This is topic Sigh. Do I NOT have Lyme? Please help me think about this. in forum Medical Questions at LymeNet Flash.

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Posted by Jordana (Member # 45305) on :
A couple days ago I saw two doctors in a row: one ID doc, and one walk-in clinic doc who was SHOCKED at how long I had been on Bactrim.

Neither one believed for a *second* that I had Lyme disease. They were seriously so unimpressed with this idea I felt like I was talking to aliens, or I was the alien.

The walkin clinic doc shut me down when I was explaining to her about Lyme and why I thought I had it. She said she was from Connecticut and that she knew all about Lyme. She clearly did not think I had Lyme and did not think I should have been taking Bactrim for it even if I did.

That made me look back at everything I had been doing.

I've been hanging around this board since February trying to figure out what is wrong with me. STRANGE symptoms, including facial palsy, neuro symptoms and diarrhea for six months straight, eye disturbances, blurred vision, double vision, floaters, sketchy bladder ( now) palpitations and vibrating at night.

I have been checked out by every doctor imaginable -- neuro docs, endo docs, heart monitors, screened for celiac, Lyme, Lupus.... everything is at somewhat "normal" levels except for a couple of things.

Positive ANA
Positive for anti-ssb antibodies -- Sjogrens, trace reading
Positive for anti-achr antibodies -- myasthenia gravis diagnostic though this was considered "borderline" plus I had a somewhat normal EMG/SFEMG
Iron Deficiency Anemia
Now losing WBCs and neutrophils,both slightly low on last reading.
Losing potassium
Adrenal adenoma (benign, non-active)
Multinodular goiter
Actively in Menopause, first or second year.

Negative titers for all co-infections.

Borrelia Western Blot in Feb:

41, 66 IGG KdA positive
ELISA Negative in Feb.

Armin Labs NEGATIVE seraspot
NEGATIVE co-infections
NEGATIVE elispot for all but one:

Borrelia Fully Antigen -- borderline at 2 ref < 2

Positive monospot
Positive cytomegalovirus
High coxsackie titers

Retest for Lyme at Mayo Clinic December 2015:


Western Blot Mayo Clinic December 2015:

IGM: 41 KdA
IGG: 41 KdA

Positive response to Bactrim antibiotics.

CD57: 61

In October my gallbladder went crazy and the ER admitted me and yanked it out. After six months of near-scary diarrhea the stomach stuff cleared up a little bit.

Symptoms now after 10 days of Bactrim are mostly muscle weakness -- my neck shoulders and hips just straining, sometimes my arms ache with normal activity.

Hand and foot stiffness


Blood pressure all over the place -- sometimes fine, sometimes high, within a couple hours.

Brain fog -- losing names of things.

Ratchety movement, especially my neck.

Sort of "dementia" -- low interest in most things.

Showers make me exhausted, etc.

Bladder herx?

Blurred vision and floaters - eyes won't focus.

Jaw stiffness; muscle spasms still on right side of face and neck.


Both of these doctors, and in fact the LLMD, all said that I was not presenting like a "Lyme patient."

I don't know what to think, seriously.
Posted by Catgirl (Member # 31149) on :
How long have you been on any abx? Usually a couple of months after taking them a true LLMD can re test you through IgeneX. I'm no doc, but it sounds like you have lyme and then some.

Do you not know about ID docs? They are clueless about lyme. CT doc was either clueless or protecting herself or job. Do you not know the whole lyme controversy? I suggest you read Cure Unknown (Weintraub) as soon as possible.

I doubt any LLMD is going to force a patient to realize they have lyme. It's not worth it for them (a waste of their valuable time and then some).

They need to work on people who know they have it--people who know that no other doc has been able to help them. People who have been to every specialist none of which were unable to explain what is happening to them. People who get sicker and sicker.

If I were you I'd retest through IgeneX but only after being on abx a couple of months. Also READ Cure Unknown. It's important to keep an open mind with lyme, otherwise people drift through the medical system and deteriorate.

