Aa
Do I still have lyme?
Doctors unable to give me a definitive diagnosis. What diseases cause Brain lesions? I'm told there are five. Please read below.
I am a female, 5'6, weight 135, current age, 48. Grew up in Southborough, MA, had 3 dogs, all got lyme disease there. I used to pick the dozen or so ticks off them everyday using tweezers. I was very active, walking 2 miles daily, until these past 3 years, when I got much worse. I got very sick when I came home from a 10 day vacation on Nantucket Island, M.A., in August of 2004.
To date:
Have had almost every test possible for blood, looking at in depth blood panel for RA, Srodgren's, Lupus, etc. also had spinal, and evoked potentials for MS. Only things showing up after 3 full years is slightly low IGG and Cortisol, just recently. Also, a slight elevation in protien in urine which is so low, sometimes it's there, sometimes not, for past 2 years. Plus tested positive for Lymes Disease on ELISA, but showed no Bands. Do have about 5-7 Brain lesions in white matter. The biggest lesion shrunk more than 50% coincidentally after receiving IV Rocefin for 4 weeks through my ID doctor once the ELISA test came in. Neuro doc says it may or may not be MS as lesions don't look like MS lesions, except for a small cluster on right side of brain. Suger level was low, 90, once, then 134 during the spinal tap. Test for Diabetes was negative.
Current Symptoms are: Aching joints and muscles, TMJ, weakness, dry eyes, eye pain, fatigue, thorasic pain in both arms, starting at shoulders moving down the sides,to elbows, then sometimes the into wrists. water in both heels, and if I do too much, I get a full body attack of inflammation and fatigue that lasts for 2 weeks or more, to which i've taken Naproxen, which helped, but killed my stomach. Every morning I wake up and arms are asleep, as if circulation is poor. Lifting arms up is getting harder to do. (Had this before and seemed to improve with the Rocefin). Short term memory loss. Difficulty getting to sleep. Legs fall asleep from just crossing them.
Past symptoms (past 7 years), break out of hives over trunk of body, very often, throat closed once and landed in emergency room for shot to breathe. Aching knees, and swelling one to another feeling like water on knee. Inflammation in heels, Pain in both upper arms. Get rash on face and neck after shower, but does subside within an hour. Upset burning stomach. Night sweats at age 39, lasting for several months. Was not menopausal at time. Had an occurrance of partial paralysis in right arm, took cortisone pack, by next day was better.
Brain fog symptoms started 3 years ago.
In last 3 years, feel weaker and weaker all over. Get tired easily. Got Rocefin IV again last Jan. 07 for 5 weeks. Felt some improvement, but not as much as the 1st time with the IV the year before. Recenlty, I tested negative for lymes through a special lab that just looks for lyme in NJ. Could this still be lyme? Why are my symptoms getting worse?
Please help,
Thanks,
SC
I am a female, 5'6, weight 135, current age, 48. Grew up in Southborough, MA, had 3 dogs, all got lyme disease there. I used to pick the dozen or so ticks off them everyday using tweezers. I was very active, walking 2 miles daily, until these past 3 years, when I got much worse. I got very sick when I came home from a 10 day vacation on Nantucket Island, M.A., in August of 2004.
To date:
Have had almost every test possible for blood, looking at in depth blood panel for RA, Srodgren's, Lupus, etc. also had spinal, and evoked potentials for MS. Only things showing up after 3 full years is slightly low IGG and Cortisol, just recently. Also, a slight elevation in protien in urine which is so low, sometimes it's there, sometimes not, for past 2 years. Plus tested positive for Lymes Disease on ELISA, but showed no Bands. Do have about 5-7 Brain lesions in white matter. The biggest lesion shrunk more than 50% coincidentally after receiving IV Rocefin for 4 weeks through my ID doctor once the ELISA test came in. Neuro doc says it may or may not be MS as lesions don't look like MS lesions, except for a small cluster on right side of brain. Suger level was low, 90, once, then 134 during the spinal tap. Test for Diabetes was negative.
Current Symptoms are: Aching joints and muscles, TMJ, weakness, dry eyes, eye pain, fatigue, thorasic pain in both arms, starting at shoulders moving down the sides,to elbows, then sometimes the into wrists. water in both heels, and if I do too much, I get a full body attack of inflammation and fatigue that lasts for 2 weeks or more, to which i've taken Naproxen, which helped, but killed my stomach. Every morning I wake up and arms are asleep, as if circulation is poor. Lifting arms up is getting harder to do. (Had this before and seemed to improve with the Rocefin). Short term memory loss. Difficulty getting to sleep. Legs fall asleep from just crossing them.
Past symptoms (past 7 years), break out of hives over trunk of body, very often, throat closed once and landed in emergency room for shot to breathe. Aching knees, and swelling one to another feeling like water on knee. Inflammation in heels, Pain in both upper arms. Get rash on face and neck after shower, but does subside within an hour. Upset burning stomach. Night sweats at age 39, lasting for several months. Was not menopausal at time. Had an occurrance of partial paralysis in right arm, took cortisone pack, by next day was better.
Brain fog symptoms started 3 years ago.
In last 3 years, feel weaker and weaker all over. Get tired easily. Got Rocefin IV again last Jan. 07 for 5 weeks. Felt some improvement, but not as much as the 1st time with the IV the year before. Recenlty, I tested negative for lymes through a special lab that just looks for lyme in NJ. Could this still be lyme? Why are my symptoms getting worse?
Please help,
Thanks,
SC
I was diagnosed with Lyme (western blot positive) & I had the classic bulls eye rash in June 2008. My doctor gave me doxycycline for a month. I retested for lyme the end of Sept., this test came back positive. Should I be worried?
