posted
Could you please tell me if I there's any possibility I've lyme?
1 year ago - found I've high BP. Started Triamterene/HCTZ. After about 2 weeks taking this medicine, had a stroke like sensation on my face (left side), like a wave. It was gone after couple of minutes.
It happened again about 5 times, CT scan showed that it was not stroke.
Went to first neuro, did MRI, findings not conclusives and not likely to be due demielination. After about 1-1 1/2 month paresthesia left side of my face (weird sensation - not numbeness, itching, bit of pain-not a lot).
This sensation can get worse and improve in minutes, hour(s) or day, but it's always there.
Had a couple of tests for MS and so far they were negatives. Started feeling my hands tingling, numbish, they get better when I move them (basic it happens at night).
Changed BP medicine to Quinapril. All the symptoms kept in the same way, started the same feeling in my scalp, left side.
Started to feel my left foot tingling, it goes away when I move. Tingling on my arms and legs (like if I had a couple of ants running really fast on my skin, it last a couple of minutes.
My dr said my heart is beating too fast, started beta-blocker. Stifness in my neck, pressure in area between my neck and my skull, headaches that don't go away and make me feel out of my body.
Punctual pain all over my head (not headache), last a couple of seconds and "travels" on my head. I do not recall a tick bite, rash, however like to hike and work at a vet school.
Had an episode for a month or so that I know some insect was biting me all over my body and never found what it was (around my waist line, around my ankles-socks, etc).
Had some isolated sweating episodes at night, and for 3 times my period was "weird" (missed it, came too early, too long- I'm in birth control pill). I'm a female, caucasian, 31years, from south america (living here for 3 years).
I live in NC and go to the mountains (NC and Tennessee) quite often. Almost forgot, pain on the arch of my right foot.
posted
you've got to be kidding me! this is me 2 summers ago!!!! EXACTLY! not close, not pretty close, EXACTLY! oh well, there is a difference, I got bit in Durham, NC not in Raleigh, NC (25 miles apart) and I remember the tickbite.
Now I cannot tell you for sure you have lyme. i i would sure as hell RUSH to the doc who could tell me.
Posts: 109 | Registered: Aug 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hi, Rc and welcome to Lymenet! I'm really glad you found us.
I'm not a doctor, but I had about 3/4s of the symptoms you mentioned. I chased each individual symptom from specialist to specialist, and nobody thought to test me for Lyme.
My disease had 9 years to develop and spread through my system before I was finally diagnosed.
I've been treated for a year now for both Lyme and Bartonella, another tick-borne illness. I'd encourage you to find a Lyme-literate doctor in your area and get a good, comprehensive test as quickly as possible.
You can post a request for doctor's recommendations in the Seeking a Doctor forum. Also go to the association links in the left-hand menu and search for a group in your area. They will know recommended doctors, too.
In the meantime, it might be helpful for you to keep track of your symptoms each day. There's are good charts y ou can print out here:
posted
Thanks for your posting, Did you go to a Lyme specialist? You know, I'm getting frustated with my doctors, they don't put things together... And I'm pretty sure they think I'm a bit crazy, because I keep asking... and I think they fell chalanged... I think I'll have to ask them to test me for Lyme, but I learned that it's hard to get a final diagnostics...
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
rcs,
The only doctor I had who tried to put things together for me was my Lyme doctor (and I went out of state to see her).
Most specialists (I saw more than a dozen of them) treated only what was within their expertise, and all of them were wrong. I did have a gp, but all she did was send me to specialists. She never thought to test me for Lyme despite the fact that I live in a Lyme-endemic state.
Lyme is a complicated, multi-systemic disease, and Lyme literate doctors (called LLMDs on this board) are able to recognize the disease from test results and clinically.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Did all of this start AFTER you went on medication for hypertension? If so, I'd have to wonder about an atypical side-effect profile. My BP was borderline and I didn't want to go on madication. Getting off of caffeine brought it down into a range my doctor thinks is acceptable.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
This could be a medication related issue...but you switched and the symptoms persisted.
Those little creatures you thought were biting you could have well been fleas.
They can carry and transmit diseases also....
playing where you do and working where you do increases your risk factors for tbd's...
I would advise you get to a llmd...or at least get a western blot test performed...tell your doc ya know...where you work... Perhaps your employer would foot the bill for the test...cuz you may have been infected at work which would make it a workmans comp thingy...
Unless you're like my daughter and do it on a voluntary basis.....
Get tested in any case.......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Thanks for all the postings... I first thought that this could be related to the medice, but I changed it several times, so I don't thisk it's the case, however, off course, none of my doctors really investigated it. I have an appointment scheduled to see a doctor in an University, and I really hope they can think outside the box. I say this because my cardio says, ohh, the medice doen'st cause it, you should keep going to your neuro, and my neuro says I don't have MS and I should see him only if I have any further symptom related to MS. The point is that everything is sensor, I don't feel weak, I do feel dizzy, but the medicine can be blamed for this, but I'm still exercising and everything. And I think one of the hardest things is that if you look at me (despite some days I'm in a terribIle mood) you CAN'T tell I feel SO sick... I definitly will be tested for Lyme. One more time, thanks for all the replies!!
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I hate to disappoint you, but the university docs in NC are not known to be Lyme friendly, and definitely not Lyme literate.
