Topic: Consolidated list of Babesia Symptoms - compare / contrast
BoxerMom
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posted
I have a B.duncani Lyme friend who sweats a lake every day and night. She is absolutely drenched.
She has been exposed multiple times on the West coast, and only tests positive for B.duncani (not microti).
I have B.microti and sweat very little.
My worst insomnia was due to Babesia. It was when I started treating Babs that I could sleep again.
I'm not trying to be argumentative, but I don't know if it makes sense to say any infection can't cause a particular symptom, though I know doctors like to do this.
It's misleading for patients when they either have or do not have what is considered a hallmark symptom of a particular infection.
That's why I like this thread. It's comprehensive. You don't have to have every symptom, and symptoms can change during treatment, as mine have.
LymeCFIDSMCS - I hear you on the floaty brain and epic exhaustion. I still get those when I herx for Babs. I can't do anything but lie on the couch and stare. It's unreal.
nonna05
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OK ! Does Ozone really feed/flare Babs??? What is the abx for babs,,,,,
All of the above sx and then some,,,,,,
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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Well try again,,I am not doing well at all...This new heavy duty tingle/jitter/numbness is doing a number on me...
What will calm this down?/
I know I've seen post recently on this ..
I try search and it just sits there /gives back no info
What else treats babs ,mepron, a-bab,,omni??
I have had several drops in the past ,but told to take, not which ones hit Babs..
I'm jumping out of my skin.
So tired of sporadic sleep, sleep aids aren't helping /kinda reverse. Then I end up in a fetal position during day trying to sleep or just knocked out.
I seem to have an issue with L-tryptophan in 5-HTP, or Kavanace pm or soothe and relax// and now I guess trazadone.....
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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probably should have started different thread .It's just that so much of what i'm going through is on this .
I had some small or lasser version of this ..after a few months ,lot's of sx went away or down,, something just kicked this into high gear.
Lord I just want to sleep at night for several hours and get up able to brush teeth clean-up /bath and start a day it's just been forever.. and now feel like my insides want to crawl out side.. Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
has anyone tried A-Bab for babe? (I'm one year into treatment and have been struggling tough. lyme, bart, babe. ?) (possibly for 31 yrs...tried to read face of llmd....not sure what i saw and try not to think about it)
llmd put me on a few drops of A-Bab for babe two weeks ago. Caused a head/neck ache, that took my attention away from everything else in my body and the world. Haven't been well since.
He stopped meds and has me going slowly. Taking one doxy a day. moderate herx happening. Really scared. Read earlier post....of doxy attacking spiro of lyme....
Does doxy address babe and lyme or just the spirochette of the lyme? Today feels like the flu...classic lyme....not babe, correct?
And, I need a lyme literate counselor...Find that my "inner witness" is aware during the emotional havoc, but it has no influence on my words/actions. Then when the rukus calms, I'm appalled at myself. It's not helping my recovery.
If I should have posted new thread, I apologize. I read more than I post. Thanks very much, this is a very lonely and scary disease for me
Posts: 9 | From Anytown, usa, closer to NE states | Registered: Oct 2011
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nonna05
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posted
helpers//// please
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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BoxerMom
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I need advice. I have many of the Babesia symptoms listed above. Except no-night sweats.
I have tested HIGH positive 1:1024 for Babesia Duncani through Labcorp. My LLMD says he still doesn't believe it is really a positive for Babesia but it is instead probably a just cross reactivity to the Fry Bug and that I only have the Fry Bug and not Babesia. I guess that could be true.
I have been treating Lyme and Bart for 2 1/2 years. I am worried because my stiff neck and assorted (maybe)Babs symptoms come and go and I have never treated. I am also worried to push for treatment in case I wake a sleeping giant (the BABS Giant) and I will go down hill again.
Could it really be just a cross reaction? Should I just ignore the test result and not treat? Will I ever get fully better if I don't treat?
This stuff is all so confusing and scary.
I also kinda wonder why did he have me even take the test in the first place if he wasn't going to believe the results? Weird
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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Marnie
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The various pathogens can have identical proteins/parts of a protein which we react to.
One of the greatest challenges to vaccine development comes from pathogens that mutate their surface antigens (proteins) very rapidly. In many cases, the areas that mutate are those on exposed loops of external proteins.
And Bb is a quick change artist for sure!
Our response, our antibody to Bb's OspB (outer surface protein, B) is not "healthy". Years ago, it was found that Mg restored the health of that antibody to Bb's OspB.
If our body only recognizes OspA (and Bb "hides" OspB), we maybe in trouble.
We made the mistake of basing the lyme vaccine on OspA only.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Actually, I think if your opinion and that of my doctor are correct and it is the Fry Bug cross reacting and not Babesia then Yippee. So thanks for the info.
