I'm at my wits end. My head pressure seems to be getting worse. I had a couple times today trying to walk around I felt lightheaded and my legs got very heavy. It was scary.
I am completely sensitive to sunlight, eyes tear constantly, nauseated/dry heaving, fatigue is terrible, off-balance.
I need some things ruled out and if this is the only way, so be it. My life is a livin' hell right now. Sometimes you need to do what you need to do to survive. If there is increased spinal pressure or infection there, it will never be found w/o this test. I have a bad feeling where things are headed if I don't rule it out. Posted by hadlyme (Member # 6364) on :
Since I just went through all this, I would recommend one too. Just so you have peace of mind or if there is something else going on.
Does it hurt to walk, as far as each step feeling like your spinal fluid is infected feeling? Mine did with all the head feeling like it was swollen beyond belief!
Vomiting/dry heaving and the sensitivity to light was something I had too.
Do it.... get a spinal tap. Don't think again about it. This has been going on too long for you now and hasn't gotten any better.
This is my opinion... just saying.... you know the best what is going on in your body.
Posted by tick battler (Member # 21113) on :
All of those symptoms sound very much like babesia to me. Did you herx when trying babesia herbs/meds?
tickbattler
Posted by seekhelp (Member # 15067) on :
Tickbattler, I've taken some Malarone over the years (max of 4 tablets daily), a teeny bit of Mepron (though not tolerated well - major stomach problems).
Coartem for two 3-day courses. Reacted pretty violently to Coartem in form of racing heart, fatigue, anxiety out-of-control, very elevated BP.
The Malarone was not intolerable by any means, but never results in big success.
The one thing I have not tried is Artemisinin yet.
Completely unable to take A-Bab formula as my throat tightened immediately on 1/2 drop. I was afraid of allergic reaction to one of the herbs in it.
So do I herx? Not sure at times as my illness is always there and I never know which day the floor will fall out underneath me.
The head pressure just never goes away. I can't drive due to it. Some days, it'll lessen, but ALWAYS there. My ears pop endlessly. Brain fog as well. Basically I feel 'removed' from myself due to discomfort of these symptoms. My personality is gone. I can't concentrate anymore and it concerns me a ton. I feel like I'm declining.
Hadlyme, I have to agree. Sometimes it's unpleasant, but living in the dark is silly if avoidable. It's hard to sleep at night never understanding what's wrong and why your life fell apart. I realize there may be no answers from it, but if it's the only way to diagnose specific illnesses/spinal fluid pressure, what choice does one have? Four years is a LONG LONG time.
The other thing I sometimes suspect is my gallbladder as the HIDA scan showed less than 15% ejection fraction twice. No stones. I have had stomach issues for a long time too that wax and wane.
Posted by Bugg (Member # 8095) on :
Seek-
I'm so sorry you're suffering. I wish I had the magic answer for you. Your symptoms sound like a really horrible neuropathy. I know I sound like a "broken record" on this board but are you absolutely certain you are getting enough sublingual B12 and/or shots of B12 on a consistent basis. If you have neuropathy, it can take months for B12 to have its impact and reverse your symptoms...I've just been going through this my self...
So many of your symptoms sound like your nerves don't have enough B12 to help them heal: the headaches, the anxiety, the fatigue, the brain fog....B12 not only helps neuropathy but you need it to produce red blood cells...Red blood cells carry oxygen to your body parts...If you don't have enough, you can become dizzy...lack of balance..
I'm kind of surprised your vision isn't going out of focus as well as times...
I'm assuming you don't have pernicious anemia (where you're positive for anti-parietal cell antibodies)?? This is where your body's own immune system attacks its parietal cells which produce intrinsic factor. You need intrinsic factor to absorb B12 from food. ABX interfere with the absorption of B12...I'm very concerned a number of people on this board need B12 more than they realize to help their nerves heal...
Also, you need B12 to make neurotransmitters (serotonin/dopamine)..
Finally, if you've "tried" B12 and it makes you more fatigued/sleepy, THIS MEANS YOUR BODY NEEDS IT AND IS TRYING TO HEAL ITSELF...I'm concerned many lyme patients give up on B12 because it initially makes them so sleepy and can even episodically increase brain fog....
