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Posted 1/4/2022 4:37 PM (GMT 0)
In the last-few weeks, I've had a return of some old symptoms and some new ones.

The old consist of morning depression-anxiety mix, "bouncing" blood pressure," more neuropathy, fatigue, more so at night.

New consists of hair falling out quickly (it's fallen out before but not this fast on on side), though it has slowed down in last couple of days. Also, new is my head and skin itch when clothes or pillow are pressed against it. Head doesn't itch at night when laying on side of head, but in morning, when I lay flat and back of head is hitting pillow, I can feel it. It's not a burning or tingling, but feels more like nerves are making it itch. Same goes for skin, especially around belt line where most pressure is put.

I found this years ago as a teenager by chance when I had poison ivy, but using a hair dryer sometimes on skin makes it feel better. The reason I relate this to nerves is because once I use the hair dryer, I have to pee afterwards, like it's hitting the nerves. Odd, huh?

Could Bartonella or Lyme cause these symptoms? I've been thrown between Bart, Lyme, autoimmune Sjogrens and kidneys, though the nephrologist I see said he does not believe it is being caused by kidneys. My feet will burn, hands and feet freezing cold at times.

I'm taking Lions Mane now for a month at 12 drops, plaquenil for a month also, Bicillin every 6 days (1.2 mu), cordyceps, houttyunia every other day, Argentyn 23 every other day.

My mind is getting loose on me as my thoughts go to the negative. Any advice is well taken.
Posted 1/4/2022 4:49 PM (GMT 0)
Hi running wild,

I get the itching right above the belt line too. Like if I lay on my left side, it's the side that hits the bed that starts itching and I have to roll over to scratch it.

Garzie explained a lot to me about how Bartonella has all kinds of effects on the skin, it put me at ease a whole lot. I think he might be able to help here.
Posted 1/4/2022 5:06 PM (GMT 0)
These are all symptoms of neuropathy. You need to get on IVIG. That is the treatment. I can only say it so many times. Why not call Dr Younger and speak with him? Or you can give me a call and we can talk about it. I've been through this.
Posted 1/4/2022 5:11 PM (GMT 0)
as usual i should preface anything i say by stating i do think bartonella is responsible for a great deal of my own symptoms - and many of those of the people here.

both Lyme and bart are known for causing both skin issues and issues with nerves in the skin
bart does this mainly though causing small vessel disease - where the blood flow and hence oxygen and nutrient flow are very much reduced via its damage to the small vessels and by clogging them up with fibrin deposits - see the recent preso from Galaxy on this - they had slides showing the blood vessels 50% blocked up with fibrin. this seems to damage the nerves as well causing all sorts of tingling, burning, itching type sensations - or buzzing, vibrations, you name it

bart also causes poor circulation in hands and feet - i have this - in fact it can cause any circulatory problem
that's the issue with small vessel disease - it can cause symptoms anywhere

Lyme is also know for causing these skin sensations and in particular - both numbness and exaggerated response to touch - ie pain from even light touch - my partner ( lyme and bart we think ) had this

my best guess rw is that you are having some kind of flare due to treatment - maybe just hold everything where it is for a while to see if it settles - it may just be something you need to endure to get through

or if it too much - start taking things out one at a time each 2 weeks starting with the ones you think might be the cause - in the hope its just one herb or treatment that triggers it as a kind of herb reaction rather than herx - but trial and error is the only way and this has to be weighed against interrupting treatment - so you may opt just to live with it.

my skin has erupted in more gitty bumps, white head type things and some large spots since adding bromelain to my treatment - and i am getting some tingling sensations all over - as i do when stepping up herbs - so its like adding 50% more herbs - just a herx like reaction to treatment i think - i am just monitoring it as something expected and keeping going as long as the sleep disturbance and fatigue are manageable.
Posted 1/4/2022 5:17 PM (GMT 0)
Thank you Garzie, that actually helped me a lot to read too, and you've already helped me so far with all this.
Posted 1/4/2022 5:30 PM (GMT 0)
Dcd2103,

Do all llmds do ivig?

Post Edited (Sunflower1920) : 1/4/2022 10:35:26 AM (GMT-7)

Posted 1/4/2022 5:46 PM (GMT 0)
Most dont understand it. There are very few who are well-versed in IVIG, thats why everyone in mine and RW's situation go to the 4-5 who do.

