posted
i,ve been sick for six months. I feel completely drugged within 30 mins of getting up and it's with me all day. I only list this symptom as it's the worst one and prevents me from working and playing. i've been to many drs and had many tests was told i had eb virus. Does anyone else have this symptom?
Posts: 137 | From New england | Registered: Aug 2012
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I recommend having saliva testing done to check your adrenal function. My doctor uses Aeron Lab http://www.aeron.com/
Have you had your thyroid function, including antibody tests, checked recently?
Posts: 4681 | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see you are new here. Welcome, but sorry for the reason you seek answers and that your previous doctors don't have what it takes to help you.
Sammi is correct adrenal function can be the cause. Or (as you suspect) it may be that lyme is the main culprit and if so, since lyme clobbers adrenal function, adrenal support can help.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.
See TIMACA's link here - and find the detail and sites she has posted about chronic EBV and other "stealth" viruses.
Infected ticks can carry lots of different infections - and those infections can also cause dormant infections to become active. This happens a lot with EBV for those with lyme.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
seven rounds of bloodwork, 5 ologists, 12 tests. the only thing that has not had a scan,x-ray,mri,ultra-sound,eeg,echo are my legs.1st round off blood work showed past exposure to babesia and ehurich (spelling?)id said it's eb and will take time. tis been six months
Posts: 137 | From New england | Registered: Aug 2012
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posted
been this way for 2 years 7 months non stop hate it , but i have not treated either, my llmd says its parasites???
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
[QUOTE]Originally posted by munchin: ".1st round off blood work showed past exposure to babesia and ehurich (spelling?)."
Hmmm, I wonder about that statement. Have you treated Babesiosis and Ehrlichiosis before? Why is the doctor saying these are past infections?
Please know that infectious disease doctors are typically the worst to see for tick-borne diseases.
Posts: 4681 | Registered: Oct 2000
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posted
the drs have said "past exposure" not an active infection and no i have not been treated. Some have suggested anti depressants. I am not depressed i'm sick.
Posts: 137 | From New england | Registered: Aug 2012
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quote:Originally posted by Sammi: [QUOTE]Originally posted by munchin: ".1st round off blood work showed past exposure to babesia and ehurich (spelling?)."
Hmmm, I wonder about that statement. Have you treated Babesiosis and Ehrlichiosis before? Why is the doctor saying these are past infections?
Please know that infectious disease doctors are typically the worst to see for tick-borne diseases.
Get a copy of your babesia and Lyme tests ASAP!!! ID drs don't even know how to read them!!!
UNTREATED ehrlichia and babesiosis can kill you. Babesia causes terrible fatigue.
From the above link:
"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."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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posted
i'd probably be dead by now. the only copy i have now is is lyme w. blot 0.42 other drs have seen results and don't seem to be concerned
Posts: 137 | From New england | Registered: Aug 2012
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posted
how about lyme test w/reflex to w blot 0.42 that's what i'm reading igg=776
Posts: 137 | From New england | Registered: Aug 2012
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I highly recommend that you see a Lyme knoweldgeagle doctor as soon as possible. By the way, many people who have Lyme have highly positive viral counts including EB.
You can post in "Seeking A Doctor" to get names of good doctors closest to you.
Posts: 4681 | Registered: Oct 2000
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quote:Originally posted by munchin: the drs have said "past exposure" not an active infection and no i have not been treated. Some have suggested anti depressants. I am not depressed i'm sick.
It won't be long til they suggest seeing a psychiatrist to talk about your childhood. That should help cure your lyme disease! LOL! As you'll read on the forum, this is a typical response for doctors when they don't know what else to say. It must be stress. You need anti-depressants. Blah, blah, blah. IMO, regular MD's are only good for diagnosing the most obvious conditions - like a broken arm (if the bone's sticking out). Anything else - well...
Posts: 177 | From Ohio | Registered: Aug 2012
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posted
yes... i saw a nuro doc yesterday who is sending me for tests that she claims to know will be neg. She wanted to refer me to a psychiatrist. I simply said no thank-you
Posts: 137 | From New england | Registered: Aug 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Usually, just before the "see a shrink" dictate, one is told to "get a life - start a hobby" -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Lymetoo: Warning... neuro tests are VERY expensive. Why bother?
Thanks, Sammi, for mentioning EBV and Lyme. I meant to do that. (sigh)
Definitely post in Seeking a Doctor. It takes months to get in to a good one.
i need to rule out a brain tumor right. After all my main symptom is in my head
Posts: 137 | From New england | Registered: Aug 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Be sure to get copies of all the tests you have had of any kind while you have had these health problems. Keep your own file of them. They will be important in ruling out other conditions when you get to a doctor that knows infectious diseases better than the ones you went to. You don't want to have to repeat all that stuff.
