Re: Where to start?

[Guest guest]

lorijkarasek wrote:

>

> Hi. Like many of you I've been all over to doctors with no relief to date.

Hubby still researching. Meanwhile my life spirals downward as a person with

Lymes, Chronic Fatigue, Fibromyalgia, DDD,(Degenerative Disc Disease) PCOS

(Polycystic ovary syndrome) and a host of auto-immune problems.

>

> Forgive me for asking again, but what do I need to treat first? How? Where? I

have decent insurance. Located in Northwest Ohio. Age 43.

>

> Also, I want to give my primary care doctor info on LDN when I see her Friday,

but I need more than just the study info. I need dosage info. Can anyone

please help me?

>

You're all in my thoughts and prayers. Thank you for sharing on here. Reading

your posts is the only life I have. Thank you for keeping me and others

company.

Lori:

Here is a good website www.lowdosenaltrexone.org www.ldninfo.org for the ldn

and the Lymes Disease Foundation has a list of Doctors by states

that specialized in Lyme Disease http://www.aldf.com/physicianReferral.shtml or

type in American Lyme Disease Foundation and it seems to be a good informative

site.

If it were me, I would treat the disease or syndrome that is bothering me the

most. Fibromylagia has the symptoms of chronic Fatigue and the auto immune

problems co exist. Lyme Disease might be creating some of the auto immune

symptoms and getting treatment for that is imperative.

I live in Austin Tx and a very well recognized Nurse Practitioner, who had to

leave Texas and practice in California because some Texas physicians did not

want the public to think that the disease was as prevalent as it really is.

Her name is GInger Savely and she is contributing to a new book , Insights Into

Lyme Disease Treatment and has Doctors who have written chapters on each of

their treatments.

Prior to treating tick-borne diseases, Dr. Savely had a special interest in

fibromyalgia and chronic fatigue syndrome and gave professional presentations on

these topics, including co-presentation of original research at the 1996 chronic

fatigue syndrome conference in San Francisco.

Connie Strasheim co wrote the book above and her website states she wrote The

Lyme Disease Survival Guide. Connie lives in Colorado and maintains a

well-known Lyme-related blog: www.lymebytes.blogspot.com.

I hope these specific references help you. I also have fibromyalgia and have

been diagnosed with connective disease disorder and before moving to Texas, I

had Reynauds and all sorts of auto immune problems.

You really have to keep your body well maintained and nutrition, physical,

mental and it is hard when you are dealing with pain problems. I relate to Dr.

Forest Tenants' Survival Guide for Intractable Pain Patients and you can

download this for free by entering the information in an internet search or in

paintopics.org.I

I hope this helps you and please let us know about your progress. I would also

start keeping a pain diary which is a journal of your symptoms and helps to

identify what treatment is helping. It is amazing when your write it down you

can see what is and is not helping and it helps your Doctor also.

You can download one from the internet by typing in Pain Diary or Pain Journal.

Let me know if you don't find one you like and I will send you what I have

found.

Good Luck Bennie

>

>

[Guest guest]

>Lori wrote:

" a person with Lymes, Chronic Fatigue, Fibromyalgia, DD,(Degenerative Disc

Disease) PCOS (Polycystic ovary syndrome) and a host of auto-immune problems.

>Forgive me for asking again, but what do I need to treat first?

How? Where? I have decent insurance. Located in Northwest Ohio.

Age 43.

>Also, I want to give my primary care doctor info on LDN when I

see her Friday, but I need more than just the study info. I need dosage info.

Can anyone please help me? "

Lori,

First of all, gentle hugs! Now this is just advice from my experience. I'm not a

nurse/doctor. I would agree that a lot

of the things have similar symptoms so be encouraged with the knowledge that

treatment of one may very well ease another!

I've had Lyme Disease (I had rocky mountain spotted tick fever

at age 7- I think ticks have a thing for me!) and THANKFULLY did

not have the longterm effects- but girl. I was EXHAUSTED and just...SORE like

I'd been in a car wreck for a good 6 to 8 weeks.

So just my small amount of understanding on Fibro, Lyme, Auto-immune problems

(I'm not sure on DDD personally)- ALL those involve really bad fatigue, and PCOS

is something that involves hormones so I'm sure

it could make you exhausted as well. My sister has that and she

began to manage it finally under an Endocrinologist. Once she got

on the proper meds, and also diet (certain foods make it far worse) she was a

new woman! .

I don't know exactly who you would see for the Lyme's (isn't it a nerve issue?

