posted
all of you have been terrific can anyone give my there thoughts on my results? I started Doxy Thursday and they gave me medication for the headaches but it made me sick. IGM Results 39 IND 41++
IGG 31 IND 39 IND 41++
Taking B12 shots 2x's a week Magnesium baby asp. Maxalt MLT for headache (Not Good) Cymbolta 60mg 1x switched me from zoloft after 8 years Took me off Actos 30mg. Doxy 100mg 2 X's a day Today headache, foggy, shaking, tremors, numbness in left side of face, Big joint and back pain, muscle ache,light sensitive, belly hurts tonight, nausea. Today sucked!
Anyone have any thoughts? Thank you.
Murph257
Posts: 22 | From East Quogue, New York | Registered: Feb 2011
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posted
based on your results, i think you can be sure you have lyme!
from my understanding, "IND" are just as significant as "+, ++, +++, & ++++"
also, band 39 is the biggest red flag for lyme disease out of all 15 anti-bodies.
what did your doctor say?
my IGG results are VERY similar to yours. the only difference is i also have **34 kDa IND... everything else is EXACTLY the same, and my doctor just diagnosed me with lyme!
Posts: 442 | From usa | Registered: Oct 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
I agree at the least it indicates exposure to the LB bacteria (a term LLMD's use when they have to be careful with the state medical boards watching over them).
41 is a flagella which indicates a spirochete bacteria. The others while not positive are equivocal (indeterminate) indicate the tech saw something related to those bands.
You are on the right path with Lyme, now you need to see if there are co infections.
Remember just because a test is negative does not mean you don't have a tick borne disease. Tests are not reliable in the sense they produce many false negatives.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thank you all. He is treating me as if I have lymes. Every else came back negative, He said he would do s regulars blood panel after one month but I would stay on the Doxy for 3months then switch to something else. I feel horrible this morning. The pain and the fogginess suddenly feel amplified. I have to get the right medication for these headaches because they are over the top. I have lost 30 lbs since November (not that I didn't have it to lose) but I am 48 years old and I am 9 lbs from my high school graduating wt. It was a task just writing this. BTW I pulled 2 ticks of of me on Thursday. Thanks again. Murph257
Posts: 22 | From East Quogue, New York | Registered: Feb 2011
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Be sure you are taking that doxy WITH food and preferably in the middle of a meal. Then do NOT lie down for at LEAST 30 min afterward.
I hope your dr will up the doxy to 400 a day when you are able.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Murph,
I wonder if you have ever read the Burrascano Lyme Treatment Guidelines. I strongly suggest that you read and study them. This is how you will get your education on lyme disease.
Without an education on the disease, you won't be able to judge if you are receiving good treatment or not.
You also won't understand what is happening to you as you treat.
So, it is always good to educate yourself.
I am glad your doc tested you for lyme through Igenex. I hope he also tested you for babesiosis, bartonella, and ehrlichia.
You see, you generally get much more than lyme disease from your tick bite. For example, everyone in Maryland who has lyme also has babesiosis and bartonella. The ticks here must be carrying all 3.
I am concerned about how your doctor is treating you. He is giving you only doxycycline and at a very low dose (100 mg twice per day) and he is going to keep you on that for 3 months.
That is not Burrascano type treatment at all.
From page 14 of the Burrascano Guidelines:
"There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration."
Notice here that Burrascano says you need at least 300 mg of doxy per day. Otherwise, you will not be killing the lyme. Instead, doxy is "bacteriostatic" at that dose--it just keeps the lyme from multiplying.
Also, as you read Burrascano, you will see that he recommends a person take 2 different antibiotics at a time to properly treat lyme disease. That is because lyme can easily evade just one medication by changing form.
In addition, your coinfections must be treated.
So, I hope you will consider finding a doctor who follows the Burrascano Guidelines. That is what got me well and all of my friends.
Many doctors treat lyme disease, but not many know how to cure a person of it. I think your doctor does not know enough about good lyme treatment.
I am sorry to tell you this. But, it is very common. It is a rare person that picks a great lyme doctor for their first doctor. There is a learning curve that has to occur before a person can really figure out who is good at treating lyme. That's what you have to do.
I hate for you to waste 3 months on a low dose of doxy and probably not get very much better. So, I'm trying to save you time in treatment.
I wasted 2 years treating with a doctor who didn't know enough to get me well. He had me on only one medication for lyme, just like you. He never tested me for coinfections (apparently just like you). These are really bad signs.
In Seeking a Doctor, they send you a list of all the doctors they know who treat lyme disease. That does not mean that all of these doctors are equal at getting people well. It is just like any other area of medicine.
Why not contact the lyme support groups in your state (see Support Groups on left side of page) and find out who they consider the best doctors.
In general, the best doctors have a long wait to get in with them. Also, the best docs don't take health insurance. This way, they can give you great care. Also, the best doctor may be far away from you. So, I advise you not to make cost, location, or insurance your criteria for picking a doctor.
Rather, pick the one who is getting people well.
It takes many years of treating lyme disease for a doctor to develop enough expertise to cure someone because this is an extremely complex disease. Try to find a doctor who has cured at least 3 people of this disease. Otherwise, you will treat for years and never get done treating.
It was by studying the Burrascano Guidelines and even hearing Burrascano speak a few times that it really got into my head how important high dose antibiotics are, and combinations of antibiotics, and testing and treating of all coinfections so that a person can recover from this disease.
I'm glad you are getting some treatment. Now, see if you can get better treatment.
I completed my lyme treatment 6 years ago and I am still symptom free, enjoying my life. I had undiagnosed lyme disease for 10 years.
It was my third lyme doctor who knew enough to cure me.
I stick around LymeNet just to help new people who don't know how to tell if their treatment is good or not and to point people to the best lyme doctors so they don't have to spend years trying to get rid of this disease, like I did.
I wish you the very best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF, Thank you so much for taking the time to respond. He did mention that he may up the doses and that they were going to add something else in 2 weeks. Meanwhile, I will do the research and keep looking for the right Dr. It is so crazy how I have left a wake of these guys behind me. I had an LP 2 weeks ago that was a disaster. I wound up in the emergency room in agony even after they filled me full of dilauded. I was so out of my mind I pulled everything out of me and began trashing the place. They did a blood patch and 15 mins later I was fine. 1 Dr. said I had MS, 1 said it wasn't and one said it was inconclusive and wanted me to get another LP (yeah right) all said absolutely no lymes . It is so hard to decipher the bs especially when you aren't feeling well and that fog is hanging over you. I will keep you posted. Thanks again. Murph
Posts: 22 | From East Quogue, New York | Registered: Feb 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I hope your lyme doc didn't order the lumbar puncture! They are a waste. Non-lyme literate doctors order that test. Read it in Burrascano.
I had that test too, when I didn't know any better.
The headache from hell is a common side effect of a lumbar puncture. Also, a blood patch is commonly needed when your spinal fluid keeps leaking out of the hole they put in you.
Let everyone read and learn.
Well, glad to hear your doc is going to up doxy dose and add something else.
Did he test you for the lyme coinfections?
Posts: 9931 | From Maryland | Registered: Dec 2007
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