posted
So I have NO positive test--lyme, bart, babs, all negative. So we are going off of symptoms and experimenting.. yeah!
I have a lot of head pressure, eye pressure, etc. At first I thought it was Bart, but after being on rifampin for 2 months, it got worse.
I was thinking head pressure, etc. could be babs, but I don't really have the 'main' symptoms of babs--air hunger, night sweats, etc.
Just wondering your thoughts. Does anyone have head issues with babs?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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TF
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posted
I thought you had quite a few positive bands on the Western Blot. If you had even one band that is specific for lyme, then we consider that positive for lyme.
So. we would not call you negative for lyme.
When I had babs, I never had air hunger or night sweats. However, I had a positive test through Igenex, so we KNOW I had it.
So, you can actually have babs with virtually no symptoms. However, when I started treating it with Burrascano-type treatment, I got horrendous babs flares.
So, you don't need the "main" babs symptoms to have babs. See the following quote from Burrascano:
"It has also been reported that Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness. Subclinical infection is often missed because the symptoms are incorrectly ascribed to Lyme." (p. 23)
Posts: 9931 | From Maryland | Registered: Dec 2007
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MannaMe
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My hubby never had air hunger or night sweats, but he does have 'tipsy-ness' and muscle pain.
He started rifing for babesia before he got in to his LLMD to start treating Lyme & co's. He started feeling better almost immediately with just rifing babs.
Posts: 2252 | From USA | Registered: Aug 2011
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posted
Thank you TF. I need to read Dr. B's protocol again.
I had a few bands that were positive via igenix. I'll go look for the paper work later. My current LLMD likes a different lab that actually sends a picture of the western blot so he can look at the bands. I'm active in all bands, but not in the levels needed for a true diagnosis.
Thank you for telling me about your babesia. I really feel like a lot of my head issues are coming from babs, but do not have the major symptoms.
What was your herx like when you started art? I will be on Bactrim and Art, as well as doxy and tindimax.
MY LLMD told me that if I have bart, I will herx pretty badly on it. Just wondering what to expect from a babs herx.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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TF
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When I had a babs flare, "serious lack of energy" was an understatement.
All I did was lay there. I didn't move. I didn't talk, eat, drink, go to the bathroom, etc. I was like a zombie. I went in and out of consciousness.
And, I had a horrendous sense of doom! I believed that I would always feel this horrible, never get any better, etc.
I couldn't talk myself out of it by saying, "The same thing happened at the last flare, and it lifted and you were fine again."
No logic worked. I was convinced I was doomed permanently. This happened to me every 7 days. My lyme doc said that babs has a 7-day cycle and that was what I was experiencing. It came like clockwork for me.
Then, my doc added artemesinin to my Bactrim. Immediately the flares went down to nearly nothing. All that would happen was I would get an overwhelming need to lie down and sleep. I would sleep anywhere!
So, once the art was added, it just got better every week until I no longer needed to take any naps at all on my regular 7 day flare.
Then, the flares moved to every 14 days. Same as earlier flares.
Then, eventually, no need to lay down at all. That is how we knew the flares were over and babs treatment was complete.
Per my doctor's orders, I took art twice per day on an empty stomach. I took the art 3 days in a row every week. I took the art to encompass the flares.
So, since my flares always started on Friday evening and ended Sunday evening, I took the art starting on Friday morning and ending Sunday evening every week.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thank you Manname. That confirms what I thought also. I still haven't looked into rifing. Glad it helped him.
Thanks TF. I get the 'doom' flares, but it's probably every 2 weeks. Here's hoping Art helps.
Thanks for the suggestion type. I'm also pulsing. LLMD wants a higher dose than you did, but so far I haven't been able to tolerate really high doses of anything, just regular doses.
sooo. I'll keep you posted.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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I know how awful head pressure is!!! I have the same thing, although it has morphed more into odd and sickening sensations inside the head...
I am pretty sure my main problem is babesia. I only had mild sweating issues at the beginning but since treatment with mHBOT have began the hunger issue problem.
Hope this helps, and best wishes!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
Thank you foxy loxy!!! Thank you everyone for all the support! Now that it is January and my deductible isn't met, my price for tindamax is $600!!!! Blah
I found a coupon online though and hoping my pharmacy will be awesome and take it.
