Posted 11/20/2020 8:57 PM (GMT -7)
I was treated a few years ago at the Lyme Mexico clinic in PV and I thought I should add some comments reflecting my opinion of my experience there in case it may help someone else. Thanks much to Girlie and others who helped me when I was on my own healing journey.
When I was trying to figure out what to do, details were often missing and I remember how hard doing anything or figuring anything out was at the time so I'll add what detail I can and hope it helps. If anything in here contravenes a rule of the forum I apologize - please let me know I can edit it out.
Please also remember that Lyme is very complicated, we are all on our own healing journey, my experiences may wildly differ from someone else's and my opinion below is pretty much just that - purely my subjective opinion.
My story started in 2014 when I was bitten (likely by a tick but I never saw what bit me) while cleaning up an inner city yard in Alberta, Canada. My hand swelled up and I started getting strange symptoms a few weeks later. During the next 3 and half years I went to many doctors and specialists and was often treated very poorly, dismissed outright or informed that I had a psychological disorder, etc, etc - a common story for us all and not one I care to go into too much - how I was treated by the very people who were supposed to help me while I suffered so terribly and had no history of "wasting" health resources prior to that, still disturbs me very deeply.
When I first figured out that I likely had Lyme, I was quite confused as to what approach I should take, my savings were running out, etc. On top of that, an internal medicine specialist here, had put me on a drug six months prior that suppressed my immune system; in hindsight that was the worst thing he could do because while it reduced my skin sensations etc I started deteriorating extremely rapidly. I figured I probably had one shot left to try something before my physical & neuro symptoms worsened to the point that I wouldn't be able to figure out or take next steps. In the end after doing some research and speaking with a few people I took my chances and went out to this clinic.
Firstly I decided that as it was a bacterial cause I wanted to be treated with IV antibiotics. While researching I found very few peer reviewed studies that examine results of alternative therapies with large enough sample sizes and over a significant duration of time,whereas I was able to find a few such studies showing efficacy of antibiotic treatment for Lyme.
When I spoke with Dr M I explained that and he assured me he would tailor my plan towards that - his 30 day plan also included some ozone treatments, IV Vit C, and a chemo cocktail as well for a total of just over USD 10K. I believe their costs have increased very significantly since then.
What I noticed at the time was that almost everyone's final bill (unless they had added some treatments) was pretty close to their initial quote. In my case I added one treatment but removed many more, but still paid almost the same in the end as they ended up charging me for things that I did not expect to be charged for (as it was not mentioned prior nor charged for others e.g. routine blood tests) or even charged that much for e.g. USD 84 for a stool culture.
Personally I thought Dr. M was genuinely caring and interested in treating Lyme. He had suffered from it himself and it felt incredibly validating to be in an environment where you are surrounded by other patients who have pretty much the same symptoms after being told for years that what I was saying I was experiencing was bizarre and unheard of. You are not treated as a person with primarily a psychological illness to be handwaved away but rather someone suffering from a physical illness. He also seemed to feel genuine frustration as it's not an exact science and some patients do well with treatment but others don't.
Later on he told me he hadn't thought I would be one of the ones who recovered so maybe there's an element of luck there as well.
He is also patient - at the time my neuro sysmptoms meant that sometimes I didn't have the words I needed to articulate what I wanted to say. He also understood and catered to my desire to understand why he recommended certain treatments e.g. when I questioned a treatment he printed off and gave me a peer reviewed study and explained why he used it.
When I was in dire straits after multiple years of being ignored and treated poorly through the Canadian healthcare system, this Dr. took me on as a patient and gave the best he was able to give. For that I am deeply grateful.
I am happy to say that although I am not back to who I was before, several years later I seem to have fully recovered from Lyme itself. I was facing an awful end at the time, I am forever grateful for the opportunity to have a decent life again. The issues I face now are a kind of fragility that I didn't have before - I don't have the same levels of fitness and ability to fight off illness that I used to have e.g. if my partner comes home with a cold he'd get over it in a few days while I sniffle for weeks, if I get an infection it's often off to the ER for me as my GP can't get it to clear off after a few months of effort. While I can't run or bike 40 kms now, I can easily walk 10 km. I am satisfied with that... A few years back, lifting a mug to put in the dishwasher was something I had to think about.
However, there were some negative aspects to the experience there as well. I did expect some as I know it's a developing nation and expectations should be adjusted accordingly. However, there were definitely things that were of great concern and at points I thought it's just a matter of time and bad luck before someone gets killed. Things may have changed quite a bit since as well, I received treatment a few years ago.
I believe Dr. Morales was going through a difficult time personally at the time period I was there. While before I went there I had been assured that he came by every day - in the six weeks I was there, that didn't happen - we saw him come by once every few days and he didn't visit each patient when he came in. He also sometimes didn't seem to remember the treatments each patient was going through and considering the clinic at the time was much smaller and took on a small number 6-7 patients at a time, it did come off as a bit negligent to me. From a previous reference I had spoken to it seems that when he first opened the clinic he was much more available and involved and patients benefited from his expertise - at the end of the day my opinion is that we are going that far to be treated by him not to be outsourced to his team as much as he did while I was there.
The clinic at the time had several nurses, an administrator M, and a junior doctor M who came in every day and was there.
The nurses are amazingly lovely, hardworking, kind people but they are not like nurses you would expect to find in Canada - they do not receive similar medical training and their skills often reflected that e.g. getting IV catheters in became a torturous, sometimes multi hour experience for me. I kept hearing that my veins are bad but I'm middle aged, I'd never heard that before or since and I've had a few IVs placed since out here as well with minimal fuss.
