I will give the major symptoms that have come and gone over the last year. Please tell me if it sounds similar to your experience:
1. Toe numbness 2. Wide spread twitching. One or two hot spots 3. Neck pain 4. Bone pain (finger, hand, ribs) 5. Sub Acute Thyroiditis 6. Vitamin D Deficiency 7. Elevated Serum Vitamin B12 8. Fatigue 9. Random muscle aches 10. Muscle cramps, mostly in calves and feet. 11. One white spot on brain MRI. No inflammation, as per infectious disease doctor 12. Clean EMG and nerve study 13. Negative Western Blot (.16 whatever that means) 14. Chronic sinusitis 15. Pain in feet 16. Insomnia 17. Palpitations 18. Excess saliva 19. Inconsistent blood pressure 20. My dog tested positive for Lyme 21. Tinitis 22. Most blood tests normal
I had a period of fatigue, low grade fever, gastro symptoms, high BP and insomnia that lead into this.
Posted by KimC (Member # 44257) on :
Insomnia - I was up for 36 hours straight a couple of weeks ago - but normally I get only 3 to 4 hours a night - keep waking up - WIDE AWAKE Stiff neck w/ migraine daily Sinus stuffiness and headaches (on pain meds for that as doctors say I am fine) charlie horses in my calves - only at night Foot pain - feels sore in the soles of my feet Random muscle aches - worse at night and I only sit all day at my desk at work. Also the creepy crawly feeling. No Western Blot for me because the first test that my regular doctor did came back negative - going to see a LLMD next week. Posted by surprise (Member # 34987) on :
Please check for Bartonella co-infection- get an LLMD.
Adding magnesium supplement will probably be very helpful as well...
Posted by TF (Member # 14183) on :
Yes, paulvan, your list of symptoms looks very typical for a lyme patient.
See pages 9-10 of the Burrascano Lyme Treatment Guidelines for his list of symptoms. The Guidelines are here:
You will see numbness, twitching, neck pain, muscle aches, fatigue (not a good enough word for it), insomnia, and heart palpitations listed.
Lyme affects the sleep center of the brain. That is how it causes the terrible insomnia we suffer.
And, my routine blood tests were all normal for the 10 LONG years I had undiagnosed lyme disease. That is because lyme does not typically show up on routine blood tests--they don't test things that lyme affects.
The Western Blot can miss half or more of all lyme cases, especially if done by Quest or LabCorp. The lyme specialists use Igenex which is a tick-borne disease specialty lab in California. They get better results, but still the WB can be negative.
You see, this test is not looking for lyme in your blood. Instead, it is looking for lyme antibodies in your blood. So, it is an indirect test.
If your immune system is fooled by the lyme so it is not making antibodies to it, then you will get a negative test. That is just one way a negative happens. There are lists of 27 or so ways a negative can happen. So, don't be deterred at all by this.
Pain in feet is often a symptom of a lyme coinfection (an infection seen frequently with lyme) called bartonella.
Read about this on page 24 of Burrascano. Here are some bart symtpoms:
"Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles, especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore."
Bartonella and babesiosis are 2 coinfections that most lyme patients always have. Bart causes lots of gastro symptoms. It gave me unbelievable abdominal pain, but the ER did a full body scan and nothing could be found. Colonoscopy showed nothing also. That is bartonella for you!
See page 28 where Burrascano says to take magnesium to relieve the twitches and muscle aches. Get the good magnesium he recommends--Mag-TabSR. Order it on line. The stuff on store shelves is useless.
You should see a difference in a week!
On page 30 he recommends Vit D. Read that discussion.
Regarding your MRI, it is common for lyme to cause these spots on the brain. I had 2 UBOs (unidentified bright objects) show up on my brain scan.
New Jersey is full of lyme and you know your dog has it, so it looks like you have made your own diagnosis. Congratulations on that. Now, get a great lyme doctor to help you.
If you would like my suggestions on doctors, send me a private message. Just click on the envelope icon above my post.
I wish you the best.
Posted by TF (Member # 14183) on :
Your tinnitus is also listed in Burrascano as "ringing in the ears," page 10.
