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» LymeNet Flash » Questions and Discussion » Medical Questions » Help! Do I have Lyme and Need to Treat? Test Results Inside

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Author Topic: Help! Do I have Lyme and Need to Treat? Test Results Inside
ram2390
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igm/igg below:
IGM:

IGENEX NEGATIVE

CDC/NYS NEGATIVE

18+

31 IND

39 IND

41 +++

IGG:

IGENEX POSITIVE

CDC/NYS NEGATIVE

28+

39+

41+++

58+

IFA RESULT BURGDORFERI: 40 [EQUIVOCAL]

BARTONELLA FISH RNA: NEGATIVE

BABESIA FISH RNA: POSITIVE

E. CHAFEENSIS IGM: <20

E. CHAFEENSIS IGG: 160

B. MICROTI IGG: <40

B. MICROTI IGM: 40

BERGDORFERI PCR: NEGATIVE

Ok guys hopefully you can help me make sense of this. We did have a tick infection in our home in August 2013 and I got flu like symptoms 2 weeks later after we treated the house. I don't remember a bite or rash though.

Around that time I also started waking up after 1-2 hrs of sleep, which has never happened before. I am asthmatic and take an inhaled corticosteroid, but my asthma is very mild. When I stopped taking Advair, I always had sleep disturbance, and when I went back on the Advair, no more sleep disturbance.

In the summer of 2014 I went off Advair again and got the mid-night awakeneings again followed by H Pylori and Gut Dysbiosis after treating the H Pylori with antibiotics. I'm a mess ever since.

In November 2014, after taking Tetracycline and Metronidazole for H Pylori, I developed a nonstop muscle twitch in my bicep. That lasted for 3 days then went away. In January 2015, after going back on Advair to help me sleep again, I developed muscle twitches in my legs and arms that come and go every 10-20 seconds when the muscle is at rest.

I also got the Spectracell Micronutrient Test at the White Blood Cell level and I am low in B12, B5, Folate and Choline. All else is normal.

Help! Do I need to be treated for Lyme and Babesia and Chafeensis?? My only symptoms at this point are the sleep disturbance and muscle twitches. I suspect I was infected back in August 2013 but cant be sure.

Is there hope for curing me? I'm especially scared of the co-infections like Chafeensis which can kill and blind?!. Is it of any benefit that I caught this about 18 months after I suspect I was infected and that I'm young? Need some re-assurance here!! Thanks!

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Robin123
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Hi and welcome to Lymenet! Yes, you have positive Lyme bands. Re your IgG, did you mean the 28 one to be the 18 band?

And yes, you need to see an LLMD. There is hope as long as you start to treat!

Sleep disturbance happens early on and muscle twitches are a typical sign of low magnesium, as the Lyme bacteria use up our magnesium. You will need to take magnesium and there are a couple different kinds.

People who know more than I do about interpreting the E. Chaffeensis test results will be along soon. That stands for the Ehrlichia co-infection.

You can make a post for a referral in Seeking A Doctor - put TX in the heading - and people will respond.

Treatment falls in three categories: kill/deter the organisms, detox and fortify the body. Medical Questions has some good stickies at the top that you can read through, including interpretation of the bands.

You can also use the Search function at the top of the page to type in any word or phrase and archived threads will come up. Just know we're all different in what we respond to. You will learn a lot about what to do, just be patient with the process.

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Lymetoo
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Yes, a positive is a positive is a positive. Ehrlichia most definitely needs to be treated right away.

Make sure you are getting enough magnesium in your diet or supplementation. Mag Oxide is not the one you want. Get glycinate or malate for better absorption. That will help your twitches.

Lots of information here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

--------------------
--Lymetutu--
Opinions, not medical advice!

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ram2390
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Thanks for the replies guys.

I read this on another site:

With proper treatment, Ehrlichia chaffeensis and Anaplasma phagocytophilum can be completely eliminated from the body. In fact, even without antibiotic treatment, the disease typically clears within one month in patients with healthy immune systems (Note: this is unlikely if the person also has Lyme Disease and other co-infections). The body does retain antibodies against Ehrlichia after the infection is gone. While the antibodies aren’t very helpful at preventing a second infection, they may influence subsequent tests.

Look at my IGM- its less than 20 for Chafeensis, and 160 for IGG.

I do remember bad flu like symptom 2 weeks after exposure; then I felt great! In fact I did bodybuilding with cardio and weights for a year after that and felt fine the entire time! Is it possible my immune system quickly destroyed the infection in 2-3 days and the high IGG is simply the past antibodies from 2013?

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t9im
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Hi Ram:

I would take a course of Doxy just to be on the safe side as regards Ehrlichia.

Unfortunately it also looks like you have "exposure" to borrelia with a positive babesia test.

If you have sleep anxiety, night sweats, difficulty obtaining full breaths (try hopping 15 feet to see) they are quick symptoms of babesia.

Do you have any stretch mark rashes? If so they would be a sign of bartonella.

You do need to see a Lyme MD.

Good luck.

--------------------
Tim

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ram2390
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Hi Tim.

I do not have night sweats. Ever. I just wake up in my sleep after a few hours. Wide awake. I can take full breaths just fine- after my flu symptoms passed in August 2013, when we had ticks in our house, I did bodybuilding and intense running for over a year! I was fine.

