Seeking Experiences with BFS Diagnosis

[SirTrouserz]

Hi There,

I am a relatively new member/twitcher who has been to the neurologist and diagnosed w/BFS. Actually, he wants me to seek psychological evaluation with the belief that the twitching/numbness/tingling is stress related. I disagree. I am going to see an infectious disease dr. in a few weeks and wanted to know how many others of you have, too. Also:

1. How many of you have been tested for Lymes disease?
2. Have any of you been treated for Lymes disease?

I am beginning to believe, without any medical backround on my part, that many of us may have a undiagosed or an undiagnosable form of Lymes disease. My test came back negatively. I think stress and illness allow the disease, otherwise somewhat controlled by our immune systems, to really take hold for a while increasing our symptoms and then lessen as theour stress decreases or illnesses are resolved. Correlation is not causation. Just becasue stress and illness increase the symptoms doesn't mean they cause them. I have had a somewhat stressful life, but have never had, in my 36 years, a single nerve twitch for days or weeks at a time until now. My neurologist will not help me anymore and I truely believe there is some underlying physical condition causing this.

I quit my somewhat stressful job and my eye stopped twitching, but I still have burning, tingling and the beginnings of arthritis. I think this disease is damaging my body and my regular doctor refuses to treat me with anything because my Lymes disease test was negative.

I am hoping the infectious disease dr. will be of some help, but I'm not terriably optimistic. I think we will have have to pressure the medical community to look a little harder. How did they treat the first people with Lymes disease? Did they send them home and tell them it was all stress and in their heads? I'm angry at the medical community right now and I'm not going to give up until we get to the bottom of this. Twitching is an abnormal condition, benign or not, and someone in the medical profession needs to give us a better explanation.

Sorry to go on like this, but having gone through all the hellish tests, having odd frightening symtoms and having a 'specialist' telling me to go see a psychaitrist, has me extremely frustrated. I live near the woods and can deer from my back door, have all the symtoms of lymes disease and can't get treated. Hoepfully, whatever this is won't damage my body too much by the time I see the infectious disease guy, get more tests done, hope they're acurate and possiably get treated.

If anyone in the Philly area has had the same experiences please let me know.

Thanks for listening and for the support,
Sir_Trouserz

 

[SirTrouserz]

Thanks Mark,

I guess the thing that makes this condition hard for me to comprehend, if it's not Lymes disease or something else, is how stress and illness get transferred into such a severe physical manifestation in such a select few of us. Has a psychiatrist, neurologist, etc., ever given you a logical explanation for that? I wasn't on any medication when this all started, but I am now, anti-anxiety meds. How long has BFS been a disnosis or is it just a catch-all for symptoms the medical community can't explain yet? Have your symptoms worsened over the years or do they fluctuate?

Thanks for any info you can give me. I'll keep you posted on the drs. evaluation- a few weeks from now! Hope all is well with you.

Thanks again,
Sir_Trouserz

 

[johnsoncarter]

Sir_Trouserz:Hi There, I am a relatively new member/twitcher who has been to the neurologist and diagnosed w/BFS.

Carl: I haven'nt been evaluated by a neurologist as of yet but hope that he will give me a diagnosis of BFS! From my perspective although he/she did not provide you with a definitive diagnosis it is better that he/she did not find any major motor neuron disorder! Would'nt you agree?

Sir_Trouserz: Actually, he wants me to seek psychological evaluation with the belief that the twitching/numbness/tingling is stress related. I disagree. I am going to see an infectious disease dr. in a few weeks and wanted to know how many others of you have, too.

Carl: Have you had a comprehensive physical exam and blood chemistry workup by an Internist or Rheumatologist? Did you obtain the results?


Sir_Trouserz: Also:

1. How many of you have been tested for Lymes disease?
2. Have any of you been treated for Lymes disease?

I am beginning to believe, without any medical backround on my part, that many of us may have a undiagosed or an undiagnosable form of Lymes disease.

Carl: Your belief is shared by some but not by many others in the Infectious Disease medical community. If an individual has repeatedly showed no objective test results of Lyme Disease through appropriate testing protocols but manifest a poutpourri of symptoms including some that share characteristics with this disease does not lead to the conclusion that they have an unidentified Lyme Disease infection! In fact, where I lived (which was heavily wooded) a few Infectious Disease Specialists would overload patients with antibiotics (including intraveneously) even though there was no corroborative evidence that they have this condition. When one of my family members was suspected of having this disease an Infectious Disease Specialist pushed antibiotics but when I inquired as to the rationale, she indicated that it was to be used prophylactically! I did'nt accept this response due to the serious potential adverse reactions to long term antibiotic therapy and subsequently had my family member evaluated by an Infectious Disease Specialist who wrote the treatment protocols for the Center for Disease Control. He did not see the need for antibiotics and he was correct because my family member's symptoms remitted spontaneously within a month without any treatment.

