Eyelash/Eyebrow Loss

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Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 71
   Posted 11/1/2017 12:24 PM (GMT -7)   
Anyone else get this with either Lyme or Bartonella? I was just clinically diagnosed with both recently. I started noticing that I was losing several eyelash and eyebrow hairs about 4 or 5 months ago. ( Pre Abx)

This symptom had me on the wrong track for a while thinking it was something with my Thyroid, especially due to my other symptoms. Severe cognitive/memory dysfunction, brain fog, ear ringing, heart palps, etc. However, I did see an endocrinologist and an integrative physician who specializes in Hormone imbalances and both told me my blood work for my Thyroid is fine. My Progesterone is a little low but the IP just gave me some cream for that to try. In fact, out of all the doctors I saw, he was the first one to ask if I have ever been tested for Lyme and that's when the light bulb REALLY went off in my head.

I had my first appt with an LLMD last month and he clinically diagnosed me despite my negative blood tests. I'm trying to put all my trust in him and the treatment but it's been very difficult.

Anyway, I see a lot of people talk about hair loss but rarely eyelashes specifically. Like I said, out of all my symptoms it's the very least of my problems. It's taking me great mental effort just to type these words right now. I do noticed a little thinning of my hair on my head for the first time in my life, but seems more the eyelashes and brows more then anything. No particular pattern with the brows either.

Just something I'm curious about.


Thanks.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27161
   Posted 11/1/2017 1:50 PM (GMT -7)   
I had the eyelashes thinning - but not the brows...or the hair on my head.


My thyroid labs were good, as well.

They have slowly come back...and now are as good as ever.
The first year was the worst...and after I started treatment - It was another year or so before they started to come back.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 75
   Posted 11/1/2017 2:40 PM (GMT -7)   
Interesting you say that. I have noticed my lashes falling out way more than usual. There are fewer of them and they are finer. I don't know to chalk it up to Lyme or aging. Hear on top of my head is thinning a smidge too. Not sure if Lyme related. I have had and still have a full thick head of hair.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6049
   Posted 11/1/2017 3:01 PM (GMT -7)   
I had loss of both - loss of eyebrows and head hair was my first indication of hypothyroid. I still think there are issues with some of the "normal" ranges that even the integrative and natural practitioners are missing... so don't rule out thyroid altogether just yet.

Many Endocrinologists are also using outdated hormone information, especially for women, so keep that in mind.

Two other possibilities:

Have you been tested for heavy metals? Generally, the hvy mtls cause endocrine disruption and that probably would have shown up but again, the testing isn't a pure science, either.

Another possibility is a fungal or infection issue. Do you have any symptoms that might suggest a yeast/fungal or biofilm overgrowth issue? Do you know what these sx might be?

-p
LYME FORUM MODERATOR

Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27161
   Posted 11/1/2017 3:59 PM (GMT -7)   
Pirouette said...
I had loss of both - loss of eyebrows and head hair was my first indication of hypothyroid. I still think there are issues with some of the "normal" ranges that even the integrative and natural practitioners are missing... so don't rule out thyroid altogether just yet.

Many Endocrinologists are also using outdated hormone information, especially for women, so keep that in mind.


-p


Yes, that's true - the FT3 and FT4 are often not done. And, they need to be in the upper end of the range.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 71
   Posted 11/1/2017 7:07 PM (GMT -7)   
Thanks everyone for your replies. Something keeps telling me not to completely let go of the Thyroid thing. If there is some Thyroid involvement, I cannot find anyone to diagnose it so far.

It appears to be mostly my eyelashes lately. I literally see several fall off in front of me everyday. Every single time I look in the mirror, there's one on my face. Again, one of the less disturbing symptoms but disturbing none the less esp when I don't know exactly what is causing it.

Pirouette, good question about the heavy metals. The integrative doc I saw just sent me for that blood work yesterday. I should know something in a few days. It is possible tho that it could be a combo of these things as well, correct?

I have my blood results for Tsh, tpo, and I believe Ft3 and 4. If I were to post my results here would any of you be willing to help interpret them? I don't remember right now off the top of my head but I do remember thinking that they looked at the lower end of the ranges. I just need to be sure.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 71
   Posted 11/1/2017 7:11 PM (GMT -7)   
Oh and regarding the fungal or biofilm overgrowth issues. How would I find out about that?

