyone with Grave's and Lyme, but it's something to consider.

[ree427]

Ewford,
What a great compliment! If I don't start seeing progress soon, I am going to see Jemsek!!I'll give it a few more months until I totally lose my patience.

[ewford]

Jemsek was shocked that I had spoken to Nicolson and e mailed back and forth and that I had convos with Dr Mirkin who had been treating mycos w/ ABX for a long time.  Seems Mirkin and Nicolson go way back.  Mirkin told me Nicolson was an BRILLIANT man that is lightyears ahead of medical science and has been persecuted for his research and discoveries.

[drsdonthelp]

It looks like I am going to have to mention Jemsek to my Endo.

ewford, you spoke to this dr?  Is this something I can do too?

[ree427]

Sorry to say that I am not familiar with Dr. Mirkin, but have spoken to Dr. Nicloson via e-mail. Wonderful man. Didn't I hear he got death threats for his research and had to relocate?? He still didn't give up. What a trooper!

[JackieCalifornia]

Thanks for the offer of your vit&supps list -- I'm deep underwater with work, so no time now.  But thanks

[ewford]

Drsdonthelp@Ree

Google Dr Mirkin, I think he's at www.drmirkin.com.   You can find info on Jemsek at www.jemsekspecialty.com    Yes, Dr Nicolson and his wife were both threatened and his boss was found dead after he was going to blow the whistle on weaponized mycoplasma.  If it wasn't for my conversations with Nicolson and Mirkin, I never woulda figured my illness out.

[Ness78]

I am kind of afraid to open the can of worms...but what the heck is weaponized mycoplasma?

[ewford]

i sent you a pm.  for a further indepth review, search for dr garth nicolson/project day lilly