posted
My wife's LLMD said my wife may have Mass Cell Activation Disorder, which seems to be a relatively new in the field of medicine and could explain why my wife may allergies to many things. He prescribed a concoction of drugs, some of which we're waiting to arrive in the mail via compounding pharmacy.
Perhaps this might explain some of your symptoms too?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
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posted
Hi <<<<< LymeNet HIT/Allergy Warriors >>>>>,
Just checking in, Haven't been well found out I have a UTI,and ? more? I'll find out Monday afternoon,what all [from blood labs and UA].
A little out of it, so I wont post much else, but wanted to check in, good to see more info here! Thanks Lymetoo,and any others who are participating.
I have had a small amount of relief, since addding some digestive enzymes but still have to be very cautious.
Will check in later again...
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
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posted
Jus' me again,
Haven't posted a lot lately as I'm sure was noticed, haven't been feeling right, and not sure of making sense.
Dr. Appt. tomorrow to discuss my lab results,we'll see what else they found in blood and urine testing last Monday.
Jus' checking in again,and trying to keep the ABX symptoms from imprisoning me in the 'reading room'.
Jus' Silverwolfi here again...
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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bluelyme
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posted
Mast cell disorder seems to accompany lyme and friends.not really sure how it works but i am learning trying nettles and ltyrosing and other aminos ithink it has to do with gut flora
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Take a look at this abstract. It's saying spirochetes do activate mast cells. It's a very scientific abstract, so I suggest scrolling through for the discussion sections which are more readable.
I just found the abstract tonite and it's explaining a lot about reactions in us. If any of you have the patience to comb through it and comment, fine.
It seems that mast cells are central in responding to the bacteria. Meaning those of us with all our allergic reactions are par for the course here.
Gosh, this is a messy bacteria! It activates so much in us.
Posts: 13171 | From San Francisco | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
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Member # 9196
posted
Hi <<<<< LymeNet HIT/Allergy Warriors >>>>>,
Lymetoo, and each contributor, thanks so much for the info' links,and keeping this thread going.
I need to catch up on the links reading, lately I haven't done very well as my brain seems to be wandering w/o me.
I still am very careful what I eat, and am finding digestive enzymes helpful too.
Thanks again so much, there is a wealth of info' here w/ these links!
It's another thing I find so helpful about LymeNet. we are blessed to be able to a lot of info' and ideas here, it would take a very long time to track each link by ones self.
Especially if any of y'all are like me, I try to stay on topic, so many things interest me. And then I'm 'Wolfi-wandering-down-the- bunny-trails.
I'll be back to catch up on more info'!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
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posted
Jus' me here hi there <<<<< HIT/ Allergen Warriors >>>>>,
Perusing some more links, the Saponins, info' is interesting, among others.
I try to limit any soy foods, tho' we occasionally use a bit of Tamari sauce.
So many foods cause issues now, I'm sure the mess the soil and water are in, isn't helping. All the chemical pollutants makes me cringe. We have to grow foods in the soil,and the plants and animals need water as do we.
Jus' Silverwolfi trying to catch up some more...
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
I think (I hope!) I'm getting some of this put together...
Last fall I got hit with crazy abdominal pain sx, ended up in a hospital stay. Gallbladder scan and all biopsies normal, but the pain came back excruciating every time I tried to go off "bland" diet.
(Then I suspected low b12, noticed my tongue swollen and scalloped. I forgot to mention it to doc, but started sublingual methyl b12 anyway.)
Lowering my carbs was triggering the abdominal pain! Saw this referred to as intermittent porphyria, got real nervous when I realized it. Adding Plaquenil helped immensely, was back to my regular low carb diet within a week.
Reading about all of this, low b12 can really screw up methylation, which is connected to histamine intolerance. I had initially wondered if the porphyria wasn't some "extension" of sorts stemming from worsening HI.
I never got any relief from the sublingual b12, but started some of the b12 cofactors to help with methylation and then started on b12 shots. With much caution I have been eating some of the foods on my "no-no" list, so far so good even with some of the worst offenders but I'm being careful not to overdo it too.
