posted
I have been battling "something" since 1995 and the Doctors have been no help. They have run every blood test imaginable and still no answers.. Doctors have suspected Lupus and Lyme but they say the tests came back negative. I guess the Lyme tests are not very acurate. I wanted to explain my symtoms and see if it at least sounds more like Lyme or Lupus.
I grew up in Mass/NH as a kid and was biten all the time by all kinds of things. I remember a bullseye once or twice when I was little too so I was exposed to ticks.. Now for my symtoms:
Extreame fatigue (going on 10 years now) -My body crashes everyday requiring 45 min naps in the mid afternoon. -Any form of exercise like the treadmill wipes me out for the rest of the day. -I work from home but most of my day is wasted resting. -Brain fog is an on/off problem throughout every day.
Sensitive to Sound and Light. -Intense sun causes dizzyness, brain fog and makes me seek immediate sleep. Many times I am driving and I find myself pulling over for a 45min nap before I pass out from exhastion. I have to avoid outside light in the summer time.
-Very sensitive to noise. Even a faint sound drives me insane when others don't even hear it.
Often feel like I have the flu. I feel like my body is constantly fighting something.
Mornings I always feel stiff with aches everywhere. Swelling? This goes away by mid-afternoon.
Sometimes I feel A-OK with no symtoms. It's like a 50/50 thing.
I wake up fine every morning and feel only semi-rested but I don't have any trouble getting out of bed. It's usually 2 hours after I am up when I start feeling tired again and want to rest. I mention this because this is not a depression thing. I have lot's of will power to do things and then my body gives out while in the middle of doing things..
Posts: 57 | From St. Peters, Mo | Registered: Apr 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
hi Tom You might be in the right place-- sure sounds like you are.This is a good site for you to do your reasurch. Spend some time here-learn what you can- Make copies of info--to take to doc. Make a list of your symptems dates ect. Lyme is serious stuff. Time is not on your side. You must take control. --Looks like you have figured out what is wrong with you.-so get help now. Ask questions--you will get answers Be as prepaired as you can be when you go to see docks- --Your symptoms sound like lyme to me.-- --jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Tom it absolutly sounds like lyme you need a LLMD as soon as possible a LLMD Stands for Lyme Literate Medical Dr. Go into the Dr section and post for a Dr LLMD in your area.
Newbies List
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
A copy of this is stored in computer Help section.
Updated 04/22/2005
[This message has been edited by treepatrol (edited 25 April 2005).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
ALl of your symptoms sound very familiar. I can't guarantee you that you have lyme, but I can't guarantee you that you don't. And after 10 years, Im certain doctors can't figure it out either, which must mean it
must be some "elusive" thing, such as lyme
That's just my opinion though. You have a LLMD in Springfield MO. If you havent posted in seekign a doctor yet, you could do that or email me
and I will give you his contact info
and you can see what kind of help he can give you for lyme.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Tom,
I didn't believe I had LD until I had a sleep test and found out I was waking up 116+ times a night from pain.
Get a sleep test and have your thyroid tested. These are all things the Lyme will mess up.
When you take and antibiotic do you feel horrible a week to 10 days later? That is a herx and is a sure sign.
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
Welcome to LymeNet. There is a lot of overlapping in symptom lists for Lyme & Lupus, so misdiagnosis is common.
Warning - Since your info sounds so much like Lyme, do not take steroids until you are evaluated by a LLMD.
Steroids suppress the immune system, which gives the Lyme bacteria a big advantage. This results in your symptoms getting much worse. Also, it may complicate treatment of Lyme in the future. If you are taking steroids now, you'll have to ask your dr how to taper off.
I agree with the other responses that you need to be evaluated by a LLMD. Dr C is in MO.
I hope you're near Springfield. If not, then for safety you need to have someone drive you!! It also helps to have someone without brain fog listening to what the dr says.
