Jordana
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posted
My neuro stuff is outrageous. I got both about 18 months ago and they found nothing but that was 18 months ago. Is it worth doing again to see if I've got damage progressing?
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posted
I don't think they will find much, but that's your decision on how to proceed.
We can feel miserable with no damage done.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
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- I would not do either. While certainly a rough road, nothing you've reported going through is unusual for lyme / TBD. Your LLMD would be the one to guide you were there to be a need for further testing such as this.
I used to feel the same and I wasted time, money and put myself through damage from the very assaultive vibration of the MRI, too.
There are no images or no mechanical tests that are going to be able to capture - to show - the physiological & soft tissue or PROCESSES going on for the most part with lyme / TBD. Sometimes some white matter lesions but, even then, that's pretty much expected and can clear up with proper treatment.
Were there to be certain vestibular issues, a very specific CT scan might be in order but an MRI would not show anything in that regard. And the CT scan would have be ordered in very specific parameters.
Some kind of accepted medical REASON for such tests would have to be verified in order for insurance to cover, though - most likely. They would need some kind of diagnostic code to enter that fits their system.
While on any ototoxic Rx (and even when not even on any), MRI can damage hearing big time - even with ear plugs or the MRI approved metal-free dB rated ear muffs. I will never have another MRI again for that reason, just too vibrationally assaultive.
EKG a very safe and non-assaultive, non-invasive and if your heart rhythm is erratic, that might be considered yet there are still so many factors that an EKG just can't tell us and so much we can figure out in other ways.
(I would never suggest a cardiac stress test, though - for anyone. I do think they pose a risk).
Bottom line: an experienced and well seasoned LLMD is the best to assess need.
As for "diagnostics" - aside from imaging or fancy electronics - a good doctor and most often an ILADS educated LLMD or LL ND is often much better able to assess a situation by what you report, what they see and what they know.
Wisdom, intelligence, proper and full education of all factors involved - & experience - are the best diagnostic tools in my book. -
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Jordana
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Thanks you guys.
What's going on here with these drugs is spectacularly worrying. I couldn't begin to describe all the things going on to any normal person. I wish I could go to the hospital, every day, and have them just DO SOMETHING like on Gray's Anatomy or all those other shows where people get fixed and handled in 60 minutes.
I don't know, maybe I just want attention. I mean I seriously do want attention. Getting medical tests makes me feel at least like something is happening.
What I'm worried about isn't Lyme per se, it's the vasculitis I've obviously got; which actually can cause permanent nerve damage/brain damage.But like you said, they'll show me white matter lesions or something and then what. Another year in the system getting meds that don't work.
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Keebler
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- Lyme causes vasculitis and other TBD can most certainly be connected, too.
As it's normal for a human to need attention, it might best be obtained with therapeutic massage for touch and a LL therapist to help sort out emotional issues. Try to keep connections with those close to you.
If possible, connect with some kind of art that touches your soul, connects you with others and has zero - absolutely zero - to do with lyme.
Even just attending some lecture on art, some lunchtime solo concert, a gallery walk on your own or with a group . . . something to get you out of your routine.
Learning to be alone so much of the time, in all this is really tough, though. Undeniably. It is a Twilight Zone. It helps me to just be firm with myself and with regarding my place in a "parallel universe" - everyone has their own odd feeling about where they are in life, in space. Lyme just makes it all the much more, uh, unusual.
Yet, many others have written about all this so we know it's not odd at all, really, in context. Miserable, still? Oh, yeah. Yet there are ways to work with that, too.
As for the all so very ingrained notion in the modern mind that any medical establishment cares, is competent, can assess and cure . . . well, that's a long shot for any condition.
There is no magician behind the curtain. We have to learn to figure out a lot for ourselves and we can do to a large extent, much of the time. The only way out is through, as "they" say.
You know you have lyme / TBD. The surprises will keep coming for a while as to all that can entail. But each lyme caused issue is not going to be able to be handled as if lyme is not on board.
Your LLMD - or one better equipped for your case - would be who you talk to about specific issues and their connections to lyme / TBD - or other things . . .
or if issues are due to treatment and then how to alter or manage.
If your LLMD has intelligence, wisdom and experience that is where answers are best found. -
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Keebler
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- Back to the concern of vasculitis. Ask your LLMD what in your protocol is addressing that.
Be sure to avoid ibuprofen for it constricts blood vessels.
Find out what culinary support you might enjoy & what kinds of concentrated nutrients might be helpful.