Hang in there, Seek
Posted by kellyjk4 (Member # 19731) on :
seek, so sorry you are going through so much. I know the last few years have been really hard.
I think that you should have the spinal tap done, even if the only result is that they can rule some things out and give you at least that knowledge.
In 1992 I had two spinals taps performed. The first one came back contaminated, so the doctors had to do a second. It turned out that I had meningitis, so in my case it was not only worth it, but it saved my life. As long as there is a valid reason for doing it, a spinal tap can be an important diagnostic tool.
The lightheadedness and heavy-feeling legs are concerning, as these can indicate a circulation problem. If you haven't had your blood pressure checked lately, I would suggest you do that as well.
I hope you find some relief soon.
Posted by seekhelp (Member # 15067) on :
Bugg, thanks for your insight. Everytime my B-12 has been checked, it has been high normal and in some cases way ABOVE normal. Does this rule out this form of anemia? My homocycsteine levels were always normal too. I consistently have a moderately elevated free plasma hemoglobin test which indicates RBCs are bursting early and releasing in the plasma. My RBC hemoglobin levels are never low (perfect mid-range). I do take sublingual B-12 tablets (2,500 mcg daily)...they don't help really.
Kelly, wow I guess that test has validity sometimes. I'm glad it saved your life!
My blood pressure is always elevated to a degree. I'm on meds. It's usually 140s over mid 90s. Been higher before. My pulse jumps all over the place. Today it spiked to 117 for no reason. It's usually low 80s.. Very odd. Obviously I have a LOT of issues.
Posted by pab (Member # 904) on :
You talk a lot about head pressure. Do you have a headache? If so, where is the pain?
Posted by scorpiogirl (Member # 31907) on :
quote:Originally posted by Bugg: Seek-
I'm so sorry you're suffering. I wish I had the magic answer for you. Your symptoms sound like a really horrible neuropathy. I know I sound like a "broken record" on this board but are you absolutely certain you are getting enough sublingual B12 and/or shots of B12 on a consistent basis. If you have neuropathy, it can take months for B12 to have its impact and reverse your symptoms...I've just been going through this my self...
So many of your symptoms sound like your nerves don't have enough B12 to help them heal: the headaches, the anxiety, the fatigue, the brain fog....B12 not only helps neuropathy but you need it to produce red blood cells...Red blood cells carry oxygen to your body parts...If you don't have enough, you can become dizzy...lack of balance..
I'm kind of surprised your vision isn't going out of focus as well as times...
I'm assuming you don't have pernicious anemia (where you're positive for anti-parietal cell antibodies)?? This is where your body's own immune system attacks its parietal cells which produce intrinsic factor. You need intrinsic factor to absorb B12 from food. ABX interfere with the absorption of B12...I'm very concerned a number of people on this board need B12 more than they realize to help their nerves heal...
Also, you need B12 to make neurotransmitters (serotonin/dopamine)..
Finally, if you've "tried" B12 and it makes you more fatigued/sleepy, THIS MEANS YOUR BODY NEEDS IT AND IS TRYING TO HEAL ITSELF...I'm concerned many lyme patients give up on B12 because it initially makes them so sleepy and can even episodically increase brain fog....
Hang in there, Seek
Oh wow I'm so glad I read this! I have severe peripheral neuropathy where I cannot feel much on my right leg, especially from the knee down. I started B 12 injections 3 weeks ago and boy I'm sleepy! I used to get 3-4 hours a night interrupted sleep. Now I sleep 10 hours!! I kept telling my husband that I thought B12 was supposed to give me that boost of energy but instead I'm so sleepy! I was just about to throw in the towel b/c if it's not helping I don't want to endure the pain. But now that I read this I will give it more time. Thank you!!
Posted by scorpiogirl (Member # 31907) on :
seekhelp
what are you trying to rule out w/ the spinal tap?? I had it done and it was not a big deal at all. However it was a pretty useless test in my case. Everything turned out normal.
