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» LymeNet Flash » Questions and Discussion » Medical Questions » Very, very sick. Not sure what's going on

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Author Topic: Very, very sick. Not sure what's going on
brainfogboy
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I feel poisoned after I eat. Allergy testing and candida testing (stool) proved negative. I know the saying "if you're a hammer everything looks like a nail" so I'm cautious about posting here. It seems every place I post someone tells me I have something (parasites, candida, CFS, etc.), but I'm desperately looking for answers so I thought I'd give this a try.

I feel drugged after eating. My pupils can't hold themselves constricted. I get extremely low blood sugar. My blood pressure and heart rate vary wildly. I suffer from tremendous brain fog and chronic fatigue. I was diagnosed with: Autonomic Dysfunction, Chronic Daily Migraine, Gastric Dumping Syndrome, and Reactive Hypoglycemia. Drug treatments don't work because they aren't addressing the root of the problem.

My liver enzymes are always elevated. My white cell count is always low. I'm bedridden most of the time and have brain fog all of the time. Everything gets worse when I eat and better when I fast. I feel like my body can't rest and recover because it is constantly under attack by "something".

I recently had a very good person enter my life via introduction through my mother. She has been battling lyme disease for quite a while and said she thought I may have it. I'm honored that there are people out there who legitimately want to help and aren't in it for the money.

I also tested for mycotoxins in my urine, but mold testing is always negative. I was supposed to follow up with a doctor specializing in mold but have been too sick over the past week I couldn't make the appointment.

I'm trying to get some other opinions on whether or not people think I have lyme and/or mold. I'm pretty close to suicide, I really can't be let down again. Is there any chance I have this?

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Jordana
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Yes there is an excellent chance that you do.

Don't kill yourself yet. You don't even know what's wrong with you yet, you might as well stick around to at least find that out.

Have you had any Lyme testing?

When you say your pupils can't hold themselves constricted, does that mean you are sensitive to light?

What other medical workups have been done?Have you had an abdominal ct or colonoscopy? Have you had your amylase and lipase tested? How is your thyroid function?

Have you had the rest of your endocrine system checked; cortisol for example?

Have you ever had a head injury? Have you had an MRI of your brain to look for anomalies such as your pituitary function?

Have you had a workup for autoimmune disease like an ANA panel?

Have you ever taken a fluoroquinolone antibiotic? Like Cipro, Avelox or Levaquin?

Some other possibilities besides Lyme might be:

Adrenal dysfunction
Thyroid disease
Type 1 diabetes
POTS
Gallbladder disease
Hepatitis; ABC or autoimmune
Autoimmune biliary cirrhosis
Peptic ulcer disease
Ehlers Danos Syndrome
Chiari
Carcinoid Syndrome
Lupus
Sjogren's Syndrome


Or one or several of the Lyme co-infections.

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Muscle Car55
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Can't rely on allergy testing... What you really have is food intolerance! It's a true sign of Lyme Disease, at least for me it was. I think it has to do with what strain of borrelia we have, which causes these food intolerances. Some say it is due to leaky gut, I think there's more going on, for instance why people get bit by a lonestar tick, they then develop a meat allergy. Scientistis say the meat allergy has to do with the alpha-gal that the ticks transfer over. So really, it may not have to do with the lyme bacteria at all....

It could be possible that you got bit by a tick that didn't have Lyme Disease, but transferred some coinfection over instead... In all honestly though, you probably do have Lyme, I'm just giving an example how complex this disease is with coinfections.

If there's people with Lyme in your area, I would say it's time to get on antibiotics pronto!

I would feel sick and get headaches any time I eat gluten and sugar, major fatigue too. Then I went on a low sugar diet, stripped out the gluten, made me feel so much better. But it didn't stop the infection, which got worse and cause debilitating arthritis in my joints. For borrelia, it can take up to a whole year before you feel the joint pain and once it's there, it stays there.

