posted
Ok, wonderful fellow-sufferers, I need some help.
Brief background:
I became very ill one day over 2 years ago. It happened suddenly, like a lightswitch flipping, and a room becoming dark. After 8 months and lots of Dr's referring me around, I was diagnosed with lyme by a LLMD. (My specialty ear dr. was the one who suspected it first.)
My worst symptom is dizziness, and I have been constantly dizzy for over 2 years. It is a dizziness that is "stroke-like". The pressure builds in my head, my ears pop, I loose my ability to speak clearly or coherently, and I start loosing track of where I am in time and space. Nose and movement trigger it, but it also cycles. (15-17 days, like clockwork) It NEVER goes away, and I have learned to "deal" on my "good" days. There are a host of other symptoms, but it is the "dizziness" (for lack of a better word) that confine me to bed.
Now, for what I need help with. When I was diagnosed, I started Doxy and Ceftin. I guess my Dr. did not understand quite how sick I had been (it was a "good" time when I saw her.) or how sick I got from the initial herx. It took 2 1/2 months to come out of, even after she took me off the antibiotics 4 weeks in. I was so sick I couldn't sit up for those 2 1/2 months. It was horrible. (As I am sure you know!) Every week she would give me a new "detoxing" thing to try, from herbs to baths to prescriptions, and what FINALLY worked was NAC and alpha liporic acid.
I started biaxin, and then gradually added the ceftin back in. This time there was very little reaction, except for some significant joint pain. (Which had not been a symptom before! ARG!)
Several months later, my dr. said it was time to change antibiotics, so we did it gradually again to prevent a severe reation. This time there was no noticeable reaction. She thought I was "getting" better, but I wondered why I was still so sick, 5-7 days were bad, and then 7-9 days where I was a functional person only to start the cycle all over again, relentlessly, month after month.
Very recently I started taking Oil of Oregano. I had started seeing a natural Dr. at the recommendation of my LLMD, and I am not yet 100% sure she is helping, or knows how to help. But she did have lyme. She had me start the ooo. She wanted me to start with 1 45mg capsule, and increase to 2. My LLMD and I decided to start with 1 every other day, and increase to 1 a day, then to 2.
With 1 every other day, I had SEVERE neck pain (as in, wanting to rip your own neck out pain) for about 2 weeks, and then it still hurt, but not as bad. The natural Dr said it was fine to increase to 1 45mg pill a day.
When I did, I became SEVERELY ill. I was in bed for 9 days, and very sick for more than 2 weeks. Horrible "dizziness". (That word does not encompass the severity of what I feel when so sick!) My mom came to take care of me. Death is not hard to imagine when you feel so terrible.
I stuck it out, and made a gradual recovery once I was able to get out of bed... every other day about half a point better on the functionality scale my Dr. has me grading every day by.
Now... get this. When I went back to see my LLMD, she was EXCITED about how sick I had been. She said I must not have been getting better, but that the latest 2 antibiotics were probably not doing anything. She was EXCITED about the OOO, and she said we should pursue what WAS working. Here is the really horrible part... she said when I had felt "ok" (since I never feel "good"!) for 4-5 days, to increase the OOO dose by 3-4mg! So here I have a sentence of illness, for who-knows-how-many-months ahead of me. But I hoped that the lower dosed increases might mean I did not react as severely or for as long.
I increased the OOO by 3 mg to start. Later that very day I started to feel sicker, and ended mostly in bed for 2 days. (an "8" on the functionality scale instead of the 9/10 I had been with my last, larger increase. 8 is still largely unliveable, however. Her "7" is "symptoms significantly interfere with daily activities", and this was far worse than this because I could harldy CONDUCT any "daily activities"... I just wasn't completely confined to bed like I had been last time.)
For 2 days this went on, and I was not sure if it was a normal downturn with my lyme cycle (though lately they have not been "bad" like this), or if it was, in fact, the OOO. That is, until this morning, when I accidently skipped my dose of OOO without realizing it. I was feeling some better by evening! And then put 2 and 2 together... yes, I did miss my dose, and, yes, that was why I was gradually starting to function again!
Ok, so could you guys who are experienced with lyme PLEASE, please help me? I have 6 kids and a business. Life just falls apart when I am so sick... for 2 years I have been CONTINUALLY trying to catch up, and yet CONTINUALLY getting sick again so that I can not function. It is a terrible place to be stuck in.
How can I find a work-able way to do this?
1. Do you agree with my Dr. that OOO is working, and that we should pursue it? (She has already taken me off antibiotics, after SEVENTEEN MONTHS on them!)
