posted
Hi. I'm really needing more help for Lyme, but I'm scared to have a Groshung catheter (port) put in again for IV antibiotics.
I did this for a year on two separate occasions, and both times not only did I get too sick to work while herxing, but also upon ceasing first Rocephin then clindamycin (second port), I got such severe anxiety I had to be hospitalized. Never had to be hospitalized for Lyme otherwise.
I'm a single mom working part-time, as it's all I can do, and I can't afford to lose my job. Have no disability income, no child support, no alimony, nothing. I have to provide for my family.
Right now I'm nearing being too sick to work with Lyme, but I can't afford to get worse before getting better, and I certainly don't want to be hospitalized when coming off IV antibiotics again either.
Should I ask my LLMD about another year of oral abx? Any other ideas? Thank you!
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Were you ever treated for bartonella or babesia?
When you were done with IV did you follow up with herbs and such?
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
posted
No follow up with herbs. Didn't know I was supposed to and don't know which herbs to take. Sorry- just now saw that question.
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
The 2 IV meds you did hit Lyme....nothing for bartonella. There is the theory that as one infection is "beat down" the others rise to the surface. Bartonella can cause extreme anxiety- if you treated it, it would have been with rifampin, bactrim or even biaxin....but it takes a while to get under control
Babesia can also cause anxiety. Perhaps you need to talk to your LLMD and see what you took for Babesia/bartonella and how long. May need to revisit the co-infections
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
posted
Rocephin is bacteriostatic for bartonella but not bacteriocidal -- so stopping that med would cause bartonella to get worse if it was still an active infection. Anxiety is a fairly common bart symptom.
Clindamycin helps treat babesia and stopping that med could cause babesia to get worse if that infection is still active. Babesia can also cause anxiety.
Treating just one infection at a time -- especially just lyme -- does not work for many people. It is hard to find combos that treat lyme and babs and bart all at the same time. But it should not be too hard to find a combo that will treat both lyme and babs or lyme and bart.
I would suggest listing your symptoms and seeing which of the 2 coinfections seems to be the most active -- bart or babs. And then find a combo that will treat lyme plus the most active coinfection.
It sounds like your LLMD is not focused enough on the coinfections in my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
gmb
Unregistered
posted
Ellen,
Its possible that the IV you took to treat lyme was also enough to hold back Bart and/or Babs. And when you stopped the IV either babs or bart (or both) flared up. Just a possibility, I'm not a Dr.
When I was on IV for 15 months I as also treating Babs really heavy with double dose Mepron, Bactrim, and Zith, as well as pulsing TindaMax.
Near the end of that phase I felt I hit a plateau with Mepron and stopped it and went to Crypto and Sida Acuta herbals for a month or so before I stopped IV and switch to oral mino along with the Bactrim.
I soon slid-back, but it wasn't from Lyme coming back. I thought it was Babs, but now I'm thinking it was Bart that was holding back my Babs progress.
It's complex separating Lyme, Bart and Babs symptoms what often overlap.
Beths brings up a good point about treating co's. Have you done a course of Rifampin/doxy yet? or 6 months or more of Mepron?
Cats Claw and Japanese Knotweed are two good herbs to phase in when cutting back ABX protocols. I'm sure others here have more to add. Also try chasing parasites just to cover all bases. Salt/C and parastroy or hunaworm are cheap and worth a try.
posted
You may have gotten off your meds too soon. Clindamycin does help greatly with Babesia.
You can do oral Clindamycin. Try orals and see how that goes. Definitely have to hit the coinfections.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Ellen, Burrascano says that for a person who has had lyme disease for at least a year, ALL coinfections have to be treated in order to clear the lyme disease.
So, if you didn't treat babesiosis, or if you didn't treat it until you got rid of it, that could explain what happened to you. Same if you still have bartonella.
"Therein lies the significance of co-infections- if a Lyme patient has been extensively treated yet is still ill, and especially if they are experiencing atypical symptoms, suspect a coinfection."
This is one of the cardinal principles of the Burrascano protocol.
The coinfections help each other to remain in the body. You must eradicate every single one before you can be healed and not relapse.
So, even if a person doesn't have symptoms of babesiosis, the lyme doctor should give them a course of babs meds to see how they react.
I had no noticeable babs symptoms, but I tested positive for it through Igenex FISH (meaning, it was seen in my blood). When I started treating it, wow did I get symptoms.
So, go back and retreat for babs and perhaps bart and do everything Burrascano says to make your immune system strong. That means 1 continous hour of weightlifting (a full body workout) every other day. This will strengthen your immune system so that it can handle whatever left over germs there are once you stop meds.
"LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission." (page 31 of Burrascano Guidelines)
Also, no alcohol or smoking as these weaken the immune system.
I agree that orals should be all you need. Both babs and bart can cause that horrible anxiety, as can lyme. So, just carefully treat for "the big 3" (lyme, babs, and bart) and then see what you get a reaction to.
Really, your lyme doctor should know this. If you have never STUDIED the Burrascano Guidelines, it is time you did so. With this disease, it really pays to be an informed patient. That is how you will know good lyme treatment when you get it and how you will know when it is time to change doctors.
