posted
everything seems to be either negative or nonreactive except the C4 serum was flagged as high 37 (range is 9-36)
28 kd(IgG) reactive
I have no idea what this means, my doc said possible acute lyme disease and am taking antibiotics.
also had CD 57 tested and not sure what that means either...I can post all those results too if I need to, thanks!!
Posts: 287 | From somewhere | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome. It's always sad to see new people here, but we hope that you can get in and get out of all this and feel better as soon as possible.
As you are about to find out, it's all rather complex.
It would help if you post the name of the test and the lab.
Also, there is no test that can rule out lyme. It's to be a clinical diagnosis, based on history, symptoms with tests being just part of thought process.
Some lyme experts take the history and symptoms into account and if there is even one band reactive on either IgG or IgM Western Blot, suggest treatment.
The fact that your doctor speaks to "possible ACUTE Lyme" might be a clue that he does not believe in chronic lyme.
Or - are you recently exposed, bitten, and bothered with symptoms. If a new case, hopefully, this should be easier.
I assume you have some of the classic lyme symptoms or you'd never have been tested.
Did you EVER have a bulls eye rash? If so, that is a clear answer.
You should probably also be assessed for other tick-borne infections. Some of those tests are a bit clearer, at times, and (if positive) may help shine some light on lyme.
It's nice that your doctor is open to the idea of lyme (as so many are not), however, if he does not have years of experience JUST with lyme and other tick-borne infections - and with treatment protocols tailored to each patient - there may be only so much your doctor can offer.
There are also other chronic stealth (hidden, hard to test) infections that your doctor might consider but if you can see an ILADS-educated Lyme Literate (LL) doctor, their experience will be your best bet for the next step. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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I hope your doctor told you to take probiotics before starting antibiotics (abx) . . . and all during. Just timed away by a couple hours each direction.
There are also some herbal supplements that can help prevent or minimize systemic yeast (candida) infections that often result from abx use.
Olive Leaf Extract is the number one helper, after probiotics.
And, as for the antibiotic, combination treatment is best as in even just 20 minutes of abx, the lyme spirochete can morph into a microscopic round hard cyst form and a different class of drug is needed for that (flagyl).
Liver support is also very important.
Sorry to toss so much out there but this is a very complex journey and if you have all the bases covered from the get go, you may be able to clear this sooner.
Treatment would still be several months, though. Ideally, two months past when symptoms clear.
Most doctors will treat only for 1 - 14 days with one single drug. Usually not enough but most doctors just have not been given the chance to have the best information.
Sadly, Lyme has become very "controversial" and politicized.
posted
Hi, thank you for the quick response. I've never had the rash. I've been diagnosed with Hashimoto's thyroiditis(with hypothyroid symptoms) I've read that lyme can mimic a lot of the symptoms of hypothroidism..here's a few of mine
chills off and on but especially at night body aches poor sleep/insomnia muscle twitches(these are driving me nuts!!) constipation fatigue irritability weight gain lip/chin tingling(dr thinks a very slight case of bells palsy) spleen enlargement...not sure....i get a lot of pressure at the top left of my ribs...thought i've read the area and the pressure are related to the spleen(I could be wrong though)
the test done was the western blot(a lot of stuff was checked!) the name of the lab is Quest Diagnostics in CA....I understand about clinical symptoms being a major factor in diagnosis...I'm just the type of person that when I get a test result, I have to know what it means!! Posts: 287 | From somewhere | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- This explains a lot about the Western Blot - copy this to your computer study file for easy reference:
27 REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR -
[ 10-27-2011, 05:07 PM: Message edited by: Lymetoo ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The symptoms certainly mesh. Have you also noticed
any changes in your hearing? Do you enjoy music?
Enjoyment of public places with lots of people?
Is your balance good?
What about lights, especially "naked" light bulbs and those in grocery stores? Are those just fine for you? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
This is a must-read to understand more about Lyme testing in general, and why it matters where and when you get tested.
28 kDa is an antibody to an outer surface protein of the Lyme bacteria
(kDa stands for kilodaltons, and each number is the identifying weight of each different antibody)
I'm not a doctor of course, but your symptoms do sound like "late-stage", "late disseminated", or neurological Lyme to me (all mean it is advanced). Also known as Chronic Lyme, because once it invades the nervous system, it is much harder to treat and reach.
According to your symptoms list, you would appear to have neurological involvement, with muscle twitches and tingling, with irritability, and maybe even the insomnia is partially due to neuro symptoms)
The CD57 is falling further out of favor as a useful means to tell at what stage a person is in their Lyme infection/treatment. There are so many times where the numbers can be opposite of the facts, that it seems to be a nearly meaningless test to many LLMDs.
The theory is that severely low CD57 levels only relate to those with Lyme, and that if one sees a raise in those levels with treatment, then the treatment must be working.
But many times the levels don't match up with how the person is feeling. Some can have very low levels and feel they are at 100% remission, and others the opposite.
The C4 serum test I have no idea about - hopefully someone can answer that for you.
It's good you are on your way with treatment, but finding an LLMD (Lyme-literate MD) who will make sure you are treated with the proper meds at the proper dosages and lengths is very important.
You should also be evaluated by an LLMD for possible co-infections - many of which need different meds than straight Lyme would.
The links below should be helpful getting started with understanding Lyme and treatment, etc. I'm glad you are already on the path with treatment.
posted
wow, so much info! so much better than what I could find on my own. thanks so much! I"ve only been able to read just a little but will have more time to go over it more tomorrow!