Best Wishes!
Posted by Jordana (Member # 45305) on :
Thanks for your answer. The LLMD hasn't said I have Lyme and is treating me with 90 days of Bactrim. I was great on it for ten days, but it made my urine crystallize and raised my eosinophils so now I'm unsure of how to proceed.

LLMD says keep going.

He does not have crystals in his urine though.

I do know about the controversy. I've seen Under Our Skin, etc. It would be good to have Lyme because then I would have some idea of what to do. Having Lyme is not great -- but NOT having Lyme and having no clue what the answer is for all this weirdness and misery is unbearable.

There are some other possibilities. I was on ten days of Levaquin last November and another ten days in February. The first symptoms of what I was certain of meningitis preceded the abx though.

I had a botox injection last October. If this is all side effects from that then botox has an UNBELIEVABLE side effect profile.

I could have had some kind of Guillaine Barre that gave me the shakes. From Campylobacter, a flagellated enterovirus.

Or I just have EBV and CMV. That's really enough to have, though something is obviously tweaking my b cells.

Or it's Lyme.

But it is definitely *something*.
Posted by MichaelTampa (Member # 24868) on :
Another possibility to consider, with the neurological symptoms, above what you listed (lyme, botox) would be mold.
Posted by Jordana (Member # 45305) on :
Thanks, my LLMD has the Shoemaker protocol and I'm waiting for tests.

It seems unlikely though. I was really perfectly fine until about October last year; I've got years and years' worth of mold exposure with no noticeable symptoms at all til then.
Posted by droid1226 (Member # 34930) on :
I'm always the first to say "yep, this is lyme" but those are some pretty negative results as far as lyme goes but of course that means nothing. You could be bedridden with lyme and co's and still test neg for everything.

Anyway, my friend is seeing a Shoemaker Dr. She was exposed to mold her whole life until she bought a new house, she crashed. But she is now seeing positive results with a mold protocol. So even though see stopped being exposed, it wasn't the exposure that changed, it was her body.

Mold can be kept in the body for yrs, especially in the gut & bile. I wouldn't rule out mold even though you are no longer exposed.
Posted by Jordana (Member # 45305) on :
Interesting, thanks.

I just got my test back for tgf-b1 and it was really *really* high.
Posted by TF (Member # 14183) on :

Also, see this old thread. In 2011 mold's relationship to lyme was just being discussed. I believe mold is what set me up for lyme disease.;f=1;t=112279;p=0#000017
Posted by WPinVA (Member # 33581) on :
Agree with not ruling out the mold. It is possible your body was able to handle the mold until you were infected/exposed to something else and then that tipped the balance.

I would bet you have more than one thing going on. Most of us do. Highly recommend the book "Why Can't I Get Better."

Are you on anything to detox? That's an important component.

Honestly, I would not worry at all about what the ID doctor or the urgent care clinic doctor said. You are with an LLMD now and it sounds like he's running some good tests.

But why not ask him about switching to another antibiotic? It's not unusual to not be able to tolerate one med or another and there is always an alternative.
Posted by Judie (Member # 38323) on :
Guillaine Barre can be from Lyme and other infections.

I have high tgf-b1 and high titers for several infections in addition to Lyme (something like 13 or 14 last count, EBV, CMV, coxsackie being some of them).

To be honest, a lot of your symptoms sound like fluoroquinolone toxicity (or some other toxicity).

Have you ever taken cipro, levaquin for a UTI or sinus infection?

These drugs change your DNA and cause a cascading effect. The problems come after you stop the drug. Symptoms show over the next several months and years.
Posted by Jordana (Member # 45305) on :
Yes, absolutely, I had two rounds of levaquin and one round of cipro back to back. January will make the last dose one year ago.

I wondered for a long time if that's what it was because of all the truly *sudden* nerve problems; things I had never experienced and could barely describe.

Then I was onto botox poisoning -- still not sure about that, still possible.

Then I thought maybe guillaine-barre or cidp.

I had a borderline positive anti-achr for myasthenia gravis; thought that was it for awhile, but that doesn't explain near half of the rest of it.