Hugs to all.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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TF
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posted
If you get the babs doom flares, you can be sure that you have babesiosis.!!!
Track them on a calendar. My lyme doc said that babs has a 7-day cycle and a 14-day cycle.
So, you should see one or the other.
By rating your flares (0 to 10), you can see your progress and can sort of predict when you will be done treating babs.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- 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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MannaMe
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Oh yes TF, I remember you talking about the 7 & 14 day flares. My hubby had them also. We really only took notice of it after you explained how it was for you.
Posts: 2252 | From USA | Registered: Aug 2011
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posted
Thank you everyone!!! So much!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Jordana
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My doc says that if there are no clear indications of a co-infection ( always including slides) that the way forward is to keep treating for Lyme keep treating for Lyme, keep treating for Lyme. No matter what else you have, you know you have LYME, which is what is allowing the other stuff to proliferate. Treating Lyme is the most productive option.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I will just throw in there that my Dr. says almost everyone has co-infections,(he has been a "lyme" dr ten years) and there is another thought that says co-infections keeps your immune system down and keep you from getting over lyme.
Esp. babesia. (and probably parasites)
I have read people with Babesia have been found to have way more Lyme in their blood stream. And are much sicker.
Jordana, I hope its true that you don't have any co-infections!!!!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Catgirl
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quote:Originally posted by HW88:
MY LLMD told me that if I have bart, I will herx pretty badly on it.
It depends on the drugs. We are all different and have different reactions to them. I felt better on some of the drugs.
TF is right, you don't need to have all of the symptoms to have babs, or for that much anything else IMO. That's how these bugs get missed. I've never met a lyme patient that didn't have babs though (it's that common).
-------------------- --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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Jordana
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I'm sure I do have co-infections. But if I'm not making any antibodies and it doesn't show up in a blood or PCR test it's impossible to know.
I think there are two symptom pictures, depending on the tick that bit you. People in the Northeast have babesia; people who are bitten in the South get more rickettsias -- or so it seems to me.
We have research that says that about 1/3 of ticks in the Northeast are co-infected with Babesia. But what if you were bitten by two ticks?
The problem is that Lyme leaves you open to any other co-infection including MRSA and strep, candida, salmonella and all viruses at low levels. It's very hard to figure out, even for researchers and LLMD's.
So whether you have co-infections or not -- the way forward is to treat the Lyme.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
On. my symptom list under Babesia, it says "Headaches can be severe - dull, global (involves the whole head, described like the head is in a vise.).
I have Babesia and take Artemisinin + Sida Acuta (recommended in Stephen Buhner's book on Lyme Co-infections - Babesia, etc.). I take Artemisinin two weeks on, one week off.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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One dr thinks Bart, the other who we had a 2nd opinion w/ thinks Babesia.
We don't know what to do. She is miserable. Anxiety has increased exponentially...however I'd be anxious too w/ a 2 week headache.
Any thoughts??? TIA
Posts: 62 | From VA | Registered: May 2016
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Catgirl
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Anxiety for me is bart related. Keep in mind that it is very common to have both bart and babs and more though.
Below is some info from Dr. Burrascano's protocol (babesia, notice the headaches). Other co infections can cause headaches too.
Babesia infection is becoming more commonly recognized, especially in patients who already have Lyme Disease. It has been published that as many as 66% of Lyme patients show serologic evidence of co-infection with Babesia microti.
It has also been reported that Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness. Subclinical infection is often missed because the symptoms are incorrectly ascribed to Lyme.
Babesia infections, even mild ones, may recur even after treatment and cause severe illness. This phenomenon has been reported to occur at any time,including up to several years after the initial infection! Furthermore, such Babesia carriers pose a risk to the blood supply as this infection has been reported to be passed on by blood transfusion.
SYMPTOMS Clues to the presence of Babesiosis include a more acute initial illness - patients often recall a high fever and chills at the onset of their Lyme. Over time, they can note night sweats, air hunger, an occasional cough, persistent migraine -like headache, a vague sense of imbalance without true vertigo , encephalopathy andfatigue. The fulminant presentations are seen in those who are immunosuppressed, especially if asplenic, and in advanced ages. They include high fevers, shaking chills and hemolysis, and can be fatal.
-------------------- --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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posted
tulips, how did you react to Art? I will start next week and am super nervous. I hear it's wicked.
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