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Lyme Disease ForumsDoctor (LLMD) Requests28-yr-old looking for Lyme Literate Doctor CT/NY
03/12/2012 12:30 PM
loislayne83
 
Posts: 31
New Member

28-year-old female looking for Lyme Literate Doctor in Southwestern CT, NY or anywhere within driving distance in that region.

I was diagnosed with Lyme Feb. 9, 2012 after several months of illness.

In a Dec. Western Blot, bands 41 KD IGG and 23 KD IGM were reactive.

Babesia Microti IGG and IGM were in the normal range. E. Chaffeensis AB IGG also in normal range.

I was retested (Western Blot) Feb. 7. The Feb. 9 result showed:

Lyme Disease AB (IGM) WB Positive

23 KD IGM Reactive

41 KD IGM Reactive

From there I did 21 days of doxycycline.

Severe headaches and neck pain, fatigue, insomnia, anxiety, weight gain, sensitivity to light and sound, erratic feeling of hot/cold without fever, forgetfulness, clumsiness, itching, pain in wrists/shoulders, elbows, leg cramps, etc. have remained consistent. The headaches and neck pain are the biggest problems.

My doctor has no advice post-antibiotics, suggested psychotherapy.

My short-term disability claim was rejected.

I am trying to find a Lyme Literate doctor, or any doctor to deal with these symptoms and the possibility of them relating to Lyme...

Preferably one who takes insurance. I have Blue Cross Blue Shield PPO (pay now.)

My symptoms are below:

Fatigue, tiredness, poor stamina -months now

Upset stomach

Change in bowel function- constipation, pain

Weight gain -- drastic in past three months

Chest pain or rib soreness - occasional, relieved some in past few weeks

Heart palpitations, pulse skips- occasional

Joint pain or swelling - elbows, wrists

Stiffness of the joints, neck, or back - intense for several weeks

Muscle pain or cramps - bad in legs and arms

Headache - debilitating and constant

Neck creeks and cracks, neck stiffness, neck pain - almost constant for several weeks

Tingling, numbness, burning or stabbing sensations, shooting pains - bad in legs

Eyes/Vision: light sensitivity

Ears/Hearing: ringing, sound sensitivity

lncreased motion sickness, vertigo, poor balance - clumsy past several weeks

Lightheadedness, wooziness - occasional for past few months

Confusion, difficulty in thinking - past few weeks

Forgetfulness, poor short term memory - past few weeks

Disturbed sleep- difficulty falling asleep, frequent awakening, hard to get out of bed in morning

Night sweats and chills, but no fever - constantly the past few weeks

Anxiety/erratic thoughts - several weeks

Thank you. I wish the best to everyone here.

--- The discussion has been locked ---


03/12/2012 03:42 PM  Top
Bettyg
 
Posts: 26641
VIP Member
I'm an Advocate

welcome lois Wink

thank YOU for the very detailed health history. may i suggest you COPY/PASTE it to YOUR PROFILE, top left corner of editing it. that would STAY in your profile forever whereas this post will get BURIED.

many times i/other leaders go to members profiles when we are attempting to answer questions; other members use it too that way; fyi only ;|)

i checked both CONN/NY; NONE of our llmds accept bcbs; sorry! it's very few nationwide who DO ACCEPT any insurance.

check yur private messages shortly for CONN. llmds.

locking this post; i sent ONE state only when there are many to chose from.

15-18 states have NO LLMDS whatsoever; fyi only.

bettyg, llmd coordinator/leader

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.
--- The discussion has been locked ---


03/13/2012 09:14 PM  Top
Bettyg
 
Posts: 26641
VIP Member
I'm an Advocate

deleted duplicate; posting 1 reply from deleted one below;

WiscLamLymie

Posts: 496

Group Leader

Bettyg has the list of docs. If she hasn't been around yet to PM you, she will. Hang tight. We are here for you!

Lauren

(My welcome letter is below. Read through it when you have a moment.)

