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jackie81
Regular Member


Date Joined Jan 2010
Total Posts : 41
   Posted 8/27/2010 6:53 PM (GMT -6)   
Started just after christmas.. my whole entire body felt numb/thick ..if I scratched a part of my body it felt like I had to scratch really hard just to be able to feel it. It also felt like my coordination was off. This lasted about an hour.

Next day I woke up feeling like I had the flu (exhuastion, nausea, shakiness etc) -- Had heart palpitations and a feeling of extreme tightness in my stomache.

-- I then started feeling random muscle twitches in my body and once in a while I would feel an internal tremor like feeling.

Had this "flu" for about 2 weeks.. went back to work

-- Things started to look weird my vision was blurry, parts of my vision seemed like it was blocked out so if I looked at someone part of their face would seem like it was blocked out or something...it was weird. Also very dizzy
-- I then noticed that things sounded louder than usual.

-- about 3 weeks later I developed tinnitus in both ears constantly which I still have to this day. I have to sleep with a fan on to reduce the noise

-- Huge amount of pressure in my head and ears that comes and goes.

--Headaches at times it felt like I coudnt hold my head up because my neck was too weak.

--Sensitivity to light that comes and goes

--VERTIGO--HUGE symptom I always feel dizzy with some vertigo.

--every once in a while I will have an area on my body that kind of tingles for a few seconds then stops (on the top of my foot, or on my face by my lip and other various places).

--Other sympoms are

Motion sensitivity that comes and goes
Nausea
Weight loss (lost 45 lbs since christmas)
Anxiety/depression
Stress increases symptoms
Huge increase in eye floaters
if I look at a reflection from a car or something it takes a long time for my eyes to go back to normal
--Irritable bowels seem to have alot of diarrhea or constipation
--Extreme pain behind eyes (hurts to move them) this comes and goes also
--A few times when blinking it seems like there are flashing lights in my periphereal vision
--sore throat that comes and goes and the feeling of getting a cold but it only lasts a day
--Extreme neck pain/stiffness that comes and goes

Anyway...does this sound like Lyme? I had a positive Elisa then a positive IgM WB (I also found out that it was bands 23 and 41 that were reactive) on the testing here in Canada but a negative IgG so my doctor is not convinced although he put me on 3 weeks of Doxy and is referring me to a llmd but that will probably take about 2 months to see him . He also wanted me to do another blood test to see if the first was a fluke. The second test came back Lyme IgG/Igm Elisa was Indeterminate Lyme IgM Western Blot was reactive

Anyway does anyone else relate to this? Is this lyme?

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 8/27/2010 6:57 PM (GMT -6)   
Your test results and symptoms are very suggestive of Lyme. I strongly recommend you go see the LLMD for proper diagnosis and treatment.
-Razzle
Chronic Lyme & Bartonella, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, Progessence+ (wild yam + essential oils), Moducare, homeopathy.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35849
   Posted 8/29/2010 4:19 PM (GMT -6)   
I agree with Razzle, Jackie.
You really should get in to see a LLMD (Lyme Literate MD) to get the help you now need. Tossing a few abx your way is NOT how any doc should treat this insidious disease, but until they understand that is a new & emerging epidemic, we need to stick together & help each other get the kind of treatment that is necessary for us to heal.

The blood tests were never meant for diagnostic purposes - even the CDC page states that, but the docs still use them that way anyway. I didn't test positive until I had been on strong abx for a full year. The fact that you tested positive & then tested negative, could easily be because your infection has gone into the 'chronic' stage.

I would suggest you get your hands on some more abx while you are waiting the two months to get in to see that LLMD.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 8/29/2010 5:38 PM (GMT -6)   
Yep, I would try to get a refill on that abx script before you see an LLMD and get in to see one as soon as possible.

I have had many of the same symptoms you describe.

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/29/2010 7:47 PM (GMT -6)   
Jackie:
My IGG and IGM were never both positive. THey keep switching around: sometimes my igg is +, sometimes my igm is +.

Joey F
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/31/2010 11:47 AM (GMT -6)   
I decided to join this forum after reading this thread because I have so many of the same symptoms as Jackie. I'm a 33 year old male. In the last 10 years I don't think I have taken more that 2 sick days off in a row prior to last November (Probably a month or two after I had to dig a tick out of my side) I came down with the worst flu I've had sice I was a kid. I went to the doctor because I thought it might have been the swine flu but he thought it was viral and told me to rest. A couple weeks after that I started having strange vision problems, like there was a blind spot in the middle of my vision. That only lasted like 20 minutes and occured two different instances but a couple weeks after that developed horrible floaters. My eye doctor said everything looked good and thought it might have been eye migrains.
I also have fatigue,
lost at least 15 lbs,
dizzyness sometimes,
sometimes slightly confused and unable to focus
increased anxiety,
sensitivity to light,
swollen throat,
neck pain and stiffness,
headaches,

