Re: Weird problems with LDN

[Guest guest]

if you have lyme, this LDM will not kill the lyme, you need antibiotics, marshal

protocol and Rife. The LDN will help your immune system, but do nothing for the

lyme.

Is this normal? I'm the person who had the extreme hyperthyroid

reaction after trying 1.5 mg. I thought I had a heart attack but my

stress test was okay. I stopped the lugol's iodine and cut my thyroid

in half at my doctor's suggestion. I think that worked so far.

I've been on only about .50-60 mg. I've been opening a .75 capsule,

removing some and working my way up - with my doctor's approval. When I

go higher I get short of breath again, so I think I'll probably have to

cut out my thyroid all together.

On the LDN I've been getting more and more forgetful and spacey. I mean

I feel stupid! I almost drove away from the pump with my gas cap off

today, and I'm just doing really unbelievably spacey things. I'm also

in much more pain in my joints and neck. I've actually been sleeping

better, but I'm getting more fatigued than usual by late afternoon. At

times I think it's helping my bladder though, as I think I'm feeling

the need to urinate less frequently. Is any of this normal? Will it

pass?

I don't have ms, but I do have lyme disease, babesia, viruses,

hashimotos thyroiditis, fibromyalgia, chronic fatigue, arthritis in my

neck, etc.

I'm on such a tiny dose! Should I try to take more, or stay at this

dose?

Any input or advice would be appreciated.

[Guest guest]

Hi Ron,

Thanks, for your input, but I'm aware of the need to kill the lyme.

I'm sure you're aware that part of overcoming any illness including

lyme is getting the immune system to function well. If you use rife,

than I'm sure you're aware that the lyme community considers

supporting the immune system an essential part of the overall

approach to wellness. That's what I'm trying to do with the LDN.

I still would appreciate some advice and support that addresses the

questions I posted.

Thanks

>

>

>

> if you have lyme, this LDM will not kill the lyme, you need

antibiotics, marshal protocol and Rife. The LDN will help your immune

system, but do nothing for the lyme.

>

>

>

>

>

> Is this normal? I'm the person who had the extreme hyperthyroid

> reaction after trying 1.5 mg. I thought I had a heart attack but my

> stress test was okay. I stopped the lugol's iodine and cut my

thyroid

> in half at my doctor's suggestion. I think that worked so far.

>

> I've been on only about .50-60 mg. I've been opening a .75 capsule,

> removing some and working my way up - with my doctor's approval.

When I

> go higher I get short of breath again, so I think I'll probably

have to

> cut out my thyroid all together.

>

> On the LDN I've been getting more and more forgetful and spacey. I

mean

> I feel stupid! I almost drove away from the pump with my gas cap

off

> today, and I'm just doing really unbelievably spacey things. I'm

also

> in much more pain in my joints and neck. I've actually been

sleeping

> better, but I'm getting more fatigued than usual by late afternoon.

At

> times I think it's helping my bladder though, as I think I'm

feeling

> the need to urinate less frequently. Is any of this normal? Will it

> pass?

>

> I don't have ms, but I do have lyme disease, babesia, viruses,

> hashimotos thyroiditis, fibromyalgia, chronic fatigue, arthritis in

my

> neck, etc.

>

> I'm on such a tiny dose! Should I try to take more, or stay at this

> dose?

>

> Any input or advice would be appreciated.

>

[Guest guest]

I forgot to mention the rining in my ears - I used to have it bad,

but it's been much better for some time. I'm having it again -

particularly throughout the night, and suddenly in the daytime it

will start up for a few minutes.

> >

> >

> >

> > if you have lyme, this LDM will not kill the lyme, you need

> antibiotics, marshal protocol and Rife. The LDN will help your

immune

> system, but do nothing for the lyme.

> >

> >

> >

> >

> >

> > Is this normal? I'm the person who had the extreme hyperthyroid

> > reaction after trying 1.5 mg. I thought I had a heart attack but

my

> > stress test was okay. I stopped the lugol's iodine and cut my

> thyroid

> > in half at my doctor's suggestion. I think that worked so far.

> >

> > I've been on only about .50-60 mg. I've been opening a .75

capsule,

> > removing some and working my way up - with my doctor's approval.

> When I

> > go higher I get short of breath again, so I think I'll probably

> have to

> > cut out my thyroid all together.

> >

> > On the LDN I've been getting more and more forgetful and spacey.

I

> mean

> > I feel stupid! I almost drove away from the pump with my gas cap

> off

> > today, and I'm just doing really unbelievably spacey things. I'm

> also

> > in much more pain in my joints and neck. I've actually been

> sleeping

> > better, but I'm getting more fatigued than usual by late

afternoon.

