Daisy, Though this issue is an unfortunate fact of life, it sickens me to see this continued denial by all related to the medical community. Is it truly generated by greed? [insurance companies and big pharma] The health advocate/humanitarian in me is dumbfounded. Why the denial of the disease when a patient, such as in the Alberta case, has improved on Lyme treatment?? Try as I might, I just cannot make sense of it. Maybe the powers that be know something that we do not. :(

 

On Wheldon regime [Doxyi [7], Azith, and Flagyli [8]]  for rrmsi [9] since October '05.  Added Amoxicillini [10] 1gm twice daily and LDNi [11] 4.5mg qhs October '07; EDSSi [12] was 6.5, now 5.5.  United States.

___________________________________________________________

Wheldon Protocol for rrmsi [9] since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi [13]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

sorry - double post

___________________________________________________________

Positive Cpni [1] and Bb dx'd November 2006.  Previously dx'd RRMSi [9] May 2000.  Treated by Lyme MD as of 11/06.  Current regimen is tetracycline, Difllucan and Mepron.

This is precisely the attitude that has made my life a (hopefully temporary) ruin.    I was labeled "MSi [14]" because several Elisa tests were negative (of course).  I diagnosed myself with Lyme 6 years later from my own research after treating a UTIi [15] with abxi [16] and discovering on the internet what a "herx" was.

 Lyme dx was confirmed by a smart doc who actually  knows  his stuff.  He also  tested me for Cpni [1].  So here we  are!

********* 

Positive Cpn and Bb dx'd November 2006.  Previously dx'd RRMSi [9] May 2000.  Treated by Lyme MD as of 11/06.  Current regimen is Bactrim DS, Roxithromycin. Rifampim and Tetracycline.  Also NACi [17], probiotics and a few supplementsi [18]. 47 year old mom of two teenagers. Work part-time in  home office with husband/business  partner.  Rhode Island, USA.

___________________________________________________________

Positive Cpni [1] and Bb dx'd November 2006.  Previously dx'd RRMSi [9] May 2000.  Treated by Lyme MD as of 11/06.  Current regimen is tetracycline, Difllucan and Mepron.

Daisy,  It makes me sick to think of all the people sick with Lyme, Cpni [1], Mpn, and all our other favorite chronic pathogens...people who tested negative on this and that scroungy good-for-half-of-nothing test.  The majority of these folks languish and sink into a deep morass of cumulative disabilities due to poor testing and lack of guts and imagination on the part of their doctors.  It makes me wonder how the course of Steve's treatment would have evolved had his ELISA test been positive three years ago.  It's highly likely that if it had been positive, Steve would have ended up in the office of Dr. ASG, supposedly a Lyme (<literate?>) MD in Dallas and would have received inferior treatment.  Chances are, we would have meandered onto the same path we are on now anyway, but that's because we are refusers, rebels, seekers.  Too bad there are so many who, for whatever reason, have not imagined that they can affect the direction of their own treatment. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [19]).  CAPi [3] since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBVi [20], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

___________________________________________________________

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [19]).  CAPi [3] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [20], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

thanks Daisy for this post.

This was on the news from home last night.  I have commented about this problem in Canada before.  The Health Officials simply say the USA test at Igenex so so sensitive it gives false positives.

The fact they are hanging their had on is our test.  Yet they ignore the map of the USA where their cases of Lymes stop at the 49th parallel, our US Canada border.  So I say, what happens when the infected birds, animals, ticks cross over that line?  Are they magically cured!

I count myself as one of the uncounted in that province.  Ticks have been found infected with Lymes in Edmonton, AB.  I wrote a letter about the testing to our Minister of Health & basically it was brushed off.

There are alot of sick people going untreated.  My mom's friend was telling me about this lady who got sick.  Test after test revealed nothing until she went to another doc who had her tested for Lymes in the US & bingo! positive.

I provided the logic before I was tested for Lymes using the Western Blot I had tested positive for a co-infection of Lymes - Babesia.  My US doc said most that test for that would be positive on the Western Blot.

With a health care system that sucks 33-45% of a provinces entire budget, one has to wonder if they really don't want to have a sensitive test.  I went on to explain how much more expensive it is on our system having people in & out of docs offices trying to get an answer as to why they are sick.  I planted the seed, but, basically I was just told that the College Of Physicians & surgeons is very careful before they change, great! but this is a change that needs to happen, it's not like we are trying to sell snake oil!

CFIDSi [22]/ME 25yrs, FMSi [23], IBSi [24], EBVi [20], Cpni [1], (insomnia - melatonini [25], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi [17] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

___________________________________________________________

CFIDSi [22]/ME 32 yrs, FMSi [23], IBSi [24], EBVi [20], CMV, Cpni [1], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [18] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [8]/day-3 days

I was going to comment here about the useless ELISA test that we use in this country and how a negative result has ruined so many lives but then I decided to just point out this discussion we had over a year ago

http://www.cpnhelp.org/the_cpn_cap_community_our [26]

Plus ca change............