Don't know your age, but - if you had a bull's eye or two when you were a child & you were not treated adequately, then you have Lyme disease. Your immune system may have been keeping it under control until 1995 when your problems started.
In my case, I removed a tiny tick (after 4-6 hours attachment), had a bull's eye rash a few days later, but NO other symptoms for 5 to 10 yrs. Sounds vague about the time frame, but I don't know exactly when I had the tick bite.
In the last 10 yrs when you've had symptoms, have you had antibiotics (abx) for something like ear or sinus infection? Did you notice any change in your symptoms, either better or worse?
If you did, this could have been the result of some of the Lyme bacteria being killed. But if you did not take a strong enough dose for a long enough time, then some of the bacteria would have survived.
Make an appt today for an evaluation by Dr C.
Stay with us on LymeNet & give updates from time to time. We'll be wondering how you're doing.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Have you had any of these blood tests?
ANA Sed rate (erythrocyte sedimentation rate) Lyme western blot
Often, in Lyme the ANA and Sed Rate are normal but the Western Blot will have Lyme specific bands. I suggest you get a Western Blot and ask for a copy of the result. If any of these bands are positive (even one) that indicates exposure to Lyme-18, 23, 30-31, 34, 37, 39, 83, 93. The lab and doctor may interpret the result differently.
A bulls eye rash is diagnostic for Lyme.
Also, I suggest you make an appt with an LLMD ASAP.
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
PS The Lyme screening test has a VERY high false negative rate-so high that a negative test is meaningless. You stated your Lyme test was negative. Exactly what Lyme test?
Posts: 2001 | From NJ | Registered: Mar 2005
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posted
Hi tom! You've been given excellent advice here, especially the part about Dr C. He's the best, and you need a good LLMD RIGHT NOW!
The Lyme tests are pretty lousy, but most importantly, the LABS are inadequate. You need to have your testing done by a lab that is set up to do testing for this.
Most folks here use Igenex Labs in California. Your dr most likely doesn't even know about that lab. Igenex tests for more bands and for more strains of lyme than the others.
You need a Western Blot, by the way. Do you know if you've had that? I would call your dr's office and ask them to fax [or mail] you a copy of the test results.
posted
Sounds like me a couple of years ago. I was in 3 small car wrecks from falling asleep on the road. Chronic fatigue was by far the worse symptom. I've found that irrigation with CS (I use homebrew PLUS 250 ppm msp) works great for that "brain fog". Good luck!
Posts: 731 | From Humble,TX | Registered: Feb 2005
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posted
Failed to mention that you also need to be tested for babesiosis, which you could have gotten at the same time as the Lyme. It causes severe fatigue too.
The more I read, the more I am confussed because the symtoms for Lupus and Lyme are almost identical.. How can I go about figuring out which one it is? Are there any specific questions that will lean someone towards one or the other?
The Lyme test I had was several years ago when I lived in Seattle. I have no idea where it was done. I think is was "Pac Lab". Anyway it was a western blot. I still have little faith in it.
My current Doc suspected Lupus but said its such a hard disease to diagnose since my blood work including SED rate were all normal. And I spent a fortune on blood tests.. CBC, Metabolic Panel, T4, Thyroid Hormone, ANA, C-Reactive Protein, Rheumatoid Arthritis, etc. All came back "Within normal range".
With Lyme is it common for the Brain Fog to come and go throughout the day? Sometimes I feel like such an airhead and sometimes I am feeling prety sharp..
Does it make sense that exercise makes the symtoms worse? The Dr. said exercise should help no matter what ailment I have.
Anyone with LUPUS knowledge? I bet some people have wondered if they had Lupus or Lyme.
Posts: 57 | From St. Peters, Mo | Registered: Apr 2005
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posted
Tom, I have read that all Lupus patients have a positive ANA. If one does have a positive ANA, it doesn't necessarily mean you have Lupus, but if it is negative, as was yours, it's fairly certain that you do not have Lupus. Have you had tests run on your immune status? I definitely agree with everyone else that you must see an LLMD and definitely get tested for co-infections.