No stretch mark rashes.

This is so confusing. I don't want to take treatment only to discover it made me worse somehow i.e. destroying my good stomach bacteria, etc.

I'm struggling to find out if my twitches and insomnia are from my corticosteroid (Advair)i.e. adrenal stress or some kind of Lyme infection.

I have no other Lyme symptoms. Just sleep disturbance and muscle twitches all over. My twitches started actually 3 weeks after taking Flagyl for H Pylori infection...

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'Kete-tracker
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18+ ??
Detection of an antibody of this size (length) suggests Lyme.
18 kDa (kilodaltons) correspnds the "head" of the Lyme spirochete. It is "Lyme-specific".

More precisely, the front portion of the 'kete breaks off when it dies (or is "lysed") & stimulates your immune system to generate antibodies that are 18 kDa in weight or "size".

Any LLMD worth their salt will diagnose you as having been exposed to borrelia Burgdorferi (the causitive agent of Lyme disease) in the recent past (like the last few months).
Why?
IgM antibodies are "fresh" & haven't "converted" to IgG antibodies yet. (see "Dr. B's guidelines" on Western blots.)

If you have symptoms of Lyme disease, it's *highly* likely you "have" Lyme.

But remember... it's a clinical diagnosis.
There ARE no accurate tests for Lyme disease... yet.
The standard E.L.I.S.A.-based test is 50% accurate at best. Might as well flip a coin.
It was INTENDED for tracking the disease by "counting" cases state by state... NOT a way to confirm Lyme.

IF your doc says you don't have Lyme, YOU NEED TO SEE ANOTHER DOCTOR (preferably an L.L.M.D. or Lyme-literate M.D.) as you NEED to be on antibiotics Now & not later.

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Lymetoo
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quote:
Originally posted by ram2390:


I'm struggling to find out if my twitches and insomnia are from my corticosteroid (Advair)i.e. adrenal stress or some kind of Lyme infection.

I have no other Lyme symptoms. Just sleep disturbance and muscle twitches all over. My twitches started actually 3 weeks after taking Flagyl for H Pylori infection...

-

The flagyl may have activated the dormant Lyme that your body has been keeping contained. When you took the flagyl, it started killing things.

Flagyl can also cause problems with nerves, so keep that in mind.

If it were ME .. I would definitely treat the Lyme. And I would buy some magnesium glycinate ASAP to see if it would help the twitches.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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Re: corticosteroids

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
-

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Keebler
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As LymeToo mentions, magnesium is important for so many reasons. Also very important to you: the symptoms for which you take corticosteroids may be eased by magnesium. Of course if you plan to go off of any steroids, it's best to have a LLMD to guide how that is to be done.

But, so often, there are so many safer ways to approach symptoms than steroids. For matters of lungs, inflammation is often involved and (in addition to infections) gluten & dairy issues can also be connected as they can cause inflammation.

Magnesium is just one thing that can help ease inflammation. And it also can help ease spasms of various kinds, whether having to do with breathing or other matters.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set
-

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Keebler
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Understandably, your concern about antibiotics' influence on good stomach bacteria is valid.

However, lyme / ehrlichia / TBD are far more dangerous if left untreated.

There are many ways to address these TBD (tick borne infections) and I assure you that no good LLMD or LL ND is about to just prescribe antibiotics without also suggesting excellent support methods and that include attention to Probiotics, etc.
-

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Keebler
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Back to that other site where you read that ehrlichia usually clears without treatment. That is not true. Not good advice. That sounds like IDSA "guidance". And, treatment that the IDSA recommends for erhlichia is often not adequate.

Erhlichia can be very dangerous, indeed.

Be careful where you pick up other information. Best to go right to ILADS website for the truth about tick borne infections.

www.ilads.org

ILADS

and two excellent ILADS "minded" educational sites:

www.lymedisease.org

Lyme Disease.org


http://www.lymediseaseassociation.org/

Lyme Disease Association
-

[ 03-14-2015, 08:26 PM: Message edited by: Keebler ]

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Lymetoo
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I'd really like to know which website said that ehrlichia would clear on its own.

I know of quite a few deaths from it. Most were young children who died before they were even diagnosed.

--------------------
--Lymetutu--
Opinions, not medical advice!

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ram2390
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Do you think I have Ehrlichia though?

My IGM was <20. IGG was high- 160. What does that mean?

My thinking is this:

I might as well try antibiotics or some treatment for say a month and 1 of 3 things will happen:

1) no changes in anything, so maybe my sleep disturbance and twitches are not Lyme related

2) I will get horrible symptoms meaning I had Lyme or co infections

3) I will get horrible symptoms and then feel better

Thoughts? There are so many different parts of my data that make it seem like an impossible task to build a trial treatment plan. Do I try attack the Lyme, the Babesia or the Ehrlichia??

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ram2390
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Also if it matters in helping my diagnosis, I live in Texas and believe that if I did get bit it was from the Lone Star Tick.

According to Wikipedia:

Though the primary bacterium responsible for Lyme disease, Borrelia burgdorferi, has occasionally been isolated from lone star ticks, numerous vector competency tests have demonstrated that this tick is extremely unlikely to be capable of transmitting Lyme disease

Is this true? Perhaps I don't have Burgdorferi but only the co infections?