Personally, I feel the mold bit is so exaggerated. Sure it's not healthy living in a moldy environment, but if you say you're close to suicide and feel seriously ill when you eat, something seriously wreaking havoc on your body.

At first I thought I had some form of candida and exposure to mold in the house too, it just felt that way because I was becoming more sensitive to odors and developing food intolerances. After toying around with this for year, the inflammation set in with my wrists... That's when I knew something was seriously wrong!

4-5 years has passed with taking antibiotics and I'm almost 100% better. I'm no longer lactose intolerant. I can tolerate gluten better, but still feel inflammation any time I eat bread, so I stay gluten free... It took some time, but the antibiotics do work therir magic. Certain ones definitely worked better than others, such as Flagyl. Wish I would of went on IVs, but really who can afford it, insurance wouldn't pay for mine...

Hopefully another year, be 100%.

Tip:Get your bloodwork done at Igenex, regular test came back false negative for me...

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S13
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Yes look in to Leaky Gut, SIBO and especially Gut Dysbiosis. These 3 conditions often tend to co-exist.
Lyme and other co infections can exacerbate these conditions, so you might want to get tested.

Food intolerance is often just the result of leaky gut, sibo and dysbiosis. Just like some of the syndromes and conditions Jordana mentions.

Disease always starts in the gut!
Be very careful with the antibiotics road if you decide to treat lyme or co infections.

Fasting can be a great help to allow the gut to do some healing without bad flora constantly toxifying your body. But you also need to provide nutrients and beneficial bacteria to help repair the gut. Some parasites or SIBO cases do need killing agents to deal with the excessive overgrowth (either herbal or pharmaceutical). But again, too much collateral damage (killing of good flora) can result in a further downward spiral.

To help with some of the food problems you have you may want to start with something like the GAPS diet, SCD or Body Ecology. Eliminating FODMAPS can be of great help as well.

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Muscle Car55
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quote:
Originally posted by S13:
Yes look in to Leaky Gut, SIBO and especially Gut Dysbiosis. These 3 conditions often tend to co-exist.
Lyme and other co infections can exacerbate these conditions, so you might want to get tested.

Food intolerance is often just the result of leaky gut, sibo and dysbiosis. Just like some of the syndromes and conditions Jordana mentions.

Disease always starts in the gut!
Be very careful with the antibiotics road if you decide to treat lyme or co infections.

Fasting can be a great help to allow the gut to do some healing without bad flora constantly toxifying your body. But you also need to provide nutrients and beneficial bacteria to help repair the gut. Some parasites or SIBO cases do need killing agents to deal with the excessive overgrowth (either herbal or pharmaceutical). But again, too much collateral damage (killing of good flora) can result in a further downward spiral.

To help with some of the food problems you have you may want to start with something like the GAPS diet, SCD or Body Ecology. Eliminating FODMAPS can be of great help as well.

brainfogboy use your head...

Going by your username, if you're young "boy" and in pretty good shape. Eat somewhat healthy, lean and not overweight... Well a lot of those diseases Jordana lists just aren't probable.

Had some idiot doctor in my state try to take out my thyroid at the age of 28. She ignored all my symptoms, even the elevated liver enzymes (like you), that she tried to blame me on for drinking alcohol that I don't even do.

I didn't even contemplate her diagnosis, I knew she was nuts.

1st find LLMD, get Igenex bloodwork done if you're second guessing yourself. Remember, even Igenex isn't 100% accurate. Get on antibiotics, take lots of probiotics in between, make sure you take milk thistle and alpha lipoic acid to keep your liver enzymes down, get on gluten free low sugar/carb diet...

I'm at last stage of my treatment, even I'm looking for something to take me to 100%. I'm on flucanazole and cannabis oil. Comes a point with Lyme, if you went undiagnosed long like me, you do have to try other treatment than just antibiotics. John Hopkins Hospital found that flucanzole works well on persister cells... Cannabis as doctors are finding out, is effective against cancer and infections.

