I've tried antibiotics for a month at a time, herbals at a month at a time, no change in symptoms which makes me think that I don't have lyme.
What do you think? And if this is lyme, is is curable at this length of time.
I've read of people who've had treatment for years and no difference. SO did they really have lyme.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It is important to get tested for a number of pathogens, including lyme and other tick borne diseases before deciding on a treatment course, as various pathogens can give the same symptoms.
Here's something to read...I'll be updating it soon.
posted
I've been tested for all tick borne pathogens, all co-infections came back negative, so I only have teh igenix lyme western blot.
I've also been tested for all the CFS panels, CMV, parvo, HHV, Myclo, EPV all neg
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
It doesn't sound like you have had long term combination antibiotic therapy following ILADS guidelines.
Do you have a LLMD?
It can take long time to see improvement.
I've been treating for 12 months now and I started to see a decrease in my neck pain in October.
You have several lyme specific bands on your WB.
Combine that with alot of lyme symptoms and it adds up to lyme.
It is possible to have coinfections and test negative for them.
Are you taking antibiotics now? Did your Dr only prescribe one antibiotic at a time?
It sounds like it is possible that you are not receiving very aggressive treatment.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
The Lyme may have your immune system shut off
enough to not get positive tests. A LLMD can
evaluate other known coinfection possiblities.
I do not think it is too late.
-------------------- 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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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My question would be.....is CFS treatable? And the answer to that is NO. And you have been ill for 6 years and say youre getting worse; so what do you have to loose? Why not get a LLMD and go from there?
I was diagnosed with FM and was very ill for 2 years. Started treating Lyme and at about a year and a half I had slight improvement.
Also my first WB was negative, second had one significant band and third WB, done a year into treatment, made a positive IGM.
Point is LD is a "clinical diagnosis". Go to a LLMD and get an expert opinion!
You might just find that you have something that is curable. Something causes CFS!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Did someone tell you your test results were negative??????????
Band 83-93 alone says there is no doubt!
"83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi."
You can't argue with DNA. Then there's all those other Lyme specific bands you have.
Can you get well after being ill six years? I would think so! I got well after being ill for 42 yrs!
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
58: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
From 2005:
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
----Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96201 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've known many people that were treated for cancer and their treatment didn't work. It certainly didn't mean they weren't fighting cancer.
Nobody has the lyme disease "cure" just like nobody has the cancer "cure". But I'm fighting like crazy to beat it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6459 | From Louisville, Ky | Registered: Jan 2002
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posted
I have seen LLMD's, however, I couldn't handle the antibiotics after several weeks due to yeast, Yes, I was on the diet, and the antifungals, prescription and natural,
I tried Cowden for a month, but then the alcohol was too much for my Interstitial Cystitis
It Bothers me that there are several people on here that have stated that they'e treated for 1+ year with maybe a little change (which is normal with fbro and CFS). I don't want to do the "get worse before better" with no change.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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posted
It scares me that several people mentioned that they've treated for over year w/ little change in symptoms. And were diadnosed with fibro. So Maybe I just have CFS and Fibro.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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posted
I was previously diagnosed with Fibromyalgia. The diagnosis did me NO good. There is no treatment for something with no known cause.
The only way out is through.... so I don't know what to tell you. It's your choice.
Consider Rifing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96201 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
If you have not seem the movie,"Under Our Skin", I
highly recommend it. It took one fellow 5 years to
get his life back after misdiagnosis after
misdiagnosis. Don't give up. It can happen, just
not as soon as we would like.
-------------------- 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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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
You have specific bands that indicate Lyme. Being tested for all co-infections is necessary too, as Lyme will not go away, unless the co-infections are treated.
Lyme and co-infection treatment can go on for years, it is a marathon. A month of treatment at a time is unlikely to resolve any of the bacterias.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I should clarify that not only is my neck pain getting better, but my fatigue, sleep, hot flashes and brain fog are better for sure.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
You didn't mention being tested for enterovirus (Coxsackie B and echovirus). That should be run at ARUP lab.
posted
Thanks everyone I have been tested for all those tests both you'all and I've listed and more, I've probabaly spent $15000 in tests alone, too many to list
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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