Re: I didn't know where else to turn....

[Guest guest]

Hi Nanci,I can see your fustration you are having and thought maybe acupuncture can help and balance your HPA axis which is essentially what is out of whack. I was able to ween off of 30mg of HC and thyroid with acupuncture. You hear that it's good for fertility problems. Well, probably because it helps your hormones. I know it can be expensive. I was desperate and had no other options and maybe it could be an option for yourself.Good luck, To: rhythmicliving Sent: Saturday, March 17, 2012 11:48 AM Subject: I didn't know where else to turn....

Hi everyone,

I am not new to the group but haven't posted in awhile.

I didn't know where else to turn.

I am in quite a difficult situation and would appreciate it if the group could help me in some way.

It has nothing to do with the WP, although I was on it last year and thankfully only 7 weeks.

What the WP did to me seems irreparable and ever since using it, my whole body suffered. I was NOT this way prior to the WP. I believe it threw me into a tail spin and I can't recover.

I believe it threw my entire endocrine system out of whack and I find myself in adrenal fatigue with highs and lows of cortisol, it messed up my thyroid and did a number on my hormones. every part of me has been affected.

I am 56 and haven't had a period in over 4 yrs. My estradiol is low and my Progesterone is tanked. E at last draw was only 34.6 and P was a mere 0.3

I have slightly high testosterone and DHEAS.

I am an emotional basketcase, crying, depressed, overly anxious all the time and suffer from a myriad of health problems. I have a neck injury that prevents me from driving or working. I am stuck in this house 24/7 with no friends and I am lonely.

I can't do the simplest of tasks without becoming shaky. I vibrate inside all the time. I have no patience and have forgotten how to smile or laugh.

I think its been over 7 yrs since I had intimate relations with my husband whom I don't love and should have left yrs ago.

my kids are all gone and live all over the country. I never see them or my grandkids.

My cortisol is high on serum in the mornings but according to saliva tests it is slightly low. but I go very high in the evenings and night. I don't sleep much.

I have been to numerous doctors and no one can seem to figure this out, although they have given me medications for the thyroid and hormones and told me to take adaptogens for the adrenals. nothing seems to work. I am worse.

I am hot and cold, have numerous hot flushes, my temps are low, have thinning eyebrows,my eyes are swollen, losing my hair, no libido, shake rattle and roll and I wake up in panic mode everyday, I dont look forward to the nights or days anymore. I have no life.....

I think I have fibro because I am always in muscle pain with aches and very bad tightness and rigidity throughout my neck,back and hips.

I have terrible sciatica in both my legs too.

I belong to several FB groups and they include lyme. I was tested by Igenex out in CA and they found I had a positive band 41 and 66 with an indeterminate of band 39. I was negative for PCR. I went to an infectious disease doctor, who the groups are totally against because they follow the CDC and ISAD protocol and not the ILADS protocol (which lyme literate doctors follow) The ID doctor does not believe I have lyme nor did I test positive with Igenex standards. I don't have some of the co-infectiosn that are associated with lyme. no testing was done for babesia or bartonella. only erhlichia and ANA. the bands on the Quest labs for lyme only tested for band 41 (IgG) and no others were positive. the groups of course don't believe any lab but Igenex and they said I have it. so I am freaking out a lot.

My doctor gave me the name of a lyme doctor in NJ and I made an appt. but I have no money to pay him. all lyme doctors do not take insurance and they charge outlandish fees. I don't know what to do. I am scared to death.

I take thyroid meds but not sure if I need them. I just recently started the hormones again after starting and stopping and starting and stopping them. they really scare me and ever since the WP, it seems they don't agree with me at all. I am not sleeping now since re-starting them. I am only on Bi-Est 0.9mg/ml and 50mg of progesterone in cream form. I was taking oral trouches for the P but stopped them.

I had cancer 2 yrs ago and have been too sick and not up to going back to the oncologist to see if I am still in remission. the one thing that could kill me I have put on the back burner.

I also take Rhodiola, holy basil, PS, GABA and sometimes Ashwaganda to support the adrenals but honestly they are NOT working. due to recent events I have suffered worse. my precious son, who is 30 and was a biology teacher, left 2 weeks ago into the Navy. he couldn't get a teaching job anywhere. as the time drew closer to when he was leaving, I cried and cried and became so depressed. it really threw me into another tail spin and I can't recover. my adrenals took a big hit again. I am much worse now then ever. i don't know what to do to fix this mess.

nothing I am doing is helping, nothing!!!

I don't feel lyme sick, but I feel adrenal sick. I don't know whether to cancel the lyme doctor appt and go to Dr. Lindner in PA who treats adrenals, thyroid and hormones and seems like he knows what he is talking about on his website. both doctors don't take insurance. however my husband who doesn't believe I have lyme (he doesn't believe I have anything and wants me to stop taking all my medications and hormones and let nature take its course) he gives me a hard time about everything and doesn't want to take me to any doctor. plus he bitches about the lack of money.

all I know is that ever since WP came into my life (I curse that protocol) I have NOT been me!!!! now I need to fix the mess but I don't know how and nothing is making me feel any better. oh, I also take LDN (low dose naltrexone) for the fibro pains which of course the lyme people say is coming from lyme. so does this mean that everyone with fibro has lyme disease?

Can anyone give me hope, help and advice. am I the only one who has suffered by the hand of Suzie?

Please please, I am so desperate. all i think about is ending this misery because I don't see any light at the end of the dark tunnel. all I think about is the bad and the what if's and the unknowns. and if what I am doing is harming. no one is helping me. I feel so lost and scared.

Sorry for this rant, but I didn't know where else to go......

take care and be well,

Love,

Nanci

[Guest guest]

Nanci, go see the thyroid/adrenal doctor in PA.

http://www.stopthethyroidmadness.com/adrenal-info

Sam

-----

> Hi everyone,

>

> I am not new to the group but haven't posted in awhile.

>

> I didn't know where else to turn.

>

> I am in quite a difficult situation and would appreciate it if the group

> could help me in some way.

>

> It has nothing to do with the WP, although I was on it last year and

> thankfully only 7 weeks.