This probably deserves a post its own, but my severe urinary stress incontinence issues have greatly diminished since beginning the b12. It's still a little early to tell if it's a fluke, but I just learned that urinary issues can be a HUGE indicator of b12 deficiency so I am hopeful this will tie a lot of stuff together for me.
I'm flying a little blindly since I don't know my MTHFR status, but I think that b12 and methylation issues could be worth exploring when trying to figure out a way through all this histamine intolerance stuff.
Posts: 474 | From US | Registered: May 2014
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Silverwolf
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posted
Hi <<<<< gz >>>>>,
I wish I knew the status or my MTHFR situation, if it is an issue or not.
I use sublingual B-12, but still have pretty rough, IC issues. TxC' and I are both on Low carb, and it has helped get our Diabetes issues under control.
I think HIT, is prolly involved in a lot of the gut issues, Urinary tract problems, and a host of things we can't even imagine at this point.
Thanks for replying, perhaps,w/ so many of us,looking for answers to all these issues, we'll find something that can help!! [not sure anything can help my spelling today].
Thanks many times over for each link that is placed here, to help us learn about these issues!! Somewhere there is an answer to the Lyme Puzzle, and all the symptom-ologies.
HIT/ and allergies is one piece of this puzzle for many of us. Maybe we should call ourselves Warrior-Hunters... warriors hunting for answers,weapons to fight these illnesses and infections.
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
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posted
Hi <<<<< Lymetoo >>>>>,
Just saw the B-12 link above, with the folate hiding B-12 deficiency. My mom had some form of anemia. not sure which kind but I'm suspicious about the Pernicious anemia.
Thanks for the link, Neuro' Doc is having my B-12 tested again, in the Neuro' evaluation blood test.
That link holds really important news!
Thank you again,so much, Hope GZ catches this link!!!
Jus' Silverwolfi here!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
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Member # 9196
posted
Hi <<<<< Lymenet HIT/Allergy Warriors >>>>>,
Bouncing this up again for ease of finding.
Still researching links, and hoping to figure this out.
Thanks for that link on B-12 <<<<< Lymetoo >>>>>, I keep wondering if my Moms anemia and later, Wegners Disease,was because she didn't get enough B-12 and many other Vitamins
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
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posted
Hi <<<<< Lymetoo >>>>>,
That new link PDF is really something, there are some things there that I am researching as we use them a lot in our low carb diet.
They don't appear to be to bad, but I think it is good that we usually peel them.
I've got more Eczema type rash lately,so I think I may try to food journal some, and watch what happens to the rashes,as I do or don't eat certain things.
Much of the symptomology looks like both Lyme candida yeast issues. Perhaps it can even cause some yeast problems? if a body is out of balance?
Thanks for the info' I'm a lookin' for answers!!
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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TX Lyme Mom
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Member # 3162
posted
Silverwolf, Let me introduce myself first before posting my suggestion for you because you won't recognize me since I haven't been active at Lymenet for over a decade. I am friends with both LymeToo and with Robin 123, whom I met in person at an ILADS Conf. many years ago in San Francisco. I'm still active in our Texas Lyme group also, but I seldom visit Lymenet very often anymore unless I need to search topics here for ideas in order to help our Texas Lyme group members.
I skimmed through all 3 pages of this topic to see if anyone had posted a link to the Listen To Your Gut website. (link below) I will be very surprised if their elemental diet product won't help solve your dietary problems on both a short-term and a longer-term basis, even though it was designed for another GI condition -- namely Crohn's and colitis. http://listentoyourgut.com/
Let me tell you about a close personal friend who has used this product since she was diagnosed with a rather severe case of ulcerative colitis last year. After being dismissed from the hospital with Rx steroid drugs for long term use in order to control her GI bleeding and pain, her diet was very restrictive. She had been unable to reduce her dosage of steroids until I told her husband about this elemental dietary formula. She was able to return to work part time just a couple of weeks later after she began using this product for all of meals -- ie, no other solid food at all.