This all came on so suddenly. One day I was perfectly normal ( though getting inexplicably exhausted) -- the next day I had parotitis, meningitis, an ear infection, vision problems, facial palsy, six bulging cervical discs and insane nerve and gastro symptoms.

From what I've read *all* of that -- I could be wrong -- but it seemed like it could ONLY be Lyme. What else would do all that?

I actually went and did a followup HIV test just to make sure that wasn't it, even though I've had two conclusive negatives already.

I've had every test a person could get. I have clear mri's. I have clear ct's. I don't know what problem to solve.

In other TGF-Beta 1 level was at *17,940.*
Posted by TF (Member # 14183) on :
Have you ever been tested through Igenex for lyme and all of the coinfections?

Above, you sometimes name the lab that gave you various results, and sometimes you don't. The name of the lab is key.

So, I see Mayo Clinic and Armin Labs. Are those the only labs that tested you?

If so, I would encourage you to get tested for lyme and coinfections through a lab that specializes in tick-borne diseases. One that is a reference lab, as Burrascano says.

And, it sounds like you definitely have to detoxify yourself. If you read the old thread regarding mold and lyme that I gave you, it is common to start out with a moldy environment and be fine and then eventually develop all kinds of illnesses even though you are no longer around mold.
Posted by TF (Member # 14183) on :
If you really need to detoxify, then taking any antibiotic can just make you sicker.

You may have to detoxify for a while before you can be treated any more.
Posted by Jordana (Member # 45305) on :
Thanks TF, I was just thinking that. Sulfa drugs are especially notorious for hanging around longer than they should.

I haven't tested at Igenex; but Armin Labs is essentially a 100 percent Lyme testing lab.

I think my LLMD was going to rechallenge after abx and I could certainly ask him to order Igenex. Now, though, I'm not so sure about abx right now.
Posted by Robin123 (Member # 9197) on :
I think a number of your symptoms sound like Lyme - the facial palsy, all your eye symptoms, jaw stiffness, and more. We don't always test positive, and nonLyme-treating doctors will tell you anything. Gotta see a Lyme-treating doc.

To stop all my Lyme eye symptoms, I drink mangosteen juice, an anti-inflammatory juice. I had floaters, light sensitivity, eye muscle pain and blurring vision. It all cleared up in 24 hours after I started drinking the juice!

I drank a lot more in the beginning, although I had a big response, so go carefully if you decide to try it. Now I drink close to an ounce/day. I like the Mango-Xan version, as it's the most tart. You can find it in health food stores and online.
Posted by Keebler (Member # 12673) on :
Mangosteen can also be excellent for the bladder issue you are dealing with.
Posted by Jordana (Member # 45305) on :
Okay, I'm trying that!

Thanks [Smile]
Posted by Marnie (Member # 773) on :
A couple of things you listed point to SLE (ANA, anemia, goiter...)

In SLE, the type 2 macrophages...M2a and M2c are down (they are anti-inflammatory) and M2b is up (it is proinflammatory).

= a lot of inflammation happening.

It is believed M2b is the key "problem" in SLE.

Instead of telling doctors what you think you have, word it this way, "Do you think I could have lupus?" (After showing him/her your test results.)

While there currently is no known cure, treatments to lessen symptoms and prevent organ damage are available (insurance covered) for this acknowledged autoimmune disease.

Can Bb trigger autoimmune lupus in genetically susceptible persons? I don't know, but it would not surprise me.

A genetic predisposition to lupus is currently being explored - is there a gene/genes that -> predisposition. Such as:

Complete lupus workup (testing) includes a lot:

[ 12-27-2015, 10:44 AM: Message edited by: Marnie ]
Posted by Jordana (Member # 45305) on :
That's a good point and I've thought about it a lot. I've had the malar rash a couple of times in the past year.

I've also had sudden IC symptoms, something I've never had before.

What would make me "flare"so badly now is a mystery. Also, I don't know anyone with Lupus but from what I've read from these people the flares don't seem to be as insanely violent and strange as what I've been through in the past year.

The problem is that a positive ANA and one very low titer of a specific antibody is not enough to get a diagnosis. The antibody was not specific for SLE and pointed instead to Sjogren's, which I have no symptoms of.

