This is my first post. My wife had EM rash when 9 years old in NYC and is now 37. After years of suffering I ordered Igenex tests for her, and, according to our local LLMD had a positive result even though it was CDC negative/indeterminate.
Her doctor ordered several more labs which came back positive for Babesia Duncani, Bart Henselae, Bart Quintana, and significant Biofilm communities from Fry Labs.
So, she was started on Azithromycin 250 a day and Tindamax 250 a day. She began feeling better for 10 days and then went down hill fast. She's having serious weakness, fatigue, and has been bedridden for weeks.
Since the positive Babesia test her doc gave her Mepron and Coartem, but only wanted her to do a 1 day trial of each to see how she reacted. She also completed a 2-day trial each of HepaPro's Artemisia and Allicin.
Here's my question... Has anybody else been put on short trials like this to see how their body reacts? After some research I feel like it would take several days at minimum before she would feel anything either way.
Also, has anyone tried just the Dr. Zhang protocols, or the Cordyceps to battle the fatigue? Sorry for the length of this message, and thanks for any information you can provide.
(breaking up the post for easier reading for many here)
[ 05-06-2017, 05:46 PM: Message edited by: Robin123 ]
Posted by Christopher J (Member # 46401) on :
My opinion on this is that trials are unnecessary for anything other than determining if you are just plain allergic to a drug. Most people arent.
As far as symptoms flaring after starting treatment, get used to it and its a good sign. The Lyme goes through growth phases which might be weeks after starting therapy and itll feel worse when the antibiotics hit it then. Herxes etc.
As tough as it sounds, ignore the flares and symptoms and keep pounding away. Over long periods of time of combo antibiotics, youll have less and less of a reaction.
Oh and just a side note, if she tested positive for all of those, your antibiotic regimen is way too weak.
Zithromax should be a minimum of 500 mg a day. Tindamax is usually 500 twice a day. If you want to get serious on treating her you need those and other antibiotics phased in in combos.
Amoxicillin can be added, Bactrim as well. Just 250 of Zithromax is insufficient since Zith isnt a primary Lyme killer.
(breaking up the post for easier reading for many here)
[ 05-06-2017, 05:47 PM: Message edited by: Robin123 ]
Posted by GlassMaster (Member # 50269) on :
Christopher: Thanks for your input and for sharing your experience. I'll step up her treatment as soon as I can convince her it's in her best interest to do so.
I feel she's putting to much faith in her treating doc and downplaying all the information I've learned from many books and forums that I've spent time studying. Its a battle worth fighting. Thanks again.
(breaking up the paragraph for easier reading for many here)
[ 05-06-2017, 05:48 PM: Message edited by: Robin123 ]
Posted by jory (Member # 50029) on :
I might be off on this one, but since starting antibiotics just over a week ago my energy levels bottomed out. Stewed spinach with cottage cheese has been my lifesaver, one meal and bam I'm Popeye the Sailor Man.
Jory
ps: I have no relation to the seller in any way, just passing this really useful tip on..
**edited info on meals being sold**
[ 05-05-2017, 11:17 PM: Message edited by: Lymetoo ]
Posted by TF (Member # 14183) on :
I know a person who has a 4 year old child being treated for lyme and coinfections by the #2 lyme doctor in the eastern U.S. (and perhaps the #2 lyme doc in all the U.S. and the world).
When the doc adds a new med, if the child reacts too strongly, the doc stops the med. Then, sometime later, they try it again. If the same reaction, they try a similar med.
They are going very slowly this way with this child who was born with lyme and coinfections.
For example, here is part of the mother's report:
"In January we tried to add flagyl, but he reacted too strongly to it, both lyme and babs sx. We tried tindamax, but it was just as bad so we waited.
We have recently restarted the tinidazole. We are to be working up to a 200 mg dose BID two weeks on/two off. Right now he's tolerating 100 mg once a week. Dr. S is wonderful in advising us to go as slow as possible."
[end of patient report]
This child is making wonderful progress according to the mother, so I believe you can use this report as an example of how a great lyme doctor will treat a patient who is having difficulty handling the full treatment that is ideally given.
This is not the only report I have from patients who are having difficulty handling medications.
I know that other good lyme docs will also modify their normal protocol and start off with tiny doses or once per week doses, etc. to help the patient deal with the treatment.
After all, the goal is not to kill the patient!
That being said, it is true that you need to expect flares or herxes as you treat. You have to gauge what the patient can tolerate. Feeling sick during flares or herxes is to be expected.
However, feeling at death's door is not necessary. Being unbearably sick should not be tolerated for too long. And, some symptoms indicate a need to stop the med right away.