She ate nothing else at all for several months. Eventually, she began eating one meal a day which she carried from home to work for lunch. Eventually after several more months, she was able to start eating her usual breakfast meal at home also, but she still prefers to take this liquid elemental formula for dinner because it is so easily digested when she is tired at the end of a long day at work.
This product helps her get good sleep at night because her body doesn't have to work so hard to digest regular food even though she told me that she could probably switch back to her regular diet at night now also, but she still prefers this liquid diet product instead.
There are several flavor options, but she finds that their simplest naturally sweetened formula with stevia only suits her best because it contains no fructose which her body does not handle well. Therefore, she mixes one scoop of a flavored formula (chocolate or French vanilla) into three scoops of the unsweetened formula because that is just the right balance of sugar for her. This strategy is suggested on the LTYG website.
It's not cheap, but it is indeed cost-effective! My friend credits it with saving her life, and I know her well enough to believe that she is not exaggerating in the least about this because she had been deathly ill before starting this product -- even though she was following a very careful diet and had been taking Ayurvedic herbs as part of her regular healthy lifestyle.
She was able to travel half-way around the globe to visit her family in Sri Lanka for the Christmas holidays by carrying this product with her on her long 24-hour air flight and mixing it with water. That's all she ingested during her entire journey, but she felt well enough to enjoy seeing her family in Sri Lanka (off the southern coast of India) for two weeks this past winter.
There is a lot of helpful information on the LTYG website, including FAQs, etc. I encourage you to spend sufficient time on the website and perhaps to order a free sample of the product to see if you tolerate it. Unfortunately, they do not offer a free sample of the unsweetened flavor, which is the one that most severe patients tend to prefer.
I have tasted a small 2 oz. serving of the product myself, and I can attest that the flavor is quite acceptable and enjoyable, if sipped through a straw as recommended on the website.
TXLM
PS - I'm editing to add that she did succeed in reducing her steroid use gradually, which was her top priority. I don't know how many days or weeks it took for her to succeed in getting off of all of her steroids completely, but if I had to guess-timate, I'd say that it was probably a couple of months, give or take a few weeks. She has been completely steroid free ever since then.
Like many others from her native Sri Lanka, my friend has been a strict vegetarian for several decades, consuming a lot of rice and lentils and chickpea-based proteins, plus vegetables and yogurt, teas and Ayruvedic herbal remedies also. She avoids all sugars and sweet fruits on the advice of her Ayruvedic doctor in Sri Lanka. She is thriving on this diet and has achieved an ideal weight. I'm guessing her age to be in her late 50s, probably close to 60.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< TX Lyme Mom >>>>>,
Sorry,I didn't get any further with this,as has been said,maybe it will help some of the Lyme Folk,who can afford it,and don't have allergies to the various ingredients.
We've been wrestling w/ dental problems, car problems, and an upcoming surgery for Hubby TxCoord, since it tends to rain and pour all at once.
Thank you for the link info'.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
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posted
Hi <<<<< Lymetoo >>>>>,
Thanks for the link, this is a good one, on HIT!!!
I gotta look up the salicylates list again too,hoping it isn't that. Not sure what I'll be able to have it is.
I have to check about Yams versus Sweet potatoes,evidently the Yams fiber count, makes it okay in a lower carb diet. SSome squash,also have enough Fiber to lessen the amount of carbs our bodies take in.
I cannot spell, evidently bodies is 'bofird' whatever that is... LOL! Have to get off for a bit, headache acting up.Will explore some more of the Paleoleap Histamine after awhile
Jus' Sthilverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
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posted
Jus' me Silverwolfi here,
Retrieving this for info', Mast Cell, HIT issues etc.
Fighting Bladder infection UTI crud again, this time am using D-mannose, to help ease things.
Back in a bit...breaking to eat supper...
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
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posted
Hi <<<<< Lymenet family,and HIT/Allergy warriors >>>>>,
Checking into the mast cell activation, looked at some pictures of the skin rash,as I have frequent itchy rashes, gut issues, headaches sinusitis and so on... makes me wonder.
