Tag Archives: LLMD

LLMD Visit – New Meds 

7 Jun

  
My latest visit to the LLMD. Brain pressure has been something I’ve been suffering from for many years with cluster headaches and frequent migraines. Also aseptic meningitis from IVIG infusions. This was just a routine follow up appointment for the stupid pain meds law. But while there we addressed some of my current medical issues. 

My blood pressure has been high again lately and my heart acting up. The doctor said she could prescribe a medication for my hypertension which would mostly be for the cranial pressure called Losartan. So far it seems to be helping a little and my brain isn’t hurting as much. The cranial pressure makes it hard to think, react, and causes one to feel absolutely horrible each day. It’s a constant non-stop pressure that’s been there for at least 6-7 years. I hope this medication will continue to help give me at least one of my hundreds of symptoms some relief. 

I will be starting LDI injections soon. I had to check my vitamin D levels and I will be increasing the Vitamin D level to I believe she says a “90” or else you can’t do the injections. I’ve had a history of low D in past and have been on 50,000IU daily to get it back up. With Lupus I cannot be in the sun and get natural Vitamin D and I have a genetic problem with converting Vitamin D so it’s hard to get D. 

My blood has been thick again and I’ve been clotting during infusions. Blood thinners work too good for me such as RX or baby aspirin so we are going to try Nattokinase. This is a supplement blood thinner which should keep the blood flowing. At my recent blood test the phlebotomist said it took a long time to get the blood and it was sluggish. When I take baby aspirin I bleed from my ears and when my nurse stick me with the IV needle I bleed out all over the place. So this should be just the right amount. 

Minocycline and Tinidazole are the only two meds that help keep my Lyme from having a party so I’ve been on them as a maintenance dose. But I have been herxing a lot and having a build up of too many toxins that I can’t detox fast enough so we are cutting back on the dose. With Dr. Harris I think he had me on such a high dose of Minocycline even my primary’s and other LLMDs say “that could have killed you”! I had to go to the ER on only 3/4 of the dose he wanted me on. So be careful with Minocycline it’s rough on the brain or Lyme in the brain. 

I have an IVIG infusion this week so I need to rest up. I wish you all a much better week! Stay strong guys/gals 

 
Tonight’s smoothie  

Visit To LLMD – New Treatment 

11 Apr

  

Visit to LLMD 

First let me start with a quick update; I’m still recouping from that car ride to the Lyme doctor. For those who are new, my doctor is about a 2 hour car ride through winding roads in wine country or 4 hours plus round trip depending on traffic. I know some travel much further but for me I am homebound and nearly bedridden again so leaving the house is very hard. My brain is still inflamed, I’m more lethargic than usual and can’t seem to get enough sleep although I’m skeeping 12 hours a day. 

My LLMD says although many other doctors have given up on me or called me “too complicated” she says she’s not giving up on me “yet”. This visit was one of those forced visits so I can get the face-to-face to please the stupid pain meds law. But we also went over blood results. That test I posted I while back although it mentions cancer a lot when looking online, it’s an inflamation marker test kind of like the c4a. Mine was high but not very high, which is odd because my body is severely inflamed and in severe pain daily so I think those tests aren’t very accurate as to what we actually feel like. 

She said she wants to help my brain inflamation and swelling but being a natural doctor she doesn’t like prescription meds as much. So she has me back on Chinese skullcap, quercetin and Curcumin. I asked for a migraine med but she didn’t seem to think any were helpful. I get migraines, cluster headaches and regular headaches daily but the migraines maybe 5 times a month. The brain swelling/pressure has been with me for 6 years. Sometimes it’s so severe I can’t even talk. I can tell the difference when I have aseptic meningitis versus the daily brain swelling or herx from the Minocycline in my brain. All are very painful and can cause one to want to end your life but I won’t give up guys/gals I promise. 