>

> What the WP did to me seems irreparable and ever since using it, my whole

> body suffered. I was NOT this way prior to the WP. I believe it threw me

> into a tail spin and I can't recover.

>

> I believe it threw my entire endocrine system out of whack and I find

> myself in adrenal fatigue with highs and lows of cortisol, it messed up my

> thyroid and did a number on my hormones. every part of me has been

> affected.

> I am 56 and haven't had a period in over 4 yrs. My estradiol is low and

> my Progesterone is tanked. E at last draw was only 34.6 and P was a mere

> 0.3

> I have slightly high testosterone and DHEAS.

>

> I am an emotional basketcase, crying, depressed, overly anxious all the

> time and suffer from a myriad of health problems. I have a neck injury

> that prevents me from driving or working. I am stuck in this house 24/7

> with no friends and I am lonely.

> I can't do the simplest of tasks without becoming shaky. I vibrate inside

> all the time. I have no patience and have forgotten how to smile or laugh.

> I think its been over 7 yrs since I had intimate relations with my husband

> whom I don't love and should have left yrs ago.

>

> my kids are all gone and live all over the country. I never see them or my

> grandkids.

> My cortisol is high on serum in the mornings but according to saliva tests

> it is slightly low. but I go very high in the evenings and night. I don't

> sleep much.

>

> I have been to numerous doctors and no one can seem to figure this out,

> although they have given me medications for the thyroid and hormones and

> told me to take adaptogens for the adrenals. nothing seems to work. I am

> worse.

> I am hot and cold, have numerous hot flushes, my temps are low, have

> thinning eyebrows,my eyes are swollen, losing my hair, no libido, shake

> rattle and roll and I wake up in panic mode everyday, I dont look forward

> to the nights or days anymore. I have no life.....

>

> I think I have fibro because I am always in muscle pain with aches and

> very bad tightness and rigidity throughout my neck,back and hips.

> I have terrible sciatica in both my legs too.

>

> I belong to several FB groups and they include lyme. I was tested by

> Igenex out in CA and they found I had a positive band 41 and 66 with an

> indeterminate of band 39. I was negative for PCR. I went to an

> infectious disease doctor, who the groups are totally against because they

> follow the CDC and ISAD protocol and not the ILADS protocol (which lyme

> literate doctors follow) The ID doctor does not believe I have lyme nor

> did I test positive with Igenex standards. I don't have some of the

> co-infectiosn that are associated with lyme. no testing was done for

> babesia or bartonella. only erhlichia and ANA. the bands on the Quest

> labs for lyme only tested for band 41 (IgG) and no others were positive.

> the groups of course don't believe any lab but Igenex and they said I have

> it. so I am freaking out a lot.

>

> My doctor gave me the name of a lyme doctor in NJ and I made an appt. but

> I have no money to pay him. all lyme doctors do not take insurance and

> they charge outlandish fees. I don't know what to do. I am scared to

> death.

> I take thyroid meds but not sure if I need them. I just recently started

> the hormones again after starting and stopping and starting and stopping

> them. they really scare me and ever since the WP, it seems they don't

> agree with me at all. I am not sleeping now since re-starting them. I am

> only on Bi-Est 0.9mg/ml and 50mg of progesterone in cream form. I was

> taking oral trouches for the P but stopped them.

> I had cancer 2 yrs ago and have been too sick and not up to going back to

> the oncologist to see if I am still in remission. the one thing that

> could kill me I have put on the back burner.

>

> I also take Rhodiola, holy basil, PS, GABA and sometimes Ashwaganda to

> support the adrenals but honestly they are NOT working. due to recent

> events I have suffered worse. my precious son, who is 30 and was a biology

> teacher, left 2 weeks ago into the Navy. he couldn't get a teaching job

> anywhere. as the time drew closer to when he was leaving, I cried and

> cried and became so depressed. it really threw me into another tail spin

> and I can't recover. my adrenals took a big hit again. I am much worse

> now then ever. i don't know what to do to fix this mess.

> nothing I am doing is helping, nothing!!!

> I don't feel lyme sick, but I feel adrenal sick. I don't know whether to

> cancel the lyme doctor appt and go to Dr. Lindner in PA who treats

> adrenals, thyroid and hormones and seems like he knows what he is talking

> about on his website. both doctors don't take insurance. however my

> husband who doesn't believe I have lyme (he doesn't believe I have

> anything and wants me to stop taking all my medications and hormones and

> let nature take its course) he gives me a hard time about everything and

> doesn't want to take me to any doctor. plus he bitches about the lack of

> money.

>

> all I know is that ever since WP came into my life (I curse that protocol)

> I have NOT been me!!!! now I need to fix the mess but I don't know how

> and nothing is making me feel any better. oh, I also take LDN (low dose

> naltrexone) for the fibro pains which of course the lyme people say is

> coming from lyme. so does this mean that everyone with fibro has lyme

> disease?

>

> Can anyone give me hope, help and advice. am I the only one who has

> suffered by the hand of Suzie?

>

> Please please, I am so desperate. all i think about is ending this misery

> because I don't see any light at the end of the dark tunnel. all I think

> about is the bad and the what if's and the unknowns. and if what I am

> doing is harming. no one is helping me. I feel so lost and scared.

>

> Sorry for this rant, but I didn't know where else to go......