2. I can not live live constantly getting so sick. My Dr. does not even want to make me become so sick that I can't handle it. (My Dr. and the people around me thought that first severe herx for 2 1/2 months could have taken my life.) Should I be shooting for a does that is low enough that it doesn't triger such severe herxes? (Maybe shooting for a "7" and no higher on the functionality scale? My "good" days are "5", which means, "symptoms are present but manageable". I manage them by laying down when the dizziness gets too severe, wearing an ear plug and even a noise-reduction headset to keep the noise out of my left ear... which is the ear that makes me SO sock.) What do you think about doseages? I am so afraid to take my 3mg dose again tomorrow and become ill again for another week. I don't feel like I can take it emotionally... and I really need to get my taxes done!
3. Is it necessary to have a herx to get any better? Could I just shoot for increasing the OOO so gradually that I feel no reaction at all?
4. WHAT IS IT with this oil of oregano that has such a SEVERE, violent effect? I do not understand it. Not only is it the dizziness, but I shake (another of my symptoms), and loose my ability to speak, I can't turn my head and keep a grasp on who I am or where I am in time or space, etc. All from a DROP of oil of oregano that is already diluted down to be only 3 mg??? This is lunacy.
5. Do you all agree with my dr that since the OOO if causing such a reaction in my body, that it is the way to go?
6. Does the fact that it is OOO that is doing this mean anything? Any indication about the type of lyme or co-infections present that are actively causing my dizziness? I have tested negative for every co-infection we have tested for. I do have mycoplasma, possible heavy metal (lead) which we are treating with chelation but which never causes me to feel any differently, and I do not detox well. (Including a MTHFR problem.) My Dr. and natural Dr. are both leaning toward "virus"... but have I really had a virus for TWO FULL YEARS that has taken my life away? If so why did I test positive for lyme and have all of the lyme symptoms? But if it is lyme, why does the ooo have such a profound (horrible) effect?
This is utterly confusing. Thank you for any help or insights you have to offer! I am DESPERATE to get better! I don't want to go down such a difficult road with the OOO if it is not the right direction to take! I also don't want to make myself sicker than I need to be!
I am sorry this is so long. There is too much information to know how to relay it in a short post.
Posts: 60 | From PA | Registered: Jun 2012
| IP: Logged |
posted
Are you controlling your candida and taking probiotics.
For me the candida has been a way bigger demon then the Lyme . I was just about to try OOO!
Now I'm too nervous too :/
-------------------- Good friends are like stars... You don't always see them, but you know they are always there!!! Posts: 362 | From west chester, pa | Registered: Apr 2004
| IP: Logged |
posted
I have not had candida problems. I am taking probiotics.
OOO is a wonderful thing... I have tried to learn more about other's experiences, and it does NOT sound like it does this to most people.
The fact that it makes me so sick makes my Dr. think it is the BEST thing for me! Ha!
Posts: 60 | From PA | Registered: Jun 2012
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Maybe it's doing great stuff and maybe it's just horribly irritating for your body. Seems like this would be a good place to use a doctor who can use "energy testing" (applied kinesiology or some other method), to see if this ooo is really good for you or not.
Posts: 1927 | From se usa | Registered: Mar 2010
| IP: Logged |
posted
The natural Dr. I am working with (who started me on OOO) does kinesiology. I'm still a little unsure if she fully understands the whole lyme issue though. I can ask her when I see her next week if she tested to see if OOO was really a good thing for me.
Note: during my brief reprieve of feeling "better" between these 2 reactions I did feel better than usual. But I feel SO AWFUL during the reactions, and my mind screams "poison" when I take my OOO!
I want to get better, so I'm going to keep taking it... I just want to understand EVERYTHING and do it the best possible way!
Posts: 60 | From PA | Registered: Jun 2012
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I didn't experience benefits for OOO. I did build up to a very high dose. Personally, if some drug/supplement puts me out of commission for several days it's just unacceptable. I can't live like that.
I too started on ceftin and doxy. Eventually we swapped the ceftin out for bicillin shots. This gave me really great progress, I just wasn't progressing on just ceftin and doxy. Just added a cyst buster and that's really helping.
To answer your questions:
1. I think the OOO is doing "something," but it doesn't sound good to me. I wouldn't continue taking it. I would seek out a 3rd opinion. The fact that the first doc passed you on to another doc shows he/she doesn't know how to treat you.
It doesn't sounds like you've been on a good enough combo of antibiotics to treat your symptoms. My doc doesn't believe on keeping you on the same thing if you aren't making progress in a few months.