And, many lyme patients describe awful bone pain.
Page 6 of Burrascano talks about thyroid problems and blood pressure problems. These are rather common in lyme patients.
You see, lyme can attack any bodily system. If it attacks your nerves, they won't work right (send false signals, cause twitches, etc.), if it attacks your brain, it won't work right. Same with muscles, gastrointestinal system, hormones, etc.
No bodily system is off limits to this disease.
Posted by Keebler (Member # 12673) on :
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by surprise (Member # 34987) on :
TF eloquent and to the rescue. With correct information.
Hope you both get started on treatment and feeling better soon--
And yes, most of those symptoms sound familiar and close to home, and I have had some critical ones improve with treatment.
Posted by lymeinhell (Member # 4622) on :
I have had all that you list.
I so hope you have hooked up with a Lyme Literate Medical Doctor (LLMD)by now. There are a couple good ones in NJ.
In addition to pointing to Lyme (and other tick borne infections), I too would suggest you have indications of severe magnesium deficiency, and the chronic sinusitis is indicative of perhaps fungal issues. (Both my ENT and Allergist missed checking into the possibility that mine could be fungal in nature, not bacterial. It took my LLMD giving me anti-fungals to clear up my sinuses).
If you have not done so already, post under the 'Seeking a Dr' page for an LLMD in NJ. Or private message me by hitting the little envelope near my id name at the beginning of my post here.
Welcome to Lymenet!!
Posted by Robin123 (Member # 9197) on :
I had half of your listed symptoms. Main thing is, this list fits Lyme disease symptoms and maybe Bartonella. Echoing others' suggestions to find a Lyme doctor.
Various remedies can help. Re sinusitis, for example, I recall when I started drinking mangosteen juice that my sinuses ran for two days straight. The juice is anti-inflammatory. It's in healthfood stores and online. I like the Mango-Xan version as it's the most tart. We're all different in how we respond to remedies.
Posted by paulvan (Member # 44374) on :
Its been a while since I posted. I went to an LLMD in October 2014. She tested me and came back with positive for mycoplasma pneumonia IgG Abs (269 high) and IND on the Western Blot for bands 39, 41 and 83-93. I have been taking Doryx for almost 3 months and lots of supplements. I honestly don't feel much better. I even added two new symptoms; an occasional tremor in fingers on both hands and heat intolerance/with reduced sweating. I see the LLMD again a few days. She said many people take multiple antibiotics to feel better. Your thoughts are welcome
Posted by SacredHeart (Member # 44733) on :
My symptoms leveled out, but just got worse because my antibiotics went up and were changed out. So now I'm herxing. Herxing can cause symptoms to get worse. Seems like I have noticed people start feeling better at around the one and a half to three years...
Everyone seems to be a work in progress. But you are in the right place to get help.
Posted by TF (Member # 14183) on :
paul, you need to STUDY the Burrascano Guidelines. See the link I gave you above.
Being on just doryx and supplements for 3 months is LOUSY lyme treatment. That is why you are getting new symptoms. Your disease is continuing to progress.
The same thing happened to me when I went to a lousy lyme doctor and was on only one antibiotic for lyme disease.
See page 12 of the Guidelines where it tells you that you must be on at least 2 different antibiotics simultaneously to treat lyme disease.
Also, you must be on the dosages Burrascano recommends. See page 18 and following.
I wasted 2 years with lousy lyme doctors. Then, I wised up and found a doctor who followed Burrascano and then I got well. I suggest you do the same.
With this disease, there is no substitute for an educated patient. When it comes to lyme doctors and lyme treatment, you have to evaluate, evaluate and know when to get up and go elsewhere.
Also, what about coinfections? You don't mention being tested for those. I am talking babesiosis, bartonella, ehrlichia, etc. All lyme patients have coinfections and each one requires different treatment. Read it in Burrascano.
After a few months of proper lyme treatment, a good lyme doctor will add in medications to treat one of your coinfections. You can't get rid of lyme unless you also get rid of every single coinfection you have. Read it in Burrascano.
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