disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I really have no idea what I'm going to do anymore. This might get a little long, but I hope some of you will read and give me your thoughts anyway... because I need them right now. I'm going crazy because I feel like I'm in the dark, so-to-speak....
I'm one of the sad ones who was not lucky enough to have a positive western blot. My western blot from IgeneX (a year ago) only came back with one band and that was 41++ IgG. My CD57 was 18 at that time.
The doctor I was seeing who's very lyme friendly, but not completely LLMD, is the one who tested me and diagnosed me with lyme disease. Believed I had it even though my test was negative, he said it was because my immune system was/is severely immuno-compromised. At this time I was sooooo completely ill.
That is when I came to this site, found an LLMD and went to him. He said I could have lyme and may not... put me on abx and I noticed a difference right away. Felt better, but had to change up meds because the meds I was on my stomach didn't agree with. Through the course of a year, I went up and down. Good days, bad days, good weeks, bad weeks. There was also near a month where I had good days and then went crashing back down.
This is also when we found I had a positive for Bartonella so treated that for four months (I think I still have it though, possibly).
Fast forward to about a month ago, I was put on Biaxin/Bactrim to treat possible Babs. My FISH was negative so my LLMD said no Mepron or Malarone without positive. The Biaxin/Bactrim combo made me herx for 4-weeks straight. I took a few days off of abx and felt better nearly right away. Got back on and herxed again.
Then per hematologists instructions (because of a low white blood cell count) I have been off abx for two weeks. Out of two weeks, only had a few bad days, the rest seemed to be rather okay, which was surprising. Then I had a really bad day the other day where every joint in my body was extremely stiff, so I took some Doxy and it seemed to help somewhat...
Anyway, I'm just really confused... I don't even know anymore what to believe. I am not complaining; I am glad I'm having mostly okay days while off abx, but it's just confusing me and making me doubt again. I doubt my lyme diagnosis a LOT. But I have/had sooooo many symptoms of lyme disease, Bart, AND Babs.
I have/had 46 symptoms out of 75 on the Canlyme website, I had my CD57 tested a few months ago and it was 9.
Also, I saw the tick on me. I had the bite and had to pull it out of me. It was 10 years ago, and I had symptoms come and go all those years until last year when I got very, very ill.
I'm sorry this was so long. I doubt many people will read it because of that reason. But I'm really about to lose my mind.
I'm having my husband tested for lyme tomorrow by IgeneX because he has a few worrisome symptoms.
It's just so annoying. I'll finally believe that I do have lyme, but sometimes things happen where I'll go into doubt again. I just don't know what else could be causing so many multisystemic symptoms, but I've been tested for just about everything else. So, so far all I have positive is Bartonella.... but I have symptoms of lyme AND Babs too, and a very low white blood cell count which a hematologist cannot figure out the reason for.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Disturbed, I read what you wrote and I'm just going to use logic. One, lyme tests no matter how sensitive are only confirmation of the disease only. Too many people fall through the cracks because the tests no matter how good are not sensitive enough to catch everything. So with that in mind we have to fall back on the symptoms. You have over 50% of the symptoms for lyme. Which is also the same symptoms for heavy metals. Unless you have a mouth full of amalgams and worked at a place exposing you to constant rash of mercury. I would discount metals as the issue. You were well and then you weren't well. The immune system isn't easily compromised unless it is lyme. The immune system over time can rebound against many diseases unless it is lyme.
If you are expecting some diffinitive clinical test to tell you, you have lyme. It may not happen and so what. You just need to depend on your own intellect to tell you what logically you already know. And just find some inner peace and more weapons to fight the disease.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i was undiagnosed and untreated for 10 years.
then one year alternative stuff that didn't work.
then 2-3 yrs abx and one year detox.
i was 80% better-able to work-and i maintained that with supplements for about 5 yrs until i had a bunch of stress and went downhill
now i am back on abx-some i never had before
most people i know use abx for awhile. then maintain on supplements and life style changes. i think we all pretty much think we will be dealing with lyme and coinfections the rest of our lives unless something big changes in research
i can't work...have trouble being in a relationship...and it is about all i can do to take care of myself...but i'm still alive, and can read a book or watch a movie-walk the dog-mess around in the garden-talk to my kids on the phone.