>

> take care and be well,

> Love,

> Nanci

>

>

>

>

[Guest guest]

nanci,i am seeing dr. lindner. he can help you with assessing and balancing what's going on hormonally with you -- which sounds like it urgently needs to be done, given what you're describing. yes, the initial cost is rather high, but not outrageous, and includes email q's and a's. he's very good about responding quickly and, actually, prefers to work with people this way, since, as he says, finding the right balance with hormones can take some time and a lot of feedback. after your initial consultation and the follow-up phone appointment, the costs to work with him go way, way down.carol, his secretary, is extremely nice and helpful. if you have questions about finances or anything else, you canemail her at carol@....i also have lyme disease, which was, unfortunately not properly identified for decades. lyme can really mess up hormones and hormonal balance, along with all the other awful things it can do. i'm sorry that your husband isn't supportive of the fact that chronic lyme can and does happen. my advice: see dr. lindner to start getting a handle on your hormonal situation and then, whether it's the LLMD in New Jersey or someone else. . . or trying alternative lyme/co-infection protocol by yourself (like salt/C, Buhner's herbal lyme protocol, etc.). . . start addressing the lyme. if you have any questions about dr. linder, i'd be happy to do my best to answer them.hollis Nanci, go see the thyroid/adrenal doctor in PA.http://www.stopthethyroidmadness.com/adrenal-infoSam-----> Hi everyone,>> I am not new to the group but haven't posted in awhile.>> I didn't know where else to turn.>> I am in quite a difficult situation and would appreciate it if the group> could help me in some way.>> It has nothing to do with the WP, although I was on it last year and> thankfully only 7 weeks.>> What the WP did to me seems irreparable and ever since using it, my whole> body suffered. I was NOT this way prior to the WP. I believe it threw me> into a tail spin and I can't recover.>> I believe it threw my entire endocrine system out of whack and I find> myself in adrenal fatigue with highs and lows of cortisol, it messed up my> thyroid and did a number on my hormones. every part of me has been> affected.> I am 56 and haven't had a period in over 4 yrs. My estradiol is low and> my Progesterone is tanked. E at last draw was only 34.6 and P was a mere> 0.3> I have slightly high testosterone and DHEAS.>> I am an emotional basketcase, crying, depressed, overly anxious all the> time and suffer from a myriad of health problems. I have a neck injury> that prevents me from driving or working. I am stuck in this house 24/7> with no friends and I am lonely.> I can't do the simplest of tasks without becoming shaky. I vibrate inside> all the time. I have no patience and have forgotten how to smile or laugh.> I think its been over 7 yrs since I had intimate relations with my husband> whom I don't love and should have left yrs ago.>> my kids are all gone and live all over the country. I never see them or my> grandkids.> My cortisol is high on serum in the mornings but according to saliva tests> it is slightly low. but I go very high in the evenings and night. I don't> sleep much.>> I have been to numerous doctors and no one can seem to figure this out,> although they have given me medications for the thyroid and hormones and> told me to take adaptogens for the adrenals. nothing seems to work. I am> worse.> I am hot and cold, have numerous hot flushes, my temps are low, have> thinning eyebrows,my eyes are swollen, losing my hair, no libido, shake> rattle and roll and I wake up in panic mode everyday, I dont look forward> to the nights or days anymore. I have no life.....>> I think I have fibro because I am always in muscle pain with aches and> very bad tightness and rigidity throughout my neck,back and hips.> I have terrible sciatica in both my legs too.>> I belong to several FB groups and they include lyme. I was tested by> Igenex out in CA and they found I had a positive band 41 and 66 with an> indeterminate of band 39. I was negative for PCR. I went to an> infectious disease doctor, who the groups are totally against because they> follow the CDC and ISAD protocol and not the ILADS protocol (which lyme> literate doctors follow) The ID doctor does not believe I have lyme nor> did I test positive with Igenex standards. I don't have some of the> co-infectiosn that are associated with lyme. no testing was done for> babesia or bartonella. only erhlichia and ANA. the bands on the Quest> labs for lyme only tested for band 41 (IgG) and no others were positive.> the groups of course don't believe any lab but Igenex and they said I have> it. so I am freaking out a lot.>> My doctor gave me the name of a lyme doctor in NJ and I made an appt. but> I have no money to pay him. all lyme doctors do not take insurance and> they charge outlandish fees. I don't know what to do. I am scared to> death.> I take thyroid meds but not sure if I need them. I just recently started> the hormones again after starting and stopping and starting and stopping> them. they really scare me and ever since the WP, it seems they don't> agree with me at all. I am not sleeping now since re-starting them. I am> only on Bi-Est 0.9mg/ml and 50mg of progesterone in cream form. I was> taking oral trouches for the P but stopped them.> I had cancer 2 yrs ago and have been too sick and not up to going back to> the oncologist to see if I am still in remission. the one thing that> could kill me I have put on the back burner.>> I also take Rhodiola, holy basil, PS, GABA and sometimes Ashwaganda to> support the adrenals but honestly they are NOT working. due to recent> events I have suffered worse. my precious son, who is 30 and was a biology> teacher, left 2 weeks ago into the Navy. he couldn't get a teaching job> anywhere. as the time drew closer to when he was leaving, I cried and> cried and became so depressed. it really threw me into another tail spin> and I can't recover. my adrenals took a big hit again. I am much worse> now then ever. i don't know what to do to fix this mess.> nothing I am doing is helping, nothing!!!> I don't feel lyme sick, but I feel adrenal sick. I don't know whether to> cancel the lyme doctor appt and go to Dr. Lindner in PA who treats> adrenals, thyroid and hormones and seems like he knows what he is talking> about on his website. both doctors don't take insurance. however my> husband who doesn't believe I have lyme (he doesn't believe I have> anything and wants me to stop taking all my medications and hormones and> let nature take its course) he gives me a hard time about everything and> doesn't want to take me to any doctor. plus he bitches about the lack of> money.>> all I know is that ever since WP came into my life (I curse that protocol)> I have NOT been me!!!! now I need to fix the mess but I don't know how> and nothing is making me feel any better. oh, I also take LDN (low dose> naltrexone) for the fibro pains which of course the lyme people say is> coming from lyme. so does this mean that everyone with fibro has lyme> disease?>> Can anyone give me hope, help and advice. am I the only one who has> suffered by the hand of Suzie?>> Please please, I am so desperate. all i think about is ending this misery> because I don't see any light at the end of the dark tunnel. all I think> about is the bad and the what if's and the unknowns. and if what I am> doing is harming. no one is helping me. I feel so lost and scared.>> Sorry for this rant, but I didn't know where else to go......>> take care and be well,> Love,> Nanci>>>>

[Guest guest]

You sound like Lyme and possibly co-infections. On the IgeneX Western Blot,

I had a positive band 41 and " IND " on some other bands. My LLMD took it

seriously and I'm being treated for Lyme. I am 80% better. For years, I

blamed my illness on hormones and thyroid. While Lyme killed my thyroid, my

later problems were not hormones or thyroid. It is Lyme and Babesia. You

sound in terrible shape. Perhaps you can get help for depression/sleep from

a local mental health or low-cost clinic? Here are some resources for you.