Congrats to you Susan for looking for and then getting answers.
Hopefully others will read your post and understand that testing for Lyme and all the Tick-Borne Illnesses is a very flawed state of affairs.
So many diseases mimic LD,,yet our medical establishmet isn't educated enough to allow us sick patients a Level testing Field.
How many are misdiagnosed each day?
I was diagnosed with MS many years ago,,and now I am treating my MS with antibiotics,,,and I am on my way to health.
thanks for sharing your journey....hopefully your story and steadfastness will influence others to do the same.
tory
Hopefully others will read your post and understand that testing for Lyme and all the Tick-Borne Illnesses is a very flawed state of affairs.
So many diseases mimic LD,,yet our medical establishmet isn't educated enough to allow us sick patients a Level testing Field.
How many are misdiagnosed each day?
I was diagnosed with MS many years ago,,and now I am treating my MS with antibiotics,,,and I am on my way to health.
thanks for sharing your journey....hopefully your story and steadfastness will influence others to do the same.
tory
Band 41 is NOT specific to BB, but band 23 is.
Below is the breakdown of the Western Blot bands:
9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
Hope this helps!
Below is the breakdown of the Western Blot bands:
9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
Hope this helps!
I was just diagnosed with lyme disease, finally! I tested positive for Lyme disease on the Western Blot that followed my Elisa test that was also high.
By CDC giudelines, I would not be positive. However, I am seeing a lyme literate Doctor who studied under Dr. Burrascano @ Columbia U. before his retirement.
I popped positve for 2 bands, IGG 41. and IGM 23. Both these bands are specific for Lyme and only lyme. CDC would have called it positive if I popped for only one more band, band 39.
Dr. Steere of Yale who's published lots on lyme, says if one has positive bands 41 and 23, they have Lyme.
The 3 lessons I learned are: 1) request your lab results and review them yourself. You should not have any bands showing positve! And, if you have only one positve band, and its IGM 41, and you have the classic symptoms, you have lyme.
2) Forget CDC guidelines, and, 3) get a lyme literate Doctor.
Sincerely,
Susan
Thank you for your posts.
Carol, I am not familiar with MDL. Is it a lab?
Carol and LymeSucks: My labs from NJ were all negtive for co-infections. My SPECT Scan was abnormal, ( showing lesions), and consistant for lyme as well as lots of other diseases, although I have tested negative for everything else.
{My new Doc wants to put me back on IV @ West Chester County Hospital and alternate w/ 3 or more antibiotics for 3 or more months. I hope this works because I am feeling weak and my circulation is getting poorer as time goes by. }
Have you heard of lyme infection causing poor circulation, and arms and legs to falling asleep alot?
Also, My Lyme Specialist Doc said my labs showed that I have low Cortisol and Low IGG. Do you know of anyone that had these types of tests results on Cortisol and IGG?
Any input is much appreciated. Thank you.
Carol, I am not familiar with MDL. Is it a lab?
Carol and LymeSucks: My labs from NJ were all negtive for co-infections. My SPECT Scan was abnormal, ( showing lesions), and consistant for lyme as well as lots of other diseases, although I have tested negative for everything else.
{My new Doc wants to put me back on IV @ West Chester County Hospital and alternate w/ 3 or more antibiotics for 3 or more months. I hope this works because I am feeling weak and my circulation is getting poorer as time goes by. }
Have you heard of lyme infection causing poor circulation, and arms and legs to falling asleep alot?
Also, My Lyme Specialist Doc said my labs showed that I have low Cortisol and Low IGG. Do you know of anyone that had these types of tests results on Cortisol and IGG?
Any input is much appreciated. Thank you.
I've got Lyme, Babesiosis, & Bartanella. I have many of the symptoms you describe. I also had a brain spec scan done which showed swelling--no wonder I can't think!
From what I've learned from my support group,...........looks like you weren't on IV long enough. A month worth of treatment IS A JOKE unless you JUST contracted it. I'd say, try to get on it for as long as you can, argue w/ your doctor about it if you have to. Recovery is a slow process. It didn't work as well the second time because the bugs are smart, they learn what’s coming to kill them and they adjust accordingly to survive; the drug looses it's effectiveness.
Get blood tested for ALL co-infections asap, if you haven't already. I believe people who "relapse" never successfully killed it to begin with.
From what I've learned from my support group,...........looks like you weren't on IV long enough. A month worth of treatment IS A JOKE unless you JUST contracted it. I'd say, try to get on it for as long as you can, argue w/ your doctor about it if you have to. Recovery is a slow process. It didn't work as well the second time because the bugs are smart, they learn what’s coming to kill them and they adjust accordingly to survive; the drug looses it's effectiveness.
Get blood tested for ALL co-infections asap, if you haven't already. I believe people who "relapse" never successfully killed it to begin with.
Were you tested for other tick borne infections?
Night sweats may be a symptom of Babesiosis.
http://www.lymeinfo.net/coinfections.html
Were you tested at MDL? They are supposed to be very good.
You said that you had improvement with intravenous Rocephin.
A number of people at the flash discussion group at LymeNet dot org have relapsed after stopping intravenous antibiotics.
Perhaps you need further treatment.
Carol
Night sweats may be a symptom of Babesiosis.
http://www.lymeinfo.net/coinfections.html
Were you tested at MDL? They are supposed to be very good.
You said that you had improvement with intravenous Rocephin.
A number of people at the flash discussion group at LymeNet dot org have relapsed after stopping intravenous antibiotics.
Perhaps you need further treatment.
Carol
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