2. If I were having the reactions you describe from OOO, I would seriously consider another path for treatment. 2 1/2 months of herxing would make me suicidal too. Something is SEVERELY being missed for that to be happening. Either is some methylation issue or OOO is just not the right thing for you.
3. No. Not everyone has a herx. It's not an indication of healing for everyone. It could be your body is just overloaded with biotoxins and can't get them out. Pushing it further can make a person worse.
As for me, I've herxed once, maybe twice when I've started a new antibiotic. It only lasted for a day and felt like bad PMS. Some of the antibiotics I've gotten the most benefit from just make me feel better immediately without a down side.
4. You could be allergic or it could causing such a massive die off, that your body can't keep up. What the OOO is doing to you sounds awful. I thought OOO was mainly for candida. Personally, I found nystatin to very gentle and caused NO side effects at all.
5. I wouldn't go that way, but it's a personal decision. I would get a 3rd opinion.
6. I have several viruses/coninfections too (epstein barr, hhv6, cytomegalo, coxsackie, mycoplasma, etc....). For me, what's FINALLY taking care of the dizziness is a cyst buster which targets Lyme (tinidazole). None of the virus treatments helped with dizziness.
I have problems with astragalus which seems to be in just about every immune tincture out there. It causes me to have an autoimmune reaction. Some supplements just don't agree with a person's body. You have to find what works for you.
Here's a thread I started awhile back on what else to test for. Something is definitely getting missed.
Don't mistake good intention as good medical care.
I saw 4 Lyme doctors til I found the one that worked for me. Some came highly recommended and helped a lot of people, but their protocol just didn't work for me.
By the way, I worked with someone who did kinesiology and tried it for a year and half. Not only was the diagnostics incorrect, but I wound up worse off in the long run.
Who knows, maybe it'll work for you. Applied kinesiology just delayed me getting to the right doctor who could actually help me.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
I just stopped my tinidazole, because there was nothing noticeable when I was taking it. My Dr. was expecting (yet another) reaction and when it didn't come she took me off it.
Part of why I am not sure what to think of the natural Dr is that she suggested the cyst form of the disease was not being addressed. (I have been on grapefruit seed extract the entire time, but this is why my lyme Dr. started the tinidazole, and nothing.
Something doesn't quite make sense there.
My instincts are to find a level of increasing that WORKS, and see if I do feel better and better "in between". (It seems hardly possible after 2 years! But one can hope!)
Note, I did not feel suicidal, it just is not hard to imagine what death feels like when your head is SO messed up like that.
My other thought is that I need to try exercise... so far every thought has been that I have been too sick... but I am 2 years in and I think it is time for strength training and any exercise I can find that I can do without moving my head too much.
I can not afford a 3rd opinion just yet. (That is part of the viciousness of this disease... too sick to work, which equals not enough money to see the Dr's you need to in order to get better! I am hoping more towards the summer I will be able to afford to see another Dr.)
Posts: 60 | From PA | Registered: Jun 2012
| IP: Logged |
posted
My instincts ALSO say that I NEED (need, need) more than 4-5 days of feeling "ok" before increasing the dose if it is going to make me feel sick for 1-2 weeks. I think I will tell my Dr. that, and I think she will understand. (Life falls apart, and it is impossible to "catch up" on everything in 4-5 days, or even to be emotionally ready for the next reaction!)
Posts: 60 | From PA | Registered: Jun 2012
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I agree with Judie that you should get another opinion on this. Nobody should have to suffer days/weeks of misery with debilitating herxes in order to get better. The whole point of choosing herbs instead of ABX is to be gentler on your body while you heal.
From what I understand, oil of oregano works on parasites, fungi, viruses and some bacteria. I wonder if it is going after something that the antibiotics could not touch.
Have you had any past exposure to mold? It can colonize in the ears and sinuses (thus the dizziness?) Also we are learning that parasites are a huge issue for many of us that are not getting well.
Please take good care and be gentle on yourself!
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Either get secind opinion or take much lower dise
My llmd wanted me to.have small herx...if i didnt get it then he upped dose
If i had huge herx he cut it back
A big herx is not always good...your body needs time to get rid of toxins
I wouldnt continue the way you are...not to be an alarmist but ppl have died from herxes
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
My husband needs to take things in a much slower and lower doses than most people do. I don't think it helps you heal, to knock yourself down flat with taking more than your body can handle.
In order to heal, you need to be able feel okay as you go along. Not saying you shouldn't feel any herxes, but if the herx completely flattens you - IT'S TOOOO MUCH - in my opinion!