Also, don't know if this could be related but lately too, I notice these little white specks sometimes around my eyes or in my eyebrows. Never noticed this before. At first I thought it was just in the mornings after sleep, but sometimes I find one at other times of the day. Thought maybe dried make up but I don't wear much of that these days.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27161
   Posted 11/1/2017 9:52 PM (GMT -7)   
Mergirl said...
Thanks everyone for your replies. Something keeps telling me not to completely let go of the Thyroid thing. If there is some Thyroid involvement, I cannot find anyone to diagnose it so far.

It appears to be mostly my eyelashes lately. I literally see several fall off in front of me everyday. Every single time I look in the mirror, there's one on my face. Again, one of the less disturbing symptoms but disturbing none the less esp when I don't know exactly what is causing it.

Pirouette, good question about the heavy metals. The integrative doc I saw just sent me for that blood work yesterday. I should know something in a few days. It is possible tho that it could be a combo of these things as well, correct?

I have my blood results for Tsh, tpo, and I believe Ft3 and 4. If I were to post my results here would any of you be willing to help interpret them? I don't remember right now off the top of my head but I do remember thinking that they looked at the lower end of the ranges. I just need to be sure.


Yes, do post them. We have a few thyroid savvy members on here.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 1989
   Posted 11/1/2017 11:07 PM (GMT -7)   
If it were me, I would investigate high levels of heavy metals causing hair loss.

thislittlebluebird
New Member


Date Joined Oct 2017
Total Posts : 14
   Posted 11/2/2017 5:00 AM (GMT -7)   
I have a similar thing going on :/ It's pretty mild, but I notice it. I've been tested positive for Lyme, Yersinia, Mykoplasma and Coxsackie- virus. I got weak positives from Chlamydia pneumoniae and Ehrlichia/Analplasma. It could be that the infections are wreaking havoc on the thyroid.

WalkingbyFaith
Regular Member


Date Joined Aug 2017
Total Posts : 417
   Posted 11/2/2017 7:17 AM (GMT -7)   
I've had gaps in my eyelashes for years where there are no lashes. Seems like I used to have some kind of hairless areas in the eyebrows, too. Also had the white specks at base of lashes and some kind of dandruff like condition in my eyebrows. I would tend to rub my eyelids. The skin on my eyelids would be different too, but don't know how to describe it. Not to discount what the others have said, but I think it's relevant to bartonella.

WalkingbyFaith
Regular Member


Date Joined Aug 2017
Total Posts : 417
   Posted 11/2/2017 7:21 AM (GMT -7)   
Georgia Hunter said...
If it were me, I would investigate high levels of heavy metals causing hair loss.


Aren't the Lyme and other pathogens what cause the heavy metal issues in first place? Wouldn't treating and getting rid of the infections fix that?

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 501
   Posted 11/2/2017 7:38 AM (GMT -7)   
I was hypothyroid for 10 years before lyme, and the thinning hair, eyebrows and lashes have gotten worse with lyme. My LLMD had me start splitting my dose of naturethroid between morning and afternoon, and that has helped a lot. Now that I've been treating the lyme since April, the thyroid scores went back to where they were, but still have the thin hair/brow problem.
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

WalkingbyFaith
Regular Member


Date Joined Aug 2017
Total Posts : 417
   Posted 11/2/2017 8:22 AM (GMT -7)   
Kat1000 said...
I was hypothyroid for 10 years before lyme, and the thinning hair, eyebrows and lashes have gotten worse with lyme. My LLMD had me start splitting my dose of naturethroid between morning and afternoon, and that has helped a lot. Now that I've been treating the lyme since April, the thyroid scores went back to where they were, but still have the thin hair/brow problem.


Kat,
You said since treating Lyme your thyroid scores went back to what they were. Do you mean they went back to normal range?

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 501
   Posted 11/2/2017 9:10 AM (GMT -7)   
My mom and sister were also hypo, so it's hereditary for me. It started after my first child was born in my late 30's. I've always been on a low dose of armor thyroid, and the LLMD switched me to naturethroid. He had me take my 1 grain in the morning and added a half grain in the afternoon. Now I'm back to 1 grain. My tsh score where I feel best is usually between .8 and 1.5. Last time it was right at .8. 6 months ago it was at 3.3, which is really high for me.

