Lyme Disease Treatment for BFS?

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Fritillaries

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Occasionally, we see posts from people who have been diagnosed with Lyme disease as the cause of their BFS and have started treatment.

Can any of the people who have been treated for Lyme disease give us an update on whether the Lyme therapy has helped or cured their BFS ?

Thanks !
-dranyab
 
Eric,

I am very interested in knowing more about your experience with this, in fact, if you could share that picture of your blood, or put a name on the technique that the Lab actually used, or give us some contact information for the Lab you used, that would be most helpful.

A blood test is pretty easy to do, it might be worth a shot.

-dranyab
 
I was recently diagnosed with Lyme following ELISA and Western Blot exams. I only had one positive band (23), but it was specific for Lyme disease. They started me on some oral Doxycycline and will get me going on some IV Rocephin here soon. Eric is absolutely correct regarding Lyme. It is very, very, very difficult to find by conventional testing methods (i.e., ELISA, Western blot, PCR, spinal tap). Even if you are lucky enough to have a Lyme specific band show up on the blot, many doctors will not diagnose or treat you unless you have the # of bands established by the CDC for reporting purposes. The CDC cautioned doctors against using the criteria for clinical diagnosis, however, but most doctors still follow the criteria and this may be driven by insurance companies. It does not end there though! If you are diagnosed with Lyme, you will normally be treated in accordance with the IDSA guidelines, which many believe are too conservative for chronic Lyme cases. For example, even if you show neuro symptoms (i.e., twitching, brain fog, neuropathy), some doctors will still start you off on oral ABX when you should be immediately on IV ABX. LLMDs (Lyme Literate Medical Doctors) follow the ILADS guidelines, which are much more aggressive with ABX treatment and for longer periods. The LLMDS will test for the co-infections and treat them individually with different types of ABX. One ABX (Flagyl) penetrates the cyst form of the lyme disease, which is one of the reasons it is so difficult to eradicate from your body. Many insurance companies will deny you treatment based on the IDSA guidelines, but I believe the tide is starting to turn in the ILADS favor. Igenix is a lab in Palo Alto California that tests specifically for TBD (tick borne diseases) including the co-infections. They are highly recommended by those in the Lyme community, and I will probably pay to have them do some complete testing, assuming I am denied by my insurance. I'll keep you posted.
 
No offense, but why should an insurance company have to pay for something that hasn't been proven efficacious? Should we ask them to simply write a blank check for any treatment that a physician wants to try, just because he/she says so? That's what we have clinical trials for, to PROVE that these drugs are effective, and to protect the consumer. If the pharmaceutical companies believed long term ivab for lyme disease to be remotely beneficial, trust me, they would be investing their billions into researching it, and they are NOT. There is much more money to be made in home infusion than your garden-variety oral meds.

If these supposed LLMD's are so certain that this treatment is the answer, why haven't they been able to document it?

Not to mention what this stuff can do to your liver, your kidneys, your immune system, etc. Personally, I'd rather be twitching, or use cat's claw or some safe homeopathic method to combat my symptoms. A LLMD I visited once told me that cat's claw was much more effective than antibiotics anyway.

Finally, it is the overuse of antibiotics which is bringing down the hospital system today, by generating killer micro-organisms that resist conventional antibiotic therapy. Have you heard of VRE? MRSA? CoNS? These are the types of bugs that should be striking fear into our hearts, much moreso than lyme disease.

Blessings,
Sue
 
LisaLM, I get where you are coming from, my thoughts exactly. I have had all kinds of weird things going on with me for the past 6 years. You mentioned about the cat's claw, did you ever try this? I was wondering how much you take. I was on an antibiotic last year after I had a brain MRI because of strange weird sensations on my face, it revealed nothing wrong with the brain, but did have a horrible sinus infection that I didn't know I had. I took 3000mg a day of amoxicillin for 3 weeks, then zithromax for 5 days. I didn't "herx" at all, from what I read people with lyme disease usually herx with antibiotics. I don't know what is wrongs with me, but worry about MS, not **S, like most people, I guess because if it was **S, I would probably be dead by now. Mine all started after a extreme bout of nausea, and just not feeling well, the nausea llingered for 3 months, it was awful. After the nausea went away, then all the other strange stuff started happening. Thanks, Jen
 
I agree with everything LisaLM says, for I always do, even if I haven't read what she said. :D) Further, I will also protect the picture of her cat with my life.

Basso
 

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