First off it has been 4-5 days since my IVIG and I am feeling much worse today. I don’t have energy to write much. I might not make sense, I have been slurring my words and making up new words all night. I feel like have another illness in my body such as the flu or a cold but I think it’s just the IVIG and my body is not adjusting yet.
I had a phone appointment with my LLMD last Friday and she wants me on a Buhner protocol again. She says most of these herbs will help with my oxygen, inflammation and coinfections (plus lyme). I have been on a few of these herbs before with no herx or no success and I took a high dose.
I will be using the following for now on top of my meds for mold and all my other meds/supps;
- Sida Acuta 30-60 drops 2-3 x day
- Bidens 1/4-1 tsp 3-6 x day
- Cyrptolepis 1/4-1/2 tsp 2-3 x day
- Red Root 20-90 drops 2-3 x day
- Japanese Knotweed 1/4-1/2 tsp 2-3 x day
- Cat’s Claw 1/4-1/2 tsp 2-3 day
- Motherwort 10-30 drops 2-3 x day
Keep on keeping on spoonie family we can get through this.
Cannabis Oil CBD
The Rick Simpson Oil is becoming very popular but I didn’t start to take it because of popularity but rather because I know it will help me from experience with my other cannabis products. I have my card so it is “legal” for me in my state. I highly recommend cannabis to anyone wanting to know if it can help and many of my doctors have highly recommended it also. In the news recently I saw where the oil is helping those with cancer and a few kids with seizures have a better life. There is also the story of a fellow lymie who says it helped “cure” her lyme disease.
I have been a cannabis user since my teens but the past few years I take it to help with symptoms. I found that the edibles with cannabis help me the most. I would vomit/dry heave after dinner every night for years. The doctors gave me reglan, zofran…blah blah but nothing worked. Last year I discovered Kiva 60 chocolate bars with just the right amount of CBD/THC my body liked. Since taking the chocolate I do not dry heave or feel the need to puke after dinner.
I tried the higher potency bars but the THC just made me too high but as someone with a chronic illnesses we don’t really want to get “really high dude” we just want relief from symptoms. I still like the THC in my chocolate because it gave me my appetite back and my ability to eat without as many complications since I was down to a size smaller than I was in high school. Most of you probably want the hemp oil without the THC and with the CBD (the stuff that helps). You want to make sure you have a higher CBD count the better. The higher the THC count the higher you will feel.
So far I have been on the oil for about 3-4 days and I haven’t herxed like many say that they herx. I don’t really feel any side effects or any difference but I do take this at night hours after my chocolate edible cannabis. I take about the size of a grain of rice on a teaspoon of honey. You are to increase the dose every 4-7 days. But with the prices so sky high because of popularity I am being conservative. I paid about $100 for 2.5 grams with 26% CDB and 16% THC .
I was having a hard time recently and going to the ER for my chronic dehydration. I have been using the e-lyte concentrate electrolytes and pink salt. I was thought to have Diabetes insipidus which can cause chronic dehydration but we ruled that out because I only urinate maybe once a day if I am lucky. So it is either genetic or an absorption issue.
My LLNP gave me some homeopathic liquids to take from a dropper into water. The first one is Renelix which is for Kidney dysfunction or Kidney support. I also take a supplement called Lipotropic Complex for liver support and together the two are making me urinate like never before. I have tried milk thistle with other supps that are supposed to help but they didn’t do as good as these. I have urinated up to 6-8 times a day now and think this stuff is working and detoxing my kidneys and liver.
The other homeopathic liquid I take that is helping is called Itires. Itires is for lymphatic drainage. So far for me I noticed all of my swollen lymphs that have been under my ears and chin have decreased in sized and do not hurt as much or shock my face. My lymphs for years have been swollen and hurt to touch and I get this pain if I try to massage them with a quick lymph massage. The pain would last for hours and was really uncomfortable as if my lymphs were saying “don’t do that!”.
So far the lymph drain liquid has been working and I have no side effects from either liquid. I take about 15-20 drops each twice a day mixed with 8- 12 oz of purified water. I try to take them away from food or other medications. It may just be my body we are all different and react to things differently so I am only sharing what has helped me. I hope these will be useful for someone else.
