posted
Seemed to start about 2 mos ago slightly in legs and mid section.
Things to the touch seemed less sensitve. As time went on it went to nose, ears, mouth, feet.
This past week 1/2 it has gotten real bad
Its not numb and tingling but like i feel less pain. Things that would tickle before i barely feel.
Smelling and taste seem different..
An example would be when i leave my eyes open for a long time they don't burn like they used to. in fact they don't hurt at all.
I can pinch my arm very hard and it doesn't hurt
Keep in mind it is my entire body.
I have had numb/tingling areas all before this is entirely differnt.
I'm freaking out.
Any advice would be appreciated.
Been treating for Lyme for 4years in August.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Sorry to hear you're experiencing this. It is frightening. Maybe someone here can think of something to help.
Are you still rifing? Did the odd sensations begin when you began that?
Wonder is you need a type of amino acid. I know nothing of these things but maybe a neurotransmitter is out of wack.
Just hoping the knowledgable ones respond.
Hang in...I know, I know,...you have no choice.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Are you on antibiotic therapy? Do you have an LLMD?
It sounds like your Lyme is progressing to a dangerous degree.
I would definitely talk to your Doctor right away and get in for some scans/testing ASAP. This is a dangerous sign.
Then it seems you might need to discuss switching to a new antibiotic therapy, as declining that much over so long sounds like worse than plateauing on treatment, but actual backsliding.
I hope for the best for you. Please see an MD or LLMD ASAP - this kind of deterioration most definitely involves the brain and nervous system, and should NOT be taken lightly.
Please get some help immediately and keep us posted ok?
posted
I came off Mino about 2 months ago and prior to that i have doen a lot of abx.
Most recently i have coiled for the last 2 months
mostly for lyme mixed in babs and bart most recently.
I have not coiled at all for week 1/2 so i don't feel it could be a herx from that any longer.
I do need another llmd - not happy w/ current one.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by ctlyme: I came off Mino about 2 months ago ... Most recently I have coiled for the last 2 months
I am wondering if there might be a direct causation between stopping your antibiotic therapy and your new worsening symptoms. They both happend about 2 months ago, right?
posted
I did just go back on the Mino about 4 days ago b/c i'm so freaked out.
Up until the the week 1/2 i felt decent and was thinking it may be b/c of the Coil but in the back of my head i wondered if it was b/c i was not killing(herx)w/ABX.
I also started Diflucan(did for 5 days)and today started olive leaf in its place.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Have you been treated for parasites and worms? They play a MAJOR part in Lyme disease. I would highly suggest you research this angle.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
When coiling, what *seems* to happen quite a bit is that when when one population of bugs gets beaten back a bit, another comes on very strong. I have heard from many patients with the exact story. This happened to me last December, with different symptoms than yours, and just now, after six months, it seems to be easing a bit. It is somewhat terrifying when this occurs, as you need to experiment to find which frequency will knock out the new bug.
Good luck.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
i have done humaworm awhile back. Saw no evidence of worm in my bowel movements.Stayed with it for the month and did not feel any better.
Never did Salt/C.Little nervous about it and it seems alot of people have to stay on this therapy indefinately which makes me uneasy.
i have considered that a new bug is emerging after coiling.
If it were night sweats or stretch marks w/ soles of feet hurting it would be more comforting b/c then i could attribute it to something i could recognize as Babs or Bart.
But these symptoms are crazy and don't seem to fit.
thank you for all of your responses.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It sounds like severe neuropathy; can you get in to see one of the neuro LLDs in CT ASAP????
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
ctlyme I felt sorta the same way before diagnosis. I hurt yet at the same time I felt someone could throw me off a building and I would not feel it -until the next day.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Betty is gone, she was fired for some serious improprieties.
Have you tried Dr. K in Orange? For neuropathy Dr. W is really great, but so is Dr. K. I'd say that is where you need to be.
I've had a heck of a time. Dr. Lantsman stopped seeing Lyme patients, so I went back to Dr. W. I need IV abx. He has been good but has this policy where he will not prescribe the PICC line for people too far out of his area, so for the last several months I have been to a couple different PCPs trying to get one to prescribe a PICC line so I can get back on the IV Rocephin, which Dr. W. will prescribe.
Having no luck.....I just made an appt today with Dr. S in Bridgeport; Dr Phillips recommended him to do the IV, as Dr Phillips won't do IV either. Dr. S DOES do IV, is actually really cheap, and I got in within two weeks.
I am not sure overall how good he is but I know right now all I need is someone to order my darned PICC line, so even if I just get that from him I can return to Dr. W for the ongoing Rocephin.
I am fortunate that I got approved finally for SSDI a few months back so now I have Medicare, and it only costs me $26 to see Dr. W now, whereas Dr S is going to be $300 out of pocket. However it is well worth it if I can just get my PICC line.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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