But I highly recommend antibiotics first!

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brainfogboy
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Thank you all who commented. The problem is I've seen so many doctors, had so many diagnoses, and been told so many different things I've doubted my sanity on numerous occasions.

I even had my own family deny there was a problem, and drugged me (psych) for years. I have lost all respect for them. When you're physically and mentally run down with illness it becomes nearly impossible to stand up for yourself. I never used to be a push-over.

Here's a link to my IGeneX results. I know they're not always accurate, but do bands have any meaning? Can one diagnose lyme on bands alone?

http://postimg.org/image/r5fm078hf/

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brainfogboy
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"Have you had any Lyme testing?"
-Yes, IGeneX and regular blood tests

"When you say your pupils can't hold themselves constricted, does that mean you are sensitive to light?"
-Yes very. I can't focus on the computer even, and have to sit in dark rooms.

"What other medical workups have been done?Have you had an abdominal ct or colonoscopy? Have you had your amylase and lipase tested? How is your thyroid function?"
-Literally everything. Multiple Abdominal CT scans, colonoscopies, EGDs, EKGs, ECGs, MRIs, MRVs, CT of head with pituitary, thyroid, hormones, enzymes, etc. etc. I have been pushing for tests hard these past few years because doctor's or family don't have any drive to help me. I was taking Adderall just to get to my tests/appointments and now I can't even take that for help anymore.

"Have you had the rest of your endocrine system checked; cortisol for example?"
-Cortisol has been consistently high (slightly over normal upper limit). Had multiple urine collections because the doctor couldn't believe it. Did nothing, said "don't worry about it" even though I was barely able to function.

"Have you ever had a head injury? Have you had an MRI of your brain to look for anomalies such as your pituitary function?"
-Slight concussion when younger, but functioned fine afterwards. MRI, MRV, MRA, everything was done and was normal. Pituitary workup as well, because of my hypoglycemia they wanted to do a CT and other blood work. All normal.

"Have you had a workup for autoimmune disease like an ANA panel?"
-Yes, saw a specialist at Northwestern. All normal.

"Have you ever taken a fluoroquinolone antibiotic? Like Cipro, Avelox or Levaquin?"
-Cipro made me so sick I had to stop it. Not sure if that's a herx reaction or just poisoning by the antibiotic. Z-pack (taken for sinus) seemed to help me more than anything else.

"Some other possibilities besides Lyme might be:"

POTS
Recently diagnosed with POTS, medication isn't helping, root cause isn't addressed. That's why I keep pushing.
Gallbladder disease
Gallbladder removed, caused tremendous digestive problems, big mistake.
Peptic ulcer disease
Gastritis and gastric erosions on and off for years, ant-acids do not work.

[ 02-28-2016, 03:01 PM: Message edited by: brainfogboy ]

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brainfogboy
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Musclecar55:

Gluten and sugar destroy me as well.

What dosages do you recommend for milk thistle, ALA, and Doxy? Especially Doxy, since I'm not sure if you have to take more than recommended for lyme, or just a standard amount?

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bluelyme
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Sounds like you do have root infection causing all of this...how long have you been ill...? The gall bladder and pots ,food intolerance, all point to it...

the bands at igenix can be spirochettes specific maybe some one else will comment...doxy alone will not be enough usually 400-600mg and needs to be combined with sometjing..did you feel better on the Zithromax? ..and did uou feel worse after the cipro?.

You may have been floxed...do not give up ..i know about quality of life diminishing. .but you met that gal for a reason?...are you having any other symptoms have you tested for cpn or mycoplasma? ...check cpnhelp.org it is similar tx

[ 02-28-2016, 06:26 PM: Message edited by: bluelyme ]

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Blue

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brainfogboy
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I felt amazing on zithromax, beginning on day 2 or 3. 2 days after finishing it I fell back into the fog.

