posted
He ran the Elisa and Western Blot again. Does not think its Lyme. He said since I had had these problems for a while the IGM should not have been the one to show positive.
He says he thinks its Fibro with a few other things thrown in there.
Square 1..............................
I am going to cut down on the diet drinks. I am also going to exercise as much as I can. I am going to try to cut out the white stuff (sugar, bread etc.)
See what happens........
Posts: 347 | From WV | Registered: Jan 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Can you find a LLMD?
That would be my first choice. Life style changes can help but will not cure lyme & co-infections. Lyme is a bacterial infection.
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Sorry to hear that. I have an ID appointment next week and that is exactly what I am afraid of.
Posts: 33 | From North Central PA | Registered: Jan 2007
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posted
Lifestyle changes can help but I agree that they won't cure you.
Find a LLMD. The typical IGG and IGM cycle is not the same with Lyme as with other infections. My LLMD said that with Lyme they repeat cycle and it does not show the expected reactions so specific bands and symptoms are more important in deciding if you have Lyme.
I went to 2 IDs and they swore I didn't have Lyme but had Fibro and possibly MS. I went to a LLMD and got abx and I am 90% better than I was for the previous 5 years. I am off pain med and all other symptom control meds.
It is your health, keep looking. Read all you can and find a LLMD.
Cutting sugar and white garbage did help me with inflammation and is a good idea
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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WildCondor
Unregistered
posted
Why are you going to an ID doctor? that is the worst thing you could possibly do. The IDSA (Infectious Disease Society of America) do not believe in Lyme disease!
Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis. With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years. Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots. But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies. Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result. Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa. Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it. But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM. In regard to the outer surface proteins, think of it like the skin of a human.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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A LLMD knows this & knows lyme still remains a clinical diagnosis. ID's don't have a clue.
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Utterly typical.
Lacking in even the most rudimentary understanding of the immune response to borrelia burgdorferi. Pathetic.
These doctors are so arrogant and self-assured in their stunning lack of knowledge that even a positive western blot doesn't perturb them.
But let's see: we already KNEW it was going to go this way because you were seeing ID doc. (Yes, I do understand one or two posters have found a good ID doc and I am really happy for them but yours is by far the more typical scenario).
You will not get better with an idiot like this.
I am not trying to be harsh, but when the average LymeNet poster knows more lyme science than your doctor, it is seriously past time to get another doctor.
Do not waste any more time on this flea brain.
Even presenting him with peer-reviewed studies refuting this nonsense will be in vain. Doctor egos are rarely small.
Keep moving.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Not all ID MDs are "idiots". And, not all LLMDs are the better choice. For some of us, an IDMD who is LL is a financial necessity, as they do take insurance. And yes, there are some LL IDMDs.
I take issue, as always, with the generalizations some of you make. Being closed minded isn't helping our cause.
Posts: 1452 | Registered: Feb 2004
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
beachcomber;
Not all ID MDs are "idiots". And, not all LLMDs are the better choice. For some of us, an IDMD who is LL is a financial necessity, as they do take insurance. And yes, there are some LL IDMDs.
I take issue, as always, with the generalizations some of you make. Being closed minded isn't helping our cause.
Ditto! My doc is an ID and a blessing.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by beachcomber: Not all ID MDs are "idiots". And, not all LLMDs are the better choice. For some of us, an IDMD who is LL is a financial necessity, as they do take insurance. And yes, there are some LL IDMDs.
I take issue, as always, with the generalizations some of you make. Being closed minded isn't helping our cause.
No - of course you're right.
Based on the fact that two LymeNet posters out of about ten thousand have managed to find a lyme literate ID, we should go ahead and encourage new patients to believe that ID docs are great at diagnosing lyme. Never mind that their professional society (IDSA) claims that chronic lyme doesn't exist. Why, there could be two or even three ID docs out there who disagree, so it's statistically reasonable to believe you're going to be lucky enough to find one!
I did not say "ALL ID docs are idiots."
I said, "You will not get better with an idiot like this."
As to the competence of YourTroubl's ID doc, well, her post speaks for itself. The experience is typical.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I am going to wait for the new test to come back. Because if they are negative, then its a big possibility I dont have Lyme. I did not have the Elisa before. The Neuro went straight to the Western Blot.
This doctor seemed far from being an idiot. He seemed very intelligent and very interested in helping me.
One advantage over all my other docs..This one is drop dead gorgeous. That can never hurt; Posts: 347 | From WV | Registered: Jan 2007
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Sorry to say, but I think you are wasting your time with this ID duck.
As a West Virginia native I would love to find someone in the state who knows about Lyme and tickborne infections, but I have traveled with hubby to many states -- most recently to Pennsylvania and previously to New York among other places. Even in those states there are many docs who don't have a clue about Lyme.
Hubby has been in the ER 7 times since last December and the hospital twice -- don't want anyone else to end up like this. Hubby stopped treatment for about 6 months due to ulcers and unexplained back pain and we are back to square one after 3 years of steady improvement.
The neuros tested hubby for a one in a million disease (stiff man syndrome) but refused to even do basic tests for Lyme and tickborne diseases because he has been treated and should be cured.
One simple way to prove to yourself if you have Lyme or another tickborne disease is to take some of the Buhner herbs from the Healing Lyme book and see if you herx.
Artemesia or Artemesinin for babesia or Andrographis for Lyme. If you feel much worse if you try a small dose of these herbs then you most likely have a tickborne illness. Start slow -- 1 capsule of one herb the first day. If you can work up to 3 or even 6 capsules per day after several weeks I think you will have an answer.
Or try Cat's Claw or Samento drops.
If you had cancer you would go to a cancer doc if you could afford one. Lyme and tickborne diseases are just as complicated and difficult to treat in my opinion.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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