Help! Define "severely" affected?? Is my LLMD aggressive enough?

Hi! I started treatment for Lyme four weeks ago and see a LLMD here in Europe because I for various reasons have to stay here while I am sick. However, I am concerned the treatment will not be aggressive enough and will be a slow moving process compared to how I see a lot of the LLMD's treat back in the US. I hope someone can help me out please!!

I recently got confirmed Mycoplasma and bordering-positive Bartonella tests. My CD57 came back 90 - though I am wondering if various herbs, supplements and Adderall/Amphetamines can influence my results as I've been supporting my body to the best of my ability for many months before seeing the LLMD and getting tested for the first time-(??). I am still waiting for the Lyme test to come back but my Babesia was negative (though I believe I might have this), as was the Anaplasma and Brucella. Should I be checking for any more infections? I am worried something will go undetected!

I feel I am very ill. I'm not able to work nor study (on disability/welfare) and I'm house-bound (couch-bound that is). I've gotten to the point where I take Adderall daily to avoid being bed-bound (without it I am pretty much a vegetable). I feel the Adderall/Amphetamines kind of masks how sick I really am because most of my pains and the horrifying headaches disappear when I take it, my brain fog and cognitive dysfunction also lessens a little, though it is still really really bad, and obviously I have A LOT more energy _compared_ to when I don't take it (though I am not able to, say, shower daily). I am in my early 20's and am devastated at how my life has been reduced, I basically have lost my life - and I was just getting started on this journey of life. Even with the Adderall the extreme fatigue is the worst thing I've experienced with this disease. It is so disabling, truly crippling.

My Horowitz's questionaire score is 140, so I have almost all of the symptoms, and even more not listed. My eyesight is getting worse, so are my skin issues (patterns, colors, bumps, "acne", texture, muscles, rheumatic stuff++), I even have black specks coming out of my skin as well. Pains in my nerves are increasing, sensitivity as high as ever, lumps appearing on my legs the last half year, chills, overheating, fevers, sweat, spasms in my eye/feet/legs/heart/all over, blablabla. The other day my mom drove me to the doctor's office. I didn't even recognize where I was even though I had been there so many times, I really had no idea and my mom was shocked and scared. I've been sick with 'something' since 2008 and ever since my health has slowly declined with the worst being extreme chills and feverish/overheating feelings daily until last year. For some reason early 2014 my health totally collapsed- I started feeling so fatigued, got a tooth infection and lost some gum within 2 weeks, bad night sweat, shortness of breath got really bad, shortly after broke out in itchiness and had these black things come out of my skin all over, the most extreme exhausting sickening fatigue I've ever experienced started (never left), racing heart, heart palpilations, shortly after got hit with what felt like Alzheimer's and Parkinson's - it was really scary, broke so many dishes, fell all over the place, loss of coordination, couldn't form a sentence, forgot words, names of family members, can't read, etc and since then more symptoms have just been added to the list every month. Had to move back home to my parents'- they are helping taking care of me. I just got my electrical wheelchair so I can "walk" my dog or go to the store when I feel like it. Got diagnosed with M.E. early this year, and sometimes it honestly feels like my brain is bleeding inside.

I am currently taking Azithromycin 500 mg and Tinidazole 500 mg ; one every other day. I've heard about a few other patients our LLMD doctor has put on IV antibiotics- WHY is it that some are put on IV? Are their conditions far worse than mine?
What really DEFINES "severly" affected?? Does my illness not seem like it is that neurological/severe? I am just worried this doctor is not aggressive enough (though I like that he incorporates some herbal support). I just feel like there is more that needs to be done, - (not so much from my end because I try my best to stay on top,) - in addition to probably adjusting and adding 2 or 3 antibiotics next time I see him. I don't know-- sometimes I feel like it is not that bad and then other times when I am off Adderall or it shines through or I wake up nearly paralyzed for a while I am just feeling angry and not taken seriously. Like, I am seriously disabled and it is incredibly surreal and I really feel like I am about to explode out of frustration. I feel like a prisoner in my own body!