My neuro/llmd is Dr K. Guy has been treating lyme and bart neuropathy since before anyone knew what small fiber neuropathy is. He was using IVIG way before Mass General starting putting out papers on it. Just so sharp on the immune system. He did his own study on SFN on 40 patients I believe to prove with repeat nerve biopsy that the nerves regrow on IVIG.

He may have more experience than anyone out there on this stuff. And he says that when an infection has gone on that long, especially when it has become autoimmune, his best results for neuropathy symptoms come from calming the immune system w/ IVIG first. He felt that mine was unlikely to resolve without it.

Especially in the setting of a sjogrens neuropathy, IVIG is a must.

Post Edited (dcd2103) : 1/4/2022 10:51:02 AM (GMT-7)

Posted 1/4/2022 5:51 PM (GMT 0)
Sad how it can't be attainable for most ppl as its used by very very few llmds alone.
Posted 1/4/2022 5:59 PM (GMT 0)
Yup. The other problem is that its extremely expensive. Like $10-20k a month. And they will not prescribe it for lyme alone as there's no FDA study.

Basically, the FDA approval study was done for IVIG for CIDP and large fiber neuropathy. As a result, insurance HAS to cover it for that because its FDA approved. Science literally didnt even know what small fiber neuropathy was until a few years ago. They thought all neuropathy is large fiber. As such, the FDA study was never done. Many neurologists I've been to dont even realize there's a difference.

So in order to get IVIG for small fiber neuropathy you really need a neuro who is experienced using it and getting it approved. Given RWs autoimmune diagnosis he may be able to get it. The neuro has to make a case for off-label usage in the setting of a demyelinating neurological autoimmune disease, which sjogrens is.
Posted 1/4/2022 6:02 PM (GMT 0)
No insurance coverage ?
Posted 1/4/2022 6:04 PM (GMT 0)
Unless you can get a neuro who can make the case that it's necessary and convince insurance to approve it. Many people w/ sjogrens get it for that reason.
Posted 1/4/2022 6:06 PM (GMT 0)
Rainy - Do you have nay kind of neuropathy in hands or feet?

dcd - I haven't ignored your comments on IVIG. Just would have to find a doctor who prescribes it so I can run it through insurance. After so many years of this, large amounts of $ to treat are not there. It's not that I'm struggling to make it financially, but amounts that high would bottom me out. So it's not that I doubt your thought. It's the financial part that has me binded there. Not sure how many doctors would actually prescribe IVIG so I can run it through insurance.

If I were younger, I could always make the money back. But working the number of sound jobs I used to is no longer an option, even with the money one can make doing so.

Garzie - I've wondered if upping treatment, as you mentioned, is causing this, Bart and Lyme alone or the Sjogrens Syndrome, as dcd and I have discussed. The Sjogrens question throws a wrench into things or least confuses things in my mind. I believe that is what dcd is saying.

So you have these overlap symptoms that could be caused by any of the three mentioned. The herb/medicine side is easily tested by, as you mentioned, backing off some and trying different ones. The autonomic autoimmune thought is also there, which, I think, plays a part in dcd's thoughts.
Posted 1/4/2022 6:15 PM (GMT 0)
RW I am just as frustrated as you. My level of anxiety and depression has been at it's highest point these last few months. With zero answers. $ is of a major concern.
Posted 1/4/2022 6:23 PM (GMT 0)

Sunflower1920 said...
Dcd2103,

Do all llmds do ivig?

I don’t think my llmd - Dr J does IVIG.
Posted 1/4/2022 7:15 PM (GMT 0)

running wild said...
Rainy - Do you have nay kind of neuropathy in hands or feet?

dcd - I haven't ignored your comments on IVIG. Just would have to find a doctor who prescribes it so I can run it through insurance. After so many years of this, large amounts of $ to treat are not there. It's not that I'm struggling to make it financially, but amounts that high would bottom me out. So it's not that I doubt your thought. It's the financial part that has me binded there. Not sure how many doctors would actually prescribe IVIG so I can run it through insurance.

If I were younger, I could always make the money back. But working the number of sound jobs I used to is no longer an option, even with the money one can make doing so.

Garzie - I've wondered if upping treatment, as you mentioned, is causing this, Bart and Lyme alone or the Sjogrens Syndrome, as dcd and I have discussed. The Sjogrens question throws a wrench into things or least confuses things in my mind. I believe that is what dcd is saying.

