I’m back on Tinidazole as I mentioned in a previous post. The thought between my Lyme doc and myself is that since my Lyme is nearly 33 years old and nothing seems to help, I should be on a maintenance dose at least to keep Lyme at bay. The only meds that seem to make me herx or give me die-off are Minocycline for the Lyme in my brain and Tinidazole which is a cyst buster. My Lyme is in cyst form or biofilm form which most late stage Lymies have. For that you need to take cyst or biofilm busters.
First night back on Tinidazole and instantly I felt it working. My face was burning all night in my cheeks and ears. My stomach was cramping and had more pain than normal. These pills always kick my butt. I’m on day two and 500mg later my face is burning, I’m feeling very slow, dizzied than usual and feeling like crap. But in the Lyme world that’s a good sign the meds are killing some parasites and bugs. Remember to always detox and get rid of the die-off and toxins built up.
That’s about all the energy I have I need to rest. Wishing you all a much better week! Stay strong!
I’m very exhausted so I will keep this short. I had my monthly full dose IVIG infusion last Wednesday with my home nurse. It really wiped me out again and I slept 14-16 hours that night/day after. I can barely make it through the infusion without wanted to fall asleep. It makes my CFS act up or something where while I’m talking to my nurse I’m dozing off.
I had only 3 pokes (2 spasm veins) before we had success in my right arm but we had issues in my left arm with my RSD bring back (posted the story earlier). I took my pre-meds amd hyper-hydrated an hour before the infusion. These steps are very important to anyone doing IVIG and if you need more info I have posted to the details on a previous post about IVIG. Go to the search bar on my blog and type in “IVIG” or “pre meds” and it should bring you to it.
So far my brain was swelling a little but not the full blown aseptic meningitis as usual. It seems to be going down a little now. But I am still really exhausted. That was my update. Not doing well but hanging in there. I hope you all are doing better and giving it all you’ve got! Have a better week.
For those who followed me for a long time you know of most or all of my illnesses or medical issues besides Lyme. I have been living with RSD for maybe 10-15 years now. If you are unfamiliar with RSD/CRPS then click the link on the bold text in this sentence to go to a page that explains it better. Basically it is one of the worst pains that is severe and can be on part or the whole body. I describe it as being burnt in a fire and your skin is very sensitive to touch and feels like a burn wound. It’s a nerve pain that no pain meds can touch unlike my other muscle, joint, nerve, arthritis and chronic pain.
I had my IVIG last Wednesday and when the doctor stuck the needle in my left arm it hurt so bad I teared up. It felt the the needle was heated up unti it was hot metal and then inserted into my vein (which spasmed and collapsed). I said “ouch that hurts bad and I usually don’t feel the needles”, my nurse looked at me funny. So we ended up putting the IV in my right arm.
Later that night the severe burning came back which is different than my usual daily pain from head to toe. That’s when I knew my RSD was back to being severe again. It had eased up after my discs in my neck (c-spine) had ruptured leaving my arms numb and tingling for years. The neuropathy in my arms helped relieve the RSD pain which is weird because nothing seems to relieve RSD pain. My pain started to be severe it seems after surgery on my left knee. The RSD pain is only on my left side of my body and starts at the top of my shoulder down to the calf muscle on my left leg.
The pain is very intense, nagging, radiating, burning, non-stop and nothing can touch your skin or it’s worse. Even my shirt and pajama bottoms (I wear daily) hurt the skin. My flannel soft sheets hurt the skin and even an Egyptian cotton sheet hurt the skin. Those with RSD are very uncomfortable and it is said to be the “worst pain in the world” amd they say many with RSD end up taking their own life and can’t deal with the pain.
I was hoping to get ketamine nasal spray to try but my doctor would not give it to me. I am still waiting to be approved for the ketamine infusions since I’ve already had one lower dose infusion that seemed to help some. I can tell the difference is my chronic severe pains versus the RSD pain because of the burning feeling as if you are literally on fire. You would think ice would help but no way!!! Ice made it hurt a lot worse.
