Bartonella, purple streaks, mold

[Frazzled]

My son has been sick for 15 months bedridden with all the usual symptoms of mold/Lyme. He was treated for mold and most of his symptoms went away with the exception of headaches, fatigue, neurological symptoms like not wanting anyone to see him and isolating himself in his room. I discovered purple streaks on left side of body.  He has had low testosterone and cortisol , not sure if it was from mold or Lyme.  Went to infectious disease Dr. sand he said purple streaks are STRETCH marks !  He is 21 has not grown in 4 years, he is 150lbs. He used to be 175 before getting sick.  What do you think about remaining symptoms! I want my son back!

[mama2alex]

Hi, I'm so sorry your son is going through this. I can't tell exactly what you've already done and how long he's been sick from what you wrote, but an infectious disease doctor won't help you (as you saw). You need to work with a Lyme-literate doctor, if you don't already have one.

As you know, the purple streaks are probably a Bartonella rash, but there can be other bacteria, as well as viruses and parasites along with the Lyme and Bartonella. Here's an article that shows one kind of Bartonella rash: https://www.lymedisease.org/cdc-identifies-new-species-of-bartonella/  This looks just like the one my son has had for the last 2+ years, but I've seen other Bartonella rashes on him that were more transient.

How do you know the mold has been completely dealt with if he still has so many symptoms and is bedridden? It definitely seems like there's more to explore and an LLMD who understands mold would be your best bet.

[GraceUnderPressure]

I wish I could offer you something more than my sympathy, but my 25 yr old son has been struggling with neurolyme and bartonella, as well as mold allergies and more for years.  He sounds very much like how you describe your son.  In his case, in addition to low testosterone, and depression, it also causes him Tourette's syndrome.  3 PANS docs and 10-20 thousand plus dollars later, we've never been able to do more than clear his brain fog and reduce his tics slightly. Unfortunately, he has terrible detox genetics and every time we found something helpful, it overwhelmed his system and his tics would escalate so we would have to pull back every time. 

We're pretty sure it's the bartonella that's causing him the most problems (the LLMD's agreed) & he got a nice ugly purple streaky rash for Easter after indulging in a whole lot of sweets and junk while his allergies were simultaneously peaking because it was too much for his immune system to handle.

I can tell you that eating healthy and a green lifestyle has not been anything even remotely close to a miracle cure for us, but it does make a difference - everything you can do to strengthen his immune system or reduce the drags on it definitely helps.

May I ask what treatment he went thru for mold?

[Frazzled]

Thank you for your responses, it feels good not to be alone. I wish I had read these responses before I went to infectious disease dr.  He looked me straight in the eye and said  the purple streaks were  stretch marks!  I said how is that possible, he is so thin and has lost 15 Lisandro the marks go horizontally at an angle across his body. I couldn't believe it.  He was treated for mold for 7 months he took cholestyramine and a nasal spray for margins and biofilm.i have to say he did improve somewhat as far as heart palpitations, joint paint, tingling and numbness , sweats, stomach pain,vision, hair loss, dragging one leg and not feeling good in general. He is left with headaches, loss of appetite, chronic fatigue , depression, agoraphobia, and doesn't want anyone to see him and the purple streaks.  His labs don't look that much different from when he started but something worked to get rid of those symptoms unless it starts out like that and evolves after 15 months. I don't know if there is mold still in house. We had a 60k remediation in one part of basement and I had the air tested after and there was mold in another basemen that we remediated ourselves although it was s different kind of mold that is not as harmful but levels were too high for the house . We couldn't afford anymore remediation insurance would not pay because it was a construction error.  I know I have leaks in my kitchen due to water overflowing above a few times and in my office water was coming g down in the gornor from the shower above, my husband says oh it s alright I fixed the leaks. It was hard for him to believe the whole black mold thing. I had fight to prove I was right and this is what's wrong. He doesn't buy into alternative drs initially but I said what do you want to go let him lay there the rest of his life and proceeded to go to regular drs with the ssme outcome. We are still seeing this one dr. For the mold/ Lyme , not sure why she did not treat him for Lyme too just the mold.  I called and asked her why she had not detoxes him from heavy metals and yeast? She gave me  some BS line and has ordered some botanicals/ supplements to help with that, have not received them yet. why did I have to point that out!!!!  I can't get into the new dr. Till aug. 21.  Do I wait to get in or try to find another dr, although all of them have waitlists. As I read these posts my eyes tear up with all the pain everyone has gone  thru and hope that my son will ever be back to normal fades. Please, I appreciate all your help.! I am sick  and tired of family members not believing in me and think I'm crazy for going to alternative drs. They think I should commit him. My husband finally gets it but money is an issue and so mad nothing is covered by insurance!  We'll make it some how. These are supposed to be the best years of their lives and I hope I can help him., I'll never stop trying. My son moved over to our barn, there is a room with s bathroom so stleadt he is out of this house. I am treating myself and my 2 other dons with cholestyramine at s great cost from the alternative drs..but I Am stuck in this house and my husband  disregard s the other 2  leak areas as not being a problem.  If I had the money I eouukd hire someone yo come in and rip out the ceiling to check it but I don't  and the air test came back negative with the exception of the other basement which we cleaned and removed everything. So for now I will start the detox and immune support  Also drs have said he is depressed but is against taking antidepressants because he read on internet how bad it is for you do my next challenge is to get him to take them, get his testosterone levels labs back and bartonella Elsa test from infectious disease dr. I know it will come back negative but that's all he could offer me. Sorry post is so long, just had a lot to get out . 