Bridges To Access -

http://www.bridgestoaccess.com/

The GSK program providing low cost or no cost medications for non-medicare

patients or for people who do not have prescription coverage. It is a great

program for Malarone and Mepron.

Clinic Of Angels

http://www.clinicofangels.org/

http://www.clinicofangels.org/Clinic%20of%20Angels%20Application%20for%20Ser

vices%20with%20income%20chart%20New%20(2).pdf (application form)

The Clinic of Angels is a 501© 3 non-profit organization founded in 2005

by Cichon MD. Dr. Cichon, a board certified Internal Medicine and

Infectious Disease physician has practiced in the Tampa Bay area for over 30

years. His purpose in starting this organization was to help chronically ill

patients by providing financial resources to help in their medical care.

Discount for Condensed Cowden Support Program via Nutramedix -

http://www.nutramedix.com/company.asp

http://www.nutramedix.com/contact-us.asp (phone numbers)

The Nutramedix company more than a year ago offered for a while, free

Condensed Cowden Support Programs (CCSP) to select Lyme patients. Nutramedix

no longer offers that but if someone with severe Lyme disease & /or

co-infections wants to go on the CCSP but can't afford it, they can contact

Nutramedix to discuss their financial situation & request a discount based

on financial need.

GSK-Access -

http://www.gsk-access.com/index.html (home page)

http://www.gsk-access.com/medicines/medicine-list.html (list of medicines)

GSK Access is a GlaxoKline patient assistance program. It provides GSK

prescription medicines-at no charge-to qualified patients who are enrolled

in a Medicare Part D Prescription Drug Plan.

L.E.A.P. - Financial Assistance Program

http://www.leaparizona.com/financialassistance.htm

There is very little financial assistance available for children and adults

suffering with Lyme disease. We at L.E.A.P. are attempting to raise funds

for this very purpose for patients in Arizona and across the United States.

Our program consists of a financial assistance application which is

confidentially reviewed and verified during the approval process. When

patients are approved for assistance, all funds disbursed on their behalf

are sent directly to their providers/creditors after insurance payments and

balance verification. We make sure that grants and donors' contributions

are used appropriately.

In addition, L.E.A.P. has a partnership with Amazon.com. Amazon makes a

donation to L.E.A.P each and every time a purchase is made using this link:

http://www.amazon.com/? & tag=lymeeducation-20 & camp=15345 & creative=331689 & link

Code=ur1 & adid=06609TZGXCZ7F7YH5GDM & Pass this on!

Lyme Aid 4Kids -

http://www.needymeds.org/co_pay_program.taf?_function=detail & program_id=268

(overview/contact info)

http://www.LymeDiseaseAssociation.org/index.php?option=com_content & view=arti

cle & id=592 & Itemid=38 (application)

The LymeAid 4 Kids (LA4K) fund began in 2004 and has helped children all

over the U.S. and in Canada. Developed with the help of author Amy Tan, the

fund is for children who do not have/receive insurance coverage for Lyme

disease treatment for children and have economic difficulties. Donations can

be made on-line to LDA help this LA4K fund as there are so many applicants,

the fund does run out of money frequently.

Lyme Tap -

http://www.lymetap.com/

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance

program to provide assistance for initial Lyme-related lab tests to patients

who demonstrate true financial need. If approved, you may be reimbursed for

up to 75% of your out-of-pocket costs of testing from a qualified

CLIA/Medicare approved laboratory of your choice. Funds are limited & are

available on a first-come, first-served basis. Children under 18 years of

age are given priority. The intention of this program is to help as many

patients in need as possible. It is not intended to cover insurance

deductibles or to cover patients not truly in financial need. Payments of

approved grants may take several weeks.

This nationwide assistance program was made possible by a very generous

donation from IGeneX Inc., a CLIA/Medicare licensed laboratory. Any

CLIA/Medicare licensed laboratory may be selected for testing: you do not

have to use IGeneX for this program.

Modest Needs -

http://www.modestneeds.org/explore/

http://www.modestneeds.org/intro/

Modest Needs offers three main types of grants: Self-Sufficiency Grants,

Back-to-Work Grants, and Independent Living Grants. The grants we offer at

Modest Needs come with no strings attached and do not ever have to be

repaid.

Modest Needs' grant programs are designed PRIMARILY to assist individuals

and families who generally are able to pay their monthly bills with no help

from anyone, who don't qualify for conventional types of social or

charitable assistance, and who are facing a financial crisis because they've

encountered a single, unexpected expense they just can't afford on their

own.

Of course, we also offer grants that are designed to assist people who are

in the process of returning to work, persons who need help to afford

accessibility equipment, and small non-profit organizations. But, in

general, Modest Needs just does not have the resources to assist individuals

or families who are homeless, have no regular income of their own, or need /

receive ongoing help to afford the basics.

Partnership for Prescription Assistance -

http://www.pparx.org/

The Partnership for Prescription Assistance helps qualifying patients

without prescription drug coverage get the medicines they need through the

program that is right for them. Many will get their medications free or

nearly free. The Partnership for Prescription Assistance will help you find

the program that's right for you, free of charge. Remember,you will never be

asked for money by a PPA Call Center representative, or on this Web site.

Needy Meds -

http://www.needymeds.org/resourcepages/lyme%20disease.htm

This is a Patient Assistance Programs (PAPs). Programs offered by

pharmaceutical companies to help those most in need gain access to their

medications at no or low cost. Each program has varying financial and

insurance guidelines - when in doubt, call the program. To find the specific

PAP information for a specific drug click on the list (on web page). You

will then be taken to a listing of all the programs available for that

medication.

http://www.needymeds.org/free_clinics.taf

This webpage, also part of Needy Meds, is specifically for those without

insurance or unable to pay for a visit with a physician, NeedyMeds has

compiled a nationwide list of free, low cost, and sliding scale clinics.

