posted
This is my first post, I'm hoping others experiences may help me gain some insight.
Present Symptoms; migrate and change in intensity. - pain everywhere, all over ache - sharp stabbing pain in back - feels like my spinal cord is on fire - sharp pain in finger and toe joints - pain in feet when walking - headache in forehead and base of skull/ throbbing - congestion behind ears as if the need to pop, a lot of pressure - pain behind eyes - very tender tmj - weak and shaky muscles - dizziness - rib pain, tender spots and feeling of being squeezed - brain fog - forget fullness - funny feelings in my heart - fatigue - manic episodes where my mind is racing - sudden food allergies - feeling like I'm buzzing - little electric shock feelings on face - AND yes what every doctor seems to think is me being vane; this weird swelling that feels like water balloons under my skin, very very weird. - also despite the swelling, weight loss - and anxiety in the from of anger, very new to me, I never explode.
Here's what I know - Lyme Tieter at 1.85 - WB negative, no bars ( though they only tested 10) - PCR equivocal
- low vitamin D - low IgG - sub clinical low thyroid - high cholesterol - Glucose 103 - anemic - no celiac, no h. Pylori, no lupus - rheumatoid factors all normal
I've requested copies of all my blood work, but I don't have it all presently.
My medical history involves, -chronic sinus infections, -ruptured ovarian cyst, -multiple ligament injuries and dislocated patella ( I was a gymnasts)
Doctors Opinions; - ENT - estachian tube dysfunction - GI - IBS ( of course, another way of saying I don't know) - rheumatologist - Hypermobility Syndrome with Mitra Valve Prolapse - holistic doctor - candida and sub clinical hypothyroidism - PCP - fibromyalgia
I am 29 years old, female, am 5'4", currently weighing 105. (in January I was 116).
I want to know what's wrong with me! I want doctors to stop telling me it's in my head!
I want doctors to stop writing off a symptom or ten just because they don't fit what they think is going on!
What is this weird swelling? Has anyway ever had it before?
Can anyone help guide me?
Posts: 54 | From Central, MA | Registered: May 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tucker-Bell,
Sorry to read of what you are going through.
Weird swelling? Certainly could be lyme.
IBS?
- a gluten-free and dairy-free diet should help, for a start. DGL, slippery elm and marshmallow root supplements, too.
While L-Glutamine is often suggested for "Leaky Gut" it can have terrible effects for those with lyme. Start only with tiny dose - along with other measures.
Dizzy?
Very common with lyme and TBD (tick-borne disease). What can help: GINGER CAPSULES; sublingual B-6 (be sure they are gluten-free).
By some of your comments, I can tell that you've already educated yourself about some of lyme's tricks (you know that only 10 bands on a Western Blot does not equal a proper test, etc.).
While this certainly sounds like lyme. If at all possible, it would be best to be assessed by a real lyme literate MD who is ILADS "educated" -- that is current with the breadth of their research.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Regarding dizziness, in addition to GINGER, MAGNESIUM and B-6, other details that can help are here: ------------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Sorry to hear your feeling this way. You say lyme titer is 1.85, that's a giant red flag...I'm assuming it was an ELISA test, in which case is a positive. ELISA's are worthless, EXCEPT when they are positive. W. Blots are also worthless when done at a regular hospital.
Invest the money, get your test done correctly through IGENEX labs or Advanced labs. Best 200 bucks you ever spent.
You'd be hard pressed to find anyone tell you that there's such a thing as a false positive on those ELISA tests. Find an LLMD ASAP..
Posts: 147 | From youngstown | Registered: Oct 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- outspace is right about IGENEX being the primo lab.
Actually, if you have a positive ELISA, I'm not sure you'd need another lyme test but you might want to test for babesia and bartonella. Anemia is a sign of babesia; that foot pain a sign of Bart.
If either of those come back positive, then it would pretty much point to lyme also.
If money is very tight, you might wait and see what a LLMD would say.
That PCR equivocal also is a clue. Equivocal means something rang the bell.
Did you EVER have a BULLS EYE RASH? If so, that detail in invaluable. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Hi ! Sorry to hear that you are going through all this..
When reading it, I was reminded of some of my first clues. I don think I saw flu feeling or chest congestion...
Do you remember a tick/bite and then not feeling well.
Has this been going on long????????
You have so many thing's that point to this. Was it a LLMD that you saw?
Now for the fun part...You're sick as all get-out but hear "you don't look it"// No matter what -until this disease and co-infection's are ruled out DO NOT TAKE OR GET STEROIDS
It's gas on a flame if you do...
Hope you find help and relief soon.....Nonna
Heck of a way to loose weight isn't it?? I just put on 20ish from who knows what..
others will follow, Blessing's
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be aware that for many, a weight loss of about 30 pounds can be common. However, (especially without treatment) later substantial "undeserved" weigh gain is frequent -- but that can clear with proper treatment.
Just don't go trying to gain weight right now in case it might boomerang later. Focus on good, healthful foods in the right amount and gentle movement as best possible. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I forgot did you get blood work for Brucellosis??
After being sick a few years ,I brought this up. First doctor wouldn't even test for it. To rare.
Pulminary doc did check . Came out positive twice, then Infectious Disease guy's got involved and said no.....
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
posted
Strangely enough I was just told today by my holistic doctor that I am allergic to ginger. Also eggs, wheat, and dust.