I know this is hard not knowing what is causing all the symptoms thus not knowing how to treat. Just a vicious cycle! Posted by Robin123 (Member # 9197) on :
[QUOTE]Originally posted by seekhelp: [QB] I am completely sensitive to sunlight, eyes tear constantly, nauseated/dry heaving, fatigue is terrible, off-balance.
Hi - guess you have to do what you feel you need to do to answer any other diagnosis questions.
In my experience, when the atlas vertebrae is out, it can cause eye tearing and off-balance.
When the C2 vertebrae is out, it can cause nausea.
Sooo, when I get my neck adjusted by a good chiropractor, these symptoms stop, for me.
Lyme affects the neck, via brain inflammation/cranial nerve inflammation; the muscles get tight and pull on the bones.
Just wanted to mention another possibility for the symptoms you're describing.
Posted by tick battler (Member # 21113) on :
I'm also wondering what a spinal tap will show?
I know I always bring this up, but have you absolutely ruled about babesia as a cause? Have you done recent testing for microti and duncani through Igenex? Two of my kids didn't test positive for babesia until about 6 months into treatment. But the one with the major babesia symptoms did have a positive test the first time.
Your severe reactions to babesia meds/herbs really make me suspicious that you were herxing. Also - my kids and husband did over a year of Mepron/artemisinin and couldn't get rid of the babesia. I feel it doesn't do much for it.
Have you tried Agrisept-L? (GSE). Might be worth one last try before the spinal tap. Just a drop a day and working up slowly to see if there is any reaction.
tickbattler
Posted by Lymetoo (Member # 743) on :
I agree with tickbattler, but fully support doing what you feel you need to do in order to have peace of mind.
Good luck with it!! Posted by Carol in PA (Member # 5338) on :
I think the severe head pressure may be due to inflammation, which causes swelling.
You can reduce inflammation by taking magnesium, fish oil, antioxidants, and systemic enzymes.
Systemic enzymes have made a dramatic difference for me. They reduced the headaches and pressure so that I could think again.
Mangosteen juice is a powerful antioxidant. It has helped many people here.
I'd hate to see anyone go through the difficulties of an unnecessary spinal tap when you could reduce the pain and pressure with these supplements.
Posted by timaca (Member # 6911) on :
Seems a good idea to do a spinal tap. Drink a lot of water prior to the procedure to help ward off a spinal headache. Good luck. Keep us posted.
Best, Timaca
Posted by bigstan (Member # 11699) on :
Spinal tap no problem most likely. If I could suggest you might want to request an LP puncture under fluoroscopy.
Also, I think the best place for an LP is at an emergency room with young docs fresh out of school. One because ER's do the majority of LP puncture and two the younger doctor's the more steady the hands and fresh out of training in school working on cadavers. Just my opinion.
Mine went off without complications. No lyme showed up or ms bands. But what did show up was a high increase in CSF protein which is characteristic of LD and convinced Dr M of it.
Posted by karenl (Member # 17753) on :
My spinal tab was useless, they found nothing but I was extremely sick. I would never do it again, then they have "proof" you are not sick.
So you did not get better being away from home?
Where are you in treating parasites, they can live in the brain and cause horrible disease and will not be detected by the spinal tab?
Generally: the spinal tab can only show what the lab is able to detect. If the lab is not Igenex - no lyme .....
Ask which lab they use and how quick the fluid will be transported there before doing this procedure.
Posted by TF (Member # 14183) on :
Seek, just want to say if you get the spinal tap, be very sure to lay flat that entire day after the tap.
That means, lay flat in the car going home from the hospital. (I took a pillow for this purpose.) Lay flat all the time.
This is the best way to avoid any complications from the tap--like the headache from hell, continual leaking out of spinal fluid after the tap, and need to return to hospital for a "blood patch" to stop the leaking.
Laying flat helps the puncture hole to heal so that the spinal fluid stays in the spinal column and doesn't continue to drip out into your lower back.
Posted by Bugg (Member # 8095) on :
I agree, Seek, perhaps you should trust your gut and go for the spinal tap....
