Over a month of headaches, getting worse

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tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/4/2018 5:14 PM (GMT -6)   
I am losing hope! It's been over a month of all sorts of neurological symptoms, the headaches have been extra intense the last couple days. They are like a vice in the back of my head, the moves to the top, then forehead, bridge of my nose, my neck. I've been taking so many supplements to calm nervous system, nothing is helping. I'm beyond depressed, considering an anti depressant. I stopped treatment awhile ago, I usually have good stretches but haven't had a single day of a break! Having an MRI next week, will be my 4th in 3 years!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/4/2018 6:16 PM (GMT -6)   
Tonya - I am so sorry you’re still suffering with this.

I don’t know what to tell you as I know you have stopped all treatment and are detoxing.

Your Lyme Doc is aware of your situation?

You stopped abx how long ago now?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1119
   Posted 4/4/2018 8:16 PM (GMT -6)   
Tonya,

No one can truly know how bad you're suffering, but as someone who's dealt with migraines for many years, my heart goes out to you. I do hope relief comes soon.

You mentioned you're taking "many" supplements to calm-down your nervous system. Would you be able to list what you're taking, once it's convenient for you? I understand that staring into a bright computer screen with a vice-like headache is no fun.

--------------------------------------------------
Speaking of which...

If you're unfamiliar with and/or don't use it, I highly recommend a free program called f.lux that removes the harsh blue light from your computer screen.

/justgetflux.com
/justgetflux.com/flux-setup3.exe ← (personally, I use this older version)

Using the monitor full-blast during the day is one thing, but it's not good at night, as it can interfere with your circadian rhythm and the production of melatonin by your pineal gland. This, in turn, this impact your sleep. Personally, I use it in night mode ALL the time, since I'm prone to get migraines from bright light and glare. Since using this application, my computer-monitor-induced migraines have been greatly reduced.

Anyway, back to your supplements.
--------------------------------------------------

Are you taking any other supplements for things NOT related to your nervous system? Any medications?

I'm sorry to play 20 Questions. I'm just trying to paint a picture what you're doing and see if anything obvious jumps-out.

Finally, you're likely aware of them, so forgive my mentioning them as a reminder:

* Ensure Adequate Hydration: You don't need to chug two gallons (7.5 litres) of water per day, but make sure you're drinking, perhaps, four of five glasses. The less water-rich fruits and vegetables, the more water we should drink. Through various means like respiration, sweating, bowel movements, urination, it's estimated that the "average" person loses approximately 400 ml (27 ounces) of water daily. That's about 3.375 glasses of water, just to balance intake and expenditure.

* Avoid Artificial Sweeteners: Aspartame, Saccharin, Sucralose, etc.
* Avoid Artificial Colors/Dyes: Blue #1, Red #40, Yellow #6, etc.
* Avoid Nitrates/Nitrites: Processed meats like sausage, pepperoni, lunch meat, etc.
* Other Things to Avoid: Monosodium Glutamate (MSG), avoiding chewing gum
* Other Common Triggers: Wines, aged cheeses, nuts, citrus fruits, dried fruits, and more
* Be Mindful of Caffeine: Caffeine can both exacerbate and relieve a headache. Dose matters.
* Things That May Help: Green tea, ginger root, cold compress, hot shower, massage, acupuncture/acupressure, and chiropractic

If you've been taking any prescription or over-the-counter pain relievers, using them frequently can cause rebound headaches.

Wishing you a fast recovery,

The Dude

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 4/4/2018 10:55 PM (GMT -6)   
tonyaraven,

I'm glad the Dude posted all that he did. I thought about responding earlier and asking if you can list everything you're taking right now. Some of it could possibly be making things worse. If you list it and it raises a red flag for anyone, they can speak up about it.

Also, the Dude's list of things to avoid reminded me of something else. Avoid chemicals and fragrance even if you don't think you have sensitivities to them.

