posted
It all started with a sore throat and extreme tiredness more than 2 months ago. First I thought its just a severe cold, but everytime I felt better and left the house I relapsed so badly (sweating, heart beating, head feels hot) that I was worse than before.
Now since weeks Im unable to leave house, work and often even to take a shower or prepare food. Everytime I try to visit a doctor (by cab of course) I get worse because it weakens me again so much. I have been to the hospital � they didn�t find anything and told me of course it was all in my mind or cfs. Please help me to find out the reason!
My Main symptoms are:
- Extreme tiredness - Sore throat - Shortness of breath (even at rest) - I feel my heart beat so loud like i never did - Pain in fingers - Sudden extreme sweating (even at rest), stinks more than normal - Stuffed up nose - Head feels hot, but i have no fever
Side symptoms are:
- Twitching arms and legs - Light pain in chest - White coated tongue - Tooth pain (only a bit) - Brainfog - Pain in the armpits (only sometimes, glands not swollen) - Red dots on my stomach (only a bit)
Its remarkable that my lyme symptoms(neuropain) are now much milder than they used to be.
- Coxsackie virus (was between negative and positive) - An MRI showed that my heart doesn�t work good enough, but didn�t show myocarditis. electrocardiograms were also okay.
This stuff isn�t only lyme, is it? What should I get tested for?
Posts: 226 | From earth | Registered: Sep 2007
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posted
sounds like possible babesia is in your mix... the extreme tiredness and shortness of breathe. plus others. Do you have a llmd?
Posts: 303 | From green bay, wi | Registered: Mar 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Hi Steven, I am new to this and was only diagnosed 2 months ago after having all of the symptoms you mentioned above. I was so weak and bedridden for at least 2 months before moving from the bed to the couch. Anyways, I finally realized Lyme was probably the cause and saw a Lyme Literate doctor and she confirmed. Her Quest lab test showed nothing so I had to get Igenex and sure enough! I tested positive for Lyme but negative for co-infections (Babesia, Bartonella..) but probably have those too. I would not waste any time in finding a LLMD. I wish I could have known about this a year ago. Good Luck.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
By the way...you can Private Message me if you have any questions
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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lululymemom
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Member # 26405
posted
Sorry to hear that you are having to suffer like this. Are you on any meds? My daughter felt this way for 2 months and was also bedridden while on Doxy.. Everyone told her it was just a herx and to push through it. It was very hard to watch because she was so ill. Also abnormal EKGs..
Finally we got her to switch to Ceftin and she immediately saw improvement. She was able to function again. Sometimes the abx can cause more damage if it's not the right one for you.
Sorry you're struggling like this. I remember the months when taking a shower took everything I had in me for the day. Wow, that was last year and I'm almost back to normal. You WILL get better with correct treatment.
Do you have a good LLMD? I never tested positive for lyme, Bartonella or Babesia but I have all three.
IMHO, a good LLMD, ILADS trained, should treat w/out a positive test if symptoms point in that direction.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Thanks for all of your kind words and help.
Yes, I do have a llmd, actually i even have two. one local and one very good on the other side of the country. the latter suscepts the same as most of you do: babesia or bartonella. so i got tested again for both, though earlier tests were always negative. therefore this time i did a babesia-pcr.
but im pretty sure its none of both. since i have those throat-tiredness symptoms my wife also has the same sore throat and flu-stuff coming and going (though not as severe as i). the only way we could have infected each other is by mouth. but babesia and bartonella are not transmitted by mouth.
i am off abx at the moment and my llmd thinks its better to find out the infection first and then kill it. hope he is right.
i got also tested for mycoplasma and chlamydia, which can cause throat-symptoms. but since i have been tested for them a lot in the past i also dont think this is it.
so what is it then? what can cause chronic flu-like infections?
any ideas are appreciated.
jadams, what do you take and do you already feel better?
lululymemom, i also got extremely worse on doxy and dont think it was a herx.
17hens, so you just treated babs and bart without any positive test? since some abx have done real damage to my body im a bit relunctant to do this.
Posts: 226 | From earth | Registered: Sep 2007
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quote:they didn�t find anything and told me of course it was all in my mind or cfs.
Even though I don't know you, I would never agree it could be "all in your head". Never listen to ER people when they say this. They are nearly all morons who participate in group think, and I feel strongly about that statement. They only know how to see things that are acute, and they are blinded otherwise. It really could be CFS (such a stupid name for a really terrible disease). Chronic Lyme and CFS have the same symptoms.
quote:On a clinical basis, "chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished from chronic Lyme Disease.
FYI: I have both CFS and Lyme, however, I believe a tick bite was the CFS trigger. However, this has not been studied and CFS is listed as a diagnosis of exclusion, which is just plain wrong in my opinion. There are biomarkers for CFS and those who tell you otherwise are gullible. You would need to see a CFS specialist for proper testing.