Sir_Trouserz: My test came back negatively. I think stress and illness allow the disease, otherwise somewhat controlled by our immune systems, to really take hold for a while increasing our symptoms and then lessen as theour stress decreases or illnesses are resolved. Correlation is not causation. Just becasue stress and illness increase the symptoms doesn't mean they cause them. I have had a somewhat stressful life, but have never had, in my 36 years, a single nerve twitch for days or weeks at a time until now.

Carl: Once again, thank G_D that so far you have tested negative! By the way me and many other board members have our theories as to what contributes to our ambiguous symptoms but we really don't know what the underlying basis is.

Sir_Trouserz: My neurologist will not help me anymore and I truely believe there is some underlying physical condition causing this.

Carl: There may be and I agree that you should seek out a physician who can integrate your symptoms to possibly arrive at a diagnosis. Do you know of a doctor who is open minded, receptive to patients' complaints, caring and has excellent intuitive diagnostic skills (much of medical diagnosis is an art rather than a precise science)?

Sir_Trouserz: I quit my somewhat stressful job and my eye stopped twitching, but I still have burning, tingling and the beginnings of arthritis. I think this disease is damaging my body and my regular doctor refuses to treat me with anything because my Lymes disease test was negative.

Carl: When you say you have "the beginnings of arthritis" is this based on a diagnosis given to you by a doctor or is it your belief that you have arthritis" IF you have arthritis, where is it located?

Sir_Trouserz: I am hoping the infectious disease dr. will be of some help, but I'm not terriably optimistic. I think we will have have to pressure the medical community to look a little harder.

Carl: With all due respect if you are going to approach each doctor with a mind-set that they will not be helpful then unfortunately they will probably not be. It is not a matter of making doctors try harder but of finding a compassionate physician who can work collaboratively with you and hopfully bring a resolution to your medical dilemma!

Sir_Trouserz: How did they treat the first people with Lymes disease? Did they send them home and tell them it was all stress and in their heads? I'm angry at the medical community right now and I'm not going to give up until we get to the bottom of this. Twitching is an abnormal condition, benign or not, and someone in the medical profession needs to give us a better explanation.

Carl: Sir_Trouserz you are not alone in your frustration. I have been experiencing a host of vicious symptoms that have continued unabated for approximately four years without one doctor being able to give me a defintive diagnosis. There are many other posters on this board in similar situations. In the interim I hope that you continue to get good news regarding test results for serious diseases such as ALS. Regards, Carl

 

[LisaQ.]

Hi Sir_Trouserz,
Yes, I went to several infectious disease specialists, a so-called "lyme literate medical doctor," and even a homeopathic lyme specialist. I received all sorts of expensive treatment for the lyme that I did not have, and experienced no symptomatic relief whatsoever.

I spent thousands of dollars, and that didn't even include antibiotics because thankfully my Igenex lyme testing was all negative. My LLMD decided to treat me conservatively using the supplement cat's claw. It was $60/bottle/month, and I hadn't even built up to the recommended dose yet. But I was desperate, and willing to try anything at that point.

I, like others here, would caution you strongly against using any sort of antibiotics unless you test positive for lyme through a reputable lab.

The problem is, even if there IS a post-lyme syndrome, there has never been any documented evidence that treating with long term antibiotics helps it. It is really a stab in the dark, using your liver, kidneys and immune system as research subjects. Not a good idea.

I work in a hospital, and all of the latest rumblings are about super-infections which don't respond to any sort of antibiotic therapy. Any infectious disease specialist will acknowledge that this is due to the overuse of antibiotics, including in undiagnosed lyme disease. It makes me really angry that these LLMD's are putting the rest of the world in jeopardy this way. It is SO irresponsible.

I think one needs to carefully weigh the benefits of getting rid of some unpleasant symptoms or conditions vs. the bringing about of some even worse ones, ie-jaundice, liver failure, kidney failure and subsequent dialysis, or infections that ultimately claim one's life. Not something I'd want to be fooling around with.

Blessings,
Sue

 

[Hydrangeax]

The latest on Lyme research:


In the initial fright stage, I too looked at Lyme as a possible cause of my condition due to all my hiking and such, but wisely held off and did not waste my time and $ on testing as it seems for many to be a wild goose chase. Further, as far as I can recall I never had the telltale bull's-eye rash at the site of any bite and flu-like symptoms. Though over the years I have suffered many a mozzie nip.

Paul