> At

> > times I think it's helping my bladder though, as I think I'm

> feeling

> > the need to urinate less frequently. Is any of this normal? Will

it

> > pass?

> >

> > I don't have ms, but I do have lyme disease, babesia, viruses,

> > hashimotos thyroiditis, fibromyalgia, chronic fatigue, arthritis

in

> my

> > neck, etc.

> >

> > I'm on such a tiny dose! Should I try to take more, or stay at

this

> > dose?

> >

> > Any input or advice would be appreciated.

> >

>

[Guest guest]

>

> Is this normal? I'm the person who had the extreme hyperthyroid

> reaction after trying 1.5 mg. I thought I had a heart attack but my

> stress test was okay. I stopped the lugol's iodine and cut my thyroid

> in half at my doctor's suggestion. I think that worked so far.

>

> I've been on only about .50-60 mg. I've been opening a .75 capsule,

> removing some and working my way up - with my doctor's approval. When I

> go higher I get short of breath again, so I think I'll probably have to

> cut out my thyroid all together.

>

> On the LDN I've been getting more and more forgetful and spacey. I mean

> I feel stupid! I almost drove away from the pump with my gas cap off

> today, and I'm just doing really unbelievably spacey things. I'm also

> in much more pain in my joints and neck. I've actually been sleeping

> better, but I'm getting more fatigued than usual by late afternoon. At

> times I think it's helping my bladder though, as I think I'm feeling

> the need to urinate less frequently. Is any of this normal? Will it

> pass?

>

> I don't have ms, but I do have lyme disease, babesia, viruses,

> hashimotos thyroiditis, fibromyalgia, chronic fatigue, arthritis in my

> neck, etc.

>

> I'm on such a tiny dose! Should I try to take more, or stay at this

> dose?

>

> Any input or advice would be appreciated.

The only advice I can give you at this stage is to get thyroid labs

done include the Free T3 Free T4 and TSH it's very hard to give advice

with no labs in front of you, even though you say you went really

hyper. When I first starting taking LDN it gave me palpitations nausea

and foggy brain but I hadn't gone hyper and it only lasted for about a

week or so.

Suggestion book to see your doctor and get your labs done.

Also the ringing in your ear tinnitus sounds more like a hypo symptom

than hyper or it could be totally unrelated so maybe you should get

that checked out also. Sorry can't be of much help at this stage.

Best wishes

Lolly

[Guest guest]

Hi Angie,

I would get this checked out by your Doctor if it is troublesome there

maybe something else going on.

also if you visit here you might get more input about your thyroid

issues and LDN.

http://www.ahsta.com

Lolly

>

> I forgot to mention the rining in my ears - I used to have it bad,

> but it's been much better for some time. I'm having it again -

> particularly throughout the night, and suddenly in the daytime it

> will start up for a few minutes.

[Guest guest]

I also have Lyme, babesiosis, both kinds of ehrlichiosis, and bartonella.

I've been treated for all over the course of several years and improved

greatly. I also had 2 viral reactivations during the course of that

treatment (EBV, CMV). Now, if I feel a viral reactivation (low-grade

fever, increased fatigue), I take pau d'arco until it passes. I was also

dx'd w/fibromyalgia, and have degenerative joint disease in my back

and knee, and an autoimmune skin condition

(Graham-Little-Piccardi-Lasseur Syndrome).

I've been on LDN for about a month. The first 10 days, I took 1.5 mg

and did that until the sleep disturbances (frequent awakenings) passed -

then started 3 mg and have been there for ~3 wks. We suspected

Hashi's yrs ago since my thyroid (TSH) was high, requiring a thyroid

med for 2-3 yrs, then I went hyper on the smallest dose of it and stopped.

They were never able to capture thyroid antibodies in my blood, but

ultrasound showed a "small thyroid." My son has Hashi's. Oh, and

I'm on 50 mg/day fluconazole - just in case of candida (diet's pretty

good, so I don't think so). Am overweight and losing lbs on the blood

type diet, which is no small feat given doc's restricted my exercise to 1/2

of what it had been prior to developing severe IT band pain.

During the 1st week or so of LDN, I also had increased tinnitus - now, it

only occasionally acts up. The arthritis in my shoulders, hips and elbows

is pretty much gone, helping me sleep much better. For the past week,

I've got 1 knuckle joint that is very inflamed and sore - that could be the

Lyme and/or bartonella, I guess. So far, the LDN isn't doing anything

for my muscle pain (am in physical therapy for severe IT band pain - they

have worked out "knots" above my knee and near my pelvis).... I've had

days where I've felt more energy, but also had some days where I've

been more tired than usual and actually have taken 2 naps those days!