Welcome! We are so glad you are on the right path! And that you found us here as well.

We will always be a support for you, even if no one else knows what you're going through... we do. And we will lend a hand or a hug anytime we can.

Ask your questions!

LLMD

If you don’t have a Lyme Literate Medical Doctor or Natural Doctor (LLMD/LLND) please go to the Doctor Request forum on this site (look at the top tabs) and request a LLMD in your area. Betty will PM you with info.

Bb=Lyme Bacteria

I also want to express my opinion and the opinion of nearly every Lyme doctor out there. The reason you need multiple antibiotics (abx for short) is because the Lyme bacteria is unique and stealth in its makeup.

It is a corkscrew shape, which is called a spirochete. It also can take other forms, the most prominent being the cyst form.

The Bb (short for Borrelia burgdorfei/the Lyme bacteria) gets hit with abx and it quickly goes into cyst form, thus not allowing the abx to eradicate them. This is one reason for other forms of abx, known as cyst-busters.

This has all been researched and documented. You can find YouTube videos to watch a spirochete go into cyst form within a few seconds.

They also form biofilms, which is like a fortified, protected city of loads of Bb and even other bugs, where traditional abx can't hit them.

Here is one: http://www.youtube.com/watch?v=lVmCa70bAxE

What happens most of the time when people are dx'd (diagnosed) with Lyme by doctors other than LLMDs is that they kill a few Bb, and the rest are driven into cyst form.

The patient feels better after a short cycle of abx, and they feel they are cured. Only to discover that when they come off the abx, they begin to relapse.

Under Our Skin

Please, if you haven't yet, watch the documentary, Under Our Skin. You can find it on Netflix instant streaming or hulu.com for free.

It explains a lot of the reasoning for the plight of the Lyme patient. Very eye-opening.

DIET

Another thing to think about is your diet. I understand that some people eat whatever they want and feel it is ok, but there are serious reasons why a NO SUGAR diet is important.

1. When you are on abx for any period of time, you are wiping out all the good bacteria in your gut. This can lead to a problem that many Lymies have: Candida problems (yeast!) It can overtake your gut and then it causes more problems.

2. Bb thrive on sugar. And whether you feel good or bad after eating it, this is their main source and most easily-attainable energy source. Not feeding them is important.

Also, many people with Lyme are not able to tolerate gluten and/or dairy. This is different for many, but you may want to consider cutting these things out for a minimum of two weeks to see how you feel without them.

Then, try introducing these types of things, ONE AT A TIME, to see if you react or feel poorly after eating them.

You can do this!

Please understand that you are brand new to this illness, and there are many people who are willing to help and offer advice and such. We all have the same goal: wellness.

Try not to be overwhelmed. We have all been there.

Pro-biotics

Make sure you are taking a really strong pro-biotic (pro-bx), two to three hours after each abx dose as this will help to keep your intestinal system (gut) in balance and keep the yeasties under better control.

And we're talking in the 20-40 billion a day range (some take even more!), different strains are a good thing, too. I always load up when I find the good ones on sale. Best idea as they are expensive.

Florajen is a popular one. You can find it at Walgreens at the pharmacy. No prescription needed, but it’s kept there in the fridge.

DETOXING

There is also the issue of detoxing regularly. Bb give off neurotoxins throughout their lives. When they are killed, they release everything in them, called endotoxins.

It's like a tiny atomic bomb going off every time one of them dies. These neurotoxins are one of the reasons we feel so sick. Nausea, headache, and flu-like symptoms are just a few ways we feel these endotoxins.

So when you kill them, you are bound to feel worse. This is called a Herxheimer reaction (or herx for short).

It was named from the guy who discovered it, which is why it's kind of a weird name. 

Detoxing is of utmost importance.

1.Epsom Salt baths are by far the most widely-used detox regimen. 2 C ES in the bath water. Soak for 20-30 minutes. It brings the toxins out of your body through your pores.

