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Lyme

Marty Ross

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Marty Ross Lyme Protocols

Why – if you have Lyme, babesia, or Bartonella, you should be reading Marty Ross’s protocols.

Bartonella Treatment in Lyme Disease—A Lot Has Changed

The latest laboratory experiments suggest effective Bartonella treatments must do more than kill growing germ forms—they should also kill hibernating persister forms of Bartonella and include agents to remove biofilms and fibrin nests.

Head on over to Marty’s website (TreatLyme) to listen to, or read about, how to recover your health, you will find treatment plans including dosing and combinations. Kill Bartonella a brief guide

I was so intrigued, I purchased his book Marty Ross Hacking Lyme Disease available on Amazon (affiliate link). This following is the write-up from Amazon.

The good news is—you can recover from Lyme disease and related infections like Bartonella and Babesia.

In Hacking Lyme Disease: An Action Guide to Wellness renowned expert Marty Ross, MD shows you the way. This book is a compendium of key articles from Treat Lyme by Marty Ross MD (treatlyme.net).

YOU WILL FIND
• step-by-step action plans for the best herbal and prescription germ killers for each kind of infection found in Lyme disease;
• key steps to take if your previous treatments failed;
• the best approaches for treating bacterial Lyme and Bartonella persisters based on the latest research;
• the full Ross Lyme Support Protocol for dealing with all aspects of chronic Lyme disease;
• the latest information on oral peptide therapies to repair damage;
• a critical review of many alternative medicine treatments like SOT, Rife machines, hyperthermia, and more;
• key treatments for many Lyme related conditions like mold toxicity and mast cell activation syndrome; and
• a science-based review of actions you need to take for the best chance of recovery.

Marty Ross, MD is a passionate Lyme disease educator and integrative medicine clinical expert. He helps Lyme sufferers, and their physicians see what really works based on his review of the science and extensive real-world experience. As the host of Conversations with Marty Ross MD, a free weekly Lyme Q & A webinar, Dr. Ross knows the questions people ask. Based on nearly 20 years successfully treating chronic Lyme disease, Dr. Ross knows what works

Life after treating Lyme

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What’s life like after treating Lyme?

January marks month 7 on Laser Lyme protocol.

Where are we now? It’s been an interesting few months, new moons, full moons, Christmas, Halloween, New Years, quite the plethora of reasons to expect hyperactivity, tiredness, and general backsliding. To keep that in check, we still remain true to our NELL protocol, but with the kids back in school, hubs back to work and my commitment to campaigning for legislative changes here in the state, it could easily slip away from us.

That aside, where are we now? Are there regrets over that long summer in the camper in NE? Have we seen any further progress? How are we maintaining?

Well in true and typical fashion nothing is very easy or predictable but we are still sitting around 80 & 85% – we haven’t made any real progress forward in the last few months really but the good news is – we haven’t gone backward. That alone is worth celebrating. We have continued to follow NE Lyme Laser protocol because it is working for us (although we don’t do the exercise and oxygen every day, or the footbath every week, and we have also not been to a chiropractor since we got back), but we do take the drops religiously every day, 3 times a day to keep the Lyme at bay. We have also chosen to work with a nutritionist (Real Food Rebel) to try to address some other areas we know we have challenges in. We completed hair testing and in light of that Brenda at Real Food Rebel has determined a targeted supplement regimen for us. Now we follow a program for healing their digestion challenges. My kids continue to do “ok-ish” on both of these programs combined. The rashes are going or gone, skin is becoming clearer and overall the kids are functioning at home and at school, which is helpful for us all. One little bump in the road is that we are having to remove the amantadine that proved so beneficial in the beginning. If you read back through old posts, after much trial and error (actually 15 different trial and errors) our doctor had prescribed amantadine – just to try and affect some positive change in impulse control. Starting amantadine is what we now refer to as a turning point for our family. Initially, we didn’t see much progress on just 100 mg once a day but once we went to the twice-daily dosing schedule, we started to see big changes. Later a tonsillectomy and adenoidectomy proved equally as beneficial and finally, we got to a point of stability which then enabled a return to school – so life changed drastically from those two interventions for sure. Anyway, around October or November last year an intermittent arm/hand tremor started to became an everyday occurrence and it was decided the time had come to remove this NMDA antagonist/antiviral/ dopamine agonist drug. Tremors can be a side effect of this medication. Never the less, it is bittersweet (it helped so much but no one wants their kiddos on long-term pharmaceuticals) to let it go because we had seen that huge progress using the Amantadine (rationale for use).  It can also be tough to take this particular medication away so we are titrating down very slowly. We know that irritability, depression and suicidal ideation can be an issue with amantadine (both on it and coming off), so we are being cognizant that we might see positives and negatives in those areas before we are completely done.

