Lyme conference Dr H. Dr B. etc - a must read

[justy]

I think it's also important in this whole chronic Lyme/late stage etc debate to remember the vast amount of patients who have NEVER had their Lyme treated and end up like me chronically ill for 20 years or more. I was never even offered a test or had it thought of by any NHS doctor. So I could never have had the chance to have the usual short course of antibiotics to get better.

Patients like me make absolute sense in the MSIDS arena - we have had the disease for so many years, undiagnosed and untreated that our systems have gone haywire and start to shut down. I myself am beginning to experience more and more symtpoms now and more and more systems are going wrong. My immune system is in a mess from having untreated infections for so long, so that other things that healthy people deal with like metals, molds etc start to pose a real threat to my health.

I'm so sick of people going on about people with late stage Lyme are all mad because they will have got better from their initial treatment - what if you have been failed utterly by the medical establishment who never even tested you in the first place - those of us who have never been offered treatment are left to get sicker and sicker. This is my reality.

 

[Dufresne]

very interesting, Im starting to think the reason i have regular cmv reactivation is because of some type of bacterial infection such as lyme. I really seem to fit right into babesia with the sweat attacks, frontal sinus type headaches, they seem to be the babesia symptoms that stick out to me. I always feel better when on abx too, but herx on flagyl quite bad?

Thanks @Dufresne for the video link.

You're welcome, heapsreal. Flagyl can hit so many different pathogens, it's difficult to know what's being killed.

I believe Igenex is a solid lab. As Horowitz suggests, you should use a few tests because only using one really decreases your odds of finding it.

If you're interested in a therapeutic probe for babesia you'll be trying antimalarials. I always noticed a big difference taking RenewLife's Paragone which has wormwood, garlic, etc, and at the very least you might just take out a few other critters.

Cryptolepis is strong against babesia. And obviously if you have access to atovaquone and/or malarone, that should give you an idea.

I think I've read elsewhere that you have a ASD symptoms. This is something I can relate to and babesia treatment helps me in this regard. I don't know if this is specific to babesia in my case or whether babesia is just amplifying the whole Lyme complex, as Horowitz suggests. I just thought I'd mention it in the event you should see any improvement on this front with treatment.

I strongly believe that ME/CFS should be considered a sort of MSIDS, whether one has Lyme or not. Biotoxins, heavy metals, other environmental toxins, genetic issues, etc, all play a part in keeping us ill. There are very good doctors using narrowly targeted therapeutics who are making important discoveries, but they seem to get such a small percentage of patients sustainably well. One has to wonder if Montoya, Chia, and Peterson's patients wouldn't do better on whatever antiviral if they were also employing some of the things Horowitz suggests. Reactivating viruses are indicative of an unhealthy system and this needs to be addressed. The people I've read about who've mostly recovered from ME/CFS and/or MSIDS all used methods such as Horowitz describes and focused on detox. I wish I'd started detoxing with binders years ago.

But it's never too late, even after only a couple months on binders I've gone from a consistent positive to a consistent negative for biotoxins on the online VCS test. I intend to continue with this as I bring in a modified Brewer protocol. I'm also going to do some more metal detox, since this video reminded me that NAC opens up mercury detox, and this might explain why I felt crappy trying the supplement only a month ago. I'm going to do it as he suggests, with DMSA before bed.

Keep trying stuff. It's the only way people get well.

 

[Dufresne]

I think it's also important in this whole chronic Lyme/late stage etc debate to remember the vast amount of patients who have NEVER had their Lyme treated and end up like me chronically ill for 20 years or more. I was never even offered a test or had it thought of by any NHS doctor. So I could never have had the chance to have the usual short course of antibiotics to get better.

Patients like me make absolute sense in the MSIDS arena - we have had the disease for so many years, undiagnosed and untreated that our systems have gone haywire and start to shut down. I myself am beginning to experience more and more symtpoms now and more and more systems are going wrong. My immune system is in a mess from having untreated infections for so long, so that other things that healthy people deal with like metals, molds etc start to pose a real threat to my health.

I'm so sick of people going on about people with late stage Lyme are all mad because they will have got better from their initial treatment - what if you have been failed utterly by the medical establishment who never even tested you in the first place - those of us who have never been offered treatment are left to get sicker and sicker. This is my reality.

F#*king right! I've been sick with this crap since I was a child, not even understanding it as such because I had no reference point of good health to start from. Just ever-increasing challenges. I experienced a clear head for the first time at 32 from treating babesia, though I didn't understand this at the time. I'm now middle-aged and feel I finally have a good idea what's wrong and, perhaps, how to treat it. I see this as the greatest achievement of my life, in spite of a medical establishment that has aligned itself against my kind. I'll be damned if I'm going to sit passively through people trying to obscure the path to health for others, even if it is couched as concerned, scientific scrutiny.