Also from Wikipedia on E Chafeensis:

Patients display early symptoms within 1 to 2 weeks after tick infection. Early symptoms include fever, headache,[9] malaise, low-back pain, or gastrointestinal symptoms

This fits with my story. About 2 weeks after I started waking up in my sleep, I got flu like symptoms for 2 days.

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Keebler
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Wiki is not a credible place for detail about ticks or tick borne disease because it can be hard to know what is correct is what is not.

some of what you pasted there about ehrlichia can certainly be true (be sure to mark your start of symptoms on your list when you see a LLMD)

but some of what Wiki says is false. They are wrong about the ticks.

Lone star ticks can absolutely carry lyme. The IDSA is behind most of what is on Wiki's pages regarding lyme / tick borne infections.

IDSA does NOT convey the truth.

The three sites listed a few posts above are the best to consult - sites you CAN trust: ILADS; LymeDisease.org & LDA. Each of those sites has many excellent information pages.

Really, all kinds of ticks are in many states. And all kinds of ticks can carry most tick borne infections. While some kinds of tick are more in one region than another, all bets are off - they don't announce themselves at the state line.

Also consider: Birds fly. Climate shifts. Migration patterns shift, too. Ships & airplanes also figure into vector travel.

Mosquitoes and other vectors besides ticks can also carry lyme.
-

[ 03-15-2015, 01:17 AM: Message edited by: Keebler ]

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Keebler
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For your convenience, bringing these back up for you:

www.ilads.org

ILADS

and two excellent ILADS "minded" educational sites:

www.lymedisease.org

Lyme Disease.org


http://www.lymediseaseassociation.org/

Lyme Disease Association
-

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Keebler
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http://lymedisease.org/news/lyme_disease_views/lyme-south-lone-star.html

Lone star tick implicated in Lyme disease in the South

From LymeDisease.org - 4th June 2013

Excerpt:

Liz Schmitz, of the Georgia Lyme Disease Association, discusses important new research indicating that yes, folks, there is indeed Lyme disease in the southern US. . .

(full article at link above)
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Keebler
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I've seen two lone star ticks in Oregon, by the way. There is no boundary for any tick, IMO. And any tick can carry whatever infections that may have been contained in their previous blood meals.
-

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Keebler
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You ask if there is hope. You ask for some reassurance. So as not to get lost in trying to share educational detail . . .

yes, there is hope. As you say it's been about two years since, there are many who have gone many years, decades, even a life time before figuring this out. And many do get better.

And, yes, even as all this can be overwhelming on so many levels, be reassured that having the facts is the first step to solving a puzzle.

Unfortunately, though, it's not easy and our medical system makes it even harder. Still, it's a weekend. Past midnight where you are.

I hope by now you are able to rest and know that it's one step at a time . . . with taking care of yourself always #1 on any list (right alongside of having the facts).
-

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Keebler
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http://www.lymenet.org/SupportGroups/UnitedStates/Texas/

Texas - Lyme Support Groups

Google:

"lyme support groups" Texas


http://www.lymedisease.org/resources/support.html

Find your state online support here, too.
-

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Judie
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quote:
Originally posted by ram2390:


...My thinking is this:

I might as well try antibiotics or some treatment for say a month and 1 of 3 things will happen:

1) no changes in anything, so maybe my sleep disturbance and twitches are not Lyme related

2) I will get horrible symptoms meaning I had Lyme or co infections

3) I will get horrible symptoms and then feel better...

4) You might just feel better.

I just got better and better on antibiotics, no noticeable herx. I think PMS was way worse than any herx I had.

I would avoid the fluoroquinolones though. Those did me in (see the top thread).

Don't mistake an adverse drug reaction for a herx.

If this is any comfort to you, I had 15 coinfections last count and I got better.

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ram2390
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Thanks for the reply Judie.

Which ABX did you take?

I'm going to ask about Bactrim and/or Doxy.

Please don't get me wrong, I do believe Lyme exists, but the medical establishment which says "if you take ABX for 4-6 months, that is total nonsense, and of course you will have bad reactions to taking ABX for that long, which you nickname Herx" is very convincing to me...

It's so hard to know who to believe. I don't get the people that think that 6+ months on ABX will help if the first 3-5 months didn't???

Am I wrong? I would never try ABX that long. I'd try another treatment method or drug if it didn't work after 2 months

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Keebler
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It's vital, absolutely vital to your future, to understand the SCIENCE of borrelia, and other TBD.

Assumptions can be dangerous. This is why those links are listed, to help in understanding the science of lyme, the complexity of it all.

Excellent book: Cure Unknown by Pamela Weintraub. This book could save your life.

There are various treatment options but please, please, do not fall into any assumptions regarding anything about the nature of any TBD or about treatment, especially the length.
-

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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Judie
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quote:
Originally posted by ram2390:
Thanks for the reply Judie.

Which ABX did you take?

I'm going to ask about Bactrim and/or Doxy.

Please don't get me wrong, I do believe Lyme exists, but the medical establishment which says "if you take ABX for 4-6 months, that is total nonsense, and of course you will have bad reactions to taking ABX for that long, which you nickname Herx" is very convincing to me...

It's so hard to know who to believe. I don't get the people that think that 6+ months on ABX will help if the first 3-5 months didn't???