So, your wife needs to rate her suffering, if you will. The longer it takes her to tolerate full-dose therapy (such as the dosages you see in the Burrascano Guidelines), then the longer it will most likely take for her to feel well.
BUT, if she gets too sick from treatment, you are required to stop the treatment. You stop it until she feels better, then try again at a lower dose and see what happens. You work up to the ideal dose.
Everyone is different. There are those who cannot detoxify well. I have heard that this is approximately 25% of all lyme patients.
If your wife has the gene that makes it difficult for her to detoxify, then she is going to need lots of help from her doctor to be able to detoxify.
Detoxifying is essential for her to be able to handle the therapy. Getting extremely sick right away with appropriate meds is a good sign that the patient cannot detoxify.
In that case, the doc can prescribe IV glutathione or glut suppositories. Also, the patient must be instructed in the various detox methods and must do them religiously--
drink water with fresh lemons squeezed into it constantly, take Alka Seltzer Gold with fresh lemon squeezed into it 4 times per day, etc. etc.
Some swear by coffee enemas.
Dr. H. says that the Alka Seltzer makes nearly everyone feel better. Here is a quote:
"For Herxheimer reactions: 2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg of oral liposomal glutathione.
70% will feel better in hours ."
Glutathione opens up the body's detox pathways. Lemons are natural cleansers of the body, and water flushes out all the poisons that dead germs emit.
Believe me, it does not take several days at a minimum for certain people to react to these meds. Some react very quickly.
Plus, once you have had a bad reaction (even if it took 3 days of taking a new med for the bad reaction to occur), you do not want to keep repeating that.
You lower the dose or take that med once per week, or what ever it takes for the patient to be able to handle the reaction the body has to that med.
It is NO FUN going through this. It is horrible. So, slow and easy and lots and lots of detox may be the key for your wife's recovery.
The doc is the key. Can't emphasize that enough. You need to have a doctor with enough expertise to figure out how to treat your wife's reaction to the various meds.
Sorry to say but the indescribable fatigue that a lyme patient suffers is often the last symptom to go.
Let us know if we can help you further. Good for you for researching all of this for your wife. An educated advocate gives her the best chance of getting well.
If you have not yet done so, I suggest you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
Here is a quote about flares or Herxheimer reactions to appropriate treatment:
"Several days after the onset of appropriate antibiotic therapy, symptoms often flare due to lysis of the spirochetes with release of increased amount of antigenic material and possibly bacterial toxins.
This is referred to as a Jarisch Herxheimer-like reaction. Because it takes 48 to 72 hours of therapy to initiate bacterial killing, the Herxheimer reaction is therefore delayed. This is unlike syphilis, in which these reactions can occur within hours." (page 17)
Notice that with syphilis, a patient can react to the treatment within hours. I have had lyme patients tell me the same thing!
And certainly within 2-3 days most patients will react to the meds with a flare or herx. So, it doesn't take long at all to react negatively to the treatment.
This is normal. But, let your wife communicate if it is unbearable or goes on way too long. She should be given treatment that her body can tolerate.
(breaking up text for easier reading for many here)
[ 05-06-2017, 05:51 PM: Message edited by: Robin123 ]
Posted by MannaMe (Member # 33330) on :
I second TF's advice.
Posted by Tincup (Member # 5829) on :
Herxes can kill. Period.
No one here knows the full history and all factors involved. Advise must be a suggestion to check with a doctor, not "you need to do this and that."
Anyone pushing anyone else to have higher doses for any patient they best put a warning along with it that they are NOT a doctor and to follow the doctor's advise.
Again, HERXES CAN KILL.
Posted by GlassMaster (Member # 50269) on :
TinCup: As much as I feel you're advise is 100% correct- those here who are not medical professionals should not be giving dosing directions-
the reason I made this post was to get a general sense from the community what kinds of things to expect here at the very beginning of treatment.
As far as Herxheimer rxn's being able to kill- I believe that to be true. As predicted, after the fourth week of fairly conservative treatment her symptoms drastically worsened.
She was having consistent tingling and burning in her extremities, pain in her hands and feet, increased floaters and worsening vision...
and the worst in my opinion were unrelenting hand and finger tremors. (These mostly stopped after discontinuation of antibiotics.)
I'm afraid she was not only Herxing, but having neurological symtoms from med toxicity.
Anyway, we have an appointment with her dox this week and will probably resume a less aggressive protocol. Thanks for your thoughts and experience.
(breaking up the post for easier reading for many here)
[ 05-06-2017, 05:54 PM: Message edited by: Robin123 ]
Posted by Brussels (Member # 13480) on :
I never could stand normal dosages not EVEN of herbs.
