Your antibody test came back with no signs of Lyme. Your cured.
I know many of you have said I need to find another Dr. and I have called a few and there are still some others to call, but why if Im antibody free.
Because I hurt like h**l.
Just because I only had acute Lyme I'm cured.
This Dr. has tested me for Lupus , rheumatoid arthritis, Babs, and a western blot recheck.
He states I'm telling you you need to loose weight. I left their crying. He wants me to loose weight.
What happens when I loose 80 lbs and Im still sick with pain? What happens when the when the tingling and headaches get so bad that I cant take it anymore? I was never sick before and now I get diagnosed with Lyme and its like all these things are in my head.
Sometimes I wish I never let them run that original test for Lyme. Im so hurt, angry and I give up.
I just want my life back and they wont re treat me for Lyme.
Why is when I go on Doxy I get better then I go off and the symptoms come back?
Why is it only my left shoulder , knee, ankle and neck and back are riddled with this pain.
Sometimes I feel like I have pins and needles in my hands.
I have kids to play with I don't want to be this way. How can I treat myself? I will order the meds over sea's if need be.
Im very sorry for the rant guys but Im so upset. Thanks Cat
Posted by Keebler (Member # 12673) on :
- It's so sad to hear of you being treated this way.
First of all, an essential clarification is needed:
WHAT antibody test? An ELISA? WHAT LAB?
The Elisa is known to be a bad test but the main government groups still insist upon its use).
I see you had a retest of the WESTERN BLOT.
IgG & IgM, both? WHAT LAB?
ONLY IGENEX does the Western Blot test correctly, testing all the bands.
Still, NO TEST can rule out lyme. Lyme is a clinical diagnosis. Most doctors are not well enough educated to do this.
27 REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
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As for loosing weight, right now don't focus on that. Focus solely on a healthful life style.
If this is lyme,
1) Lyme can CAUSE weight gain, even for someone with good health habits. That resolves with lyme treatment - and adrenal support.
Good food, real food (nothing processed), no additives . . . that's the main focus for now.
2) aerobic exercise can be very dangerous & damage the heart and adrenal system. (Safe exercise guidelines are in the "Diagnosing" thread below). -
Posted by Keebler (Member # 12673) on :
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posted by Keebler (Member # 12673) on :
- You ask: "How can I treat myself?" (end quote)
Did you EVER have a bulls eye rash after a tick bite? Ever? Or ANY other kind of rash?
Not every one who contracts lyme has the bulls eye rash, and for those who do get a rash, they can vary . . . but a bulls eye rash is lyme (or STARI and that's also basically lyme).
It is important for you to be properly assessed for the variety of possible tick-borne infections -- or for other chronic stealth infections,
perhaps certain deficiencies or other conditions that might mirror or accompany lyme.
You really need - and deserve - a clearer picture of what might be the CAUSE(s).
Is there anyway you can get to an ILADS LL doctor? -
Posted by Keebler (Member # 12673) on :
- REQUEST a COPY OF ALL YOUR TESTS from your current doctor(s).
Don't call them directly but work through their office manager or whoever handles all the paper matters.
Do not tell them why, just ask for a copy of all the tests from one date to another date (you may have to sign a form).
You need, specifically to see:
THE BANDS TESTED on the WESTERN BLOTS
Even if ONE of those is positive, that can be telling.
In the "Diagnosing" Thread above, the bands are discussed. -
Posted by catina (Member # 35873) on :
Keebler the first Was a western blot at Lab corp. The retest was a western blot and Babseia.
Posted by catina (Member # 35873) on :
Keebler in the first test I had lyme then they treat me one round with 21 days of Doxy 200mg.
I went off that meds and it came back so I did another round of Doxy this time I doubled the 21 day dose. So I was taken 400 daily for like 10 or 11 days.
Posted by Keebler (Member # 12673) on :
- Sorry - my replies are rather disjointed. I should have stopped before I even opened this thread . . . but . . .
Backing up, he said you are "cured" -- so then, you did test positive at one time?
He said you had "acute lyme" but it was gone now.
I sort of missed that part.
After reading the threads posted for you, you'll see how lyme does not go away that fast . . . it can become chronic, indeed, and short courses are often not adequate.
So, you need no more lyme test if you had one positive. Do still get copies, though.
So, yes, then . . . you know you are dealing with lyme. But you don't know what else. A LLMD is still important to assess for coinfections, etc.
Babesia is hard to test, too. And there are two types that should be tested . . . but often it can be the experience of the LLMD that can guide you on this.
Do you think there is way to get to a LLMD? I will post some articles that may be of help, either way. -
Posted by Lymetoo (Member # 743) on :
Does your doctor call it "lymes" too?? If so, I would run!