Keep in mind, CFS can cause immunodeficiency and increased susceptibility to chronic bacterial and viral infections. Bacterial and viral infections may be able to reactivate. Having CFS does not mean there are no need for antibiotics. In fact there are studies (though only a couple) that demonstrate improvement with long-term antibiotic therapy.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
steven,
Yes, I did. I knew I had Bart - terrible foot pain for a year, 6 months of plantar fasciitis. With treatment is slowly went away and I can walk pain free now, even in my bare feet!! (I'm so happy about that!)
I treated Bart for 8 months and got symptoms drastically reduced but could never get beyond a certain point.
I started keeping a diary and noticed a few very slight symptoms that could have been Babesia. Then I noticed a 5-6 day cycle in symptoms.
I started treating for Babesia AND Bart and voila - almost back to full health now!
My LLMD has most patients do Igenex testing, but never required it of us. Maybe because all 4 in my family had ticks and rashes and obvious symptoms? Maybe because in treating 4 people, there's not much money left? I don't know.
I just know that it makes sense to me - why base diagnosis on an unreliable test when you have symptoms staring you in the face?
But in reading my above post, I guess I shouldn't say, "A good LLMD will do this and that." There are plenty of good ones who do that and this. I should restate to say, "My LLMD is good and he did this."
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Steven--I treated on Doxy for one month and now on Azithromycin for a month so far. My LLMD thinks I only have Lyme but is starting to treat me for Bart with Bactrim. I really think my big problem is Babs though as I have a lot of those symptoms vs. the anxiety symptom which is common with Bart (i think). Anyway I feel a little better since starting Doxy (about 20% better). But not on meds long enought to tell yet.
17Hens--what meds were you on to treat Babs and Bart at the same time?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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but i dont believe in a disease called cfs. to me its just a word to label sick people (like fibromyalgia) for doctors who are too lazy to look for rare and hard to find diseases. i dont wanna know how many people with cfs-diagnosis just have an undiagnosed infection with heart involvement or an hard to find infection like lyme.
Posts: 226 | From earth | Registered: Sep 2007
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posted
Dont waist your time on testing your heart is going to be demeged badly and this can kill you it allmost killed me .
Take OLE ,oregano oil,monolaurin (lauricidin) for viruses.
Take strong antibiotics like ceftriaxone Iv(if you cant take this take doxycycline 300-400mg tbl a day) , azithromycin 500mg tbl a day ,and flagyl 250mg a day.
Your immunity is so low from infection with lyme and Coinfection so if you dont do something viruses will kill you.
Take probiotics with 100billion of organisms,take B-complex,vit C,D-riboze10 -50 gr a day,magnesium 600mg a day,whey protein,multivitamin with multiminerals ,phosphatydylcholine .
All this you need to get out of the hole your body is devoid nutrients and immunity you have to act fast.
Take jodine to to help your thyroid.
Yes you have Lyme and babesia and bart and much more .
All my tests are negative to, they dont mean nothing when immunity is low is hart t o get pozitive test. I was there almost same symptoms with yours and will not let ever anybody play with my life . Take care
Posts: 482 | From Nebraska | Registered: Feb 2010
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17hens
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Member # 23747
posted
@ jadams - I take Mepron, Zith, Bactrim right now.
When I'm done with Babesia (mepron) I'll change back to Rifampin which was great for my Bartonella and sweep up the rest of it.
That's the plan anyway. With this stuff you never know what's around the corner...
(sorry, not feeling too optimistic right now - DD having liver problems and I'm way overwhelmed.)
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
They can kill you in minutes dont play with them . Number one virus that damages heart is Coxacie B virus.
I'm 100% sure that fatigue tirednes and other symptoms in you are from them and chlamydia.
Remember lyme opens the dor to the bugsinside and outside of our body.
I have ben there with major organ demage was lucky they did not kill me and more lacky after a year of agresive treatment my all organs are back to normal.
Just have couple symptoms left in gjeneral that don't efect my everyday life but I want them gone ASAP.
Posts: 482 | From Nebraska | Registered: Feb 2010
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seekhelp
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Member # 15067
posted
Coxsackie is treatable, but regular docs seem clueless. PM Timaca here. She knows a lot.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
It sounds like you contracted something else, which is why your Lyme symptoms are taking a backseat. Your immune system can only deal with one primary thing at at time, so while it's off fighting one infection, the others (previous ones) get to run their course without many symptom (becuase your immune system can't be bothered with them when something else more recent and dangerous pops up--priorities!)
If you tested positive for C. pneumonia and Coxsackie, and your wife has same symptoms but milder, that sounds like what the problem is... You know?
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
Call ARUP to see which lab in your area will draw and send to them. Focus is owned by Quest, so work with your local Quest Lab to get the blood to Focus. Your doctor needs to order that these tests go to these labs.