Good luck!
Posts: 14 | From West Windsor ,NJ,USA | Registered: Apr 2005
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posted
I believe many of us in this group do not believe in "auto-immune" diseases such as lupus. I think if they look hard enough they will find some type pathogen, Bb or something else causing the lupus "symptoms".
Posts: 731 | From Humble,TX | Registered: Feb 2005
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posted
My ANA was normal so maybe Lupus is not it.
I am looking into LLMD. I live in St. Louis and I see lot's of praise for Dr Crist in Springfield but that is a 4 hour drive away. Hoping for a closer Doc but I'm willing to travel if I need to.
If it is Lyme, I wonder what to expect since I would have had it for 10 years now. Anyone here diagnosed after 10 or so years and still recovered? Am I destined for life-log antibiotic use? I read some people have had IV antibiotics. When are they used to treat lyme?
I also beleive CFS (which all the doctors eventually hung on me) is just a term made up to label people when the Dr. can't figure out what is causing the fatigue.
PS: Any tips on how to eleaviate brain fog? Cool showers seem to be my only vice right now to help clear the fog.
Posts: 57 | From St. Peters, Mo | Registered: Apr 2005
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I was and still am concerned about the Lupus/Lyme issue. I had a high fever and malaise within weeks of a tick bite in the summertime. (nearly 3 years ago) My LLMD told me that any flu symptoms in the summer months should be considered highly suspicious for Lyme/coinfections.
Last August my PCP ran a slew of tests including ANA, Elisa+, negative Western Blot(Labcorp), CBC, Chem Profile. My ANA was borderline (still worries me on a daily basis), sed rate 3 (normal)All else normal.
My next visit was at the end of a ten day course of Augmentin for sinus infection. I was then tested for EBV and a repeat ANA.
EBV positive for active infection but resolving and ANA negative. I believe autoimmune? is triggered by a pathogen.
My Western Blot (recent from Igenex IGM equivocal and IGG positive) Head for a LLMD. If you treat for Lyme first, you're not risking as much as you would be by treating Lupus annd then find out it's Lyme. My $$, what's left, would bet on Lyme.
Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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When you take and antibiotic do you feel horrible a week to 10 days later? That is a herx and is a sure sign.
I am wondering can this happen with any antibiotic being taken for other reasons? I was taking an antibiotic for a "sinus infection." I should mention that I had a lot of facial numbness with this so called sinus infection. But the reality is, the numbness started before I got sick with the flu. I had a doctors appointment made for some strange things that were going on with me. I then got what appeared to be the flu. On April 7th the doctor treat me with antibiotis cause he said my flu symptoms had gone on beyond the normal lenght of time. I started taking the antibiotics on a Tuesday night. On Wednesday and Thursday the symptoms of the nasal congestion and facial numbness started to improve. I figured that indicated it was just a sinus infection (something I have never really had an issue with.) Then by Friday afternoon, the facial numbness had seemed to return with a vengence. I called the Doctor and went back last Tuesday. Could that original antibiotic cause a Herx reaction in your opinion or anybody elses opinion??
My Lyme test was negative,it was basic blood test. I know I was bit by a tick last summer. Jane
Posts: 20 | From Northwestern PA | Registered: Apr 2005
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quote:Originally posted by Neenny: Could that original antibiotic cause a Herx reaction in your opinion or anybody elses opinion??
My Lyme test was negative,it was basic blood test. I know I was bit by a tick last summer. Jane
Yes! Jane, you need to be evaluated by an LLMD ASAP!
The Lyme tests that drs usually run are very inadequate. You need a Western Blot done by Igenex, in my opinion. I am not a dr!
Tom, I had Lyme for more than 40 yrs before being diagnosed and I'm doing great! I recently got another tick bite, so I'm back on meds, but I know I'll beat this!
Look at it this way, Lupus "treatment" uses a band-aid approach, attempting to alleviate symptoms. It usually involves taking steroids.