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!
I will try to keep this clean but this new law has had me angry since it first took effect. I have spoken on this issue before but since recent issues occurred I want to touch base on it again. If you are not familiar with the law (I don’t know the actual name of it), it is the law that anyone on certain tier pain medication must see a doctor face-to-face every month or two for refills and take a drug urine test. So basically it makes us who actually need pain meds for a better quality of life feel like criminals.
What makes me so angry is the fact Lyme patients with anything Lyme related do not get those Lyme related things covered (medical visit, meds, treatment..). Those of us like me with latest-stage neuro Lyme who are bedridden and homebound must still be forced to go visit our doctor who prescribes these pain meds versus just clicking “refill” like we used to. So even though the pain meds may be covered and cost $5 well the 15 min doctor visit cost $375, the car ride cost $20+ in gas, the vomiting all the way up and down the freeway… You get the picture. The meds end up costing a lot of moment and days of recouping and doctor nor the government give a damn as long as they get a profit.
I was told I have to come in before the 27th and make an appointment or I can no longer “legally” have my pain meds I’ve been on for 15+ years. So they will let us withdrawl or go without them in so much pain we are crying and suicide is on our mind because of the severe pain? I am still healing from my swollen brain and can’t really be in a car, I have an IVIG infusion which will wipe me out and most likely cause the swelling to come back in the next week. I hinted how I cannot leave the house at this time but I’m told by law I must make an appointment and see the doctor asap or I lose my refills.
So because some choose to abuse pain meds! steal them or sell them, the literal pain sufferers have to suffer and pay large amounts of money due to this new “law”. The people that make these laws don’t think or use common sense. There are a million better ways to crack down on pill abusers or pill pushing doctors but this law is not the answer. The reason I am upset is because I’ve gone without pain meds before while switching doctors and my pain was so severe I can’t think, I just lay there crying and nothing else seems to help. Ketamine infusions were helping me but UCD refuses to let any “outsiders” in even though I am an insider. I’ve tried everything and I was at my last resort with ketamine IV. I have a great pain managemt doctor, natural pain meds…etc.
The only meds that help my body are Norco and morphine (since fentanyl patches burn my skin) and I feel like an outlaw just getting them filled. We are forced to make an appointment to get these pain meds refilled yet when we are at the appointment the doctors always say “you are only here just to get pain meds hmmm I don’t trust you”. It’s like the twilight zone where you just want to say “okay what’s going on here?”. We are too weak, mentally drained to even think or speak (not because of the meds) but they look at us funny as if we are exaggerating our pain or symptoms. Then make you pee in a cup to see if you have been overdosing the recommended amount.
I do agree that there are too many people given pain medication that do not need them at all and there are too many abusers. But I don’t agree on making bedridden people battling for their lives to have to get in a car and drive for hours to get medication. Especially us Lymies who have to pay out of pocket for a doctor visit. I bet they think it’s no big deal as most non-Lyme patients doctor visits are actually covered and their doctors are near by. I hate to see what law comes next.
(Feeling very feverish & worse so I’m distracting myself with a blog post)
Creamy Hummus Recipe
- Garbonzo Beans (AKA Chickpeas – 1 can)
- Tahini (most important ingredient)
- Olive Oil
- Garlic Powder (fresh garlic makes it bitter but can be used)
- Ground Cumin
- Salt & Pepper
- Seasoned Salt
- Fresh Thyme (English thyme or a citrus flavor thyme works best)
- Mediterranean Basil (optional)
- Measuring Cup
- Food Processor (blender may not work as well)
How to prepare:
Open and drain one can of garbozo beans (also known as chickpeas) into a strainer in the sink, rinsing the beans with cold water. Move beans to a bowl. Get your food processor ready then add 1/4 cup (or a bit more or less to taste) of Tahini (a paste made from seasame seeds) to the processor. Next cut a fresh lemon in half and squeeze each half of the lemon into the strainer sitting on top of a measuring cup to keep the seeds out. Use the spatula throughout the whole process to keep it creamy.
