posted
hi. My daughter has been on Azithromycin, Minocycline & Tindamax (on weekends only)for almost three years now. None of the medications have been switched around.
Sh ehas come around about 70% but reached a plateau about a year ago. She started to gain weight, extreme fatigue, cognitive problems (spacey, confused, forgetfull, etc)and mood swings that were uncharacteristic.
I found a doctor who treats with more than just abx. He isn't against abx but feels we need to address all the underlyiong issues that were missed.
He discovered she has insulin resistance (possibly gene related and dietary choices of the past). She also has adrenal burnout and her thyroid that I was told was "normal" is actually struggling due to antibodies being produced and attacking the thyroid gland. Her T3 ratio is making her produce too much T4. She also has many allergies we were not aware of and was tested individually which is extremely accurate.
Based on these tests we found that the abx were actually surprerssing her immune system and caused Candida to be exteremely high. She is now on a clean "diary, gluten, yeast free diet" and I already see a change in her personality.
We have to avoid anything that causes yeast, this is very difficult, especially when you're on abx.
He doesn;t discredit the need for Lyme treatment but thinks she should be on something like Byron White so her body can take a break and we can work on the other entities.
Only problem is her doc doesn't do anything but abx and her new doctor isn;t comfortable guiding her with the BWF (I appreciate his honesty).
My question is this: how do I wean her off the abx in order to treat with the Byron White Formula or any other herbal/homeopathic treatment that will be strong enough to kill the Lyme but not her good flora (while we start addressing these other issues)? Also, can I do this alone? I would prefer guidance (especailly of she is on all these other products and won;t know how they will react)
Do any of my fellow Lymies have a dosage chart or guidlines for me to do this on my own? I hate to screw up 3 years worth of improvement b/c I don't know what I'm doing
Thank you so much for any help you can provide
Posts: 73 | From USA | Registered: Jan 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's certainly a tough call. I do not like to refer to myself as a "Lymie" however, if you are interested in various approaches, links here may help.
I understand the thought about antibiotics but they may be needed to get the job done - at high enough dose, every day of the week for some time.
With certain support measures, this can work.
Or you may want to consider a RIFE machine. If at all possible, find an ILADS educated LL ND who can guide you and your daughter.
Good luck.
-----------------------------------------------
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
My daughter and I started Byron White formulas while on antibiotics.
You start out real slow. One drop in water, twice a day and build up to 15 to 20 drops twice a day. You can herx from these so don't increase the dosage until no more herxes.
You can do these either with or without abx, just try to dose 1-2 hours apart from precriptions and supplements, not an easy thing to do with only 16 hours of awake time.
I think they are a lifesaver, but they don't work for everyone.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Just throwing in my 2 cents here. But it may just be that her unresolved 30% is in fact from all of the other messes that have not been addressed yet.
While there's the chance it could still be Lyme or a coinfection, and I'm no doctor, I can say from personal experience that antibiotics alone are not enough to get you to remission (or cured, or peaceful coexistence as I like to call it).
The disease and treatment both cause a ton of other messes (as you are seeing now in your daughter) and unless these other issues are addressed, she will not be back to 100%.
Unaddressed mineral deficiencies, food allergies, hormone imbalances, yeast and other fungi, parasites, detoxing and lifestyle issues must also be addressed.
I think it's great that you sought out additional guidance, and if it were me, I'd probably slowly switch her to herbs and see what progress can be made with this new doctor.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
PLEASE look into treating parasites/worms. They can be a co-infection of Lyme and are often overlooked even by the best LLMDs. Antiparasitic herbs and salt/c saved my life and turned the corner for me. Some here have had good results with Ivermectin and herbs.
These ticks are carrying parasites, and can be the missing link for chronically ill people who are not getting well. Some of the symptoms you describe are on the symptom list for parasites. Allergies is HIGH on that list and so is immune disfunction, fatigue and weight gain.
Check out the symptom list at Humaworm and google parasite symptoms. One os of tx is NEVER enough and must be treated long term and then maintenance dose or the cycle will start all over again from left over eggs and larva. Do a search on here for parasites as well.
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
| IP: Logged |
Do you know if parasites can give a person a low CD-57?
-LAXlover (75% of family has Lyme)
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I agree with GLM . Consider that possibility !
My 2 cents self treating after 3 years of ABX with little help : grapefruit seed extract artemesia annua from Herb Pharm ( others beieve samento or cats claw is effective )
These are a safe place to start and artemesia nd GSE can help with lyme and parasites .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I had to go off abx completely due to yeast, insomnia etc. My doc put me on Byron White. I felt better within two days. You have to start and continue slow on them, or you risk herxing hard which can cause treatment failure.
