lyme symptoms

[drsdonthelp]

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]

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

[Ness78]

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

[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.

[JackieCalifornia]

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

[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!

[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?

[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.

[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.

[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.

[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!

[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]

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

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!

[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.  

[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.

[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!

[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??

[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!

[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

[ree427]

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

[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 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.

[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?