Boo, this is in addition to what the allergist told me in January, that I was allergic to milk, casein, peanuts, and tree nuts.
Since January I have been on an elimination diet, no corn, wheat, soy, sugar, alcohol, caffeine, nuts, or milk.
The digestive issues got a bit better.
Three weeks ago the holistic doctor put me on nystatin, per and pro biotics, and boswellia.
1.5 weeks ago the rheumatologist put me on doxy ( btw the acne on my face which was also a wonderful part of ths mix went away in 48 hrs on doxy) . And gabapentin. and vitamin D.
Today the holistic doctor said stop the gabapentin cause I said it did not help. She also added colostrum and armour thyroid.
I have had so much tick exposure in my life, -i grew up riding horses, -owning dogs, -playing in the woods. -Going to sleep away camp on cape cod, where we slept in platform tents, for 7 summers - work as a camp counselor in Maine for 7 summers
From my comprehension of Lyme combined with an as objective analysis as possible of my symptoms, I really think it is Lyme.
Is it possible to have had Lyme for years but not really recognize it, as in having a few symptoms that you shrug off.
And then becoming reinfected more recently with a tick carrying a co- infection and then have everything wreak havoc internally?
Ahhhhh how I just want to feel like myself again!
One last thing, I never recall a bullseye rash but I've pulled plenty of ticks off me.
I did have a rash on my ankle for about two years, that would sort of come and go. It was like a raised ring, very itchy, only a little red though. Not like a standard bullseye rash though.
Symptoms have been going on for years ( though not this intense, before it was just achiness,, popping/ cracking joints, occasional migraines, and easily catching ever little thing my kids ( I teach preschool) had, boughts of anxiety, and stomach sensitivity) but I just thought hey we all have something.
As of the fall, interestingly after bein treated with prednisone and augmentum for a sinus infection that everything went downhill fast.
Posts: 54 | From Central, MA | Registered: May 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- manybites has some good detail there.
Not all lyme rashes are bulls eyes. And rashes may appear from the other TBD (tick-borne diseases), too.
You said you got much worse last fall "after bein treated with prednisone and (augmentin) for a sinus infection that everything went downhill fast." (end quote)
Nonna's note to avoid steroids is very valid.
When you find a good LLMD be sure to let them know about that. Treatment may be a bit different for those with a history of steroids.
Too bad. Steroids can really sink the ship but I so hope you can find a good LLMD very soon.
Connect with your local lyme support groups, too.
Good luck. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Anything here look like what was going on with your ankle? (Remember, though, that a rash rarely occurs but, if it does, it can be telling.)
Lyme Disease; Comprehensive overview covers symptoms, treatment, diagnosis and prevention of this tick-borne illness.
. . . rashes can mimic spider bite, ringworm, or cellulitis. Multiple, so-called �satellite� rashes may appear on different parts of the body. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I can't find a picture of exactly what the rash looked like. I thought it was ring worm, because when I first noticed it, it looked like a worm under my skin in the shape of a ring, but I found out that's not what ring worm looks like.
I noticed it because it was so itchy. The camp nurse thought it was probably fungal and gave me some cream. I was teaching sailing so assumed it was something weird from the lake water.
It lasted for almost 2 years and kinda morphed into more of a red patch, that faded into more of a red mark. And eventually disappeared altogether.
I'm not sure that's a piece of the puzzle or not. I sort of forgot about it, until something made me scratch that ankle and then I remembered having the rash there for a long time. And wondered if maybe it had anything to do with what I'm experiencing now.
Posts: 54 | From Central, MA | Registered: May 2012
| IP: Logged |
posted
yes, absolutely its possible that you've had it for a long time or your whole life. prob half the people here suspect they've had it their whole life or since they were kids. the immune system was just able to stave it off.
Posts: 147 | From youngstown | Registered: Oct 2011
| IP: Logged |
posted
Why is it so hard to convince a doctor that I'm sick! It shouldn't be this hard to get help.
The holistic doctor tested for co- infections, she said they were all negative. I am not convinced. As far as I understand those tests are not very reliable either. For bartonella I believe they only tests for 2 strains. But there are 20+ known strains.
I just don't know how you could look at all these multisystem symptoms gaining strength at the same time, , and low IgG, and anemic, and vitamin d deficient, and not think something was throwing off the homeostasis.
My PCP keeps trying to put me on 24/7 prednisone for my sudden allergies, and I have refused! He is frustrated with me for complaining of symptoms but not wanting to try new things. But I know the damage the pose to my potentially already compromised immune system. I also stopped taking Zyrtec -D for allergy symptoms because if my immune system is compromised then antihistamines aren't good either. Basically freezing your entire immune system and give Lyme a chance to beat me up from the inside out.
I'm super cautious with my diet. And I'm taking what the holistic doc has recommended plus doxy from the rheumatologist. I'm going to try to get in with a Lyme doc sort of nearby . I know it can take a while to get in, so I am going to try to make my appointment now, in case the first chance is 2-3 months away. I'm due to be out of the country for the summer, so at least that will take my mind off it while I wait to see the Lyme doc. And I can continue to build up my immune system during that time to hel fight whatever infection I may have.
I'm just thankful that some days are still good days when I feel pretty normal, and can still remember what it feels like to be my old self again. And I know it will all be ok eventually, it will just take time.
Posts: 54 | From Central, MA | Registered: May 2012
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[tsk]](graemlins/tsk.gif)
Printer-friendly view of this topic