There was nothing noted, in my blood work as to rheumatoid factor, but there are many symptoms i have. Hearing LD can cause or contribute to this, is making me curious about it.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Sorry you are still suffering, Silver! I take D-Mannose twice a day as prevention. No infections in the past 8 yrs since taking it. I used to get them all the time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< Lymetoo >>>>>,
Thanks for the link, I put it in favorites,so hopefully I can find it again.
I'll watch for the MCAS post, I do have a lot of the symptoms. One Exception is that my BP runs high,rather than low[tho' it is controlled by meds]. But I've had a lot of atypical reactions to a variety of issues over the years.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
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Member # 9196
posted
Silverwolf here doing catch-up work...
Hi to <<<<< All LymeNet HIT/Allergy Warriors >>>>>,
Haven't been on as much as I'd like,so just checking in here for more studies.
Jus' that Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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TX Lyme Mom
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Member # 3162
posted
Silverwolfi, I was wondering what had happened to you when you didn't participate in LymeToo's recent excellent topic on HIT and Mast Cell Activation Disorders because it generated a lot of interest and up-to-date resources.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< TX Lyme Mom >>>>>,
Thank you for checking in,and for the link to the current info'.
I've been battling UTI/Bladder issues, and am still kinda miserable. The GP wont consider Lyme Disease issues 'cause he believes that Lab Corp is just about beyond fault if their Lyme testing comes up negative, Which mine did thru' that lab.
I'm pretty certain that it is the source of these darn infections. Since the ornery 'ketes' get into cell walls pretty much everywhere.
LymeToo is excellent with finding info' like this!! Don't know how TxCoord [my hubby] and I would manage with out this LymeNet group.
We have a couple posts on General, about his upcoming knee surgery,and me 'catching up'.
Sometimes when my brain gets lost in the foggy mists, I just read LymeNet info' and don't try to post. During those times I am not sure I make much sense.
I'll check that post out shortly, thanks again for getting the link to it for me!!!
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
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Member # 9196
posted
It's just me, laughing at myself, I was on Lymetoo's Mast Cell post, April 23rd, and didn't remember it. OOPS make that April 26th.
I do believe the Vegas heat is getting to mah brain.
Aarghh... Just Silverwolfi here OwooWooo
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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TX Lyme Mom
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posted
Not to worry, Silver. It happens to the best of us, me included -- and I don't even have the excuse of Lyme-brain to explain my lapses of memory.
What's really embarrassing is re-posting something under a topic which I (or someone else) posted earlier. I blame those kinds of mistakes on too many interruptions, which is the honest-to-gospel truth around our household!
posted
Silver .. were you able to get on D-Mannose full time yet?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
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Member # 9196
posted
Hi <<<<< Lymetoo >>>>>,
Yup, I am full time on D-mannose,and it is on my list permanently of 'cannot do without this herbal supplement...'.
For some reason,this bladder/UT infection has been really hard to kill off. I have up on the subject trying to determine what may be the underlying cause. it is very frustrating.
Some herbs, and Ascorbic acid-Vit.C type can skew the test results. As can AZO/Uristat type urinary pain meds. so any time I have to do the test to check for the UTI, I have to go off the herbals and all.
We did the AZO home test,twice and it was a positive for leukocytes[white blood cells] in urine. The other two test were at the Drs.office/lab.
I still have the symptomology as well, not just the tests. The first time it came up positive,I didn't realize to Drs. office and pharmacy called. I just tho't that the IC problem was acting up more than usual.
The Doctor may suggest I see a Urologist if the next test is still positive. As for me, I think the Borrelia attacked my Urinary tract, it seems to attack everything else.
I also think I'm gonna be doing another elimination diet, wondering what is triggering these issues.
The ABX is horrendous strong stuff,and it doesn't seem to be working. I've had two sets of it. Wont be doing more w/o some way to protect against yeast overgrowth.
I am to see my Dr. in a couple weeks but will probably call in for a lab test for early next week or mid week. Trying to work around TxC's pre-surgery med test schedule and various other matters.
