I am at a crossroads with Lyme treatment for my son. He's had hand and feet arthritis symptoms since infancy and now he's 3. He needs daily ibuprofen to keep the pain at bay.
He was under the care of an LLMD for about 7 months who rotated multiple abx combos without seeing any effect so I decided to stop.
Then we tried gluten free for 6 weeks - no effect.
Now I am faced with 3 possibilites:
1. Go back on abx with the LLMD
2. Go to a Pediatric Rheumatologist (many people on the JRA boards are encouraging me on this as it's gotten their kids into remission)
3. Get treated by an LLND using a herbal protocol
We have an appointment with the LLND tomorrow and that's the direction I am leaning towards.
I am an old hand at abx/herbs/other modalities since we are a Lyme family and have been knee deep in this disease for years.
But I guess I wanted get some fresh perspective from you guys - am I doing the right thing by going with the herbs??
Any ABX failure people out there that turned to herbs and experienced any measure of improvement eventually?
Posts: 655 | From USA | Registered: Sep 2007
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Keebler
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- Is there anyway he could see Dr. J? or someone of similar experience with pediatric lyme?
A LL ND may well combine herbs AND antibiotics, if / when indicated. Not sure what state you are in and if they can prescribe Rx or not (if not, they would surely know a LLMD who could join in for Rx prescriptions).
An ILADS educated LL ND would know of how to proceed with the best medicine, whatever "corner" that comes from. It's usually not an either - or question but what combinations - at what times are the best choices.
If you do go the route of just Rx to target lyme / coinfections, even then, support supplements would be key - especially for kidney & liver protection and support but also for nutrient building. And, in such a case, a LL ND would certainly have a fuller educational background in the use of herbals.
Ibuprofen can stress kidney function, so it's even more important to have a LL ND at least on your team to help figure out how to work with that -- or other pain relief options.
Sorry to hear that the gluten free experiment is not yet showing progress. It could take several months, though, and if other factors (like lyme) complicate matters, it may not be so clear yet still important to at least stay with that for several months.
I sure wish you all the best outcome at every step. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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We actually took him to see Dr.J but he said he does not think it's Lyme and did not treat. I was surprised because Dr.J treated my daughter years ago and knew our family history with this illness.
So I took him to another LLMD who did the Igenex and was positive for Lyme and he treated my son.
Whatever treatment I go with I wish there is even a tiny indication that it might be working after a few months. So far that has been elusive. I am hoping that round 2 of herbal therapy will have a better outcome.
Posts: 655 | From USA | Registered: Sep 2007
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Catgirl
Frequent Contributor (5K+ posts)
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posted
Diet is huge for pain, as well as hitting lyme at the same time. Gluten free, sugar free and dairy free all help the body have a much less inflammatory environment, and inflammation = pain. IMO, this diet is mandatory for people with pain/lyme. If he is not doing all of this, you may want to start there.
IMO, we need both herbs and for some, abx. The bugs cannot develop immunity around herbs, so herbs are a good complementary treatment. I read a post about a month ago? where Rowingmom said her daughter did buhner herbs and detoxed metals (think it was cilantro), and she improved. Lyme is so complex, metals could be holding your son back. They hold whoever has them back.
Another big consideration would be parasites. They are considered the number one co infection. Unfortunately, too many people ignore this, and the medical community is clueless about this topic. I started to improve once I started taking anti parasite herbs and meds. I have other issues though so improvement has been slow going, but I have my brain back.
There is just so much under the lyme umbrella. Doc H's book is good in that it shows how many things pop up and need to be addressed. So it's never just lyme. Something is holding him back. IMO, an LLMD is going to know more about this than anyone. Diet, parasites, heavy metals, herbs and abx too.
You might also consider doing the 23&me test. It will give you a better picture on issues he may have. My pcp said lots of the people he's seen have many things pop up on this test. IMO, people who haven't taken this simple test are walking around blind.
Best wishes!
-------------------- --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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LisaK
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posted
wow, surprised dr j didn't take him on. and I agree with catgirl about diet for sure for that pain.
with that in mind, I must say that I was at my dead end with tx due to no more money and no insurance. I was ready to die.
I decided to try herbs becasue I thought I could handle that since it was way cheaper way.
I am WAY WAY better than I was under care of any llmd that tx with abx.
I do bare minimum with tx. meaning this is what I buy that I can't live without:
my herb kits when I do a tx multivit. digestive enzyme
and that is it. I take no rx of any kind.