My doc has me on antibiotics for 2 months~and wants me to be retested in December. do the antibiotics mess with the results? do I need to stop taking them the day before? the day of the testing? I will request to be tested for co infections too.
Changes in my hearing..I've noticed that I can't hear someone talking to me if there's more than one person talking in a room.....really loud noise(like my ds having a meltdown and screaming) hurts my ears...it's like it's magnified 10x's!!, balance is good,
No, I don't like to be in public places if they are crowded. I try to do all my shopping/errands when I know the stores aren't super busy. I"m not sure about naked bulbs...those are without a cover on them right? I think they are too bright. Fluorescent lights really bother me though, makes me feel a bit woozy. oh and I enjoy music:)
now about the CD57 just curious cause all of mine are not over 60 or even close
Posts: 287 | From somewhere | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is NO NEED to retest for lyme.
Lyme is not going to go away that quickly and there is no test that can prove it's cleared. There is no current cure for lyme. Two months is just a blip on the screen. With the symptoms you describe, likely at least 6 months - 1 year (or more) of treatment to really have a good effect.
I hope you can find an ILADS-educated LLMD. It's good that your doctor is willing to do 2 months treatment but if he thinks a test will be of any help in 2 months' time, he just does not have the education needed for you at this point.
He may still be an excellent GP for support care and monitoring basic tests (such as liver function), along with a LLMD.
------------
Sound, Lights & Action
Ah, sounds hurting the ears and it being hard to follow conversation in a busy environment due to STIMULI OVERLOAD.
What you describe is HYPERACUSIS (sensitivity and pain to even normal sounds). A very common lyme symptom.
Yes, "naked" lights that I refer to mean, uncovered. It's best to have full shades.
Same with the Fluorescent lights. Avoid them, as much as possible. Stay out of stores as much as you can. Order or have friends / family shop for you. I can't tell you how important this part is as the stress from shopping can impede tremendously your ability to heal.
If you have Fluorescent lights at home, do not use them. Put incandescent lamps even in your kitchen. Some of the new low-energy bulbs can also be very hard on those with vestibular symptoms.
Depending upon the age of your son and his "melt-downs" a Torchiere lamp that bounces light off the ceiling in the kitchen is better than the fluroescent overhead which also buzzes.
Your son may have fewer meltdown avoiding all this, too.
Yes the new energy saving bulbs are great to save on electricity but they can really mess up a lot for someone with health concerns.
By law, though to save on energy costs, regular light bulbs will not be for sale after the end of this coming December. Buy up what you can now. Go for the warmer tones.
And, if you have to have some Fluorescent bulbs, say canister ceiling lights, get about a 3,000 K (Kelvin) in the WARMER red hue. You do not want a cool blue.
Most stores also hit you with tons of chemicals, and not just in the fake scents but in dyes, finishing stuff to make things shiny, etc.
My guess is that certain smells also affect you but, even if you are not aware, they do. They add to the toxin load and stress the liver and the endocrine system.
Going scent-free at home can help.
The inner & middle ear are often affected by lyme - but also be certain Rx (especially azithromycin - zithromax - and by minocycline).
LIVER SUPPORT is vital - itcan help your liver move out toxins better and that will help your ears.
MAGNESIUM & ADRENAL SUPPORT can help your body better manage the effects of stress.
Your inner / middle ears (vestibular system) also affect vision, ability to handle busy places, balance, etc.
GINGER Capsules can help. Magnesium, too.
But, a LLMD could help so much by telling you all this. With the vestibular symptoms, you really need to be assessed for Babesia and for Bartonella. They often go with lyme and each has different treatments.
This is a lot to take in but it's important that you have this detail. Just take one breath at a time for now and do the best you can with nutrition.
No aerobic exercise but gentle movement is good as best you can. Warm (not hot) baths in Epsom Salts are helpful as is a MAGNESIUM SUPPLEMENT.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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Just about every one of these can be from lyme or other tick borne infection. However, they can also be for other reasons.
Most ear doctors don't really know much about lyme so if you do seek out a specialist find a neurotologist who is ILADS-educated and LL so they have the necessary knowledge base for the best assessment.
Most of these symptoms clear with good treatment and good self-care and a good LLMD can usually handle all this for you and will refer you on if deemed necessary.
AVOID STEROIDS
And, if you are working, you might be able to use this list to get some reasonable accommodation on the basis of vestibular condition and not even have to mention lyme.
Be VERY, VERY careful about telling anyone about lyme (especially at work). It can come back to bite you.
Again, the very best of luck to you. Hold on and take care. Enjoy the beauty of this fabulous autumn. Beauty is still be here for you. Appreciate and revel in all the beauty you can. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Not sure where in Illinois you are but I just sent a PM to you with the name of a LLMD in Indianapolis, IN.
Maybe others will send you other suggestions for IL and the surrounding states.
To open a PM, log in and click on the flashing mail icon.
If you think your doctor would be open to reading more, the ILADS site is for doctors and patients. It would be so good if he would watch this:
AND - Oct. 28 - 29, FRIDAY & SATURDAY, they have their annual conference with much of streamed.
posted
Keebler.. There IS a good LLMD in IL... Sorry I can't send you the name due to your PM's being disabled.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tutu,
Just reset my settings. PM function is on now for a day or two.
I am not in IL but am FROM there so this might help my family or others in future - and when I see others from IL needing one. But Illinois is a might long state.
If that IL LLMD is in Chicago area, Indianapolis might be closer and less traffic for those in the mid to south-eastern areas of IL. Of course, the best doctor is the goal.
I hope you sent that IL name to BuffyFan.
Thanks. -
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