i'm not surfing and riding and skiing like i planned on doing after the kids left the nest.
when it gets depressing to me...i can usually think of something worse that has happened to someone else
i'm pretty sure the answers are not far away and if we can get the ins companies and drug companies to stop controlling everything a cure could be figured out
oh-and i know many llmds who would say that 41+++ is positive.
good luck. hang it.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bettyg
Unregistered
posted
disturbed,
yes, we all go thru what you are, etc. tests do NOT always tell 100% what is happening to each of us.
by the way, OUTSTANDING JOB of breaking up your text for your story; did NOT seem long to me the way you presented it!!
co-infections screw things up; i'm going to test for that again using fry this time. just got to stop procrastinating and being here on the board so i can take care of ME !!
don't give up; many are walking exactly in your shoes with what you do have! continue sharing your story and see what is happening others with YOUR diagnosis and symptoms!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
You really need to find a LLMD.
A negative Fish from Igenex doesn't mean you don't have babesia.
Mine was negative, but remember they only test for 2 strains and not the 13+ strains.
As far as the doubting the diagnosis thing.....I believe that is very common with Lyme.
Especially based on the fact that the tests are not 100%.
Have you thought about re-testing since you've done some antibiotics.
Maybe for peace of mind.
I only had one band via Quest come back positive.
Thank God it was a Lyme specific band.
My LLMD has never seen the need to re-test me based on that one band and my symptoms.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Geneal - I do have an LLMD. I was seeing one, but am going to see another one because the first one wouldn't treat me for Babesia with Mepron or Malarone because of no positive test even though I have/had Babs symptoms. Have an appointment with new LLMD, but it's not until August.
I do want and need to be retested by IgeneX, but might wait a couple more months to do so. The reason being, I am having my husband get tested TODAY actually. And then later, I probably will again. Just money-wise it's not the greatest.
I was tested again a month or so ago by Lap Corp WB but that was COMPLTELEY negative, so bands showed up whatsoever, which upset me but didn't surprise me.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Peacesoul
Unregistered
posted
I read the post.........I feel exactly the same. In fact, I think most lyme patients feel the same.
The testing and treatment for lyme is all a shot in the dark. There is nothing conclusive about this illness.
My Igenex came back with a few lyme bands along with 41 +++ on both iGM and IGG and my LLMD said it was lyme. I was dx with Lupus, CFS and then lyme.
I take abx, I stopped abx, I take natural meds, I stop natural meds. I feel good, I feel bad. It's never ending.
There is only one soultion, keep on searching until the truth appears. Until then, eat well, stay healthy and stay focused. There is nothing much more we can do.
You have Lyme. I feel better off abx, too, because I'm not killing bugs and have a lower load of toxins.
Hang in there until your next LLMD appt. Perhaps take the time to do some heavy detox. That way you'll be in the best shape you can for starting back on meds.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Since your body is capable of running smoothly (without antibiotics!)some of the time, it should be capable of running smoothly most of the time.
If you feel crummy on abx, and the crumminess persists until you get off the abx, it's not a herx, its a defect in detoxification of the med.
Generally, a smooth running machine will continue to run smoothly, as long as it is powered with the proper energy, it isn't dirty with environmental pollutants, and the removal of waste products is not hindered.
Beyond a certain age, which differs from person to person, but is often somewhere around 40-50, the smooth running requires intellectual labor to identify cause and effect relationships.
Since symptoms fluctuate, as does weather, pay attention to rapid fluctuations of atmospheric pressure. You will see alot of people with different forms of arthritis who can fairly accurately predict the weather.
If a drop in atmospheric pressure results in worsening of symptoms, you are likely vitamin D deficient, if the opposite is true, and high pressure results in symptoms, you likely have a problem with your thyroid or adrenals.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
DoctorLuddite - so what are you trying to tell me exactly?
I am pretty sure it was a herx with Biaxin and Bactrim combo. I've been on both at different times (months apart), I never had a problem with either one.
Are you saying I have arthritis just because? Even though I'm only 24 years old!? And I had arthritis in my fingers way back a little before high school even.
I do have hypothyroidism (and am treating it) and have not noticed weather or change in pressure bring on or make my symptoms not as bad, and have not noticed this with my vit. D deficiency (though this has been treated).
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
If you are doubting Lyme as your diagnosis - DON'T!