*Granted these are not LLMD's specifically, probably mostly Family

Practitioners, Infectious Disease, etc, basically doctors that have general

knowledge about Lyme.

Prescription Hope -

http://www.prescriptionhope.com/

A program helping people get prescriptions at a much lower price. So if you

are taking antibiotics, iv's, etc, they could be a great resource to look

into. From their website " We assist individuals who need to take

prescription medications, yet lack the income to afford the monthly expense.

Since our founding in 2001 we have assisted thousands of uninsured and

underinsured individuals throughout the United States in obtaining

prescriptions directly from the manufacturer. "

Val

-----Original Message-----

From: rhythmicliving [mailto:rhythmicliving ]

On Behalf Of ndomarew21756

Hi everyone,

I am not new to the group but haven't posted in awhile.

I didn't know where else to turn.

I am in quite a difficult situation and would appreciate it if the group

could help me in some way.

It has nothing to do with the WP, although I was on it last year and

thankfully only 7 weeks.

What the WP did to me seems irreparable and ever since using it, my whole

body suffered. I was NOT this way prior to the WP. I believe it threw me

into a tail spin and I can't recover.

I believe it threw my entire endocrine system out of whack and I find myself

in adrenal fatigue with highs and lows of cortisol, it messed up my thyroid

and did a number on my hormones. every part of me has been affected.

I am 56 and haven't had a period in over 4 yrs. My estradiol is low and my

Progesterone is tanked. E at last draw was only 34.6 and P was a mere 0.3

I have slightly high testosterone and DHEAS.

I am an emotional basketcase, crying, depressed, overly anxious all the time

and suffer from a myriad of health problems. I have a neck injury that

prevents me from driving or working. I am stuck in this house 24/7 with no

friends and I am lonely.

I can't do the simplest of tasks without becoming shaky. I vibrate inside

all the time. I have no patience and have forgotten how to smile or laugh.

I think its been over 7 yrs since I had intimate relations with my husband

whom I don't love and should have left yrs ago.

my kids are all gone and live all over the country. I never see them or my

grandkids.

My cortisol is high on serum in the mornings but according to saliva tests

it is slightly low. but I go very high in the evenings and night. I don't

sleep much.

I have been to numerous doctors and no one can seem to figure this out,

although they have given me medications for the thyroid and hormones and

told me to take adaptogens for the adrenals. nothing seems to work. I am

worse.

I am hot and cold, have numerous hot flushes, my temps are low, have

thinning eyebrows,my eyes are swollen, losing my hair, no libido, shake

rattle and roll and I wake up in panic mode everyday, I dont look forward to

the nights or days anymore. I have no life.....

I think I have fibro because I am always in muscle pain with aches and very

bad tightness and rigidity throughout my neck,back and hips.

I have terrible sciatica in both my legs too.

I belong to several FB groups and they include lyme. I was tested by Igenex

out in CA and they found I had a positive band 41 and 66 with an

indeterminate of band 39. I was negative for PCR. I went to an infectious

disease doctor, who the groups are totally against because they follow the

CDC and ISAD protocol and not the ILADS protocol (which lyme literate

doctors follow) The ID doctor does not believe I have lyme nor did I test

positive with Igenex standards. I don't have some of the co-infectiosn that

are associated with lyme. no testing was done for babesia or bartonella.

only erhlichia and ANA. the bands on the Quest labs for lyme only tested for

band 41 (IgG) and no others were positive. the groups of course don't

believe any lab but Igenex and they said I have it. so I am freaking out a

lot.

My doctor gave me the name of a lyme doctor in NJ and I made an appt. but I

have no money to pay him. all lyme doctors do not take insurance and they

charge outlandish fees. I don't know what to do. I am scared to death.

I take thyroid meds but not sure if I need them. I just recently started

the hormones again after starting and stopping and starting and stopping

them. they really scare me and ever since the WP, it seems they don't agree

with me at all. I am not sleeping now since re-starting them. I am only on

Bi-Est 0.9mg/ml and 50mg of progesterone in cream form. I was taking oral

trouches for the P but stopped them.

I had cancer 2 yrs ago and have been too sick and not up to going back to

the oncologist to see if I am still in remission. the one thing that could

kill me I have put on the back burner.

I also take Rhodiola, holy basil, PS, GABA and sometimes Ashwaganda to

support the adrenals but honestly they are NOT working. due to recent events

I have suffered worse. my precious son, who is 30 and was a biology teacher,

left 2 weeks ago into the Navy. he couldn't get a teaching job anywhere. as

the time drew closer to when he was leaving, I cried and cried and became so

depressed. it really threw me into another tail spin and I can't recover.

my adrenals took a big hit again. I am much worse now then ever. i don't

know what to do to fix this mess.

nothing I am doing is helping, nothing!!!

I don't feel lyme sick, but I feel adrenal sick. I don't know whether to

cancel the lyme doctor appt and go to Dr. Lindner in PA who treats adrenals,

thyroid and hormones and seems like he knows what he is talking about on his

website. both doctors don't take insurance. however my husband who doesn't

believe I have lyme (he doesn't believe I have anything and wants me to stop

taking all my medications and hormones and let nature take its course) he

gives me a hard time about everything and doesn't want to take me to any

doctor. plus he bitches about the lack of money.

all I know is that ever since WP came into my life (I curse that protocol)

I have NOT been me!!!! now I need to fix the mess but I don't know how and

nothing is making me feel any better. oh, I also take LDN (low dose

naltrexone) for the fibro pains which of course the lyme people say is

coming from lyme. so does this mean that everyone with fibro has lyme

disease?

Can anyone give me hope, help and advice. am I the only one who has

suffered by the hand of Suzie?

Please please, I am so desperate. all i think about is ending this misery

because I don't see any light at the end of the dark tunnel. all I think

about is the bad and the what if's and the unknowns. and if what I am doing

is harming. no one is helping me. I feel so lost and scared.

Sorry for this rant, but I didn't know where else to go......

take care and be well,

Love,

Nanci

------------------------------------

click here for our webpage http://rhythmicliving.com/

**The group conversation is informational in nature and is not intended as

medical advice.**

[Guest guest]

Val, thank you for posting all of these resources again. This is another of the things I hope to track down.