I was first treated when tsh was at 2.9. A lot of doctors won't treat unless it's over 5. The LLMD checks all the thyroid markers - tsh, t3, t4.
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6049
   Posted 11/3/2017 12:13 PM (GMT -7)   
Mergirl said...
Oh and regarding the fungal or biofilm overgrowth issues. How would I find out about that?

Also, don't know if this could be related but lately too, I notice these little white specks sometimes around my eyes or in my eyebrows. Never noticed this before. At first I thought it was just in the mornings after sleep, but sometimes I find one at other times of the day. Thought maybe dried make up but I don't wear much of that these days.
Hi Mergirl -

Try reading through the following post - it's long and there is a ton of info that might not apply to you but I'm thinking it might be helpful to you. The "white specks" around your eyes, in your eyebrows could be one of two things -

- dried biofilm that is sloughing off, which is waxy and soft but looks just like dead skin. People often think it's from dry skin when it's from yeast/fungus/biofilm growing out of your body and out of an orifice (mouth, nose, eyes, ears, even bellybutton, nipples or genitals). This is actually common for people with severe overgrowth that begins in the GI.

- demodex - EVERYONE has skin mites - teensy tiny little critters that live on our skin, eat the sebum and stuff that is in our pores. For most people, we don't notice a thing and our body's natural defenses keep everything in check. For others, with weaker immune responses, the bacteria created by the demodex can cause some problems and sx start showing up.So, the white specks could be the byproduct of demodex overgrowth - for some people this is why we wake up with the "morning crud" and crustiness in our eyelids or around our eyes. Your tear ducts are a natural washer and help clean out the eye gunk that builds up when we sleep and sometimes this doesn't work well.

I think if it were the second scenario you would have other noticeable sx like itchiness, red yes, increased sx in the dark, etc.

So - I'd read through that info on yeast/fungal overgrowth and be sure to ask any questions you might have - lots of members here have dealt with y/f overgrowth.

-p

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 71
   Posted 11/3/2017 6:57 PM (GMT -7)   
Thank you everyone! Very useful info! You've definitely given me some things to think about. I really feel like something else is going on. What exactly I'm not sure and trying to think clearly enough to try to figure this out is really challenging to say the least.

I should be getting my heavy metals test back next week. Is a hair test or other kind of test better for that than blood?

Pirouette, thank you for that info. I really wouldn't be surprised at all if I had some kind of fungus or yeast overgrowth. I've had GI issues pretty much my whole life. Esp the last year or two. I'm not sure how I would treat it though. My LLMD said to let them know if I get a yeast infection and they may prescribe some diflucan. Other then that, nothing. There's only a very limited amount of Naturopaths where I live and only like one LLMD who I'm seeing now. And the endos aren't good either. Very low quality medical care all around where I live unfortunately. I may have to start looking out of state but that would be a challenge for me currently.

BTW, I do get itching, wide spread. More like creepy crawly feeling like being bit. I thought this was a Lyme or bart symptom. Also get the red burning eyes. Always kind of red but burning occssionally and blurry. Again, thought it was Lyme or Bart.

If this is yeast or fungal overgrowth, how can I tell the difference between that and everything else? How would I treat? Would fungal overgrowth be caused by mold exposure or is this a different thing?

Here are my thyroid panels. BTW, my cholesterol levels are very high. Over the ranges but I was told this was most likely hereditary. I know there is a connection there with Thyroid disorders.

Test done on 10/04/17

Thyroid Peroxidase Antibodies: <1
T4, Free - 1.3 (range 0.8- 1.8 ng/dl)
TSH - 0.99 (range 0.40 - 4.50)
T3 Free -2.9 ( range 2.3-4.2 pg/ml)
Cortisol total (5.1) I believe test was done early afternoon

I had these same tests a couple months prior and the results were slightly different. TSH was actually 0.88 the first time. But these are the most recent.

Thanks everyone. You all are amazing! I just really need to figure this out somehow.

