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» LymeNet Flash » Questions and Discussion » General Support » Really scared! What do you think?

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Author Topic: Really scared! What do you think?
Jenny R.
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Member # 9019

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Hello I've posted here before, about 2 weeks ago.


I went to my PCP and he is sending me for a MRI of brain on Wednesday, April 26th.

My symptoms started with muscle spasms in my left shoulder every once and a while, then one night while laying in bed, I had this terrible pain in my waist, where I had a hard time breathing.

This lasted for about 30 minutes, never had this again. Next came the facial tingling, which was only on occasions, now constant.

Then one night while watching tv, started seeing black spots, this happened twice. (I do get migraines, these started right at the beginning, about 8 years now.

Anxiety attacks that left me with 3 months of nausea, did some searching for causes of nausea, came back, MS as a cause. About 1 months after this, I started getting strange sensations lilke bugs crawling, only when clothes are on.

This thing with the pressure in chest, is this common with Lyme? I was looking up MS Hug, and someone replied and said that they had this with Lyme. I was shocked. Because all along I've been worried about MS, but some of my symptoms never go away, they stay.


This is what I have as far a symptoms, off and on, for the last 8 years:


Facial tingling
headaches
crawling sensations
Tingling on tip of nose (new, just started 1 week ago)
burning like feeling on upper, inner legs
floaters (left eye)
pain in ear
swollen neck lymph nodes
heart palpitations
poor memory, concentration
all this started after a bout of fatique and body weakness that lasted 3 days.


Can going to the chiropractor, being adhusted have anything to do with Lyme, cause when I went to the chiropractor about 4 years ago, he adjusted me and the next day I started having this terrible burning in my legs and back.


I'm really scared, I believe there is something wrong with me, and I believe it has to do with Lyme, can anyone help me out please! Thank you.

Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Hi Jenny! Would you consider copying this in a new post over in Medical?? That is where most of the people are and this is definitely a medical question!!

here is a list of lyme symptoms:

Lyme Disease Symptoms List
1. Unexplained fevers, sweats, chills, or flushing
2. Unexplained weight change--loss or gain
3. Fatigue, tiredness, poor stamina
4. Unexplained hair loss
5. Swollen glands: list areas____
6. Sore throat
7. Testicular pain/pelvic pain
8. Unexplained menstrual irregularity
9. Unexplained milk production: breast pain
10.Irritable bladder or bladder dysfunction
11.Sexual dysfunction or loss of libido
12.Upset stomach
13.Change in bowel function-constipation, diarrhea
14.Chest pain or rib soreness
15.Shortness of breath, cough
16.Heart palpitations, pulse skips, heart block
17.Any history of a heart murmur or valve prolapse?
18.Joint pain or swelling: list joints_____________
19.Stiffness of the joints, neck, or back
20.Muscle pain or cramps
21.Twitching of the face or other muscles
22.Headache
23.Neck creeks and cracks, neck stiffness, neck pain
24.Tingling, numbness, burning or stabbing sensations, shooting pains
25.Facial paralysis (Bell's Palsy)
26.Eyes/Vision: double, blurry, increased floaters, light sensitivity
27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
28.lncreased motion sickness, vertigo, poor balance
29.Lightheadedness, wooziness
30.Tremor
31.Confusion, difficulty in thinking
32.Diffculty with concentration, reading
33.Forgetfuiness, poor short term memory
34.Disorientation: getting lost, going to wrong places
35.Difficulty with speech or writing
36.Mood swings, irritability, depression
37.Disturbed sleep-too much, too little, early awakening
38.Exaggerated symptoms or worse hangover from alcohol

Now there are also co-infections with Lyme. Many people get more than one disease when they are infected by ticks or fleas, etc.

Each infection has different symptoms and different treatments!