(I'm hoping that is just a sign that the LDN is really working and my

body's exhausted from the shift in gear;)

I'm waiting until I stop having the occasional sleep disturbance and

tinnitus before going up to the 4.5 mg dose. Not sure if this helps you -

just wanted to share the above, but also to validate what it sounds like

you realize - that anything that supports proper immune function may

not be able to work properly in the presence of active infection. Oh, and

I pulse artemesia annua for the babesiosis - despite several long, intense

treatments for it, I don't think we ever really get rid of it - the art annua

seems to be able to keep it at bay.

Sue

********

Posted by: "grball628" Angie@... grball628

I don't have ms, but I do have lyme disease, babesia, viruses, hashimotos thyroiditis, fibromyalgia, chronic fatigue, arthritis in my neck, etc. I'm on such a tiny dose! Should I try to take more, or stay at this dose?

Thu Jul 3, 2008 10:11 pm (PDT)

Hi Ron,Thanks, for your input, but I'm aware of the need to kill the lyme. I'm sure you're aware that part of overcoming any illness including lyme is getting the immune system to function well. If you use rife, than I'm sure you're aware that the lyme community considers supporting the immune system an essential part of the overall approach to wellness. That's what I'm trying to do with the LDN. I still would appreciate some advice and support that addresses the questions I posted. Thanks

[Guest guest]

Hi Lolly - thanks for your answer. I'm certain it's the LDN because

I took a night off from it, and I felt better the next day. I could

think better for one thing. I know my doctor will just tell me to

quit taking it, and I don't want to give up on it if this is just a

temporary thing. Does what I described sound really unusual for

people taking the LDN?

> >

> > I forgot to mention the rining in my ears - I used to have it

bad,

> > but it's been much better for some time. I'm having it again -

> > particularly throughout the night, and suddenly in the daytime it

> > will start up for a few minutes.

>

[Guest guest]

Hi Lolly - I just found your second post - thanks for writing! I did

have normal labs except the TSH was .o1 and the minimum normal is .4.

The doc thought it was the combination of the lugols iodine I'd been

taking for a while, with the LDN. I did stop the lugols, and I do

seem pretty much back to my normal self with the heart symptoms and

shortness of breath-until I up my dose of LDN.

I had the tinnitis for many, many years but it's been much better.

It seems like it comes on shortly after I take my LDN. I'm pretty

certain the LDN has something to do with the reappearance.

I'm really concerned about the spaciness, but I'm glad to hear you

experienced that yourself. I've been on LDN since June 8, and it's

been increasing probably over the past couple weeks.

I'm also concerned about the pain, but I see people talk about

increased stiffness, so I'm hoping this will pass.

> >

> > Is this normal? I'm the person who had the extreme hyperthyroid

> > reaction after trying 1.5 mg. I thought I had a heart attack but

my

> > stress test was okay. I stopped the lugol's iodine and cut my

thyroid

> > in half at my doctor's suggestion. I think that worked so far.

> >

> > I've been on only about .50-60 mg. I've been opening a .75

capsule,

> > removing some and working my way up - with my doctor's approval.

When I

> > go higher I get short of breath again, so I think I'll probably

have to

> > cut out my thyroid all together.

> >

> > On the LDN I've been getting more and more forgetful and spacey.

I mean

> > I feel stupid! I almost drove away from the pump with my gas cap

off

> > today, and I'm just doing really unbelievably spacey things. I'm

also

> > in much more pain in my joints and neck. I've actually been

sleeping

> > better, but I'm getting more fatigued than usual by late

afternoon. At

> > times I think it's helping my bladder though, as I think I'm

feeling

> > the need to urinate less frequently. Is any of this normal? Will

it

> > pass?

> >

> > I don't have ms, but I do have lyme disease, babesia, viruses,

> > hashimotos thyroiditis, fibromyalgia, chronic fatigue, arthritis

in my

> > neck, etc.

> >

> > I'm on such a tiny dose! Should I try to take more, or stay at

this

> > dose?

> >

> > Any input or advice would be appreciated.

>

> The only advice I can give you at this stage is to get thyroid labs

> done include the Free T3 Free T4 and TSH it's very hard to give

advice

> with no labs in front of you, even though you say you went really

> hyper. When I first starting taking LDN it gave me palpitations

nausea

> and foggy brain but I hadn't gone hyper and it only lasted for

about a

> week or so.

>

> Suggestion book to see your doctor and get your labs done.

> Also the ringing in your ear tinnitus sounds more like a hypo

symptom

> than hyper or it could be totally unrelated so maybe you should get

> that checked out also. Sorry can't be of much help at this stage.

>

> Best wishes

>

> Lolly

>

[Guest guest]

Sue,

Thank you so much for sharing that. That really helps! Are you

currently treating the lyme? I'm wondering how you did it.