When my chronic symptoms first started in 2009, an allergist was treating me. He told me to stop using all personal care products and gave me a list of what I was allowed to use. I balked at it. He got in my face and pointed his finger at me and said, "Walk the line!" Best doctor I ever had smile I agreed and obeyed and got every bit of fragrance out of my house, out of my car, and off of my body and possessions. At that time, I had chronic headaches probably at least 3 days a week. Once I got the fragrance out of my life, it instantly cut my headaches in half. That doctor made a believer out of me. I now have disabling chemical sensitivities, especially to fragrance. That stuff is poison, and it is in EVERYTHING.

The good news is that today there are far more fragrance free products on the market, and they can usually be found at Walmart or somewhere like that. Back then, they were hard to find, and there were no choices among brands.

Avoiding chemicals and fragrance won't cure Lyme or coinfections, but it should definitely make you feel better.

Essential Oils:
I know lots of folks like these, but the smells are highly concentrated. If you have these, you may want to avoid them at least until the headaches stop unless they are relieving your pain. If you can still smell them even when they are not being used, put them in another place away from you. Essential oils bother me as much, if not more than, synthetic fragrances.

Post Edited (WalkingbyFaith) : 4/4/2018 11:00:16 PM (GMT-6)


tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/4/2018 10:59 PM (GMT -6)   
Thanks girlie and dude! So this what's been going on...The month of February was fairly good just a few small bumps in the road, I was back to treating Lyme and babesia after taking a week off in January for another flare up that lasted a little over 2 weeks. Then out of no where the first Saturday of march my 'switch' went off and I felt so bad! It started with headaches and neck pain then progressed into periods of panic attacks and pins and needles attaching my hands and feet. The headaches are constant, although seem worse morning to mid day and sometimes lighten slightly in the evening but not much. I also get this nervy pain in my spine, sometimes I'll feel flushed, or a slight burning sensation. My llmd thinks it's Bart, I did 2 days of rifampin and the second day was hit so hard with panic and insomnia and headaches were much worse. I've been off all treatment for well over a week. The supplements I'm taking are: gaba, l-theanine, Chinese skullcap, lithium orotate, magnesium, taurine, melatonin (there many be a few more I can't think of). I'm also taking Ativan at night for the panic and to help headaches. I'm feeling so depressed, not sure if it's due to the pain or do to Lyme but it's scaring me. I'm wondering if I need to try an anti depressant for awhile (other then Ativan I've never taking one). I'm SO afraid of treating bart since I can't handle things to get worse but they almost seem like they are getting worse anyway! I just don't know what's happening to me!! Thank you for your headache guide, I must admit I need to try to drink more, just hard when feeling so lousy!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/5/2018 12:08 AM (GMT -6)   
Tonya - so although it seems like a really long time when you’re suffering - a week really isn’t that long for the toxins to be still causing you grief.
I think it could still be the problem - and you will feel better soon.

I think it’s a good idea to look at what WBF and the Dude suggested and see if something helps as well.

Hang in there - and be kind to yourself...keep telling yourself that this is temporary and it will pass.


(((HUGS)))
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/5/2018 6:02 AM (GMT -6)   
Thanks Girlie! Actually it's only the 2 rifampin I took that are a week and a half since I took them. The doxy and Malarone have been a month! On top of the headaches and nerve pain the anxiety/panic/depression are really scaring me! Should I start MC Bart-1? I'm so scared treatment will make things worse but at the same time if I don't do anything that might be worse!

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 4/5/2018 8:56 AM (GMT -6)   
Okay. I just looked up the ingredients in MC-BAR 1 here: /beyondbalanceinc.com/products/core-immune-support/mc-bar-1/

Honestly, I don't see anything in here that is likely to affect Bartonella specifically. It does have cat's claw, which is the herb Buhner's recommends for immune support with Lyme. It has pau d'arco and Oregon grape (a berberine). Those are often used in GI treatments for parasites, Candida, other gut pathogens.

