Doing Buhner Protocol Again

 

Buhner Protocol

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
• Zeolite
• Motherwort 10-30 drops 2-3 x day

 

 

 

Keep on keeping on spoonie family we can get through this.

 

 

 

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Cannabis Oil CBD & Homeopathic Support

 

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 .

 

Homeopathic Support

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!

 

 

 

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IVIG/Gammagard – Low Immune System

 

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.

 

 

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Heavy Metal/Toxic Metal Testing (IV) & Butrans 15mcg

 

Heavy Metal/Toxic Metal Testing (IV) & Butrans 15mcg

Yesterday I visited my newer LLMD for a heavy metal urine test. They are testing my body for any toxic metals that may be inside me such as mercury.  I was supposed to have this test years ago but this one is different than my other LLMD had. I used to work with metal and as a carpenter I would cut would that contained arsenic that I inhaled that made me feel sick. At that job they didn’t care about safety so I would inhale it and get stomach cramps and feel faint. So I may have some high metal levels.

So the test is 6 hours of urine collection. They give you 5-6 pills and 2 different meds injected in an IV to draw out the metals. The meds they gave me made my urine smell like sulfur. I worked in a refinery so I smelled a lot of sulfur when the trucks came to fill up their tanks, yuck.

So I sit down in the IV therapy room in the chair and the nurse explained to me how it all works. She explained to me how there are side effects that “only 10% of people get” and she swore to me I would not have any problems from the IV/Pills. I swore to her I always get side effects and I would be the 10%. The side effects are an allergic reaction which causes “fevers, chills, headaches…” which we already have with lyme anyway. She said if I got an allergic reaction it would show up between 6-8pm.

Well with my luck I got the allergic reaction to the IV/pills at around 6:30 pm (IV was at 2pm). I started with a fever then had the chills really bad and my hands were cold as ice. Then my usual daily pain (9-10 on the pain scale) became a 12. I was hurting so bad even my soft chair and bed felt like I was laying on a hard jagged surface. I felt like my flu like symptoms with lyme were going crazy.

I am still in more pain than usual. The fever and chills are gone but I still feel extra sick. I took 50mg of benadryl and tylenol to help with the reaction. I will never do that test again. The pain was so bad I cried pretty much all night and day and I am used to severe pain. It must have made my lyme mad my bones, muscles, joints, arthritis…every part of me hurt more than usual and I didn’t know that was possible.

It will be 3-4 weeks before I get the results.

 

After being out of my Butrans pain patch for 2 weeks thanks to my PCP I finally got my 15mcg in today. CVS, Walgreens don’t carry them so Walmart had to order them. There was a back and forth battle with insurance, the doctors, pharmacy to get them. I guess it’s a really high dose and not a common thing.

I don’t feel any big difference with these patches. They said I would but it makes me feel maybe 5-10% better as far as pain goes. For me there is no “high” or “loopy/feel good” feelings I really don’t notice I have it on. I’ve been on 5mcg and 10 mcg for a couple months now. I wish some pain killer would help but for now my 30 mg of Norco a day and Butrans 15 take the edge off.

 

 

Hope all you lyme warriors are hanging in there and finding better days.

 

 

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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.

 

New Treatment

Byron White Formulas

• Detox 2
• A-Inflam
• NT-Detox
• 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.

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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.

 

 

 

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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?

 

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Homeopathic Borrelia Treatment Vial 4

 

(Update)

Last night after writing this post I got worse. I couldn’t walk (happens from time to time) and my arthritis was really bad. I was puking, seeing stars, and having air hunger on top of the stuff below. I am tolerant to pain mostly after having it my whole life but the pain scale was 11-12 (severe) so I took a  Dilaudid and norco combo (pain killers). I cried for nearly two hours in bed and my bed felt like laying on a concrete floor. I can’t say this was a herx but maybe a flare on top of the herx I was already having.Today I am still very bad and I hope I am making sense.

I had a rash break out on my skin (see the picture below). I also had blood pooling (red rash) from my hyper POTS on my feet and ankles. My whole foot gets bright red or both feet. Last night it was only my right foot. The rashes are hard to tell the difference. I have a Lupus rash on my stomach, back, face, chest… then Raynaud’s disease type purple rash when my legs fall asleep on my feet and hands.. and then the blood pooling rash… Bartonella rash… then finally the lyme rashes always vary in color size and shape.