What kind of massage might be helpful. What kinds of gentle exercises or visualization techniques. Qigong is good, for example.
Any concern you have, same approach:
what in protocol is addressing that either directly or indirectly?
and what kinds of nutrients or activity can help? -
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Jordana
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I love all your advice but I'm too sick to do anything but the barest basics. I am *amazed* that I am still walking and talking and can still get downstairs for food and supplements and even filed my taxes. I can answer the telephone and make decisions but beyond that just the survival stuff and preparation for the onslaught at 3 PM.
I've spent the past few weeks in disbelief that I didn't understand my symptoms to be vascular. With all the research I was doing this never occurred to me. The drug regimen I'm on should start to work on it somewhat. Blood thinners, anti-inflammatories. bee venom, vitamins.
It's a serious condition and no doctor is helping me and I'm still in disbelief about that.
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Keebler
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- If you are taking blood thinners, many herbs may be on the "no" list. Be very careful about mixing and matching protocols, many do not mix.
Even if you can't go out, if at all possible, take yourself to Paris - or to the Grand Canyon - via DVDs, etc. Travel shows & DVDs can be a wonderful escape and also a learning experience for brain stimulation. -
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Jordana, I was just reading something the other day about how the bacteria kinda hooks to the endothelial lining of the blood vessels-like they are holding on for dear life.
Sorry I don't remember the exact article, as I was just skimming.
Anywho, I have and still felt the same as you ...I've wondered or even feared that it's "something else". I have so many symptoms right now and couldn't even begin to describe them and exactly how I feel sometimes.
The only advice I can give you is hang in there and when it gets unbearable, back off a bit. There's not much rhyme or reason with these crazy symptoms.
I never find a pattern except for worsening around my menses. I see a lot of your posts and know you do a lot of reading which is great but sometimes you might wanna try taking a break and let your mind relax.
I have found that the more I come online and try to research it can get overwhelming and cause me more frustration and worry. I personally have had this since 1998.
I went 7 years undiagnosed/misdiagnosed. I struggled with treatments after diagnosis, probably because I have a hard time detoxing and also I believe Lyme or Bart affect my gut as they caused me problems before taking a single antibiotic.
I was functioning pretty well the last 7 years and just living life at around 80% and I didn't wake up everyday thinking about Lyme. Now here I am in full relapse after my doctor retired and feel worse than ever. But each day I deal and fight.
We are all in this fight together and it can be very scary because it affects your CNS and brain causing bizarre symptoms. You seem to be a fighter and will get to a point where you feel better.
If I did after being in hell on IV Vanco( to the point where I didn't want to live anymore) and it took me many months to start to rebuild and feel somewhat normal again after coming off that devil of an antibiotic, I got to feeling better.
I was able to find a work from home job as well as go out and do normal things like enjoy the Florida summers- fishing, theme parks, beach, pool, comedy clubs etc.
sorry if I've rambled on too much but I feel your pain as do so many others and when everyday seems the same and out and out sucks, you have to just believe that it won't last forever.
The mental/emotional difficulties can be just as debilitating as physical. And what I've found and still search for daily is giving my mind a break and not thinking about Lyme day in and day out by other means-tv shoes I like, funny videos, playing video games etc.
Anyhow that's the best advice I can give....accept that your current situation won't last forever, and try to do things to laugh , take your mind off of it. Amber
posted
Yes TF, this is actually referring to what I read as well because it was really long lol. Either way, I am thankful and encouraged for any and all research that is being done which mostly comes out of universities. Thank God for them! Also did you read the recent one about the Swiss Connection? It was a type of rikketsia (sp?) that Burgderfor was interested in and they have his old paperwork on it.
-------------------- Ill since 1998 DX 2005 Posts: 93 | From tampa, fl, usa | Registered: Apr 2007
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Jordana
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amberlin thanks so much for your kind words.
Your remission sounds like it was amazing. You'll earn it back in no time I'm sure Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
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- Actually, most of the 'new' snippets that come from universities is nothing new at all to most ILADS LLMDs and many points have been discussed in the ILADS conferences over many years.
As well, much of this has also been discussed by Stephen Buhner in his books where he explains so much about how lyme / TBD work.
Also, to consider is the work on Mycoplasma which can also affect blood vessels. Dr. Garth Nicolson's work, as well as Leslie Taylor, an ND author's article are stellar in this this regard. -
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Jordana
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Thanks Keebler. You've been the voice of calm and sanity for me on many occasions. Boy I had no idea what I was in for when I signed on to this board almost two years ago.