Posted by catina (Member # 35873) on :
im going to call one more Dr. in Rhinbeck and see if they take my insurance.
Posted by catina (Member # 35873) on :
Lymetoo how do I go about getting a test like that?
Posted by Keebler (Member # 12673) on :
- If she already had a positive lyme test, no repeat test is necessary, though.
She did have a positive to start with, it seems or she never would have been given those two rounds and declared "acute lyme" -
Posted by catina (Member # 35873) on :
Im coping this from one of my first posts. I hope it helps I have my labs here with me and it looks like my IgG p45 is present. then the others numbers look negative. then Im also looking at what appears to be the Igm bands and it says that Igm p41,39,23 are present. my dr. says that this is early lymes and it is most likely 1 to 3 months post bite. but why does it feel like Im back peddling here. Am I always going to feel like my back and neck are broken ? What do I do from here I dont want to be like this anymore. I dont know what else to do. After the visit with my Dr. I just want to cry. Can anyone help me understand this. I have been reading the links here that everyone has been recommending to others. I just feel helpless now. Thanks
Posted by Keebler (Member # 12673) on :
- IgG positive band: 45 is present.
Igm positive bands: 41, 39, 23 are present.
------ That certainly tells a lot.
Others can take it from here, I have to stop. For tonight, just rest. Rest and eat a good dinner. Know that this will get worked out - somehow.
Tonight, just take care of yourself. -
Posted by Keebler (Member # 12673) on :
meets every 4th Wednesday at 6:30pm at 84 Zena Rd in Kingston (Hudson Valley Sudbury School). -
Posted by Kudzuslipper (Member # 31915) on :
Catina, if you feel good on doxycylcine... Stay on it. Try to convince your doctor, that it is used as an acne treatment, and for rosecea, as well having anti inflammatory properties. If he/she doesn't want to call it Lyme, call it what ever they want and just keep you on this mild, therapeutic abx.
I get angry when I hear that people like you are being denied a drug that helps their symptoms, and has few side effects.
Hang in.
Posted by TF (Member # 14183) on :
catina, you are getting the typical lyme disease run-around. I got it and so did many, many others on this board.
You have to get to a lyme doctor and then you will be rid of all of this demeaning, ridiculous treatment.
A true lyme doctor is expensive, and there will be a wait, but it will be so worth it because you will be with someone who understands how to treat lyme and actually get RID of it for you!!!
The lyme doctor knows that all of your symptoms are from lyme disease. You need a lot more treatment.
By the way, there is no "s" on the word lyme.
Posted by Lymetoo (Member # 743) on :
"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." ---Dr C of MO
-------
you can order the test kit for free.. pay when you send in the bloodwork .. but you don't need another test... just a good dr .. as it appears that your first test is positive and you are still sick ..
SEE "TF's" REPLY ON THE ABOVE LINK. PERFECT EXPLANATION!!!
Posted by WendyK (Member # 18918) on :
The beginning of your story sounds very much like mine. My primary doctor wouldn't go past the two rounds of 21 day of doxy. So I finally decided it was time to hit this full-on and get a llmd. Just so happens my Dr. is very close to where you live, PM me if you want more info. I don't know of any that take insurance though. I just have to submit claims for an out of network dr. and cross my fingers. Good luck!
Posted by Ellen101 (Member # 35432) on :
I feel your pain. Its awful when you are so sick and feel alone. But you are not alone. There are wonderful resources on this board with so many knowledgeable posters. I don't know if you are willing to travel, but my LLMD is in RI and she is wonderful! My PCP was awful and even after a swollen tick bite and subsequent joint and muscle pains she was reluctant to treat me.
Posted by jmb (Member # 18338) on :
From Lyme I have learned that a doctor who uses the word "cured" is not a doctor I want to see for anything.
Posted by aperture (Member # 34822) on :
Please get to an LLMD ASAP.
You are in an area of the country that has many LLMD's (unlike KY which has none).
I was given 2 weeks of Doxy for lab confirmed Ehrlichia last June. I felt great for 2 months after. Then the fevers slowly crept back and the symptoms came back stronger than ever before.
Lyme and Brucella (in my case) had 5 months to become more entrenched in my body while I was dealing with the ID Dr's run around. I didn't get to an LLMD until Nov, by then I had low grade brain swelling and horrific brain fog.
This is a nasty, sneaky bacteria. If not treated properly, it will only become stronger and more difficult to treat.
Posted by Catgirl (Member # 31149) on :
Catina,save your money. Your health is worth it. The best lyme docs don't take insurance (they don't want insurance companies telling them what they should be doing or how little they should help their patients--based upon antiquated guidelines).