lyme?

[Guest guest]

Phil,

All of those symptoms -- from twitching, light sensitivity, etc -- all fit

the Lyme mold! It is very important that you find your way to a doctor who

really knows how to treat Lyme and possible other tick-borne diseases. You

have found your way to a great group here...I'm so glad for your sake you

did. Ask any question you need answered and someone with knowledge in that

area will respond to you!

~Judie

[Guest guest]

> Phil,

Have you found Dr. Burrascano's information on Lyme disease? Reading

through his article helped me a lot, it has a list of symptoms you will

find informative. You can find his 2002 guidelines at www.ilads.org .

I have also found that some doctors don't like it when you show up more

informed than they are, and I had a lot of trouble getting a diagnosis,

even with every symptom on Dr. Burrascano's list. Beware of

misinformation, it is hazardous to your health. Good luck, and if it

really is Lyme disease, there's hope for full recovery.

Leana

>

> I am a 36 year old male from Wisconsin. I have constant twitching in

>

> most muscles, weakness in both hands and right wrist, leg and right

> back pain (when I write), fatigue, blurring eyes, sensitivity to

> sunlight, and other things. I have had the twitching and hand

> weakness for about a year. I also had some sort of bite on my foot

> late last year (Oct. 2001). I am in the process of being tested for

> Lyme. Has anyone had these same or similar symptoms? Please let me

> know.

>

> Phil

>

>

>

>

>

[Guest guest]

Phil,

I'm a 36 year old male from Ohio! Glad to have someone else from my demographic

in the forum (although I'm certainly not glad that you are ill). Most of your

symptoms sound like classic Lyme symptoms. The timing of the insect bite is

probably most significant - - is that when the symptoms started? I was perfectly

healthy until my bite, and then the cascade of strange symptoms.

I hope you take the possibility of Lyme seriously (and it sounds like you are).

Chances are your tests will come back negative even if you are infected. The

serology is highly unreliable, and most authoritative sources (including the

CDC) indicate the diagnosis should be clinical (based on symptoms). You will

find that many people in this forum were told many times that they didn't have

Lyme because their tests were negative, and because their doctors didn't know

squat about Lyme. Same thing happened to me until I finally found the right doc.

I strongly recommend that you locate an LLMD (Lyme-literate doctor). Some folks

on this list may be able to point you to one in your area (I have to drive 5

hours!). Also, you may want to check out www.Lymenet.org which has a feature

devoted to locating LLMDs (and an extremely helpful message board devoted to the

topic as well). If you do have Lyme, you MUST get treated with antibiotics,

strong enough and long enough, or there is little hope of getting better! But

the good news is that this disease IS treatable, especially when caught early

enough. It's a long, arduous road to recovery (which I am still on), but there

are many many success stories!

Good luck and welcome to the group!

Jeff in Ohio

Jeff

Assistant Professor of Management

Miami University

307 Laws Hall

Oxford, OH 45056

(513) 529-4746

>>> philp@... 12/26/02 19:25 PM >>>

[Guest guest]

phil, i have had most of what you speak of and more. Being treated for

lyme/coinfections

sbm@...

[ ] Lyme?

I am a 36 year old male from Wisconsin. I have constant twitching in

most muscles, weakness in both hands and right wrist, leg and right

back pain (when I write), fatigue, blurring eyes, sensitivity to

sunlight, and other things. I have had the twitching and hand

weakness for about a year. I also had some sort of bite on my foot

late last year (Oct. 2001). I am in the process of being tested for

Lyme. Has anyone had these same or similar symptoms? Please let me

know.

Phil

[Guest guest]

You are my twin...hello welcome...I have Lyme....PCR proves it....I have

everyone of those symptoms and more.

Cyntha Landon in Lititz, PA

[ ] Lyme?

> I am a 36 year old male from Wisconsin. I have constant twitching in

> most muscles, weakness in both hands and right wrist, leg and right

> back pain (when I write), fatigue, blurring eyes, sensitivity to

> sunlight, and other things. I have had the twitching and hand

> weakness for about a year. I also had some sort of bite on my foot

> late last year (Oct. 2001). I am in the process of being tested for

> Lyme. Has anyone had these same or similar symptoms? Please let me

> know.

>

> Phil

>

>

>

>

>

[Guest guest]

Thanks for the replies. Cyntha and Jeff, what have you been taking

for the symptoms? I have an appoitment with my Lyme doc on Jan 13

and I would like to be prepared. I had the PCR test done as well

along with Western Blot and Lyme Dot. No results yet. The doc said

initially I will go on oral Abx.

