After treating lyme and being fairly well for 7 years, I feel worse than ever now. I just honestly cannot live this way anymore. And i refuse too. I feel worse than I did when I was bedridden for a year when first getting hit with the lyme bacteria.
I'm going to keep this short as I have this terrible depression, brain fog, am too sick to even type this, and a 5 year old to try and play with. Thankfully, but not luckily, my mom is a huge help and has been taking care of him mostly, but I try my best to be at least present.
I have been sick now for almost a year. I am looking for any advice,treatment ideas, and opinions on what tests I should ask for as I have an appt with my llmd and primary soon.
I'm convinced these new sx is not lyme, but something else that lyme may have caused. I just don't know what. I have seen MANY different doctors and they don't know either.
Arrythmias, heart palps, heart symptoms, seizure like feelings, stroke symptoms, and heart attack symptoms began first.
Then excruciating pain in liver and back which lasted for 2 months was next. Other than a lesion, an mri and endo showed all was fine. My period comes every 6 weeks instead of 4 now. Hair on legs stopped growing for a couple months.
I went from having not one single visible vein on my body to being covered in hundreds of them within a month. (Even have spider angiomas and lots on the bottom of my feet)
None of my medication works like it used too. I either have an adverse reaction or a very minimal one.
Then muscle pain in random areas and weakness in one leg and hand sometimes.
In the last 2 3 months my vision in my left eye has been failing and now has failed me for good. It started w night vision issues, progressed to blurry and double vision, everything's dimmer, n finally I lost nearly half of my vision in that eye and it's extremely difficult to see and focus.
Then i Developed severe worst headache of your life type migraines that come and go. My feet hurt (where my toes meet my foot)
I have stroke symptoms once a week and am either praying for death or in the er for the 3 hrs it lasts, pretty constant neuropathy. By this I mean my heart pounds, my left side tingles and numbness,
I have a terrible headache, dizzy, feel like I'm in between worlds almost, and am also between a frantic anxious type mood to a can't even move my eyes during that time and just stare at the ceiling whole dealing w these sx which last between 1 and 3 hours
In the last two weeks I have lost my appetite, developed pain where my right kidney is (front and back) have severe hot flashes and worsening of pain after trying to eat.
Also have somewhat painful, red streaks going down one of my lower legs. I'm sure I've forgetten a lot but I will edit later after I put my son to sleep.
Again is there anything I should/can do? What tests, if any might help?
And I did come back with a speckled 1:80 ana but doc thought nothing of it and did no further testing.
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(breaking this up for easier reading for many here)
[ 02-13-2016, 02:35 PM: Message edited by: Robin123 ]
Posted by mjo (Member # 7876) on :
OMG! I am so, so sorry you are this ill! This is a terrible way to be living.
I am no doc but most of your symptoms sound like Bartonella to me. And I am guessing you have coagulation problems too.
Anyone else with advice?
Posted by TNT (Member # 42349) on :
BARTONELLA!!!!!
Get a Galaxy test kit ASAP and get blood sent off BEFORE starting back on ABX (it increases the chances the test will pick up the bugs).
Wouldn't hurt to do an IgeneX Bartonella FISH test, too. Besides those tests, do whatever other tests your LLMD recommends.
I honestly don't think this is something the lyme caused. I think you got infected with Bartonella. You have CLASSIC symptoms!
Posted by Lymetoo (Member # 743) on :
Please find another doctor .. one who will treat you for possible bartonella.
Posted by HK (Member # 45290) on :
Thank you two. I don't / can't post much because I'm too exhausted from being this sick. But really, to anyone w advice, I really appreciate it. You are the only ones I can lean on when I myself have no voice. Esp to those physically around me.
Bart attacking my immune system? After all these years of being fairly healthy? Hmmm idk but I will order the kit!
The symptoms I have are all to the extreme. My stroke sx, heart issues vascultitis, weakness ect ect. And I'm positive im having multiple mini strokes a month.
Oh Also forget to mention when I first became Ill I had and still have trouble swallowing.
i used to take so many pills, so many antibiotics, so many herbs, vitamins, and supplements without a care in the world, but now I'm afraid. esp of abx. Everytime I take something I have a bad reaction. Or no reaction like I said.
Also am always freezing. I stay in my room with the space heater on 80 with 2 sweaters, 2 sweats, a blanket and am still cold.
Posted by HK (Member # 45290) on :
Okay I will ask my docter about it. Are there any links here with information/symptom lists /treatment protocols
Posted by TNT (Member # 42349) on :
quote:Originally posted by TNT: Wouldn't hurt to do an IgeneX Bartonella FISH test, too. Besides those tests, do whatever other tests your LLMD recommends.