IMO, don't do any more testing with docs who don't know tickborne diseases. If you need more, a lyme doc can order them and will.
Posts: 2888 | From USA | Registered: Mar 2004
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quote:Originally posted by munchin: yes... i saw a nuro doc yesterday who is sending me for tests that she claims to know will be neg. She wanted to refer me to a psychiatrist. I simply said no thank-you
Isn't it unbelievable how arrogant doctors are? They can't figure out what's wrong with you so they assume YOU need to see a shrink!!! Maybe they should go back to school.
Posts: 177 | From Ohio | Registered: Aug 2012
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posted
Before I was finally diagnosed with Lyme more than 10 years ago, I saw a "well respected" neurologist who looked me in the eye and said that my 10 symptoms were probably caused by 10 different problems. IDIOT! That was the last time I saw that guy.
How could someone that is supposed to be so highly educated be so stupid?
Posts: 177 | From Ohio | Registered: Aug 2012
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posted
it's just so frustrating am i just looking at lyme because all else has failed? Like i said i only have one main symptom. After 30mins of waking it's like i've been drugged. It's with me all day every day no matter what i do or don't do.No work or play for the past two months. You all have alot more going on than i do.
Posts: 137 | From New england | Registered: Aug 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Well, we don't know that you have lyme. A lyme doctor will consider other possibilities, do what is called a differential diagnosis. But you have already been doing that with other doctors and come up with only this epstein barr virus. How is that being treated? The guys doing the diagnosing so far are not considering lyme and other tickborne diseases adequately.
The thing that is suspicious is that "old" infection with ehrlichia and babesia. How was that determined?
[ 09-01-2012, 10:23 AM: Message edited by: poppy ]
Posts: 2888 | From USA | Registered: Mar 2004
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posted
with the help of this site a dr has been suggested . I'll call for an appt. Now will this dr think i'm nuts too. It makes ya shy away from telling them your issues. The second they mention it could be stress i'm defensive and it's all down hill from there bla bla
Posts: 137 | From New england | Registered: Aug 2012
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posted
OMG, get thee to a LLMD, do an antibiotic trial, but work on the LIVER first, major part in fatigue and brain fog, by the way EB loves the liver and u gotta fight that too. EB is cross reactive with LD tests, sometimes with LD treatment the EB no longer reacts and be negative. Stupid mainstream Drs!!!!
Posts: 532 | From Texas | Registered: Oct 2004
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quote:Originally posted by dal123: OMG, get thee to a LLMD, do an antibiotic trial, but work on the LIVER first, major part in fatigue and brain fog, by the way EB loves the liver and u gotta fight that too. EB is cross reactive with LD tests, sometimes with LD treatment the EB no longer reacts and be negative. Stupid mainstream Drs!!!!
work on the liver 1st?? When thi started i was put on amox fo 21 days 15 days into it another dr took me off it and onto prednisone for a week,that actually made me feel much better and i went back to work for a month. It came back i begged to be put back on dr agreed to lower dose which helped this time only for a few days. My pcp is willing to put me on a low dose to get me back to work.
Posts: 137 | From New england | Registered: Aug 2012
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posted
Don't take that so literally. It may takes weeks or months for an LLMD appointment. So in the meantime you can look for supplements to help clear the liver.
DO NOT take anymore steroids!! It will make the lyme go deeper and possibly skew test results.
It can also make the lyme symptoms worse. You haven't had that reaction YET, but it can still happen.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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quote:Originally posted by munchin: with the help of this site a dr has been suggested . I'll call for an appt. Now will this dr think i'm nuts too. It makes ya shy away from telling them your issues. The second they mention it could be stress i'm defensive and it's all down hill from there bla bla
I am seeing an ILADS LLMD that was referred by someone on this site. She is a MD, a Naturopath, and has Lyme disease herself. It was like a breath of fresh air talking to her and NO - she didn't suggest that my symptoms were CRAZY - she had the same symptoms herself!!!!
Do WHATEVER IT TAKES to find the right Lyme Doctor. I think that it will make ALL THE DIFFERENCE!
Posts: 177 | From Ohio | Registered: Aug 2012
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Why don't you think it is lyme?
"Past exposure" to babesia and erlichia. Did you ever treat these diseases? Then you still have them along with lyme.
Incidentally your story is nearly identical to mine. My worst symptom was a drugged / drunk feeling. I was nearly disabled. 9 doctors told me nothing was wrong. I was told to go to a psychiatrist and go on prozac.
My first lyme test was negative too.