Cyntha, you say I am your twin - how bad did you get before things

started getting better (if they have gotten better)? I still have

use of all function except my right wrist lifting things and my

thumbs when I clip my nails or start the car. Also is there anything

for the twitching and/or leg/back pain? That drives me crazy

sometimes.

I hope they find that it is Lyme because the neurologists seem to

think it is something worse. I don't believe them and never will.

Phil

> You are my twin...hello welcome...I have Lyme....PCR proves it....I

have

> everyone of those symptoms and more.

>

> Cyntha Landon in Lititz, PA

>

> [ ] Lyme?

>

>

> > I am a 36 year old male from Wisconsin. I have constant twitching

in

> > most muscles, weakness in both hands and right wrist, leg and

right

> > back pain (when I write), fatigue, blurring eyes, sensitivity to

> > sunlight, and other things. I have had the twitching and hand

> > weakness for about a year. I also had some sort of bite on my foot

> > late last year (Oct. 2001). I am in the process of being tested

for

> > Lyme. Has anyone had these same or similar symptoms? Please let me

> > know.

> >

> > Phil

> >

> >

> >

> >

> >

[Guest guest]

My lyme I believed lay dorment for about six years and then poped it's head

out. I mean I had a few symptoms here and there but I was a teenager and

believed that it was normal so called growing pains. Mine was brought out

full force when I became pregant with my children each pregnancy being

worse. I am on lots of medication that helps me to control

symptoms.....some of them are

Trazadone-Helped aid in sleeping

Trezapam-another aid for sleeping

Celexa-anti-depressant

Cyclobenzaprine-Muscle relaxer

Ibprofun-pain and swelling

Prilosec-Gastric Esophogeal Reflux Disease

Lisnopril-blood pressure medication

I use artificial tear drops for my Chronic Dry Eye

Colestid-for high cholesterol

Zyrtec-allergies and sinus

Probably more and not thinking about it. I have a tolerance to pain thank

goodness...I have been through eight weeks of IV antibiotics...but have to

say I feel worse than when I began but this is due to the fact I was not

given a long enough coarse...I am now retesting and hope to get another

positive pcr soon. Many of us have been through the rounds please let me

know if you ever need any help. My three daughters have congenital Lyme

disease. So I am sure learning a lot.

[ ] Re: Lyme?

> Thanks for the replies. Cyntha and Jeff, what have you been taking

> for the symptoms? I have an appoitment with my Lyme doc on Jan 13

> and I would like to be prepared. I had the PCR test done as well

> along with Western Blot and Lyme Dot. No results yet. The doc said

> initially I will go on oral Abx.

>

> Cyntha, you say I am your twin - how bad did you get before things

> started getting better (if they have gotten better)? I still have

> use of all function except my right wrist lifting things and my

> thumbs when I clip my nails or start the car. Also is there anything

> for the twitching and/or leg/back pain? That drives me crazy

> sometimes.

>

> I hope they find that it is Lyme because the neurologists seem to

> think it is something worse. I don't believe them and never will.

>

> Phil

[Guest guest]

Phil,

The sensitivity to light and fatigue were big symptoms for me.

Muscle weakness was also very evident. I didn't have much twitching

but believe that it is a symptom. The lyme can get into your brain

and cause all kinds of " neurological " stuff. Good luck with finding

out whats wrong with you and remember that a negative test result is

not the end of the line. The best route to take is find an LLMD who

can look at your whole case. Lyme is a clinical diagnosis backed up

by test results.

Tamara

>I am a 36 year old male from Wisconsin. I have constant twitching in

>most muscles, weakness in both hands and right wrist, leg and right

>back pain (when I write), fatigue, blurring eyes, sensitivity to

>sunlight, and other things. I have had the twitching and hand

>weakness for about a year. I also had some sort of bite on my foot

>late last year (Oct. 2001). I am in the process of being tested for

>Lyme. Has anyone had these same or similar symptoms? Please let me

>know.

[Guest guest]

Hi

I have had RA since 1998 and have been on minocin since the beginning.

I have done extremely well and have even tested negative once, while I

went back to positive I'm in really good shape. Yesterday I noticed a

bulls eye rash on my arm, I live in deer country. It does look like the

pictures I found on the net. I had thought my RA was acting up, either

because of the weather changing or maybe because I added cleocin again

trying to get the test negative again. Now I'm wondering if it isn't

lyme disease. I know there was info on this on the list years ago, but

I couldn't find anything. So my question is could that cause my

symptoms to reappear?

Thank you

[Guest guest]

rheumatic lyme?

> Hi

> I have had RA since 1998 and have been on minocin since the beginning.