I have heard that they have added at least one nurse fluent in English since, but at the time there was a language barrier.
One of the nurses was genuinely sweet and kind but seemed to me negligent and I observed her making multiple mistakes and responding with "esta bien" each time. One time she administered ozone to a patient through his nose without instructing him not to breathe it, observed him become more and more distressed unable to breathe and continued. His wife saw and jumped in and ripped the thing off of him and I had to tell the nurse to call Dr M as she just stood there repeating that it's OK. Dr M to his credit, once contacted, drove through red lights to get there and arrived within minutes.
There were also acts of amazing self sacrifice and kindness on the nurses' part - e.g. one of them had to travel many hours to visit her very ill brother at a distant city but waited for me to come in as she knew I preferred her to place my catheter. Another time when the clinic ran out of a piece of equipment that could not be procured for several days, she sat down and hand fashioned one for me herself. These are the incidents that I remember with fondness.
I've heard the clinic has done really well and has expanded the facility quite a bit, perhaps some of that funding could have been invested back in their loyal nursing staff in giving them better salaries, medical training, language coaching which would likely ameliorate some of the issues I mentioned above, that really impact patients. If Dr M has stabilized his position some more and spends more time at the clinic providing his skills and expertise to the patients more - that too would be a huge improvement over what I saw.
The administrator M is articulate and seems reasonably capable as an administrator. However, she lacks insight or ability to gauge her own skillset and limits and regularly overstepped her bounds, most seriously by providing medical directions, while lacking a medical background.
For example, the very first day I received treatment Dr M had met me before, explained that I would receive a test abx at low dose and then we would gauge reactions, etc and go towards full doses the following day if I did well. I received the low test dose of IV abx, the next thing I know this administrator is there advising that I should immediately start taking some of the full doses because I seem to have taken the test dose well. I had to unnecessarily argue and insist for a while that it was the first day and we would follow the treatment plan that the Dr and I had discussed. She became so upset that I was not compliant with her medical advice that she pulled me into a private room to try to chastise me about my attitude, that I needed to trust her, etc.
Trust is earned, and to earn it one has to behave in a trustworthy manner.
Very ill and fragile patients come to this clinic and they are providing some very strong treatments - in my opinion, definitely not the environment a young administrator with no medical knowledge should be playing doctor in, no matter that she had been there for a while and felt that she was "very familiar with the treatments".
The junior doctor M was very mild mannered and allowed her to take a dominant role without paying much attention although after I complained, Senior Dr M advised him that he is the Dr there, not the administrator and he needs to provide medical directions not her when he is not around, which is the case majority of the time. I didn't see the situation improve even after this conversation though - although the administrator did stay away from trying to provide me with the benefit of her "medical" expertise, she continued to do so for the other patients in main Dr M's absence - which was the majority of time. She then also refused to provide the small tasks she would do for the other patients to make their lives easier e.g. ordering delivery fruit smoothies from the nearby shop. I would have to get my IV closed off and go myself to the mall to get it.
I figured it a decent bargain, if the ease and comfort of delivery smoothies also came with a side of her medical treatments, I was better off struggling to the shop myself.
There was also a sense of the staff (not main Dr M) pushing more and more different treatments. They didn't try too often on me as I was very clear that did not have the budget the other patients had and I was there for the abx mainly so I would stick to that thank you very much. IV ozone for example is quite damaging to the veins and since they kept telling me I had bad veins I opted out of receiving IV ozone treatments after one treatment as I wanted to save my veins to make sure I could receive what I was primarily there for - the full 6 weeks of IV treatments. I made friends with one of the patients there and I felt that they leveraged his deep desire to get better, his sense of desperation after so many years of suffering and deep pockets to push so very many different treatments onto him. My friend unfortunately did not get much better - I don't know why things worked for me but not for him - I am younger and had only been ill for a few years compared to his decade or so - maybe this all played a part but again I don't know.
This is purely my speculation, but I think our body can only handle so much at a time as well and needs time to recover. While there, I agonized over whether I should add more treatments as the staff kept advising - what if that's the thing that makes me better? But I am glad I stuck to my original plan and didn't overload my body. My treatment plan in the end was IV antibiotics, IV silver, "biofilm breakers", IV vit C.
Some of the alternative treatments on offer also looked like pure snake oil to me - this is purely my opinion of course and maybe there's someone out there who has actually benefited from some of these myriad treatments.
The follow up was 3 months of oral meds and a couple of telephone visits with Dr M which I really didn't feel was supportive enough it felt like being abandoned without support while you are trying to figure things out.
A few months later my Armin labs tests came back showing no infection. I did not get better immediately though. Recovery was slow, huge ups and downs for over a year and half after that. At one point I even went in to see Dr J in US but was unable to take his treatment protocol because of side effects and abandoned it. At that point I felt so miserable and my brother said to me look all the tests say you've managed to clear the bacteria, so now lets focus on building your body back up. What I believe helped me the most then was that with his help I started and refocused on lots of rest, lots of good food and smoothies with fruit, veg, protein, bone broth, etc to rebuild myself, vitamins and healing my mental trauma - that I felt really plays a huge part too.
Then one day last year I was driving out of town and realized how good I felt - I finally felt I had gone over a hill.
If anyone has any questions I am happy to answer to the best of my ability, keeping in mind my experiences were from a few years ago and things have likely changed very significantly since. My comments above are purely my own subjective opinion of my experience.