As a parent, navigating all this information is overwhelming sometimes, I had heard the terms “NMDA antagonist” and “dopamine agonist” before all this started but it wasn’t my go-to in any conversation and I probably couldn’t have used either in a sentence. It was never anything I thought I would need to know, but now these terms and definitions are added to the ever-growing medical vocabulary tucked inside my memory banks. I feel like these definitions must be firmly solidified in my head because, during conversations with medical providers, we need to be semi-knowledgeable enough to agree with treatment plans which sometimes have to happen on the fly.

So what’s next?

MOLD

It turns out that life after (or with) LYME often centers around mold, and this is now the new rabbit hole we have decided to chase down. I am exhausted and would really prefer to snuggle under my duvet and ignore any more LYME, PANS, Mold or infectious disease processes, seriously I really don’t know whether to laugh or cry at the thought of starting a new project all over again. My house has been tested 3 times in the past year, and we have high levels of Aspergillus penicillioides amongst other fun stuff. We only found this out after much convincing to test from friends who all agreed more had to be going on. I really didn’t believe there was mold in my house because A: We have no active leaks and B: We had completely renovated the house 5 years ago when we moved in. I was positive there was no mold, but to stop the questions, I ordered an ERMI test from Mycometrics . No one was more shocked when the results came back really high and Aspergillus was the worst.

We set to cleaning every room with a combination of water and Everclear, we also threw away hundreds and hundreds of items that might have been contaminated by mold. We painted rooms with low VOC, mold resistant paint, and we even purchased an HI TECH machine along with 2 very large unattractive Dri Eaz air scrubbers, but the mold still remains somewhere in this house. Sure, our ERMI scores have gone down significantly but not yet low enough to be considered “acceptable” to live in for someone with a Chronic Inflammatory Response Syndrome (CIRS), which we seemingly have. So – as exhausting as it is – we plan on using a different company (Conflict Free Mold), to take new samples. This will mean I can afford to do every room individually. Prior testing was one sample from multiple rooms combined on the same cloth, we did it this way simply due to cost. Unfortunately, this means that while I know I have mold and what type, I have no idea at all where the mold is concentrated or where it has spread in the house. So, pith helmet on, flashlight in hand, crawlspace here we come… not really, I will purchase a kit, and send off 10 samples (one from each room) and see if we can finally pinpoint where our problem area or areas are.

This journey was never going to come down to just one thing I suppose. It’s been caused by many things stacking against us for a long time. Lyme may be one of our triggers but the post-infectious autoimmune encephalopathy we are struggling with now, is the end result of many, many, many things, or at least it is for our family. This may help explain further – Moleculara.  The longer this goes on, the more we find out, the harder we must work to resolve it. We want what everyone else wants – our kids to be as healthy and happy as possible in this life. Mold is toxic, gene SNPS create issues, bacteria, viruses, unhealthy diets, allergens and environmental toxins aggravate an already stressed immune system but we still want the best for them. So, for now, all we can say is:

“Mold!! – Challenge accepted.”

 

Lyme Laser – Day 86

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 Lyme Laser Treatment – Day 86

Maintaining at home

Ideally, we would have only just been returning home from NE. This is a 12-week program but as previously mentioned, we were forced to return home a full 1.5 weeks earlier than we should have. Initially, we figured missing those couple of weeks wasn’t a big deal but it has definitely interrupted the flow of diet and supplement schedules. So yes, now I am wishing we stayed for the duration but as that wasn’t possible, here we are.