Go ahead and try some if you want. I would start at 1/4 or less of a dose. It does not say how much of any herb is in it. It is a glycerin formula, so apparently they do not use alcohol extraction. I get the feeling that Beyond Balance formulas are not very potent.

Like I said, go ahead and try it. If you feel no better or worse, increase the dose a little the next day.

I still think you would be better off trying the herbs Buhner recommends. Since you stopped abx you want to treat the infections without giving them too much time to play. If I'm not mistaken, you never finished your babesia treatment did you? Was Lyme the only one you finished antibiotic treatment for?

I still recommend Buhner's protocols. I'm pretty sure I laid out some suggestions for going about that in one of your previous posts. I think you said you did order Buhner's Lyme book. If you did not order the bartonella and babesia books, I highly recommend you get those, as they contain the full protocols for all the coinfections.

Remember, Japanese knotweed is essential for both Lyme and Bartonella. Sida acuta will address both Bartonella and Babesia.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 4/5/2018 9:06 AM (GMT -6)   
Also, have you tried kudzu root, red root, pasque flower, or coral root?

Kudzu can reduce brain inflammation and has helped my head symptoms.

Red root helps to clear out the lymph, which gets sluggish with bartonella. Peteza has said her head pain stopped after she started red root.

Pasque flower and coral root are some of the herbs Buhner recommends for severe anxiety, fear, etc. HOWEVER, check for any drug interactions if you are taking antidepressants, psych meds, sleeping pills, etc. You may need to stop those before starting herbs of the same nature. Consult with your doctor about how to properly stop any Rx meds.

1000Daisies
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Date Joined Apr 2016
Total Posts : 2438
   Posted 4/5/2018 9:10 AM (GMT -6)   
I am so sorry to hear you are still suffering so much. Many of us understand the "losing hope" feeling. I've been there too. HUGS!

Since you've been on abx, have you ruled out yeast issues as a factor too? I'd be suspicious about that - especially with the headaches. For me, treating the yeast made my headaches go away (but mine weren't like yours - mine were periodic, not consistent). It doesn't sound like yeast is your primary issue, but I'd be suspicious it could be playing a factor.

Hope you are able to feel better soon!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1682
   Posted 4/5/2018 9:16 AM (GMT -6)   
One more thing. You might benefit greatly from working with an herbalist or naturopath who is experienced with Buhner's protocols for Lyme disease. Some of them will work with patients over the phone. Buhner has highly recommended his partner, Julie McIntyre, and noted in his bartonella book that she has experience and success treating difficult cases and those with lots of emotional symptoms.

That said, you would likely benefit from someone you could have face to face contact with, who is very hands-on and has the right mix of herbal knowledge and personal touch with more time than a doctor would have. Such a person would likely be cheaper than an LLMD, as well.

You could start a post like you did about looking for an LLMD. Ask about herbalists or naturopaths versed in Buhner's protocols who others have found helpful.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 175
   Posted 4/5/2018 9:20 AM (GMT -6)   
I have bart and am prone to migraines, in fact I have one most of the time that is felt as a light, painless pressure under my eyebrows. What triggers the bad ones for me are vasodilators or vasoconstrictors, many foods and supplements have these effects, and they are additive. For instance, I can drink fresh ginger root tea or take cat's claw alone, but together they'll cause a migraine. This page explains more about the known biological causes.

I would stop the l-theanine, it increases nitric oxide production which leads to vasodilation. Lithium orotate makes me depressed, I can't take it in even small doses.

The Dude Abides
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Date Joined May 2017
Total Posts : 1119
   Posted 4/5/2018 11:37 AM (GMT -6)   
Hi, tonyaraven:

Thanks for the list of supplements and medications.

Supplements:

* GABA
* L-Theanine
* Chinese Skullcap
* Lithium Orotate
* Magnesium
* Taurine
* Melatonin

Medication:

* Ativan

In the above post, acarined makes a valid point about L-Theanine increasing Nitric Oxide (NO) and possibly leading to vasodilation. (Vasodilation: opens blood vessels, decreases blood pressure. Vasoconstriction: Constricts blood vessels, increases blood pressure.)