 

Treatment

I wanted to update those of you who are interested in this homeopathic treatment. I started this treatment about 11 or more days ago and he way it works is you drink one vial of liquid every 3 days. I can honestly say by vial 3 and 4 I have been herxing daily now. It is not tat full on “oh no I think I am dying” herx like with antibiotics but it is pretty strong.

I am having very hot skin (hotter than usual) burning in my face and head, my head feels like it wants to explode, buzzing in ears, arthritis is worse, feel like I am running a 103 fever, can barely walk and more. So I want to say FOR ME it is working. We are all different, have different diseases and the length of our diseases so I say use at your own risk but this is a cheap alternative to antibiotic.

Look at the picture above and what is the “active ingredient”? That’s right Borrelia. The theory I am told (since I do not see a homeopath doctor) is that our body has allowed the live spirochete (Borrelia) to have access and live in our body and is fooled into thinking they are not harmful. So the Borrelia I am drinking is dead (inactive) and you hold it under the tongue and drink it down. Once in the body your immune, body sets off the alarm and starts to attack the foreign invader and as those are being attacked the live spirochetes already living in your body get attacked in the confusion.

(Note) I am told the borrelia are not present and here is what a twitter friend says about the treatment: “There is no Borellia left, just the energy signature from being potentized“.

If you know a better story of the theory please share as I am herxing and not in the best writing mood. lol …More updates soon.

 

 

– As always I wish you all a safe and healing Lyme journey and I hope some of you are progressing. Stay positive and keep up the fight. We will all beat this and get the word out there.

 

 

If you would like to know more about the treatment and cost….etc…. I have a link and a blog post about it HERE

 

 

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I get this rash often sometimes on my face or on my body.

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Homeopathic Treatment For 30 Days

 

Although I started back on antibiotics this past week I ran out of some meds so in the meantime I will be trying something new. A friend recommended a Homeopathic treatment to me that you can purchase online. I have heard others talk about it and they had a herx from this treatment and felt better.

I always keep an open-mind and I want to try every form of treatment (antibiotics, IV, injections, Homeopathic, Herbal protocols, Diets) before I can knock them or tell my audience on this blog that they didn’t work for my situation. So with the good feedback on this product I started tonight on Vial #1.

This treatment is called Deseret Biologicals – Borrelia Series Therapy (10 Vial Kits). It comes with 10 vials that you take one vial every three days for a month. You pour the liquid (which I believe is alcohol based) under your tongue and hold it for a minute and then drink it down. It says that symptoms will worsen between vials 2-4.

Today is only day one so nothing to report yet. I will try to keep this treatment updated. I will be going back on Clindamycin and Minocycline after this treatment.

 

If you are interested in trying this treatment you can buy it HERE

 

 

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LLMD Visit – New Treatment; IV, Lupus, Mold…

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Woke up at 7am (my usual bedtime or near it) after one hour of sleep to head on the long car ride to see my LLMD. There was a lot of traffic due to the holiday travelers.So I ended up getting home at 5:30PM, talk about a long day. The car ride made me sick, the 3 hour IV made me feel worse. I had a blood clot my first day on IV. That is the reason I never had a Picc or Port since I am a clotter (MTHFR).

I saw my main LLMD and one of the first things he said was “I think you also have Lupus but it’s not RA“. So good news bad news I guess. I went to ask if I could stop all oral antibiotic for at least 6 months to give my body a rest. Well after a talk with the LLMD I am still on antibiotic and will be for a while. He says I am real sick and not getting better so he is worried. He said it will be a long road.

So the doc came up with a new treatment and asked that I get tested for mold health issues since he thinks I have those also. What fits all of these puzzles and positives tests I have every time I visit is that I was exposed to black mold for years, lupus runs in the family, bit by ticks, but by thousands of mosquitoes in one day…etc. So I am never in shock when I hear I am positive for something.

I will be starting a peripheral IV for at least 3 months that I know of. I will switching from Clindamycin oral to Clindamycin IV. I am stopping A-Bab for now. Treatment below.

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New Treatment:

Clindamycin IV (2 times per day)

Minocin (6 per day)

Coartem (8 per day) pulsing

A-Myco (20 drops 2x a day)

A-Bart (40 drops a day)

Cryptolepis (20 drops a day)

Meriva 500 (2 per day)

 

*plus my usual supplements like; Vit C/D3, Fish Oil, Chanca Piedra, Milk Thistle….etc.

 

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