It does sound like you're getting some positive results from the LDN.

That's so great that your joint pain has reduced. Did you feel an

increase in pain levels at first? I'd be thrilled if the joint pain

goes away!

I would think that the LDN would help the body conqueur some of the

infections such as the viruses. Could your viral symptoms be your

body staging a fight?

I've been thinking about p'au d'arco and I think I'll pick some up. I

had a severe heart reaction to the artimisinin, so I'm going to have

to change my approach. I've been planning to first get to a good

point on the LDN and then begin MMS for the babesia and lyme. It

appears people are making big progress on it. I did allimed for some

time and it made a huge difference. I slowed down on it (it's $130 an

ounce), and I flared again. I just can't see spending that much

forever.

Thanks for suggesting the blood type diet. I'll look into that.

>

> I also have Lyme, babesiosis, both kinds of ehrlichiosis, and

bartonella.

> I've been treated for all over the course of several years and

improved

> greatly. I also had 2 viral reactivations during the course of that

> treatment (EBV, CMV). Now, if I feel a viral reactivation (low-

grade

> fever, increased fatigue), I take pau d'arco until it passes. I

was also

> dx'd w/fibromyalgia, and have degenerative joint disease in my back

> and knee, and an autoimmune skin condition

> (Graham-Little-Piccardi-Lasseur Syndrome).

>

> I've been on LDN for about a month. The first 10 days, I took 1.5

mg

> and did that until the sleep disturbances (frequent awakenings)

passed -

> then started 3 mg and have been there for ~3 wks. We suspected

> Hashi's yrs ago since my thyroid (TSH) was high, requiring a

thyroid

> med for 2-3 yrs, then I went hyper on the smallest dose of it and

stopped.

> They were never able to capture thyroid antibodies in my blood, but

> ultrasound showed a " small thyroid. " My son has Hashi's. Oh, and

> I'm on 50 mg/day fluconazole - just in case of candida (diet's

pretty

> good, so I don't think so). Am overweight and losing lbs on the

blood

> type diet, which is no small feat given doc's restricted my

exercise to 1/2

> of what it had been prior to developing severe IT band pain.

>

> During the 1st week or so of LDN, I also had increased tinnitus -

now, it

> only occasionally acts up. The arthritis in my shoulders, hips and

elbows

> is pretty much gone, helping me sleep much better. For the past

week,

> I've got 1 knuckle joint that is very inflamed and sore - that

could be the

> Lyme and/or bartonella, I guess. So far, the LDN isn't doing

anything

> for my muscle pain (am in physical therapy for severe IT band pain -

they

> have worked out " knots " above my knee and near my pelvis).... I've

had

> days where I've felt more energy, but also had some days where I've

> been more tired than usual and actually have taken 2 naps those

days!

> (I'm hoping that is just a sign that the LDN is really working and

my

> body's exhausted from the shift in gear;)

>

> I'm waiting until I stop having the occasional sleep disturbance and

> tinnitus before going up to the 4.5 mg dose. Not sure if this

helps you -

> just wanted to share the above, but also to validate what it sounds

like

> you realize - that anything that supports proper immune function may

> not be able to work properly in the presence of active infection.

Oh, and

> I pulse artemesia annua for the babesiosis - despite several long,

intense

> treatments for it, I don't think we ever really get rid of it - the

art annua

> seems to be able to keep it at bay.

>

> Sue

>

> ********

> Posted by: " grball628 " Angie@... grball628

> I don't have ms, but I do have lyme disease, babesia, viruses,

> hashimotos thyroiditis, fibromyalgia, chronic fatigue, arthritis in

my

> neck, etc.

>

> I'm on such a tiny dose! Should I try to take more, or stay at this

> dose?

> Thu Jul 3, 2008 10:11 pm (PDT)

> Hi Ron,

>

> Thanks, for your input, but I'm aware of the need to kill the lyme.

> I'm sure you're aware that part of overcoming any illness including

> lyme is getting the immune system to function well. If you use

rife,

> than I'm sure you're aware that the lyme community considers

> supporting the immune system an essential part of the overall

> approach to wellness. That's what I'm trying to do with the LDN.

>

> I still would appreciate some advice and support that addresses the

> questions I posted.

>

> Thanks

>

[Guest guest]

I am not currently treating the Lyme - it was treated over the course of

4 yrs on various oral antibiotics, in between or during treating all of these

coinfections (eg, Ceftin, doxy, Valtrex, Plaquenil + Biaxin, Zithromax +

Mepron - even clindamycin + quinine, which gave me horrendous freight-

train tinnitus so had to stop - all at different times along the way) - ending

with IV Rocephin for 10 wks due to severe facet joint arthritis in my back

(facet joint was actually out of the socket and they were talking surgery -

it was then my LL doc suggested IV and I agreed). The joint seemed to

be getting better soon into my IV treatment, and w/in 4 wks it felt like it

was back in the socket. Shortly after stopping IV, tho (eg, w/in 7-10 days),

the facet joint pain began again so I was put back on IV for another 6 wks.