Hi Happyfluffy - welcome to our community!

I'm glad you found us, as this forum is a great support system...so many caring, knowledgeable people on here.
Pirouette has given you a lot of good information...
I have a few tidbits I'd like to add:

Regarding the IV treatment -Even with neurological, late stage lyme, many LLMD's will try oral antibiotics first, and if no response, will then switch to IV.

Starting off with one antibiotic every other day - is a good thing - considering how ill you have described yourself...It is good to start off slowly, and see how you manage the treatment.
You don't want to hit it hard and fast..as with a high bacterial load, it will cause a massive die-off and could result in a herx that is unmanageable.

It is also great that your LLMD is interested in adding herbs to your protocol.

So, as Pirouette pointed out - take a look at the "New to Lyme..." thread - pay particular attention to the detox section. You should (if you haven't already) start developing several good detox regimens. This is crucial when treating for lyme disease.

Keep reading, posting, asking questions....we're here to help you!

Also, happyfluffy

I wanted to mention that the black specks emerging from your skin could be a symptom of Morgellon's. You might want to do a little reading about it and then talk with a lyme specialist about it. Unfortunately, this is another controversial condition and most MDs are uneducated about it and some even deny its existence and demand to treat people as if they have a psychiatric condition so be deliberate about who you talk with about it. Some research suggests it's a type of fungus.

p

Pirouette - Yes, I've done a lot of research on Morgellon's. about six months after the initial "breakout" last summer I noticed there were not only black round specks and white/clear grains but also some fibers emerging. But the fibers are mostly black, I only think I've seen a red one a once or twice. I was keeping it in check by applying coconut oil with clove essential oil last summer (that brought them out) but after a month and a half I got exhausted with the whole process and it seemed to calm down by the end of summer anyway.

I told my LLMD about the black specks and we briefly talked about Morgellon's because I had read that researchers recently had linked Lyme to Morgellon's. I don't think my LLMD knows much about it, just like probably most LLMD's(?). I've also read some believe it to be a fungus.

Either way, do you think I should try to find a doctor here in Europe who is more familiar with Morgellon's? I'm just thinking it might not be affected by the Lyme treatments and might need it's own specific treatment, and that would be essential for my recovery?

Post Edited (happyfluffy) : 7/30/2015 1:37:08 PM (GMT-6)

btw I understand your impatience happyfluffy, I've been dealing with my situation for many years and would have loved to blast these suckers with heavy duty iv abx and just have it done with. But part of me thinks I would have killed myself with herxing if I went that route? who knows.

I'm having steady success with a measured oral abx/herbals approach, and might look into iv abx down the line for "finishing" touches. It's a thought, but, if I can avoid iv abx that would be cool too. I eat super clean and do probiotics so I think that helps me handle the oral abx stuff, although even doing that stuff there are no guarantees that one won't have issues.

You should ask your llmd why some patients are on iv abx and some aren't. Could be your llmd always starts patients the oral abx route, and iv abx are only used if they don't respond well to the oral abx? I like knowing what the overall treatment game plan is and what the options and fallback options are and what is the strategic thinking behind the treatment and fallback treatments. Some doctors don't tell you anything and that's annoying. I'm a strategy kind of person and I want to understand the reasoning, logic, and breadth and depth of the doctor's strategy.

jrpsf: It's really good to hear you've made a lot of progress! Definitely gives me hope then!

sebreg: Haha I'm sure you're right! It would probably a lot harder for the body to handle.
I will ask my llmd to explain the difference in his approach when I see him. And I TOTALLY agree with you about the overall "game plan" and understanding the logic behind it --and even just to reflect the doctor's range and breadth as well as level of understanding and comprehension of the disease and patient's situation. I copied that paragraph you wrote and saved it in the document I'm gonna print out and bring to my next appointment (so I won't forget important questions and things I want to discuss). I'm just like you-- I need a strategy to pull everything together so that's a great reminder.