[Frazzled]

Frazzled,

I wanted to know what to do while waiting to get into a Lyme Dr. for Barronella.

I see someone said to look at Dr. Bruhner protocol, it seems overwhelming to me and dont know where to start.  Also some one mentioned diatomaceous earth which I have,  but said child could only tolerate 1/4 of dose, what is a dose? A teaspoon any help appreciated. Thx

[GraceUnderPressure]

We got our son tested for bartonella thru Igenex.  It came up negative, but our LLMD at the time (a researcher & teaching dr in Missouri) said there are at least a dozen forms of bart so it doesn't mean a whole lot. 

My daughter also has bart & I realized it when we were doing swim lessons years ago because at the time she was still skinny as a twig & I noticed she had what looked like stretch marks on the backs of her legs.  Like your son, my daughter had never been fat - nothing had stretched her skin so stretch marks was very obviously not the answer.  Thankfully I had just found this forum & suspected it was a bart rash. That purplish to reddish striated rash is pretty distinctive.  I'll post a pic of my son's rash on his leg (he's also never been fat & his skin has never been stretched out by anything), but if you google "bartonella rash" and click on images, you'll see a lot of pictures of them.  That actually helped with my family's skepticism - seeing my pix of the bizarre rash proved to them that there really is something out of the ordinary physically going on with my kids & mainstream medicine has no clue how to deal with it.

I've looked at Buhner's protocols and felt the same sense of overwhelmed confusion so I'll continue watching this thread, too!  Someone pointed me to Dr Zhang's book to learn more about his protocol, but a friend of mine just diagnosed with Lyme was telling me about Dr. Rawl's book "Unlocking Lyme" that she's reading.  It all gets so confusing.  If only there were pat, straightforward (affordable!) answers available.

FWIW, my son says that of all the things we've tried, lomatium (we get it as SEES-plus capsules from Barlow Herbal.com) has done the most to improve his symptoms.  Fair warning, though, it can cause a rash initially which does go away after about a week but itches miserably in the meantime (ours was actually like german measles which made me wonder if it releases viruses - including vaccine viruses - sequestered in the body) so if you do decide to try it, be sure to follow their instructions about how to minimize that possible effect.  I didn't pay enough attention to that (in fairness, my husband had gone into the hospital for an aneurysm during the time we had started), and because I didn't realize what was going on till it was fully upon us, we had to just ride it out.  Which made for a pretty miserable week.  Afterward though, my son said he felt like he could think clearly for the first time in years.

Edited June 26, 2017 by GraceUnderPressure

[Frazzled]

Thank you for your response, I'm going to try and call a new Dr. I've been reading about because yes you are right, it is so overwhelming to me. My son also has grandmal seizures and stopped taking his depakote a year ago thinking that it was making his brain slow. I'm concerned about doing anything without a Dr. to cause it to happen. Has your son been treated  by a Dr.?  If so how long before you tried the lomatium? Here is my son's rash.  It seemed like it was fading a little, I noticed it about s month ago, foes this rash come and honor does treatment make it go away? I don't see him/ body much as he covers himself up in a hoddie and isolates himself in the room. He doesn't want anyone to see him even when I bring food he totally covers himself with a blanket .  Yes this site has been informative and a comfort.

thx

[HopeinHIM]

My heart breaks to read this but I am also encouraged by a parent that is striving for healing and being that  wonderful fighting advocate that these poor kids so very much need.   I have two children.  Both with difficult stories.  Very similar to yours.

  Firstly, I will say there was no single organic reason for their fall .  Everyone is different so for some its treat the lyme of mold and bingo the child heals.  My oldest has the  marks and we were told too that they were stretch marks .  He is tired all the time, easily overwhelmed and tics. Our youngest was home-bound for years. What has worked for us?   1. Clean eating.  They both have detox issues so every time we treated for Bartinella/Lyme they would fall apart on even the smallest herb or anti B.  UHG So we could not do much.  When they were at their worst they were very sensitive to yeast and Molds but as they healed Mold became less an issue. NOW Most foods they eat are organic, lots of veggies and fruits, grass fed beef and chix along with cold water fish  2x a week (good for brain inflammation) We removed Gluten/dairy/soy.  The immunologist (conventional from big children's hospital) believes that certain kids suffer from innate immune responses from certain trigger foods and these three she found to cause inflammation effecting brain the most.  Huge difference for my youngest especially. 