Am I wrong? I would never try ABX that long. I'd try another treatment method or drug if it didn't work after 2 months

I think the issue is a lot of people believe you should be well in 2 months, but science has proved otherwise. When some patients go off they antibiotics, the symptoms return.

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys.html

http://www.ncbi.nlm.nih.gov/pubmed/7853849

Google: "Rhesus Monkey Lyme" for more info.

Another problem is persistence:

Antibiotic Resistance and Persisters In Lyme disease

http://campother.blogspot.com/2014/07/antibiotic-resistance-and-persisters-in.html

I was on too many antibiotics to list and allergic/had adverse drug reactions to several of the typical one (not a herx, you really need to be your own advocate on this one, I would have wound up in a wheelchair if I listened to the doc when I was on levaquin who thought it was a herx).

If you don't want to do antibiotics for more than 2 months, just get the infection load down and then change to something like traditional Chinese Medicine herbs to keep your body strong. That's what I do. Find the best Chinese Herbalist in your area who does custom formulas (not the pills).

Oh, and I've been infected twice. Treated with antibiotics for 6 months the first time and a year the second time. Stopped the antibiotics when enough was enough and I was having diminishing returns.

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Keebler
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Along with Judie's info about persistence, also important to know is why antibiotics, alone, can cause lyme persistence.

Why treatment must be multi-faceted with antiprotozoal & also anti-biofilm agents (some of which may or may not do double duty), etc.

Most regular doctors have no clue about the complexities involved so that's just part of why it's so important to find a truly TBD "literate" doctor whatever methods you explore.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme

[ 03-15-2015, 06:38 PM: Message edited by: Keebler ]

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ram2390
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quote:
Originally posted by Judie:
quote:
Originally posted by ram2390:
Thanks for the reply Judie.

Which ABX did you take?

I'm going to ask about Bactrim and/or Doxy.

Please don't get me wrong, I do believe Lyme exists, but the medical establishment which says "if you take ABX for 4-6 months, that is total nonsense, and of course you will have bad reactions to taking ABX for that long, which you nickname Herx" is very convincing to me...

It's so hard to know who to believe. I don't get the people that think that 6+ months on ABX will help if the first 3-5 months didn't???

Am I wrong? I would never try ABX that long. I'd try another treatment method or drug if it didn't work after 2 months

I think the issue is a lot of people believe you should be well in 2 months, but science has proved otherwise. When some patients go off they antibiotics, the symptoms return.

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-new-study-shows-lyme-persists-in-monkeys.html

http://www.ncbi.nlm.nih.gov/pubmed/7853849

Google: "Rhesus Monkey Lyme" for more info.

Another problem is persistence:

Antibiotic Resistance and Persisters In Lyme disease

http://campother.blogspot.com/2014/07/antibiotic-resistance-and-persisters-in.html

I was on too many antibiotics to list and allergic/had adverse drug reactions to several of the typical one (not a herx, you really need to be your own advocate on this one, I would have wound up in a wheelchair if I listened to the doc when I was on levaquin who thought it was a herx).

If you don't want to do antibiotics for more than 2 months, just get the infection load down and then change to something like traditional Chinese Medicine herbs to keep your body strong. That's what I do. Find the best Chinese Herbalist in your area who does custom formulas (not the pills).

Oh, and I've been infected twice. Treated with antibiotics for 6 months the first time and a year the second time. Stopped the antibiotics when enough was enough and I was having diminishing returns.

How do I know what the infection load even is? Igenex report? CD57 report? What tests do you guys recommend?

I am loathe to try antibiotics because I took them for H Pylori and it ruined my gut flora, which I finally healed myself of after 6 months of struggle.

All of this is totally overwhelming. What about my co infections? What the heck am I treating exactly? Lyme? Chafeensis? Babesia? How do I know which are affecting me, and which herbs to use on which??

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Lymetoo
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Doxy will take care of ehrlichia and Lyme at the same time. Babesia will be harder to eradicate and takes different meds.

You will not feel better in 2 months unless you are one of those lucky people.

You are in for the long haul to get well.. or you pass on treatment and pay the piper later down the road. It's all up to you.

It's hard to know what your bacterial load is. When you begin to herx you will have an idea.

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Opinions, not medical advice!

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TF
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You said: "I don't get the people that think that 6+ months on ABX will help if the first 3-5 months didn't???

Am I wrong?

The answer is "Yes, you are wrong." You see, you don't know anything about lyme disease.

Just like TB requires treatment for months or years, so does lyme. If you had TB, would you say, "If I am not better after 2 months, I quit taking these antibiotics!"?

The Health Department visits TB patients to ensure that they keep taking their meds for the full year or other time frame. That's because lots of people want to quit taking their TB meds after a few month's time.

There are quite a few diseases that take a long time to cure. TB and lyme are just 2 examples.

I took antibiotics for rheumatic fever from second grade to 9th grade (off and on) and that is how I finally got rid of rheumatic fever.

Do you know people who take antibiotics for acne? They take it for years. When they stop, the acne comes back, but as long as they take the antibiotics, they are free of acne. Eventually, they no longer need the antibiotics. They are finally past the acne stage.

So, learn a little more about the diseases that take a long time to cure and you will then see that lyme is just one such disease.

Why not study a document written by the world's #1 lyme doctor, Dr. Joseph Burrascano, and then decide to try what he says. He was the most successful lyme doctor on the planet when he was practicing. They came from all over the world to see him.