She said although my Lyme is 32-33 years old (and I’ve been reinfected in 99′ & nearly died) that it is not responding to anything and therefore not treatable for a “cure” AKA remission. So I’m on what they call a maintenance dose of meds to keep Lyme calm. I was on Minocycline for the Lyme in my brain but will be adding cyst busters and biofilm busters again. She thinks the doxy and Mino are not enough and not reaching the Lyme since mine are in very old cyst form. I will also be on nystatin still for candida that never seems to go away. If you are a long time reader you know I had a severe case that went bad and is TMI. 

I will also be taking Lyrica again but she put me on a low dose since I had side effects. The Lyrica is for my nerve pain and FMS. So I have pain meds for muscle, bone and now nerve pain again. For those wondering how you tell the difference? Nerve pain is the tingling, stinging, feeling of needles, numbness, nagging, shooting pain that comes and goes, sensitive skin, burning skin….etc. My worst pain was in my arms where my RSD was but since I had a few hernated discs explode in my neck (which is like hot lava under the skin) it caused my arms to become numb and have very little feeling to touch. I don’t feel needles in my upper arm anymore. I think it’s called radiculopathy

I’m trying to recoup and save my energy for my IVIG infusion on Wednesday. I get worse brain swelling every infusion so it’s a love/hate relationship with IVIG. 

I hope you all are fighting with everything you have and finding better days. Stay string my friends! 

  

Lyme Segment On KGO Channel 7 With Amy Tan & Dr. Stricker (Updated W/ Link To Video)

4 Aug

amy tan

 

Beyond The Headlines – Lyme Disease Segment

 

Here is the link to watch the segment (video) in case you missed it: CLICK HERE FOR VIDEO

I won’t go into too many details since I am still having a rough time but I wanted to share. ‘Beyond The Headlines’ aired today with two different stories of lyme disease sufferers. The segment featured author Amy Tan and Dr. Stricker (SF LLMD). It was on KGO Channel 7 and they did a fairly decent job of getting the fact that lyme is not curable but only goes in to remission. A lot of people think lyme can be 100% “cured” and I hate to give them false hopes. Amy Tan talked about how she is feeling much better with Dr. Stricker’s help (which is a pretty popular story on the Internet for years) and she is able to read, write and function better yet she still cannot drive. Amy spoke about what we lymies go through like seeing 20+ doctors and getting different diagnoses or false reading on lyme testing. Stricker talked about ticks and lyme. There was also a story on two siblings who suffer from lyme and were/are bedridden but one is doing better after 3 rounds of stem cell treatment in India. I was supposed to see Stricker after Dr. H but I never did. I can’t find a link to the show so I hope it will air again or surface on YouTube.

 

Website link just in case the hyperlink doesn’t work above: http://abc7news.com/health/beyond-the-headlines-lyme-disease/242626/

 

Update On Myself:

I have been feeling much sicker and more pain that the pain meds don’t seem to be helping much (120mg of morphine, norco..etc). I have avoided going to the hospital the last couple of days. I am fortunate enough that I have all he same stuff the hospital has here at home. The ER never helps me or knows what to do anyway so I just stayed home crying a lot but I wish I was in the hospital sometimes or had a full-time nurse. I used to be tolerant to pain so it takes a lot for me to want to go to the ER or cry (extra severe). Lyme can get so much worse than you think and you can become bedridden and can no longer take care of yourself  if you are not diagnosed and treated within so many years after being bit. Just when you think it can’t get any worse it does, that’s my advice to those who can still function pretty well with lyme and ask me why I can’t work or drive.

 

Keep up the fight! WE have no other choice but to keep on fighting for a better way of  life. Stay strong.

 

 

 

 

 

 

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LLMD Phone Appt & IVIG Infusion Today

16 Apr

IVIG 2

 

LLMD Phone Appt & IVIG Infusion Today

Just a quick update. I haven’t been feeling well at all for the past 2 weeks. Feels like a flare but a little different so I’m not sure. All my symptoms are worse and I wasn’t able to leave the house to buy a gift for a friend until one night I forced myself to go. I was extra dizzy and got car sick as soon as we left the drive way. I was hoping to travel for the summer to meet friends but I do know if I can hold up. I haven’t traveled (flight) since 1996.