> I have done extremely well and have even tested negative once, while I

> went back to positive I'm in really good shape. Yesterday I noticed a

> bulls eye rash on my arm, I live in deer country. It does look like the

> pictures I found on the net. I had thought my RA was acting up, either

> because of the weather changing or maybe because I added cleocin again

> trying to get the test negative again. Now I'm wondering if it isn't

> lyme disease. I know there was info on this on the list years ago, but

> I couldn't find anything. So my question is could that cause my

> symptoms to reappear?

> Thank you

>

The answer is a definite yes. Lyme disease mimics over 300 other diseases.

You may need more than Minocin.

An excellent book on treating Lyme available from amazon.com:

5. When Antibiotics Fail: Lyme Disease and Rife Machines, with Critical

Evaluation of Leading Alternative Therapies

by Rosner (Paperback - January 2005)

Avg. Customer Rating:

(Rate this item)

Usually ships in 24 hours

List Price: $46.00

Buy new: $46.00

>

>

>

[Guest guest]

Lyme isn't anything to mess around with. If you have Lyme see a LLMD Not a "normal" doctor. My daughter has Lyme Disease. She is on oral medication however I don't think it is helping. She is on LDN but mostly for her CD ( Gluten issues )

April

www.glutenfreefoodsrock.com

[low dose naltrexone] Lyme?

Hi Brad,Lyme? I bought some Samento R (TOA free-very important!), and took this. Itook some just in case and so far, have no symptoms. It is world wide andepidemic.They want you to believe a certain tick is the transmission but reading willtell you it can be transmitted any way you can imagine. Mosquitoes,sexually, casual, flies etc.It seems to be a mycoplasma, man made and released on purpose.Jean

[Guest guest]

A real LYME Literate Medical Doctor (LLMD) is critical, I would have to agree with that! Found mine through turnthecorner.org; emailed them.

One supposed specialist I saw early on ran my first Western Blot (not IGENEX) and not enough bands were positive (I think just 1 band), said it wasn't LYME, have a nice day. That was it.

Good thing I knew better from this LDN blog, and others, and kept pushing, and found a LLMD on my own. IGENEX Western Blot I was positive on 2 bands on both parts, which met even the messed up rules for LYME; I was a LYMIE!

Brad

From: glutenfreefoodsrock [mailto:glutenfreefoodsrock@...] Sent: Thursday, December 16, 2010 6:49 AM, Bradley J.; low dose naltrexone ; oldglory@...Subject: Re: [low dose naltrexone] Lyme?Importance: High

Lyme isn't anything to mess around with. If you have Lyme see a LLMD Not a "normal" doctor. My daughter has Lyme Disease. She is on oral medication however I don't think it is helping. She is on LDN but mostly for her CD ( Gluten issues )

April

www.glutenfreefoodsrock.com

[low dose naltrexone] Lyme?

Hi Brad,Lyme? I bought some Samento R (TOA free-very important!), and took this. Itook some just in case and so far, have no symptoms. It is world wide andepidemic.They want you to believe a certain tick is the transmission but reading willtell you it can be transmitted any way you can imagine. Mosquitoes,sexually, casual, flies etc.It seems to be a mycoplasma, man made and released on purpose.Jean

[Guest guest]

My daughter had/has/ 9 positive bands. C.6 of 8.12 First NON LLMD gave us two weeks of medication and said she was fine.

She still isn't fine on almost three months of treatment with LLMD

[low dose naltrexone] Lyme?

Hi Brad,Lyme? I bought some Samento R (TOA free-very important!), and took this. Itook some just in case and so far, have no symptoms. It is world wide andepidemic.They want you to believe a certain tick is the transmission but reading willtell you it can be transmitted any way you can imagine. Mosquitoes,sexually, casual, flies etc.It seems to be a mycoplasma, man made and released on purpose.Jean

[Guest guest]

I wasn't really noticeably (to me) better until after my 5th month of ABX (after 2 months in a row of flagyl, month 4 and 5). Did total of 10 months of ABX, different ABX every month. Us LYMIES are all different though, different stages, different co-infections. Like the obscure post I can no longer find, it was a "bumpy ride" for me at the beginning of ABX.

Turns out, my brother in law was having issues, he lives two hours away from me, he got tested on his own, and was positive on a crummy WB test. He is seeing the same out-of state LLMD, and doing the ABX in a little different order than I, but he has different issues then I had. He isn't doing LDN. He is also getting better.