I've used oxymatrine (a Chinese herb) to treat my Coxsackie B and it has helped. A new product is out that Dr. Chia developed (his son had an EV infection, so he got interested in the field. Google search Chia enterovirus and you'll find some info to read). His product is Equilibrant: http://www.equilibranthealth.com/
Coxsackie B affects my heart by putting me into tachycardia. The heart structure is fine, my EKG is fine (except when I'm in tachycardia) and my echo is fine. So the virus has not affected the heart tissue (and I hope it doesn't). I do have palpitations, pounding heart, tachycardia etc which are rhythm abnormalities....but that is all (and that is enough). I don't understand how an MRI can show that your heart has been affected, while your EKG and echo are fine....? I didn't know MRIs were used to look for heart problems (my cardiologist has never sent me for an MRI and I've been in his office a lot!)
I think your doctor is wise to try to find the answer....good luck.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thank you for your very valueable information, Timaca and others.
I have read about Dr Chia and already taken oxymatrine into account, but am a bit relunctant because I also read it had toxic effects in animal studies (K.-C. Huang, The Pharmacology of Chinese Herbs, 1993). But since it seems to have helped you it cant be that toxic!
I also read about rare cases in which Interferon was successfully used against coxsackie-infections. I think Chia also used it for his son, but he relapsed after he discontinued it. Its probably too expensive and hard to get anyway.
What confuses me about the positive Chlamydia result is that i have taken highdose antibiotic combinations against lyme for years - and most of those abx (zithro, mino, flagyl) are also supposed to kill chlamydia (btw they didnt even reduce my lyme symptoms in the last time). and if these abx havent killed chlamdydia the last years why should they now?
If Coxsackie is the bigger problem in my body than Chlamydia then an antibiotic could even do damage. The more i read about chlamydia the more I am surprised that it is as complex as lyme is.
One infectious disease doctor I just talked to on the phone told me he tested me negative for coxiella, brucella and bartonella - so now I know nearly a million infectious disease which I dont have. He said he recommends to just wait so that the body can fight on its own.
Posts: 226 | From earth | Registered: Sep 2007
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timaca
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Member # 6911
posted
Hi Steven~ Some people are of the opinion that you should give the body time to heal itself as your ID doctor said. It can take time to recover from something like mono or another viral infection. I think for a CFS diagnosis, you have to have been sick for over 6 months.
Your most recent illness has been just over 2 months long, so you may pull out of it in time. But it also says in your signature that you've been sick since 2001. So, I guess you have to decide what is worth pursuing or not as far as your illness goes. Do you try to treat your most recent illness or wait to see if your body will heal itself? Do you try to figure out why you've been sick since 2001? Only you can decide.
You might consider getting the Coxsackie B and echovirus test run at ARUP. If that is high, perhaps a visit to Dr. Chia is in order, or a trial of oxymatrine (with a doctor's OK).
One of my ID doctors thinks that Cpn can have cross reactive antibodies to other pathogens, and when those pathogens are treated, the antibody titers to Cpn drop too.
That may have happened in a friend of mine, as she treated EBV. Focus is a good lab for testing for Cpn, so you might consider that.
You mention "They didn't even reduce my lyme symptoms".... Just so you know, you cannot differentiate lyme symptoms from other chronic viral pathogens....the symptoms can be the same (except for a bulls eye rash which is diagnostic for lyme disease).
Hope this helps, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Timaca, you mention that your infectious disease doctor thinks that Chlamydia pn can have cross reactive antibodies to other pathogens. Thats interesting. My infectious disease said absolutely the same. I didnt believe him then, but when your doc says the same then it might be true. It shows again how difficult interpretation of labtests is.
Of course I try to figure out why Iv've been sick for ten years now. When you see the list of my tests from the last months you can imagine what I have been tested for in the last ten years! But regarding symptoms, labtests and getting better on rocephin the only thing that made sense to me then was lyme - until abx didnt seem to work anymore and I got this flu-like-tiredness-stuff. And even here I cant be sure whats from lyme and whats not.
When I look back how my tiredness and headsymptoms were increasing I suspect that flagyl/tini played a role. I got so much worse since I started taking it. Maybe it contributed to activate a virus.
How are you doing these days? What else than oxymatrine helped you to get better?
Posts: 226 | From earth | Registered: Sep 2007
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timaca
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posted
Hi Steven~ Cpn is interesting. I have had IgG and IgA antibody titers as high as Focus lab measures. Since the IgA are high and I have significant issues when given antibiotics, I am leaning towards thinking that I have a chronic bacterial infection, likely Cpn.
I have a friend who also had high antibody titers to EBV and Cpn. She used artesunate and valcyte and her antibody titers dropped for EBV and Cpn, which makes me think her Cpn antibody titers were cross reacting somehow with EBV. She had been on a year of antibiotics to treat Cpn and her antibody titers didn't budge. I will be interested to see what her titers say next time she draws them.
Valcyte has helped me. Antibiotics have helped. My story is detailed on the HHV-6 patients forum if you care to read a detailed account.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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