But, it seems some of the other supplements can cause vasodilation or vasoconstriction, too. So, there could be a push/pull between some of the supplements.

* GABA ← (vasodilator)
* L-Theanine ← (can bind to glutamate (vasodilator) receptors + increases GABA (and others) in the brain
* Chinese Skullcap ← (vasodilator)
* Lithium Orotate
* Magnesium← (helps reduce NO, and, in turn, decreases vasodilation)
* Taurine ← (vasodilator)
* Melatonin ← (vasoconstrictor)

A few more questions:

1. How long have you had headaches? Do you have a history of them for many years or decades? Or, did they appear with Lyme? Or, when starting treatment for Lyme?

2. Was there a period of time when you were taking ALL of the above supplements and medications WITHOUT having any headaches?

3. Do you have high, low, or normal blood pressure? (I assume "normal," since you didn't mention any medications like Diuretics, ACE Inhibitors, Beta Blockers, etc.)

4. Do your headaches "throb" or "pulse" with your heartbeat?

Obviously, I would discuss this matter with your doctor(s), as I am not a healthcare practitioner.

Personally, when I'm dealing with strange symptoms I can't resolve or understand, I tend to taper-off any supplements (and, possibly medications, but only under the guidance of my doctor), in reverse order that I introduced them. I try to go back to my "last known good state" when I didn't have the issues or I had less of them.

The Dude

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/5/2018 2:41 PM (GMT -6)   
Thanks so much to all of you! I will do a post for someone who knows buhners herbs, thanks wbf!

As far as my supplements I've been taking them all along with no problems, they help me sleep. My history with headaches goes back to when my second child was born 12 years ago, that's when I had my first MRI. They were mainly a vice in the back of my head. That's when they did an MRI of my head and neck and it should I had bulging discs in my neck, and assumed that was the cause. But the headaches weren't too often and when they were bad I'd take Vicodin and it would wipe them out. When I first started having my symptoms with Lyme I saw an alternative practitioner who said my 'atlas' was out and it could cause all the weird symptoms I was having (this was before a Lyme diagnosis). So I had it done super easy no force, 2 hrs later I went into shock, dizzy, shaking and super nauseous! That lasted a couple days and then the pain set in for almost 3 months, then a masseuse retriggered it and cupping retriggered it too! I did have a small adjustment in my upper back a few days before things got bad and the day before I had my hair cut and when she was washing my hair my neck was very uncomfortable! I saw my Physical therapist and he didn't think it made sense for either of those to trigger it because the pain didn't start until later. I had another MRI after the atlas adjustment and it showed larger white matter in my brain, but not what ms typically looks like. One neurologist said it looks like a person with migraines. This round is different too since on top of the severe headaches and neck pain I'm having nerve pain in my spine, pins and needles in hands and feet and sometimes really super intense in feet and anxiety and panic attacks. I'll also feel so achy all over and weak and really unwell! So I'm lost as to what is happening! I had a fairly good month with only small bumps in the road and this has been the longest and most intense I've felt in a long time! Honestly if it wasn't for my children I could easily step in front of a speeding truck and be done with...and that really scares me that I feel that way! Sorry this is so long!

WalkingbyFaith
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Date Joined Aug 2017
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   Posted 4/5/2018 2:51 PM (GMT -6)   
I had forgotten about all that history with your neck and 'atlas.' I don't know what kind of doctor or provider could unravel all that. Is there a chiropractor you trust who has enough knowledge of both the medical aspects and the 'atlas' adjustment who you would trust to try to adjust things in a way that would bring relief?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/5/2018 4:13 PM (GMT -6)   
WalkingbyFaith said...
Okay. I just looked up the ingredients in MC-BAR 1 here: /beyondbalanceinc.com/products/core-immune-support/mc-bar-1/

Honestly, I don't see anything in here that is likely to affect Bartonella specifically. It does have cat's claw, which is the herb Buhner's recommends for immune support with Lyme. It has pau d'arco and Oregon grape (a berberine). Those are often used in GI treatments for parasites, Candida, other gut pathogens.