If it is Allergy/HIT or MCAS/D maybe a Urologist could find it??? It is just really frustrating. And I have to go w/o any supplements,or urinary pain product for a few days to test properly.
So that is where I am at, I have an Audiologist appt. tomorrow,and will need the meds., supplements, D-mannose ,etc. to sit thru it while they adjust the hearing aids and test things out.
Jus' SIlverwolfi weary right now.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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I'm not sure a urologist can diagnose MCAD, but he should be well aware of it.
It's all tied in together. .. that is for sure.
What's really scary is that if you're on fluoroquinolones, things can get even worse. So I really hope you can get off the antibiotics very soon.
Praying the audiology appointment goes well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Silver, Bb loves the bladder. You might want to do a Lyme urine antigen test (LUAT). I'll bet you'd find Bb there.
I'm pretty sure that Igenex still offers the LUAT test, even though it's not listed (openly) on their website anymore -- probably for political reasons. That means that you'd probably have to find an ILADS LLMD to order it for you -- just a strong hunch on my part.
Remember, the way that Willy Burgdorfer got infected with Lyme was when urine from an infected lab rat got into his eye. The two best places to find Bb in lab animals is in the cartilage of the ears and/or in their urine or bladder.
Posts: 4563 | From TX | Registered: Sep 2002
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Silverwolf
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posted
Hi <<<<< Lymetoo,and TXLM >>>>>,
The ABX they've had me on is not fluroquinolone, but is dangerous in it's own right.
The info' said that up to several months later, after taking it side effects can occur. Turns out the side effects can occur up to 6 years[ yes,six years later] serious side effects could occur.
Some side effects may be: pulmonary fibrosis, pleurisy type issues, and amblyopia even. I am not a happy camper. They need more stringent warnings.Some of this info' I did not know till this evening.
I just want this mess of an infection to get over and done with.
TX Lyme Mom, TxCoord and I had been talking about wondering if one can find the LD in urine. I had heard there was a test. Thanks for the info'. Now I know it is called LUAT.
Problem is,there are no LLMD's in Nevada,and we've no money to travel right now. And with TxCoord facing another surgery,it'd be awhile.
We have been in a 6 and 1/2 years battle with the VA, over disability compensation, and are trying to make ends meet living on TxC's SSDI.
I fall thru the legal loop holes,and only recently,late summer 2015 finally got Medicaid. (please note,this is informational, not asking for monies here) .Medicaid,such as it is, is the first insurance I've had since we lost our insurance in 2006.
Oh, Lymetoo, thanks for the prayers for my Aud. appt, tomorrow. I am hoping it is a simple adjustment,and wont take long. if it's more than about 15 minutes. I'll be taking a potty break.
Gotta close for now, hoping and praying for some sleep tonight. Haven't had much the lst few nights.
Weary Silverwolfi saying night night for now...
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
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posted
quote:Originally posted by Lymetoo: Silver.. which antibiotic is it?
I'm betting that it's Macrodantin, which is notorious for triggering pulmonary fibrosis. I know a victim who eventually died from pulmonary fibrosis because she was given this drug for recurrent UTIs. http://tinyurl.com/gmn5y7p
Considering that bacteria proliferate in the presence of sugar, be sure that your blood glucose (BG) is as low as possible. Recurrent UTIs can be a harbinger of diabetes type 2.
You might want to invest in an inexpensive blood glucose monitor with cheap test strips. There are lots of options available on the market now (Walmart, Walgreens, etc.). Shop by price of the test strips, not the price of the monitor itself.
Both AZ and NV have relatively liberal state medical boards. Therefore, it will probably be easier to find a Lyme-friendly doctor in those states without having to go to the expense of travelling out-of-state to see an ILADS doctor.
Luckily, I figured out how to find the hidden info from Igenex about the LUAT test, which is now hidden from public view, probably for political reasons -- thanks to the magic of Google. http://www.igenex.com/luatart.htm
Unfortunately, if you're taking strong antibiotics, then the chances of finding Bb in the urine are severely reduced, even if Bb might be hiding out intracellularly within the epithelial cells which line the bladder. In that case, I'm not sure how you can go about proving it.