 He is  also supper super thin and she has him on amino acid plant based or bone broth based protein shakes between meals and we use high fat organic coconut milk in can. His mind began to clear in a few months just by cleaning up diet.  2. Having Bowel movements 2x a day helped their poor detox for sure. Increased pure water and actually used fiber powder for a while until they both go now 2x a day.  3.  Good counseling because even if its caused by something outside of themselves the  chemistry is still off and the OCD and anxieties/depression are there and by learning how to deal with these emotions better help's them navigate thru these horrible waters.

 As we treated our youngest son for Bart all his emotional issues (agoraphobia, Bi polar, OCD) disappeared.  WE used low low low dose SSRI and nutritional lithium as well.  WE continue to treat yeast, bart with herbs and cycles of 5 day Tinizidol for gut bacteria.  Both are NOW able to handle the treatment bc their bodies are functioning better. Diet was a huge life style change and took me 3 years to finally own it and implement it.  Best thing we ever did. Not the cure ALL but huge piece of the puzzle for us. Now not everything that comes our way causes them both to fall apart and start over.  They are beginning to strengthen the terrain so that the genetic predispositions  don't  derail them at every turn. Keep searching, praying and never give up!!!       

[mama2alex]

It does sound like you need to switch Lyme doctors, since yours won't treat him for Lyme or Bartonella. Did they ever test him for Lyme and coinfections? When it's this long-term and complex, there is always more than one infection going on. You can probably get LLMD recommendations on this forum if you start a thread letting everyone know you're looking for a Lyme doc in your area.

It sounds like your house may not be mold-free yet, and that is an absolutely essential first step. An air test won't give you a true picture of what's going on in your house. The ERMI test from Mycometrics is the best test, and if that comes back positive, it may convince your husband that more needs to be done.  Also, there may be more to detoxing mold than just cholestyramine. Read the book Mold and Mycotoxins - Current Evaluation and Treatment by Dr. Neil Nathan. He treats different classes of molds with different binders including activated charcoal, chlorella, and bentonite clay, in addition to cholestyramine. These are things you could do at home without a prescription. His website is a great resource too:http://www.neilnathanmd.com/  I've spoken to him on the phone a few times and he is very knowledgeable and experienced.

Have you read about the ketogenic diet for siezures? I haven't researched this much, but have read about it here and there over the years. This may be something to look into, as it will simultaneously eliminate all the typical allergens others have mentioned - gluten, soy, dairy, sugar.

The picture you posted is definitely a Bartonella rash. We've started the Buhner protocol for Bartonella because despite years of treatment with antibiotics, our 17 year old still has it. He didn't have the rash to start, but developed it on his back 3 years ago and it's never gone away since. I know Buhner seems overwhelming, and I avoided even considering it for years for just that reason. However, there's a mom on this forum who healed her daughter completely with Buhner, and my brother-in-law is now having success treating his Lyme and coinfections with it. I would recommend just starting with his book on Mycoplasma and Bartonella, since you know for sure you're dealing with Bart. Once you read what he has to say, you start to understand how this infection works and why antibiotics are rarely enough. Even if you decide not to do his protocol, you'll have a much better understanding of what you're dealing with and may want to just pick and choose a few herbs to see if they help with symptoms. A lot of the herbs he recommends target inflammation in the body, and he explains why this is crucial to healing. We are planning to continue antibiotic treatment for while getting up to speed on the full protocol, as I don't think the antibiotics have been useless and Buhner even suggests that using abs AND herbs can have a synergistic effect. I've found the Buhner Healing Lyme and Coinfections Facebook page to be a good resource: https://www.facebook.com/groups/1441091676154216/

Also, I totally agree that heavy metal testing is important! Heavy metals can really wreak havoc on the immune system, and if your son was vaccinated, he is in the age range that received a large number of doses with the mercury preservative Thimerisol. Also, if you or he has amalgam fillings, that can definitely contribute as well.

I recently found a blog I really like  called the Real Food Rebel: http://realfoodrebel.com/ She followed the Wahl's Paleo diet, not ketogenic, but I found a lot of useful information here.

Another great resource is the Better Health Guy blog: http://www.betterhealthguy.com/

 

[Frazzled]

That's great information,  Thanks. I know I have a long way to go, my son is so difficult to deal with because of the Bart, I know he has heavy metals and he's MTHFR like I do but don't now specifics. I was reading Dr. Amy yasko and she talks about A CBS mutation that is part it methylation pathway. I have not done genetic testing on him but know genetically he has a mutation for mold susceptiblility.  This mold for. At my request is sending me Tox ease, I think it has a couple herbs in it, I'm worried about detoxing due to seizures.he is very stubborn on diet but I can work on that, thx for the websites. Just trying to get into a Dr. We went to Jemsek early on and went 3-4 times and you always meet with a assistant , $400.00 per appt. He put him on 3 antibiotics at once and he could not tolerate it., around that time we discovered mold and went to new Dr. as I said she did not treat the Lyme and he just got the Bart rash a month ago . He has not been tested for coinfections, I know he could have more than one. Jemsek did igenex western blot came back positive .