I was looking at the relationship between tgf-beta 1 and lupus last night, since that's my newest number. It seems inconclusive. From what I was reading it seemed that my massive tgf-beta numbers were actually working to *shut down* the autoimmune process in me, at least right now.

I also have a low CD57 -- that's supposed to be normal in Lupus -- but again it's not "that low." It's not 28 or something, it's 61 --low normal.

The other problem is that if it's assumed I have Lupus and that's wrong, the treatment is steroids, which is contraindicated in Lyme.

I think at this point, if I were sure I did not have Lyme, I would absolutely be pursuing a Lupus diagnosis because aside from the violent nature of the onset it's the only thing that makes sense.
Posted by Marnie (Member # 773) on :
Steroids PRIOR to abx. for lyme = lyme soars.

Getting inflammation down (bigtime) AND hitting Bb with abx/other methods SIMULTANEOUSLY is very helpful.

This is a very delicate balance.

Inflammation is part of healing, but nonstop isn't a good thing.

Autoimmune = too few Treg cells.

Cancer = too many Treg cells.

On the same lane in Southern Wisconsin where my sis (now autoimmune due to lyme) another woman who was dx'd lupus...

Bacterial and fungal infections generally do their dirty work rather slowly compared to viruses.

So anytime I hear "violent nature of the onset", I automatically think...virus.

Now I will research any viral connections to SLE.

HHV6A (we acquire as adults)triggers the reactivation of EBV and both of those viruses trigger autoimmune MS in genetically prone individuals.
Posted by Jordana (Member # 45305) on :
I didn't know that about the steroids. I thought it was a NEVER thing. Good to know, I have a Medrol dose pack in my bag I never touched even when I was VERY tempted.

At Armin Labs I had a Flow Cytometry done.

T Cells CD3+ percent was normal ( but high normal)
T Cells CD3+ absolute was also normal -- but also high at 1790 where the top range was 1900.

It was CD57 NK that was low at 61.

I did the same thing you did -- I googled SLE and Epstein Barr. It's really a big player - that virus is hugely damaging when it's out of control.

I don't really have the genetics for SLE according to Prometheus. I do have some "higher risk" alleles but they're not that bad; like 1.5x times risk, here and there, just like everyone.

I also have both genes for Celiac but according to the last tests that were run I am not making celiac antibodies. I am not making ANY real known antibodies except for two inconclusive borderline ones. Even the goiter is not hashi's or graves.

It's frustrating because THERE IS SOMETHING WRONG but there is nothing to treat -- except Lyme.

P.S. One theory I've decided to pursue is that I have some kind of "silent" Celiac. That could explain the "patchy" autoimmune process, high tgf-beta 1, iron deficiency and so on. I'm sure there's more going on than that but it seems unavoidable at this point to really get serious about gut inflammation, no matter what the docs say.
Posted by Keebler (Member # 12673) on :
If you have genes for celiac, you HAVE celiac. Are you 100% gluten free, always?

I do hope you can consult with an ILADS LLMD as that is so very important. They can assess for a full range of vector borne infections as well as mycoplasmas.

The labs used for your lyme tests are inferior as they don't test all the bands, still . . . an LLMD who has years of experience and is a good diagnostician would be best.

Mold can cause all the issues you describe, too.

Unattended celiac, as well. And those also often just happen to be worse if someone has a chronic infection.
Posted by Jordana (Member # 45305) on :
That is what I am definitely starting to think. I have the genes -- both of them, no doubt. When I first started looking for answers tests for antibodies were one of the first things conventional docs were all looking at .

They all came up negative, though; and I wasn't sophisticated enough to do my own genetics.

Thanks for your concern and your help, Keebler. I am a patient of an ILADS trained LLMD who is also doing Shoemaker tests, which I am also flunking. [Smile]
Posted by Keebler (Member # 12673) on :
Shoemaker is not ILADS educated. Just important to know that. That is just not what he does. His area is mold. Yes, that is very important.

Cholestyramine, though, can be hard to tolerate so if that happens with you, there are other ways.

