I am posting just to tell you guys what somebody at the local center for infectious disease told me (I called to get seen or a referral or just some advice). It seems that she KNEW that cases of Lyme were "so rare as to be almost nonexistant" in the state of California and therefore the docs were unlikely to want to see me. Am I nuts? This doesn't jibe with what I learned on the BB. Anyway, they suggested I direct my questions (breastfeeding, length and type of antibiotics) to some nearby pharmacy. Thanks! I said.

Just venting. :-P
 

It is a relatively new sign, so it may be a recent discovery that the person at the center for infectious disease is not yet aware of (though she should be).

[This message has been edited by felinitie (edited 22 June 2005).]
 

In the meantime, here is an article about that very thing http://www.anapsid.org/lyme/calyme.html

If you go to www.lymedisease.org that's the california lyme disease association (CALDA) web site.

Our support group, Santa Cruz lyme group, made a poster showing tick density and infected tick ratios in parts of the county. It was mind blowing.
There is more info about lyme in CA than you want to know.

Another thing is that if you travel at all, where you got it becomes a moot point. I may have picked mine up in Europe!! It's all over the world!! There are at least 12 seperate strains of Borrelia that are known, and many subspecies and strains that are being discovered. European researchers are coming out with new data all the time. Its a problem everywhere. And that's just lyme disease, when you throw in all the other tick borne diseases, well.......

[This message has been edited by pippy (edited 22 June 2005).]
 

Second...When I was naive and seeking treatment I was told by the Palo Alto Medical Foundation Infectious Disease chief as well as the ID chief at Stanford that there is no such thing as lyme in CA, that I must be in need of psychiatric help.

I told the Stanford fellow that my peer review group would be sorely embarassed at missing my frank psychosis...

The Palo Alto Medical Foundation guy was just smug as heck...I was in tears after his visit...His nurse followed me to the parking lot to say that I really did have lyme (yes, the bloodwork had revealed that), that the PAMF would not treat lyme agressively as the HMO's and PPO's would limit reimbursements and limit bonuses by the month...

Surprise surprise....We have little oversight for insurers in this state. The state Insurance Commission really has no teeth when regulating insurers, so they do what they want to do, and the patients pay the real price.

We have to rely on lone practitioners who are brave and dedicated enough to follow their conscience and dedication to real medicine.

We have Dr. S in San Francisco, but his practice is closed to new patients...That leaves three in the state that I know of. Email that nice lady above for doctor information. She's a swell gal...The Santa Cruz lyme support group is a great group of lymies too!
 

I had a KNOWN tick bite with a rash, full blown symptoms, and an MRI report in my hand that said "multiple brain lesions CONSISTENT WITH SEQUELLAE OF LYME DISEASE."

My idiot duck brainless neurologist continued to flip pages in my chart, ignore me, and order tests for MS. Refused to send my blood to Igenex.

Lucky for me, I came here and these fine folks gave me a steer to Dr. J in Chico, only a mere hour and a half away. Otherwise, I have no idea what I would do. Maybe I could find and educate one of my nice GP docs, but the specialty docs are hopelessly ignorant. It's pitiful. I cringe when I see that my insurance company even paid the idiots.

Michelle M.

[This message has been edited by Michelle M (edited 22 June 2005).]

[This message has been edited by Michelle M (edited 22 June 2005).]
 

Don't expend too much energy but I did take time to write letters to all the doctors who failed to diagnose me. Since your purpose is to educate keep the letter informative and respectful.

 

Good luck and let us know how it goes!
-pippy
 

Two days after camping I woke up and couldn't move my neck...felt like I had the flu in July.

Today I went to see my regular doc who is alternative and she couldn't believe I got infected in CA.

Every state has lyme even Colorado sorry to say. My friends mom from Montana got bitten by a tick in the Rocky Mountains five years ago.

quote:

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Originally posted by breathwork:
Second...When I was naive and seeking treatment I was told by the Palo Alto Medical Foundation Infectious Disease chief as well as the ID chief at Stanford that there is no such thing as lyme in CA, that I must be in need of psychiatric help.

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The ob/gyn department as a whole told me that my endometriosis was really a psychiatric problem. I filled a complaint with the state but I don't think it did any good.