Gael

You sound like Lyme and possibly co-infections. On the IgeneX Western Blot,I had a positive band 41 and "IND" on some other bands. My LLMD took itseriously and I'm being treated for Lyme. I am 80% better. For years, Iblamed my illness on hormones and thyroid. While Lyme killed my thyroid, mylater problems were not hormones or thyroid. It is Lyme and Babesia. Yousound in terrible shape. Perhaps you can get help for depression/sleep froma local mental health or low-cost clinic? Here are some resources for you.Bridges To Access -http://www.bridgestoaccess.com/The GSK program providing low cost or no cost medications for non-medicarepatients or for people who do not have prescription coverage. It is a greatprogram for Malarone and Mepron. Clinic Of Angels http://www.clinicofangels.org/http://www.clinicofangels.org/Clinic%20of%20Angels%20Application%20for%20Services%20with%20income%20chart%20New%20(2).pdf (application form)The Clinic of Angels is a 501© 3 non-profit organization founded in 2005by Cichon MD. Dr. Cichon, a board certified Internal Medicine andInfectious Disease physician has practiced in the Tampa Bay area for over 30years. His purpose in starting this organization was to help chronically illpatients by providing financial resources to help in their medical care. Discount for Condensed Cowden Support Program via Nutramedix - http://www.nutramedix.com/company.asp http://www.nutramedix.com/contact-us.asp (phone numbers)The Nutramedix company more than a year ago offered for a while, freeCondensed Cowden Support Programs (CCSP) to select Lyme patients. Nutramedixno longer offers that but if someone with severe Lyme disease & /orco-infections wants to go on the CCSP but can't afford it, they can contactNutramedix to discuss their financial situation & request a discount basedon financial need. GSK-Access - http://www.gsk-access.com/index.html (home page) http://www.gsk-access.com/medicines/medicine-list.html (list of medicines) GSK Access is a GlaxoKline patient assistance program. It provides GSKprescription medicines-at no charge-to qualified patients who are enrolledin a Medicare Part D Prescription Drug Plan.L.E.A.P. - Financial Assistance Program http://www.leaparizona.com/financialassistance.htmThere is very little financial assistance available for children and adultssuffering with Lyme disease. We at L.E.A.P. are attempting to raise fundsfor this very purpose for patients in Arizona and across the United States.Our program consists of a financial assistance application which isconfidentially reviewed and verified during the approval process. Whenpatients are approved for assistance, all funds disbursed on their behalfare sent directly to their providers/creditors after insurance payments andbalance verification. We make sure that grants and donors' contributionsare used appropriately. In addition, L.E.A.P. has a partnership with Amazon.com. Amazon makes adonation to L.E.A.P each and every time a purchase is made using this link:http://www.amazon.com/? & tag=lymeeducation-20 & camp=15345 & creative=331689 & linkCode=ur1 & adid=06609TZGXCZ7F7YH5GDM & Pass this on! Lyme Aid 4Kids - http://www.needymeds.org/co_pay_program.taf?_function=detail & program_id=268(overview/contact info)http://www.LymeDiseaseAssociation.org/index.php?option=com_content & view=article & id=592 & Itemid=38 (application) The LymeAid 4 Kids (LA4K) fund began in 2004 and has helped children allover the U.S. and in Canada. Developed with the help of author Amy Tan, thefund is for children who do not have/receive insurance coverage for Lymedisease treatment for children and have economic difficulties. Donations canbe made on-line to LDA help this LA4K fund as there are so many applicants,the fund does run out of money frequently. Lyme Tap -http://www.lymetap.com/ The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistanceprogram to provide assistance for initial Lyme-related lab tests to patientswho demonstrate true financial need. If approved, you may be reimbursed forup to 75% of your out-of-pocket costs of testing from a qualifiedCLIA/Medicare approved laboratory of your choice. Funds are limited & areavailable on a first-come, first-served basis. Children under 18 years ofage are given priority. The intention of this program is to help as manypatients in need as possible. It is not intended to cover insurancedeductibles or to cover patients not truly in financial need. Payments ofapproved grants may take several weeks. This nationwide assistance program was made possible by a very generousdonation from IGeneX Inc., a CLIA/Medicare licensed laboratory. AnyCLIA/Medicare licensed laboratory may be selected for testing: you do nothave to use IGeneX for this program. Modest Needs - http://www.modestneeds.org/explore/ http://www.modestneeds.org/intro/ Modest Needs offers three main types of grants: Self-Sufficiency Grants,Back-to-Work Grants, and Independent Living Grants. The grants we offer atModest Needs come with no strings attached and do not ever have to berepaid. Modest Needs' grant programs are designed PRIMARILY to assist individualsand families who generally are able to pay their monthly bills with no helpfrom anyone, who don't qualify for conventional types of social orcharitable assistance, and who are facing a financial crisis because they'veencountered a single, unexpected expense they just can't afford on theirown. Of course, we also offer grants that are designed to assist people who arein the process of returning to work, persons who need help to affordaccessibility equipment, and small non-profit organizations. But, ingeneral, Modest Needs just does not have the resources to assist individualsor families who are homeless, have no regular income of their own, or need /receive ongoing help to afford the basics. Partnership for Prescription Assistance - http://www.pparx.org/ The Partnership for Prescription Assistance helps qualifying patientswithout prescription drug coverage get the medicines they need through theprogram that is right for them. Many will get their medications free ornearly free. The Partnership for Prescription Assistance will help you findthe program that's right for you, free of charge. Remember,you will never beasked for money by a PPA Call Center representative, or on this Web site. Needy Meds - http://www.needymeds.org/resourcepages/lyme%20disease.htmThis is a Patient Assistance Programs (PAPs). Programs offered bypharmaceutical companies to help those most in need gain access to theirmedications at no or low cost. Each program has varying financial andinsurance guidelines - when in doubt, call the program. To find the specificPAP information for a specific drug click on the list (on web page). Youwill then be taken to a listing of all the programs available for thatmedication.http://www.needymeds.org/free_clinics.taf This webpage, also part of Needy Meds, is specifically for those withoutinsurance or unable to pay for a visit with a physician, NeedyMeds hascompiled a nationwide list of free, low cost, and sliding scale clinics.