I think I got a little worse here and there during the first 5 months, on the ABX, assuming I was HERXing, starting to kill off what was trying to take over my body. I had times where I would slur uncontrollably when I tried to speak, but only some times, some days worse than others. This didn't start until 3rd month of ABX! I had to hold onto the wall to walk for a while, more so after 4th week of LDN, before the ABX, but still had to be cautious while walking when ABX started.

Different LLMD's have different approaches.

I have seen some comments on the lymstrategies@... post, that say some LLMD's are bad. That you don't have to treat LYME with ABX. MAYBE, but I wouldn't trade my LLMD for the world, and ABX worked for me. No more slurring, no more right arm and right leg going numb, no more balance issues. It started for me in summer 2007, double vision, and 2 years of MS diagnosis, 7 brain MRI's, every 3-6 months, showing plaques/spots moving around my brain. LDN helped for brain fog and energy within days for me.

When I tried to stop LDN, thinking I might be doing some harm with it and ABX, I felt/got worse in just 2 days; after 2 days back on LDN, I felt/got better. I have always done 3 mg/night, from day 1. I weighed 250 lbs then, I am now at 238 lbs and dropping. Only recently, last few months, have I started to skip LDN one night a week.

Based on your WB results, and fact you are on ABX, and based on what I went through, thinking you are going the right direction. Again, I think LDN, which I first found because I thought I had MS, has really helped me throughout. BUT, I am not a Doctor, and still waiting to see what happens to me next.

If you want to talk more off group, just let me know. I can tell you all the different ABX I tried over my 10 months........

I never really tried the glutton free, but probably should...

Brad

From: glutenfreefoodsrock [mailto:glutenfreefoodsrock@...] Sent: Thursday, December 16, 2010 11:04 AM, Bradley J.; low dose naltrexone Subject: Re: [low dose naltrexone] Lyme?Importance: High

My daughter had/has/ 9 positive bands. C.6 of 8.12 First NON LLMD gave us two weeks of medication and said she was fine. [[bJS]] IDSA diagnosis, my "CDC" Doc would fall into this classification. IDSA says 14-30 days is all you will ever need for LYME; MAYBE if you catch it early? No such thing as CHRONIC LYME. Would beg to differ, and would be more than willing to give the IDSA rule making/following Doc's a blood transfusion, and let them go until problems started, so they could see for themselves. Yes I am still angry, but hopefully some of you won't have to go what I did.

She still isn't fine on almost three months of treatment with LLMD[[bJS]] It takes time, some people a year or two of ABX, so I have heard/seen....

[low dose naltrexone] Lyme?

Hi Brad,Lyme? I bought some Samento R (TOA free-very important!), and took this. Itook some just in case and so far, have no symptoms. It is world wide andepidemic.They want you to believe a certain tick is the transmission but reading willtell you it can be transmitted any way you can imagine. Mosquitoes,sexually, casual, flies etc.It seems to be a mycoplasma, man made and released on purpose.Jean

[Guest guest]

Since this seems to be a good discussion on Lyme (and LDN)....I figured I'd

chime in and share an update.

As some of you know...I was first dx'd with RRMS in Feb of '08...rx'd Copaxone

and sent on my way...discovered LDN....and then began researching Lyme. Tested

IGENEX IgM positive for Borellia in Sept of '09....found local LLMD...12 months

of ABX (Doxy and amoxy for 5 months, minocycline for the next 7 with Nystatin to

help control yeast) and LDN @ 3.0/mg each night.

There is no doubt I am worse. Much more difficult to walk (and more often

during the day)than it was a year ago. MRI's from last month show I have a

couple more minor lesions in my brain but none of them are enhancing. Which is

good.

Also had a complete set of CDC Lyme panels (IgM and IgG) and another IGENEX

panel done last month (Nov 2010). All of the panels came back negative.

I'm currently seeing both my local LLMD and a new neurologist at UT Southwestern

in Dallas, TX. The neuro isn't flat out dismissing Lyme, but he certainly is

pushing the diagnosis toward PPMS. My LLMD of course is continuing to defend

that its Lyme that is CAUSING my MS. My neuro is unconvinced. With the

research I've been doing though....I'm more inclined to side with my LLMD's

interpretation of things.

No enhancing lesions....but I feel so much worse. Its frustrating. I don't

know what to do.

My neuro has prescribed 4-AP (Ampyra) which I should receive beginning next

week. Research I have done says that it helps people with both Lyme and " MS "

with their fatigue and walking issues. The neuro also is not opposed to me

being on minocycline as he is aware of a study that was done that showed that

minocycline can help slow the progression for MS patients.

I'm debating on going back on Copaxone and take minocycline as well, but I sure

don't like the idea of having to stick myself again everyday. I'm also not

confident that Copaxone actually helps. And the cost...

