posted
Hi.I was diagnosed w/neuroLyme last Nov. On abx & supplements. Have had to deal w/ waking evry 2hrs in a slight sweat (body temp a degree hi when Retiring & close2 norm During night) since Jan. Symptoms started in lower ribs-then a migrating band of numbness moved down both arms 2 hands over ~6 weeks. Now arms fuzzy when I wake at night- some twitch esp upper left arm. Red blotches on knuckles! Is this Bb slowly migrating?LLMD doesn't think so. Any help understanding phenomena/getting to sleep longer apprc'd.
IP: Logged |
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Is your Doctor treating for coinfections?
Nite sweats are typically attributed to babesia.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
| IP: Logged |
Bb-bitInNH
Unregistered
posted
Nope, Heather. My LLMD said he doesn't find enough evidence for a coinfection. Minor SWEATS didn't start 'til Jan. & I've had abx since orig diagnosis by my PCP Nov 7. HE thinks it's a normal body reaction to a "chronic infection", which I suppose it's becoming. ( What are other symptoms for babesia?
IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
sweats,fever/chills,chest pain,jaw,neck,headache pain,heart pressure...just to name a few.Not everyone gets ALL the symptoms related to babs.
I haven't heard that many people that actually get the anemia. But some do.
BTW the tests for babs are worthless. Many LLD's go by symptom diagnosis. Many treat any way because 1/3 of patients with lyme have babs,
p.s. Babs is a tricky one to treat. If you and your LLD decide to go ahead and treat...I would do a search here on babs. There is a wealth on information.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
quote:Originally posted by Bb-bitInNH: Nope, Heather. My LLMD said he doesn't find enough evidence for a coinfection.
The evidence is right in his face!
Get treated no matter what the dr says, or what the tests say. It's YOUR life at stake!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi MS
You should look into Babs--
Also discribe the rash on your hands- Bartonella (spell) can cause rashes---
Co infections have to be treated at the same time as Lyme --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
Bb-bitInNH
Unregistered
posted
Jay- Looked into Babs. I never had any type of fever earlier. In fact my body temp just seems to wander now between normal & ~99.7 (often that upon retiring) My hands don't have a 'rash' per se, when I wake @ 2or4am, just reddening around some knuckles/joints. Often left hand is asleep (or 1/2). I can get 'em awake OK-stretch&rub but circulation poor on waking. Forehead slightly damp. By morning, back to normal! My immune system's puttin up a fight at night..Before, I would just wake to chest pangs or stomach fibro. Can babs slowly spread down limbs? Idonthinkso
IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Chest pain, sweats, are common symptoms of babs. All the other symptoms you mention can be babs and/or lyme. I'd treat for babs if I were you, if your going to error, error on the side of caution.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
posted
I'll just offer my experience. Treated with IV for lyme only for 6 weeks. Doc said no co-infections per Bowen labs.
After 6 weeks on IV Recephin, the night sweats have subsided. I'm waiting to see if get on orals in the next few weeks to just address latent lyme. So far, so good and I've had this for over 14 years (misdiagnosed with CFS that whole time by another doc).
Dunno.......I'm feeling better and even just started a new job. So far...so good.
Not sure if this helps you but I'm thinking co-infections aren't the diagnosis for everyone. Sometimes, it is just lyme.
But again, I dunno. I am also doing Samento TOA free. I hope my illness has been arrested, but only time will tell.
Posts: 867 | From PA | Registered: Jan 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
treat for babs even without positive tests. \
I treated for lyme 2 times in 13 years and relapsed years after each treatment. Never treated coinfections coz didnt test pos for them.
Now I DO test positive for them and now I am treating.
I never had ANY sx of babs until I started TREATING for it. Then the sweats, dizziness, low grade cyclical fevers began.
Err on the side of caution, as others have said. Do at LEAST one month of babs treatment. If it isnt babs, then the treatment wont be too difficult for you.
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
If your LLMD does not take coinfections seriously, it is time to run (not walk) to find a new one.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
bettyg
Unregistered
posted
deleted dup when it showed I posted too soon within 30 seconds...
IP: Logged |
bettyg
Unregistered
posted
Welcome BB to this 24/7 educational/support group board.
Those of us who have neuro lyme, can't read LONG continuous posts. So I'm going to break this up into 6-8 lines of text and DOUBLE space between them. Please do this in the future for us ok.
Have you had a sleep study done for possible apnea, where you stop breathing during the night. I hadn't slept in 35+ years, and tests showed I have apnea with NO DELTA 4 quality, restorative, healing the body sleep.
At bottom, I'll provide some basic sights, etc. for you.
quote:Originally posted by Bb-bitInNH: Hi. I was diagnosed w/neuroLyme last Nov. On abx & supplements.
Have had to deal w/ waking evry 2hrs in a slight sweat (body temp a degree hi when Retiring & close 2 norm During night)
since Jan. Symptoms started in lower ribs-then a migrating band of numbness moved down both arms 2 hands over ~6 weeks.
Now arms fuzzy when I wake at night- some twitch esp upper left arm. Red blotches on knuckles! Is this Bb slowly migrating? LLMD doesn't think so.
Any help understanding phenomena/getting to sleep longer apprc'd.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective Nov., 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!;
Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures. Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
IP: Logged |
bettyg
Unregistered
posted
breaking up your 2nd continuous post...
quote:Originally posted by Bb-bitInNH: [QB] Jay- Looked into Babs. I never had any type of fever earlier. In fact my body temp just seems to wander now between normal & ~99.7 (often that upon retiring)
My hands don't have a 'rash' per se, when I wake @ 2 or 4am, just reddening around some knuckles & joints.
Often left hand is asleep (or 1/2). I can get 'em awake OK - stretch & rub but circulation poor on waking.
Forehead slightly damp. By morning, back to normal!
My immune system's puttin up a fight at night..Before, I would just wake to chest pangs or stomach fibro.
Can babs slowly spread down limbs? I don't think so
BB, my right hand goes numb as well as right shoulder. I use a small pillow for my right arm/hand...it helps a lot. Good luck to you.
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/