heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i'm posting this question for (or about) a friend of mine, out of curiosity and also because i care for her very much.
this particular friend is very ill, has been getting sicker over the last year and is now mostly bedbound.
here is a complete list of her symptoms:
- overwhelming fatigue and malaise - excessive sleeping (11-17 hours/day) - occasional insomnia/disturbed sleep-wake schedule - burning, tearing, tense muscle ache (similar to extreme post-workout soreness) constantly in all muscles of body - progressive muscle weakness (unable to sit up for more than 60-90 minutes, difficult to grasp paper) - tenderness to touch/pressure (i.e., taking a pulse hurts) - twitching/trembling/shakes in muscles - intensely painful muscle cramps, usually in legs, feet, and shoulders/neck (at least 1/day) - nerve pain (pinching, tingling, numb, or electrocution-like pain) in arms/hands and legs constantly - hyperreflexia - mild/moderate joint pain (mostly in fingers/wrists, sometimes in hips, elbows, knees, ankles) - difficulty concentrating, worsening memory, worsening confusion - frequent clumsiness/dropping things - frequent low fevers - unstable perception of temperature (waves of heat or cold) - sudden sweats; night/early morning sweats - skin hypersensitivity/pain - sudden "flashes" of nausea, dizziness, sweating, flushing - frequent common infections (colds, flus, earaches, yeast infections, fungal infections of the skin and nails, 2-4/month) - worsening, severe environmental and food allergies - six new severe (anaphylactic) food allergies in last year - frequent pruritus, especially in legs - mild, persistent sore throat since april 2007 - interstitial cystitis - irritable bowel syndrome - unusually high resting heart rate (100-120 beats/minute; previously 70-85) - variable blood pressure (115/75 to 145/90) - regular sinus headaches (2-20/month) - frequent nosebleeds (1-8/month) - poor circulation to extremities - mild fingernail pitting - slow wound healing - weight gain
i'm sure these look familiar to many of us. anyway, she is seeing a highly recommended LLMD (dr. S in/near baltimore), who believes she's infected with babs and bart, but not lyme. ALL her tests (for lyme, babs, and bart) have come back negative (all from igenex and MDL, i believe), so dr. S has just started her on a trial run of meds for babesia and bartonella (can't recall the meds at the moment).
i do trust that this particular doc knows what he's doing, as i've heard lots of great things about him, but.. i don't think i've ever heard of someone having babs and bart without lyme.
she's been trying to figure out what's wrong with her for a LONG time, and she finally feels comfortable with this doc, and his tentative (for now, given the negative tests i guess) diagnosis and treatment.
He is my doctor. He said he thinks lyme may or may not be the main problem with me. he thinks the bart and babs are the main culprits.
He is not saying I do not have lyme, but that the lyme is probably not the main thing making me this sick right now.
after I finish treating the bart and babs, I may or may not need aggressive tx for the lyme, depending on how I feel.
If I am completely better, then I can just stay on doxy. If there are still a lot of symptoms then I wil do IV for the lyme, but he doesn't think that will be the case.
but he won't know for sure until I treat the co-infections, since those symptoms are so severe.
I am on doxy, rifampin and zithro. next I will be on mepron and i think still doxy and something else.
Posts: 615 | From maryland | Registered: Oct 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
roro, yes, as far as i know, she has told me that dr. s doesn't think she has lyme.
carol, i have no idea. i am curious about this too. after all, he did diagnose bart and babs clinically. i will ask her asap.
SForsgren
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Member # 7686
posted
I'd be looking for energetic testing via ART, EAV, or the like to see if Lyme appears. I would also do a CD57 and if that is low, then that is another indicator. I think its unlikely that Borrelia is absent.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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heiwalove
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Member # 6467
posted
scott, i agree, but i don't think she has the funds to see an ART/energy testing practitioner in addition to her LLMD. plus she is unable to travel very far at all, so whatever practitioner she sees needs to be right in the baltimore area.
if you have any suggestions for practitioners in baltimore, though, i'm all ears.
posted
I have experienced everyone of these symptons over the past year except for three i haven't experienced nosebleeds, allergies and fingernail pitting. I too tested negative for the same
tests. But i did test positive for an active rocky mountain spotted fever infection. Our symptons are so dead on it's scary. I'm not trying to frighten you but you need to get her
tested for that right away because it's very serious and 20 to 30 percent of people will die without treatment. theres not alot of information on internet about the untreated long term symptons of RMSF. But i can tell you from
my experience i didn't have the classic rash and i went four years before i started to get really sick.