...And a Fry Bartonella smear. I feel this one is more important that the IgeneX FISH, but I would do the FISH too if you can afford it in addition to the other tests.
Posted by TNT (Member # 42349) on :
My second post may have been confusing.
What I'm saying is do a Galaxy test and a Fry smear for sure. If you have enough funds, consider doing an IgeneX Bartonella FISH as well.
Before commencing ABX if possible.
Posted by mlg (Member # 35383) on :
Don't give up. I think it is proto bug. Bug you can fight it. I would do zithro if funds with Mepron if not rotate with Artimisinin and Crypto. Blood thinner like heparin. Bouluke also.
Juice, probiotics, infrared sauna but make sure to take something herbal or homeopathic to cleanse the kidneys. Also juice a lot of cucumber it cleanse the kidneys.
Then rotate with anti-parasitics like Dr. C and Dr. K recommend. Dr. C protocol is in here. Oil or oregano is good.
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(breaking up the text for easier reading for many here)
[ 02-13-2016, 02:37 PM: Message edited by: Robin123 ]
Posted by me (Member # 45475) on :
I'm so sorry you are going through this. Keep fighting. I will pray for you and sent positive vibes.
Posted by Eight Legs Bad (Member # 13680) on :
I'm sorry to hear you are suffering do much. You wrote:
"Then excruciating pain in liver and back which lasted for 2 months was next. Other than a lesion, an mri and endo showed all was fine."
What type of lesion? Do you mean a lesion in your liver? What details did they give you about this lesion?
It's not acknowledged at all by the mainstream buyt it has been proven that Borrelia can infect the liver. However neither I nor any of us here can diagnose you. Try to write down all your symptoms ina concise list before visiting your LLMD, as if you are feeling very bad on the day you may forget something important.
In the meantime, if you get a return of chest pain or have trouble breathing please visit the Emergency Dept immediately. And even if you don't, if your appointment with the LLMD is not for a while, have someone look at your leg. Without wishing to alarm you there is always a chance of a thrombosis (clot) on the leg with symptoms such as you have described.
If you have had to spend long periods in bed due to your illness you would be at greater risk of a clot, which carries the serious risk of travelling to the lungs.
Hopefully not the case, but it should be checked soon, especially if your leg has not yet been seen by the doctors who have examined you.
Try not to lose hope - if it's borrelia, the fact that you beat it before means you may overcome it again. and if it's not - you will get more help from mainstream doctors!
Posted by Blymey919 (Member # 47424) on :
HK - my heart goes out to you. That degree of suffering takes every ounce of strength from your being.
In agreement with other posts. BARTONELLA. It was a nightmare for me.
From Buhner's book 'Healing Lyme Coinfections' -
"...Bartonella organisms can be, and often are, easily transmitted by a variety of vectors: fleas, sandflies, lice, ticks, mosquitoes, midges, chiggers, biting flies..."
There's a breakdown of info about Bartonella, Bartonella species, symptoms and herbal treatment approach. Symptom specifics include: - Lymphadenopathy - Ocular difficulties - Ear involvement - Neurological problems - Fever of Unknown Origin - Hepatosplenic complications - Renal complications - Orthopedic complications - Pseudomalignancy - Skin involvement - Pulmonary complications - Cardiovascular complications - Bacillary Angiomatosis - Reproductive complications
Of note, Bartonella is attracted to the red blood cells. At the end of their life span, RBC are circulated to the spleen, liver & bone marrow - these are the main locations of Bartonella (other than the endothelial lining of the blood vessels).
Giving support to spleen and liver, as well as immune & circulatory system is super important with Bart.
Things like fresh lemon in water, teas of Red Clover, Nettle and Dandelion will help until you begin treatment (& during treatment). Also Milk thistle caps or tincture. Additionally good to regularly include the following in your diet - brocolli, dark leafy greens, garlic, ginger, tumeric, lightly cooked food, broths and soups.
Good idea to avoid ice, chilled or cold raw foods, dairy, gluten, sugars, coffee, alcohol and fried foods.
All the best to you and home you find some relief.
Posted by poppy (Member # 5355) on :
bart and liver lesions
Posted by Robin123 (Member # 9197) on :
For eyes, you could try drinking mangosteen juice, an anti-inflammatory juice. I just have Lyme, and it stops my eye symptoms, which included beginning blurring vision.