*Granted these are not LLMD's specifically, probably mostly FamilyPractitioners, Infectious Disease, etc, basically doctors that have generalknowledge about Lyme.Prescription Hope - http://www.prescriptionhope.com/A program helping people get prescriptions at a much lower price. So if youare taking antibiotics, iv's, etc, they could be a great resource to lookinto. From their website "We assist individuals who need to takeprescription medications, yet lack the income to afford the monthly expense.Since our founding in 2001 we have assisted thousands of uninsured andunderinsured individuals throughout the United States in obtainingprescriptions directly from the manufacturer."Val-----Original Message-----From: rhythmicliving [mailto:rhythmicliving ]On Behalf Of ndomarew21756Hi everyone,I am not new to the group but haven't posted in awhile.I didn't know where else to turn.I am in quite a difficult situation and would appreciate it if the groupcould help me in some way.It has nothing to do with the WP, although I was on it last year andthankfully only 7 weeks.What the WP did to me seems irreparable and ever since using it, my wholebody suffered. I was NOT this way prior to the WP. I believe it threw meinto a tail spin and I can't recover.I believe it threw my entire endocrine system out of whack and I find myselfin adrenal fatigue with highs and lows of cortisol, it messed up my thyroidand did a number on my hormones. every part of me has been affected. I am 56 and haven't had a period in over 4 yrs. My estradiol is low and myProgesterone is tanked. E at last draw was only 34.6 and P was a mere 0.3I have slightly high testosterone and DHEAS. I am an emotional basketcase, crying, depressed, overly anxious all the timeand suffer from a myriad of health problems. I have a neck injury thatprevents me from driving or working. I am stuck in this house 24/7 with nofriends and I am lonely.I can't do the simplest of tasks without becoming shaky. I vibrate insideall the time. I have no patience and have forgotten how to smile or laugh.I think its been over 7 yrs since I had intimate relations with my husbandwhom I don't love and should have left yrs ago.my kids are all gone and live all over the country. I never see them or mygrandkids. My cortisol is high on serum in the mornings but according to saliva testsit is slightly low. but I go very high in the evenings and night. I don'tsleep much.I have been to numerous doctors and no one can seem to figure this out,although they have given me medications for the thyroid and hormones andtold me to take adaptogens for the adrenals. nothing seems to work. I amworse.I am hot and cold, have numerous hot flushes, my temps are low, havethinning eyebrows,my eyes are swollen, losing my hair, no libido, shakerattle and roll and I wake up in panic mode everyday, I dont look forward tothe nights or days anymore. I have no life.....I think I have fibro because I am always in muscle pain with aches and verybad tightness and rigidity throughout my neck,back and hips. I have terrible sciatica in both my legs too.I belong to several FB groups and they include lyme. I was tested by Igenexout in CA and they found I had a positive band 41 and 66 with anindeterminate of band 39. I was negative for PCR. I went to an infectiousdisease doctor, who the groups are totally against because they follow theCDC and ISAD protocol and not the ILADS protocol (which lyme literatedoctors follow) The ID doctor does not believe I have lyme nor did I testpositive with Igenex standards. I don't have some of the co-infectiosn thatare associated with lyme. no testing was done for babesia or bartonella.only erhlichia and ANA. the bands on the Quest labs for lyme only tested forband 41 (IgG) and no others were positive. the groups of course don'tbelieve any lab but Igenex and they said I have it. so I am freaking out alot. My doctor gave me the name of a lyme doctor in NJ and I made an appt. but Ihave no money to pay him. all lyme doctors do not take insurance and theycharge outlandish fees. I don't know what to do. I am scared to death.I take thyroid meds but not sure if I need them. I just recently startedthe hormones again after starting and stopping and starting and stoppingthem. they really scare me and ever since the WP, it seems they don't agreewith me at all. I am not sleeping now since re-starting them. I am only onBi-Est 0.9mg/ml and 50mg of progesterone in cream form. I was taking oraltrouches for the P but stopped them.I had cancer 2 yrs ago and have been too sick and not up to going back tothe oncologist to see if I am still in remission. the one thing that couldkill me I have put on the back burner. I also take Rhodiola, holy basil, PS, GABA and sometimes Ashwaganda tosupport the adrenals but honestly they are NOT working. due to recent eventsI have suffered worse. my precious son, who is 30 and was a biology teacher,left 2 weeks ago into the Navy. he couldn't get a teaching job anywhere. asthe time drew closer to when he was leaving, I cried and cried and became sodepressed. it really threw me into another tail spin and I can't recover.my adrenals took a big hit again. I am much worse now then ever. i don'tknow what to do to fix this mess. nothing I am doing is helping, nothing!!!I don't feel lyme sick, but I feel adrenal sick. I don't know whether tocancel the lyme doctor appt and go to Dr. Lindner in PA who treats adrenals,thyroid and hormones and seems like he knows what he is talking about on hiswebsite. both doctors don't take insurance. however my husband who doesn'tbelieve I have lyme (he doesn't believe I have anything and wants me to stoptaking all my medications and hormones and let nature take its course) hegives me a hard time about everything and doesn't want to take me to anydoctor. plus he bitches about the lack of money. all I know is that ever since WP came into my life (I curse that protocol)I have NOT been me!!!! now I need to fix the mess but I don't know how andnothing is making me feel any better. oh, I also take LDN (low dosenaltrexone) for the fibro pains which of course the lyme people say iscoming from lyme. so does this mean that everyone with fibro has lymedisease?Can anyone give me hope, help and advice. am I the only one who hassuffered by the hand of Suzie? Please please, I am so desperate. all i think about is ending this miserybecause I don't see any light at the end of the dark tunnel. all I thinkabout is the bad and the what if's and the unknowns. and if what I am doingis harming. no one is helping me. I feel so lost and scared. Sorry for this rant, but I didn't know where else to go......take care and be well,Love,Nanci------------------------------------click here for our webpage http://rhythmicliving.com/**The group conversation is informational in nature and is not intended asmedical advice.**

[Guest guest]

Hi Nanci

I am sorry yuou're going thru all of this. Maybe try joining my group

CFS-ME-Fibro

Most on my group will tell you that ANY positive with the IGenex test means you

DO have Lyme. I also understand that it is not easy to afford the out of pocket

expense of a doctor who treats stealth infections and that main stream medicine

has little to offer people with them.