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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BoxerMom
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my night (and day) sweats are usually accompanied by sudden fluctuations in temperature. one minute my temperature is 100.7, a minute later 98.2, then a few minutes later 99.9. all the while, i feel as though i have a very high fever (although it is never truly high); tremendous sweating (esp. facial) and sudden body aches and extreme exhaustion. i also often have sever sweating while eating or just after eating. does anyone else experience this? babesia? your thoughts are appreciated... thank you,
Posts: 43 | From new jersey | Registered: Jul 2010
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BoxerMom
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posted
Up for more input.
I am STILL treating Babesia! Apparently my certainties in life are death, taxes, and Babesia. Grrrrr....
And my symptoms now seem to morph. Constantly, frequently, and to my great annoyance.
Current sx: (all of which come and go, often quite rapidly)
Drenching night sweats Chills Low grade fevers that feel like they should be higher Hot flashes Extreme cold extremities, like my feet are in a bucket of ice Running vibrations, esp down thighs Profound exhaustion Depression Utter hopelessness Apathy Brief tachycardias Brief arrhythmias Brain fog Morning stiffness Foot pain, esp heels and soles Random stabbing pains Global brain swelling Stabbing ice pick headaches Bone pain in legs Muscle weakness Pain in large muscles, esp quads Hip pain Frontal headaches, esp between eyes Tinnitus Teeth and jaw pain Sound and light sensitivity Air hunger Afternoon crash with onset of most symptoms Second wind at night with resolution of most symptoms (I would be an awesome vampire) Difficulty falling asleep Difficulty waking up Cortisol dysregulation Low blood pressure Blurry vision Eyes don't converge on horizon, weak eye muscles? Tea colored morning urine (red blood cell casts) Insulin dysregulation Poor blood sugar management Feel significantly better on very low carb, no sugar, no grain diet Feel significantly better when eating very little Nausea Dizzy spells Brain feels spacey, kinda high
My Babs' symptoms were vague at best before my Lyme diagnosis. I definitely did not have the "classic symptoms" of fever, chills, sweats, air hunger.
I got all of these and then some when I started Babesia treatment. They were constant companions for a full year. The worst symptoms are gone now. I haven't had an episode of derealization, depersonalization, or suicidal ideation in years.
I don't spend half the day crying. No weird rages at nothing in particular. The deep and profound despair is gone.
During my first year of Babs' treatment, I swore I had brain damage and would be that way forever. Now I can see that my brain symptoms come and go with inflammation. I have periods of lucidity that awe me.
The meningeal swelling causing neck and mid-back pain that made me want to cry is gone. (My ability to write a coherent sentence, apparently also gone.)
No more allergies. Still can't eat eggs, but the rest of the environment is not so hostile toward me.
In fact, most symptoms are only present during my afternoon flare and when herxing.
But now I have completely new symptoms. Nausea, tinnitus, sweats (never had those before), vibrations.
Oh! Facial tremors are gone. None for maybe 6 months now.
Of course I wonder if Protomyxzoa Rheumatica is an issue now. I take many anti-malarials and anti-parasitics, so treatment is covered.
I can't believe how tenacious and mercurial this bug is. But as frustrating as this has been, four years ago I would have killed to be at this point in treatment.
I have parts of days that are symptom-free. I occasionally wake symptom-free. I hate my continued reliance on meds and supps, and my compliance has been for crap lately, but I can't deny that I am still slowly and steadily improving.
I don't know if there is an end to this. I hope so. My life is so altered, there is really no life to go back to. But I would still like to think that someday I will attain reliable health and a reliable brain. And do something other than treat infections.
posted
Gosh Boxermom I feel like I could have written that myself. I have treated all of the infections aggressively too.
I am having days that are completely symptom free, for me it seems I go 2 good days, 1 with symptoms. I recently had to go back to treating Lyme so I don't know if the symptoms are coming from cleaning that up again.
I am also doing Coartem, every other week, some times I do two weeks in a row, I am also on double intracellulars which will hit Bart if that's an issue.
I am starting parasite treatment soon with pharmaceuticals. I really don't know what is going on with me. I wonder if it's FL1956 too. I am doing so much better, but still have these symptoms. The every 3 day thing makes me lean toward Babs, but who knows.
I also feel like my life has gotten so small due to these infections. When I am feeling good I realize that I'm going to have to rebuild it. I also have had 2 shoulder surgeries during this time, which make my life even smaller. I am 3 weeks into my second one.
I am so happy that I am at the level of health I'm at (compared to where I was) but I am not where I want to be. I want a remission. I feel that I might still have something active so I am afraid to go off abx and have a big setback.
I also wonder if it's Thyroid related or some other hormone. Well, I guess I will just stay after it for now and see if I continue to see improvement.
Thanks for sharing.
Posts: 845 | From Northeast | Registered: May 2011
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Sounds like way too much suffering to me. I'm very sorry!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CD57
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Wow, this symptom list looks like me too although I would have attributed some of those symptoms to bart (we've talked about this). The DP and mood stuff that you mention is something that has never gone away for me. I
I would add:
deep vascular bruising mostly on shins sometimes arms tendonitis like feelings in forearms jaw pain burning red/purpley hands swollen lymph nodes under jaw and sore throat mouth sores
Still babs?