This is a list of Babesia symptoms. [nausea is a big one]

The following signs/symptoms may be present in those infected with Babesiosis:
Fatigue*
Arthralgias*
Myalgia*
Drenching sweats*
Headaches*
Emotional lability*
Depression*
Dark urine*
Splenomegaly*
Dizziness*
Nausea and vomiting*
Cough*
Dyspnea*
Fever*
Chills*
Hepatosplenomegaly*
Jaundice*
Malaise*
Shortness of breath*
Bleeding tendencies,
bruising*
Thrombocytopenia*
Hemoglobinuria*
Hyperesthesia*
Pulmonary edema*
Encephalopathy*
Low to normal range leukocyte counts*
Possible elevated levels of dehydrogenase, bilirubin,
transaminase*
Anorexia*
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.
An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.

I don't have a list of symptoms for bartonella, but one of the main symptoms is swollen lymph nodes.

 -

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
gambler
LymeNet Contributor
Member # 8441

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Jenny,

While I think you could have Lyme, I think everyone has Lyme. Probably more helpful to you are my similar symptoms:

I felt for months like I was slightly suffocating esp. when laying down, a pressure on my upper chest.

I have floaters, most look like clear worms, I am trying to count them for you, maybe about five in each eye, but they are always moving.

I am not sure if I see black spots or white spots, I just call them stars.

I have sensory neuropathy, and not only do think I have bugs, sometimes I think I have wet my pants because my leg feels wet. But nothing.

I have heart palpitations constantly.

My facial numbness is mild but there.

I had a 2 year headache, just constant pressure, that I had figured I would have to live with. I am pleased to say I don't have it today.

Finally, my memory and concentration are crap.

I hope this helps you in some way. I know I was stunned when I read that other people had a bunch of seemingly random problems like I did. Good Luck.

Posts: 243 | From chicago | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
BostonLyme2005
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Hi Jenny,

I have floaters, tingling in many places, crawly feelings, spasms, fatigue, burning in diff. places, joint pain, arthritis pain, etc.

Have you had a western blot from Igenex done?

Have you been tested for co-infects?

Sounds like some symptoms of Lyme, not sure, but very well could be.

Are you taking meds now, and if so, which ones?

I hope you feel better,

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BostonLyme2005
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Also,

Hang in there!

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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804

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THey are possible symptoms of lyme.

Maybe you said and I missed it. Do you have a lyme literate dr yet?

If you have lyme they are going to be the best ones to treat you .... but they are regular drs so if its something else they can figure that out too.

(I have had lyme since sept 1987)

I have had floaters forever. Numbness off and on. mine more in the feet toe leg area though.

Used to get heart paplatations... man was that scary... and very unexpected. I am 29 and I was a few years younger when those palpatations happened.

I used to have problems breathing.

I do have Pain in joints, bones, and musles.

So you are not alone.

There is hope. Find a lyme literate dr. (llmd)

Best wishes [Smile]

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

Posts: 3860 | From nj,usa | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
lymex5&counting
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Member # 7202

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Hi Jenny,

Sounds like lyme, bart and babs to me. I would

check out www.Morgellons.org about the crawling

sensations you experience. You certainly live in

a hot spot for lyme. The people I know that were

dx'd MS actually have LYME! I think you should

get to a llmd asap. Go to the finding a Dr

section. Also there are support groups in PA

contact them and they will be able to give you

lists of llmd's. Be sure and use only Dr's that

you get several good references for by actual

patients. You don't

need to waste any of your precious time, energy

or $ on a duck. Most of the good llmd's have a

long waiting list. So if your PCP is willing to

entertain the idea that you may have lyme. To

save time try to get a western blot test done

thru IGeneX. And maybe some coinfection testing

done thru MDL if you have insurance. This can

save some time. And by all means if you can get

started on some antibiotics that would be great.

In the meantime get on a good

probiotic. Keep copies of all labs. And post your

results here if you need help. And don't forget

to read the newbie links.

We are here for you, lyme x 9

Posts: 399 | From Texas | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Andie333
Frequent Contributor (1K+ posts)
Member # 7370

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Hey, Jenny!

Thanks for your post.

I have to say I've had most of your symptoms, especially facial tingling, creepy crawly stuff (always in the same spot for me), floaters, natsy headaches, burning (in several different areas).

I've also been completely exhausted and had crippling headaches.