Lyrica (30-day) = $80

Ampyra (30-day) = $40

MetaNX (30-day) = $70

LDN (30-day) = $26

etc...

etc...

It starts adding up.

Any ideas on what else I can do?

>

> I wasn't really noticeably (to me) better until after my 5th month of

> ABX (after 2 months in a row of flagyl, month 4 and 5). Did total of 10

> months of ABX, different ABX every month. Us LYMIES are all

different.........

[Guest guest]

>

> I never really tried the glutton free, but probably should...

>

> Brad

>

This typo had me in stitches despite the serious subject matter.

Everyone should be " glutton free " , and many gluten free as well.

K.C.

[Guest guest]

Similar story here;

Maybe get a new LLMD ? Just because they use the title, does not mean they have

the talent.

I just hired my LLMD #3. Had restarted my LDN w/ LLMD #2.

My LLMD #1 had been refered to me w/ great reviews. Eearly on, everything made

sense. Diagnosis via history, hands on exam, Fry Laboratories test.

Confirmation via my herxheimer reaction to doxycycline. We kept going. I went

from using one cane to usig two canes. LLMD #1 just kept prescribing the same 5

scripts or so. I had REALLY hoped that somehow we were rebuilding my inner

heath. I just kept losing weight. The end was strange. Not sure who gave whom

" the push " .

brief history - 2000 optic neuritis, 2004 MS - Rebif - Copaxone, 2005 disability

retirement, 2006 MS, LDN, EAP. 2008 Lyme.

Giving the first LLMD " the push " was the difficult one. My goal is my health.

Maybe catch me off-board and we can trade some detailed notes.

> >

> > I wasn't really noticeably (to me) better until after my 5th month of

> > ABX (after 2 months in a row of flagyl, month 4 and 5). Did total of 10

> > months of ABX, different ABX every month. Us LYMIES are all

different.........

>

[Guest guest]

Meant to include a couple extra points:

1) my hat is off to this board :-)) I refer many others to this board. early

on in my sickness, I knew something was terribly wrong. Even just thinking LDN

helped me escape the MS-cult w/ CRAB drugs.

I feel that my many lesions indicated by my MRIs, are due to a bacteriological

infection rather than a confused immune system. If we use the confused immune

system model, then we can use the $1600/month CRAB drugs.

So I say I have switched disease models and say that my many lesions are caused

by a bacteriological infection + several co-infections (my co-infections are

Herpes 6, mononucleosis, rocky mountain spotted fever, etc.) So I have to hire

a LLMD that can read the landscape (me) and prescribe the best drugs / cycle of

drugs to beat back all of the infections.

[Guest guest]

The cost of treatment is Crazy IMO Lyme treatment you need a large bank account or great insurance. We are paying everything out of pocket. The last 9 weeks I have spent $5600.00

[low dose naltrexone] Re: Lyme?

Since this seems to be a good discussion on Lyme (and LDN)....I figured I'd chime in and share an update.I'm debating on going back on Copaxone and take minocycline as well, but I sure don't like the idea of having to stick myself again everyday. I'm also not confident that Copaxone actually helps. And the cost...Lyrica (30-day) = $80Ampyra (30-day) = $40MetaNX (30-day) = $70LDN (30-day) = $26etc...etc...It starts adding up.Any ideas on what else I can do?>> I wasn't really noticeably (to me) better until after my 5th month of> ABX (after 2 months in a row of flagyl, month 4 and 5). Did total of 10> months of ABX, different ABX every month. Us LYMIES are all different.........

[Guest guest]

Hi,

I noticed on your list that you take Lyrica. I went off of that after several years on it. I lost 35 pounds without trying. It felt great too. I couldn't tell if it was doing anything, let alone anything good. I now know it was doing more harm than good. So I won't ever go on it again. I already struggle with my weight. I don't need to add to the problem.

I would support you in stopping it for a while, if nothing else due to the expense. That would save you a ton of money. $960 a year! Were it not for Worker's Comp paying for it, I would not have been on it at all. They were trying to help though. It just didn't work for me.

LDN has been the best thing I have ever done! People think I am strange, but I don't care. I feel better and am healthier, and hoping to get more healthy. I couldn't do that with the Lyrica.

And I have more energy. I actually could sit down this year, for the first time in 20+ years to do some Xmas cards. I got to hating this time of year because I just couldn't get in the spirit because of being so tired. I am more into enjoying friends and family now because of that, which isn't a bad thing for me, but getting to send out the cards, well, it felt like a great accomplishment for me.

I am looking forward to better on-going results too!

Glowing, grace~