Cipro made me very ill while on it, and better when I stopped it. I will never take it again.

I think I've pretty much been tested for everything. The underlying factor is extreme fatigue and brain fog that prevents me from making progress. No one in my life is pushing for answers. For a while Adderall was helping because it was the only friend I had. I feel like I could put together a cohesive plan of attack if I could follow up religiously with doctors and treatments.

I'm not sexually active so things like Chlamydia aren't possible, even though I've been tested for it.

Seriously, how can my parents be more concerned with American Idol and the Walking Dead than their son, who had to quit school because he became too sick to function? Is it my fault? Did I do something to deserve this? What is up with this 'blame the victim' mindset that most people seem to have?

I don't want pity or sympathy, I just want to get better. What the f*ck.

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bluelyme
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Cpn is respitory infection that goes systemic. ..i know how you feel..i just want all of us to feel better...email ilads and they will send you list of docs.

.if not finacially able then buy herbs ,abx online..order bees...educate yourself.. heal ..lyme is gut parasites , coinfections ,viruses ,low immunity, heart and brain involvement, histamines ..

did you have weird ekg ? .mri say punctuated lesions on t1 t2?...weird iron levels ? This site has it all and people who tried it all...maybe a rife machine?...the veterans here can tell you everyone is different responds different to treatment ..

.read mitchells speil on md junction...there is no pancea ,the whoowhoo and cheep work as well as expensive and scientific...from mms to h202 to abx to rife to bvt ,to vray to homeopathy, to ubv to ozone to silver to hbot...try it try it all.

.you are valuable and loved ..even if you parents are tired and bwashed ...ask for a budget look at blood under microscopy. .you can see them...check out thread on that here...pm if you need . Keep your head up

[ 02-28-2016, 06:27 PM: Message edited by: bluelyme ]

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Blue

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Jordana
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When you read your test, you'll see that for all the IND bands it says -- band present with less than calibration standard. That means the bands are there. If you had not been exposed to Lyme, it would be impossible for them to be there in that combination.

I think you have Lyme.

I know at this point it's hard to accept because there are so many people you run into in the beginning of this who won't even acknowledge it. But you have to accept these results and leave all the other stuff behind -- the sense that you've been abandoned or lied to or rejected or ignored.

Leave that behind you because you can get better, but it's hard and you need all your energy to figure this out and get treated. Don't get upset when people don't understand or can't help -- they don't understand, and can't help.

There is a lot of help available out there.

I believe you have Lyme. OK? I am not a doctor but an ILADS doctor would definitely begin treatment for you in my opinion.

Right now you can go to the section of this site, and post a request for a referral at "seeking a doctor."

The other thing you can do is go to "Buhner Healing Lyme" and look for his Lyme protocol on the very first page of his site on the right hand side and start that protocol.

You need treatment. You are young and you can recover. Might as well get started.

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poppy
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The fact that you have had all these tests and no one has found the root cause is frequently the indication of lyme and possibly coinfections being involved. The people who are doing the looking do not usually know anything about lyme, so it is not in the differential diagnosis.

The food intolerance sounds like gastroparesis, something that I just recently developed in the last two months after years of other symptoms. I recently posted a link on someone else's question about eating problems. Look at the threads for last two days and click on that link. Lyme causes this in some of us.

And autonomic dysfunction can definitely be a lyme symptom.

The fact that you felt better on zithromax tells us that this is bacterial.

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TF
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Your Igenex results indicate that you have lyme disease. Most lyme specialists (but NOT regular doctors or ID docs) know to look for IND and + bands specific to lyme. You have a number of lyme-specific bands.

Here is what Burrascano says about reactive bands on the Western Blot:

"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic." (p. 7)

http://www.lymenet.org/BurrGuide200810.pdf

He was a lyme disease pioneer and the most sought-after lyme doctor on the planet before he retired. They came from every country in the world to see him.

