posted
Hi - We have a 23 year old daughter who is seeing a LLMD in the States. She has been on oral antibiotics for approx. 2 years. Her symptoms are more muscular-skeletal (joint pain). Every time we try and take her off antibiotics she relapses within days. It is very discouraging. We are trying antibiotics again and trying to get her back to feeling well and then will be trying the Cowden protocol with the antibiotics.
It is very frustrating as she does not want to be on oral antibiotics forever. Does anyone else have this problem and is there hope?
Thank you so much for your input!!!!
-------------------- doreen Fishman Posts: 26 | From Toronto, Ontario | Registered: Nov 2011
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posted
I don't have any answers... but I also have mulscular-skeletal pain and I am afraid of the same thing happening when I eventually come off antibiotics! :-(
Posts: 173 | From Washington, DC | Registered: Oct 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Sliding backwards means she's missing something else (another co infection). Does she have any other symptoms?
Even the tiniest symptoms that people tend to ignore can help with diagnosing stuff. I neglected to tell my lyme doc some very small symptoms that I thought nothing of (thought they were part of lyme) and they turned out to be from another co infection.
Has she treated parasites yet? Parasites are easily missed, along with proto (FL1953). Joint pain for me is from proto, but I have other symptoms as well.
-------------------- --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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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
The missing link for many as Catgirl has mentioned is the often overlooked co-infection of G.I. parasites. Check the info and symptom list at Humawom and also take a look at the PARASITE WARRIORS SUPPORT THREAD. Abx alone won't touch this kind of infection.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
doreen, I was on antibiotics for 2 years and tried stopping them a few times per doctor's orders. Each time, it took only 2 weeks for me to be as sick as a dog, back to square one (how i felt at the start of treatment) both physically and mentally.
I finally wised up and switched doctors when this doctor said it looked like I was just one of those people who would have to be on antibiotics their entire life. Baloney.
I then went to a doctor who followed the Burrascano protocol and got well. This was over 8 1/2 years ago.
So, the first thing to check is to see if her treatment lines up with the Burrascano Guidelines. This means being on more than one antibiotic at a time for lyme disease. And, they must be the high doses that Burrascano requires. And, a cyst buster must be added at some point.
Then, the patient must be tested and treated for all possible coinfections. This is another area in which my 2 year treatment was lacking. That doctor ignored coinfections!
The Burrascano-type doctor tested me through Igenex at the first appointment and found I had babesiosis and bartonella. (Nearly every lyme patient has these.) So, he treated me for both.
In 8 months of treatment, I became symptom-free. (I had never become symptom-free with the previous doctor.) Then, the doc kept me on meds for 5 more months because he doesn't let any patient stop treatment in winter or if winter is approaching. (It could cause a relapse.) Burrascano says to treat for 2 additional months once the patient reaches the symptom-free point.
Then, I was finished. He restored my gut, and I was a normal person. That was over 8 1/2 years ago and the diseases have never come back.
I suggest you go through the Burrascano Guidelines point by point and mark "yes" next to everything the current doctor has done and "no" next to the things he has not done.
Then, you know what is still to be done. Find a doctor who will do these things. Many can be done by the patient. For example, the non-aerobic exercise requirement. This is a necessity if lyme is to be cleared.
The patient must do 1 continuous hour of weight lifting every other day. All muscle groups must be worked.
Other patient requirements include no drinking or smoking, rest, etc.
Also, read the supplement list. Do a thorough analysis of her treatment, in other words. If it doesn't match Burrascano, then start by getting her good Burrascano-type treatment.
Hopefully, this is all that is needed. Many, many lyme patients who eventually educate themselves about proper treatment find that they have to switch doctors. That made all the difference in my case.
Contact a lot of patients of the new doctor before switching to him. You want to be sure that the doc fully follows Burascano so that you don't waste anymore time. Many doctors SAY that they follow Burrascano, but they don't really.
I went to lyme conferences, heard Burrascano speak, and studied his Guidelines to educate myself. That is how I came to realize why I was not getting well.
Generally, if the lyme treatment has been sufficient, such a quick relapse indicates an untreated coinfection. Think babesiosis and bartonella, but they aren't the only ones.
Lyme is slow growing, so it generally takes a month or more for those lyme symptoms to creep back.
What symptoms come back for her right away? They are the key to figuring out where her problem lies. You can compare the symptoms to each of the coinfections in Burrascano's Guidelines. See pages 26-27 under "Sorting Out the Coinfections" to help you do this.
Generally, if the lyme treatment has been sufficient, such a quick relapse indicates an untreated coinfection. Think babesiosis and bartonella, but they aren't the only ones.
Lyme is slow growing, so it generally takes a month or more for those lyme symptoms to creep back.
This is consistent with what I have found as well. You may be looking at another infection other than lyme.
Posts: 169 | From The Poconos | Registered: Jun 2011
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I know you can't mention names of Doctors on this site but I will name initials, if that's ok. We live in Canada and we see Dr. H, in New York, whom I understand to be very informed and has treated numerous patients. We did all the combinations of antibiotics and she felt great. We were on the path to going from antibiotics to herbs with antibiotics but never quite made it without relapsing. We are seeing Dr. H in December so I will discuss the thoughts of co-infections once again.
-------------------- doreen Fishman Posts: 26 | From Toronto, Ontario | Registered: Nov 2011
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I know you can't mention names of Doctors on this site but I will name initials, if that's ok. We live in Canada and we see Dr. H, in New York, whom I understand to be very informed and has treated numerous patients. We did all the combinations of antibiotics and she felt great. We were on the path to going from antibiotics to herbs with antibiotics but never quite made it without relapsing. We are seeing Dr. H in December so I will discuss the thoughts of co-infections once again.
-------------------- doreen Fishman Posts: 26 | From Toronto, Ontario | Registered: Nov 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, you are with a great doctor. He knows how to treat lyme properly. So, congratulations to you for getting to him.
Get him to put his thinking cap on and see what he comes up with.
She may need some additional testing to uncover the culprit.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Catgirl
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posted
I agree with TF, doc H is awesome. I can't wait to read his book! I would tell your daughter to think of as many symptoms that she possibly can, as all of them will help him find the culprit (also takes time monitoring her to find it). The more details, the better. Is your daughter keeping a detailed journal (including food)? It helps.
-------------------- --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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posted
For us I think it was a case of having to use a more comprehensive protocol than just using abx to kill the infection(s).
Our daughter relapsed when weaned from abx to Cowden after 6 months of treatment for lyme/bart. Perhaps her bacterial load was too high.
Another 1.5 years of treatment got her to a place where she was no longer herxing with pulsed (get ready) azith/minocycline/plaquinel/malarone/tindamax.
After this our LLMD gave me the option of stopping treatment, but I declined and did some serious research of Stephen Buhner's books (mycoplasma and bartonella coinfections, herbal antibiotics, herbal antivirals), along with a consult with his associate.
We are now using a variety of herbal decoctions (teas) and tinctures to decrease inflammation, support the immune system, and address any remaining infection. Because the herbs are broad spectrum, they may be helping other undiagnosed infections as well.
Although our daughter was negative for babesia, she responded well during abx treatment to malarone, and now to cryptolepis. She weaned from abx in April of this year and is still showing improvement with Buhner's protocol and A-Bart. I may consider A-Babs in the future.
Buhner's associate suggested that this protocol be followed for at least 1 year.
-------------------- 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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