I started malarone and half dose Alinia 2 days ago. Notice nothing yet. I'm wondering if some people don't herx until the levels get really high? I just, oddly, feel better, which I attribute to suppression of the bugs but not death. Could be wrong?
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CD57
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Boxermom, I was thinking about you...I wonder if the appearance of some new symptoms means you have knocked down your babs and something else is flaring, per the carousel/onion theory?
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BoxerMom
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RC1 - I will PM you.
CD57 - I know. Right? Fry Bug is the obvious choice for "what's on top" now, so I'm taking tons of anti-protozoan meds and herbs. I only got worse on Rifampin combos, so likely not Bart. I've treated the crap out of Erhlichia, but who knows?
I think my sketchy compliance has made a mess of treatment. When I get off schedule with meds I can't always tell flare from herx.
And I'm sure my Babs is developing Atovaquone resistance.
I always feel better with more meds on board, so I'm getting back on track with dosing. Continuing CSM. Saunas. Gym.
It may take a couple months to sort out the latest variables. But I will keep you posted.
CD57
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I think the treatment for Ehrlichia and Bart is the same .... Rifampin and doxy right?
what happened to you on Rifampin? could the fact that you got worse on it mean that you were killing bart?
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BoxerMom
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I should be more specific. By "getting worse" I mean just that, symptoms increasing with no herxing and no improvement.
When I'm herxing, I may be feeling worse, but I'm actually getting better. There is noticeable improvement.
I usually just use "herx" and "flare." I should stick with that.
Rifampin was a great Bart med for me during the 18 months that I treated Bart. Ever since, it has not led to improvement.
I've taken buckets of Doxy. And I've consistently felt better on Mino.
I really think this is still Babs. And maybe Fry Bug. I herx and then improve on antimalarials. That has always been my pattern.
BoxerMom
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Thanks TC.
It is ALL herxing. I'm an OK detoxer. And I always feel better with more detox.
I'm just tired of the slog. Like so many, I've lost decades of real living to this disease. Still want to actually participate in life, in some capacity other than treating Lyme.
Yes, I am being treated for depression.
No advice, please. Just acknowledging the frustration and boredom.
glm1111
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Maybe try salt/c along with some herbal antiparasitics?? If you haven't seen visible parasites on antiparasitics, sometimes salt/c will push them out of their comfort zone. Worth a shot if you're still so symptomatic.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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CD57
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How is the CSM treating you -- is that taking the edge of the herxing/new symptoms? Hope so. I am TOTALLY with you as far as losing real living. This is insane, really.
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BoxerMom
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CD57
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how are you Boxermom?
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nefferdun
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Just reading through some of this again, I don't think insomnia is a symptom of babesia. Protomyxzoa is very similar to babesia except it causes insomnia.
Someone else said they had allergies from babesia. Again protomyxzoa causes nasal congestion.
Even I complained about getting a hoarse voice and dry cough in this thread. That can be protomyxzoa which I found out later I had.
As for night sweat, babesia duncani does not cause bad night sweats - babesia microti causes the drenching sweats. I did get a lot of hot flashes from duncani though.
I believe many people continue to treat babesia and do not get better because they have protomyxzoa, maybe together with the babesia at first, but later alone. The anti-malarial drugs require huge amounts of fat which stimulate the growth of protomyxzoa so the person gets worse and worse.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I didn't get the chills and fever, only a bullseye rash and bells palsy at first. My severe symptoms took six years later to bare their teeth.
Then it was hell on earth; pain and severe fatigue that put me in a alternative universe where I could care less than to sleep and sleep; screw everything else, personal and business.
Thank God for the breast cancer, that brought me back to earth again.
When the reconstructive surgeries were over, 2 years later, I could only sort out my remaining symptoms: fatigue, joint pain, continuing hot flashes, headaches, etc. etc.
The doctors said I was just "getting old", but I thought that feeling 95 at 55 was a bit much.
That's when I found Lymenet.org: you all are Angels! I have been diagnosed and am being treated now, and feel so much better!
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nefferdun
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You have been through a lot Crawgirl. Wanting to do nothing but sleep and feeling like nothing matters sounds familiar. I felt that way too. I am glad you are getting better.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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CD57
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up! anything new here?
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lax mom
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Ice pick headache= is that Babesia?
My husband, who is nearly well, was taken off Malarone in April. Now he has almost daily, weird, ice pick headaches. Could this be Babesia trying to come back?
He had a very high positive test for Babesia duncani last year.
bcb1200
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Been a while. up again!
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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bcb1200
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Edited and added Dr. A's symptom list on first post, page 1
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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Catgirl
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Great thread bcb! Lots of info for people questioning what they have.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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bcb1200
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up
-------------------- 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: 3139 | From Massachusetts | Registered: May 2010
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