A few things have happened since we got home, one kiddo is still battling chronic nausea that began around week 8 while in NE, the other still has an infection on the forehead that was there when we arrived. Both kids have returned to school and that’s where we knew we would either confirm true progress or we would crash and burn. So for ease, I will break this down into two parts: Physical and then social – because realistically we struggle with both but they are separate challenges for us.

Physically both are doing pretty great (not perfect, but pretty great). Joint pain is mostly gone, for sure neither kid has woken up with “growing pains” since we returned, no more random weird muscle pain in their upper arms and no more strange shooting pains up their legs or in their toes, and of course, the foot pain I have mentioned before – still has not returned.

Headaches: These really only affected one kid but they too seemingly are gone. We are still struggling with braces (orthodontics) pain in teeth and gums but the TMJ-type pain along with the headaches thankfully no longer seems to be an issue.

Nausea: As I mentioned, one is still struggling a lot with nausea first thing in the morning, sometimes it’s really bad but regardless it tends to pass about an hour after the alarm goes off. Truthfully it is a little disturbing and we have been addressing it with our PCP since returning home (adding in small carbohydrate bursts, little piece of fruit, no water on an empty stomach, adjusting supplement schedules, small snacks before bed, different probiotics, activated charcoal, famotidine, etc) but it remains the same and I am now leery that it has something to do with the braces situation. Have to research that some more.

Stamina: This is an ongoing issue, PACER testing at school keeps triggering asthma attacks. However, the change here is that there is a desire to be fitter, which is a massive change in attitude. Realistically it will take time to get into a routine that involves physical exercise over computer gaming but we have the desire, so that’s a step in the right direction. We did order an oscillator so we can add that to our routine at home.

Skin eruptions: Both have ongoing weird skin issues. One has an almost fungal looking patch on the head, which is being addressed by a dermatologist and the other has dark patches on the forearm that honestly I just thought was dirt when it showed up initially. The patches are not raised or painful but the skin has a dirty gray discoloration to it. It is more visible later in the day and encompasses a large-ish part of the forearm, we had seen something similar early on in treatment on the neck area but that section is completely gone now. I am just assuming that this is due to some weird detox reaction.

Bartonella Rash: Seems to have stayed status quo now for the duration, it is definitely less than when we started but at some point stopped fading and is still visible especially for one kiddo.

Social: School is going superbly well. Both were happy to get back to their friends. Luckily the last two years have been favorable for that. Friends were scarce in the beginning, especially for B because the behavior was so erratic and extreme, but last year that began to turn around. They both now have a couple of really good friends and having a group to hang with at school, always helps the day go better. They both also report that their memory is improving which makes classroom work much easier. Even as late as May this year, B could only follow the first one or two sentences his teacher would say, after that his auditory processing became an issue in addition to the memory challenges and he was lost pretty fast in every class he went into. Both seem to be having an easier time understanding what is being said by the teacher without having to follow up or get extra notes afterward, this is an exciting piece of our puzzle. Processing instructions given verbally for assignments and/or tasks have been a significant problem in the past and caused many upsetting returns home from school. This seems to be resolving little by little as we continue on. I am also ecstatic to report that behavior in school has been great and we are managing to get to school on time which is huge. We had many, many tardies last year and one of our big goals this year was just to get to school on time. Now that sleep is becoming a regular thing, getting up on time is of course much easier and thinking about it logically, this probably helps the memory challenges just as much as working to reduce inflammation and killing Lyme has done. Chicken or the egg…

Homework is still not being completed by B (I just keep saying “breathe, lady, breathe – Rome was not built in a day…”) this is a big struggle because mentioning anything remotely homework related can cause a meltdown of epic proportions. This is where we see the most sparks of prior behaviors. Conversely, A has consistently been an attentive student even in the worst of times, A would cry and struggle and try super hard to keep up even during our homeschool periods. Homework has always been important and completed on time so again status quo reported here, nothing has changed for either of them in this regard.