I like the Mango-Xan version, as it's the most tart. I drink around an ounce a day. You can find mangosteen juices in the health food store and online.
I had brain fog, got my thyroid levels checked - TSH and T3, was found to be low thyroid, went on Armour thyroid and my brain fog ended. I feel very present to my environment now. It means better metabolism is happening.
I think a lot of the symptoms you're describing here sound like Lyme symptoms - muscle, nerve, heart, brain fog, anxiety -
I like taking capsules of turmeric - it's anti-inflammatory and greatly takes down pain in muscles and joints. I get it in bulk at the health food store and dip 00-size empty capsules into it. I take one in the am and pm. I don't think you can OD on it.
Also re muscle pain, are you taking magnesium? It can ease muscle spasms.
Re trouble swallowing - that could indicate that you have a subluxation of the C4 or C5 vertebrae in your neck - ie, the out-of-alignment position can put pressure on the nerves/muscles involved with swallowing. I can correlate my head symptoms with which neck vertebrae are out of place.
My chiropractor fixes any swallow problems for me. You can see a good chiropractor for that eval.
Anything I or we say here are just our experiences/ideas. You would need to get yourself checked out by competent practitioners.
[ 02-17-2016, 02:29 AM: Message edited by: Robin123 ]
Posted by HK (Member # 45290) on :
Hey everyone.
Blymie thanks for the info (: I seem to have every one of those disorders.
It's just very strange because when I first got sick, the only sx I suffered were exteme fatigue, depression, anxiety as well as very minimal brain fog. But the anxiety abd brain fig were much less severe and just different.
Its hard to explain but I didn't feel like I was ACTUALLY dying. Now I do. It feels like my brain is shutting off . my heart and nervous system goes so out of wack causing every stroke sx minus the facial droop.
If there's a disorder out there, I have it. Im having major complications w my eyes, ears, heart/vascular sx, muscles, brain, mouth, stomach, skin, throat (have had a sore throat since the summer)
Thanks im working on a diet plan which should be easy since I lost my appetite boUT a month ago.
8 legs. I believe my (small at 0.7 cm) liver lesion was a result of a half suicide attempt/half I just wanted to sleep. I took 120 tyl pm and about 20 fioricets within a 3 day time span.
The reason I believe it was due to this event is because a month or so later is when I started experiencing excruciating back and liver pain, spider veins on inner arm and lots more veins popping out everywhere, and meds were affecting me even more adversely or not at all.
I will be seeing my llmd in about a month.
I have a bunch of zithromax which he had given me about 6 months ago at my last appt. Should I take this now? What do you guys think? I'm desperate. But scared of taking abx now since I'm now sensitive to everything.
As for the thyroid test, I believe the hospital ran the test. Aren't they unreliable though? Is there a particular test I should ask for ?
Thanks !
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(breaking up the post for easier reading for many here)
[ 02-17-2016, 02:28 AM: Message edited by: Robin123 ]
Posted by HK (Member # 45290) on :
Oh and the lesion was anterior and hypodense. I had a cat scan which showed it aND them a follow up mri. The gastro didn't show me the mri results, as I was worried it was growing or there were more developing, but said everything was fine.
Will milk thistle or nac be beneficial as my liver enzymes are very low, alternating between 21 14 and 14 12
Will respond to pms soon.
Again appreciate all your advice!
Posted by HK (Member # 45290) on :
Tnt do I order the galaxy test myself?
Posted by TNT (Member # 42349) on :
quote:Originally posted by HK: Tnt do I order the galaxy test myself?
HK - Milk thistle has been used to detoxify the liver and even help liver cells regenerate themselves.
Studies confirm that milk thistle can protect liver function, prevent liver damage, and normalize elevated liver enzyme levels. The later definitely occurs with Bartonella.
Also per your thyroid Q, traditional thyroid testing just checks T1 levels. Particularly with Lyme and if thyroid-related symptoms present themselves, a full thyroid panel should be performed. A LLMD or thyroid specialist would know what blood tests you would need.
I tested 'normal' for years before finally receiving a full panel test, only to learn I was hypothyroid - actually have Hashimoto's disease (an autoimmune thyroid condition).
Posted by delljen (Member # 25090) on :
Bartonella no question.
While it would be great to get proper testing done we need to help you live though this crisis.
First, know that the depression you are dealing with is Bartonella. I have been fighting Bartonella and it is my main "on top of the list" infection for over five years and I am able to stay at 80-90% function daily and you can too.
I take two different antidepressants and they have saved my life multiple times. They keep me out of the depths of despair when Bartonella rages.
