posted
My ND started me off with doxycycline, artemesinin, and a-bab back in early February. After a month with modest improvement, he stopped the doxy and a-bab. I don't know why he stopped the doxy, but the a-Bab made me feel super wired; intolerable at 1/2 drop per day.
Then he switched me to kw Lyme Formula, another tincture. After 2 weeks I was feeling some good improvement but that wired-cafeine overdose sensation was ever present and worsening until I couldn't stand it any longer.
His recommended solution was more detox and 1g curcumin with 1g.vitamin c. All useless advice. I fired him and await my appt with an ilads trained doc.
In the meantime, I've tried some herbs from the buhner protocol ; red sage and Chinese skullcap, and ashwagandha pills, all gave me the same reaction.
I just don't see how die off and the resulting toxins could flood my system within minutes when abx herxes supposedly take ~24-48 hours after starting a new rx.
The thing is, that I feel this within minutes of taking these herbs. A month of doxycycline at 200 MG bid, and artemesinin 400mg 1xday never produced this or any other adverse reaction. Well, a little upset stomach from the doxy, but tolerable. WTH?
I'm reluctant to keep taking these tinctures because I don't know why I'm having these reactions. I don't want to screw up my adrenals. Neither do I want anymore advice from my ND who appears to be in over his head with Lyme tx.
Anybody had that reaction from herbs or abx? How did you deal with it?
If I had some reassurance it was a harmless reaction, I'd cowboy up. But whenever this happens, I also start losing weight which I really can't afford to lose as I'm already down to 144# when I was 166#, 5'10" before I got sick. Thanks.
posted
I'd stop taking the herbs until the reaction stops. Then I'd start one herb only After a few days, long enough to be sure there is no reaction, then start the next herb. This should help you figure out which herb is causing the trouble.
It seems more like a reaction to the herb than a die off to me. Herbs are stronger than we sometimes give them credit for.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
quote:Originally posted by sixgoofykids: I'd stop taking the herbs until the reaction stops. Then I'd start one herb only After a few days, long enough to be sure there is no reaction, then start the next herb. This should help you figure out which herb is causing the trouble.
It seems more like a reaction to the herb than a die off to me. Herbs are stronger than we sometimes give them credit for.
That's what I've been wondering. A-bab and KW Lyme Formula are both combination tinctures,and give me the same reaction. Red sage and skullcap do it also.
I'm hoping this new doc won't be so rigidly herbal in his approach. I'm ready to try abx beyond doxy as monotherapy.
Posts: 28 | From Norcal | Registered: Apr 2017
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I suggest you ask people on LymeNet about this doctor to get all the info you can on how he treats lyme and what he believes.
You can only post the first letter of his last name and the state he is in. Folks in your area will know who you are talking about.
Robin123 can probably also tell you about him.
Since lyme docs are free to treat lyme however they want (just herbs, low doses of antibiotics, whatever they have found that helps, etc.) it pays to always check out a lyme doc thoroughly before selecting him. Saves lots of money and time. (That first appointment is usually VERY expensive.)
Just being ILADS is not enough. Some docs say that because they know it will attract patients.
Call the office and ask if he prescribes high-dose combinations of antibiotics and if he treats coinfections such as babesiosis with antibiotics.
A two week wait is no wait at all. The top lyme doctors (who have the most expertise at curing people) often are not taking new patients. Most good lyme docs have 3 to 6 month waits.
New lyme patients often make a poor choice for their first lyme doctor. So, learn as much as you can about the lyme specialists in your area. The best is one who sees only lyme patients all day long. This helps them develop more expertise.
And, I suggest you find one who follows Burrascano. Ask around about the docs. If you can find one who has definitely cured at least one person (3 is better), that is the doc you want.
I like docs who follow Burrascano. So, if that is what you want, ask others if your doc follows that protocol. (You can't ask the doctor's office because they will often say "Yes" so that you will become their patient.)
The lyme support groups in your area could provide a lot of info on who is getting folks well. See Support Groups on the left side of the page.
You want to know all you can possibly know about a doc before laying out the big bucks and following his treatment plan. Many doctors treat lyme, but VERY few have ever cured a person of it. Your job is to find one of those few.
The doc is the KEY to getting rid of this disease. I can't emphasize that enough. You can waste a lot of time and money on lyme doctors if you don't do a lot of research in advance.
A true lyme specialist (who treats only lyme disease) will usually have an extensive webpage talking about lyme. Some have written books on the subject.
If the doc's webpage lists 20 medical conditions that he specializes in, that is generally a bad sign. And, anyone who takes insurance is usually not very good.