.


My llnd wanted me on that...and I also don't see how it's a Bart treatment.


Cat's claw (Uncaria tomentosa) does have antibacterial properties...but it's not specifically one used for Bart.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/5/2018 4:16 PM (GMT -6)   
I would seriously be scared to death to let anyone touch my atlas ever again!! My husband used to give my shoulders and neck a massage to help my headaches, but since that adjustment over 2 years ago I am ok afraid for him to touch my neck or shoulders!! It's very sad!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/5/2018 4:18 PM (GMT -6)   
WalkingbyFaith said...
I had forgotten about all that history with your neck and 'atlas.' I don't know what kind of doctor or provider could unravel all that. Is there a chiropractor you trust who has enough knowledge of both the medical aspects and the 'atlas' adjustment who you would trust to try to adjust things in a way that would bring relief?



That reminds me. An upper Cervical chiropractor works on the Atlas.

That's who I see...and he has done wonders for several family members. My mom suffered from headaches for many, many years...and after seeing him....they resolved.

He helped me as well.

No jarring, no crunching...just a little pressure behind the ear...but X-rays are done first before any treatment.

It sounds like quackery...but it makes sense. If the atlas is not aligned...then the rest of the spine can be out...as the head wants to be balanced/straight and has to compensate which results in spine issues.
(I don't think I'm explaining it very good...!!!)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32624
   Posted 4/5/2018 4:21 PM (GMT -6)   
tonyaraven said...
I would seriously be scared to death to let anyone touch my atlas ever again!! My husband used to give my shoulders and neck a massage to help my headaches, but since that adjustment over 2 years ago I am ok afraid for him to touch my neck or shoulders!! It's very sad!



What about a physiotherapist that could take a look without doing anything to hurt you?

Although, a good one is hard to find. I freak out, too when someone is too aggressive...I tried 4 or 5 physios that did not help me.
I gave up.

Then tried one more time about 2 years later...and she is wonderful. I always feel better when I leave.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1119
   Posted 4/5/2018 5:14 PM (GMT -6)   
tonyaraven said...
I had my hair cut and when she was washing my hair my neck was very uncomfortable! I saw my Physical therapist and he didn't think it made sense for either of those to trigger it because the pain didn't start until later.


This is typical thinking by many healthcare providers, in my experience. They think that "X" should happen and then "Y" should be an immediate result. (Assuming they even correlate the two events.) Plus, some tend to think things happen in isolation - do one thing, get only one result. If only the body were that simple.

I see many things like dominoes. In the case of headaches, the Atlas adjustment could be one domino that was stood-up. Next, a chemical assault could be the next domino. Another domino might be an emotionally stressful event. Three dominoes, but still no headache. Finally, the last domino might be a restless night with no restorative sleep. This, finally, was the trigger that causes all the dominoes to tumble, and, thus, a headache occurs.

One might conclude that it was the lack of sleep that caused the headache. In the above scenario, it was the trigger. But, the cumulative assaults all played a part. It could have as easily happened in reverse order, starting with the poor sleep. In that scenario, the poor sleep might have not been enough to trigger the headache. But, add a stressful event, the chemical assault, THEN the Atlas adjustment. The headache could have occurred anywhere (or, not at all) in the chain. We all have a threshold, but never know what will drive us over that threshold.

Anyway...

Over the years, I've read about others who were told their Atlas needed adjusting, too. Unfortunately, some had bad outcomes. I've had by lower back, neck, and shoulders adjusted many times, over the past 30 years, and count myself lucky. Some of those chiropractors used high-velocity motions and I sometimes thought my head might twist-off in their hands. Perhaps there are situations that call for such movements. But, for more sensitive areas, there's chiropractic tool called an Activator that concerns me less. My primary medical doctor is a Doctor of Osteopathy and they doctors do manipulative therapy, too. But, my doctor hasn't found a compelling reason to adjust me, unlike many chiropractors I've visited. I like my doctor's caution to not fix anything that's not broken.