Be sure your doctor is looking at the wide range of possibilities such as detailed here;

Treatment options?

And, the first question that now comes back to mind:

are you 100% absolutely positively ALWAYS gluten free? This matters, down to lip balm and avoid pizza restaurants even if they say they have GF pizza, it's not.

And, now with the stupid new law, foods that are not really gluten free can be labeled gluten free. They MUST be CERTIFIED GF, not just say so on their own. Be sure to consult top notch celiac sites.
Posted by Jordana (Member # 45305) on :
Oh no, no way, I've never been fully gluten free except in my serious low carb days and once or twice when I was following the autoimmune protocol for really short periods of time.

I do understand Shoemaker isn't ILADS educated. I haven't read much of what he's written but I'm not convinced he believes Lyme exists.

Back to gluten -- I always felt better when I was lowcarbing, at least after a couple of months. But there are people who believe that a very low sugar diet can damage the thyroid...I've been really confused about WHAT to eat, actually for most of my life!

Really and truly gluten a lifestyle -- that's something I've never really done. I was thinking the other day though -- when I was on the autoimmune protocol for a couple of weeks with root veggies only, this is when my hemoglobin started rising for the first time in years.
Posted by Keebler (Member # 12673) on :
With the genes for celiac, I am appalled your doctors have not shared just now absolutely important it is to be totally gluten free, every minute.

This is good news, though, as now, if you start that within a six months, you may see many improvements. Even a trace, though, can damage the brain for up to six months afterward.
Posted by Jordana (Member # 45305) on :
My docs that tested for celiac were pretty convinced that if you weren't making antibodies you only had the gene, and not the disease.

I think my ILADS doc had the same reaction you did. He'd assumed I was already gluten free.
Posted by Keebler (Member # 12673) on :
Avoid all traces of wheat, kamut, faro, spelt, barley, rye . . . and some oats. (and I many have missed something so go to celiac organizations).

Oats MUST be CERTIFIED gluten free.

Barley and Gluten

How to Start Eating Gluten-Free

Excellent video for starters - scroll down to see many articles about how gluten can damage the brain.

Then go to PubMed for medical literature and search:

Gluten, Brain - 230 abstracts

gluten, neurological - 205 abstracts


and read all links that come up. Some have items on their list that the others do not.

Lip balm, lips sticks, too. And no pizza joint can possibly have a GF pizza if they have wheat flour flying around in their kitchen.

Deli foods, too, if they prepare foods that do not contain gluten in the same kitchen as all other foods, it cannot be GF. They would need a dedicated GF kitchen with separate ventilation system and different employees that would not have gluten on their clothes, etc.

Avoid BIN Foods from the BULK FOODS aisles. The back room where they are fill has all sort of food dust flying around.

This matters. And it is SO worth changing for it.
Posted by Judie (Member # 38323) on :
It sounds like fluoroquinolone poisoning.

Cipro and levaquin change your DNA so you can't heal properly. Your body goes haywire.

I've been dealing with nerve problems and a cascade of other issues since levaquin. It causes your body to break down and get worse over the years.

There was even an FDA hearing about it in November.

"Fluoroquinolone labeling currently has warnings about the risks for tendonitis, tendon rupture, central nervous system effects, peripheral neuropathy, myasthenia gravis exacerbation, QT prolongation and Torsades de Pointes, phototoxicity, and hypersensitivity. But panel members called for stronger wording, with some suggesting the risks be called out with a black box warning."
Posted by Keebler (Member # 12673) on :
While unattended celiac is clearly in the picture and needs full attention, also what else you KNOW NOW and can do something about right now.

Even if some damage may be permanent, and even if you have other questions other possible issues - with attention, you may find some relief and some symptoms lift as you focus now on

1. gluten

2. D-Mannose for the urinary issue

3. limiting mold exposure (if you have indoor plants, get them out of your home. Get rid of any fluffy stuff such as bath mat - a cork one is best - as fluffy things harbor molds, etc.)