 

 

Elinor ..... from England  on CAP, doxyi [7]/roxi/tini  for ME/CFSi [27]/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

___________________________________________________________
Elinor ..... from England  on CAPi [3], doxyi [7]/roxi/tini  for ME/CFSi [27]/lyme borreliosis, positive Cpni [1] and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

KK - In thinking about this

the CDC in Atlanta reports less than 30,000 confirmed lyme infectionsi [21] per year.  The population of the US is 300 million. 

There you have it. 

It doesn't fall on the radar screen of anyone - but the infected. 

Even the CDC says the number is likely at least 10 times what they have as confirmed reported, so maybe 300,000 people in the US.  

Even at 300,000 people - it still would barely make the US healthcare radar screen. 

Pharma companies don't look at lyme and Cpni [1] because there is no real money in it for them.  They are in business to make money for shareholders.  No conspiracy to cover anything up - just no money to be made - so zero interest in testing now generic drugs to treat lyme and Cpn. 

The only reason there isn't a board like this for ulcer patients begging doctors to treat them for H. Pylorii [28] is because a couple of pharma companies got interested.  There was money to be made at the time because they had patent protected antibiotics and there were millions of people with ulcers. 

Pharma companies did some good quality research in reasonably large numbers of real patients.  They proved the science that Barry Marshall, MD claimed, then validated a treatment (with their patented medicines) and then deployed loads of pharma reps to go round to doctors and explain the data and how to treat. 

Insurance companies and Ntl Health's - their goal is and always will be to pay the least possible to care for a large group of people.  They just minimize their legal exposure by following treatment guidelines for each disease.  With lyme - they just follow the guidelines.

So, then why are the guidelines probably wrong? 

Health treatment guidelines in the US at least, are usually very political and heavily influenced by special interest groups (patients, pharma companies, insurance companies) - getting data out - meeting with those who will set the guidelines.  With lyme and Cpn that hasn't been done. 

HIV positive patients are very well organized and very vocal in influencing the outcome of treatment guidelines and insurance companies.

Mentally ill patients are amazingly well organized (well at least their families are) and effect guidelines and insurance companies.

Parents of autistic children are getting more an more organized and are beginning to effect guidelines and insurance companies.

One lady really got things going for endometriosis patients - Mary Lou Ballweg.  What a powerhouse of a women!

For a small patient population disease like lyme - The doctors who usually have time to participate in guideline setting aren't necessarily experienced treaters or the best doctors- they are just doctors who have time to do it and/or have an axe to grind.  

Usually 1 or 2 doctors write the guidelines, present it to the committee and they rubber stamp it. 

Also, since the testing is so poor for both Cpn and Lyme - how are they suppose to write guidelines on where and how to test and on how to diagnose? 

Suppose the guidelines say you should take a careful history and then make a clinical diagnoses based on history and then treat for lyme or cpn infection empirically?  Where's the validated science they would use to say how to empirically diagnose and treat?

Who would then disseminate the guidelines to 100's of thousands of physicians and make sure they understood?  

It seems a daunting challenge.

To me - the only way anything changes is for lyme and cpn patients to organize, fund studies, validated the science and insure they get disseminated to insurers and those setting the guidelines.  Believe me if US insurers thought they could get away with treating MS with a couple of thousand dollars of primarily generic antibiotics vs $20k plus per patient per year for Avonex, Rebif, Copaxone etc... they would be all over it. 

There's just no credible validated science that says use the antibiotics.

No one should expect in the US that the goverment via the NIH (Ntl Health Institute) will solve this.  Citizens would likely cringe if they knew how the NIH really worked.  

Otherwise only a lucky few will stumble in here and begin to question everything...

^{Daisy - Husband on CAPi [3] 5/07.   Roxyi [29], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [7], Azithromycin, Flagyli [8], Minoi [30]}

___________________________________________________________

Daisy - Husband on CAPi [3] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

HERE [31] is a good article on why testing for lyme is so riddled with low testing Sensitivity (false negatives).  Many of these reasons can also explain difficulty in testing for CPNi [1].

^{Daisy - Husband on CAPi [3] 5/07.   Roxyi [29], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [7], Azithromycin, Flagyli [8], Minoi [30]}

___________________________________________________________

Daisy - Husband on CAPi [3] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy,  Thanks for this additional link; sent my mind onto too many tangents.  Connections, connections....Did you notice that Melissa's site has a section titled "Green Iguana Care?"  Melissa probably has Lyme Disease, and it's easy to guess that she has at least one iguana.  I'm connecting this with Sarah's recent thread "Multiple Sclerosis, Iguanas and Wrong Foot" [32] that linked us to an article fingering iguanas as Cpn carriers.  Can't say if Melissa has Cpn, but she' certainly tempting fate if she does keep one or more of those lizards.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [19]).  CAPi [3] since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBVi [20], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity. 

___________________________________________________________

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [19]).  CAPi [3] since August 06, Cpni [1], Mpn, B. burgdorferi, systemic candidiasis, EBVi [20], CMV & other herpes family viral infectionsi [21], elevated heavy metals, gluten+casein sensitivity.