I'm new, but incredibly grateful to have found this forum. I just hope someone can help...
My husband went to the dr end of Aug w a bulls-eye rash and flu-like symptoms. He was placed on Doxy for one month.
His flu-like symptoms and rash quickly disappeared. He developed pretty disruptive stomach issues we think are from the Doxy.
At the end of the month they tested him. An ELISA only, I believe, and it was positive.
Our primary, who truly knows NOTHING about Lyme, said he wasn't better (even though we pointed out that our research said he can test positive for a long time and not be sick) and put him back on Doxy indefinitely. She referred us to a specialist and said to continue taking probiotics for the stomach problems.
The specialist can't see him until April (we're on the wait-list, though) and since he's not yet a patient for us to follow whatever our primary says. He's taken 8 wks of Doxy so far.
We're angry and frustrated, and can't find clear answers. I know how fortunate we are that he feels fine except for the upset stomach, I do, but he no longer wishes to take the Doxy. He's scared about the long-term effects of taking it for so long, esp if it's not necessary. And frankly he's tired of running to the restroom. I'm scared what will happen if he stops too soon, though.
So. We're looking for any advice, links, resources to help us? I've searched and searched online and can't seem to find definitive answer for when treatment should be stopped.
Posts: 3 | From NH | Registered: Dec 2014
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
A couple quick thoughts.
Is he taking the probiotics at least 2 hours away from the doxycycline?
Is he taking the doxycycline with food?
-the package insert is WRONG and it needs to be taken in the middle of large meal-
What kind of probiotics is he using?
-he needs to be taking 200 billion units per day. Klaire labs makes a good one called called Factor 6.
Is he taking saccharomyces boulardii?
-this may help with the diarrhea. Nutricology has a cheaper one on amazon.
If your current doctor is open to it, have your husband tested for other infections. Ticks carry more than Lyme.
Here's a thread on what else to test for (get a copy of ALL tests so you can have it for your records and take them to other doctors):
Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment
Try to connect to a support group in your area. Good luck!
Posts: 2839 | From California | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
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- Is his torso staying upright for full half hour (maybe an hour) after taking doxy? This really matters. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your primary doctor knows far more than the average doctor and was absolutely correct for extending treatment with a return positive Elisa.
But, there is still a risk with such a short treatment of ONLY ONE Rx. It needs to be a combination approach. Doxy, alone, can cause chronic lyme because it does not address the cystic form of lyme.
Now, some do just fine with a short course and never go on to develop problems. Many more, though, are not so lucky.
And, with a follow up positive ELISA, that is certainly something to pay attention to as it is showing "active" -- it's a myth that a positive ELISA can show "past" action and not be current.
At first, doxycycline can surely help someone feel better because the active spirochete load is being decreased.
Doxy can kill off some spirochetes but it also forces others into their more protective cyst form where antibiotics can't touch them. An antiprotozoal drug like Flagyl is required, too.
When in hiding, though, they are not active so one would feel better. But they can break open any time and then spew forth many more spirochetes that have been incubating, so to speak in the protective cyst form.
Something to address BIOFILM is also important for treatment to work.
And LIVER SUPPORT is just as important as PROBIOTICS. Liver support should also help prevent some of the Rx side effects.
As for the specialist to which he has been referred, I hope it is to an ILADS doctor, not someone connected with IDSA. Details below. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
How just doxycycline (or other antibiotics, alone) can cause chronic lyme:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A gluten free diet may also help the stomach lining. In some folks, gluten can cause severe irritation of the lining resulting in "leaky gut" - infections or Rx can also irritate the stomach lining.
So, for a while (at least) it may be very helpful to avoid gluten that is in wheat, kamut, spelt, barley or rye. Detail within this set: HIDDEN SOURCES of GLUTEN
Also good for the lining of the stomach: slippery elm powder (as a gruel); marshmallow root; DGL (a kind of licorice). For more detail, just search within this site:
Though not at all about lyme, this is one of the best reference resources on my bookshelf that has wonderful chapters, many graciously available through their website.
The ONE EARTH HERBAL SOURCEBOOK (Tillotson, et.al.)
He is a doctor of Ayurvedic Medicine; She a doctor of Oriental Medicine and Acupuncturist. The third co-author is a doctor of optometry. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
Frequent Contributor (1K+ posts)
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posted
The exact length of time for an early case is not known, and it seems to vary with different people. Two months might be long enough. But I am a bit puzzled about the time frames here. Bitten about three months ago, so somewhere a month seems to be missing. Not on the meds the entire time then, since the bite?
Also, if the tick gave him more than one kind of disease, and that does frequently happen, the same treatment may not cover all the possibilities. On the other hand, when lyme is caught at an early stage, sometimes the immune system takes care of the rest. Or it may not.
