Chronic Lyme Disease

[mlzippy7]

Hello
As most of you know I have been very sick for the last couple years and getting worse and worse. The drs can not really figure out most of my symptoms and I research as much as I can(laying in bed). I came across chronic Lyme and asked my primary dr to do testing. They were sure I have MS becasue I have every symptom....any way to make a long story short I am looking for others that have chronic lyme disease and if you have a good LLMD.
Here is a link to the controversy with diagnosing Lymes. I never knew both until I researched it.
Any way take a look if you have time. It is very interesting.
http://www.youtube.com/user/openeyepictures

[leelee88]

Wow that is a pretty powerful message.. It is sad how lyme disease does get thrown under the rug, juts like IC does..

[Jessica12974]

Wow! It is crazy and sad that people have to suffer because of the ignorance of MD`s that do not believe that Lymes exists or still affects the patient long after being treated and even when it no longer shows up in the blood. I have always wondered if all my health issues were caused by a Lyme infection back in 1997. I was a healthy normal happy energetic person who all of a sudden got really fatigued and could not function all of a sudden. Well I found out that I tested positive for Lymes and was treated with a months worth of Penecillin which I threw up everyday. My Dr said "take it even if you throw up!" Well I thought if it is not staying in my system because I cannot keep it down how is it going to work? Well a few years ago I found out that I am allergic to Penicillin. So did the Lymes really ever go away? I will always wonder. Well after being Dx with lymes I started to get chronic bladder infections one after the other. Chronic Fatigue that would last for weeks at a time back then. Now my fatigue is 24/7 and does not go away. The answer to my question of why I was so fatigued back then was that I had Ebstein Barr. It showed it in my blood. They said that I would always be fatigued. I was diagnosed with IC many many years later. A few years ago i was diagnosed with Endometriosis. Just last years was diagnosed with Chronic Fatigue Immune Dysfunction syndrome,Fibromyalgia,PCOS,Mixed Connective Tissue disease,Diabetes Type 2,and Fever of Unknown Origin. And just a few months ago Hypothyroidism. How can a healthy person wind up with all this after being diagnosed with lymes? Can it be late stage Lymes disease? I think so but Md`s do not believe in it. One would have to pay thousands to see a Lymes Literate MD. This is crazy! It is all because of $$$ I was told. Drs were actually prosecuted for treating lymes patients because the insurance does not want to pay for the costly treatment! So they rather tell the patient that Lymes goes away which it does not! Or they lie and say "you are fine!" I was sent to an Infectious Disease Specialist last year when I was at my worst and so so sick and to DX the Fever of Unknown Origin. Well the IDS said "You do not have Lymes,Lymes goes away! Trust me you do not want to have Lymes! You have Pharyngitis!" What an idiot! Pharyngitis is a sore throat! I wish that was my problem! So I am left to suffer with all these diagnoses and in pain everyday not really knowing why I am so sick. My joints are so stiff and painful sometimes it is hard to walk. These fevers are ruining my life! The Synthroid I was put on recently does help but I feel like it is masking the real problem! The brain fog and memory is another major issue! I no longer have faith in or trust the medical system!


DX:
Lymes 1997
IC
Pelvic Floor Dysfunction
Endometriosis
Ebstein Barr
Chronic Fatigue Immune Dysfunction
Mixed Connective Tissue disease
Fibromyalgia
IBS
TMJ
PCOS
Fever of Unknown Origin
Hypothyroidism
Diabetes Type 2

Meds:
Metformin
Synthroid
Ambien 5 mg
Percocet 7.5/325 mg

Have tried for IC: Elmiron,Atarax,NSAIDS,Enablex,Detrol,Lyrica,Neuronitin,Topamax,Flexeri l,Skelaxin,Effexor,Lexapro,Elavil,Ultracet,Ultram,Vicoden,Vicoprofen, Norco, MS Contin,Valium,Klonopin

[mlzippy7]

Jessica
I am so sorry! It is so sad. Have you seen the new film called Under our skin!
Every person should watch it. I had NO IDEA about this before. Yes we hear about Lyme disease a lot but NEVER EVER all this controversy!!

[Eccles]

Hi, I have been housebound with 'fibromyalgia' and 'chronic fatigue syndrome' for 21 years. My bladder is so incredibly painful & the urologist team say there is nothing left they can offer me.

From live blood microscopy, I've just found out that I have had untreated chronic Lyme disease and co-infections all these years. I'm having to pay full price for antibiotic treatment by post as my primary care doctor and local health service will out recognise these findings.

Lyme left untreated forms lesions in the brain and affects the heart.My urologist says it does not affect the bladder, but I know it does. I'm in despair.