I also put 2 T freshly grated ginger in a tea ball and put that in the bath too, as ginger helps open the pores and increase blood flow. So more toxins can get the heck out. 

2. Drink water (lots!!!) with freshly squeezed lemon . Lemon also is a terrific detoxifier.

3. Take Milk thistle and Dandelion (comes in a capsule form, many times together in the same pill) every single day. This detoxes the liver, which is on overtime, with the meds and Bb and trying to keep the body's toxicity level in check.

A stressed liver is not good. So taking this every day is EXTREMELY important.

4. Taking Chlorophyll or Chlorella (the kind with broken cell walls) is also very important. It binds to the toxins that can be moving around in there, and ushers them out of your body.

If there isn't a good binder like this, once the toxins are in the intestines, they can be re-absorbed which won't help anything at all. I order mine from Swanson’s.

5. Burbur is an all-over body de-toxifier. I got mine from NutraMedix/Natural Healthy Concepts online.

Co-Infx

One last thing I want to tell you about here (I know this is a LOT of info, but these things I can't stress enough if you desire to be well). This would be co-infections (co-infx).

There are dozens of other bacteria/parasites/viruses that Lyme vectors (such as ticks) can carry, and many times, do carry. This is another reason why finding a LLMD is so important. They know about these things.

And sometimes when Lyme is being treated by itself, a patient doesn't get better because they have co-infx that are keeping them from healing.

Some of these are worse then the Lyme itself. I personally am fighting one called Babesia, which is a blood-born parasite.

The combo between Babs and Bb has given my a heart condition. Babs is also notorious for migraines, frontal headaches, heart palpitations, low-grade fevers, and many other things.

I also have Bartonella. This one can present itself with skin rashes/lesions that look red or white, and can look like a stretch mark or other form.

Painful bottoms of the feet, especially in the morning, low back pain, hip pain, severe thigh pain, low fevers, back of the head headaches, painful, stiff, sore, cracking neck...

There is also Ehrlichia, Anaplasma, Chlamydia Pneumonia, Mycoplasma, Rocky Mountain Spotted Fever, Relapsing Fever, and so many more!

Check out this link from a great website to read more on co-infx. http://www.lymedisease.org/lyme101/coinfections/ other_tick_diseases.html

I don’t wish to sound "doomsday" about this, and it's not my goal to freak anyone out, but I also want to convey the severity of Lyme and it's co-infx (Lyme + Co.).

If left un- or under-treated, Lyme has been proven to lead to other debilitating things in some people, such as MS, ALS, CFS, Fibromyalgia, Alzheimer's, Lupus, and more.

This is definitely a huge reason you want a good LLMD on your side for. You can also visit www.ilads.org to learn so much more about the truth regarding Lyme Disease.

Also, please click here http://www.ilads.org/files/burrascano_0905.pdf to find an amazing paper--in its 15th edition--by Dr. Joe Burrascano, who is a true Lyme hero. (If you watch Under Our Skin, you will see him in there!) 

This paper, while LONG, is SO CRUCIAL to any Lyme patient. It's like a survival guide. It is a must read for all of us.

It explains, from a doctor's point of view, but in terms that are understood by the general public, the reasons for proper diet, different medications, and more, more, more.

I want everyone I ever meet to understand the truth about this disease. It has taken so many lives unnecessarily and severely reduced the quality of exponentially more.

I am here to do my best at offering facts and things I've learned over the course of my journey. PM me anytime. And make sure you read Burrascano's paper. I printed a copy off to keep with me, because it's so critical.

Blessings to you, and wellness!

Lauren

Was diagnosed with Autonomic Disorder, POTS, Interstitial Cystitis, and Fibromyalgia. True story is I have late stage Lyme which has cuased these things. Just began the fight in October 2011, and WILL be victorious! Positive bands: 23 and 41.

Not a doctor, not anyone of any legal standing... just someone on the search.

(Translation: Please do not take anything I say as medical advice. Always see your doctor when needing medical advice.)

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.
--- The discussion has been locked ---


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