So you have these overlap symptoms that could be caused by any of the three mentioned. The herb/medicine side is easily tested by, as you mentioned, backing off some and trying different ones. The autonomic autoimmune thought is also there, which, I think, plays a part in dcd's thoughts.

yep - but i think all of us with Lyme/ Bart etc have auto-immune reactions going on all the time- just not necessarily with a formal name and obviously to different degrees.

for some treatment is entirely possible - may flare auto-immune symptoms for a while - while inflammation is increased - but doesn't spiral out of control - and settles down again after treatment
for others it can flare out of hand - i.e. where dcd is at - and active treatment seems totally impractical while that is happening.
Posted 1/4/2022 7:35 PM (GMT 0)

running wild said...
Rainy - Do you have nay kind of neuropathy in hands or feet?

dcd - I haven't ignored your comments on IVIG. Just would have to find a doctor who prescribes it so I can run it through insurance. After so many years of this, large amounts of $ to treat are not there. It's not that I'm struggling to make it financially, but amounts that high would bottom me out. So it's not that I doubt your thought. It's the financial part that has me binded there. Not sure how many doctors would actually prescribe IVIG so I can run it through insurance.

If I were younger, I could always make the money back. But working the number of sound jobs I used to is no longer an option, even with the money one can make doing so.

Garzie - I've wondered if upping treatment, as you mentioned, is causing this, Bart and Lyme alone or the Sjogrens Syndrome, as dcd and I have discussed. The Sjogrens question throws a wrench into things or least confuses things in my mind. I believe that is what dcd is saying.

So you have these overlap symptoms that could be caused by any of the three mentioned. The herb/medicine side is easily tested by, as you mentioned, backing off some and trying different ones. The autonomic autoimmune thought is also there, which, I think, plays a part in dcd's thoughts.

I hear ya RW. I just hate to see you suffer, very upsetting because I've been there w the neuropathy (and am currently there w/ the enthesitis thanks to our friends at pfizer). I'm not suggesting you pay for IVIG out of pocket. But Dr Y in NYC is worth a phone call. If you can afford his consultation and test fees, which while arent cheap, but also arent crazy compared to the cost of IVIG or what you'd pay at some of these centers like Spero or biologix, and if he thinks he can get you IVIG, then its worth it multiple times over.
Posted 1/4/2022 8:14 PM (GMT 0)
Sunflower - With your anxiety and depression - Is it like it's intrinsic, meaning it's not anxiety or depression created by situations but more of something that seems biological? That's the only way I can think to ask it. The patterns are established, such as certain times of the day/night?

dcd - Glad you understood I wasn't questioning your idea on IVIG. Your neuropathy was helped how much with IVIG? Believe you posted that once before when I asked.

Totally get it. On Dr. Y - Can one schedule what you mention with him and then, if he feels it would be helpful, he could prescribe IVIG, which could be through insurance?

Nothing's cheap with Lyme, but it is the actual cost of IVIG that I could not swing now.
Posted 1/4/2022 8:24 PM (GMT 0)
I'm going to email you about Dr Y.

So IVIG takes some time to build up in the system. So the first time i did it, i was helped quite a bit. I was on it 6m. It's cumulative. So if it starts to work and you're say 50% better in 6m, the effect keeps building. So 2y in you might be 90% better. It takes time to wear the immune response down.

Unfortunately I got cocky because I wasnt having any side effects to the infusions, didnt know what I was doing, and turned the infusion rate up way up. This was 2019. I got serum sickness immediately and had to stop. So we retried it, and by june of 2020 I was on it 3m I think and it started to kick in big time again. was feeling great, but i started to develop muscle pain which i thought was serum sickness.

Turns out this was the Psoriatic Arthritis which had nothing to do w/ the ivig. Felt kinda similar, both cause pain in the joints, but its a very very different response and we now know it wasnt serum sickness because it didnt go away when i stopped IVIG, and I also devleoped enthesitis. So just coincidence.

So I just restarted 6 weeks ago. And I'm starting to feel the benefits again. Hoping that 9m-1y from now my neuropathy is mostly gone. I have the added benefit of all these gains from ketosis too, starting from a great place, so my neuropathy is very very good right now.
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