posted
Hello, I am quite new to this board and am relieved to have found it.
After a Dx of FMS & CFS in 2003, and continued to get sicker, I was given a Clinical Dx of Lyme in Nov 2005 by the LLMD in Hope BC.
Although I tested negative (ELISA) for Lyme, I tested low positive for Ehrlichiosis and Rocky Mtn Spotted Fever.
3-4 days into the ABX treatment (Ketek and Flagyl) I herxed severly and have been herxing almost steadily since, with some miserably bad days and some not so bad days and a few really good days.
A few improvements but much worse pain, fatigue and burning hot.
I am discouraged and wondering if maybe I don't have Lyme and taking the ABX has made my FMS and CFS worse.
Maybe this sounds 'dumb' to you all, but I really would appreciate some imput.
Going the Western blot route is one I am trying to avoid ($$$$), and it isn't necessarily 100% all the time.
I have thought of stopping the ABX, waiting 10-14 days and having the Lyme and co-infection test again.
I live in Manitoba and have to travel to BC to see the LLMD.
My GP in Manitoba would order the blood tests, I am quite sure.
What do you think?
Thanks,
Happygranny
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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posted
I understand your concern. One thing that comes to mind is "I've never heard of antibiotics making FM or CFS worse." Never. I don't see how it could make anything worse, except maybe yeast or C-diff.
That said, I would highly recommend WB testing. It's only about $200-250 and would likely bring you alot of peace of mind! Sure, not all tests come up positive, but if yours does, or if Lyme specific bands show up, then you'll KNOW you have it.
Have you read all the info on herxing and on FM and CFS here on Lymenet?
I was dxd with FM 25 yrs ago, and my cousin was dxd with CFS. We both have Lyme instead.
I'm not even sure there is such a thing as FM. CFS could be caused by Lyme or by other bacterial causes not yet discovered. Just my opinion.
I hope you will continue with your treatment. There's alot of hope with continuing....and virtually none with stopping.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Granny, if you're herxing......that tells you what you need to know.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Thanks for the responses Lymetoo and Boomerang.
I guess I was just getting discouraged and needed some reassurance. Thanks for giving it to me. It is good to know you have never heard of ABX making FMs worse.
Yes, I have done a lot of reading, here and at Canlyme, and have been treated for Yeast with Nystatin and Diflucan, as well as eating a lot of plain good yogurt and taking Probiotics.
Herxing is what I am doing, so I am sticking to the treatment.
My husband is retired, and I am receiving a small disability pension and we are very careful with our spending, but probably the Western Blot is a good idea.
At the same time, I have heard that if you go off the ABX for 10 - 14 days, and have an ELISA test, you have a better chance of an accurate result from the antibodies.
Being in Canada, the test would be free.
Thanks again, Feeling encouraged again.
happygranny
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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with Lyme treatment it can take a very long time to feel better. There are some people who feel an immedediate improvement. I definitely don't belong to this group.
My treatment started in October 2003. I got worse and worse and by Christmas I was barely able to drag myself from the bed to the couch. I stayed very bad until April and only in May I had the impression that I might be a tiny bit better - but was not even sure of it.
From then on I continued to improve - very slowly - and sometimes I also got worse again and then I felt completely desperate and thought I would never ever get well again. Today, I'm still not completely well but compared to two years ago there is a huge difference.
For example yesterday, I woke up and knew that I had one of my worse days. Nevertheless, I spent 1,5 hours in a furniture shop (with all the smells and lights that I couldn't support for so long). After a break with reading on the couch for 1 hour (wasn't able to read more than 5 minutes in my bad days) I went to three other big shops. Then more reading.
In the evening I went to do Nordic Ski with my husband for 45 minutes and I managed to have him complaining about me going too fast and not making any breaks. Then I used my FIR-Sauna for 30 minutes and stayed up until 11.30 p.m.
This morning I felt absolutely okay. Two years ago a little walk exhausted me so much that I felt bad for 1-2 days after.