Here are a few quotes from his "Advanced Topics in Lyme Disease":

"COURSE DURING THERAPY
As the spirochete has a very long generation time (12 to 24 hours in vitro and possibly much longer in living systems) and may have periods of dormancy, during which time antibiotics will not kill the organism, treatment has to be continued for a long period of time to eradicate all the active symptoms and prevent a relapse, especially in late infections. If treatment is discontinued before all symptoms of active infection have cleared, the patient will remain ill and possibly relapse further. In general, early LB [lyme borreliosis] is treated for four to six weeks, and late LB usually requires a minimum of four to six months of continuous treatment. All patients respond differently and therapy must be individualized. It is not uncommon for a patient who has been ill for many years to require open ended treatment regimens; indeed, some patients will require ongoing maintenance therapy for years to remain well." (pages 16-17)

"CYSTIC FORM- When present in a hostile environment, such as growth medium lacking some nutrients, spinal fluid, or serum with certain antibiotics added, Bb can change from the spiral form (“spirochete”) into a cyst form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, Bb can revert into the spirochete form. The antibiotics commonly used for Lyme do not kill the cystic form of Bb." (page 13)


http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf

I suggest you read and STUDY the Burrascano Guidelines and get an education on the diseases that you have.

I got cured of lyme, babesiosis, and bartonella by staying on antibiotics for 13 months continuously.

I completed my treatment 10 years ago and I am still free of lyme disease. My doctor treated my babesiosis for 11 months straight. The last 5 months of this time, I was symptom-free, but he won't let any patients stop treatment in winter because winter is a stress on the body and could cause the disease to come right back.

Realize that you have 2 or 3 diseases. It may take a number of months to treat each one. A lot depends on if you are allergic to the best meds. If you are, then the doc has to use less effective meds on you and that means treatment can take twice as long. That is what happened to me when treating babesiosis.

You have no idea what a smart disease lyme is. As the quote above regarding cysts tells you, in the presence of antibiotics, lyme will protect itself from destruction by going into cyst form.

In that form, it will just wait until it no longer senses antibiotics in the blood. Ha Ha. Now that you have stopped the meds, the lyme comes out of the cyst form, in greater numbers than before, and makes you more miserable than before.

If you just treat for a few months, you will experience this for yourself!

Eventually, you may come to believe what Burrascano says here:

"Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word." (page 3)

You can undertreat yourself as many times as you like until you have proven to yourself that short treatment doesn't work.

But, if you do that, you make your chances of a cure become less and less. Please read this whole paragraph and learn why:

"GENERAL PRINCIPLES

In general, you can think of LB as having three categories: acute, early disseminated, and chronic. The sooner treatment is begun after the start of the infection, the higher the success rate. However, since it is easiest to cure early disease, this category of LB must be taken VERY seriously. Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word. So, while the bulk of this document focuses of the more problematic chronic patient, strong emphasis is also placed on earlier stages of this illness where closest attention and care must be made." (page 3)

Also, regarding the things that can possibly happen once you start to treat lyme disease, well another thing that happens to many is that their treatment is inadequate so some symptoms leave but new ones eventually come.

If the treatment is inadequate, the disease will continue to progress. That is what happened to me when I got lousy lyme treatment from my second lyme doctor. (I was cured by my THIRD lyme doctor.)

So, 5) I will get worse as I am on treatment, getting more terrible symptoms, worse than before.

Lyme patients have to look out for doctors who do not follow Burrascano. Some of these doctors put patients on only one antibiotic at a time for lyme. Lyme can evade that one antibiotic. Therefore, the patient gets more symptoms, worse than what they had before while still treating.

That happened to me. I got rid or nearly rid of a lot of symptoms and then just stayed the same, not getting any better. So, the doc said to stop antibiotics. When I did, the disease came back full force, as bad as it was originally.

So, doc said to go back on antibiotics and I did. After a few times like this (stopping and having to start again), I got a totally horrendous new symptom--trigeminal neuralgia.

It feels like someone suddenly electrocuted half of your face. It keeps happening. The pain is totally unbearable. The medical literature also says it is unbearable.

I got to ask Burrascano about this at a lyme conference once. He said to me, "If the therapy is inadequate, the disease will continue to progress."

That is how I learned that my doctor's treatment of me was inadequate. I then changed doctors, got one who followed Burrascano, put me on at least 2 antibiotics simultaneously to ambush the lyme, and I was finished with lyme treatment in 2 months.

So, read the Burrascano document and learn about this very complex disease. It is not an easy read because it was written to doctors to teach them how to treat lyme and the coinfections. But, it will give you your education on the diseases that you have.

Welcome to LymeNet! Keep posting and reading. We will help you here all we can.

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TF
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Regarding the safety of taking a combination of high-dose antibiotics as recommended by Burrascano, see page 22, "Safety."

The Burrascano protocol includes a strategy to maintain gut flora. It worked for me.

You take high quality probiotics at least 2 hours after the antibiotics. You do this at least twice per day.

YOu should also drink some unsweetened kefir daily. You also follow the anti-yeast diet that Burrascano discusses at the back of the document.

Burrascano himself had lyme. He went through the treatment. He kept his gut healthy.

The protocol works.

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Catgirl
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Without reading everyone's posts here, reality is you need to treat it, and six months is nothing. It's years to get rid of it even for most of the lucky ones.