Diet – Both are now allowed a wide variety of fruits and veggies and even 1 or 2 carbon sugars (honey, maple syrup). Both are taking lunch every day and B is pretty rigid about sticking to the diet, he apparently likes feeling so much better although the “anorexia” part of his OCD has always been a little discouraging. Anyway, he really is eating, eating well and eating in front of us so we know it is not an issue, we tell ourselves his pride in how his body has changed is kinda normal but still, this is a little anxiety driving for us. We have struggled with body image, choking feelings and food refusal several times for both of them and we don’t want that to become a recurring issue. However, they have finally started to grasp the “calorie matching” principle we were told to stick to and so we are just going to proceed with caution on this part of the program. Truthfully, A is struggling a little harder in this area. The desire to eat pancakes instead of protein in the morning is overwhelming and probably relatable to the nausea feeling. We did find a respectable almond flour pancake mix which is also Paleo, no sugar or soy and relatively high in protein. That seems to be a decent starter for the day and is working out well so far. We also found KNOW Foods, which is a huge bonus for the times when I am just too exhausted to cook and be creative or they are craving something cakey.

When we started on this journey a thousand years ago, we didn’t initially know when or how we would get our child (and later our children) back, we didn’t even know what was wrong or where to focus, but we knew we had to bring our kiddo(s) back someway, somehow. When the other one got sick, the panic became even more real. How does one envision supporting two adult children (who are struggling to function) long term, especially at our ages (less than 10 years to retirement) – it becomes very scary to think more than a few days ahead believe me and our conversations became more frantic as the years went by without real healing or relief. Yesterday, was our quarterly psychiatry follow-up appointment. This physician has been on the journey with us for over 4 years now. When we first started meeting with him, we all agreed, B struggled with memory, self-esteem, depression, struggled to stay on topic or focus on general conversations. Most conversations would jump randomly from topic to topic in no particular order. Everyone we had sought out told us B was very complicated and/or complex and many didn’t even know where to begin to try to help us resolve these challenges. Our psychiatrist has been an active participant of our long term support system, despite the fact that we either failed (and sometimes refused) many pharmaceutical or natural supplements, he has never given up making suggestions, talking us through and brainstorming different options. Yesterday, he was so happy to report to me at the end of the session that B’s mood is reportedly “great.” Yes, the kiddo who was been depressed for over 5 years is now reporting feeling “happy” and “ok about stuff.” He is coping well and actually using the strategies learned from years and years of CBT with both the psychiatrist and therapist. These people have been instrumental in helping him reframe the negative thoughts he has always had. However, prior to treating Lyme, rational thought processes or calming techniques were just not accessible to a child, in that moment, who had a brain on the boil.

So on that note, technically we are done, although of course we really aren’t, we are just done the core part of the program.

We will now stay on maintenance for however long it takes to get to 100%. As of today, nothing much changes until next week, then we take a few days break from one of our key supplements – not gonna lie, little terrified about that one but Dr. Wine has assured us it is a very valid next step in the program. So until the next update, wish us continued success and we will see where this takes us… If you are interested in learning from the clinic, contact them at Lyme Laser Centers of New England. However, I will say this, after many years of jumping down one rabbit hole to another (thanks mainly to information like this found on the internet at 2 am), I would caution you to do your own due diligence. Are we 100% well? No. We are only probably around 70-80% better than we were 6 months ago. Both kids still struggle emotionally, both still meltdown and rage randomly but certainly not the chaos it was before. Was this magic? No. There is no magic pill, not one that I have discovered anyway. Was this hard to pull off? Yes. We had to live away from home for nearly 3 months and commit to a program we had no idea would work. Is the diet part tough to maintain? Yes but as time goes on it becomes easier and easier. Does diet even help Lyme? I don’t know, I am not a doctor, it certainly helps us. Gut brain connections are being studied more and more, and so we felt it was an important part of any program, other people don’t. You have to choose. This has helped us get to probably about 80% healthy, this has helped us reduce rages (not eliminate, just reduce) and improve memory, this has helped them both feel mentally and physically better but conversely, there are a thousand different other things we tried that were amazing for others but didn’t help us at all, or it only helped a bit, or the gains didn’t stick, or the cost was prohibitive. So again I would caution you to do your own due diligence. I try really hard to not get caught up in the moment and I try to be realistic about where we are. I would never assume this is it for us, this is all we need because the reality is so many times recovery has been tenuous and treatments that have started successfully, ended up fizzling out. I would never suggest anyone do what we did because again, we are not where we need to be yet and even if we were, this may not be the answer for you anyway. We still also take additional supplements to those that were suggested a LLCNE. You have to read as much as you can (PubMed is a wealth of information), you have to talk to people, and only you can decide what’s next for you. But I can say, this is what’s working for us, right now, today and if I had to do it over again, I would. In fact, I am plotting and scheming how I can get myself through the program because the relief they got, I want for me too. 😀