During that time, I began allergy shots (I tested + for 10 things, but both

allergy docs I saw said I didn't need shots). I had a friend w/Lyme

who did this w/fantastic results, so I asked if I couldn't at least try the

shots - both allergy docs said it couldn't hurt to try. W/in ~2 months of

starting the shots, I was able to stop antibiotics. It has been nearly 4 yrs

since I've been on them. Past 10 mos have been incredibly stressful and

I felt like I was having a flare-up. LL doc seems to agree - just trying other

things, including the LDN, before resorting back to the antibiotics. btw, I

have to get shots more often than the "average" person, at least every 2-3

wks vs. once/month. In the beginning, it was twice/week while the dose

was titrated up and every time I tried to go onto the same schedule as the

"average" person, I got sick again. Doc finally let me be the judge of how

often I needed the shots;)

Re: the joint pain - I believe, in my case, the hip/elbow/shoulder joint pain

may be from the autoimmune skin condition (GLPL). I cannot prove it and

there's no documentation out there suggesting arthritis is part of GLPL - but

I'd found it odd that my worst arthritis (in these large joints) was located in

my body exactly where I have the most skin bumps from the GLPL (which

are subsiding). I mention this only because it is my opinion that these joint

pains may not have been due to Lyme. I also have low IgA, which predisposes

people to: allergies, arthritis, asthma, and thrombocytopenia. If you have any

one/combination of those and haven't had your IgA checked, you may want to.

Also ASO - some folks w/persistent Lyme have found their ASO levels high

and according to Lida Mattman, this may contribute to the Lyme not resolving,

even w/antibiotics. My NK cells are also notoriously low and I use cordyceps

for that.

I did not feel an increase in pain level when beginning 1.5 mg LDN - in fact I

noticed that after just the 1st dose, this arthritis was better for me! Don't know

about the viral symptoms - I just think when you've had Lyme, your immune

system's screwed up and you may succumb to these viral reactivations. I haven't

had any viral symptoms for nearly 4 months. I tried artemisin in the past, but it

didn't seem to work for me whereas the whole herb, artemesia annua, does.

Hope I answered everything - if not, just let me know;)

Good luck,

Sue

************

Fri Jul 4, 2008 9:41 am

grball628" <Angie@...> grball628 Re: Weird problems with LDN

Sue,Thank you so much for sharing that. That really helps! Are youcurrently treating the lyme? I'm wondering how you did it.It does sound like you're getting some positive results from the LDN.That's so great that your joint pain has reduced. Did you feel anincrease in pain levels at first? I'd be thrilled if the joint paingoes away!I would think that the LDN would help the body conqueur some of theinfections such as the viruses. Could your viral symptoms be yourbody staging a fight?I've been thinking about p'au d'arco and I think I'll pick some up. Ihad a severe heart reaction to the artimisinin, so I'm going to haveto change my approach. I've been planning to first get to a goodpoint on the LDN and then begin MMS for the babesia and lyme. Itappears people are making big progress on it. I did allimed for sometime and it made a huge difference. I slowed down on it (it's $130 anounce), and I flared ag

ain. I just can't see spending that muchforever.Thanks for suggesting the blood type diet. I'll look into that.

[Guest guest]