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Tincup
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In this recent "Ask the Expert" post (with pictures) you can see what inflamed/infected blood vessels and nerves can do on the outside surface of the body. Imagine what is happening within...
I know you didn't want to hear me when I kept saying slow it down before... but maybe you can consider this now?
My suggestion is you back off everything for a month and let the toxins clear out. You need to give your body some time, permission and ability to heal before bombarding it again with everything under the sun.
Jordana
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TC I would love to do that.
The problem is that this is the drug regimen for the gram negatives. No pulsing, no backing off. I'm scared to stop based on how I was doing before I started.
I have to get the Ehrlichia out of me at least. It's been about five weeks since I started this. They treat dogs for this for three months.
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bluelyme
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I know i have vasculitis ..either caused from bart or bactrim ...but roids arent a option ..it was a article here where a romainian girl use curcumin and hbot and had a recovery from vascular collapse ...
is there a fuctional doc there ..can he order the iv curcumin for you(civic pharm az ) ..my livedo is half of what it was ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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I would be taking curcumin by the bowlful if it didn't block the action of BVT. I've thought the same thing about steroids; they would probably kill me anyway.
BVT is a pain in more than one way...
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Keebler
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- It may be that bee venom therapy is not working for you but against you. There are some aspects to it that can do that for some people. Some of your symptoms - or the intensity - could be adverse reactions by your body to BVT. -
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Jordana
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You should hear them over there. In BVT world if you do not do BVT YOU WILL DIE. You can't do anything else BUT BVT. You can't stray from the program one iota or YOU WILL DIE. If you do eight stings for a year instead of ten YOU WILL DIE. No herbs. no curcumin, no LDI, no pain medicine,just BVT to "bring the disease acute." Any horrors you experience are due to "bringing the disease acute." And you have to do it religiously for two years or YOU WILL DIE.
I just don't know what to make of all that anymore.
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Keebler
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- Well, [if only BVT and nothing else] you are doing much more than just BVT, so that's a little confusing. As with everything, we cannot assume it's the right approach for each person, ongoing. Each person is different and changes happen that can require a major shift of plan.
Still, the point remains, BVT could be causing adverse effects for your body. It's a possibility that should be seriously considered. That's seems the logical place to start.
The body's reaction to bee venom is an unknown, unstable and uncontrollable factor. -
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Keebler
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Risk Associated with Bee Venom Therapy: A Systematic Review and Meta-Analysis
PLoS One. 2015; 10(5): e0126971 - May 21, 2015
[Five authors from South Korea & China]
Excerpts:
[Results] . . . Through electronic and manual searching, 8,108 potentially relevant articles were identified . . . [after sorting] . . .
Finally, 145 studies, including 20 RCTs, 79 audits and cohort studies, 33 single-case studies, and 13 case series, were included in the review (Fig 1).
Case studies and case series
Thirty-three single-case studies and 13 case series were identified as described in Table 1 [2,7,16–59]. A total of 69 individual isolated cases were reported in 46 papers.
. . . Among the 58 AE cases related to treatment with bee venom only, 30 SRs, 23 SPs, and 5 other cases, including
cough;
headache;
uremia; anorexia;
discoloration of the sclera (the white outer layer of the eyeball);
jaundice; painful cyclic uterine contractions;
severe pain affecting the left shoulder, chest wall, and left arm;
and muscular weakness in the left arm and hand, were reported. . . .
. . . Conclusion - AEs related to BVT are not uncommon . . . .
[Full article at link above, providing additioal detail.]
Of course adverse reactions could go beyond what is reported in the literature search above to involve any body organ, system or function as well.
Likely, there have been some AE that have gone unreported and simply did not show up in a paper. And AE could happen for someone who had previously not experienced such.
As to the common notion that everything is a herxheimer reaction in someone with lyme, that can be a dangerous simplification.
Yet, even with a herxheimer reaction with Bb "die-off" a herx can be dangerous, too. Not a badge of honor to endure a harsh herx. A herx can be fatal, too.
Adverse reactions can happen aside from it being at all related to a herx or die-off of any kind. Not everything is Bb or TBD; not everything is a herxheimer, either.
The body reacts to venom. Period.
And those reactions can vary from person to person, day to day. -
[ 10-16-2016, 04:10 PM: Message edited by: Keebler ]
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Jordana
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A BVT person would say all of those adverse events are pathogen die off. It's impossible to tell if that's true or not.