I also agree with Glm and Ann. So many lyme docs are missing the boat with parasites. I imagine some high dose abx kill some of them in combination, but for the most part, these bugs go unnoticed and undetected.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Wow, these are all fantastic suggestions, thank you all so much! Do you have to get Byron White from a doctor?
I completely forgot about asking her new doctor about the Humaworm that I bought for our family. Is this something that we can do with abx, herbs or BW drops Gael?
Catgirl, did you wean off? I'm so glad you felt better right away. Did you mean you felt better on the drops than the abx?
Annxyzz, how did you know how much to dose with? My biggest fear is that I will give too much or not enough..and the spacing of them...oy.
Lyme in Hell this is great advise. Could you pm me and let me know who you use to guide you. I believe that may just be the 30% but to be honest, I think the Bartonella hasn't been resolved. She had stretch marks on her buttocks that went away and moved up onto her breast. Should Bart be gone after 3 years?
Jackie, thanks for the advise, particularily on how to take them. My biggest fear is the dosage and timing of everything. I am so glas it is working for you. Did you see a big difference between that and the abx?
As always Keebler, you have great advise. Do you see a huge improvement in RIFE vs no RIFE?
Posts: 73 | From USA | Registered: Jan 2012
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
aLWAYS START LOW AND SLOW . GSE start with 2 drops . If too much , go back to one . Same thing with artemesia annua from Herb Pharm. There is science behind both .
Also, some are using Cowden protocol samento and banderol. Initially with these , the herx is strong for a couple of weeks.
Personally , I am better off taking herbs every other day . Every day makes me feel TOOOO toxic . Also , some chaga or cordycep mushrooms will boost her immunity . Young people have fiesty immunity - an advantage . Good luck!
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
posted
Again, thank you for the great information. Does this mean this combination which she has been on for 3 years isn't for Bart?
Posts: 73 | From USA | Registered: Jan 2012
| IP: Logged |
posted
Annxyzz, unfortunately the abx suppressed her immune system among other things. I'll have to try the mushrooms. Since she is also sensitive to molds should I avoid them though?
Many bites:Do I need to go through a doc for these vials? How do you know how much to take?
Posts: 73 | From USA | Registered: Jan 2012
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
No, I just went off abx immediately and switched to Byron White herbs (drops). But you can do them with abx too (I just couldn't take abx anymore). You just need a doc who knows what to do. (felt better on the drops).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Most LLMD's say to just stop antibiotics cold turkey -- it is better to not reduce the dose but to just stop.
But to test whether you still have an infection you can wait for symptoms to get worse or do a challenge with either herbs or drugs.
Hubby came off antibiotics this spring -- he had been on them continuously for 3 years -- the longest stretch since he entered treatment. We knew he was not well but the doc wanted to try to do some testing to see which infections were still present. Tests were a big waste of money except for the phase contrast microscope test results which showed lots of infectious organisms.
Hubby was off meds for 2 months. He is still trying to recover from being blasted with meds and herbs 3 months ago. Within 4 or 5 days of resuming meds he started running daily low grade fevers which still continue. He has gone back on IV antibiotics and multiple herbs and antimalarials and antiparasitic meds. He continues to suffer and has already had 2 ER visits this week.
So my advice would be to go slow on adding in herbs -- whether or not you stop antibiotics or just add the herbs to the protocol.
Personally I think some of the new herbs can be very effective but they work better for some people than for others. Have no personal experience with the Byron White herbs. Hubby has done mostly Buhner herbs.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
The med combo you listed would be very weak for bartonella. many would consider it a weak combo for lyme as well. And it would have almost no effect on babesia.
If she has never treated bartonella then trying some of the herbs more specific for bartonella might be a good place to start -- cryptolepis or sida acuta or HH from Zhang.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You did not say what her coinfection status is. If this has not been considered in her previous treatment, then it should be. I agree with Bea.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
Wow, I'm now learning that she should have had the meds switched up a bit and that it wasn't even probably doing much. So dissapointed, we spent all of that time and money on meds, traveling, etc.
I am thankful for this board and the people who take time out of their day to help others. Thank you all. I am definately going to look into all of these suggestions. Bless you all
Posts: 73 | From USA | Registered: Jan 2012
| IP: Logged |
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!
Printer-friendly view of this topic