Eventually I got a doctor that believed me, and one of the doctors from PAMF was operating in the next room, and my doctor dragged him in yelled at him and pointed out the stage 4 endo (as bad as it gets) and the guy still denied there was anything wrong with me.

I found that the doctors, all of them and I went to many, at PAMF were basically imcompetant.

 

Here is the scope on ID's and non-endemic region lyme diagnosis... based on what I can find.

I have been trying to figure out why ID's are so resistant to diagnosing Lyme.

Basically it is DRILLED into their head in every ID related publication that LYME testing should only be done if there is a "reasonable" PROBABILITY of the patient being exposed. Further to this it is also drilled into their head that if the patiet comes in with a self diagnosis of LYME that it is a result of pandemic pananoia. The key proponent of this is a fellow named Dr S., a pediatrician. He has written many short papers on the over prevalence of Lyme diagnosis vs confirmable disease.

There is a technical basis for this position, It is not out the blue. Basicallt it has to do with the non specificty figures for Lyme testing (or any testing for that matter). If you test many many people that do not have the disease you will get some false positives, either through cross reaction or bad lab technque. So in order to minimize the false positives one must only do tests n people that are more likely to have the disease. The symtms are so non-specific in most cases (if the rash or demonstrateable migrating joint inflamation is not present) that they are rejected as being any type of indicator or lyme being probable.

Despite this recommended approach, the problem is that just becasue Lyme has a low probability of occuring in a particular region does not mean that it should be ruled out of the differential. Often it is never even considered, particularly so if the patient suggests it on first visit.

Another problem is that even if a particular ID does recognize it, becasue of the stuff that is drilled in to the heads of his/her peers, they will want to be ultra sure of the diagnosis. That means getting the blood results from a lab of THEIR choosing. You can be pretty sure that Igenex is not one of them due to the comments being made by both the CDC and many "lyme is not a big problem" advocates. I fear that the only way for Igenex to overcome this is through aggressive legal action to make those people who make comments to the effect that Igenex is a "positive result lab" accountable, win a notworth settlement and then blast the results to every ID journal on the planet (of course taking out advertisements at the same time in each of these publications to get the publishers to accept the "news release".)

To put things in perspective if one is confronted with a "lyme is so rare to be non-existant.." from someone. There are diseases like CJD which occur natuarally in the population at a rate of about 1 person for every 2.5 million population. Even with these odds, CJD is very often considered in the differential diagnosis for unexplainalbe neuroligical disease. So why not Lyme? This is a good questio to ask...

It comes down to what signals the main stream publications are sending... it is very negative on Lyme, particularly the "self diagnosed" kind.

So based on this here are a few rules that one should remember. I am not saying that I agree with these, it is just that the ID will follow these rules when it comes to Lyme and if you know what is going on then you can deal with it.

Based on the "teachings" provided to infectious disease Dr's they should "ALWAYS" reject any patient that has self diagnosed with Lyme. Patients in this catagory either are exageratating their symptoms or have a physcological disorder.

If you are a ID and feel that the patient has Lyme, you have to be ultra sure that this diagnosis is correct. If you have super strong evidence then treat based on the 3 to 4 week guideline and then discahrge the patient immediately since this is no treatable post Lyme disease. Also get rid of the patient since it wil take several months for them to fully recover anyway.

Once you have the first positive IGg Western blot, follow up ones are of no use as the IGg by conventional thinking will remain positive for life. If you get recuring IGm positives then this is just further proof that the lab gives false positives.

It is possible to make a positive diagnosis of Lyme on a Clinical basis but you better be sure that everybody and their cat has detected AND DOCUMENTED some unspecified disease in the the patient before you see them. Even so never treat for longer than the recommendations (4 weeks) unless there is a clear cut relapse ( which in all cases a single of "post Lyme inflamatory disease"

So the bottom line as far as I can see is that you may be lucking to get a ID to do the initial treatment but after that you have to find a specilist in Lyme if you relapse.. The rules that they follow ALL have sme scientific basis so it hard to argue, even with scientific evidence to the contrary.

At some point some ID's will finally recognize that Lyme and Lyme related diseases are a ligitimate "growth opertunity" and start treating using some of the more recent scientific information as the basis.... the hell with the peers. Until that critical mass occurs (and I am sure it will) it looks like the situation will continue as is .

Sorry, but that is the world as it stands today- at least the way I see it.