For me, a brain MRI showed absolutely nothing.

But Lyme tests...well, they were strong positive, through Igenex labs.

I also hope you have a Lyme literate doctor (LLMD). If you don't, there are several excellent ones on your end of the state, I think.

The other thing I've been diagnosed with is Bartonella, another tick-borne disease. The Bart symptoms are primarily neurological.

Since starting treatment in June, Jenny, I've gotten quite a bit better -- slow but steady improvement. I was infected for at least nine years without being diagnosed, so that has made getting well a MUCH longer process for me.

When it comes to getting help, time is definitely of the essence. Obviously, I can only tell you my experiences and really can't know if you've got Lyme. I can just encourage you to please see a LLMD as soon as you can.

One more thing, Jenny: it was my PCP who sent me from specialist to specialist chasing all these bizarre symptoms for years. She never even mentioned Lyme.

I think it's great that you've found this forum.

Andie

Posts: 2549 | From never never land | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

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It sounds a lot more like Lyme than MS to me.

It wouldn't hurt to do the brain MRI, but you need to know that frequently MRI's from both MS and Lyme patients show white matter lesions -- the MRI's can look the same in both diseases.

When you get the MRI report back tell us what is says and we can help you interpret it, if it is not normal. You didn't say how long you have been sick -- the longer you go undiagnosed (I'm talking years) the more likely your MRI would not be normal.

Just take it one step at a time. Get the MRI, try to get tested for Lyme at the "right labs", start looking for an LLMD and start reading the Newbie Links -- begin with Dr B's Treatment Guidelines.

Good luck and Welcome to LymeNet.

Bea Seibert

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5dana8
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Member # 7935

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Hi Jenny

I have to agree it sounds more like lyme than MS

If I where you I would find a Lyme Literater doctor-people on this baord are really great about helping find one in your area.

Get tested by ingenex 1-800-832-3200

A real LLMD will know how to read the bands correctly.

Most of your symptoms I have had over the years. And with intensive treatment this last 3 years by a LLMD

Most have cleared up. (If I had had MS none would have cleared)

Read alot of the newbie links. There is a wealth of information there.

I hope you stay in touch here and keep asking questions.

I hope you can find help soon [group hug]
dana

--------------------
5dana8

Posts: 4432 | From some where over the rainbow | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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jenny?

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
trails
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Member # 1620

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I echo everyone above. Sounds more like lyme than MS, an MRI can be helpful but does NOT differentiate between the two.

The things you are experiencing are VERY common with Lyme. I have lots of them.

You are in a very endemic area for Lyme. I am constantly surprised at those who DONT have lyme and live there. It seems they are walking miracles.

It has recently been stated (i think at the hope to heal conference?) that only 7% of people infected with lyme ever got a rash!

Most "regular" docs are owned by insurance companies and are very hostile towards the treatment protocols lyme disease requires. It costs the companies too much money, they refuse to acknowledge it exists.

Try to stay calm, as stress really makes this thing worse. I know that is very hard to do!

But---now you have found a great and knowledgable group of people who can support you and help you through. SOunds like you will be seeing a LLMD in 8 weeks time, which isnt close enough, but is coming, and there isnt much else you can do I would think. I know it is really hard to not be scared about lyme, but if you have it you already have it, nothing to fear now, the worst is possibly behind you. NOT knowing is the worst. You are on the right road to finding your answers!

I hope you are able to have a decent day today,
Trails

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bettyg
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duplicate

[ 24. April 2006, 02:35 AM: Message edited by: bettyg ]

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bettyg
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Jenny, I hope I sent my list of newbie links to you the other day. My pc is acting up; I can't get into my word processor now.

What about a SPECT SCAN instead over a brain mri? I read a lot about that lately that there is positive proof with vs. mri brain scan.

I had a brain mri on 3-22-06; showed I had a "mini stroke". I also had this while they put me to sleep since I'm extremely claustrophobic!

They also burnt me a CD brain MRI to show my lyme md.

Good luck to you.

[ 24. April 2006, 02:34 AM: Message edited by: bettyg ]

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