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 71
   Posted 11/3/2017 7:01 PM (GMT -7)   
Oh and definitely get the white specks lately in eyebrows and around eyes. What can I do about this? My worst symptoms are brain fog and memory/ cognitive decline, tinnitus and heart palps. But I guess I just want to know what exactly I'm dealing with here. How many different conditions, etc. All so confusing and really scary. Found more eyelashes today too. sad

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6049
   Posted 11/3/2017 9:21 PM (GMT -7)   
Hi Mergirl -

Well, with the "all-over crawlies" burning/blurry eyes could still be either yeast/fungal overgrowth OR demodex or both.

Tinnitus could be yeast/fungal or biofilm or anti-inflammatory.

Heart palps could also be yeast/fungal or from the Lyme.

The brain fog and cognitive/memory decline or even the heart palps if they're being created by anxiety-- are all recognized as "neuropathy-psychiatric" or neuro-psych issues generally caused by neurotransmitter imbalances. The yeast/fungal overgrowth AND die off once you start using antifungals can both cause the release of neurotoxins like ethanol and acetaldehyde, which can reach your brain through blood vessels that connect gut and brain. These are two of the same chemical toxins produced by high levels of alcohol. They are serious problems.

If your skin issues are that pronounced, it's likely that the overgrowth is originating in your GI.

It doesn't hurt to try to talk w/ your MD in more detail about the sx you think are associated with yeast/fungal overgrowth - and be sure to check that thread I posted above for other symptoms. Educate yourself as much as possible and then list the assoc. symptoms you have and help them understand that the overgrowth usually starts in your gut, especially if you have been taking antibiotics or are susceptible to y/f overgrowth, have had it in the past, or have diabetes/blood sugar management issues or a carb-heavy diet. Focus on the sx and the context and document all of it.

Y/F test:
Skin - I highly doubt that natural antifungals are going to be helpful to make much impact but you can try a few things - try coconut oil and rub it over the skin. That's a pretty good indication of yeast/fungal overgrowth.

GI - make some herbal tea and dissolve a tablespoon of coconut oil into the tea - drink it slowly. If you develop y/f die off sx (they're listed in the thread - very similar to overgrowth sx and so you might have increased gas, distension, pain, discomfort, cramping, burping, headache, nausea, etc.) then it's a good sign of overgrowth. Share the results w/ your practitioner.

Demodex test:
If you have only minimal impact, try adding tea tree oil to it or try purchasing body soap with tea tree oil in it and take a loofah or scrub and gently but firmly "scrub" it into your pores. NOT on your face but try a small area on an arm or your back just to see if it helps. Scrub it a few times a day. If you have no results then it's probably not demodex.

Another thing you can do right now is to heal your gut, improve your immune system and start a comprehensive detox protocol. Here is a link to another thread that has a lot of info about healing gut, treating y/f in GI through additional means (although you do need to be on an antifungal Rx as well) and detoxing gut effectively, which will also help reduce your GI symptoms AND help get rid of some of the y/f overgrowth sx, help reduce y/f die off sx and get you back on track.

/www.healingwell.com/community/default.aspx?f=30&m=3935751&g=3937567#m3937567

If that link doesn't work - try this one and look for my post:
/www.healingwell.com/community/default.aspx?f=30&m=3935751

THYROID
I think a couple of your levels look too low - you might want to repost them in a thread titled specifically about thyroid levels and you'll get a MUCH better - and varied response.

Hope that helps -

p
LYME FORUM MODERATOR

Chronic late-stage lyme—likely infected in '98; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses, GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many supps; cholestyramine

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27161
   Posted 11/4/2017 12:04 AM (GMT -7)   
Thyroid Peroxidase Antibodies: <1
T4, Free - 1.3 (range 0.8- 1.8 ng/dl)
TSH - 0.99 (range 0.40 - 4.50)
T3 Free -2.9 ( range 2.3-4.2 pg/ml)
Cortisol total (5.1) I believe test was done early afternoon

Do you have the range for the cortisol?

I believe the FT3 is supposed to be 3/4 of the top range.
So, yours' should be 3.2 (if I did the math right)
So,your FT3 is low.
Are you currently on thyroid medication?
Hopefully one of the thyroid savvy members will be on and post.

You could start a new thread as Pirouette suggested - with 'thyroid' mentioned in the title.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 71
   Posted 11/4/2017 11:56 AM (GMT -7)   
Thanks Piroutte,
"Well, with the "all-over crawlies" burning/blurry eyes could still be either yeast/fungal overgrowth OR demodex or both.