With a CD57 that low and herxing, you have it. I see the "inventor" of the CD57 and believe me, he'd treat you until that was way up. Only LD and co-infections (according to him) lower this specific test.
There are no perfect tests for LD, Igenex is good, but not perfect, Lyme is a clinical diagnosis - period.
45 symptoms - don't doubt what is wrong. You even saw a tick!
Now for the flip side..I think we all doubt. I have had 3 years of positive LD tests through Igenex and treated all that time. I never saw a tick bite, so I doubt my diagnosis because I am not always convinced antibodies = infection, but it must be what I have, nothing else fits.
I understand 100% what you are feeling...been there.
You need further treatment if you base it on Burrascano's guidelines. Many ILADS LLMD's agree that your CD57 must be in the 100's at least or you will relapse, it just proves sort of the level of infections.
I have made it my rule of thumb, when a mainstream Md or specialist cannot figure out what is causing something - it is Lyme - don't doubt or you could be led astray.
Stay on this path...you are on the right path I am sure.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
quote: Then per hematologists instructions (because of a low white blood cell count) I have been off abx for two weeks. Out of two weeks, only had a few bad days, the rest seemed to be rather okay, which was surprising. Then I had a really bad day the other day where every joint in my body was extremely stiff, so I took some Doxy and it seemed to help somewhat...
Anyway, I'm just really confused...
Some abx can drop the white cell count. Not saying that is the reason, though.
The sudden appearance of joint symptoms could be die off, or sudden inflammation. It looks like your symptoms are off and on, when you are off abx.
That sounds normal to me! I have gone off abx too, for clearing the system, and had reactions.
Sometimes it is good because it lets the immune system "flex" its muscles a bit. Then when there is die off, there is reaction, such as joint pain. There are joint products on the market, to ease you through this. The doxy can be anti-inflammatory, which helped relieve pain.
The bactrim can treat both bart and babs. The biaxin treats lyme, too? (check on that).
The fact that you are feeling frustrated with all this come and go stuff, can be an expression of the internal infection. I think that the body gets tense when it has to fight...cortisol and all that.
I would guess there is something going on still. I am sure your new llmd will help evaluate and get you back to a steady state.
The bactrim is a sulfa drug. I read where it, and septra, can reduce folic acid, so you may want to consider some supplementation.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
How have your vitamin D deficiency and thyroid dysfunction been treated? Alot of docs use D2, and it doesn't work all that well. Thyroid dysfunction is easily treated but poorly understood, it's easy to add some kind of thyroid hormone and get a response, but you disconnect the thyroid from nervous system regulation, and fix your metabolic rate at one speed, so to speak; the metabolism is supposed to adjust for daily differences in demand. Do you have dental amalgams? Do you take omega 3 fatty acids?
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
I think doubt just comes with the territory. We all want to trust our doctors and then we are hit with this and we start questioning everything.
Even with my positive Quest and IGeneX test, I doubt things all of the time.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
DoctorLuddite - Yes, I have been treated for my hypothyroidism. It's been going on a year now. My LLMD has checked on it and even changed the dosage a couple of times. I know a lot about thyroid disorders because before I was diagnosed with lyme, I was first diagnosed with hypothyroidism and for a LONG time thought it was my thyroid making me sick and that I didn't have the right dosage and/or medicine so I read up a TON about it and even ended up bugging a bunch of doctors about it.
My LLMD did find the Vit D deficiency and put me on 50,000 IU a week. It was below 7, and last time we checked it was up to 37, which is normal, but still on the low side. So I am taking a month more to see where that'll put me.
I do not have dental amalgams, never have.
And I do take flax seed oil capsules. I'm vegetarian, so I will not take fish oil.
Thanks for all your help. You're very well informed.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
The 50,000 IU prescription (green capsule) is D2, a total level of 37 equates to (if your D3 level is still 7) an effective D level of ~15, which is still quite deficient.
A bona fide D3 supplement is better, but try to get some midday sun without sunscreen; use caution to not sunburn.
The thyroid issue is a sticky one, vitamin D deficiencies and thyroid disorders are linked. Something often at the root of thyroid disorders is iodine deficiency, but selenium and tyrosine could also be low. The vitamin company NOW makes a supplement called "thyroid energy" that has all three of these, plus some B vitamins.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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