I've been to a couple different doctors, was first diagnosed with mono but after a couple months of still not feeling better I went to another doctor and he said it was definitely not mono just epstien bar wich is common. I had multiple rounds of blood work including hepatitus, HIV, thyroid, lupus and a test for Lyme that I requested (I think Western blot) and everything came back negative. I left off with him telling me it's anxiety but I don't think so.
Lately I keep thinking about that tick I had in my side and I've been thinking about an going to see an infectious disease MD to look alittle more into Lyme.
I just happened to see this and wanted to see if I was heading in the right direction. I just feel horrible everyday, need to figure out why already
Thanks

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 8/31/2010 12:45 PM (GMT -6)   
Joey F., welcome to the forum. Your story is not unlike many others of people who have lived with undiagnosed Lyme and coinfections. I have many of your symptoms. The eye thing, the weight loss, light sensitivity, swollen throat, neck pain and stiffness, headaches. If you have not already done it, you might want to check out the sticky for "new to this site" at the top of the thread list. It has a lot of information about Lyme testing and other things. First, just because you have a negative WB does not mean you don't have Lyme. Many times, especially early in the diagnosis process, tests can be falsely negative because of impaired immune response. Doctors may make a clinical diagnosis based on your symptoms. Also, if your test was processed by a lab using less sensitive procedures, your test may not be reliable. Was your test processed at IgenX? That is a good lab for Lyme testing. Also, if the physician interpreting the test results is not Lyme Literate, they may tell you the results are false when really the results suggest further testing.

You will also want to be tested for coinfections; infections that are often found along with Lyme.

I hope you find the answer soon. It's so difficult to live with these symptoms, especially when you are not sure what is causing them.

Rose
I have Lyme; it doesn't have me.

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 8/31/2010 12:54 PM (GMT -6)   
"I developed tinnitus in both ears constantly which I still have to this day. I have to sleep with a fan on to reduce the noise
-- Huge amount of pressure in my head and ears that comes and goes.
--Headaches at times it felt like I coudnt hold my head up because my neck was too weak.
--Sensitivity to light that comes and goes every once in a while I will have an area on my body that kind of tingles for a few seconds then stops (on the top of my foot, or on my face by my lip and other various places).
Weight loss (lost 45 lbs since christmas)
Anxiety/depression
Stress increases symptoms
Huge increase in eye floaters
if I look at a reflection from a car or something it takes a long time for my eyes to go back to normal
--Extreme pain behind eyes (hurts to move them) this comes and goes also
--A few times when blinking it seems like there are flashing lights in my periphereal vision
--sore throat that comes and goes and the feeling of getting a cold but it only lasts a day
--Extreme neck pain/stiffness that comes and goes"

Hi Jackie. The above are all symptoms you have that I also have. I have Lyme and two coinfections: babesia and bartonella. Is there any way you can get a prescription for meds to treat you while you wait for an appointment? To help with some of your symptoms, you might want to try the Lyme diet and doing detox baths. (See sticky for "new to this site") Both have helped me a lot. My husband has vertigo and has found ginger to be helpful. There is a ginger candy he likes, but you can also just eat ginger.

I hope you can get started on meds soon and that you get some relief from these symptoms.

Rose
I have Lyme; it doesn't have me.

jackie81
Regular Member


Date Joined Jan 2010
Total Posts : 41
   Posted 9/1/2010 12:46 PM (GMT -6)   
Willowrose said...
"I developed tinnitus in both ears constantly which I still have to this day. I have to sleep with a fan on to reduce the noise
-- Huge amount of pressure in my head and ears that comes and goes.
--Headaches at times it felt like I coudnt hold my head up because my neck was too weak.
--Sensitivity to light that comes and goes every once in a while I will have an area on my body that kind of tingles for a few seconds then stops (on the top of my foot, or on my face by my lip and other various places).
Weight loss (lost 45 lbs since christmas)
Anxiety/depression
Stress increases symptoms
Huge increase in eye floaters
if I look at a reflection from a car or something it takes a long time for my eyes to go back to normal
--Extreme pain behind eyes (hurts to move them) this comes and goes also
--A few times when blinking it seems like there are flashing lights in my periphereal vision
--sore throat that comes and goes and the feeling of getting a cold but it only lasts a day
--Extreme neck pain/stiffness that comes and goes"

Hi Jackie. The above are all symptoms you have that I also have. I have Lyme and two coinfections: babesia and bartonella. Is there any way you can get a prescription for meds to treat you while you wait for an appointment? To help with some of your symptoms, you might want to try the Lyme diet and doing detox baths. (See sticky for "new to this site") Both have helped me a lot. My husband has vertigo and has found ginger to be helpful. There is a ginger candy he likes, but you can also just eat ginger.

I hope you can get started on meds soon and that you get some relief from these symptoms.

Rose
Thanks for your reply Rose. I am seeing a LLMD on the 20th..so 20 more days..unti then I just have to wait because my regualar GP will not give me any medication. Thanks again
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