I have another list of things I buy if I have money to spare. but this is irregular.
so I am seeing improvement from herbs. BUT, I know for a fact that some of the tx w/ herbs I took made me very ill and took weeks to feel better from herxing.
and the dr I go to , not even sure he treats young kids becasue of this reason. but he probably does some other prodocol. my kids are all older so this wasn't an issue.
if you wold like his info PM me and I can give you his email an dyou can ask.
he is in northeast Pennsylvania.
not saying what is good for me is good for all but I have been very pleased with my herbs.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
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- yanivnaced,
I wonder if you get back with Dr. J and explain there is now a positive test . . . he would want to know and he may have additional insight.
We are all still learning with this and each person is unique with their "mix" so even he might be able to help now whereas, for whatever reason before all the cards just did not line up.
I'm sorry it's such a puzzle, for all of you. I wish I knew more to help. I admire that you keep going, whatever it takes and even if that means good rest as best you can muster to recharge. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Sammi
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by yanivnaced: He was under the care of an LLMD for about 7 months who rotated multiple abx combos without seeing any effect so I decided to stop.
In my opinion, seven months is not long enough to see improvement if your son has been sick for three years. I was extremely ill seven months into treatment.
Every case is different. What make work for some people may not work for others. It can take time to rotate different treatments to find what works best for each case. Feeling worse during treatment is normal unfortunately.
Tick-borne diseases and treatment for them is complicated. I agree about contacting Dr. J to let him know about your son's positive test.
posted
I have a phone appt with the LLMD in a couple of weeks. I might have him back on abx with herbs if doctor is ok with that.
I do agree 7 months is not long enough to draw a conclusion. However I will not be going back to Dr.J. I will stick with my son's current LLMD.
Posts: 655 | From USA | Registered: Sep 2007
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posted
All I know is what has worked for my Granddaughter who is now 12. We took her to Dr. J when she was 3 and another LLMD in CA followed up and worked with DR. J. This is only my opinion not medical information. She was on Antibiotics for nearly 3 years. Her symptoms seemed to go away. After about a year, her symptoms came back with a vengeance, like I have heard so many people's do that have been on ABX. We started taking her to a clinic in ID that treats naturally and builds the immune system so it will recognize the lyme and fight it. She has no symptoms at all as we take here there 2x's a year now. At first we took her about every 3 months and it has gotten longer and longer in between visits. We take her now for Maintenance and it works great. We keep her on a Non gluten diet and she gets little to no sugar and eats an organic diet.
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
quote:Originally posted by yanivnaced: So my son just began a protocol of a couple of herbal blends from 'Beyond Balance'. MC-BB-1 and MC-Bar-1, under the care of his LLND. Anybody any have results they could share using these formulas?
I recommend starting very slow on these herbs. Like the Byron White herbs, they can be very strong. I could not tolerate the MC-BB-1 at even low doses.
I hope your son feels better soon.
Posts: 4681 | Registered: Oct 2000
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posted
I am still interested in getting a MHBOT chamber but we recently moved/renovating and so budget is a bit tight. Maybe in a few months.
ICE, that's a scenario that is the most discouraging - a multi year abx protocol costing time, expense and toxicity only to end up in relapse. Definitely don't want to go through that. Glad your grandchild is recovered now though.
It's still up in the air how I will proceed. Herbs are for sure but I am still debating adding back the abx.
thanks for all the inputs guys, it helps me to formulate a plan.
Posts: 655 | From USA | Registered: Sep 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Bartonella loves to make the feet hurt. If he was not on any treatments that kill Bartonella, then there would not likely be improvement.
Just my $.02...
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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randibear
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posted
can you try cowden?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
After 2 years of multiple/combo abx for IND lyme/positive bartonella, our 13 yo daughter was weaned from abx at 80% improvement.
We immediately started Buhner's full bartonella protocol (at low 1/4 doses) minus l-arginine and she held at the 80% improvement until the time (8 months later) when I added herbs from Buhner's babesia protocol. This resulted in a babesia herx (air hunger, chest pressure, sighing, dry cough, thigh pain) and a subsequent clinical babesia diagnosis from our LLMD. Testing had previously returned negative through Igenex and she was otherwise asymptomatic for babesia.
Now on a low (1/4) dose combination of the full bartonella and babesia protocols (minus l-arginine) we are observing 99% improvement. She is completely asymptomatic for her previous diagnoses of Asperger's, Tourette's, ADHD, PANDAS, motor delay and all of her bartonella pain symptoms have resolved.
And she just got 95% on an Algebra test on which the class average was 75%. 2 years ago this would have been unbelievable. Her cognitive ability and executive function have improved that much.
Her only remaining symptom is a single suggestible motor tic (it only happens when I ask if she has an urge to tic).