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Keebler
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- We were typing at the same time. See what I added to post above - the last few paragraphs - anticipating that dangerous oversimplification and assumption. As in not always a herx yet, if so, it can still pose danger if an adverse reaction is harsh.
The body reacts to venom. Period. While some folks do well with that for a good stretch and find help . . . that reaction is always going to be unpredictable & unstable from person to person, time to time.
While that can be said of just about anything we take in (for every action there is a reaction - or several and that the body can change in its "acceptance" of anything),
since you are doing BVT and you report such a terrible ordeal, is just makes sense to review all the variables and consider all possible adverse effects that your body might be experiencing from external factors. -
[ 10-16-2016, 05:03 PM: Message edited by: Keebler ]
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posted
I believe in keeping the protocol as simple as possible.
I never did BVT, so am not an expert on it, but I am certainly not dead from not doing it, either.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10185 | From Illinois | Registered: Aug 2004
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Keebler
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- Not sure of the source of the bee venom, yet one thing that might be considered is that many bees carry on (perhaps take into) their bodies various farm chemicals. Might that get into their venom?
Perhaps your source is certified organic yet it's a question to ask - where have the bees that supplied the venom been?
. . . A new study is the first to systematically assess multiple pesticides that accumulate within bee colonies. The researchers found that the number of different pesticides within a colony—regardless of dose—closely correlates with colony death.
The results also suggest that some fungicides, often regarded as safe for bees, correlate with high rates of colony deaths. The study appeared online September 15, 2016, in the journal Scientific Reports.
"Our results fly in the face of one of the basic tenets of toxicology: that the dose makes the poison," said Dennis vanEngelsdorp, an assistant professor of entomology at UMD and senior author on the study.
"We found that the number of different compounds was highly predictive of colony death, which suggests that the addition of more compounds somehow overwhelms the bees' ability to detoxify themselves."
The researchers followed 91 honey bee colonies . . . .
. . .A total of 93 different pesticide compounds found their way into the colonies over the course of the season, accumulating in the wax, in processed pollen known as bee bread and in the bodies of nurse bees . . . .
. . . "We were surprised to find such an abundance of fungicides inside the hives . . ." . . . . -
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Keebler
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- While the venom might [?] have some components extracted [such as if they can isolate just the Adolapin], if not and it's a full meal deal, some things to consider here:
Honeybees and AHBs [Hymenoptera Envenomation Bees]
Excerpts:
. . . Melittin is the major component of honeybee and AHB venom. It accounts for 50% of the venom's volume and is the major pain-inducing compound.
It is theorized that melittin causes neurotoxicity by acting as a molecular mimic of an immunodominant peptide which induces an acute disseminated encephalomyelitis.
Melittin, with the aid of phospholipase A2 (PLA2), inserts itself into the phospholipid layer of cell membranes, induces skeletal muscle necrosis, disrupts the vascular endothelium, and causes the breakdown of red blood cells, leukocytes, and platelets.
Other venom components include the major allergen PLA2, hyaluronidase, and mast-cell degranulating protein.5,6,9,15-17
Hyaluronidase is a secondary allergen known as a "spreading factor" because it causes the breakdown of connective tissue and increases the uptake and spread of melittin and PLA2. . . .
. . . Apamin, another bee venom peptide, is a neurotoxin that primarily affects the spinal cord.
Adolapin is a recently-described bee venom peptide and has anti-inflammatory effects. Adolapin may explain why apitherapy seems to be effective in treating some forms of arthritis.3, 20
Mast-cell degranulation protein makes up about 2% of honeybee venom and causes mast cells to break down, releasing histamine.
Honeybee venom itself also contains small amounts of histamine. The exogenous and endogenous histamine contribute to localized inflammation and increased venom absorption.6,8 . . . . -
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Mast-cell degranulation protein makes up about 2% of honeybee venom and causes mast cells to break down, releasing histamine.
Honeybee venom itself also contains small amounts of histamine. The exogenous and endogenous histamine contribute to localized inflammation and increased venom absorption.6,8 . . . . -
- Oh man. I would be SICK with that.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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WPinVA
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quote:Originally posted by Jordana: You should hear them over there. In BVT world if you do not do BVT YOU WILL DIE. You can't do anything else BUT BVT. You can't stray from the program one iota or YOU WILL DIE. If you do eight stings for a year instead of ten YOU WILL DIE. No herbs. no curcumin, no LDI, no pain medicine,just BVT to "bring the disease acute." Any horrors you experience are due to "bringing the disease acute." And you have to do it religiously for two years or YOU WILL DIE.