I have a follow-up appointment today with my doctor from GMG. We will go over blood results to see why I clot and also bleed out. She will be seeing how the pain meds are working and how I am doing on the meds (herx). I haven’t had any herxing from the coinfection meds or any supplements she gave me. I will also let her know my heart is under control now and back to a normal POTS range. She may be adding in some new meds but I can’t remember.

My home nurse called and said she could do a night time infusion since she knows I am a night owl (lymepire). So the infusion should last about 8 hours and she will be coming over at 4pm. I will be taking claratin, benadryl, tylenol, water with electrolytes before the infusion begins. I hope I don’t have the same bad reaction as last time that was a living hell and hurt my brain so bad. Wish me luck with round two.

 

As for all of you, I appreciate all of your feedback and support and I hope you all have someone supporting you as well. Never give up this fight, we will all make it to the top. Have a day and smile.

 

 

 

 

 

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New Heart Meds & First IVIG Infusion

15 Mar

IVIG First One

Heart Meds & First IVIG Infusion

My new home nurse came today at 9am (my usual bed time) to start my first home IVIG infusion. The infusion was supposed to last up to 4 hours. It ended up taking about 5.5 hours.

At my last appointment with my lyme doc she told me my blood pressure was too high and I needed to monitor it daily and record it. Well my nurse walks in this morning and takes my blood pressure and her eyes lit up and she said “you are 165/112 that is way too high and you have been just sitting there relaxing since I got here, you could have a stroke one day!”. I told her “yeah this is pretty common since I have hyper POTS I am always tachy”.  So she waited another 30 minutes and took my blood pressure again and we got the same reading.

So she was freaked out and said “in all of my years of being a nurse even in a hospital I have never seen someone so high constantly, most are brady or on the low side”. So she said she felt uncomfortable and called my LLMD right away to ask her to prescribe heart meds. Within 15  min Walmart had my prescription filled for Lisinopril 10mg. I am told to take up to 2 per day as needed if my heart rate is higher than the normal 120/80 and around the 130/90+ range. I have used Beta Blockers in the past for my heart but this med is new and different for me. It’s a ACE inhibitor. So I have hypertension/tachycardia again. But this wasn’t a surprise I have had high blood pressure off and on for 5 years and my Pulse OX used to set off the alarm at 115 pulse daily last year. I know a lot of POTs friends who are high BP also.

The IVIG went pretty smooth. I clotted once or twice and it stopped or alarmed the IV pump. I don’t feel any side effects from the IVIG yet but it’s only been a couple hours since we finished. I was just a little light-headed. The new heart pill is making me more sluggish and my vision seems weirder for now but that should get better as I get used to them. I hope these infusion for my Immunodeficiency will start to make me feel a little bit better.

I will be getting IVIG infusions every 4 weeks for 6 months and then we will see if I need to increase the frequency, continue them or stop them. Next up will be my Ketamine infusion at UC Davis. I only slept maybe an hour last night so I am heading to lay in bed and see if I can fall asleep for a while. I hope all of my fellow chronic illness warriors are having a nice Saturday. Find a reason to smile today no matter how much you may be going through.

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Advanced-Lab Lyme Culture (Blood Test)

2 Mar

logo

 

Advanced-Lab Lyme Culture (Blood Test)

I just wanted to quickly answer some questions I see often asked about the lyme culture test. The Advanced-Lab Lyme Culture (spirochete test) is what is called a “direct” lyme blood test. The other lyme tests are “indirect” and can be very inaccurate. I am told and guaranteed that the Lyme culture is nearly 98% accurate, no false-positives, and the test is very easy to read and understand, it will either say “positive” or “negative” and it comes with pictures (2″x2″) of the spirochetes grown in your blood if positive. There are no bands to figure out on this one.