I would collapse, due to bad herxheimer and toxins.
People improve on low dosages too (look into Buhner's comments, after he wrote his first books on lyme).
He has seen many people improve on low dosages too (like myself).
No need to treat aggressively, in case she over reacts. That is only my opinion and own experience. I had NO other choice, anyway.
I also think herxes can kill. IF you feel what I felt, it's clear these herxes can kill as so many people are sent to ER after taking aggressive treatments.
The heart goes bananas, the ANS doesn't know what to do, you may get whole body paralysis, start having literal nightmares with eyes open, the worse migranes you ever had in your life...
As much as antimicrobials are needed, detox support is a must. My opinion.
Few here are MDs. Just read for information, but don't take any of our posts too seriously.
Many of our MDs are as lost as us, patients, though.
Fortunately, many get healed, despite all odds.
Posted by TF (Member # 14183) on :
I really believe your wife is having difficulty detoxifying and needs to get very aggressive in that area. Ask the doc for IV glutathione.
You can administer this to her at home.
Here are more tips from the great Dr. H. regarding detoxifying:
From Dr. H. patient, Sept, 2013:
Flare protocol in a nutshell:
Try 1st: --Burbur, 10 drops every 10 minutes for 2-3 hours or 10 days until flare resolves --Parsley (same as burbur) --Lemon/lime in H2O sipped through straw 4x/day --Alkaseltzer gold OTC or sodium bicarb 4x/day
If above doesn't help, add:
Oral glutathione (Essential Pro) 6-8 caps at once, repeat as needed, up to 3x/day
If no help w/above steps, try: --Pekana drainage 15 drops of each bottle 3x/day --Sydetox 15 drops 2x/day --LDN, as prescribed at bedtime
Herxheimer reaction (from 2010 Lyme Conference, Dr. H):
Take-home message: DETOXIFY YOUR LYME PATIENTS!
It does NOT matter what antibiotic you give people, they will NOT get better without detoxification
Here is a YouTube video I found that shows a kid self-administering a glut IV push.
If this significantly helps your wife, she may want to learn to do this herself so she can do it even if you are not there.
So sorry she is feeling so poorly. This can all turn around once the problem is properly diagnosed.
Posted by Robin123 (Member # 9197) on :
Good discussion.
Posters, please remember to break up your paragraphs into no more than 4 lines max, as we have people here who can only read short blocks of text.
Thanks for your attention to this matter!
Posted by HW88 (Member # 48309) on :
I used IV glutathione for a bit and really felt it kept my liver in check.
detoxing has been hard for me too.
Posted by Christopher J (Member # 46401) on :
I have to disagree. Herxes will not kill you. If its ever happened its a miniscule miniscule percentage probably caused by something else like allergy. If youre not allergic to a drug, and youll pretty much know right away, the herxes, while they seem horribly bad at first, are a sign that its working. I stand by my previous post because 1) Her doses were too low for the extent of the disease and 2) I've been through this more times than most. Stopping and starting will never work. What will happen is if you just keep at it with the same dose over time, you will just feel herxes less and less.
Posted by willbeatthis (Member # 31111) on :
I second TF. Having dealt with this for nearly 9 years directly after being bitten, I strongly suggest you are able to attain the best care for your wife possible. It will save you money in the long run and you won't have to second guess treatment plans. If you need a recommendation, we are all happy to make them. I finally got in with Dr. H in 2010 and it's the single best thing I've done. There is no doubt that the level of infection that is present in your wife's body after this many years leads me only to supporting TFs suggestion. No one here is remotely qualified to guide a regimen for her. With great care- she will be on her way to wellness. Godspeed.
Posted by HW88 (Member # 48309) on :
I third TF. Also, I've learned that the 'right' dose for one person may not be the 'right' dose for another.
I've ALWAYS had to work my way up and on one, I couldn't ever get it as high as my Dr. wanted.
BUT, I've found a combination of drugs that I feel are helping me. When I feel like I've plateaued, I will change drugs and continue the fight.
I Don't think any of us can say your dose is too high or too low because we are not you. We don't know your exact body make up.
Work with a good LLMD and they will get the doses right for you.
Posted by GlassMaster (Member # 50269) on :
Thanks to all who have joined and added to the discussion, and for taking the time to share your experiences with us.
The advice that we have received has been first rate, and we are looking into all possible holistic and conventional remedies that have been suggested.
I'd like to give an update on her status, but have been so overwhelmed that I havent had the time to do so. I will try to post responses to your messages and give some more information tomorrow at some point.
I dont want any of you to feel that I'm not reading your posts, or that I don't appreciate all of you. More tomorrow.