Also, if you can remember them, why don't you post on here any abnormal test results you may have received in the past...Perhaps by looking at these results others could suggest a specialist you could see...For ex, if you had alot of abnormal bloodvolume work, you might want to see a hemotologist....
If you had a lot of weird immune/antibody markers, you may want to see an immunologist, for ex....
I, and so many others on this board, just want you to feel better....
Posted by seibertneurolyme (Member # 6416) on :
Seek,
I still think babesia is your biggest problem, but I also feel like you have never adequately treated the lyme.
It is entirely possible you have meningitis, but more likely it is encephalopathy and not even encephalitis.
Regardless -- if the symptoms are getting worse then a spinal tap is probably a good idea. Hubby has had 3. The 2nd one he had mildly elevated protein and everything else was normal -- but his lyme literate LLMD considered those results significant when making his clinical diagnosis of lyme. The spinal tap results helped him get the first 60 days of IV rocephin.
Hubby continues on the larium. It seems bacteriostatic in combo with bactrim DS and 4 malarone daily. Decreased the malarone from 6 daily to 4 daily since we added in artemisinin.
The artemisinin definitely seems to do something the other meds don't -- taking it 4 days on and 3 days off. Have had to go slow as it tries to elevate liver enzymes. Have also added back IV clindamycin 1 time per day and IV flagyl 2 times per week. Hubby continues on 8 lumbrokinase daily -- found this dose seems to work best while doing aggressive babs treatment.
I think if the new doc will write it that a longer course of IV flagyl would either put hubby back in the hospital or maybe actually wipe out his babesia and other blood borne parasites.
If the fevers would stop I would try to increase his art. He started with only 2 pills daily the first round this time then 3 pills the next round and is trying 4 pills this week. Previously 6 art was too much while doing the quinine and clindamycin and malarone combo. That time I got in too much of a hurry and after a couple of rounds at 3 pills tried doubling the dose.
Many LLMD's use artemisinin as a test to see if a patient actually has babs. I think at even 1 or 2 pills daily you would know within a week if babs is the real problem. Hubby took the old dose of 3 art pills daily for 3 weeks on and 1 week off for 15 months years ago. At that time it didn't do much of anything for him. But for him art by itself is pretty useless. He needs a combo of many babesia meds and can tell quickly now if the meds are strong enough or not.
Hubby can get to the killing dose (red blood count and hematocrit and hemoglobin all decrease) but his fevers go up so it is a balancing act still. He obviously still has hidden infections that come out when he kills off too many red blood cells.
His white blood count has stayed down for several weeks now so we may be making some progress. Adding in cipro when he has a dieoff also seems to help decrease fevers.
Good luck with the spinal tap.
Bea Seibert
P.S. Hubby was unconscious when he had the 2nd spinal tap done so he didn't even know about it until later. But the third one was done as an inpatient hospital procedure. At that hospital they used x-ray guidance to see where to insert the needle -- that would be the best way to have it done if it is an option.
Posted by TF (Member # 14183) on :
I was told by the doctors in the hospital that x-ray guidance is the best way to have a spinal tap. That is what my neurologist ordered.
They said that it is generally just ordered that way if the person is obese or very old. I was neither. But, I was glad that this was the way mine was done.
So, I definitely agree that you want it done with x-ray guidance. Anything that reduces the chances of trouble I am in favor of.
Mine was done on an out patient basis.
Posted by pab (Member # 904) on :
I think seek is thinking about a spinal tap to check for intracranial hypertension (pseudo-tumor cerebri). A spinal tap is the only way to diagnose it. The doctor will check your opening pressure. If it's too high, they will drain fluid to get it to a more normal pressure.
My kids had a total of 17 spinal taps. They both have PTC and have shunts. It took them 1- 3 weeks to recover from the taps because their brain has to adjust to a new position.
Posted by seekhelp (Member # 15067) on :
WOW, lots of good feedback and suggestions here. Thanks so much everyone. It will be hard to address everyone/every comment, but here are some highlights.
My main goals of getting the test are to rule out intracranial hypertension as pab said. I also am interested in ruling out encephalitis and other TBIs via spinal fluid as well as one parasite. How much my doc would be willing to test for and if it would be covered will determine if I do it. It's gotta be worthwhile to go through it on my end.