Hubby is improving even if he's only taking 1 drop of his herbals a day instead of 5 or 10 drops! At his last LLMD appointment he was pleased with hubby's progress. Told him to continue as he is since he's making improvements. (He's treating for 2 1/2 years)
Combo of ABX and herbals first 1 1/2 years, herbals only the past year. He hasn't used OoO, but the cryptolepis knocked him flat at first - he had to dilute the drop in teaspoon of water and use a drop of that!
Now he can take one drop of the crypto - it makes him sick, but its manageable. Crypto days are not good days for him.
Listen to your body. You know yourself better than anyone else!!
Posts: 2252 | From USA | Registered: Aug 2011
| IP: Logged |
posted
My LLMD takes people slowly. He says serious, debilitating herxes can set you back. I would see someone who does muscle testing. Even some better health food stores may do it for free. Might be a good idea to establish a relationship with someone at a good health food store and get muscle tested. Are you pulsing? My LLMD pulses to give your body time to heal from the meds. and herxes and to kill lyme in cycles. I cannot imagine this journey without the weekends off and the 3rd week with no antibiotics. Keep us posted. Good luck!
Posts: 143 | From Pittsburgh | Registered: Jan 2014
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I agree that you should get energy testing done. OOO hits a lot of parasites among other things. I would suspect that parasites are the root cause of your problem.
Please research the baby bottle MMS (CD) protocol that I have posted extensively about. It is something you can start very, very slowly and it kills most things. You would probably have to start with 1 drop in 64 oz of water and dose only an ounce at a time out of that.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Candida...knocked off a few too many all at once did ya?
Candida is NORMALLY present in our body and SERVES A PURPOSE. When it is OVERPRODUCED or mutates or migrated to place where it should not be (vagina, mouth = thrush, eyes, ears, brain (in temporal lobes of those with AD) then we have to hit it.
P.S. That would be REGULAR Sprite, NOT Sprite with artificial sugar i.e., low cal.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
quote:Originally posted by dbpei: Have you had any past exposure to mold? It can colonize in the ears and sinuses (thus the dizziness?) Also we are learning that parasites are a huge issue for many of us that are not getting well.
Ok guys, thank you SO MUCH for all of your thoughtful responses.
I do not think it is candida.
I am really wondering about the MOLD possibility brought up here. I have not looked into that AT all. No Dr's have brought this up yet.
However, as a child, we thought I was quite allergic to mold. I would get very sick from some exposure, and feel bad enough to keep me from "functioning" until I laid down for a couple of hours. It has not been an issue as an adult... or has it?
The thing that REALLY has me thinking about this is that it would explain why the Oil of Oregano is causing this reaction. Oil of Oregano is not supposed to be specifically for lyme. Both of my Dr's are thinking "virus", but maybe it is killing off MOLD that was largely untouched until now? (Which would also explain why my symptoms were also largely untouched.)
Do you think mold could cause symptoms in one ear only? (I have been told Lyme can do that.)
I do not know where or how I may have been exposed to mold (or even "if" I have), but my house is over 100 years old, and the building I work in is also very old. I have to run a dehumidifier in the basement of the building throughout the summer... not sure if there is MOLD, but it gets to damp without the dehumidifier.
Posts: 60 | From PA | Registered: Jun 2012
| IP: Logged |
posted
I have decided to stick with the dose of OOO I have learned to tolerate, which is 45 mg a day, for now. I need to feel "ok" for longer before getting so sick again.
I have also decided to cut the dose of my increase in half the next time I try to add it in. So instead of adding 3 mg, I will add 1.5 mg and see if that makes me sick. If I can stay under an 8 on the functionality scale, I think I can handle it.
If I have been doing stuff for the past 17 months of treatment that isn't really effective, and we finally stumbled on OOO which is actually killing off some things, I want to pursue it, but at a pace that I can tolerate!
At 45 mg a day, I am at least doing something to whatever it is the ooo is hitting!
Posts: 60 | From PA | Registered: Jun 2012
| IP: Logged |
posted
I am not pulsing. How would I pulse with the OOO?
Posts: 60 | From PA | Registered: Jun 2012
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Mama2six, I have problems with only 1 ear too. I have gone almost completely deaf in it and have a lot of ear fullness, ringing, buzzing, heat, tingling, auditory distortions, sometimes pain and many symptoms in my head and jaw. I did have some past exposure to mold, but am living in a mold free environment now.