I just don't know what to make of all that anymore.
I don't know what to make of it either, except that I have personally come to be VERY skeptical of claims that there is only one right way to heal. Look at this board - people have gotten well in a variety of ways. What has worked for one doesn't work for another. All we can do is remain open-minded and try.
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Jordana
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Agreed you really do have to try these things and see. I remember in the summer reporting no symptoms at all except a very stiff neck on pulsed abx and herbs. Normal strength, a few herxes; it wasn't bad.
Then I stopped all abx and did BVT only and by the time I went to see my LLMD I was nearly too weak to sit upright in a chair.
Was I "bringing the disease acute"? Or just circling the drain? I'm not interesting in finding out by trying that again soon.
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MichaelTampa
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Indeed many have done BVT and are not dead.
I would suggest you consider finding a doctor who can energy test the BVT, and perhaps other treatments, to see what really is good for you.
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Jordana
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Don't get me wrong Michael -- I'm still doing BVT. I believe in it for a lot of reasons. My experience is that it brings up a herx just like any other type of therapy.
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Keebler
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- " . . . I stopped all abx and did BVT only and by the time I went to see my LLMD I was nearly too weak to sit upright in a chair." (end quote).
This raises the question as to if BVT is too harsh for your body as you say when you did ONLY that, you lost so much function. That's certainly not a good sign. -
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Jordana
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See they would say that it was the disease becoming acute and I would have to ride it out.
I'm still like this btw; can't sit up for very long, long starey afternoons...riding it out...
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Keebler
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- "they" ? - if you keep listening to what "they" say you could continue in a very bad place and perhaps even find yourself worse.
Please consider all aspects - and never rely on just one source, one doctrine, for making any decisions.
Of the variables to consider with every approach (and, yes, that includes the disease itself),
it simply has to be considered that the approach, itself, might be doing damage - that it might not be the right approach for you at all in any way -- or that something about it requires a serious overall or slowdown.
Often, one approach is stopped for some time, take a vacation away from it to see if that changes anything.
There are various ways to address and most have to rotate, drop this or that and/or add other things.
Sometimes, brief vacations are good, too. Stop all and just take in excellent food and nutrients for a brief window for a fresh start and to see more clearly. Have a gentle "direct" player at the ready just in case but it's really good to sometimes just take a break. -
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Jordana
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I hear what you're saying Keebler.
Only now, I am in the trap. With the abx there can be no pulsing or it won't work; with the bvt -- well if I get worse when off of BVT what does it mean?
I've only been on abx this way for five weeks. The first couple of weeks especially were terrifying. All my symptoms are different now, deeper somehow.
I really have the feeling I could make it all stop ( at least the scariest parts -- nerve sensations, odd weakness, neurogenic bladder, vertigo, feeling like every time I move my body I'm on a waterbed) if I stopped mino and rifampin. There's still a chance I really am just herxing.
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Keebler
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- You already got worse (than you were before you started) with just BVT, nothing else. So, that's something to pay attention to.
You might get better if BVT is stopped for a while. If you continue with the antibiotics and liver support, my bet is that you likely won't get worse if you just take a good solid break from BVT, you could see some relief.
You say the abx you are on cannot be pulsed yet there is always a way to take a short break if one is in dire straights and their body needs a short break. Others with experience in this are best to discuss this with, though. And some LLMDs have more experience with rotation / pulsing than others.
Please never think any plan is so written in stone that there is no room for shifting when needed.
Still, of course, minocycline and rifampin are a power duo. First, though, it seems easier to stop the BVT for a vacation from that and just see what happens.
Also, with mino, it's just expected that is going to have properties that cause unease and nothing to do with a herxheimer, even. It's the ototoxic nature of it so be sure your liver / kidney support is excellent - yet also not too harsh or "event" detox oriented. Sturdy, consistent is best.
rifampin is another many report as a whirlwind (though I've not taken it, I have been on mino and just could not tolerate it at all. Some can; some cannot). So, whatever self care with rifampin, just be sure that's covered.
As you consider variables, since BVT caused you so much trouble even by itself, it seems logical to see how you might do without it.
You're not going to be able to join the NASA team for the next ISS assignment yet, there may be some good indication from a BVT vacation. -
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