Hi,I am a Lymie too an can relate to a lot of this. The pain can be horrid. Fibro; Fibro fog, Joint Pain, etc. Add head trauma and a vestibular benign tumor to the mix.Would love to know a cure.Been on every antibiotic except Vancomycin.My Doc is an LLMD, but Lyme is essentially autoimmune so we often self destruct when it becomes Neuro-Lyme.  I never had the rash and tested negative pre PVR test. If I could turn back the clock I would. I don't reveal my Doc's name because it's a Witch Hunt.Probably got Lyme while doing animal rehab volunteering. "No good deed goes unpunished", as they say.Hang in there!GailOn Jul 4, 2008, at 5:48 AM, lollyjolly58 wrote:>> Is this normal? I'm the person who had the extreme hyperthyroid > reaction after trying 1.5 mg. I thought I had a heart attack but my > stress test was okay. I stopped the lugol's iodine and cut my thyroid > in half at my doctor's suggestion. I think that worked so far. > > I've been on only about .50-60 mg. I've been opening a .75 capsule, > removing some and working my way up - with my doctor's approval. When I > go higher I get short of breath again, so I think I'll probably have to > cut out my thyroid all together.> > On the LDN I've been getting more and more forgetful and spacey. I mean > I feel stupid! I almost drove away from the pump with my gas cap off > today, and I'm just doing really unbelievably spacey things. I'm also > in much more pain in my joints and neck. I've actually been sleeping > better, but I'm getting more fatigued than usual by late afternoon. At > times I think it's helping my bladder though, as I think I'm feeling > the need to urinate less frequently. Is any of this normal? Will it > pass? > > I don't have ms, but I do have lyme disease, babesia, viruses, > hashimotos thyroiditis, fibromyalgia, chronic fatigue, arthritis in my > neck, etc. > > I'm on such a tiny dose! Should I try to take more, or stay at this > dose?> > Any input or advice would be appreciated.The only advice I can give you at this stage is to get thyroid labsdone include the Free T3 Free T4 and TSH it's very hard to give advicewith no labs in front of you, even though you say you went reallyhyper. When I first starting taking LDN it gave me palpitations nauseaand foggy brain but I hadn't gone hyper and it only lasted for about aweek or so.Suggestion book to see your doctor and get your labs done.Also the ringing in your ear tinnitus sounds more like a hypo symptomthan hyper or it could be totally unrelated so maybe you should getthat checked out also. Sorry can't be of much help at this stage.Best wishes Lolly

[Guest guest]

Thank you Gail - I appreciate your encouragement! Are you on the

LDN? I would love to hear how it's gone for you.

Have you considered any of the alternatives like salt/c, MMS, rife,

etc? I can tell you the allimed helped me a great deal, but I don't

think it eradicates it 100% if it's late stage and it's too expensive

to stay on forever. Plus I'm not sure that the bugs didn't grow

resistent.

I knew I got bit over 20 years ago when I lived in connecticut. I

found a tick in my arm one morning upon waking. I never had

antibiotics cause I had great difficulty handling them, and my doc

said since I tested negative and never had a rash, I should be fine.

Yeah right.

> > >

> > > Is this normal? I'm the person who had the extreme hyperthyroid

> > > reaction after trying 1.5 mg. I thought I had a heart attack

but my

> > > stress test was okay. I stopped the lugol's iodine and cut my

> > thyroid

> > > in half at my doctor's suggestion. I think that worked so far.

> > >

> > > I've been on only about .50-60 mg. I've been opening a .75

capsule,

> > > removing some and working my way up - with my doctor's

approval.

> > When I

> > > go higher I get short of breath again, so I think I'll

probably

> > have to

> > > cut out my thyroid all together.

> > >

> > > On the LDN I've been getting more and more forgetful and

spacey.

> > I mean

> > > I feel stupid! I almost drove away from the pump with my gas

cap off

> > > today, and I'm just doing really unbelievably spacey things.

I'm

> > also

> > > in much more pain in my joints and neck. I've actually been

sleeping

> > > better, but I'm getting more fatigued than usual by late

> > afternoon. At

> > > times I think it's helping my bladder though, as I think I'm

feeling

> > > the need to urinate less frequently. Is any of this normal?

Will it

> > > pass?

> > >

> > > I don't have ms, but I do have lyme disease, babesia, viruses,

> > > hashimotos thyroiditis, fibromyalgia, chronic fatigue,

arthritis

> > in my

> > > neck, etc.

> > >

> > > I'm on such a tiny dose! Should I try to take more, or stay at

this

> > > dose?

> > >

> > > Any input or advice would be appreciated.

> >

> > The only advice I can give you at this stage is to get thyroid

labs

> > done include the Free T3 Free T4 and TSH it's very hard to give

advice

> > with no labs in front of you, even though you say you went really

> > hyper. When I first starting taking LDN it gave me palpitations

nausea

> > and foggy brain but I hadn't gone hyper and it only lasted for

about a

> > week or so.

> >

> > Suggestion book to see your doctor and get your labs done.

> > Also the ringing in your ear tinnitus sounds more like a hypo

symptom

> > than hyper or it could be totally unrelated so maybe you should

get

> > that checked out also. Sorry can't be of much help at this stage.

> >

> > Best wishes

> >

> > Lolly

> >

> >

> >

>

[Guest guest]

>

> Hi Lolly - thanks for your answer. I'm certain it's the LDN because

> I took a night off from it, and I felt better the next day. I could

> think better for one thing. I know my doctor will just tell me to

> quit taking it, and I don't want to give up on it if this is just a

> temporary thing. Does what I described sound really unusual for

> people taking the LDN?

