posted
Questions for you all. I've been in treatment since April for; babs, bart and lyme. I had these three undiagnosed for around 4 years until this spring. I've taken a multitude of ABX. Currently on:Rifampin, Doxy, Cefuroxime, Mepron, Azithromycin, and now Tinidazole. I was on Flagyl for the last month but that caused some intestinal pain so I switch to Tinidazole. I did not herx on the Flagyl and am not herxing on the Tinidazole at all really. To be honest I feel great and I feel very fortunate to feel this well!!
Anyway my symptoms have cleared up to about 95% and have been this way for a couple months. The only slightly lingering symptom right now, (the %5) is this once a month sweating at night into my pillow. This is accompanied by a musty smell. At the start of this I was a neurological, nerve pain, extreme fatigue nightmare amongst many more symptoms.
I have another LLMD appointment here in December. Just wondering what my future goals should be here in terms of when to call off taking all of these meds. I desperately want to stop taking so much if this is my only lingering symptom. I want to quit before I wreck my gut. Can anyone here give me some advice on where I should go from here???? Thanks for your help. This site is wonderful and has helped me sooo much!!!
Posts: 44 | From Owatonna | Registered: Feb 2015
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Woo Hoo!!! That's great goose! I am SO happy for you! Well done with sticking to it!
What I am going to say next is going to sound like a broken record coming from me. BUT, your former symptoms and your current lingering "musty" sweats suggest a possible Brucella presence. Musty sweats is a telltale Brucellosis symptom. That's quite clear from the medical literature.
I wouldn't get too worked up about this possibility because if you do have it, your treatment protocol is definitely hitting it (Rifampin, Doxy, and Azithro would definitely be hitting it). AND, from looking back at some of your posts, it sounds like this protocol has possibly been hitting it all along.
So, I would bring this possibility up to your doc at your next contact with him.
I wouldn't get too impatient to stop treatment just yet if this is part of your picture. My opinion is that this will be worse for you if it comes back because you ceased treatment BEFORE all your symptoms resolved.
Also remember that Brucella (and Bart) love the GI tract, and what you may think is ABX damage from treatment may in fact be the lingering presence of these bugs. That has certainly been the case for me!
In fact, my pattern has been when I take an anti-parasitical (think Flagyl or Tinidazole, natural anti-parasitical, etc.), I get more gut pain and worse bowel issues. BUT, when I take ABX or antimicrobials that hit gram-negative bacteria such as Bart or Brucella, my GI gets better.
So, Brucellosis would seem like a strong possibility in my opinion. Your initial "neurological, nerve pain, extreme fatigue" symptoms are strong markers for Brucellosis, too. It's interesting that these cleared up with the treatment regimen you have been on for the past number of months.
Here are some links I shared in another thread about Brucellosis. The links I shared are very helpful if one is not familiar with the symptoms of Brucellosis :
Here are some points on Brucellosis by Dr. P taken from last year's (2014) ILADS conference:
"-Muscle pain, creaking and cracking, fever, malaise, sweats, arthralgia, back pain, chills, significant weight loss, fatigue, headache, and other symptoms can present with Brucella.
-Elevated CRP, Elevated ESR (sed rate), and anemia may present.
-Lyme disables many from their career; Brucella disables you from every aspect of your life. It is incapacitating.
-Underdiagnosed illness.
-There is a range of symptoms as with many zoonotic infections.
-It is a gram-negative intracellular microbe.
-It becomes the puppet master of the cell. Unpasteurized dairy, animal exposures to body fluids, hunters, and laboratory exposures by aerosolization are common sources of infection.
-Humans are dead end hosts though transplacental, breast milk, and sexual transmission have occurred in the literature.
-12.8% of cases happen in the winter; 78% in spring and summer.
-It has been isolated from ticks and fleas for 60 years.
-Transmission has been demonstrated with lice and blood-sucking insects in nature.
-It is not as hard to culture as Borrelia, but very close.
-It is slow growing; takes weeks for a culture positive with frequent false negatives.
-Bone marrow would be the best culture source.
-PCR is useful but new strains are commonly found.
-Chronic cases are often seronegative.
-ELISA and Agglutination Antibody testing are the most common; complement fixation testing is available in Europe and is better but not available in the US.
-Streptomycin, Gentamicin, Doxycycline, Rifampin, Bactrim, or quinolones may be used.
-It is resistant to Ceftriaxone.
-Earlier treatment results in better outcomes.
-Single agent treatments don't work.
-Treatment less than six weeks results in high failure rates.
-Herxes can be severe or fatal.
-Aminoglycosides may be used for 3 weeks with Doxycycline or Doxycycline and Rifampin for 6 weeks.
-Aminoglycoside and Doxycycline combination is more effective.
-Streptomycin is equivalent to Gentamicin in terms of effectiveness.
-There is no agreed upon curative treatment for chronic Brucellosis.
-It has blebs, L-forms, and biofilms.
-Levamisole is an antiparasitic and immune potentiator.
-Antibiotics plus Levamisole were better than antibiotics alone; though Levamisole can cause autoimmune disease and was taken off the market in 1999.
-Ivermectin may be a good replacement for Levamisole and does potentiate immunity.