As with any stealth infection a positive on one of them (Lyme included) also

most likely means you have more than one co-infection. when a person has

stealth infections, the diseased cells are unable to use hormones efficiently

and so therefore, we need more of them and we still score low on them in tests.

Maybe we can help you sort your issues out on the group.

take care,

>

>

>

> Hi everyone,

>

> I am not new to the group but haven't posted in awhile.

>

> I didn't know where else to turn.

>

> I am in quite a difficult situation and would appreciate it if the group could

help me in some way.

>

> It has nothing to do with the WP, although I was on it last year and

thankfully only 7 weeks.

>

> What the WP did to me seems irreparable and ever since using it, my whole body

suffered. I was NOT this way prior to the WP. I believe it threw me into a tail

spin and I can't recover.

>

> I believe it threw my entire endocrine system out of whack and I find myself

in adrenal fatigue with highs and lows of cortisol, it messed up my thyroid and

did a number on my hormones. every part of me has been affected.

> I am 56 and haven't had a period in over 4 yrs. My estradiol is low and my

Progesterone is tanked. E at last draw was only 34.6 and P was a mere 0.3

> I have slightly high testosterone and DHEAS.

>

> I am an emotional basketcase, crying, depressed, overly anxious all the time

and suffer from a myriad of health problems. I have a neck injury that prevents

me from driving or working. I am stuck in this house 24/7 with no friends and I

am lonely.

> I can't do the simplest of tasks without becoming shaky. I vibrate inside all

the time. I have no patience and have forgotten how to smile or laugh.

> I think its been over 7 yrs since I had intimate relations with my husband

whom I don't love and should have left yrs ago.

>

> my kids are all gone and live all over the country. I never see them or my

grandkids.

> My cortisol is high on serum in the mornings but according to saliva tests it

is slightly low. but I go very high in the evenings and night. I don't sleep

much.

>

> I have been to numerous doctors and no one can seem to figure this out,

although they have given me medications for the thyroid and hormones and told me

to take adaptogens for the adrenals. nothing seems to work. I am worse.

> I am hot and cold, have numerous hot flushes, my temps are low, have thinning

eyebrows,my eyes are swollen, losing my hair, no libido, shake rattle and roll

and I wake up in panic mode everyday, I dont look forward to the nights or days

anymore. I have no life.....

>

> I think I have fibro because I am always in muscle pain with aches and very

bad tightness and rigidity throughout my neck,back and hips.

> I have terrible sciatica in both my legs too.

>

> I belong to several FB groups and they include lyme. I was tested by Igenex

out in CA and they found I had a positive band 41 and 66 with an indeterminate

of band 39. I was negative for PCR. I went to an infectious disease doctor,

who the groups are totally against because they follow the CDC and ISAD protocol

and not the ILADS protocol (which lyme literate doctors follow) The ID doctor

does not believe I have lyme nor did I test positive with Igenex standards. I

don't have some of the co-infectiosn that are associated with lyme. no testing

was done for babesia or bartonella. only erhlichia and ANA. the bands on the

Quest labs for lyme only tested for band 41 (IgG) and no others were positive.

the groups of course don't believe any lab but Igenex and they said I have it.

so I am freaking out a lot.

>

> My doctor gave me the name of a lyme doctor in NJ and I made an appt. but I

have no money to pay him. all lyme doctors do not take insurance and they charge

outlandish fees. I don't know what to do. I am scared to death.

> I take thyroid meds but not sure if I need them. I just recently started the

hormones again after starting and stopping and starting and stopping them. they

really scare me and ever since the WP, it seems they don't agree with me at all.

I am not sleeping now since re-starting them. I am only on Bi-Est 0.9mg/ml and

50mg of progesterone in cream form. I was taking oral trouches for the P but

stopped them.

> I had cancer 2 yrs ago and have been too sick and not up to going back to the

oncologist to see if I am still in remission. the one thing that could kill me

I have put on the back burner.

>

> I also take Rhodiola, holy basil, PS, GABA and sometimes Ashwaganda to support

the adrenals but honestly they are NOT working. due to recent events I have

suffered worse. my precious son, who is 30 and was a biology teacher, left 2

weeks ago into the Navy. he couldn't get a teaching job anywhere. as the time

drew closer to when he was leaving, I cried and cried and became so depressed.

it really threw me into another tail spin and I can't recover. my adrenals took

a big hit again. I am much worse now then ever. i don't know what to do to

fix this mess.

> nothing I am doing is helping, nothing!!!

> I don't feel lyme sick, but I feel adrenal sick. I don't know whether to

cancel the lyme doctor appt and go to Dr. Lindner in PA who treats adrenals,

thyroid and hormones and seems like he knows what he is talking about on his

website. both doctors don't take insurance. however my husband who doesn't

believe I have lyme (he doesn't believe I have anything and wants me to stop

taking all my medications and hormones and let nature take its course) he gives

me a hard time about everything and doesn't want to take me to any doctor. plus

he bitches about the lack of money.

>

> all I know is that ever since WP came into my life (I curse that protocol) I

have NOT been me!!!! now I need to fix the mess but I don't know how and

nothing is making me feel any better. oh, I also take LDN (low dose naltrexone)

for the fibro pains which of course the lyme people say is coming from lyme. so

does this mean that everyone with fibro has lyme disease?

>

> Can anyone give me hope, help and advice. am I the only one who has suffered

by the hand of Suzie?

>

> Please please, I am so desperate. all i think about is ending this misery

because I don't see any light at the end of the dark tunnel. all I think about

is the bad and the what if's and the unknowns. and if what I am doing is

harming. no one is helping me. I feel so lost and scared.

>

> Sorry for this rant, but I didn't know where else to go......

>

> take care and be well,

> Love,

> Nanci

>