Dr. F says No to Lyme…

[Maz]

[user=2542]Daubs[/user] wrote:

I just went to my regular medical Dr yesterday and he asked me if I wanted to be put on the list for a flu shot. I said “NO” but then he explained the importance of the shot especially with my conditions and then I told him to put me on the list.

Trusting out instincts is the best thing. We know our bodies better than anyone and our instincts are there for a reason. Instincts and gaining knowledge of my own condition is what lead me to AP treatment. My instincts tell that in time AP will make me better. My instincts tell me that I also need treated for Lyme. My AP Dr plans to test me herself and send the results to a lab she trusts in CA. Is that the Igenex lab?

Hi Jim,

I just came across this study on PubMed re: vaccinations and autoimmunity and thought to post it for you:

http://www.ncbi.nlm.nih.gov/pubmed/20193633

There are quite a few studies to the right that you can also click on to follow.

Personally, I prefer to avoid vaccinations these days feeling them to be a further assault on my already compromised immune function. If a person has chosen to take immunosuppressive medications for their rheumatic disease, then vaccination (dead not live vaccines) may be a necessity, but when taking AP, as Brown observed, most patients had a tendency not to come down with colds or flu. I can attest to this, as apart from one bad flu shortly after I became ill with RA/Lyme, I have been cold and flu free for the past several years.

Yes, the lab preferred by ILADs and most folk here is IGeneX in CA.

http://www.IGeneX.com

It's great that your AP doc is knowledgable in Lyme testing. Is she also Lyme Literate? If, when you receive your results, you need a Lyme Literate MD listing for PA, let us know and we'd be happy to send you that list. Lyme treatments vary quite a bit in terms of combinations and doses as compared to low dose AP.

I think most people here would support your decision to listen to your own gut feelings about taking the flu vaccine…some people here take it and others prefer not to. There is no right or wrong, just what feels right to you.

Were you able to catch the PA senate hearings on Lyme? If not, you might enjoy settling back with your feet up and some popcorn to watch this!

http://www.ilads.org/news/lyme_legislation/74.html

Peace, Maz

[NikiG.]

[user=27]Maz[/user] wrote:

[user=2542]I just came across this study on PubMed re: vaccinations and autoimmunity and thought to post it for you:

[/user]http://www.ncbi.nlm.nih.gov/pubmed/20193633

There are quite a few studies to the right that you can also click on to follow.

Peace, Maz

THANK YOU MAZ!!!!!:roll-laugh:

 My mother became CONVINCED 28 years ago that my juvenile rheumatoid arthritis was all started by a measles-mumps-rubella (MMR) vaccination that I recieved when I was one year-old, and she/we have been fighting an up-hill, never-ending battle with the established medical community ever since.  Her insistence that my disease started this way, and her eventual rejection of the standard, toxic rheummy medication that was being given to me at a very young age but that was just making me sicker and sicker, got her labelled as a quack/nut-bar by the doc's.  The doctors even sued my parents for “child endagerment/negligence” and forcibly stuck me in a psyc. ward of the hospital for a supposed “anorexia condition” because I stopped eating certain foods after my mom got me alternative testing and found out that I have food sensitivities that make my condition worse.  [My condition got better, by the way, after I stopped eating those foods and the doc's didn't like that too much b/c their drugs just made me worse, not better].  And all this trouble from them b/c my mom insulted them by daring to go against their “expert, scientific, medical opinion” about how my JRA started in the first place!
And now to see this link talking about possible causal relationships btwn vaccinations and arthritis in black and white in an “expert, scienific, medical” journal. . . this post has truly made my day/week/month/year!!!

THANK YOU MAZ!!!!!:roll-laugh:
You really are a gem!!

Bless you,
NikiG.

P.S. Sorry to have gotten off topic with that post.  Although, to be on topic, I was wondering if I should fork out the cash for the Lyme test as I don't go in outdoors-y tick areas, I don't have/hang around animals, and I don't think I've ever been bitten by a tick. What do you all think?

[nord]

[user=977]mschmidt[/user] wrote:

Nord,

Oh, to be able to master that would be great!:)

Yes, woudn't it? 🙂 It was the main part of the goal of another journey I was on (I let declining health interefere, perhaps this other journey would have prevented the decline, had i persisted). 

All I can say is that getting the negativity out of your life is a good start.  I used to welcome confrontation but, now I run in the other direction.  I try to avoid being around people who stress me out, as well as situations that stress me out.  Yes, finding better ways to manage stress are certainly helpful.  I meditate and run/exercise, to get my mind clear.  Spending time with my friends, and as many nieces and nephews that I can seems to do the trick, too.:D

Maria
 

I agree wholeheartedly, various symptoms have stopped me from running (and the looming risk of making things worse, having heel/Achilles symptoms), but the pleasure from it, the sense of getting a good airing out of the head, make me long back to it. 😀

Replacing not so good relationships with good ones (have long-term benefit), meditation, are likewise good. 🙂

Thank you for sharing, and the postive input, not only here!

[nord]

[user=18]Suzanne[/user] wrote:

[user=2332]reesak[/user] wrote:

Suzanne – I read this report and he says in it that “Zithromax orally is a poor Lyme drug”, but that is what a lot of people on this forum seem to be on for Lyme disease and that is what I will be starting, too. 

 

Just wondering about that….