 

[justy]

F#*king right! I've been sick with this crap since I was a child, not even understanding it as such because I had no reference point of good health to start from. Just ever-increasing challenges. I experienced a clear head for the first time at 32 from treating babesia, though I didn't understand this at the time. I'm now middle-aged and feel I finally have a good idea what's wrong and, perhaps, how to treat it. I see this as the greatest achievement of my life, in spite of a medical establishment that has aligned itself against my kind. I'll be damned if I'm going to sit passively through people trying to obscure the path to health for others, even if it is couched as concerned, scientific scrutiny.

Couldn't agree more good luck with your journey. I am only just starting mine and already so many hurdles in my path, but i'm sure we will get somewhere. Wish I could afford to go and stay in the States and see Dr H - he is taking new patients now and looks awesome in his thoroughness.

 

[duncan]

Maybe he will Skype you, justy. I know Enlander will do this, although you have to see him in person the first time I think. Maybe you can email Dr. H and ask.

Also, there are other EXCELLENT LLMDs in that general area of the Hudson Valley in NY. So many that grew with the disease as it spread out from ground zero in Connecticut. Dr. Ken Liegner comes to mind; he is in that area, too. I'd email him as well, if you're at all interested in trying to see if Skype is an option.

 

[Vic]

I'm so sick of people going on about people with late stage Lyme are all mad because they will have got better from their initial treatment - what if you have been failed utterly by the medical establishment who never even tested you in the first place - those of us who have never been offered treatment are left to get sicker and sicker. This is my reality.

It's not that you're mad or you don't have real problems, it's that they're just probably not caused by MSIDS. But I guess this is the "couching as concerned, scientific scrutiny" as @Dufresne says.

Vic, some notes on your observations in the order in which they were made:

a)The general medical community is not well informed about Bb;
b) You state repeatedly LLMDs "believe." It's not a function of what anyone might "believe." All individuals acquainted with Lyme know this to be true, even IDSA members; the issue is the degree to which it holds true post standard treatment, and for many, that is a contrived issue at best. The litmus test is in the patient;
c) The cause for Lyme symptoms is Borrelia. Look it up. It is not a matter of debate. Early Stage or Late Stage or even PTLDS - the cause is Borrelia;
d) Yep, I'd have to agree you need to back this stuff up with something, because right now you certainly aren't sticking to facts or even theory.

b) It is about what LLMDs "believe." They have absolutely no idea how Borrelia causes all of those symptoms and haven't been able to find evidence of it actually existing in sufferers' tissues. Some speculate there is a neurotoxin that inhibits Acetylcholine, but the reason is because one group thought they found a DNA sequencing that could create the toxin, but none have showed Borrelia actually produce it. It's all just speculative.

b) One of the biggest reasons why I think it's nonsense is because of their own diagnostic criteria. This is Horrowitz's:
http://healthspaceclinics.com.au/assets/lyme disease/7. Symptom and Diagnosis List - Horiwitz.pdf

When I answered this as conservatively as I could I scored an 81. The border for Lyme probability is 45! Note that he only allots 5 points for a positive Lyme test. It's probably for several reasons, one being the large amount of false positives Lyme tests can create, depending how they're done. What I experienced was that of all the symptoms I counted points for on his questionnaire, I knew exactly what was causing them, why they came and went, and it wasn't Lyme.

 

[justy]

An awesome presentation by Horowitz from last May. To whoever it was that posted "he is a quack" in one of the other threads... Suck on this.

can you give this it's own thread Dufresne? this is such a great talk and more people would see it if you could do that.

 

[justy]

Hey @Vic considering you odnt know me, or my symptoms i'm not sure how you can say my illness isn't some form of MSIDS. If you are so certain it would be really great if you could point me in the right direction of what I AM suffering from...

 

[justy]

@brenda - I emailed his office some time ago and they don't do SKYPE for new patients. Dr Mart Ross does them, but they are quite expensive. I guess I do have a good Dr, who is very familiar with Dr Horowitz's work, so I should be ggrateful - but there are some issues such as distance of travel to my doctor etc

 

[Vic]

Hey @Vic considering you odnt know me, or my symptoms i'm not sure how you can say my illness isn't some form of MSIDS. If you are so certain it would be really great if you could point me in the right direction of what I AM suffering from...

Can you look in a mirror and describe your shoulders/clavicles for me?