Happy labor day everyone.

You can reach me at dancingbonfires@gmail.com if you have specific questions otherwise, until next week.

Returning home from Lyme Laser Treatment Centers of New England

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Returning home from Lyme Laser Treatment Centers of New England

Day 75

We have been home now for 5 days and I can honestly say the adjustment was slightly chaotic. We haven’t really unpacked yet but supplements still must be given on time, as per our previous schedule. It definitely has taken more than a couple of days to get back to a routine, now it’s Saturday and we finally executed our schedule perfectly. I have managed to source some of the pieces of the program that we would like to continue at home, so while we are technically finished at the clinic, we will maintain the supplements, footbaths, exercise and diet schedule for many months going forward. We, of course, brought a large bag of supplements back home with us, but they have been reduced now we are in maintenance mode.

Overall, the progress continues. Both kids are adamant they are happy they did the program, annoyed at missing summer with their friends but feeling about 70% better than they did when we left.  I am a little nervous because if we were in MA still, we would not be in maintenance for another week or two. I am praying it doesn’t set us back because we left early. Dr. Wine is confident in our recovery from here as long as we maintain the program, but I have had so many false starts during our journey, I am always just really nervous about going backward.

So week 11, now behind us, heading into week 12. Really nothing drastic to report, just more of that steady climb upwards to feeling healthier. If you ask my kids, “do you think it was worth it?” they now reply with a resounding “YES!!” which makes it so worth the sacrifices we all made to get there. They are definitely feeling better each and every day. One still has frustration and is still experiencing some obtrusive/obsessive thoughts, the other is feeling nauseous on and off, which has been an ongoing issue. We think it is related to candida and food intake. We will hope that as that resolves (Dr. Wine’s protocol addresses that), nausea starts to remit as well.

Anyway, first two days back to school went phenomenally well for both. The one with memory issues was happily surprised to find that everything stuck during the first days of classes, this was one of our greatest hopes going up for treatment. The memory issue in conjunction with poor processing has been a great source of frustration, so having both issues improve is very exciting.

So all in all, a really great week. Again, both feeling better each day, maintaining gains and happy to be back in a routine. For sure, both are ready to have some fun at the amusement park tomorrow, it will be interesting to see how they enjoy that with all their extra energy and motivation. Roll on week 12…

New England Day 61

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New England Day 61, Lyme Laser Treatment

I am updating a little faster than is typical for my crazy hectic schedule simply because we finally have good things to report. Yesterday, on day 60 –  B told me, “I am so happy with how much progress I have made since I have been here, I can’t tell you why I feel better, I just remember that this is not how I used to feel!” Add to that, his long term memory is coming back, sleep is coming easily and I think we may have finally started the shift we have been hoping and praying for or at least we are heading in the right direction. Additionally, the other one is consistently waking up without the trademark black eye circles (typically an allergen but to what we have never been able to pinpoint), and we seem to have the hypoglycemic rages under control. We really enjoyed a full day yesterday of shopping and she complained of zero foot pain. Those feet have hurt all the time for a very long time and typically, after an hour or so, she will be so exhausted she will want to go home. Not so yesterday. We have slowly been increasing her stamina by walking around the campground three times a day so perhaps that is helping build tolerance but overall it was really a good day yesterday, at least on those levels.

Anyway, another full day of shopping, school looms and every single thing must be new for their return. I am so happy New Hampshire is super close and tax free every day 😉 wish us luck on our quest to complete that shopping list. Happy weekend everyone.

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