nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
This is my third round with Bart. The first treatment was in 2009 with Levaquin, which caused tendonitis. It was so bad I had to quit all ABX. For 8 months I used every herb under the sun - nothing worked.
Finally I went back on the ABX. First Rifampin, which I could not tolerate and then Bactrim DS, which seemed to knock it out.
Babesia Duncani came to the foreground and I treated that in 2010-2011.
Then the Bart resurfaced. I went all of the place trying to get help - to Dr. F. in AZ, to a local infectious disease specialist and finally to a LLND in Seattle who gave me Bactrim again.
Six months later, I quit the ABX. I thought I was well - or well enough. Looking back over my posts I see I never fully recovered. I had daily headaches, my feet hurt and I was extremely tired, with insomnia that I blamed on stress in my life.
I complained to the primary care doctor for four years about daily headaches, profound fatigue, collapsing, morning foot pain and back pain, dry eyes, pain over heart, UTI......on the last visit when I told her I was sure it was a bartonella infection, she just threw her hands up in the air and said, "this is way over my head".
I am not interested in hyperbaric treatment or herbs (I took them all) or light therapy (tried it), Rife or any other alternative treatment. I spent thousands on that stuff and none of it worked.
To be honest, I do not trust the people promoting over the counter cures because Lyme makes us desperate and we can be an easy sell for the most ridiculous remedies. I actually mixed DMSO with clove bud oil and rubbed it on my sore shins. It burned so bad I cried, but it did nothing to ease the infection.
I took 16 of Dr. Zangs HH capsules a day - nothing. I just smelled like a dead fish. Not too long ago I threw out two large boxes full of supplements and herbs. I paid thousands of dollars for them - they were expired.
This is what I know will help as far as alternative stuff. Liposomal EDTA destroys biofilm. Norwegian Kelp is supposed to get into the saliva to prevent plaque on the teeth, which is biofilm. Maybe it will help.
My sugar treats are gone - back to frozen blueberry and pomegranate smoothies with a bit of apple Cider vinegar. I eat vegetarian with a lot of vegetables.
So what gets rid of bartonella? Maybe nothing.
-------------------- 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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posted
What about checking on what Stephen Buhner suggests for herbal treatment?
Posts: 13117 | From San Francisco | Registered: May 2006
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Also, I recommend going to a LLMD. If you post in the Seeking A Doctor forum on this site, people can recommend LLMDs in your area.
Posts: 241 | From New Jersey | Registered: Jan 2015
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posted
I'm sorry to hear about your difficulties - as we all know, sometimes an individual's situation or the infections themselves can be obstinate.
How was your Bartonella originally diagnosed? Was it clinically or laboratory? If a lab, which one and did it mention a subspecies? You mentioned that the Bactrim helped you to some extent? It may very well be that you need to have a longer treatment protocol.
I would definitely seek an ILADS-trained LLMD or LLDO. You mentioned that you've tried many alternative therapies and spent thousands on them to no avail, so I would not look specifically for a ND or any other sort of practitioner at this point. This is not to say there aren't some beneficial complimentary therapies out there, but the best LLMD/LLDO is versed in these and other aspects of functional medicine, while also not either unable to prescribe or biased against prescriptions like Bactrim. If nothing else , returning to the LLND that prescribed you Bactrim DS in Seattle (Washington State rules on NDs are some of the more stringent and they have some Rx prescribing ability) may be an idea.
Ideally, being able to check into the presence of other co-infections and reevaluate may be helpful, as will gathering more data on your particular Bartonella case, especially if you didn't diagnose originally through an objective method like a blood test. There are many Bartonella species not to mention what are commonly described as "Bartonella like organisms" or BLO which seem to act/respond as bartonella but are either as of yet unidentified subspecies or something else entirely.
IgeneX has some newer, better Bartonella tests (as well as some overall solid tick-borne infection tests) that may be worth a try. Alternately, Galaxy Labs is (at least hypothetically) one of the most adept in the study of bartonella around (they study other organisms as well and accept both human and veterinary samples. I know a vet that sends certain samples there for analysis) , but the only downside is the cost of the tests which (if I am correct) are higher even than IgeneX and of course, do not accept insurance. Still, it may be worthwhile if it helps you to find the answers you seek. Note that you may need to/should be off any antibiotics, Rx or herbals alike, for a period of time (ask your Dr.) prior to the blood sample taken, in order to encourage the organisms not to "hide" due hostility.
It may also be worth it to look into other potential factors to your illness. For instance, there is mounting evidence that long term TBI patients will end up with HPU/KPU, types of porphyria. It can be identified with a urine test, though there are conditions (discontinue of certain supplements and vitamins for 7 days prior etc) for best opportunity. It isn't a very expensive test and the one popular lab that did it is actually owned by LabCorp now so they may very well be insurance covered! The only issue I know from this lab is that it is a single collection so I am concerned that those afflicted without the most severe forms and/or those that have been treating in advance inadvertently may not "catch" the pyrrols in that particular sample. I'm considering this test myself and am looking to see if someone reputable does it from a 12 or 24 hour urine collection instead. It is thought that HPU/KPU can be a major impediment to getting well, but thankfully when confirmed it can be treated by a knowledgeable physician.