Tinnitus could be yeast/fungal or biofilm or anti-inflammatory.

Heart palps could also be yeast/fungal or from the Lyme.

The brain fog and cognitive/memory decline or even the heart palps if they're being created by anxiety-- are all recognized as "neuropathy-psychiatric" or neuro-psych issues generally caused by neurotransmitter imbalances. The yeast/fungal overgrowth AND die off once you start using antifungals can both cause the release of neurotoxins like ethanol and acetaldehyde, which can reach your brain through blood vessels that connect gut and brain. These are two of the same chemical toxins produced by high levels of alcohol. They are serious problems."


Couldn't these things also be caused by Lyme and Co? I'm in a pretty hopeless feeling situtation here where I don't know what exactly is wrong with me. So many possibilities. Yeast/fungl overgrowth could be one of them. My regular MD doesn't seem versed on any of these problems. None of the docs around here do.

I've been posting a couple other threads and it sounds like some of what I'm experiencing maybe mold toxcity as well. I really don't know how to sort thru all of this and the docs here are not interested in helping me with it.

With my skin, not only do I find the white specks here and there in my eyebrows and around my eyes, but in the past year or so, I've also developed those little flesh colored and red bumps on my upper arms. Looks like keratosis pilaris, and just in the last 6 months or so, I'm starting to get the tiny bumps on my face as well.

I feel like I have so many different things wrong with me causing all these different symptoms. I'm so tired from going around and around to endocrinologists, dermotologist, rheumotologist, LLMD, I mean name the specialist and I've been for each seemingly seperate problem and I'm on antibiotics now and still can't say for certain what exactly is wrong with me. Just a clinical diagnosis of Lyme disease and Bart. None of the endos here seem to know that thyroid levels should be in the top half of the range, even I knew that before I saw them. They insist my levels are fine.

Should I try to find a functional medicine doc or naturopath? There are very few of those where I live as well. Also, I ask if the fungal infection can be caused by mold exposure because I think that's what I may be dealing with here with or instead of lyme. I have no idea at this point. Yeast also very possible. I cleaned up my diet a lot , infact I don't eat much anymore because I have no appetite lately. Feeling like your brain and whole sense of self is gone will do that to you too. So I'm trying to look at that possibilty as well. And in that case, I'm kind of screwed right now because I do not have the resources to move right now.

I'll take a look at the other symptoms you listed as well. I'll probably be back with more questions. Right now, my mind just draws blanks and when I read, I forget it in like a minute. I'm terrified here. Absolutely. More confused every single day.

Hi Girlie,

Thanks for your response. Sorry, I forgot to post the cortisol range. This is what it says:

CORTISOL, TOTAL
5.1
mcg/dL
Reference Range: For 8 a.m.(7-9 a.m.) Specimen: 4.0-22.0
Reference Range: For 4 p.m.(3-5 p.m.) Specimen: 3.0-17.0
* Please interpret above results accordingly *


I don't understand. There seems to be a gap in time frames there. I believe I got my test done early afternoon, around 1 or 2 pm.

The test before this one, same lab, same doc ordered. My cortisol was 10.1 around 9 or 10 am. Don't know if this helps.

Thanks for trying to help me!

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 1989
   Posted 11/4/2017 2:45 PM (GMT -7)   
Not trying to be a Negative Nellie, but what do you think causes those thyroid and cortisol problems? Refer to my previous post.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6049
   Posted 11/4/2017 3:43 PM (GMT -7)   
Mergirl said...
Couldn't these things also be caused by Lyme and Co?
YES. There is a lot of overlap between Lyme & Co and y/f overgrowth, mold, thyroid, GI distress, heavy metals and MANY other body system failures. It is VERY difficult to "unwind" in order to know what you're dealing with. And if you're like most of us, you are likely dealing with more than just one issue.

Take a deep breath. The conversation is overwhelming and probably more than a little confusing right now because we're trying to draw the right information out of you so that we have a clearer picture of what is going on with you so that we can help you break all this down and move forward.