For us herbs, and more specifically Buhner's herbs, have brought remission.
If I had known then what I know now, we would have proceeded with herbs before considering antibiotic treatment.
While combo abx only contain a couple of ingredients, herbs contain many multiple synergistic compounds that can address even unidentified infections.
Perhaps our daughter's B microti and B duncani tests returned false negative, but perhaps she has an as-yet-unrecognized strain of babesia-like-organism or protozoa that is being treated with the herbal compounds. I don't really care to do testing to find out. I only know that Buhner's protocols have helped us immensely.
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
quote:Originally posted by rowingmom: Now on a low (1/4) dose combination of the full bartonella and babesia protocols (minus l-arginine) we are observing 99% improvement. She is completely asymptomatic for her previous diagnoses of Asperger's, Tourette's, ADHD, PANDAS, motor delay and all of her bartonella pain symptoms have resolved.
And she just got 95% on an Algebra test on which the class average was 75%. 2 years ago this would have been unbelievable. Her cognitive ability and executive function have improved that much.
rowingmom, this is awesome! What a turnaround your daughter has had. I am so happy for you both!
Posts: 4681 | Registered: Oct 2000
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posted
Rowingmom, The buhner protocol that you are using for babesia and bartonella, is it written in one of his books?
I heard he has an associate that will consult for a low fee, do you know anything about that?
Posts: 538 | From kentucky | Registered: Nov 2011
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The book containing the full protocol isn't due out until next spring, although it is now ready for pre-order on Amazon:
Natural Treatments for Lyme Coinfections: Anaplasma, Babesia, and Ehrlichia By Stephen Harrod Buhner
I had actually fully introduced the bartonella protocol (from information gained from reading the book) before I consulted with Buhner's associate Julie McIntyre:
At the time I was simply trying to maintain the gains our daughter had achieved with 2 years of abx for bartonella, and Julie said I was doing a good job.
Julie recommended a couple of other herbs to address brain inflammation, but I decided not to use them because I felt the problem was no longer brain inflammation - our daughter was functioning cognitively better than she had in her entire life. It was only some residual motor ticcing and shin pain upon exertion. She maintained the 80% improvement that resulted from abx treatment for 8 months.
At this point we trialed CSA (my idea, not Julie's), experienced the first babesia symptoms, got the clinical babesia diagnosis from our LLMD, and I then seriously turned to Julie.
She was able to help me develop a more thorough babesia protocol with information not available on the website (which I assume will be in the book). She also suggested other herbs and supplements (specifically cilantro and zeolite(we use DE instead of zeolite)) which produced further gains and essentially cleared up our last 5% (some ticcing and electrosensitivity).
Julie is available for phone consult for $150/hour which includes, I think, at least a weeks worth of e-mail questions post-consult.
She is quite busy now, and Buhner has suggested others that have been trained on his protocols on his website:
Peter Conway <[email protected]> Landline from UK 01892676214 or mobile 07973417553
3) I do not sell herbs or protocols. I recommend woodlandessence.com; sagewomanherbs.com; elkmountainherbs.com; 1stchineseherbs.com; greendragonbotanicals.com, and MontanaFarmacy.com.
4. Herb companies In Canada (they also ship to the EU, as do some of the US companies but they have an easier time of it): Herbies-Herbs.com; and monteagleherbs.com. (Jef Victor Juel Martinussen, via facebook, may be useful for herbs in the EU, try him.) (NOTE: He posted on my timeline about a more direct route to contact him but I am having no success searching the timeline for the information. . . facebook is well facebook.)"
-------------------- 13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement. Posts: 265 | From Canada, Ontario | Registered: Jul 2013
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posted
Thank you that was a very comprehensive answer. I am not certain how to proceed. I don't have the money for a top LLMD and I don't want to continue taking antibiotics without gain.
There is a risk to benefit ratio with antibiotics so the risks taken have to be worth it. I felt like I was just taking antibiotics but not making any progress.
Posts: 538 | From kentucky | Registered: Nov 2011
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Judie
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Member # 38323
posted
For me, herbs weren't enough when the infections were really bad and raging out of control.
"There is a risk to benefit ratio with antibiotics so the risks taken have to be worth it."
Yep, I've been in the same boat. If the antibiotics won't really kill these infections completely, I might as well just keep these infections in check now that the antibiotics have clobbered down the infections
I'm now taking BLt by researched nutritionals and pulsing artemisia to keep stuff in check.
I don't seem to backsliding so far with the infections, so I think that's a good sign.
I see my LLMD next week to discuss and don't really have the money to continue seeing the doc either.
Posts: 2839 | From California | Registered: Jul 2012
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