Regarding biofilm, its never a bad idea to bring down biofilm, but remember there are different kinds of biofilm and the pathogens use them in different ways if specifically at all. If you were interested in breaking down biofilms there are varying compounds capable of doing so (ie lumbrokinase is particularly good at breaking down the fibrin-based biofilms; Bolouke is known as one of the best products of its type. Researched Nutritionals has a new biofilm busting combination, BioPure's CockTail has some good compounds including Red Rock Rose aka Cistus Incanus which emerging evidence shows action against biofilm etc..)
Due to the complexity of these illnesses and the individual circumstances there are of course other potential things to look into, but finding a competent Lyme-literate (ideally ILADS associated/trained) MD or DO is the place to start. Diganostics and treatment can proceed from there. Good luck and I hope this helps.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Of course, it would be great if you could find an excellent LLMD &/or LL ND with lots of experience who would also be able to interpret your individual body / symptoms and devise a personalized plan. Yet, at least for now, for your consideration as you sort of possibilities:
You say that you are not interested in any herbs as you've "taken them all" . . . yet, I wonder if you have taken ANDROGRAPHIS at the dose of 16 a day (four x 4)? I use Plantary Formulary brand.
Of course, that dose would be worked up to - and it may not be right for every one, but that's true for anything.
Though I still have far to go and generally can only afford the very least, it has clearly saved my life by helping reduce so much pain and neuro issues, even lessen seizures.
This is what really helped eliminate the (likely) bartonella foot pain for me. It took several months, though, and at times I had a few other herbs but most of the time just Andrographis as it's all I could afford and it covers many kinds of infections.
I could not walk at all before I started it - not from previous kinds of neuro reasons of muscle control that I had prior, but from the plantar fasciitis (which was far worse than just that, I know. Other symptoms of bartonella though not dx).
Buhner stated in at least one of his books that this is the strongest, most impressive herb not just for lyme but also for bartonella. In his first book on lyme, itself, he cautioned that some may experience a rash.
Although in his updated book on lyme he re-visited that and states it's rare so that if starting low and slow one does okay with it, it may well be one thing that can make a major improvement, as he's seen.
I also have his other books, and the one about bartonella but can't look at that now. You may be able to see inside at Amazon.
The think about herbs, even the advice of LL NDs, as with LLMDs is that each has their own set of experience / expertise. What might work for some does not work for all.
And some LL doctors just don't know about some of the herbs that Buhner suggests.
ANDROGRAPHIS paniculata - LINKS SET -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Do you have a glucose test kit at home? It would be well worth it to get one if at all possible. It might be that if you have glucose spikes after eating that not just glucose but the insulin surges that happen when glucose goes up could contribute to the foot pain.
Recently I did for about a month, testing each food as to how my body reacted. I have insulin resistance and this frequent glucose tested was amazingly helpful.
Test after a 12-14 hour overnight fast -- but not right after awakening. Those can be false readings so wait an hour or two.
Then, test 30, 60 and 120 minutes (two hours) after a meal. Note which foods keep you relatively steady and which don't.
I found out that even though below my 20-gram day limit of carbohydrates, 3/4 cup of butternut squash spiked my blood glucose 50 points. I never would have guessed. So that's off limits for me, now, for the better.
Glucose should be between 80-100 after fasting overnight for 12 - 14 hours.
After eating, between meals: in the mid to upper 90's, below 100. Even after food, if it jumps more than about 10-20, that indicates that the food might be too processed and the sugars in it absorbed too quickly.
More about how to test can be found at the Virta Health website - for how they address pre-diabetes, insulin resistance and even have been able to reverse diabetes and lower (or eliminate) diabetes Rx in many cases.
While the andrographis helped my feet so much, before doing the glucose testing for all foods I consume and going very low carb / high healthy fat . . . my fingertips would never allow me to type more than a paragraph at a time. Now, my fingertips are happy campers (though my joints still have a ways to go).
other than nerve endings damage from glucose or the insulin surges they create, the inflammation of excess glucose unable to be taken up can create so much pain.
Costco, most pharmacies have glucose test kits for under $20. Admittedly, the strips cost a lot.
I think that anyone should be able to get them under insurance for it tells one so much more than just a simple snapshot test at the doctors, even if the HbA1c test - that does not tell anything about how the glucose might spike and fall many times a day.
sometimes a doctor may prescribe the kit / strips if one might have pre-diabetes. Still, if anyway to afford on your own, 50 test strips would set you up to be able to test for many weeks, most of the foods consumed.