After 4 months of LYME treatment this symptom was gone. I am 90% back to my old self today.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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quote:Originally posted by bcb1200: Why don't you think it is lyme?
"Past exposure" to babesia and erlichia. Did you ever treat these diseases? Then you still have them along with lyme.
Incidentally your story is nearly identical to mine. My worst symptom was a drugged / drunk feeling. I was nearly disabled. 9 doctors told me nothing was wrong. I was told to go to a psychiatrist and go on prozac.
My first lyme test was negative too.
After 4 months of LYME treatment this symptom was gone. I am 90% back to my old self today.
i don't think it's lyme because the zillion dr's i've seen said my lyme tests all eight were neg.Can you tell me about your worst symptom and how it affected you
Posts: 137 | From New england | Registered: Aug 2012
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You can call them and ask for a test kit and then take it to your dr to have him sign the form. Then get the blood drawn.
Do it early in the week.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
It seems like you are not really ready to consider lyme and other tickborne diseases. You can keep on getting tests like you have in the past and like you are proposing...that is a possibility. If you have lyme, it will not be diagnosed that way by doctors who don't specialize in tickborne diseases.
So, one way to look at it is that lyme and the coinfections are just one more thing to rule out so you can move on in another direction.
Please don't take anymore steroids if you want a better chance of treating an infection, any infection.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
i do consider lyme.However everyone else has alot more symptoms than i do.I'm feeling pretty gun shy right now as I was told yesterday at nuro's office that I needed a shrink.
Posts: 137 | From New england | Registered: Aug 2012
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I don't pretend to know what you have and I don't claim to be nearly as knowledgeable as many others on this forum. However, as someone who has who has seen MANY doctors before finally finding a Lyme doctor, I can tell you for a fact that it's quite typical for doctors to bring up stress; depression; or suggest a shrink when they don't know what THEY are doing. They must take a class on blaming the patient in medical school. A huge percentage of people with Lyme disease, MS, Lupus, and other hard-to-diagnose diseases have been through this same frustration.
Only you know whether you are mentally healthy or not. If you are, and the doctors are simply pulling their typical "blame the patient" game, then fire your doctor and keep looking until you find one that actually will work to find your medical problem. Remember, the doctor WORKS FOR YOU! If they're not doing the job - FIRE THEM!
Posts: 177 | From Ohio | Registered: Aug 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Well munchin, good luck. Hope you find some help for whatever you have. We don't want to talk anyone into a diagnosis.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some explanations here about how most regular doctors (and even "regular" specialists) think of those they declare only in need of a psychiatrist instead of comprehensive medical assessment & care.
You have likely been declared a "difficult patient"
- explores the neurological and toxic ways that lyme and other tick-borne infections can affect emotions, thoughts and behavior - and psyche.
While therapy and mood support can be very important (only from those doctors who are lyme literate), attention to the cause - infection - is absolutely vital to success. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Munchin -
My Mom had 3 neurologists tell her she had "anxiety" and needed counseling! It took us 15 years before the 4th finally did a spinal tap (not really recommended) but FOUND LYME in her cerebrospinal fluid!
Do NOT Trust mainstream docs! Their 1st line tests are garbage (the ELISA has a 50/60% FALSE NEGATIVE), and many ID docs cannot interpret signs of Lyme in the Western Blot!
CASE IN POINT: Your "past exposure" to babesia and erhlichia! WTF?? A MAJOR symptom of Babesia is exhaustion! Babesia is similar to MALARIA!
If I were you I'd be ordering a supply of cryptolepis (an African herb used for Malaria)! If you start "herxing" you will know the infection is ACTIVE!
HERE is an excellent post on wikipedia, see if you find any of yourself in this:
Also, you can pump up your immune system with vitamin supplements, anti-inflammatory herbs (like curcumin/tumeric), and start taking fish oil and/or Cod Liver Oil. Ignore these illiterate docs until you can see a GOOD LLMD!
Your body is telling you something is definitely wrong! Just because you haven't found a doc that can diagnose it, doesn't mean you're NOT Sick!
I wish you only the best!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
After I was diagnosed, I looked over these lists and realized I had a lot of symptoms I was just ignoring. I thought many of them were insignificant. (wrong)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"DO NOT take anymore steroids!!"
Agreed.
Not only does it interfere with getting rid of the infection it causes a host of other problems.
Steroids caused me permanent eye damage. You don't think it will do this and then one day you wake up and you can't see correctly. I had perfect vision before this.
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
you all have been very helpful. I will see llnp that was suggested by this site. I have not been on steroids for over a month nor will i take them to "get back to work " as suggested by one doc. This has been such a lonely road.. Again, thanks for all your support
Posts: 137 | From New england | Registered: Aug 2012
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