Second, you HAVE to thin your blood and do it as soon as you can. When they take you blood at the hospital I'll bet it's thick and slow. It still happens to me still on occasion(bartonella) and if it does I up my Bolouke for a while. Order some Bolouke from amazon now and get it into yourself slowly ramping up but seriously, do it now.
Third, call you LLMD and move up your appointment. Tell them your story and if nothing else get on the cancelation list. I hope you have a true LLMD that will treat Bartonella throughly because, trust me, yours sounds out of control.
I agree with some of the posters above that parasites and the protomyxzoa are also very likely part of your problem and should absolutely treat these as a priority.
Your liver and your kidneys will feel a bit better when you start to thin your blood and your body doesn't have to work so hard. However, adding a good liver detoxifier like Now Brand (amazon too) is also important.
Also things like castor oil packs nightly to help your liver detoxify itself. IV glutathione has also helped my liver it may be worth a try also.
Your kidneys need enough water to function properly. Drink water. Also help them with some of the ideas posters listed above.
You need full Bartonella treatment as soon as you can get it. Call around to other LLMD's if you need to. A three antibiotic regimen that includes either Rifampin, Mycobutin, and or Bactrim is a must. Don't leave until your LLMD agrees to at least ramp up to three antibiotics.
You may herx you may not but be prepared. Your strain may respond to some of the Bartonella antibiotics and not others you should work closely with your LLMD until you hit the right combo. I also incorporate naturals into my regimen now but you need to get your Bartonella load down first.
Try everything in your power to stop listening to your depression talking. It can be so hard but I promise its the Bartonella talking.
When you start to take steps and you put together a comprehensive plan you will feel Hope which is the most important thing of all. You can do this. Everyday remember that your child needs you. That thought has gotten me through many a dark day. Never underestimate the power of love.
Posted by hopingandpraying (Member # 9256) on :
So sorry you are going through this. I think you really need to see a new LLMD.
You asked if there are treatment protocols. Here is a link for Dr. B's Guidelines (look at the Table of Contents where "Treatment" is listed):
Please don't give up. Keep fighting for yourself and your little one. You will get better with the right treatment.
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online www.klove.com by clicking on "Listen Online" on their homepage (upper-right hand side) or you can find a station near you by going to "Find a Radio Station" under the photo/video on the homepage.
Your life most certainly matters, After all, you are "fearfully and wonderfully made."
Prayers and blessings to/for you on your healing journey.
Posted by mulelover31 (Member # 6266) on :
I am so thankful you posted this. I might now know what is wrong with me!
I started treatment for lymes about 12 yrs ago. Dr. C. I was much better but last yr. after another tick bite plus others (I work outside) I started getting worse again. I have almost all of the symptoms listed. Some worse than others.
This yr. I started with the heart things and had a bunch of test in Dec. Last started the lots and lots and lots of spider veins and a rash on my leg. The rash is back again since 1st part of Dec.
I have been on 4 antibiotics since Dec. and am still on one. This time it is 22 days on it. Yesterday it started itching back again and little blisters appeared. However the worst for me is the rages and aggressiveness I feel sometimes.
I thank God so much everyday for Jesus who has helped me stay sane and not kill myself! I am so thankful to be able to come on here again and see yes others are like me too I am not nuts! Well maybe a little but I was like that before.
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(breaking up the post for easier reading for many here)
[ 02-17-2016, 02:23 AM: Message edited by: Robin123 ]
Posted by HK (Member # 45290) on :
Thanks guys, I'm in such an I'm in such an awful space right now,
Okay I will pick up more milk thistle. Thanks!
Dell - yeah I know how it feels :/ glad the meds are helping tho! Thanks so much for your words. It all helped a lot.
Mine is entirely intolerable right now and I can't take antidepressants because like I said medications aren't working anymore.
Or I have allergic reactions. Severe Tongue tingling comes on about 5 minutes after putting meds in my mouth followed my other allergy symptoms including throar swelling with since.
This is the absolute worst as meds were the only thing keeping me sane and happy..alive. and now I can't even take abx when I need them the most. Well I don't think anyway. I'm too scared to try right now.
I'm just tired of the waiting game. I don't think I can wait aNY longer to feel better. Tired of fighting. No not tired. So unbelievable exhausted only a few on here could probably relate. Hope is gone.
I've tried everything in my power to be happy and healthy and it's all failed. I've quit once, one day w the suicide attempt.