Recently I tried cholestyramine(CSM) to see if my symptoms would improve, but they did not. This was my LLMD's suggestion as opposed to having expensive testing done. Have you ever tried this? Perhaps you could suggest this to your LLMD and see what she thinks. Some people do really well when they take CSM.
I have never tried oil of oregano and I remember my LLNP suggesting I try it at one point. For some reason, I never did. Maybe I will give it a try!
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
What type of oil of oregano are you taking? Is this a prescription? Never saw oil of oregano in mg.
I have used it for candida and also for infections. I ingest OOO all the time but it is an essential oil I put in a capsule.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm no doc, but here's my two cents. As I started reading your post I thought maybe you had a methylation issue, then later in your post noticed that you did. That makes everything more challenging. You will probably need to go slow with treating things, as your body can only take so much. I would do low doses of everything (JMO).
Tests are just tests. All the lyme and company tests have rather large false negative rates IMO, so you could absolutely be missing some co infections on top of everything else going on. So I agree with Michael, this is where an ART practitioner is beneficial in picking up things that were missed by evidence based medicine.
As far as the OOO, I think it's obviously hitting something. OOO is great for killing yeast. I know you say you don't have it, but most people don't even know yeast is there. Yeast can make anyone dizzy, and give a host of symptoms that are so confusing and difficult for even the best docs to differentiate (lyme like symptoms).
I also agree with Tick battler 100%, you've got parasites (we all do). They are part of this earth, along with viruses, microbes, bacteria. I had severe vertigo, on and off dizziness and more, and parasite treatment got rid of it for me. That said, parasite treatment is an ongoing thing. They just need to be knocked back like we do for our pets.
If I were you, I'd work on parasites. I also think yeast is hiding for you. Again, just my two cents. Here is a link of parasite symptoms (best list I've found but you can use any product you like): https://humaworm.com/symptoms.html
-------------------- --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 |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I don't think it's ever good to herx severely if you have detox/methylation issues. You're already burdening a broken system.
Also, I noticed you're doing chelation. Are you taking binders???
It's possible to chelate too much and too quickly when you have detox/methylation issues.
I'd seriously seek out another practitioner than you who you've been working with. Just my two cents.
Some people need to take 4-5 antibiotics at the same time got get benefits and it's good that you already know of a bunch YOU DON'T have a bad reaction too. It's good that you didn't react badly to tinidazole. A lot of people can't tolerate that.
I'd take your list of meds you tolerate and see another practitioner ASAP.
The first doctor is out of options. No need to go back there. The second one doesn't seem to prescribe antibiotics.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Powdery mildew (mold) hyphae and spores grow on ragweed pollen. There are PICTURES on the internet - they are colorful and really neat!
Rain, which washes pollen out of the air and is so generally welcomed by ragweed allergy suffers, leads to the proliferation of mold, another seasonal allergy trigger.
Those who have ragweed allergies, are worse when it rains and the mold levels go up.
Cantelope, honeydew melon, watermelon and bananas can cause symptoms especially during ragweed season - puts those with ragweed allergies over their tolerance level.
Also, sunflower seeds, chamomile tea, and honey can cause severe symptoms in some people who have ragweed allergy.
Bananas mold quickly and cannot be refrigerated.
Grapes, berries and melons should be avoided because they attract mold.
Between 2005 and 2008 the number of people found to be allergic, or sensitive to, at least one of 11 substances increased nearly 6%.
The number of people who were sensitive to ragweed increased 15% and
the number of people who were sensitive to mold increased 12 %.
SOME people say it is because of global warming, but it is unlikely to be the only explanation.
Some people claim Himalayan Salt Lamps are beneficial (they are not expensive).
BTW...
The science regarding the ability of oregano oil to conquer infections is very clear, showing a very powerful effectiveness against
candida albicans,
aspergillus mold,
vaginal infections, staff (sic) infections, and more.
One study straight from the United States Department of Agriculture even reported that oregano oil presented such a strong antimicrobial effect that it could easily fight Salmonella and E. coli.
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Herxing is not good and puts alot of stress on your body. To be that ill and incapacitated to that point is detrimental to your health and well being.
Sometimes certain meds, supps, herbals etc just don't agree with us and you could actually be experiencing a side effect.
My LLNP recently suggested I try OOO, but strongly advised beginning with only one drop....
You don't need to feel worse to feel better.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Ellen101...DITTO!
Go slow. Knock off a few at a time, otherwise "collateral damage" can happen due to the huge response to clearing all the "debris".
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| 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!
![[Frown]](frown.gif)
Printer-friendly view of this topic