One consideration is that even with plant juices, they can spike and then sharply drop glucose terribly but the A1c won't show that as it's just an average. The spikes & subsequent drops can literally kill nerve cells and impair circulation. -
[ 01-09-2019, 04:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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Treating Bartonella infections, as you might be able to tell from this, is much more straightforward than treating mycoplasma. In essence, three primary things must occur: 1) the endothelium must be protected, 2) the red blood cells protected, and 3) the cytokine cascade interrupted. These three things alone will reverse the infection and most of the symptoms and eliminate the bacteria from the body. If the organs are protected, the immune system enhanced, and the symptoms picture addressed everything necessary is then in place to heal Bartonellosis."
From Stephen Buhner's "Healing Lyme Coinfections - Complementary and Holistic Treatments for Bartonella and Mycoplasma"
Healing Arts Press, 2013
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thank you for your responses. Keebler, you have been trying to help people on this site for many years.
I have decided to do the Bactrim DS route again to see if I can reduce my symptoms. Then I will be vigilant about diet - no sugar. Not getting sugar is easy but the cravings for other high carb food, like potatoes (I used to never eat), is difficult.
I believe the bart was attacking my brain making me apathetic to my symptoms. I believe it affects my craving food that feeds it.
I took some leftover Flagyl for about four days and it stopped the heart pain I was having. I even skipped a night of headaches and my back pain was lessoned. I had more energy.
So I respond quickly to the drugs. I just can't tolerate them very long.
My brain is in a very apathetic place, caused undoubtedly from bartonella, which I once described as being like the Harry Potter "Demontors" that just suck your will to live right out of you.
I am having a surge of renewed will to try to regain my health and not just accept that this is the way it has to be. It is hard to stay clear and on top of it.
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I forgot to include this in the above detail about blood sugar stability.
If glucose / insulin spikes might be involved in nerve pain - you might try steaming your veggies rather than juicing them and be sure that protein and good fat is with each meal so the veggies are more slowly absorbed.
If I recall correctly, you don't eat meat but hope that eggs and fish might be tolerated as they can help with glucose steadiness. Sardines have both good protein to help build up muscle & good omega-3 fats, too, good for nerve health.
Be sure to avoid any processed plant proteins products (best to stick to cooking your own dried beans / black rice) if they contain too many MSG-like substances ("natural flavors" usually is MSG and that can cause pain) as often is the case, sadly. Also see the carb count and keep that in check.
And be sure your magnesium levels are good. Maybe also check Vitamin D levels.
These are not direct helpers for Bartonella yet might offer you some relief along the way and if glucose / insulin spikes might also be involved. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Try cauliflower & butter or ghee instead of potatoes. Cauliflower can be cooked in so many ways, even mash it up and it's very low carb so won't likely trigger cravings.
Good fats like (grass / pastured source) butter, olive oil, coconut oil, etc. also help avoid the carb - brain craving triggers. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My Bartonella foot and toe pain was so bad it felt like I was pounding my naked toe tips into concrete. It also felt like there was no padding whatsoever on the bottoms of my feet, like I was walking on nothing but sore and sensitive bones. Tears often came to my eyes when I walked.
Any shoes touching my toes caused extreme pain, so I spent most of last summer in cushy soft sandals.
Then I was given a bottle of tart cherry juice concentrate, and after a couple weeks of mixing a few tablespoons with 16 ounces of water, the pain lifted! And then went away! Any time it comes back, I just go back on the cherry juice.
Not saying this is a cure.
Mentioned my experience to a friend and he said tart cherry juice coupled with diet changes cured his gout.
The brand I used is called Cherryland's Best, Door County Montmorency Tart Cherry Concentrate. I am sure there are many other brands.
Also, quite curiously, I had had some of the sore soles pains before, but the acute symptoms this past year began after 4 months of being dairy free. I went back on dairy too thinking that may have been part of the problem.
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
My Bartonella foot and toe pain was so bad it felt like I was pounding my naked toe tips into concrete. It also felt like there was no padding whatsoever on the bottoms of my feet, like I was walking on nothing but sore and sensitive bones. Tears often came to my eyes when I walked.
Any shoes touching my toes caused extreme pain, so I spent most of last summer in cushy soft sandals.
Then I was given a bottle of tart cherry juice concentrate, and after a couple weeks of mixing a few tablespoons with 16 ounces of water, the pain lifted! And then went away! Any time it comes back, I just go back on the cherry juice.
Not saying this is a cure.
Mentioned my experience to a friend and he said tart cherry juice coupled with diet changes cured his gout.
The brand I used is called Cherryland's Best, Door County Montmorency Tart Cherry Concentrate. I am sure there are many other brands.
Also, quite curiously, I had had some of the sore soles pains before, but the acute symptoms this past year began after 4 months of being dairy free. I went back on dairy too thinking that may have been part of the problem.
Posts: 422 | From Luck home | Registered: Sep 2005
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks Mjo! I canned a LOT of canned cherries last summer - like 20 pounds! I absolutely love them.
I am going to start eating them straight from the can instead of saving them for special occasions.
I started Bactrim DS again and the headaches are gone. The foot pain is less. I do not eat any sugar or honey, not even in my tea.
Hard.
-------------------- 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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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Do other pains go away also, after using tart cherry juice?
Posts: 2262 | From USA | Registered: Aug 2011
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