In light of your more detailed history (thank you for answering all the questions), I see this is even more complicated than you'd previously explained - which was still quite complex. Regrettably, I now realize the direction in which I was heading is unlikely to be of any benefit.

The pins-and-needles pain sure seems like nerve involvement. But, again, I'm not a doctor and just hypothesizing. Anxiety could be related to the vagus nerve. There are websites (and, YouTube videos) that talk about ways to increase vagal tone and potentially calm anxiety and soothe the nervous system. The vagus nerve can impact so many different bodily processes.

The only other things I can think of are:

Trying to find a "skilled" (however one can define that term) chiropractor that would give you a thorough, systematic assessment to determine what might be "out-of-whack" (forgive the medical terminology). I've heard good things about chiropractors that follow this training of Dr. Clarence S. Gonstead. But, I have no personal experience with such doctors. If you're curious to find such a doctor and have a discussion, you can search for one here: gonstead.com/find-a-gonstead-doctor

You could also consider seeing an Osteopathic Physician, just to try something different.

Getting another MRI is probably good, to rule-out anything concerning. But, again, since you have pain that would appear to involve the nerves, I would be looking for something impinging on them. And, the vagus nerve, for anxiety and overall nervous system.

I sincerely wish you much luck (and, a clear MRI) on your path to figuring-out what's happening. I hope to read some good news from you soon.

Best wishes,
The Dude

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/5/2018 5:27 PM (GMT -6)   
Wow Dude! Thanks for taking the time to share all of that! So do think this actually isn't Bartonella? Two days after taking rifampin things got really bad with panic, insomnia and headaches increased as well as nerve pain, so I kind of took that to be a herx and that bart was the driving factor but I just don't know any more! The other thing is my headaches will sometimes disappear and I won't have any issues....so it makes no sense to me!! I so wish there was an easy fix! A primary care dr gave me a prescription for elitriptan got migraines, trying decide if I should try it or not! Feel so depressed!

goshawk
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Date Joined Sep 2016
Total Posts : 2115
   Posted 4/5/2018 5:56 PM (GMT -6)   
Hi and sorry you are still having a rough time. Don't give up you will figure this out somehow.

Are you getting an MRI of the neck and with dye? The head MRI isnt enough if your looking for something that may be pinched or problematic.

I would ask for a neck MRI with dye. I remember you saying symptoms came on strong again after having hair washed at hairdressers. Maybe something got tweaked.

Even though you have Lyme and co something else could be going on too so good to have the MRI for peace of mind and to rule things out.

Keep us updated and I wish I could take all your pain away.


Buhner suggests Japanese Knotweed at an anti inflammatory.

Woodduck12
Regular Member


Date Joined Dec 2017
Total Posts : 135
   Posted 4/5/2018 5:58 PM (GMT -6)   
My problems are also primarily Nuero pschy in nature. It does suck and I too have hope that it will get better. Somethings have gotten better on Buhners bart protocol. I Saved enough for a llmd appt. on the 18th. I also am scared of treatment because when I stupidly started the buhner protocol at full dose I was in rough shape and glad to be here now.

I know its easier said then done but take it one moment at a time things can do a 180 anytime now. YOU GOT THIS!!!

The Dude Abides
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Date Joined May 2017
Total Posts : 1119
   Posted 4/5/2018 7:28 PM (GMT -6)   
tonyaraven said...
Wow Dude! Thanks for taking the time to share all of that! So do think this actually isn't Bartonella? Two days after taking rifampin things got really bad with panic, insomnia and headaches increased as well as nerve pain, so I kind of took that to be a herx and that bart was the driving factor but I just don't know any more! The other thing is my headaches will sometimes disappear and I won't have any issues....so it makes no sense to me!! I so wish there was an easy fix! A primary care dr gave me a prescription for elitriptan got migraines, trying decide if I should try it or not! Feel so depressed!