4. Floxie Hope and avoid certain stretches, etc.

Echoing Judie's thought, as you have posted that you had recent rounds of these Rx, absolutely consider this. Never underestimate the kinds of damage these can cause. See link here for FLOXIE HOPE.;f=1;t=131279;p=0

Fluoroquinolones (Levaquin, Cipro, Gemifloxacin / Factive, etc.) - LINKS set

For a more detailed look into this topic, it's alarming that so many have experienced devastating effects. It's not unusual at all;f=1;t=130342;p=0

Judie posted this on 25 October, 2014

Topic: 2013 FDA Warning about Fluoroquinolone antibiotics causing PERMANENT damage
Posted by Marnie (Member # 773) on :
Don't weigh CD57 results too heavily.

"Although the CD57 marker has been a helpful tool, it has not been without its problems.

We don't yet understand what confounding variables can skew the results.

Some very sick patients start out with normal or above-normal CD57 levels.

Other patients' levels stay low and never increase with treatment, despite the fact that they are symptom-free and otherwise seem completely cured.

There may be large day to day variation in the CD57 level as I observed in a study looking at twice daily blood draws over 3 days for both Lyme patients and well patients.

The level can increase or decrease as much as 50% within the same day.

So the CD57 level can be a useful marker for some patients but it is not always reliable and consistent.

Because CD57+ NK cell levels are not always reliable markers for chronic Lyme, there is an ongoing search for new biomarkers to aid in the diagnosis of chronic, disseminated Lyme disease and to follow treatment progress.

Dr. Stricker and I recently published a study in the Scandinavian Journal of Immunology comparing C3a and C4a levels of chronic Lyme patients to those of healthy controls, AIDS patients and patients with systemic lupus.

The C3a complement protein level was normal in the AIDS patients, the healthy patients and the chronic Lyme patients.

So, although C3a was shown to be elevated in a cohort of early, acute Lyme disease patients, it appears to be normal in chronic Lyme patients.

***In our study, only the systemic lupus patients had elevated levels of C3a.***

***Other published studies have associated elevated C3a with autoimmunity as well.***

Therefore, the C3a may prove to be a useful marker in differentiating ongoing symptoms due to an autoimmune process versus an ongoing infectious process.

(More useful info. in the link below.)

Celiac is autoimmune...

But there is ***Non-celiac gluten sensitivity*** (NCGS) or gluten sensitivity

In addition...

Some people may have a reaction to

other proteins present in gluten-containing cereals

that are able to inhibit amylase and trypsin (-α-amylase/trypsin inhibitors [ATIs]). Wiki.

Back to "autoimmune"...

In mice, ***IDO2 gene deletion*** does not appreciably affect embryonic development or hematopoiesis, but

***it leads to defects in allergic or
autoimmune responses***

and in the ability of IDO1 to influence the generation of  T regulatory cells.

(Me…autoimmune = too few Treg cells.)

Gene expression studies indicate that IDO2 is a basally and more narrowly expressed gene than IDO1 and that

IDO2 is uniquely regulated by AhR, which serves as a physiological receptor for the tryptophan catabolite kynurenine.

Interestingly, activation of the aryl hydrocarbon receptor (AhR), a transcription factor, which can serve as a physiological ligand for kynurenine has been reported to upregulate IDO2 in dendritic cells.

Since activated IDO1 generates kynurenine,

this observation presents the intriguing possibility of a downstream mechanism to elevate IDO2 levels in dendritic cells where IDO1 becomes upregulated, a prospect discussed further below.

IDO2 has been reported to be overexpressed

along with IDO1 in pancreatic cancer.”

(So… review: IDO1 is activated by IFNy – upregulated to try to control EBV -> KYN and the ligand (binds) is AhR which upregulates IDO2.)

“In conclusion, the findings of this study for the first time indicate that

IFN-γ fails to induce IDO expression

in ***NOD*** dermal fibroblasts; this may partially be due to

***defective STAT1 phosphorylation in IFN-γ-induced-IDO signaling pathway.”***

NOD = ***non-obese diabetic*** (insulin resistant)

Here we show that

***acetylation of STAT1

counteracts IFN-induced STAT1 phosphorylation, ***

nuclear translocation, DNA binding, and target gene expression.