The reason I highly recommend this test is because after 3 years of many Western Blot tests which were “INT/IND” or “Negative” and after treatment I was beginning to think my Lyme may have been in hiding but I was still disabled. I couldn’t understand how I could feel so horrible in a living hell yet my blood work would show nothing. Doctors would belittle me and say there is “no lyme in California blah blah” So I took the lyme culture as a peace of mind to know for sure if I had lyme disease and for proof to show to all the doctors who laughed with that “I told you so” look on their face when my Western Blot was negative.

So many people ask if it is worth it and I say yes it is. It is the most accurate test that I know of. All of my doctors including primary (IDSA) doctors even believe I have chronic lyme now. All of my LLMDs swear by the test and I no longer have to keep testing for lyme hoping to catch it in my blood.This was really a game-changer for me and my case so I hope it may help some others. If your primary has a problem with the test you can get advanced-lab to write you a letter by email that says “there are no false positives, it’s accurate and they stand by their test…etc”.

Cost?

The cost was $500 when it first came out (Dr B was also doing free tests when it was brand new) but it costs $700 last year when I had mine. I have Medicare and they do not cover it. I am not sure if any other insurance may reimburse you.

Where Do I Get The Test?

Your doctor or LLMD will have to order the test kit or have it on-hand so call the office and ask if they have it in stock or offer the test before you waste your time/energy driving there. Only certain offices will have the test kits so if your LLMD does have it then try a nature path or any other doctor that deals with lyme. My test was from a LLND not from my regular LLMD office. But that office no longer takes Medicare patients so I cannot go back to see him.

How Long Does It Take For Results?

This questions depends on your case of lyme. The fastest turn-around on getting the test results back is 10 days which I am told isn’t common so I think this means very active lyme or the lyme has been in your body forever (I’m not sure though). Most commonly results can take a month up to a few months I believe to get back. So you will need to be patient with this test.They are trying to grow spirochetes in your blood.

My test came back in only 10 days, I received a phone call from my doctor with the “bad news” then was mailed a letter from my LLND’s office that was from advanced-lab showing the positive results with a picture of 3-4 spirochetes in my blood. They even glow lyme green.

Special Instructions:

I cannot remember all the details but I know they only do the test on certain days and at certain times of the day so Fed Ex can pick up and get the blood out on time to ship it overnight ASAP after the test (if it is late you will need to do the blood work over again). The phlebotomist will need to read the instructions carefully and get the vials just right. You can’t be on antibiotics for 30 days before the test (I think it was 30 days or 2 weeks). I can’t remember if I had to stop other meds just for the day or fast but they will let you know at the office.

*I am not a doctor and I do not promote any companies, I am only expressing my personal opinion and what details I can remember. I could be wrong about some of the things I wrote but these are all things I have heard from advanced-lab their self via email or straight from my LLMDs mouth. This is also from personal experience.

Good luck and I hope you get the results you want! Stay strong lymies!

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Visit To New LLMD – New Plan

1 Mar

new meds gordon visit 1IV at santa rosa

Visit To New LLMD – New Plan

Yesterday my mom and I I took the long car ride to see my new LLNP/LLMD in Santa Rosa. I was familiar with my new doc from talking with her daughters about InnaHouse and Lyme and I also follow my doc on Twitter. She is the author of “Nature’s Dirty Needle“. I think I spoke about her in a previous post so on to the visit….(FYI this medical group does not take insurance like Hynote did so the visit/meds/IV were $900)

The first visit was a couple of hours long. She told me I was complicated and my body was a mess so she wished she had more time with me, she was just getting started figuring some things out. She told me that my Lyme has been in my body so long that using any more antibiotics would be criminal since they won’t help my case. She just wants to focus on getting my immune, inflammation, protomyzoa coinfection, adrenals and pain under control.