And we can help you do that too. You're not alone, you're not the first, and while your journey has been miserable and unproductive and costly (in many ways), it's not all that different than many of us here. We have been there, have also been scared and confused and very sick, but we have learned a lot and many of us are HEALING. We're here to help you learn from our experiences so that you can get on a path to healing.

To be very blunt, this is not going to be easy. But you can make good progress if you take things one step at a time and do it methodically. It's best if you can get someone to help you get organized who is there with you - a friend? family member? neighbor? church member? Are there any hospice-type resources in your area?

Mergirl said...
Should I try to find a functional medicine doc or naturopath? There are very few of those where I live as well.
YES. I think this kind of partnership can help you get the antifungal meds you need and also get a proper thyroid dx. You will save yourself time and money if you educate yourself a little bit between now and your appt - we'll help you.

And, while you're waiting to see someone, there are a few additional things that YOU can do on your own to prepare your body and get started.

So - let's start the conversation over. I'll bring over pieces from my previous posts and place everything here so it's a little better organized.


Week 1

First - schedule an appt with a naturopath/functional doctor. Be specific about why you're interested in working with them - you want to address GI, yeast/fungal, mold and thyroid issues. This is a pretty common group of problems presented to them. Obviously, it's their role to "officially" diagnose you but this short list lets them know you have some general understanding of what your symptoms are that suggests what is going on.

GI
GI focus is something you can do in a straight-forward way on your own and can eliminate a few sx AND likely reveal more information for you to then use to figure out next steps. These are also steps you can and should start TODAY:

Regardless of what your official diagnoses might be, you won't make much progress with any treatment without a very healthy GI and immune system (since 70% of our immune system lives in the mucosal lining of our GI and the GI needs to properly absorb nutrition and meds and support). Almost all of us need to clean shop in order to get started. Use this time to make some progress.

Here is the GI post I already linked to:
/www.healingwell.com/community/default.aspx?f=30&m=3935751&g=3937567#m3937567

If that link doesn't work - try this one and look for my post:
/www.healingwell.com/community/default.aspx?f=30&m=3935751

Mergirl said...
I cleaned up my diet a lot , infact I don't eat much anymore because I have no appetite lately. Feeling like your brain and whole sense of self is gone will do that to you too.
You won't heal from anything if you aren't feeding your body. You have to fight through the lack of appetite - it's likely caused by all the disruption going on in your GI and the y/f overgrowth also likes to hijack shut down appetite.

Set a timer to remind you to eat 5 times a day - small portions. Eating less but more frequently will place less demand on your GI to process a huge meal all at once, help you absorb nutrients better, help balance blood sugar, smaller meals are easier to manage if you're struggling with appetite, and also keep you focused on a a more complex schedule once you start adding in more components of teratment.

Follow the information in that post above for what to eat and what you cannot eat - in order to get started.

Also, go ahead and try applying a nice coat of the coconut oil on your face and arms after you shower. This isn't going to eliminate much of the overgrowth but might help reduce some symptoms.

BINDERS
Also - NOW is the time to start detoxing your GI, which is also absolutely critical in order to heal GI and get the y/f overgrowth under control and remediate any mold in the body.

Start with some modified citrus pectin (MCP). Start taking tiny doses - like 1/4 teaspoon once/day. If you don't have any serious issues, take the same dose twice a day... and then slowly increase each dose over time. Rules also include: ALWAYS drink a lot of water before, during and after your doses. And ALWAYS take the binders 2 hours away from ingesting anything else except water - or the binder will drag it out instead of the toxins.

The MCP will help remove the toxins and debris from your GI from the abx treatment, and from yeast/fungal overgrowth, is likely to remove mold toxins and will likely help reduce the neuro-psych issues that result from all these neurotoxins getting into the brain! It was probably the most important part of my protocol. This is why you need to start very slowly - you can herx from the binders if you go too quickly. A little herxing is OK but you don't want a lot of herxing. Too much herxing - stop for a day and then restart with a lower dose.


Week 2

PREPARE
Now that you have some GI healing and detoxing underway and are still waiting for your appt, use week 2 to read through these posts again, take each category of your likely diagnoses and learn as much as you can and jot down questions for you appointment.

Please bookmark or copy and paste these posts into an email to yourself or into a Word or text document so that you can keep track of the information.