The lemon is the key to the hummus flavor and add as much as you like or dislike. You want a citrus, tart burst of flavor so use at least one whole lemon or more. I used one lemon in my recipe and added all my spices to the lemon juice and stirred together before adding it to the Tahini in the processor (lemon juice mixed with seasoned salt, garlic powder, salt, pepper, cumin, paprika). Add a 1/4-1 teaspoon of each spice and taste to see if you need more. Blend or pulse the Tahini and lemon juice together until you have a creamy paste. I don’t use fresh garlic but you can, fresh uncooked garlic can be really bitter.
Next I added half of the garbanzo beans, a tablespoon of fresh thyme leaves and 1/2 teaspoon of Mediterranean basil into the processor with a tablespoon of olive oil then blended until creamy. I added the other half of the beans with another tablespoon of olive oil and blended until creamy. Takes 30 seconds to a minute to make creamy. Remember to keep using the spatula to scrape off the sides each time you blend. Next add a few tablespoons of water into the hummus in the processor then blend to thin out the hummus a little.
Now place the hummus from the processor into a bowl you can eat from then put in the refrigerator later for leftovers. Maybe a decent sized bowl with a cover/lid or if you don’t have a lid on the bowl use plastic wrap to store it in the refrigerator. With the hummus in the bowl add a drizzle of olive oil over the top wth a dash of paprika if you like. Adds color and a hint of a smoke. I added a pinch more of salt. Having POTS/chronic dehydration and needing a lot of salt, I used more salt than most and added hymalian pink salt. You can eat hummus with pitta, pitta chips, saltine crackers, tortilla chips… It’s up to you. Enjoy.
*Remember to always make things to satisfy your taste buds or diet so you can substitute in this recipe. I love lemon amd salt so I added more and you might want less thyme than I used or leave the thyme and seasoning out. Have fun with it. It’s easy to make and healthy.
For those who do not like prescription medicine maybe medical marijuana (mmj) can help you. I have tried marijuana when I was younger but never thought years later it would be helping me medically. Over the past 5-6 years of being home bound I have tried a ton of prescriptions and pain meds. I am/was taking medication they give to cancer patients during chemo to keep them from vomiting. Those meds didn’t seem to help me and they cost a lot of money even after insurance covers it. I was vomiting after every meal, daily for years. I was losing weight, had zero appetite…and hundreds of symptoms from all my illnesses.
Below I will list what mmj has helped me with. THC products are the “illegal” ones without a card or not in a legal state. CBD only products are legal in any state and are made with hemp plants. There are “illegal” plants with high CBD & THC and that is what works best for me.
What should you use if you get your medical marijuana card or get a hold of some? Well there are different strains and different ways to take marijuana so experiment, start slow with little amounts until you find what your body likes. What I found was best for me was indica, with higher THC%, Highest CBD% I can find and I like the edibles the best. I will smoke it once in a while. There are many ways to get your intake but I won’t go into that. I use chocolate bars, smoke buds or use mmj honey sticks. The chocolate bars have a pretty big hint of mmj in the taste but it tastes just like a Hershey bar. The honey sticks you can mix in your tea at night to help you sleep.
What MMJ Has Helped Me With
- Sleep – insomnia & CFS battle each other but mmj honey sticks helped me get some much better sleep and REM.
- Appetite – mmj gave me my appetite back, I lost a lot of weight and was thinner than I’ve ever been, even from high school days! But to get your appetite back you need mmj with THC in it so hemp plants or CBD only product will not work.
- Pain – mmj doesn’t work miracles for pain but if you get the right strain and highest CBD% it can help take the edge off the pain for a while. Seems to only help me 15min up to an hour each dose.
- Vomiting – one of the biggest things mmj has helped me with and it worked better than any expensive RX. Again you will need to find what works best with your body highest CBD count.
- Depression – I feel more alive, happy and more social when I take mmj. The THC will help the most with this issue.