The initial lyme doc appointment should be at least 1 hour in length as it takes a long interview for the doctor to determine if you have this disease and how to begin treating you.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
quote:Originally posted by TF: And, I suggest you find one who follows Burrascano. Ask around about the docs. If you can find one who has definitely cured at least one person (3 is better), that is the doc you want. Many doctors treat lyme, but VERY few have ever cured a person of it. Your job is to find one of those few.
Yikes TF, that's not so encouraging. I didn't realize the cure rate was so low.
Posts: 28 | From Norcal | Registered: Apr 2017
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The message is that every Tom, Dick, and Harry will say that they treat lyme disease. That is not what you want.
If you can find one of the few doctors who have cured people, then you are in with someone who has the expertise necessary to cure you. You are just starting out, so you should not be a difficult case.
So, I hope you understand that you must choose your doctor wisely. At least half of all lyme patients go out of state for their care and many fly. So, you often MUST travel to get to a doc who has cured people.
There are just a handful of them here on the east coast.
Some states have no lyme doctors at all, and many states have no lyme doctors who follow Burrascano. Only a few brave doctors follow him anymore due to the persecution that comes their way.
Lyme is VERY difficult to cure for an average lyme doctor. You have to get to someone good. People have told me that in their lyme support group they know no one who has been cured.
Meanwhile, I have 5 personal friends who have been cured. They all went to the docs I recommended to them--ones who followed Burrascano and had a record of getting people well.
It takes about 10 years of treating lyme for a really smart doctor to be able to get people well (easy to difficult cases). At first, he may be able to get simple cases well--like people ill for less than a year.
And, then after so many years, the doc may know enough to get easy to medium cases well.
That is why you have to be educated (by STUDYING the Burrascano Guidelines). You have to be able to size up your doctor's expertise in dealing with this very complex disease (which is really many diseases). If you ever determine that the doctor seems to be stumped by your case, or doesn't know what to do, doesn't understand your reaction to his treatment, or is in over his head, it is time to find yourself another doctor.
Also, if you ever feel like you know more than the doctor, it is time to leave. So, I hope you can see that you are going to have to sift through an awful lot of doctors or just go to the one I recommend here on the east coast! Ha.
If you can find a person who knows an expert doctor who is getting many folks well (like Burrascano used to do), then go to that doctor.
I only know the good ones on the east coast.
So, I hope that now you see the work that is ahead of you. You can save yourself years by doing the research on the best docs in your area of the country (meaning the western side of the U.S.). You HAVE to be willing to travel if you want to give yourself the best chance of getting rid of this disease.
I read the article Dr. G. wrote in 2014 and I was not too impressed, sorry to say. But, if you have some really seasoned lyme patients or recovered lyme patients that are telling you he knows how to cure people, then go with that.
Regarding the curing of one or 3 patients. It is difficult to meet someone who can tell you this kind of information. Most people don't know other patients of their doctor, or they don't know many other patients of their doctor. So, it is tough enough to find a person who knows for certain of at least one person the doctor has cured.
People often don't keep in touch when they are cured, or just stop corresponding. So, it is pretty tough to know a person who the doctor has cured. You can take second-hand knowledge if the source is reliable. You can NOT take the doctor's word for it that he has cured people. You HAVE to ask around a lot--and I mean a lot.
This is how you are eventually going to discover the reputation of a doctor.
I have about 7,000 emails from lyme patients, many talking about their docs. I have been helping folks for 13 years. That is how I have amassed all of the patient reports I have on so many doctors in the east.
If you can find someone like that out west to guide you, you would be fortunate.
So, get crackin'!!
p.s. You may want to read an old post of mine entitled "What Makes a Lyme Doc Top Notch." They keep it at the top of Medical Questions, under "Important Info about Lyme and Cos."
This may help you evaluate any lyme doctor you go to. I cannot emphasize enough that if a doctor treats only lyme patients all day long, that is a true lyme specialist. That is generally the doctor you want.
I can give you some names on the east coast, but hopefully, if others in California help you, you will be able to get in with someone much closer.
If the wait is long, you may have to start out with someone lower on the totem pole. You always have to wait, wait, wait for the best doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This is what the website of a true lyme specialist looks like: gingersavely.com
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Thx again tf. So, is the ilads standard of care synonymous with the burrascano protocol?
Posts: 28 | From Norcal | Registered: Apr 2017
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
No.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Look around the ILADS website and see if you can find their guidelines/standard of care document. I searched and I believe this is it:
You can compare this document to Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Doxycycline is an antibiotic, and they interfere with a he reproduction cycle of Lyme or other bacterium. The herx will sometimes be less severe than something that is more in line with an antiseptic which kills outright.
I am not sure of the herbal mechanism for all herbs but it may be a more direct kill.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
| 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