I would definitely try to get the x-ray guidance as I'm quite overweight. I had a myleogram two years ago and got pretty bad heaviness in my legs for a week or two afterwards. I remember them changing the table position from me lying on my stomach to standing and it felt like a million pound weight was attached. Horrible.
Bea, believe me I suspect Babesia. My current LLMD is suggesting Artemisinin, but I don't think even remotely buys into how aggressive WA-1 should be treated as your hubby's physician's have. Even my old famous NY LLMD's office wasn't that intense. They were aggressive.
I also agree I didn't treat Lyme adequately most likely. I have this fear the aggressive treatment will destroy me based on my reactions. Unlike your husband, I have no one to help me if hell breaks loose. My wife is clueless about the severity of these herxes/diseases and thinks I'm a hypochondriac. She'll take me to doctors, but gets upset if I don't just pop every pill they tell me.
The truth is I never have experienced much benefit from anything to date so it's hard to be confident in anything. In 4 years, I have yet to get the ability to drive myself much, I yawn 300+ times a day and my eyes water like a fountain. It feels hopeless - like a lead weight is on my body that I can't get off. My wife would've snapped long ago.
I give credit to your husband for having the guts to go through so much.
Carol, I do take magnesium and some Vit C, but it doesn't help. i don't take fish oil or systemic enzymes. I think it's time to start. It sounds like many with my issues benefit from it. My LLMD doesn't suggest them really.
Karenl, no it was no miracle being away from my house 5 days, BUT unfortunately the cabin we stayed at is very messy. The owners are nice, but very unattentive to a clean environment. I have no reason to believe it was healthier, BUT it's better aired out in a less polluted area of my state.
I did have less head pressure there, less eye watering too. My stomach tightness, pressure/bloating made my trip tough though. Fatigue is still there. Within 2 days, my head squeezing, eye blurriness roared back. Pretty odd since the mold inspector said the home had a clean bill of health. My wife is done with all the theories and would never move. She said he was qualified and no Internet people's opinions outweigh his.
So the bottom line is I'm in a bad place. Options are few. I guess that's why I portray a negative tone too much here.
Posted by Bugg (Member # 8095) on :
Seek-
For what it's worth, I had encephalopathy from lyme that has taken years to recover from....I was SEVERELY debilitated, severely fatigued, in severe all-over pain, severe joint stiffness, could barely walk through the grocery store, my legs felt like they had run a marathon, I had severe brain fog, and really bad depression....not for a couple of years...for many years....
If I had only known then what I know now which is that it can take years to recover from encephalopathy ....BUT, you have got to get serious about understanding the neuropathy caused from the encephalopathy....When I started to calm my immune system down and also treating the neuropathy, I started to make great strides in my health....dramatic strides...that I had been unable to make after years of abx including IV Rocephin...
I went to see three different LLMDs and none of them even mentioned I might have neuropathy from encepholopathy from lyme because I didn't have classic numbness or pins and needles...my legs and joints just mainly ached/throbbed/and were stiff
When I started researching every medical text I could re: encephalopathy, that is when I finally understood most of my muscle pain, joint pain, fatigue, and muscle stiffness was actually NERVE-related....I had to try to heal my nerves...
I've been doing this and making great strides
I don't understand, especially with the eye blurriness, why your doctors don't think you have neuropathy? There are so many causes of neuropathy that can be related or unrelated to lyme....including celiac disease...pernicious anemia...autoimmune disorders...diabetes....Hasthimotos....
Might I suggest when you go for your spinal tap that you have a list of your symptoms and request to see a diagnostician as well....
For what it's worth, I've read that many people with encepholopathy will have normal MRIs and CT scans but will have abnormal SPECT scans...
Posted by karenl (Member # 17753) on :
Bugg,
I heard the word "throbbed".
This is me. I am doing better but the throbbing is still there. What did you do? You say calm your immune system? I have ANA extremely high.
Posted by karenl (Member # 17753) on :
Ok, you did a bit better in a very bad and dirty environment. But a tiny bit better - so there is a chance you would do great in a zero mold house. The cabin had wood? Are you far from Dr. R, TX? I know you are unable to drive.
Posted by seekhelp (Member # 15067) on :
Karenl, it was a cabin made 100% of wood. Carpeting 20+ years old. Couches from the 1980s. A vacuum is not an appliance used often there. lol.
I live nowhere near Dr. R. I live in MI.
Very interesting Bugg. That's really scary it took so long to recover and Abx weren't the answer.
I have been tested for almost all the conditions you mentioned Bugg. Negative for Hasthimoto, diabetes, auto-immune, B-12 deficiency, Vit D deficiency, celiac and more, but still have intense muscle stiffness. I feel like I need to stretch my spine and no matter how much I try, it never relieves. The only auto-immune marker I ever had was a speckled ANA of 1:160.
I had normal MRI, CT-scan, SPECT scan.
I begged my wife to stay at a hotel for 4 days, but she loves going to her family's cabin so I didn't get a true test in a clean environment as I hoped.
Posted by Rumigirl (Member # 15091) on :
seek, it definitely sounds like you have been inadequately treated and diagnosed all around. I agree 100%, it sounds like Babesia is a big one here. And Lyme, I'm sure, too. ANd neuropathy, too!
It sounds like you need serious help from a top LLMD and other drs, too. And working up slowly to doses that you can tolerate. And TONS of detox! I can't emphasize that enough.
Mold also sound suspicious. It's too bad your wife won't help out more. Anyone else that would be willing to help? Could you pay someone to help, if necessary?
On the spinal tap: VERY important to lie on your back for 1/2-1 hour immediately afterwards, to not even get up at all for that period, 1 hour would be best. Even if you have to be on a gurney in the hallway in the hospital (I did that, and had no problem afterwards).
I hope you get some answers and some help. Keep on trying, you have to!
Posted by Bugg (Member # 8095) on :
Hey Seek-
I want to clarify my earlier post as I don't want to "scare" you. Yes, the IV Rocephin dramatically helped my cognitive dysfunction. Afterwards, I tried many different rotations of abx for coinfections, viruses, etc and none of them made me any better. I finally decided that I needed to stop the abx. It was a personal decision for me. When i stopped them, I finally started feeling somewhat better as they were only making me feel worse.
If I had known for years that I had neuropathy from encephalopathy I think I could have felt BETTER MUCH SOONER....I had no idea of the atomic bomb of nerve issues that can be created from encephalopathy as no doctor ever mentioned this...
Seek, practically all of my post-lyme tests have been "normal" as well.
In my humble opinion, which isn't popular on this board, I think that my body went into some sort of autoimmune dysfunction which exacerbated the neuropathy....I, too, no longer have an elevated ANA...However, that doesn't mean I don't have some sort of 'overactive immune system'....
As far as I know, no one is doing studies on autoimmune nueropathy from lyme disease so how would anyone even test for this? Maybe it is just neuropathy with no autoimmune component.
All I'm really trying to say is that you had encephalopathy and it was severe there is a high probability you are suffering with residual neuropathy.... If you treat the neuropathy, you can feel better....
My symptoms of neuropathy:
extreme fatigue eye blurriness which was often commented upon by my eye doc heavy legs extremely tight muscles along my spine which felt like they needed to be pulled away from my spinal column joint pain and stiffness eventual tingles in my feet and hands (developed only in later years) muscle twitches very sore muscles extreme anxiety depression that didn't respond to SSRIs brain fog (Prior to IV Rocephin, I couldn't even read or drive a car, or write a check, didn't know my friends' names)
Posted by Lemon-Lyme (Member # 19229) on :
Not related to the spinal tap, or muscle tightness issues, but have you tried buying one or more good air purifiers and loading up on antihistamines, as a test?
I recall you mentioning that you suspected some mold issues. And I see the cabin wasn't exactly a clean test.
But an alternative test you could do at home is just set up an air purifier (decent one, not a cheapo brand) in a room, possibly take an antihistamine too, and see if you feel any better.
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