Here is what another lyme specialist, Dr. C in Missouri, says to look for in the Western Blot results:

"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.

The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.

Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. . . . In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

[---- from DR C's update from 2005 ---
----The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.----]

This is true regardless of whether it is IgG or IgM.. "

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

I suggest you read Dr. C's entire writeup on the Western Blot so that you thoroughly understand your test results.

Here are your results (I have put the INDs and positive bands together as IND is a weak positive):

IgM: 31, 39, 41, 58, 66, 83-93

IgG: 31, 41

So, as you can see, you have Band 41 positive plus a number of the lyme-specific bands. Specifically, you also have 31, 39, 66, and 83-93. Those are A LOT of lyme-specific bands.

Only one lyme-specific band is enough for a lyme specialist to treat you. You have 4. So, after reading Dr. C's explanation, I hope that you can see that you DO have lyme disease.

I suffered with undiagnosed lyme disease for 10 LONG years. Still, once I got to a doctor who followed Burrascano's Guidelines, I got cured.

The doc is the key to getting rid of this horrendous disease. I can't emphasize that enough. The doc is the key!!!

So, I suggest you get to a good lyme specialist. He will start you on treatment. How you react to treatment (antibiotics specific to lyme) will confirm your diagnosis. Here is Burrascano on the subject of diagnosing lyme disease:

"DIAGNOSTIC HINTS

Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. . . .

Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (p. 7)

So, as Burrascano says above, "Another very important factor is response to treatment..." So, get some GOOD lyme treatment and see what happens. That will convince you.

Look at Burrascano's list of lyme disease symptoms on pages 9-10. Make a list of every single symptom that you have. This list is extremely important together with your Igenex results. It will enable a true lyme specialist to make the lyme diagnosis for you.

When Burrascano says that lyme is diagnosed "clinically," that means by the doctor or clinician. No lyme test is reliable enough on its own. So, lyme is diagnosed by a lyme expert considering all the factors Burrascano names.

We can help you find doctors here. I don't know the good doctors in Illinois, but some folks do. Post in "Seeking a Doctor" and people will send you the names privately.

Welcome to LymeNet!! We will help you here all we can.

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dal123
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Listen to TF, YOU HAVE LYME and need immediate medical attention of the right kind. Meaning LLMD treatment!
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Lymetoo
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According to those results, I would definitely begin your search for an LLMD. Definitely.

As for your food intolerances, Lyme disease can cause big problems with that.

"Gastric dumping" could indicate oxalate dumping. You may be eating foods high in oxlates, then when you stop those foods, your body rids itself of the oxalic acid. Google that .. and foods high in salicylates. I'm the same way: I feel better when I don't eat.... because I am intolerant of many foods.

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

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me
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In my opinion, based on your results, I recommend you find a good LLMD. A good LLMD will do a differential diagnoses (rule out other causes) to ensure he/she gets the correct diagnoses.

Also, Lyme is a clinical diagnosis. Blood tests for Lyme are used as support for a diagnosis. Let us know if you would like a recommendation for a LLMD.

Keep fighting, and best wishes.

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nyclymedout
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What's the dosage and timing to use diflucan to kill persistors?
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Muscle Car55
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quote:
Originally posted by brainfogboy:
Musclecar55:

Gluten and sugar destroy me as well.

What dosages do you recommend for milk thistle, ALA, and Doxy? Especially Doxy, since I'm not sure if you have to take more than recommended for lyme, or just a standard amount?

Daily
------
1x 250mg milk thistle
2x 200mg alpha lipoic acid

This was great at keeping my liver enzymes in check for me.

As for doxy
-----------
2x Doxy 100mg a day.

Just some people have said on here, you'll need other antibiotics to treat various forms of spirochete.

I would recommend doxy+flagyl+ceftin.....

If you're having neuro problems, might want to try minocycline instead of doxy. Penetrates brain barrier better...