>

>

Angie,

I am hypothyroid due to RAI. My dx is Graves Disease. I started LDN on

March 1 (or 2nd..can't remember off hand) The one thing I noticed for

the first few days was an increase in heart rate (approx. 120 resting,

and up to 140 or more if I exerted myself at all.) Severe palpatations

too. And my blood pressure increased slightly. But this went away

after a couple of days. I just think my body had lacked proper

endorphin production for years, and it just didn't know how to react

to all those extra endorphins. I was at 1.5 mg. when I noticed these

symptoms. I just took it really easy those first few days and it got

better after that.

You should have your levels checked. Many times, hypo symptoms mimic

hyper. I just went in because I SWORE I had went hyper from the LDN,

when in fact, my TSH was up to 6.7 (.35-5.5) and my FT3 was on the

bottom of the normal range. I was def. hypo again...so all those

" hyper " symtpoms, were really hypo.

Get some labs, and post the results. We can give you a better idea

where you are at from there.

Check out our site for thyroid autoimmunity and LDN. www.ahsta.com

Saundra

[Guest guest]

Thanks ,

One of my docs said I shouldn't have my thyroid tests again until I

reach my goal dosage with the LDN. Does that make any sense?

I'm pretty sure I can get the blood test from the doctor who gave me

the LDN perscription though. He's usually willing to let me do what I

think I need as long as insurance will cover it.

I will say that my heart symptoms have been almost gone, though my

blood pressure has been a bit high. Yesterday it seemed more normal

so I was going to go a tiny bit higher with my LDN tonight. As I

mentioned, I've been taking some of the drug out of the .75 capsule.

Would that be a good or bad move based on how I'm feeling?

I am hoping that one of the posters is right, and this is just my

immune system kicking in more properly. I would appreciate any other

opinions.

> >

> > Hi Lolly - thanks for your answer. I'm certain it's the LDN

because

> > I took a night off from it, and I felt better the next day. I

could

> > think better for one thing. I know my doctor will just tell me

to

> > quit taking it, and I don't want to give up on it if this is just

a

> > temporary thing. Does what I described sound really unusual for

> > people taking the LDN?

> >

> >

> Angie,

> I am hypothyroid due to RAI. My dx is Graves Disease. I started LDN

on

> March 1 (or 2nd..can't remember off hand) The one thing I noticed

for

> the first few days was an increase in heart rate (approx. 120

resting,

> and up to 140 or more if I exerted myself at all.) Severe

palpatations

> too. And my blood pressure increased slightly. But this went away

> after a couple of days. I just think my body had lacked proper

> endorphin production for years, and it just didn't know how to react

> to all those extra endorphins. I was at 1.5 mg. when I noticed these

> symptoms. I just took it really easy those first few days and it got

> better after that.

> You should have your levels checked. Many times, hypo symptoms mimic

> hyper. I just went in because I SWORE I had went hyper from the LDN,

> when in fact, my TSH was up to 6.7 (.35-5.5) and my FT3 was on the

> bottom of the normal range. I was def. hypo again...so all those

> " hyper " symtpoms, were really hypo.

> Get some labs, and post the results. We can give you a better idea

> where you are at from there.

> Check out our site for thyroid autoimmunity and LDN. www.ahsta.com

> Saundra

>

[Guest guest]

>

> Thanks ,

>

> One of my docs said I shouldn't have my thyroid tests again until I

> reach my goal dosage with the LDN. Does that make any sense?

>

> I'm pretty sure I can get the blood test from the doctor who gave me

> the LDN perscription though.

Did they run a FT3 and an FT4? I know with graves disease, the

antibodies can suppress TSH production for years. So if a doctor is

treating according to TSH alone, he send his patients very hypo. This

may be the case for Hashi's too. IF you join ahsta, you can post this

question, and get a much more educated response. This is why the FT's

are important in looking at the whole picture. For instance, my last

tests showed a TSH of 6.7, like I said. My FT4 was smack dab in the

middle of normal range, but my FT3 was at the very bottom of normal.

FT3 is what we feel the most. It is an unstable molecule, therefore I

don't think it is definitive for dx, but it give a better insight to

the whole picture. My doctor refused to change my meds or do anything.

So I switched to Armour on my own. I feel I have a conversion

issue..ie...my body isn't converting the T4 to T3. Every lab up until

this one my levels coincided...FT4 in the middle, FT3 in the middle,

one low, the other low. Since starting Armour, all my symtoms are

gone. To me, this proves my point. My doctor won't listen though, so I

use her only for my labs. It is unfortunate, but what can I do? I have

no insurance, and must go to a reduced fee clinic.

Also, have your adrenals been tested? Sorry, but I can't remember.

I know for me, LDN has made the difference in me being able to

function. Without it, I was a huge mess.

IF you can get those numbers, with ranges, I can give you a much more

tailored response. Feel free to email me privately with those if you wish.

Good luck, and hang in there.

