posted
Hi All, New to the forum and I have found more information than I could ever Immagine.. Here is my story, long but with all the facts. I honestly am believing I am a nut case since the Dr's can't give me an answer. Very frustrating.
A little history as it is 5 years later . A little long but Thank you so much for reading.
Prior to November of 2001, healthy energetic female, athletic, running upwards of 5 miles per day, daily aerobic workouts and weightlifting. BP always normal, (110/70 - 120/80) even throughout entire pregnancy. Chronic pelvic pain of 8 years prompted surgery for endometriosis in March 2000. November 2001, gave birth to a healthy girl, no known complications although very difficult labor. Very run down after delivery with chronic congestion, fatigue and pain. After 8 months of continued congestion, fatigue and pain went to doctor. Had positive ANA but negative for arthritis and Lyme. Was sent to PT to help with muscularsketal issues. In November 2002 developed illness consisting of severe fatigue (difficulty getting out of bed from fatigue), swollen glands and soar throat. In December 2002, went to doctor due to bright green nasal discharge sore throat, nausea, swollen glands, and tremors on right side. Had syncope in doctor office. Sent to hospital with cardiac testing showing no abnormalities. Blood testing showed low red count, low hematocirt, low potassium, low magnesium, and low calcium. White count was normal. Illness was not producing any vomiting and I was eating and drinking sufficiently. No known reason for lab results. Discharged still not feeling well. One week later after holding and playing with daughter developed severe headache. Went to lay down and developed slurred speech, inability to move right side, bluish color in fingernails and vertigo. My blood pressure was also elevated. Didn't want to go to hospital since just there a week ago. Finally agreed to go to hospital 3 hours after event. When CT scan was done, didn't show stroke. Other tests included echo, brain MRI and upper GI. All negative. There were some areas of high-signal in brain MRI, but they felt they were non-specific. ECG showed some low beta activity but didn't feel it was relevant. Blood tests showed positive anti-phospholipid antibody at high 89.9, positive ANA and some lymph counts, but no elevation in white count.
I was discharged 3 days later unable to walk. Weakness was so severe, I couldn't cut my food or use a pair of scissors. I also would get tremors where something I was holding would just fly out of my hand. Went through 6 months PT to gain strength on Right side and improve balance. During the process I continued to have migraines, nausea, clumsiness and knees would often buckle when trying to walk. At times it was difficult to breath and I felt like I was choking and would get severe shortness of breath, but no weezing. I had pulmonary function tests at 50% of capacity, although I nevered weez. Pulmonary did not give definitive diagnosis since I don't weez.
Although I can now walk, I have permanent right side weakness and continues to get ``flare ups'' of migraines, clumsiness, vertigo, tripping on feet, blurred vision, high blood pressure, shortness of breath, heat intolerance, irritability, nausea, and occasional night sweats and insomnia. Also have episodes of blurred vision, and lightheadedness, especially upon standing and gets motion sick. I also has a chronic measle like rash on chest and abdomen that sometimes looks bumpy, other times flat, and other times is not visible at all, in addition to some non-painful lumps under skin developed sometime after illness in 2002, possibly related.
Today, October 2008 and 5 years later, I continue to experience symptoms exhibiting neurological conditions; right side weakness, migraine headaches, blurred vision, clumsiness, neuropathy, bone and muscle pain, air hunger, vertigo (imbalance), nausea, intermittent high blood pressures, as high as 170/110, especially in morning hours between 7AM and 12PM. The only new symptoms since 2002 is corneal edema and blepharitis. I am also being treated for interstitial cystitis. Hormones seem to play a role in episodes of high BP. Has tried to see many doctors to get answers and they all keep telling me to see a neurologist.
Posts: 2 | From kingston | Registered: Oct 2007
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Of course, none of us on here are doctors, and we certainly don't hand out diagnoses, but I would say that it really really couldn't hurt you at this point to talk to a Lyme Literate MD (=LLMD) about your symptoms, and see what they say.
If you post in "Seeking a Doctor" someone will help you find a good LLMD, hopefully not too far away from where you live.
Some of the really good, famous LLMDs have had thousands of Lyme patients. If your symptoms are indicative of a Borrelial infection, they may have had patients like you. Or they may have good advice about what it could be.
It certainly is something though, and I would keep trying to find answers. You've been through quite a lot, and I hope you find some answers.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME!!! !*)!*)!*)!*)!*)!*)!!!
Listen, one thing you should know about TBDs is that many of them are blood negative and it's not just Lyme. There are 4 main diseases- Tick borne diseases- Lyme, Ehrlichiosis also known as Anaplasmosis, Babesiosis and Bartonella. And there are others too, viruses, other TBDs...
Your symptoms are all TBD compatible but they are nonspecific symptoms. You need to see an LLMD just like BB told you. Like he said, if you go to Seeking Doctors they should be able to direct you. Many of your symptoms sound compatible not only with Lyme but other TBDS as well like Ehrlichiosis or Babesiosis which can both cause lung symptoms.
You very well could have lYme and TBDs- or NOT. You need to be evaluated by a doctor well-versed in TBDs. I had Lyme, Babesiosis, HME Ehrlichiosis and presumptive Bartonella and had many of the symptoms you have, but mine are gone now. The good news is if it is TBD related that you can get better, lots better, and maybe 100%!
You definitely sound very Lyme-y but if you have something else a Lyme doctor would be more likely to catch it than a regular doctor because they usually are experts in Differential Diagnoses of similar diseases.
WELCOME*)!)*!! !)*!*!*!)!*)!!! I hope you get some answers-!!! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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tailz
Unregistered
posted
My deterioration coincides perfectly with the advent of cell phone technology, and each spiral downward parallels some new technology.
I'd recommend you buy a gaussmeter. My BP was always low (100/60) when I was healthy. Expose me to an electromagnetic field of any nature though, and my BP goes up and I sweat. I guarantee your BP problems are EMF-related. I'll bet they are worse on rainy, hazy/humid, or foggy days, too.
I've proven this scientifically to myself and others with a gaussmeter - finally! I didn't have high BP, as in I'm-in-cardiac-arrest-right-now high, but it was high for me.
You may want to try cinnamon. It is supposed to regulate blood sugar, lower BP, and it also has antimicrobial properties. It does help. I'm using this myself. Here's info on cinnamon and its benefits...
Bugs have a magnetic sense though, and we just polarized them with wireless technology to remain inside of us indefinitely. They cause diabetes - they cause hypertension.
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posted
Well I couldn't have written the same story. I have been in treatment for over 5 years. Same problems...but I have gotten better. I had a resting heart rate of 160 when I was used to 65. BP 180/110.
At the time they diagnosed me autonomic dysfunction but they weren't sure what it was caused by. As I kept treating the lyme, the shortness of breath decreased and the tachycardia slowly disappeard (although I needed beta blockers to get that in check).
It seems worth it to get checked out by an LLMD.
At my worst, I didn't know what day it was --other days I was so weak I couldn't feed myself - the fork or spoon was too heavy. and the tremors were horrible.
You probably should see a neurologist as well...my neuro has helped with the symptoms while treating lyme (helps control the seizure like brain activity),they will usually do an MRI, EMG, EEG and NCVs.
I wish you well. Try to hang in there.. I know how depressing this can get.
Posts: 298 | From Maine | Registered: Jan 2004
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. A little long but Thank you so much for reading. 
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