Some people have said they've responded well with minocycline+tindamax


To keep your hopes up, stay tuned to Curza's CZ-99... When it will roll out? Hopefully soon!

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Muscle Car55
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quote:
Originally posted by nyclymedout:
What's the dosage and timing to use diflucan to kill persistors?

http://www.ncbi.nlm.nih.gov/pubmed/15337633

200mg... You can probably even do well with 100mg... You have to be careful with diflucan, can build up in blood. Dr Schards who recommends this protocol, says if you start to feel toxic, take 3-4 days off...

Not sure if it's diflucan or just the killing of borrelia, but my energy level is horrible on diflucan!

You can read about the doctor who treats with it here http://www.lymenet.nl/forum/viewtopic.php?t=595

Good article on Lyme MD about it killing persisters...
http://lymemd.blogspot.com/2015/12/lyme-antibiotics-revisited.html

Posts: 267 | From MI | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
Muscle Car55
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quote:
Originally posted by brainfogboy:


Seriously, how can my parents be more concerned with American Idol and the Walking Dead than their son, who had to quit school because he became too sick to function? Is it my fault? Did I do something to deserve this? What is up with this 'blame the victim' mindset that most people seem to have?

I don't want pity or sympathy, I just want to get better. What the f*ck.

As you'll find out as you grow older, people in our society have a hard time believing in something that you can't reach out and touch it. Measure it... Diagnose it... etc...

Borrelia is obviously real, so is climate change and many other things that our culture ignores. To better under stand this, arrogance, greed, and corruption tends to influence what is real in our society and what is not. A lot of people have mental breakdowns, because they can't adjust to this reality that the healthcare system is not set out to cure, but to make money instead.

What else can I say, you'll have to adjust to all this, and even if you have some ignorant parents that don't believe in these sort of things. You'll have to seek out your own treatment if you want to survive.

I feel for you and hope you get better!

Sometimes videos and pictures help break things down better for people that don't understand this disease. Have you showed your parents the documentaries Under Our Skin? Under Our Skin 2?

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brainfogboy
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Thanks guys, I'll keep you updated.
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SickSam
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Dude, dumping syndrome... Yes. One of several of my first symptoms. Horrible. I couldn't eat if I wanted to back then.

Then I was given the antibiotic Bactrim for prostatitis and suddenly I could eat again. That's when I discovered Lyme...

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TF
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Here's a page on dumping syndrome and what to do to try to minimize it. Hope it works for you!

http://www.motilitysociety.org/patient/pdf/Dumping%20Diet%205%204b%202006.pdf

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
droid1226
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Cetirizine. U & ur girl can try it for a buck from Wal Mart. It won't hurt. It's Zyrtec so just don't get the Zyrtec D. Generic is fine.

If it alleviates any/all of your symptoms even a little, then u should go all in on the low histamine diet. If not, try something else. But it sounds likely in ur case specifically, & plenty of patients are just learning about it, & it's working.

I spent tens of thousands on antibiotics, anti parasitics, mold treatments, etc. You name it, I did it. Only to learn about a lack of DAO, an enzyme that breaks histamines down. Sending them thru your intestines & lowering your immune system, brain/gut swelling, general awfulness/fatigue, etc....the symptoms are endless.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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project
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I had the same symptoms after eating, crazy brain fog and fatigue, feeling really toxic. I assumed I was reacting to some food and I tried all kinds of diets, nothing worked.

I then started experimenting with essential oils topically and had some huge herx reactions. I kept at it and my post-meal brain fog was probably one of the first symptoms to go away. I'm not entirely sure what I was killing but if you have Lyme you can get so immunosuppressed that all kinds of bacteria and mold can take over. After eating they all get fed too and I believe that this is what causes the terrible feeling. They start growing / creating more toxicity and you get inflammation from that.

I'm still not 100% better 4 years and various other treatments later, but once I got my bacterial/fungal burden down in the first 6-12 months or so the post meal symptoms went away.

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