I really thought 120 tyl pms, 20 fioricets, and some reg tyl would do it, but nope. I used to tell people..in here, my parents, docs that I wasnt aware of how dangerous tyl is and just wanted to sleep. But no. I really meant that i wanted to sleep forever.
I'm trying to be stronger and less selfish w my choices bUT it's not easy with my diseased brain and loss of so much health in a short time. But im doing it. I'm here Thanks for the encouragement. Every little bit helps (:
I dont have thick blood. Or high cholesterol. My blood is thin and BP low.
I'm a little nervous about these new sx which have been going on for about 2 weeks. Well Not nervous. Just fed up and in pain.
The severe upper back and flank pain isnt getting any better. Now the pain is sharper and on both sides of front and back where my kidneys are.
I have only been able to eat a yogurt or bowl of oatmeal a day during this time bc I didn't want worsening of sx... nor was I hungry.
Well tonight I felt suddenly felt starved which excited me since I haven't been hungry. so I took the risk and had a couple burritos and a pastry for dessert.
10 minutes later the pain was intolerable. Exhausting. Idk if it's my kidneys. The pain is right where my kidneys are, bUT I have no burning, fever, bubbles, or discolored urine.
Just what I mentioned, hot flashes, upper back pain, and not urinating much at all. Also 5 small petechie type bruises just showed up on my arm.
I'm sick of these symptoms switching up on me. And to such an extreme level. It's like every organ is failing one by one.
First my heart w terrible heart attack sx, tachycardia n arrythmias were diagnosed.
Then my muscles Then my brain w the stroke symptoms and vision loss, diagnosed with macular degeneration.
Then my liver w my body unable to process medication and a lesion found. Then stomach and back aches. Now my kidneys? Am I dreaming? This is inhumane.
Well not eating anymore. At 5'8 120 I don't want to lose any more weight, But the pain isnt worth it. I'd like to see a Dr this week but too tired to even call and make an appt. Idk...
Again thanks. I'll respond more when I can. I'm tired
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(breaking up the post for easier reading for many here)
[ 02-17-2016, 02:25 AM: Message edited by: Robin123 ]
Posted by HK (Member # 45290) on :
Mule (: hey. I'll respond to your message in more detail shortly, but I'm very very glad you feel better knowing youre not the only one. Also grateful that we can relate in some ways. Hopefully in the future we can discuss symptoms and treatment plans.
Posted by Lymetoo (Member # 743) on :
HK.. Consider candida in the gut for the misery after eating burritos and a pastry.
Are you going to see your LLMD soon?
Posted by Robin123 (Member # 9197) on :
Hi - this is for all posters here - people really do want to help, but many cannot read large blocks of type. Best if you break up your typing into 1-3 lines max, so everyone here who wants to can read what you're typing and respond!
I found this article on the European site. Seems very likely that this is what's going on with me.
Posted by HK (Member # 45290) on :
Thanks for the reminder Robin
Lymetoo. I will be making an appointment this week (:
And I juiced for a month, have fastest for a few weeks. I really don't know of any more effective ways to heal my back and kidney pains.
Posted by bluelyme (Member # 47170) on :
Hk ..my thoughts and prayers go to you...are you treating ? Nac may help liver after Tylenol bout...glutithione ..?
What did llmd say...can you do herbals ?...many things may still help...our suffering is not without reason ...
If no one has suggested it yet I would suggest getting tested for heavy metals, and a Twin Lab urine test for mold mycotoxins to start.
I agree it sounds like Bart, but there might be other underlying issues for why you are not making progress, but getting worse.
Mold and heavy metal could hurt the immune system more.
Posted by still winning (Member # 44439) on :
HK
Just thinking of you. Had (have) lyme since 1990.
Just giving you my support. You know we all care and are concerned about you. So just keep going.
Still Winning
Posted by sutherngrl (Member # 16270) on :
Don't know if this will help, but years ago before my Lyme diagnosis, I suffered many of the same symptoms you have. I had 3 liver lesions and had liver pain. The lesions were found to be benign cyst by mainstream doctors. I ended up having 2 CT scans at two different hospitals.
I was so ill and believed I was dying for 2 years. Found a LLMD and I was able to do low dose treatment. Started out higher doses, but I responded better to low dose. It took longer, but I got well.
I'm telling you this, so you won't give up. As hard as it seems, and as far out as it seems, there is help out there. Lyme Disease and all its co-infections can affect every bodily system and it seems overwhelming. Hang in there, because once you see a LLMD you will feel hopeful. A good LLMD will design a protocol to fit what YOUR body can handle.