In steps …

HDAC4 *deacetylates* STAT1 to

suppress autophagy

and contributes to diabetic nephropathy.

You don't suppose...this virus:

Link to symptoms, etc.

Oh my...
Posted by Jordana (Member # 45305) on :
For months this is what I really thought it was. But I also had hope that symptoms would improve over time. They *sort of* have. The nerve symptoms are different and less upsetting -- I used to shake right off the pillow at the beginning of this.

Now I have muscle weakness and joint issues and massive brain fog, jaw pain and so on. It's a multi-system illness, whatever it is.

This is another frustration with not being sure I have Lyme. Adding more treatments and protocols ( except maybe detox) -- and prednisone -- can make the poisoning even worse.

I also just found out I have the MTHFR thing happening and I'm a 4-3-53 "dreaded" detoxer.

Sometimes I think I might just be flat out poisoned.
Posted by Marnie (Member # 773) on :
Read my above last 3 links.

First one = Mosquito virus called chikungunya sickens at least 11 in Florida

"Other less common biological abnormalities have been observed such

as leukopenia, elevated liver enzymes, anemia,

elevated creatinine,

elevated creatinine kinase and hypocalcemia."
Posted by Keebler (Member # 12673) on :
prednisone? Why did you mention that? Are you taking prednisone ? Have you in the past couple of years?

If you assume you'd be treating "autoimmune" with prednisone, that's just so unnecessary. Celiac is treated by avoiding all traces of gluten.

if you think you'd need to treat "autoimmune" with ANY Rx, please consult a good naturopathic doctor for much kinder options to support your body.

Certain mushrooms, in a category if MEDICAL MUSHROOMS are excellent help for immune system.

Even if you are a "dreaded" detoxer, some good liver supports can still work. Rather than "detox" think of liver support. Don't go into the hard "detox" mode. Basic good support from nutrients.;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.

Re: any thoughts of taking prednisone:

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
Posted by Jordana (Member # 45305) on :
No! I'm not taking it -- I was just mentioning it related to therapies that are offered for the rare things I *might* have like lupus.

I've stayed away from steroids also in case this was FQ poisoning.

The worst thing is - I am very likely celiac, I am a poor detoxer, I've taken FQ's...and I could STILL have Lyme!!!
Posted by Marnie (Member # 773) on :
At one point my sis had lyme uveitis so bad she could only see the big "E" on the eye chart.

She had to resort/allow steroid shots x2 directly into her eyes.

She was VERY reluctant since she initially was given steroids PRIOR to abx. and did indeed have lyme.

The steroid shots stopped the uveitis dead in its track and completely halted any and all eye sight problems.

The shots in her eyes also did not impact her "mind" - no neuro lyme as a result.

Scroll up...

Mosquito virus called chikungunya sickens at least 11 in Florida
Posted by Keebler (Member # 12673) on :
First, even if you were to be diagnosed with lupus, please don't think that ONLY whatever Rx is the norm would be required. You would take time to sort through it all. And, often lupus is not really lupus but caused by some chronic stealth infection. Lyme is not the only one to consider.

And treatments are not only what the rheumatologists have in their offices. There are many options.

But that is cart before horse right now. Speculation can paralyze you. Back up - with the practicalities for now.

Yes, all that you mention. But it's not the worst thing in the world. Really, even if all that and more.

It will likely help to stop and focus on what you know today, what you can do today.

There is no "very likely celiac" though as you have the genes, you clearly have a lot of symptoms and it's very clear that celiac is on your plate.

That you can deal with.

Yes, you took FQ. And, there are some things to do - or not do - now.

And, although you are a "poor detoxifier" there are still things that can help that. Even just MILK THISTLE or DANDELION.

The thing is that if you take the basics and start one by one with what you can do about those today, then you can sort out other things in time.

All this is just too much to work though all at once.

Foundation work for now is: getting gluten out of your home, your life. That can take a bit of study and relearning. And it's worth it.