Get ready for your appt by listing your symptoms in the following categories - bring a copy of this to your appt to have them make a copy for your records. Use a scale from 1-5 to indicate how severe they are, how frequent they are (don't worry about getting things in the right category - just get it down on paper). You will need to try to update this daily so that you can keep track of your sx. There is a nice sx spreadsheet in the "New to Lyme?" thread at the top of the page that you can download and use if you like spreadsheets.

GI
Endocrine
Muscles
Joints
Heart
Psychological
Skin
Liver/kidneys
Other

Buy a planner - the ones on sale right now are only for 2018 but use the "notes" sections for the remainder of 2017. Use it to document your protocol - what you take/how much/when. Use it to document your daily symptoms.


Weeks 3 - 5
It's not entirely necessary to have cut-and-dry diagnosis of y/f overgrowth or mold or thyroid to get started. I can almost guarantee you that a functional specialist will clinically diagnose you with at least the first two - you've shared enough info that most people on the forum could do it. So try focusing your energy less on absolute diagnoses at this point and refocus on preparing your body to take the next steps towards healing. A few things will likely bring some relief, too.

With your GI in a little less chaos and healing underway, start making some progress for addressing the yeast/fungus.

The other sx you describe (the flesh-colored and red bumps) are also classic signs of yeast/fungal overgrowth and demodex issues (because they sometimes go hand-in-hand). Often, if you get the y/f under control, the demodex becomes less of a problem.

Hopefully you've had your appt by now and can get some Rx antifungals - you will need to start the antifungal process slowly and methodically but eventually work up to optimal antifungal and binder doses in order to hit the y/f hard and fast.

I forgot to actually link to the yeast/fungal information in the previous post - it includes a LOT of information but also explains y/f symptoms and how to treat them. Try to read through this BEFORE your appt so that you'll know what to ask for.

All the sx you're experiencing is exactly what I experienced on my face, chest, arms. That's why I'm certain y/f is one of your challenges.

Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275


Week 6
MOLD
Once you have reduced your yeast/fungal overgrowth and have managed the die off pretty well without a lot of additional sx or significant herxing, then it's time to start making progress on the mold.

You probably already have a good start with the mold after being on the MCP binder for a few wks. The following website has a lot more info on mold and can help you identify remaining symptoms and treatments:
www.survivingmold.com

Mergirl said...
Also, I ask if the fungal infection can be caused by mold exposure because I think that's what I may be dealing with here with or instead of lyme.
NO, it is not likely that y/f is CAUSED by mold but there is some relationship, IMO. But also, anything that challenges your immune system and can dominate it will allow other opportunistic pathogens to also get a foothold and cause problems. This is one reason why many of us are dealing with multiple causes of our sx.

******

Your ND or integrated doc will likely start supporting thyroid and adrenals, explore heavy metals and other things that might pop up in her evaluation.

And once you have made progress with the above issues, you can move forward with Lyme & Co tx... I think you're a good candidate for herbal protocols. No need to go back to abx if you don't want to. You can also try other remedies like RIFE and IR sauna, etc. You'll have time to investigate all this after your brain is working a little better!

Hope this is helpful...

-p

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 71
   Posted 11/4/2017 6:55 PM (GMT -7)   
Hi Pirouette,


First of all, thank you so much for taking the time to post. It's hard for me to absorb and retain all of it but as you suggested, I copied and put it in an email to myself to refer back to.

Unrelated question, but how do we post quotes in our replies?


Unfortunately, I don't really have anyone that you mention that could help me with this. That's part of the problem really. No one understands. I'm actually staying at a Family members house and actually, that may be part of the problem. I suspect there is mold in the house. I need to move out, I know that but I just can't right now. No where for me to go and I don't have the financial resources and I can't work, yet. I need to get well enough to work but I fear that won't happen if I'm trying to heal here. So I'm in quite the predicament. So , I have to try to figure this out on my own somehow but I'm so frustrated that my brain won't work. Thanks for telling me you understand too and that there is hope. I hope there is for me anyway.

So, OK, schedule an appt with Naturopath or Functional med doc. Is one more preferable to the other? It's hard to decide on who. I've already looked over the ones in my area. I live in a very small place and there's not a good selection here. And I don't seem to have the best luck in general with docs. I can try to find one a little further away but not much further. I cannot drive in my condition lately ( I miss it so much) and usually have to pay for rides to places which can get very expensive. I'll try my best to pick one among the ones available here though.