You see the problem here? There are no absolute answers for your situation. Those of us who missed the early treatment might err on the side of too long, just to be sure. Most doctors would err on the side of too short.
The stomach troubles could be doxy. Be sure to follow the suggestions in the previous posts about not lying down for an hour after, take with food, and probiotics two hours after every doxy dose.
I think you may have to make some decisions yourself, in view of the uncertainties involved.
Posts: 2888 | From USA | Registered: Mar 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Rather than waiting until April to see a specialist, I suggest you contact the lyme support groups in your state and nearby states. See "Support Groups" on the left side of the page.
Ask them for names of good lyme doctors. Also. give them the name of the specialist your doctor wants you to see. Find out what they know about that doctor.
You want to go to the best lyme doctor you can afford. Expertise is critical with this disease. So, do a lot of asking around and pick a good lyme doctor. Then, follow his advice.
Igenex is a tick-borne disease specialty lab in California. I suggest you get a lyme doctor to test your husband for all of the tick-borne diseases. That includes babesiosis, bartonella, ehrlichia, etc.
Even though testing is not 100% accurate, if you get any positives, they are meaningful.
Also, educate yourself about this disease. Lyme is really more than one disease, and each one requires different treatment.
The best document you can read is the Burrascano Lyme Treatment Guidelines. They can be found at the top of Medical Questions and also here:
This document will give you your education on this disease. It is not an easy read, but well worth it.
The doc is the key to getting rid of this disease. Can't emphasize that enough. So, work on finding a real lyme expert and getting to that person as soon as possible.
You can also post in the "Seeking a Doctor" part of LymeNet and ask for a good doctor there. Then, the folks here can give you names.
Good for you for finding LymeNet! We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From page 19 of Burrascano:
"EARLY LOCALIZED - Single erythema migrans with no constitutional symptoms:
1) Adults: oral therapy- must continue until symptom and sign free for at least one month, with a 6 week minimum.
2) Pregnancy: 1st and 2nd trimesters: I.V. X 30 days then oral X 6 weeks 3rd trimester: Oral therapy X 6+ weeks as above. Any trimester- test for Babesia and Ehrlichia
3) Children: oral therapy for 6+ weeks."
This quote from Burrascano is his recommendation on length of treatment for a person with a bulls-eye rash and absolutely NO OTHER symptoms.
This is NOT your husband's case since he had flu-like symptoms. So, you must move on to the next treatment category which is as follows:
DISSEMINATED DISEASE - Multiple lesions, constitutional symptoms, lymphadenopathy, or any other manifestations of dissemination.
EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment:
1) Adults: oral therapy until no active disease for 4 to 8 weeks (4-6 months typical)
2) Pregnancy: As in localized disease, but treat throughout pregnancy.
3) Children: Oral therapy with duration based upon clinical response." (pages 19-20)
So, as you can see from the above quote, Burrascano is saying to continue treatment until 4 to 8 weeks after the flu-like symptoms or any other lyme symptoms are gone. He is saying that this typically takes 4 to 6 months.
As you can see, the recommendation on how long to treat depends on symptoms. So, be very sure that he has had no other symptoms of lyme other than the flu-like ones. If he has had other symptoms that could possibly be lyme, then pinpoint when they left and take the meds for the required amount of time after the last symptom left.
I agree that the stomach upset is most likely from the doxy. Taking it in the middle of a full meal is the best remedy for that problem, as others have advised you.
And, probiotics will also help the stomach, diarrhea, etc. Read what Burrascano says about them. They are essential.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Brussels
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posted
I hope he is one of the lucky ones that take 2-3 months of doxy and get cured. We were not that fortunate.
Besides, there are coinfections, virtually everyone is infected with one or more coinfections that need treatment.
I don't use abx anymore, not even for new bites. They upset my stomach, and GI tract, and I don't find it effective. But I guess, the wisest thing to do is to try going on abx to be sure they didn't work, otherwise you may regret after.
We know it is not the best way for us, so we don't take abx anymore for new infections. But we tried abx, and we know they are not the best answer for us. But each case is a case.
Posts: 6199 | From Brussels | Registered: Oct 2007
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poppy
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posted
It always bothers me to have oldtimers suggest no abx to newcomers. This is a stage that some people get to after a lot of time. Not everyone comes to this conclusion. I am glad that brussels did say to try abx. Otherwise no abx advice is dangerous for new bites.
TF suggested checking out the lyme specialist with support groups. I did wonder about that at first, but no IDSA type has a waiting list like this, so it is more than likely a legitimate lyme expert. In fact, that is probably a good test to determine lyme knowledge....how long the waiting list is, at least most of the time. No one waits in line a long time to have some IDSA type tell them it is all in their heads or some mystery disease, or not infectious anymore.