Don't despair. Things should turn out alright if you do your homework and figure out where your treatment was lacking.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I have taken six months or longer of Mepron, azithromycin, TindaMax, and doxycycline.
I've not taken bactrim, rifampin, Cats Claw, or Knotweed.
I relieved to hear of your optimism about oral treatment alone, as I have poor insurance right now and can't afford IV.
Yes, I do have to become a more informed patient. It's just hard when I'm legally disabled from dysautonomia, Lyme, a Chiari malformation of the brain, and anxiety.
I'm also a single mom trying to work despite my disability. I feel victorious even for putting mac & cheese on the table for dinner. Right now I'm just trying to stay alive, keep my job, and take care of my kids.
Thank you everyone for your prompt feedback. I'll definately be doing some reading before I see my doc again, and will discuss the anxiety with him and treatment for bart and babs.
Please keep any further feedback coming.
Appreciate you guys like crazy!
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Mepron and azithromycin is the standard treatment for babs. Plus, you MUST add in artimesinin. This is per Burrascano.
6 months is likely not enough to get rid of babs. A year is more like it. Many have to treat much longer. It just isn't easy to get rid of babs. So, see what happens when you treat babs again.
You can try Bactrim DS instead of mepron/zith if you want to save money. (Bactrim hits babs AND bart, so that is a plus.) Just be sure you add in artimesinin also. See if you get any reaction to the treatment.
I got rid of babs taking only Bactrim DS and artimesinin. So, it can work.
See these quotes:
"the current regimen of choice for Babesiosis is the combination of atovaquone (Mepron, Malarone), 750 mg bid, plus an erythromycin-type drug, such as azithromycin (Zithromax), clarithromycin (Biaxin), or telithromycin (Ketek) in standard doses....The duration of treatment with atovaquone combinations for Babesiosis varies depending on the degree of infection, duration of illness before diagnosis, the health and immune status of the patient, and whether the patient is co-infected with Borrelia burgdorferi....Treatment failures usually are related to inadequate atovaquone levels.
Therefore, patients who are not cured with this regimen can be retreated with higher doses (and atovaquone blood levels can be checked), as this has proven effective in many of my patients. Artemesia (a nonprescription herb) should be added in all cases.
Metronidazole or Bactrim can also be added to increase efficacy, but there is minimal clinical data on how much more effective this will be." (page 24 of Burrascano Guidelines)
Let me also give you the notes I took when Dr. H. discussed babesia at a lyme conference 2 years ago. 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.
[end of notes]
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Great notes, TF!
Awesome post! Thanks Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
If it were me I'd be taking nutrasilver, a powerful antiseptic, during, between and after any antibiotic therapy.
The only problem with this is if the silver is working it may get attributed to the drugs.
Living where i live with all the ticks around, I may never have another day without nutrasilver.
I dont have babesia Im pretty sure, but MMS cures all malaria in only one or two doses. Since babs is similar it may be worth the try, but babs hides in the RBCs, and I dont know that malaraia does that (maybe- I dont know), so treatment may take longer.
Posts: 803 | From USA | Registered: Oct 2013
| IP: Logged |
posted
Thank you for all the detailed notes! It was my understanding that Lyme and coinfections coud be treated (kept under control) but not eradicated. Am I mistaken?
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Hmmm jus a thought...diflucan might work
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Carmen:
Since babs is similar it may be worth the try, but babs hides in the RBCs, and I dont know that malaraia does that (maybe- I dont know), so treatment may take longer.
Carmen, malaria does infect the red blood cells. Google for malaria, red cells.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Ellen, Burrascano certainly believed that lyme and cos could be eradicated. He got rid of his lyme and it never came back.
The same is true of the top notch lyme doctors: Dr. H of NY, DNP S of D.C., Dr. S. of Maryland, etc.
And, also true of Pam Weintraub, author of "Cure Unknown" and I assume the same for her husband and sons.
I completed my lyme treatment over 8 1/2 years ago and I am still symptom free. Plus I have 5 friends who got rid of lyme.
Burrascano says that if the lyme does not come back within 3 years of stopping treatment, then it will NOT come back. So, I say I am cured.
Now, perhaps your doctor has a different point of view.
Burrascano says that a "select group" may not be able to get rid of lyme and will have to be on maintenance therapy (one week of antibiotics per month) to stay well. Here is what he says:
"Unfortunately, not all patients with chronic Lyme disease will fully recover and treatment may not eradicate the active Borrelia infection. Such individuals may have to be maintained on open-ended, ongoing antibiotic therapy, for they repeatedly relapse after antibiotics are stopped. Maintenance antibiotic therapy in this select group is thus mandatory.
In patients who have chronic Lyme, who do not fully respond to antibiotics, one must search for an explanation...." (p. 20)
He then goes on to explain the possible causes of not fully responding to antibiotics, such as pituitary insufficiencies, heavy metals, etc.
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!
![[Smile]](smile.gif)
Printer-friendly view of this topic