posted
My son has been with one of the top lyme doctors in the country considered an expert on babesia and has not been able to beat it. Can anyone of you share what it realy took to beat this beast that can be life threatening. I am in tune with hyperbarics both HBOT and MBOT but was wondering if any of the rest of you had a combination that worked and how long you had to treat.
Posts: 366 | From Kalamazoo, Michigan | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry to hear that your son is still fighting such a nasty disease. Can you share what he has already taken (medication wise) so we don't spend time offering up what may have already been done?
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Your son could have proto (FL1953).
Proto has similar symptoms to babs and bart. On the babs side, chills, air hunger, hot flashes or flushes, sweats, insomnia, brain fog, poor balance and more.
-------------------- --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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I took many many rounds of clindamycin/quinine. My LLMD had me rotate that with regular Lyme meds. I took the babesia meds for 10 days, then the Lyme meds for 10 days.
I did that off and on for at least two years. Finally, he gave me zithromax and I took it with artemisinin. Two months later the babs was gone.
So .. take your pick as to what worked.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme doctor says he would rather have lyme than babesiosis for this very reason.
He got rid of my lyme, babs, and bart over 8 1/2 years ago now. Since I couldn't take zith or the other meds that need to be coupled with Mepron/Malarone, he cured me with Bactrim DS and artemesinin taken to encompass my weekly flares. The art worked like a miracle. I took it Friday through Sunday of each week.
In what state of the country is your son's babs expert located? Once I know that, I may have other suggestions.
For now, let me repost the notes I took when Dr. H. of NY spoke on babs at a recent lyme conference. Maybe this will give you some ideas. Here they are:
2011 ILADS Conference, Toronto, Canada
Lyme & Babesiosis: Updates on Treatment & Diagnosis 2011
Dr. H 10/28/11
He has 20 years of experience treating lyme; more than 12,000 chronic patients He was in France and China discussing babesiosis. Talked with Chinese CDC regarding parasites
Some of his patients get better with glutathione alone. It opens up the detox pathways (is an anti-oxidant)
Borrelia miyamotoi is showing up in ticks in Hyde Park, NY. This strain is in Japan. We can’t test for it.
There is a new ehrlichia species also found.
Indicators of bad outcome with babesiosis:
male sex, extremely high WBC
We see blood transfusion babesiosis in California. WA-1 is now in the Northeast U.S.. It is found along the entire eastern seaboard. It is difficult to get a positive test for it. LabCorp has a WA-1 test. The FISH through Igenex is also very useful.
He treats with clindamycin with azithromycin, also Mepron, then malarone. There is lots of Mepron resistance. So, he adds Septra (Bactrim). This works well. Also, he uses much higher doses of Mepron due to the Mepron resistance.
He uses coartem (which has Artemisinin in it) Dosage is 4 twice per day. Take at 7 a.m. and 3 p.m.; then switch to 7 a.m. and 7 p.m. It can be pulsed once per month.
You can’t combine this with any med that affects the QT interval.
Babs is spreading world-wide. Babs also suppresses the immune system (based on a study of b. microti)
Artemisinin is not as effective now as it was in the past. Use art when coartem doesn’t cure the person. He no longer uses ketek.
Beta blockers (blood pressure medicines) control these types of parasites. So, use them as an antagonist. We need a study on this. Heparin may also inhibit babs. Need a large study on this.
Curcumin (a herb)--he is now using it to treat babs. Published studies show it is useful for malaria.
Cryptolepis has been used in Africa for malaria. There is a published study in Ghana. It had a 93% cure rate (a 50% cure rate in 3 days; 90% cure rate in 7 days) You can get it at: www.woodlandessence.com
If adrenal function is low (patient has a low cortisol), they will not respond to antibiotics.
He told of a patient with intractable babs. They were treated for babs for 5 years and were not cured. Then, he gave them 1 teaspoon of cryptolepis 3 times per day with Byron White herbs. This is making the patient feel well. He hasn’t found any side effects with the cryptolepis. It may not be curative. It lowers the parasite load and strengthens the patient’s immune system.
Brucellosis also causes night sweats, so check for this in a patient with night sweats.
Use malarone for the patient who can’t clear babs. Low dose to maintain them.
We need new treatment options for babs.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I agree -- a list of the meds and more details regarding symptoms and test results would be helpful.
If the doc you are seeing is in New York he cannot legally order the Fry Lab tests which could be helpful. But if you live in another state your PCP could order those tests or a blood smear from Clongen.
I think a lot depends on what strain and if you have multiple strains of babs. Fry Lab is the only lab I know that can do a PCR test to actually identify multiple strains of babs. The Clongen PCR testing for babs is just not comparable -- a multiple strain PCR test does not seem to give the same results as the PCR testing from Fry Lab.
It is very important to know if you only have babesia or if bartonella is still also an issue in my opinion. Both take very aggressive long term treatment and it is difficult to find combos that will treat both concurrently.
There are many med combos that may not have been tried at this point. The most obvious one that some docs are reluctant to try is quinine and IV clindamycin. But that is just a starting point and actually needs to be combined with additional meds to be successful in my opinion.