Since you also have GI problems, do consider that Bb also likes to hide out intracellularly within the epithelial cells of the GI tract. Think about it this way: Bb enters our body via the epithelial cells of our external skin.
Well, the epithelial cells which line our GI tract, bladder and upper respiratory tract are very similar to the epithelial cells of our external skin, for which Bb has a natural affinity. The only reason Bb isn't found there more often is that it's too difficult to collect the samples in those internal organs and also too difficult to identify Bb in samples from those locations.
Posts: 4563 | From TX | Registered: Sep 2002
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo >>>>>,
Sorry, Lyme brain and lack of sleep here, tho't I had the name of the stuff in my reply above.
It is Nitrofurantoin a generic for Macrobid,as far as I could tell from the medication info' on several sites,it is not related to fluoroquinolones. It is now frequently used in place of those.
Between restroom visits and an ankle cramp, I am up way earlier than normal and I didn't get to sleep until late. Gonna be an interesting day for certain.
The info' sheet I got w/ the ABX warns about some possible respiratory issues, and some possible bowel issues, showing up, supposedly only occasionally,and p to several months later...but not the severe mess I read about last night.
So I don't think it's a much better choice than the fluoroquinolones, if at all. Some of the bad side effects can be fairly rare. Unfortunately, I tend to be in the -20% percent of the 20% of- folk,who get unusual conditions.
One example of the 20% percent of the 20% percent of- situations was the extra cervical rib issue. About 20% of folk with Thoracic Outlet Syndrome have an extra rib, in 1982 (according to then available statistics)...
only 20% of those with TOS,and an extra rib causative factor had the extra rib on both sides. Hmm I guess that was 20% of 20% of 20% then. Not that good at math, especially with foggy Lyme-brain and little sleep.
I am wandering and digressing here, apologies, symptoms; I've had Costacondritis,and pleurisy both, And tend to have respiratory issues. I was told that the pleurisy is pretty much Costacondritis in the lower portion of the lungs.
I was blaming the sinus and respiratory issues on the tooth extraction,awhile back. Instead it may have been from one of the sets of ABX?? I'm not sure at this point.
The MVP issues, and some Tachycardia issues have also plagued me recently. I've known about the MVP since '06. The Tachy' issues have only rarely happened,and not since 1994-'95. I was blaming it on recent stresses,such as TxCoords knee condition and upcoming surgery,and biopsy.
I gotta close for now, before this novelette becomes a book. I will however continue researching about MCAD,HIT and Allergy issues.
LD/Bb and Co's, and other Borreliosis infections, seem to be causing so many othere conditions. I think it leaves our Immune systems open to so many problems.
Sleepy Silverwolfi the weary here, BBL...
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Silver, You were posting while I was editing my previous post, so I want to be sure that you see it again.
Also, to do the math, you simply multiply 20% X 20% X 20%. The tricky part is keeping track of the zeros after the decimal point.
If that's too confusing, then multiply 1/5th X 1/5th X 1/5th which equals 1/125th -- or less than 1%. (1/100 = 1%; so 1/125th is even smaller than that.) Or is it too early in the morning after not enough sleep for a math lesson?
Not to worry. Your brain will come back on line again just as soon as the rest of your body finally heals.
Posts: 4563 | From TX | Registered: Sep 2002
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello <<<<< Lymetoo,and TXLM >>>>>,
Lymetoo Aud. appt. went well,minor adjustments,but doing okay so far with hearing aids. Tank goodness appt. didn't take very long.Thanx again for praying!
TXLM, Thanks for the links,will try to read tehm,when I can see better,really weary. Oh,as per my Sig' line i have been monitoring Diabetes since I was Dx'ed in Oct.of '08. my blood glucose acutally averages about 110,a couple days ago it was 96,which is good,for me.
I'll check on those pretty sure the ABX you mentioned is in the same family as the one I mentioned above.
Gotta try to rest for a bit...so I'll be checking in later.
And will try to get back on topic here too. The Lyme Borrelia does so much damage.
Jus' Silverwolfi weary
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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