 

ReesaK

Yes, I wonder about it, too.  I guess it is all trial and error for Lyme like it is for RA?

Personal experience – Zith is the best we have found for my daughter, whether it is JRA or Lyme she has. 

Also on that blog somewhere it says Plaquenil isn't good, either, and I know a lot of Lymies do well on Plaq.   Plaq hasn't helped my daughter's arthritis, but it really helps keep her lowgrade temps at bay.

Is it azithromycin alone or in combo? With hydroxychloroquine/Plaq it may be better than alone: Brorson, Brorson: An in vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorferi to hydroxychloroquine.:

“These observations may be valuable in the treatment of resistant infections caused by B. burgdorferi, and suggest that a combination of HCQ and a macrolide antibiotic could eradicate both cystic and mobile forms of B. burgdorferi.”

Other combinations may be even more effective. Same authors:
http://www.ncbi.nlm.nih.gov/pubmed/16501899
http://www.ncbi.nlm.nih.gov/pubmed/15248163
http://www.ncbi.nlm.nih.gov/pubmed/10379684

It looks like the search is on.

Starting slowly with one drug and increasing (and adding) slowly is probably a good idea, with herxing/die-off etc in mind.

[Maz]

[user=2031]nord[/user] wrote:

Is it azithromycin alone or in combo? With hydroxychloroquine/Plaq it may be better than alone: Brorson, Brorson: An in vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorferi to hydroxychloroquine.:

“These observations may be valuable in the treatment of resistant infections caused by B. burgdorferi, and suggest that a combination of HCQ and a macrolide antibiotic could eradicate both cystic and mobile forms of B. burgdorferi.”

 

Hi Nord,

Yup, think the search is still be on…since Brorson's finds re: hydroxycholoquinine and the cystic forms of Lyme, Eva Sapi has done further research that seems to contradict him in this particular scenario (from the same LymeNet link Lynnie was unable to open).

An in vitro evaluation of antibiotic susceptibility of different morphological forms of Borrelia burgdorferi

http://www.lymeneteurope.org/forum/viewtopic.php?f=5&t=2776

“Our study suggested that exposure of Borrelia burgdorferi cultures to concentrations greater than minimum bactericidal concentration (MBC) of doxycycline (>25

[nord]

Thank you Maz!

Yes I noticed the articles by Dr S, and thought that I should get the full texts. The Brorsons wrote that article in 2002, so it is old. The second of the three I linked to on pubmed deals with Tinidazole, and points out that it is good in combo with macrolides. http://www.ncbi.nlm.nih.gov/pubmed/15248163

Dr S clearly has a good background (academically and personally) for this.

Also cites one of my favourite chinese proverbs at her www-site haven't seen it in English before):
[align=left][font=”Lucida Calligraphy, Lucida Handwriting, French Script MT, Freestyle Script”] “Teach me – I'll forget
[/font][font=”Lucida Calligraphy, Lucida Handwriting, French Script MT, Freestyle Script”]Show me – I may remember
Involve me – I'll understand” [/font]
[font=”Lucida Calligraphy, Lucida Handwriting, French Script MT, Freestyle Script”]– Chinese Proverb[/font]
[/align]Thank you for sharing 🙂

Clindamycin may reach CSF better (does not cross healthy BBB :?, says one source) than Azithromycin, similar for Roxithromycin. These (in that order) have replaced Azi as the macrolide for Cpn in Both Dr Wheldon and Dr Stratton/Vanderbilt for the same reason. Same for Mino instead of Doxy, re tetras.

Doxy is not as active against Borrelia as Azithromycin according to this (of course concentratons in vivo must be considered, but seems not that different):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC153919/table/t1/

So that is one combo that could be useful Mino+Clin/Roxi+Tini? If no tendon involvement or resolved, perhaps gemifloxacin instead of macro for some even better CSF conc?

[Daubs]

It's great that your AP doc is knowledgable in Lyme testing. Is she also Lyme Literate? If, when you receive your results, you need a Lyme Literate MD listing for PA, let us know and we'd be happy to send you that list. Lyme treatments vary quite a bit in terms of combinations and doses as compared to low dose AP.

Maz,

Thank You.

I would be glad to get that list.

Jim

[Maz]

[user=2542]Daubs[/user] wrote:

I would be glad to get that list.

 

Hi Jim,

Will send the PA LLMD list in a PM (private message). Just click top right where it will say, “You have 1 new message,” to retrieve it. 🙂

Peace, Maz

[Joanne60]

Rather late to reply I am afraid but I think you need to read far more about what is going on with the controversy about Lyme Disease before accepting anything an ID doctor says over a LLMD.

As to your remarks about Igenex and postives not so indeed. My LLMD gets as many negatives as positives.

 

In my own case I was negative NHS and Igenex but thankfully both my GP and LLMD agreed that clinically I could have lyme and as I responded to long term antibiotics I was treated. Thank god for that I am nearly 100% recovered although for 3 1/2 years I had been unable to walk up or down stairs properly and was retired early on ill health grounds.

There are many people now being diagnosed with Lyme at my surgery both at the tick bite EM stage and at the chronic stage.

Don't dismiss lyme as a differential diagnosis too readily without first doing your own research and discussing with a doctor that has treated thousands of cases not just dismissed chronic lyme as a figment of a patients imagination.

[Author]

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