Thanks for that GI link. I'll do whatever I can right now.

I can get some coconut oil, no problem. I was actually using it for a while both taken orally and on my skin but I kept forgetting to buy more when I ran out :/ Question about the MCP, I just looked up a few on Amazon and some look a bit pricey. Is the power better then caps? My budget is a huge issue and more on that in a minute as it relates to the mold. Is there a specific kind of MCP that you recommend that is easy on the wallet but still effective?

How would I know I'm herxing from taking the binders? TBH, I've been on abx for 3 weeks now for my clinically diagnosed Lyme and I'm not sure I've experienced any real herxing. Just nausea a few times and a little shakiness here and there but could have been from another med. Some frequent urination too the first week or two. But as far as I can tell that's it. I'm not sure I've been herxing for Lyme which only adds to my doubts at times.

As far as the mold, will doing all this be helpful even if I think I'm still being exposed on a daily basis? I got rid of one source of it but right now that was all I can do. As I think I mentioned, I'm staying at a Family members house who doesn't believe or want to hear about the mold problem and I literally have no where else to go. I keep being told I need to leave the house if I want to get better but I have no possible way of doing that right now. I'm really stuck. So will this still help if I'm living in the same environment? Money is an issue but do you think it would be worth it in the meantime to invest in a couple of air filtration units? Again, I can't afford the best or even close to it. But if it would make a difference for me until I'm well enough to get out then I think it's worth it. Your thoughts? Should I go so far as getting a respirator to wear in the house instead? I mean I really don't know. I posted another thread about occasionally finding a little blood in one nostril mixed in with mucus. Someone said its def a mold symptom. Only happens once in a while but if that's true then it's still an issue.

Thanks for the surviving mold link. I will review it again but it seems like the number one rule is to get out of the environment. In my case, there was a direct source and I believe a continued exposure. But like I stated, I really cannot do anything about that. If it were my house and I had the means I wouldn't hesitate to get it tested, remidiated, etc. But it's not. At least if I were renting I could hold the landlord responsible but that's not the case. Also , so many of the mold symptoms sound like Lyme. It just gives me more doubts at times about which I'm dealing with or both. I'm just in a really confusing place right now.

I hope I didn't ask too much so far. I'm sure I might be forgetting a few things I wanted to ask as well but I guess that will do for now. I feel like if I can get some brain function back I can really do this.

Also, one more question. If this is neuro Lyme where it is effecting my cognitive function and memory. Along with the yeast/fungal and mold, I completely agree with those assessments as well, would herxing be a worsening of those symptoms? Brain fog , unable to think, tinnitus, etc? So me its all those issues and not so much pain or fatigue itself. I'm always just tired because I don't sleep nearly as much as a normal person should and I've tried everything for that. But I suspect that won't improve until these other issues do.

Could adrenal fatigue also be another part of this? Not to confuse things further. But earlier this year I did a taper of oral steroids, not knowing any of my sx could be Lyme and what that would mean. At that time I was having a lot of joint pain and some swelling and wide spread pain. Of course I was given the fibro diagnosis and an orthopedic suggested I try the steroids. Huge, huge mistake. Got inexplicably ill and haven't been nearly the same since. But most of my sx started both before that and before I found the moldy as unit. But I know mold Is still present on the house.

I just don't know what to do. I get freaked out because tomorrow I'll have to read my posts all over again because I forget what I said and asked.

I know I keep saying it but I'm do scared. I guess I better start searching for a ND or FMD. Just have so little faith in any kind of doc these days. I wish I lived somewhere with a better selection. I know help from a goof one here will make s huge difference for me right now.

Thank you again, Pirouette. This really does mean so much to me right now. You're so kind.


Mergirl

Mergirl
Regular Member


Date Joined Oct 2017
Total Posts : 71
   Posted 11/4/2017 6:58 PM (GMT -7)   
Oh one more question,

I do have some activated charcoal. I have taken it some here and there but not consistently everyday . I need to better time it away from my abx and supps but would that be something to take until I get the MCP? Is the MCP better you think or are they pretty much the same?


Thanks smile
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