Don't stress over which co infections you have. They often slowly pop up while treating one of them, then another one pops up. You need a good lyme doc who knows how to treat. You can find one in SEEKING A Dr, or www.lymediseaseassociaton.org

As far as abx go, I couldn't handle them. Some people can though. There is no easy answer, as we are all different, so treatment for lyme and company is not a simple protocol. It's different for each of us. Many who try abx and discover they can't handle them try other things. Below is something I recently posted for another newbie to lyme.

. . .

From someone who took ceftin and other abx, I wouldn't take them if I were you. They ruined my gut and it's never been the same since. I can't eat even close to what I was eating before I took abx. If I could go back in time and undo this I would.

I would however try alternative stuff like rife, ozone, asyra, pemf, mild HBOT, ondamed, Buhner, MMS, salt/c protocol, herbs, etc. I have done better with the alternative stuff than I ever did with abx. You might want to study up on Dr. K (king of alternative medicine).

Also parasites. Dr K has found them in all of his lyme patients and treats parasites first (wish I had done this). You might want to visit THE PARASITE WARRIOR'S THREAD here. Most docs miss parasites and in doing so the patient is slow to heal, or does not heal.

We are all different. Some people can handle abx, and some people can't. But if you're one of the ones who can't, you can't go back and undo the damage they do. So there is risk if you take them, just be aware. If you do decide on abx though, take tons of probiotics. My doc put me on 32 billion and it was nothing. I needed in the 100 billions).

Insights into Lyme Disease Treatment (Connie Strasheim) will give you several viewpoints from different docs. Also, Buhner (Healing Lyme) is a good herbal alternative for some.

http://www.betterhealthguy.com/a-deep-look-beyond-lyme

http://www.klinghardtacademy.com/

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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ram2390
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What are people's opinions on ABX versus herbs, in my case at least?

Catgirl, the more I read posts like yours the more worried I get. I've heard people say it could take months or years, if ever, to cure it.

Does it bode well for me at all that I have essentially no symptoms except for sleep disruption occasionally and minor muscle twitching? Or that for well over one year post-infection I was an athlete and never would have suspected Lyme until the twitches started? Or that I caught this 18 months post-suspected infection date?

Or I am in the exact same boat prognosis-wise as the person who has terrible symptoms and found out 15 years post infection date?

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droid1226
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Don't worry about the future or what might happen down the road. Stay working out if you still are. Stay weight lifting if you can. I think that's most important.

Don't get sucked into these forums, they will consume you with "what ifs?"

These forums are an absolute tool for getting better but use them as an asset for getting better and informing yourself.

I have almost exactly the same results. Including my Igenex western blot (which is identical) and the exact same number on the ehrlichia...odd.

If it were me, I would try to keep my immune system as strong as possible, not treat the babesia...since treatment is so $$ and you are not showing symptoms but take overlapping drugs possibly for ehrlichia and bart...doxy, rifampin, possibly cefdinir..

or look into the buhner protocol. it's all natural. Those tinctures helped me.

--------------------
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TF
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Burrascano's protocol is a 4-pronged approach:

high-dose combinations of antibiotics
supplements and herbs
a certain diet
weightlifting for one continuous hour every other day

The weightlifting boosts your immune system. That may well be why you have had lyme for 18 months but are not very symptomatic.

I strongly suggest you continue with the weightlifting following Burrascano's guidelines.

See pages 31-32. You must lift weights for a continuous hour. You must do a full body workout each time. You must not do aerobic exercise. You must rest at least one day in between the one-hour workouts.

Every person's case is so totally different that nobody can give you factual answers to your many questions. We can only give opinions. Why not read Burrascano and get his.

He discusses the various stages of lyme on pages 19-20. Use of steroids makes your case more difficult to resolve because steroids suppress the immune system.

Lyme is like AIDS. After one year of having it, generally the person's immune system is compromised. The weightlifting is therefore essential to get the immune system back to normal so that it can fight these diseases for you as it was intended to do.

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Keebler
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You say that you have mild asthma but that you take Advair (a corticosteroid inhaler) more so that you can sleep without interruption.

The Advair / steroids could be masking some symptoms (and not just with the lungs). Be sure to read the detail in a previous post about steroids).

A good LL ND will have other options for your breathing issue. And magnesium could help there, too.

Whether than deciding between one or the other method (as it's impossible to learn all that is required for such a decision in a short time yourself - it can take years to learn all about lyme / TBD),

if you are not inclined to consult with an ILADS educated LLMD, (which would be good to do for a start, anyway) . . .

you can see an ILADS educated LL ND for a full assessment, you will have better information not just on what is going on but on the options in addressing all that.

All ILADS "educated" doctors will be familiar with Burrascano's treatment as well as necessary support measures.

A LL ND will have a fuller range of the herbal supports. In a FEW states, a ND can also prescribe Rx but if you see one who does not, be sure they have a working relationship with a LLMD when / if Rx is needed along the way.
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ram2390
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Thanks guys. One of my biggest struggles is figuring out how the Advair plays into this.

For the record I have no breathing issues at all.

I only take Advair to help my sleep. I now realize my sleep disturbance had nothing to do with "Advair addiction" which is what I thought I had and everything to do with Lyme and co infections.