Posts: 2888 | From USA | Registered: Mar 2004
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quote:Originally posted by poppy: But I am a bit puzzled about the time frames here. Bitten about three months ago, so somewhere a month seems to be missing. Not on the meds the entire time then, since the bite?
No. Not the entire time.
He went to the dr the last weekend of Aug and began the Doxy September 1st. He was on a 30 day/one month dose.
They then tested him sometime that week after he finished. He was off the Doxy for about 10 days while we waited for the results.
The results came back positive. Our primary told him to go back on it and to book with the specialist.
He began the second 30 day treatment and was given an appt in April with this specialist. (We're in NH.) He finished that treatment, and consulted w our primary again. Told her he wanted off the Doxy because of the side effects. That he couldn't do this until April.
They battled for a while, and he finally filled the prescription last week. But it has been sitting in a cabinet, untouched.
Posts: 3 | From NH | Registered: Dec 2014
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We're lucky in that we have a phenomenal pharmacist who has given us great advice on the Doxy and probiotics, which is exactly the advice you all have given and he followed. It didn't help very much, though.
Not being on it has made a difference, however.
We received a message yesterday that our appt was moved to February thanks to the waitlist. Better, but.
We have a friend who battled Lyme and has been doing well for over a decade, and she referred us to her doctor who is on the Cape. We have a call in to them, but they too warned us we're in for a long wait.
We also contacted a Lyme Clinic in Boston, but we're told they'd call us back as he's symptomless and doesn't quite fit there? (They're protocol seems to be one month treatment and you're done?)
But again, in a nutshell, our primary is clueless and doesn't want to order tests or do anything else but keep prescribing Doxy and only Doxy until we see a specialist. Husband doesn't want to take it.
So, just not sure what to do until then.
Posts: 3 | From NH | Registered: Dec 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did you find out if the doctor for whom he is on the waitlist for (now) Feb. - is he ILADS "minded" or IDSA?
ILADS "minded" is what you want. That can vary in what it means, yet an important starting point.
The Boston clinic does not sound "right" with their "standard one month treatment and you're done" mindset that is clearly IDSA speak that is usually just full of errors.
Talk to the Boston Lyme Support Group first - or any ILADS-minded support groups in the areas you consider. Make sure any group / doctor / clinic is ILADS "minded" as in previous post regarding the differences in IDSA and ILADS.
There are some options. Many who either cannot locate or afford treatment with a LLMD - or maybe tolerate treatment at some points have found options - or support methods to help better tolerate the Rx.
You might see if you / he could find a LL ND near you. Detail below.
First: no aerobic exercise, it can damage the heart in the presence of infection and tax the liver - although gentle & consistent movement exercise / activity is important to keep muscle tone, etc. as best possible. Burrascano's guidelines has detail.
No steroids. Both these things are very important. Detail can be optioned about why in other threads but wanted to be sure these two key points are known.
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) 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, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
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.
Herbal Safety considerations & reference books; etc.
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 with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.) -
[ 12-06-2014, 05:17 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I strongly suggest looking into rife. It can be a bit of a left-field approach yet it has some clear advantages, especially when treatment options are limited.
Topic: RIFE Machine - Reference LINKS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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poppy
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posted
This is your call. If he does not want to continue to treat, then no point in going to a lyme doc. It might be alright. Or the symptoms might kick in soon, or a long time from now when he has forgotten about the tickbite. Just no predicting what will happen if treatment stops now.
Some people switch to doryx when doxy gives them stomach issues. Or ask the doc for minocycline instead. Mino can make some people dizzy. All antibiotics may produce yeast infection. Got to go on low carb diet (no sugar either) and take probiotics.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Get on some wait lists and get him into a true LLMD who will test for co-infections. Test through Igenex. Most likely he has a co-infection of either bartonella or babesia. These take different abx. You treat the lyme first. Also practice safe sex.
He needs to be on 3 different types of abx that treats all 3 forms of the lyme bacteria.
Good luck to you and your family. You have found a great site. Use the search function, it is very useful.
Posts: 160 | From somewhere | Registered: May 2010
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Kudzuslipper
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I suggest taking the guidelines TF listed to your primary care. Since she was pro active she may be willing to switch abx. It add abx. Azythromycin is what I would ask for.
When you get worried about taking abx just remember doxy is what they give teenagers long term for acne and also for periodontal disease... Both far less serious than chronic Lyme.
Posts: 1728 | From USA | Registered: May 2011
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Judie
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posted
Get him to take some kind of antibiotic if you can. Even amoxicillin or ceftin, anything just to keep Lyme in check til he gets to the specialist.
Posts: 2839 | From California | Registered: Jul 2012
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