Could you focus on that for this week?
Posted by Marnie (Member # 773) on :
Get in touch with...

Send copies of your blood work, list of symptoms, etc. and ask for their help.
Posted by Jordana (Member # 45305) on :
First -- Marnie -- yes, I've wondered endlessly if this was all due to some rarer mosquito-borne virus like Chikungunya, Dengue or even WNV. The climate down there felt great in the beginning but the thing is nothing ever *dies* in the tropics, really, it just rots. Anything I was exposed to there coud have been setting me up for this. Chikungunya is on the plate for sure but there's nothing to do for it but get over it.

I've even considered malaria.

Keebler -- thanks for all your support and suggestions. Yes I can focus on that this week. I hadn't been thinking about detox, liver-clearing, any of those things -- for the past month I've been focusing on "killing."

But, like they always say around here, there's no point in killing if you can't dispose of the aftermath [Smile] .
Posted by Keebler (Member # 12673) on :
You say "Chikungunya is on the plate for sure but there's nothing to do for it but get over it." (end quote)

That is wrong. Very wrong and it just makes me furious that is the prevailing word for the medical world is that nothing treats viruses.

There are MANY things that can help against viruses. Many. One key is to avoid acetaminophen, though as it blocks glutathioine in the liver and in all cells. Another is to do cytokine management with something like Stinging Nettle LEAF.

Just one article of many on this topic:

Chikungunya revives herbal remedies in Antigua

By Gemma Handy - St John's, Antigua - 29 March 2015
Posted by Jordana (Member # 45305) on :
I'm just researching viruses but it seems the natural therapies are hit or miss.

It's very strange to me too that in this day and age real therapies aren't available for something that obviously affects so many people. I can see why there is confusion with cancer but *viruses* should really be something medical science has some answers for by now.

I'm supposed to go get another blood draw tomorrow for EBV and CMV, since the ID doc was only convinced that I might be presenting valid labs for both of those. The first time I went to see him, he said I was post viral and there was nothing he could do. He had no interest or curiosity as to *what* viruses they were, or are.

If the tests are positive you know what he plans to prescribe?

Vitamin C.

Posted by Keebler (Member # 12673) on :
This is my opinion but I think it will be a waste of time, money and further risk of getting "Difficult Patient" marked in big red letters on the inside of your chart by asking for another test for EBV and CMV.

If you keep pursuing the ID doctor, you will likely not get anywhere. They simply do not believe in chronic infections nor do they want to do anything about them.

Also, as there are likely many on board that it is impossible to find / list them all.

Yet, there are "broad spectrum" herbal approaches that can cover many bases. Again, NDs are the kinds of doctors who have that education & training. You won't find help with an Rx, most like.

Yet, many with CFS have used two particular Rx with various success. You might check out the Stanford Univ. doctors who are working with CFS.

Yet, for a while, so that you might focus, I just suggest learning more about gluten and if you don't yet know how to cook at least a dozen dishes that are GF, learning to cook more can be a delicious way to move into the New Year.

Stay focused on that for now.

As for Vitamin C, that is important but there ARE many other ways to approach viruses. You just have to go to the doctors who know how, and they are not going to be MDs, but NDs.

No mega doses of any vitamin, though. Best to get them through foods where you can and some very clean supplements - be sure they are certified GF, not all are. Still no mega doses.

I edited this and it jumps around. I can't fix it, though.
Posted by Jordana (Member # 45305) on :
Thanks everyone for all your help with this question, suggestions and action steps. You all are on the same track as I am with the differential and that's a relief - that means at least I'm on the right track.

My differential is:

Tropical mosquito-vector disease
Celiac ( that's sort of a Yes anyway)
FQ poisoning
Mold toxicity

Or all of the above!!!

I think, like all of you do though, that autoimmune diseases are often due to a stealth infection and conventional treatments are only slowing progression and handling symptoms without getting to the cause. If I am eventually (10 years from now) diagnosed with an autoimmune disease I think I'll STILL believe I have some kind of infection.

Keebler, Marnie -- everyone, thanks for your time [Smile] . There is life saving info on this thread and I really appreciate it.

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