 

[duncan]

Vic, some of the things you write about LLMDs could apply equally to IDSA supporters once you get beyond acute stages, and sometimes even then. For instance, even Steere suspects Borrelia exists in synovial fluid post treatment in many Lyme patients, ie, refractory Lyme arthritis, but he can seldom prove it because it's hard to culture Bb outside of the EM rash. Bb is wickedly difficult to culture outside of acute cases. Same with Syphilis. So when you talk about LLMDs failing at finding Bb in tissues, you are being disingenuous at best. And wrong, since they CAN find evidence of it in antibodies, just not necessarily in accordance to what many consider to be dysfunctional guidelines

What I can't figure out is why you disparage LLMD's when the points that you use to reproach them can just as easily pertain the IDSA members. IDSA members also employ symptom charts.

You are picking sides in a conflict being waged with ignorance by both sides. The science is still being eeked out here. At least LLMD's embrace the reality that the current environment is not satisfactory. They refuse to leave patients exposed and without recourse. They are TRYING.

And Vic, you don't appear to understand the science - that much is clear. You are cherry picking select theories while you denigrate one side of a very active and ongoing debate. That does, imo, a disservice to all the readers.

 

[msf]

No offence Vic, but I wouldn't trust anyone who says that they, themselves have discovered the true nature of a particular illness. I don't think this is how science works anymore, no matter how brilliant an individual researcher is. At the very least the result needs to be replicated.

 

[Vic]

@duncan I base my opinion mostly on what I experience, can predict/replicate, and what the LLMDs themselves say. I only know a little of the reasoning behind the IDSA decision.

Useful experience trumps all, IMO.

 

[duncan]

Evidently not.

 

[minkeygirl]

If there is one thing that everyone here knows is what works for one person does not work for someone else.

Apparently Vic, who fixed his non ME CFS, thinks fixing musculoskeletal issues fixes everything from Lymes to Bell's palsy and everyone else is wrong.

If I feel better after eating rat poo, does that mean my experience trumps all and everyone else should stop seeing their doctors who know nothing and start eating rat poo?

 

[bmoberg337]

You are picking sides in a conflict being waged with ignorance by both sides. The science is still being eeked out here. At least LLMD's embrace the reality that the current environment is not satisfactory. They refuse to leave patients exposed and without recourse. They are TRYING.

.

Couldn't agree with this statement more. There is just as much evidence to support the existence of Chronic Lyme as there is to refute it. And by Chronic Lyme I mean an infection that persists beyond the recommended treatment plan developed by the CDC/IDSA.

@Vic. I appreciate your comments and it's important to have people that are constantly challenging the science we have available to us. Every time I walk into my LLMD's office I am a skeptic and challenge him on everything he does. However, I also remember all the doctors I have seen that offered me nothing in terms of treatment and did very little if any type of root cause analysis. Although I agree with many of statements regarding Horowitz MSIDS complex, I appreciate the fact that he's trying.

It's interesting how people in the IDSA camp are busy refuting evidence produced by ILADS, but never conduct research to get to the bottom of what causes PTLDS and how relief can be brought to patients. One team seems to be defending themselves, while the other seems to be looking for solutions. Which team would you want fighting for you?

Personally, my quality of life is so low that I would rather pursue, in your words, a "sham/dangerous" treatment protocol than sit on the sidelines and comply to the IDSA guidelines. In fact I would gladly risk my life for a treatment that stood a fraction of a percent chance of making me better. People on the outside seem to think the side effects of prolonged antibiotic use is worse than what we are already going through. Yea I wish.

 

[JBB]

@Vic There are many possible causes for CFS / ME type symptoms...Lyme is one of em, I find it strange you can't accept this as a possibility. You may or may not have a valid theory of a subset of patients. Doesn't have anything to do with Lyme disease.

 

[maryb]

very interesting, Im starting to think the reason i have regular cmv reactivation is because of some type of bacterial infection such as lyme. I really seem to fit right into babesia with the sweat attacks, frontal sinus type headaches, they seem to be the babesia symptoms that stick out to me. I always feel better when on abx too, but herx on flagyl quite bad?

Thanks @Dufresne for the video link.

You could well have @heapsreal, without testing its hard to know, we can only go off our symptoms. some of the symptoms that alerted me to Lyme was the sore shins, sore foot soles, eye problems, consistent sore knees, neck and back pain amongst others.

 

[heapsreal]

You could well have @heapsreal, without testing its hard to know, we can only go off our symptoms. some of the symptoms that alerted me to Lyme was the sore shins, sore foot soles, eye problems, consistent sore knees, neck and back pain amongst others.

I have those symptoms u mention too.

 

[minkeygirl]

also @maryb and @heapsreal, the fact that you both and many other's here feel much better after ABX says something.