Hi, tonyaraven:

It was my pleasure to have the discussion, but, ultimately, it seems I had nothing useful to offer. :-(

As for the question of whether or not the headaches stem from Bartonella, I'm sorry to say that I don't have enough knowledge to comment.

Since I've had minimal testing for coinfections and I'm not currently taking any antibiotics, herbs, or following any treatment protocols, my knowledge and experience is very limited.

However, for what it's worth, if I were in your situation, I would consider trying something to stop the pain. Now, I really dislike taking prescription or over-the-counter medications. Some of them can be hard on our stomach, liver, and likely other body systems. But, the constant pain is not without its own problems.

Next, aside from trying to quell the pain, I'd rule-out other, non-infectious things. Have the MRI of your brain. Ask about the possibility of nerve involvement and ask what other diagnostic tests might be available to help pinpoint the root cause. If your doctor's can't/won't help, consider seeking-out one of those Gonstead-trained chiropractors for a phone consultation to see if they might be worth pursuing.

Perhaps an Osteopathic Physician. Depending on your available resources, you could seek-out a Biological Dentist to rule-out dental infections. You could get tested for nutritional deficiencies (SpectraCell, etc.). Or, you could pursue testing for heavy metal toxicity.

But, if all that checks-out, perhaps it would then be reasonable to assume the headaches are related to Bartonella or some other coinfection.

Obviously, there are a lot of different options. And, even options within those options (such as testing for nutritional deficiencies and heavy metals). But, SOMETHING is causing your headaches. There was a point when you did NOT have them. Then, some event (or, cumulative events) occurred and then the headaches started. Headaches are a SYMPTOM and not the root cause. Something is CAUSING the pain. Consider pain relievers to help with symptom relief/management, but don't let anyone convince you that's your only option. Use it as a crutch, as much or little as you feel you need. But, you deserve to find the source of the pain.

I'm sorry I don't have anything helpful to offer!

Keep us posted, won't you?

Sincerely,
The Dude

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 4/5/2018 7:33 PM (GMT -6)   
Girlie- I do have a really great physio or PT. In fact I see him tomorrow. He helped me tremendously after the atlas adjustment, I was ready to have injections and he encouraged me to wait and glad I did. Just to add to the total confusion of things I also had the same reaction with the weird headaches/ neck pain after I did the insanely stupid botox injection between my brows! They had actually wanted to do botox in my head to help with the headaches, thank goodness I didn't because things were bad for 3 months after that very small injection!! I am a real puzzle to many providers including my llmd!

Goshawk- yes, I should request a neck mri too, definitely want to rule anything else out. However the puzzling part is if it was something in my neck why would I be getting all these other weird symptoms too, like the intense pins and needles and pain in my feet at times and the anxiety/panic attacks? Also I shouldn't have reacted so intensely on the 2nd day of Rifampin if Bart wasn't on board right? It seems like if it was an allergic reaction or side effect of the rifampin the problems would have started the day i first took it. I'm just so confused! I guess I'll only know if I start to treat Bart.

Woodduck12- You are so right about how things can change at any time! That is the craziest part of this disease and definitely why people think we are actually 'crazy'!!

Sounds like MCBar-1 isn't the way to go. I think I'll call tomorrow and see about having someone help me with Buhner's herbs. I'd love to get there input on whats going on with me. There is a little part of me that hopes this is all just Bart having a big old party in me and that somehow I can shut that party down! What a dream come true it would be if my headaches would go away if I could eradicate Bart! I just don't want it to kill me in the process of trying to kill it!!!

Just wanted to say a massive 'thank-you' to all of you! You are so awesome to take the time and give me your thoughts! I can't say how much this means to me!!
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