She looked at a rash on my body and after talking about some things she thinks I have mast cell problems so I will be taking Ketotifen for that instead of the Benadryl I currently take. She was able to obtain most of my test results from Dr. Hynote’s last Lab Corp blood work. I had some not so good results on many of the tests which I will post below.

I will be going back on the gluten-free diet. I already cut out sugar, caffeine, dairy, soy a few years ago but now she wants non-GMO, all organic added. She stressed that I was too inflamed from lupus and other issues so although I do not have celiac I need to cut the gluten out. I will also be adding a T3 med to my levoxyl daily for my hypothyroid. I will be getting an oxygen tank finally to use as needed. I may need beta blockers soon for my heart, I am tachy again but I am either tachy or brady off and on.

She spoke about my Advanced-Lab Lyme Culture and said my “10 day positive result” was not very common and she only has 1-2 other patients who had the quick response of growing spiros i nthat short of time with this test. So again after 3 years of aggressive antibiotic treatment (IV, injection, oral), herbal protocols…etc my lyme culture was positive in only 10 days and showing lyme is still highly active I believe. I highly recommend the advanced-lab test even for the $700 you will know for sure if you have lyme disease. It’s very accurate and no false positives and that CDC contamination story was false.

I had a Myers’ Cocktail IV infusion right after the visit and it just made me sleepy. No energy today either but nothing ever gives me energy with CFS.

Here are my instructions:

  • Medi-Clay FX & Charcoal – for detox
  • Lipotropic – for liver support
  • Hepat, itires, Renelex – for lymph drain, kidney support
  • A-Fung (Byron White) – for mold
  • A-P (Byron White)  – for parasites
  • Curamax – for inflammation
  • IVIG – IV infsuion for my immune IgA
  • Norco 10/325 (4 per day) – for breakthrough pain
  • Morphine Sul ER 30mg (3 per day) – for long acting opiate pain reliever
  • Butran Patch 20-30mcg – long acting pain reliever *when not on Morphine ER
  • Katamine IV – high dose with other meds (completely knocked out) for pain & more
  • Cytomel 5mcg (1-2 twice daily) – for thyroid T3 support I believe
  • Ketotifen – for mast cell issues, anti-histamine
  • Cortef 5mg (Hydrocortizone) 1-2 twice daily – steroid (I know) for inflam/adrenal
  • Flexeril – for my spinal stenosis and muscle relaxer for sleep
  • Phosphatidyl Serrine 1-2 caps at night – for high cortisol at night (adrenal)
  • Oxygen Tank (O2) – as needed for low o2
  • Ozone IV – as needed
  • Vitamin D3 (Micellized) – I can only take up to 4,000 IU per day now Vit D issues
  • Mangosteen – for brain
  • Possible Heart Meds – I’m tachy (high heart rate) so I need to slow my heart again

Blood Tests Ordered:

  • Fibrinogen – she thinks this is why I clot with IV’s
  • TBIC, Iron, Ferritan, Testosterone, Folate, B12

Blood Test Results (From Hynote visit in December)

  • IgG Subclass 1 – 417 Low (range 422 – 1,292)
  • IgG Subclass 3 – 23 Low (range 41 – 129)
  • Immunoglobulin A, Qn, Serum 49 Low (range 91-414)
  • Calcitriol (1,25 di-OH, Vit D) 90 High (range 10 -75)
  • Human Trans Growth Factor (TGF-bl) 5,560 High (range 344-2382)
  • Cortisol 22.7 High (range 2.3 – 11.9 or 6.2 – 19.4)  at time to sleep

Pictures from the car ride (although the car rides make me sicker and in more pain I find the beauty in the little things) almost all of these are from a moving car so it was hard to focus on the things I wanted to:

Santa Rosa 3Santa Rosa 4Santa Rosa 5Santa Rosa 2Santa Rosa 1