My suggestion would be to post in the Seeking a Doctor Forum to find a LLMD who is not too far to travel for you. The good one in NC has recently had problems with the uninformed NC Medical Review Board.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Everybody in this site is just great! Thanks you all. I have one more question. I haven't been tested yet, I'm waiting for my appoitment. Before you started the treatment, did your symtoms have ups and downs? I have my neuro symtoms all the time, but it can get worse or better. One thing I noticed is that close to my period it gets worse, and after I got a cold few days ago, I felt miserable, and now I'm fine. Does it sound familiar?? Thanks a lot
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Hope you are not going to Duke. They are known to be anti-Lyme. Won't even test. No Lyme in NC, they say.
We here in NC are in a bad situation right now as our only LLMD has just been sanctioned by the NC Medical Board for his "out of the box" treatment of Lyme. He has helped many, many people, but the medical board just ignored that. Now they are leaving us all to suffer and die.
On top of that, any doctor who is receptive to the "other" standard of care is scared to practice it now. They now know that she medical board does not approve more than 2 months of antibiotics for Lyme, and they do not want to end up in the presence of the board themselves. So now, we are moving backwards.
Good luck to you.
Posts: 2275 | From NC | Registered: Oct 2000
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If the doc does not believe in longterm treatment for Lyme they will not prescribe regardless of where you were infected.
Hubby ran into this problem in our travels. We had to keep reminding the doc that we were not from Kansas but from Virginia -- start feeling like Dorothy in the Wizard of Oz. Same reaction when we were in Indiana.
The ones that don't believe even ignored hubby's positive Lyme PCR test and repeated ELISA and Western Blot tests which were always negative. He had had no antibiotics at that point!!! We kept getting referred to psychiatrists for anxiety/depression.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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No, we don't have Lyme in South America... And I'm not sure if it is Lyme. You know, if it is Lyme I know it won't be easy, but I would be really happy to know what is causing all my symptoms...
No, I'm not going to Duke... I'm going to UNC, but I'm scheduling an appoitment with a doctor that is not LLMD, but he is used to diagnostic it.
posted
I'm going through the same symptoms myself right now (tingling in hands, feet, scalp and ears which goes away when I move them). Also hands go numb at night constantly. Also, feel shaky quite often.
I'm being treated with 6 weeks of cefuroxime and I'm about half way through. No significant improvement in symptoms.
Posts: 41 | From Somerset County, New Jersey | Registered: Aug 2006
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I'm going to see a doctor on September... Altough he is not a formal LLMD, he does clinical diagnostics and tests throgh Igenex (got his name from this site and from lymenet.org).
So, I'm still not sure if I have Lyme or other TBD...
My symptoms are pretty much the same, always changing and sometimes I feel well and sometimes I feel terrible (right now I'm feeling terrible...).
I feel on my guts I don't have MS. It doesn't make any sense having CNS lesions and I feel weird things around my body for only a couple of seconds or minutes.
I was on vacation and we hiked a lot, I felt really good, I don't know if exercising helped somehow.
I just want to know what is going on with me... I think everybody in this site feels or felt this one day...
Lymetoo, thanks a lot for posting this reply... made my day... people around me don't realize how I've been feeling lately... I really appreciate it !!
posted
RC, great job of breaking up your text and editing your first long posts!
In case you didn't receive my newbies' links/advise; let me know by PM, private message, and ask for it; I'll send it to you. Some people fall in the cracks during the 2 days daily I check for new members & limited to 5 names only to view & send to.
Glad your MD will be using Igenex.
If you haven't been to TREEPATROL'S NEWBIE LINKS IN MEDICAL, please do. Somewhere in the middle of the links is BUT YOU LOOK OK AND SPOONS THEORY. Read them and copy the links so you can send family/friends who don't understand what you are going thru ok. Good luck this month on your testings to find the CULPRITS making you so sick. Bettyg
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quote:Originally posted by rcs2: Lymetoo, thanks a lot for posting this reply... made my day... people around me don't realize how I've been feeling lately... I really appreciate it !!
You're quite welcome! I was worried about you!!
I'm very glad you will be tested through Igenex. Please get a copy of the test results and post them here for us, OK??
Have a great weekend!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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bettyg
Unregistered
posted
IGENEX did the following on me 4-06:
INITIAL LYME PANELS...specific to your REGION!; is $515.00 except for WESTERN AREA regional panel is $455...
456 multiplex PCR - whole blood 188 & 189 western blot IGM & IGG blood tests is $190 for both
or the PCR & IGM/IGG INITITAL LYME PANEL IS $390.00
390 515 ===
$ 905 TOTAL for these tests!
Call 1-800.832.3200 for CURRENT prices; *************************************** these were the prices effective Feb. 1, 06 !! *******************************************
IT'S PREPAY at the time blood is drawn Mon. - Wed. NOON unless you have medicare; it's free! Bettyg
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sure sounds like lyme disease to me! (I am not a doctor either though, just have had some of those movable changing symptoms).
Remember diagnosis of lyme is from clinical symptoms. Sounds like you found a llmd to see --
please let us know if you feel better after a couple of weeks of antibiotics!
Posts: 2557 | From home | Registered: Aug 2006
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I have no words to say how amazing the people in this forum are.
As you probably know, I'm still waiting to see a doctor, so I don't know yet if I have Lyme or not.
To keep you posted, my symptoms are changing everyday. One thing that I noticed was having an extreme fatigue.
Other day I slept 14 hours... I'm glad I haven't been busy in my job...
I have a "migratory pain" around my body, and sometimes I have a few minute where I think I'll die, everything is exacerbated, and I feel tired after it.
This weekend my fatigue improved a lot, and today I feel better. Let see how long it will last...
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