Start today with a positive thought and a smile then continue to fight!
IVIG/Gammagard – Immune
Finally received my IVIG (Gammagard) supplies for my monthly home infusions. Just waiting on the nurse to call and set up the date she is coming to my house. I was supposed to do it last week the nurse was ready but the meds weren’t here yet. This will be my first time using any IV meds for my immune. My IgG has always been low for 5 years or more but my IgA was never low enough that insurance would cover IVIG so now it is low enough to get it somewhat covered. I will be paying $471.00 out-of-pocket for each infusion and that is after being covered by Medicare.
My IgG and IgA are low so we are hoping this will boost my immune and get those numbers up. I will start slow only doing one IVIG infusion every 4 weeks but that may increase in the future. Gammagard can cause headaches if you infuse too fast so the infusion for me will take about 4 hours but some can take up to 8 hours or longer. You are told to take Tylenol before hand. I will have an IV pump so they can keep the drip rate slow or low at the precise pace where I don’t feel the headache. There are many side effects with IVIG (fever, chills, muscle pain..) but many of them are already symptoms us lymies have daily so I won’t notice the difference.
Hope this helps me feel a little relief soon, I know it will take months before I notice anything.
New LLMD/Internist Visit
Went to Napa today for my first visit to my latest lyme doctor. I didn’t get to see the actual Dr. H today just her (umm word slips my mind) doctor. Basically went over all my history again and all my testing and treatment. Had some blood work for mold and will be taking a urine test for heavy metals.
So far the doc wants me on a Byron White treatment. I will be detoxing and trying to get rid of all the toxins she things are the reason I am not feeling any better. So the focus is on healing my brain and cleaning out the body before we go to the next step.
Byron White Formulas
- Detox 2
- Envi-Rad Detox
Total Amino Solution
*Plus all my other supplements I am already on.
Stay strong lymies and keep up the fight. Smile when you can.
Update: Homeopathic Borrelia Treatment Finished
I thought I would share my experience now that I have finished this treatment. If you want to know more about the treatment and where to buy it click HERE.
My memory is not the best but I believe by vial 3-4 I was herxing. This was not my usual “omg I am dying” severe herx I get while on antibiotics but it was a herx. I feel it was working. By vials 5-10 no herxing and no improvement. I can say this may work for some and maybe since I am considered a “complicated case” but my LLMD and my new LLNP that this was not aggressive enough? So I say for $49 it is worth a try.
I started back on Clindamycin and Minocycline right after since I was losing my ability to walk and really having a tough time. Within 3 days back on antibiotics I had a severe herx and spend all night in bed with my head splitting open and crying. I was so close to going to the ER but as I have said before they never help me and roll their eyes and yell at me when I mention Lyme or antibiotics. So I used all my detox methods and hoped for the best.
I am having a horrible few weeks (ore horrible than the usual horrible lol) and I cannot wait to see my new LLNP. I tried to get in earlier but he is booked as usual. I have no idea how I am writing this now but I needed a distraction from all of this.
– I want to wish all of you Lyme warriors a Happy Easter!! Remember to find just the smallest reason to smile through the pain and know that better days are ahead. Never give up the fight.
What Lyme Looks Like: Photos Of Some Of My 2 Years Of Lyme Treatment
This is what 2 years of Lyme treatment looks like for most with chronic lyme disease. This photo is only some of my meds, injections and a small portion of IV stuff. I couldn’t find the huge box of IV stuff. Plus early in my treatment I forgot to save my pill bottles. I always wanted to post photos of this so that is why I saved most just as a visual reference to what us Lymies go through and take to try and have even one “decent” day or quality of life.
By the way out of all of these meds only maybe 1 or 2 made me feel “okay” for a day or two enough to walk outside and smell the fresh air. Just being honest. I won’t give up hope though it took my aunt 8 years of antibiotics before she felt any relief and she’s only had lyme for 20 years to my 30 so I expect maybe 8-10 years?