I'm afraid if I stop the advair now I will only get 2 hours of sleep a night, like I was back in November when I was off of Advair.

If I decide to do antibiotic treatment, should I go off of Advair?

Is there any way to test if it is suppressing my immune system?

also, should I get a CD57 test?

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TF
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When you go to a lyme doctor for treatment, then discuss these questions.

Start making a list of your questions now and add to it as time goes on. Prioritize your questions so that if you don't have enough time to ask them all, you will at least have asked your highest priority questions.

If you read Burrascano, you may answer a lot of your questions.

The CD57 test is discussed by Burrascano on page 8. Read it. Some/many believe it is a good test of how suppressed your immune system is. If your lyme doctor believes it is a good test and you want it, he will likely order it for you.

So, spend your time finding a good lyme doctor, reading, and making your list of questions.

My lyme doc who cured me told me that lyme affects the sleep center of the brain. That is why lyme patients cannot sleep.

Once you get good lyme treatment, the lyme insomnia will go away. But, if your doc gives you lousy lyme treatment, it won't go away. That was my experience.

To prepare for your first appointment, you must make a very complete list of your symptoms. Use Burrascano's list on pages 9-11 to help you with this. (You will see the sleep symptoms mentioned.)

These diseases are diagnosed mainly based on symptoms. So, spend a lot of time listing symptoms. Read the symptoms of all of the coinfections and see if you have any of them.

You may have symptoms that you are attributing to other things. So, list everything you have and let the doctor decide.

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Keebler
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You do not need a CD 57 test, IMO best to put money to other purposes. A LL doctor can tell you more AFTER a good physical assessment.

It is very likely that the steroids you are on could cause false results for the CD57.

Best to get a LL doctor's advice (whether MD or ND) about how to gradually move away from Advair, even if you say you don't need it for breathing or only take it at night, it's in your body systemically and best to have medical advice on how to make a shift from it.

It can last in your body for up to six months, too, so that should be considered in the adjustment phase.

I am not a doctor, nor have any medical training. Just from what I've read, magnesium would seem to be something that could be a wonderful help. Still, for so many reasons, I hope you can consult with a LLMD or LL ND.

If that is just not possible, then, you would not be the first to cobble together whatever you might . . . but it will take a lot of reading first. The Liver support thread - with the LL ND links is a good place to see the range of articles / books.

Main question: will you be able to get an appointment with a LLMD or LL ND? Is that possible?

Can you connect with several lyme support groups within a certain radius to you?

Please consider the gist of TF's posts: the very best LL doctor you can find is of utmost importance. A good consult / history / clinical assessment can help you figure out the next step.
-

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=032353;p=0

LL author / medical journalist Pamela Weintraub links / posts

especially see - about 1/3 of the way down - a post of mine with excerpts of hers regarding different strains, etc. And her links are also just a gold mine of information.

Her book, "Cure Unknown" explains so much about the complexities involved and how she and her family worked their way through the maze in various ways over time. She has achieved a very good strong remission.

You can get this book through Interlibrary Loan.
-

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ram2390
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Thanks for the further replies. I'm scheduled to speak with several LLMD's soon. I am getting help.

What are the forum members opinions if any on staying on Advair during treatment? Bad idea?

"Technically" asthma docs say Advair is not a systemic steroid and should not suppress the immune system because it is inhaled into the lungs, but I think there is definitely a systemic effect.

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Keebler
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It IS systemic. There is nothing that you put on or in your body (anywhere) that is not circulated.

You say that your asthma is "mild" and that you don't really even use Advair for breathing but to lessen the muscle twitches at night -

- the only reason for a steroid (for someone with a stealth infection) would be if a life or vision threatening situation arose and, even then, with very specific antibiotic treatment on board BEFORE use if possible.

Even topical steroid ointments are a no-no as per one of the LLMD's quotes here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
-

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ram2390
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Thanks Keebler.

I wonder why when I tried to go off of my Advair, my sleep disturbance got so bad that I had to go back on it.

Is there an explanation/theory for that?

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Keebler
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Others may have some ideas about that.

Could be that you breathe more easily.

Steroids often settle down inflammation. That might be one explanation. Inflammation in the brain, liver, nerves, everywhere or anywhere can cause sleep disturbance with lyme.

Be sure to read over the magnesium detail, though. It's anti-inflammatory and also calms over active nerve spasms, etc. And other safer sleep options as well.

It's a little surprising to me that a steroid inhaler would help you sleep as once a doctor tricked me when I said I did not want a steroid inhaler. He told me to hold my breath for a bit and as soon as I started to take in a fresh breath, he shot a puff of steroid spray into my mouth and I did not sleep for days - it was just too excitatory for my system.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT
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TF
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Burrascano on the subject of steroids:

"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (page 12)

"If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)." (page 20)

"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (page 4)

http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf

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Judie
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ram2390, it doesn't sound like you're horribly symptomatic at this point.

I think you may have some more options than just going straight into clobbering your body with tons of meds for years. A lot of people go that route because they simply can't function without doing it.

I'd look for the best herbalist in your area (perhaps after doing a course of antibiotics). A Traditional Chinese Medicine doctor who does custom formulas would be great to keep your body strong and help you with your sleep.

If there's a Chinese medicine school or Naturopathic school in your area, maybe you can get a referral or even look on yelp for reviews.