Posts: 37 | From Ohio | Registered: May 2007
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heiwalove
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posted
wow. thanks spotted rocky. i will definitely bring that up to her.
i know nothing about RMSF. do most LLMDs know how to treat it? where and how do you get tested for it?
and are you under treatment for lyme/babs/bart as well, despite the negative tests?
posted
Yeah I imagine most LLMD's know how to treat it. I've been on doxycycline for five months know and still having alot of problems. I'm going to an LLMD too an he clinically diagnose me with
lyme even though i tested neg for it a couple times. I try to keep an open mind about what is really screwing me up but i do know my immune system crashed. MY EBV and CMV viruses were
extremely high along with a pertusis virus and 5 strains of the coxsackie B virus and a high M. pheumonia infection. so it's probably a combo of things causeing all these symptons. I wouln't be surprised if your friend has some of these viruses also.
Posts: 37 | From Ohio | Registered: May 2007
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posted
I went to a regular family doctor to get tested for it. I think labcorp was the labatory my doctors office used.
Posts: 37 | From Ohio | Registered: May 2007
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posted
Dr S is my doctor too..he also felt bart is a bigger problem then lyme for me. However, you are suppose to treat co-infections first..so any remaining symptoms could be lyme. Many of the meds for bart hit lyme.
I'm on bactrim/zith-good for bart and lyme.
Posts: 561 | From eastcoast | Registered: Aug 2006
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heiwalove
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posted
This sounds a lot like CFIDS and MCS. That's so interesting about the Rocky Mountain Spotted Fever. I'm curious where you were infected with that? (what state?).
The extreme muscle weakness could point to another condition as well. I think it's really important that your friend find a good neurologist too.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Michelle M
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Member # 7200
posted
Heiwalove, I really like your signature. It's so nice of you to be so concerned for your friend.
Well, I wouldn't want to second-guess her doctor, of course.
However, THAT being said...
The chances of an evil tick delivering a couple of nasty co-infections and somehow withholding borrelia burgdorferi seem EXTREMELY unlikely to me.
On the other hand, the chances of your friend -- who's very ill and whose immune system is totally WIPED by these illnesses - the chances of her being seronegative for lyme seem EXTREMELY HIGH to me.
And statistically, we know that even among people who aren't dealing with two debilitating coinfections, seronegativity can run as high as 30% or so. This has been proven in studies.
So why her LLMD thinks her seronegativity means anything at all is pretty baffling to me.
I agree with the advice above that she should have a full viral panel, including RMSF, which is a great suggestion. At the very least, an MRI, and possibly a lumbar puncture (yeah, go ahead and slap me now). (And no, not to "prove" her lyme, of course, but to rule out more ominous causes.)
Scott's idea of a CD57 is excellent as well.
Good luck in helping your friend. I hope she sees some progress.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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kelmo
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Member # 8797
posted
My daughter has a lot of those symptoms and she has only tested pos for bart and babs. I don't doubt there is Lyme in there somewhere, it just hasn't come to the surface.
Same for me!
We think our infection came from mosquitoes, so that may be the reason no Lyme.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
thanks so much for all the responses everyone.
kelmo, that's so interesting. and actually, she just told me that she DID have a CD57 done, and it was completely normal. part of the reason why her doc suspects bart and babs but not lyme.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
We have a local doctor who quite frequently diagnoses people with Things That Are Not Lyme but then in his treatment of those things he ends up treating suspiciously as if he is treating for Lyme... But it keeps him off the radar of peopple looking for lYme doctors!!!! AND makes insurance companies cover the care more easily-!!! I wonder if her doctor is doing htat!!!
He will diagnose Bartonella, babs, Ehr or "Unknown Bacterial Infection Responsive to Abx!!" (seriously!!!!!!!!!!!!!!!!!!!!!!) but rarely, RARELY, Lyme!!!!!!!!!!!!!
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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heiwalove
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up again just in case anyone has any more ideas
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