A lot depends on how long the person has been infected and what has been tried -- the doses are equally important as the meds.
You may contact me at the email below if you want more details regarding hubby's treatment. I will always wonder if he would have beat the infection if it had not been for the 2 new tickbites.
seibertbb (at) yahoo (dot) com
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I brought up an old post titled "Primer on Malarial Drugs." Please review that and also the new info from Buhner (2nd link). I would definitely include enzymes as suggested by Buhner in any treatment plan.
Lots of options left. Few of the meds that helped hubby the most are on your list. Quinine plus clindamycin, lariam, flagyl and ivermectin are all still possibilities.
Less helpful but still possibilities -- Rifampin and doxycycline.
Also -- don't know what dose of malarone was used. Hubby definitely could tell the difference between taking 4 versus 6 pills daily.
One other thing I wish we had done differently with hubby -- wish we had done primaquine and chloroquine before taking a med break. Now I would substitute the tafenoquine if I could get my hands on it.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
If there is any way to prove pulmonary involvement (MRI or PET scan of lungs or low pulse ox for example)I would also push for a red blood cell exchange -- it is listed in the IDSA guidelines for babesia. This would probably involve a major fight with the insurance company but could be helpful if done in conjunction with aggressive meds.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Yes, I beat babesia! For me, it took getting rid of the Lyme otherwise the babesia kept relapsing. Once my body was healthy enough without the Lyme keeping my immune system busy, all it took was tonic water with natural quinine to help with symptoms while my body fought it off.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Babesia gone, lyme not gone. Had duncani (WA-1). Mepron and zithromax for a couple of months, with artemesinin thrown in at the end, took care of it. But did some malarone for a couple of months before this. Also had some clindymycin for lyme, but might have affected babs too?
Q. for TF: why would beta blockers have any effect on a red blood cell parasite?
Posts: 2888 | From USA | Registered: Mar 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
poppy, I don't know the answer to your question. I just took notes on what Dr. H. said.
Maybe if you got his book he might elaborate in it about that subject.
Posts: 9931 | From Maryland | Registered: Dec 2007
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CD57
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Member # 11749
posted
I find tutu's pulsed treatment very interesting. Possibly this is a good treatment, as it gets rid of some of the risk associated with long term quinine/clindy treatment?
Posts: 3528 | From US | Registered: Apr 2007
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posted
The above discussions have been very helpful for me !! I have been diagnosed with babs and I'm taking malarone and coartem plus numerous supplements... Been on treatment since Jan 2014 but have not seen much improvement yet ... The pain is awful any suggestions? TF I was wondering why doc wanted me to do an adrenal test now I know from your post and guess I better get it done. If anybody can message me about there Maryland doc I would appreciate it, just want to make sure I have a good one and not wasting time. Since it has taken me so long to just get diagnosed!!!
Posts: 21 | From Maryland | Registered: Mar 2014
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posted
The above discussions have been very helpful for me !! I have been diagnosed with babs and I'm taking malarone and coartem plus numerous supplements... Been on treatment since Jan 2014 but have not seen much improvement yet ... The pain is awful any suggestions? TF I was wondering why doc wanted me to do an adrenal test now I know from your post and guess I better get it done. If anybody can message me about there Maryland doc I would appreciate it, just want to make sure I have a good one and not wasting time. Since it has taken me so long to just get diagnosed!!!
Posts: 21 | From Maryland | Registered: Mar 2014
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posted
CD57 -- Hubby did the low dose quinine and clindamycin treatment like LymeToo for 4 months 3 different years in a row. Each time the treatment was less successful even with slightly higher doses of quinine. With that particular doc both meds were oral and at lower than IDSA doses. The quinine is 10 days on 10 days off but the clindamycin was continuous I think -- hard to remember.
Anyway -- during his aggressive babs treatment which was years later and lasted for 14 months hubby used high dose malarone and high dose doxy continuously plus IDSA doses of quinine and clindamycin (IV this time). This time he continued the clindamycin either 1 or 2 doses daily rather than the 3 normal daily doses in between quinine dosing.
During the aggressive treatment protocol he did the quinine 10 days on 10 days off for 4 rounds and then 21 days on 10 days off for an additional 2 rounds -- took a total of about 4.5 months for this part of treatment I think. (10 days Q, 10 day break, 10 days Q, 10 day break, 10 days Q, 10 day break, 10 days Q, 10 day break, 21 days Q, 10 day break, 21 days Q).
Also before starting this aggressive treatment he did one month of oral diflucan to lessen any potential c. diff and candida issues.
And during the 21 day cycles he added in IV flagyl which really stirred things up -- had the first of his 5 high fevers that summer after 2 weeks of daily IV flagyl. Eventually pulsed the remaining 2 weeks of IV flagyl for a total of 30 days/doses.
On the high dose quinine hubby did notice hearing issues -- said it sounded like he was in the bottom of a barrel. Those issues resolved each time he stopped the quinine.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Phoiph
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Member # 41238
posted
Stainsofpain....
I would recommend contacting this LLMD in Rockville, MD. Here is his blog with a link to his website:
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