I weened off sleep meds and just do supplement for sleep now (it's just as effective without the nasty side effects).

Good luck!

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Judie
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quote:
Originally posted by ram2390:
Thanks Keebler.

I wonder why when I tried to go off of my Advair, my sleep disturbance got so bad that I had to go back on it.

Is there an explanation/theory for that?

Maybe pinpointing the cause of the respiratory problems will help. I think you're in a catch 22. Steroids can cause sleep disturbance. I personally had that problem with topical steroid cream which isn't suppose to be systematic (I got permanent eye damage from it and it wasn't even a high dose, I didn't even use it on my face).

I'd look into reducing VOCs in your place (use fragrance-free laundry products, no dryer sheets, no scented candles or incense, no chemical cleaners or personal products with fragrance, etc...).

List of VOCs (the worst don't have an odor at all)
http://www.health.state.mn.us/divs/eh/indoorair/voc/

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Judie
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quote:
Originally posted by ram2390:
...I wonder why when I tried to go off of my Advair, my sleep disturbance got so bad that I had to go back on it.

Is there an explanation/theory for that?

One of my first Lyme symptoms was my allergies and respiratory problems went CRAZY. Treating Lyme might actually help some of this. The immune system just freaks out and attacks stuff.

Maybe pinpointing the cause of the respiratory problems will help. I think you're in a catch 22. Steroids can cause sleep disturbance. I personally had insomnia with topical steroid cream which isn't suppose to be systematic (I got permanent eye damage from it and it wasn't even a high dose, I didn't even use it on my face).

I'd look into reducing VOCs in your place (use fragrance-free laundry products, no dryer sheets, no scented candles or incense, no chemical cleaners or personal products with fragrance, etc...).

List of VOCs (the worst don't have an odor at all)
http://www.health.state.mn.us/divs/eh/indoorair/voc/

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Keebler
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Judie brings up good detail. In addition to the air quality issues she addresses:

Fluffy stuff in your bedroom / bathroom can also cause all kinds of breathing / inflammation issues that might affect one more at night when trying to settle down.

Banish all fluffy textiles and anything that flies (powders, sprays).

A cork bathmat is best over any kind that sheds or harbor microbes / dust.

Even some smooth bedding can have chemical coatings, though, avoid anything that is "wrinkle resistant" as it's sprayed with a Teflon like substance and can "shed"

Be careful with any new textiles in bedroom. No carpet is best but if you have one, be sure it's vacuumed at least once a week.

Diet can also contribute to the "mild asthma" especially dairy & gluten.
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ram2390
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Guys, I have no respiratory problems. None. Zero. I was born with asthma and mild inflammation in my lungs. But I have never suffered from it like most asthmatics do. I can't remember the last time I wheezed and I've never had an asthma attack.

I only stayed on the Advair because after my suspected tick bite on July 30, 2013, whenever I went off of it, I had sleep disturbance. I had been off of Advair or at a lower dose prior to that date many times and never had any symptoms.

This is quite weird though, I realize that...still piecing it all together

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Keebler
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Oh, I thought you had written "mild asthma" in your first post (maybe I read that wrong?) and assumed that is why you had the Advair in the first place.

Still, the things about air quality are important for anyone and can contribute to body wide inflammation that may not be quite over the top but still affect sleep quality.

It's also rather disconcerting that any doctor would prescribe or even suggest Advair (or any corticosteroid inhaler) for someone who does not have severe asthma - as you say you really have no issues with your lungs. None. Zero.

Steroids can cause all kinds of long term issues, such as bone softening (just for one). I'm just sorry to see any doctor not look for other methods.

http://www.ncbi.nlm.nih.gov/pubmed/8941496

Corticosteroid-induced bone loss. Prevention and management. 1996

[ 03-16-2015, 07:39 PM: Message edited by: Keebler ]

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ram2390
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What are some opinions from the people on this board on oxygen therapy or rifing to cure Lyme and co infections?
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Keebler
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I have some hesitation about oxygen - but be sure to go up to the search feature and you can find past threads on the topic.

IMO, Rife can be an excellent way to go, along with support herbs / nutrients. Yet, it's still best if you can have an ILADS educated LL ND to first fully assess your case and then guide you.

You can check out Rosner's book, and browse the Rife discussion thread here, and the Facebook group, too, to see others' paths, questions along the way, etc.

And, really, a rife machine can be a superb machine to have for life, for yourself as other things are to be encountered throughout the years for yourself or loved ones. Every home should have one, I think.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

RIFE Machine - Reference LINKS
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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi/ubb/search/search_forum/1

LymeNet Archives

searches are faster if you use the subject heading but sometimes someone will have a thread and the subject line just might not have the key search term in it.
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Judie
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Something to keep in mind is that since you've been sick a couple years and don't have many symptoms, your immune system has been working enough to keep the disease from going out of control.

You'll probably want think about long-term maintenance to keep yourself healthy and keep the infection (or infections) at bay no matter what methods you chose.

Also, there's no way to know if Lyme is ever cured. There's no accurate testing. Some people go into remission and then it comes back years later. That's why it's so important to keep yourself healthy whether it be herbal support or other methods. Some people take low-dose antibiotics for several years after ending hardcore treatment.

Lastly, I think you had a preview of what hardcore Lyme treatment is like from when you treated H. pylori.

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