I'm not sure) but maybe I would start with asking my doctor for a pain

management doctor referral (he/she should be communicating with all your other

doctors to keep your files up to date and change your dose of pain meds as the

pain is better managed due to treatment, as well as an Endocrinologist, An

Orthopedic would handle the DDD I think, am I right, group? LOL.

I am uninsured and fell in a hospital on a wet floor in the lobby;

my husband was in the hospital at the time, so until my judgment is paid by them

I'm just dealing with an angel of a pain management doctor who took pity and

sees and does my Bier Blocks for free. For that reason it IS possible he does

more in my situation that a regular, part of a system of doctors, guy would- but

I still think the first step would be controlling the pain where you can think

more clearly. I also see my PCP about every 3 months.

If you don't NEED referrals, were it me, I would still start with pain

management because they should be able to have some level of experience with

every condition you mentioned and lead you in the right direction. Just my

thoughts and I really hope it helps! Good luck!

[Guest guest]

Lori, *I deleted s response by accident and apologize so I am just going

to address for Lori again on what I remembered asked or advised Lori so

kindly.

Pain Management Doctors are not Lyme Disease Doctors and there is such a big

controversy on the treatment of Lymes disease as General Practitioner are

generally not endorsing some of the treatment Lyme Disease Doctors are doing but

it working.

The auto immune diseases can be seen by an immune specialist and Loris is taking

a med now that supports and enhances the immune system.

Degenerative Disc Disease will cause you to be physically inactive because of

the pain depending on the extent and needs treatment by a Pain Management

specialist that deals with that.

The Lymes Doctor like I mentioned with the website that has Lyme Disease

specialist will know how to treat the Lymes disease and chronic fatigue.

The pain management Doctor might specialize in Fibromylagis, some do and some

don't, and the Lymes Disease Doctor will be treating some of the same symptoms

as fibromylagia has. Fibromylagia patients need sleep in the Deep REM cycle so

depending on the phase of Lori is in and understands the triggers, depends on

what she needs. There are only a few medications that treat Fibromylagia,

Lyrica, Neurotin, Savella, Cymbalta, and Guafasin. Some Physical Therapy with

heat and massage if you can stand to be touched is what my Doctor said. I have

tried the Lyrica, Cymbalta, Guafasin, Neurotin but I keep my triggers down to

prevent a flare.

PCOS =is an endorcrine disease and needs to be followed by a endocrinologist and

GYN as other symptoms besides cysts exist and needs to be followed.

So, from my experience and there were many sites on the internet for what you

have for support and contacts.

If it were me I would find my Lyme Disease Doctor, Pain Management Doctor, then

the Endocrinologists. If your General Practitioner cannot give you, or you do

not have anything for pain and depending on the pain, you need to contact a Pain

Management Doctor.

Usually, when you have multiple problems, the Pain Management Doctor still

writes the prescription for pain meds no matter what they are for as you have to

enter a pain management contract.

Oh, by the way, if you do not treat Lymes disease effectively, it will continue

to destroy organs, the heart, encephalitis, and other problems

Diagnosis of late-stage Lyme disease is often complicated by a multifaceted

appearance and nonspecific symptoms, prompting one reviewer to call Lyme the new

" great imitator. " [80] Lyme disease may be misdiagnosed as multiple sclerosis,

rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, lupus, Crohn's

disease or other autoimmune and neurodegenerative diseases.

So Lori, I if I were you I would keep a pain journal, this link

ttp://www.painfoundation.org/learn/publications/target-notebook.html tells you

why and how to keep a pain journal. They call it the target pain notebook and

it is Great, it goes thru step by step what to enter and it can be kept in a

small three ring binder and you just print pages off. Americn Pain Foundation

has the Pain Patients Bill of RIghts, Since I forgot how to tiny URL on my Mac,

you go to the American Pain Foundation website, click on the about pain section,

then click on publication and the Target Pain Notebook along with other

publications are there and it has all the sections you need, pages to list your

pain levels, what worked and what didn't, your medication list, doctor lists,

and a progress chart you can place dots and see when you do better or worse and

help identify your triggers.

My pain dairy helped me immensely but this is really nice as they have pages you

can print out for free and you don't have to make one every month before you go

to the Doctor.

There is also a Notebook for Doctors on Pain Patients I am going to take to my

Doctor along with the Pain Jornal.

Sorry this is so long but I wanted to address the concerns about conditions that

co exist and many immune disorder so this and Lymes can stay dormant and then

act up again and the Lymes specialists are giving antibiotics and their

therapies longer thus making some General Practitioners upset.

Good Luck and as others have said Lori, call the hospitals that have a teaching

university and ask for the speciality Doctors you need and read their reviews

online.

Let us know how you are. Bennie