OH yeah, I wanted to point out that I think my TSH has risen due to

LDN...ie....as those antibodies that are associated with graves

disease begin to leave, my partially working thyroid is no longer

being attacked by them. IT would stand to reason then that the thyroid

wouldn't have to work in overdrive, or be hyperactive anymore, because

the antibodies are subsiding. It would then stand to reason that my

TSH would increase. This is just my uneducated opinion. But it makes

the most sense.

Saundra

[Guest guest]

Hi Angie.

You say you had normal labs but do you know what your FT3/4 was your

just looking at the TSH and saying you are extremely hyper.

Like Saundra said hypo and hyper symptoms can mimic each other I can't

tell which way I am unless I get TFT's done to see.

Your putting a lot of the onus on your symptoms to LDN when it could

also be unrelated, you may get some which will be short lived a few of

us got palpitations my HR was 140 I rode the storm and it passed and i

didn't go hyper my TSH went below normal ranges I still looked at the

FT3/4 which had actually gone down low TSH high FT3/4 means hyper and

vice versa for hypo.

So your suppressed TSH could mean that your antibodies are actually

going down. Which is a good sign.

Do you have your last FT3 and FT4 results that went with that TSH. I

would be interested in seeing what they were include the reference

ranges, each time you have labs done do ask for copies.

Lolly

>

> Hi Lolly - I just found your second post - thanks for writing! I did

> have normal labs except the TSH was .o1 and the minimum normal is .4.

> The doc thought it was the combination of the lugols iodine I'd been

> taking for a while, with the LDN. I did stop the lugols, and I do

> seem pretty much back to my normal self with the heart symptoms and

> shortness of breath-until I up my dose of LDN.

>

> I had the tinnitis for many, many years but it's been much better.

> It seems like it comes on shortly after I take my LDN. I'm pretty

> certain the LDN has something to do with the reappearance.

>

> I'm really concerned about the spaciness, but I'm glad to hear you

> experienced that yourself. I've been on LDN since June 8, and it's

> been increasing probably over the past couple weeks.

>

> I'm also concerned about the pain, but I see people talk about

> increased stiffness, so I'm hoping this will pass.

[Guest guest]

Hi Lolly & Saundra,

I just went to look for the blood work and I can't find my most

recent tests. My office is a junk pile at the moment and I haven't

had the strength to clean it up. I'm going for an IV on Wednesday (I

get glutathione), and that doc has a copy my blood work results. I'll

request a copy and let you know.

In the meantime, do you guys think it would be okay to keep a bit

more of LDN in the capsule tonight? Or do you think I need to wait

until the symptoms die down? I won't actually take the full .75 mg

yet, but I'd like to inch up a little to it. What do you think?

> >

> > Hi Lolly - I just found your second post - thanks for writing! I

did

> > have normal labs except the TSH was .o1 and the minimum normal

is .4.

> > The doc thought it was the combination of the lugols iodine I'd

been

> > taking for a while, with the LDN. I did stop the lugols, and I do

> > seem pretty much back to my normal self with the heart symptoms

and

> > shortness of breath-until I up my dose of LDN.

> >

> > I had the tinnitis for many, many years but it's been much

better.

> > It seems like it comes on shortly after I take my LDN. I'm pretty

> > certain the LDN has something to do with the reappearance.

> >

> > I'm really concerned about the spaciness, but I'm glad to hear

you

> > experienced that yourself. I've been on LDN since June 8, and

it's

> > been increasing probably over the past couple weeks.

> >

> > I'm also concerned about the pain, but I see people talk about

> > increased stiffness, so I'm hoping this will pass.

>

[Guest guest]

Hi Angie,

Well it would be a great help if you could find those labs you really

should keep them safe in thyroid autoimmune disease thyroid labs and

results are very important in determining are status what dose of

medication to take or if we needs to adjusted.

I don't know why you are splitting a capsules I'm sure it doesn't work

well that way you can't judge how much of the LDN you will getting.

You may have been better off getting LDN in liquid form.

I would take the whole capsule it's such a low dose I doubt it is even

doing anything, under 1-1.5mg probably isn't.

What dose did you start on and how long have you been taking LDN.

I'm not increasing mine to 4.5mg as 3mg is doing the job for me.

Lolly

>

> Hi Lolly & Saundra,

>

> I just went to look for the blood work and I can't find my most

> recent tests. My office is a junk pile at the moment and I haven't

> had the strength to clean it up. I'm going for an IV on Wednesday (I

> get glutathione), and that doc has a copy my blood work results. I'll

> request a copy and let you know.

>

> In the meantime, do you guys think it would be okay to keep a bit

> more of LDN in the capsule tonight? Or do you think I need to wait

> until the symptoms die down? I won't actually take the full .75 mg

> yet, but I'd like to inch up a little to it. What do you think?