If you have Lyme, the steroids will make the Lyme go deeper and you will have a very difficult time recovering.
With Lyme treatment, you are attacking the CAUSE, the spirochetes. There's no harm in trying that approach first.
A four hour drive is nothing compared to the alternative. Trust me, there's not a better doc in MO for Lyme treatment. You're lucky to be this close.
************************** More questions.... **************************
Does it make any sense that my symtoms are just about dibilitating from 1 hour AFTER I get out of bed until 4PM or so everyday and then they fade quite a bit from 4PM to 9PM? My brain fog always goes away (mostly) by about 4pm. (although the fatigue is still there)
It's almost like Sunlight/UV triggers the brain fog. At night I am generally still tired, but my head is clear and I can concentrate. Anyone with brain fog notice this?
Also... Anyone have any ideas how to cope with brain fog other than the cool shower trick that I use? It's almost like a slight shock to my nervous system by way of cool water on my head clears out the brain fog somewhat.. (reduces it I should say)
Let me thank everyone for all the help. Please keep reading this thread as I will have more questions as we go and I know other people are being helped as they read this as well. I'm not so religous but I must say God Bless everyone who helps out by replying to these messages.. I sure am greatful....
Posts: 57 | From St. Peters, Mo | Registered: Apr 2005
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quote:Originally posted by tom63376: Wow! I am overwhelmed by the info..
The more I read, the more I am confussed because the symtoms for Lupus and Lyme are almost identical.. How can I go about figuring out which one it is?
Tom, why not suggest to your doctor that he gives you a trial on antibiotics, in consultation with a Lyme-literate doctor (eg a member of ILADS (www.ilads.org)
If you have Lyme, a very characteristic reaction is a temporary worsening of symptoms early on, followed by an eventual improvement. the worsening is called the Herxheimer reaction and is believed to be due to the release of toxins by dying bacteria.
If this was a non-bacterial, auto-immune disorder (as lupus is considered to be), you would be unlikely to experience either that temporary worsening, or an improvement on antibiotics.
Be aware though that because you have been ill for so long, an improvement on antibiotics might not show immediately. You can find detailed information on Lyme treatment in Dr Burrascano's guidelines (published at www.ilads.org).
Best of luck, Lisa
ps In case you should have a positive ANA in future, it's worth knowing that this can occur in Lyme too.
posted
Just to reiterate what Lisa said: with Lyme, you can have a positive ANA and other autoimmune tests as well (anti-DNA, even skin biopsy). This has happened with three members of my family (including me), and we definitely have Lyme (very positive Western Blots).
I have a lot of sickness from sun exposure, and warm sun also feels like a scalding on my skin. I have been diagnosed with cutaneous lupus, and had a skin biopsy that was positive for autoimmune activity.
The thing is, "lupus" is a label for autoimmune activity of a certain kind. Research has shown that Lyme can trigger autoimmune activity in certain people with certain genetic characteristics.
In other words, Lyme and "lupus" aren't mutually exclusive. The question is, will Lyme treatment also treat the autoimmune disorder? Many LLMD's say yes, but some MD's think that the autoimmune problems will persist even if the bacteria are wiped out. This is the center of the whole Lyme controversy.
My daughter's very high ANA came down steadily with antibiotics, and all her autoimmune labs are now normal. On the other hand, I am still having problems with the sun after 4 years on antibiotics.
The good news is that in terms of treatment, it really doesn't matter. Many docs are now treating "lupus" with antibiotics. Plaquenil is a drug that is used for both. So using this plus an antibiotic means both possibilities are covered. Steroids are bad for Lyme, but rheumatologists don't always use them for lupus right away, so there isn't usually a conflict between diagnoses.
Of course, since your ANA is negative, lupus is highly unlikely anyway, but I did want you to know that labels aren't always the important thing. Lyme and lupus can sometimes just be one and the same illness.
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