You need a lot of patience with this disease. Keep going - you will also get better.
All the best,
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Happy Granny. What a great name!
As others have noted, your response to the antibiotics has clinched your diagnosis of Lyme.
Also, considering you tested positive for co-infections, it's pretty likely you got Lymed at the same time!
Just so you know and feel an increase in confidence, about half of those with late stage, chronic lyme test negative by ELISA. (Donta, 2002 study.) So please don't let that dissuade you from thinking you really have Lyme.
It's my personal belief that the ELISA screening test belongs in the garbage can, since so many people are refused further diagnostic consideration based on a negative ELISA.
But don't get me started on THAT topic!
Since you don't have insurance issues to worry about in beautiful Canada, you can feel confident relying on your LLMD's clinical diagnosis unless you want to spend $200 (USD) on IGeneX testing.
Hope your herxing mellows out soon. Do keep us posted, neighbor to the North!
a Newfoundland expatriate,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote:Originally posted by happygranny: At the same time, I have heard that if you go off the ABX for 10 - 14 days, and have an ELISA test, you have a better chance of an accurate result from the antibodies.
[/qb]
I've been around here for 5 yrs and I've never heard anyone say that about the ELISA. I agree with what Michelle said about the ELISA! It belongs in the garbage can!
I DO know that going on abx, then OFF for 2-3 wks before testing on the Western Blot can trigger a better response of antibodies, and thus making the test more likely to show positive.
But then you could also go with your LLMD's clinical diagnosis. I agree that the herxing you are having confirms your diagnosis.
We're so glad you found us! The treatment can get very rough, but you just continue to look for that light at the end of the tunnel.!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Ganny-
Today seems to be one of those days. I don't feel well after being go good for so long. It doesn't take much to get the lyme brain filled with doubt and worry.
You seem to be on the right tract with your treatment. Great! Your herxing and pain sound normal. I have never had a positive WB. I could care less.
I have had 2 positive Elisas and a PCR, years ago at this point. So the pile of evidense is a bit higher here. I was also positive for bart and RMSP. My husband has never had any positive( the 5 bands deal) WB, but has tested positive on some bands. He has babs too. My son's positive WB was discounted because it was a "strange" combination of bands and initially denied treatment by his PCP. Does your doctor want a WB? Our funds are too precious and are used for drugs as much as possible.
FM is not a disease but a cluster of symptoms with an unknown cause. Or was that CFS. Both are also clinical diagonis if I remember correctly.
Tomorrow is another day, hopefully with fewer symptoms and less doubt.
posted
PS...My western blot was not CDC positive either, but that's because I've had it for so long and because I was treated with methotrexate and steroids by an idiot rheumatologist 10 yrs ago!
Mel....Hope you feel better soon!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Happy Granny, I would absolutely NOT do ANY further testing at all. Reason is,,, if it comes up negative they have something to hang there ever so silly hat on,, of denying further treatment and pull out THAT test, wave it in your face, and say SEEEEEE, ya dont have it, this PROVES it!!
Reality says it doesnt prove a thing. Too many ducks out there looking over your shoulder.
You have alot more to lose than to gain having the test. As long as your LLMD can continue to treat on sxs. ,,let him go at it. It is a slam dunk you have it, WHY TEST???
The peace of mind it "MIGHT" offer isnt worth the price of a lame wrong test!!!
Save your money and stamina for the real deal fix. Even IF they are paying(insurance there) its one more red flag they can wave!!
My 2 cents worth (pretax)!!! from --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Wow, do I ever appreciate all of you taking the time to post for me and reassure me that I am doing the right thing.
I really needed to hear all the things you have said. So did my darling husband who is being so wonderful to me.
Thank you again,
Jeannie
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Took five week of biaxin 500 2x a day before I felt relief. The first pain to go away was the horrible pain in my hands.
This is relatively fast compared to others with lyme.
Also I tested positive thru Igenex even while on the antibiotics.
Good Luck,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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