-Gamma interferon is the principle cytokine involved in the protective response; no studies have been done.
-In a study with 3 groups of Brucella patients, the first group had Interferon Alpha, second had Levamisole, and third had conventional antibiotics. Groups 1 and 2 had clinical improvement and immune response. Group 1 did better than Group 2. Group 3 had no change.
-Liposomes mimic cell membranes and the immune system sees them as a foreign invader and gobbles them up. This can be used to enhance drug delivery and improve the outcome of some medications. Anionic (negative), Cationic (positive), or neutral.
-Liposomal Gentamicin study eliminated infection from monocytes; was 20 times more effective than free Gentamicin with reduced side effects.
-Would like liposomal aminoglycosides to be available.
-Brucella is related to Bartonella.
-True Brucella infection is not as common as Bartonella.
-Aminoglycosides may be a helpful option for Bartonella."
[ 11-18-2015, 03:16 PM: Message edited by: Robin123 ]
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
My experience with musty sweat smell is yeast causing it. After taking some diflucan, it has not recurred. Took me a very long time to figure this out. It was a bad smell!
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
TNT Thanks for the response!! I just assumed it was babesia because I have had other very specific symptoms of babesia. The thing that seems to be hanging on is these once a month night/stinky sweats. They are getting less severe though.
Poppy. It is not Yeast because these symptoms were very predominant for years before I started treatment. Thanks for you tip though...appreciated.
Posts: 44 | From Owatonna | Registered: Feb 2015
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Perhaps you can transition slowly into herbals?
So glad you are doing so well - that's inspiring!
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Goose, I'm 6.5 years lyme free. Congrats for you!
The hardest for me, was NOT to relapse. I would relapse after month 4 or so.
I used photon therapy with nosodes, the only thing that put definitively my lyme dormant.
Then I started doing the KPU protocol, to boost the immune system and take off heavy metals. BUt my body hated doing it.
I also treated my teeth, took away all dead teeth, treated cavitations.
Recently, I bought a Violet Ray, and I do like it. I think it helps cleaning my body, gives me energy etc. It is a good tool I think, to keep my health, specially, my teeth.
Since I started using it in Feb this year, I do not need the KPU anymore!
I think when the GUT and the MOUTH are clean, functioning, healthy, the body is ultimately healthy too.
So I would suggest treating your gut and mouth. Whatever you need for keeping your gut health, will help your health stabilize: eating organic, lots of raw, giving it water, good bacteria, live foods, taking heavy metals off, taking parasites off, eating allergy free...
Wish you good luck to keep your symptoms under control! shifting to homeopathics, herbs is waay better than keeping on chemical drugs.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wow ! So many excellent replies here. TNT, thanks so much as I learned a lot about Brucella. Thanks for those links.
goose,
So glad you are coming into a good place now.
I can't comment on what may be causing this (but do also consider hormonal fluctuations as possibly also be connected to the timing of this - in addition to an infection / yeast underlying prompt)
yet it seems that it may benefit you to get a rife machine and either see if your LLMD is knowledgeable about a wide range of herbals for transition or find a LL ND for that support.
How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)
Also includes article and book links by all kinds of LL authors - and information about herbal and nutritional supplements. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As for gut / mouth: gluten-free?
To help soothe gut / mouth tissue: Sea Buckthorn Oil; DGL; slippery elm bark (as a thick paste / soupy sip); Marshmallow herbal . . . .
posted
Wow is right!! Thanks for all the info. Does anyone know of any specific herbals that I can take to maintain for the big three? Bart, babesia and BB. Anyone taking any stevia extract? CBD oil? Just looking to take something other than atibiotics to help keep it back while attempting to stay in remission. Thanks!!!
Posts: 44 | From Owatonna | Registered: Feb 2015
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
quote:Originally posted by goose: TNT Thanks for the response!! I just assumed it was babesia because I have had other very specific symptoms of babesia.
Babesiosis and Brucellosis have so much symptom overlap that it is hard to discern between the two. But there are differences. One thing that has dawned on me is that Brucellosis encompasses all the symptoms of Babesiosis, but Babesiosis DOES NOT encompass all the symptoms of Brucellosis.
Here are a few examples:
Babesiosis causes air hunger and shortness of breath...so does Brucellosis.
Babesiosis causes tippiness and loss of balance... so does Brucellosis.
Babesiosis causes hemolysis (destruction of red blood cells)...so does Brucellosis.
Babesiosis causes sweats...so does Brucellosis.
But,
Brucellosis can cause a skin rash (usually maculopapular)... Babesiosis does not.
Brucellosis usually causes wasting...Babesiosis usually does not.
Brucellosis attacks the joints, especially the SI (sacroilliac joint) and lower back...Babesiosis does not.
Brucellosis causes genitourinary issues (particularly orchitis and epididymitis in men)... Babesiosis does not.
Brucellosis can be acquired by inhalation... Babesiosis cannot be.
As for maintenance herbs for the big three, I would recommend the Buhner protocol. It seems like those are the most helpful for the most people. But, it really does depend on what is causing your lingering symptoms.
Again, great job, but don't stop until ALL your symptoms are GONE!
Wishing you a complete and total remission!
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic