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Severe head pain > 1 year, Hypercoagulability/blood clotting?

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Posted 7/12/2024 3:07 PM (GMT -5)
Hi,


So every time I've tried any treatment I very bad reactions with worsened head pain (going on for over a year), where my temples feel extremely sore/bruised, aching, tight constriction in every tendon or blood vessels, nerves, arteries all swell and I have protruding veins, just the most sharp pain and its absolutely unbearable (similar to vasculitis). When I have googled hyper coagulation/fibrinogen pain it is very similar to what I am experiencing. Maybe mold, tick infections, etc could have caused a complication like blood clotting? has anyone had this kind of pain related to hyper-coagulation? I do have lyme, bartonella, Babesia, mycoplasma, TBRF, erlichia, mcas, mold, so im sure any of theses things could have caused that. Can anyone please tell me if you've had this pain and if it was relate to hyper coagulation and what helped you? I am in a state where I cant take anything and nothing touches the pain. I take lorazepam, Celebrex, a ton of Tylenol, Lyrica, etc.
Posted 7/12/2024 4:56 PM (GMT -5)
Have you had any dental work done?
Wisdom tooth removal? root canals?
Any bite adjustments?
Posted 7/12/2024 5:07 PM (GMT -5)
its not tmj at all I do have some cavities but I had that before this happened
Posted 7/12/2024 5:09 PM (GMT -5)
is @walkingfaith here?
Posted 7/12/2024 5:17 PM (GMT -5)
Hypercoagulation seems to be a fairly common problem with these infections. You might want to review some of the many threads where this has been discussed:

https://www.healingwell.com/community/default.aspx?f=30&m=4345835
https://www.healingwell.com/community/default.aspx?f=30&m=4345365
https://www.healingwell.com/community/default.aspx?f=30&m=4343769
https://www.healingwell.com/community/default.aspx?f=30&m=4342467
https://www.healingwell.com/community/default.aspx?f=30&m=4339015
https://www.healingwell.com/community/default.aspx?f=30&m=4331717

I found it was mainly borrelia causing this. I did get it under control by treating borrelia, however this was difficult because the herx would make it worse.
Posted 7/12/2024 5:37 PM (GMT -5)
yeah and when I google hyper coagulation pain it is exactly what mine is like "pulled muscle, tightness, soreness, swelling" but I am not sure if like I could take an anti coagulant or vasodilator to see if that helps.
Posted 7/12/2024 7:59 PM (GMT -5)
I have a friend who got blood clots and takes Xarelto (rivaroxaban). I don't know how well that actually works for this kind of clotting. (That person had repeated exposure to fleas and ticks from animals, and very likely got Lyme or Bart, but is in complete denial about it. Some people just don't want to deal with it, and let it go for years.)
Posted 7/12/2024 8:08 PM (GMT -5)
Have you tried any drugs or supplements yet to manage hypercoagulation? Curcumin, nattokinase, serrapeptase, fish oil, ginkgo, etc.?

Loads of things I have taken have blood-thinning as a side effect, and many of them helped me manage or alleviate chronic head pain. My blood was so thin when I was taking the core Buhner protocol that I lost 8 ounces of blood per day during menstruation and bruised like crazy. Since so many supplements that people take for Lyme (and long COVID and other chronic illnesses) have blood-thinning effects, I'm curious if you have tried them and if they have helped.
Posted 7/13/2024 7:35 PM (GMT -5)

Quin said...
I have a friend who got blood clots and takes Xarelto (rivaroxaban). I don't know how well that actually works for this kind of clotting. (That person had repeated exposure to fleas and ticks from animals, and very likely got Lyme or Bart, but is in complete denial about it. Some people just don't want to deal with it, and let it go for years.)


does she have head pain like in her temples or like migraines that feel like her veins, vessels and nerves are constricted ? or does she have any thing like I described
Posted 7/13/2024 7:48 PM (GMT -5)

saraeli said...
Have you tried any drugs or supplements yet to manage hypercoagulation? Curcumin, nattokinase, serrapeptase, fish oil, ginkgo, etc.?

Loads of things I have taken have blood-thinning as a side effect, and many of them helped me manage or alleviate chronic head pain. My blood was so thin when I was taking the core Buhner protocol that I lost 8 ounces of blood per day during menstruation and bruised like crazy. Since so many supplements that people take for Lyme (and long COVID and other chronic illnesses) have blood-thinning effects, I'm curious if you have tried them and if they have helped.

I cant take curcumin im scared to take nattokwinase or any of the enzymes due to my autoimmune encephalitis I have severe reactions to any kills especially bio film. busters

what blood thinning things helps your head pain ?
Posted 7/13/2024 8:59 PM (GMT -5)

sarah r said...
does she have head pain like in her temples or like migraines that feel like her veins, vessels and nerves are constricted ? or does she have any thing like I described

No, she finally noticed the blood clots when she got a pulmonary embolism. She worked at an animal shelter, so had a lot of high risk exposure and had been slowly getting sick for years.

The blood clots can present in various different ways. I mostly noticed bruising and purpura. I did get some headaches, but it was fairly minor compared to the other symptoms. I also got a thing where my fingers felt tingly as if I had slept on my arm. I once got a clot in my leg which felt like a pulled muscle. Luckily that clot did not dislodge and end up in my lung.

The symptoms can vary depending on where the clots are, and how big the clots are.
Posted 7/15/2024 11:22 PM (GMT -5)
Sarah,

I looked back at your older posts. So sorry you have been in so much pain. I don’t know what to suggest due to pretty much everything making symptoms worse.

You said you were diagnosed with autoimmune encephalitis. What is the treatment for that? Were you treated?

Are you still being exposed to mold?

In all the time you’ve had these symptoms, has anything noticeably helped you?
Posted 7/16/2024 3:51 PM (GMT -5)

WalkingbyFaith said...
Sarah,

I looked back at your older posts. So sorry you have been in so much pain. I don’t know what to suggest due to pretty much everything making symptoms worse.

You said you were diagnosed with autoimmune encephalitis. What is the treatment for that? Were you treated?

Are you still being exposed to mold?

In all the time you’ve had these symptoms, has anything noticeably helped you?


I am possibly still in mold but low levels, however I do have high mold but I am in so much pain I have severe like porphyria hyper coagulation that make detoxing and any thing causing inflammation - infections, mold, gut issues causing more hyper coagulation cascade.. I have been diagnosed with pandas/AE, and when I had this severe antibiotic reaction recently the only thing that helped me was steroids which makes me think I had a severe autoimmune reaction and that it was not a herx, but then I had a rebound effect I guess from infection flaring more and I also have had symptoms of porphyria and untreated can cause nerve damage, mold doesn't help, but also bartonella can cause severe issues with AE, hyper coagulation, venous issues getting toxins out, and blood vessel inflammation so I have no idea at this point what the pain is from or if its from a combination of things. I am like losing hope seriously you cannot imagine the pain im in. It feels like someone is damaging my tissue like in my temples sore to the poinnt of muscle damage and knife like swelling pain aching x 100 its the worst thing and I feel like with metabolic issues, bartonella, mold, porphyria, possible blood clotting, and AE how can anyone treat me?? what doctor? I cant find a pandas doctor or integrative that knows this stuff except Ann corson but she's retiring
Posted 7/16/2024 6:06 PM (GMT -5)
Sarah, have you read the book Toxic by Neil Nathan? That's why finally helped me figure out a plan to stop the hyper-reactivity that had me absolutely trapped an unable to tolerate any sort of antimicrobial treatment, detox, and most supplements, plus most activities! The book talks about mold, porphyria, tick-borne infections, and other things you have mentioned. He would say that step one is to tone down your reactivity, so that you can try things without sending your system into a tailspin, and he offers suggestions for how to do that. This book caused a radical shift for me, and it's not an exaggeration to say that following its advice gave me my life back.
Years of LLMDs, and tens of thousands of dollars spent on specialists and alternative treatments, just made me worse and worse. I highly recommend it.
Posted 7/16/2024 6:29 PM (GMT -5)
If you're getting porphyria, I'm guessing you're getting hemolysis from bartonella? The porphyria comes from precursors to hemoglobin, when making new red blood cells to replace the ones that bartonella destroys.

The way I dealt with the clotting was to take antibiotics very consistently to keep the borrelia immobile so it wouldn't get into the endothelium. The autoimmune disorder that led to the clotting was because of the herx. The borrelia would get into the endothelium and die there, resulting in an immune attack on the endothelium. It took a few months for the autoantibodies to go away once I got borrelia out of the endothelium.

I had success with antifungals against mold, mostly atovaquone. Atovaquone and some of the azoles will also hit bartonella, so maybe you want to treat that first?
Posted 7/17/2024 11:29 AM (GMT -5)

Quin said...
If you're getting porphyria, I'm guessing you're getting hemolysis from bartonella? The porphyria comes from precursors to hemoglobin, when making new red blood cells to replace the ones that bartonella destroys.

The way I dealt with the clotting was to take antibiotics very consistently to keep the borrelia immobile so it wouldn't get into the endothelium. The autoimmune disorder that led to the clotting was because of the herx. The borrelia would get into the endothelium and die there, resulting in an immune attack on the endothelium. It took a few months for the autoantibodies to go away once I got borrelia out of the endothelium.

I had success with antifungals against mold, mostly atovaquone. Atovaquone and some of the azoles will also hit bartonella, so maybe you want to treat that first?


What is hemolysis from bartonella? can you explain this "If you're getting porphyria, I'm guessing you're getting hemolysis from bartonella? The porphyria comes from precursors to hemoglobin, when making new red blood cells to replace the ones that bartonella destroys" - I do have anemia and I have elevated porphyrins, as well as autoimmune encephalitis likely due to bart or mold. do you know what could be causing this pain?

Did you have pain like with the clotting like temple or head pain? I started having this pain after a bad reaction to abx treatment thats lasted over a year and I have AE autoantibodies/elevated cam kinase so I have pandas but I am not sure if the pain has to do with hyper coagulation as well or porphyria as a complication from bartonella? it feels like an immune response since the steroids helped the pain but then it rebounded and now im worse off but how did you get the autoantibodies to go away and how did you get Borrelia out o endothelium? I cant even tolerate mold treatment like antifungals ruined me too.. its really any killing that makes this even worse like the pain and im not sure if thats from the pandas, mold, porphyria or blood clot cascade I have no idea how to get out of this at alll
Posted 7/17/2024 6:30 PM (GMT -5)
Let's explain what's going on here... Bartonella attacks red blood cells to get iron. This causes anemia, then your body has to make more red blood cells. In this process, porphyrins are produced, and assembled into hemoglobin, the red stuff in red blood cells that carries oxygen. Sometimes due to bad genetics this process is a bit defective, leading to some excess porphyrins. This is called porphyria. Usually it's relatively minor, the real problem here is the pathogen attacking the red blood cells.

The assumption here is that bartonella is attacking the red blood cells, but babesia also does this. The hyper-coagulation can also burst some red blood cells, so that might be contributing to it too. If your hormones are messed up you can also get endometriosis and bleeding. Have you had lab work done to try to identify what exactly you're infected with?

Yes, I got headaches and pain in my temples (among other symptoms) associated with the clotting. Yes, this is (at least in part) autoimmune. Mostly this was associated with herxing, which would make my immune system go nuts.

What antibiotics did you take? If you kill off too many bacteria, your immune system may over-react and this makes the autoimmune problem worse. You probably want to start with some mild antibiotics that will just put the bacteria into an inactive state and not kill a lot of it. Maybe something like amoxicillin or cephalosporins or azithromycin... or are you not able to tolerate that?

Some of the antifungals will hit bartonella, (eg atovaquone or fluconazole). If you have bartonella, you might herx from that. Mostly I used minocycline against bart, which has an anti-inflammatory effect so my immune system didn't go too berzerk, but I did herx from it.
Posted 7/17/2024 6:47 PM (GMT -5)

Quin said...
Let's explain what's going on here... Bartonella attacks red blood cells to get iron. This causes anemia, then your body has to make more red blood cells. In this process, porphyrins are produced, and assembled into hemoglobin, the red stuff in red blood cells that carries oxygen. Sometimes due to bad genetics this process is a bit defective, leading to some excess porphyrins. This is called porphyria. Usually it's relatively minor, the real problem here is the pathogen attacking the red blood cells.

The assumption here is that bartonella is attacking the red blood cells, but babesia also does this. The hyper-coagulation can also burst some red blood cells, so that might be contributing to it too. If your hormones are messed up you can also get endometriosis and bleeding. Have you had lab work done to try to identify what exactly you're infected with?

Yes, I got headaches and pain in my temples (among other symptoms) associated with the clotting. Yes, this is (at least in part) autoimmune. Mostly this was associated with herxing, which would make my immune system go nuts.

What antibiotics did you take? If you kill off too many bacteria, your immune system may over-react and this makes the autoimmune problem worse. You probably want to start with some mild antibiotics that will just put the bacteria into an inactive state and not kill a lot of it. Maybe something like amoxicillin or cephalosporins or azithromycin... or are you not able to tolerate that?

Some of the antifungals will hit bartonella, (eg atovaquone or fluconazole). If you have bartonella, you might herx from that. Mostly I used minocycline against bart, which has an anti-inflammatory effect so my immune system didn't go too berzerk, but I did herx from it.


is there any way I could talk to you or message? I just think maybe you could help me figure this out and its way to complicated to do over here I mean just to explain my background etc but yeah I think I need blood thinners at least or something to help with the hyper coagulation if thats what's causing my pain I could not do enzymes that would cause severe inflammatory response and I have severe autoimmunity so I cannot take any antibiotics right now. All know is the steroid did bringdown the pain but I guess afterward the pain came back bad, but not as severe as Saturday.. in the ER. I also have high mold and that could also be contributing to my sensitivity and porphyria/mcas.
what was your pain like in your temples how did you relieve it?
I guess my theories for what could be happening is - autoimmune encephalitis autoimmunity response B cells are attacking the brain causing inflammation which attacks the blood vessels and. know that Bartonella may result in sickness in the b cells (polyclonal b cell activation), hyper-coagulation/blood clott / bart, porphyria attack causing cerebral blood vessel inflammation, structural issue venous restricted blood flow/Vascular compression, or mold
Do you have a contact where I could reach you?? you seem like super informed and understanding I just feel very very helpless in my state of pain unimaginable

Post Edited (sarah r) : 7/17/2024 4:02:05 PM (GMT-8)

Posted 7/17/2024 7:43 PM (GMT -5)

Quin said...
ok... I can put my email in my profile

thank you, I sent you an email. sorry if its a bit long but there's details that might help you understand how this all started
Posted 7/19/2024 6:39 AM (GMT -5)
I got your email... Not sure if you got my reply?
Posted 7/19/2024 6:12 PM (GMT -5)

Quin said...
I got your email... Not sure if you got my reply?

yes below was my response


sarah renier <sarahrenier1997@gmail.com>
10:57 AM (6 hours ago)
to lyme321

so with the hypercoagulation, you mentioned you had temple pain/head pain? Did anything help or what got rid of the pain for you ? and how would you describe your temple pain how associated with clotting

I mean i cant tolerate any killing at all and, but to due to my autoimmune encephalitis like you said it's likely due to an immune reaction probably mold too, should I try to treat the autoimmune because I think I need to either deal with the hypercoagulation or autoimmune first and I also have high high levels of mold which caused my mcas and food issues

I have taken claritin, benadryl, allegra, pepcid, singulair, mostly. I was looking into xolair but im scared to do it.

I just want this pain to go away it's absolutely excruciating i can barely eat I am down to only meats now and even that gives me reactions. I really need a good pandas doctor who understands when to kill and when to work on autoimmunity
Posted 7/19/2024 7:48 PM (GMT -5)
Ah okay... I was afraid maybe it ended up in the spam folder or something.

I noticed some temple pain when herxing. Sometimes it would just be on one side. This was a bit different than the pressure headaches that I would get from hyponatremia. Eventually it went away as I killed off the borrelia.

Mold or fungal infections I mostly treated with atovaquone (mepron). I really didn't herx from the fungal infections, it would just go away with treatment. Mepron doesn't do anything to borrelia, but it does hit bartonella somewhat, so usually I would combine it with minocycline in case the bart flared up.

The way I dealt with the autoimmune problem was just to take azithromycin and minocycline continuously to keep borrelia in an inactive state so my immune system wouldn't react to it so much.

I took hydrocortisone but I found it didn't suppress the immune response much. It was more helpful for the hyponatremia. Claritin did reduce the immune reaction somewhat, but it also made me herx and detox because borrelia reacts to claritin. Minocycline also reduced the immune reaction, just be careful with this since it can increase susceptibility to viral infections.

I made the mistake of stopping the zith and mino because it was giving me diarrhea. This allowed the borrelia to become active, then I made the additional mistake of taking valacyclovir while borrelia was in this active state. The valacyclovir killed borrelia as expected, but this caused a huge inflammatory response and autoimmune disorder, and I got TTP.

It took a few months for the clotting to go away. Once you get the autoantibodies, it takes a while for it to resolve.
Posted 8/21/2024 11:05 PM (GMT -5)
Hi! I have Lyme, Bartonella and Babesia. 4 months ago I ended up in the hospital with pulmonary embolism (blood clots in lungs). A couple years prior I did notice red patches on my legs, that were swollen and hot and they hurt. I thought it was just congested lymphatic system. Now I know it was the blood clots that formed in the legs and eventually broke free and went to the lungs. I never experienced headaches though with the blood clots. The Dr. is very confused why I got blood clots as I’m 52, don’t smoke or take birth co trial pills and haven’t traveled. I know these Infections are making my blood thick and slow moving. But for me, this didn’t cause headaches. I just couldn’t breathe when blood clots were in the lungs and started getting panic attacks that I can’t breathe.
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